“Only by judging the actions of their elites can Canadians judge themselves and measure what might be done. This idea of judging our leaders, except in the context of periodic elections, has a frightening Jacobin echo about it to the ears of those of authority. They find it unfairly personalized. But one of the central forces of history is that of judgment, leading to action, followed by the effect of those acted upon…Inaction by real people in positions of power in a real time of need is a form of action. It is a choice. Each one of these individuals has a name, a family, a career, a pension. Increasingly over the last three decades the idea of professionalism and of managerial structure has meant that they do not have names, are not seen or heard as individuals, are not personally accountable. They are just temporary occupants of defined positions, hidden behind generic titles, abstract email addresses or answering machines or spokespeople.” –John Ralston Saul, A Fair Country, 2009

This is the real life of voters with disabilities in the haunted house of Super. Natural. BC.

This is evidence of over a century of abuse, neglect, stupidity, bad faith and indifference inflicted with impunity on voters and children with disabilities and their families by the government of British Columbia.

This is why BC voters and children with disabilities and their families need our version of the US 1990 Americans with Disabilities Act, Australia’s 1992 Disability Discrimination Act, the UK 1995 Disability Discrimination Act, the UK 1996 Direct Payments Act, the Republic of Ireland’s 1999 National Disability Authority Act, New Zealand’s 2000 Public Health and Disability Act, Ontario’s 2001 Ontarians with Disabilities Act, the Republic of Ireland’s 2005 Disability Act, Ontario’s 2005 Accessibility for Ontarians with Disabilities Act and Australia’s 2006 Disability Act and a Wrongful Death Act.

[Comments in square brackets are Paul Caune's, one of the founder of Civil Rights Now! The “I” speaking in some of the sections is Paul Caune.] [NOTE: All cited newspaper articles, with a few exceptions, are from the Canadian Newsstand database.] [Bolding by Civil Rights Now!]

“Some population groups, such as people with disabilities, children and youth with special needs, children and youth at risk, people with mental health disorders, addictions or problematic substance use, and seniors face multiple barriers to improving their social and economic wellbeing. Overcoming these barriers requires focused interventions that are integrated and client-centred.” –BC Government Strategic Plan Update 2005/06-2007/08 [Sept 2005] http://www.bcbudget.gov.bc.ca/2005_sept_update/stplan/default.htm

1871: British Columbia joins the Dominion of Canada.

1878: The institution which came to be called Woodlands is founded.

1887: “In 1887 [Woodlands] was again overcrowded.” –In the Context of its Time [p41] by Val Adolph

1892:”The calm of the institution [which latter was called Woodlands] was shattered in October 1894 when a Commission of Enquiry was appointed to investigate charges of ill treatment and the excessive use of restraint…The report focused on Knute Schubert’s death in 1892. The death had been reported as suicide, but on further enquiry it was found that he had died while in a tight restraint…The commissioners reported that male patients gave the impression of being terrorized and living in a state of abject fear. Male patients were afraid to speak because of their fear of punishment, and all told a story of cruelty and oppression…They were all aware of the man Schubert’s death in dark closet while confined in a straight jacket, and they all knew of the cage in the basement cellar. Hour after hour we listened to the most depressing tales of cruel and humiliating usage. Impairment of memory, too, was in most instances quite as remarkable amongst the officers as in those under their charge.” [The italics are a quotation from the 1894 report. In the Context of its Time: A History of Woodlands, p48, by Val Adolph, 1996 Ms. Adolph was the head of Volunteers at Woodlands from the late 1960s to the 1990s{?} This book was published by the BC Ministry of Social Services. The NDP had been the government since 1991 by this time.]

1895: “No person admitted to the Provincial Home [for male senior citizens] shall, so long as he is an inmate of the same, be entitled to vote at any provincial Election.” –from the rules of the BC Provinicial Home for Aged Men (Kamloops), quoted in Into the House of Old: A History of Residential Care in Britsh Columbia, p176, footnote 8, [2009], by Megan J. Davies

1896: “[Woodlands] was still overcrowded.” –In the Context of its Time [p51] by Val Adolph

1896: “In 1896 a female patient died in a few hours after arriving [in Woodlands] from Nanaimo in unconscious and moribund state. The verdict at the inquest stated, ‘Died by a visitation of God.’ It was, said [a Woodlands manager], ‘ a correct verdict, no doubt, but one that throws no light whatever on the physical cause of death, and signally fails to explain why the patient was submitted, in a dying state, to the long and fatiguing journey by land and sea from Nanaimo.” In the Context of its Time [p59] by Val Adolph

1901: “In 1901 [psychiatrist C. K. Clarke] served as a royal commissioner investigating [Woodlands]…he confined his remarks to the many improvements in hospital conditions he believed were long overdue at [Woodlands]”. –Keeping America Sane: Psychiatry and Eugenics in the United States and Canada 1880-1940 by Ian Robert Dowbiggen, 1997

“Dr Clarke’s recommended…more use of [unpaid] patient labour [at Woodlands]. He stated that [Woodlands] was the most expensive [asylum] to run in Canada. –In the Context of its Time [p57] by Val Adolph

1927: “Overcrowding did exist in the available institutions [for people with disabilities in BC in 1927].” –Our Master Race: Eugenics in Canada, 1885-1945 [p96] by Angus McLaren,1990, paraphrasing from the 1927 Report of the Royal Commission on Mental Hygiene by E. J. Rothwell)

1930s to 1992: “Reports from the 1930’s onward found that Woodlands was overcrowded, poorly staffed, poorly funded, physically hazardous, operated on a medical rather than a social model, and was overly reliant on restraints and behaviour controls rather than rehabilitation and community living.” [The Woodlands Project: A Report of the public Guardian and Trustee of BC, Aug/2004, p 20, http://www.trustee.bc.ca/news_information/woodlands/Woodlands%20Project%20Report.pdf  This report is based on a review of 100,000 pages of Woodlands documents and 127 interviews with former Woodlands residents.]

1933 to 1979: the Sexual Sterilization Act, is made law by the government of BC, which has the following definition: “”inmate” means a person who is a patient or in custody or under detention or in an institution.” If such an inmate had traits that in opinion of a doctor could be passed on by an inmate in the event of the inmate having children upon release from an institution, the doctor would recommend sterilization to the BC Eugenics Board. If this Board unanimously accepted the doctor’s recommendation and the inmate consented to it, they would be sterilized. If in the doctor’s opinion the inmate was incapable of giving consent their family or guardian could give consent. “

“In British Columbia the total number sterilized is impossible to determine since the files of the Board of Eugenics were either lost or destroyed.” –Our Master Race [p159] by Angus McLaren

1935 to 1945: In 1945 a M. Stewart made a report for the then Superintendent of Essondale (an institution that hived off of Woodlands) which he in turned forwarded to the deputy provincial secretary. This report was entitled Aspects of “Eugenical Sterilization in British Columbia with Special Reference to Patients Sterilized from Essondale Provincial Hopital since 1935”. The reports describes 64 cases of sterilization, mostly unwed mothers who had been diagnosed as “mentally retarded.” See pages 161 to 163 Our Master Race.

1937: “Two scandals concerning the plight of the institutionalized elderly caught the attention of B.C. in 1937. The first was a sad tale of petty cruelty and manipulation of aged inmates at Homes for the Friendless in Burnaby and Summerland. One couple had been refused $2.50 spending money from Home administrators although they turned their pensions and saving over to the institution. Other residents were intimidated and fearful of physical injury if they made complaints.

But the expose of the Homes for the Friendless paled beside the sinister activities of the Collins Family. Vancouver detectives…found [the Collines] had operated a series of homes for elderly people and unmarried mothers in various parts of the city, making use of various aliases. The Collines often moved into the house owned by the old man or woman for whom they were caring, and continued to live there after the death of their patient. There was an unusally high death rate among mothers, babies and elderly facilities run by the couple.” –Into the House of Old, p152, by Megan J. Davies

1953: In 1953 the BC Government passed the School for Mental Defectives Act. “Sec 2 “mentally defective”…means a person…who requires care, supervision and control for his own protection or welfare of for the protection of others; Sec 3 (2) The chief school for mental defectives is the Woodlands School; Sec 26 Judges…or duly qualified medical practitioners who sign any [committals to such schools] are not liable to any civil proceedings on ground of want of jurisdiction or on any other ground if they acted in good faith and with reasonable care; Sec 28 If any officer, nurse, servant or any other person employed in any school for mental defectives…ill-treats or willfully neglects a patient, his is, on summary conviction, liable to a penalty not exceeding one hundred dollars, or to imprisonment, or to both fine and imprisonment for a term not exceeding three months, with or without hard labour, at the discretion of the Magistrate…” Yes, you read that last part correctly: if you willfully neglected or ill-treated a mentally defective child the worse punishment you could get was a $100 fine and three months hard labour in prison. On the other hand the School for Mental Defectives Act empowered the Medical Superintendent, at their discretion, to keep such schools’ inmates locked up forever. This is in sections of the Act I haven’t cited here.

Late-1950s to late-1980s: Deaf students to get cash for sex abuse: Officials who failed to stop incidents won’t be punished

Copyright The Vancouver Sun)

VICTORIA — The province is offering cash compensation to students who suffered sexual abuse at the Jericho Hill School for the Deaf, but it will not discipline government officials who failed to stop the abuse.

Attorney-General Colin Gabelmann announced Wednesday the government is setting aside $5.25 million for redress in response to recommendations from former B.C. Supreme Court justice Thomas Berger.

But Gabelmann said it would be “difficult” to go back now to identify who ignored documented reports of abuse.

In a report made public Wednesday, Berger advised the government to accept responsibility for all claims of sexual abuse suffered by deaf students. He was appointed about two years ago to provide the government with legal advice on civil suits brought by some of the school’s students.

Some 150 students are now eligible to apply for compensation, which will range from $3,000 to $60,000.

But Berger advised the government not to accept liability or offer a blanket apology for the abuse at the Vancouver residential school, even though he found the government failed to act to protect students.

“The situation of deaf children made them especially vulnerable. It is clear that the provincial government knew of the abuse,” he found.

Abuse by staff started a vicious circle, he said, in which abused children began to abuse younger students. When the government received explicit warnings of the abuse in 1982, only allegations relating to staff were followed up. Three child-care workers left the school.

The two ministries responsible for the school — education and what is now social services — couldn’t agree who should take action, so nothing was done, Berger found.

A representative for the deaf community said Wednesday the government has not resolved the affair.

“So far only one person has been convicted and there are many more offenders out there who are free,” Roger Carver, vice-president of the Greater Vancouver Association of the Deaf, said. “Not only that, but there are people within government, the administration of Jericho Hill School and the ministry of education who should also be held accountable for their inactivity.”

The government acknowledged two years ago that former students suffered sexual, physical and emotional abuse at the school over a period of three decades until the late 1980s.

“Government acknowledges its responsibility to ensure the care and well-being of its children in care,” Gabelmann said. “But healing involves more than just the payment of financial compensation.”

The government is offering counseling to victims and better training for staff and plans to move 30 students into new cottage-style residences.

–Justin Hunter, Vancouver Sun, June 29, 1995 http://proquest.umi.com/pqdweb?did=21279353&sid=4&Fmt=3&clientId=58962&RQT=309&VName=PQD

“Among both sexes at [the Jericho Hill School for the Deaf] the notion of forced sex became the norm. Many deaf children at [Jericho] would have defined intimacy as forced sexual relations…Victims and offenders were in the same peer group. Some victims themselves became offenders…These findings…reflect a condition of widespread and pervasive sexual abuse of children at Jericho extending over many years…My conclusion is that sexual abuse was at times widespread at Jericho Hill School and that it went on over a period of many years…I make no finding regarding individual cases. I am instead confining myself to stating my finding to applying generally to the state of affairs at Jericho Hill School, that from the 1950s, extending over about a 35 year period, there was sexual abuse by some child care staff, sexual abuse by some older children against younger children, and that some of these younger children when they became senior students sexually abused new entrants.

The case histories can be shocking.”

–Report of Special Counsel regarding Claims Arising out of Sexual Abuse at Jericho Hill School Prepared for the ministry of Attorney General by Thomas R. Berger, O.C., Q.C., March 1995, [p11-13]

[In 2005-2006 I lived in a group home where one of its residents was a former blind day student at Jericho. ]

1962: The government even had shocking stories from Woodlands in its hands 45 years ago, when Victoria RCMP inspector H.F. Price sent lengthy and horrific reports about abuse and thefts at Woodlands to B.C.’s deputy attorney general, Gilbert Kennedy. Those reports were never released, and a freedom-of-information request finally yielded about 50 pages with all names deleted–including a November 2, 1962, sworn statement by one Woodlands aide.

Staff member “X” chillingly told police (here transcribed exactly as written) about the extreme cruelty against children he’d witnessed:

“One day when we were in the kitchen and the patients were in the dining hall eating their dinner, their was some patients sitting on the floor in the kitchen going with out dinner and one…saw a piece of bread crust on the floor and started to crawl for it. One of the…Nurses saw him and said, watch this and walked over and kicked him with all his mightin the throught, when the patient straightened up grabing his throught the nurse kicked him in the stoumic and left him laying gasping on the floor. The nurse then came back to the rest of the aids laughing and asked us if we had saw the beautiful kick.…

“This same patient has a small yellow duck toy that he treasures he always keeps it under his shirt for fear that one of the staff will take it away from him. Natcherally the staff are always trying they kick him slap him pull his head his arms legs punch him trying to get his little yellow toy duck…they just want the sadisfaction of hearing him schreem and the louder he schreems the harder they kick.…They don’t let him have half his meals.…He asked why they hate him.” (Excerpt from page 3, “8. Incident”.)

Another time X disclosed, after working on B Ward for only one day: “Just as they started to serve the kids breakfast…a little blond boy about seven dropped his plate and broke it. You could just see the fear in his eyes, as he looked at the nurse coming at him, sorry sorry won’t do no more the little boy said as he covered his face and head waiting for the blows…the nurse slapped his face threw him down kicked him then draged him from the dining hall, I could hear the schreeming…all the way down the hall.” Later that day: “The kids were running around playing enjouing themselves a cute little blond boy about ten years old named [deleted] ran passed him [an aide] got grabbed then thrown against the wall his head banged against it untill he was crying then thrown in a corner.” (Excerpts from pages 6 and 7, “Ward B”.) [Woodlands Justice in Doubt by Roxanne Gregory April 5, 2007 http://www.straight.com/article-82907/woodlands-justice-on-hold ]

Mid-1960s: “There was a lot of slapping at Woodlands and while I had to get used to it in a hurry, it took me awhile to make sense of it. I finally decided it had something to do with being retarded. The way I figured it, once they labeled you retarded, they decided you had no feelings: that’s the only way it made sense to me, to be slapped and kicked, shoved with a broom handle, to have my arm twisted and to be yelled at were normal everyday things here, just like they’d been at home. Except here it was worse; at home I could run out and hide in the bush but here I was caught.” [Living with Labels and Lies: A Life Story, by Carol Dauphinais, p38, 1997. The passage quoted is Dauphinais' describing her time at Woodlands in the mid-1960s.]

1968: Pauline Hughes, a doctor and psychiatrist, after serving as the Deputy Medical Superintendent of Woodlands since 1955 is appointed the Medical Superintendent of Woodlands. She is supposedly the first woman in Canadian history to be given the top job of such an institution. [In the Context of its Time by Val Adolph, 1996.]

Late-1960s:“Drew [a teenager with a developmental disability] was admitted [in the late 1960s] to Evandale [a BC mental institute] where he stayed for three months, during which time Jo [Dickey, his mother] was not allowed to see him. Then, one night, without letting her know, he was moved to the Woodlands institution…The following morning she received a call.

‘I [Jo Dickey]drove to Woodlands. The Superintendent (who they called the Psychiatrist) said to me, your son is here. Yes, I said, and if it takes the rest of my life I will get him out of here. It’s the last place I want him. So of course I was tagged right there as a troublemaker. There was a desk where you have to check in but I learned what ward he was on so I kept going. There was a heavy door, and when they opened it I put my foot in. They offered to bring him to se me but I said, No I am going to see my son. So, for about a month I went every day and sat with him. They [the staff] hated it, thy just hated it…if you’ve ever seen Cuckoo’s Nest you know exactly what those places are like.’” [Disability, Mothers and Organization: Accidental Activists,p63 Melanie Panitch, 2008.]

1970-1999: “Nancy, diagnosed with Cerebral Palsy when she was a year-and-a-half old, first moved into [George] Pearson [Centre] when she was 18. Apart from the odd day trip and her weekly church attendance, she lived there continuously for the next 29 years. The ebb and flow of her life was defined by other people…’It was noisy there, ‘she said. ‘There was no privacy and not much freedom.’…There were ‘BM [bowel movement] days’ and ‘bed times’. There were rules about wheel-chairs: you could only get into your wheel chair once a day. If you got tired or uncomfortable and asked to be put back to bed, that was it—you stayed on your back until the following day. Most residents got to take a bath once a week…While at Pearson, Nancy rarely went out.

Apart from her weekly church trips, she usually stayed on hospital property. She couldn’t do her own shopping, so her mother brought her clothes. If her parents came from the interior, they needed to stay or in a hotel.” –Doing Whatever It Takes: Profiles of Peer-Supported Transition from a Care Facility to the Community, 2003 http://www.bccpd.bc.ca/docs/carma_anthology.pdf

1972 to 1975: “[NDP BC Premier Dave] Barret led a secretive cabinet that kept even its caucus in the dark. Although an overachieving public relations staff started flooding the media and an eventual 40,000-name mailing list with a daily gush of press releases, they seldom said anything. Even Barrett’s autobiography, which is self-serving, often inaccurate and poorly written, offers little real news. According to the BC Archives, records dealing with Barret’s years as premier have inexplicably gone missing. The records service surmises that they may have been destroyed or given to someone outside the government rather than be archived.” –British Columbia’s Premiers in Profile: the good, the bad and the transient (2000) by William Raynor [p197]

1970s: in 2010 by chance I met a very tiny women who had a good job and owned her own place. She told me she lived in the Sunnyhill Hospital for Children in the 1970s. She told me some of the Sunnyhill staff would put her in a garbage can “because they thought it was funny.”

1970s: In 2010 by chance a met a woman who had a good job. She told me in the 1970s from time to time she would stay in the Sunnyhill School for Children in Vancouver for sugeries. She told me she witnessed Sunnyhill staff beating children there.

1976 to 1992:”Details of physical abuse found in the records include hitting, kicking, smacking, slapping, striking, restraining, isolating, grabbing by the hair or limbs, dragging, pushing onto a table, kicking and shoving, very cold showers and very hot baths resulting in burns to the skin, verbal abuse including swearing, bullying and belittling, inappropriate conduct such as extended isolation, wearing shackles and wearing a belt leash with documented evidence of the injuries including bruises, scratches, broken limbs, black eyes and swollen face…The sexual abuse included assault, intercourse and in the result, injuries and in a few cases, a pregnancy.” The Need To Know: Administrative Review of Woodlands School, Aug/2001, http://www.bcacl.org/documents/Woodlands_Abuse/The_Need_to_Know.pdf  (Based on an analysis of incidents described in Woodlands documents from 1975-1992.)

1976 to 1992:”Stories that were told by the former residents told of physical abuse such as being slapped or beaten, sexual abuse by staff or other residents, having to work on the wards or for other businesses, being confined in side rooms or being placed in restraints or losing their privileges. Residents talked of being afraid to speak up for fear they would be punished. They also spoke of the fear of watching or hearing another resident being abused. Some of the residents described how scary it was to live on a ward where they felt the other residents were dangerous.”[ The Woodlands Project: A Report of the public Guardian and Trustee of BC, Aug/2004, p 20, http://www.trustee.bc.ca/news_information/woodlands/Woodlands%20Project%20Report.pdf  , this report is based on a review of 100,000 pages of Woodlands documents and 127 interviews with former Woodlands residents, this was from the 1975 to 1992 period.]

March 1978: “On occasion when one reads history, the impression can very often be that things don’t really change very much. I think anyone reading this history of Woodlands School will come away with an entirely different impression indeed. As I leafed through this booklet, I was jointly taken with two sensations: the first, sadness at how in our ignorance we have treated and sometimes mistreated the handicapped and retarded, and second, satisfaction with the knowledge that we have moved toward more humane and in informed programs.” William Vander Zalm, Minister of Human Resources, from an introduction to Woodlands: A Century of Progress by Val Adolph, 1978, published by the Ministry of Human Resources.

July 1979: “I want to address myself to the so-called cuts in the camp budget for Woodlands. You make light of the commitment that this side of the House, or any member of this House, has to the retarded children in this province. Let me say once again that we have the best program and services for retarded children anywhere in Canada. There isn’t any place that gives better.” –Grace McCarthy, Minister of Human Resources, July 19, 1979 Hansard p. 895 http://www.leg.bc.ca/hansard/32nd1st/32p_01s_790719z.htm

Early 1980s: ”In the early1980’s, I was a young parent of a daughter diagnosed with a disability. I had recently become Executive Director of the BC Association for the Mentally Retarded (now BCACL) and I had been invited to tour Tranquille Institution in Kamloops one autumn day.

I witnessed a typical morning on one of the wards – one in sharp contrast to the one my daughter was enjoying.  Several of the adult residents were lined up, slumped in wheel chairs or lying on gurneys, waiting in the hallway for a morning bathing ritual.  They were barely dressed, wearing hospital type gowns – the ones with ties at the back that remove every morsel of your dignity.  The bathing area consisted of deep metallic sinks similar to those you will encounter in restaurant kitchens.  Each person was lifted onto the cold metal and hosed down.  Forgive the expression but the whole process reminded me of a car wash – efficient, assembly like, impersonal.

After being toweled down they were placed back on the metal gurney, still wrapped in their damp towel, exposed to the cold and waiting for the rest of the residents. Once everyone was ready they were wheeled down the long corridor to be dressed for their ‘day program’.

This daily activity consisted of being left lying on gym mats on the floor with a television mounted high on the wall, its picture flickering.  I was told this was a typical day – no touch, no stimulation, no companionship.” –Al Etmanski http://www.planinstitute.ca/blogs/aetmanski/bc%E2%80%99s_institutions_%E2%80%93_stain_our_history

Jan,1982: “WOODLANDS NEWS LETTER

Volume 4, Number 1

Jan, 1982

Editor: Val Adolph

Throughout the Christmas season we have become aware of the strengthening ties between Woodlands and that indefinable expansive territory we call “the community”.

Each year it seems that more and more parents visit their family members in Woodlands. Maybe you feel more welcome now than you used to; perhaps the personal contacts with ward, social service and other staff has helped, or is it the personal invitations to planning meetings or to help celebrate Christmas?

More families now take their son or Daughter home for Christmas, whether for a few days or a few hours, and year round, more from Woodlands join family get- togethers or to go shopping or to eat out. This increased family involvement, whatever form it takes, is a source of pride for staff at Woodlands besides being of great importance to your sons and daughters.

Almost all Woodlands residents have many opportunities to move back and forth between Woodlands and “the community”. Besides the many people who attend schools or workshops in various areas of the lower mainland, there are others who go into New Westminster shopping or go to the movies with friends; others have similar activities but in a more organized group, with staff.

There are visits to town to shop for clothes, eat at a restaurant or maybe visits to the home of a staff or volunteer friend. There are outings that are planned as part of a training program and there are spontaneous ‘lets go out’ events- anything from a summer picnic to tobogganing in winter.

Only a very small number of the most physically handicapped residents are “confined in the institution” – to use a well known cliche – and that is because it would be damaging to their health to move them. Others with physical handicaps, even those in wheelchairs or day beds, can usually find an energetic staff person or volunteer who will provide the mobility so that they can join shopping trips or picnics. Increasingly it is parents who are helping to make community visits possible.

So this new year we would like to recognize the efforts that parents have made to visit their family member here and to include them in family events and celebrations. Your words and letters of support are a source of encouragement to staff as they continue to seek ways of improving Woodlands as a resource for retarded people.

Pauline Hughes

Manager Woodlands” http://www.michaeldecourcy.com/asylum/archive/clipping_file_03.htm#txt

1982: “It is clear that the provincial government [of BC] knew [in 1982] of the abuse [at the Jericho Hill School for the Deaf]…The Ministry of Human Resources and the Ministry of Education shared responsibility, but neither acted. Each had its own functions; the Ministries did not agree between themselves that either one of them should take action.”

Report of Special Counsel regarding Claims Arising out of Sexual Abuse at Jericho Hill School Prepared for the ministry of Attorney General by Thomas R. Berger, O.C., Q.C., March 1995 [p19]

[Grace McCarthy was the Minister of Human Resources in 1982. William Vander Zalm was the Minister of Education from 1981 to 1983.]

1983: Dr. Pauline Hughes retires after serving as the Medical Superintendent (later called Executive Director and Manager) of Woodlands since 1968. In the Context of its Time, by Val Adolph, 1996

1983: “On other fronts, striking employees agreed to increase staff levels at Pearson Hospital for long-term care in Vancouver after being told of an outbreak of skin disorders among bedridden patients who need to be moved regularly.

Fred Westwick, hospital executive director, said the lack of Government-employed nursing aides and orderlies was responsible for the outbreak.

The union will meet hospital officials again today to ensure that staffing levels are adequate.”—Globe & Mail Nov 07,1983 http://proquest.umi.com/pqdweb?did=1111449801&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1985: VANCOUVER (CP) – Six men, paralysed from the neck down and apparently resigned to spending their days in the barracks-like ward of a hospital, have been given a new lease on life.

The six, four of whom rely on respirators, have moved into a spacious new apartment on Vancouver’s False Creek.

“We’re the forerunners,” said Rob Dunfield, 26. “We think we’re the first in the world, certainly the first in Canada with disabilities like ours to live in a group home.

” I knew I didn’t want to spend the rest of my life in an institution, ” said Dunfield, who began toying with the idea of his own home six years ago, a year after he broke his neck when a balcony crumbled beneath him. ” None of us did. “

The 436-square-metre apartment includes eight bedrooms, six for the men, all in their 20s or early 30s, and two for the 24-hour support staff, a computer room, a large comfortable living room and an enormous kitchen where the paramedical help will prepare meals.

The apartment has been paid for by a variety of grants, donations and fund-raising drives, including Canada Mortgage and Housing Corp., Vancouver Foundation and the Canadian Paraplegic Association.

One of the six is a Workers’ Compensation Board claimant; the others receive benefits from the Insurance Corp. of B.C. and the Health and Human Resources ministries.

The men don’t expect living in their new surroundings to be trouble-free – they assume they’ll have the usual squabbles and temper flares all roommates have over menus, bills and stereos too loud. But at least they will make all the decisions themselves – something they were never able to do in the hospital.

” It is the same in all institutions, they make the decisions for you, “ said Walter Lawrence.

The apartment is located at the entrance to redeveloped Granville Island, home to a large market, craft shops, restaurants and theatres and has easy access to a walkway around False Creek. On the opposite side of the creek is the Expo 86 fair ground.

” It’s a prime location, we didn’t want to be out in the sticks somewhere, not being able to have people drop by or us go out, ” Dunfied said. ” But here we couldn’t have picked a better spot. “

The most important feature of the apartment, however, is the private bedrooms.

” You don’t realize how much privacy means to you until you’ve lived on a ward with 25 beds all in a line, ” said Lawrence, 34, who of all the roommates spent the longest time in an institution.

Seventeen years ago he moved into Pearson Hospital after he broke his neck diving into a pool.

” It is incredible, living here has gone beyond all our expectations, ” said Lawrence. ” And let me tell you our expectations were high. Every day I enjoy it more. Just being out of the hospital is great. “

The apartment also has the necessary medical and physical facilities to meet the needs of their disabilities. Intercoms link all the rooms and will set off alarms if respirators stop or sounds of distress are made.

There are two large cupboards where each night the batteries of the wheelchairs are recharged so that the respirators will have power to run on during the day. The bathroom has a state-of-the-art bathtub with a hydraulic lift. –Ottawa Citizen Oct 1985 http://proquest.umi.com/pqdweb?did=168481281&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD 

1985: “[Rick] Hansen started his 1985 world tour from the Oakridge Centre mall, without a lot of media coverage. (Some press was even antagonistic, echoing what Olympian Harry Jerome went through years earlier when he tried to illuminate social ills.)” –Georgia Straight, Oct 28 2010  http://www.straight.com/article-354725/vancouver/hero-dragons-heart

1986:  “It’s always been a battle, man. You have to remember that at the time [1986], Hansen had kind of fallen off the map as far as the Canadian public was concerned. This was before the Internet and digital cameras, of course, so it couldn’t happen like this today. He disappeared in his travels, and it wasn’t until Hansen had this huge success in China that people remembered who he was. You know, most people don’t realize this, but the main reason it was so well received over there is that the son of Deng Xiaoping, China’s president at the time, was in a wheelchair. So there was a personal angle there.”—Jim Byrnes Oct 28, 2010 Georgia Straight http://www.straight.com/article-354725/vancouver/hero-dragons-heart

1987: (Copyright The Vancouver Sun)

SIXTEEN months ago when six young men, all paralysed from the neck down, became the first severely disabled in Canada to move out of an institution into their own apartment, there was guarded optimism about how they’d fare in the community.

Today, there is hard proof their move is an unqualified success, both in cost savings and improved quality of life.

The latter comes as no surprise to anyone who has seen Robb Dunfield, Walter Lawrence, Cody Tressiera, Jamie Babb, Don Danbrook and Doug Van Koughnett, all in their 20s and 30s, in their electric wheelchairs out and about Granville Island picking up supplies for dinner or enjoying the sun on the balcony of their nearby apartment.

It is a huge leap from the barracks-like ward of Pearson Hospital they lived in, some for more than 10 years, following the accidents that broke their necks.

And an independent report, paid for by a provincial government grant and conducted by health consulting firm Patricia Ryan and Associates, has found that their move from the hospital to the Granville Island Creekview housing co-op is cheaper by almost $100 a day per person for their care.

“It amounts to about $215,000 in savings a year,” said Norman Haw, president of the Canadian Paraplegic Association. It was through the support of the CPA that the men, five of whom are dependent on respirators, were able to get the funding and the cooperation in place to move out on their own.

“It shows that there is no need for a spinal-cord-injured patient or the severely disabled to have to stay in extended care,” Haw said.

The report’s findings were released recently at the men’s expansive apartment, which covers the area of nine single apartments and includes individual bedrooms, a large communal living room and dining area as well as a large kitchen where attendants make their meals.

“I am impressed,” said B.C. Health Minister Peter Dueck of the complex after he was given a tour by Dunfield, 28, who broke his neck eight years ago when a balcony he was standing on collapsed beneath him. Now an accomplished oil painter, Dunfield has a corner of the computer room set up with his paints, brushes and canvases. It takes him about two weeks of painting by mouth to complete one of his B.C. scenes.

“It is a tremendous advance if we can provide this kind of care at equal the cost or less,” Dueck said. Although the minister would not give any guarantees, without studying the report in detail, that future projects of this sort will be undertaken, he said “the quality of life is a definite bonus.”

Walter Lawrence, 36, the oldest of the residents, who broke his neck 19 years ago and ended a promising hockey career when he dived into shallow water, said the living arrangement “has exceeded all our expectations and we had really big expectations. It is great that it is cost-effective, too.”

Besides evaluating the cost efficiency, the report looked at the maintenance of the men’s health, and the quality of assistance they received. Both were equal or better to what they had at Pearson, Haw said.

“We hope that within a few years a project like this will not be seen as being exciting – because we hope it will be commonplace,” Haw said.

Haw said the CPA was trying to arrange a similar communal apartment for seven men and women now in Pearson who want to move out into the community.

“The hardest part is coordinating all the funding and individual arrangements,” Haw said.

The False Creek apartment, which required almost five years of planning, was made possible by a variety of grants, donations and fundraising, including Canada Mortgage and Housing, Vancouver Foundation and the CPA. Other support comes from the Workers’ Compensation Board, the Insurance Corporation of B.C. and the ministry of human resources. . –Dec 7 1987 Vancouver Sun http://proquest.umi.com/pqdweb?did=171236921&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1988: Pleas went unheeded, patients say;

(Copyright The Vancouver Sun)

Two physically handicapped residents of Vancouver’s Pearson Hospital testified Tuesday staff ignored emergency bells and cries for help as one of their room mates lay choking to death in bed.

Cameron Allk and Brian Zajak were testifying at an inquest into the death of Roger Fredin, 39, who died May 25.

Fredin, almost completely disabled by muscular dystrophy, had been suffering from chest congestion in the week prior to his death.

Allk and Zajak, who are unable to get out of bed due to their disabilities, said staff were alerted by an emergency bell that Zajak activated four times but that each time it was turned off at the nurse’s station. The incident occurred at 11 p.m. during a shift change.

Accounts differ

However, one of the nurses on duty that night, Deby Rabang, said the bell from Fredin’s room only rang once and was turned off without staff being aware of an emergency.

Another resident in the extended care facility, Terry Thomas, who was in a room two doors away, said he heard the emergency bells ring three or four times during the incident and then heard them being shut off.

According to Allk and Zajak, nurse Remidios Lukban came by their room on her way home but ignored Zajak’s pleas that she come in and see Fredin.

Under questioning from coroner’s counsel John Bethell, Zajak said that he yelled at Lukban: “It’s an emergency – Roger’s in trouble.”

But he said Lukban said, “They’ll be along in a few minutes.”

“I said we need help now, it’s an emergency. But she kept walking down the hallway,” said Zajak.

Allk said the incident began at about 11:01 p.m. when Fredin called out for help.

He said he realized he was in trouble but didn’t have an emergency bell at his bed. Fredin had one but couldn’t reach it, so he shouted and awoke Zajak.

Zajak said he woke up to hear Fredin gurgling and rang the emergency bell. He said it rang for a couple of seconds then was turned off. He waited for a response from the nurses and when none came he pressed the bell again and again it was turned off.

Allk, who said his TV was set to show the time, said it was five minutes after they had tried to alert staff that he saw Lukban come down the hall. He said she told them that someone would come after the reports were completed.

When she ignored Zajak’s request for help the pair began yelling for someone to come. Allk said staff arrived at 11:13 p.m.

Both men said that the non-emergency signal used to summon staff – a single press on the bell – sets off intermittent ringing, while two presses gives off a continuous ring. They said there is no mistaking the difference.

However, Rabang – who was taking over from Lukban – said that when the bell rang it was shut off by health care worker Nita Damaso who was with her and Lukban at the nurse’s station while they exchanged duties. Nov 30 1988 Vancouver Sun http://proquest.umi.com/pqdweb?did=171976751&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1988: Unaware of dying patient, nursing staff testifies; Unaware of dying patient, nurses claim

(Copyright The Vancouver Sun)

Nursing staff at Pearson Hospital testified Wednesday they were unaware that, while muscular dystrophy patient Roger Fredin was dying, his roommates were summoning them to his aid.

Two roommates of Fredin, 39, have told an inquest into his death that they pressed emergency bells and yelled for help but were ignored on the night of May 25. Because of their own disabilities, they were unable to move out of bed to bring help.

Fredin, who was unable to raise his head off the pillow, had been suffering from chest congestion in the week before his death, coroner Gerald Tilley and the jury were told.

According to other testimony, Fredin had cried out to his companions for help, and then begun making gurgling noises. The roommates tried to summon staff by pressing the emergency bell and became frantic and started yelling when no one came.

According to patients Cameron Allk [sometime after this Allk moved to a North Shore group home home where he lived to his death in 1998; I moved into his group home room soon after]and Brian Zajac, nurse Remidios Lukban, who was going off duty, walked by their room and Zajac yelled to her that Fredin needed help.

She replied that other nurses would be along in a few minutes.

However, Lukban testified that she didn’t hear anyone calling for help and that when she walked by the room, she called out that someone would come once the nurses had finished going over reports at the shift change.

Lukban had handed over her duties to nurse Dedy Rabang and health care worker Nita Damaso at 11 p.m. Helping them was a student nurse, Heather Ferguson.

According to Rabang, a bell sounded at the nurses’ station shortly after she took over and was immediately turned off by Damaso before anyone could determine whether it was an emergency call.

She said Damaso told Lukban to check the situation on her way out and tell the patients that someone would be along once the reports were finished.

According to Rabang, when Lukban got to the room, she looked at her and indicated that everything in the room was “okay.”

Rabang said if she had not done this, she would have gone down to check herself.

She continued with the reports until a second call came in from the room and this, too, was quickly shut off by Damaso, so no one could tell whether it was an emergency call.

Damaso went to Fredin’s room while Rabang went to another room also calling for help.

Damaso found Fredin unresponsive and when Rabang was brought in, she found no vital signs.

Lukban said when she went down to Fredin’s room, she didn’t know the call was an emergency.

Asked if there was any reason she didn’t go into the room and check, she said all she was doing was passing on Damaso’s message.

Damaso couldn’t give a reason for turning off the bells before anyone could tell if they were emergency calls. She said she had never done it before.

Damaso testified that, minutes later, she also cut off an unrelated call from a different room because she knew it would be a routine request, such as fixing the blankets or splints or turning off the television.

“I lifted (the receiver) right away to avoid the annoyance,” Damaso said. “I know what they want already.”

Coroner’s counsel John Bethell then asked Damaso: “You cut them off before they had a chance to say what it was?”

Damaso replied: “Yes sir.”

Allk, who could see the time on his television set, said Fredin cried out at 11:01 and that Lukban didn’t appear until 11:06 and that it wasn’t until 11:13 p.m. that other nurses arrived.

The inquest continues. –Dec 1 1988 Vancouver Sun http://proquest.umi.com/pqdweb?did=171979271&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1988: Patient’s death ruled natural

(Copyright The Vancouver Sun)

A coroner’s jury, unanimous in its belief that the death of muscular dystrophy patient Roger Fredin might have been prevented, has nevertheless found his death to be natural.

But it reached that decision only after being directed to it by coroner Gerald Tilley.

The jury had interrupted its deliberations Thursday and had returned to court unable to classify Fredin’s death.

The foreman said the jury was unanimous in believing the man might not have died had help been given to him in the minutes prior to his death.

“We are all equally concerned about the definition of natural death – a death not caused by outside events. We feel that, indeed, some outside events have a lot to do with this,” said the foreman. “Are we to understand that what happened between 11 and 11:13 p.m. is not relevant?”

Alarm bells cut off

Fredin, 38, died in Pearson Hospital after nurses failed to answer emergency alarm bells set off by his roommates. He had called out to them for help and appeared to be having difficulty breathing.

Between 11:01 and 11:13 a number of alarm bells were sounded by his companions. These were cut off at the nurses’ station while staff completed their shift changeover.

The men then began yelling and one said he shouted to a nurse who came by their room that Fredin needed help but the nurse told him someone would be along once nurses had finished dealing with their reports.

The nurses, who admitted the bells were turned off, said they were unaware of the emergency. The nurse who walked by Fredin’s room denied hearing anyone shouting for help.

Tilley said the jury should let the pathologist’s evidence guide them. This indicated the man died from the process of a natural disease – from excess secretions in his throat which led to respiratory problems, unconsciousness and heart failure.

“So the lack of medical attention prior to the point the nurses come in is not an issue we can deal with?” asked the foreman.

“Not in the classification,” Tilley said. “You can deal with it in your recommendations.”

Among the jury’s recommendations were a number of measures that Pearson Hospital is undertaking to prevent nurses from prematurely switching off emergency calls.

Pagers recommended

Hospital representatives said their system was being modified so all calls would be recorded on a printout showing what time they were received and the response given. Nurses would carry pagers, which would also be triggered by an emergency call, and new lighting systems will be added outside rooms to differentiate between an emergency and a routine call.

Also, nurses now have to switch off emergency alarms at the bedside, not by disconnecting them at the nurse’s station. [When I lived at GPC, 2005-2007, this was the call bell system.]

In its recommendations to the ministry of health, extended care division, the jury said the above modifications should be implemented in all extended care facilities using systems similar to that at Pearson.

To the directors of nursing in extended care facilities, the jury said one person should be available to answer all calls coming in while staff are changing shifts and that answering these calls should take precedence over reporting duties.

The jury said it should be mandatory for all registered nurses to be proficient in CPR (cardio pulmonary resuscitation) and that the ministry of health should provide the money for their training.

Joyce Fredin, who is a nurse, said she was satisfied with the jury’s recommendations into her son’s death.

“As a nurse, I am horrified that this could have happened to my son. I hope it never happens to anyone again,” she said.—Dec 2 1988 Vancouver Sun http://proquest.umi.com/pqdweb?did=171978331&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1990: A home is hard to find for quadriplegic man

A disabled man has spent over 200 days in an emergency shelter, awaiting a home.

He’s not alone.

The Vancouver man is one of hundreds of people with mental, physical or psychiatric disabilities left out in the cold by B.C.’s overheated housing market.

Quadriplegic Wayne Geer has been stuck for eight months on the waiting list that is his ticket to independence.

Geer is in line with 80 others for a 39-unit complex with 17 wheelchair suites slated for completion in Kitsilano in July.

In the meantime, Geer is forced to call Pearson Hospital in Marpole his home.

Special-needs tenants – who live on between $450 and $650 monthly disability pensions – may require units with elevators, ground- level entries and large bathrooms for wheelchairs.

Former mental patients often have to cope with landlords who don’t like “strange” tenants.

With more tenants fighting for fewer subsidized units, more disabled people are winding up in stop-gap rooming houses or emergency shelters.

“Some people are living in absolute hovels. There’s a lot of people struggling to survive out there,” says Robin Loxton of the Advocacy Access Project, started by the B.C. Coalition for the Disabled.

Al Mitchell, of the Lookout emergency shelter on Alexander Street, turned away 70 people – many of them disabled – who were looking for shelter in November and December. He hit that number with a week to go in January.

The Greater Vancouver Housing Corp. has a one-to-three-year waiting list for subsidized housing.

The Coast Foundation, which sublets units for the mentally ill, has 300 on its waiting list.

The B.C. Housing Management Commission, which attempts to match tenants and landlords on a computerized housing list, won’t even say how long its list is.

Supporters fear the handicapped will be forced out of Greater Vancouver, where their support services are concentrated. –Jan 29 1990 Vancouver Province http://proquest.umi.com/pqdweb?did=237131051&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1991: Stay at institution turned into horror show

(Copyright The Vancouver Sun)

Randy Walter was irrepressible in high school – full of laughter and full of beans. I know, because we were classmates. It’s different for Walter now.

Married 23 years, Walter and wife Evelyn, both 45, have an 18-year-old son. Walter used to be a faller, but time has been cruel. He quit his last job 13 years ago, when his balance and coordination failed and his multiple sclerosis worsened.

As the disease wasted his once-active muscles, he became progressively more paralysed. Today, he’s totally dependent on his wife, a home care aide, and lifts, pulleys and other mobility devices. He’s spent the past 10 years in a wheelchair.

“The only thing he can do independently,” says Evelyn Walter, “is think.”

The Walters maintain their loving relationship because each recognizes the need for Evelyn, an elementary school principal, to have an occasional respite from her physical and mental responsibilities.

For that reason, Randy entered Vancouver’s George Pearson Centre for a three-week stay in late August. He remained only 12 days. In a letter to that institution, Evelyn Walter writes:

“The facilities looked terrific! Swimming pool, games room, large TV screen, computer room, a bulletin board full of activities. The visit to George Pearson erased any feeling of guilt about ’sending him away.’

“And so the tale of horror begins. I took a well-adjusted, happy husband to a place where in two short weeks they traumatized him into a worthless-feeling, frustrated human being. He came home and cried in fear of what it would be like for him in the future if he could not speak out to communicate.

“He cried the next day for those he left behind. He did not dare complain while at George Pearson for fear that those who took care of him would make it worse. That’s an unspoken understanding all patients realize very soon.”

Evelyn Walter may well be right. Because of their silence, the elderly and infirm too often lack a voice.

Walter’s detailed letter (with a copy to the B.C. ministry of health, among others) covers five typewritten pages. It resulted in an especially sensitive and caring reply from associate director of nursing Kirsten Snyder, as well as a letter from assistant deputy health minister Chris Lovelace, who said the ministry had spoken to Pearson’s administration “and we feel confident that this kind of situation will not recur . . . because of your clear presentation of the facts, the hospital has been able to address the issues involved.

“The hospital has taken a number of steps that will result in a more personal and humanistic approach to persons who become residents of George Pearson Centre for a short time.”

Pearson administrator Joanne McConnachie also says: “We certainly appreciated the Walters’ willingness to come forward. It helped us identify the issues.” What was in Evelyn Walter’s letter? A bombshell:

“My husband was not called by name but referred to as ’short stay.’ In the lunchroom, he inadvertently sat at the wrong table and it was quickly pointed out that ’short stays’ eat over there.

” ‘Short stays’ do not have access to the computer room. ‘Short stays’ can look at the pool but not go in. In 12 days, he only ever saw three people swim in the pool. ‘Short stays’ do not get physiotherapy. We were told that all of the above would be accessible before he went in.”

After complaining, Walter received two 20-minute physiotherapy sessions; he gets an hour a day at home.

A television set promised “immediately” came 24 hours later. Staff shortages forced him to stay in bed each day until 1:30, and return to bed after dinner.

Six times, Walter was placed on a commode chair visible to hallway passersby. Only twice did an attendant volunteer, without Walter’s having to ask, to draw a privacy curtain.

Once, he was left on the commode for two hours, during which time the fire alarm rang – and no one came to get him.

On two of three consecutive nights the same nurse was on duty, she confused or forgot his medication.

“What if he couldn’t speak to tell someone?” Evelyn Walter asks. “Does this happen often?”

According to Randy Walter, ward staff “showed little or no regard” for patients’ dignity, allowing call-buzzers to ring incessantly – at one count, 44 times over 4 1/2 minutes.

Walter’s last day was also the last straw. Writes Evelyn Walter: “Our son was picking him up at 1:30 for an outing. (Randy) asked the attendant if it would be convenient if he got up at 1 p.m. ‘No problem,’ was the reply.

“She passed his room at 1:15 and didn’t come in. He called to her to ask if she’d forgotten and she replied that she didn’t have time. The (male attendants) would get him up.

“My husband rang the (buzzer) and when the (male attendants) came in, they said she hadn’t asked them anything. They begrudgingly got him up and into his wheelchair. He still had not been shaven, and had not had his hair or his teeth brushed. When our son arrived, his dad told him to pack up his things – he was out of there!

“We were lucky. My husband had an escape. For me, he endured two weeks of torture, but couldn’t handle it any longer.

“For those my husband left behind, I must tell his story. For those in the future, I must share my plea. This is not the only horror story. It is only ours.

“We need to have a good look at our institutions and ask ourselves if we’re keeping in touch with people’s feelings as well as their physical needs . . . Ask yourself an important question: Who will look after you?” –Nicole Parton Vancouver Sun Nov 13 1991 http://proquest.umi.com/pqdweb?did=182211311&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

1992: Quadriplegics prepared to move into Noble House: 21-unit housing co-op gives patients chance to enjoy benefits of personal privacy, freedom

(Copyright The Vancouver Sun)

Electric wheelchairs scuttle by, their whirr punctuated occasionally by a long, loud groan from a nearby coffee urn. From a neighboring television set the theme music from Jeopardy booms, almost enough to muffle the beeps and buzzes, clang and clatter that echoes from every corner of George Pearson Centre’s Ward 7.

For Jeanette Andersen, paralysed by polio from age 16, this has been home for the past 35 years.

On Saturday, she is moving out, and for the first time in her 52 years, she will live on her own.

“I’m so excited. It’ll be like having a new life,” says Andersen, a broad smile crossing her face. “A normal life.”

Andersen is one of seven quadriplegics from Ward 7 who will share the third floor of the 21-unit Stanley Noble Strong housing cooperative (Noble House, for short) in False Creek. She is also the president of the co-op board.

It will be quite a change from the wing on Ward 7 – literally Andersen’s bedroom – which she has shared with 15 other people.

There is no privacy from the eyes of the other residents, staff and visitors, save for a sliding fabric curtain.

“Sometimes there are people on the ward who are dying. That’s really hard,” she says. “You try to be normal and eat your meals and do your thing. But a part of you is so aware.”

Andersen says what she’s most looking forward to at Noble House is: “Privacy.

“It’ll be so nice to have my family and friends over and just close the door. If the kids are noisy, I won’t have to hush them. It’ll just be having people over in my own home.”

Noble House is the first co-operative to enable ventilator-dependent quadriplegics to live in completely independent suites, says Canadian Paraplegic Association rehabilitation services director Norman Haw.

Each of the four women and three men have their own suite, consisting of a bedroom, bathroom, living room and kitchen, all designed for a person in a wheelchair. As well, they will be able to activate the co-op’s elevator using an infra-red signal from controls on their wheelchairs – a first in the world, according to Haw.

Mark Alexandre, 21, is also moving to Noble House. He has lived at Pearson for about two years.

When he was 18, he dove into a shallow portion of Kalamalka Lake near Vernon. His neck was broken and he was left paralysed from the neck down.

The youngest on the ward, Alexandre is eagerly awaiting the move.

“It’s a big step,” he says. “In here, it’s easy to become isolationist. Being there, I’ll be closer to my friends. I’ll be closer to the bar.”

Alexandre, who is also a co-op board member, says he hopes the move will motivate him to return to college.

“And I’d like at one point to get some of my writing published. It’s mostly short fiction, poetry,” he says. “Now that I have the stability of having my own place, it creates this stream of consciousness that lets me think I have no barriers.” –Dawn Hanna Vancouver Sun Jan31 1992 http://proquest.umi.com/pqdweb?did=182334411&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

1992: Quadriplegics discover a rich and valuable life: Technology plus attitude equals shot at freedom

(Copyright The Province (Vancouver) 1992)

Jeanette Andersen used to think she’d never leave George Pearson Centre.

But technology and a positive attitude will allow Andersen and six other quadriplegics to move into a co-op housing complex in a couple of weeks.

The seven Pearson Centre patients, all in wheelchairs and requiring ventilators to breathe, will move into individual suites at Noble House at 6th and Heather. They will share the apartment building with 14 others, mostly seniors and single mothers.

“At one time, if you were on a ventilator it meant you had to live on an iron lung,” said Andersen, a Pearson patient since 1955.

Now, portable ventilators and infrared remote-control units allow paralyzed people to live a fairly normal life, with the aid of trained staff at Noble House.

Walt Lawrence, a consultant for G.F. Strong Centre in Vancouver, moved out of Pearson and into a similar co-op eight years ago.

“If somebody had told me 20 years ago I’d have a rich and valuable life, I would have really questioned that,” said Lawrence, who broke his neck diving into Lake Okanagan in 1968 when he was 18. “I have a rich life,” which included getting married two-and-a-half years ago.

“At first it’s devastating and it takes a while to see there are still ways to contribute. Moving into the community helped me see how I could contribute to the society that’s given me so much.”

Vancouver is a leader when it comes to boosting the quality of life for ventilator-bound people, said Dr. Michael Lapin, an internal specialist at Pearson.

“We’re the state-of-the-art in North America in terms of getting people independent and out into the community,” he said. “Ten years ago, these people would have had to stay here forever.” –Gordon McIntyre Vancouver Province Jan 31 1992 http://proquest.umi.com/pqdweb?did=238232281&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

1993: For woman, petty pace creeps on from day to day

(Copyright The Vancouver Sun)

CATHY FRENKEN, a 29-year-old Sechelt woman who once hoped to become a teacher, sits in a borrowed wheelchair, idly watching television.

Her bed in Ward 7 of the George Pearson Centre, and the few personal effects that fall within its surrounding curtain, make up her personal universe.

A ventilator breathes for her, pumping air into her lungs through a tracheostomy, or surgical incision in the windpipe.

Frenken is bored. As the world rushes by outside, the 17 ventilator-dependent residents of the vast open ward live quietly within the institution’s rhythms – a friend’s visit, some physiotherapy, a nurse with pills.

She feels herself vegetating. Her bedside clock flashes square red numerals that mark the passage of wasted time.

“I’ve been sitting in front of my TV for four months, 12 hours a day,” she says in a frail voice.

“I came here to get some independent living skills and get on with my life, but they can’t even get my chair.”

Frenken says Pearson’s staff have been slow to get her an appropriate wheelchair, have failed to help her occupy her mind, and are lax in planning her rehabilitation.

“All I’ve heard is, ‘I’ll look at it next week’ or ‘I’m very concerned about your condition.’ I have to fight for every little comfort that should be a right.”

Frenken has a rare condition called hyponatremia. Her body is unable to regulate the sodium in her blood.

In an acute incident last summer, her sodium level plummeted and she went into respiratory and cardiac arrest. She survived four bouts of pneumonia, emerging weakened and disabled.

Her intellect is intact, but her physical state is like that of a person rendered quadriplegic by an accident.

Joanne McConnachie, the centre’s administrator, said that, after Frenken recovered from last summer’s acute episode, she was sent to Pearson because it is the only Lower Mainland institution set up for ventilator-dependent people.

Dr. Michael Lapin, Pearson’s medical coordinator, looks after the residents of Ward 7.

He said the complaints of Frenken and her mother, Johanna, are partly motivated by anguish over the young woman’s suddenly becoming disabled.

“It’s a grief reaction. There’s a lot of anger, and it comes out in various ways. There has to be somebody at fault, and so therefore Pearson is.” [This is classic blaming the victim bs.]

Lapin said getting Frenken the kind of wheelchair she needs takes time. Arranging a wheelchair-accessible apartment and round-the-clock attendant will likely take even longer.

He cannot predict how full a recovery Frenken will be able to make. That varies from person to person, he said.

In a December letter to Frenken, McConnachie apologized for Pearson staff members, who described the centre to Frenken before she was admitted. For some reason, they exaggerated what they would be able to do for her. [There have been recent, 2010, cases of North Shore VCH employees lying to patients there that GPC is a rehab facility.]

Lapin said the Frenken family “expected us to have a fleet of wheelchairs waiting. We don’t.”

McConnachie acknowledged that living on an open ward is far from ideal, and described Frenken as “a very active, intelligent woman with her whole life ahead of her.”

Frenken charges that Pearson did not prepare to meet her needs, even though staff had a month’s notice that she was coming. She characterized the centre’s problem as “a lack of organization. People are not dedicated or ambitious.”

Lapin said Frenken has been receiving three or four times as much physiotherapy as other residents get, although pneumonia and an infection have interrupted it at times.

He said the kind of custom-built wheelchair she needs could cost as much as $38,000. To order a piece of equipment the price of a luxury car, funding must be arranged either privately or through a government department or agency.

Lapin said just being fitted for a chair takes six to 12 weeks, and another three months elapse while the chair is being made.

Johanna Frenken said her daughter has volunteered for years, working at the Vancouver Neurological Centre and tutoring disabled children in the family home.

“She has a heart of gold, and now that she herself is in a condition like this, she gets such a rotten deal.” –Vancouver Sun Feb 6 1993

http://proquest.umi.com/pqdweb?did=182865831&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1993: Rotary House provides future for MS patients

(Copyright The Vancouver Sun)

EVERY NIGHT before he went to sleep, Jerry Pike tried to push aside the nagging fear that nobody would be able to help him if he happened to choke during the night.

These days, he sleeps undisturbed, knowing help is always close at hand.

Pike, 29, has multiple sclerosis, a degenerative disease that attacks the body’s central nervous system. The disease has already robbed him of the use of his limbs and has progressed to the point where swallowing is sometimes difficult.

Six months ago, Pike lived in a group home and faced a future in an institution or extended care facility because of his acute and progressive medical care needs.

Today, thanks to the generosity of the Burnaby Rotary Club, along with the hard work of the Vancouver Resource Society (VRS), Pike’s future – and that of his four roommates – has brightened considerably with the construction of a house in Burnaby.

Unlike other homes operated by the VRS, Rotary House, as it is called, is staffed 24 hours a day and includes the additional services of a registered nurse.

According to VRS official Murray Hamilton, it is the society’s most ambitious effort yet in its 20-year campaign to provide accessible housing, and support services, to people with physical disabilities.

“In most of our other group homes, people are able to function – they’re not people that would generally be institutionalized – but several of the people that live here have come from an institutionalized setting,” says Hamilton.

“And because MS is a degenerative disease, the care they require is intensive and will get even more so as time goes on, which is why it’s harder for them to continue to live in the community and which is why this house is so unique.”

Pike relies heavily on a wheelchair equipped with a sip-and-puff system for his independence, which he says is greatly enhanced by living in the house.

“This is right next door to paradise,” says Pike.

“And being here gives me more security. In case I happen to choke, or whatever, I know someone’s here.”

One of Pike’s roommates, Gerry Akerboom, is more succinct about his feelings.

“I am no longer part of the herd,” says Akerboom, 39, who also has MS.

His deteriorating condition forced him to move from a community group home into Pearson Hospital, where he stayed for approximately one year before moving into the group home about four months ago.

Hamilton says the residents can now make choices about their own lives, something which was foreign to some of them.

“They were really overwhelmed at first, because in recent years they haven’t been able to make their own choices,” says Hamilton.

“They’ve been told when to go to bed, what time to get up, when to have breakfast, lunch and dinner, that sort of thing.

“Here they can make those kinds of choices; this is their home.”

Currently, VRS operates 19 group homes in Vancouver and Burnaby, in addition to two apartment buildings.

Hamilton says the society is moving toward integrated projects in the future.

“We’re looking at developing an apartment project which would provide an integrated setting,” says Hamilton.

“We would try to incorporate a cross-section of the community where we’d have seniors in the building, single parents in the building and some of our clients who are dealing with a physical disability.” –Vancouver Sun April 2 1993 http://proquest.umi.com/pqdweb?did=182937941&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

1993: $2, 229 A Small Price to Pay For Freedom

By Rick Watson [who was born with cerebral palsy]

We have all heard the expression sending good money after bad, something governments often do in an attempt to fix mistakes. Let me give you an example of the opposite scenario in which our provincial government and its bureaucracy is refusing to spend a small amount of money that would save hundreds of thousands of dollars in the long run.

Harvey Kane lives at Pearson Hospital in Vancouver. He is an artist of native origin. He does his artwork with the help of a computer graphics program, and currently ha a display at the PNE’s First Nations pavilion.

Harvey became a high quad (paralyzed from the neck down) 14 years ago as the result of a car accident. He has spent make of that time trapped at Pearson and it was only in December 1992 that Harvey got a chance to escape and live in the community.

More than eight months later he’s still waiting to escape.

Last December, Harvey found a unit in the Lu’am Housing Society apartment building. It was suitable to Harvey’s needs, but he needed some sort of lift to get him from his wheelchair into the bathroom. The most effective lift will cost $8,000. Through hard work on behalf of Harvey, his friends, the community and various organizations, $5, 771 was raised to go toward the lift, including $3,000 from the ministry of social services. The ministry donation was based on a cheaper model of lift, which would not meet Harvey’s requirements.

Eventhough the unit was built according to the handicapped section of the uilding code, modifications were required to make the apartment “functionally accessible.” New ramps were built and other renovations made. After that, a suitable model of attendant care had to be planned out. Now, only another $2, 229 is needed to install the lift. The use of this particular lift means that Harvey would require only one attendant instead of two; another saving to the provincial government.

Many years ago Grace McCarthy, the minister of human resources, publicly announced a commitment on behalf of the province to downsize major institutions. This commitment was reaffirmed recently by Health Minister Elizabeth Cull, with an emphasis on closing Pearson Hospital by the year 2000. Now the ministry’s communications department is denying any intention of downsizing Pearson Hospital. [Not long after this Pearson was down-sized.]

I think it is incumbent upon the present government to respect and honor the commitment our previous government—not the mention its own—and do so by making the dollars available (however small in Harvey’s case) to make the closured of Pearson Hospital happen. [Years later a coalition of the BCGEU and some Pearson residents prevented its closure.]

On July 28, a friend of Harvey’s wrote a letter on his behalf to Ms. Cull, as well as ministers Joan Smallwood, Glen Clark, and Premier Mike Harcourt. It appealed to their wisdom to come up with this last bit of money, which would enable one more person to make the transition from Pearson Hospital to the community. To date, the only response has been a phone call from some lower bureaucrat who merely indicated he knew it was a problem—but nothing was done.

Harvey is currently filing a formal appeal with the social services ministry. He is only one patient trying to get out of Pearson Hospital. What about the hundreds of patients after him, also trying to move into the community?

For a simple investment of $2, 229 is this government not willing to save the taxpayers of this province the $450-plus a day it costs to keep one person in Pearson Hospital? Vancouver Province August 1993 [transcribed from microfiche stored at Metrotown Library.]

1993: Watson’s view of Pearson `not shared by residents’

(Copyright The Province (Vancouver) 1993)

Re Rick Watson’s Aug. 24 column “$2,229 a small price to pay for freedom”:

George Pearson Centre is not a hospital but a long-term care residential facility run by the B.C. Rehab Society. The 182 multi- disabled people who are currently living here are residents, not patients. [George Pearson Centre was first called the George Pearson Hospital for the Physically Handicapped {As can be see on signs still hanging in GPC.}. It is legally a hospital under the BC Hospital Act. The staff still {2010} refer to residents as “patients”, though undoubtedly many people living their want to be called “residents. VCHA took GPC away from the BC Rehab in 2002 I think.]

The words Mr. Watson used of residents being “trapped” with no chance to “escape” leaves a mental image of bars on the windows and guards at the door. Nothing could be further from reality. Pearson has always given encouragement, provided opportunities an offered full support to any residents who express the desire to move into the community. [As anyone who tried to get out of GPC in the 1970s and 1980s knows {this includes friends of Ms Kjellbotn} know for personal experience this is not true. In fact the second biggest barrier {after the relevant BC gov ministries}to citizens with disabilities getting out of GPC up to that time and beyond was the staff and management of GPC.]

Mr. Watson’s statement that Pearson should be completely closed down is certainly not shared by a great many residents. Many of us remain here by choice. [If there’s very little or no supports voters need to survive outside of GPC how can one that “many” residents remain in GPC “by choicr”?]

The sense of community, the many and varied services provided and the beautiful park-like setting all contribute to a quality of life we enjoy. [See the many sections before and after this one about GPC to understand how inaccurate this statement is.]

Joy Lynn Kjellbotn [Ms. Kjellbotn is a polio survivor who has lived at GPC since the early 1970s. She is still living there as of July 2010.]

President, Resident Council, [I’m not sure how long after this but eventually GPC stopped funded an assistant for the council, which was essentially for {sometmes} severely disabled council members to carry out the logistics of a residents council.]George Pearson Centre –Vancouver Province Sep 3 1993 http://proquest.umi.com/pqdweb?did=231481851&sid=4&Fmt=3&clientId=58962&RQT=309&VName=PQD

1993: “The organizational learning espoused by B.C. Rehab’s [ which ran GPC from 1984 to 2001] statement of planning beliefs and values and by the learning perspective, generally, assumes that employees have skills in strategic thinking. The development of these skills requires a climate which encourages individuals to think critically and retrospectively about the organization’s previously attempted behaviours and strategies (Mintzberg, 1990.) Traditionally George Pearson Centre’s organizational climate has not been conducive to the development of these skills…

Examination of [George Pearson Centre’s] established policies and procedures in concert with simple observation of the physical and social environment hints at a culture which supports a paternalistic, control orientation and resists attempts to deviate from the status quo.

Despite the fact that [George Pearson Centre] is apparently refocusing its service delivery model away from a medical or disease model, many artifacts of this orientation persists. Most noticeable is the sign in front of of the building which refers to the facility as ‘George Pearson Hospital’ despite the fact the name changed years ago to ‘George Pearson Centre’.

A number of [George Pearson Centre’s] resident care policies and procedures reflect the medical model’s protective attitude—its need to control and make decisions for residents. One artifact which reflects this aspect of culture is the strong presence of medical personnel in the ward teams and the time-honoured practice of professionals planning for residents, rather than planning in equal partnership with residents…

these examples in concert with numerous others may be indicative of a dominant culture explicitly opposed or passively resisting fundamental change.”   –p114 Participation In and Employee Attitude Towards Organizational Change: a Case Study of Strategic Change at George Pearson Centre by Nancy Margaret Clay B.S.W. UBC June 1993 [p113-115] [italics in text.] https://circle.ubc.ca/bitstream/handle/2429/2264/ubc_1993_fall_clay_nancy.pdf?sequence=1

1996:“Tours came around Woodlands from many foreign countries because it was recognized as being in the forefront of developing programs and services for people with mental handicaps. Then, in the late 1950s BCAMR brought in a consultant from the US who preached confrontation. From that point it was believed that any institution was bad and there couldn’t possibly by anything good about it. Some parents were ready to hear this. They thought if they got on the bandwagon then something good might happen for their child–you can’t blame them really. But we had a good relationship with the original group of parents.” Dr. Pauline Hughes as quoted in Memories of Woodlands by Val Adolph, 1996. [This book is a string of excerpts from interviews Ms. Adolph did with former Woodlands managers and employees. It doesn't state exactly when the interviews took place. This book was published by the BC Ministry of Social Services. It includes only a few comments from one former resident.]

1996: In the introduction of In the Context of its Times by Val Adolph, Theresa Kerin, Assistant Deputy Minister, Community Support Services, Ministry of Social Services stated: “It has been said that a society is judged by how it treats its most vulnerable citizens. If that is true, British Columbia must be very high on the list of civilized societies.”

1996: Bev & Allison’s Story Part 1 Part 2

1997: A doctor named Eric Oxley castrated a 20 year old mentally challenged man at the behest of this man’s mother. The mother and the doctor claimed they didn’t know this was a crime. Neither the doctor nor the mother spent any time in prison. In 2002 the BC College of Physicians and Surgeons ordered Dr. Oxley to take an ethics course, check with a lawyer next time to find out if it’s legal to castrate somebody, don’t do it again and to pay the College a $5,500 fine.[ https://www.cpsbc.ca/files/pdf/2002-01-07-oxley.pdf  ]

Early 1990s-2002: “Ms. Roch[Director of BC Ministry of Educaion Special Needs Branch 2002 {?}] acknowledged that the Ministry [of Education] recognized that its accountability mechanisms were poor and that the delivery of services to special needs children varied throughout the Province. The Ministry also recognized that its information regarding what services were being delivered, their effectiveness, and special needs student progress was poor.” Moore v BC [p46]

“In cross-examination, Ms Roch agreed that the data the Ministry [of Education] collects does not allow it to determine whether specific programs are adequate to meet a special needs student’s needs.” Moore v BC [p56] [From context it is unclear if this is referring to just before 1995 or after up to 2002 also.]

“[Ms Roch] agreed that none of [the Ministry of Education] tools assessed the effectiveness of programs for learning disabled students and the Ministry has not done any real monitoring of the effectiveness of programs for learning disabled children in British Columbia.” –Moore v BC [p65] [Context appears to be referring to 1995-2002 period]

“Based on all the evidence, I [BC Human Rights Tribunal member Heather M. MacNaughton] find that the Ministry [of Education] instituted the HILC cap to control any increase in the number of students designated in the disability categories subject to it. The Ministry did so despite knowing that the cap is below the actual incidence of students entitled to supplemental funding in the disability categories concerned, and knowing the percentage of [Severely Learning Disabled] students in the Province far exceeds the 1%-2% prevalence figure for this category…the Ministry knows that the existence of the HILC cap is a disincentive to districts to designate students above the cap because no further funding will be received even though services must then be provided. This results in under -reporting of the actual incidence of students in the capped category.” Moore v BC [p80]

http://www.bchrt.bc.ca/decisions/2005/pdf/Moore_v_BC_(Ministry_of_Education)_and_School_District_No_44_2005_BCHRT_580.pdf

Late-1990s to 2004: both the NDP and Liberal governments forced the parents of autistic children into court, no doubt at huge expense to the tax-payers, to prevent effective medical treatment for autistic children from being covered under BC’s MSP. [For an important part of this story find the book Science for Sale (2003)by Sabrina Freeman and study FEAT BC’s website http://www.featbc.org/  and the video Medicare's Orphans http://www.medicareforautismnow.org/the-film/medicares-orphans/ ]

1998: “Also in March 1998, the Ministry’s [of Education] communication plan for the release of the Desharnais Report ['Review of Learning Assistance Services', completed July 1997] cautioned:

*Special education parents are well organized and vocal. They can be expected to react with an ‘I told you so’ to the Review.

*The findings of the Review confirm anecdotal information that supplementary school education support services have eroded in school districts in recent years of fiscal restraint, leaving Learning Assistance Teachers to assume responsibility for greater numbers of students with a greater range of special needs.

*The ‘network of special education supports’ described in BC’s Special Education Policy as being necessary to ensure the successful inclusion of students with special needs, has diminished.” –Moore v BC [p58-59] http://www.bchrt.bc.ca/decisions/2005/pdf/Moore_v_BC_(Ministry_of_Education)_and_School_District_No_44_2005_BCHRT_580.pdf

1998: by Rob Wipond

Originally published in Monday Magazine, 1998.

A FORMER chief of psychiatry at Eric Martin Pavilion psychiatric hospital whose licence was permanently revoked in Ontario after he was found to have drugged and repeatedly sexually assaulted a patient, is currently practising in Victoria.

Dr. Frank Gordon Johnson worked in Ontario during the 1970s before moving to Victoria. He maintained a private psychiatric practice here from 1979-91, was a staff member of the Eric Martin Pavilion during that time, and held the position of EMP chief of psychiatry from 1983-89.In 1993, the Ontario College of Physicians and Surgeons found Johnson guilty of medical incompetence and sexual impropriety, and declared him “unfit to continue in practice”.From hospital notes as well as patient and expert testimony, the Ontario tribunal concluded that Johnson had kept Jean Halliwell in a London, Ontario, psychiatric hospital for months at a time during the ’70s, and that he ignored professional criticism about the “wide variety and large doses” of drugs he was administering to her.The drugs put Halliwell into a “zombie-like” state, according to hearing testimony, while Johnson repeatedly forced her into oral sex and intercourse. Another former patient also testified to having been repeatedly assaulted by Johnson in a similar manner.

Yet in March of this year, Johnson was granted a one-year renewable licence to practise in this province by the B.C. College of Physicians and Surgeons.“My lawyer has asked that any questions get directed to him,” said Johnson last week in reply to a request for an interview. His lawyer, however, did not return calls. Halliwell’s lawyers also advised her not to speak, as she is currently suing Johnson. Representatives from the Capital Health Region and B.C. Ministry of Health denied having any responsibility or authority in the matter. Even Sandy McLellan of the Victoria Women’s Sexual Assault Centre declined to comment on the situation.

But B.C. advocacy groups for survivors of psychiatric treatments aren’t mincing words.“I’m angry and disgusted,” says Gerry McVeigh of Victoria’s Anti-psychiatry Movement for Alternative Approaches and Directions, pointing out that in his new private practice, Johnson could be treating victims of sexual abuse.“It’s astonishing to me that they’d let him practise,” says Irit Shimrat of Vancouver’s Lunatics Liberation Front. “I think it’s really strange and grotesque that B.C. doesn’t think there’s something wrong with that.”

According to the B.C. College of Physicians and Surgeons, the physician-run organization with authority for licensing and maintaining professional standards, Johnson is “a member in good standing”.

Deputy registrar Morris Van Andel says the physicians’ organization granted the licence after an investigation including three expert assessments and an interview with Johnson. Previous precedents in B.C., the fact the Ontario verdict related to events from 20 years ago, and the psychiatrist’s clean record in Victoria previously, all played a role in the decision, Van Andel explains.The Ontario case was not considered in detail, and such out-of-province disciplinary actions are never put on a doctor’s publicly available record in B.C., Van Andel confirms. He notes that regulations and standards differ from province to province, and when a licence is revoked elsewhere, it doesn’t necessarily mean the doctor will lose his or her licence–or be refused one–in B.C.As for Johnson’s record in Victoria, for the public, the question is largely one of faith. Most professional records regarding Johnson’s work in Victoria are confidential, and according to Janice Martinez, regional director for mental health, actual information on sexual abuse allegations within Eric Martin Pavilion would be difficult to gather because it would be scattered through a variety of records–virtually none of which are available to the public. Recent complaints lodged with the B.C. college would not be public information, either.

In any case, Van Andel says that in B.C. and most other provinces, suspensions beyond three years are uncommon, and permanent revocations are reserved for only the most extreme cases.“If [Johnson] had committed the same offence here, he would have already been practising,” says Van Andel.In fact, Van Andel feels the Ontario College was out of line when it revoked Johnson’s licence with no opportunity to re-apply for five years.“A suspension of practice for five years is an extremely heavy punishment,” he says. “You can kill somebody and be out before then.”

He adds that the Ontario college is “very aggressive” in cases like Johnson’s, and calls their “zero tolerance” approach “somewhat hawkish”.“That’s a fairly interesting statement for someone to say,” responds Jill Hefley of the Ontario College of Physicians and Surgeons. “I’m not sure whether the public is well-served by allowing physicians who’ve been found guilty of sexual abuse and medical incompetence to continue practising.”

McVeigh is blunter: “My god! What do you have to do to get your licence permanently revoked in B.C.?”He points out that it’s one thing to allow someone found to have committed sexual assault the right to rehabilitate and start a new life, but quite another to grant that person a licence to practise psychiatry.“In the mental health system psychiatrists are the most powerful people there are,” argues McVeigh. “All [psychiatric patients] are in a very vulnerable state, and suggestible.”

Despite such criticisms, Van Andel says the B.C. college is “here to represent the public, not to protect doctors”.Most college investigations are confidential, with details unavailable to reporters even under B.C.’s freedom of information laws. One of the few publicly available examples of a B.C. college reprimand in a severe case involves Victoria native Dr. James Tyhurst, former head of the UBC department of psychiatry.

In 1981, a female patient testified that her “therapy” involved having to strip naked, kneel and call Tyhurst “master”.The college interviewed the psychiatrist and then issued a letter of reprimand, advising Tyhurst that “the degree of subjugation was unwarranted and its effectiveness questionable”.

Tyhurst didn’t stop practising until 1991, when four more female ex-patients testified during his criminal trial to being subjected to hundreds of whipping sessions and forced oral sex.

Also revealing is the B.C. college’s own 1992 province-wide study of sexual misconduct. In it, 3.5% of B.C. physicians (psychiatrists themselves were about one per cent lower) admitted they’d had sex with a person who was their patient at the time. Extrapolating from that statistic, there would be dozens of doctors and psychiatrists in Greater Victoria who would admit to having had sex with patients they were treating.

In the report’s introduction, the college-appointed team of researchers state that the problem of sexual misconduct in B.C. “is serious”–but not primarily because of the actual incidence rate of exploitation.Rather, “[I]t has eroded the public’s confidence in the medical profession and it has placed doubts in patients’ minds about their trust in their physicians and about the profession’s ability to ‘police’ itself,” the report’s authors declare.Shimrat says the B.C. college’s handling of the Johnson case reveals a similar “self-centredness”: “It shows horrible disrespect to potential patients to have [Johnson] practising here.” http://robwipond.com/?p=56

1998: `Get me home’ : It’s costing more to keep Gordon Awde in hospital than to let him go home. His situation is far from unique

Copyright The Province 1998)

If Gordon Awde could go home, he would save taxpayers $500 a day.

But Awde and his team of caregivers are fighting against a bewildering health system that is keeping him — and many others — in institutions rather than helping them get home.

For the past year, Awde has been living at Vancouver’s G.F. Strong Rehabilitation Centre, recovering from a rare disorder that has left him quadriplegic. Although he may recover completely, doctors don’t know how long it will take. But Awde’s team of caregivers do know he is well enough to live outside an institution, with the daily support of home-care workers.

To live safely at home near Mission, Awde’s team says he needs the money to pay for eight hours of care a day. The regional health board says it will pay for five. At the government’s rate of $25 per hour, Awde’s daily care cost would be $200. Instead, he is stuck in a bed at G.F. Strong that costs the government $688 a day.

“Get me out, get me home,” said Awde, 50. “I shouldn’t be fighting for this — if I go home, the bed is open for someone else who needs it and it costs less.”

“And it’s not just me. How many others are out there who could be at home and saving the government money?”

Awde believes that, if he could go home, he could get back to work and pay his own way. Institutionalized, he can do nothing.

“I have to fight — I have a wife and a family — I’m father to two boys. My mind is still functioning and I believe I can work. If I have to live in an institution, I think I would give up. I don’t have that kind of strength.”

Wendy Carmichael, Awde’s social worker at G.F. Strong, has spent a frustrating few months trying to get the Fraser Valley Health Region to pay for Awde’s home-care needs.

Under a provincial health ministry program, Awde is eligible to hire his own caregivers and stretch the money for eight hours of care to get the 11 hours he really requires, she said. But so far, the region has said that five hours is all it will cover.

“What kind of statement is it, when Mission won’t cough up 75 bucks so that Gordon can go home?” Carmichael said. “How can they think it’s OK to leave him in an institution? That makes me feel ashamed.”

Carmichael is also working with another G.F. Strong patient who wants to go home to Kamloops — but that region says it will cover only four hours of care, and if the patient needs more he should move to Vancouver.

The health ministry lists home care as a “core service,” which means all regions must provide it, said Sally Hamilton, a ministry consultant for acute and continuing care.

“The whole philosophy is `closer to home,’ and the health boards should buy into that,” Hamilton said. “The expectation is that every health authority will offer the program as part of their services.”

Advocates for people with disabilities say some health regions don’t offer the program and others accept people but won’t agree to pay for more than four hours.

“If people are going to go home, they have to be safe and they have to have a reasonable quality of life,” said Christine Gordon, of the B.C. Coalition of People with Disabilities.

“What most people are finding is they can’t get past four hours without a huge amount of advocacy, and even then it’s very difficult.

“Without providing a safe number of home-care hours, the government is forcing people to stay in institutions.”

Roz MacKinnon, director of community health programs for the Fraser Valley region, said the region is required to provide only four hours of home care per person, and if people need more, they may have to look elsewhere. “The government transferred the responsibility and gave us this money and, in some cases, the money has not matched what the services require,” MacKinnon said. –Wendy McClellan Vancouver Province April 1 1998 http://proquest.umi.com/pqdweb?did=228468311&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

1998: Ministry helps Awde but he’s one of many in the same fix

(Copyright The Province 1998)

The B.C. health ministry said yesterday it is working with health regions to ensure they provide the home-support programs residents need.

“Obviously the guidelines are being interpreted differently by some regions and we have to clarify,” said ministry spokeswoman Carol Swan.

Yesterday, The Province reported that people with disabilities who need more than four hours of home care a day often are unable to get their local health region to approve the time.

And if they can’t get the hours they need, they face moving into an institution — at a much higher cost to taxpayers — or living unsafely in the community.

Mission resident Gordon Awde is stuck in a $688-a-day bed at G.F. Strong Rehabilitation Centre in Vancouver because the local health region says it can’t afford to pay for more than five hours of care a day even though Awde’s care team says he needs eight — a cost of $200 a day.

The ministry said it has intervened to help Awde go home.

But he is not the only one who can’t get enough hours to live safely in the community. Christine Gordon of the B.C. Coalition of People with Disabilities did a quick poll yesterday and found 50 people fighting for more home-care hours.

“Those are only the ones who called us for help,” Gordon said.

She said the problems increased when the health ministry handed regions their own budget money last April, along with the responsibility to provide core services.

Before that, if regions spent more money than expected on home care, the government paid the difference. Now the regions have to cover the services within their budgets.

For home care, Victoria pays a maximum of four hours a day per person, even though many require more. –Wendy McClellan Vancouver Province April 2 1998 http://proquest.umi.com/pqdweb?did=228469881&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

1998: Bureaucracy frees G.F. Strong patient: Bickering over home-care cost kept disabled man in more costly institution

(Copyright The Province 1998)

Gordon Awde is going home.

After a month of negotiations between provincial and regional health officials, the Mission resident has been approved for the home-care hours he needs to live at home.

The delay in allowing him to leave Vancouver’s G.F. Strong Rehabilitation Centre cost taxpayers an extra $15,000 for his care.

“I feel great,” Awde said yesterday. “I’m going home.”

Awde, 50, has been living at G.F. Strong for 14 months, recovering from a rare disorder that has left him quadriplegic. Although he may recover completely, doctors don’t know how long it will take. But Awde’s team of caregivers know he is well enough to live outside an institution, with the daily support of home-care workers.

Awde’s care team at the institution told the South Fraser Health Region, which is responsible for approving home-care money, that Awde needs eight hours of care a day to live safely at home.

At the government’s rate of $25 an hour, Awde’s daily care cost would be $200. But until late Wednesday afternoon, the regional health board refused to pay for more than five hours of care a day, leaving Awde stuck in a bed at G.F. Strong that costs the government $688 a day.

After The Province told Awde’s story April 1, the health ministry promised to intervene to ensure Awde received the help he needed to go home. Ministry officials said the region had been told to solve the problem by Wednesday.

On Wednesday afternoon, health board representatives met with Awde and his care team at G.F. Strong and agreed to pay for seven hours of care a day.

“I can live with seven hours — it’s not perfect, but I can manage,” said Awde, who hopes to leave G.F. Strong on May 15. “I’m ecstatic. I can get out of here. My only concern is, what about the others? Who’s going to help them?”

When Christine Gordon of the B.C. Coalition of People with Disabilities read about Awde’s struggle, she began working with him to fight for the hours he needed.

“This was a really complicated negotiation,” she said. “Trying to get communication established between the care institution and Gordon’s home region has meant getting people to talk where they never have before.

“We’re all struggling with regionalization, and Gordon’s case really highlighted that. But he’s not the only one.”

–Wendy McClellan Vancouver Province May 1998 http://proquest.umi.com/pqdweb?did=228519511&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

1998: Board refuses to hire teacher in wheelchair: Despite letters of praise and high grades, she’s ‘not the best candidate’

Copyright The Province 1998)

Johanna Johnson was good enough to be a poster girl for the Vancouver school board, but she says it won’t hire her as a teacher because she’s in a wheelchair.

Now she is filing a complaint with the B.C. Human Rights Commission accusing the school board of discrimination.

“The most frustrating thing is they won’t tell me why — I can’t even guess,” said Johnson, 25, a volunteer in two Vancouver elementary schools.

For months, Johnson negotiated with the school board on how she could work as a teacher. She knew a full-time job was unlikely and some schools would be inaccessible to her. But she was willing to work on-call wherever she could and bring her own attendant to act as her hands.

“I said I would do anything,” Johnson said. “Ever since I was little, I’ve wanted to be a teacher. I know it’s a situation people aren’t used to, but I’m willing to do what I can to make it comfortable.”

Johnson — a quadriplegic who requires a ventilator at night to breathe — was devastated when told she wasn’t getting a job.

“My ability on paper is as good as any of my classmates,” she said.

“I have an excellent transcript and fabulous recommendations from schools where I’ve worked.

“It looks like there’s no other reason I wouldn’t be hired except the wheelchair.”

Johnson was 12 years old when hit by a car while crossing the street. She spent a year in hospital, and when she went home, her parents battled the school board to accept their daughter into regular high-school classes at Point Grey secondary in Vancouver.

In Grade 10, Johnson appeared in a school board video about how students with disabilities are just regular kids. During high school, she was also invited several times to talk to teachers about students with special needs. She graduated with honours and a scholarship in 1990.

At the University of B.C., Johnson specialized in mathematics and fine arts. She was an A student and finished her education degree last year. Her resume includes a thick pile of letters praising her teaching skills and her abilities as a role model for students. There are also thank-you letters from the Vancouver school board.

At a meeting with the school board last month, Johnson said associate superintendent Bruce Avis wouldn’t tell her why she didn’t even get on the on-call teacher list.

Christine Gordon, an advocate with the B.C. Coalition of People with Disabilities who attended the meeting, remembers that Avis said they were looking for teachers with special training in physical education, music and art.

Yesterday, Avis had a different list: French immersion, special education, industrial education and physics.

“We felt she was not the best candidate for the jobs available,” Avis said. “We believe the employer has the right to pick who is needed and we don’t have to tell people why they weren’t picked. If we did, we’d have to do the same for everybody.”

Gordon said Johnson has worked with the school board for years, teaching students and teachers about disabilities.

“I would have expected Johanna to be greeted as a partner,” Gordon said, “but the door was firmly shut and there was no talk about what could be possible in the future.”

Said Johnson: “I know I would regret it if I didn’t fight — I’ve got nothing to lose. Even if it doesn’t work out, hopefully people who come along after me will be treated a little more fairly. At least it will make people think.”–Wendy McClellan Vancouver Province Oct 8 1998 http://proquest.umi.com/pqdweb?did=228723881&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

1998: “Initially 50 out of 150 residents at the George Pearson Centre expressed a desire to move to the community.” –Peer Support: Building Individual and Community Capacity: Evaluating Two Smart Funnded Peer Support Projects Foncusing on People with Disabilities by Lorna Romilly [June 2003] p13 http://www.smartfund.ca/docs/disabilities_peer_support_evaluation.pdf

1999: No helping hands for Cindy: Her ‘independence’ led to paraplegic losing home care

(Copyright The Province 1999)

Cindy Milligan would rather scrub her own bathtub, wash her own floors and heave her own clothes from washer to dryer.

She can do everything else herself, even though she needs a wheelchair to move and has a rod implanted in her body to keep her spine straight.

For seven years, Milligan had been able to live independently in her rented Abbotsford apartment because of two hours of home care every two weeks to help with the chores she can’t manage.

“I wish I could do these things myself, but I just can’t,” said Milligan, 29, who is paraplegic and suffers from spina bifida, scoliosis and hydrocephalus.

Then officials in the Fraser Valley Health Region cancelled Milligan’s home care to save money. And she’s not the only one. In her region alone, 340 people have lost their home care.

Roz MacKinnon, director of community health programs for the Fraser Valley region, said the health board no longer provides home care for people who don’t also require “personal care.”

If Milligan needed someone to wash her back or brush her teeth, she could have kept her hours.

Peter Van Rheenen, the health ministry’s director responsible for the Fraser Valley, Thompson, Okanagan and Kootenay regions, said yesterday the government approves of a provincewide “refocusing” of home-care services.

“This is not the removal of services. It’s identifying a priority,” Van Rheenen said.

He said that if a person with disabilities doesn’t need personal care, “it suggests a level of independence.”

“Home care is in place to provide health support programs to keep people in their homes. It isn’t a housekeeping service.”

Said Milligan: “I don’t want help from the region, but there’s nothing else I can do.”

She fought hard for her independence, learning to drive a specially equipped vehicle to do her own shopping and get to appointments.

Although she is currently on long-term disability benefits, she has worked in the past as a receptionist and clerk.

MacKinnon said the region’s home-care costs were too high last year and were expected to increase again. The region spent $14 million last year — $1.8 million more than budgeted. She said the region has set this year’s home-care budget at $12.2 million and, with the changes to the program, expects to show a small surplus.

“A number of people [who were cut off] have complained, and they have all been investigated,” MacKinnon said. None has been reinstated. “They didn’t meet the new [criterion] that has been imposed across the region.”

Milligan said region officials have suggested church members should help her, but she doesn’t attend church.

All of her able-bodied friends have their own families and jobs, and housework to handle.

One official suggested she drive to a nearby care facility and use a bath there rather than dirty her own.

“I’ve never had to be in an institution — I’ve always managed. I just need a little bit of home support,” said Milligan, whose family lives in 100 Mile House.

A spokesman for the Vancouver/Richmond Health Board said the region has no intention of cutting home care to residents who only need help with housekeeping or meal preparation.

Christine Gordon, an advocate for the B.C. Coalition for People With Disabilities, said health regions across the province are cutting home-care programs to save money without considering the effect of their actions on people who need the services.

“There are millions of home-care stories in this province,” Gordon said. “This is the way regions are saving money: At the bottom line — and the bottom line is a person like Cindy.

“They just cut everybody off — no excuses, no nothing. Cindy was just a name on a chart.”

Many regions have no appeal process and the ministry doesn’t like to step in and overturn regional policies, Gordon said.

And since the health ministry divided the province into 19 regions, it has become impossible for advocates to keep track of home-care problems.

Six months after Milligan’s care was cut off, the health region sent a worker to reassess her needs.

Milligan has been assessed five times in 10 years. Each time, the report showed she needed more home care than she was getting.

Meanwhile, Milligan’s 79-year-old grandmother has been doing what she can to help.

“I’m just fighting like heck to get it back — I don’t have a lot of options,” said Milligan.

“I thought they would come to their senses. This has never happened before. I didn’t know what to expect.”–Wendy McClellan Vancouver Province June 23 1999 http://proquest.umi.com/pqdweb?did=228322351&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

2000: Fighting for disabled-friendly housing: Resource Society helps build homes for people with severe disabilities

Copyright The Province 2000)

Imagine your home as the enemy.

Not the kind of phony Hollywood horror of flying furniture and compacting walls, but a real nightmare of daily living in a world stacked against you.

Ken Fraser understands. One minute the executive director of the Vancouver Resource Society was a typically testosterone-fuelled young man living in Pemberton, the next someone whose legs no longer followed orders.

“I dove into a pool when I was 21 years old,” recalled Fraser.

Simple, painful and irreversible.

Now, all these years, bumps, scrapes and falls later, Fraser is executive director of the organization that helps build housing for those who move at a 33 rpm pace in a 78 spinning world. It’s tough but the smiles the Vancouver Resource Society produces for its 100- plus clients last for miles.

When he was first confronted with life in a wheelchair in the early 1980s, the world was a less disabled-friendly place than it is today. Fraser drew on his courage, plus support from wife Leanne, family and friends to go on. But for others less blessed, there was and remains considerable prejudice and physcial barriers to overcome.

“Who’s to say that when you can’t look after yourself,” Fraser, 41, said, “your standard of living should end?”

The able world has been that cruel.

But the too-common solution of “medicating yourself into submission” was not an option for a group of polio victims at Pearson Hospital. They “busted out” in 1972 and formed the VRS, to find a place for people to live with dignity whom government or charity wouldn’t or couldn’t help.

“Our clients are very high needs,” said Fraser of the men and women dotted in purpose-built and adapted structures throughout the city. “We have a lot of non-verbal, multi-disability, mental and physical-activity- reduced clients. They are best in our homes.”

Ideally, like the Blair Court building near Arbutus and Broadway where VRS clients have 12 of the 39 units, there is a resident careworker. But, while Fraser acknowledges “the 24-hour-care model gives a lot more independence, those models are really hard (financially) to put together.”

Margo Browne, 73, loves her marriage to Blair Court.

“There’s no comparison” to her former residence, a group home, said the Quebec native who’s confined to a wheelchair by muscular dystrophy.

Browne returns the favour for the VRS and Blair residents by planting and tending to the beautiful courtyard gardens.

“I enjoy the garden,” added Browne. “I get up and get out.”

Gloria Kocay is the VRS director of client services. She hears the pain caused by a lack of proper housing for the severely disabled.

“A lot of people are quite desperate,” says the veteran RN. “We get five to six calls a day. For many, other than a hospital, there is not a suitable home for them. It’s very frustrating. I wish I had a place for them.”

But so confident is Fraser and determined to fight for the best feasible solution for VRS clients that he can say proudly of one particularly poignant case: “I guarantee you he would not have lasted (lived) as long without our care.”

For non-profit agencies, money and allies are not as available as the VRS would like. The current soft land market doesn’t help.

Fraser said the only time “the developers need us” as a social housing component to trade to the public for zoning approval “is in

the toughest cases.”

But through all the challenges, Kocay said that one thought drives the VRS in its mission — care.

“We are really focused on the issue,” she said. “We don’t lose sight of that.” –Vancouver Province Sept 7 2000

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2000: A home that gets it right: Walks, cereal and washing the car replace drugs and cruel restraints

(Copyright The Province 2000)

When it comes to tying unruly old people into wheelchairs, Jane Devji is something of an expert.

During her years as a nurse at a North Shore care-centre, she taught aides how effective chest-belts and geri-chairs could be in dealing with residents who were apt to strike out or wander off.

“I used them believing totally that we put them on people to make them safe,” she says.

All of that changed the day Devji attended a workshop and was asked to sit for just a few hours with two fingers tied together.

At the Deltaview Habilitation Centre in Ladner, a nursing home that Devji owns and operates, there are no physical restraining devices on the premises.

“It’s a disgrace,” is how she describes the practice, still used in many B.C. nursing homes as a means of coping with residents who display the sometimes-aggressive effects of dementia.

For 10 years, Deltaview has pioneered a whole new approach to dealing with the old-age disorder, whose victims are expected to triple in B.C. over the next 30 years.

“Instead of labelling someone as aggressive, we label that person as someone who’s lost and who’s scared of things,” says Devji.

Residents who lash out are taken for walks through the garden or asked to wash “the car” — parked outside the home for that very purpose.

Devji says the gentle-care approach has proved more effective than any restraints or medications. “Our drug usage is 1.9 (doses per day) compared to the industry average of 4.5,” says Devji. “The people here are living longer. They’re not medicated so they’re not falling down and breaking their hips as much.”

She says that means residents who wake up in the night are more likely to be given a bowl of cereal than a handful of pills. The centre is also less regimented than most nursing homes.

“Our residents can get up whenever they want to get up,” says Devji. “They can have breakfast whenever they want. If they don’t want to eat breakfast then that’s okay. If they don’t want to sleep, it’s okay.”

Deltaview’s design also takes into account the special needs of its residents, all of whom have dementia. Doors are disguised — in one case, as a bookshelf — to discourage “escapes.” There’s a walking loop around the building’s interior — in contrast to many homes which report constant wheelchair-congestion at the nursing station.

Christine Gordon, a consultant with the Vancouver-based Coalition for People with Disabilities, says it’s too bad that the work of Jane Devji has not been recognised by health authorities.

“I know she gets tremendous feedback from family members but I don’t see any policy that’s helping her,” says Gordon. “I don’t see anything that’s letting those facilities doing a good job get some bonuses.”

Gordon notes that Deltaview’s staffing ratio — one employee for every eight residents — is the provincial average and says that too many homes use staffing-levels as an excuse for doing a poor job.

Until those facilities adopt Jane Devji’s philosophy, she says, families looking for a care facility should ask lots of questions — especially on restraint policies.

“I would say physical restraint in the sense of confining people to their chairs is the most common,” Gordon says.

“Chemical restraint in the sense of psychotropic medications are probably pretty prevalent but it’s hard to get a line on those because a lot of those medications are designated as active treatments.”–Peter Clough Vancouver Province Oct 31 2000

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2000: “Our traditional approach had led us to see things as we expected them to be, instead of how they really were. Rules and regulations had been imposed on residents and staff without including them in the decision-making, and past successes had led us to believe that this approach was the best and only way. We knew this was wrong and had to admit it…The fears of the general public and the negative view of institutonal care, in many cases, were true more often than not.” –from “Burquitalam Lions Care Centre: Changing a Culture” by Renee Danylczuk, The Road to Eden North: How Five Canadian Long-Term Facilities Became Eden Alternatives (2004), p25-26 [“Renee Danylczk is the Administrator of the Burquitlam Lions Care Centre of Coquitlam, British Columbia.” pvi]

2001: Tragic stories give victims a voice: Despite the best efforts of advocates, too many young people with brain injuries still face life in a geriatric ward

(Copyright Vancouver Sun 2001)

Usually when a reader asks me why I’m writing on a given topic, I put it down to plain curiosity. But lately, when I get that question (and I’ve been getting it a lot since taking up the subject of brain injury) there is a whole different tone. As in, how have you been touched by this topic? Is someone in your family affected? Have you run up against the system?

I tell them no. I fell into it the way a journalist falls into most topics — one story leading to another, to another. When they beg me, and I mean beg, not to stop writing about it, I say okay — tell me your story.

It seems they mostly tell these stories to each other, weep for each other, support each other in ways that can only be described as heroic (but that go unnoticed out here in the world of able minds and bodies). When someone from “out here” listens in and writes about it, they’re taken aback.

I mention this to Carol Paetkau, who advocates for families of brain-injury survivors in the Fraser Valley and who helped me piece together my last two stories on young men facing the prospect of life in a geriatric ward. “Mostly there’s a deafening silence about brain injury,” she said. “It’s because the clients aren’t able to advocate for themselves, and the families are exhausted just caring for them. Who has the strength to fight the system?”

It is Paetkau’s job to fight for her families, but because she and her colleagues in brain injury support organizations across the province get paid for it, they are too easily dismissed as professional squeaky wheels.

In fact, I’ve heard from a number of people in the field that the B.C. health ministry has decided to devolve its Provincial Brain Injury Program to the regions precisely because of the squeaky wheel factor. Some of the community advocacy groups (the effective ones) are making too much noise about the program’s meagre resources — its inability to fund appropriate beds and rehab services for even a tiny percentage of those in need — and Victoria is tired of hearing those squeaks echo loudly across the province. If brain injury becomes an entirely regional responsibility, the theory goes, the noise will be diffused. And the program, in the words of Charles Grierson, “will just dry on the end of the vine.”

Grierson, a retired hospital administrator who was executive director of Vancouver’s G. F. Strong Rehabilitation Centre from 1980 to 1990, speaks of the tragic sameness of the situation, year in, year out, for people who so clearly need public support. “In 20 years, nothing has changed,” he told me. “Young people are still being placed in extended care facilities that are inappropriate for them. In most cases, there simply are no options.”

This is not for lack of trying on the part of health professionals. A decade ago, for example, the staff and administration at Mission Hospital’s extended care unit lobbied for funds to create a separate ward for young brain-injured residents. If they had succeeded, I would not have had to tell you the story of 37-year-old Jamie Fairweather and his succession of dying roommates.

Exactly 20 years ago, to mark the United Nations Year of Disabled Persons, G. F. Strong sent an educational team of physicians, therapists and nurses to northern B.C. to hold brain-injury and stroke forums for health workers and families. Says Grierson: “This was a tremendous shot in the arm for smaller communities who would otherwise have limited opportunities to learn how to look after these people, because they don’t see very many of them.”

Unfortunately the exercise was never repeated. G. F. Strong’s provincial outreach — one of Grierson’s prize programs — has since been compromised by inadequate funding and by the NDP’s regionalization policy. Where the renowned rehab centre used to be administered as a provincial tertiary treatment facility, with up to half its clientele from outside the Lower Mainland, it is now part of Vancouver Hospital, funded by the Vancouver-Richmond Health Region, with a beleaguered outreach staff that is more renowned, in the hinterland, for being out of reach.

Nor is this simply a funding problem. “The thing is, no one has ever tried to put numbers to it,” says Grierson. “If you provide rehabilitation, you will get many of these people, especially where spinal injury is concerned, back into jobs instead of sitting in institutions being cared for. I have had a high-level quadriplegic say to me, I want to pay taxes. I want to be a contributing member of society.”

John Simpson, who left his career as an ICBC rehab manager to become B.C.’s most prominent private consultant in the field, counts society’s losses differently: “I do a lot of work in the criminal system, and 80 per cent of the men I’ve met were brain injured as kids and not treated. You pay now or you pay later,” says Simpson.

The losses pile up, ironically, as our acute-care system improves. “We have great ambulance crews, great emergency care,” says Simpson. “But if they’re not going to provide survivors with any quality of life then don’t pick them up off the road in the first place.”

I have to conclude it comes down to a lack of political will, exacerbated by the lack of a powerful family name — say a Reid, Fox or Moore — to lend brain injury the priority it deserves.

The names on my own list may not be powerful to Ujjal Dosanjh and his health minister, whoever that may be this week. But they’re heroes to me: The Fairweathers, Campbells, Gaudets and Libins who shared their stories to shed light on brain injury.

Marg Smith — who waited years to get a bed in White Rock’s “nicest” extended care facility for her 46-year-old daughter, victim of a degenerative neurological condition. Nice for geriatric patients, that is, but hell for a lucid 46-year-old for whom the only diversions are TV and a weekly sing-along in the lounge (It’s a Long Way to Tipperary, one more time). Her stereo sits silently in her room because no one has time to come by and turn it on.

Marlene Holmans — who pleads with the nurses in her 37-year-old son’s extended care ward in Langley to be nicer to him, to change his diapers more often, to put up with his temper tantrums. “They’re like babies,” she says of severely brain-injured people. “They laugh a lot, which is lovely. But they get angry easily. If they can’t have their way they scream and carry on like a two-year-old. Most of the problem is they’re just plain bored. There’s nothing for them to do.”

Debbie Brethour — whose 23-year-old son will be transferred from a brain-injury group home to a decrepit ward in the old Pearson Hospital “over my dead body.” Mark Brethour’s ICBC rehab manager, social worker and doctor have all recommended Pearson, if only because it’s the sole publicly funded extended care facility in the Lower Mainland with a concentration of younger residents. Debbie, who was widowed four years ago and has no other children, has toured it and ruled out the overcrowded, foul-smelling facility. Not just for Mark but for all humans. “I love Mark so much and worry about what if something happens to me — that he could end up there.” –Paula Brook Vancouver Sun March 23 2001  http://proquest.umi.com/pqdwebdid=224819241&sid=4&Fmt=3&clientId=58962&RQT=309&VName=PQD

2001: Moving to limbo

(Copyright The Province 2001)

When Annette Gerein decided to move to Victoria, she didn’t think to ask permission from health board bureaucrats.

Now the disabled Vancouver resident is frantic because Victoria’s health region refuses to follow the B.C. government’s own rules.

“I’m really anxious and nervous,” said Gerein, 51, who has already packed her apartment of 20 years.

“I want to move — everybody has a choice of where to live and I made my choice. I wasn’t expecting any problems.”

She has lived independently with the help of home-support services her entire life. Since 1994, the Vancouver health region has given her money to cover eight hours a day of home support. With careful spending, she uses the money to hire her own aides for the 24-hour care she needs.

Gerein, who has cerebral palsy, assumed Victoria’s health region would give the same eight hours a day.

She was wrong. Without any assessment of Gerein’s disability or her care needs, the region told her it will pay for a maximum of four hours a day.

“The timing for your move may not be ideal at the moment, if you require more hours of funding than we can authorize,” a Victoria home-support program manager wrote June 21.

Meanwhile, Gerein’s apartment has already been rented and the movers arrive next Thursday.

“My home is now Victoria — I have no choice, but I don’t know what’s going to happen,” Gerein said. “I need 24-hour care to live independently. It’s much cheaper than an institution. I don’t know what’s wrong with them.”

Christine Gordon, a co-ordinator for the B.C. Coalition for People with Disabilities, has been fighting regional health boards for years to get home-support services for her clients.

“I am in a state of absolute frustration over this shell game being played with people’s lives. It is a terribly dangerous thing,” Gordon said.

“The ministry policy is clear, but the regions just do what they want.”

Health Ministry policy states that health regions must provide home support based on assessed need and that people with the highest care requirements should be the priority.

It also states that home-support services cannot be denied because of the cost or because a person is transferring from another health region.

Rick Roger, chief executive officer of the Capital Health Region, told The Province yesterday that despite the letter from his office, Gerein will be assessed for her needs and not be restricted to four hours of care a day.–Wendy McClellan Vancouver Province July 6 2001 http://proquest.umi.com/pqdweb?did=225539991&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

2001: “Aside from affordability, our approach has often been characterized as disenfranchising and disempowering those who best know what services and supports are required to persons with developmental disabilities to independence—their families, their care providers and their communities. We have imposed ourselves in ways that have too often proven to be unhealthy and unsustainable.” –Discussion Paper on Community Living Services, BC Ministry of Children and Family Development, p5, October2001 http://www.pracl.ca/PublicDocuments/MCFD.pdf

2001: Paraplegic’s death mobilizes his family to lobby for change

All material copyright Bell Globemedia Publishing Inc. or its licensors. All rights reserved.

B.C. officials had cancelled home-support shortly before the 36-year-old died alone.

Dwayne Gough died alone in his Victoria apartment in September and it took three days for the paraplegic’s body to be discovered.

In the summer before his death, health authorities had taken away the services of a home-support worker who used to visit the 36-year-old man on weekends to help monitor his health.

Now, Mr. Gough’s family and disability advocates in British Columbia are calling for a legislative investigation into the home-support system.

The number of people receiving home support has dropped over the past decade, while statistics show there is a greater need for these services across the country.

“Dwayne was one of thousands of British Columbians who have had their home support reduced or eliminated in recent years and we greatly fear that other families could lose a loved one due to inadequate care,” Dwayne’s sister, Wendy Sutherland, wrote Monday in a two-page letter to Corky Evans, B.C.’s Health Minister.

Three years ago, Mr. Gough started to get weekly visits from a home-support worker who monitored his health and helped clean his apartment. Then the visits were reduced to every second week. This summer, they were eliminated completely because the region

identified Mr. Gough as a low priority for home support.

Several days before Mr. Gough died, he called his sister to tell her he had the flu. He was taking an antacid, he said, but it was giving him diarrhea. He died that weekend after dehydration caused a shutdown of his major organs.

Christine Gordon, co-ordinator of the non-profit B.C. Coalition of People with Disabilities, said the Health Ministry and its regions have drastically cut home-support services and funding across the province.

“You would expect to see health-support clients increase, but the numbers are dropping,” she said. “We are worried about the people losing this support.”

However, two weeks ago, B.C.’s Ministry of Health announced that $32.3-million over two years was being given to the regions to enhance home-care services.

Paul Lackhoff, a ministry spokesman, said funding specifically for home-support services has increased to $216-million in 1998-99 from $128-million in 1992-93.

Gordon Argyle, a quadriplegic and acting chairman of the volunteer-based Home Support Action Group, said most of the money is going toward paying administrative costs, which are constantly increasing. He also said there is a difference between home care, which pays for the expensive services of registered nurses and trained professionals, and home support, which doesn’t require highly trained individuals. Only a small portion of the funds allocated to the regions go into home support, he said.

In November, the B.C. office of the Canadian Centre for Policy Alternatives, a research institute, released a study. It shows that in the 1990s, the number of people receiving home support in B.C. declined by 19 per cent at a time when the number of elderly people in the province who were 70 years or older increased by 25 per cent.

These results are consistent across the country, said Donna Vogel, co-author of the study. .

“There’s a huge gap between the needs out there and the services,” Ms. Vogel said

–Caroline Alphonso Globe & Mail Dec 21 2001 http://proquest.umi.com/pqdweb?did=1051660321&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

2003: “The Province [of BC] and [Abbotsford School Board] attribute the failure to agree on a placement and program to the parents’ [of an autistic child] and unreasonable requirements for Darren’s school program. The Province and the School Board say that the parents sought to impose their personal choices on the school, and that these choices were not necessary for Darren to reasonably access an education. Further the Province and the School Board say that the fact that Darren has not attended school for the last three years is solely the fault of the parents who refused a reasonable placement proposal made by the District.” –Hewko v BC p5]

“I [Madame Justice Koenigsberg] find between late January and March 30, there was an evolving resistance of the part the school and the [Abbotsford] School Board to listen to the Hewkos and to accommodate Darren Hewko’s home-program despite the repeated failure of the School Board’s resources to enable Darren’s access to education.” [Hewko v BC p48]

Madame Justice Koenigsberg concluded Abbotsford School District #34 took an approach that abdicated “its responsibility to provide Darren Hewko reasonable access to education.” [p111] For details see Hewko v BC http://www.autismsocietycanada.ca/pdf_word/Judge%20Koenigsberg_re_HewkovBC_11_03_06.pdf

2003: Frail, elderly face unsettling changes

(Copyright Vancouver Sun 2003)

Drastic reforms to health care are under way in B.C. ,producing a transition period that can be painful for our most vulnerable citizens.

Far from the corridors of power, a quiet struggle is occurring in the homes of British Columbia’s most vulnerable citizens. As the provincial government reorganizes the way in which health care is delivered, thousands of elderly and disabled citizens are having to cope with dramatic reforms to home care.

The government says changes in the way care is provided to the frail and disabled are necessary to ensure the long-term viability of home care given a rapidly aging population.

But for those who sit alone in need of a visit from a home care worker, the changes are unsettling, disruptive and confusing.

Government officials call it a period of transition. Those who depend on care call it chaos.

Starting today, The Vancouver Sun explains the problem, explores the reasons behind the reforms, describes the road ahead and profiles the often invisible pain facing British Columbians and their families.

Like the woman in Victoria who won’t drink liquid in the early morning because home care workers won’t be able to take her to the bathroom until later in the day.

Or the Vancouver senior who struggles to care for his infirm wife, placing his own health in jeopardy, rather than put her in an old age home.

While governments want British Columbians to stay in their homes as long as possible, restructuring and underfunding of home support have created new stresses that make staying home more difficult.

The Sun has found dramatic cuts to home support — things such as light housekeeping and grocery shopping for frail seniors and the disabled — threaten the health of vulnerable British Columbians while increasingly shifting the burden of care to family members,

whose health may also suffer as they try to meet impossible demands.

Further, an erosion in home care and unclear direction from the provincial government has created a patchwork of care around B.C.

For example, a Kelowna senior citizen dying of cancer can’t get a break from caring for her daughter with multiple sclerosis, while a Victoria woman with similar health-care issues enjoys 22-hour home care.

For the B.C. government, care for seniors and the disabled — ranging from modest support in the home to intensive 24-hour nursing home care — has a $1.6 -billion annual price tag.

With an aging population — the number of senior citizens is expected to grow by 120,000 in the next seven years — the government is attempting to restructure the way care is delivered and plan for the coming decade.

Colin Hansen, B.C.’s minister of health services, says taxpayers simply can’t afford massive increases in the health budget, which has grown from $3 billion in 1995 to $10.4 billion today.

“We cannot maintain that increase,” he says. “Simply adding more money isn’t going to solve the problems.”

Because of improved health care, the fastest-growing age group is over the age of 90. Their numbers will increase by more than 40 per cent in the next three years.

“The good news is people are living longer. The bad news is the average health cost for someone over 90 is $21,000 a year,” Hansen says. “As our society ages we are facing huge challenges.”

Hansen said the government’s redesign of health care, which began in April 2002, is very much like trying to turn a supertanker around. “Change, we recognize, is very unsettling. Health care is the most resistant to change,” he says.

TRYING TO BRIDGE THE GAP

In government circles, the delivery of care to seniors and the disabled is called the “continuum of care.” Until recently, that care was either delivered at home or in long-term-care facilities such as nursing homes.

But now, the government is creating a new middle step to bridge the gap between home care and costly nursing care. Called either supportive housing or assisted living, the new model allows low- and moderate-income seniors to maintain their independence in a home- like setting, complete with lockable door, meals, housekeeping services and access to health care professionals.

The new option, still in its infancy in B.C., has resulted in significant savings in Alberta and the U.S. So far, 1,000 assisted living units have been established (in the Lower Mainland, Victoria, Vernon, Kelowna, Powell River, Prince Rupert and Burnaby), but exactly how many are needed is not yet known.

Assisted living is a good concept experts say. It brings people together, reduces the cost of home care by eliminating travel time and offers people the supports they need while protecting their independence. But it can’t replace other forms of care.

“There is a need for assisted living in Canada,” says University of Victoria sociologist Neena Chappell, who specializes in issues of aging. “The problem from what I have seen for past three decades is that when a good idea comes in, it is not added to meet a new need, but becomes used to replace something else that is needed.”

The government restructuring, which is based on long-term needs and will eventually mean the closure of 3,000 nursing home beds, has resulted in significant and very public failures.

The most high-profile such case occurred last summer, when the government split up a fragile couple in their mid-80s who had been married for 60 years. As a result of nursing home restructuring, Grace and Alfred Potvin were forced to live in separate wings of Chilliwack’s Parkholm Lodge — one of several nursing homes now slated for closure.

“After being married 60 years, I felt it was just about criminal,” Alfred Potvin said at the time. “How would the premier of the province like it if we put his wife in another place. That’s what he did to us.”

While the Potvins were reunited after 53 days apart and the government agreed to no longer separate couples, the damage from the high-profile separation still lingers.

LIKE RENOVATING A KITCHEN

Katherine Whittred, B.C.’s minister of state for intermediate, long term and home care, admits the restructuring has caused disruption. She also readily admits the health authorities have not finalized decisions on which long-term care homes will be closed as part of the government’s reorganization of the community care sector.

But she promises there will be no net loss of beds — the 3,000 beds that are to be closed will be replaced under assisted living or long-term care programs, while an additional 5,000 more beds will be added to the equation by 2006.

“The health authorities are working on their plans now,” Whittred says. “It’s a little bit like renovating your kitchen. You don’t do that without some dust. We can’t renew the long-term-care bed system and provide more opportunities without a little bit of dust.”

Some of those in the health care field say comments like those show insensitivity and ignorance of the real issues facing disadvantaged British Columbians and their families.

Dr. Tom Koch, a medical researcher and professor of gerontology at Simon Fraser University, is offended by Whittred’s analogy to dust.

“The dust is real and affects people,” he says. “There have been real problems in this transition period.”

Like many other researchers and advocates, Koch has been unable to study the problem properly. He has been unable to obtain even basic information from the provincial government since it began the restructuring 10 months ago.

“It struck me that I should be able to get data. I didn’t get the data.”

Like others, he has been given a litany of excuses: The data haven’t been collected, they have been collected but not analyzed, the data have been changing week by week, the data are too sensitive and, finally, the data have been was analysed, but you wouldn’t be able to understand the findings.

Koch, who recently attempted to determine how many nursing home beds the government has closed, was forced to make numerous calls to all five health authorities and speak with administrators. In the end, he determined 1,890 long-term-care beds have been eliminated to date.

Up until April, when the government began its restructuring program, there were approximately 7,000 seniors on the waiting list for one of B.C.’s 24,707 publicly funded long-term-care beds.

But since the government changed its assessment process, Whittred says, the waiting list has been virtually eliminated.

“What used to happen was, someone might think, ‘I might need care’ and put their name on the wait list. It had nothing to do with the state of their health. The result of that process was the wait list became very long and available beds were granted chronologically,” she says.

“There was a huge problem of getting anyone in care — people with dementia or who had a stroke might be well down the list.”

But Val McDonald of the Seniors Housing Information Program says the government’s restructuring is causing havoc for families. She adds it’s becoming tougher and tougher for seniors to access a long- term-care bed and these are people in need.

“We desperately need to get more housing,” she says, adding her agency gets about 200 calls a month from seniors looking for a government-subsidized space.

“They [government] say they want people to live independently, but they won’t provide the money to support that. It’s a catch-22 for seniors right now.”

Whittred said seniors and people with disabilities who are the “neediest” are getting the help.

But, she agreed, those getting the long-term care beds are now primarily over the age of 80.

“The 65- and 75-year-olds are mere kids. Most people don’t need to access these services till they are well over 80.”

A QUESTION ABOUT PLANNING

Dr. Gloria Gutman, director of SFU’s gerontology program, says she’s concerned the government is fundamentally changing the system before drafting its long-term plans.

“Will we have enough beds and services for people at the right time?

“How come these cuts were made before the long-term plans are made?” she says. “The elimination of housecleaning service — that to me was dealing with prevention and health promotion.”

Gutman, who regularly advises the government on seniors’ issues, also says no analysis has been done to determine the effects of eliminating basic services such as house cleaning for frail seniors and the disabled.

In a recent academic study, one of Gutman’s students found that one third of the clients who lost housekeeping services were unable to cope at home and were forced to enter the long-term care system at significantly higher cost to taxpayers.

“In their case, housekeeping obviously wasn’t a frill,” Gutman says. “What are we doing about ensuring we identify these people?”

Whittred says reductions in home support began under the previous New Democratic Party government.

In 1997, the NDP government changed policy and said home care would only be delivered for health reasons. No housekeeping, laundry, meal preparation or grocery shopping. But that policy was unevenly applied across B.C.

Now, the Liberals are enforcing the policy, meaning frail seniors or the disabled will no longer receive services not directly linked to health. This is happening despite academic research that proves there are health benefits for the disadvantaged — and cost savings for government — when services such as grocery shopping are provided.

“There has been a reduction of services,” Whittred admits. “But government has to make choices how we spend our precious dollars … We believe health dollars should be spent on services that are rightly defined as health services.”

DEMAND KEEPS RISING

While service cuts have been made, the provincial government says overall dollars directed to home care have not been reduced but have simply been re-directed to people with more intensive needs.

But attempting to track health care dollars to determine trends is almost impossible.

When the B.C. Liberals took over, there were 52 health regions that were responsible for their own health spending. Those were contracted into five regions last year.

Officials at the five health authorities can say how much they are spending this year, but can’t determine what was spent in previous years because of the complications arising from the health- care reorganization.

However, it is clear that health budgets in the five health regions are frozen while both wages and demand increases.

Essentially, the government is insisting the $1.6 billion spent on the continuum of care re-main constant over three years.

By scrapping the lowest level of home support and realizing savings at the upper end — by reducing dependency on nursing homes and focusing on assisted living spaces — the government hopes the $1.6 billion can serve more clients.

Indeed, demand keeps rising. By 2006 there will be 8,400 additional clients requiring some form of residential care — assisted living or nursing care. Whittred says.

Professor Neena Chappell doesn’t buy the government’s accounting and justifications.

She says the B.C. government, through the health authorities, is making regressive cuts to the disadvantaged because they are an easy target.

“The disadvantaged, who aren’t organized and who don’t have a lot of power. Governments can cut those without receiving a lot of flak,” she says.

The care provided to seniors — whether minor home support, more substantial home care or long term residential care in nursing homes — is a particular target for governments because those services are not covered by Canada’s medicare system, she says.

“Anything in the health care system, outside of physicians and acute care hospitals, is outside of medicare. It’s easier for the government to cut those. When they start trying to cut hospitals and doctors, that’s when it starts to become visible, because medicare is a national program. Long-term-care institutions and home care has never been a part of medicare, so it’s easier for them to cut them.”

For Barbara Krumm, a debilitated Victoria woman who suffers from multiple sclerosis, the spectre of further cuts to home care is her biggest fear.

Her life, whether dressing, toileting or doing something as seemingly mundane as drinking coffee, revolves around a schedule set by others. But Krumm can be considered one of the lucky ones — she now receives the maximum 120 hours a month of home care.

She used to get a little more than the maximum — an additional hour of home support, but that was recently cut.

It may not seem like much of a cut, but for Krumm it impacts on when she is able to have her toileting needs met.

“That one hour makes a lot of difference. I dare not drink anything until they [home support service workers] come. I have to wait until 9:30 a.m. for coffee. I’d like to have it at 6 a.m., when I wake up.”

Krumm said she lives in constant fear her home support services will continue to be eroded and has been pressured by officials to use a catheter — a urine collection device that would likely result in significantly reduced home care hours.

“If I had a catheter they would only have to send a lady once or twice a day to put me on the toilet,” she said. “But I don’t want a catheter. With a catheter you get more infections. I figure I have home support now, but it’s a fight to keep what I have.”

Gordon Argyle, one of the founders of the Victoria-based Home Support Action Group, says it’s unfair for government to cap the number of home-care hours at 120 per month.

“It should be based on need,” says Argyle, a quadriplegic who relies on home care.

As one of the more active members of the Home Support Action Group, Argyle hears many of the horror stories, including one about how some people are being forced to leave their homes in order to get a shower.

“Instead of sending someone to their home, for a fee of $5, you are driven to an institution for a shower once a week. It’s like a public shower. It’s not dignified,” he said. “A lot of people just refuse.”

PROVIDING FOR SENIORS

Advocates say the government could avoid such indignities, and the complaints that follow them, if it enshrined the rights of seniors and the disabled in legislation.

“Our number one recommendation is government needs to create in legislation an act that provides for seniors. Something that plots out what government will provide to ensure safe and stable housing with appropriate services,” says MacDonald, of the Seniors Housing Information Program says.

Until a direct commitment is made in law, seniors will watch in fear as system changes are made, while their families will be saddled with more care, MacDonald says.

“The fear is that with a reduction of residential care beds and a current lack of appropriate home-care services, seniors are left caring for themselves with limited resources and families will be expected to pick up the slack. It puts a tremendous stress on families. Government has this impression every grandma has a loving family, but it just isn’t so.

- – -

GLOSSARY

Community and Continuing Care is health care delivered outside hospitals, clinics and doctor’s offices. Community Care can be divided into three broad categories:

- Home Care: refers to services for the elderly and people with disabilities to assist them with the every-day activities of daily living. Services range from Home Support (see note below) to occupational and physical therapies to full nursing and medical care. Home care is available to people with chronic conditions on a long-term basis and in the short term to people recovering from illness, injury or surgery. It also provides palliative, respite and other related care.

- Home Support: Refers to non-nursing services provided in the home and can include personal care, such as bathing, dressing, and feeding, as well as housekeeping and meal preparation, shopping and transportation. Also includes respite care for the caregivers. It’s purpose it to prevent accidents or worsen disease and keep clients out of more expensive facility care.

- Supportive housing and assisted living: a living arrangement in which the elderly and disabled achieve independence and privacy within a safe and serviced community setting. In supportive housing, people have their own living space, 24-hour monitoring and emergency response services, and the option of meals and house cleaning. In assisted living arrangements, on-site health care is also provided.

- Long term care facilities: for people who can no longer live safely outside the home, usually due to old age, infirmity and/or serious disability. A long-term care facility provides medical and nursing care, meals and 24-hour surveillance.

- – -

B.C. HOME SUPPORT

- B.C. spends $1.6 billion for residential and community care and leaves it to the five health authorities in the province to determine how that money will be allotted.

- Approximately 70 per cent of home and community care funding is spent on seniors living in long-term care facilities.

- The number of clients expected to need home and community care services will increase by about 1,600 people every year.

- The percentage of British Columbians over the age of 65 will increase from 13 to 21 per cent over the next 25 years.

- Cost of providing acute care in hospital is $700 to $1,100 per day. The cost of providing long-term residential care is $125 per day for someone needing 24-hour support. The daily cost of providing home care is $50 to $75 for someone living on their own or in one of the government’s new assisted-living units.–Vancouver Sun March 7 2003 http://proquest.umi.com/pqdweb?did=305854931&sid=10&Fmt=3&clientId=58962&RQT=309&VName=PQD

2003:Rob’s Story

http://civilrightsnow.ca/2010/12/robs-story/

2003: ‘They just said my care was too hard’

(Copyright Vancouver Sun 2003)

MS sufferer set up for home care only to have it cut off last fall

KELOWNA – Sherry Wonitoway lies motionless in her darkened bedroom, calling for her mother who is busily washing dishes in the bright, airy kitchen.

Sherry, who has multiple sclerosis, strains to raise her voice to be heard, but she is barely audible in this room, never mind over the

clanging of pots down the hallway.

“Mom … Mom … Mom.” She pauses to rest for a moment, then tries again. “Mom … Mom … Mom.”

A few minutes later, Mary Wonitoway appears at the doorway.

“Were you calling me?”

At 78 years of age, Mary is a petite woman who is full of nervous energy. Her hands are in constant motion, fidgeting with something in her cardigan pockets. Mary is one of the unknown number of family members in B.C. caring for a relative who is either ill and/or disabled.

Although Sherry’s 23-year-old daughter Chrystal tries to come by and help when she can, she is also busy raising her own own child

in Penticton — more than an hour’s drive away.

Sherry’s two brothers have families of their own and are also not nearby to help. One brother is in Fredericton and the other is near Winnipeg.

“I’m stuck here. My mom and I are alone,” she says.

But the problem is that Mary herself is not well. She has lymphatic cancer and chemotherapy is no longer an option.

DYING WHILE HELPING OUT

Mary is matter-of-fact about the terminal disease she is facing. She states simply that her doctor has told her there is no point in doing any chemotherapy because the cancer is too widespread.

“The doctor said if I want to do something, I have to do it now,” she says. “I’d like to get away. It’s been two years since I’ve had some time for myself. But I can’t leave Sherry. She has to have somebody around.”

So although she is dying of cancer, Mary finds her final days are being spent caring for her 52-year-old daughter seven days a week, 24 hours a day and worrying about the future.

“It’s sad Sherry doesn’t have any help. They [health authorities] say if I need help they’ll send someone to come and talk to me,” says Mary. “I don’t have time to sit down and chat with a counsellor. I don’t have time to get depressed.

“What I need is someone to help me cook and clean.”

Mary adds that she can’t even go shopping because she worries Sherry could need help with something as simple as straightening her arm if it was to spasm. She used to be able to leave for brief times to visit the nearby mall by calling a neighbour who was willing to come over if needed. But since the neighbour got a job during the day, that bit of respite has ended.

At this moment, Sherry is clearly in pain after a muscle spasm.

“Can you fix my left hand. It’s hurting my thumb,” Sherry tells her mom. A muscle spasm has caused Sherry’s left hand to jerk off

the soft towel across her stomach and land on her right thumb. Mary reaches out to reposition her daughter’s hand. To do so requires bending Sherry’s thin arm, which is covered with small bruises.

Sherry says she doesn’t know why her skin is so sensitive but warns me not to touch her. Even her mother’s gentle touch as she replaces her hand back to a comfortable position causes her to grimace in pain.

Sherry’s multiple sclerosis — a chronic and progressive disease of the nervous system — has progressed to paralysis. It usually appears between the ages of 20 and 40, and affects twice as many women as men.

Ten years ago, Sherry lost the ability to walk. But even worse, she says, was the loss of the use of her arms and hands seven years ago. Not being able to move at all has forced her to be totally reliant on others to meet her basic needs.

“Mom washes my face, straightens my arms and neck, puts lotion on me. She cooks my meals and feeds me. I don’t want her to do too much. I try not to ask. I’d prefer just to sleep all day so I didn’t have to call her.

“Mom’s angry a lot of the time. She’s so tired and she’s angry. They [health officials] are just pushing people to the maximum.”

Sherry’s only recreational activity is “staring at the idiot box,” as she calls the television.

“If I just had one arm, even if it was mechanical, I’d be the first one to go for it. It would be a brand new world just to be able to scratch your nose,” she says.

Sherry’s only connection to the outside world is a sip-and-puff device that allows her to turn on the television, adjust the channels and volume, and use the telephone.

A microphone beside the sip-and-puff device is taped to a bendable, gooseneck lamp that hangs directly above her mouth. Because Sherry is able to move her head slightly she can catch the plastic sip-and-puff device and pull it towards her mouth. By doing so, she is able to connect to the phone. If Sherry puffs once into the device she is connected to the operator, who will dial the numbers Sherry has memorized. Numbers dialed less often are written on yellow sticky pad sheets that are also taped to the lamp, within Sherry’s view.

These days Sherry’s world is limited to her bedroom. It’s a small room simply decorated with a wooden cross over a homemade shelf, an angel calendar, an assortment of earrings she no longer wears, a framed pencil drawing of her daughter at the age of eight and artwork from her three-year-old grandson. A rolltop desk is where her medication is kept.

“It’s not the way I’d decorate. But I don’t have any choice,” she says.

For a while Sherry was able to leave the confines of this room. A short ceiling track over her bed would allow a sling to be lowered to her and once she was rolled on it she could be electronically moved to the sip-and-puff wheelchair that Sherry herself could control.

But to get out of bed requires help. Mary is simply not physically able to help her daughter out of bed. As a result, Sherry is stuck in bed and gets out only when her own daughter comes by for a visit.

Having to rely 100 per cent on her family started in September. This was when the Interior Health Authority stopped providing funding for a home care worker to come to the house and provide the assistance Sherry needed to get up.

“They [the Interior Health Care region] just said my care was too hard.”

Sherry said officials want her to move into a long-term care facility, but she is adamant she won’t go there. She has already had experience in such facilities, having been placed there for brief periods in the past.

“Most of the people there are in their 80s. I’m 52 years old. I grew up in the ’60s. I have nothing in common [with the other residents],” she said. “How do you communicate with people who are 30 years older. They don’t speak the way I do. I went into the rec room to watch a program and one lady wanted to watch her show and she had a fit. I can’t do anything there,” she says.

“In a facility there’s so much yelling going on. There was a woman screaming there so much just one door down that I was shaking by the time I left. She didn’t stop the whole time.”

Sherry adds she can’t understand why the health authority is willing to pay for a more expensive long-term care bed when home support would be significantly cheaper.

FOLLOWING THE CARE PLAN

Health ministry figures indicate it costs an average of $125 a day for residential care, compared to $50 to $75 a day for care support in specialized housing.

Christine Gordon, an advocate with the B.C. Coalition for Persons with Disabilities, said the Interior Health Care region has been particularly “intransigent” in not providing funding to help Sherry and her mother.

“Sherry is determined not to go into an old age home and I don’t blame her,” says Gordon.

“She’s already gone some distance to get her environment up to the point where she can cope. It is so wrong [of the Interior Health Authority], especially when the support hours she is asking for [are] so small. She just wants to be able to get up and keep clean. They are very modest expectations. But it’s the way home support is going across the province. On any given day I could put my head in my hands and weep. I keep hearing stories like this one. To deny people the little bit of help they need to stay at home is just cruel.”

Interior Health spokeswoman Alison Paine said while the health authority wants to keep people independent in their homes as long as possible, Sherry’s health has deteriorated “to the point where her own safety and the safety of her workers is an issue.”

Paine says Sherry needs 24-hour nursing care, but Sherry insists her physical condition has not changed since she last received home care support.

Alice Mah Wren, director of the Okanagan’s community care program, says the decision not to fund the home support worker was not taken lightly. In the last week Sherry received government support, she says, a nurse had to go to her home to supervise the home care worker to ensure the care plan was followed.

Wren says the health authority simply couldn’t maintain that level of service. But Sherry insists a nurse wasn’t necessary.

Asked why Sherry would go from 120 hours of home care support — the maximum allowed under the health ministry guidelines — to nothing since September Paine said there is nothing the ministry can do if Sherry rejects the health authority’s decision.

“The care plan is laid out based on medically sound criteria and if the patient decides not to follow the care plan that’s their choice and the consequences follow,” she says.

Sherry, however, is continuing to fight to get her home care restored. Prior to the cutoff, a home support worker used to come at 8:30 a.m. every day to get her up and out of bed, give her a sponge bath and feed her breakfast. The worker would also put Sherry’s contact lenses in for her and give her the medications she needs to lessen her pain.

At lunch, a worker would return to feed her a meal, prepared by Mary, and at dinner the same help would arrive. At bedtime, around 9:30 p.m., a worker returned to help move Mary from her wheelchair to the bed — the same type, with safety rails, that is used in hospitals.

And although her life was certainly more restricted than most, Sherry considered it a good life because she was able to remain in her own home and at least get out of her bed and move around the ranch-style home that had been especially outfitted to meet her needs.

FITTING INTO A MODEL

Ironically, the government paid for the hospital bed, special shower, commode, carpeting that wouldn’t hinder the wheelchair, a ceiling track, paved the driveway, and built a wheelchair ramp leading into the home. There were also plans to install a door opening device that could also be controlled by the sip-and-puff wheelchair.

“They encouraged me to stay at home, so it’s not making sense to take away my home support,” she says.

With a disability pension of $750 a month Sherry says she can’t afford the cost of a home care worker.

But because she doesn’t want her mother to clean her after a bowel movement, Sherry has been forced to pay privately for that type of care.

“I won’t ask my mom for that type of help,” says Sherry, noting Mary already helps by emptying her urine bag.

“She’s already stressed. She is just beside herself. She’s not healthy. This is no way to spend your last days.”

Joanne Calkins, Sherry’s advocate and herself a former nurse, says Sherry doesn’t require full-time nursing support.

“There’s no justice in all this. It’s such a shame. Sherry’s home has been renovated. She wants to stay and I support her in that decision. When people are forced to move into facilities, their well- being goes down.

“What I’m not getting is [that] Sherry’s of sound mind. She’s aware of the risks [of staying at home] and she says she’ll take the risks, so why does anyone dispute that? The health care plan is somebody’s idea of how she should live her life. It’s like a regime has been set up for her and she has to fit into their model.”

But both Sherry and Mary say they won’t give up the fight to maintain Sherry’s independence.

“I’d rather have my daughter at home,” adds Mary. “But she needs help.”

“They [health officials] say they feel sorry for me. If they felt sorry for me, they wouldn’t be unloading all the work on me.”–Kim Pemberton Vancouver Sun March 8 2003 http://proquest.umi.com/pqdweb?did=306160571&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

2003: In charge of her own care needs

(Copyright Vancouver Sun 2003)

Quadriplegic Donna Pistell is among 450 British Columbians who get government funding to hire a caregiver to be with her for 22 hours of every day

Donna Pistell is one of the first people in B.C. to participate in a health program that in effect puts her in charge of her own care needs.

Pistell, who is a quadriplegic with a severe speech disability as a result of her cerebral palsy, has been living independently in Victoria for the past 25 years.

She is one of 450 British Columbians on the CSIL (Choices in Supports for Independent Living) program and receives government funding to hire a care-giver to be with her 22 hours a day.

Without home support, Pistell, 63, says she would be forced to live in an institution.

Although she knows she is one of the more fortunate British Columbians because she gets the help she needs, she lives in “constant fear” that funding will be cut back or eliminated entirely, forcing her into a long-term-care facility.

“There’s no question I receive far better care in my own home than I would in an institution. I recently heard workers in institutions have eight minutes to get each person up, washed and dressed in the morning, with no time for chatting. I might survive, but I wouldn’t want to,” she says.

“Independence means making my own decisions, from small things like when I want to get up in the morning, go to bed, what to eat and when I need to go to the washroom, to larger decisions, like who I want to take care of me [and] how I want my apartment arranged.”

According to the government, the average CSIL client gets 160 hours of help per month, costing an average of $50,000 per year.

To be in the program, the client must be over the age of 19, have a chronic condition and be able to self-direct their care needs. Because the client contracts with his or her local health authority for the funds, they are in effect the employer, responsible not only for hiring and training but for managing the books.

LIVING A FULFILLING LIFE

Roger Jones, who worked in the tax department for 10 years, notes even he’s had problems dealing with the book-keeping, because the documentation required is complex.

Jones, who became a quadriplegic after a 1985 motor vehicle accident, said government doesn’t provide any training for individuals on how to manage their funds, or teach business skills that would be necessary to hire workers.

“I have to look at finding, hiring and training and more importantly retaining people who will help me,” he says. “It’s very frustrating to deal with all this, but at the end of the day it’s a good life. I have been able to live a fulfilling life because of individual funding.”

Jones said he prefers to be on the CSIL program because he found he had no flexibility when government directed his home support care through an agency the ministry of health contracted with in Vancouver on his behalf.

“I couldn’t decide what time I went to bed and got up. If I was in an institution it would be virtually impossible for me to make decisions,” he says.

But, Jones added, finding the right home support worker is critical.

“You are lying in bed, paralysed and basically helpless, so when you look up and see that person staring down at you as your personal assistant, you better be able to trust that person,” he says.

Without CSIL funding, he says, he would either be receiving home support services through an agency, or would be placed in an institution.

“My personal feeling is government is looking to go back to an institutional model. They perceive it as being cheaper to warehouse people. It’s not, of course.”

Pistell says she’s also been lucky to be able to find great home support workers who have also become good friends over the years.

She has one worker who has been with her off and on for the past 20 years, while another worker has been with her for the past six years. Together, they share the job of caring for Pistell.

Home support worker Carol Gray says Pistell, as her employer, sets the hours and makes the rules.

Gray works a 22-hour day, from Sunday to Friday. When Gray takes her break, Pistell generally works on the computer in her two- bedroom townhouse.

“Usually if I take a break it’s in the afternoon. I won’t leave until I know she is secure,” says Gray.

Gray did her practicum work with an agency but prefers to work in a private situation like the one she enjoys with Pistell.

“I don’t want to work under union or agency guidelines. Sometimes they forget the client. It also eases her (Pistell’s) parents’ minds. They know we’re looking out for her.”

Pistell’s parents are both in their 80s and “would have a fit if they ever found out I was alone.”

“Some disabled people want to have that time alone. I don’t. It’s frightening.”

The CSIL program saves the government money in the long run and people are happier to be in their own homes, says Christine Gordon, with the B.C. Coalition of People with Disabilities.

She says people like Pistell are able to stretch the dollars because they don’t have to pay the agency overhead and the workers are doing it on a contractual basis, as opposed to working under a collective agreement.

Still, she says, a person on the CSIL program pays at least $15 an hour to keep good workers.

NOT A LEVEL PLAYING FIELD

The main criticism of the program is that it charges some users a fee, based on income, that creates a disincentive for people with disabilities to work, says John Newmann of the North Shore Disability Resource Centre.

Newmann, who is quadriplegic, has been on the program since 1994, but was told last August his “client contribution” would be $1,500 a month. That was later later changed to $709, then $500 and now $292 a month — a figure he still plans to appeal.

“I strongly believe user fees are not fair,” he says. “There should be a recognition people with disabilities are not on the same playing field as everyone else. I don’t want to knock seniors, but the argument I get from the health authority is they charge a user fee to seniors for home support. Most seniors have saved their money for retirement. They’ve at least had their whole life to save for it. It’s harder for a person with a disability to even find work.”

Newmann said user fees end up being a disincentive for a person with a disability to even look for work or advance. He knows one man who works only three days a week for ICBC because working any longer would mean he’d have to pay a user fee.

According to the health ministry, 75 per cent of CSIL clients do not pay any user fee because their income is so low. Of the 25 per cent who do pay a fee, about 50 per cent pay $10 a day or less. Another 22 per cent pay between $10 and $20 and the remainder pay more than $20 a day to be part of the program.

–Kim Pemberton Vancouver Sun March 10 2003 http://proquest.umi.com/pqdweb?did=307420041&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

2003: Governments lagging behind on aid, advocates say:

(Copyright Vancouver Sun 2003)

Help for families bearing the burden is finally coming from Ottawa, but not yet from B.C.

Home care for seniors and the disabled has finally made it on to the national agenda — and just in the nick of time, according to experts and advocates for seniors and the disabled,

With one population group entering their 90s now, another bulge scheduled to follow a decade later, and boomers right on their heels, the federal government’s budget promise to dedicate funds to a home care program just barely beats the clock, says futurist David Baxter of the Urban Futures Institute.

Unfortunately, experts say, Ottawa focused its attention on two short-term home care needs, ignoring those with chronic illnesses or permanent disabilities for whom a helping hand each day keeps them out of vastly more expensive long-term care facilities or hospitals.

And while the government in Victoria agrees home care is a good policy both economically and from a quality-of-life standpoint, it says families need to shoulder a greater share of the burden.

Echoing the words of many of the experts and advocates quoted in this series, Baxter cautions policy makers not to jump on one model of care at the expense of others. There needs to be a lot of discussion about how best to serve the population, he says.

“It needs to be multi-dimensional. It’s not just about getting people out of hospital. It may be partly about getting out of hospital, but that is not the only thing.”

Caring for seniors requires a continuum of care, gerontologists argue. From home support, in which the frail and people with disabilities get help with housekeeping and other mundane daily tasks, to assisted living to long-term facility care to palliative care.

In his budget speech, federal Finance Minister John Manley promised to contribute $16 billion over the next five years to a Health Reform Fund, which the provinces must use to expand home care, (specifically short-term post acute and end-of-life care), improve coverage for catastrophic drug costs, and enact reforms to primary care.

The provincial health ministry says it is still working out the details of B.C’s share of the federal largess. In the meantime, a committee is looking at what home care services the province should cover. It will not report to the government until September.

Liberal MP Hedy Fry, who is also a medical doctor, said she was disappointed home care was not designated as a core method of treatment under the Canada Health Act, which would have kept it in the public system.

Essentially, she says, the current system, which Manley didn’t change, means Canada has a two-tier health system — those who can afford it pay and those who can’t do without.

Others critical of the new health accord say the government’s decision not to delegate any of the new health care dollars specifically to home support is leaving at risk those people who have long-term chronic conditions.

“Home care doesn’t answer the most pressing questions for all people with disabilities and many seniors. If we can’t get assistance with daily living, we’re at risk for institutional living,” says Christine Gordon of the B.C. Coalition of People with Disabilities.

“We were looking for that key word — home support. Home care is the professional side — the nurses, the therapists. But it’s less meaningful to people with chronic conditions. Their bread and butter is the home support side — assistance with daily living.

Gordon says former Saskatchewan premier Roy Romanow, who recently concluded his inquiry into health care, left home support off the agenda entirely.

“He thinks if they [the federal government] gave money to home care, the province would free up more money for home support.

But it’s hopelessly naive to think the provinces would increase home support when they’ve been cutting it since 1997. They [the provinces] don’t see it as a part of health. They only want to provide health support to those things they can medicalize.”

Indeed, B.C.’s minister of state for long-term home care, Katherine Whittred, says government has to prioritize its “precious dollars” and she doesn’t view home support as a medical necessity despite its preventive capacities.

The number of individuals receiving home support services in B.C. dropped by 19 per cent from 1991 to 1999, to 45,529 from 55,980 clients. Yet, during this same time period, the number of British Columbians over 70 years old — the primary users of home support — increased by about 25 per cent.

Whittred says eliminating funding for housekeeping and meal preparation “is in keeping with the goal that people who are the neediest receive services.” The five health ministries are instead putting an emphasis on the personal care needs of people living at home, such as bathing and toileting, and support for palliative and end-of-life care.

But that puts a significant strain on families.

Senator Michael Kirby, in his report on the state of the health care system in Canada, said: “… the majority of informal caregivers are women, who must often simultaneously manage responsibility both for aging parents and their own children while also holding down full-time paid work.

“This combination of responsibilities can not only lead to stress- related illness and loss of work-time for the caregiver, but may also increase the risk of neglect and mistreatment of those receiving care.”

Statistics Canada says both parents work in 68 per cent of two- parent families in B.C. About 20 per cent of women also reported taking care of a senior. And there is no question they feel stressed out. An Ipsos-Reid survey released in September found 22 per cent of British Columbians have been so stressed they considered suicide.

Sally Kimpson of the Home Support Action Group, who is studying disability policies at the University of Victoria, says statistics indicate that 80 per cent of unpaid caregivers are women.

“Working-class women, the ones taking care of their own families, are also having to care for elderly parents. If you don’t think there’s health effects on them you’re crazy,” she says.

“Some families just can’t do this, or there is no family. The government is also making an assumption that all families are happy and healthy. But families are different and that doesn’t get recognized.”

The Conference Board of Canada reported in 1999 that 48 per cent of those providing personal care in the home said it was very difficult to balance their personal and job responsibilities; 42 per cent of them experienced a great deal of stress in trying to juggle their various roles; 57 per cent felt they did not have enough time for themselves; 53 per cent cut back on sleep; and 44 per cent had experienced minor health problems in the last six months.

Take the case of one 80-year-old woman in Chilliwack who is trying to care for her husband, who has emphysema, and her 99-year- old mother.

Mary-Ann Jones-Siebert, the woman’s daughter-in-law, said her mother-in-law isn’t willing to talk to the media, but she is willing to allow Jones-Siebert to discuss their situation.

“My in-laws are 80 years old and my mother-in-law is caring for my father-in-law, who has emphysema and is on oxygen, and also her 99-year-old mother, who is living on her own. I’ve been trying to get help for her, but Granny only gets one hour of home support a day.”

Jones-Siebert, who has children of her own, said she tries to help out where she can, but admits the “bulk” of the work falls on her 80-year-old mother-in-law, who herself has hip problems.

She said the 99-year-old has an old wringer-type washing machine, so her 80-year-old daughter ends up having to take the laundry home, as well as preparing meals for her mother.

She said the one-hour home support can’t be used for doing laundry or yard work and is used for just personal care. One day she’ll have her hair washed and the next day a sponge bath.

- – -

FAMILIES GIVING SUPPORT

According to Statistics Canada, there were 470,300 families in B.C. in 2002 in which both parents worked, and 116,400 single- parent families. What’s not known is how many families are in a situation like Jones-Siebert, struggling to meet not only their immediate family needs but the care-giving needs of relatives.

B.C. Health Minister Colin Hansen is unapologetic about focusing on the responsibilities of families.

“I think we’ve got to find ways of encouraging and empowering families to be the provider of first resort when it comes to the care of aging seniors,” he says. “It’s only been in recent years government has pretended to be providers of care of first resort and relieve families of that responsibility.

“We will never be able to get to a situation in terms of care for seniors where we have the kind of universal coverage that we have with those services under the Canada Health Act — which is doctors and hospitals. Today, for example, there are 188 seniors for every 1,000 working British Columbian. By 2030, it will be 433 for every working British Columbian. There is no way government can provide the range of services that I think today’s seniors have come to expect.”

University of Victoria sociologist Neena Chappell says it is a myth that seniors expect the government to look after them, or that their families don’t take responsibility for the bulk of care.

“[Seniors] take pride in doing it themselves. They are not out there saying, ‘What can I get from government?’

“There is an attitude that all seniors want to milk the system, and it’s absolutely not true.”

As for families not shouldering their share of the job, Chappell says more than 75 per cent of seniors live geographically close to one child.

“The vast majority of families come together when needed,” she says, noting her own father has moved to B.C. to be close to his children as his needs increase.

“The cuts being made suggest families can do more, but research indicates that they can’t. If they keep going the way they are going, they will over-burden themselves and both will end up in hospital.”

- – -

NEEDS NOT BEING MET

In B.C., “budget-strapped health authorities have tightened up eligibility criteria to the point that people with relatively low care needs are simply not being served,” according to a November, 2000 report entitled Without Foundation: How Medicare is undermined by gaps and privatization in Community and Continuing Care.

That document was a joint publication by the Canadian Centre for Policy Alternatives, the B.C. Government and Service Employees Union, the B.C. Nurses’ Union and the Hospital Employees’ Union.

The report says the proof of its claim is that the number of clients receiving home nursing did not increase at the rate one would expect given hospital downsizing and a critical shortage of public residential care.

“From what we hear from our clients, it’s becoming increasingly difficult to access services,” says Val McDonald said the Seniors Housing Information Program. “They’re being told [by government officials] we’re not in the ministry of clean houses. We provide health care services. The problem with that is for some people simply having some grocery shopping and housekeeping done makes the difference between them staying at home independently or going into a care facility.

“Seniors who can’t get help to do their groceries end up skipping meals, or if they can’t keep up with housekeeping may end up being evicted because hygiene is not at a high standard and it’s bothering other people,” she said.

She said 94 per cent of B.C.’s population of 550,845 seniors live independently and 45 per cent live in poverty on a fixed income of $1,000 a month, so they can’t afford to buy care.

- – -

NOT MAKING SENSE

Joannie Sims-Gould, project coordinator of the Caregivers Association of B.C. said home care workers throughout B.C. are generally finding their hours are being cut back, yet at the same time government wants to encourage more people to live independently.

“It doesn’t make any sense.” she says.

“As a response to the loss of home care services and the off- loading to families, we’re seeing a new and emerging role for our organization — advocacy.”

It’s a great time to address the issue, concludes Baxter, but the solutions must do more than reduce hospital costs. Home care should cover a wide continuum from social isolation to housekeeping to nursing care and right through to end-of-life counselling.

And it should complement other forms of institutional care, not replace them.

“Governments tend to get carried away with huge policy shifts, but the reality of the population is there isn’t a single model that works for everyone.” —Vancouver Sun March 11 2003 http://proquest.umi.com/pqdweb?did=308056101&sid=9&Fmt=3&clientId=58962&RQT=309&VName=PQD

2003: Some [Vancouver Coastal Health] staff values and attitudes that constrain these projects[People with Disabilities mentoring other PWDs out of insitiutions]:

• • Different points of view: professional vs. non-professional or peer. Peers see bureaucracy and red-tape; professionals see advocacy and become defensive. Peers feel that some staff equate disability with incapability. One said: “If Stephen Hawking were outside Pearson some staff would have him in weaving baskets.”
• • Staff concerns about confidentiality and risk management issues. There are sometimes confidentiality issues, sensitivity about working with families because peer support programs are made up of volunteers.
• • During planning for transition with Pearson one VCH staff person voiced concerns that CARMA had raised expectations at Pearson because there were more requests for home support. He suggested lowering expectations and investing in skill building for people already moved.
• • Some Continuing Care staff expressed concern about resettlement of former GPC residents – circulating stories of their unhappiness.
• • There has been opposition of VCH staff to a particular home support service provider. Independent living for some GPC staff for long time residents is difficult to accept. One resident who has moved out of GPC said: “It’s not that Pearson staff don’t care. They care a lot about what they are doing. But when I wanted to leave, they were upset. It surprised me. It’s as if they thought I didn’t like them or was rejecting their care.”
• • Staff perception is that they also work hard around discharge planning and don’t always get recognized for what they do.
• • Residents’ perceptions are that often staff are very negative around their moves to the community – “staff told me I was making a big mistake and said I would be back in afew weeks – scary.”
• • In addition as more residents move out of Pearson some staff fear loss of jobs.–Peer Support: Building Individual and Community Capacity: Evaluating Two Smart Funnded Peer Support Projects Foncusing on People with Disabilities by Lorna Romilly [June 2003] p17-18 http://www.smartfund.ca/docs/disabilities_peer_support_evaluation.pdf

2003 to early 2008:

Facility Type

Facility Name

Address / Contact Details

Type of Incident

Number of incidents since Jan. 1, 2003 to early 2008

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Aggressive / Unusual Behaviour 12

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Attempted Suicide 1

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Death 206

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Disease Outbreak 5

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Fall 107

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Financial Abuse 2

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Medication Error 2

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Missing / Wandering 18

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Other Injury 15

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Physical Abuse 4

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Poisoning 1

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Service Delivery Problems 10

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Sexual Abuse 2

Residential Care Facility Capilano Care Centre 525 Clyde Avenue West Vancouver, BC V7T 1C4 Unexpected Illness 99

http://www2.canada.com/vancouversun/features/care/vcincidents.html?appSession=025163397064970

———————————————

The information in this database [used in this section] was obtained from the Fraser Health Authority and Vancouver Coastal Health Authority in response to a series of Freedom of Information Act requests by The Vancouver Sun. The data is taken from the health authorities’ own internal databases, which contain information collected by health authority inspectors as well as incidents reported to the authorities by licensed facilities. This database contains information collected between Jan. 1, 2003 and early 2008 and may not reflect current conditions. Facilities that have just opened within the last year are sometimes given a ‘high’ risk rating until health-authority inspectors have enough information to make a proper assessment.The data may also contain errors, either because of mistakes by health authority inspectors or by facilities mis-reporting serious incidents. If you find information here that concerns you, please contact the facility in question or your local health authority for more information. If you believe any information reported in this database is inaccurate, please email us at sunnewstips@png.canwest.com and explain why you believe the information is incorrect.

2003: Paralyzed patients put through trauma

Copyright Vancouver Courier 2003)

Health authority replaced familiar staff with contract workers

Ventilator-dependent residents at the George Pearson Centre are worried cuts to nursing staff and the introduction of contract workers could put their lives in danger in an emergency.

Rudy Lawrence, president of the Council of Senior Citizens’ Organizations of B.C., said when he talked to residents at the facility for adults with severe disabilities over the weekend, he discovered housekeeping and security staff had saved residents’ lives in at least a dozen situations by reconnecting their ventilators. The 44 security and housekeeping employees have since been replaced by contractors.

“If you have seen Christopher Reid, who used to play Superman, well he’s in pretty good shape compared to some of them,” Lawrence said.

“They are strapped into a chair and the ventilator just sits on your neck. All it takes is a bump and it’s disconnected.”

Lawrence said one resident, who had lived at the facility since a motor vehicle accident 14 years ago, has experienced eight disconnections. On three occasions, his ventilator was reconnected by housekeeping staff. [During my time at GPC, 2005-2007, my vent tube disconnected about 8 times.] A patient can only survive for about three minutes without a ventilator. [Depends on the patient.]

“It’s not the normal function of security staff and housekeeping, but any person with half a brain can plug a ventilator back in if the patient points to it.”

Lawrence said contract security and housekeeping staff, who are paid just over half what their predecessors employed by the Vancouver Coastal Health Authority earned, are being told not to intervene in medical situations. Aramark has the housekeeping contract, while Paladin is handling security.

“That may make sense, but at the same time they’ve reduced the number of LPNs [licenced practical nurses] on the ventilator ward from five to four and increased their duties at the same time,” Lawrence said.

The George Pearson Centre, at 700 West 57th Ave., is home to about 120 residents, 30 of whom are on ventilators.

Many have advanced multiple sclerosis, cerebral palsy and severe spine and brain damage. About 60 per cent of the residents are seniors, some who have been there for many years.

“It is very hard to communicate with them,” Lawrence said. “That’s also a problem because the old staff knew the patients and had developed ways to understand them. It shouldn’t be up to us to blow the whistle, but the residents can’t speak for themselves.”

The Council of Senior Citizens’ Organizations of B.C. is an umbrella group comprising 46 seniors’ organizations with 52,000 members.

Clay Adams, spokesman for the Vancouver Coastal Health Authority, said officials had a “productive discussion” with George Pearson residents last Thursday.

“There were issues around losing employees that were part of the patients’ community for a number of years. We explained why we made the changes and there was no heavy emotive response,” he said. “Obviously, we did not do a good job of integrating the new staff and we are trying to do a better job of that.”

Adams said housekeepers and security staff should never intervene in a medical situation. Instead, they should seek the help or advice of medical staff. –David Carrigg Vancouver Courier Nov 9 2003 http://proquest.umi.com/pqdweb?did=447868331&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

2005: “A week ago, the Speech from the Throne outlined our intentions for the golden decade ahead. Our future is bright, our vision is clear and our goals are bold…To build the best system of support in Canada for persons with disabilities, special needs, children at risk and seniors.”

–Premier Gordon Campbell

http://www.bcbudget.gov.bc.ca/2005/stplan/default.htm

2005: Tapes may reveal senior’s treatment, family says

All material copyright Bell Globemedia Publishing Inc. or its licensors. All rights reserved.

Woman fights injunction against showing nursing-home video of father’s last days

A woman who says her 90-year-old father was mistreated in a Kamloops nursing home is fighting in court today to show secretly made tapes that recorded the last months of his life.

Judy Sellin hid a camera in a teddy bear in her father Stephen Piccolo’s room at the Overlander extended care facility. The camera, connected to a remote transmitter and eventually to a VCR, recorded 240 hours of tape that Ms. Sellin says details the undignified way her father was treated.

But the Interior Health Authority, which runs Overlander, where Mr. Piccolo stayed for 13 months before his death last October, obtained an interim injunction against showing the video, arguing it was defamatory and violated employees’ privacy.

Now, Ms. Sellin is battling that injunction in a court case that may settle a balance between those rights to privacy and the ability of a family to monitor a member’s care.

“That was my father’s private room,” she said. “It was his home. It’s his privacy that should be protected.

She and her son, Reece, put up a seven-minute documentary spliced from the tapes on the website of their advocacy group, Elderly Liberation Movement Society of British Columbia.

Within 48 hours, the courts ordered that tape off the Internet. Although some U.S. websites have openly flouted the ban, the Sellins and B.C. media can’t show the tapes.

In one tape, Mr. Piccolo asks repeatedly for a glass of milk, according to court affidavits. When he gets one, an aide says, “If I told you it was horse pee, would you believe me?” Further in the same affidavit, Mr. Piccolo is described as trying to pull a sheet over his legs for warmth, but he is ignored for nearly two hours.

The video was defamatory, said the chief operating officer of Interior Health, Al Martin.

“We reacted immediately with an internal review, a second internal review, and then an external review,” he said in an interview.

“We take these things very seriously. Seniors are very vulnerable individuals and it’s imperative they be properly cared for.”

Those reviews made small recommendations to improve care at the Overlander facility, but cleared the health authority, he said.

The authority is pursuing the suit to keep the tapes from being shown because it’s preserving its reputation, he said.

“We feel the tapes were inappropriately obtained, and we’re suggesting there are some concerns regarding the credibility,” he said.

“We need to protect our organization’s credibility and reputation,[See sections below about Fanny Albo] as well as our staff.”

Because of the court injunction, no one investigating the role of Interior Health was able to see the tapes, he said.

But Mr. Martin said the investigators conducted interviews that were effective substitutes, he said.

The video is also a powerful weapon for the Sellins’ advocacy group, which is calling for a province wide audit of seniors’ care facilities, said Ms. Sellin’s lawyer, John Drayton.

“They want attention to this concern about senior health care. If this is going to get them more public interest, then they want to show it.”

The Sellins are prepared to blur the faces and modify the voices of employees in the tapes to get the tapes to be seen, Mr. Drayton said.

Ms. Sellin said she doesn’t expect another investigation from Interior Health if the tapes come out. But, she said, the public has an interest in seeing the tapes, and will call the provincial government to start an audit, she said. Jonathan Woodward Globe & Mail Sept 27 2005 http://proquest.umi.com/pqdweb?did=1056299341&sid=5&Fmt=3&clientId=58962&RQT=309&VName=PQD

2005 ‘Teddy tapes’ spark legal war

(Copyright The Province 2005)

ELDER CARE: Judy Sellin took charge when she sensed her dad had been neglected, setting up a secret camera at his care home to find the truth

The teddy bear that sat above Stephen Piccolo’s bed in a Kamloops nursing home last fall got to see it all.

For two months, he sat there on top of the dresser looking innocent — and looking down on what it’s like to spend your twilight years in government care. Right down to the diaper changes.

If the staff at Overlander Extended Care Centre wondered why the grumpy, 90-year-old former rancher had developed a sudden fondness for small stuffed animals, none of them thought to check.

This was the kind of teddy you buy at Radio Shack.

Hidden inside was a tiny camera that, for eight hours a day, transmitted sounds and images from the old man’s private room to a remote receiver and, ultimately, to a VCR.

The teddycam was placed in Stephen Piccolo’s private room by his daughter Judy Sellin and her son Reece. Just the previous year they had formed an advocacy group to campaign for a Royal Commission into what they see as the declining state of residential care for B.C.’s elderly.

Today some 240 hours of footage of Piccolo in the weeks before his death last October sits in the Sellins’ home-based office of the Elderly Liberation Movement Society (ELMS).

The tapes contain what the Sellins say is powerful evidence that some B.C. seniors are neglected and even abused in an overburdened system that has encouraged low staff morale.

What teddy saw, however, the B.C. public cannot.

At least that’s the intent of a B.C. Supreme Court injunction obtained by the Interior Health Authority (IHA) shortly after the Sellins posted a seven-minute, documentary-style preview of the tapes, entitled For the Sake of Seniors, on their website. The preview was ordered removed and the Sellins, along with the B.C. media, are prohibited from showing or distributing any of the secretly obtained footage — even though it can still be seen on at least one U.S. website.

The ban on the tapes is so far-reaching that IHA officials and the independent consultant they hired to look into the Sellins’ public allegations were not allowed to view any of the footage as part of their investigation.

The report on that investigation has concluded that there was no wrongdoing on the part of Overlander staff, two of whom have returned to work after a short spell of paid leave.

But it will be up to the courts to settle the exchange of lawsuits between the Sellins and Overlander staff. Apart from the allegations of neglect, abuse and defamation, the case will involve one of the most complex legal and ethical dilemmas of the 21st century — how to balance the desires of families to monitor the care of their loved ones against the privacy rights of employees.

n n n

Judy Sellin says her father was in full agreement with the decision to install surveillance in his room.

Stephen Piccolo had been at Overlander for just a few months and had complained repeatedly about various forms of neglect and what he claimed was “rough” treatment — including an allegation he’d been hit in the chest.

Sellin says her father suffered depression and mild dementia and could often be cranky. But given what she’d seen herself at Overlander, she took his complaints seriously. She says secret surveillance was the only way her family could see for themselves whether Piccolo’s complaints were justified.

It was her experience in finding good residential care for her divorced parents that led to the formation of the advocacy group in 2003.

Just finding them each a place was hard enough. But Sellin says what horrified her the most was the grim state of life inside the government-run facilities she visited around Kamloops.

The campaign has taken the Sellins to nursing homes across B.C. In two years, ELMS has heard from hundreds of people about the impact on their parents of years of budget cuts and layoffs — chronic over-sedation, lack of activities, residents being put to bed at ridiculously early hours and put into diapers as an alternative to assisted toileting.

But her campaign for a full inquiry into the extended-care system began in earnest when her father became a resident of Overlander in the summer of 2003.

“I have even seen seniors eating their own emesis in the dining room as a result of them coughing so hard during a meal,” says Sellin.

“The plate was not replaced with fresh food. In the same dining room, there is a ‘behavioral table’ where residents who don’t ‘act appropriately,’ whatever that means, are placed.”

She claims she has helped Overlander residents escape from a small “TV room” where they’d been put for bad behaviour.

“The door is closed on them and you can hear their muffled cries begging to be let out,” says Sellin. “There is a window at the top of the door. I have to stand on my tiptoes to peer in. It’s like a little prison and that’s how it’s used. I can’t count the times that I’ve opened that door for these precious seniors and held their hands and talked to them.”

Sellin claims that within 24 hours of installing a surveillance camera in her father’s private room, she captured a scene in which he appears to be struck in the abdomen by a staff member who was frustrated in her attempts to administer eye-drops.

The scene is not included in the seven-minute “preview” that was briefly posted on the ELMS website.

According to an affidavit entered by Judy and Reece Sellin this month, and to people who saw the video before it was banned, the “preview” shows:

n Piccolo being fed bacon and eggs in spite of the fact that, according to the Sellins, he is unable to eat solid food. He can be seen either coughing or vomiting the food back up while repeatedly being given more.

n A care aide handing Piccolo a glass of milk and, when he asks what it is, replying: “If I told you it was horse pee would you believe me?”

n Piccolo lying on his bed just 48 hours before his death — unclothed and uncovered from the waist down for nearly two hours. He can be seen trying to pull a sheet over his legs.

The affidavit also alleges that Piccolo’s requests for fluids were repeatedly ignored and that he was admitted to hospital to be treated for dehydration.

In an interview with The Sunday Province, an Overlander care- aide says she too believed that Piccolo was in need of something to drink when she went to visit him a few days before his death.

The employee, interviewed on condition that she not be identified, explained that she was no longer one of Piccolo’s caregivers at the time but had dropped into his room to see how he was doing.

“His skin was all dry,” she says. “He was dehydrated. I think he was taken up to hospital.”

The employee says she’s one of a small number of Overlander staff who support the Sellins’ activism — even their decision to document Stephen Piccolo’s day-to-day care through a hidden camera.

She says cutbacks have produced a huge increase in her workload. Some care aides, she says, have handled the extra burden better than others who have developed an “attitude” against the people in their care.

“It’s like: ‘You’re not going outside today,’ explains the care aide. “‘Well, why not, it’s nice out.’ And it’s because they don’t want to take her out. It’s stuff like that. Just really abrupt. Or they take their trays away when they’re not finished eating.”

IHA, acting on behalf of numerous employees in a defamation and breach-of-privacy lawsuit against the Sellins, says in court documents that some staff members felt “sick” and “flabbergasted” to learn that they had been secretly videotaped.

The care aide we spoke to, however, said she understands the Sellins’ decision.

“Al Martin [CEO of the authority's Thompson-Cariboo-Shuswap region] said there was no wrongdoing,” says the care aide. “The investigators didn’t view the tape. So how can they come to that conclusion?”

She added: “I feel that every room should have a camera in it. Just so management is aware of what’s going on.”

Other people with parents at Overlander have also shown support for the Sellins — but few were willing to speak publicly about their complaints.

One woman we interviewed said she had no idea there was a hidden camera in Piccolo’s room even though her mother shared a nearby room with three other women.

“When you’re not there you want to know what’s happening,” says the woman, whose mother died last year.

She says that shortly after her mother was admitted to Overlander, the family was told by administrators that staff would only be able to get her out of bed once a day.

“They said they’d get her up for breakfast, that she’d stay up for lunch and then after lunch they’d put her down and she would stay in bed until the next breakfast,” says the daughter.

She convinced administrators to allow her mother to be put back to bed for an afternoon nap and then allowed up again for dinner.

The woman says her other major concern with Overlander was what she observed in the dining room. The meals were so rushed, she says, that she adjusted her work schedule in order to come in twice a day to feed her mother herself.

She says she saw care aides putting food and liquids into people’s mouths faster than they could swallow.

“I didn’t want her being stuffed like a turkey,” she says.

On Thursday, IHA officials met to approve the investigator’s report into the Sellins’ allegations. They had promised to make it public but CEO Martin said after the meeting that it would continue to be kept under wraps for reasons of staff confidentiality.

Martin, who presides over 22 nursing homes in his region, said the report concludes that Piccolo was given “appropriate quality care” by Overlander staff.

He said he viewed footage on the Sellins’ website before the injunction and didn’t see any real neglect or abuse — despite the dramatic titles and music.

Martin dismissed Judy Sellin’s claim that she had assisted Overlander residents who’d been confined in a small room.

“If that practice was happening it would be stopped immediately,” he said.

Martin said he’s confident that Overlander offers a high level of care. “It’s one of the best [facilities] in my area,” he said.

–Peter Clough May 29 2005 http://proquest.umi.com/pqdweb?did=846723661&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

December 2005: when I refused to consent to live in GPC VCHA served me with papers that they were going to request a court order authorizing the use of force to take me from LGH, where due to a series of unfortunate events I was staying, to GPC, and to authorize the use of force to remove me from any VCHA controlled site if I entered them (other than GPC) and take me by force to GPC. These papers are in the files of the law firm Lakes, Straith & Whyte.

2005: LGH evicts patient, RCMP called: NV man refuses move to facility in Vancouver

(North Shore News 2005)

Lions Gate Hospital administrators called the RCMP in Thursday as hospital staff attempted to force a patient with muscular dystrophy, a debilitating muscle-wasting disease, to move to another facility against his will.

Paul Caune, a longtime North Vancouver resident who relies on a ventilator and who requires assistance to move from a bed to a wheelchair, refused to be transferred to the George Pearson Centre, a care facility on the south side of Vancouver.

“I was informed that basically I have two choices. Either I take the bed that’s now available at Pearson, or we force the hospital . . . to get a court order,” said Caune. “Presumably the Mounties would have to enforce that.”

As of 10 a.m that morning, Caune was declared a trespasser by the hospital. Vancouver Coastal Health, the authority that runs the hospital, is now seeking that court order to force his removal.

Caune, who has been a patient in the neurology unit of LGH for six months, fears the move would isolate him from his family, and reduce his quality of life.

George Pearson Centre, located at 700 West 57th St., will be far more difficult for his loved ones to reach than his current location, said Caune. His parents, who are both approaching 80, will be unable to make the commute from here very frequently, he said, removing a major source of emotional support.

The new facility would also place him in a dormitory-style ward with up to nine other respirator-dependent patients, he said. His privacy, security and independence would all be compromised.

“It’s impossible in that setting to lead a normal life, which is what I’ve been leading,” said Caune.

Viviana Zanocco, a spokesperson for the health authority, said the Pearson facility is not nearly as bad as Caune makes it out to be.

“He said quite a few things about George Pearson that are simply untrue,” said Zanocco.

Caune’s claims that he would only be bathed once a week, and that he would only be taken out of bed once in 24 hours are false, she said. [In 1997 when I lived for nine months in the NS nursing home Evergreen House residents got showers once a week; it was well know GPC residents got showers once a week; when I was there, 2005-2007 I like every other resident got showers once a week; once I went three weeks without a shower]His treatment, she said, will be suited to his needs.

“That depends on the patient. Some people like having a bath once a week. Some need it twice a week,” she said. “It’s routine- oriented.”

As to whether there was a dormitory-style living area at the Pearson centre, she said she did not know off the top of her head.

Caune had been living in a group care home run by the North Shore Disability Resource Centre until a bout of pneumonia put him in hospital in June. It is to this care home, or some equivalent, that he wants to return now, but the home lacks the budget to support his advancing condition.

“We just weren’t getting enough funding from Vancouver Coastal Health,” said John Newman, a representative for the facility.

Caune now requires two people to move him from bed to wheelchair and back, and the home cannot support that in its budget.

Caune could be accommodated on the North Shore if he and others with similar needs were to share caregivers in a single, small facility, argued Newman.

Zanocco said it is not that simple.

“There is more involved than whether or not there is someone there who can lift him,” she said.

As to the cost of supporting Caune at the new facility, Zanocco said it could not be broken down that way, because all residents share staff and amenities.

In addition, there is more at issue here than just Caune’s care, said Zanocco.

“When somebody is taking up a couple of hospital beds, that becomes an issue in terms of the hospital’s ability to care for people,”

she said. “So on behalf of other patients who need that care, we have to act.”

Caune understands the hospital’s concerns, but says he feels justified in resisting. He does not want to stay at Lions Gate; he just wants to stay on the North Shore.

“I don’t want to risk being stuck (at the Pearson centre) for the rest of my life,” said Caune.

Why the health authority called in the Mounties during the Thursday confrontation is not entirely clear. The health authority maintains that the RCMP presence was required only to maintain order, not to add weight to the hospital’s case.

The attending officer, Insp. Howard Eaton, said that he had not wanted to get involved initially as he did not see it as a police matter, but that the health authority asked him to attend in case Caune’s supporters became disruptive. When he got there, though, he was asked by a hospital official to speak with Caune.

“I said I really don’t know what I can say to him, I mean it’s not a policing issue,” said Eaton. “I’m sure they were probably trying to put a little leverage on him.”

It is possible that a solution may be found to the dispute, and that a forced removal might be avoided, said Caune.

During Thursday’s confrontation, he agreed with a hospital administrator that he would move to Pearson for a maximum of two years, if the health authority could promise that they would create a place for him within that time, he said.

Zanocco was not aware of such an agreement, but she noted that the health authority could likely make no such promise, as the creation of appropriate accommodation on the North Shore was beyond the health authority’s control.

“If something is created, of course he’ll be moved back,” she said, but added, “I don’t see how we’d make a commitment based on something that isn’t in our control, unfortunately.”

For now, the health authority is still seeking a court order for Caune’s removal. How, exactly, it will be enforced is unclear.

“I don’t know,” said Zanocco. “To my knowledge this is the first time we’ve sought a court order in a situation like this, so I’m not quite sure what the process would be.”

Eaton said that he or another officer would likely attend as the court order was being enforced, but that the RCMP would by no means become physically involved.

“I’m not going to be touching the man,” he said. “We’re not qualified to be moving people.”

Caune is not sure how it will play out, either.

“As far as we all understand I cannot be made to live there without my consent,” he said. “Where they would remove me to I have no idea, since we all know that I have really no other place to live.” –James Weldon North Shore News Dec 11 2005 http://proquest.umi.com/pqdweb?did=944949511&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

2005: Court order could be needed to move patient

(Copyright The Province 2005)

A man suffering from deteriorating muscular dystrophy is refusing to move out of the North Shore’s Lions Gate Hospital to a long-term care centre in Vancouver.

But the Vancouver Coastal Health Authority says the patient, who needs help getting in an out of bed and relies on a breathing apparatus, cannot occupy an acute-care bed at Lions Gate when the George Pearson Centre in Vancouver is equipped to provide long-term care.

An authority official confirmed that a court order will be sought to move Paul Caune from Lions Gate, where he has been housed for the past six months. Caune has vowed to resist.

“I’ve got muscular dystrophy which gets worse as I get older. I use a wheelchair and I don’t have the physical strength to get

myself out of bed,” he said.

His resistance to moving from the hospital is based on three factors, he said.

He believes that the George Pearson Centre provides patients with one assist to get into bed and one assist to get out of bed per day. He also claimed patients at Pearson get only one shower a week.

He said his elderly parents live in North Vancouver and will not be able to visit him as often if he is located in Vancouver.

“South Vancouver will be a very long way for my parents to visit. My father is 80 and my mom is 76,” he said. “I have lived on the North Shore all my life.”

Caune said he also hopes to put pressure on the health authority to develop resources on the North Shore to look after people with similar needs.

VCHA spokeswoman Viviana Zanocco said Caune’s claims about the George Pearson Centre are not accurate.[See above section to see how wrong Zanocco is] And she said that Lions Gate is not the place for someone who needs long-term care.

She said Caune occupies two acute-care beds [This was not true; I used only one bed] at the hospital because of the amount of equipment he needs, and acute-care beds need to be freed up for other patients.

Zanocco said a facility that can cater to Caune’s needs does not exist in North Vancouver.

Caune said he will resist any attempt to move him.

On Thursday, RCMP were called to the hospital but declined to intervene.

Health authority spokeswoman Maureen Melachuk said the organization will seek a court order to compel Caune to move out of the hospital. When the order will be sought is not clear. –Salim Jiwa Vancouver Province Dec 12 2005

http://proquest.umi.com/pqdweb?did=940970421&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

Dec 14/2005: George Pearson Centre’s reputation unfairly tarnished in wrangle over VCHA patient transfer, says BCGEU”

The union that represents 200 care givers at a special care facility in Vancouver says criticisms raised in the media about the standard of care [I could only get a shower their once a weak; I had skin problems I never had before; I had better trach care in the group home I had previously lived in etc.] at the George Pearson Centre are unfounded.

“The issues surrounding the kind of care at Pearson have been raised as part of a disagreement involving the transfer by the Vancouver Coastal Health Authority of a patient [that would be me] from Lions Gate Hospital in North Vancouver,” says BCGEU president George Heyman.

“They are completely unfounded – and the unfortunate result has been to cast doubts on the quality of care provided at the facility and on the work of our members who look after more than 100 special needs residents.

The Pearson Centre, says Heyman, is a unique 120-bed facility that provides a home for adults with physical and psychological disabilities.

“Our members who work as Licensed Practical Nurses [about six month after this article was posted a GPC LPN threatened to leave me laying my own feces if I didn't agree to go to bed at 9pm, instead of 10pm as was my preference, from then on; I refused and she made good her threat] and care aides are very committed to the needs of their residents who have high levels of disabilities including spinal cord injuries and those who’ve suffered neurological damage. They provide top quality care under very challenging circumstances,” says Heyman.

“Yes the building is not new but the facility is well run, and the setting, 12 acres of parks and garden, is quite wonderful.”

Other BCGEU members in support services and maintenance also contribute to the high care standards at the facility, he says. The average age for residents is in the 50s, the youngest in their 20s and the oldest in their 80s.

Heyman says the facility was just reviewed as part of the regular accreditation process undertaken by the Canadian Council on Health Services Accreditation. “From all that I’m hearing from within the facility and the VCHA, Pearson received some very positive feedback from the council about the quality of care that’s provided for residents.” [ http://www.bcgeu.bc.ca/George_Pearson_Centre_reputation_unfairly_tarnished_in_wrangle_over_VCHA_patient_transfer   ]

2005: Disabled LGH patient agrees to Pearson move

(Copyright North Shore News 2005)

A bedridden man who was threatened with eviction from Lions Gate Hospital left the facility voluntarily this week when he struck a deal with the Vancouver Coastal Health authority guaranteeing his eventual return to the North Shore.

In signing the agreement, Paul Caune, a six-month LGH resident with debilitating muscular dystrophy, spared the hospital the need to obtain a court order for his removal.

In a letter dated Dec. 12, Randi Enweani, director of the surgery program at LGH, confirmed that the health authority is “committed to returning (Caune) to the North Shore to an appropriate facility within two years.”

The resolution was greeted with mixed feelings from those who supported Caune in his protest.

“He said he didn’t get 100 per cent of what he wanted, but he got as much as he could,” said John Neumann, executive director of information and advocacy services at the North Shore Resource Centre, who has been advocating on Caune’s behalf. “It’s bittersweet.”

The health authority said that they were happy with the arrangement.

“We’re very pleased that we reached an agreement that would put him in a facility that’s appropriate to his care needs and that he’s satisfied with,” said Viviana Zanocco,

Caune, who relies on a ventilator and requires assistance to move, had refused to be transferred from LGH last week out of fear that the new facility would isolate him from his social network and result in a significant decline in his quality of life.

The hospital, saying it needed the bed for more critically ill patients, called the RCMP last week and warned Caune that they would seek a court order to force him to move if he continued to refuse to co-operate. That measure was avoided with the current agreement.

While Caune was granted most of the conditions he was seeking, he told the North Shore News Friday that he is very unhappy at the George Pearson Centre, the Oakridge-area care facility to which he was moved. While the staff are “wonderful,” he said, the open, 10- bed ward where he is staying is like a fishbowl. “This is how society treated disabled folks in the ’50s, ’60s and early ’70s. Basically, you warehoused them,” said Caune. “It’s just gonna grind your spirit down.”

The ward, where residents’ beds are separated by curtains, offers very little privacy, and the noise of 10 ventilators makes it very difficult to sleep. The facility, on a large parcel of land, is isolated from, rather than integrated into, the community, he said. It is a stark departure from the care facility where he had lived a “normal life” on the North Shore.

Since the News’ front page story of Dec. 11, there has been much debate over whether Caune’s criticism of the standards at the Pearson centre, the Oakridge-area facility is justified.

In a letter to the News, Cathy McLennan, a North Vancouver resident whose brother has stayed repeatedly to Pearson, said Caune’s portrayal was well founded.

“The rooms are dormitory style, it was very noisy due to all the respirators running and (my brother) never slept more than a few hours a night when he was there,” wrote McLennan. “After spending time with my brother at the facility, I can assure you (Caune’s) worries are justified.”

Linda Korbin, Executive Director of the B.C. Association of Social Workers, gave a similar assessment. “George Pearson Centre does not represent an adequate housing for people with disabilities,” she wrote in a letter. “It is an institution in which residents do not have the privacy, independence or personal support that most of us take for granted. Mr. Caune is wise to refuse to move there.”

But the types of concerns raised in the media are “completely unfounded,” said the B.C. Government and Services Employees’ Union in a release this week. The union represents many LPNs and care aides who work at the facility.

“Our members . . . are very committed to the needs of their residents,” George Hayman, president, said in the release. “Yes, the building is not new but the facility is well run, and the setting, 12 acres of parks and garden, is quite beautiful.”

A number of Caune’s specific complaints were not accurate, said Stephen Howard, communications officer for the BCGEU. There is no cap on the number of lifts per day [This is false; the staff routinely, in spite of the fact that there was no policy to do so, told residents GPC has a ‘one-up-one-down rule; in 2007 I was present at a managers meeting in GPC where the Manager of Residential Services admitted she had no idea the staff had been telling residents the one-up//one down rule is policy and she declared she would tell them to stop doing this; this manager worked at GPC for six years], he said, and while residents only receive one shower or bath a week, they also receive a full “bed bath” daily and a weekly hair wash.

There are also some private rooms and other spaces where residents can go to spaces to be alone or with visitors, he added. “Pearson isn’t a prison.”

Open wards (in addition to private rooms) was in fact what the residents wanted, said the health authority’s Zanocco. “Residents didn’t want to be in rooms by themselves cause they felt a little bit isolated,” she said.

While she acknowledged that there are waiting lists for those who move from the ward to private rooms, not everyone in the ward wants one, she said.

Caune will be lobbying the health authority to move him back to the North Shore as soon as it can. “I don’t want to end up like one of those people who are dead inside,” said Caune. –James Weldon North Shore News Dec 18 2005 http://proquest.umi.com/pqdweb?did=943744011&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

2005: Forced LGH removal heartless

(Copyright North Shore News 2005)

Dear Editor:

My brother also has a muscle disease. He relies on a ventilator and needs 24-hour care. When he was living at home with my parents, he would stay at George Pearson Centre a couple of times a year while they took a much needed vacation. The rooms are dormitory style, it was very noisy due to all the respirators running and he never slept more than a few hours a night when he was there. People have different sleeping patterns and there was always someone awake, wandering around or needing assistance of some sort.

Caune is worried about losing his privacy, security and independence — after spending time with my brother at that facility, I can assure you his worries are justified.

Moving him to Vancouver away from his family? Heartless!

Cathy McLennan

North Vancouver

–North Shore News Dec 18 2005 http://proquest.umi.com/pqdweb?did=952079821&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Psychiatric ward reminiscent of Karloff movie

Vancouver Sun

Monday, July 24, 2006

Page A7

By Susan Katz

Imagine you’ve recently given birth and you’re shuffling down the hospital’s maternity ward hall to the common toilet/shower room. There, you find toilets that splash back your urine and feces, a showerhead with barely a trickle of water pressure and a stagnant pool of hair, scum, and soap pooled in the poorly-drained cement floor.

Or you’re a cancer patient, in hospital for a few days to receive your first chemotherapy treatment. You discover a bedbug on your arm, and must bathe, then relocate to the only available room, a cot in the doctor-patient interview room. During the next few days you are frequently ejected and must wait in a dreary hall or lounge while your room is used for meetings. Your belongings are destroyed, unusable due to fumigation.

Of course, these scenarios never occur on a maternity or a cancer ward. What patient, or their family, friends, and doctors, would tolerate these horrific scenarios in a modern Canadian hospital?

Both of those stories and more do happen, though, in Royal Columbian Hospital on the psychiatric ward. I’m describing my experience on Sherbrooke Centre 2 (SC2). Decrepit, unsanitary wards are deemed acceptable for mentally ill patients, facilities that would elicit a firestorm of protest, newspaper articles, and question-period invective in the legislature were they to be found on any other ward in any hospital.

I arrived on SC2 late on a January [2006] night, exhausted from a long day waiting in Emergency, and was settled into a shared room with a makeshift partition of fabric separating me from my roommate. I discovered an insect on my arm, quickly identified as a bedbug by the nurse, and was whisked away to the shower.

The room, and all my belongings, including a valuable and treasured pair of handmade slippers, were quarantined for fumigation, and then disposed of due to the potentially toxic nature of the fumigant.

I was relocated to a cot in the ward’s Interview Room. I was well enough after a few days to realize that I should be in a real room, and asked a nurse to be transferred. She told me there was nothing available, but they “hadn’t forgotten about me.” Unconvinced, I found an unoccupied room myself and was allowed to move in.

My room and common areas were decrepit and depressing . . . no pun intended. Patients with mental illnesses are as affected by their surroundings as any patient, if anything more so. Yes, I eventually had a private room, but tiny, the floor covered with pallid bare linoleum, furniture old and battered, the walls painted the dullest of institutional shades. The one long, narrow hallway was of more cold gray linoleum, buttressed by a window and bench at each end, where patients sat or paced up and down all day, a feeling of imprisonment rather than health care.

Lounge space at SC2 is dismal for patients or their rare visitors, which deepens and worsens the isolation and shunning already experienced by persons with mental health difficulties. The television lounge is a darkened cavern with a beyond-old reclining chair reminiscent of a Boris Karloff horror movie.

In the other tiny lounge the radio blares incessantly while adults colour for recreation, with yet another bare gray linoleum floor and more institutional walls, the only signs of life coming from the outside window.

Reasonably bright, comfortable and cheerful facilities are as critical to the recovery of a psychiatric patient as pain control is to a cancer patient, or vibrant upbeat decorating to children and their families on any pediatric or maternity ward.

Optimistic paint colours and wall decor, modern furniture, standard-quality hospital washrooms, modest carpeting, meaningful interior design and activity space, plants for patients to tend and enjoy. These simple, inexpensive changes would more than pay for themselves by reducing costly in-hospital care time, freeing up funds for broader solutions to mental health care, such as public awareness and education, enhanced funding for community-based mental health teams and programs, and increased investment in research.

Those of us who arrive at Sherbrooke Centre have medical conditions we hope to manage after our stay, like any other hospital patient. We deserve respectful treatment.

The serious problems that I encountered on SC2 would never be tolerated on other wards or in public places at any Canadian hospital. They exist because of the degrading, dehumanizing, depersonalizing, and institutionalized stigma our society applies towards people with mental illnesses.

http://proquest.umi.com/pqdweb?did=1083261891&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Couple separated by health authority after 70 years; woman dies within days

Copyright Canadian Press Feb 21, 2006

ROSSLAND, B.C. (CP) – A woman who had been married for almost 70 years died two days after Interior Health Authority officials separated her from her husband rather than leave them together in hospital.

The move outraged the couple’s two sons who said residents of the Kootenays, where some hospitals have been closed or had services reduced, should make their complaints known.

The B.C. government, in its first term in office starting in 2002, closed some rural hospitals and reduced services in others throughout the province in an effort to reduce spending.

The couple’s tragic story, aired Tuesday night by Global-TV, began when the husband injured his back and was sent to hospital in nearby Trail.

Al and Fanny Albo were married in 1936 in Rossland and ran a gas station they built themselves. They had three sons.

“My mother and dad have been together for 69 years and June 1 would have been their 70th anniversary,” a tearful Jim Albo said in the broadcast.

But last month his 97-year-old father hurt his back and was sent to the Trail hospital.

Not long after, his 91-year-old wife fell down and had to go to the same hospital.

Interior Health Authority officials said the elderly woman could no longer live on her own and needed help, said Jim Albo.

But there were no beds available in the West Kootenay area where Rossland is located.

“Unfortunately, Interior Health in their wisdom, or un-wisdom, decided to close (the Rossland hospital) and (a longtime care home in nearby Trail),” said the son.

The closest bed for the elderly woman was in Grand Forks, about an hour’s drive from Rossland.

Jim and Jerome Albo asked Interior Health to allow their mother to remain in the Trail hospital with their father.

“I said my mother is not going to live to the end of February. Why would you do this?”

He said Interior Health officials gave him no options but to have his mother go to Grand Forks.

The move was supposed to take place Monday but last week a local doctor decided to move the woman that day.

The sons said she barely had time to say goodbye to her husband.

“They wheeled her in her the transfer bed, the two ambulance attendants, and said, ‘Say goodbye to your husband,’” said Jim Albo, his voice cracking with emotion.

“They never even gave my mom and dad a minute together. He wasn’t able to get out of bed to give her a kiss, or hold her hand, or anything.”

The woman was sent to Grand Forks and died two days later “by herself, with nobody around.”

Interior Health refused to comment, citing patient confidentiality but they offered their condolences in a prepared statement.

“Her medical condition was such . . . that the congestive heart failure wasn’t getting better, it was getting worse,” said Jerome.

http://proquest.umi.com/pqdweb?did=992887901&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: I was abused by some of the staff of GPC.

2006: a VCHA Director told me that even if she had proof that a certain VCH contractor had violated the BC Health Care Consent Act at my expense she “would do nothing”. This Director was paid over $100, 000 by the taxpayers in FY ending March 31,2009 http://www.vch.ca/media/2009_remuneration_expenses.pdf

2006 : “Ms. Kennedy [a representative of the BC Ministry of Education] was asked [under oath] whether any effort was undertaken by the Ministry of Education in response to these concerns [see below]. She responded:

A: We have taken one first step towards bringing, aligning the definitions and the assessment practices of all the ministries for spectrum disorder together; that is the first step in trying to integrate to meet the kids’ needs. Starting July 1st there will be new guidelines for autism spectrum. So it’s a baby step, we hope, something that will be a big improvement in the future.

Q: And, in the meantime, for the Darren Hewkos [see above] of British Columbia, what has been done?

A: Nothing.”[ Hewko v. BC p84]

Madame Justice Koenigsberg found “Ms Kennedy to be an excellent witness. She was knowledgeable, straightforward and candid, particularly in the Ministry’s [of Education] attempts to be responsive to the needs of autistic children.” [ Hewko v BC p83]

The concerns referred to in this section are “education issues identified by parents involved in the Auton/Anderson litigation thought to be of greatest concern, including

*lack of expertise of trained aides and teachers in the area of autism;

*lack of commitment to integrated and coordinated approach between school and home environments and

*lack of consistency between behaviourial interventions programs beg implemented in the school and in the home.” [Hewko v BC p84]

http://www.autismsocietycanada.ca/pdf_word/Judge%20Koenigsberg_re_HewkovBC_11_03_06.pdf

2006: I was told by a resident of GPC who’d lived there since the early 1970s that we shouldn’t put certain GPC residents comments into the Residents Council minutes to prevent “retaliation” from the GPC staff..2006: a woman, since deceased, who claimed she’d been living in GPC for 20 years (1986 to 2006) told me, “We can’t say what really goes on here, because if we did the staff would retaliate against us.”

2006: Albo tragedy no surprise

(Copyright (c) 2006 Black Press Group Ltd.)

Editor:

The tragic and sad death of 91-year-old Fanny Albo two days after she was forcibly transferred from Trail to Grandforks by IHA officials should come as no surprise. Seniors advocates, including myself, have been warning the IHA repeatedly since 2002 that the closure of intermediate care homes and long-term care beds would ultimately result in a breakdown of the entire healthcare system.

I’ve written some 13 articles on the subject, made numerous submissions and presentations and requested a public inquiry relative to seniors care and housing. I’m currently conducting a comprehensive research analysis of the complaint/accountability process as it pertains to privately delivered seniors care and housing in B.C.

Seniors advocates in B.C. have to be a tough breed because the Ministry of Health and the Health Authorities do their level best to marginalize, discredit, impede, exclude and sue them for speaking out. It’s become a blood sport reserved for only the most hearty of souls. The government has millions of dollars at its disposal to avoid and extinguish dissent and/or opposition to its policies. The health authorities give nothing up without a fight. Every piece of information we request has to be forced out of them using the Freedom of Information Act and they use every tactic in the book to provide as little information as possible.

Advocates are virtually banished from representing senior’s issues on official committee’s or councils. Take the Premier’s Council on Aging for example. Over 60 per cent of those appointed are from the Lower Mainland, there were none appointed from the Cariboo and surprise, surprise, none of the seniors advocacy groups in the province had a member appointed to the council.

Another example occurred in our own community of Williams Lake when the labour council proposed that a Health Advisory Committee be created to receive information on health related concerns and provide recommendations to city council. I was appointed by the Labour Council as its representative on the committee and of course I was unashamedly denied a seat at the table.

Our health care system is being administered and operated based on right-wing ideology at the almost total exclusion of recognized research, evidence-based practices and sound delivery models. Until we demand that our health care system be run as a health care system and not a business and that patients be treated as patients instead of widgets we will continue to witness a deterioration of health care in B.C.

Richard Vollo

Williams Lake

–The Tribune Williams Lake Feb 28 2006

http://proquest.umi.com/pqdweb?did=996235861&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Deputy Health MinisterPenny Ballem’s report on Fanny Albo is released: http://www.health.gov.bc.ca/library/publications/year/2006/BallemReport.pdf

2006: Report says Fanny Albo did not get quality care, urges local health changes

Copyright Canadian Press Mar 1, 2006

VICTORIA (CP) – An elderly Kootenay woman who was separated from her husband of almost 70 years by health authorities did not get quality care before she died, says a report requested by B.C.’s health minister.

The report by deputy health minister Penny Ballem found health authority officials did not explore all the options available last month before moving Fanny Albo from Kootenay Boundary Hospital in Trail to a seniors facility about 90 minutes away in Grand Forks.

Days after the move, Albo, 91, died. Her family said she didn’t have a chance to kiss her husband goodbye even though he was a patient at the same Trail hospital.

After receiving the report Wednesday, Health Minister George Abbott summoned Interior Health Authority officials to a meeting Thursday to discuss its findings.

Abbott also said he called the Albo family “to apologize unreservedly.”

But he said he had no immediate plans to take disciplinary action in response to the Albo case.

Senior medical leaders in the Trail area, including the medical director for Kootenay Boundary and the medical director for Interior Health, did not participate in Ballem’s review. Ballem called this “remarkable” and said she was unsure why they were unavailable.

Murray Ramsden, CEO of the Interior Health Authority, denied the allegation Wednesday night. He said his officials co-operated and he welcomed the report.

“The recommendations are very relevant, practical and we are going to move as quickly as we can on their implementation,” Ramsden said.

He said he will be in Victoria on Thursday meet with minister.

The Interior Health Authority sent a formal letter of apology to Albo family and local officials from Trail will also be meeting with the Albo family Thursday, Ramsden said.

NDP leader Carole James was still very concerned about the allegation by the deputy minister that the health authority staff didn’t make themselves available for the review.

“That is a damning comment. That they couldn’t even get senior officials who work at that health region to meet with the deputy minister, who’s doing a report for the minister, that just points again to complete chaos and the fact that the health minister has no handle on any kind of support in our health care system, nor support for seniors,” said James.

The Opposition New Democrats continued their demands Wednesday for a broader investigation into what they say are growing numbers of instances of seniors being separated and moved to other health facilities – with equally tragic results – to ease hospital overcrowding.

Ballem’s report highlights the problems that can result in a health system when bureaucracy is put before patients, said Katrina Conroy, the NDP’s seniors critic.

“People get caught up in policies and we forget about care and compassion,” she said.

The Albo family and the health authority could not be reached for comment.

Ballem said her report makes strong recommendations, but isn’t about laying blame.

“We did not succeed in delivering quality care to Mrs. Frances Albo,” Ballem said. “We have some learnings from her.”

Albo was suffering from congestive heart failure and was nearing the end of her life, Ballem said. A move to a palliative care bed instead of a seniors facility would have been a better option.

“She was a candidate for palliative care,” Ballem said. “This was not a holistic decision that was made around that particular family.”

Ballem urged Interior Health Authorities to get more creative when making health decisions.

“If they had paused and thought more, they may have made a different decision,” she said. “This is what happened there, they got a little bit sort of paralyzed.”

Ballem said Trail has one palliative care bed, but health officials didn’t consider that bed as an option before deciding to move Albo.

Abbott said he will urge Interior Health Authorities to increase the number of palliative care beds in the Kootenays during his meeting with officials.

Among other things, Ballem recommended:

_The health authority should consider family needs and circumstances before sticking to its policy of moving patients to the first available bed.

_There should be an appeal process for families who disagree with decisions related to patient moves.

_There should be a better palliative care program in Trail.

_ There should be a pilot project in Trail modeled on health-care in the United Kingdom where the community takes a more active role in health care.

“There needs to be better engagement with the local community,” she said. “This is a community that doesn’t feel connected with the health authority.”

Ballem’s report recommends the Interior Health Authority report to the Health Ministry by March 31 with an update on the recommendations. http://proquest.umi.com/pqdweb?did=996648101&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Trail nurse resigns in protest of policies

Copyright THE DAILY BULLETIN (KIMBERLEY) March 22006)

A high-profile nurse has quit her job hoping her grievance against Interior Health will force the B.C. Nurses Union to investigate the issue of long-term care bed shuffling.

Marg Gauthier was the liaison nurse — the person in the middle between Kootenay Boundary Regional Hospital administration and the families of loved ones.

For the past two years, she said the pressure to turn over acute- care beds more quickly was increasing. The closure of respite beds at Kiro Manor and sick seniors being forced to take beds in communities miles from home became more than Gauthier could take.

“Instead of patient needs, the priority is beds,” she said. And as “beds had to be moved faster,” she felt she was being perceived as an obstruction to the process.

“(For the staff), this has caused a ton of stress, blaming and finger-pointing,” she said.

“Nurses must abide by a code of ethics and standard of practice. If I don’t feel a patient is safe outside the doors with home support and other services, I would say ‘No, they’re not leaving …’

“You know when you have a serious cold or flu, it takes a week or so to recover. But for a frail elderly person, it can take a few months, and that’s with physio, nursing, good nutrition,” she said.

For a while, those recuperating were sent to Kiro Manor.

But since Kiro closed last August, those patients have been taking up hospital beds, resulting in a daily ritual of determining who gets bumped, she said.

The stress level was starting to affect Gauthier’s health — who is well-known as the popular co-host of the local health-care charity show, The Enema Awards — and though she wasn’t planning on retiring for a few years, she made the decision to take medical leave on Jan. 3.

“I opted for early retirement because it’s unsafe for me to go back. The same policies are in place, the same administration. There’s nothing to make me safe, health-wise.”

Gauthier hopes that by going through the B.C. Nurses Union’s grievance process, the union will talk to other staff members and bring the whole issue into the open.

“The Albo family showed us the way,” she said of 91-year-old Fanny Albo, who passed away two days after being shipped from Trail to Grand Forks without a chance to say goodbye to her husband who was also in hospital.

The Albos went to the media.

“We need to protect patients and advocate for their safety. I hope this will change it.”

Would she go back?

“If things changed. I’m leaving a job I loved and people I loved to work with. It’s heartbreaking. But if we turned things around, I’d consider it.”

Gauthier wants Interior Health to put patients first.

“We need administration working with front-line workers on how to get resources and go forward in a positive way.”

IH spokesman Stephen Harris said the health authority would not comment on human resources issues. http://proquest.umi.com/pqdweb?did=997074391&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Family kicked out of dying mom’s room in B.C. hospital already in spotlight

Copyright Canadian Press Mar 12, 2006

TRAIL, B.C. (CP) – Less than a month after an ailing woman was separated from her sick husband and taken to a care home 100 kilometres away where she died, a family has been kicked out of their dying mother’s hospital room.

Last month, Fanny Albo, 91, was moved from Kootenay Boundary Regional Hospital in Trail to a home more than an hour away and given less than 10 minutes to say goodbye to her husband of almost 70 years. Alfie Albo, 96, was in the same hospital.

Fanny died Feb. 19 just days after the move. Her husband died March 2.

Patricia Halliburton, 67, suffers from cancer and is being treated in the Trail hospital.

Her family has been told she does not have many days left to live.

To their horror, last Thursday morning, the hospital staff told relatives who had gathered from Vancouver, Salmon Arm and Grand Prairie, Alta., to leave and return only during visiting hours.

John Helgren said he had taken the day off work to take his wife, Kelly, to see her mother.

But, Helgren said, even when Halliburton’s physician, Dr. Blair Stanley, intervened, the family was told to leave.

“We had no problem leaving the room and going for coffee while they were doing (nursing procedures) with the other patient in the room,” said John Helgren. “We respect the dignity of another person.”

With all the media attention focused on the Interior Health Authority as a result of the Albos’ deaths, Helgren said this shows “they haven’t made an attempt to do anything to change the way they do things.

“‘Go to hell,’ is their attitude,” he said.

Halliburton should have been in a palliative-care bed since she arrived at the hospital a week ago but one was not available, her doctor said.

Stanley said the family should have been able to be with their mother even if she was in a ward.

“There was no difficulty in the past (allowing families to be with dying patients at all hours),” said. “But there’s a feeling of so much stress, and people trying to get control of the situation.

“The in-the-trench nurses are extremely good,” he said. “This is coming from administration.”

Stanley said it’s “very upsetting” for the family.

“What happens if she expires when no one is there?”

He said there is a problem with geriatric and palliative patients at the hospital and that kicking the family out is “ridiculous (and) inhumane.”

Helgren said the situation is aggravating.

“But what about the next family, or the next?” he asked. “They better hope my mother-in-law dies between 2 and 8 (p.m.).”

Stanley sent the family to the media and a proper bed for Halliburton opened up later that day.

Interior Health Authority officials are holding meetings in Trail on Tuesday and Wednesday and are expected to face significant criticism for the Albo situation. http://proquest.umi.com/pqdweb?did=1004938601&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Hospital officials deny family’s visits curtailed

Copyright Vancouver Sun 2006)

TRAIL – The Interior Health Authority denies that nurses caring for a dying 67-year-old woman in a Trail hospital told the family they were being restricted to regular visiting hours.

“The family was never told they could not visit in the morning,” health authority spokesman Stephen Harris said Monday. “The nursing staff were quite clear that … palliative [patients] have unrestricted [visiting] unless there is a specific care need.”

Relatives of Patricia Halliburton, who is dying of cancer, had said a staff member told them Thursday morning they could only be with her during 2 p.m. to 8 p.m. visiting hours, but that changed after they called a local newspaper.

Halliburton was being treated at the Kootenay Boundary Regional Hospital in Trail — the same hospital where Fanny Albo, 91, was separated from her husband just days before her death.

Albo’s husband was at the same hospital at the time and the two were given little time to say goodbye before she was moved to a facility more than an hour away. Fanny Albo died Feb. 19; her husband Al died March 2.

On Monday, Halliburton’s daughter, Geri Stewart, said a staff member at the same hospital asked family members to leave Halliburton’s semi-private room at about 10 a.m. Thursday, because another patient in the room was to undergo a sensitive procedure and needed privacy.

Halliburton had been on a waiting list for a private palliative care room since arriving the previous Sunday, Stewart said.

Stewart said the staff member told the family that strict visiting hours were about to be enforced, and they would not be able to see Halliburton unless they came between 2 p.m. and 8 p.m.

Stewart said she told her mother’s family doctor, who called the hospital and was informed of the same visiting restrictions.

Stewart said that at the doctor’s urging, she spoke to the Trail Daily Times, and shortly returned to the hospital, where she had no problem visiting outside the earlier-stated hours.

She said her mother was moved to a private palliative care bed that afternoon, adding she believes the call to the media may have influenced those changes.

Harris said Halliburton was moved as soon as a private bed become available. “I wish I had that much power that the Trail Times could call me and I could make a palliative care bed appear out of thin air,” he said.

Halliburton was preparing to leave hospital Monday to return home. Stewart said that was because her mother has always wanted to die at home, not because of problems at the hospital.–Jonathan Fowlie Vancouver Sun March 14 2006 http://proquest.umi.com/pqdweb?did=1003996631&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Cranbrook senior dies two weeks after transfer, family questioning: IHA Under Microscope: Senior’s family wondering about IH’s first available bed policy;

Copyright NELSON DAILY NEWS March 14 2006)

In the wake of the Fanny Albo case, a Cranbrook couple is questioning the treatment their aged mother received from the Interior Health Association (IHA).

Doris Edmunds, 88, a resident of Cranbrook since 1948, passed away Feb. 2, 2006 in the Hillcrest Care Unit of the Creston Valley Hospital two weeks after she was moved there by ambulance Jan. 17 under the IHA’s first available bed policy.

Edith LeClair, Edmunds’ daughter, says she and her husband Ray reluctantly agreed to the transfer after an IHA discharge planner told the couple they had 48 hours to decide whether to agree to the Creston transfer or pay $750-a-day to have their loved one remain in the East Kootenay Regional Hospital in Cranbrook.

“So there we were between a rock and a hard place,” says Edith 57, who works outside the home, while Ray, 70, a retired telephone worker, stays in.

“We couldn’t look after her even if we had home support more than twice-a-day. Then, I thought O.K., maybe we’ll be lucky and she’ll get into Steepleview really fast. Then they called me and said a bed was available in Creston and we had 48 hours to think about it so I knew we had to take it.”

The couple were hoping Doris could get into Steepleview, the 50- bed extended care unit of the East Kootenay Regional Hospital.

That way she’d be only minutes away from their house where she had lived with them for 18 years until her arthritis and emphysema acted up so badly she was admitted to hospital just before Christmas.

“I don’t have any nurse’s training and when I would get home I’d often be up all night with her,” says Edith. “Then about four days before Christmas she went back into the hospital and around the second or the third of January I realized she’d be better off in a facility and I asked the IHA if she could be put on the waiting list.”

But the couple were told there was a two to three-month waiting period to get into Steepleview and they would have to consider other alternatives.

Nor could they get Doris into the 15-bed Steepleview Transition Unit located in the former Rocky Mountain Lodge, which now houses IHA administrative staff after the facility was closed for seniors in April 2004.

“It makes me mad that we have a transition unit here which I thought was for this type of situation. But obviously it’s not. I really don’t know what it’s for,” says Edith.

They also tried to find private care for Doris but no facility would take her because she wasn’t ambulatory. When the options ran out they told Doris she was going to be moved and she took it like a trooper, Edith says.

“Once we made the decision, I explained it to her but told her that once she was better again she could come home again. That was the only way I could explain it to her. She said I understand.”

The ambulance ride to Creston was difficult for Doris. “I think the move really knocked the wind out of her,” says Edith. During the two weeks Doris was in Hillcrest, Edith and Ray were only able to make the 106 km trip every Sunday and they could see she was slipping quickly.

“The care she got there was excellent, but the last Sunday we went we could see she had gone down more. On the first of February around midnight they called and said she was failing really fast and I said I didn’t think I could get there at that time because the roads were pretty bad, but they had someone sitting with her, one of the nurses, and then they called me back about two hours later and said she had passed away.”

Edith says she has no complaints about the care her mother received in Creston. “They were very good to her and I think she was quite happy there. But she was at a point in life where she had started to die, probably since Christmas, and that (the move) helped it along.”

Edith says she’s aware of the Fanny Albo case. “It’s terrible. They did exactly the same thing there. She should have been kept in Trail and my mother shouldn’t have been moved either.”

Ray LeClair says he feels even more strongly about the situation than his wife. “We’re at the point now where we’re trying to deal with our anger and dismay at the system because it’s not the way I would like to see it happen to me.

“I would like to have my wife with me when it comes to that time or vice versa. We all probably would. But for them, it all comes down to the dollar bill and that’s not the way it should be.”

Char Cooper, Doris Edmunds’ granddaughter, says her grandma was a fiercely independent woman most of her life. “She paid her taxes. She was a volunteer and she was a model citizen.

“She used to tell me some people had too much pride to use a walker, but it wasn’t going to hold her back from doing what she wanted. She was a giver and wanted to keep giving even after she died.

“When she died, she wanted to donate her body to research . . .We honoured her wish.” http://proquest.umi.com/pqdweb?did=1007567561&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2006: Health horror story real

Copyright NELSON DAILY NEWS March 21 2006)

To the Editor:

Some people may be tired of hearing doom and gloom stories about the Liberal government and the IHA’s poor management of our health care and long term care system, but, personally, I want everyone to hear all of the horror stories.

I am outraged that the Liberal government has cut our health care system to the bone and is spending our tax dollars preparing for their extravagant 2010 Olympic party. How many people have to die, how long do the surgery waiting lists have to get, and how many seniors have to be separated from their loved ones before there is enough public outrage to force the Liberal government to change their priorities?

Two years ago, during the closure of Willowhaven, I went through the ordeal of attempting to get my dad into a longterm care bed.

The closest available beds were Kaslo or New Denver. For several months, I lobbied Blair Suffredine to halt the closure of Willowhaven until the new facility was built and to increase the number of beds in the new facility, to no avail. I harassed the premier’s office, the IHA, wrote a letter to the editor deploring the disgraceful treatment of our seniors, and my brother harassed the health minister. To shut us up, they finally gave my dad a bed in Mt. St. Francis, where he passed away four months later.

I doubt that the situation has improved with the opening of the new facility in Nelson as we are still short the beds lost when Willowhaven was closed, and I still hear of seniors being separated from their loved ones. Plus, I have to wonder about the level of care our seniors are receiving at the new private facility when the staffing level has dropped from the old facility. The salary and working conditions appear to be such that there is a frequent help wanted ad in the newspapers. I would also like to know what happened to Mr. Colletti, a physically and mentally handicapped man who had spent 20 years safely in Mt. St. Francis, but died a few months after being transferred to the new facility.

I sincerely hope that the heartbreaking story of Fanny Albo and family is not allowed to be swept under the rug and forgotten after a few platitudes and empty promises from our government. This incident was not an isolated case as the IHA and government would like everyone to believe, it is just the tip of the iceberg and the most shocking and newsworthy occurrence.

After watching the Tommy Douglas story this past week, I am thoroughly disgusted with the direction our health care is heading both in this province and across the country. Tommy stated that the measure of a society was in how well we looked after our poorest and most frail citizens. Equal, universal access to health care, including longterm care, should be every citizen’s right.

There is no shortage of money to fund health care. Enormous amounts of money are wasted on sponsorship scandals, gun control, 2010 Olympic parties, etc. It is all a matter of priorities and ideologies. Big business see health care as a big cash cow, especially as the baby boomers age, and are pressuring our governments to relinquish control, so they can cash in. I can’t help but wonder if the long surgery waiting periods aren’t artificially managed to encourage citizens to embrace private health care. If the wait periods aren’t increasing or decreasing much, then our system must be keeping up with the necessary surgeries, and it should just take a little bit of extra effort and dollars to decrease and eventually eliminate the wait times.

It is also shocking to hear the IHA spouting off about surgery wait times. In the March 10 NDN IHA spokesperson Stephen Harris states that “We really don’t have any significant surgical wait time in the Kootenay-Boundary. General surgery, it is almost on demand — there is really no wait. If you had a hernia, you could almost get it done that day.” Well, I beg to differ, as this winter, I waited over three months for hernia surgery, and I know a co-worker that has been waiting almost two months and still doesn’t even have a date scheduled.

We need a new central hospital in the West Kootenays and we need it now. We need a health care system that is not overflowing during normal circumstances, but one that has the capacity to handle disasters, like the much predicted flu pandemic. We need long term care that looks after our seniors in a dignified manner and keeps them in their hometowns close to their loved ones. We need people to write letters, sign petitions, and harass this government to force them to fund decent health care. We need more leaders like Tommy Douglas, political leaders that are not in it for their own power, riches, and glory, but who attempt to improve our society to the best of their ability.

Verne Bystrom

Nelson, B.C. http://proquest.umi.com/pqdweb?did=1008076011&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD 

2007:IHA legal action ‘David vs. Goliath’;

Copyright 2007 The Daily News (Kamloops))

Interior Health is continuing legal action against a seniors’ care critic who secretly shot video of her dying father at Overlander Extended Care Hospital.

Publication of a seven-minute web video, taken from a camera hidden inside a teddy bear above the bed of Judy Sellin’s father, was banned by a court-ordered injunction upheld late in 2005.

Despite that successful publication ban, IHA is pursuing a two- week trial in B.C. Supreme Court in Kamloops in April next year.

“It’s David versus Goliath,” said Judy Sellin in a telephone interview from Edmonton, where she is residing temporarily to seek medical care.

“I’ve not even been able to finish paying for the plot where my father is buried or put a headstone on his grave.”

Sellin and her son, Reece, installed the camera above Stephen Piccolo’s bed at Overlander hospital. From hours of tape, they published a seven-minute video on the Internet.

A court-ordered ban sought by IHA and upheld in B.C. Supreme Court forbids publishing the video or describing its contents.

An IHA senior manager confirmed the agency is pursuing its civil action of defamation and breach of privacy against Judy and Reece Sellin.

“I think it’s (ban) only temporary, which means it can change at any time,” said Andrew Neuner, chief operating officer for the Thompson-Cariboo region of the IHA.

“It’s part of the normal process so the injunction is permanent or it gets removed.”

But Sellin’s lawyer called pursuit of his client questionable use of health-care dollars.

“If IHA didn’t do anything further, the injunction would remain indefinitely and the seven-minute video wouldn’t be published,” said Kamloops lawyer John Drayton.

Neuner said he could not estimate the health authority’s legal bills to pursue the action through a two-week trial.

“You’ve got to wonder about the financial prudence,” Drayton said, questioning Sellin’s ability to pay any damages that may be awarded.

“What more do they have to gain? What are their chances of gaining more? And what is the cost to the taxpayers of doing that?”

Drayton is representing Sellin pro bono, or without compensation.

The court ordered in December 2005 that she cannot publish any of the 240 hours of video without masking identity of employees depicted. IHA must agree the masking is sufficient.

Sellin said her advocacy for seniors and court action have taken a toll on her health. She is under treatment for a thyroid condition and high blood pressure. She is reliant on financial support of friends and family for living expenses.

Her efforts as the head of the Elderly Liberation Movement Society of B.C. (ELMS) have fallen away and she has made no effort to publish any more video.

Neuner said the decision to pursue Sellin to trial was made by IHA managers and was not reviewed by its government-appointed board.

“I’m not going to get into that discussion,” Neuner replied, when asked whether continuing legal action is wise use of health spending.

“That opens many things. It’s a legal matter. There’s due process.”

Sellin said IHA’s only offer to settle before trial was that she hand over all tapes, including originals — what she said is far beyond what the B.C. Supreme Court justice ordered.

She also said IHA refused any other settlement terms.

–Cam Fortems May 3 2007

http://proquest.umi.com/pqdweb?did=1271947341&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2007: ”Dale Cardinal says the best thing about her job as a rehab assistant at the George Pearson Centre is the residents and staff. ‘It definitely has a family atmosphere,’ says Dale, who met her husband at the centre. The biggest change she’s seen over the years is in the philosophy of care. ‘Today, you see a team approach to care, and the residents have much more say in their care than when I first started.’” [Ms. Cardinal has worked at GPC for 35 years.] Current: The Newsletter of Vancouver Coastal Health, p10 April 2007 http://www.llbc.leg.bc.ca/public/pubdocs/bcdocs/362105/2007/current_vol5_no2_apr_2007.pdf

2007: Caune still trying to get out of hospital; NV man hopes for more independent life

(Copyright North Shore News 2007)

A disabled man who was evicted from Lions Gate Hospital 16 months ago is still struggling to make his way back to the North Shore, but the outlook isn’t good.

Paul Caune, who suffers from a degenerative disease which has left him confined to a wheelchair and a ventilator, made headlines in December 2005 when he was declared a trespasser in the North Vancouver hospital’s neurology unit and forced out after a six- month stay.

Caune had moved to the hospital from a group home after a bout of pneumonia in June 2005, but by the time he had been treated, his chronic condition had worsened to the point that his old home could no longer meet his needs. After negotiating with Vancouver Coastal Health, Caune agreed to move to George Pearson Centre in south Vancouver but only if the health authority promised to find him a place on the North Shore within two years.

They agreed, but after 16 months there’s still no sign the move will happen, and Caune’s starting to wonder if they’ll beat the deadline.

“I’m so desperate to get out I’m willing to give up my dream of living on the North Shore to do so if I have to,” said Caune. “Living in this kind of setting, you can’t get the most out of life. You can’t flourish as a complete human.”

Caune feels the Pearson location on West 57th Street isolates him from his family on the North Shore and significantly curbs his freedom. While he has been moved from a group ward to a private room, he can still only shower once a week, and much of his routine is determined by the facility’s schedule.

“There’s no reason for me to be here in terms of medical necessity,” said Caune. “My health is stable. I’m up for 12 hours at a time.”

The 39-year-old, who only needs help getting out of bed, showering, and very occasionally with his breathing — feels the facility is really designed for people whose condition is much more advanced.

“My ward basically is a palliative care unit,” said Caune.

With the help of VCH, Caune has been searching for a place where he could live more independently. So far he has had no luck.

A suitable space opened at his old group home last year, but Caune’s application was turned down when the residents — who have significant input into the selection process — said he had hurt their feelings when he had lived there.

His application to the facility’s West Vancouver counterpart was rejected because the residents felt Caune’s ventilator dependence, and the associated round-the-clock attention, would be disruptive.

Caune, who disagrees with that assessment, has since filed a human rights complaint against the organization that runs the homes.

VCH has now agreed to place Caune in a private apartment on the North Shore, but so far that’s not going well either.

“My understanding is there’s a shortage of subsidized housing on the North Shore, and there is great demand,” he said. “I’m not confident that will happen.”

If nothing comes available on this side of the inlet, Caune would be willing to move to a private apartment in Vancouver — not ideal, but still a marked improvement, he said.

Vancouver Coastal Health confirmed it’s looking for a private residence for Caune, but couldn’t say how long it would take.

“It’s a new step. We’re just looking right now,” said Viviana Zanocco, a spokeswoman for the authority. “It’s too early to guess.”

While VCH would like to see Caune in a more independent living situation closer to the North Shore, his particular requirements narrow the pool, slowing the search process.

“It needs to be a unit that’s wheelchair accessible,” said Zanocco. “So that’s a bit more specialized.”

Despite the setbacks, Caune maintains hope.

“Eventually something is going to come available. . . . I’m just going to keep fishing, applying to every place I can find,” he said. “I won’t stop.” –James Weldon North Shore News May 20 2007 http://proquest.umi.com/pqdweb?did=1277788761&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

2007: “There is no recognition provincially or regionally of the key role that rehabilitation plays in the care of the elderly or those with chronic disease”(p2); “Rehabilitation services are currently delivered through a fragmented patchwork and access is often based on third party funding and or geography”(p2); “Access to service is frequently dependent on ability to pay” (p5); “There are no incentives for private practitioners to provide rehabilitation to the most complex and challenging rehabilitation patients (those with spinal cord injury, stroke, traumatic brain injury, multiple sclerosis [of those who get MS in Canada a disproportionate amount are female], and complex trauma”(p5); “Very few hospitals now provide outpatient rehabilitation services”(p5) even though “Rehabilitation services are cost effective because they reduce care needs, promote the return to employment and reduce secondary complications that lead to increased care costs and health expenditures.”(p4) –from the Physician Working Group on Rehabilitation Services submission to the government of B.C. on July 13, 2007  http://www.llbc.leg.bc.ca/public/pubdocs/bcdocs/437439/rehab_services_in_bc.pdf

2007: http://downtowneastsideenquirer.blogspot.com/2007/11/united-way-implicated-in-political.html

2007: Advocates of patients who died needlessly call for overhaul

Thursday, December 20, 2007

CBC News

A B.C. woman whose husband died in hospital after errors were made wants the Campbell government to change the law to make the medical system pay for its mistakes

“They should pay somehow,” Bonnie Ryde said. “Why shouldn’t they be responsible for what they’ve put us through?”

The B.C. law dealing with wrongful death, which hasn’t been amended since 1846, only allows compensation for lost income. While the provincial government has said it is working on changing the law, critics say they fear new legislation won’t go far enough to allow proper redress for serious medical mistakes.

Ryde’s husband, Al, died at age 66 in August 2006 in the hospital in Vanderhoof, B.C.

He was admitted because of a heart attack and was supposed to be transferred for cardiac care to Vancouver more than 850 kilometres away. Instead, he died 11 days later of a second heart attack while still waiting to be transferred out.

“I want the doctors exposed. I want the hospital exposed. I want the lab exposed,” said Ryde.

The Northern Health Authority (NHA) later apologized for a “significant error” made in a hemoglobin test, which led doctors to incorrectly reduce Ryde’s blood thinner medication. The NHA admitted that error might have contributed to his death.

“Please accept our sincere condolences on the loss of your husband and our apology for the identified error in the care provided to him,” the NHA wrote to Bonnie Ryde.

The College of Physicians and Surgeons of B.C. concluded the overall risk to Ryde’s life “was underestimated” by hospital staff and “not communicated” to specialists in Vancouver.

“The hospitalization in Vanderhoof … lacked an end point in treatment, and did not have the appearance of continued patient advocacy for transfer and appropriate investigation,” the college’s quality of medical performance committee wrote.

Throughout the 11 days in hospital, the family suspected his condition was grave and urged doctors to get him transferred to a larger centre immediately, Ryde said. She was told by doctors not to drive her husband to another hospital herself because he might not survive the trip, she said.

“I had to keep him in [the Vanderhoof hospital] to try to get him transferred out to where he could get care,” Ryde said. “I was fighting them. My daughter was fighting them. She’s a registered nurse.”

No legal recourse despite mistakes

Ryde is now raising the couple’s 10-year-old adopted son Joel alone and is having serious financial difficulties because of debts and the loss of her husband’s income from his part-time work as a miner.

Ryde was astounded when, despite the medical mistake, lawyers refused to take on a lawsuit against the hospital. She was told that under B.C. law, Al’s life was essentially worth nothing.

“Because they can’t say how much longer he would have worked or even if he would still be working at all, then he’s worthless,” said Ryde. “He wasn’t worthless to this community. He wasn’t worthless to his children. There are 10 children who relied on him and 17 grandchildren — and he loved and adored every single one.”

B.C.’s Family Compensation Act was modelled after British law. It allows the courts to compensate for lost income, but only if the deceased was a wage earner who was expected to continue earning income for some time. When older patients or children die needlessly, their families almost always have very little recourse to civil court redress.

“You can kill people pretty much with impunity and there are no civil consequences,” said Donald Renaud, a Vancouver-area lawyer who started the Wrongful Death Reform Group in B.C.

“It’s cheaper to kill than it is to injure, there is no question,” he said.

Lobby groups want law made tougher

Renaud said he founded the lobby group to try to convince the Campbell government the law needs to be changed after he grew tired of having to tell angry, grieving clients that he can’t help them.

“The public has no idea that the state of the law is this poor,” Renaud said. “When somebody comes to me, I want to be able to do my job — and I can’t because there are no damages that I can pursue.”

B.C. Attorney General Wally Oppal said he agrees that potential financial awards should be higher, and a change is long overdue.

“We’ll do whatever it takes to fix the law,” Oppal said. 

B.C. has just finished a consultation process and Oppal said he expects to introduce draft legislation soon.

“We want to make sure that the change is made for the best interests of everyone involved.”

The Canadian Institute for Health Information recently estimated 24,000 Canadians die as a result of medical errors each year, making it one of the leading causes of death.

Applies to other types of deaths

The same lack of compensation applies to any type of wrongful death in B.C.

The Coalition Against No-Fault in B.C. (CANF), another group pushing for change, has pointed out that, if the O.J. Simpson case happened in Canada, the victim’s families would have had no recourse.

“The [Ronald] Goldman family would have had no access to justice against O.J. Simpson, by way of civil action, had the murder of their son taken place in B.C. rather than California,” CANF wrote in a brief to the office of the Attorney General.

Oppal said when the new law is drafted, the position of the insurance industry must also be taken into account.

“You know, there are a lot of people involved,” Oppal said. “If we simply leave it up to the juries [to decide amounts to be awarded], what about the people who pay the damages? The insurance companies, they have a viable interest in this.”

Because the insurance industry is a powerful lobby group, Renaud and others who have lobbied for change fear the law may get minor “tweaking” instead of a major overhaul. Other provinces that updated their laws only made small changes, Renaud said.

“It’s the public on the one hand and it’s these special interests on the other hand,” said Renaud.

The B.C. Coalition of People with Disabilities also would like to see the law changed because many people with disabilities cannot work, and therefore cannot sue for medical mistakes.

“Many provinces have amended the laws,” the coalition wrote in another report to government, “though none has done so sufficiently to provide proper or fair compensation for all people impacted by the death of a loved one.”

Five provinces — Alberta, Manitoba, Saskatchewan, New Brunswick and Nova Scotia — have amended their laws to allow claims for grief and lost care and companionship. Alberta’s new law is the most generous, allowing automatic payments to spouses of $75,000, plus $45,000 for each child.

Oppal said the new law will not be retroactive, so it won’t be used by Bonnie Ryde, who still can’t talk about her husband’s death without breaking down.

“He believed in this country. He never missed a day of work in his life. The way he saw it, his job was to pay his taxes and take care of his family,” she said, wiping away tears. “He was just the grace in my life. He was everything to [his son] Joel.”

Ryde is currently preparing for bankruptcy court, where she expects to have to fight to keep the home she shared with her husband for decades. She said she plans to represent herself in court.

“I don’t even have a lawyer anymore because they want more money,” Ryde said. “I have no more money to give.”  http://www.cbc.ca/canada/british-columbia/story/2007/12/19/bc-wrongfuldeath.html

2007: http://www.health.gov.bc.ca/library/publications/year/2007/conversation_on_health/PartI/PartI_PeopleWithDisabilities.pdf

2008: Man gets 18 months for sexual assault

Copyright Southam Publications Inc. Feb 3, 2010

A former security guard at Lions Gate Hospital who sexually assaulted a patient with severe physical disabilities and mental health problems was handed an 18-month sentence Tuesday by a B.C. Supreme Court judge.

Justice Derek Rice handed the sentence to John Jugovic, 30, Monday afternoon after Jugovic pleaded guilty to sexual assault.

Crown counsel Emmet Duncan described how Jugovic attacked the victim, a small, frail woman in her 40s, in her own North Vancouver apartment after following her home on foot from the hospital on Jan. 4, 2008.

On that afternoon, the woman left the hospital and was heading home for the weekend after receiving some ongoing medical treatment when she noticed Jugovic, dressed in his security guard’s uniform, running behind her, said Duncan.

When she entered her apartment lobby, she noticed Jugovic had slipped in behind her, but thought nothing of it, because she knew a number of people who worked at the hospital lived in the building, said Duncan.

She didn’t notice Jugovic again until she had unlocked her apartment door and “she felt a shove on her back,” said Duncan. “She fell to the ground.”

The next thing she knew, the woman was lying naked and pinned to her own bed by Jugovic, who was also naked and had pried her legs open.

He attempted unsuccessfully to have sexual intercourse, and then digitally penetrated her several times.

The woman cried and told Jugovic “stop” and “please don’t,” during the assault, said Duncan, before she entered a disassociative state in response to the attack, essentially making her unaware of what was going on around her.

When the victim returned to full consciousness, she was bleeding and Jugovic was gone, said Duncan. She spent the weekend in a state of dazed shock in her apartment and only reported the attack to a nurse when she returned to the hospital for treatment two days later.

A doctor who examined the woman later described serious genital injuries unlikely with consensual sex.

Jugovic was arrested the following day.

He admitted to having sex with the woman, but insisted it was a consensual sexual encounter. Later, said Duncan, he admitted he knew there was something “not right” with the victim and that he had taken advantage of her.

Duncan said the fact the victim had obvious physical disabilities and that Jugovic was wearing a Paladin security uniform were both aggravating factors in the case.

He added the woman had already been the victim of several other sexual assaults in her life.

Defence lawyer Ed Cooper offered little explanation for the attack except that Jugovic was under stress and looking for companionship at the time. He said the sexual assault was not premeditated and that Jugovic has no criminal record.

Jugovic, a married father of two, stood in court and apologized for his actions prior to being sentenced. “I apologize to the whole community,” he said. “What I did, my actions, it’s wrong. It’s not right.”

“What occurred . . . truthfully it’s like a once in a lifetime occurrence,” he said. “It’s like getting struck by lightning.” He added if he was in the victim’s shoes, “I would be really devastated.”

In addition to the jail term, Rice placed Jugovic on three years probation and ordered that he give a DNA sample and take sex offender treatment. His name will also be entered on the sex offender registry for 20 years.

He must also stay at least three blocks away from Lions Gate Hospital.

–Jane Seyd, North Shore News

2008: The head of the Lions Gate Hospital says a spate of published complaints from patients — including a 2 a.m. release of an elderly woman — are overblown accounts of isolated incidents made worse by ongoing renovations.

But Mary Ackenhusen, the chief operating officer with responsibility for the North Vancouver hospital, said the hospital will hire more staff and implement a more efficient system of filling beds.

“We have great staff and they’re doing an extraordinary job under challenging circumstances,” said Ackenhusen, noting the emergency department is six months into an 18-month renovation.

“Renovations create the perception that things aren’t as smooth as they want them to be,” she said.

The congestion was worsened by an ongoing staff shortage and a highly contagious Norwalk virus outbreak that forced the closure of more beds, she said.

In recent letters to the North Shore News, patients and their friends or families wrote of long waits in the ER, dirty washrooms and furniture and described incidents in which an elderly woman without her purse was denied the use of a phone to call family to pick her up and one in which a teen screamed for half an hour until he was admitted.

“It’s easy to read [the letters] and jump to conclusions,” Ackenhusen said. “When we investigate these events, it’s not necessarily how they were perceived by staff. And we have lots of positive letters.”

The paper also printed letters recounting friendly, supportive staff and pleasant and positive experiences.

But one complaint recounted how an 87-year-old woman, who arrived by ambulance with stomach pains at 6 p.m., waited until 11 p.m. to be examined. It was midnight before she received any food or drink, despite being a diabetic and suffering low blood sugar, according to her friend, Pat Lund.

Lund said the woman was given tests before being told at 2 a.m. that she had been discharged and had to leave immediately. The elderly woman, wearing the slippers and housecoat she had arrived in, had to call her own cab, she said.

Doris Orr, 86, who went to emergency with a bad headache two weeks before her scheduled brain surgery, said she left after waiting in a cold and draughty waiting room from 10 a.m. until midnight.

She said she watched a teenage boy lie on the floor and scream “help me” for 30 minutes. “It’s complete chaos in there,” she said. “You can’t imagine it if you haven’t seen it.”

She said she made a complaint to a kind and understanding staffer, but the written response from an administrator angered her.

“He said everything is under control,” she said. “I don’t know if he’s ever been in an emergency room in his life.”

Ackenhusen wouldn’t discuss individual cases or say if any staff were disciplined but said meetings were held about staff concerns.

“You can say it’s an internal matter and the COO takes responsibility for the actions of the staff and has taken the necessary action to make sure it doesn’t happen again,” she said.

Ackenhusen also said the hospital has made a “complaints and kudos” form in the ER more visible and posted job openings for more staff. Next month, it will adopt a more efficient way of handling patients that includes daily meetings with hospital staff and other involved staff, such as social workers, to make better use of the beds, she said. slazaruk@png.canwest.como Vancouver Province Jan 27/2008

© (c) CanWest MediaWorks Publications Inc.

http://www.canada.com/story_print.html?id=36c9d8c6-5964-4605-a022-ee2b1bef16e8&sponsor=

2008: “Residents [of George Pearson Centre] under­stood the need for a routine within GPC but many criticized the inflexibility of it. Residents consistently gave three examples in which the routine challenged the reality of GPC as home: being able to have a bath or shower more than once a week; being able to go back to bed for a rest and then get up again during the day; and having to remain in bed on days when they were to have a bowel routine. Residents wanted a greater degree of control over these aspects of their lives. They described these three things as being pretty basic and that they were really about having some control over your own life. They believed that it was not unreasonable to want to have a shower more than once a week, or if they were feeling like it, to go back to bed for a rest and to then get up again… Some residents did not feel able, physically or emotionally, to challenge staff to try and change things. They did not want to upset the status quo. A number of residents commented it was the ‘squeaky wheel gets the grease’ by which they meant it was the most vocal residents who had their needs or issues ad­dressed. Residents also discussed their fear of negative conse­quences if they complained too much or made a fuss.” –Envisioning Home: Participatory Action Research with George Pearson Residents by Community and Mentors Association (CARMA) [&] Pearson Residents Council 2008 [p12-13] http://www.bccpd.bc.ca/docs/envisionhome.pdf [based on interviews with 46 of 120 GPC residents.]

2008: Families worried about patients’ move to Surrey

(Copyright (c) 2008 Black Press Group Ltd.)

The family of a man living at Eagle Ridge Manor in Port Moody is upset that Fraser Health is planning to move him, and other ventilator-dependant patients, to a new facility [the CareLife Fleetwood facility] in Surrey.

Howard Bartel said he won’t be able to visit his father as often and his mother will have to arrange rides to Surrey to see her husband, and they want to know why he can’t be given the option to stay where he is for whatever time he has left.

Frank Bartel, 77, was diagnosed with ALS, also known as Lou Gehrig’s disease, six years ago; in May 2006, he was moved to Eagle Ridge Manor. He now has limited movement of his head and shoulders, and his speech is beginning to deteriorate.

Howard Bartel lives in Maple Ridge and works in Vancouver, so he often takes the West Coast Express to Port Moody in order to see his dad on the way home. His mother, 75-year-old Mary Bartel, also lives in Maple Ridge and sees her husband of 43 years as much as possible but, because she can no longer drive, has friends take her to Port Moody regularly.

Arranging rides to Surrey would be much more difficult, Howard Bartel said, and transit isn’t an option for his mom. “She’s really upset about it,” he added. “She’s hoping somehow he can stay where he is.”

They’re not the only ones concerned about the planned move this fall. According to Howard Bartel, a woman whose husband is on a ventilator because of multiple sclerosis bought a home in Port Moody less than a year ago to be closer to him.

“Pretty much everybody affected by the proposed move would prefer to stay at Eagle Ridge,” he added.

Fraser Health spokesperson Michael Bernard said that while the health authority sympathizes with the patients and their families, the move will give them the best care possible . The health authority has created a centre of excellence for ventilator-dependant patient care in Surrey modelled after the George Pearson Centre in Vancouver, and will bring together 12 patients in care homes throughout Fraser Health.

Leaving those patients who wish to stay at their current care homes isn’t an option, Bernard said, because all of the speciality staff, including doctors, nurses and care aides, are also moving to Surrey.

“Our goal is to make the move the least traumatic and most comfortable possible but we need to be able to organize our services in a way that’s going to deliver the best care possible to our patients,” Bernard said. “And this is a longer-term plan.” –Sarah Payne The Tri-City News July 17 2008

http://proquest.umi.com/pqdweb?did=1513310991&sid=3&Fmt=3&clientId=58962&RQT=309&VName=PQD

2008: “Portability of benefits is seen as an area for significant change. It is not possible at present to transfer support hours from one HA to another. A decision to relocate entails terminating an existing agreement and being reassessed in the new HA with uncertain results. CSIL clients envision a seamless program where geographic transitions do not entail anxiety regarding the availability of the program, reapplication to the program or reapproval of hours.

Independent appeal processes, which might mitigate some of these matters, require development in the view of CSIL clients. CSIL clients note they are sometimes told there is no appeal process related to funding or other decisions or, if there is a process, it varies geographically. Appeals are also an internal process rather than one carried out by an independent third party.” –Choice for Independent Living (CSIL) Program Review, Nov 2008, BC Government http://www.health.gov.bc.ca/library/publications/year/2008/CSIL_Review_2008.pdf

2008: During the discovery process of the Woodlands suit the Government of BC tried to prevent the disclosure of approx a million pages of Woodlands documents because, among other reasons, ” The defendant [the BC gov] refuses to produce documents…regarding sterilization issues on the ground there is no evidence sterilization was conducted at Woodlands.

I [Madame Justive Satanove] disagree with [the BC gov] that there is no evidence regarding sterilization. At p22 of the McCallum report, it states:

There is some documentation the use of admissions to Woodlands as a means by which families and family doctors relied on the facility for a person to be sterilized.

Again, at p20 of the report of the PGT, sterilization is listed as one of the issues of concern that appeared in the review of the residents’ files.

[The BC gov] may deny that sterilization ever took place in fact, but under the circumstances the plaintiff [a former Woodlands resident] is entitled to test this fact. Therefore the order for production of documents…will include documents referring to sterilization.”

Madame Justice Satanove, William Joseph Richard and W. H. M v. Her Majesty the Queen in the Right of the Province of BC, p2 http://www.kleinlyons.com/class/woodlands/decision_notice_08.pdf

2009: Hospital’s mental health facility could use support

Copyright Southam Publications Inc. Feb 13, 2009

Dear Editor:

James Weldon’s story Summit Calls for Low Level Road (North Shore News, Feb. 4) summarized the results of the North Shore Economic Summit that took place on Jan. 30. The summit was sponsored by the North Shore Chamber of Commerce. Interested groups from the North Shore presented their ideas as to the most beneficial ways that the federal government’s stimulus monies could be spent on the North Shore.

The article reported the three top priorities were the lower level road, railway access from the Iron Worker’s Memorial Second Narrows Crossing and a new film centre at Capilano University. Other priorities, put forward but not approved, were then listed.

I know that a proposal was presented for the upgrading of the antiquated mental health facility at Lions Gate Hospital. Not only was this proposal not approved by the delegates (I understand that transportation issues may take top priority, but surely mental health comes before a new film centre?), but your reporter did not even mention in his article that this proposal had been put forward.

The psychiatric in-patient unit at Lions Gate is housed in the original 1929 hospital facility. The infrastructure is crumbling. Some floors have been deemed uninhabitable. The walls leak and harbour mould. There is no privacy for patients. This facility’s replacement has been identified as a top priority by Vancouver Coastal Health. Surely we should endeavour to capture some of the federal dollars available to improve this facility. Nearly 8,000 people on the North Shore have severe addiction and mental health issues.

Deb Berto

North Vancouver

http://proquest.umi.com/pqdweb?did=1645823261&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2009: North Shore needs a new psychiatric inpatient unit

Copyright Southam Publications Inc. Mar 4, 2009

Dear Editor:

We greatly appreciated the comments made by Deb Berto (North Shore News, Feb. 13) and Margaret R. Dean (North Shore News, Feb. 22) with regards to the need to replace the Psychiatric Inpatient unit at Lions Gate Hospital. Despite recent work done to improve the inpatient unit, the building, which has served the North Shore since 1929, is not appropriate for patient care and faces many ongoing maintenance issues.

An external review of psychiatric services provided on the North Shore identified many strengths. They ranged from a skilled and dedicated multidisciplinary staff, excellent outpatient services (at CPS, ATS and the Bridge program), Magnolia House and addiction services. The one most glaring deficit in the continuum of patient care was the psychiatric inpatient facility.

The fact that the North Shore Economic Summit did not identify replacement of the Psychiatric Impatient unit as something that would benefit the local economy is short-sighted. Many psychiatric illness typically first emerge in individuals in their late teens to early 30s (the time when most are embarking into career training and career development). Aggressive and comprehensive treatment from inpatient to outpatient care will ensure that these people have the best possible prognosis, long term. Better care means these people remain well and maintain a good level of function and can go forward to live healthy productive lives in our community.

The replacement of the Psychiatric Inpatient unit has been identified as a top priority by Vancouver Coastal Health and a proposal has gone forward to garner support from the provincial government to proceed with the project. As a community we need to rally together to help advocate for new facilities to help better improve the overall outcome of people suffering from psychiatric illness.

Dr. Allan Burgmann MD, medical director, Acute Psychiatry,

Monica McAlduff, manager, Acute Psychiatric Services,

Lions Gate Hospital

http://proquest.umi.com/pqdweb?did=1656888611&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2009: Sleeping disabled man robbed; Stolen from resident’s room in George Pearson Centre

Copyright CanWest Digital Media Mar 17, 2009

A quadriplegic man had a valuable First Nations mask stolen from above his bed while he slept in George Pearson Centre.

Norman Ryall, 52, who has lived at Pearson for 30 years after becoming a quadriplegic at the age of two, treasured the mask because it was carved by Ryall’s “good friend,” the celebrated Haida artist Don Yeomans.

Ryall, who speaks with considerable difficulty through a breathing tube, is asking the public’s help in getting the mask back.

Carved in alder, the 22 centimetre by 13 cm by 9 cm mask, which was stolen the night of

Feb. 28, depicts a killer whale and was purchased for $10,000 two years ago.

“We know it’s out there — it’s been seen,” said Vancouver police Const. Tracey Prentice.

“We got information that it was being offered for sale on the Downtown Eastside for $1,600, considerably less than it’s worth,”

The tipster told police that he recognized the mask as a signed Don Yeomans piece, worth a great deal more money.

Prentice said police hope the publicity given to the theft will make the mask impossible to fence, or resell.

Ryall said the mask is “ceremonial . . . and would be worn at a potlatch or danced” and he especially treasures the piece, because he attended Yeomans’ opening at the Douglas Reynolds Gallery on Oct. 13, 2007, and spoke to Yeomans before buying the piece.

“That’s why I’m kind of partial to it,” said Ryall.

He was upset that, while he was sleeping, someone entered his room, which he shares with other residents, and lifted the mask from his personal collection of “Coast Salish, Haida, northwest coast” art.

“You don’t think somebody is going to steal something right off your wall,” said Ryall.

John Calhoun of the Douglas Reynolds Gallery said Ryall is a respected buyer, “who has been collecting from the gallery for a number of years.”

“It’s probably appreciated by 10 per cent or more, so whomever offered it for $1,600 may be just an opportunistic thief,” said Calhoun, noting that Yeomans works from a Cloverdale studio but has infrequent major art shows.

Coastal Health Authority spokesman Gavin Wilson said the centre, which is home to people with severe disabilities, may have had “petty thefts” over the years, but nothing of this scale [As anyone who has lived or worked at GPC knows this statement is bs; both staff and residents have property stolen from them frequently; during my 21 month stay at GPC I was repeatedly warned by staff not to leave anything valuable in my room; on the same ward as Ryall a woman who can only move her eyelids has had two Ipods stolen from her, her husband has chained the third one to her dresser; I know one resident who had $500 stolen from her but was too scared to complain about it; I know yet another resident who had money, chocolate and CDs stolen from his wheel-chair back-pack], and he admits “we’ll have to be a little more vigilant.”

“We’re certainly going to review policies and procedures,” Wilson said.

Vancouver police spokeswoman Const. Jana McGuinness noted Ryall leads a confined life and that collecting art is one of his passions, saying “it’s pretty low” to steal from a disabled man’s room.

Yeomans, whose father is Haida and his mother Metis, works in the distinctive Haida style, but the mask is carved in a contemporary manner with a stylized design of an orca with a human face in its blowhole. –Suzanne Fournier Vancouver Sun Mar 17, 2009 http://proquest.umi.com/pqdweb?did=1664190501&sid=4&Fmt=3&clientId=58962&RQT=309&VName=PQD

2009: A place of healing in dire need of help; Neglect takes a toll on LGH’s psych ward

Copyright Southam Publications Inc. May 24, 2009

“I have been to lots of psychiatric centres in Canada. Lions Gate is the worst.”

Iraj Roudiani is speaking to other bipolar patients during a recent weekly group therapy session at Lions Gate Hospital. The patients

are sharing their experiences on A2, the hospital’s psychiatric ward. Their assessment is damning.

“There were rats and mice.”

“There were cockroaches in the shower.”

“We all had to share one toilet, one shower, about 15 women.”

“We ran out of hot water.”

“I had lice in my hair after my stay in the seclusion room.”

“It smelled like urine.”

“The heat went off in the winter.”

While Lions Gate Hospital and its psychiatric staff are widely praised for the quality of care they provide, the physical environment in the aging A2 ward has been the subject of growing criticism in recent years. Patients, doctors, hospital administrators and health authorities say the site is in desperate need of replacement, but it is unclear when — or if — help will arrive.

The four-story building, situated to the east of the current hospital on 13th Street in North Vancouver, is actually the original North Vancouver General Hospital, which opened its doors May 29, 1929.

Administrators say the structure is beset by age-related issues, including inadequate mechanical and electrical systems, infestations of insects and rodents, and water leaks that create ideal conditions for mold.

Such health hazards have rendered the entire fourth floor and part of the third uninhabitable; indeed, the musty, moldy smell in those areas was overpowering during a recent tour of the site.

The ward’s decay stands in stark contrast to what many regard as the excellent psychiatric care at Lions Gate. The institution recently attracted the very highly regarded Dr. Allan Burgmann to run the inpatient program. Burgmann, who was at St. Paul’s Hospital in Vancouver for ten years before his appointment, is proud of the program’s achievements.

“There are no psychiatric services downtown that are comparable to what is at Lions Gate,” he said.

For the past two years, Vancouver Coastal Health, the authority in charge of Lions Gate and numerous other Lower Mainland facilities, has ranked the replacement of the psychiatric ward as one of its five most important projects.

The impact the unit has on the larger community is significant, if largely unseen, according to Burgmann. It has been estimated that approximately 7,700 people on the North Shore have severe addiction and mental health issues; 35 per cent of people visiting their family doctors suffer from some form of mental illness, according to a recent Alberta study. Experts at Lions Gate said there is no reason to believe B.C. is any different.

“(It’s) a pretty pervasive condition,” said Burgmann. No one can say they have not had either a direct or indirect experience with someone with mental illness.”

Lions Gate Hospital deals with patients suffering from schizophrenia, bipolar issues, major depression, borderline personality disorders and anxiety related afflictions in addition to others. These conditions are often complicated by drug and alcohol abuse, suicidal tendencies and eating disorders.

He said psychiatric sickness can be nasty because it is invisible: “It is not like someone is bleeding or has a severed leg. They can be tortured with chronic voices or thoughts of killing themselves and feeling like they are not worth anything.”

VCH has communicated the severity of the situation to the provincial government, but so far the funding has not arrived.

“It is disheartening in a building like this,” said Burgmann. “People with psychiatric problems already have low self-esteem, and having a bleak environment certainly doesn’t help.”

Dr. Paul Termansen, clinical director of the hospital’s community psychiatric services, agreed with that assessment.

“A big priority would be a new inpatient facility. God knows we need it,” he said. “The inpatient unit is a crucial centrepiece to any mental health service because patients often end up there during the worst phase of their illness. How they respond to that treatment affects their overall recovery.”

Termansen said that Lions Gate needs to bring its mental health services into the 21st century: “We have been lacking in inpatient facilities since I came here over 30 years ago. A new facility has been promised many times.”

The psychiatric unit has been compared to One Flew Over the Cuckoos’ Nest, the 1975 movie in which Jack Nicholson plays the inpatient in a mental institution.

“It is similar to a 1920s style hospital,” said Bergman. “The layout and conditions are not up to today’s standards. Here there are nooks and crannies and it is difficult to keep an eye on everyone.”

Today medical experts prefer a set up where nurses have a 360 degree view of the ward, with individual patient rooms circling the nurses’ station.

The Lions Gate ward also offers poor sleeping conditions. With up to five beds per room, patients can be kept up by noisy roommates. The clanging of antiquated pipes and temperatures that are either too hot or too cold add to the problem. Burgmann said this seriously delays recovery.

The two seclusion rooms in the pyschiatric unit are also inadequate by today’s standards, he said. Modern facilities require a self-contained toilet and sink and a mattress that sits on a concrete pedestal. The seclusion rooms at Lions Gate have mattresses on the floor and disposal urinals or bedpans.

The physical environment, however, is where the comparison to One Flew Over the Cuckoo’s Nest ends. By all accounts, you will not find a Nurse Ratched on A2. The people in the support group spoke highly of the Lions Gate staff, and acknowledged they were overworked.

“Here we have a team approach and that is a much different mentality than in the Cuckoo’s Nest,” said Burgmann. “It is a multidisciplinary team of nurses, social workers, occupational therapists and physicians.”

Participants in the Thursday afternoon bipolar group therapy session said the program, and clinical director Termansen, have been vital to their stability.

“I would be misdiagnosed without him. He is a great man. I do not know any doctor who is as involved as he is,” said Michael Haskins. Termansen diagnosed Haskins, 38, as bipolar in 2005. He had been self-medicating with drugs and alcohol for years. Today

he works part time as a gardener.

Mary Jane Moore said, “That man is dedicated to us. I trust that man with my life. He deserves a fabulous place to work.” Moore, 49, has been able to return to work as a teacher with Termansen’s help.

However, the working conditions on the ward have taken their toll. In March of 2007, the head of the department, Dr. Werner Pankratz, resigned for a number of reasons, including under-funding and deteriorating conditions. His staff supported his decision unanimously.

The next month, the union quashed a patient’s attempt to paint the “disgusting” and bug ridden women’s bathroom in the psychiatric ward.

Burgmann arrived at Lions Gate seven months after Pankratz left. He took the job, he said, because it was an opportunity to redevelop the unit.

“The department was going through a lot of transitions,” he said. “It was in a fairly tenuous state with regards to resignations of people and needing critical staff.”

But while the services might be in order, it will take a lot more to change the environment. Replacing the ward will take money. A lot of it.

It has been estimated that a new inpatient facility at LGH would cost approximately $44 million. VCH has received no financial commitment from the provincial government for this project.

Ministry of Health spokesperson Michelle Stewart, contacted by the News, acknowledged that “there is concern about the LGH mental health unit,” but offered little to suggest whether or not money might be on the way.

“Large-scale capital projects take time to appropriately research and plan,” she said. “The government must take into account the current economic situation, its ongoing capital commitments and all other provincial capital funding requests.”

With little sign of provincial funding on the horizon, advocates are beginning to look to the community for help.

Judy Savage, president of the Lions Gate Hospital Foundation, said the organization is considering a campaign for a new psychiatric

inpatient unit. They work with the Vancouver Coastal Health (VCH) in identifying fundraising goals.

“If the Lions Gate Hospital Foundation could raise $15-$20 million, it would go a long way towards the construction of a new building,” said Termansen.

Over the last seven years, the foundation has raised about $60 million dollars for new equipment and major projects, such as new emergency and ultrasound departments.

St. Paul’s Hospital serves the entire province and has a much larger mandate than Lions Gate. Its foundation raises about $10 million annually which is somewhat more than what the Lions Gate Foundation raises.

St. Paul’s Hospital takes patients from across the province and it “is in a class with Vancouver General and Children’s Hospitals. All three hospitals have been able to attract significant funds over the last few years because of the research and teaching mandate,” said Stephen Shapiro, president and CEO of the St. Paul’s Hospital Foundation.

Burnaby Hospital is also a community hospital and serves the same size population as Lions Gate, around 200,000 people. The Burnaby Hospital Foundation raises less than half of what the Lions Gate Hospital Foundation does.

In fact, the local hospital foundation has been criticized for letting the government off the hook by raising large sums of money from an affluent donor base.

“But our philosophy is, we will take what the government gives us, which is a Chevy model, and turn it into a Cadillac,” said Savage. For example, if there is government funding for a basic piece of equipment, the foundation will raise money for the most advanced one available.

“Just because we have an affluent community, it doesn’t mean we don’t have to work hard,” said Savage.

If Burgmann gets his wish, Lions Gate Hospital will one day also be a research and teaching centre.

“It is necessary to have the physical facilities in order to do the teaching, the clinical work and the research,” he said. “Having the research would make this department the centre of excellence that it should be. Everything is here to do that. But all that would hinge on getting a new inpatient facility.”

–North Shore News http://proquest.umi.com/pqdweb?did=1729577941&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2009:  a glimpse of the real-life of voters with disabilities circa 2007-2009 http://vimeo.com/5820751

2009: Top former CGA official expelled

Copyright CanWest Digital Media Sep 11, 2009

A North Vancouver certified general accountant who received the highest awards his professional organization can bestow on its members has been banned for life after abusing the trust accounts of five mentally incompetent clients.

The Certified General Accountants Association of B.C. said in a release on Thursday that Laurie Dye, a partner with Kemp Harvey Dye Inc. of North Vancouver, was expelled from the association earlier this week.

The association said a B.C. Supreme Court judge appointed Dye to administer the cases of five adults who were incapable of looking after their own affairs and were wards of the Public Guardian and Trustee of B.C.

The association said Dye breached its ethical principles and rules by taking money from his clients’ trust accounts and lending it to his public practice. Furthermore, he loaned that money at below-market rates.

He also paid himself fees in advance without the approval of the Public Guardian’s office, failed to provide an accounting of trust funds, and did not respond to the association’s inquiries, the association said.

Dye was one of the province’s most decorated CGAs. In July 1999, he was named a fellow of the CGA Association of Canada. And in October 2005, he was made a life member of the B.C. association for “meritorious service” to the profession.

Dye obtained his CGA designation in 1972 and was named the first CGA-BC valedictorian. Among many other positions, he served for three years on the B.C. association’s board of governors from 1975 to 1978, and as a member of its ethics committee from 1987 to 2007.

Dye’s expulsion is the second such banishment of a former high-ranking CGA official in recent years.

In January 2006, Jo Coffey, who also served on the B.C. association’s board of governors and ethics committee, was expelled after she was charged with embezzling money from her clients.

In May 2007, she was sentenced to five years in prison for stealing nearly $2.9 million from her clients over a seven-year period.

—David Baines, Vancouver Sun

http://proquest.umi.com/pqdweb?did=1858396671&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

Dec 2009: the Government of British Columbia agreed out of court to compensate former residents of Woodlands for any abuse they suffered there, except for those who left it before 1974. This settlement prevented the disclosure in court of the documents the BC gov was forced by Madame Justice to the former Woodlands residents who had been suing it.

2009: “ Emily’s Story

People in residential care facilities receive their medications from facility staff. Emily wrote to the CEO of a health authority about her concerns after her mother experienced five medication errors in less than a year.  In the letter she asked:

 

 How would you feel to know that your loved one in a care facility had received incorrect…medications on five separate occasions in less than a one year period of time?

Emily went to the CEO only after raising her concerns with the facility and health authoritystaff. As the medication errors were continuing, Emily was not reassured by assertions that improvements had been made to prevent future problems.

With the ongoing support and involvement of the family council, Emily continued to voice her concerns. About eight months after writing to the CEO, health authority staff wrote to inform her that they had completed a “quality review” of the medication errors her mother had experienced and that 11 recommendations for improvement to the processes for dispensing medication at thefacility had been made…

 

 Ombudsperson Findings

(1) The Ministry of Health Services and the Ministry of Healthy Living and Sport have not adequately identified the province’s commitment to care and the rights of seniors in residential care facilities.

(2) The Ministry of Health Services and the Ministry of Healthy Living and Sport have not ensured that adequate information about residential care facilities is publicly available in an accessible format that allows seniors and their families to plan for and make informed decisions about residential care.

(3) Resident and family councils are important mechanisms for ensuring the well-being of residents in residential care facilities. The Ministry of Health Services and the Ministry of Healthy Living and Sport have not taken the necessary steps to ensure that resident and family councils are adequately supported”.—The Best of Care: Getting it Right for Seniors in BC [Part 1], BC Ombudsman report December 2009, p24 & 51 http://www.ombudsman.bc.ca/images/resources/reports/Public_Reports/public_report_no_46.pdf

2010: Secret Video Banned Forever

(Copyright (c) 2010 The Daily News (Kamloops))

Interior Health has agreed to drop its lawsuit against a former resident who once aired covert video of her father’s alleged mistreatment in a Kamloops senior’s care home.

The order, agreed to by both sides, makes permanent a strict publication ban of the video ordered by the B.C. Supreme Court in 2005. Interior Health dropped its civil action claiming defamation and invasion of privacy by Judy Sellin and her son, Reece.

IHA program director Linda Comazzetto said the order protects privacy of staff.

“Previous court orders were injunctions and temporary in nature. We were seeking something more permanent, which this order achieves.”

Comazzetto said IHA considers the matter settled.

The Sellins installed a camera disguised in a teddy bear above the bed of Judy’s father, 90-year-old Stephen Piccolo, at Overlander Hospital.

From 240 hours of tape, the pair published a seven-minute video on the Internet called For the Sake of Seniors. It alleged neglectful and abusive treatment by staff.

The ban forbids making the video public or describing its contents. It was briefly available on the Internet in 2005

Sellin’s Kamloops lawyer, John Drayton, said the order allows his client to get on with her life and escape financial hardship.

“It was a compromise on both sides. They walked away from any damage claims — money claims. There was a time when the only thing we were fighting was over the tapes and who would have them.”

Drayton said IHA agreed it would no longer demand all copies of the tapes, including originals.

“At the end of the day our people (Sellins) kept the tapes but can’t show them.”

The order states anyone wishing to publish sound or images must have consent of IHA.

Reached Tuesday, the Sellins said they were ready to defend the matter to the Supreme Court of Canada but other circumstances hurt their ability to fight.

“We moved to Alberta to get rest and reprieve. . . . It took its toll,” Judy said.

Citing disagreements with neighbours at their new home outside Edmonton, Judy said their efforts at advocacy and controversy in B.C. “followed us here in a negative manner.

“Two ordinary people advocated as strongly as we did and stood up against the provincial government for what we believe and the rights of seniors. We gave up our lives for years.”

The pair represented themselves in earlier court actions with Interior Health. Drayton agreed to represent them pro bono (without charge) when they were pursued by IHA for defamation and invasion of privacy.

–Cam Fortems Jan 6, 2010 http://proquest.umi.com/pqdweb?did=1935730321&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2010: Vigil commemorates Albo tragedy; With nursing layoffs and cuts to surgical time, situation no better four years later, says Albo

Copyright (c) Feb 22 2010 Trail Daily Times)

Jim Albo’s hatred for Interior Health has only grown since policy left his mother to die alone four years ago.

He’s always said Kootenay Boundary Regional Hospital was warehousing seniors on the third floor and now he’s disgusted by the health authority’s attempt to solve the problem.

“The whole damn outfit is rotten from the core out. If you put a rotten apple at the top of a barrel eventually all the apples will rot,” he said, standing outside the Trail hospital Friday on the anniversary of his mother’s death.

“I’m angrier now than I was before, probably because I was tempered by grief then. They’ve gone after nurses and operating room time and I don’t know what’s going to be next.”

Many are familiar with of the Albo story – 91-year-old Fanny Albo was transferred in February 2006 from the Trail hospital to a facility in Grand Forks, where she died two days later, apart from her husband and family. A broken-hearted Alfie Albo, who was also a patient at KBRH when his wife of 69 years was moved, died a week later.

About 20 people joined Jim Albo in a vigil outside the hospital Friday afternoon, protesting insufficient senior care – some sharing similar stories.

Rickie Beatty carried a picture of her friend Frank Unger who passed last year, two weeks after he was moved from his care home of 10 years.

“I think the move caused him to think that he was being moved there to die,” said Beatty, of the man who lost function in one arm and struggled to carry conversations after a stroke.

Sunningdale resident Rose Wenzel has not personally been impacted but the 75-year-old fears the day she needs assistance.

“Human life is more important than budgets and cutbacks,” Wenzel’s homemade sign declared, referencing the recent cuts to OR times and displaced nurses.

For the past four years, Albo has stood outside the hospital to remind residents of his parents’ tragedy that raised questions about residential care placement and the “first available bed” policy of the time.

The hospital has since revised its policy by ensuring family members approve patient transfers. It then provides temporary placements for seniors without removing them from a preferred residential-care placement list.

More recently, the Trail hospital decided to displace over 20 nurses and hire care aides to deliver care to elderly folks on the third floor waiting for a real home.

“This has outraged me even more,” said Albo. “IHA has raped and pillaged health care. People need to say, ‘I’ve had enough!’”

This decision is not solving the problem, according to Albo, who stands behind his continued message: we need more residential care beds.

“We can always use more,” said Frank Marino, IHA’s Trail health services administrator. “But Trail has a higher level of density than Nelson.”

From a formula perspective, Trail sits above average in the number of available beds for seniors, he explained. The city has 95 beds for 1,000 people over the age of 65, which is above the average of 93 beds.

Locally there are 50 beds at Poplar Ridge, 76 at Columbia View Lodge and 45 at Rosewood Village. Yet the hospital continues to house seniors waiting for a place to live.

On average, 15 seniors live temporarily on the third floor but currently only three await placement, which is evaluated on need. On Friday, there were nine seniors in Trail overall waiting for a bed.

The staffing changes at the hospital were made to accommodate seniors in limbo, according to the health authority.

“The difference is in the philosophy of care,” said Marino, when comparing residential to hospital care. “In residential care, seniors get up, get dressed and are stimulated by activities, at the hospital they’re in acute beds in gowns.”

Looking to give the seniors a sense of home, the hospital has included them in Poplar Ridge activities and given them some flexibility with meals. Seniors shower about the same frequency as they would in residential care, even more by request, said Marino.

But this hasn’t been the case for Hubert Kirk, his family says.

The 77-year-old Castlegar man has been in and out of Trail and Kamloops hospitals since a stroke in the fall.

When daughter Leslie Edwards stopped into Trail to check on him, she said he was “grubby, unshaved and hadn’t showered in days.”

“If I don’t care for him, then no one will,” said the Chewelah, Wash., resident who hopes to move her father into her home but awaits a consensus from family members.

Her dad suffers from delusions and has balance problems since his stroke and to add to his condition, has fallen several times since.

Edwards has not heard back from the health authority since she placed a call in December, concerned about his care at Interior Health facilities in Kamloops.

Marino was surprised to hear Edwards never received a return call from the health authority, as there is someone who gets paid to respond to such queries, he said.

The retired registered nurse of 28 years said she “knows too much” and that she’s “too educated,” often walking into hospitals and seeing violations before she even blinks.

Kirk doesn’t want to stay in the hospital and is waiting for placement locally, unless the family decides to send him to live with Edwards.

The hospital has improved on managing waitlists and working with seniors looking for placement, said Marino, who suggests other solutions like home support, assisted living or supportive housing where possible.

The hospital approaches placing senior couples with care, but Marino said it is often a challenge.

“I prefer to try and get them in the same facility but it’s not always possible,” he said.

In some situations one person may need residential care while the other is fine to live at home, or one may need another type of care for dementia, he said by way of example.

“It’s something that will always be an issue with the Albos, and it’s understandable,” said Marino of the annual rally outside the front doors of the hospital. “I understand why he’s out. I just hope he remembers positive memories of his parents.” http://proquest.umi.com/pqdweb?did=1970131441&sid=2&Fmt=3&clientId=58962&RQT=309&VName=PQD

2010: 

Senior loses legs to hospital infections, bedsores

Family blames neglect by staff for double amputation

Tuesday, March 23, 2010

By Kathy Tomlinson, CBC News

Retired postal carrier Gary Davis had to have both legs amputated to stop the spread of infection. (CBC) The daughter of a retired B.C. man who died in a publicly funded, long-term care facility believes her father suffered needlessly as a result of neglect by staff.

“What they did was wrong,” said Rita McDonnell. “The care was awful.”

Gary Davis, a former postal carrier from Surrey, was 68 years old when he developed severe bedsores and hospital-acquired infections, under the care of the Fraser Health Authority. He eventually had to have his legs amputated as a result.

“It makes me sick to my stomach,” said his daughter. “I still think about it. I can’t sleep some nights because I think of what it was like for him.”

‘It was awful … he was rotting.’—Daughter Rita McDonnell

Records shows staff at three facilities failed to keep Davis off his back — despite doctor’s orders — as his bedsores and infections became increasingly worse.

“In order for [his sores] to get as severe as they did, he had to be sitting on his back so long — in his own urine, feces, you name it,” said McDonnell.

“They admitted to us that they should have turned him more often,” said her husband Mark McDonnell. “They didn’t give him the care that he deserved.”

Patient not mobilized enough

Davis’ health downturn began when he was admitted to hospital in 2006, with a groin aneurysm. Over the next several months, he suffered from poor circulation and other complications, in Langley Memorial and Royal Columbian Hospitals.

A summary of Davis’ medical records from that period show “the patient has been transferred to the wheelchair .… However, this has not been done consistently.”

“Nurses notes lack information as to how frequently the patient was mobilized.”

The notes show he developed pressure ulcers — commonly known as bedsores — on his back and legs and state that the “wounds continued to deteriorate, and he contracted e-coli in the urine and a staph infection.”

Rita McDonnell and her husband Mark believe her father was neglected by hospital staff. (CBC)Fraser Health’s director of residential services, Heather Cook, said Davis’ poor circulation was also a complicating factor.

“When you have poor circulation, it really challenges the ability to heal,” said Cook. “This was an individual with exceedingly complex medical conditions.”

On at least two occasions, doctors ordered Davis be kept off his back as much as possible. However, McDonnell was not informed about his dad’s sores, records show, until several months after they surfaced.

“I started asking questions,” said McDonnell. “I wanted to know why he smelled so bad.”

McDonnell said she was horrified when staff removed his bandages and she saw the large, open, festering wound on her father’s lower back for the first time.

“It was awful, unbelievable,” she said. “It was black. He was rotting.”

When she then complained her father wasn’t being moved enough, McDonnell said, “One of the nurses told me, ‘Care aides don’t get paid enough, you couldn’t pay me enough to do that job’.”

Davis was transferred to Cedar Hill, a long-term care facility adjacent to Langley Memorial Hospital, where the records indicate staff also didn’t move him as much as recommended by the specialists.

Specialist expressed alarm

“The wound care specialist … mentioned that the patient was in bed a lot,” the file notes state. “He has not been taken out of bed … wounds were still not healing”

McDonnell said that same wound specialist pulled her aside and suggested she consider suing the health authority.

The pressure ulcer on Gary Davis’s lower back was deep and inflamed when his daughter saw it for the first time. (CBC)“She said you should get a lawyer for what happened to your dad — the care has been horrific.”

According to the file notes, “Staff at Cedar Hill did have some difficulties when trying to mobilize the patient and tend to his wounds. The staff were educated on how to properly mobilize the patient.”

The facility did provide a special air mattress, to relieve the pressure, but the notes indicate staff didn’t use it properly, which negated its effectiveness.

“They let him lie there — and they kind of gave up on him a bit,” said his son-in-law.

The couple insisted they couldn’t bring Davis home, despite their concerns, because he was too ill for them to look after.

Several weeks later, McDonnell was told that if her father’s legs were not amputated, he would die from the spreading infection — so the family consented to the operation.

“In order for his back to survive, he had to lose his legs, because of the sores on his legs, the bedsores on his legs,” said McDonnell.

Without his legs, Davis recovered and lived infection-free for several more months.

Review finds several care concerns

McDonnell filed a complaint with the B.C. government’s Patient Care Quality Review Board, which concluded, “It is in the Board’s opinion that this matter raises several care quality concerns.” Fraser Health administrator Heather Cook says communication with the family was the main problem. (CBC)

Soon afterward, Davis died — while still in the long-term care facility. His family was told he succumbed to pneumonia.

“His quality of life was pretty severe. He said, ‘I can’t go to the washroom on my own. This hurts. I can’t be human. I don’t feel human.’ It was awful for him,” said McDonnell.

“I miss talking to him and visiting him. He was important to me,” she said tearfully.

Meantime, a national group trying to raise awareness about pressure ulcers said cases like his are all too common.

“It is a huge problem,” said Pat Coutts, a wound care specialist and chair of the Canadian Association of Wound Care. It estimates 70 per cent of bedsores in Canadian hospitals could have been prevented.

Most bedsores can be prevented, group says

“The skin is an organ. It needs to be looked after,” Coutts said. In a facility, patients need to be turned, or be on a surface that will turn them. If they’re in diapers they need to stay as clean and dry as you can possibly keep them.”

The government review into the Davis case criticized Fraser Health for not informing McDonnell about what was going on with her father.

It also expressed concern about his care being “fragmented,” and it concluded, “Assignment of a primary care physician might have provided a more consistent continuum of care.”

Cook from Fraser Health insisted lack of communication with the family was the biggest problem.

“With an individual, with the complex medical issues that this particular resident had, the likelihood was that there was very little we could have done to impact his life anyways,” said Cook.

“Had we been able to communicate more effectively and in more timely fashion with the family, this might not have been so challenging for them.”

That doesn’t satisfy McDonnell.

“It’s nice and fancy for them to say that,” she said. “It’s their way of getting out of what really happened. They didn’t do their job.”

Pat Coutts, a registered nurse with the Canadian Association of Wound Care, says the majority of pressure ulcers in hospital can be prevented. (CBC)As a result of the Davis case, Cook indicated Fraser Health has improved its communications with families and put in a better system to care for patients who are transferred between facilities.

The Canadian Association of Wound Care, which gets funding from the industry that supplies hospitals with wound care equipment, estimates 25 per cent of people in Canadian health-care facilities have a pressure ulcer at any given time.

Fraser Health disputes that figure, saying less than three per cent of long-term care patients develop the sores, while in any of its facilities.

McDonnell now hopes her father’s story will encourage other families be more vigilant — to watch for a problem she was previously unaware of.

“I just want people to be aware of what can happen to them and their loved ones,” she said.

http://www.cbc.ca/canada/british-columbia/story/2010/03/22/bc-bedsoreneglect.html

2010: The BC government essentially tries to steal a large portion of the federally funds for a provincial program that provides assistive technology to people with disabilities. [EQUALS BC’s website http://equalsbc.wordpress.com/ ]

2010: Victim’s family seeking justice; Mom died in gov’t health-care facility but kin are ineligible for compensation

Copyright CanWest Digital Media Jun 21, 2010

Abbotsford mom Judith Jarabek-Gray died because government caregivers let the battery run out on her ventilator — and her family can’t do anything about it.

“It’s not right. I don’t want my mother to be the guinea pig here — and she was,” daughter Melissa Jarabek said Sunday.

She said staff’s primary job at the CareLife Fleetwood facility in Surrey, a subsidiary of the Fraser Health Authority, is to “take care of people on ventilators.”

“The irony is they forgot to plug the ventilator in. Obviously they weren’t operating to the standards they should have,” she said.

Jarabek has discovered in the past several months that Fraser Health can’t be held accountable under the law.

She said the Family Compensation Act in B.C. does not permit people to seek justice for pain and suffering in cases like her mother’s.

“The law allows for people to be negligently killed and there’s no recourse,” she said.

No financial compensation can be obtained either, because Jarabek-Gray, 61, was not earning a wage at the time.

Jarabek said injustice has been piled on injustice.

“There is no culpability. I’m not OK with that,” she said.

Marg Fraser, assisted living program director for Fraser Health, admitted mistakes were made in a letter to Jarabek-Gray’s husband Allen Gray on May 4.

Fraser said procedures have since changed, staff training improved and new equipment purchased.

“As a health-care organization, we are committed to learning from our system and process failures,” she said.

Fraser said in the future “staff will be required to demonstrate competence in ventilator operation and standards.”

Jarabek said her mother’s tragic death could have been prevented if caregivers had been paying attention on Jan. 21.

After just 16 days at the $6,000-per-month facility, her mother was finally settling in, despite a tiring fight with Lou Gehrig’s disease (ALS).

At 3:30 p.m., she was taken off her bed ventilator, which was supplied with continuous power by a wall socket, and moved to a chair ventilator, attached to a battery.

Returned to the bed one hour later, she remained attached to the chair unit, whose battery had a six-hour life span.

Jarabek said staff visited “eight or nine” times in the next several hours, but “not one picked up on the fact” she was on the wrong ventilator.

Attendants did not hear a low-volume alarm going off four separate times over a three-hour period. The noise was so low that her husband, who was visiting, didn’t hear it.

“The alarm system had a quiet warning sound in battery mode and the alarm was an intermittent beep versus a continuous alarm,” said Fraser.

Fraser said a staffer “lacked an understanding” that the chair alarm could be connected to a call bell system that would have notified staff of low batteries.

Jarabek said Fraser Health saved money by buying a cheaper chair ventilator without a loud alarm function.

Jarabek-Gray passed away at 11:15 p.m., one hour after her husband left for the evening.

Jarabek believes attendants and managers would have done a better job if they knew that they would be held accountable.

“This has destroyed my brothers and stepfather. Unfortunately when you’re dealing with big [government-owned] corporations like Fraser Heath, the bottom line is money. They can say sorry all they want, but the only way to make them accountable is money.

My mother died alone. She was just another number.” –Kent Spencer Vancouver Province June 21 2010

http://proquest.umi.com/pqdweb?did=2065136021&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2010: B.C. needs law for wrongful death: Lawyer; No recourse for negligence

Copyright CanWest Digital Media Jun 22, 2010

B.C. doesn’t have wrongful death legislation — and it should, says Burnaby lawyer Don Renaud.

“I often have to tell survivors: ‘Sorry, there’s nothing I can do for you. The law regarding your loved one says their life was valueless,’” said Renaud on Monday.

Renaud, head of the Wrongful Death Law Reform Group, has seen families broken up and people lose their jobs while trying to cope with the stress of a wrongful death.

“Humans need to see justice done. If they don’t, people go through their lives with a big hole. They can’t understand why there is no justice,” said Renaud, an injury lawyer who has been involved in such cases for 25 years.

The issue came up this week after Abbotsford mom Judith Jarabek-Gray lost her life when Fraser Health employees let the batteries on her ventilator die last January.

Her daughter, Melissa Jarabek, wondered why there was no compensation for pain and no recourse for negligence.

Renaud said the law permits civil suits to be filed in B.C., but the province’s Family Compensation Act severely restricts damages that can be claimed.

He said there is no financial compensation when a child, senior or person with a disability loses their life.

Renaud said the reason is because their lives are deemed to be valueless: they weren’t working and weren’t supporting dependents.

“Unless the deceased was a breadwinner, there isn’t much financial compensation. About all you can hope for is a payment for funeral expenses,” he said.

Renaud said no compensation can be claimed for grief and suffering.

The B.C. Coalition of People With Disabilities has called for a Wrongful Death Act that would include full compensation and justice for surviving family members.

“It would include proper assessment of the circumstances of each case, accountability for anguish and grief and empowerment to seek punitive damages,” said Jeanette Andersen, a ventilator user and coalition board member.

B.C.’s Ministry of the Attorney-General did not answer a list of questions submitted by The Province and a spokesman said Attorney-General Michael de Jong was not available.

“Government is currently considering the Family Compensation Act,” said the spokesman. –Kent Spencer Vancouver Province June 22 2010 http://proquest.umi.com/pqdweb?did=2065958661&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2010: No legal remedy for death

Copyright (c) 2010 Black Press Group Ltd.)

She died because a caregiver at CareLife Fleetwood neglected to plug in her respirator.

And because of a law imported from Britain more than 150 years ago, her family has no legal remedy.

Abbottsford’s Judith Jarabek-Gray, 61, was admitted to Surrey’s CareLife on Jan. 5 of this year, when her Amyotrophic Lateral Sclerosis (ALS) required her to be placed on a ventilator.

Two weeks later, a nurse accidentally left Jarabek-Gray’s ventilator on a battery pack rather than plugging it into a wall, where it would have had continuous power. Instead, the six-hour battery ran out and Jabarak-Gray died.

On May 4, Fraser Health Authority’s Program Director for Residential and Assisted Living Marg Fraser wrote to the family apologizing for the error.

“While the care staff inserted the correct number of cords into the wall outlet, in fact, the cord that ensured continuous power was not plugged in,” Fraser wrote in the letter. “We are currently developing mandatory education sessions for all staff led by the Bio-Medical Team.”

Daughter Melissa Jarabek was stunned to learn that CareLife can’t be held accountable civilly for causing her mother’s death.

“Don’t you think that if Fraser Health knew they could sue them, they would spend the money ensuring that they had proper procedures and equipment in their facilities?” Jarabek said Wednesday.

She points out specifically to the batteries on the portable respirators, which have now been replaced with new ones that have louder alarms.

Jarabek said she’s getting several emails from other people with similar stories throughout the health region.

“The negligence is astounding,” she said.

She wonders if the province and health authority could be held accountable in civil court if it’s found more lives could have been saved.

“Everything was preventable that happened,” she said.

The health authority will not be subject to punitive damages in court because of a law that has remained unchanged since it was pulled from Britain in 1846.

It essentially states that there is no civil remedy for negligent death if the deceased had no dependents. That includes children, those without income, or people who are infirm, such as Jarabek-Grey.

All other provinces in Canada have amended the law except for British Columbia. It is currently being reviewed by B.C.’s attorney general.

Don Renaud, a injury case lawyer, said that the situation as it stands is not acceptable.

“She has a right to sue, but a right without a remedy isn’t a right at all,” Renaud said. “There’s virtually nothing that’s permissible under the combination of the Family Compensation Act and the Estate Administration Act.”

He has facilitated a grassroots group of about 150 families looking to change the law.

kdiakiw@surreyleader.com–Keith Diakiw The Leader June 25, 2010 http://proquest.umi.com/pqdweb?did=2066306681&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

2010: Seniors’ Care Homes in Need of Care http://robwipond.com/?p=353

2010: While we make every effort to assist you in caring for your belongings, [Vancouver Coastal Health]cannot assume responsibility for missing valuables. Although each room has a bedside table with a drawer that locks, we recommend that items of monetaryor sentimental value be left in safekeeping with your family or in a safety deposit box.”—George Pearson Centre Resident and Family Handbook, p8 [June 2010] http://vch.eduhealth.ca/PDFs/JB/JB.300.G46.pdf

2010: “We are embarking on a project looking at Least Restraint Guidelines, starting on Ward 3 and Ward 6. This looks at systems we have in place to support resident safety—how we decide on the things we think should be done to enhance resident safety, how we negotiate with residents about choice they have to their own and others personal safety, and how we document these decisions in resident care plans. This will be rolled out to other wards in the fall.”

–Marion Biln (RN, BScN) GPC Residential Services Manager, PEARSON PRESS, A Monthly Newsletter of the George Pearson Community, July 2010

2010: Vancouver Police offcer shoves a voter with a disability to the sidewalk in the most accessible city in Canada:

http://www.youtube.com/watch?v=CX3nTOBt9mI

2010 video on need for Wrongful Death Law in BC:

http://www.youtube.com/user/WrongfulDeathReform

2010: By Cheryl Rossi, Vancouver Courier September 15, 2010

Every day, a seven-year-old boy who’d been impaled in a bad car accident had to get the dressings on his abdomen changed in a hospital in Windsor, Ont.

It was painful and messy and involved screaming and crying, but his parents weren’t there to hold his hand because they were being nursed in a separate ward.

That’s where Allyson Grant, an acting student, stepped in playing the role of Dr. BB, and with the help of her instructor mimicked the procedure using scarves and a hat.

It worked. Healthcare workers could change the dressing with greater ease and the boy became less upset as he became more distracted.

Eight years later, and having moved to Vancouver, Grant hopes her recently founded Jest for Joy society can provide the same therapeutic healing powers of “clown doctoring” to Vancouverites in need.

She and her colleague, Briana Rayner, who performs as Dr. A. B. Prepared, have worked with residents of the George Pearson Centre since May 2009, with Jest for Joy modelled after the Fools for Health program Grant worked with in Windsor.

Jest for Joy clown doctors work in pairs so the onus is never on the viewer to reciprocate. They improvise songs and sketches and sing songs including “You are My Sunshine.”

“So many of us know it from our childhoods and it connects to a place of feeling secure and loved,” Grant said.

Ron Stedman, supervisor of the recreation therapy department at George Pearson, said residents and staff at the long-term care facility spoke overwhelmingly of the benefits of Jest for Joy in a recent survey. The centre houses 120 people, all of them in wheelchairs, half of them with multiple sclerosis.

“A long-term care facility can be kind of boring, not a lot going on a lot of times and a little lonely for the residents, so just having [Jest for Joy] come in brightens up the day. And the staff actually get a real kick out of it, too,” Stedman said.

He concedes a small proportion of residents and staff don’t like the clown doctors, so the performers leave them alone. But the reactions of a few grumpier residents have been a surprise.

“I walk by and there’s this resident in there singing and joking with the clowns. I go into his room and he kicks me out,” Stedman said.

Grant said clown doctors offer lively, focused attention that healthcare providers are often too busy to provide. Clown doctors also interact with family members and staff to alleviate some of their worry and stress.

Grant was turned onto clown doctoring by her acting instructor at the University of Windsor, Dr. Bernie Warren, who started Fools for Health.

He helped her train Jest For Joys clown doctors in medical terminology, character development, improvisation and how to integrate with staff.

The service doesn’t cost George Pearson a cent, but Grant seeks a corporate sponsor for her clown doctoring society so its service can spread.

The society has insurance in case a clown doctor accidentally unplugs the wrong cord, and it pays its professional performers $100 for a four-hour shift.

crossi@vancourier.com

© Copyright (c) Vancouver Courier

http://www.vancourier.com/health/Actors+introduce+clown+doctoring+local+patients/3528224/story.html

2010: Case brings to light dispute between FHA and surgeons

By Cornelia Naylor, The Times October 8, 2010

A Burnaby senior who was stuck at Chilliwack General Hospital for almost three weeks after surgery for a broken femur was caught in the crossfire of a dispute between the Fraser Health Authority and orthopedic surgeons, according to a spokesperson for the surgeons in the Fraser Health region.

Margaret Bailie, 86, broke her leg while vacationing in Point Roberts, Wash., last month and was taken across the border to the Delta hospital.

Instead of being transferred to Peace Arch or Surrey Memorial–the hospitals that normally accept Delta’s orthopedic cases (Delta doesn’t offer orthopedic surgeries)–Bailie was shipped 115 kilometres to Chilliwack.

She arrived heavily medicated with low blood pressure and was having trouble breathing, according to her daughter, Colleen Mullen.

“She was almost comatose,” she said. “I actually had a nurse tell me that most patients that come in as bad off as she don’t always make it.”

It was no overstatement.

Last week, another senior–80-year-old Rose Lee–who was shipped from Burnaby to Chilliwack with a compound leg fracture, died at Vancouver General Hospital after being moved five times within the Fraser Health region.

Although Bailie is now recovering at Burnaby Hospital, the 18 days in Chilliwack took an emotional as well as a physical toll on the active senior, who still lives in her own home and swims in the ocean during the summer months.

“Her family wasn’t there, and she really needed her family at that point,” said Mullen. “I could see her heading into depression.”

David Wickham, the president elect of the B.C. Orthopedic Association and spokesperson for orthopedic surgeons in the Fraser Health Authority (excluding Royal Columbian Hospital in New Westminster), acknowledged in a Times interview this week that Bailie’s ordeal was precipitated by a dispute between orthopedic surgeons and FHA.

The conflict was sparked in April when Fraser Health downgraded orthopedic surgeons’ on-call rates, or Medical On-Call Availability Program (MOCAP) levels.

Under B.C.’s Physician Master Agreement, on-call doctors required to respond to emergency calls within 45 minutes are paid at MOCAP level 1 while physicians required to respond within two hours are paid less at MOCAP level 2.

FHA decided orthopedic emergencies didn’t require a 45-minute response time.

“Orthopedic surgery is often not urgent in terms of it’s not unusual for patients to wait and hour, two hours, 12 hours without that adversely affecting outcomes,” said Fraser Health spokesperson Joan Marshall.

To Wickham that is a clinical mistake, and he adds that orthopedic surgeons in every other health authority in the province are paid at MOCAP level 1.

“They’ve implied that they don’t feel that the level of orthopedic care in this health authority should be the same level as every where else in British Columbia.”

In protest, orthopedic surgeons in the Fraser Health region have set up their own rotating on-call system.

Instead of each hospital having its own on-call orthopedic surgeon, one hospital and one on-call physician are assigned to receive all the orthopedic trauma cases in the entire health authority from White Rock to Chilliwack.

Once that hospital has handled five patients, the on-call hospital and physician rotate–up to a maximum of three different hospitals in one day.

While the system involves “some” patient transfers, Wickham said each hospital still has an orthopedic surgeon on standby for “life and limb” emergencies.

“We will not let any patient in Fraser Health, who has a life or limb type of injury, wait,” he said. “They would get seen right away by an orthopedic surgeon at that facility.”

That was little consolation for Mullen, who was disgusted when she found out her mother had been caught in the middle of the dispute.

“You don’t ship 80-year-old people around the countryside for surgeries when they’re already in shock,” she said.

Ironically, however, Wickham said patient transfers could become the norm if FHA goes ahead with another plan aimed at orthopedic care in the health authority.

In August, Fraser Health e-mailed the BCOA, announcing plans to consolidate the health authority’s orthopedic trauma care into three or four regional centres.

That would mean small and medium hospitals like Chilliwack would likely lose the capacity to offer emergency orthopedic surgeries, said Wickham, and their patients would have to be shipped to a centralized trauma centre elsewhere.

“These transfers that everybody’s talking about will become permanently in place,” said Wickham.

Marshall, however, said consolidation–now planned for five centres–will allow the authority to concentrate health care money at each centre.

“If we can dedicate to trauma centres, we’re willing to invest in those trauma centres as well,” she said.

In September, Fraser Health asked the surgeons to co-operate in consolidation and offered to restore MOCAP level 1 rates to orthopedic surgeons on-call at future centralized orthopedic trauma centres.

The surgeons rejected the plan in a Sept. 30 letter.

While Fraser Health and orthopedic surgeons continue their dispute, Wickham insists patients with orthopedic emergencies in the Fraser Health region continue to receive timely care.

Mullen, however, disagrees and is now writing letters to the Minister of Health and FHA’s Patient Care Quality Office in the hope of ending the transfers of patients like her mother and Rose Lee.

© Copyright (c) Chilliwack Times

http://www.chilliwacktimes.com/health/Senior+caught+medical+crossfire/3643432/story.html

2010: Nursing home left injuries untreated: family

Health authority says ambulances are not always called when residents fall

Tuesday, October 26, 2010 By Kathy Tomlinson, CBC News
The family of an elderly woman who fell and broke her hip in a Vancouver nursing home has complained that she was left alone and in pain while staff failed to acknowledge her injuries or get medical attention.

“She was in pain … and her leg was visibly crooked,” said granddaughter Alexandra Ziebeil. “I phoned my mom and told her I had to call 911. She had to go to the hospital.”

Erna Luttmer, 95, who has severe dementia, had been a resident at Yaletown House, a not-for-profit long-term care facility, for 12 years.

In February, Ziebeil arrived at the home and said she found her grandmother in distress.

“I mentioned to the care aide that something was wrong with my grandma — and that’s when they told me she had fallen earlier in the day,” said Ziebeil. “The minute [the care aide] touched her leg, my grandma screamed out in pain — so I knew something was wrong.”

Nurse did assessment

“Apparently the nurse in the nursing home had assessed her, and she kept telling me that everything was fine,” said Ziebeil.

Granddaughter Alexandra Ziebeil, left, says she is happy to see Erna Luttmer, 95, living in the family home instead of Yaletown House. (CBC)After Ziebeil called 911, she said paramedics arrived and pointed to swelling from an injury, but she said the nurse continued to insist Luttmer’s leg was just fat.

At St. Paul’s Hospital, doctors found serious hip and leg fractures and Luttmer was rushed into emergency surgery.

Her family later concluded she had fallen on the floor while trying to get into her wheelchair, without proper assistance.

“My grandma was a ‘two-person assist,’” said Ziebeil. “She was supposed to have two people with her — helping her — and she didn’t.”

After Luttmer fell, Ziebeil said staff used a crane-like device to lift her into the wheelchair, and the family believes that may have made her injuries worse.

“It wasn’t just that her leg was broken, but it had been broken and shifted and it was two inches shorter than the other leg,” said Ziebeil.

“Who knows how long it would have taken them before they finally admitted something was wrong and called the hospital?”

Family had several concerns

Luttmer’s daughter, Frauke Owen, said she believed Yaletown House staff sometimes left residents unattended for too long, too often. She had hired private caregivers to be with her mother all day, but Luttmer’s companion hadn’t arrived the morning she fell.

Frauke Owen, left, and daughter Alexandra Ziebeil have several complaints about how Erna Luttmer was treated in the nursing home. (CBC)Owen has since filed complaints with the health authority’s licensing office and the provincial nursing regulatory body about her mother’s treatment.

CBC News asked Yaletown House for an interview, but the executive director declined.

It is one of 54 long-term care facilities licensed by Vancouver Coastal Health. VCH spokesperson Anna Marie D’Angelo refused to talk about the Luttmer case, citing privacy.

D’Angelo said Yaletown House has reported 29 falls by elderly residents to the health authority since January 2009. She said ambulances are not always called when a resident falls, instead a nurse may “monitor” the injury for 24 hours.

Hospital not always needed: health authority

“It’s not necessarily done right at the specific time, because it can be quite traumatic for a frail elderly person to go directly to hospital,” said D’Angelo.

Yaletown House is a non-profit, long-term care facility in downtown Vancouver for seniors with complex needs. ”They might be uncomfortable — they might not be. So they are assessed and monitored. Usually, within a 24-hour period you’re going to be able to know what the extent of the injury is.”

“My mother didn’t have a voice,” said Owen. “She was just totally dependent and at the mercy of those people that I should trust to take care of her. And she wasn’t taken care of.”

Owen suspects staff may be reluctant to call for medical help, because they then have to file an incident report, which can reflect badly on them.
“This is the horrifying thing. If we wouldn’t have been there when my mother fell we wouldn’t know the outcome. She could have had big medical complications.”

“I think they are afraid,” said Ziebeil. “They don’t want to be blamed for anything. If they report every single fall, they don’t want their numbers to go up.”

D’Angelo insisted staff did not, and would not, cover up or fail to report serious incidents.

“We take great issue with those kind of allegations,” said D’Angelo, adding if anyone tried to do that, other staff could report them — and they would be protected under whistleblower laws.

“Your licence could be removed if you were found not complying with these kinds of regulations,” said D’Angelo.

Doctors orders not followed: family

After her mother recovered from hip surgery, Owen said the surgeon gave orders for her to walk as much as possible.

Vancouver Coastal Health spokesperson Anna Marie D’Angelo, left, tells the CBC’s Kathy Tomlinson that ambulances are not always called immediately when elderly residents fall because a trip to hospital can be needlessly traumatic. (CBC)However, when Luttmer got back to Yaletown House, Owen said the facility’s physiotherapist suggested she stay in bed. The family hired its own therapist to work with her and she is now up walking.

“If we weren’t there to make her walk and get her quality of life back — like she has now — what would have happened to her?” Owen asked.

“If it were left up to them, my grandma would have never walked again,” said Ziebeil.

Owen said the last straw came when Yaletown House moved her mother to a new, unfamiliar room, in the middle of the night, against the family’s wishes.

“We expressed concerns several times in meetings with management and we were told several times if you don’t like it here, leave,” said Ziebeil.

In August, the family pulled Luttmer out of the facility. She is now cared for at Owen’s home, with help from private caregivers.

Elder law group cites strained system

“I think what we are seeing is cracks in the system,” said Laura Watts, director of the Canadian Centre for Elder Law Studies.

Watts said she often hears from relatives like Luttmer’s, who are shocked by what they see in long-term care — and who have become distrustful of a system under increasing strain.

“We are hearing reports of people being left alone for long periods of time. We are hearing reports of falls and danger. We see people are being left without proper toileting,” said Watts.

“We see facilities putting restriction on how often people can be toileted — something I think none of us wants.”

Erna Luttmer lived in the same room in Yaletown House for 12 years. She is not surprised to hear families complain that facilities try to downplay problems.

“In all institutions, there is a great concern with looking like you are not doing a good job, and having ramifications coming back and investigations. And, in some cases, people may try to cover things up.”

Watts believes the real solution would be a big shift to home care. Owen said taking her mother home was one of the best decisions she’s made.

“My mother is safe here — she’s looked after. But it’s not just about my mother. It’s about the rest of them that are still in there,” said Owen. “I feel horrible for leaving the rest.”

http://www.cbc.ca/thenational/indepthanalysis/gopublic/story/2010/10/25/bc-nursinghomefall.html

http://www.cbc.ca/video/player.html?category=News&zone=national&site=cbc.ca&clipid=1624946334

2010: Daughters outraged by father’s painful death
Gangrene leads to death of elderly man in long-term care
Tuesday, November 2, 2010
By Kathy Tomlinson, CBC News

The daughters of an elderly man who died of a severe infection last month in Langley, B.C., believe inadequate care by overworked staff at his publicly run care home contributed to his painful death..
“This health system is in total collapse as far as I’m concerned,” said Elaine Walton. “He was a casualty. He was collateral damage.”

“That’s not the way we are supposed to die,” added her sister, Barb Carlson. “We are in a civilized country.”
Their father, Fred Porteous, 93, lived in Maple Hill, a long-term care facility adjacent to Langley Memorial Hospital. He had poor circulation due to diabetes, leaving him particularly susceptible to infection in his extremities.

In the spring, his daughters noticed he had a sore on his toes.

“They didn’t even bandage it, and both Elaine and I had told them several times this is not good health care,” Carlson said. “It just got progressively worse and worse.”

Not enough qualified staff: family

They said their father was looked after by care aides but seldom by nursing staff.
“They [care aides] are burnt out. And this is tough on them, too, I know it is,” Walton said. “They are being stretched beyond their limits.”

The sisters said they pushed staff constantly to keep a fresh dressing on their father’s sore. Carlson said she even complained to the manager on site.

“That person in charge stated, ‘I promise you, Barb, things will get better. Several neglectful situations have been overlooked and I apologize,’” Carlson recalled.

To put the manager’s statement to the test, Carlson said, she wrote her initials — B.C. — on the bottom of her father’s bandage. Two days later, her initials were still there, she said.

To complicate matters, she said, Porteous often refused to take antibiotic pills.

Carlson said a consulting physician suggested her father’s infection should be treated intravenously, but the manager told her that couldn’t be done at Maple Hill because none of the staff is qualified to handle the procedure.

The Fraser Health Authority, which runs the facility, confirmed nurses don’t administer IVs there because it is a specialized skill set not often needed in long-term care.

Gangrene set in

“His pain was absolutely atrocious,” Carlson said. “He was in agony.”
At one point, Walton said, she lifted her father’s bandage and was shocked to find his whole foot had turned black from gangrene.

She said she urged staff to take her father to Langley Memorial hospital, which is in the same complex, but she said they told her there wasn’t enough staff to do that either. So Walton and Carlson took their father to the emergency room themselves.

“The two doctors that were on call in the emergency ward both said, ‘Where did this gentleman come from?’ and we said ‘Maple Hill, across the street’ and [one doctor] said, ‘My gosh, why is this the first time we have seen him?’ ”

Dr. Michael McBryde, medical director of Fraser Health’s residential and assisted living program, was not involved directly and said he couldn’t go into detail about the case. However, he said Porteous was frail and elderly, and his underlying diabetes and poor circulation made infection very difficult to treat.
“There are situations — and this one that you are referring to would be one — where really there is no further treatment that is going to be curative or even that is going to prolong life,” McBryde said.
In the emergency room, Carlson said, her father was given intravenous antibiotics but that treatment lasted only a few days. Back at Maple Hill, his condition deteriorated again. A care aide hired by the family took Porteous back to the ER in October, Carlson said, but he died soon afterward.

McBryde confirmed infection from the spread of gangrene was the cause.

“I really want to extend my sympathies and condolences to the family, because I know that what they are going through at the moment is really, really tough,” McBryde said.

Carlson said doctors at the hospital told her amputation could have prolonged her dad’s life, and alleviated his suffering if he had been treated sooner.

“If he had arrived in the early beginnings when there were just little sores they could have amputated the toes, but because of the long delay nothing was done,” Carlson said.
Health authority sees no wrongdoing

McBryde insisted the health authority did nothing wrong. He said amputation could have also increased the elderly man’s suffering.

“I really don’t think there is anything that could have been done different than what was done in this situation that would have made a material difference,” McBryde said. “Amputation carries with it risks, and so there is a risk that if you amputate the person may not survive the procedure.”
Carlson and Walton aren’t buying that explanation. They believe inadequate staffing levels and qualifications at Maple Hill caused their father to suffer needlessly.

McBryde said Fraser Health is increasing direct staff time with patients in all long-term care facilities by 15 per cent starting in January.

“We feel that the mix that we are introducing will produce a better level of care than we have experienced to date,” McBryde said. “And we are committed to continue to increase those direct care hours throughout the next two years.”

Care time to increase

Patients will get more one-on-one care time from care aides and licensed practical nurses, McBryde said, and less from registered nurses: “There’s very good evidence that the more direct-care hours that you give the better the care is.”

Documents from the B.C. Nurses Union show RN staff levels will be cut by more than half at Maple Hill, where Porteous died. With fewer nurses watching, union president Debra McPherson predicted, patients like Porteous will be more even vulnerable.

“When complications are setting in, the registered nurses are not having enough contact with the patients to rescue them from what could be fatal complications and that will get worse,” McPherson said.
At one facility in the Lower Mainland, McPherson said, a single nurse is responsible for four floors of patients.

Carlson said she expected the health authority would not see any wrongdoing in her father’s case, but she plans to file a formal complaint nevertheless.

“I think I should have spoken up and yelled sooner,” Carlson said. “We didn’t want to put dad’s care in jeopardy by having the staff mad at us. Now, we couldn’t care less if they are mad at us.”

http://www.cbc.ca/canada/ottawa/story/2010/11/01/bc-infectiondeath.html#ixzz14GDUUFMG

2010: Mon Nov 15, 2010

By The Canadian Press

VICTORIA – British Columbia’s children’s watchdog is demanding a face-to-face meeting with senior bureaucrats after a 15-year-old girl with Down syndrome was left alone with her dead mother’s body for nine days.

In a letter sent Monday, child advocate Mary Ellen Turpel-Lafond asked for a meeting with Lesley du Toit, the deputy minister of the Children and Family Development Ministry.

“Given the extreme concern about the ministry’s conduct in this matter, I request an urgent meeting with you and your senior bureaucratic staff to review what occurred,” she wrote in the two-page letter.

Although family members and neighbours said they had warned child care workers that the mother was a drug addict and alcoholic who neglected the child, she was returned to her mother’s care.

After days without sighting either mother or daughter, concerned neighbours finally broke into the family’s mobile home in Cultus Lake, B.C., and found the girl emaciated and filthy, sitting on the couch with the decomposing body on the floor nearby.

Neighbours said the teen, who cannot be identified because she is now in provincial care, had a blistering diaper rash down her legs to her ankles. She reeked of urine and had lost so much weight that it was difficult to recognize her.

Turpel-Lafond said she is troubled the ministry did not register the September incident or inform her office.

Both she and the coroner’s service are now investigating after the case came to light in media reports.

Turpel-Lafond’s letter stated she is concerned she’d received no notice in the two months after the girl was discovered.

“I am troubled that no serious incident or critical injury reportable circumstance report was registered within the MCFD system at all,” the letter stated.

The letter also said there is a legal duty under the Representative for Children and Youth Act for public bodies to report information involving the death or critical injury of a child receiving government services.

Turpel-Lafond said her preliminary findings indicate that the children’s ministry failed in its statutory duty to report the critical injuries of a child to her office.

She said her current investigation will involve interviews under oath of “officials with responsibility for internal oversight policy and administration of programs received by this family.”

The children’s ministry will develop a response to Turpel-Lafond’s letter, a spokesman said in a statement.

He said it would be premature to formally refer the matter to her while there is still an ongoing assessment of the extent to which the child was injured.

“In some cases, harm to a child is evident immediately, while in other cases — depending on the circumstances of the child — it may not be,” the statement said. http://ca.news.yahoo.com/s/capress/101115/national/girl_mother_dead

2010: Disabled woman wins $36,000 human-rights case after being fired

SUNNY DHILLON

VANCOUVER— From Tuesday’s Globe and Mail

Published Monday, Nov. 15, 2010

A disabled woman who says she was called a “one-armed bandit” by her Dairy Queen co-workers and fired because of her disability has been awarded more than $36,000 by British Columbia’s Human Rights Tribunal.

Linda Vernon says while the money is certainly welcome, she hopes the case sets an important precedent for disabled workers who have been unjustly let go by their employers.

Ms. Vernon filed a complaint with the tribunal after she was fired from the fast-food restaurant in 100 Mile House, B.C., in May of 2009. Ms. Vernon alleged two of her co-workers not only ridiculed her, but also took steps to make her work more difficult.

She said the employees would deliberately close heavy lids on garbage containers while she was taking out the trash. Ms. Vernon also told the tribunal that sinks would purposely be left full of greasy cups and trays before her shift.

Heather MacNaughton, the tribunal member overseeing the case, said in her decision Monday that two of the employees – Michelle Brown and manager Kelly Brown – engaged in a “concerted effort to have Ms. Vernon resign from the Dairy Queen.”

“I find that they made her job more difficult by creating work that they knew she would find challenging,” Ms. MacNaughton said.

“I find that they did so because of her disability and their concern about her ability to perform all aspects of her job and to keep up with the upcoming summer demands on the Dairy Queen staff. I also accept that they referred to Ms. Vernon as a one-armed bandit.”

Ms. MacNaughton ordered Kelly Brown, operations supervisor Craig Slater and Howatt Enterprises – which operates the restaurant – to pay Ms. Vernon $21,060 in lost wages. They were also ordered to pay $15,000 for injury to Ms. Vernon’s dignity. Interest will be applied to both amounts.

Mr. Slater fired Ms. Vernon, though he was not accused of ridiculing her disability. Michelle Brown, though mentioned throughout the judgment, was not named as a respondent in the case.

In an interview Monday, Ms. Vernon said she was satisfied with the tribunal’s award.

“The whole thing was the principle of it and I’ve seen it happen to other people, how they’re treated if they have a disability, and [the employers] always seem to get away with it,” she said. “This time they didn’t.”

Ms. Vernon said she hasn’t been able to find work she was let go, and rumours about her have flown all over the community of 2,000 people in B.C.’s Southern Cariboo region. She said she’s thought about moving out of town and may do so now that she has money coming in, though much of the award will go to bills, and that she hopes her case is cited the next time a disabled employee is fired without cause. She had told the tribunal the comments by her co-workers caused her great distress because she was always proud of how she coped with her lifelong disability.

Mr. Slater testified he fired Ms. Vernon after getting complaints she took extended breaks and was stealing food. Ms. MacNaughton said in her ruling she had concerns about Mr. Slater’s credibility. A woman who answered the phone at the Dairy Queen in 100 Mile House said Mr. Slater was unavailable because he was on vacation.

A representative for Howatt Enterprises could not be reached.

http://www.theglobeandmail.com/news/national/british-columbia/disabled-woman-wins-36000-human-rights-case-after-being-fired/article1800338/

http://beta.images.theglobeandmail.com/archive/01009/Judgement_in_Human_1009665a.pdf

2010:

Better care homes, or better euthanasia?

By Rob Wipond, December 2010

Parliamentary committee members witness a dramatic confrontation over elder care.

Local MP Denise Savoie invited two representatives from the federal Parliamentary Committee on Palliative and Compassionate Care to hear Vancouver and Victoria speakers in November. Developing recommendations on elder care, assisted suicide and abuse, the committee’s half-day session before 40 people at James Bay New Horizons broke down in a bizarre, foreboding fashion.

Presenter Wanda Morris set an emotional tone. (A Right to Die Society advisor, her online bio reflects on the putting “gently to sleep” of “my sister’s beloved dog, Sparky.”) Morris advocated legalizing “merciful euthanasia under a physician’s supervision,” describing people suffering pain “like my bones are sticking through my skin.” Would we deny people the right to jump from the Twin Towers to escape the flames of 9/11? Our laws, she said, are a “devastating, odious form of tyranny.”

While Morris acknowledged that it was also important to improve our elder care system, in the meantime, she pleaded, people need another option.

“I object!” One elderly man cried, demanding to present an opposing viewpoint. Another similarly protested. But another wept in concord with Morris, describing emptying her mother’s lungs of fluid in her final days because “she couldn’t die her way.”

Savoie politely redirected the audience to the agenda.

Victoria Hospice’s director of research, Michael Downing, said he personally supported assisted suicide, but listed conditions to enable people to responsibly choose it: They have to be in an environment where their rights are upheld, and they feel comfortable, supported and respected amidst kindness and options.

Downing acknowledged assisted suicide can involve “occasional abuse and slippery slope issues.” Two European studies found many cases where patients hadn’t reasonably consented to their euthanizing. Like Morris, Downing felt elder care needs improvement but, meanwhile, assisted suicide could be a good option for some.

However, a menacing backdrop was gradually painted of irresponsible care providers in a gravely mismanaged system.

Economist Robert Evans argued that governments invoke the false threat of a “grey tsunami” of boomer retirees to cloak their own perilously poor management. Retiring boomers should generate only “one percent per capita per year health care cost increases,” he said. However, increases in BC in expensive diagnostic tests are making us spend alarmingly more per elderly patient. 

“What are the outcome differences?“ Evans asked, describing vast geographical variances in diagnostic practices, where more spending often doesn’t correlate to better care. A seminal US study, he explained, found, “The finest health care system in the world costs twice as much as the finest health care system in the world.”

Health care consultant Marcus Hollander promoted an integrated system with flexible, accessible supports for in-home and group home care, to divert the elderly from expensive institutions. Even though cuts to such programs caused a near-doubling of costs per elderly BC patient in the 90s, added Hollander, government continues promoting institutional and corporate approaches. “It’s really a set of values that underpin the system,” he suggested.

SFU gerontologist Gloria Gutman then explained that four to six percent of elderly in our communities experience abuse. In institutions, a US study found some 40 percent of care staff admitted committing physical or psychological abuse, from denying visiting rights to “chemical restraining.”

This grim assessment of health care professionals aggravated some audience members into again loudly protesting the “extremely biased,” “cherry-picked” euthanasia presenters. Again, Savoie deflected them.

Amanda Brown, a staff trainer and policy developer with the Vancouver Coastal Health Authority, expressed concern about how BC guardianship laws mandate health providers to perform investigation and support functions for elderly people who may be experiencing abuse. She said “elder abuse is not an admitting diagnosis,” and noted that abuse situations can be dangerous, and that there’s a dire lack of training, regulations, monitoring provisions, or best practices.

“We’re building an adult protection service from the ground up, with no new resources,” Brown said. “Yet no one else has the mandate, either.”

Unstoppably flushed now, one elderly protester marched frontwards. Philip Ney, retired psychiatrist and medical professor, recounted histories of mental patients being euthanized. “Can you trust the doctors?” he asked, tipping the formal politeness of the room over precipitously.

He donned a lab coat, pulled out a stethoscope and goblet, and began to act as the Greek doctor Hippocrates.

One parliamentarian left. The room began emptying. Some sat transfixed.

A “patient” emerged from the audience to drink Hippocrates’ elixir of healing…or poison? “It will ease your pain and give you rest.”

Savoie interrupted. Ney responded, “You want to get rid of me…”

The awkward struggle for control of the room became a powerful representation of the struggle between opposing positions to be heard and respected.

On one side: A push to form a merciful law for elderly assisted suicide. On the other: Dramatically increasing anxieties about a mismanaged, even abusive elder care system which would be instituting that law.

A volatile concoction, indeed.

And it also seemed an essential ingredient was missing. No one had even mentioned BC’s draconian Patients Property Act. Under this law, doctors can conduct a five-minute mental “examination,” declare people “incapable,” and then take away from them absolutely all control over every aspect of their lives—and deaths.

So if we intend to inscribe into law an elderly person’s inalienable right to assisted suicide, wouldn’t it be vital to simultaneously inscribe into law inalienable rights to a decent standard of care and reasonable spectrum of autonomy? Aren’t these legal rights essential to keep together, like key ingredients for a calming antidote?

I raised this with Downing. “A very interesting thought,” he replied.

The session’s tension dissipated in personal discussions.

Rob Wipond still hopes the BC Liberals will follow through on plans to replace the Patients Property Act.

http://www.focusonline.ca/?q=node/141

2011: Judge finds police officer grossly negligent in killing a BC man with a mental illness in 2004.

“In reviewing all of the circumstances of this case, I conclude that Constable Dukeshire was grossly negligent. When the pursuit of Mr. Camaso commenced, Constable Dukeshire was not involved in a dangerous activity. However, as soon as C…onstable Dukeshire removed his service revolver from its holster and aimed it at Mr. Camaso, he was involved in an activity where it is plain that the magnitude of the risks involved were such that more than ordinary care had to be taken. If more than ordinary care was not taken, a misstep or a mishap was likely to occur such that loss of life or serious injury would be almost inevitable. More than ordinary care was not taken. The loss of the life of Mr. Camaso resulted. I also find Saanich vicariously liable for the damages caused by Constable Dukeshire.”

2011: Government workers knew for years about potential danger at a Richmond foster home but failed to protect a troubled and mentally challenged teen from a predator who himself had been victim of horrific sex abuse in a government-run care facility.

2011: http://www.youtube.com/watch?feature=player_embedded&v=BpBOtBp3yuI

             http://www.youtube.com/watch?feature=player_embedded&v=IeduY3UFNMA

            http://www.youtube.com/watch?v=oJoqRAF6GuA&feature=player_embedded

2011: “Data obtained through a Freedom of Information request show nearly half of all seniors in long-term care in BC are being given antipsychotics like Risperdal, Zyprexa and Seroquel. That’s almost twice the average for the rest of Canada and amongst the highest rates found anywhere in the world. And even though Health Canada warns these drugs cause a doubling of death rates in the elderly, care workers admit they’re mainly being used as chemical restraints in the absence of adequate staffing and proper oversight.” http://www.focusonline.ca/?q=node%2F237

2011: http://www.rcybc.ca/Images/PDFs/Reports/Isolated%20and%20Invisible%20FINAL%20.pdf

2011: Medicare’s Orphans http://www.medicareforautismnow.org/the-film/medicares-orphans/

2011: http://civilrightsnow.ca/2012/01/vch-tells-gpc-residents-were-here-to-serve-you-eventhough-weve-neglected-you-for-decades/

2011: Regardless of whether or not one agrees with any of Moms on the Move’s goals everyone should read this because it gives a glimpse into the real world of BC voters with disabilities: nearly 600,000 Canadians who do not have a remedy for heir rights http://www.momsnetwork.ca/wp-content/uploads/2011/10/October-2011-Voices.pdf

May 2011 to Jan 2012: The Community Living BC Crisis: http://www.bcacl.org/CLBC-Crisis/Media

2012:

• The Ministry of Health does not require care staff to report information indicating seniors receiving…residential care services are being abused or neglected.
• The Ministry of Health does not require operators of facilities governed under the Hospital Act to report incidents of abuse and neglect of residents.
• The health authorities do not track the number of reports of abuse and neglect they have investigated or the number of support and assistance plans they have implemented in response to investigations of abuse and neglect.
• The Ministry of Health does not require service providers to notify the police of an incident of abuse or neglect that may constitute a criminal offence.
• The Ministry of Health does not require the health authorities to ensure that seniors who believe a placement they’ve been offered is inappropriate to have the opportunity to raise their concerns and have them considered.
• The Ministry of Health and health authorities’ residential care placement policies and practices do not incorporate seniors’ choices and preferences.
• The health authorities’ use of sections 22 and 37 of the Mental Health Act to involuntarily admit seniors to mental health facilities and then transfer them to residential care is done without clear provincial policy to ensure that the Mental Health Act is used as a last resort and that seniors are not unnecessarily deprived of their civil liberties.
• The Ministry of Health permits operators to restrain residents without consent in an emergency, but has not defined what constitutes an emergency.
• The Ministry of Health does not require operators whose staff administer medication to verify that informed consent has been obtained and is still valid before administering medication.
• The Ministry of Health has not established specific and legally binding procedures to guide the use of medications administered on an as-needed basis in all residential care facilities.
• The Ministry of Health has not established specific, legislated requirements that residential care facility operators have to meet when responding to complaints about the care they provide.
• It is unreasonable that medical health officers and their delegates, in non-emergency situations, have the authority to exempt residential care operators from the legal requirement to obtain consent before transferring a resident to another facility.
• Medical health officers and their delegates are not required to inform the Ministry of Health when they grant residential care operators an exemption from the requirements of the Community Care and Assisted Living Act or the Residential Care Regulation.
• It is unreasonable for health authorities to conduct mainly scheduled inspections, conduct them during regular business hours and base their evaluations and hazard ratings on those inspections because residential care facilities operate 24 hours a day, seven days a week.
• The Ministry of Health has not yet taken the required steps to ensure that reports of incidents of abuse by residents against other residents are included in the list of reportable incidents in the Residential Care Regulation.
• The health authorities have not taken adequate steps to ensure that all operators of residential care facilities report reportable incidents promptly and consistently.
• The Ministry of Health has not ensured that there is a full range of administrative penalties available to the health authorities to use in enforcing the requirements of the Community Care and Assisted Living Act.
• The Ministry of Health has not ensured that facilities governed by the Hospital Act are subject to the same range of enforcement measures as those that are licensed under the Community Care and Assisted Living Act. [our bold]

See The Best of Care Report Parts 1 & 2 http://www.bcombudsperson.ca/images/resources/reports/Public_Reports/public_report_no_46.pdf http://www.bcombudsperson.ca/images/pdf/seniors/Seniors_Report_Volume_1.pdf http://www.ombudsman.bc.ca/images/pdf/seniors/Seniors_Report_Volume_2.pdf

2012: http://www.chilliwacktimes.com/news/lawsuit+waiting+happen/6220541/story.html

“What is hateful…is not rebellion but the despotism which induces the rebellion; what is hateful are not rebels but men, who, having the enjoyment of power, do not discharge the duties of power; they are the men, who having the power to redress wrongs refuse to listen to the petitioners who are sent to them; they are the men who when they are asked for a loaf, give a stone.” –Wilfred Laurier, 1886

Voters and children with disabilities and their families have been buried alive under a mountain of stones.