Civil Rights Now! thinks George Pearson Centre, a 120 bed institution administered by the Vancouver Coastal Health Authority should be shut down completely. Civil Rights Now! has collected these anecdotes, newspaper articles, excepts from reports and tidbits about George Pearson Centre. The evidence shows that on balance Pearson does more harm than good.

The “I” in a few of the anecdotes is Paul Caune, Executive Director, Civil Rights Now! Bolding is Civil Rights Now! Please read everything carefully and make an evidence-based conclusion. Or as Groucho Marx once said, “Who you going to believe me or your own eyes?”

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

1977-1997: This is an except from an interview Civil Rights Now! did with a woman who prefers to be indentified as “Brenda”.

Brenda was moved to the George Pearson Centre in 1977.

Brenda was relieved to find her new location “a little bit easier” but she still struggled with the powerlessness of not being able to make decisions for herself. Even though Brenda was an adult with a functioning brain she was not involved in decisions regarding her care. Brenda was limited to one bath a week regardless of how many times she asked for more than just that one. She was also put in bed by 6pm, way before the time she went to sleep. The biggest indignity was the fact that three times a week she had what was termed as “BM Days” which were the days when she was left in bed, all day, where she was expected to have her bowel movements.

Now considering the food that she was fed her bowels weren’t exactly regular but the indignity of being told she could only have a bowel movements three days a week and on certain days was beyond her comprehension. Even at Woodlands, where Brenda hid in her room to keep from abuse, she was allowed to go on her own. Beyond the indignity of being told when she could have a bowel movement Brenda was kept in bed for three days each week regardless of when the bowel movement occurred; this in addition to a 6pm bedtime were once again ways of controlling the residents by keeping them confined to their rooms and on “BM Days” to their beds. Brenda “never had any control over any decisions” and she was once again a prisoner within the medical system.

One of the positives about the George Pearson Centre was that Brenda could go swimming but even that was limited and she was told when she could go. There were occasional trips outside the centre but it was just another example of Brenda “not being able to have a voice or make a decision in my own life” as the trips were with groups of people to places picked by staff and at the places (such as the PNE) they were to go exactly where the staff wanted with no chance of discussion as to where she wanted to go or what she wanted to do. “I wanted to make my own decisions and to go where I choose”.

As with Woodlands the George Pearson Centre was “boring there too” as beyond the trips and swimming she was left to wander the halls with not much to do. She was given a power wheelchair but she had nowhere to go. There was a stationary bike that she was able to use but like with the laps she did while swimming she was just going in circles without actually going anywhere.

When Brenda left Woodlands she had hoped for more, she had hoped for the possibility of a life and while Pearson was better in some regards it still was not the home she wanted.

The stress of Brenda living in a facility didn’t just affect her emotional and mental well being it affected her family. “My mum didn’t like it, she was wasn’t very happy when they put me in [GPC] and it was just too hard for her to deal with”.

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

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

45) 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: “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

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

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

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
http://proquest.umi.com/pqdweb?did=227357881&sid=1&Fmt=3&clientId=58962&RQT=309&VName=PQD

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

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: 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

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. [The readers should compared all the info in this file with this statement.]

“He said quite a few things about George Pearson that are simply untrue,” said Zanocco. [What Zanocco says here is simply untrue, as the info in this file proves.]

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,”[Please note I was physically abused by some of these staff a few months after I made this statement] 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.” [I ask the readers to decide based on the info in this file if this is a ‘evidence-based’ conclusion.]

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: 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: 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.”

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

2oo7: http://www.youtube.com/watch?v=xVxAgoQdG7A

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.]

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

2010: http://www.youtube.com/watch?v=bh-AGa3rB2c

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: 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

A collection of GPC residents’ stories: http://www.pearsonresidents.org/stories-index

2010: http://www.youtube.com/watch?v=S8irMzVeZss

2010: This document was given to Civil Rights Now!

The Ethical Imperative for Implementing the Eden Alternative Philosophy at George Pearson Centre

“Most thinking about clinical biomedical ethics has taken place within the context of acute care medicine (Collopy, Boyle, & Jennings, 1991). The nature and concerns of long-term care however, are profoundly different from those of acute care. For example, whereas acute care focuses primarily on discete physical programs, long-term care involves the “global” well-being of the resident, including emotional, spiritual, psychological and social well-being in addition to physical health. In long-term care, the resident is understood to exist within a web of valued relationships with family members, friends, and staff, relationships that may be supported and strengthened by encouraging inclusion in rather than exclusion from care…Care recipients most often have physical dependencies and/or suffer from dementing illness. In facility-based care, the experience of dependency is magnified by the sheer variety of ways in which the quality of a resident’s daily life is reliant upon facility staff…When we considered the fundamental differences between the experience and goals of acute care and those of long-term care, it became evident that the prevailing bioethical model, developed to reflect the values and obligations within acute care, was inadequate to address the ethical issues confronting staff working in long-term care.” (Footnote 1: Michelle Mathes, JoAnne Reifsynder, and Maureen Gibney. Relationship, Voice: Cornerstones for an Ethics of Long-Term. Ethics, Law, and Aging Review, Vol. 10, 2004)

Despite the existence of a number of policy guidelines (Footnote 2: These policies include: Partners in Care; Abuse, Neglect or Self Neglect of Adults; Preferences for Staff; Responding to Patient/Resident/Client and/or Family Request For Staff. ) and the adoption of the Eden philosophy (Footnote 3: The Eden Alternative “emphasizes person-directed supports and individual autonomy to the greatest extent possible, personal relationships and the connectedness between individuals, the inclusuion of naturalisti elements such as plants, animals, and children in the living environment and colloborative decision-making and responsibility” Fox N., Leadership Pathways to Culture Change in Long Term Care, 2007 ), Vancouver Coastal Health has failed to address the issues identified by George Pearson Centre residents in their desire for a residential care environment that promotes their personhood, and enables the relationships that give their lives meaning and dignity (Footnote 4: Envisioning Home: Participatory Action Research with George Pearson Centre  ).

The most common management and staff responses to specific proposals that the GPC Residents, individual residents or family members have made for changes to the care giving environment are that a) resources will not allow such a change, despite the fact that at the heart of all these proposals is a request for a shift in the culture of care that should not require and is not a request for more resources; and b) that staff will not accept the changes, suggesting that VCH policy is driven by the needs and desires of staff and not residents.

The GPC Residents Council and CARMA believe that the failure to achieve changes that advance the Eden philosophy at George Pearson Centre springs from a failure to adopt and apply an ethical framework for long term care.

In their framework for ethical decision making in long term care, Mathes et al. propose five key foundational commitments:

1. Preserve and promote the resident’s health.
2. Protect the resident’s safety.
3. Palliate the resident’s pain and suffering.
4. Practice respect and care for attributes of personhood.
5. Provide opportunity and support for continuation and completion of the resident’s life story.

 

In describing this foundation the authors state that: “An ethical long-term care decision is one that honors these commitments. The most ethical decision is one that honors the five commitments most fully, whether the subject matter of life-sustaining treatment or bathing. Thus, these commitments both describe the ethical nature and content of long-term care and provide a framework for making ethical care decisions.” (Footnote 5: Michelle Mathes et al. pages 6-7)

Although the first 3 commitments ar recogizabl to most clinicians, the last two incorporate the commitments that VCH has made through adoption of the Eden philosophy. Inherent in these two commitments (numbers 4 and 5) are Eden values of person directedness, relationship building and human connectedness.

The Eden philosophy gives direction for its implementation by prescribing a commitment to collaborative decision making, with decision making authority that is as close as possible to the people affected. This is intended to de-emmphasize top down bureaucratic approaches and rebalance power, while encouraging as many person centred solutions as possible.

Residents at George Pearson Centre report that: “there is a pervasive imbalance of power between staff and residents. Residents often feel powerles. Meaningful relationships between staff and residents are discouraged (with reprisals if the status quo is not followed) and the attitude of “them and us” prevails. Management pays lip service to fostering amicable, therapeutic relationships between residents and staff but their actions indicate otherwise.”

Here are some examples of residents’ recent experience:

A resident has special needs to get up into a wheelchair. New staff is trained to these needs during orientation but it takes practise to get it right. On a particular shift, the new staff that is assigned to this resident does not feel competent to get the resident up as they are not familiar enough with the special needs. The new staff member seeks assistance from a trained staff member who  refuses to assist. Management is approached and refuses to recognize that there is a problem. The resident has no option but to stay in bed.

A resident reports a staff member for unacceptable behaviour and/or substandard care and refuses to have that staff member provide for their care. The staff member is removed from caring for that resident for a long period of time. Then a management directive underlines that for staff assignment, every staff member must be able to be assigned to every resident. The reported staff member is reassigned to caring for that resident. The resident still does not want that particular staff member to care for them because the initial complaint was never resolved and their relationship is broken. No meaningful attempt has been made to repair the relationship (if it is still repairable). In light of this stituation the resident:

- gets very basic care without any conversation creating an atmosphere that is so hostile the resident often cannot eat because of the stress of the situation.

- often staff feel obligated to try to “fill in the gaps” so the resident gets all the care they need an deserve (which can impact their own resident assignment)

-  resident stays away from their ward until that particular staff member is off shift (when it is evening shift they wait until night shift comes on duty). This means that the resident risks being up in a wheelchair all night if no night shift staff can assist. However, the risk seems more bearable than working with the staff member.

A resident plans to host a function where family, residents and staff are invited to attend and plans to use the common area on the ward. The residents is told that the function cannot be held there because it will “distract” the staff. Staff is told they cannot help or attend. Since residents feel GPC is their home, the consensus was to hold the funstion in the common area, anyway. Staff did not participate because they feared consequences. Both residents and staff felt awkward and uncomfortable.

A resident, who is unable to get out of bed and has no family or friends who visit, receives occasional visits from a staff member during off duty hours. The visits stop when the staff member is cautioned by a supervisor that if there is a friendship between the staff member and the resident then the staff member will no longer be assigned to that particular ward. The resident learns of this and files a feedback (complaint) form. Pearson management replies that the supervisor’s instructions to the staff member are in keeping with VCH policy.

All of these reports and examples demonstrate failure to operate within an Eden based ethical framework.

It is our belief that Vancouver Coastal Health adopted the Eden philosophy without incorporating its principles into a colloborative ethical decision-making framework that can be applied at George Pearson Centre. The net effect of this failure is that staff and management at Pearson Centre are opperatingg within an ethical limbo and residents are feeling that respect for their personhood and their life history is not being consistently considered when decisions are every level are being made. There is ample evidence, as well, that colloborative decision making is not being practiced. (Footnote 6: The GPC Residents Council has presented a number of proposals to GPC management and staff that have been effectively ignored or stalled, for example Internal Move Guidelines, Mobility Guidelines, Eden Strategies.)

We request the [George Pearson Centre-G.F. Strong] Ethics Committee urgently review the progress of the implementation of the Eden alternative at George Pearson Centre and make recommendations that will ensure that the Eden commitments are incorporated into the decision-making at Pearson Centre.

GPC Resident Council

Community and Residens Mentors Association (CARMA)

November 2010

2011: http://www.youtube.com/watch?v=B-AII5rHKrY

2011: “We are proud of the accomplishments which have earned us this designation,” said Dr. David Ostrow, President and CEO of Vancouver Coastal Health. “It exemplifies what we hear from our patients and their families about the quality of our services, and that comes down to the people who provide those services. We are proud to be a top employer of a skilled and engaged workforce.”

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:

MINUTES

GPC RESIDENT COUNCIL MEETING

Tuesday November 8th, 2011

3:00pm Special Events Room

PRESENT:

Residents: 26 residents attended

CARMA: Taz (Chair), Heather, Shannon, Sarah

Guests: VCH CEO Dr. David Ostrow and VCH COO Mary Ackenhusen

 

CALL TO ORDER:  3:05pm

APPROVAL OF MINUTES: Approval of Minutes tabled

CORRESPONDENCE:  Tabled

 

BUSINESS:

Chair: Welcome to our guests. Please explain your roles in Vancouver Coastal Health.

Dr. Ostrow: Thank you. First I’ll give you an idea about the overall organization of Vancouver Coastal Health. We were formed in 2000 with a bill that set up all the health organizations in BC. When this bill was created, it amalgamated many different hospitals and health boards into basically 5 geographic boards and 1 provincial board; the provincial board being the Provincial Health Services Authority. They also created 3 health service delivery areas within that large board. One of them is the North Shore, up to Whistler, Sunshine Coast, Bella Bella and Bella Coola, one that is called Coastal, original name North Shore Coast Garibaldi. The others are Vancouver and Richmond. George Pearson fits within the Vancouver health service delivery area. But all of our facilities within our health service delivery areas deal with patients from the entire region and in fact in the case of George Pearson, the entire province.

Each of these health service delivery areas has a chief operating officer and Mary Ackenhusen is the COO for Vancouver; so she deals with the acute care hospitals, the acute care rehabilitation, residential care, the community care, etc, within the entire Vancouver sub-region. I’m responsible to a board; the board is appointed by the government. There are 6 board members, and I was here about 6 months ago with Chairman of the Board, Kip Woodward and we met with a whole bunch of folks and had some discussions. I remember at that time I promised to come back to one of these meetings.  So here we are.

Mary Ackenhusen: I’ve been in my position for about 18 months as the Chief Operating Officer for Vancouver. But prior that I was the COO for Coastal, (North Shore), which is actually where I originally started hearing about George Pearson Centre and some of the challenges; and that’s when I got to know Paul Caune. It was at that time that I visited Paul in his apartment because he was so proud of it in terms of what he’d been able to move into and how he wanted to make that available to others. About a year later, I took on this position.

My challenges are really making the balanced best decisions for the folks that live in Vancouver in particular; across the hospitals, across residential care, across special purpose places like George Pearson, mental health and all that. That’s the balance that I need to play. Certainly, residential care, both on the mental health side, special needs and seniors are a very important part of my portfolio. Something I’d like to start with, something that really David has brought to the organization in his leadership role, is what we talk about: People first.  I know from your comments and knowing what goes on here, you might say that we are not living that philosophy. It is something I believe in very strongly, as does David. So we’re really here to listen.

Although I’ve read a lot and heard a bit here and there and certainly have familiarity with issues here; I haven’t lived them like you have and I don’t have the ability to prioritize how to create the change you’re looking for without hearing from you. So a lot of what we’ll do today is just listening and trying to understand how we can start to make an impact on these very long standing issues.  I’ve read the reports starting back in 2000, which highlights some of the issues, which I believe we’re going to talk about today, so we’ve gone a number of years and haven’t made the impact that you’d like to see. Certainly it’s my job to try and create an environment that you feel is home-like. I totally confirm what you and CARMA have asked us to confirm, that this is your home and we should be supporting you as much as possible as if it is a home.  We doing our best and probably we have a lot of room for improvement; that’s what we’re here for.

Chair: Thank you. Our first prepared question is regarding the redevelopment of Pearson.

Diana: First, thank you and welcome to Resident Council. We understand VCH has the goal of maximizing fiscal results while ensuring the wishes of residents are respected.  Do we have your commitment that the pool will be rebuilt here? Do we have your commitment that the Community Gardens will be kept or rebuilt here? And do we have your commitment that you will maintain – or better yet expand – the highly valued services on this site, including physiotherapy, occupational therapy services, recreation and music therapy?

Dr. Ostrow: Those are really specific. What I am committed to doing is to have a full service facility here. I would definitely want to have the pool; the pool is considered an integral part of the activities here and the other services that you talked about. But I suspect that if you made a list there would be way more than the community garden and pool and occupational therapy. First, what we are trying to do is have consultation with your group about what is ideal. We think that you probably know more than we know about what is going on in the world; what the state of the art is and what are the best kinds of services. We want to learn what all of those things are and incorporate that into ultimately what George Pearson becomes. We’ve read all the reports and I think we saw one today going back to 1991 that talked about changes that hadn’t taken place 10 years earlier, so 1980. So we recognize that there are lots of issues that need to get resolved – we want to address as many of these as we possibly can. When we were here at the last meeting we heard a dichotomy – some folks saying we want you to do whatever you can to make this place a better home but heard other folks say they want to see alternatives; see the gradual less-hospital type settings and more community-type settings. To give you an idea – one of the things we want to do is move one of our community clinics here and that will, we think, profoundly improve some of the services that are available to people here. But again, we have lots of ‘what we want’ and haven’t got to the stage yet of trying to figure out how that would work in this kind of setting.

Mary: I think what you are saying is can we at least be guaranteed that we’ll have what we have now. I think that’s a given. I hope we can do better. There are a lot of players here, the City, the developer, ourselves.

Chair: So that is a commitment that you will work with the residents here to keep the community gardens, the pool and increase physiotherapy services.  Mary: At least the equivalent.

Diana: We are aware that some staff members have been attending meetings regarding redevelopment but residents haven’t been officially made aware of the content of those meetings. The result is lots of rumours, which is common here at Pearson. The rumours include that VCH already has plans for the future of this land.  Does VCH already have plans for this land? And more specifically, do we have your commitment that residents who consider Pearson their home will be able to stay on this site with appropriate housing and care?

Mary: In terms of planning that is already happening – there have been meetings at very high levels, like with the Ministry and with the City, just to see if we are all ready to start the redevelopment. And we are almost there. But as you can imagine, with all these bureaucracies involved we’re not able to do a press release yet. We expect to be able to do that in the next couple months. Realistically, residents will start to get involved in terms of coming to meetings in the spring. There are no meetings that you would want to be in that have happened at this point. Staff have not been involved, Marion has not been involved. Her boss has been involved minimally – it’s really been just David and I, so you haven’t missed anything.

Diana: So the rumours are just rumours?  Mary: Correct, nothing has been happening. You will be involved when we get down to what kind of buildings and how do they fit the needs you’d like to see.

Dr. Ostrow: Further to that, the kinds of things we are talking about are what would we have on this land: in addition to the residential care of Pearson, would we have a Dogwood-type residence? Would we have a community clinic such as along Main St. Would we have a partner- ship with an organization for other recreational facilities for the whole community, not just this community. What are the density kinds of issues? The city has changed the density rules because of the Canada Line and what does that mean? That’s the kind of thing we’re talking about. We are nowhere near talking about specifics or phasing of how we will start to do any kind of work.

Diana: I think residents are just worried they’ll be left out of the process.

Mary: Definitely not. You won’t be left out and there is the commitment, even as we look at all the things that could go on this land that the George Pearson residents will definitely stay on this property. Won’t be maybe the same building, might be some apartments and other types of residential care – whatever is appropriate for your needs.

Chair: And the residents will be involved from the beginning.  Dr. Ostrow: Yes.

Diana: Residents have formed a redevelopment committee but do not wish to spend time working hard if it is not to be seriously considered. Residents care not only about the kind of buildings that will be on this land but also on the quality of services that they will receive. Do we have your commitment that residents input will be truly considered?  We were invited to submit a budget proposal to enable us to participate in the planning process. Are you aware of this and do you support it?

Dr. Ostrow: You’ll definitely be involved, and you are right that there are really two things – the building and also the services, the culture, the substance, that are as important as the building. Those are things that we can start working on now, those don’t require buildings.  But realistically, as we start the real planning in next 3-6 months, where you will be involved, it is still 3-5 years down the road. It’s a long process just to get City approvals to agree what will be on the land will take at least a year.  You won’t see anything built in that year, just architects and City people talking. So it’s a long way away. So we need to start on some of the services and issues and how we can do better with what we have, now. I am aware that you’ve made your request through CARMA for support to facilitate the input of residents. We’ll look at that and we’ll make sure that happens, whether it’s through a grant to CARMA or through other means, but there is a commitment there that you will have proper input.  Diana: Thank you.

Chair: Next topic is the Eden Alternative at Pearson.

Rod: Thank you both for coming. I’ve lived here at Pearson for 23 years. About 8 years ago, Vancouver Coastal Health committed to the Eden Alternative philosophy for residential care facilities including Pearson. It makes good sense to do this in residential care. Pearson Residents have been committed to the Eden Alternative since the beginning but feel little progress has been made. We have compiled a list of the major barriers to Eden, as we see them, which Sarah will read out on our behalf.

Sarah:

1. GPC seems like a hospital and not like a home – its identity seems controlled by the medical model of Acute care not Community. For example, the loss of on-site Sterilization is still negatively affecting us.

2. Positive caring relationships between staff and residents are not the primary goal. Residents are told they cannot refuse a staff member and still receive assistance – even if they feel that staff member endangers their safety or they feel emotionally abused by that staff member.  There are many staff members working here who are inappropriate for a community oriented environment, who have negative attitudes and insist that this is a hospital and not a resident’s home. As far as we know, no matter how much residents complain, staff are never fired or moved from Pearson. We know these ‘bad apples’ affect the good staff, who, we believe, take sick days as a result of this stress.

3. There is no clear communication plan within GPC and most front-line staff and residents feel left out. There is a lack of community building, ignoring the fact that most residents and staff are long term members of this community, living and working side by side for years and years.

4. There is no GPC Committee committed to furthering the Eden Alternative. As far as we can tell, there are no efforts made to ensure current and new staff is committed to the Eden Alternative and making Pearson as home-like as possible. Other places who successfully implement the Eden Alternative have happier staff and therefore less trouble recruiting staff, less turnover and fewer sick days.

5. Challenging behaviours and alternative communication methods of residents pose a great challenge to our care staff.  Many care staff simply don’t know how to deal with the emotional suffering and psychological challenges of residents. A major barrier to Eden is that there are no clearly established methods here to determine how best to work with individual residents, nor is there sufficient training given to staff on this. There is a large time cost to staff in inefficiently dealing with some residents, which effects everyone on the ward. The cost to you at VCH must be huge – and would be solved by including psychological needs as part of care. Even when a resident moves from one ward to another, the hard-won successful methods of working with this resident is not always transferred.

In summary:

“One size fits all” policies do not work here. We are a community at Pearson – the same people live and work here and we can’t help but get to know each other. Not everyone is going to get along and the ‘everyone must work with everyone’ policy causes stress to residents and care staff.  And when something happens, everyone hears about it – or they hear some version of it. Every- one likes to have some control over their lives and living in fear of the unknown is a stressful and unhealthy way to live.

ROD: We think the Eden Alternative will benefit us all. This requires greater commitment and creativity on the part of management, to overcome these barriers. Will you make a strong public statement that VCH is committed to doing whatever it takes to implement the Eden Alternative at Pearson?

Mary: That is the crux of what I think is the issue I most wanted to address here, and maybe the biggest opportunity – but also the most difficult problem because it’s been going on for a decade or more. We didn’t used to call it Eden – that started in 2003 – but it’s been an issue throughout that it’s a hospital medical model and not a home-like environment. So yes, David and I are both committed that it should be a home-like environment and we agree it’s our job to come as close to that ideal as we can. From reading the reports, I wouldn’t say no progress has been made on the Eden concept, but I would say the easy stuff has been done, the garden, the Envisioning Home exercise – so now we are at the hard part, which is the people part. I appreciate how you have expressed that it is both sides – I strongly believe that you have to have staff who want to work here and feel valued before they can really do a good job in caring for you folks. I know you acknowledge there’s been some tough times you folks have been through, the staff-resident relationship isn’t always as positive as we’d like it and how do we deal with this. Different things have been tried since 2003 and we haven’t got what we wanted, so what is the right approach? How do we bring the right tools, the right person and the right process to start making that change. One of the things that I know has been discussed and I am open to doing, is the idea of reinstating the resident liaison position; but it goes back to who is that individual that has the ability to make a difference. David and I are here to support that individual, the process and CARMA in helping us make that difference. But we need to have a game plan here that we think will make the difference. And of course I’m interested in your thoughts on that.

Chair: Are we any closer to that game plan? Do you have a person in mind?

Dr. Ostrow: We don’t have a specific person in mind but we have the attributes of that person in mind; what kind of person we want. You want to create a home-like setting in a setting that is hugely different from a regular home. And so, there is the complicated setting that you are living in. That doesn’t mean we are not committed to doing that, it’s that if it were as simple as any other residential care facility, we would have done it already. Both Mary and I have spent a huge amount of time talking about it. When Mary says we absolutely believe in the concept of people first – what we mean is that our first and foremost goal is to serve you and help you in your lives. But we recognize that we can’t do that unless the people who work for us are happy and fulfilled and trained appropriately and doing what is best for them as well. We all have experiences going into a store where you have surly staff and miserable people working there and they don’t serve you very well and they don’t serve themselves. So we recognize that and we’re looking to try to find a way to develop that from the leadership level down in this organization. So we know what we need to do but haven’t quite found the exact way to do it yet.

Mary: I would also confirm that this is something that not only David and I believe in, but also Marion and her boss Linda also believe in. There are a lot of things to be done here and one manager clearly can’t do all the relationship building and manage the facility and try to make that difference. So we are thinking about how to bring that special individual and process in to start to work on what you are talking about, Rod.

Chair: Next topic is the recent increase in census at George Pearson Centre.

Pat: Welcome to Pearson. As you know, Pearson has increased to 123 residents and expect to go up to 125 – for now. No cap has been given. The effects on residents are becoming clear, which we would like to share with you. Residents are participating in training new staff almost daily, which is exhausting. New staff is unfamiliar with residents, rushed through training, and major mistakes are made. Residents feel crowded – some of those who have private rooms are losing them, and with that they are losing the space for the few personal items they have that make this feel like a home. Interpersonal conflicts are increasing as residents have no choice in sharing a room with incompatible roommates. The OT and PT departments are already stretched to the limit, and it is important to note that residents already dream of having more of these services available. Those who wish for more rehab can’t get it here. Other therapies such as TCM (traditional Chinese medicine) with proven benefits are not available here. Residents face sharing the same insufficient level of services with even more residents. What are you planning to do about the effects of the increased census?

Mary: Thanks for sharing what this really means for you as individuals; it gives me a good feel for what you are going through. These are one of these tough decisions that I had to make, in my responsibility for all the health services in Vancouver; I have the hospitals as well. So as you can probably guess, there is a trade off between the individual space you have as a resident of George Pearson versus the needs of others who need the same type of care. They are basically languishing without the rehab services that you enjoy  – in a hospital bed on a waitlist for George Pearson, which is increasing long. We don’t really know why it’s getting longer, why there are more folks with the needs that make them good candidates for Pearson, but there are. That’s why we’ve increased the census, it’s not something we wanted to do. Certainly if the need starts to drop down, we will decrease the census, but I don’t know how or when that would happen – just if. We have looked at everybody on the wait list and done scrutiny in terms of are there other places we could support these folks that are appropriate, other than putting more pressure on George Pearson. We haven taken a few people off the waitlist but it’s a difficult situation. I think the increase of 3 patients from 120 to 123 is a small percentage increase, though it seems that it’s another stretch on services. I understand that if you are not getting enough – that every single individual who is fighting for that same resource does make a difference. We’ll have to look at that if it continues to increase.

Dr. Ostrow: Just to add to that, we can’t add residential care beds in Vancouver, we’re not allowed to do that. What we’re trying to do is get people into the community faster and get their services in the community faster, even home rehabilitation-type services. So we’re doing everything we can to try to mitigate this, as Mary says, but we are faced with this problem of more demand than we have capacity.

Chair: So with the increased census, are the rehab services going to change at Pearson? Most people when they come to George Pearson Centre are under the impression that they’ll get full physiotherapy and occupational therapy and are disappointed when they get here. Murray has something to add to that.

Murray: I was speaking with the OT dept yesterday, they tell me they have half the staff they used to. There used to be one OT per ward, and now they have 2  ½ for all 5 wards. I was told that I would be able to get lots of rehab here so that is why I came.  My goal is to move back home with my family – I have two children.  Right now I go home one day a week and I’d like to go home more. But I can’t get support while I’m still here. So there’s no ability for transition.

Mary: What kind of support can you not get?  Murray: Nursing care at home. I need some support. I’d like to ask you to help us. With enough support  I and probably others, could move home and you would see some beds freed up.

Mary: I don’t know how many people here, with the right support, could live at home, but that is something we would support. I don’t know your individual case but I can ask and find out more and see what we can do to help. If home is where you want to be that’s where I want you to be.

Dr. Ostrow: When we talk about the planning of what the future will be, we anticipate not just what is here right now. We really do want to find ways to get folks into the community. Like Mary, I don’t know your individual case but we will definitely try to see what we can do to expedite that.  Murray: I would like to ask that we don’t wait until there’s a new Pearson to increase the services.  Dr. Ostrow and Mary: No.

Mary: I think part of the role of CARMA is to help do successful planning for how to get you home. If there are instances where more support from Vancouver Coastal would help you to actually make that transition home, in terms of home health, I’d like to hear about that because that is our goal for you. Obviously there’s limits to that, but if it’s reasonable and you are making progress. That’s the type of commitment we’re making.

Dr. Ostrow: And you’ve given us a way out in the sense that if we can move people more quickly into the community, as you want to go, we will have a space here, so we’re obviously motivated to do that. With appropriate supports of course.

Pat: One solution residents came up with is to propose that Ward 1 be used as a transition residential unit.  This would be for residents who want to live more independently and eventually move into the community.  Mary: I’ve never heard the idea, I like it. We’d love to look into it.

Mary:  Part of the longer term plan and its part of the development here too, is that we realize in Vancouver we need more specialized assistance type living apartments. They can be clustered, have supports close by so that one worker can maybe be shared among 3 or 4 people. This would provide the type of ongoing support that you require so that you could stay at home. There aren’t many of those apartments right now so that’s one of the limitations we are working on trying to solve. Certainly a good bit we hope will be solved in the redevelopment of these lands, but we don’t have to wait for that because these apartments can be in other parts of the city. So that’s the other thing that would not only help folks here who are trying to transition into the community, but it’s the other way we hope to put less pressure on the folks who live here. If we have that type of living situations then some of the people on the wait list for Pearson would have other options too. So that’s really the ideal, create those options for the folks that it will work for; it will be better for everyone.

Chair: Final topic on our Agenda today is thefts from residents.

Daniel: I’ve been living here about 4 years now. Before that I had a chance to live at GF Strong for awhile and also in the hospital. So I have some experiences to draw from. Coming to Pearson I encountered what I call a climate of impunity regarding incidences of theft that I heard were happening to the residents.

Residents here experience thefts rather regularly. And the surprising thing to me was that they accepted it as a regular happening. I feel that this is because there are no consequences when things are stolen, and staff refers to it as having ‘gone missing’, or been ‘misplaced’.  So I say there’s a culture of impunity, because the perpetrators seem to know that regardless of what happens, the police never come around here to investigate any thefts.   Most residents report that they need some staff assistance gaining access to their locked drawers.  I wanted to bring this to your attention. When I did report a theft, the RCC told me that nothing can be done, right off the bat. I was surprised. I had an item of value I left out overnight; it was gone in the morning. Well the other residents are in bed, so can’t you just look up who was working that night and ask them what they saw?  What will VCH do to prevent thefts and compensate residents whose belongings are stolen?

Dr. Ostrow: That is quite shocking. I didn’t realize we had so much theft going on here. That is a crime, it’s not things going missing, it is theft. I don’t know what could be done in terms of having police involved, but that is not tolerable to have thefts in acute care or here.  Thank you for telling me about it.  When you talk about security of person and security of possessions, those are really pretty important things in any kind of a home setting. We’ll have to do something, I promise I’ll work with Mary to get something suitable done about this. You are right it isn’t just about the physical storage, it’s also an issue of attitude.

Mary: It is really representative that the community has broken down. It should be the exception in a well run community, and you represent that it is not the exception. It’s really one of those indicators, just like sick time. When we look at whether staff are happy and engaged in workplace, we look at sick time and it usually correlates with how well-valued staff feel and how happy they are in their jobs. I’d say theft is probably another indicator that if people are valued and respect each other then theft should be few and far between and not on an ongoing basis. So it’s another indicator we have work to do.

Chair: So you will be addressing this? It is quite the epidemic.

Wayne M: They just laugh about, just shrug it off as no big deal.  I’ve lost money as well. Who do you report it to, there’s no one to report it to, if you try to get someone to help you call the police, it’s not possible. It’s just the way it is here.

Mary: I’m interested in hearing what the Resident Council has to say about all this.  Chair: The Resident Council can only do so much.  Mary: It’s a partnership, for sure; we need to work on it together.

Chair: We’re going to open the floor up. Any questions or comments?

Joy: I’m concerned about what’s going to be done about levels of staffing. I’m on Ward 2, and yesterday we were so short staffed that most people were not able to get up. They were short on both day shift and evening shift so there were just 5 people that got up in their chairs out of 22.  I believe part of the problem is we are admitting residents with  much more complex needs and the staffing ratio hasn’t changed. On Ward 2 we still have the same staffing level as when we moved up there 12 years ago. The higher level of acuity requires  more staff time.  But without an increase of at least one more staff member, the staff time is just taken away from other residents to give to those that require more. This is frustrating for the residents and very difficult for the staff as well.  We have some empty lines.  I’m wondering what can be done about this?

Dr. Ostrow: The first thing we have to do is get the appropriate staffing; we are committed to doing that.

Mary: We will fill those lines even if it takes overtime. I don’t know the background to this situation. The reason we can’t commit to saying no more residents until then, is that our job is to look at everyone all the way from the trauma victim coming into emergency at VGH but that bed is blocked because there is someone who needs to have a placement at Pearson or whatever.

The unfortunate job we have is to balance the needs of everybody in Vancouver. But certainly, I hear what you say and agree it’s not acceptable. We need to figure out what’s going on there ASAP, and we will. Linda is committed and Marion too, that’s our job.

Diana: I’m on Ward 5 and it’s the same thing, I’ve been there probably 2 years and I used to volunteer here about 10 years ago and there’s quite a difference. Lack of staff, more residents – since the census has risen the increase has been on Ward 5 and it’s not been fun living there with everybody not knowing what they are doing, who has who. We need more staff, more staff that is trained on the different needs of the residents that are coming in.

Mr. Moon: They want more residents but don’t seem to want to have any more staff.

Mary: I think we have increased staff, as the residents have increased – Linda perhaps you can speak on this?

Linda: There has been an increase in staff; I think we are at ??? to date.

Mary: I think what Linda is saying we increased staff for the 3 additional residents but we haven’t addressed the acuity increase, which are 2 different things.

Diana: I think residents feel that we afraid of losing the good staff because a lot of them are so tired. It’s the bad apples we want to get rid of, not the good staff. But they’re the ones who are getting stretched thin, because they’re the ones picking up after the others. And they are the ones we rely on, that we go running to when we have a need.

Mary: Thanks for the reminder.

Hansu: Thanks for being so straightforward and listening to what we say.  Mary: You are very welcome; don’t thank us until we make a difference.

Murray: I’ve been at other facilities and the staff here are excellent, there is just the odd one that you need to consider reallocating or whatever. We have fantastic staff, I see them working double shifts, 16 hours straight. One staff had a party at her house, staffing kept calling her, she didn’t want to take the call and cancel her event. If you could do something about the various shortfalls, and add a little bit of physio and occupational therapy it would really help this facility.

Dr. Ostrow: You’ve made some good suggestions and I think we’d like to hear even more specific ideas. Let’s be really frank, you’ve said there are some great staff and some not so great staff. We know it’s our job to try to do something about that, we would like to do that with you. We don’t want this to be an every 6 months complaining process, we want to see a difference and we are committed to doing that. I hope the next time we get together we’ll have positive things to talk about. So thank you.  Mary: Thank you on my behalf too.

Chair: So in terms of staying in touch and working together, how do you propose we do that?

Mary: We can come back in 3-6 months, I don’t know if it will be both of us or just me, but certainly we need to keep the conversation going and see if the things we are doing are making a difference.

Chair: There are refreshments in Cafeteria. I will now call the meeting to a close.

MEETING ADJOURNED

Feb26/2012 News 1130 report about GPC “Claims of ongoing theft at a local facility” http://www.news1130.com/news/local/article/334941–claims-of-ongoing-theft-at-local-care-facility

VANCOUVER (NEWS1130) – People living at a complex care facility in Vancouver are outraged over what they claim is an ongoing problem with theft.

About 120 people live at the 60-year-old George Pearson Centre. Dan Gladstone has been there since 2009, and says people in the building seem to report missing money and possessions every week.     “It became apparent to me that because of the timing of some of the thefts we weren’t simply dealing with random individuals walking in off the street in an unsecured building, but rather, systemic theft,” says Gladstone

He believes workers at the facility are responsible for at least some of the problem.

“When we look at some of the circumstances, the only people that would have had the opportunity would have been people in the employ here.”
Gladstone says he has had cash stolen from a locked drawer in his room, while taking a shower. He says others have had similar experiences, including one woman who won money during a casino outing.

“The care aid placed the $100 in a locked drawer on a Friday night, and Saturday morning when [the patient] woke up and went to get a $20 bill, her $100 was gone,” says Gladstone.

The aging facility houses adults and seniors in need of significant ongoing medical care and support. Vancouver Coastal Health wants to see a better facility built to cope with patients’ needs. The health authority’s president, David Ostrow, says Pearson was never meant to handle the complex care requirements of those now living there.

“People are getting their medications at the right time, and they’re getting suction and that sort of thing, but it’s way more than that when you’re actually living there, and so there I would say that care isn’t ideal,” Ostrow says.

He adds that patients at Pearson will be involved in planning for a potential new facility and care model, and says steps have already been taken to address their worries over theft.

“We’ve met with the patients, and their families, and their advocates about some of this,” he says. “We’ve made some changes to the staffing. We hope that will correct the measures.”

Ostrow says theft is an issue at every one of Vancouver Coastal’s long-term care organizations.

Back in 2009, a quadriplegic man living at the George Pearson Centre had a First Nation mask worth $10,000, stolen off the wall above his bed.