GEORGE PEARSON CENTRE IS THE PROBLEM, NOT THE SOLUTION
By Paul Caune and Victor Schwartzman
George Pearson Centre residents on their “home”: ” The building is old and one problem crops up after another. Residents share bedrooms and bathrooms and few get any privacy — imagine having 30 roommates! It’s designed and run like a hospital — acute care style…which as you can imagine doesn’t merge well with basic human desires for independence, privacy and home.” –April 19, 2013 http://www.pearsonresidents.org/uncategorized/announcement
Life in GPC
Imagine living for the rest of your life where the government decides when you’ll have a bowel movement, watches you 24 hours a day and intimidates you into silence. This is life in 2012 for residents of the George Pearson Centre (GPC) http://www.vch.ca/402/7678/?site_id=70
GPC is a sixty-year old hospital for adults with disabilities inBritish Columbia. By its very nature, GPC harms the citizens forced to live in it. GPC should be torn down. Instead, the residents’ needs can be met by proven innovative community care.
Built in 1952 in Vancouver, at 700 West 57th Avenue, GPC was initially a sanatorium for people infected with Tuberculosis. It was named in honour of a former BC Minister of Health, George S. Pearsonhttp://en.wikipedia.org/wiki/George_Sharratt_Pearson Quickly GPC became the institution housing people suffering from complications from Polio who needed iron lungs. For nearly a decade, GPC provided a vital service to those two groups. Thankfully, within eight years, cures were discovered for both TB and Polio. Quickly enough the original purposes for GPC no longer existed.
A new purpose was found in 1965, when the B.C. Government shut down three decrepit homes for so-called “incurables” http://en.wikipedia.org/wiki/Marpole_Women’s_Auxiliary The residents were placed in GPC. Since then, all of B.C. has used Pearson as a warehouse for adults with serious disabilities. When in the early 1970s B.C. decided to liberate children and adults from B.C.’s degrading institutions such as the Woodlands School, for reasons unknown to us, GPC residents were not included. As a result, citizens can be forced to live in GPC for the rest of their lives. At its peak, Pearson was “home” to over 300 residents. Currently there are 126 residents, and the number is creeping slowly up. Since 2001, GPC has been run by the Vancouver Coastal Health Authority (VCH)http://www.vch.ca/home/
What is it like to live in GPC? According to a former resident who lived at GPC from 1955 to 1992:“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.” [Jeannette] 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.”–Vancouver Sun Jan 31, 1992
According to a former resident who lived at GPC from 1970 to 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 in a hotel.” [Our bold] –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
According to a former resident who live at GPC from 1977 to 1999: Barb Westfield was moved from Woodlands to the George Pearson Centre in 1977. Barb 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 Barb was an adult with a functioning brain she was not involved in decisions regarding her care. Barb 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. Even at Woodlands, where Barb hid in her room to keep from abuse, she was allowed to go on her own. Barb “never had any control over any decisions” and she was once again a prisoner within the medical system. [Our bold] –The quotations about Barb Westfield are from a Civil Rights Now! interview with her in 2010.
According to a person who lived in GPC for 12 days in 1991: “For that reason, Randy [Walter] entered Vancouver’s George Pearson Centre for a three-week stay in late August. He remained only 12 days. In a letter to [GPC], Evelyn Walter [Randy’s wife] 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.’ 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 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…’
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 was confused or forgot his medication…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.” [Our bold] –Vancouver Sun Nov 13, 1991
In 1992 Nancy Clay concluded after observing GPC: “The organizational learning espoused by B.C. Rehab’s [which ran GPC before VCH] 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. 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…A number of [GPC’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 withresidents…these examples in concert with numerous others may be indicative of a dominant culture explicitly opposed or passively resisting fundamental change.” [Our bold] – 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. https://circle.ubc.ca/bitstream/handle/2429/2264/ubc_1993_fall_clay_nancy.pdf?sequence=1
Plus ca change, plus c’est la meme chose
On November 8, 2011, two VCH executives, Dr. David Ostrow, the President and CEO, and Mary Ackenhusen, one of the Health Authority’s three Chief Operating Officers, met with twenty-six residents of GPC. Some of them have lived in Pearson for decades.
The minutes of the meeting can be read here http://civilrightsnow.ca/2012/01/vch-tells-gpc-residents-were-here-to-serve-you-eventhough-weve-neglected-you-for-decades/ The Pearson Residents Website can be read herehttp://www.pearsonresidents.org/
At the beginning of the meeting, Ms. Ackenhusen said: “Something I’d like to start with, something that really David has brought to the organization in his leadership role, is something we talk about: people first. I know from your comments and knowing what goes on here, you might say we are not living that philosophy.” For proof that, at least in regards to GPC, VCH doesn’t put people first read http://civilrightsnow.ca/2010/10/george-pearson-centre-isnt-a-prison-says-bcgeu-bs-says-the-evidence/ and below.
Ms. Ackenhusen went on to say: “Although I’ve read a lot [about Pearson] and heard a bit here and there and certainly have familiarity with issues here…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.” Ms. Ackenhusen did not say what specifically the issues were or why VCH hasn’t even started after a decade to make an “impact” on them.
VCH has controlled Pearson for a decade; during the meeting, however, Ms. Ackenhusen and Dr. Ostrow acted as if GPC has been administered for the last decade not by VCH but by some vague undefined force beyond anyone’s control.
There’s No Eden Alternative
The Eden Alternative philosophy was developed by Harvard-educated Dr. William Thomas. It is a way to make “long term care facilities” into genuine homes for their residents. One of the Ten Eden Principles is: “An Elder-centered community honors its Elders by de-emphasizing top-down bureaucratic authority, seeking instead to place the maximum possible decision-making authority into the hands of the Elders or into the hands of those closest to them.” For more on Eden, go to http://www.edenalt.org/
In 2003 VCH made a public commitment to make Pearson an Edensite. In November, 2010 the Pearson Residents Council stated that the VCH 2003 commitment to make Pearson an Eden Alternative philosophy site had been broken. “The GPC Residents Council…believe[s] 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.” A copy of the Residents Council 2010 statement can be read herehttp://civilrightsnow.ca/2011/05/were-in-a-prison-here-states-current-resident-of-george-pearson-centre/
A year later, during the November 8, 2011 meeting, the residents expressed the same very serious concerns, and provided specific examples. During the meeting one of the residents’ advocates stated, “Positive caring relationships between staff and residents are not the primary goal [of the management of Pearson]. Residents are told they cannot refuse a staff member and still receive assistance—even if they feel that the 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.” [Our bold]
“I wouldn’t say no progress has been made on the Edenconcept,” Ms. Ackenhusen replied. “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.” Ms. Ackenhusen was taking credit for improvements not made by VCH. “In 2009, the Farmers on 57th group, a project of the BC Coalition of People with Disabilities, began an agricultural project to transform one acre of the lush green space at George Pearson into community integrated gardens.”http://farmerson57th.wikispaces.com/
The Envisioning Home “exercise” Ms. Ackenhusen referenced was research done in 2006-2007 by a program of, again, not VCH but the B.C. Coalition of People with Disabilities (http://www.bccpd.bc.ca/ ) called the Community and Residents Mentor Association (CARMA). CARMA mentors residents of Pearson who want to escape from the institution. The Envisioning Home researchers simply asked the residents what they wanted Pearson to be—this in no way put into action any of the Eden Principles. For more on CARMA go tohttp://www.bccpd.bc.ca/ourwork/carma/default.htm
The research, which was based on interviews with 46 of the then-120 GPC residents, discovered that: “Residents 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’–it was the most vocal residents who had their needs or issues addressed. Residents also discussedtheir fear of negative consequences if they complained too much or made a fuss.”[Our bold] TheEnvisioning Home report can be read here http://www.bccpd.bc.ca/docs/envisionhome.pdf
Even after the report was given to it, VCH continued as recently as its October 20, 2010 Open Forum to assert: “We believe the care at Pearson is good.” Who made this assertion? Ms. Ackenhusen in response to a question asked by Paul Caune.
Dr. Ostrow said during the meeting, “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 with 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. We all have experiences going into a store where you have a surly staff and miserable people working there and they don’t serve you well and they don’t serve themselves well.”
This is a false analogy. If you go to a store and get crappy service you don’t go back. If you get crappy service at Pearson and survive, you get more of the same for the rest of your life. If VCH genuinely wanted to help citizens with disabilities with their lives they wouldn’t force them into Pearson.
A 2011 investigation by the Government of B.C. concluded that slightly over 50% of the residents in B.C.’s nursing homes are on anti-psychotics. Pearson is a nursing home, so it must be included in this statistic. This investigation can be read here http://www.health.gov.bc.ca/library/publications/year/2011/use-of-antipsychotic-drugs.pdf
The Government of B.C. stated in this report that it was unable to determine the extent to which front-line staff in nursing homes meet their legal obligation to get informed consent from residents or the residents’ legally-recognized medical decision makers. Are the Pearson front-line staff and doctors obeying the informed consent laws? The Government of B.C. doesn’t know.
The issue here is chemical restraint—using medications to sedate or punish patients for convenience or revenge. We do not known how many GPC residents are on anti-psychotic medications but do not have a mental illness or dementia. Apart from the ethical issues of sedating people to make them easier to manage, there are reasonable concerns based on rigorous research findings about the dangerous effects such drugs can have. (For a database on this subject go to http://www.madinamerica.com/2010/04/schizophrenia/ andhttp://www.madinamerica.com/2011/11/%ef%bb%bfearly-death-associated-with-antipsychotics/ )
Theft of Residents’ Property: “We’ll have to be a little more vigilant”
According RE:ACT, Recognize and Report, act on adult abuse and neglect, A manual For Vancouver Coastal Health Staff: “Financial abuse involves the improper, illegal or unauthorized use of a vulnerable adult’s resources for someone else’s benefit. It may include, but is not limited to…Theft (p 26)” and “When any [VCH] employee becomes aware of a situation of financial abuse and the alleged abuser is another employee, the report should be immediately directed to the manager responsible for that area of operations (p29).” http://www.vchreact.ca/attachments/react_manual.pdf
From the minutes of the November 8, 2011 meeting: “I’ve been living [in GPC] 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 [Residential Care Coordinator] 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.” [Our bold] Dr. Ostrow evidently doesn’t know that the crown agency he’s been the President and CEO of since March 2009 has already spoken to the issue of theft at GPC.
Theft at GPC had also been the subject of news reports. For example, in March, 2009 the Province newspaper and CTV news reported about a theft of a First Nations mask from above the bed of a sleeping resident on Ward 2. The CTV report can be seen herehttp://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20090316/bc_hospital_theft_090316/20090316/?hub=BritishColumbiaHome The Province article can be read herehttp://www2.canada.com/theprovince/news/story.html?id=b36b2e6c-c890-4864-b381-9650fea13b19
According to the March 17, 2009 Province report: [VCH] spokesman Gavin Wilson said the [George Pearson] centre, which is home to people with severe disabilities, may have had “petty thefts” over the years, but nothing of this scale, and he admits “we’ll have to be a little more vigilant…. We’re [VCH] certainly going to review policies and procedures,” Wilson said. [Our bold]
There “may” have been “petty” thefts over the years? During the twenty-one months Paul Caune lived at Pearson he was repeatedly warned by staff, advocates, residents and residents’ families to beware of theft. Paul on behalf of a Pearson resident reported to the Vancouver Police in 2009 the theft of money, a CD and chocolate from the resident’s wheel-chair when it was in the over-night battery-charging room of Ward 4. And in 2010 Paul met a woman with Locked-In Syndrome on Ward 2 who has had two IPods stolen from her, and how in desperation to prevent the theft of a third IPod, her husband chained it to her bedside counter.
In June 2010 VCH published the George Pearson Centre Resident and Family Handbook, page 8 of which states: “While we make every effort to assist you in caring for your belongings, [VCH] cannot assume responsibility for missing valuables. Although each room has a bedside table with a drawer that locks, we recommend that items of monetary or sentimental value be left in safekeeping with your family or in a safety deposit box.” [Our bold] The George Pearson Resident and Family Handbook can be read herehttp://vch.eduhealth.ca/PDFs/JB/JB.300.G46.pdf
From the minutes of the November 8, 2011 meeting, Ms. Ackenhusen said: “It [VCH employees stealing the property of Pearson residents] is really representative that the community has broken down. It should be the exception in a well run community, and you [a Pearson resident] 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.” [Our bold] [See this 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 ]
The population of Pearson, which used to be over 300 and had gone down to 120 a few years ago, is now up to 126. Residents claimed at the meeting that the effects of the population increase are “becoming clear”:
Residents have to train “new staff almost daily, which is exhausting. New staff are unfamiliar with residents, rushed through training, with the result that major mistakes inevitable.
Residents feel crowded—some of those who have private rooms are losing them, which means they are also losing the space for the few personal items they have. Interpersonal conflicts are increasing as residentshave no choice about sharing a room, including 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.” [Our bold]
The response from Ms. Ackenhusen was: “These are one of these tough decisions that I had to make, in my responsibility for all the health services inVancouver; 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.”
In other words: VCH will increase the overcrowding of Pearson indefinitely despite knowing it will diminish the quality of life of current long term Pearson residents. Ms. Ackenhusen gave no explanation for why VCH has allowed the situation to deteriorate so badly—if VCH did not want to increase the population of Pearson, why did it?
It was a few seconds after being informed by the experts, the people who actually live in Pearson, that because of over-crowding “the OT and PT departments [at Pearson] are already stretched to the limit…those who wish for more rehab can’t get it here” that Ms. Ackenhusen stated people on the waitlist for Pearson are “languishing [in hospitals] without the rehab services [Pearson residents] enjoy”.
Ms. Ackenhusen appeared to ignore that existing OT and PT services are inadequate, and that her comment about placing more people who needed OT and PT services into GPC therefore made no sense.
At the beginning of the November 8, 2011 meeting Ms. Ackenhusen asserted, “We [VCH] are doing our best.” What is VCH’s best?
- ·Provides 126 residents three meals a day/365 days a year.
- ·Provides shelter for 126 residents.
- ·Provides pretty good Christmas parties and summer BBQs for 126 residents.
- ·Gives 126 residents at least one bed bath per day/365 days a year.
- ·Not resolving issues, some of which are decades old.
- ·Breaking its commitment to make Pearson anEdensite.
- ·Pearson residents get a shower only once a week.
- ·Depending on the ward residents share one shower with 22 or more other residents.
- ·No resident has their own bathroom.
- ·Staff decide what the residents’ bowel routines will be.
- ·Most residents have one to three roommates; there is very little privacy.
- ·All residents are under 24/7 surveillance, as dictated by the medical model.
- ·Residents lose the person-with-disability pension of $700-900 a month because they live in a hospital, so their disposable income is reduced to $95.00 month. That $95.00 is all they have for a telephone, toiletries, transportation, entertainment, clothes, etc.
- ·Residents cannot get insurance against theft. Insurance companies say there is so much theft in long-term care facilities they won’t insure residents. VCH refuses to take responsibility for residents’ property which is stolen. Theft of residents’ property is widespread. (The Pearson Residents Council Chair of the November 18, 2011 meeting stated theft was an “epidemic.”)
- ·Voters with disabilities are forced into Pearson not because of medical need, but because of the lack throughout B.C. of affordable, accessible housing with the proper personal supports attached, and the Canadian lack of legislation similar to the 1990 Americans with Disabilities Act. (Except for the lack of an ADA-like law inCanada, the housing problems are the fault of all the Health Authorities, the relevant B.C. ministries and municipalities, and the decision of the federal government in the 1990s to stop funding affordable housing.)
- ·Residents are exposed to death or impairment from super bugs and medical error and other dangers related to the high density population. (See http://www.ecmaj.ca/content/170/11/1678.full &http://walrusmagazine.com/articles/2012.04-society-the-errors-of-their-ways/1/ &http://www.ctv.ca/CTVNews/WFive/20120330/ctv-w5-nursing-home-long-term-care-facility-risks-120331/ )
- ·Pearson mixes people who have cognitive impairments with people who have physical disabilities as if they had the same needs.
- ·No matter what harm a staff person causes a resident, no one ever seems to be fired. There seems to be no discipline of staff although staff routinely punish residents for not following the rules, written and unwritten. Residents have no choice which staff provides them personal care, even if they feel the staff in question is dangerous.
- ·Pearson residents are allowed out of bed once a day. If they go back to bed for whatever reason, staff will not get them up again that day from bed.
- ·The food is not horrible but it’s not great. The problem is your only choice is from A or B on the menu and your choices must be made two weeks in advance.
- ·Residents lose their civil right against unreasonable search and seizure because Pearson is the property of VCH. Residents’ rooms and property (but not themselves) can be searched at the discretion of Pearson managers by the private security guards on contract with VCH.
- ·Residents’ wheel-chairs, even if they own them, can be taken away and adjusted without their consent at the discretion of Pearson’s Occupational Therapists
- ·Residents in effect lose their General Practitioners because each ward has an attending physician. A resident’s own GP will not be given admitting privileges to Pearson.
- ·Residents are afraid to complain about the quality of care because of concerns about retaliation from management and staff on whom residents are dependent for every daily need.
- ·Diminishing the quality of life at Pearson by over-crowding and when asked to stop this, VCH replies it will increase the over-crowding for the indefinite future.
- ·Jest for Joy.
There’s No Right Without a Remedy
In 2012 the B.C. Ombudsperson concluded after a four year investigation into the province’s health care for seniors (this includes GPC):
- ·The Ministry of Health does not require care staff to report information indicating seniors receiving…residential care services are being abused or neglected.
- ·The Ministry of Health does not require operators of facilities governed under the Hospital Act to report incidents of abuse and neglect of residents.
- ·The health authorities do not track the number of reports of abuse and neglect they have investigated or the number of support and assistance plans they have implemented in response to investigations of abuse and neglect.
- ·The Ministry of Health does not require service providers to notify the police of an incident of abuse or neglect that may constitute a criminal offence.
- ·The Ministry of Health does not require the health authorities to ensure that seniors who believe a placement they’ve been offered is inappropriate to have the opportunity to raise their concerns and have them considered.
- ·The Ministry of Health and health authorities’ residential care placement policies and practices do notincorporate seniors’ choices and preferences.
- ·The health authorities’ use of sections 22 and 37 of the Mental Health Act to involuntarily admit seniors to mental health facilities and then transfer them to residential care is done without clear provincial policy to ensure that the Mental Health Act is used as a last resort and that seniors are not unnecessarily deprived of their civil liberties.
- ·The Ministry of Health permits operators to restrain residents without consent in an emergency, but has not defined what constitutes an emergency.
- ·The Ministry of Health does not require operators whose staff administer medication to verify that informed consent has been obtained and is still valid before administering medication.
- ·The Ministry of Health has not established specific and legally binding procedures to guide the use of medications administered on an as-needed basis in all residential care facilities.
- ·The Ministry of Health has not established specific, legislated requirements that residential care facility operators have to meet when responding to complaints about the care they provide.
- ·It is unreasonable that medical health officers and their delegates, in non-emergency situations, have the authority to exempt residential care operators from the legal requirement to obtain consent before transferring a resident to another facility.
- ·Medical health officers and their delegates are not required to inform the Ministry of Health when they grant residential care operators an exemption from the requirements of the Community Care and Assisted Living Act or the Residential Care Regulation.
- ·It is unreasonable for health authorities to conduct mainly scheduled inspections, conduct them during regular business hours and base their evaluations and hazard ratings on those inspections because residential care facilities operate 24 hours a day, seven days a week.
- ·The Ministry of Health has not yet taken the required steps to ensure that reports of incidents of abuse by residents against other residents are included in the list of reportable incidents in the Residential Care Regulation.
- ·The health authorities have not taken adequate steps to ensure that all operators of residential care facilities report reportable incidents promptly and consistently.
- ·The Ministry of Health has not ensured that there is a full range of administrative penalties available to the health authorities to use in enforcing the requirements of the Community Care and Assisted Living Act.
- ·The Ministry of Health has not ensured that facilities governed by the Hospital Act are subject to the same range of enforcement measures as those that are licensed under the Community Care and Assisted Living Act. [our bold]
See The Best of Care Report Parts 1 & 2http://www.bcombudsperson.ca/images/resources/reports/Public_Reports/public_report_no_46.pdfhttp://www.bcombudsperson.ca/images/pdf/seniors/Seniors_Report_Volume_1.pdfhttp://www.ombudsman.bc.ca/images/pdf/seniors/Seniors_Report_Volume_2.pdf
See Ombudsperson’s recommendations to VCH & VCH’s responsehttp://www.bcombudsperson.ca/images/pdf/seniors/VCHA_Regional_Profile_2012.pdfhttp://www.bcombudsperson.ca/images/pdf/seniors/VCHA_Additional_Response_2012.pdf
People Are Last At GPC
Dr. Ostrow stated during the November 8, 2011 meeting that “We’ve read all the reports, and I think we saw one today going back to 1991 that talked about changes which hadn’t taken place ten 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.” [Our bold] Dr. Ostrow is referring to issues VCH could have resolved anytime it wanted to. He could have made the changes himself. After all, he is the Chief Executive Officer of the organization which has absolute control of GPC. He tells the people on the receiving end of those unresolved issues that some have gone on thirty years and VCH “wants” to resolve some of them.
The “issues” are not secret. They have been described for decades in newspapers, independent reports, on YouTube (http://youtu.be/IeduY3UFNMA ), the recently released Best of Care report and even in (we now know due to Dr. Ostrow and Ms. Ackenhusen’s admissions) VCH’s own reports.
The evidence forces us to conclude the Vancouver Coastal Health Authority puts the voters with disabilities trapped in George Pearson Centre last.
Freedom and Dignity
The citizens trapped in George Pearson Centre will not get the freedom to protect their dignity if they remain trapped in an institutionalized service delivery model. The solution to the Pearson problem is innovative community care.
One proven example of innovative community care is the Foster Avenueapartments of the Vancouver Resource Society (VRS). VRS was founded by four voters with disabilities who escaped in the early-1970s from an institution called…George Pearson Centre. VRS gets apartments for voters with disabilities.
Paul Caune lives in one of VRS’ Foster apartments. “My disability has not changed from the time I was in Pearson from 2005 to 2007; I still use a ventilator. I live in the same city as Pearson and my care is funded by same Health Authority that controls it. Yet I have:
- ·Sole occupancy of a 700 square foot apartment.
- ·The apartment was designed for accessibility. There is an accessible washroom, shower and balcony. The design is open, with a lot of light.
- ·I have my own shower and bathroom.
- ·I have a full kitchen, including granite countertops, a gas stove and all the major appliances, including a washer and dryer.
- ·My rent is subsidized.
- ·I live in a market rate building with a variety of tenants. The building is in a good neighbourhood that includes private homes and convenient services.
- ·Because I do not live in Pearson I get the Person With Disabilities pension. I use part to pay my rent, the rest I spend at my discretion.
- ·I get to choose what I eat every day–it is all my choice.
- ·My friends and family come and go when we want.
- ·I come and go when I want.
- ·I get a shower every day.
- ·I can get out of bed more than once a day.
- ·When I was concerned about some workers being a danger to me, they were all removed from my teamthe very same day.
- ·I don’t have to share aides during the day. At night I share a worker with six other people.
- ·I decide who my family doctor is.
- ·In Pearson I had bladder infections and skin problems. I did not have those problems before Pearson and have not had them since.
- ·In Pearson I was physically abused. http://civilrightsnow.ca/2010/09/transcript-of-may-26-2010-bill-good-interview-with-civil-rights-now/ [The VCH employee who did this admitted she did so and apologized.] Here, I am free; I am not under the thumb of a system that VCH’s CEO admitted has had ‘unresolved issues’ for decades.”
Another example of innovative community care is the Provincial Respiratory Outreach Program. One of the justifications for keeping Pearson open is there has to be a place that meets the complex needs of people dependent on ventilators. Such people, so the argument goes, need the highly specialized staff which can only be found in a special institution. There is a twenty-two bed ward in Pearson just for people on ventilators. Citizens from all over B.C. are sent there.
There are two things wrong with this argument:
1. VCH’s extended care facilities, other than Pearson, refuse to admit anyone who has a tracheotomy and anyone who is a ventilator user. So by default such citizens are forced out of their communities into Pearson.
2. The evidence is overwhelming that people dependant on ventilators can live in their own homes, with the proper supports.
The Provincial Respiratory Outreach Program (PROP) is a service of the B.C. Association for Individualized Technology and Supports for People with Disabilities (BCITS) . PROP is dedicated to enabling people who need assisted ventilation to meet their respiratory needs while living in the communityhttp://www.bcits.org/aboutus/prop.htm PROP has 107 clients who are ventilator users who live in their own homes all across B.C. As stated above, Pearson supports only twenty-two ventilator users.
Tear GPC Down
“Our traditional approach had led us to see things as we expected them to be, instead of how they really were. Rules and regulations had been imposed on residents and staff without including them in the decision-making and past successes had led us to believe that this approach was the best and only way. We knew this was wrong and had to admit it…The fears of the general public and the negative view of institutional care, in many cases, were true more often than not. [our bold]” –“Burquitlam Lions Care Centre: Changing a Culture” by Renee Danylczuk, The Road to Eden North: How Five Canadian Long-Term Facilities Became Eden Alternatives (2004), p25-26 (“Renee Danylczk is the Administrator of the Burquitlam Lions Care Centre of Coquitlam, British Columbia.” p vi)
Pearson, like all institutions, will never provide services to its residents in a way that does not harm them. Pearson residents do not have the freedom to protect their dignity guaranteed them by the Charter of Rights and Freedomsand the Convention on the Rights of Persons with Disabilities. The B.C. Ombudsperson’s recently completed four-year investigation has concluded that those trapped in facilities such as Pearson have essentially no protection from abuse.
“From the 18th and 19th century onwards, the main framework for formal services was to provide support by placing persons with disabilities in institutions. Until the 1960s people with intellectual impairments, mental health conditions, and physical and sensory impairments usually lived in segregated residential institutions in developed countries …Although it was once thought humane to meet the needs of people with disabilities in asylums, colonies, or residential institutions, these services have been widely criticized. Lack of autonomy, segregation from the wider community, and even human rights abuses are widely reported. People with disabilities worldwidehave been demanding community-based services that offer greater freedom and participation. They have also promoted supportive relationships that allow them to exercise more control over their lives and to live in the community. [Our bold]” –WHO/World Bank 2011 Report on Disability, p145,http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf
“Research indicates that placing elderly or disabled persons in an
institution where they become passive recipients of care, often results in
rapid mental and physical deterioration which may jeopardize quality of
life.”–Vancouver Coastal Health, DESIGN GUIDELINES, Complex Residential Care Developments, June 6/2007 [p.11]
Institutions by their very nature harm those trapped in them. It is not legitimate in a free and democratic society to solve the problem of a citizen who needs personal care by putting him or her into a dangerous institution. GPC should be torn down, as have been most of the similar institutions in B.C., the rest of Canada, the U.S.A., Australia, the U. K. and Ireland. (See this Canadian News report on the Government of Saskatchewan’s recent announcement to close one of the last giant institutions in Canada for voters with disabilitieshttp://www.globalnews.ca/health/saskatchewan+to+close+one+of+last+remaining+institutions+for+mentally+disabled/6442588837/story.html)
VCH stated in the May 17/2012 Vancouver Courier (our comments in [square brackets] and our bold): Anna Marie D’Angelo, senior media relations officer at Vancouver Coastal Health, said the health authority recognizes the facility [George Pearson Centre] is not meeting the needs of patients and should be replaced…
For now, [GPC Manager Romilda] Ang said she hopes the next 10 years will bring more holistic care for the residents and a more home-like environment.
“I think right now we do a wonderful job with their physical and medical needs[ the evidence in this essay proves that assertion is false], but I’m not so sure we’re there yet in terms of meeting their psychological or their social or their emotional and spiritual needs,” said Ang. “I’d like to see a place where residents feel really supported in all aspects of their needs.”
Instead of GPC, the needs of the citizens it is currently “serving” should be met by community-based care. The City of Vancouver should only approve redevelopments for the Cambie corridor, which includes the Pearson property, that include at least 200 truly accessible, affordable units for adults with disabilities. The City of Vancouver should under no circumstances permit VCH to build a “new, improved” Pearson on that property. In addition, VCH must publicly commit to allocate the resources to make possible the necessary community care and personal supports for the future residents of such units.
Hope is not a plan.
George Pearson Centre is the problem, not the solution.
“The George Pearson Centre facility is an outdated institutional building. The physical facility’s infrastructure is aging and some mechanical and electrical systems cannot be upgraded to provide needed capacity. The ward-style accommodation does not provide appropriate privacy or independence for the residents who currently reside there.”
SOURCE: Pearson Dogwood Redevelopment Report, Lower Mainland Facilities Management, Jan 2013
“The George Pearson Centre was constructed in 1952 and provides residential care to over 100 residents with severe disabilities such as brain injuries, spinal cord injuries and multiple sclerosis. The facility is aging and some mechanical and electrical systems cannot be upgraded to meet capacity. The ward-style accommodation also does not meet the privacy or independence needs of current residents.” [our bold]
SOURCE: BC Ministry of Health News Release; April 11, 2013http://www.vch.ca/about_us/news/media_contacts/news_releases/2013-news-releases/planning-underway-for-a-new-mixed-use-community-in-vancouver
Paul Caune is the Executive Director of Civil Rights Now! He lived in George Pearson Centre, Ward 2, from December 2005 to September 2007.
Victor Schwartzman is a retired human rights officer.