June 18, 2011
By Victor Schwartzman
Paul Caune finally feels at home. It only took nine years.
Paul has Muscular Dystrophy. Being forced to move from his family home to a residence, because of the lack of services to the home, was tough enough. But it got worse after he had to be admitted to a hospital because of pneumonia. The pneumonia was cured but was replaced by a far worse disease: institutionalism.
His Health Authority refused to help him in his home community, starting a downwards spiral where Paul was forcibly “housed” in institutions. His experiences led him to become the Executive Director of Civil Rights Now! (www.civilrightsnow.ca):
British Columbian voters with disabilities do not get equal benefit and protection from the law as is guaranteed every individual by section 15 of Canada’s Charter of Rights and Freedoms. Civil Rights Now! is an all-volunteer, non-partisan, not for profit society with a single goal:
To get laws passed that gives Canada’s Charter of Rights and Freedoms real force in the daily lives of British Columbian voters with disabilities.
Paul has not felt much force from the Charter to date.
In the seventies, many governments appeared to accept arguments that the institutions created to serve people with disabilities instead often served up a service that was inefficient and immoral. What governments really accepted was that they could use the politics of community living to save money, replacing expensive big institutions with cheaper small ones. (In some cases, people with mental health challenges ended up in dingy rooming houses, and had no supports.)
Whether the “residence” was big or small, the organizational model changed little if at all: clients/consumers/patients/inmates continued to depend on good will instead of rights. When it came to housing people together, the sole issue considered appeared to be whether the client used a wheelchair.
Sensitivity often appeared nonexistent about mixing people with cognitive impairments with those who have physical health challenges.
Were and are people more independent in the smaller institutions? Not by much. At least, has abuse declined? It would appear no one can say, as there is no obvious evidence the information is being tracked. Complaints about the large institutions only really surfaced after those institutions were closed. In smaller residences where there is only a handful of staff, arguably complaints are even more unlikely–it is a recipe for secrecy, not openness.
Whether or not there is less abuse or better service, the last large institution in B.C. closed in 1996 and money has been “saved” ever since. A side benefit is that advocates have a much tougher time keeping track of many small institutions instead of a few large ones. But for those who live in the smaller institutions, the issues remain the same, as Paul experienced himself.
“We need to support people with disabilities in a way that protects their dignity,” Paul says. And how do we make that happen? “We need to separate personal care from housing. When you don’t control the money, the service provider has you. It is a monopoly situation. You have no leverage. Which is why we need individualized funding.
“Individualized funding is the Golden Rule in action: he who controls the gold makes the rules. Every government dollar allocated to support the needs of people with disabilities should go directly to the person who has the disability or the guardian. The money should not go to the service provider. You need portability in funding, so the person can pick the services best for him or her. What is best is when I have the ability to take that money anywhere I want to. Then I have leverage over the services I am receiving.”
Paul, like anyone, wants to live with privacy, control over his surroundings and dignity. Now he feels he finally has a home. He lives in one of seven apartments in a large, modern apartment block. The seven apartments were designed to accommodate people with disabilities. The other units in the block are privately owned condominiums.
Paul’s apartment is large, with lots of light. Big windows face an accessible balcony. Space was cut into an inside wall to create a window, so light flows through the apartment. Kitchen, shower and other facilities are all accessible. The kitchen counters are a nice marble, and the fridge is steel faced. Hallways don’t exist, to maximize space.
The seven apartments are run by the Vancouver Resource Society. Today the Society has units in eight residential buildings. Including the twenty homes the Society also runs, it provides housing and care services to some 170 clients.
Paul says that “the Vancouver Resource Society has been expanding since 1991. Its strategic vision is to own properties, to build up a housing group no one can control. This model gives the health authorities no choice but to fund the care. The health authorities claim they want to house people but there is no place to put them. That is because they are locked into a 1970’s model.”
Of the seven people in units, five share an onsite personal care aide. The units are not run as a group home separated into five rooms. Instead, each unit is autonomous. Paul has separate services during the day, for example, but does share the worker at night. “I don’t need a lot of assistance at night. But during the day, if I had to rely on a shared person, it would enormously limit when I can get up, get cleaned, go out, have people over.”
One reason why Paul believes it is important for the money for services to go directly to the client is because “History provides in B.C. you can’t rely on the effectiveness of the delegated regulators to enforce accountability on these contractors. People with disabilities don’t have a lot of time. Even though their life span has been increasing, they still have significantly shorter life spans. We don’t have a lot of time to fight a service provider to get better service.”
The current model Paul lives in enables him to negotiate services in a timely fashion. Of course, knowing the law and rules helps. For example, B.C. has the CSIL programme (Choice in Supports for Independent Living), which provides funding for adults to hire their own workers. Paul says the programme is badly underused.
“The health authorities don’t always tell people that CSIL exists. And if you know about CSIL, they may tell you that you are entitled to only two hours of service when you can get twenty-four.” Paul says that only 800 people participate in the Province wide programme because so few people even know about it. “Administrators in various health authorities, whether intending to or not, have been thwarting CSIL. For example, you can get it with no problem in one health authority, but it is not portable to another. You always have to go through a new pile of hoops.”
Paul says there are 670,000 people with disabilities in B.C., excluding seniors. A significant number of people dramatically improve their life situations if portability were created and CSIL widely publicized. “Imagine if 20,000 people had individualized funding! They would have a lot of leverage to improve things.”
Non-individualized funding comes down to having to accept whoever the health provider sends. With individualized funding, a person can decide what is in their own best interest. “I know what my needs are. I am an adult. I am entitled to people paying attention to the law. I don’t see how I benefit from B.C. laws which channel all that money to service providers. Service providers exist to meet my needs, not the other way around.
It is not in the public interest just to keep service providers going. We are here to provide services to people who are so called vulnerable. Let’s stop all the endless stakeholder meetings, stop the empowerment meetings, and just listen to people.”
But few listen without a lot of shouting. “It is a big taboo. People know how bad the large institutions were. They know how hard the move was. So they say, don’t rock the boat. People feel they have very few options.”
The current model provides genuine privacy for Paul and his family and friends. It is in a modern building in a good neighbourhood. “There is a high degree of security. I and my family can come and go as we please. We don’t have to arrange things because I am sharing the space. I can eat when I want, get the care I need when and how I want it, without in any way feeling under the thumb of an assistant. It is safer to live here than in a group home and especially institutions, where there is everything from superbugs to staff assaults.”
“This place I live in is genuinely a home. There is a lot of propaganda about making institutions a home, but essentially they are minimum security prisons. This is a genuine home. I’m safer, happier, cleaner and in the mainstream. That is what this support system makes possible.
“Most people in group homes, all people in institutions, they are in dangerous places outside of the mainstream of Canadian society. When people supposedly on my behalf designed models to support me, historically they always come up with a prison model. Whereas with individualized funding we have more innovative models, such as the one I am living in right now. Of course, one size does not fit all.”
“Publicity is given to high impact stuff like hip replacement wait lists. But people with ongoing disabilities as a group have no leverage. And the bureaucrats who control the money do not have the same priorities as voters with disabilities. It has never been a priority of BC’s government to ensure dignity for people with disabilities.”