Tuesday, May 18, 2010

Adult Autism Residential Care After the Institutions Close

Where do adults severely affected by autism disorders, and others living in institutional  residential facilities  go,  when the  institutions close? It is one of the questions being asked in Manitoba right now as that province ponders what to to with an aging residential institution, the Manitoba Development Centre in Portage la Prairie, pictured above. Its current residents are growing older and  the Centre's  population  is declining. Some of the residents are severely intellectually disabled for a variety of reasons including some persons with autism disorders. Some require constant care and a team of professionals and staff. Many people are outraged or frightened at the thought of their severely disabled autistic adult children living in such a facility but what is the real world alternative for the severely affected by autism disorders and intellectual disabilities?

This important story is covered by the Winnipeg Free Press in "A kind of home 'Close it,' say the lobbyists. But then what?".  The WFP derserves full credit for reporting this story in a balanced, objective manner.  The WFP reports that:

"There are 285 complicated cases at the Manitoba Developmental Centre, the sprawling campus surrounded by trees on the north side of Portage la Prairie. It’s home to people with severe intellectual and developmental disabilities caused by everything from a traumatic birth to severe autism.
Some are high-risk offenders prone to aggression or sexual crimes like exposing themselves or voyeurism or worse. Those people, mostly men, are kept on a locked ward.
Others are deaf and blind from childhood measles and many have physical disabilities — they’re confined to wheelchairs, they suffer debilitating muscle contractions that contort their bodies, they have seizures.
Most — about two thirds — have been largely abandoned by their families and are wards of the public trustee. They get no visitors."

That grim but realistic depiction of life for some persons with severe functional limitations is a future that awaits many of our children with Autistic Disorder and severe Intellectual Disability.  But what do we do about it? Do we close the institutions? If so, as the WFP asks, then what?

In Manitoba public consultation will begin this summer into the future of the MDC.  Presumably that discussion will include consideration of a new systemic approach to providing care, real world care, not ideological, feel good puffery, for those severely disabled including those severely affected by autism disorders.

It might be helpful if those participating in that discussion consider the following articles by Dr. Bernard Rimland, the now deceased hero to many parents of autistic children who  brought an end to the  very harmful "refrigerator mothers" theory of autism development:

"Startling new statistics indicate that the death rate for mentally retarded individuals in community settings is dramatically higher than the death rates for comparatively disabled individuals in institutional care."

2. Re-Open the Institutions - Advocates Reverse Stand as "Community" Tragedy Unfolds, Bernard Rimland Ph. D.
"It has quickly become apparent that the cure - closing the institutions - is often  worse than the disease.  ... Millions of Americans with these life-long handicaps are at risk for poor quality care , questionable and even criminal management practices by service provides, and lacklustre monitoring by public health and welfare agencies ... A disturbing pattern of abuse, neglect and fiscal mismanagement has emerged:... Employees at small, community based facilities are often under-trained, poorly paid and inadequately screened. ... Death can come quickly to those removed from institutions. Ten patients dies after being removed from the Porterville Development Centre into group homes. "Most were middle aged and lived most of their lives in state centers.".. Many medically fragile or behaviorally disordered clients are a danger to themselves and others when placed in group homes where staff training is inadequate, supervision is lax, and local doctors are ignorant about developmental disabilities. Such individuals need other options including institutions.  Rather than closing down the institutions we should update them, replacing the very expensive medical model of wards and white coats with with residential model in which residents live in home-like settings in which they are protected from, but not isolated from the outside world."

I recommend that the good people of Manitoba take a reality based approach to developing a residential care system for the most severely disabled.  I say this from the perspective of a severely disabled autistic 14 year old son.  I say this from the perspective of someone who has visited the regional hospital facilities at which some adult persons with autism have lived. I say this from the perspective of a lawyer who has represented some youths with Aspergers who have had legal problems arising from life in the group home.

I do not want my son to live out his days after I am gone in a psychiatric hospital ward but I don't  want him thrown into a group home where his security and care requirements will not be met. I hope the people of Manitoba ... and the people and government of New Brunswick .... develop modernized residential care systems for persons with autism disorders who are intellectually and otherwise disabled.  I hope that the system includes community group home  and institution options.... modernized institutional options as suggested by Bernard Rimland Ph. D. the man who did so much to help rid the world of a  harmful non-reality based ideology the refrigerator mothers theory of autism.

Let's replace our current systems of residential care placement for adults severely affected by autism and intellectual disabilities with a reality based, evidence based system which provides options for our adult autistic population including options that protect, in a humane way their care and security needs.


Claire said...

What you have written here is very important Harold. I have done more than one post on the closing of institutions in Ontario. Everyone went into community care...lives of the severely disabled were lost very soon after the moves. Also lost was the expertise of dozens of specialists...doctors, dentists, therapists, wheelchair technicians...on and on. Community care is good for higher functioning individuals...not so for the severely disabled. Yes, there were terrible things that went on, in the past, in institutions. They reflected attitudes of the times. It IS possible to create beautiful, well-run places that really care for their charges. I know one existed in Ontario, as the woman who works with my daughter right now was a worker and supervisor there for 10 years. We need both types of living for our challenged population, but certain voices drown out the realities in favour of idealism.

Stranded said...

Everywhere I look in the community people seem to be living in the now, arguing endlessly on the internet about this therapy and that.

We recently did a sort of goals review of where we want our child to be in 2, 5, 10 years. Fantasy world aside, when I sat and did a realistic expectations analysis based on his current trajectory, it is quite bleak.

It is one thing to be hopeful and think pleasant things about the future, but the reality is as you have put it. One day I will die, my husband will die and our child will most likely out live us.

I do not see any sympathetic relatives coming out of the woodwork to help him.

I do not see an independent future for him right now. He is very young, and we are doing everything we can, but I don't live in fantasy world.

In Toronto the dumping grounds for the developmentally disabled are nursing homes.

It is the most depressing thought but an all too likely inevitability for those who are not millionnaires.

Barry Hudson said...

In Ontario the nursing home scenario is an optimistic one – if there is no space the next stop is a psychiatric residence where (since the model is “in the community”) the residence is a home setting that can have sexual and violent offenders with mental health issues. A friend of ours has had her daughter on an autism specific residence waiting list for two years with another thirteen to go for a spot (essentially there is a fifteen year wait list for suitable housing, and this is an update from the last time I commented on the issue – its worse, a few months ago the “official” wait time was 12 – 13 years). She was advised, by her social worker to get on the wait list as soon as possible – her daughter is ten years old now. She is a single mother with nothing and has to plan for her daughter in this way. In her words “The most wonderful I will hear before I die is that my daughter has a home where she will be safe.”

Given the Wynberg decision here there is no responsibility for the government to do anything. Similar to when Mike Harris closed a large number of psychiatric beds for the severely mentally ill the increase of disabled that died on the streets of Toronto I doubt many will care.

This issue keeps me awake most nights.

emma said...

Hi Harold, first time commenting here.
It seems the quality of care and mortality rate is dependent on the resources available, not the building. I remember in the UK during the 1980's "care in the community" was a thinly disguised attempt to cut funding, it was a disaster.

Since then standards have changed and self directed care/support has made much progress (of course there are still problems, there always are, as there are within institutions, no point kidding ourselves).

Quality of care depends on the services provided, staff training, etc,etc. Services can be more individualized in smaller settings which is to the benefit of the people using those services. Institutions offer more "one size fits all" care, which I don't think is the best approach.

As a parent, I guess what would worry me about community care is continuity, who will be responsible for maintaining standards as time goes by, staff changes, needs of my son may change, etc. I think this is what may make it tempting to think institutions are a reasonable option as they seem more "permanent".

For me this is a moot point anyway as where I live (Greece) institutions haven't changed that much since Leros - "the Island of the Damned" and community care for people like my son(or anyone for that matter) doesn't exist.

However, it maybe worth your looking into something like "microboards", I do know this has worked very well for some families, including people with severe disabilities. Link below.


farmwifetwo said...

Love how Barry tossed out Harris... yet he's been gone for 8yrs and McGuinty is the one that dumped all the institution beds and made certain there wasn't enough resources in the communities.

I love how Liberal's brag about book balancing when all they do is download... so unless you are willing to pay MUCH more on your property taxes... you'd better start lobbying Mr "gotta have paid for daycare" - ie full time kindergarten - or a billion dollars in unnecessary spending that could have been spent on the disabled. Toss in the fact that McGuinty refused to pay them anymore when their contracts came up just before the last election... leaving all those people with temporary care and the horror of it splashed across the news until a few days before the election... geez... he gave them a few crumbs and they settled. They don't get paid nearly enough and the turnover is constant.

Also only a couple of weeks ago McGuinty has decided he will not regulate PSW's... Even after one is in court now locally for assaulting a senior in a residential facility. PSW's in any facility or homecare is the #1 person responsible for your care.

I've been told that community care locally is excellent - by those who have children in care - and our personal "care" to date I can't complain about either... they don't pay my FSW enough. My personal Comm Living is run by a board... which included stakeholder's - parents - with voting rights. What it'll be like in 10yrs... uncertain... but I can guarantee you, I will have a vote on that board.