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:
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.
"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."
"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.
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