Autism Disorders, Intellectual Disabilities and Institution Closings from Australia to Canada

Photo and caption from www.theage.com.au

 
It's all so simple.  Close the evil institutions.  Institutions evil.  "Community" good.

One flew over the cuckoo's nest?.  Burn down the cuckoo's nest.  Replace it with ... "community".  But what does "community" mean? 

Will the "community" provide an alternative residential facility which can  provide decent, secure living with any required treatment? Will family members of severely disabled persons with intellectual disabilities, autism disorders and other developmental disabilities be  confident in the community's  ability or willingness to provide a real, healthy and safe alternative for their loved ones residing in institutional care?.

In Australia the movement to close institutions continues as it does here in Canada but some caring  family members are fighting these ideologically driven closings.  In Relatives fight to keep centre for disabled open theage.com.au tells the story of Sandra and Noel Bates and their intellectually disabled 45 year old son Craig who resides in an institution scheduled for closure:

''The closure of institutions is ideologically driven,'' says Noel Bates, 77, president of the Colanda Parents and Friends Association. ''We're not pro institutions, we're pro better services for the disabled, including upgrading the facilities here. Colanda is 35 hectares of beautifully laid out parkland, a beautiful environment. It has newer facilities [than Kew Cottages had], better staff and processes.''

Mr Bates' son Craig, 45, suffers from Angelman's Syndrome and has, his father says, ''the intellect of an 18-month-old''. He suffers from seizures, cannot speak, or care for himself. He is unsteady on his feet and does not know his own strength when he reaches out to hug his mother, Sandra.

Although their doctors told the Bateses in 1966 to send their baby away and forget about him, they kept Craig at home until he was eight. After two years at Kew Cottages, he was admitted to Colanda the year it opened, 1976, and has lived there since.

''It was much, much better compared with what was available at Kew,'' says Mr Bates. ''It was an upmarket facility - it still is, for that matter.''

But despite Colanda's bucolic gardens, solid brick units and honourable reputation, many in the disability sector say it should be shut as soon as possible, and the residents integrated into the community, like the residents of Kew Cottages.

A 2008 report on Colanda for the Department of Human Services noted the relatives' satisfaction with the quality of care, but concluded that the routines of a large-scale institution restricted the residents' ''individual choices … and their quality of life''.

''They should close it yesterday,'' says Kevin Stone, executive office of the Victorian Advocacy League for Individuals with Disability.

''As far as I am concerned, it belongs in a previous age. The tragedy is that these are the people time forgot.''

The Colanda institution, where Craig Bates lives,  is targeted for closure even though family members are satisfied with the quality of life it provides their loved ones who live there.  The rhetoric of closure does not necessarily guarantee an alternative.  Family members of those who live within such facilities, people like Sandra and Noel Gates are motivated by concern for their family member not by rhetoric and ideology. They want to make sure that their son Craig has a decent place to live and that he will receive the care he needs. Community ideology and rhetoric does not provide the assurances they seek.

Here in New Brunswick, Canada I was one of a  group of community and government members who voted, unanimously,  at a meeting to discuss the future of an institutional facility in Campbellton New Brunswick, to keep the institution open.  I did not do so because I want my 15 year old son with autistic disorder and profound developmental delays to live out his days there after we could not provide his care.  I  voted to keep it open, as did the other representatives present, because there is currently no alternative for those severely affected by autism disorders, intellectual disabilities and other  disorders whose conditions do not permit them to live in our group homes.  "Community" cliches, rhetoric and ideology can help those who follow such scripts to feel good about themselves.  They don't provide real places for people with severe challenges to live and receive the care they need.

Close the institutions? Absolutely ... once  real and appropriate alternatives are available.

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Adult Autism Reality: Where Do Severely Autistic Adults Live After Their Parents Die?

Where do severely autistic adults live after their parents die?

It is a question that gnaws at many parents with severely disabled children. At the same time  attempts to find answers to that question are often met with protest and even hostility by other parents who fear and loathe the very concept of institutional care.  That tension appears to be present in a Milton Georgia where city council zoning change to permit development of a facility to provide assisted living care for autistic adults faced what 11alive.com  described as "ardent" opposition:

"A city council meeting Monday night became the center of a hot-button debate about the treatment of those with autism.


The Milton City Council approved the rezoning of a chunk of Deerfield Parkway to become a transitional facility for adults with autism -- including a vocational school for students more than 18 years of age and an assisted living facility called Watercolors Transition with 72 studios.


But it didn't come without ardent opposition from advocates and parents in the autism community, who spoke out against the project.


"It is ripe for abuse and neglect," said Rita Young, Director of Public Policy and Education for AADD, "and for the behaviors to really escalate."


Several parents said they found the idea counter-productive, essentially encouraging those with autism to turn away from the rest of the society. One added, "I find it offensive."


But Rick Swanson, the architect of the facility that would be among the first of its kind nationally, says the research he's done -- including numerous interviews with those in the autism community -- has found massive support for the project, some of which came from supporters in Milton Monday evening."

I participated a couple of weeks ago in a public consultation process being held by the office of the Ombudsman/Youth Advocate here in New Brunswick.  The question of where my  severely autistic son will live when I can no longer care for him, and after I am dead, was on my mind while I  attended  as a parent of an autistic child who has been active in autism advocacy in New Brunswick for over a decade.  The consultation was intended to gather public input on a centre for youth with complex needs. When the current, and highly respected,  Ombudsman/Youth Advocate spoke he quickly informed those present that the recommendations made by his office would not include a recommendation for a  residential institution. OK fine but where do youth with complex needs live if not in an institution?

The fact is that, at least here in New Brunswick, some youth with complex needs can not because of their specific challenges live with family or in group homes where the expertise to provide proper residential care and assistance does not exist.

Group homes in New Brunswick often lack the trained staff and professional expertise to provide for the needs of young people with severe autism and other disabilities.  For several years we have wrung our hands in this province over the issues surrounding residential care for youths and adults with autism disorders. But we have not developed a viable set of alternatives for autistic youth and we have not responded at all with new adult autism  residential care and treatment facilities.

I have visited the institutional facilities at Centracare and Dalhousie Regional Psychiatric Hospital.  I do not want my son with severe Autistic Disorder to live in those institutions after I die or become incapable of caring for him.  But what alternative will he face, where will he live, when I am dead?  We currently have severely autistic adults, like my son, living in psychiatric hospitals in New Brunswick, or shipped out of the province, even out of the country, because we have no realistic living and care alternatives available for them.

Feel good buzz words and cliches like "inclusion|" and "community" will not provide the care my son and other severely autistic adults need in order to live a decent life after I am dead.  My son will require residential care in a facility which provides for his physical security and his ability to enjoy life; with staff that have appropriate autism intervention training and access to professional assistance. Outside of the psychiatric hospitals no such facilities exist here in New Brunswick.

Close the institutions?  Yes, absolutely.   But only after appropriate alternatives are available to provide for the residential care and treatment needs of youth and adults with severe Autistic Disorder and other serious disorders and disabilities.  Feel good buzz words do not provide those alternatives.

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