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Adult Autism Residential Care: Close the Institutions But First Provide An Alternative

Posted May 31 2011 4:30am
My younger son Conor  is 15.  He is not a very high functioning, celebrity "autie" or "aspie".  My son actually has an Autistic Disorder with "profound developmental delays".   He is living a great life now, at home, with a Mom and Dad, who take incredible joy in his company and at school where he has been treated very well by school and district officials. His adult care prospects in New Brunswick though are grim and they are not getting any better as successive governments, Conservative and Liberal, have failed to face the realities of adult autism care. His prospects will remain grim until government and the powerful New Brunswick Association for Community Living face reality and fill the gap that exists for severely autistic adults in residential care ... the gap between inadequate group homes and life in a psychiatric hospital. 

New Brunswick has done very well in developing a leading model of early autism intervention service delivery.  My son's autism challenges have been well accommodated in school  although there is much improvement that could be made across the system as a whole especially in rural schools.  Not all New Brunswick autistic school children have received appropriate accommodation for their autism challenges. On the adult level New Brunswick has stood still, has twiddled its thumbs and done nothing to improve the adult autism residential care "system".

Conor is a great joy in our life but Conor's Autistic Disorder and  Intellectual Disability impose serious functional limitations on his ability to live and enjoy life to the fullest.   He is now 6 feet tall and growing.  Like his Dad at a much younger age he has a very powerful muscular physique.  With his serious challenges he will require, when his parents can not provide care because of old age or death, and for the rest of his life, full time, 24/7, adult residential care.  Currently in New Brunswick that usually means either a psychiatric hospital placement or placement in a home with staff who are not properly trained and without the security and expert supervision  his condition requires.  In some cases ad hoc arrangements such as placement in a hotel room or on the grounds of a correctional facility or export to another province or American state facility have been made.  The CBC in Autism services needed for N.B. adults spoke with New Brunswick autism expert Paul McDonnell
"What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists." ... In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community," he said.

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership. The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes. "The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff.

Canadian governments, including successive Conservative and Liberal governments here in New Brunswick, have failed to provide adequate, decent residential care for adults with autism disorders.  A couple of years ago I attended a meeting at the Campbellton psychiatric hospital in Northern New Brunswick.  A major question to be answered was whether the facility should remain open or be closed.  The answer was put to a vote and the answer was unanimous: the psychiatric hospital must remain open until real alternatives are developed and in place.  I was part of that unanimous decision. I do not want my son to live in a hospital but I know he is unlikely to receive adequate residential care in a New Brunswick group home. 
 In ' What happens if I'm not around?' mother of autistic teenager asks "   journalist Michael Tutton, as part of an excellent series reporting the inadequacies of adult care facing many adults with disabilities  in Canada,  reports his discussion with a spokeswoman for the British Columbia Association for Community Living, an advocacy group for people with disabilities

"Faith Bodnar, the executive director of the association, says it's ironic that the issue is unfolding in B.C. because it was a pioneer in promoting the shutdown of larger facilities for people with intellectual disabilities in the mid-1990s.It also created a network of new living arrangements in the community, such as home-sharing where people with intellectual disabilities share homes with caregivers who receive monthly funding.However, Bodnar says the association receives emails daily from parents who say the supports they need for their grown-up children aren't there."We are running a serious risk of people not having the supports to be safe in the services they have," says Bodnar."Our members are telling us that they're concerned that safety issues are developing."The situation in British Columbia is only ironic to those who have believed that the solution to helping seriously challenged adults with mental health and developmental disorders, including autism disorders, is to simply close institutions and place everyone in community settings without accommodating their disability based challenges.  There is in fact a need for some residential facilities for severely autistic adults  to bridge the gap between community group homes and psychiatric hospitals as noted by autism expert Paul McDonnell.  For those most severely affected a center, integrated in the community but providing the expert care, educational programs, recreational services and security that those most severely affected by autism require is badly needed. Such a center will probably be needed for Conor. Such a center is not on the immediate horizon in New Brunswick though where a  highly influential and extremist community inclusion philosophy prevents any discussion, analysis or developmental of alternatives to our current group home/psychiatric hospital system of adult autism residential care. 
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