Ontario and New Brunswick Both Need Adult Severe Autism Care Facilities
Where will our 16 year old son with severe autistic disorder and profound developmental delays live as we grow older and eventually die? That is the biggest question I face, the question that I have to keep out of my thoughts each day, as we try, as best we can, to help our son enjoy life while he is with us and in order to help him prepare, again as best we can, for the future. For me, the story of autistic 19 year old Toronto area teen Miles Kirsh told by Toronto Star Social Justice Reporter Laurie Monsebraaten in the article Frantic parents search for housing for severely autistic son is a story I understand very well.
As reported by Monsebraaten Miles Kirsh was diagnosed with autism at age 2. That is the same age our 16 year old son was diagnosed with autism. I suspect that Miles Kirsh's early age of diagnosis for that time period probably resulted, as was the case with our son, from the severity of his autism disorder and its related challenges:
"Miles was diagnosed with autism at age 2. His parents largely cared for him on their own until adolescence hit and the family could no longer manage the growing boy’s often self-injurious behaviour and insomnia. Just after Miles turned 16, Kirsh asked the network to find residential care for him.
When he was a teenager, she drove Miles from the family’s Thornhill home every day to another specialized school at Yonge and Eglinton.
But Miles’ dangerous behaviour in the car to and from school —banging against the window and grabbing the steering wheel — combined with mounting family expenses and his tendency to wander unattended, prompted Kirsh to reach out."
Our son Conor has, at times, engaged in almost identical behaviour to Miles Kirsh as reported in the Star. Our focus, to date, has not been on moving Conor out of our home. He has been a great joy for us notwithstanding the challenges he presents and I would guess the same to be true for Miles parents notwithstanding their separation from the stress of the severe autism challenges of their son.
The Star goes on to report the desperate need, in Toronto and across Ontario, for housing care for autistic adults. The Star could have easily added "and in New Brunswick" and it would have been very accurate.I have, both as an Autism Society New Brunswick representative and individually as Conor's dad, advocated over the past decade, without any measure of success, for the establishment of a severe autism adult care facility here in Fredericton near our autism expertise at UNB and at the Stan Cassidy Centre. We have a general group home system that lacks the ability to provide care for severely autistic adults who are left to reside in psychiatric hospital facilities.
The lack of government responsiveness to the need for adult autism facilities can be attributed generally to the financial challenges governments face. Here in New Brunswick though we face another obstacle, a non-elected unofficial branch of government, the New Brunswick Association for Community Living. The NBACL imposes its inclusion and community cliches on all public discussions and decision making processes necessary to arrive at real, evidence based solutions to the challenges facing the most severely affected by intellectual and developmental disorders. People like the autistic youth who was housed temporarily on a youth prison facility, people like the autistic adults who are sent out of the province, even out of the country to facilities like Spurwink in the State of Maine, people like those living in the psychiatric hospitals do not show up in the "feel good" PR activities of NBACL. Here in NB we receive incessant lectures about "community" and "inclusion" but we don't have a modern residential care and treatment facility that could provide care for adults with severe autistic disorders.
Professor emeritus (psychology) and practicing clinical psychologist Paul McDonnell has been a leading light in educating New Brunswick parents and officials about autism disorders and evidence based effective means of treating autism disorders. He provided his insight into what New Brunswick needs in a CBC online article Autism services needed for N.B. adults:
"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."
Miles Kirsh and his parents are facing a very uncertain future right now in Toronto. Where will he live? Where will he receive the care and treatment he needs? That uncertain future is very much a problem facing Conor Doherty and his parents too. Severely autistic adults in Ontario and New Brunswick all face very, very uncertain futures.
Does a Canadian society that brings criminal prosecutions against parents who do not provide proper care for their children not really care about some of those children, children with severe intellectual and developmental disorders, when they become adults? As a parent I can not accept that possibility, I have to believe that Canadians care, that our elected representatives care, and that we must continue to highlight the problems faced by adults with severe autism disorders and continue to advocate for long term care solutions. We have no choice.