Tuesday, November 16, 2010

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.


Stranded said...

This atmosphere of denial is the biggest disservice to our children. But then denial of inevitability is man's biggest problem in general if you really ponder the subject.

Anonymous said...

Hi Harold,
just a message to say that i really appreciate the information, point of views and research you put in to your blog. Keep up the good fight. Your leadership is appreciated for those of us in this situation. Luc (Parent)

blogzilly said...

'denial of inevitability is man's biggest problem'...so VERY true...

And yeah...Harold, can't say the thought of what happens to my son, no matter what he actually has, doesn't cross my mind too.

James Bender said...

Hi Harold,
I enjoy reading your blog. I have a son with severe autsim and often wonder the same thing.Who is going to care for him when I and my partner are long gone?
Recently I decided that I would move from Ontario to NB...Point sapin....of course, there are no services there either. I wonder, when I am 70 if ill be able to manage this guy at all? Scares the hell out of me.

Anonymous said...

I live in Milton, GA and I have a moderately severe autistic 15 year old son. Unfortunately I did not hear about the Transitional Living public hearing till it had already been held. Where our son will go and who will care for him has become a weighty issue for my husband and myself. We are older parents and we love our son completely, but see that the day will come when we will no longer be able to care for him ourselves. The zoning was approved and hopefully this will be a viable place for him in the future.

Anonymous said...

More assisted living places need to be provided for the older autistic adults. They are human beings and require special attention. As parents age, it is impossible to care for them. Anyone who isn't in this position, should NOT have a vote.
Fight on PLEASE...

Jo said...

Where do servely autistic adults go to live in Alberta? I am the parent of a 21 year old male. I am not going to be able to care for him for the rest of my life. Group homes at not suitable for those who are unable to care for themselves. They need help with washing, bathing, feeding etc. and many have behavioral problems. All provinces need to address this problem now. There will be more like my son as the adults autism population is growing fast.

Unknown said...

On in Massachusetts I have a 4 yr old autistic sonHe is such a good. boy O am a little older for having a child this age. I am unsure what the future holds doe him. The thought of him suffering breaks my heart. I don't know what to do