Health Minister Michael Murphy
Social Development Minister Mary Schryer
Dear Honourable Ministers
Will New Brunswick Care for Autistic Adults?
I am the proud father of two terrific sons. The younger is a wonderful 12 year old boy with Autistic Disorder who is also assessed with profound developmental delays. When he was diagnosed with an autism disorder at age 2 there was very little in the way of autism specific services available in New Brunswick. Since then, with a cooperative effort by the Autism Society New Brunswick and governments led by both major political parties, there have been very substantial improvements in autism services in pre-school and school years but nothing has been done to improve the lives of autistic adults. Our current residential care and treatment system for autistic youth and adults simply does not meet the basic residential care and treatment needs of autistic adults.
We export some autistic adults to the United States. Just a few years ago an autistic youth, who had committed no offence, was housed by the province on the grounds of the Miramichi youth correctional facility while waiting for entry to the Spurwink treatment centre in Maine.
Parents in New Brunswick have expressed deep concerns about the fate of their youth and adult autistic children:
I would like to know what is wrong the government in Fredericton, they are putting all kinds of money in the fences to keep the moose off the roads, when they are a lot of children likes ours. What really burns me is my 30 year old son in the St.John hospital on floor 4 north and he doesn't belong there but the home that he has been in for the last 5 years will not have them any more because he is "Too hard to handle. I guess that maybe we the parents of these special people should go around with a petition and see how many people will sign it and maybe we should picket the government buildings and go to the media, then maybe these people will remember that we helped put them in office. Thank-You
“ I have a son who is 14 and severely autistic as well. I have had workers in my home with him for 2 years now. They told me it was supposed to be only until we could get him some help. He needs an assessment and a medication overhaul where he went completely out of hand and uncontrollable during puberty. No hospital in n.b can take him. Moncton refused him. I.W.K has been saying for the last year and a half they have no psychologist. I see a psychologist once every six weeks or so and we try something else. One of the medications made him bust through windows another gave him seizures. Right now we have between 10-15 restraints were the workers hold him for from 15-40 minutes of temper tantrums. He wears a helmet so he won't poke out his eyes. Hockey shoulder pads so he won’t bite his arm to shreds. He was bad when the workers first came with severe wounds up an down his arms but the hospital said it was no place for him, so we treated him at home. He also wears towels on his hands to prevent pinching and towels on his legs. My little boy is in crisis and we have no hospital that can even evaluate him. I have been waiting for help for 2 years, how much more can we wait. Sure they'll put him in a house if I can't stand it anymore but they would get him treatment.”
Whatever the causes and contributors to the rise in autism rates the most commonly accepted North American estimate today is that 1 in 150 people have an autism spectrum disorder. In New Brunswick we desperately need improvements in our group home system so that autism specific homes can be located in quiet safe, semi-rural areas near New Brunswick’s major population centres. It is critically important too that staff be trained to work with and understand autistic youths and adults.
What is most desperately needed is an institutonal level treatment and residential facility for the move severely autistic adults where autism specific expert medical and psychological care can be provided and where autistic adults can live a full and secure life. The community living movement of the past 30 years resulted in many gains for people with autism disorders and mental health issues in North America but it also resulted in the closing of institutions capable of providing expertise and security to those in most desperate need as Dr. Bernard Rimland noted in 1997:
Autism Research Review International, 1997, Vol. 11, No. 1, page 3
Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds
Bernard Rimland, Ph.D.
The road to hell is indeed paved with good intentions. For decades, institutions housing mentally retarded, autistic, and other behaviorally disabled persons have been under sharp attack. Spurred by revelations of deplorable, neglectful, and abusive conditions at some institutions, well-meaning advocates of the disabled have demanded the closing of all institutions. They insisted upon the resettlement of the residents in smaller group homes (and sometimes apartments), in what they euphemistically (and naively, as it turned out) call "the community."
As we observed several years ago in our editorial, "Community, My Foot!" (ARRI 5/3, 1991), "Community once implied human relatedness. Now it refers merely to an urban area. Let us not be misled by the warm, fuzzy feeling that the word 'community' is intended to instill. Let us not be misled by the feeling of abandonment and neglect that the word 'institution' has come to connote."
It has quickly become evident that the cure-closing the institutions-is often worse than the disease. A 1993 report by Congressman Ron Wyden noted that "the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies.
"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged. ......”
In New Brunswick the facts speak for themselves. We have to send our autistic youth and adults away because we do not have a secure environment in they can receive autism specific residentially based expert treatment. Simply placing people in a community location does not work in many cases. There is no need to revisit the decades old arguments about institutions fuelled by popular horror movies. Modern facilities exist which have moved away from those models and incorporate autism specific treatment and care expertise with family access and recreational opportunities.
A modernized facility providing autism specific expertise, security for residents and staff and decent recreational opportunities is desperately needed. If New Brunswick can answer this need it is, with respect, long past time that we started the process. If not Honourable Ministers I ask that you say so clearly and unambiguously to parents and caregivers of the severely autistic so that we can face our children’s future with a real understanding of the options that will, or will not, exist.
cc. Autism Society New Brunswick
Facing Autism in New Brunswick