Wednesday, June 22, 2011

CBC: New Brunswick Lacks Residential Care for Adults with Autism

Emma Smith and CBC did a feature (at minute 23:40)  on last evening's news on the lack of residential care available for New Brunswick adults with autism.  I was interviewed along with some other parents and staff from the Autism Connections Fredericton community autism centre.  Paul McDonnell, Ph. D., UNB Professor Emeritus (Psychology), clinical psychologist and mentor to many parents of autism children, was also interviewed.  

Paul McDonnell is the autism expert who helped educate many parents of newly diagnosed autistic children, including me, about the benefits of evidence based interventions for our children.  He really has been the intellectual force behind the progress that New Brunswick has made in early intervention and education of NB children and students with autism.  While the progress in early education in particular, and in our schools to a lesser extent, has been significant, no progress whatsoever has been made in developing an appropriate residential care system for New Brunswick adults with autism disorders.  Paul McDonnell talks about the need for a high end facility, one which would incorporate a variety of arrangements to accommodate adults from different points on the autism spectrum.  He also points out that as much as $500,000.00 a year is being spent to provide care for just 1 New Brunswick adult with autism ... at the Spurwink facility in Maine.  He points out it would make economic sense to design and construct a facility which could be designed to provide community integration here in New Brunswick. 

The struggle for improved autism services in NB has been taking place in a serious fashion over the last 12 years. During that time activist parents advocated, argued, struggled and fought for evidence based early intervention for autistic children.  We had some success, albeit not total success, in obtaining 20 hours of government funded intervention for autistic children aged 2-5.  Some gains have been made in our schools although much, much more effort is need there. No progress though has been made for adults with autism in New Brunswick. 

Government drags its feet on adult autistic care for a number of reasons.  In my experience as an autism advocate it is easier to get public attention for the need to help children then it is to attract their concern over autistic adults. It seems to be a natural inclination for people to be stirred more easily to help children than adults.  There is also the fact that once in the care of government autistic adults are out of the public eye. Out of sight, out of mind. The government can, and will, cite privacy reasons of the autistic adult as a reason for refusing to disclose information about them.  The most extreme examples of the privacy issue being used in this way is taking place right now in Ontario where that government has sent its lawyers in to action to prevent disclosure of information in the two inquests, including the Ashley Smith and G. A.  inquests.  In those cases the government is arguing against disclosure of information about what happened to these two youths, purportedly to protect their privacy,  even though they are now dead. 

In New Brunswick a huge obstacle to development of an autism specific residential care and treatment facility is the opposition of the very influential NB Association for Community Living.  Community living cliches are pulled out at every discussion of adult care issues. "No bricks and mortar" solutions is the cry of the community living advocates who believe that all problems are solved by dumping adults, including severely autistic adults, into privately owned group homes.  The powerful and influential people who subscribe to this ideology are well connected to cabinet ministers, the Human Rights Commission, the department of education, schools and school districts,  even the Ombudsman and Youth Advocates office. As long as we all go to bed at night repeating "community", "inclusion" and other cliches over and over again until we fall asleep all will be well.  But there will be no talk of "institutions' ... or any other facility that might be needed to help autistic adults.

No serious thought is given to providing the residential care and treatment that many with autism will require throughout their adult years. In fact active resistance emerges at events like the Ombudsman and Youth Advocate office's recent  Complex Needs consultations, in which I participated,  to any discussion of a facility that might provide the expertise, security and access to autism specific programs required by autistic adults.  

It is not cash that is preventing adequate residential care for autistic adults in New Brunswick. Huge sums are being sent to export our autistic adults to the United States. The "bricks and mortar" of buildings that might be necessary to provide residential care and treatment are not the problem either.  The real problem is the "bricks and mortar" that encases the thinking of the community living adherents who have subscribed to the same  ideology for decades and refused to consider the needs of severely autistic adults.  Their philosophy has ruled New Brunswick with an iron fist for decades even though the failure of that rigid philosophy is evidenced by the people with autism living on general hospital wards, in psychiatric institutions, in specialized facilities in Maine and other provinces, in hotel rooms and even on the grounds of youth correctional facilities. 

In truth we all want our children to remain as integrated as possible in our communities, as close as possible to our families.  As a parent though I know that talking about community and inclusion does not address the need of some autistic adults for expert care, for expert based continuing education and recreation opportunities and for security.  These requirements, for some, can not be provided in a small, privately owned group home. We need a facility close to autism expertise such as exists at UNB and at the Stan Cassidy Centre to provide appropriate life arrangements for our autistic loved ones as adults.   

The need is painfully obvious to parents who see their adult children sent to live in general hospital wards, psychiatric hospitals .... and facilities in another country.  New Brunswick needs to fill the gap between the inadequate group homes and hospital institutions and provide a modernized autism  facility to accommodate the needs of out adults with autism.  Here in Fredericton we have developed some behaviorally based autism expertise of note. It is time for the community living adherents who are so influential in our government institutions in New Brunswick to let go of their rigid and dated perspectives,  to loosen up and let the needs of autistic adults be addressed with modern evidence based solutions, with facilities that can provide security, expertise, education and recreation in as community integrated a manner as the circumstances served by those facilities  permit.  


Anonymous said...

I am sooooo happy that my email helped with this newscast! I hope you didn't mind me giving your name to Emma. Thank you Harold!!!!

Anonymous said...

Thank you very much for all the information you share. My daughter 7yr old is autistic and your blog is the first and only one I go to every day! Its always full of information for our area (nb). Once again thank you very much from myself and extended family.

farmwifetwo said...

McGuinty tossed money at children's mental health in the last budget. What it's for???? Who knows. I suspect it was b/c of these inquiries and before they come back with a "you need to spend more money" and they can say "but look, we did already". The waitlists for mental health are atrocious. Don't forget Ont elections are Oct... are you surprised the inquests have been pushed back??

Welcome to Ontario. Where we can spend 1.5 billion and counting on full time JrK and SrK but there's no money for anything else.

I have to ask my FSW again but my CL isn't part of the Canada/Ont wide one. We're members but I've never gone to meetings. That will change when my son becomes a teenager. Like the school system, I want to know exactly what is going on and the rules they play by.

Anonymous said...

I support your fight for adult care centres, I have a 12 year old son that is also severely affected by Autism. thank you on keeping this in the public eye, it is to all our benefits, but your argument to have it built in Fredericton is questionable.

Anonymous said...

What an awesome blog you have. Your son is blessed to have you as a father and advocate!

Anonymous said...

If only all parents of autistic adults had the courage and conviction of yourself, then maybe these adults could get more of the expertise support that some of them so need you are a shining light and inspiration to any support worker