Wednesday, January 25, 2012

Millions for Woodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question

Second from Left, NB Premier and Woodstock MLA David Alward 

On January 4 2012 I emailed New Brunswick Premier David Alward and relevant cabinet ministers the following inquiry which asked simply whether his government was considering helping autistic adults and is working on a modern, reality based model. I also asked if such an undertaking was not being considered to please say so straight up. 
Health Minister Madeleine Dub√©'s office was the only one to acknowledge receipt of my email.  I have received no substantive response to my question or concerns to date from Premier Alward or any of the relevant Ministers. The question itself requires no research, no public consultations.  It is a simple information request.  The question of adult autism residential care has haunted parents of severely autistic children in New Brunswick for many years. It was probably expecting too much to receive a prompt answer to a direct question. 
In the meantime though 8 million dollars of federal and provincial dollars are being poured into upgrading a civic center in the Town of Woodstock in Premier Alward's riding.  No time to answer a simple question about adult autism care in New Brunswick but lots of time and money for a civic center in Woodstock.  I absolutely do not begrudge the good people of Woodstock an upgrade to their recreational and community center but a few minutes to answer a simple question about adult autism care does not seem unreasonable either. Maybe I should have used an old fashioned letter for my inquiry and mailed it with a Woodstock P.O. Box return address? 

January 4 2012

Dear Honourable Premier, Honourable Ministers
and Respected Recipients

Re: Adult Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need

I am the father of a 16 year old son with severe Autistic Disorder and "profound developmental" delays. He is now 6'1" with the strong, solid physique his father once had in younger days. At some point in the future I will be too frail to provide the care he requires and ultimately will of course no longer be available at all to help him. I began my involvement in autism advocacy in New Brunswick approximately 13 years ago. Along with other determined parents I fought hard, very hard, for early evidence based intervention for autistic preschoolers and for the means to deliver those interventions. I advocated strenuously for autism specific trained education assistants, teachers and resource teachers. Some success has been enjoyed because of the efforts of parents of autism in the area of preschool and school services. New Brunswick has even been cited as a model from which American authorities could learn by the Association for Science in Autism Treatment. The same can not be said, at all, when it comes to adult residential care and treatment

I also advocated for adjustments to the total inclusion education model in our schools. My son's self inflicted bite marks on his hands and wrists declined and disappeared entirely once removed from the mainstream classroom where he was overstimulated, overwhelmed, frustrated and learning nothing because of his serious autism deficits. I have been a determined opponent of the excessive dominance in our schools and facilities of rigid, ideologically based inclusion and community models. This mindset discriminates against severely autistic persons by failing to accommodate their real needs. Our children have, at times, been sacrificed to the vanity of a community movement which can not adjust to differing needs, experiences and expertise. I participated in regular disability committee meetings held by the Department of Education until they were disbanded, the MacKay review and the Ministerial Committe on Inclusive Education. Believe me or not but many teachers and teacher representatives have told me in confidence that they shared my aversion to the rigid inclusion model which has caused considerable suffering to some children and has disrupted the education of others unnecessarily. My son has been accommodated because of my advocacy and because educators who dealt directly with my son were conscientious, could see what he needed and acted in good faith to help him. I know that not all severely autistic children have been as fortunate.

Nowhere has the insistence on an inflexible and non evidence based inclusion model hurt autistic children and adults more though than in the area of residential care and treatment as they move from childhood to adolescence and ultimately adulthood. What awaits is a model which includes a belief in "community" backed up by group homes with untrained, underpaid staffers at one end of a spectrum of care. At the other end of that spectrum is the regional psychiatric care hospital in Campbellton. In between the two ends is a huge gap. What is need is at least one centrally located permanent residential care and treatment facility for severely autistic adults. Such a facility could be modernized and based on existing models in the world. It could include the professional assistance needed to provide care for severely autistic adults in a setting designed to provide them with a decent life, with continuing education and recreation opportunities. The facility should be based in Fredericton, not because I live here but because Fredericton is where our evidence based autism interventions and facilities began and grew. It is centrally located and it has a naturalistic environment with many woodlands, trails, parks and outdoor areas together with indoor recreational and entertainment facilities.

I realize the current economic realities in NB, in Canada and the world work against any consideration of the type of facility that is needed. But economic realities always weigh in and have done so over the last decade that I have been involved with trying to advocate for a reality based, evidence based residential facility for autistic adults in need of a permanent home when their parents age and pass on. Ever present too, and just as big an obstacle, is the belief that citing "community" cliches will actually help those who are most in need of help.

I have visited Centracare years ago with the father of a adult autistic son who resided there at the time. He told me of seeing his son dressed in a hospital "johnny shirt" in a room with a cement room and a liquid substance on the floor. I did not know whether to believe him or not until we arrived and again found him in the same room in the same condition. At least one autistic youth and one adult have been sent to a facility in Maine at considerable financial expense and considerable emotional stress for families living on the other side of an international border. I have had parents email me to tell me of their young adult autistic children hitting their head and having to wear self protective head gear at home while parents struggled to provide care. I was told of an autistic adult living on a general hospital ward for a time in Saint John. I am aware, as are we all, of the autistic youth who lived for a time on the grounds of the Miramichi youth correctional facility before being sent to the a Spurwink facility in Maine.

In early intervention and in school services both Liberal and Conservative governments have been of some assistance, have helped to provide needed, evidence based services to some extent. I ask that the same spirit be applied to developing a modern, decent residential and treatment facility for severely challenged autistic adults in New Brunswick. Nothing has been done for years. We have failed New Brunswick's severely challenged autistic adults. Community rhetoric has not helped. Autistic adults need a place to live. My son will need a place to live with access to professional autism care and autism trained staff, a place with educational and recreational dimensions to provide a decent life for him and others like him.

Please advise whether your government is considering helping autistic adults and is working on a modern, reality based model. If that is not in the works, please say so straight up.


Harold L Doherty,
Conor's Dad

1. A Place for Conor What resources are available when you’re growing up with autism?
2. Autism services needed for N.B. adults
3. N.B. can be a leader in autism services
4. Autistic boy kept in New Brunswick jail, Toronto Star, October 19, 2005


Cameron said...

Bravo Harold. Keep pounding away at them. I totally support your efforts. Community inclusion is great but if our systems are not followed through from toddlers to adults. We are in trouble. More attention is needed from the responsible departments. Perhaps in this newer world of transparency. The ones resting on their laurels in positions of power will now think twice before ascending there with no intention of taking active roles in their jobs. I know that if I'm not productive and self starting at my lowly position, I hear about it. Maybe we'll someday get there in all professions. Wow what a world that would be eh? Thanks again Howard. Never quit. Cam.

L.P. said...

Discouraging to think of how our politicians and those in power have got their priorities so wrong.
Until it affects them personally I do not think they are capable of relating.
Harold I admire your ability to write express yourself and reach out with your message to try to get help for the autistic and their families.

cabinfever07 said...

I totally agree with you Harold. When I was minister of FCS we had to use facilities in the State of Main at an annual cost of $300,000 per person. I had planned on pursuing the initiative you speak of using the State of Maine model...this would keep the autistic person closer to home in familiar surroundings, it would create employment so that the $600,000 now spent in Maine could be used to pay for these services at home. As you know, my efforts were derailed and I had to resign as minister. These financial facts I speak of need to be brought to the attention of the present government...perhaps they will see the light.
Keep up the fight and I personally wish you the very best of luck.
Tony Huntjens