Autism, Consultations and Conor Make for a Busy Weekend

This was a busy weekend for me. I participated in the Consultation on a Centre of Excellence for Children and Youth with Complex Needs Friday afternoon and evening and Saturday.  It was a privilege to be able to participate as a parent autism advocate. The consultation was organized by Bernard Richard, the Ombudsman/Child and Youth Advocate and an individual held in high regard by most people in New Brunswick. His stature is such that the recommendations of Mr Richard and his co-chair Shirley Smallwood a mother of child with autism and a long time advocate on autism and other issues together with the fact that  this process was  specifically requested by several Deputy Ministers means that the recommendations are likely to result in concrete  action being taken. 

I did not agree with everything said at the consultations but the process was good and there was a vigorous "discussion"of ideas and issues. Not surprisingly, my friends from New Brunswick's powerful community living organization did not agree with my perspective but the exchanges were both candid and courteous.  The co-chairs' advisory counsel comprised of  Dr. Simon Davidson, a child, adolescent and family psychiatrist at the Children's Hospital of Eastern Ontario (CHEO), Dr. Jacques Richard a psychology professor  and director of clinical training at the  Université de Moncton's and Dr. Tara Kennedy  a developmental pediatrician and clinical leader of pediatric autism rehabilitation services at the Stan Cassidy Centre for Rehabilitation in Fredericton gave excellent, well received,  presentations. 

One serious disappointment from my perspective was Mr. Richard's categorical statement, consistent with the community living corporation's influence in this and all other government processes involving special needs children and adults, that he would not be recommending any institutional placements or care.  As the father of a severely autistic son with intellectual disability I do not WANT my son to live in an institution at any time but I also know first hand the REALITY that there is currently NO ALTERNATIVE available in New Brunswick in terms of care for those most severely challenged by their disabilities. 

 

The feel good philosophy and buzz words of the quasi-governmental community living  corporation has worked wonders for those with less complex needs but has done little  to help the most severely challenged. I have been  to the psychiatric care facilities in Campbellton (where I received a full tour from the fine, caring and overworked professionals who operate the Restigouche hospital) and Centracare in Saint John, Although I do not want my son to end up living in these places I know that the group homes, and the so called "community",  do not take care of the most severely challenged. 

The proof of what I say is obvious. The proof is the residents living in the psychiatric facilities in NB and those who have been exported to Maine and other provinces for many years. The proof is the challenged youth who have been sent to a youth correctional facility in Miramichi because the "community" has failed them.  I will have other comments on the consultation process later, both positive and negative, but this obvious hijacking of the complex needs process by the community living corporation and its  feel good philosophy is most disturbing.  The consultations on youth with complex needs is in serious danger of failing to address the needs of those with the most complex and persistent challenges. The consultations are important and I am thankful to Mr. Richard for letting me participate even though I am an open and frequent critic of the failed community living philosophy in NB and even though I do not expect to have my concerns addressed.  It is better to have tried and failed than not to have tried at all.  

It  did take a day and a half of my time and it was important but I was away from family.  I made up for the missed time with Conor today.  Conor showed Dad  his new haircut from Saturday morning (thank you Angie at Clipper Blade in the York Plaza in Nashwaaksis).  We went for a nice walk along the St. John River and took a trip to the movies to see "Megamind".   As I have commented  before Conor hadn't been to a movie theatre in several years prior to this spring because of his inability to handle the stimulation and excitement. This spring though he made huge breakthroughs  going to the theatre (several times) to see Shrek, Tory Story 3, Despicable Me and now Megamind. His ability to handle the noise and visual stimulation of the theatre was outstanding again today.  His progress provided me with some optimism ... much more than I received at the consultations which appear to be destined to conclude with  buzz words and feel good cliches about community, hand wringing  and rhetoric over "institutions" ... but no alternative and no solutions for those most desperately in need of care and treatment ... life long care and treatment.