Monday, March 12, 2007

New Brunswick's Autism Progress

When my son Conor was diagnosed with an autism spectrum disorder (Initially PDD-NOS, subsequently changed to Autism Disorder) nine years ago our home province of New Brunswick had virtually no autism specific services. Much has changed since then - for the better. And much more desperately needs to be done.

Eight years ago an interdepartmental committee comprised of representatives of the Departments of Education, Family Services and Health and various community "stakeholders" examined the services available and, after approximately 18 months issued a report in late 2001 (the IDC Report) which confirmed what we already knew - there were very few autism specific services available in New Brunswick. There was no government funding for preschool autism treatments, there were no autism trained teachers, or teachers aides, working in New Brunswick schools, the place everyone in the mainstream classroom philosophy which has dominated NB schools did not provide for the accommodation of autistic students in a continuum of learning environments, there were few living accommodations suitable for autistic youths and adults and there were no treatment facilities offering autism specific in residence treatment. Then almost one full year after the release of the IDC report, and its timid recommendations for evidence based autism specific services, the lead minister on the "autism file", Health Minister Elvy Robichaud admitted to a New Brunswick reporter that he had not yet read the IDC Autism Report, that he had "too much on his plate" and would get to the report later. Many parents of autistic children in New Brunswick were disgusted and galvanized into action. Our trust in the good will of government leaders was shattered and things would never be the same again.

Protests were held at the New Brunswick legislature and government buildings housing the offices of civil servants in the Departments of Education, Family Services and Health. Letter writing campaigns, radio and television interviews and public announcements were made and meetings resulted with cabinet ministers and senior civil servants. On April 1, 2003 Health Minister Robichaud announced that $2.1 Million dollars would be made available for a variety of autism related projects, a modest start but a start nonetheless. Then more procrastination and delay as the government took many more months before announcing that funding for evidence based interventions for autistic children aged 2-5 would be provided to a maximum of approximately $17,000,00 per year. After a long period of many months during which funds, treatments, development time and hope were spent in the absence of any system of accreditation and accountability an agency system was established to ensure reliability and accountability in provision of autism interventions.Training of Autism Support Workers and Clinical Supervisors was provided through the UNB-CEL Autism Intervention Training Program, both developments spurred on by parental agitation and advocacy.

The school system remained resistant to calls for change. The Autism Society New Brunswick enjoyed a nominal place at the table for such events as the Department of Education's Anglophone side Dialogue on Education Committee. ASNB input though carried substantially little weight with the Department's bureaucracy. But parents kept agitating and lobbying and some Teachers' Aides and Resource Teachers working with autistic students have begun to receive autism specific training at the UNB-CEL AIT program and the current government has committed to training 400 more over the next four years.

The Mackay Report on inclusion in New Brunswick schools was largely a disappointment in its discussion and recommendations for autism. Its discussion of autism itself was minimal and shallow. Mr. MacKay's recommendations for training required timelines of 3-5 years before autism specific training would even begin for teachers aides and resource teachers. The process leading up to Mr. MacKay's report though did give the Autism Society an opportunity to speak directly to other stakeholders and parents and to engage department and school district officials in frank, if sometimes unwanted, discussion about the place of autistic students in New Brunswick schools. The philosophy of mainstream classroom inclusion for all had already been losing ground in face of the reality that some autistic children learned better and were not as likely to be overwhelmed in a quieter location outside the mainstream classroom. Social activity and interaction can be scheduled when appropriate to the autistic students capabilities and needs. But the MacKay review process allowed the ASNB to voice its concerns for evidence based child centered education directly to top school, district and department officials. It now appears likely that the Mackay timelines will not be adopted by the Department. The action to improve the educational opportunities for autistic school children is taking place now, not 3-5 years down the road as Wayne MacKay had recommended.

One of the bright lights on the autism scene in New Brunswick dimmed when it was announced that the Stan Cassidy Rehab centre would discontinue its pediatric tertiary care services for autistic children in New Brunswick. The Stan Cassidy had done outstanding work for autistic children with complex issues. The impending loss of its services would have been a devastating loss. Fortunately, the decision was reversed with ASNB and parents playing a substantial role in that decision and with the efforts of people such as Dr. Ron Harris and Dr. Rob Leckey at the Centre, Ken Ross the Assistant Deputy Minister for Mental Health services, and then Health Minister Brad Green. A new pediatric tertiary care team for autism services is now being assembled at the Stan Cassidy's new location on the grounds adjacent to the Chalmers Hospital in Fredericton.

The progress in pre-school intervention and education of autistic school children is not perfect but it is light years ahead of where we started as parent advocates 8 years ago. Now though a huge challenge remains, a black hole which absorbs the lives of autistic youths and adults in New Brunswick. Like many mental health disorders there is little available in the way of decent residential care and treatment for autistic youths and adults. There are group homes in various locations in New Brunswick but the staff, by and large, has no autism specific training. These youths and adults enjoy very little in the way of a quality of life. They are in essence being kept in custody for safety reasons but receive little of the life experiences that most of us take for granted. Frustrations and confrontation with poorly trained staff result in autistic youths ending up in court on assault charges. Treatment facilities dedicated to autism do not exist in New Brunswick and there are very few professionals who are capable of providing the treatment needed by autistic youths and adults .

The abysmal state of youth and adult residential care and treatment in New Brunswick is a disgrace, a black mark against our province in its treatment of autistic persons. There has been much progress in preschool and school services for New Brunswick autistic persons. The battle to help our autistic youths and adults receive decent residential care and treatment must begin and it must begin now.

2 comments:

Charles LeBlanc said...

Yes, Elvy Robichaud was very ignorant at times.....

Good piece....emotional but good.....

Anonymous said...

Wow...when you wrote it all down no wonder we are all tired. But not ot the point of giving up. Oh no....there is still work to do. Onward to the adult portfolio.