Friday, May 01, 2009

A New Brunswick Autism Dad's Open Letter to Dr. Susan Bryson re Nova Scotia's Immoral Autism Lottery

May 1, 2009

Dr. Susan Bryson, PhD
Joan and Jack Craig Chair in Autism Research
Pediatrics, Dalhousie University

Dear Dr. Bryson

I am writing you this open letter (also posted on my blog site Facing Autism in New Brunswick) to express my concerns about Nova Scotia's lottery system of autism service delivery a system which, in my respectful opinion, is immoral. I do not believe that something of such importance to the life and well being of a child with a serious neurological disorder should depend upon a system of chance. I do not believe that such a system can be rationalized in a country like Canada which recognizes the desirability of a universal, publicly funded approach to health care. I do not believe that Nova Scotia's lottery system of provision of autism service delivery is consistent with principles expounded in several versions of the United Nations Declaration of the Rights of the Child.

As a lawyer I am also doubtful that the lottery system would survive a challenge under the Charter, notwithstanding the Auton decision, given that, unlike in Auton, the Nova Scotia government has agreed to provide some autistic children with autism specific ABA services and given the further empirical and professional support for ABA since the Auton decision, including the 2007 review by the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders. I ask that you, with your internationally recognized autism expertise and your acceptance by government authorities in Canada, including provincial governments and the federal CIHR, speak out publicly against the lottery system of autism service delivery in Nova Scotia.

As you are undoubtedly aware, those Nova Scotian families whose autistic children lose out on the Nova Scotia Autism Lottery, and who have the means to do so, leave Nova Scotia in search of services elsewhere. In one well known instance, a husband and wife in that situation, both medical professionals, left Nova Scotia for Manitoba for the autism services available at the St. Amant facility in Manitoba. For famiiles of lesser means whose autistic children do not win the autism lottery .. well .. with your background and expertise you know what awaits them.

I am the father of a 13 year old boy diagnosed with Autistic Disorder and assessed with profound developmental delays and I have been a parent autism advocate here in New Brunswick since my son's initial diagnosis at age 2, a relatively early age of diagnosis 11 years ago. I also have very strong family ties in Nova Scotia where I was born and where my parents and siblings, cousins, nephews and nieces live, including an autistic child in my extended family. I also have friends in Nova Scotia's autism community including Jim Young of FEAT NS who has been a relentless and outstanding advocate for autistic children and adults in Nova Scotia. I am concerned for autistic children and their families who must be subjected to the Nova Scotia autism lottery.

I am also deeply concerned for a more immediate reason. I am concerned that the Nova Scotia lottery model which, on its face, reflects greater concerns for budgetary considerations than for the best interests of autistic children, might influence developments elsewhere in the Maritimes and particularly here in New Brunswick. As an autism advocate here in New Brunswick I can say from personal experience that our autism advocacy community had to overcome many obstacles to develop an autism service delivery model at both the pre-school and school levels that is as good as any that I am aware of in Canada or the United States. And it took time to develop the model we now enjoy.

In 2001, after an Interdepartmental Committee Review (Education, Health, Family Services), the New Brunswick government committed to the principle of provision of evidence based autism interventions. Most autism services are now provided by Autism Support Workers, Clinical Supervisors, Teacher Assistants and Resource Teachers trained at the University of New Brunswick College of Extended Learning.

The UNB-CEL AIT program has been subjected to external review by Dr. Eric Larsson who has commented about the program as follows:

"The current AITP is a remarkable and thorough program that has been developed to an exceptional level of quality in the context of limited resources. The province-wide model is one that many other provinces should adopt, as it carries with it many cost-effective features. The curriculum content requires little modification".

In addition to Dr. Larsson's external review the New Brunswick autism service delivery model has been the subject of presentations by key local professional and administrative personnel at national and international conferences. Dr. Paul McDonnell a clinical psychologist and Professor of Psychology (Emeritus) from UNB has been instrumental in educating New Brunswick parents and in providing clinical autism services to autistic children. He made a presentation on the New Brunswick Autism Service delivery model at the ABA International Symposium, Chicago, May 123-28, 2008. Anne Higgins, Director Professional Development Division, College of Extended Learning, University of New Brunswick, made a presentation on the NB model at the CAUCE (Canadian Association for University Continuing Education) Conference 2008 at the University of Western Ontario.

The pre-school autism interventions are provided by the Autism Support Workers and Clinical Supervisors at several agencies situated around the province. AITP trained Teacher Assistants provide daily intervention and educational assistance to autistic children in neighborhood schools across New Brunswick. The system is not perfect. More work needs to be done but I can tell you as an autism advocate with ties across Canada that some people have actually moved to, or are considering moving to, New Brunswick to seek autism services not available in their home province, including some from Nova Scotia. I have visited Ontario as part of a national autism advocacy campaign last year and I am well aware through the personal friendships that I have developed there, and through my blogging activities and contacts, that Ontario despite its relatively greater wealth, is not even close to New Brunswick in provision of pre-school or school autism services.

In addition to a serious effort by the current government of Premier Shawn Graham and Education Minister Kelly Lamrock to provide autism training to Teacher Assistants and Resource Teachers our schools have also begun to accommodate ABA based education for autistic children in our schools in a variety of settings. Some autistic children, for whom that environment is suitable, are educated for the most part in the mainstream classroom. Others, including my son Conor who is severely autistic, are educated in a small separate room, at our request, where he is not overstimulated and overwhelmed by the mainstream classroom environment. Conor visits common areas of the school for specific periods for limited periods of time with a TA who is UNB-CEL trained and who pays close attention to my son's reaction to his environment and ability to function in different locations. In terms of peer acceptance I can say through personal observation taking him to and from school that that my son has been very well received by other children in the grade school and middle school he has attended in our neighborhood even though his time with them is for brief periods during class time or in common areas of the school.

Apart from these regular pre-school and school services New Brunswick also has an autism specific pediatric tertiary care team at the Stan Cassidy Centre for Rehabilitation in Fredericton. At one time the autism team at the Stan Cassidy was scheduled for closure .... because the overwhelming demand for its services was perceived as a threat to the continued viability of the Stan Cassidy's overall operation. Community and government response to that initial closure decision was such that the decision was reversed. The autism component of the Stan Cassidy team has been rebuilt and now includes a next generation of professional leadership including Dr. Tara Kennedy who has quickly become immersed in, and a very important part of, New Brunswick's autism service delivery model.

These autism services in New Brunswick have been largely built since 2003-2004 while next door Nova Scotia, starting from a similar vantage point, today offers a lottery system of early intervention with little in the way of systemic provision of autism services in schools across Nova Scotia. Here in New Brunswick we had a determined parental autism advocacy community driving much of what has been accomplished. We also had responsive government and political leadership.

Vitally important to what has been achieved though has been the direct and sustained involvement of New Brunswick's academic and professional autism community in helping parent advocates understand what is required, from an evidence based perspective, to help our autistic children. The same people have been engaged in helping government work through and understand the importance of evidence based approaches to autism service delivery. The public involvement of our academics and professionals has been key to what has been achieved in New Brunswick.

I ask you to speak out publicly against the immoral autism lottery system in Nova Scotia. Your expertise, and government trust in you, would surely mean that your views would be given considerable weight by public decision makers. Nova Scotia's autistic children would surely benefit from your public advocacy.

You could consider recommending to the Nova Scotia government that it replace its immoral autism lottery with the more just, equitable, evidence based and province wide model developed here in New Brunswick and recommended by Dr. Eric Larsson.


Harold L Doherty
Fredericton New Brunswick

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Claire said...

You are an articulate, credible and courageous advocate. Canada's autistic children and their parents are lucky to have you.

Unknown said...

Thank you for your kind words Claire.


Anonymous said...

What a great letter. I hope Dr. Bryson will respond.
As I read it the memories came back and it is hard to believe what we as a collective group done. You provided a great amount of leadership, and continue to do so. Also bringing out the best in us and our skills.

Ohhh the skills I have learned...LOL.

I am always ready to 'dust myself off and go at it again if need be"

Enjoy the day.


farmwifetwo said...

School's not too bad - could and has been much worse for us over the years so I'm being careful trying not to jinx it :).

With PPM 140 you can tweak things the way you want it more/less ABA. You will not get intensive therapy, and I don't recommend PDD classrooms - behavioural horror stories. But the IEP's are much better written and worked on than they were when we started.

What ticks me off is that OT is "FINE MOTOR ONLY". WT??? Oh, mine does sensory, but they won't come unless there's FINE MOTOR ONLY reason's to show up. I gave a wonderful BS response when I got her back in for my eldest last year b/c truly he didn't qualify. But she's there, she's staying and sensory has been dealt with. And the little one too... but being severe, more is done.

OT is paid via OHIP, through CCAC (community care access corporation)

Next is SLP (Ed Act Pd). As long as it's DICTION ONLY, you can get CCAC (pd via OHIP) to do it - big run around but possible - so you don't have to wait the 6 to 8 weeks at the beginning and end of the year while the JK's and SK's are tested. BUT, according to PPM 81 Children with Autism must have SCHOOL BOARD services only b/c they require LANGUAGE services... WT?????

I'm just happy the last "speech teacher" (not an SLP) in the school board, that we had last year (horrible) has since retired. But I'm still doing speech alone at home since eldest only gets consult and little boy only gets 30min every 2 weeks. Luckily she sent a program home for us to do.

Hopefully, you'll get a response to your letter. I'm expecting what I sent to the Fed's (all 4 parties) to be filed under G for garbage but.... I feel better, I've had my say, and that's what matters most.


maiahs_momma said...

Thank you for sending that letter to them at the IWK! What kind of response did you get??
I started a facebook page called "Choice words" with a good friend of mine Laura Campbell. We are trying to get better support services for all children in Nova Scotia with Special Needs/children with Learning disabilities in all schools. Thought you might want to join our little group...


Unknown said...

Hi maiah's momma

I never received a reply at all. I guess Dr. Bryson does not communicate with the lowly unwashed.

Along with other parents I have been active here in NB for over a decade in advocating for autism services. We are not perfect but I could not move to Nova Scotia with my autistic son, even though I am originally from there (born in Waterville Kins Co) and my parents brother and sisters, aunts, uncles and cousins all live there.

I don't know how an autism health care professional can not speak out agains the immoral lottery system in NS.