Parent Advocacy, Autism Services and the Lack of Decent Adult Autism Care in New Brunswick

In Canada October is our official Autism Awareness month.  

That is not as widely known as it might be for a number of reasons including the fact that we live next door to the large, influential United States where April is the official Autism Awareness month. A second reason is that we do not have a meaningful National Autism Strategy.  Here in Canada our federal government has taken a small and narrow approach to autism.  Our federal government plays no meaningful role in providing autism services across Canada and in fact plays no meaningful role in providing reliable evidence based information about autism.  For that reliable autism information parents and autism advocates have had to look to the United States for guidance. It is quite understandable in those circumstances if Canadians assume that April is also autism awareness month here in Canada. In some provinces though, particularly British Columbia and New Brunswick strong parent advocacy did lead to creation of evidence based autism services being available. 

Here in New Brunswick we live in one of Canada's smaller, less affluent provinces.  Nonetheless we were, for a while at least, a Canadian leader in provision of evidence based early autism intervention, thanks to strong parent advocacy and sound guidance about evidence based autism interventions from UNB Professor Emeritus (Psychology) and clinical psychologist Dr. Paul McDonnell. With the information base to which Paul McDonnell directed us, parents were able through determination and strong advocacy, to prompt our governments, both Conservative and Liberal,  to provide evidence based early intervention services, in both English and French at a level that was recognized by the Association for Science in Autism Treatment:

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment"

The most advocacy focused organisation in New Brunswick was group, of which I was a founding member, called FACE ... Family Autism Center for Education. Despite the reference to Education in the title FACE was primarily an advocacy organization that. because of its advocacy focus, did not enjoy official charitable status. We met in my law office board room on King Street in Fredericton and we lobbied persistently online, through the "regular, mainstream" media such as CBC, Rogers Television, The Daily Gleaner and the Telegraph Journal.  Eventually we were able to convince more reluctant members of the provincial Autism Society to join our advocacy efforts and we returned to the Autism Society New Brunswick. Together parents stood in front of the Legislature and other provincial government buildings holding signs and making our voices heard.  

Ultimately we received conscientious, serious responses from high political leadership in the Conservative Bernard Lord government and subsequently in the Liberal Shawn Graham government. With responsive leadership from our provincial cabinets we were able, for a considerable period of time, to leap frog over the more bureaucratically inclined senior civil servants who wanted to go slow who lacked the understanding of the need for urgency in helping our autistic children. 

As noted by ASAT's David Celiberti we were able to establish a strong early intervention autism service base here in New Brunswick.  We were also successful in having our governments begin providing strong autism training to Teachers' Aides and Resource Teachers to assist autistic children in our schools.  That fight was somewhat more difficult.  "Educators" did not really see it as the place of parents to play a significant role in determining what services are available in NB schools.  Again, we appealed to our political leadership and with solid information from local experts like Paul McDonnell and US sources like ASAT,  the Office of the US Surgeon General and state autism reports from Maine, New York and California we were successful. We also used the tools at our disposal including appeals under our provincial Education Act and Human Rights Act to help our autistic children receive autism trained aides in our schools.

Strong parent advocates in British Columbia played a significant role in providing tools for New Brunswick parents to use in exerting political pressure here. The Hewko BC Supreme Court decision and the Auton BC Supreme Court  and Auton BC Appeal Court  decisions (until the latter was reversed by the Supreme Court of Canada) provided valuable tools to assist us in our advocacy here in NB.  Ontario parents fighting for autism education services in the Deskin-Wynberg litigation were also of great assistance to our efforts here in NB. 

New Brunswick parent advocacy was very successful in establishing the early intervention and school autism services here in NB.  We intentionally started out by focusing on early intervention services and then moved on to the school years.  Unfortunately the success we enjoyed in advocating for our children in early intervention and school services has not been repeated in the adult years. We are as we have been for many, many years largely bereft of any meaningful adult autism care residential care and treatment services.  Our more severely impaired autistic adults will, if they are lucky, live in group homes staffed by people with no autism specific training and little if any professional oversight. Those, like my son, who are severely autistic AND developmentally challenged will probably have to live in hospital facilities, again, if they are lucky.  New Brunswick has for many years ignored these serious needs of autistic adults although there are some signs of an awakening in the form of a pilot project involving the training of one service providers at one group home. 

We also have to continue the battle to make our civil servant decision makers understand that some people with autism have other challenges which present themselves which can provide very serious risks to the safety of autistic adults. Many with autism and intellectual disability also suffer from seizures, some of which are life threatening.  Some on the autism spectrum, including some with higher functioning levels also suffer from serious challenges like depression, challenges which may be made very difficult to address because of their autism disorders. 

In Autism Awareness Month in Canada we still lack a meaningful National Autism Strategy.  Here in New Brunswick our successes at early intervention are still recognized as in they were by ASAT in 2010 and by a mother who recently returned to NB from Ontario to open a Bistro in her hometown of Woodstock and because New Brunswick offered better autism services for her autistic son than those that were available in Ontario:

"Opening a restaurant, however, was not the motivation to bring McQuade back to Carleton County. She has a four-year-old son with autism, and she says the treatment in New Brunswick is more accessible and better than what was available to her in Ontario."

A new bistro in the square, Telegraph Journal, September 5, 2013

Many New Brunswick parents whose children are currently receiving early autism intervention services or school autism services may be unaware that it was parent advocacy that led to the creation of these services.  We have to be vigilant to maintain and expand these services at the early and school years. And we absolutely have to work to bring to the attention of government the need for a full range of autism residential care services and for the end of policies of excluding adults with Aspergers/autism from other mental health services.

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10 Years of the Long, Long Fight for A REAL Canadian National Autism Strategy

Picture from Torontoist, May 10, 2008


Stefan Marinoiu, father of a severely autistic son, set out on foot from Toronto to Ottawa 
 in mid Canadian winter  and later went on a hunger strike to bring attention  to the 
challenges faced by autistic Canadians and the need for a National Autism Strategy

Autism Speaks Canada is holding a National Autism Strategy meeting in Banff Alberta next week and was kind enough to invite me as a participant and to subsidize my travel and accommodations. Some autism advocates I have talked with, people who have been actively involved in their provinces advocating for autism services and advocating for a REAL National Autism Strategy for many years are skeptical about the meeting.  Autism Speaks Canada has been soliciting funds for autism in Canada but to what end? What have they accomplished and what do they intend to do with the monies received, monies which could be directed toward provision of services for autistic persons. These are important questions and deserve answers. I would also point out that autism services in Canada have been obtained by parents fighting provincially not by national autism organizations.  I look forward to the meeting and the discussion though and will approach it  with an open mind and hopeful that the real needs and priorities fought for by autism advocates in Canada for a decade will be addressed in the meeting.

These priorities include:

1) National medicare coverage for ABA and any other intervention which meets the evidence based standard of  effectiveness as an autism intervention.

Federal funding to assist all provinces in  meeting the needs of autistic Canadian across their lifespans must also include:

2) National discussions of methods for educating students with autism in the way the individual learns best in the learning environment in which they learn best. Dumping all autistic children in the mainstream classroom regardless of their individual challenges, refusing to provide autism trained assistants to those who need assistance, does not work and can cause harm. Schools across Canada should learn best methods for teaching autistic children and avoid ideology, rhetoric, buzz words and cliches. Autism trained teachers and teacher/education aides are required for many autistic students and the federal government can provide a national forum for ensuring this happens and financial assistance where necessary.

3) (a) Work force hiring and training for those autistic adults who are capable. 

3)(b) Adult autism residential care and treatment for the most severely autistic.

Any efforts toward a national autism strategy have to address these priorities and do so in a way that actually helps people with autism across the life span from early intervention to education to adult workplace and residential care issues.  If a national autism strategy does not speak to these priorities and commit to real action to address them  it is not a real national autism strategy and should not be presented to the public as such. 

The Fight for a National Autism Strategy, a REAL National Autism Strategy, has been going on for many years in Canada.  Here in New Brunswick the struggle for a real national autism strategy has lasted a decade. It  began before Autism Speaks was formed in the United States and was waged without any real assistance from the Autism Society Canada. The fight for a real national autism strategy was fought by activists in British Columbia like the families involved in the Auton litigation and FEAT-BC, it was fought on the Hill in Ottawa by a courageous Andrew Kavchak. It has been fought by Stefan Marinoiu with his winter trek and hunger strike. 

Here in New Brunswick the fight for a National Autism Strategy  was fought initially by an organization called FACE of which I was a founding officer. It was publicly acknowledged, after a couple of years of effort by FACE representatives, by Fredericton MP Andy Scott in a high profile October 2003 event celebrating Andy's 10 years as an MP and featuring as a guest speaker former NB Premier Frank McKenna. Do the math. Here in New Brunswick the fight for a National Autism Strategy has been carried on for a decade, since 2001:

Tali Folkins article in the NB Telegraph-Journal, October 20, 2003:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Andy Scott, with other MP's, was ultimately successful in getting a National Autism Strategy motion passed in the House of Commons. That effort was important in obtaining recognition of the need for a national autism strategy but it did not provide what parents of autistic children were fighting for from BC to Nova Scotia: a federal commitment to provide Medicare funding for ABA which to date remains the only evidence based effective intervention for autism.

The federal government has done nothing, absolutely nothing, to address the real needs of autistic children, school kids with autism or adults with autism needing assistance in the workplace or needing residential care. The federal government has done nothing to help those adults with severe autism who need 24/7 residential care and treatment. The federal government has stayed outside the battle content to hide behind constitutional jurisdiction line while ignoring the challenges faced by autistic Canadians and their families.

Canada has been living through an autism crisis. Progress has been made. More in some provinces than in others. Much more remains to be done. To date such progress as has occurred has taken place because of activists in each province pushing provincial governments. Meanwhile the federal government has effectively disowned autistic Canadians refusing to recognize with real actions the need for a comprehensive national autism strategy.

A real national autism strategy is not accomplished by establishing a new autism bureaucracy in the federal civil service. A real national autism strategy should not focus on a Canadian specific surveillance study of autism rates as its number one priority or even establishing another academic chair at a University in Ontario. A real national autism strategy should focus on the real needs of autistic Canadians and real action to address them NOW not in another 10 years.

Those real needs and real priorities have been articulated for a decade. If a national autism strategy is going to help autistic Canadians with the real challenges of their autism spectrum disorders real action has to be taken and it has to be taken now.

Pondering the problems faced by autistic children and adults for another decade will not help autistic Canadians living today.

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