Long Term Autism Care in New Brunswick: An Open Letter to the Complex Needs Co-Chairs

December 2 2010

Co-Chairs Bernard Richard and Shirley Smallwood 

Consultation Process for Centre of Excellence for Children

and Youth with Complex Needs

Dear Mr. Richard and Ms Smallwood

I am writing you this open letter to address what I believe is  a fundamental flaw in the well intentioned complex needs consultation process that you co-chair. I do so even despite the respect I have for both of you.  The flaw consists of ruling out, as you did in your opening remarks at the Fredericton Inn, any "institutional" recommendations.  The flaw consists in taking a buzz word approach to addressing the real life challenges presented by children and youth with  with complex needs. This approach   implicitly praises solutions which mention "community" and  mocks realistic needs based discussion of a centre as old fashioned "bricks and mortar" thinking.  The flaw consists of believing, contrary to the evidence, that all children and youth with complex needs will ultimately recover well enough to live in an undefined "community" setting.  

This unrealistic "community" philosophy has dominated thinking in New Brunswick for decades and is in fact responsible for  forcing youths and adults with autism disorders and other challenges into psychiatric care  hospitals after the inadequate group homes either can not or will not take them.  Any discussion of developing realistic, long term care needs of severely challenged youth and adults with autism has met with dismissive rhetoric  as took place at the Fredericton Inn and subsequently at the Connecting the Dots pep rally at McLaggan Hall.  Over several years of autism advocacy I have encountered the rhetoric of the inclusion philosophy adherents and have seen it prevent candid discussion of serious issues. I heard that same rhetoric from you at the Fredericton Inn Mr. Richard when you declared that you would not make "institutional"  recommendations.  I heard it again during the Fredericton Inn consultations when the discussion table to which I had been assigned was joined by NBACL President Clarence Box who sat down and immediately declared that we had to get away from  "bricks and mortar" concepts. I heard the rhetoric again  at the Connecting the Dots Pep Rally at McLaggan Hall at UNB when you too spoke of moving past "bricks and mortar" thinking.  Such rhetoric is dismissive and harmful to the interests of those who, ultimately, need bricks and mortar facilities in which to live decently and securely  and receive the expert care they need.

With great respect I have no illusions about the complex needs consultation process. Your recommendations are unlikely to  address the long term needs  of persons like my son now 14 who is severely autistic with profound developmental delays.  Your recommendations are unlikely to address the needs of the autistic individual who has been living in Spurwink for several years. Your recommendations are unlikely to  address the needs of youth  and adults with autism disorders who have resided in hospital wards, hotels and even at the Miramichi youth correctional centre.   

I offer this correspondence with  my family and other families like the Michaud  family featured recently on  CBC  in mind.   The Michaud's, who I have met,  are loving and caring parents who have faced a challenging situation in raising and caring for their son with many severe challenges including Asperger's and violent behaviour as was described in the feature.  The Michaud family courageously appeared on CBC television and asked for long term care facilities to help their son and others facing similar challenges.  They spoke honestly about the violence they and their children have lived with in their home. 

The system in place in New Brunswick, a system dominated by community inclusion philosophy,  has not provided real life, evidence based solutions to help the Michaud family and other families facing severe challenges in raising autistic children, and other children with complex needs,  as they enter adolescence and adulthood.   The flaw in your thinking is that you fail to recognize that it is the community inclusion philosophy and its powerful advocates, including Order of Canada recipient, former New Brunswick Human Rights Commission Chair,  and now Premier David Alward's transition team advisor Gordon Porter,  which have prevented development in New Brunswick of modern, community based long term care solutions for youth and adults with autism disorders and other complex needs. With great respect you appear to be poised to recommend curing problems by recommending more of the same philosophy that has done so much to create those problems.

If you look at the CBC web site you will find an article featuring  Dr. Paul McDonnell which praised New Brunswick's early intervention and school based autism programs but also spoke to the need for an autism centre of excellence one which would  include the ability to provide long term care for those autistic persons who will not be able to live in community based facilities.  I believe Ms Smallwood is well aware of the leading role played by Dr. McDonnell, a clinical psychologist and retired psychology professor,  in building New Brunswick's preschool and school based autism service delivery model that has received recognition and praise from such experts as Eric Larsson of the Lovaas Institute and David Celiberti of the Association for Science in Autism Treatment.  Dr. McDonnell stated:

"What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.

Our greatest need at present is to develop services for adolescents and adults.

What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists.

Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities."

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.

That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.

Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.

The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff.

According to the most recent CDC estimates 1 in 110 persons have an autism disorder diagnosis.  The recommendations of Dr. McDonnell, a New Brunswick autism expert knowledgeable about autism realities in New Brunswick,  should be part of any recommendations for youth with complex needs that involve autism disorders.  If you are not going to address these serious challenges in a meaningful way, as Dr. McDonnell has done,  I would regretfully submit that  you will be doing  a serious disservice to many youth and adults with autism disorders ...  people that I do believe you want to help.

Respectfully,

Harold L Doherty

cc. Facing Autism in New Brunswick

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Autism Education: New Brunswick Educators Plan to Abandon Quality Autism Training for Aides Working with Autistic Students

I have written often, and with great pride, about New Brunswick's Autism Service Delivery model for autistic students and pre-schoolers. NB's ASD model has been presented at a national and international conference. It has been subjected to external review by international autism expert Dr. Eric Larsson of the Lovaas Institute who stated:

"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".

You would think that such success would be embraced by civil servants with portfolio responsibility for autistic students but sadly the opposite is true. At the school level the training of teacher assistants and resource teachers working with autistic children at UNB-CEL Autism Intervention Training has met with fierce resistance from the minute that the careerists in the Department of Education learned that the program was being implemented pursuant to discussions between the Autism Society of New Brunswick and the current government of the province.

Premier Shawn Graham and Education Minister Kelly Lamrock committed to funding training for 100 TA's and resource teachers a year for four years at the UNB-CEL AIT program. That commitment was resisted initially be "educators" who prepared 7 alternative proposal outlines with no meat to them in order to stall implementation of the UNB training commitment. When an alternative "plan" was fleshed out it included in house training which carried no assurances of quality or integrity. There were to be no entrance requirements. The course could be completed at the candidates leisure with no time line for completion and no graduation or exam requirements. The plan would be directed by a soon to be retiring Director of Student Services who was one of the most determined opponents of the UNB-CEL training commitment. Presumably he would have received a salary to administer the program in addition to his retirement pension.

As an indication of the ferocity of resistance to the UNB proposal the alternative plan was presented to ASNB at a meeting at which the Department indicated I could not attend or the meeting would not take place. A frivolous conflict of interest allegation was made against me on the grounds that I had a complaint against the Department relating to autism services before the NB Human Rights Commission. In that complaint I was not acting as a lawyer. I brought the complaint on behalf of my autistic son .... as his father. Rather than disrupt the meeting though I agreed not to attend and ASNB simply discussed the proposals afterward with everyone including me.

At a subsequent meeting of the Dialogue on Education Committee the agenda for the day made no mention of an autism training program to be discussed. I attended on behalf of the ASNB on short notice and had to leave at mid day. No mention was made to me before I left by the Department representative chairing the meeting, Brian Kelly, the current Director of Student Services, that the Department wished to again discuss autism intervention training. Despite not being on the agenda and despite not being mentioned while I was in attendance as the Autism Society representative or otherwise receiving any notice of intent to discuss it, an autism training proposal was discussed after I left.

Although the Department complains about expense it has sent teachers to receive autism training in North Texas even though a quality training program, as asserted by Dr. Larsson, is available right here in Fredericton. The union representing TA's has opposed the UNB-CEL training because of the entrance and completion requirements and the seniority claims of older Teacher Assistants. Some of their members are unable to enter or complete the program. The Department in a recent discussion with me acknowledged the Department's concern about TA's not being able to complete the UNB-CEL program.

Apparently Department educators share the CUPE union views that the seniority interests of Teacher Assistants are more important than ensuring that qualified, capable people work with autistic children in New Brunswick schools. CUPE officials have brought grievances on behalf of untrained Teacher Assistants seeking to work with autistic students ahead of UNB autism trained TA's. The Union has recently informed some UNB autism trained TA's that the Department of Education does not intend to continue the government commitment to training Teacher Assistants at UNB-CEL. In the view of the Department officials it is apparently OK for people who can not complete autism training at UNB to work with autistic children.

The other vested interest involved in undermining the NB commitment to a real education of autistic children is the AutismPro Internet autism program offered by Virtual Experts Inc. AutismPro has lobbied extensively and was included as part of the training proposal presented by Department Educators as an alternative to UNB-CEL training. It was marketed to some parents via the Department of Education which emailed them to tell them in very positive terms about the program availability. AutismPro is an interesting concept but there is little quality evidence that the program itself is an effective evidence based autism intervention let alone that it can assist in training of otherwise unqualified Teacher Assistants and Resource Teachers.

Fighting vested adult interests has always been a challenge for parents seeking effective, evidence based treatment and intervention for our autistic children here in New Brunswick.

Unfortunately it appears that our autistic students will once again be sacrificed to adult interests.

autism

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