Foundation of New Brunswick Autism Success Is Being Abandoned

New Brunswick, Canada, like most jurisdictions, has some gaping holes in respect of autism services delivery. But there have also been some significant successes  due largely to the UNB-CEL Autism Intervention Training Program and Dr. Paul McDonnell who was a leading force in the establishment of the UNB-CEL AIT Program. While the UNB program is still being utilized for some specific purposes it is being abandoned for cost reasons and to satisfy competing adult interests, particularly in education. 

Adult residential care and treatment in particular is brutally bad here in NB with many severely autistic adults living in group homes with untrained staff and other inadequate resources.  The most severely affected autistic adults live in psychiatric hospitals and some live in other make shift accommodations, at least temporarily staying on general hospital wards and shipped out of the province.  Two young men were sent several years ago to the Spurwink facility in neighboring Maine, USA,  where at least one is believed to still be residing.  

Although not perfect there have been some successes here in NB in early intervention and provision of autism trained education assistants and resource teachers. The foundations for those successes, as highlighted very well in a Brunswickan news article, have been the UNB-CEL Autism Training program and Dr. Paul McDonnell, Clinical Psychologist and Professor Emeritus (Psychology).  Sadly, our provincial government is largely moving away from using the excellent UNB-CEL Autism Intervention Training program to train early intervention workers and education assistants and resource teachers for our schools. 

Our provincial government has recently approved the provision of in house, on the job, training for early intervention workers in our government approved early intervention agencies of which there are seven in our province.  One or two of these agencies may be able to provide some level of quality training but it is highly unlikely that all seven agencies will be able to meet a quality training level.  The move away from early intervention autism training by UNB-CEL is a serious setback for New Brunswick children with autism disorders.

At the same time New Brunswick has already been abandoning UNB-CEL Autism Intervention training for education assistants and resource teachers in favour of, once again, in house training.  It took some strenuous advocacy by parents of autistic children to obtain a commitment by our previous governments to provide UNB-CEL autism training for our education assistants and resource teachers working with autistic students.  Well placed people in the Education Department, in particular a gentleman named Robert Gerard, objected to the UNB training as being a "Cadillac" service.  Instead the department offered a number of in house training options none of which called for entry qualifications, testing as a requirement of course completion and in some instances no timeline for completion.  

It is my understanding that our government has sent some teachers to obtain BCBA qualifications in the US, and that they will be involved in some capacity with in house training of education assistants and resource teachers.  In house training however has inherent drawbacks. Lack of independence of those providing the training, who will report to a number of Department bureaucrats will be one of those drawbacks. The CUPE local which represents education assistants, and Teachers Association for the teachers, will likely be involved with and possibly interfere with, the conditions and qualifications for training.  There are already reports of a collective agreement  arbitration award which rejected a posting requirement for a UNB autism trained education assistant to work with an autistic student.  I have been unable to confirm that information though as a request made to the Department several weeks ago for a copy of the award has not been fulfilled despite a follow up last week. 

Our present Conservative government has chosen to abandon the quality UNB-CEL training of front line workers in early autism intervention agencies and schools.  Next will come a report by Dr. Gordon Porter and the New Brunswick Association of Community Living both of which have opposed the individualized instruction of students with autism in favor of Dr. Porter's everybody in the mainstream classroom inclusion illusion.

The autism success for which autism parents fought so hard in this province for so many years is eroding before our eyes. In all honesty this is what I expected with the current administration which has such close ties to Dr. Porter's "everybody in the mainstream classroom" inclusion philosophy.  Dr. Porter was part of the advisory team which assisted Premier David Alward in his transition to office after the last provincial election.  Minister Jody Carr and government members Jack Carr and Daniel Soucy all have backgrounds in the NBACL which has opposed attempts to provide one on one ABA based instruction to some autistic students in quieter school environments outside the mainstream classroom.

The abandonment of the UNB-CEL Autism Intervention training and the renewed influence of Dr. Gordon Porter and the NBACL in the provision of education services does not bode well for the future of New Brunswick's autistic children and students.  The challenge of bridging the gap in New Brunswick's adult autism residential care and treatment has always been huge. It is unlikely to be tackled in any meaningful way until a new government takes office in several years time.

Alward Transition Team Member Gordon Porter's Policies Harmed & Discriminated Against NB Children With Autism

"You people should be thankful for what you have"

The preceding statement was made by David Alward transition team member  Gordon Porter an Order of Canada recipient, former chair of the NB Human Rights Commission and godfather of New Brunswick's extremist "everyone must be educated in  the mainstream classroom" model of inclusive education, speaking to Autism Society New Brunswick representatives Dawn Bowie, a registered nurse, and mother of a son with autism and me, Harold Doherty a lawyer and father of a son with autism during the Wayne MacKay inclusive education review several years ago.  Mr. Porter was visibly angry with me, and with autism rep Dawn Bowie during a session of the review where we tried to inform him, and others present, that parental experience and research did not support his vision that all children benefit from mainstream classroom inclusion as a place of instruction.  He was upset that we were questioning the  extreme inclusive education model that he introduced in New Brunswick schools decades earlier and he dismissed anything we had to say.  He was contemptuous of our experience, our knowledge and any contribution we had to make. He did not want to hear that his extreme everyone in the mainstream classroom model is not appropriate for all autistic children. Dr. Goron Porter dismissed our contributions with the words "you people should be thankful for what you have".

We tried to tell Gordon Porter, and others during the MacKay  review,  about different ways of learning and different methods of teaching autistic children than those employed in the mainstream classroom. We tried to tell him that autism is a spectrum disorder, that some children with autism will in fact thrive in the mainstream classroom, others can benefit from the mainstream classroom for parts of their day and that for others the mainstream classroom is not appropriate at all and can even cause harm.  Gordon Porter .... and  Jody Carr's wife Krista Carr  ... who was present during the review as  a disability representative did not want to hear what we had to  say.

I tried to tell Gordon Porter, Krista Carr, and other mainstream classroom extremists, about my son's experience with the mainstream classroom for his first year of school when he would come home every day with self inflicted bite marks on his hands and wrists, that the biting occurred as a result of Conor being ovewhelmed by the mainstream classroom environment by the instruction he did not understand. I tried to tell them that the biting was reduced dramatically, almost entirely, when Conor was removed to a separate so called segregated area of the school for his instruction joining other students in common areas when appropriate for  Conor

 Mr. Porter introduced in New Brunswick's education system  an extreme version of inclusive education which insists that ALL children must receive their education in the mainstream classroom with their chronological peers.  It is based on the philosophical belief that all children regardless of ability or disability benefit from placement in the mainstream classroom.  It is NOT an evidence based approach to educating children with autism disorders.  The Gordon Porter Everyone in the Mainstream Classroom model of inclusive education does not work pure and simple. It has nothing to do with the realities of a child's abilities or challenges.  It is simply the faith of one man, Gordon Porter, and his cult like following which includes Jody Carr, Krista Carrr and Jack Carr. 

Gordon Porter's extremist mainstream classroom vision of inclusive education does not recognize the specific challenges faced by some children with disabilities, including some children with autism disorders. When Gordon Porter began, decades ago,  imposing his vision on NB schools autism was not known to the world at large.  While autism was known by some researchers as far back as Kanner in 1943 and was mentioned in the DSM II it was not identified in the DSM, the Diagnostic and Statistical Manual used by psychiatrists in North America, until the DSM III in 1980 well after the Gordon Porter Era had begun in NB.   

Dr. Gordon Porter knows nothing at all about autism disorders or the various challenges faced by many autistic children in a school environment.  During the MacKay Inclusive education review he did not want to learn either.  He did not want me or Dawn Bowie to speak about autism because we were also pointing out that his sacred cow, his extremist vision of inclusive mainstream classroom education did not work for those who were in dire need of assistance. Dr. Gordon Porter who has received awards from around the world did not want to hear evidence from people, Dawn Bowie and Harold Doherty, who knew much better than he, that his vision has actually harmed some autistic children, some of whom are sent home after his model fails them. So the very distinguished Dr. Gordon Porter, like his disciples Krista Carr, Jody Carr and Jack Carr, simply dismissed us and told us that "you people" should be thankful for what you have.

David Alward's Conservative platform in the recent election campaign was written be a committee chaired by Gordon Porter disciple Jody Carr who will be named as a cabinet minister, probably in Education or Social Development, in the Alward government.  Mr. Alward's embrace of Gordon Porter and his extreme inclusion model of mainstream classroom inclusion for all is a very ominous but clear sign that dark days are ahead for the children with autism who have made made much progress recently in NB schools.

Following is a comment I wrote on this blog 3 years ago about Gordon Porter and the discriminatory aspects of his extremist, non-accommodating vision of inclusive education:  

Tuesday, October 16, 2007

New Brunswick Human Rights Commission Guidelines Discriminate Against Autistic Students

The New Brunswick Human Rights Commision has adopted new guidelines to accommodating students with a disability in New Brunswick schools - New Brunswick Human Rights Commission, Guideline on Accommodating Students with a Disability. Unfortunately for some New Brunswick students with Autism Disorder the guidelines themselves fail to accommodate their disability and in doing so discriminate against some students with profound Autism Disorder. The guidelines fail to accommodate by creating a "norm" or presumption in favor of mainstream classroom placement even though, for some autistic students, the mainstream classroom in not an appropriate place of learning, can be overwhelming to environmentally sensitive autistic children and can be result in dangerous, self injurious behavior.


When the NB Human Rights Commission says that mainstream classroom placement is the norm education officials will quite understandably feel that it is necessary to place all children in the classroom. Essentially this "norm" will push students into the classroom who should be in a different, quieter, less busy location within the school in order for them to learn, and to not be overwhelmed. For those school districts who do not want to spend the money from their budget to accommodate more individualized instruction necessary for some autistic students placing them in the classroom without individualized instruction by autism specific trained Teacher Aides will be a cheap solution, as it has been in the past. And the presumption or norm created by the HRC will assist them in justifying their decision.


New Brunswick schools have, over the past 30 years, been dominated by an extreme inclusion model which saw all children dumped in the mainstream classroom without proper support and without regard for the individual conditions of some children with disabilities such as some severely autistic children. The result has been disruption in the classroom, failure to learn by some children, and in some cases, including my profoundly autistic son, dangerously self injurious behavior. Fortunately, over the past several years, the rigid ideological approach of the classroom inclusion for all philosophy has given way in some instances to an evidence based approach which requires examination of what actually works for each child. Educate the child in the way he or she learns best, in the environment in which he or she learns best. An evidence based approach is consistent with human rights policies by requiring an examination of the disability issues presented by the individual student. This evidence based approach was promised by the Province of New Brunswick Inter-Departmental Committee that examined autism services in New Brunswick between 1999 and 2001.


The IDC Report issued in November 2001, disclosed the already known fact that there were at that time very few autism specific services available in New Brunswick. The most significant accomplishment of the IDC Report was that it recommended an evidence based approach to provision of autism services. The three departments that sat on the IDC were Health, Family Services and .... Education. In fact, since that time there have been some to an evidence based approach being adopted in some New Brunswick schools.


My own son, profoundly autistic, was removed from the mainstream classroom, at our request, after he repeatedly came home from school with self inflicted bite marks on his hands and wrists. He was overwhelmed by the classroom. To the full credit of school, district, and Department officials they looked at the evidence and agreed to place Conor in a separate room for his instruction for most of the day. The education officials accommodated my son's disability by looking at his actual condition and educating him in an environment suitable for him in light of the realities of his autism disorder.


During the MacKay Review of Inclusive Education Autism Society NB presented a position paper for educating autistic students which called for an evidence based approach. Teaching children how and where they learn best in light of their actual condition. As one of the autism representatives I spoke on numerous occasions about the need for an evidence based approach for autistic students. For some autistic students the mainstream classroom is the appropriate learning environment. For others, including my son, it is not. This evidence based approach is supported by research including Mesibov and Shea (1996):


The concept of full inclusion is that students with special needs can and should be educated in the same settings as their normally developing peers with appropriate support services, rather than being placed in special education classrooms or schools. According to advocates the benefits of full inclusion are increased expectations by teachers, behavioral modeling of normally developing peers, more learning, and greater selfesteem. Although the notion of full inclusion has appeal, especially for parents concerned about their children's rights, there is very little empirical evidence for this approach, especially as it relates to children with autism. This manuscript addresses the literature on full inclusion and its applicability for students with autism. Although the goals and values underlying full inclusion are laudable, neither the research literature nor thoughtful analysis of the nature of autism supports elimination of smaller, highly structured learning environments for some students with autism.


This information was present throughout the Mackay Inclusion review process. In one session I attempted, along with ASNB Education Rep Dawn Bowie, to speak specifically about autism issues and the need for an evidence based approach by which autistic students are educated in a location, whether it be in the mainstream classroom or elsewhere, according to the realities of their individual conditions. My comments were met dismissively by a New Maryland school official who asserted that we were not there to talk about autism. They were also met with angry opposition by New Brunswick Human Rights Commission Chair Gordon Porter who was present and who told me and Mrs. Bowie that "you people should be thankful for what you have ". Mr. Porter then proceeded to talk about how bad it was in the Special Education system in New Brunswick many years ago and how the inclusion model was a very substantial improvement.


Given Mr. Porter's prominent role in putting the inclusion model in place in New Brunswick, and given his strong personal views, it is not surprising that the Human Rights Commission which he chairs has issued Guidelines which create a presumption in favor of classroom inclusion for all students. It is also not surprising in that the New Brunswick Association for Community Living was tasked by the Department of Education with holding professional development days for New Brunswick teachers to explain the recommendations of the MacKay Inclusion Review. The NBACL is a fierce advocate for the total inclusion model. The NBACL has paid staff who persistently lobby for the full inclusion model. An example are the awards they hand out to teachers in New Brunswick who best demonstrate inclusion practices in New Brunswick schools. The NBACL, in hosting the inclusion professional development days for teachers asked Gordon Porter to be the keynote speaker at the event. A request by ASNB to speak at the event, to speak with the teachers about autism, and the need for an evidence based approach, was rejected by the NBACL.


Mr. Porter and NBACL are both strongly committed to the full inclusion model and that commitment to a philosophy of classroom inclusion for all is reflected in the norm espoused by the new Human Rights Commission guidelines. The promotion of that norm by the Human Rights Commission will put even more pressure on teachers and school officials to put all students in the classroom. The promotion of that norm is contrary to the evidence based approach promised for autistic persons in the IDC Report and it is contrary to the duty to accommodate the individual differences of students with disabilities, particularly some students with profound autism disorder.


It was precisely that failure to accommodate individuals with disabilities that led Yude Henteleff QC to describe the full inclusion model as discriminatory in a paper he presented to the Canadian Assocation for Community Living in 2004. Mr. Henteleff has represented individuals with a variety of different disabilities including autism, deaf and hard of hearing,
aspergers, Tourette's syndrome, attention deficit hyperactivity disorders, developmental
disability, physical disability and the learning disabled. He has been the legal counsel for the Association of Parents of Children with Autism in Manitoba and has been associated with the Learning Disabilities Association of Canada. In The Fully Inclusive Classroom Is Only One Of The Right Ways To Meet The Best Interests Of The Special Needs Child Mr. Henteleff argued that the full inclusion approach is in itself discriminatory by failing to accommodate individual disability based differences. At page 2 he states:


It should be abundantly clear, having in mind the foregoing statistics, that for children
who suffer from emotional, mental, behavioural, cognitive, sensory, physical, expressive
language, visual and auditory difficulties (and often a combination of some of the foregoing), it is simply not possible to meet their diverse needs in one environment. One shoe simply cannot fit all.


Indeed, total inclusion is a discriminatory concept because it limits the environmental choices, which groups of children and youth with differing difficulties have the right to make in their best interests.


I am completely dedicated to the public school system. I believe it is an integral part of
whom and what we are as Canadians living in a democratic society. That means a place where all children are welcomed - regardless of their gender, sexual orientation, ethnicity, colour, religion, physical or mental condition. In other words, the public school system is a place where the social contract guaranteed by the Charter and Human Rights Codes is fulfilled. That social contract is that every individual is entitled to equality and to be free from discrimination.

However, schools being a welcoming place regardless of gender, ethnicity, colour, religion, physical or mental condition, namely inclusivity, is far different from what is described as "full inclusion" in the general classroom. Full inclusion falls far short of guaranteeing equality.

Mr. Porter, the Commission, and the NBACL which all advocate for full inclusion will argue that establishing a norm does not mean that all children must be kept in the classroom at all times and that their disabilities are accommodated. Their argument fails to take into account the pressure this will put on parents and educators to place children in the classroom first and to ask questions later, contrary to an evidence based approach and contrary to an accommodation of the child's real needs. Some parents, will not have a professional background to rely upon when dealing with the education system. Many are talked down to by educators. When told that the classroom is the right option for their child they not be inclined, or able, to challenge that position. With the Human Rights Commission creating a presumptive norm in favor of the classroom inclusion option there will be no realistic choice for the parents to consider in deciding how, and where, their child, severely autistic or otherwise should be educated.

The full inclusion model limits choice as Mr. Henteleff points out. The persistent efforts by the NBACL and its inclusion lobbyists to promote the full inclusion model has in practice limited choice for some parents and their autistic children who might be better served in a quieter environment outside the mainstream classroom. Mr. Porter, who has been a significant part of that push for full inclusion, and who is now the Chair of the New Brunswick Human Rights Commission, has presided over Commission guidelines which will reinforce the presumption of full classroom inclusion - to the detriment of some autistic children.

Autism in NB Under an Alward Conservative Government: Rough Trail Ahead?

I am not convinced that the polls, and the media echoing those polls, are correct in predicting a majority government under the David Alward Conservative Party of New Brunswick.  If they are though the next 4 years could see New Brunswick children and adults with autism  traveling on a very rough trail.

There is nothing in the party platform or the public comments of Mr. Alward or Conservative party members to indicate any knowledge of the seriousness of autism disorders or the increasing numbers of persons, now 1 in 110, who carry an autism disorder diagnosis. During an election period priorities are set, in the form of promises made, which will mark the path ahead.  Unfortunately for New Brunswick preschoolers requiring autism specific early intervention, students requiring accommodation for the realities of their specific autism condition, and adults with autism still living in psychiatric hospitals and general hospital wards, their  needs have not been deemed worthy of comment by the Alward Conservative team members.

Even more ominous for New Brunswickers with autism at least two possible members of an Alward Conservative government would be Jody and Jack Carr, the brothers with close ties to the New Brunswick Association for Community Living. The NBACL has done much good work for many with disabilities in New Brunswick. But it actively opposed the specific accommodations for New Brunswick students with autism which have been put in place in New Brunswick and has not followed an evidence based approach to accommodating autism specific needs.

NBACL philosophy dictates that the best place for all students, regardless of the challenges or disabilities of the individual child, and contrary to research and experience of some severely autistic children, is in the mainstream classroom.  NBACL has  steadfastly opposed the type of accommodations made for many autistic children, including my son Conor, during the last four years.  Conor loves attending his neighborhood school where he can go to general areas of the school but receives his autism specific ABA based instruction in a quieter area where he can focus on his learning and is not overwhelmed by the demands of the mainstream classroom. This type of reasonable accommodation was opposed by the NBACL organization in which the Carr family has been very prominent. Hopefully such autism accommodating education gains will not be jeopardized if the pundits prove correct and an Alward-Carr government is elected.

While gains were being made in preschool intervention and autism accommodating education, the Liberal government also held discussions with autism advocates over the past four years about  modernizing the residential care system for youths and adults with autism disorders.  The essence of those autism submissions is summarized in the advice offered by New Brunswick autism expert Dr. Paul McDonnell on his  CBC web site commentary Autism Services Needed for N.B. adults:

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes.

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

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"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," he writes.

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

  
The McDonnell model of adult autism residential care and treatment is exactly the type of concept that was being discussed with the Liberal government of Shawn Graham.  The Conservative party has shown no inclination in the current campaign to engage in any meaningful discussions about autism disorders. The past history of prominent Conservative candidates Jody and Jack Carr promises more community based philosophy and cliches but no understanding of, and no willingness to reasonably accommodate,  the  specific needs of those with autism disorders.


If the pundits are correct there could be a rough trail ahead for children, students and adults with autism disorders and their families.