Adults with Severe Autism Disorders: Do Canadians Give a Damn?

Taylor McNee, photo from CTV

In Ontario the family of 18 year old Taylor McNee is fighting for a place for him to live.  The CTV,  to its credit, is covering this story in detail. It isn't the feel good, kumbaya, autism is beautiful fluff that too often passes for autism awareness and disabilities policy. It is the story of a son who is a joy to his family but is also prone to rages resulting from his autism disorder (Fragile X syndrome) and developmental delays.  Hospitalized for several months after one such episode he now must either return home where he is a risk to his younger brother or have nowhere to live.  It is a story familiar to parents of severely autistic adults including here in New Brunswick.  The Taylor McNee story as reported on CTV:

"Taylor McNee is an 18-year-old with autism who been living in a hospital room for five months because there is nowhere else for him to go. And his case is once again highlighting a growing problem: who will take care of autistic children once they become adults? Taylor has a genetic condition called Fragile X syndrome, which has led to both autism and developmental delays. His family says he is a sweet, loving boy who is usually very easygoing. But Taylor is prone to rages and can suddenly lose control.

Five months ago, one of the rage incidents led to injuries that required him to be taken to Toronto Western Hospital. He's long since recovered but has been there ever since. The hospital says Taylor needs to leave, since he no longer needs medical care. But his mother says it's not safe for him to come home and that he risks injuring his younger brother, Ethan, who also has a genetic developmental disorder."

The Taylor McNee story is common elsewhere in Canada including here in New Brunswick where severely autistic adults live in inadequate group homes lacking the professional expertise and adequately trained staff, life in a psychiatric hospital and a variety of ad hoc arrangements.  Efforts to establish an intermediate level facility close to autism expertise in Fredericton have been spurned both by government and by the New Brunswick Association for Community Living which dominates all decision making involving persons with disabilities in New Brunswick.  

As in education so too in adult autism residential care.  The NBACL offers feel good cliches about community and inclusion but resists efforts to establish an intermediate level of care with the expertise and accommodation of the challenges of the severely autistic developmentally delayed population.  The NBACL officials, Order of Canada and Order of New Brunswick ribbon collectors and political friends feel good. The severely challenged autistic population and their families are left to fact the reality of live in hospitals ... if they are lucky.

Here in New Brunswick, and elsewhere in Canada, we must abandon reliance on feel good cliches and fluffy philosophies and start focusing on the realities of life for severely autistic developmentally delayed adults with the aim of providing them with appropriate facilities in which to live out their lives in decent conditions. 

Simple Solutions Will Not Help New Brunswick Students with Autistic Disorder and Other Complex Challenges

New Brunswick's Gordon Porter and his associates with the NB Association for Community Living are now in charge of New Brunswick's inclusive education system.  The Gordon Porter Inclusive Education Review taking place in New Brunswick will impose their beliefs on NB students with disabilities including those with severe, complex disorders like my younger son who has severe autistic disorder with profound developmental delays.  The review itself  is unlikely to do anything except reiterate the Porter/NBACL inclusion beliefs which have not changed in 30 years.  Although present for one of the Porter/NBACL review sessions in Fredericton it was made clear that the review did not want to hear from me; a known critic of those beliefs.  

Any doubts about what Mr Porter means by inclusion are put to rest by his own admission, in a recent presentation in Newfoundland,  that inclusion in Porter World is simple, very simple .... everybody, regardless of the complexity or severity of their condition,  regardless of their level of understanding or learning ability, regardless of their behavioral or sensory challenges belongs  in the regular classroom.  For Gordon Porter, in his own words, inclusion is that simple.   As the father of a severely autistic, profoundly developmentally challenged son I wish my son's realities were as simple as Gordon Porter's beliefs. But they aren't.  What follows is  Gordon Porter/NBACL inclusion in Mr Porter's own words:

CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

 Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

My son's autistic disorder challenges are not simple.  The extreme, everybody in the regular classroom inclusion model, is simple because evidence to the contrary is ignored by those who have pushed it.  That is a simple fact. 

Learning Disabilities Associations (Canada, Ontario) Do Not Support the Porter/NBACL Full Inclusion Model

During the MacKay Inclusion Review the Autism Society of New Brunswick opposed the full or extreme inclusion model which Gordon Porter and the NBACL is now in the process of again imposing on New Brunswick students.  I have commented many times expressing my personal opposition to the inflexible full inclusion beliefs which have caused harm to my severely autistic son and others for whom the mainstream classroom is not an appropriate educational environment.  This is not just an issue though between some parents of autistic children and the NBACL/Porter Full Inclusion true believers. The Learning Disabilities Associations of Canada and Ontario have also opposed the full inclusion model which limits placement options, causes physical harm to some, and deprives some of a real education: 

LEARNING DISABILITIES ASSOCIATION OF ONTARIO 

POLICY STATEMENT ON EDUCATIONAL INCLUSION FOR

STUDENTS WITH LEARNING DISABILITIES 

The following policy statement of the Learning Disabilities Association of Canada (LDAC) was adopted by the Board of Directors of the Learning Disabilities Association of Ontario (LDAO), as recommended by the LDAO Legislation and Policy Committee, on November 17, 2008. 

Learning Disabilities Association of Canada (LDAC) Policy Statement on 

Educational Inclusion for Students with Learning Disabilities (presented to the 

LDAC Executive Committee in February 2005, the LDAC Board of Directors in June 2005 and ratified on November 26, 2005). 

STATEMENT

The Learning Disabilities Association of Canada (LDAC) does not support full 

educational inclusion or any policies that mandate the same placement, instruction, or treatment of all students with learning disabilities or the idea that all students with learning disabilities must be served only in regular education classrooms at the exclusion of all other special education placement options. 

LDAC believes that full inclusion, when defined this way, violates the rights of parents and students with disabilities guaranteed by the Charter of Rights and Freedom and Human Rights Codes which guarantee education equality and freedom from discrimination and rejects the arbitrary placement of all students in any one setting.  

LDAC supports the availability of a continuum of education services as prescribed in an individual educational plan for each student with learning disabilities to ensure success and must be flexible enough to meet the changing needs of students with learning disabilities by:  

1) Providing a range of options and services and diverse learning environments 

(placements) to meet the specific needs of each student;  

2) Providing the most enabling environment for that student that will effectively meet the student’s best interests socially, emotionally, behaviourally, physically and educationally; and, 

3) Focus on what is in the best interest of the student and, in that context, consider all the needs of the student as expressed by the student and his/her parents and that of their consulting professionals.  

RATIONALE 

Because each student with learning disabilities has unique needs, an individualized education plan and placement must be tailored on individual strengths and needs. For one student, the plan may be provided in the regular classroom yet for another student, the regular classroom may be an inappropriate placement and may need alternative instructional environments, teaching strategies, and/or materials that cannot or will not be provided within the context of the regular classroom environment. The severity and nature of the individual needs should determine the alternative teaching strategies, accommodations, resources, supports and placement required.

The LDAO repeated their opposition to a mainstream classroom inclusion only policy in a February 10, 2009 letter to Ontario Education Minister Kathleen Wynne.  The letter stressed the need for a range of placement options based on the needs of the individual student:

Inclusion is good when it means something more than placement in a common mainstream classroom. Inclusion is good when it does not deprive individual students with a range of education placement options that suitable for their needs.  Inclusion is good when it is evidence based on the best interests of the individual student.  Flexible inclusion is good.  

Inflexible, dogmatic, everyone in the classroom philosophy is not good.  It harms some students and deprives them of a meaningful, happy education experience.   Autism advocates in New Brunswick fought the extreme everyone in the mainstream classroom model during the MacKay and Ministerial Committee inclusion reviews.   We were successful in ensuring the enactment of an inclusive education definition by our Department of Education which recognizes that real inclusion means an approach which assesses the individual needs, abilities and challenges of individual students on an evidence basis.  

Now Gordon Porter and the NBACL, both of which oppose the evidence based approach,  are now in charge. They are effectively writing and enforcing their extreme mainstream classroom inclusive education for all policy for the Alward government.  Autism parents must be vigilant in resisting their back to the future philosophy and insist on an evidence based approach guided by our children's best interest; as radical as those concepts may seem to Mr Porter and company.  

It is not clear where the Learning Disabilities Association of New Brunswick stands on these issues but their counterparts in the LDA of Canada and Ontario have spoken clearly and their positions are consistent with an evidence based student centered approach.  Their clear, strong positions will be of great help in our efforts. 

Autism Education in the Era of the NBACL Inclusion Government

Premier Alward of New Brunswick acknowledges IRIS’ ‘Policy 

Making  for Inclusion – Leadership Development Program’

The New Brunswick Association of Community Living now determines inclusion and disabilities policies in the New Brunswick government with immediate repercussions in the  Department of Education and Early Childhood Development ... to the detriment of many children with autism disorders.  While always very influential in NB government education decisions the NBACL is now effectively in charge of disability and inclusion policies in New Brunswick schools. The ramifications for children and students severely affected by autism disorders and intellectual disabilities are very serious.  Independent, quality, autism specific training has been abandoned in favor of in house training and more and more pressure will be brought to bear on district and school officials to require all children receive instruction in a mainstream classroom even those for whom the mainstream classroom causes physical harm and disrupts their learning and development.

In the decade preceding the election of the Alward government New Brunswick made many gains in providing providing evidence based autism interventions to New Brunswick preschoolers and students over the decade preceding the Alward government election.  Those gains were provided via UNB-CEL Autism Intervention Training, a program recognized by US autism experts David Celiberti and Eric Larsson as a model for other Canadian and some US jurisdictions.  Those of us who advocated for these autism specific services were opposed strenuously by the very well connected and influential New Brunswick Association for Community Living.  Now, under the Alward government the NBACL is even more influential. NBACL actually sets Alward government disability policy and ensures compliance by Education officials from the Deputy Minister level down to the teachers and aides that deliver the programs.  Along the way the UNB-CEL Autism training has been dropped in favor of in house "training" and a renewed push for dumping all children in the mainstream classroom without regard for whether the classroom is the appropriate learning environment for them.  There is no room for flexibility or accommodation of children and students with severe autism disorders with intellectual disabilities in the NBACL Department of Education and Early Childhood Development. 

New Brunswick Premier David Alward has publicly acknowledged the role of the New Brunswick Association of Community Living related organizations in setting inclusion and disability policy in New Brunswick as was made clear on the community living organizations' IRIS site. IRIS is the Institute for Research and Development and Inclusion in Society. It purports to be the "research" branch of Community Living Assocations across Canada. The IRIS board of directors consists of present and former Community Living Association officials from accross Canada including former NBACL official Lorraine Silliphant.  In February 2012 IRIS spent a week indoctrinating high ranking New Brunswick education officials including Deputy Ministers and Assistant Deputy Ministers in the Community Living Association philosophy based policies of full mainstream classroom inclusion as was bragged about on the IRIS web site:

"New Brunswick Premier David Alward issued a letter Friday February 4th to all participants in the ‘Policy Making for Inclusion – Leadership Development Program’ that will be delivered in Fredericton by IRIS February 6-10 to senior officials with the Government of New Brunswick. The program is designed to assist policy makers achieve the government’s platform commitment to “enable New Brunswickers with disabilities to actively participate in all aspects of society and take their rightful place as full citizens.” With Deputy Ministers, Assistant Deputy Ministers, Human Resources Directors and Policy/Program Directors from across government participating in the week-long series of leadership development workshops, major strides will be taken towards creating a public service in New Brunswick ready and able to deliver on the government commitment to people with disabilities. In his letter, Premier Alward thanked The Institute “for developing this program to inform our public servants on the latest research on disability and inclusion…” A core resource for the program is the guide to Disability and Inclusion Based Policy Analysis just published by The Institute."

Even without the indoctrination of high ranking government officials in a week long session of Community Living policies the NBACL exercised a dominant role in the NB government.  NBACL official Krista Carr is the wife of Early Education and Childhood Development Minister Jody Carr.  Minister Carr's brother Jack Carr, also a member of the governing Alward Conservatives, is a former NBACL employee. Gordon Porter, an icon of the NBACL and CACL organizations, was a member of the Alward transition team and is now conducting yet another inclusion review with the aid of NBACL friendly team members.  Only views consistent with the NBACL total inclusion beliefs are tolerated.  In the past high school principals have been trained by NBACL officials who handed out awards annually to teachers who exemplify best (as in NBACL compliant) inclusion policies.

Admittedly the cliches and buzz words sound good. Community Living Association spokespersons never tire of telling us how awful things were in the bad old days before they changed everything for the better.  The NBACL, the CACL, IRIS and other CLA groups never, ever, acknowledge the evidence of the harm they have caused to some people by their fanatical obsessions like total classroom inclusion for all.   My son with severe autistic disorder and intellectual disability suffered in a mainstream classroom.  Conscientious educators locally, who actually work with and know my son have accommodated him with a flexible inclusion model, a model which is now at risk in the NBACL Department of Education and Early Childhood Education era.  The NBACL aristocracy that sets and enforces inclusion policy does not mention evidence like my son's case, that contradicts their everyone in the classroom philosophy.

So too the total inclusion extremists pay no attention to severely impaired adults who can not live in an ad hoc, loosely monitored group home system make no mention of the adults with autism disorders and intellectual disabilities living in psychiatric facilities in NB.  Instead they pretend all is swell, give each other awards, pat each other on the back incessantly and fight efforts to establish or even discuss an intermediate level of residential care with professionally trained assistants and higher levels of security for those who need such interventions.

There is no evidence to support the policies of the NBACL which now sets inclusion policies for New Brunswick government departments including Education and Early Childhood development. The evidence based consideration of the  best interests of individual students is in serious, serious threat of extinction in the NBACL dominated Alward government era. Specialized training such as that provided by the UNB-CEL Autism training program is now gone.  Flexible inclusion policies such as that which have accommodated my son with autism specific instruction will be targeted.

The NBACL is in charge.

CBC: New Brunswick Lacks Residential Care for Adults with Autism

Emma Smith and CBC did a feature (at minute 23:40)  on last evening's news on the lack of residential care available for New Brunswick adults with autism.  I was interviewed along with some other parents and staff from the Autism Connections Fredericton community autism centre.  Paul McDonnell, Ph. D., UNB Professor Emeritus (Psychology), clinical psychologist and mentor to many parents of autism children, was also interviewed.  

Paul McDonnell is the autism expert who helped educate many parents of newly diagnosed autistic children, including me, about the benefits of evidence based interventions for our children.  He really has been the intellectual force behind the progress that New Brunswick has made in early intervention and education of NB children and students with autism.  While the progress in early education in particular, and in our schools to a lesser extent, has been significant, no progress whatsoever has been made in developing an appropriate residential care system for New Brunswick adults with autism disorders.  Paul McDonnell talks about the need for a high end facility, one which would incorporate a variety of arrangements to accommodate adults from different points on the autism spectrum.  He also points out that as much as $500,000.00 a year is being spent to provide care for just 1 New Brunswick adult with autism ... at the Spurwink facility in Maine.  He points out it would make economic sense to design and construct a facility which could be designed to provide community integration here in New Brunswick. 

The struggle for improved autism services in NB has been taking place in a serious fashion over the last 12 years. During that time activist parents advocated, argued, struggled and fought for evidence based early intervention for autistic children.  We had some success, albeit not total success, in obtaining 20 hours of government funded intervention for autistic children aged 2-5.  Some gains have been made in our schools although much, much more effort is need there. No progress though has been made for adults with autism in New Brunswick. 

Government drags its feet on adult autistic care for a number of reasons.  In my experience as an autism advocate it is easier to get public attention for the need to help children then it is to attract their concern over autistic adults. It seems to be a natural inclination for people to be stirred more easily to help children than adults.  There is also the fact that once in the care of government autistic adults are out of the public eye. Out of sight, out of mind. The government can, and will, cite privacy reasons of the autistic adult as a reason for refusing to disclose information about them.  The most extreme examples of the privacy issue being used in this way is taking place right now in Ontario where that government has sent its lawyers in to action to prevent disclosure of information in the two inquests, including the Ashley Smith and G. A.  inquests.  In those cases the government is arguing against disclosure of information about what happened to these two youths, purportedly to protect their privacy,  even though they are now dead. 

In New Brunswick a huge obstacle to development of an autism specific residential care and treatment facility is the opposition of the very influential NB Association for Community Living.  Community living cliches are pulled out at every discussion of adult care issues. "No bricks and mortar" solutions is the cry of the community living advocates who believe that all problems are solved by dumping adults, including severely autistic adults, into privately owned group homes.  The powerful and influential people who subscribe to this ideology are well connected to cabinet ministers, the Human Rights Commission, the department of education, schools and school districts,  even the Ombudsman and Youth Advocates office. As long as we all go to bed at night repeating "community", "inclusion" and other cliches over and over again until we fall asleep all will be well.  But there will be no talk of "institutions' ... or any other facility that might be needed to help autistic adults.

No serious thought is given to providing the residential care and treatment that many with autism will require throughout their adult years. In fact active resistance emerges at events like the Ombudsman and Youth Advocate office's recent  Complex Needs consultations, in which I participated,  to any discussion of a facility that might provide the expertise, security and access to autism specific programs required by autistic adults.  

It is not cash that is preventing adequate residential care for autistic adults in New Brunswick. Huge sums are being sent to export our autistic adults to the United States. The "bricks and mortar" of buildings that might be necessary to provide residential care and treatment are not the problem either.  The real problem is the "bricks and mortar" that encases the thinking of the community living adherents who have subscribed to the same  ideology for decades and refused to consider the needs of severely autistic adults.  Their philosophy has ruled New Brunswick with an iron fist for decades even though the failure of that rigid philosophy is evidenced by the people with autism living on general hospital wards, in psychiatric institutions, in specialized facilities in Maine and other provinces, in hotel rooms and even on the grounds of youth correctional facilities. 

In truth we all want our children to remain as integrated as possible in our communities, as close as possible to our families.  As a parent though I know that talking about community and inclusion does not address the need of some autistic adults for expert care, for expert based continuing education and recreation opportunities and for security.  These requirements, for some, can not be provided in a small, privately owned group home. We need a facility close to autism expertise such as exists at UNB and at the Stan Cassidy Centre to provide appropriate life arrangements for our autistic loved ones as adults.   

The need is painfully obvious to parents who see their adult children sent to live in general hospital wards, psychiatric hospitals .... and facilities in another country.  New Brunswick needs to fill the gap between the inadequate group homes and hospital institutions and provide a modernized autism  facility to accommodate the needs of out adults with autism.  Here in Fredericton we have developed some behaviorally based autism expertise of note. It is time for the community living adherents who are so influential in our government institutions in New Brunswick to let go of their rigid and dated perspectives,  to loosen up and let the needs of autistic adults be addressed with modern evidence based solutions, with facilities that can provide security, expertise, education and recreation in as community integrated a manner as the circumstances served by those facilities  permit.  

Adult Autism Residential Care: Close the Institutions But First Provide An Alternative

My younger son Conor  is 15.  He is not a very high functioning, celebrity "autie" or "aspie".  My son actually has an Autistic Disorder with "profound developmental delays".   He is living a great life now, at home, with a Mom and Dad, who take incredible joy in his company and at school where he has been treated very well by school and district officials. His adult care prospects in New Brunswick though are grim and they are not getting any better as successive governments, Conservative and Liberal, have failed to face the realities of adult autism care. His prospects will remain grim until government and the powerful New Brunswick Association for Community Living face reality and fill the gap that exists for severely autistic adults in residential care ... the gap between inadequate group homes and life in a psychiatric hospital. 

New Brunswick has done very well in developing a leading model of early autism intervention service delivery.  My son's autism challenges have been well accommodated in school  although there is much improvement that could be made across the system as a whole especially in rural schools.  Not all New Brunswick autistic school children have received appropriate accommodation for their autism challenges. On the adult level New Brunswick has stood still, has twiddled its thumbs and done nothing to improve the adult autism residential care "system".

Conor is a great joy in our life but Conor's Autistic Disorder and  Intellectual Disability impose serious functional limitations on his ability to live and enjoy life to the fullest.   He is now 6 feet tall and growing.  Like his Dad at a much younger age he has a very powerful muscular physique.  With his serious challenges he will require, when his parents can not provide care because of old age or death, and for the rest of his life, full time, 24/7, adult residential care.  Currently in New Brunswick that usually means either a psychiatric hospital placement or placement in a home with staff who are not properly trained and without the security and expert supervision  his condition requires.  In some cases ad hoc arrangements such as placement in a hotel room or on the grounds of a correctional facility or export to another province or American state facility have been made.  The CBC in Autism services needed for N.B. adults spoke with New Brunswick autism expert Paul McDonnell:

"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," he said.

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."

Canadian governments, including successive Conservative and Liberal governments here in New Brunswick, have failed to provide adequate, decent residential care for adults with autism disorders.  A couple of years ago I attended a meeting at the Campbellton psychiatric hospital in Northern New Brunswick.  A major question to be answered was whether the facility should remain open or be closed.  The answer was put to a vote and the answer was unanimous: the psychiatric hospital must remain open until real alternatives are developed and in place.  I was part of that unanimous decision. I do not want my son to live in a hospital but I know he is unlikely to receive adequate residential care in a New Brunswick group home. 

 In 'What happens if I'm not around?' mother of autistic teenager asks"   journalist Michael Tutton, as part of an excellent series reporting the inadequacies of adult care facing many adults with disabilities  in Canada,  reports his discussion with a spokeswoman for the British Columbia Association for Community Living, an advocacy group for people with disabilities:

"Faith Bodnar, the executive director of the association, says it's ironic that the issue is unfolding in B.C. because it was a pioneer in promoting the shutdown of larger facilities for people with intellectual disabilities in the mid-1990s.

It also created a network of new living arrangements in the community, such as home-sharing where people with intellectual disabilities share homes with caregivers who receive monthly funding.

However, Bodnar says the association receives emails daily from parents who say the supports they need for their grown-up children aren't there.

"We are running a serious risk of people not having the supports to be safe in the services they have," says Bodnar.

"Our members are telling us that they're concerned that safety issues are developing."

The situation in British Columbia is only ironic to those who have believed that the solution to helping seriously challenged adults with mental health and developmental disorders, including autism disorders, is to simply close institutions and place everyone in community settings without accommodating their disability based challenges.  There is in fact a need for some residential facilities for severely autistic adults  to bridge the gap between community group homes and psychiatric hospitals as noted by autism expert Paul McDonnell.  For those most severely affected a center, integrated in the community but providing the expert care, educational programs, recreational services and security that those most severely affected by autism require is badly needed. Such a center will probably be needed for Conor. Such a center is not on the immediate horizon in New Brunswick though where a  highly influential and extremist community inclusion philosophy prevents any discussion, analysis or developmental of alternatives to our current group home/psychiatric hospital system of adult autism residential care. 

The New Brunswick Association for Community Living Centre of Excellence for Children and Youth with Complex Needs

I have participated in the current "consultation" process being conducted by Bernard Richard,  New Brunswick's highly, and justly,  respected Ombudsman and Youth Advocate purportedly aimed at developing recommendations for a centre of excellence for youth at risk and youth with complex needs. I was very upset to hear this good gentleman make remarks at the outset of his comments which appeared to rule out any type  of  recommendation of a   residential care facility for youths with complex needs. There was no recognition in his remarks of the reality faced by many youth and adults with severe developmental disorders and limitations who actually require residential care and treatment on a prolonged or permanent basis.   Unfortunately  Mr. Richard's remarks reflected the non evidence based  NBACL community inclusion philosophy whose adherents have steadfastly opposed evidence based treatment, education and residential care for children, youth and adults with autism disorders.

There was no recognition in Mr. Richard's remarks  of the need for permanent care facilities even though the evidence of such a need is living, and has been living for years, in hospital facilities of various types in Campbellton and  Saint John, New Brunswick. Some of this evidence, some of these people, including some with autism disorders, have even been exported out of the country to Bangor Maine.

Parents of such individuals do not WANT their youth and adult children to live in hospitals but there has been no decent, modernized, alternative residential care and treatment facility in New Brunswick. That brutal reality does not appear to be recognized in the current review by Mr. Richard who at a gathering last night, once again, repeated the cliches and feel good buzz words of the community living movement. 

The event last night was very much like a high school football rally with young people wearing DOTS T-shirts    playing music and encouraging those present to throw symbolic balls of rolled up paper into recycling boxes. Mr. Richard addressed the rally and talked about the bad old days of the Roberts facility, closed now for many years, which still dominates the thinking of those, including Mr. Richard, who subscribe to New Brunswick's failed community inclusion model. Mr. Richard, like NBACL President Clarence Box, who joined the discussion table to which I was assigned during the previous consultations, talked about moving past "bricks and mortar" concepts in his recommendations for a new Centre for Youths with Complex Needs.   

I don't know what kind of centre will be recommended that will not include bricks and mortars. The buildings in which Mr. Richard's office is located, the several buildings owned by the NBACL in NB are "bricks and mortar".  People need facilities to do many things ... to live, to work in their offices, to educate children...  to provide treatment ... and to provide a place in which to reside and receive treatment, in some cases permanently,  for some youth and adults with complex needs. The community inclusion model has prevented modernized habitable versions of such facilities from being developed in NB and it has simply ignored those who don't fit their belief based system and have had to be hospitalized or exported. 

It is the very feel good community living philosophy embraced by Mr. Richard which has caused the problem here in NB.  Mr. Richard spoke at the consultation meeting and again last night about how impressed he was with the "vision" of one of his expert advisers a gentleman from Ontario with no prior connection I am aware of to New Brunswick. What evidence the gentleman's vision is based on is beyond me to say. I suppose though  that visions, and philosophies,  do not require an evidence basis.

It is a problem Mr. Richard now appears poised to try and fix by applying more of the same failed philosophy that caused the problem in the first place.  I am sure Mr. Richard will recommend a visionary concept to serve NB's youth with complex needs. I am sure Mr. Richard, Mr. Clarence Box,  community living icon  Gordon Porter, and other subscribers to the community inclusion philosophy, will feel good about that vision.  I am happy for them. 

I am not at all sure though, with great respect, that Mr. Richard will recommend anything which really addresses some of the most important needs of youth with complex needs ... the need for decent, modernized and evidence based  residential care and treatment. 

Former Premier Shawn Graham, A Strong Advocate for New Brunswick's Autistic Children, Expected to Resign Today

Shawn Graham & Andy Scott with autistic children and parents at the

autism intervention and community centres in Fredericton in 2007

Canada News Service reports that NB Liberal leader Shawn Graham will announce his resignation this morning.  As a father of a son with Autistic Disorder, and an autism advocate for over 10 years, I will regret his departure.  Shawn Graham while official leader of the opposition, and then as Premier of New Brunswick, helped New Brunswick become as stated by David Celiberti, president of the Association for Science in Autism Treatment, a leader in provision of autism services. Premier Lord had begun the early intervention program for delivery of evidence based autism treatment to NB preschoolers and had begun the training of teacher aides at the excellent UNB-CEL Autism Intervention Training program but Shawn Graham was active in pushing for these programs and in expanding them very significantly.  The people of NB said goodbye to him as Premier and today he is expected to leave.  

There are as yet no signs that Shawn Graham's commitment to evidence based intervention, treatment and education for autistic preschoolers and students in NB, in learning environments which accommodate their individual best interests,  will be carried on by  Premier Alward. To the contrary Premier Alward, and his cabinet ministers, are heavily influenced by the feel good philosophy of community living icon  Gordon Porter,  a member of Premier Alward's five man  transition advisory team, who has been openly hostile to autism representatives advocating modern evidence based approaches to educating autistic students.  Hopefully the gains made for autistic preschoolers and students during Shawn Graham's term as Premier will not be thrown away during the next four years.

Some Autistic Students Do Well In The Mainstream Classroom and Some Do Not

KESQ.com in Palm Springs, California reports that an increasing amount of autistic students are leaving special education classes and integrating into mainstream classrooms. Educators in the area provide the support necessary and they recognize that the mainstream classroom does not work for ALL students with autism. They look at what works best for each student:

"In the past we had children undiagnosed in general education, coping or diagnosed incorrectly without the support needed," says Palm Springs Unified Schools District's Autism Specialist Sally Talala.

Entering into a traditional classroom isn't for every child with autism. Specialists say it takes a team approach to find out what is best for each individual.

The assistance team is growing. Parents, schools and specialists work together to place each child in the right class for their specific needs. They take a look at social skills, communication and behavior, integrating those with more mild cases.

Here in New Brunswick, in recent years, much has been done to further the education and well being of autistic students. Teacher assistants and resource teachers have been receiving autism specific training through the University of New Brunswick College of Extended Learning Autism Intervention Training Program. The autism specific training has helped provide many autistic students receive a real education. Some autistic students can receive their education in the classroom for all or part of the day.

Some of our schools have also begun to accommodate the needs of those autistic children, like my son Conor, for whom education in the general classroom for most of the day is an overwhelming, counterproductive and even harmful experience. They are taught in smaller, quieter, less busy areas where they can receive one on one instruction, by autism appropriate learning methods and with a curriculum suitable to their development level. They are also brought into the mainstream classroom for brief periods for activities within their individual ability ranges.

Despite this progress there are those in New Brunswick who insist that the mainstream classroom is the right place for all students. Their intentions are noble but their understanding of autistic children is lacking. Their beliefs are part of a philosophy of total classroom inclusion for all students that has dominated the New Brunswick education system for the past thirty years. The recent efforts to accommodate the needs of autistic students has been met with determined resistance by the total inclusion advocates who include the current Chair of the New Brunswick Human Rights Commission who was instrumental in promoting New Brunswick's total inclusion philosophy, the Executive Director and other representatives of the New Brunswick Association for Community Living, and some senior Education Department officials.

Despite the efforts of these very influential, well connected advocates of total mainstream inclusion progress has been made. There are people in government, in the Department of Education, school districts and schools who have made decisions in the best interests of autistic children notwithstanding pressure from the total inclusion advocates.

Hopefully those autistic children who can learn in the mainstream classroom will continue to be educated there while those autistic children for whom the mainstream classroom is not appropriate will continue to be accommodated in learning environments suitable for them in light of their autistic conditions.

Hopefully the best interests of autistic children will continue to prevail over the rigid philosophical beliefs of the total mainstream classroom inclusion advocates.

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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.

Full Classroom Inclusion for All is Discriminatory

Yude Henteleff QC is a distinguished lawyer and human rights expert whose detailed resume would represent a life time of accomplishment for several individuals. He is a founding member of a prominent law firm, has been legal counsel for Autism and Learning Disability Associations, been active as a mediator in human rights disputes, served on the Canadian Human Rights Commission and named to the Order of Canada. In November, 2004 he presented a paper at the Canadian Association for Community Living National Summit on Inclusive Education, Ottawa in which he asked "why full inclusion is being advanced in certain areas as the only way to effectively meet the diverse needs of all children with special needs." Mr. Henteleff provided a number of reasons for the emphasis on full classroom inclusion - including government cost consciousness. Full classroom inclusion is cheaper than providing a continuum of choices to accommodate all the needs of individual students with various disabilities. Mr. Henteleff also reviewed Supreme Court of Canada decisions in Law, Granovsky, Mercier and Eaton and concluded that "Imposing a standard, namely that the inclusive classroom meets all needs, is a perception not based on reality and is stereotypical. In other words, the standard takes the position that one environment meets the needs of all special needs children. By its very nature, such a standard is discriminatory,"

- Henteleff, Y. (2004). The fully inclusive classroom is only one of the right ways to meet the best interests of the special needs child. Paper presented at the CACL National Summit on
Inclusive Education, Ottawa, Ontario.

As the parent of a profoundly autistic 11 year old son I concur with Mr. Henteleff's conclusion. Conor is environmentally sensitive with severe communication deficits. Fortunately for my son when he returned from school with self inflicted bite marks on his wrists and hands the school and district officials were conscientious and cooperative in working out an accommodation to meet his needs. He has been educated in a separate quiet location and brought in to the mainstream classroom for limited periods of defined activity to interact with other students who also visit his area for interactive periods such as "reading buddies". Some other New Brunswick students with disabilities who might learn better in other or a mixed environment have not always been so fortunate.

As New Brunswick continues its review of inclusive education the advocates of the philosophy of full mainstream classroom inclusion for all continue their very aggressive lobbying to maintain the dominance of their philosophy over an evidence based accommodation of the needs of individual students with disabilities. The New Brunswick Association for Community Living performs many good deeds for persons with disabilities. It is also well financed and well connected in our province and advocates relentlessly for the view that all children benefit from full mainstream classroom inclusion. They have been the "partner and stakeholder of choice" for the Department of Education over recent decades. When the Mackay Inclusion Review development workshop days for teachers were held recently it was conducted as a partnership between the Department and the NBACL. Requests by the Autism Society to participate as an equal partner were ignored. The keynote speaker was Gordon Porter the distinguished Chair of the New Brunswick Human Rights Commission who was himself a driving force behind the adoption in New Brunswick education circles of the philosophy of full mainstream classroom inclusion for all. The NBACL hands out awards to teachers who exemplify "best practices" in inclusive education - meaning practices consistent with the NBACL view of full classroom inclusion. At present, the NBACL is aggressively lobbying politicians to protect the status quo of the full classroom inclusion model.

I know that the NBACL leaders are good people with good intentions. I ask them to consider my son's experience and those of other profoundly autistic children and the possibility that the aggressive promotion of the mainstream clasroom for all philosophy has created a presumption in favour of the mainstream classroom that is at odds with reality, is discriminatory and in some cases harmful to the child. Parents and educators should have choices available as they work out the best ways to accommodate and educate children with a diverse range of disabilities and needs. They should not be forced into an environment which is unhealthy and counter productive for them.