Autism, Inclusion and Community Living Philosophy in New Brunswick - Ignoring the Evidence Has Not Worked

I agree with the principles of  inclusive education and residential care when they actually accommodate the complex needs of many with autism and other disabilities. I do not agree with New Brunswick's extreme version of full inclusion and community living that pretends to, but does not actually, accommodate those needs. In making these statements I acknowledge that my son has been accommodated in NB schools. It has increasingly been brought to my attention that children of other less outspoken (for a variety of reasons) parents have not always been as fortunate in seeking accommodation for the challenges of their severely autistic children.

As I grow older, as I look ahead to the fate that awaits us all as human beings I look at what New Brunswick has to offer  for residential care and treatment for youth and adults with autism disorders and other complex needs and I am concerned, very concerned. I look at the review processes that have been conducted in education and in residential care including the current consultation process by the Office of the Ombudsman/Youth Advocate and I grow even more concerned that nothing will change, that the same philosophy pushed by the powerful advocates of extreme inclusion and community living policies that have provided cover for so long for our failures to address realistically the needs of youth and adults with autism and other complex needs will grow more entrenched in an era of global economic uncertainty and belt tightening. I  am fearful, outright fearful that my son will live in a psychiatric hospital or an inadequate, inappropriate group home environment.  I grow increasingly fearful that the happy, joyful life he has lived with his parents will not survive when we are gone.

These out rightly philosophical ideologies are not evidence based.  They do not accommodate the individual challenges faced by many that they supposedly help.  Those who are most in need of help are simply ignored by those who relentlessly push this model in NB education and residential care.  When children are sent home from school, including autistic children, because they suffered meltdowns in the mainstream classroom full inclusion models do not question their philosophy and how it might have contributed to the problem. When youth and adults, including some with Asperger's Disorder and Autistic Disorder, are sent to live in correctional centres, hotels, hospital wards and psychiatric hospitals and even exported out of the country, the community ideologues do not stop and ask whether the inadequate group homes, staffed with poorly trained personnel, and justified by their philosophy might be a big part of the problem.  

My disenchantment with this philosophical giant that has such a stranglehold on NB education, health and residential care for the disabled began when my son came home from the general classroom with bite marks on his hands and wrists.  Local school officials did respond and accommodate my son allowing him to work with an autism trained teacher aide in a quieter individualized learning environment. I have raised my son's example with full inclusion advocates at most of the major reviews in NB over the last several years including the Mackay inclusion review, the Ministerial Committee on Inclusive Education and the Dialogue on Education meetings that were canceled when Education officials tired of being challenged to provide evidence to justify the extreme full inclusion model.  My son's example was acknowledged but the implications ignored.

I have also attended meetings addressing adult residential care where the community living advocates paint horror pictures of institutional care while ignore the inadequacies and gaps in our youth and adult residential care system.  Worst of all the community living advocates simply ignore the failures of their own philosophy based ideology that rules this province.  They make no mention of the persons living in psychiatric hospitals except to pretend that somehow their philosophy is not to blame.  

The fact is that Autistic children with severe challenges are often simply sent home when they are unable to survive in the mainstream classroom panacea of the full inclusion philosophers.  Autistic youth and adults are sent wherever when the community living panacea of residential care fails, time and time again, to provide for their needs.  I am not alone in questioning the full inclusion, community living philosophies as inadequate, non evidence based failures to accommodate our most severely challenged. Throughout my participation in the various processes I mention above parents, professionals and teachers have come to me at different times to thank me for speaking up when many of them are unable to do so or are fearful of doing so.

There have been, and are, others who have questioned the full inclusion philosophy/panacea. I provide here some links to some others who have spoken up. It is not an exhaustive link but I encourage you to read these sources if you are sincere about addressing the education and residential care needs of the severely disabled amongst us.

1. THE FULLY INCLUSIVE CLASSROOM IS ONLY ONE OF THE RIGHT WAYS TO MEET THE BEST INTERESTS OF THE SPECIAL NEEDS CHILD - Yude M. Henteleff, C.M., Q.C.

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. p.2

2. Let's talk about inclusion, full-inclusion and community living - Claire, mother of a severely disabled daughter, teacher, B.A., M.A., blogger (LIFE WITH A SEVERELY DISABLED CHILD)

This is the reality that full-inclusion ideologues ignore. My daughter is not safe in a regular classroom. Others cannot handle the stimulation, others need one on one, pull-out programs to get ahead and fix a few glitches. Can I tell you, in all honesty, that I would not have wanted my Eldest to have had in her classroom as many challenged kids as most full-inclusion classrooms face today, because she would have been bored to tears and her education would have suffered. School is not only about socialization, it is about education. Kids learn in different ways, at different paces. I know this. I am a teacher. ... Children who are in separate classrooms can be included in outdoor activities, in gyms, in music programs, in assemblies. ... there are a million other creative ways of including without sacrificing safety, socialization and education....That's my position. It's not cheap. It's why full inclusion is favoured. It's cheaper...make no mistake about it.
...

The same thing is true about living situations for adults with disabilities. Some are very high functioning and can thrive with minimal assistance. Others need more. Some disabilties are SO severe, however, as to require people with specialized training, really big hearts and minds, and very specific environments. Community living, as in group homes with staffed with DSW's, is not always appropriate. For some, a residential environment is better.


What is a "residential environment"? Well, certainly not a cell block with cages, people chained to beds and toilets, living on straw, okay? Oh, and hosed down occasionally to keep the lice down, and mush that serves as food passed through little holes in the wall. For Chrissakes. Yet these are the images brought up by full-inclusion ideologues again and again. ... I followed carefully when Ontario blitz closed all it's institutions. I read far too many stories of the severely disabled dying soon after the move...after having lived for over 30 years in the institutions. I also read a number of stories of those with the most severe behaviours being kicked out and turned away from "community living" environments, leaving frantic families searching desperately for solutions. .... Some severely disabled, either physically, cognitively or behaviourally need really specialized services that cannot be realistically provided in a group home setting. It's just a fact. I would love to see a residence like that for my daughter when she is an adult. I think it's createable...I think there are such things around here and there...or parents get together and come up with creative ways of making something similar happen by combining their finances. In any case, it won't come cheap. And that is always the problem in the end. My kid's life is never worth what it takes to make her both happy and safe...unless she stays at home. But...if she lives longer than I can hold out, I will have to find her something. Who knows what will be out there when the time comes...but I would vote for a residence any day, if it were well run, beautiful and appropriate."

3. Full Inclusion: One Reason for Opposition - Donald B. Crawford, Ph.D., professor of special education at UW-Eau Claire

"The experiments prove that achievement is not helped if multi-age grouping is used to allow students to pursue their own ends or to let everyone work individually. Full inclusion advocates want precisely this kind of enviroment and wish to eliminate direct instruction of homogeneous groups of students, which they consider "lockstep" instruction. By supporting full inclusion all the time, advocates hope to make it impossible to do direct instruction anymore. This will have a negative effect on achievement of all students.

There are several reasons for opposing a policy of full inclusion even though that policy sounds like the "right thing to do" on first hearing. As has been stated earlier, one reason is because full inclusion of an extremely wide range of abilities into general education classrooms makes direct, systematic instruction nearly impossible. In addition, once full inclusion is implemented, teachers are forced to change their teaching methods to more child-directed, discovery-oriented, project-based learning activities in which every student works at his or her own pace. This has never produced high levels of achievement anywhere it has been tried."

4.a. The Costs of Inclusion - John MacBeath, Maurice Galton, Susan Steward, Andrea MacBeath and Charlotte Page, A study of inclusion policy and practice in English primary, secondary and special schools Commissioned and funded by the National Union of Teachers, Published by University of Cambridge, Faculty of Education.

4. b.School inclusion 'can be abuse'- BBC report on The Costs of Inclusion and Interview with Professor John MacBeath:


"Prof MacBeath told journalists: "Physically sitting in a classroom is not inclusion. Children can be excluded by sitting in a classroom that's not meeting their needs." ... "You might call it a form of abuse, in a sense, that those children are in a situation that's totally inappropriate for them." ... He and co-author Maurice Galton stressed their report was not "anti-inclusion ... What concerned teachers was whether schools could provide a suitable education for those with complex needs."

5. Re-open the Institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds - Bernard Rimland, Ph. D., Founder of Autism Society of America

New Brunswick has a duty to take care of its most vulnerable citizens.  Today it must fulfill that duty in challenging times. The economic and fiscal challenges facing this province are huge. We can not ignore these realities even if we wanted to do so. From the beginning of the election process until today experts have continually reminded us of the world's and New Brunswick's dire financial pictures. Those realities will limit the options available as we make education and adult care decisions for our citizens with extreme disability challenges.  But even if that is so we owe them a duty we owe all citizens, a duty we owe ourselves ... to speak honestly and to look at the evidence, to look realistically about how those decisions actually impact on persons with complex needs.

We must abandon feel good philosophy and rhetoric. We must speak honestly about what we will do, or will not do,  for our youth and adults with complex needs ... with severe disabilities.  

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Autism Outside the Mainstream Classroom in NB Schools - 2 Important Tools to Help Your Autistic Child

 If you are a parent of an autistic child in a New Brunswick school receiving ABA instruction outside the mainstream classroom, or  the parent of any autistic child who does not function well in the mainstream classroom (MSCR) environment, you will probably face increasing pressure to have your child educated in the MSCR as a result of the recent election of the  Conservative government.
 
Educators will be under increasing pressure, arising from the extreme inclusion philosophy, and influence, of  Cabinet Minister in Waiting Jody Carr and David Alward advisor Gordon Porter, to reduce the numbers of children receiving their learning outside the mainstream classroom.

If your child learns better in an environment outside the Mainstream Classroom you will have to be prepared to firmly, but politely, never losing your cool, and always remaining courteous, fight back against  pressures to place your child in the MSCR with Gordon Porter and Jody Carr directing, or heavily influencing,  education in NB .  There are two important tools available for you to use; A Framework for an Integrated Service Delivery System for Persons with Autism in New Brunswick from the Interdepartmental Committee on Services to Persons with Autism", November 2001 (The IDC Autism Report) and the Department of Education's Definition of Inclusion, October  2009. 

1. The IDC Autism Report, November 2001 -  Accepted Evidence Based Principle

Gordon Porter's vision of Full Mainstream Inclusion for all was born in NB  long ago and it's stranglehold on the best interests and education of our children has been weakened only by  strong , well informed, advocacy from parents with autistic children. Full inclusion is based on philospohy and belief but not on evidence and the key to resisting the full inclusion advocates who would take away the gains made by your autistic child is to fight back, fight back using evidence based arguments and the evidence based principle that was accepted by the New Brunswick government in the report "A Framework for an Integrated Service Delivery System for Persons with Autism in New Brunswick from the Interdepartmental Committee on Services to Persons with Autism" which was completed in November 2001.  In that report, in the Executive Summary, and in the treatment recommendations for  the Committee endorsed evidence based practices for the delivery of autism services in Health, Social Services and Education. In Numbered paragraph 4 of the recommendations the Committee stated:

4. That early competent intensive interventions based on empirical evidence of efficacy be available for pre-school children with autism.

2. Department of Education - Definition of Inclusive Education, October 2009 - Individual Needs Of The Child Should Guide Decisions Which Must Be Evidence Based

The focus on pre-school children with autism was expanded with the decision to train Teacher Assistants and Resource Teachers at the UNB-CEL Autism Intervention Training program. Some 500 such trained personnel are now working with NB students many providing ABA service which to date remains the only evidence based intervention for autistic pre-schoolers or students.  The quasi-government NBACL does not recognize the need for quieter areas outside the mainstream classroom will be necessary for some children with autism to learn properly, particularly those with ABA based instruction requirements. NBACL, with its insistence that all children be educated in the MSCR,  played a dominant role in the Ministerial Committee review of inclusive education practices  but despite that dominance the Committee accepted in its Definition  of Inclusive Education, 2009 that inclusive education and decisions to help children reach their full learning potential must be based on (i) the individual needs of the child and (ii) founded on evidence  in  its Definition of  Inclusive Education, 2009:

I. Vision

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and founded on evidence.

If your child with autism requires learning for all or part of the day  in an environment outside the mainstream classroom gather the evidence in support of your position carefully including medical diagnostic reports, assessment reports and recommendations from any professionals involved with your child.  Use that evidence to demonstrate your child's individual needs requirements.  Use the IDC Autism Report, 2001  and the Definition of Inclusive Education, 2009 to support your case.

Present your case calmly and courteously and be prepared in SEP meetings with your evidence and the above documents to help you. Good luck.

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Autism and Education: CACL Promotes Discrimination Against Autistic Children

The Canadian Association for Community Living, and its provincial counterparts like the New Brunswick Association for Community Living, have done much to help persons with disabilities. Unfortunately despite their many good deeds they have also, for many years, been actively and intentionally promoting discrimination against some children with Autistic Disorders and other children for whom education in the mainstream classroom is not in their best interests because of their disabilities.

The message of the CACL is clear, consistent, and made without regard to the best interests of some children: No excuses for educating children outside the mainstream classroom, no accommodation of children whose disabilities require alternative learning environments, no concern for the best interests of children, like some children with Autistic Disorder, if their best interests require education in a setting outside the mainstream classroom. No excuses, no accommodation, no concern.

As a parent who has long ago requested that my son with Autistic Disorder and profound developmental delays be removed from the mainstream classroom I am offended by the message, relentlessly pushed by the CACL, and here in NB by NBACL, that portrays any request to educate children outside the classroom as an "excuse". My son began his education in the mainstream classroom where he was overstimulated by noise and other conditions in the classroom. He would come home each day with self inflicted bite marks on his hands and wrists. Those bite marks, were evidence. Those bite marks were Conor's way of telling us that education in the mainstream classroom was not in his best interests.

Conor was removed from the classroom and educated primarily in a separate room for academic purposes. He also visits some more social settings for appropriate purposes and for defined activities with an Autism trained, very competent Teacher Assistant. He goes to the school gym (see videos on sidebar of this blog), the kitchen, the pool, the library, the cafeteria and so on but his academic learning takes place in a separate room.

Conor has not suffered socially. Although he does not generally inititiate conversation, and in fact has limited verbal skills, he has been well liked by many children over the past several years. I drive Conor to school and on arrival I have seen several boys and girls approach Conor to greet him, say hi and show real joy at seeing him. More than one child has actually sought Conor out at our home.

The "education system" has accommodated Conor's disability, his special needs. The educators we deal with have sought our input and worked to help Conor; taking into account the realities of his Autistic Disorder including the fact that Conor was overstimulated in the mainstream classroom, was learning a different curriculum using different methods than other students. Conor has received this accommodation because of some conscientious educators and because we fought to get that accommodation. We did so despite the NBACL which is very well entrenched and influential. NBACL carries the CACL message that says that such accommodation is wrong, that the benefit Conor has received is not a sufficient excuse for education outside the mainstream classroom. The CACL message is discriminatory, harmful and offensive.

CACL has been told in the past that the full inclusion model for all is probably discriminatory. In Canada discrimination can be direct, intentional discrimination, or it can result from a failure by service providers to reasonably accommodate the needs of persons with disabilities. Yude Hentellef,Q.C. has been legal representative for many disability organizations and persons with disabilities. In 2004 he presented a paper The Fully Inclusive Classroom is Only One of the Right Ways to Meet the Best Interests of the Special Needs Child at the C.A.C.L. National Summit on Inclusive Education in Ottawa, Ontario. Mr. Hentellef reviewed studies, and case law, which indicate that full classroom inclusion is not appropriate for all special needs children and stated:

Page 7:

"The Supreme Court of Canada has categorically rejected the kind of contextual analysis that rests on group stereotypes of what is presumed to be in the best interest of a group of persons, regardless of their disability. The proposal that full inclusion will meet the needs of all special needs children is such a group stereotype. In other words, what may be good for one group is therefore good for all groups, no matter their disability. The Supreme Court of Canada has rejected this approach, which, because of its very nature, is discriminatory. "

Page 8:

"To suggest that even with everything in place in the inclusion classroom, it will be the best place for all children regardless of their need, is group stereotyping at its worst. It denies the absolute right of special needs children to be placed other than in the full inclusion classroom, when their parents and qualified professionals view a different placement as one that best meets their interests. In Eldridge, a 1997 decision, Mr. Justice LaForest who gave the unanimous decision of the Supreme Court of Canada, stated that persons with disabilities have too long been subjected to insidious stereotyping.

For anyone to insist the inclusion classroom can be the best place for all children regardless of their needs is by its very nature stereotyping and discriminatory.

The CACL philosophy summarized in its recent "No Excuses "campaign is stereotyping and discriminatory. With the emphasis on "no excuses" it implies that concerned caring parents, and competent professionals, who seek education settings outside the full inclusion classroom for a special needs child are in some way morally deficient, making excuses instead of doing what is best for the child.

In New Brunswick the NBACL and other full inclusion for all advocates like Gordon Porter, the current chair of the NB Human Rights Commission, have insisted that their way is the only way. They have dominated NB education for more than a quarter century and they are celebrated around the world. What the world may not know is that our full inclusion model has in fact itself been discriminatory and harmful. In the past 10 years changes have begun to be made on the ground by activists parents of some special needs children, including some autistic children, by conscientious educators and by the undeniable evidence that education in the full inclusion classroom is NOT in the best interests of ALL special needs children.

Hopefully some day CACL, NBACL, and other promoters of the Full Inclusion for All model will come to their senses and cease trying to impose their deeply held beliefs over the evidence and over the best interests of special needs children.

Hopefully someday the CACL and NBACL will cease promoting discriminatory practices in education.

autism

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The Help Group - UCLA Autism Research Alliance

"Applied research is essential in furthering the development of evidence-based best practices for the effective education of children with autism spectrum disorders"

- Dr. Barbara Firestone, President & CEO of The Help Group and Vice Chair of the California Legislative Blue Ribbon Commission on Autism


On Monday, September 10, 2007, the UCLA Semel Institute for Neuroscience & Human Behavior held a special reception to mark the launch of The Help Group - UCLA Autism Research Alliance.

Los Angeles, CA (PRWEB) September 24, 2007 -- On Monday, September 10, 2007, the UCLA Semel Institute for Neuroscience & Human Behavior held a special reception to mark the launch of The Help Group - UCLA Autism Research Alliance. This spirited occasion was hosted by Dr. Peter C. Whybrow, director of the Semel Institute, and Dr. James McCracken, director, Division of Child & Adolescent Psychiatry at UCLA. The event was attended by UCLA and The Help Group colleagues, faculty and friends, and took place at the Semel Institute on the UCLA campus.

Autism spectrum disorder (ASD) is a complex brain disorder that strikes in early childhood, disrupting a child's ability to communicate and develop social relationships, and often accompanied by acute behavioral challenges. The Help Group - UCLA Autism Research Alliance is an innovative partnership between the two organizations dedicated to enhancing and expanding clinical research, education, and treatment into ASD, and to contribute to the development, greater understanding and use of best practice models by educators and clinicians.

Whybrow, McCracken, Dr. Barbara Firestone, President & CEO of The Help Group and Vice Chair of the Legislative Blue Ribbon Commission on Autism, and Dr. Liz Laugeson, Director of The Help Group - UCLA Autism Research Alliance, shared their remarks about this exciting endeavor. During the proceedings, Whybrow acknowledged Dr. Paul Satz, emeritus professor in the Semel Institute, for his pioneering efforts to develop The Help Group - UCLA Neuropsychology Program, which was established ten years ago, and Dr. Robert Bilder, professor & chief of medical psychology in the Semel Institute for his support of the ongoing collaboration between the two entities.

Whybrow gave a special tribute to Firestone, presenting her with an honorary crystal Bruin Bear in recognition of her vision, leadership and dedication to the development of the alliance. In her acceptance, Firestone thanked Whybrow, McCracken and UCLA colleagues for their commitment to the partnership. "Applied research is essential in furthering the development of evidence-based best practices for the effective education of children with autism spectrum disorders," Firestone noted. "Together, we look forward to opening new doors of opportunity to many more children and families living with autism."

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The Help Group
Christine Simmons
(818) 779-5312

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