Tuesday, December 07, 2010

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.


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.  


Claire said...

Thanks for the mention, Harold. Thanks especially for all the excellent reference material.

Eric Fischer said...

I have to wonder, not mentioned in your article perhaps because the focus lies with government involvement, why professionals and parents came to you to thank you for speaking out.

I've been in that situation myself, with the end result that after being in the trenches with many other parents, I decided to withdraw my son from the only place qualified to take care of him, he being the acknowledged most severe case out of all attending while not a single other parent did so, despite their grumblings and dismay concerning a scandal which affected their children just as much, because it wasn't convenient.

When push comes to shove, people go around thanking others but you're going to need a lot more support than that.

I would hope that you tried to convince others to stand their ground as well. For what it's worth I commend your efforts.

J.Benson said...

Down here in Indiana, this is an issue as well. Blindly insisting on Inclusion appears to be on the way out, however funding for those separate facilities that have so long been ignored is low. Therefore, we have nowhere to send students if we change the way we do things. It is abuse to ignore the needs of a student, and too often that's exactly what's happening.

My theory is that there aren't
enough stakeholders. Our communities have to become invested in our children before they can be convinced to invest in our children. I'm not sure how one does that.

Karen Wallace said...

I have just found your blog and I look forward to reading older posts. I am an Art Therapist and I work with a lot of amazing children, some who have autism. Warmly, Karen