NB'ers with Severe Autism Disorders Are Not Included in New Brunswick's "Inclusive Community"

New Brunswick's "inclusive" "community living" model is not a bridge to a better life for adults with autism disorders.  There are huge gaps in the model.  Group home staff are not autism trained and are not professionally supervised.  Those who don' fit in, including those with severe autism disorders are excluded, banished to live in psychiatric hospitals in New Brunswick and outside the country.

New Brunswick tells the world that it is "inclusive" and talks incessantly about our "community living".   In fact if a child, youth or adult suffers from a severe autism disorder they are not included in a community, they are excluded, in some cases literally excluded from New Brunswick, and sent next door to the State of Maine.  Desperate ad hoc measures are resorted to, sometimes at great public expense.   Instead of building a modern, autism specific educational and residential care and treatment facility for New Brunswick adults with severe autism disorders they are sent to live out their lives in psychiatric hospitals. 

The group home system staffed with untrained personnel described in the second article below, the Toronto Star article, remains the same today.  The homes are not appropriate places for persons with severe autism disorders. Even some moderately affected by autism can not function in these locations. The NB civil servant quoted in the Toronto Star article that follows this comment said the group home system in place then, 9 years ago, worked well "for most people".  "Most people" 9 years ago did not include, and most people today, does not include youth and adults with severe autism disorders. 

Community living for New Brunswickers with severe autism disorders does not exist.   Following are 2 reported examples stretching back 9 and 11 years of how our so called inclusive community has treated, and continues to  treat, NB autistic youth and adults with severe autism, 2 examples which highlight the need for the residential care, treatment and community centre envisioned by NB autism expert Paul McDonnell : 

A.  11 years ago members of the Autism Society New Brunswick including the father of an adult son protested at the Centracare institution in Saint John where the man's autistic son was living:

PARENTS DEMAND RELEASE OF AUTISTIC MAN FROM PSYCHIATRIC HOSPITAL FREDERICTON, New Brunswick, Canada:

[NOTE: I have removed from the article the actual names of the father and son at Centracare  and of a mother advocate and son no longer publicly active on autism issues, and substituted non representative initials -HLD]

Parents with autistic children confronted New Brunswick's Family and Community Services Minister, Tony Huntjens, on July 25 and demanded the release of a 21-year-old autistic man being held in a psychiatric hospital in Saint John.

"This is the most difficult thing I have ever faced," says AB, who is trying to get his autistic son, GB, out of Centracare, a psychiatric hospital in Saint John. His son has been there for more than a year and AB says he hasn't been given a reason why. "I cannot believe that this kind of lack of compassion and this kind of atrocity will go on so long as it has gone."

Other parents of autistic kids from Fredericton, Moncton and Miramichi came to support AB. But they say their fight goes beyond freeing GB.

"We here today are a group of parents with autism. We live, eat and breathe autism. We know what the struggles are, but as you well know, the incarceration of GB into Centracare is totally unacceptable," said Shirley Smallwood.

AB and his supporters walked from the legislature to Family and Community Services offices. They confronted the Health Minister, who says its takes time to solve problems. "I'll try to intervene and work with the education system and the parents to see if we can come up with a solution."

The province has set aside Canadian$2.8 million for treating autistic children under the age of five. The group of parents want to meet the Minister again to discuss how treatment can be extended to an older age and be covered by Medicare. Hutchins has agreed to meet AB on July 28 regarding his son. GB.

The protesters claimed that the mental-health facility was not well-suited to the needs of autistic individuals and that GB'S scondition was deteriorating.

GB was placed in Centracare by the Department of Family and Community Services in March. The move was against the wishes of his parents and against the advice of health specialists, the group claimed.

New Brunswick does not have a mental-health facility specifcally designed to treat autistic individuals.

AB said his son was now a shell of his former self, after living in an open Centracare ward. "We see death in his eyes ... every week when we go and visit him," AB said on July 25. "His eyes haunt us." The group planned to take its protest to the Family and Community Services offices on Queen  Street. The parents also want the government to deliver a form of treatment called Applied Behavioural Analysis (ABA) to autistic sufferers in the province.

The Tory government has promised to make the service available to children aged two to five, but the parents argue that is not enough.

One local mother, NL, said the treatment could cost $40,000 a year. Her six-year-old son, TL, is too old to access the services, which still have not been made available to autistic children.

NL said the service was already available in five other Canadian provinces: Newfoundland, Prince Edward Island, Ontario, British Columbia and Alberta.

The treatment had been shown dramatically to improve individuals' autistic disorders, she said. "I don't want to see any other children or families go through this," NL said.

There are roughly 1,000 individuals with autism in New Brunswick.

AB said the group would keep protesting until the Tory government released his son from Centracare. They have collected a petition with 800 signatures supporting GB's release, and they intend to have the petition tabled in the legislature after a new sitting begins next week.

A Liberal critic, Michael Murphy, has promised to take up GB's case
in the legislature.

(Sources: CBC; The Daily Gleaner, July 25, 2003)

2. Nine years ago a 13 year old boy was housed, temporarily, on the grounds of the Miramichi Youth Correctional Centre in a visitor's apartment.  The boy was purportedly sent to Maine aftewards to the Spurwink centre.  9 years later the same inadequate system that brought national notoriety to New Brunswick is still in place.

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital 

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre. Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick" Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't." 

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution." Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him. "This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department. "He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents. This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day. Johnson said she does not know any details of his care. 

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada. He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder. "If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder. "We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people. "We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case." The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents. A Spurwink representative did not return a phone call from the Toronto Star. Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.

New Brunswick's group home community model does nothing to help those with severe autism disorders and even some moderately affected by autism.  We can not pretend that it does. What is needed, what has been needed for more than a decade, is the model described in 2010 by Paul McDonnell:

Paul McDonnell, September 2010

"Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with 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.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.  Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."  (Bold highlighting added - HLD)

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.