Autism Disorders, Intellectual Disabilities and Institution Closings from Australia to Canada

Photo and caption from www.theage.com.au

 
It's all so simple.  Close the evil institutions.  Institutions evil.  "Community" good.

One flew over the cuckoo's nest?.  Burn down the cuckoo's nest.  Replace it with ... "community".  But what does "community" mean? 

Will the "community" provide an alternative residential facility which can  provide decent, secure living with any required treatment? Will family members of severely disabled persons with intellectual disabilities, autism disorders and other developmental disabilities be  confident in the community's  ability or willingness to provide a real, healthy and safe alternative for their loved ones residing in institutional care?.

In Australia the movement to close institutions continues as it does here in Canada but some caring  family members are fighting these ideologically driven closings.  In Relatives fight to keep centre for disabled open theage.com.au tells the story of Sandra and Noel Bates and their intellectually disabled 45 year old son Craig who resides in an institution scheduled for closure:

''The closure of institutions is ideologically driven,'' says Noel Bates, 77, president of the Colanda Parents and Friends Association. ''We're not pro institutions, we're pro better services for the disabled, including upgrading the facilities here. Colanda is 35 hectares of beautifully laid out parkland, a beautiful environment. It has newer facilities [than Kew Cottages had], better staff and processes.''

Mr Bates' son Craig, 45, suffers from Angelman's Syndrome and has, his father says, ''the intellect of an 18-month-old''. He suffers from seizures, cannot speak, or care for himself. He is unsteady on his feet and does not know his own strength when he reaches out to hug his mother, Sandra.

Although their doctors told the Bateses in 1966 to send their baby away and forget about him, they kept Craig at home until he was eight. After two years at Kew Cottages, he was admitted to Colanda the year it opened, 1976, and has lived there since.

''It was much, much better compared with what was available at Kew,'' says Mr Bates. ''It was an upmarket facility - it still is, for that matter.''

But despite Colanda's bucolic gardens, solid brick units and honourable reputation, many in the disability sector say it should be shut as soon as possible, and the residents integrated into the community, like the residents of Kew Cottages.

A 2008 report on Colanda for the Department of Human Services noted the relatives' satisfaction with the quality of care, but concluded that the routines of a large-scale institution restricted the residents' ''individual choices … and their quality of life''.

''They should close it yesterday,'' says Kevin Stone, executive office of the Victorian Advocacy League for Individuals with Disability.

''As far as I am concerned, it belongs in a previous age. The tragedy is that these are the people time forgot.''

The Colanda institution, where Craig Bates lives,  is targeted for closure even though family members are satisfied with the quality of life it provides their loved ones who live there.  The rhetoric of closure does not necessarily guarantee an alternative.  Family members of those who live within such facilities, people like Sandra and Noel Gates are motivated by concern for their family member not by rhetoric and ideology. They want to make sure that their son Craig has a decent place to live and that he will receive the care he needs. Community ideology and rhetoric does not provide the assurances they seek.

Here in New Brunswick, Canada I was one of a  group of community and government members who voted, unanimously,  at a meeting to discuss the future of an institutional facility in Campbellton New Brunswick, to keep the institution open.  I did not do so because I want my 15 year old son with autistic disorder and profound developmental delays to live out his days there after we could not provide his care.  I  voted to keep it open, as did the other representatives present, because there is currently no alternative for those severely affected by autism disorders, intellectual disabilities and other  disorders whose conditions do not permit them to live in our group homes.  "Community" cliches, rhetoric and ideology can help those who follow such scripts to feel good about themselves.  They don't provide real places for people with severe challenges to live and receive the care they need.

Close the institutions? Absolutely ... once  real and appropriate alternatives are available.

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.  

Adult Autism Reality: Where Do Severely Autistic Adults Live After Their Parents Die?

Where do severely autistic adults live after their parents die?

It is a question that gnaws at many parents with severely disabled children. At the same time  attempts to find answers to that question are often met with protest and even hostility by other parents who fear and loathe the very concept of institutional care.  That tension appears to be present in a Milton Georgia where city council zoning change to permit development of a facility to provide assisted living care for autistic adults faced what 11alive.com  described as "ardent" opposition:

"A city council meeting Monday night became the center of a hot-button debate about the treatment of those with autism.


The Milton City Council approved the rezoning of a chunk of Deerfield Parkway to become a transitional facility for adults with autism -- including a vocational school for students more than 18 years of age and an assisted living facility called Watercolors Transition with 72 studios.


But it didn't come without ardent opposition from advocates and parents in the autism community, who spoke out against the project.


"It is ripe for abuse and neglect," said Rita Young, Director of Public Policy and Education for AADD, "and for the behaviors to really escalate."


Several parents said they found the idea counter-productive, essentially encouraging those with autism to turn away from the rest of the society. One added, "I find it offensive."


But Rick Swanson, the architect of the facility that would be among the first of its kind nationally, says the research he's done -- including numerous interviews with those in the autism community -- has found massive support for the project, some of which came from supporters in Milton Monday evening."

I participated a couple of weeks ago in a public consultation process being held by the office of the Ombudsman/Youth Advocate here in New Brunswick.  The question of where my  severely autistic son will live when I can no longer care for him, and after I am dead, was on my mind while I  attended  as a parent of an autistic child who has been active in autism advocacy in New Brunswick for over a decade.  The consultation was intended to gather public input on a centre for youth with complex needs. When the current, and highly respected,  Ombudsman/Youth Advocate spoke he quickly informed those present that the recommendations made by his office would not include a recommendation for a  residential institution. OK fine but where do youth with complex needs live if not in an institution?

The fact is that, at least here in New Brunswick, some youth with complex needs can not because of their specific challenges live with family or in group homes where the expertise to provide proper residential care and assistance does not exist.

Group homes in New Brunswick often lack the trained staff and professional expertise to provide for the needs of young people with severe autism and other disabilities.  For several years we have wrung our hands in this province over the issues surrounding residential care for youths and adults with autism disorders. But we have not developed a viable set of alternatives for autistic youth and we have not responded at all with new adult autism  residential care and treatment facilities.

I have visited the institutional facilities at Centracare and Dalhousie Regional Psychiatric Hospital.  I do not want my son with severe Autistic Disorder to live in those institutions after I die or become incapable of caring for him.  But what alternative will he face, where will he live, when I am dead?  We currently have severely autistic adults, like my son, living in psychiatric hospitals in New Brunswick, or shipped out of the province, even out of the country, because we have no realistic living and care alternatives available for them.

Feel good buzz words and cliches like "inclusion|" and "community" will not provide the care my son and other severely autistic adults need in order to live a decent life after I am dead.  My son will require residential care in a facility which provides for his physical security and his ability to enjoy life; with staff that have appropriate autism intervention training and access to professional assistance. Outside of the psychiatric hospitals no such facilities exist here in New Brunswick.

Close the institutions?  Yes, absolutely.   But only after appropriate alternatives are available to provide for the residential care and treatment needs of youth and adults with severe Autistic Disorder and other serious disorders and disabilities.  Feel good buzz words do not provide those alternatives.

Important Autism Reminder: There Are Autistic Persons Living In Institutional Care, Let Us Not Forget Them

It is a fact that does not appear to have permeated the consciousness of CBC and other mainstream media but there are autistic persons living in institutions in Canada. These autistic persons are not likely to appear on CBC television proclaiming that they do not want to be cured. They will not appear on CBC television proclaiming the joys of being Posautively Autistic. For that the CBC's autism journalism dilettantes would have to actually visit such an institution and observe these autistic souls and their actual lives. Pretty scary stuff for the CBC autism journalists who prefer to get their autism education at a Toronto art gallery autism project.

The CBC would prefer to ignore the severely autistic and feature repeated interviews on CBC TV and radio with their favorite autistic person, High Functioning Autistic, Michelle Dawson. If need be they will go to the US and speak with persons with Aspergers Disorder like Ari Ne'eman Washington Insider and self appointed spokesperson for all persons with autism even though his diagnosis is actually Aspergers Disorder. But our delicate autism journalists at the CBC will not visit the institutions in Canada or the US where severely autistic persons live out their existence when parents die or can no longer care for them.

The bottom photo is the Restigouche Regional Hospital in Campbellton, New Brunswick and the top shows the Centracare facility in Saint John New Brunswick. I have visited both facilities and seen what life means for autistic persons in institutional care. If the CBC and its intrepid journalists need directions I would be happy to provide them. I will not hold my breath waiting for the CBC to realize that Michelle and Ari and Alex and Amanda and Estee do not present a full view of the autism spectrum. I will not wait anxiously for the CBC to seek direction to the facilities shown above.

I will ask anyone reading this blog though to remember the autistic persons living in institutional care. For them life is not Posautively Autistic.

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Autism Awareness and Severely Autistic Adults

April is Autism Awareness Month in the US.

Here, in Canada October is officially Autism Awareness Month but living next door to the US media giant many Canadians receive more media coverage during April than October. Given the state funded CBC's obsession in the past few years with promoting the Neurodiversity, "WE don't want a cure", ideology of some persons with HFA and Aspergers Disorder that is not necessarily a bad thing.

But whether the coverage arises from Canada, the US or the UK, it is very difficult to find news or features about persons on the severely autistic end of "the spectrum", those whose diagnoses are not in doubt, and who are doomed to lives of dependency, some in high security community residences and some in full scale institutional care. Contrary to some of the loopy rhetoric out there severely autistic persons do not reside in institutional care and then become autistic. They are there because their autistic deficits are so severe that they can not live safely in the community. There are some autistic adults who require institutional care for their own safety, security and well being.

If I missed a recent news article discussing the plight of the severely autistic, particularly severely autistic adults, amongst the thousands of Autism Awareness Month features, please feel free to forward to me a link.

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Autism Reality - Australian Dad Pleads For Help For Institutionalized Adult Son

An Australian Dad is pleading for help for his autistic teen aged son who has been residing in a psychiatric care facility for the past two weeks after suffering an outbreak of aggression and hallucination. The problem is a lack of facilities with trained personnel in the Australian city of Victoria who can deal with his son's deficits. His son is in a seclusion room in the facility with no routine, no structure - essentially incarcerated. Chris's story in Australia differs little from similar stories in New Brunswick, Canada.

Swanston Centre Geelong Hospital

Here we have a smattering of group home facilities run by private operators and a psychiatric hospital (Centracare). I have been to Centracare in Saint John, New Brunswick and saw an adult autistic male in barely sufficient hospital garb in a seclusion room with a wet floor, just as his father had described seeing him on a previous visit as we drove to the facility.

The conditions there are much as described by this Australian Dad and just as heart wrenching. After Centracare our Province of New Brunswick has sent autistic youths to reside on the grounds of a youth correctional facility and exported autistic youths and adults to residential treatment facilities outside the province and even outside the country in neighboring Maine, USA.

For some autistic youths and adults, particularly those with actual Autism Disorder, such institutional life is their future.

Dad's plea for help with autistic son

Michaela Farrington

18Jul07

TEARS filled Wally Hannam's eyes yesterday as he described watching his autistic teenage son ``pacing like a caged animal'' in Geelong's Swanston Centre.

The Belmont father said his 16-year-old son Chris had been in the psychiatric care centre for two weeks, after he began hallucinating and became agitated. But he said his much-loved teenage child did not belong in a facility designed to provide acute psychiatric care for adults.

``It's so inappropriate for Chris to be there,'' Mr Hannam said yesterday, ``But he's stuck there.

``He's been there now for 13 nights.''

Mr Hannam is campaigning to have Chris moved to a facility for young people, where medical staff were used to caring for people with autism.

He was horrified to learn there wasn't a bed available anywhere in Victoria in a facility that could provide for Chris' needs _ his autism and his mental illness.

``The seclusion room where he is at now is driving him out of his skull, because he's locked up,'' he said, ``He doesn't understand.

``With autism, you need structure, you need routine, you need quiet.

``But yesterday, there were patients in there hitting the walls, banging to doors, screaming.

``It's an appalling situation.''

He said Swanston Centre staff had tried hard to make Chris comfortable, but they were just not equipped to help him.

Mr Hannam has devoted his life to caring for Chris, who also has an intellectual disability.

Until recently, the 16-year-old was happy at home with his pet chooks, climbing trees, riding his bike, going bird watching with his dad and chatting to the neighbour over the fence.

But he began hallucinating in recent months and became unsettled.

Mr Hannam sought medical help for his son, who had lost interest in everything.

``It's really taken hold of him. It's like it has robbed him of his personality,'' Mr Hannam said.

``It's heartbreaking.''

But while doctors searched for the right treatment, Chris grew more aggressive, lashing out, until Mr Hannam could no longer cope.

He agreed to admit his son to the Swanston Centre for a day or two until a bed in a more appropriate facility became available.

Two weeks on and the family is still waiting.

Barwon Health's clinical director of community and mental health Dr Tom Callaly yesterday agreed the centre was not the best long-term solution for Chris.

He said Barwon Health was seeking more appropriate care options.

But an exhausted Mr Hannam has begun to despair.

``I just want to pull the kid out of there now, but I realise that would just make things worse.''

http://www.geelongadvertiser.com.au/article/2007/07/18/5496_news.html