Thursday, December 02, 2010

Long Term Autism Care in New Brunswick: An Open Letter to the Complex Needs Co-Chairs

December 2 2010

Co-Chairs Bernard Richard and Shirley Smallwood 
Consultation Process for Centre of Excellence for Children
and Youth with Complex Needs

Dear Mr. Richard and Ms Smallwood

I am writing you this open letter to address what I believe is  a fundamental flaw in the well intentioned complex needs consultation process that you co-chair. I do so even despite the respect I have for both of you.  The flaw consists of ruling out, as you did in your opening remarks at the Fredericton Inn, any "institutional" recommendations.  The flaw consists in taking a buzz word approach to addressing the real life challenges presented by children and youth with  with complex needs. This approach   implicitly praises solutions which mention "community" and  mocks realistic needs based discussion of a centre as old fashioned "bricks and mortar" thinking.  The flaw consists of believing, contrary to the evidence, that all children and youth with complex needs will ultimately recover well enough to live in an undefined "community" setting.  

This unrealistic "community" philosophy has dominated thinking in New Brunswick for decades and is in fact responsible for  forcing youths and adults with autism disorders and other challenges into psychiatric care  hospitals after the inadequate group homes either can not or will not take them.  Any discussion of developing realistic, long term care needs of severely challenged youth and adults with autism has met with dismissive rhetoric  as took place at the Fredericton Inn and subsequently at the Connecting the Dots pep rally at McLaggan Hall.  Over several years of autism advocacy I have encountered the rhetoric of the inclusion philosophy adherents and have seen it prevent candid discussion of serious issues. I heard that same rhetoric from you at the Fredericton Inn Mr. Richard when you declared that you would not make "institutional"  recommendations.  I heard it again during the Fredericton Inn consultations when the discussion table to which I had been assigned was joined by NBACL President Clarence Box who sat down and immediately declared that we had to get away from  "bricks and mortar" concepts. I heard the rhetoric again  at the Connecting the Dots Pep Rally at McLaggan Hall at UNB when you too spoke of moving past "bricks and mortar" thinking.  Such rhetoric is dismissive and harmful to the interests of those who, ultimately, need bricks and mortar facilities in which to live decently and securely  and receive the expert care they need.

With great respect I have no illusions about the complex needs consultation process. Your recommendations are unlikely to  address the long term needs  of persons like my son now 14 who is severely autistic with profound developmental delays.  Your recommendations are unlikely to address the needs of the autistic individual who has been living in Spurwink for several years. Your recommendations are unlikely to  address the needs of youth  and adults with autism disorders who have resided in hospital wards, hotels and even at the Miramichi youth correctional centre.   

I offer this correspondence with  my family and other families like the Michaud  family featured recently on  CBC  in mind.   The Michaud's, who I have met,  are loving and caring parents who have faced a challenging situation in raising and caring for their son with many severe challenges including Asperger's and violent behaviour as was described in the feature.  The Michaud family courageously appeared on CBC television and asked for long term care facilities to help their son and others facing similar challenges.  They spoke honestly about the violence they and their children have lived with in their home. 

The system in place in New Brunswick, a system dominated by community inclusion philosophy,  has not provided real life, evidence based solutions to help the Michaud family and other families facing severe challenges in raising autistic children, and other children with complex needs,  as they enter adolescence and adulthood.   The flaw in your thinking is that you fail to recognize that it is the community inclusion philosophy and its powerful advocates, including Order of Canada recipient, former New Brunswick Human Rights Commission Chair,  and now Premier David Alward's transition team advisor Gordon Porter,  which have prevented development in New Brunswick of modern, community based long term care solutions for youth and adults with autism disorders and other complex needs. With great respect you appear to be poised to recommend curing problems by recommending more of the same philosophy that has done so much to create those problems.

If you look at the CBC web site you will find an article featuring  Dr. Paul McDonnell which praised New Brunswick's early intervention and school based autism programs but also spoke to the need for an autism centre of excellence one which would  include the ability to provide long term care for those autistic persons who will not be able to live in community based facilities.  I believe Ms Smallwood is well aware of the leading role played by Dr. McDonnell, a clinical psychologist and retired psychology professor,  in building New Brunswick's preschool and school based autism service delivery model that has received recognition and praise from such experts as Eric Larsson of the Lovaas Institute and David Celiberti of the Association for Science in Autism Treatment.  Dr. McDonnell stated:

"What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.

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 behaviorally trained supervisors and therapists.

Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities."

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.

According to the most recent CDC estimates 1 in 110 persons have an autism disorder diagnosis.  The recommendations of Dr. McDonnell, a New Brunswick autism expert knowledgeable about autism realities in New Brunswick,  should be part of any recommendations for youth with complex needs that involve autism disorders.  If you are not going to address these serious challenges in a meaningful way, as Dr. McDonnell has done,  I would regretfully submit that  you will be doing  a serious disservice to many youth and adults with autism disorders ...  people that I do believe you want to help.


Harold L Doherty

cc. Facing Autism in New Brunswick


Eric Fischer said...

To me it seems Dr. McDonnell is describing a system similar to the one in place, known to me, for severe and extremely disabled children in Holland. Because of its centralized "pedagogical" centers which are the regional administrative hub for all aspects of government branches. This required not money, mind you, but rather that government branches give up certain spheres of influence FOR THE BETTERMENT of the fragile population it was meant to serve.
Still I think in the struggle for proper facilities for Autism, justly motivated and trained professionals are wanting, good salaries are not a government priority. Private fundraising and grass roots movements are essential, no one can expect the government to truly change their limited perspective.
Another issue, one that many seem afraid to enter into, fearing divisiveness within the community of disability they belong to is that as in disabled children, as a generic group the needs of those at the extreme end of disability/Autism spectrum, have vastly different needs, usually requiring an exponential investment of time, training and money.

Anonymous said...

I think this is an example of how devalued those with complex needs are. I am all for community living for those who are not too fragile, but these "noninstitutional" policies do nothing to serve those with extreme needs. It may be politically correct to say we are "getting rid of institutions" but it does nothing to solve the problems. Look at elderly people in nursing homes. There are many who are far less dependent and fragile than a teenager with severe neurodevelopmental disabilities and nobody chastizes families or governments for "puting them (elderly)in a nursing home". The families of some of these elderly are not forced to look after their elderly at home, yet a family with a youngster with extreme complex needs is told it is better to be community based, have all kinds of people entering your home, etc. The option should exist to place these people in a long term care facility that PROVIDES GOOD CARE. I think the community living is encouraged partially by finances...of course it is cheaper...but the people making these policies have to look at individual problems and not lump everyone in the same boat. There would be a lot of noise if governments started closing down numerous old folks' homes and told the families to look after all these people at home. The mild to moderately disabled advocacy groups have rightfully supported THEIR OWN right to community based living while unfortunately neglecting the complex needs of the very severely disabled who often benefit more from a structured environment/therapies in a long term care facility. The disability advocates are NOT WALKING IN THE SAME SHOES AS THE MULTIPLY CHALLENGED FRAGILE POPULATION and it is grossly unfair to believe these people are fair advocates to the extremely challenged. Some people do not improve no matter how many therapies etc are thrown at them. In the extremely elderly, they are not forced to do a lot of these "therapies" ,yet I have watched a blind, mute, terribly spastic man being held down to have his limbs "stretched" (didn't work anyway) while all the while groaning and grimacing. Thank goodness the doctor came and ordered some medications to calm him down and ordered a stop to this "therapy". I've read about young children on stretchers attached to ventilators with tubes sticking out various orifices being transported to SCHOOL while all the while moaning and groaning. Would this person not be better off in a long term care facility??