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.

Respectfully,

Harold L Doherty

cc. Facing Autism in New Brunswick

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An Enhanced Autism Group Home System and Center is Needed to Fill the Gaping Gap in New Brunswick's Autism Service Model

In ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services" New Brunswick, Canada  was recently described by David Celiberti Ph.D., BCBA-D, President Association for Science in Autism Treatment as being a leader in the provision of autism services.

Responding to the referenced  title of a CBC article on the state of autism service delivery in NB Dr. Celiberti expressed the view, with which this humble father and autism advocate agrees, that  NB is a leader in providing evidence based effective preschool intervention and  education of autistic children.  Dr. Celiberti goes on, however, to point out correctly, as did the CBC article written by Paul McDonnell a leading New Brunswick autism expert, Professor Emeritus (Psychology) and clinical psychologist working with autistic children, that New Brunswick is still lacking in adult autism services. 

In fact New Brunswick has no autism specific youth and adult residential care system.  Instead NB autistic youth and adults who require residential care services are placed in general group homes with no autism specific staff and no professional autism specific expertise readily available.  For those who require autism specific treatment the situation becomes horrendous with some youth being placed on the grounds of correctional facilities, some youth and adults living in hotels, hospitals wards and psychiatric institutions. Some are exported out of the province and out of the country.  

In his CBC comments Dr. McDonnell provides clear direction on what is needed to fill the adult service gap in New Brunswick's autism service delivery model:

"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 can do much, much better.


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."

An enhanced autism specific group home system throughout the province with a major center, providing ongoing training, leadership and supervision, as recommended by Dr. McDonnell is exactly what is needed to fill the gaping gap in New Brunswick's autism service delivery.  Autism advocates, including me, have advocated for enhanced autism specific group homes and a center for several years but government has not responded.

In New Brunswick, parents, politicians and civil servants stepped up to the plate and became a leader in helping autistic children.  Surely we can do the same for our autistic youth and adults.  Surely we can provide decent, secure, modern living environments for our vulnerable autistic youth and adults in need.

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Looking for Helpful Autism Information Online? Start With ASAT, the Association for Science in Autism Treatment

We all know that, at least when it comes to autism, the on line world is a mess. There is no such thing as a community of interests when discussing autism. There are many parents trying to make sense of what is happening with their child and his or her autism disorder. There are professionals trying to help , some with totally pure and noble intentions, others who don't give a flying fig about your autistic child who are  guided by self interest or personal ideology.  There are some obvious sites to be careful about when trying to find on line autism help ... the Scienceblog bloggers whose focus is in proving that vaccines can never, ever, ever cause autism or any form of neurological damage will be of no assistance to you at all and  the "scientists" and  "skeptics" who blog there have only a tangential interest in autism and know very little about autism disorders. 

The Neurodiversity bloggers who think that autism is not really a medical or mental disorder, who will try to convince you that autism is just a natural variation, a wonderful parade of joy and bliss, that autism can only be considered a disorder in the sense that autism is not accepted by society should absolutely not be taken seriously. They could well lull you into a false belief that all will be well if you just think good thoughts about autism which they have elevated into an object of worship.

With all the nonsense that clutters the autism world on line where can a parent seeking to help their autistic child look to ground themselves as they being the life long struggle, and it will be a life long struggle in most cases, to help their autistic child? My recommendation for a starting point in the search for information is not in the autism blogs, including this one, notwithstanding that it is arguably the best informed, best intentioned and best written autism blog in the world (just kidding people).  The site that I recommend as your starting point in your on line autism journey and a valuable resource at all times is the Association for Science in Autism Treatment. The ASAT logo states that if offers real science and real hope and if you are looking for real science and real hope I suggest you start at ASAT.

The ASAT site is dedicated to an evidence based approach to autism treatments. The ASAT organization  is thorough, balanced and well informed. It is guided  by people like David Celeberti and Bridget Taylor, people who are both well educated and very experienced in actually helping autistic children.  In reading the abundant materials on the ASAT site you might think it is essentially an ABA site but if you do then you are simply ... wrong.  ASAT, as the name indicates is committed to real science, evidence based science. For many years ABA has been the only autism intervention that has enjoyed any substantial body of  quality evidence in support of its effectiveness. If you read the ASAT comments and recommendations though you will find acknowledgments that other approaches hold some promise but require more research in to determine their effectiveness.  ASAT does state point blank, but without exaggeration, that some methods are implausible and possibly dangerous and identifies those methods.

Throughout the ASAT site you will find language that is respectful both towards parents and towards most efforts to help autistic children.  There is a lot of helpful information on the ASAT site, it is well researched and well organized.  If you are starting on the path of helping your newly diagnosed autistic child you should really consider starting with the Association for Science in Autism Treatment.

NOTE: This is not a paid infomercial and I do not  have advertising on this blog site. My only connection to ASAT , other than being a parent of a severely autistic son,  and having read ASAT materials for many years, is that, along with some other autism parent advocates,  I had the privilege of meeting  David Celiberti briefly during a visit he made to Fredericton.

Nor do I agree with everything on the site. The ASAT site prevalence information for Autism Spectrum Disorders,  perhaps reflecting the influence of  advisory board member Dr. Eric Fombonne,  still indicates a 1 in 160  rate well after the CDC stated that the current rate for ASD's  is 1 in 110. That said,  the place to start  looking on line for trustworthy, documented information about autism treatments is ASAT.  IMHO.

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