NB Ombudsman's Centre of Excellence is a Fantasy That Will Not Fill Residential Care and Treatment Needs of Severely Autistic Adults

The Bricks and Mortar Office of the Ombudsman 548 York Street,

Fredericton,New Brunswick, at the Staying Connected consultations,

in which I participated, Ombudsman Bernard Richard and NBACL

President Clarence Box both dismissed Long Term Residential

Care and Treatment Facilities for Autistic Youth and Adults as "Bricks and

Mortar Solutions" The Centre of Excellence which the Ombudsman's

office has promoted so heavily is not an actual center, it is a

bureaucratic fantasy which will not provide a place to live and receive 

treatment for severely autistic youth and adults.

As a former Autism Society New Brunswick representative I  met with government officials on several occasions to stress the need for evidence based, secure, autism specific residential care and treatment facilities for New Brunswick adults with severe autism disorders.  Invariably government officials in both Liberal and Conservative administrations have declared that they were studying the issue but they have never taken concrete action to establish a modern, decent, facility with autism trained staff or with access to ongoing autism treatment.  I have on this site  posted several times over the past 6 years about the lack of adult residential care and treatment facilities for autistic adults.  

Still nothing happens. Part of the problem lies with government and part of the problem lies with the community living ideology which governs education, health and social development departments and institutions like the NB Human Rights Commission and the NB Ombudsman's Office under its various names.  All of these institutions talk about providing care in the community and talk about temporary care for the more severely autistic in more institutional settings. But they have no grasp of the realities facing severely autistic adults, none whatsoever, and NB youth and adults with autism pay the price for their autism ignorance.

Since my last post and email on this subject CBC New Brunswick reported the situation of an 18 year old New Brunswick autistic man who checked himself out of Centracare in Saint John in winter weather wearing only a hospital johnny shirt:

"The family of an 18-year-old with autism, who's currently being housed at the Salvation Army hostel in Saint John, is calling on the province to do more to help people in his situation.

The young man, whom CBC News has chosen not to name, has mood swings and behavioural issues, including violent outbursts.

He has been unable to remain in a group home and last Sunday, he checked himself out of the long-term mental health facility Centracare, wearing only a Johnny shirt in the subzero temperatures."

This 18 year old autistic man unfortunately falls squarely in the middle of the gap that exists in New Brunswick between group homes and psychiatric hospital care. CBC News deserves some credit for reporting this story but in their report they asked for feedback from former Ombudsman Bernard Richard. Mr. Richard is a very courteous and gentlemanly career politician and bureaucrat but he is also a person who lacks any obvious understanding of the realities faced by youth and adults with severe autism disorders.  In his comments on this Saint John "johnny shirt" incident Mr. Richard talked about the alleged "centre" recommended by the Complex Needs process which he oversaw:

""I've been generally encouraged," he told CBC on Wednesday."They are feeling that they need to do something and I am hopeful that they will."

In 2008, in his report called Connecting the Dots, Richard recommended a centre of excellence be dedicated to research and the provision of services to children with very complex needs, including the establishment of community-based residential capacity for them.

The centre was one of 48 recommendations in the report, which was a two-year undertaking and included a review of seven individual complaint files relating to youth with very complex needs.

Richard called for a centre of excellence again last year in report called Staying Connected, which he co-authored as co-chair of a task force on a centre of excellence for children and youth for complex needs.

"When a placement outside of the home is required for assessment or step-up intervention purposes, the centre of excellence will help ensure that clinicians, educators, social workers and all interveners work together and from the same page in meeting the child’s needs," the report said.

"The millions expended to date for step-up interventions abroad could benefit many more children if they were spent here in New Brunswick; those expenditures could develop expertise, services and employment in communities around our province."

The first point to note is that Mr. Richard is talking about children not older youths and adults.  The second is that he is talking about community based residential capacity for these children.  Mr. Richard's comments, to the extent that they are referring to autism disorders, do not demonstrate any understanding of the very serious, long term, and in some cases, permanent challenges facing many adults living with severe autism disorders.  For such adults assessment is not an issue. Nor is a hospital in patient out patient model the answer. Many severely autistic adults need facilities in which to live permanently with autism trained staff and access to expert autism therapeutic and medical care on an ongoing basis.  

I was involved with the Staying Connected review process and I spoke about the need for permanent residential care and treatment placement facilities with autism trained expert staff. My comments carried no weight with the Staying Connected process panel which was ideologically opposed to any attempt to establish centres. The Ombudsman's office has never been a strong advocate for autistic children and adults in New Brunswick.  Positive improvement in early intervention and school services were obtained by committed parents fighting on behalf of their children. The Staying Connected consultations actively discouraged discussion of actual facilities, or "bricks and mortar" solutions for the serious challenges facing New Brunswick adults with complex needs including the very complex needs of severely autistic NB youth and adults.

Unfortunately, when it comes to adult autism care, the Ombudsman's office is not just  an irrelevant bystander as it was for preschool and school autism services.  It has become part of the opposition to providing decent modern and adequate residential care and treatment facilities.

The Ombudsman's office is not part of the solution when it comes to adult autism residential care and treatment in New Brunswick. As a bureaucracy closely tied to  the community living leadership which has such great influence with New Brunswick governments, and which vigorously opposes residential care and treatment facilities for autistic adults, it is part of the problem, a very big part of the problem. 

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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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The New Brunswick Association for Community Living Centre of Excellence for Children and Youth with Complex Needs

I have participated in the current "consultation" process being conducted by Bernard Richard,  New Brunswick's highly, and justly,  respected Ombudsman and Youth Advocate purportedly aimed at developing recommendations for a centre of excellence for youth at risk and youth with complex needs. I was very upset to hear this good gentleman make remarks at the outset of his comments which appeared to rule out any type  of  recommendation of a   residential care facility for youths with complex needs. There was no recognition in his remarks of the reality faced by many youth and adults with severe developmental disorders and limitations who actually require residential care and treatment on a prolonged or permanent basis.   Unfortunately  Mr. Richard's remarks reflected the non evidence based  NBACL community inclusion philosophy whose adherents have steadfastly opposed evidence based treatment, education and residential care for children, youth and adults with autism disorders.

There was no recognition in Mr. Richard's remarks  of the need for permanent care facilities even though the evidence of such a need is living, and has been living for years, in hospital facilities of various types in Campbellton and  Saint John, New Brunswick. Some of this evidence, some of these people, including some with autism disorders, have even been exported out of the country to Bangor Maine.

Parents of such individuals do not WANT their youth and adult children to live in hospitals but there has been no decent, modernized, alternative residential care and treatment facility in New Brunswick. That brutal reality does not appear to be recognized in the current review by Mr. Richard who at a gathering last night, once again, repeated the cliches and feel good buzz words of the community living movement. 

The event last night was very much like a high school football rally with young people wearing DOTS T-shirts    playing music and encouraging those present to throw symbolic balls of rolled up paper into recycling boxes. Mr. Richard addressed the rally and talked about the bad old days of the Roberts facility, closed now for many years, which still dominates the thinking of those, including Mr. Richard, who subscribe to New Brunswick's failed community inclusion model. Mr. Richard, like NBACL President Clarence Box, who joined the discussion table to which I was assigned during the previous consultations, talked about moving past "bricks and mortar" concepts in his recommendations for a new Centre for Youths with Complex Needs.   

I don't know what kind of centre will be recommended that will not include bricks and mortars. The buildings in which Mr. Richard's office is located, the several buildings owned by the NBACL in NB are "bricks and mortar".  People need facilities to do many things ... to live, to work in their offices, to educate children...  to provide treatment ... and to provide a place in which to reside and receive treatment, in some cases permanently,  for some youth and adults with complex needs. The community inclusion model has prevented modernized habitable versions of such facilities from being developed in NB and it has simply ignored those who don't fit their belief based system and have had to be hospitalized or exported. 

It is the very feel good community living philosophy embraced by Mr. Richard which has caused the problem here in NB.  Mr. Richard spoke at the consultation meeting and again last night about how impressed he was with the "vision" of one of his expert advisers a gentleman from Ontario with no prior connection I am aware of to New Brunswick. What evidence the gentleman's vision is based on is beyond me to say. I suppose though  that visions, and philosophies,  do not require an evidence basis.

It is a problem Mr. Richard now appears poised to try and fix by applying more of the same failed philosophy that caused the problem in the first place.  I am sure Mr. Richard will recommend a visionary concept to serve NB's youth with complex needs. I am sure Mr. Richard, Mr. Clarence Box,  community living icon  Gordon Porter, and other subscribers to the community inclusion philosophy, will feel good about that vision.  I am happy for them. 

I am not at all sure though, with great respect, that Mr. Richard will recommend anything which really addresses some of the most important needs of youth with complex needs ... the need for decent, modernized and evidence based  residential care and treatment. 

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An Autism Honor I Truly Value

Last night I was honored with an award, for autism parent advocacy, as part of the Autism Connections Fredericton fundraiser and autism awareness event Oscars for Autism. I have in the past expressly avoided such recognition for fear it would be a distraction that would prevent me from doing what had to be done in advocating for autism services in New Brunswick. Last night's award though originated with people whom I have stood beside for many years in fighting for better lives for New Brunswick's autistic children and adults; people for whom I hold the highest regard and respect.... and it gave me a chance to take the stage and reinforce the reality that right now our priority should be in improving New Brunswick's youth and adult residential care system.

I enjoyed the opportunity to publicly thank Premier Shawn Graham for all that he has done for autistic children and students in New Brunswick. I was particularly pleased to thank former Premier Bernard Lord for everything his government did in laying the foundation for the progress that has been made in provision of autism services for New Brunswick children. In those first years when little in the way of services were available, and knowing the importance of time in obtaining intervention for autistic children as early as possible, things were at times a bit ... intense. Premier Lord left NB politics before being properly thanked for listening and responding in a considered, informed fashion ... despite the intensity. It was, and is, my pleasure to thank both of these leaders and the people in cabinet and the civil service who have made it happen.

"Oscars" were given out to persons with New Brunswick roots who have made outstanding community contributions including NB Premier Shawn Graham, former NB Premier Bernard Lord, Steve Murphy of CTV News, Bernard Richard, NB Child Advocate and Ombudsman, Reid Manorebusinessman (Tim Horton's), Fredericton Mayor Brad Woodside, Dr Eddy Campbell (President UNB) Cathy Hutch, musician and mother of a young autistic woman, the Lapointes (music group), Marc Roberts ( East Coast Music Show) and Sheree Fitch (Author).

Dr. Tara Kennedy was the keynote speaker and gave an excellent presentation providing a basic overview of autism disorders and interventions and commenting on New Brunswick's leadership role as a small province which has done very well in providing early intervention services for autistic children and autism trained teacher assistants for New Brunswick's autistic students.

Photo 1 - My buddy Conor, holding my award today, the reason I have been actively involved with autism advocacy in New Brunswick during the past decade.

Photo's 2,3,4 courtesy of Dawn Bowie:

Photo 2 - Me, posing with award recipient, and Atlantic Canada's prominent news anchor Steve Murphy of CTV/ATV news. It was a pleasure having the opportunity to meet and talk with Steve.


Photo 3 - I had the privilege of standing with some of the people who have contributed much in autism advocacy in New Brunswick: L to R - Paul McDonnell, Gil Blanchette, Nancy Blanchette, Albert Bowie, Dawn Bowie and me.

Photo 4 - Neil Lacroix of autism connections fredericton, Kim McKeigan Speech Language Pathologist, Stan Cassidy Centre, Dr. Tara Kennedy, developmental pediatrician, Stan Cassidy Centre, Kim Gahan, autism connections fredericton,Elizabeth McDonnell, B.Sc.,OT (C), Occupational Therapist and Paul McDonnell Ph. D. clinical psychologist, professor emeritus (psychology) and the "Godfather" of New Brunswick's autism advocacy movement.

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