Will New Brunswick Ever Act To Provide Adult Autism Residential Care?

The Campbellton Based Restigouche Psychiatric Hospital

 is the Only NB Based Residential Care Option for Severely 

Autistic Adults in New Brunswick

June 22, 2013

David Alward, Premier's Council on Status of Disabled Persons 
Hugh J Flemming, Minister of Health 
Madeline Dube, Minister of Social Development 
Dorothy Shephard, Minister of Healthy and Inclusive Communities 

Dear Premier Alward and Honourable Ministers:

Re: Residential Care and Treatment for NB`s Autistic Youth and Adults

I am the father of a 17 year old son with severe autism, developmental delays and epileptic seizures.  If his mother and I were to perish in an accident tomorrow my last thoughts would probably be filled with the knowledge that New Brunswick lacks anything resembling adequate residential care and treatment facilities for youths with severe autism and related disorders.  In that regard nothing has changed since the attached 2005 Toronto Star article, in which I am quoted,  concerning the youth who was housed on the grounds of the Miramichi youth correctional facility solely because he was severely autistic.  Shortly thereafter, in part at least because of Toronto media attention, he was moved to the Spurwink facility in Maine. 

As our son ages into adulthood we, his parents, will likely grow feebler and ultimately will die. No adult care facilities for severely autistic adults who require permanent residential care and treatment exist in New Brunswick.  I have worked on this issue over the past decade and met on several occasions during the Lord and Graham government eras with Ministers and even with former Premier Graham.  Even before the Miramichi youth situation arose I advocated with other parents to move an autistic adult out of the Saint John Centracare facility.  I have visited Centracare on more than one occasion and I have also been given a tour by the operators of the Campbellton psychiatric hospital where some autistic adults live out there lives.

With that lengthy advocacy involvement on adult autism care, and lack of government response,  I did not honestly expect this administration, which repeats community and inclusion cliches in many government and official statements, and even pays for a new "community" government department, to actually take action on the issue of adult autism care and treatment.  I say this in the interests of candor not confrontation.  

Despite my skepticism about your philosophically driven approach to government I still have to hope, in the best interests of my severely autistic son and others, that you will, as the Lord and Graham governments did on early autism intervention, autism trained education assistants and reversal of the decision to close the Stan Cassidy tertiary care autism team, look realistically at the issues of adult autism care.  I ask you to take an evidence based approach to adult autism care issues. I ask you to take action.  I ask you to do something about the problem.

In that regard I refer you, once again, to an interview with  New Brunswick autism expert Dr. Paul McDonnell, UNB professor emeritus (psychology) and clinical psychologist, in 2010 in which Dr. McDonnell commented on the need for an enhanced adult residential care network:

Autism services needed for N.B. adults

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes. "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."

The professor, who has spent 20 years studying children who have autistic spectrum disorders, said New Brunswick could look to the programs being implemented in the United States where local governments have funded facilities that provide independent living options for people with disabilities. 

These facilities can be expensive, but McDonnell said the costs can be even higher in terms of the "human costs" if these reforms are not implemented. "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," he said. 

Enhanced network 

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership. The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"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," he writes. "The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

The 2005 Toronto Star Article follows. It demonstrates clearly how long these autism youth and adult problems have been festering in New Brunswick. Please take steps now to address these issues that torment so many with autism and their families in New Brunswick.

Respectfully,


Harold L Doherty
Fredericton, New Brunswick

cc. Brian Gallant, Leader of the Official Opposition Liberal Party of NB
     Dominic Cardy, Leader, New Democratic Party of New Brunswick
     David Coon, Leader, Green Party of New Brunswick
     Facing Autism in New Brunswick
     Media

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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.``

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Dear Honourable Ministers: Conor Has Voted Again for Flexible, Meaningful Inclusion, Alternative Learning Arrangements

Conor, anxious to get to Leo Hayes High School, to the resource center with other challenged kids for socialization, and to his individual learning area for his ABA based instruction, watches the clock this morning. Conor votes YES for flexible inclusion with meaningful access to learning.

Minutes before departure Conor, on his own initiative, brings Dad his sneakers to make sure I don't forget to drive him to school on time. 

Honourable Jody Carr Minister of Education and Early Childhood Development
Honourable Dorothy Shephard Minister of Healthy and Inclusive Communities

Dear Honourable Ministers:

I am forwarding the above composite picture of my son Conor, seated in the kitchen watching the clock at 7:30 am this morning.  Conor, now 16 years old, has severe Autistic Disorder and is assessed with profound developmental delays.  He was not placed on a "time out" chair for having behaved badly.  He was sitting there of his own choice because he was, as he is every day, anxious to get to school at Leo Hayes High School, an experience he truly loves and one which he misses during the summer months.  

I encouraged Conor to engage in other activities instead of just sitting on the chair and he did so. At precisely 7:55 though Conor, again on his own initiative, brought me a pair of my sneakers and handed them to me,  as a polite reminder to Dad to get ready to take him to school. To the far left of the picture is a red object. It is his school back pack including his lunch pack which he packs the night before and placed in the fridge.  In the morning, on his own initiative, he places the lunch pack inside the back pack and places them near the exit door to ensure that it is with him when Dad drives him to school in the morning.  

With these actions Conor indicates clearly what a positive experience his flexible inclusive education at Leo Hayes HS is for him.  Conor does not, at our request receive his instruction in a regular classroom. Some autistic children can prosper in a regular classroom and some, like Conor, require instruction outside the regular classroom in a quieter space where he is not overwhelmed by noise and other distractions. 

Conor started his schooling in a regular classroom and came home every day with self inflicted bite marks  on his hands and wrists. (self injurious behavior is a recognized condition commonly associated with autism disorders). Once removed the biting ceased and Conor received his instruction in an individualized area in grade school, middle school and high school.  His instruction has been provided by education assistants/teacher aides trained at the excellent UNB-CEL Autism Intervention Training program.  

Conor's socialization has NOT been impaired by these arrangements.  Throughout school he has, in consultation with us, his parents, been involved in various outings and activities within his abilities including some specified gym activities, swimming (his favorite), outings like apple picking (another favorite) and last year he even attended a play put on at Fredericton's playhouse. Other students have ALWAYS greeted Conor warmly at every level of school. Some have even sought him out at our home in order to say hello to him outside of school. At Tim Horton restaurants Conor has been greeted by staff who are were students at school and knew him through Best Buddies. I underline these facts because it is important to realize that full regular mainstream inclusion is NOT necessary to ensure a full social learning experience for children with severe challenges like my son.  

One of the greatest socialization assets for Conor has been the Resource Center at the Leo Hayes High School. The RC is well staffed with trained experienced personnel that know how to manage children with extra needs in as stress free a manner as possible.  It also provides a variety of tools and sharing of information directly by people who are actually working directly with challenged children.  Stigmatization does not occur by placing challenged children in a resource center for parts of the day.  Stigmatization and outright harm occurs by pretending that all children regardless of cognitive level and regardless of disability based sensory and behavioral challenges,  must receive instruction in the same area as their chronological "peers". 

I have made these statements again on Conor's behalf, as I have made them throughout his education because of the constant threat posed to the flexible mode of inclusion that has benefited him in his education. The ideologically based every child in the regular classroom model to which this current administration and its most trusted advisers subscribe would be detrimental and harmful to my son if inflicted upon him, if his ABA based learning in an alternative area or if his socialization, security and happiness in the Leo Hayes High School are targeted for elimination.

Conor demonstrates the success of the current flexible model of inclusion, of the ABA instruction he has received outside the regular classroom, of the security and opportunity for socialization that the Leo Hayes High School Resource Center provides.  Please do not ignore Conor's story while making decisions affecting his future and the future of other children who need accommodation outside the regular classroom.

Although I am a lawyer by profession I try to avoid making legal arguments in education discussion since they can unfortunately lead to confrontation when cooperation and understanding are so badly needed to ensure proper education and development of children.  Having said that I will provide you, with respect, to two links to documents summarizing leading precedents in Canadian jurisdiction concerning the need meaningful access to education of children with disabilities written by Yude Henteleff QC a distinguished lawyer and Order of Canada member who has represented many disability organizations in Canada. Without getting too detailed I believe these documents can be summarized by saying that case law has established that an ideological insistence on regular classroom placement of all children regardless of disability considerations, and without providing alternative arrangements to accommodate their disability based challenges can constitute unlawful discrimination:

1. The Fully Inclusive Classroom Is Only One of the Right Ways to Meet the Best Interests of the Special Needs Child.  (2004) Yude M. Henteleff 

2. MEANINGFUL ACCESS, INCLUDING THE PROVISION OF A WIDE RANGE OF PLACEMENTS, AS AN INTEGRAL PART OF INCLUSIVITY IN EDUCATION by Yude M. Henteleff C.M., Q.C., LL.D. (Hon.) (2012)

I would ask you foremost though to simply look at these pictures of Conor and take my word as his parent, as a long time autism advocate and representative of the Autism Society New Brunswick during the MacKay and Ministerial Committee inclusive education reviews (and current acting ASNB President). Not all children, and certainly not ALL autistic children function well in the regular classroom.   The ASNB position that children should be educated in a manner consistent with an evidence based determination of their best interests is consisted with the policies of the Canadian Learning Disabilities Association. It is also consistent with the first section of the PNB definition of Inclusive Education that resulted from the Ministerial Committee review of inclusive education:

"Inclusive Education

I. Vision

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and  founded on evidence." (underlining added - HLD)

I ask both of you Honourable Ministers to be faithful to the above definition of inclusive education fashioned after years of consultation conducted by Ministers of the Lord and Graham governments and examined the evidence of my son and other children with needs that require education outside the regular classroom.  Please continue the option for individualized education outside the regular classroom for those like my son who require that arrangement.  And please do not eliminate valuable, proven resources like the Leo Hayes High School Resource Center that have contributed so much in the way of socialization, security and friendship for my son and others with similar needs.

Respectfully,

Harold L Doherty

Fredericton NB

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