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:
"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.
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.
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