Monday, May 06, 2013

Adult Autism Care in New Brunswick: An Open Letter to Premier David Alward


May 6, 2013

Honourable Premier David Alward
Respected Cabinet Ministers and Party Leaders

Dear Premier Alward

I am the Acting President of the Autism Society New Brunswick  and a parent that was involved, with many  other parents, in the advocacy that led to the establishment of the UNB-CEL autism intervention training program, the provision of early autism intervention to children aged 2-5, UNB-CEL  autism specific training of Education Aides and Resource Teachers and the reversal of the decision to close the Stan Cassidy Center tertiary care autism team. We also argued with some modest success for an evidence based, student centered, definition of inclusive education. We have been less successful in advocating for  a continuum of placement options to accommodate the varied, complex needs of autistic students although individualized instruction does continue in some schools. 
Autism successes in New Brunswick have resulted from many factors including access to sound, knowledgeable, professional advice that oriented us toward evidence based, scientific goals to assist our children's very challenging needs and responsive  leadership in the Lord and Graham governments.  Despite these gains, which are in need of further refinement and advancement,  we must, with sorrow, shame, and fear, acknowledge that  we have to date failed to see any substantial improvements in services  for New Brunswick adults with autism disorders. That failure, like the aforementioned successes, must be shared by parent advocates and government decision makers.
Several news agencies have highlighted events in Ontario where parents left their 19 year old severely autistic son with a government office because they were unable to continue providing him with the necessary level of care.  Many New Brunswick parents including me, and my wife, have also long feared that day. That fear grows stronger with each year of non action, each year of failure to address seriously the needs of autistic adults across the autism spectrum. 
Many parents in New Brunswick seek meaningful assistance to help care for their adult autistic children in their homes.  Obviously at some point parents grow too old or exhausted and ultimately become enfeebled and pass on. We do so  with the knowledge that no credible, comprehensive autism care system is in place to care for our adult autistic children who require assistance when we can no longer help them.  Moderately to severely autistic and intellectually challenged autistic adult children will face serious difficulty living in group homes with untrained staff and non existent educational and social options.  Our most severely affected autistic adults will live in the Restigouche Regional Hospital psychiatric unit or in facilities out of  province like the Spurwink facility in Maine. 
Money is always an issue in government decision making and that is understood by all.  However, the failed group home system that exists in NB   also carries costs such as placements in Spurwink Maine at several hundred thousand dollars a year per individual.  Money is part of the problem but so too is the overwhelming dominance of the "community"philosophy in the mindsets of NB's public decision makers.  There is no question that those who have promoted the community/inclusion model in NB have made very substantial contributions to the lives of most persons with disabilities in our province but  the dominance of their beliefs, and the rigidity with which they are maintained, precludes the development of evidence based alternatives and prohibits the development of a facility that can provide permanent residential care and treatment for those with severe autism and co-morbid disorder challenges.  
Autistic residents of group homes have been charged with assault when in conflict with untrained staff.  An autistic youth was housed temporarily on the grounds of the Miramichi correctional facility and at least two New Brunswick residents with autism have been sent to Spurwink in neighboring Maine.  We do not have a modern, professional,  permanent residential care and treatment facility for adult New Brunswickers with severe autism in large part because of the rigid adherence to a decades old philosophy that simply ignores contrary evidence including those persons who are sent to psychiatric and general hospital wards, out of province facilities and correctional facilities to spend their lives.  Public events to discuss disability policies and service requirements are typically organized in pre-arranged "table discussion" formats that prevent serious open discussion of contentious issues.
Over the last decade the Autism Society New Brunswick advocated for a continuum of residential care and treatment options to provide for our autistic adult children.  Three years ago, during the 2010 provincial election,  UNB Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell articulated in a CBC interview the concept of a continuum or network of residential care and treatment center.  Professor McDonnell spoke of the need for a modern adult autism residential care and treatment system in New Brunswick with a center that would provide residential care and treatment for those severely affected by autism, a center that could also assist in the training and service provision in group homes and facilities in communities around the province.  The center would be a modern facility that could provide educational and social elements in the lives of severely autistic adults. No progress has been made in moving towards such a home grown solution notwithstanding the international recognition that NB received for its successful UNB-CEL early intervention autism training program.
On behalf of the Autism Society New Brunswick, and parents of autistic children and adults, I ask you Mr. Premier to commit to the modern, professional system of adult autism residential care  articulated by Professor McDonnell.  An adult autism residential care and treatment facility based in Fredericton, with professional administration, trained staff, evidence based treatment,  education and social programs for the residents is needed.  An autism center would  provide desperately needed  permanent residency for the most severely affected by autism disorders, training and advice for staff in community based group homes, and assistance for parents whose adult children are still living with them.  The Fredericton location would be centrally located and in close proximity to other New Brunswick autism successes and expertise at UNB and the Stan Cassidy Center.  
Much time has passed with no serious response to our calls to address the needs of autistic adults. There has been no progress to date. Hopefully that will now change and work can begin as soon as possible on the development of an autism residential care and treatment facility.


Harold L Doherty

cc. ASNB

1 comment:

Anonymous said...

having no help, outside of family, for adults with autism if terrifying.