Adults with severe autism disorders and intellectual disability have been sent for most of 2 decades to the Northern New Brunswick border to the Restigouche Hospital Centre in Campbellton. There is no autism expertise located there, professional staff is hard to recruit and regular staff display serious disciplinary issues. The location is as far as possible from the bulk of NB population and families all of which is contrary to the UN Convention on the Rights of Persons with Disabilities articles 25 and 26.. It is long past time to develop an autism center in centrally located Fredericton the location of NB's internationally recognized autism expertise. If that is not done soon this father of an autism adult son will be exploring options under the UN CRPD including the Optional Protocol to which Canada is now a signatory.
The CBC headline January 17 2020 states: "Long road ahead for Restigouche Hospital in ending culture of silence, ombud says". That headline should be the final piece of information a NB government needs to decide to close the Restigouche Hospital and re-purpose it to other needs in Northern New Brunswick eg. Northern NB elder care and treatment.
Earlier this week Vitalite Network was found to have breached labour laws by offering nurses a 5% wage increase to locate at the Restigouche Hospital in contravention of statutory collective bargaining provisions. Last year the Ombud Failure to Protect Report documented the neglect and abuse at the Restigouche Hospital Centre. The Autism Unit at the RHC has been a destination of exile for many adults with severe autism and intellectual disabilities far from families and far from autism expertise in centrally located Fredericton all of which is contrary to the UN Convention on the Rights of Persons with Disabilities which Canada (and thereby NB) has subscribed to including the Optional Protocol which provides some processes to seek enforcement of the UN CRPD in countries and provinces like Canada and New Brunswick which have permitted gross violations of the Convention to continue unabated in the interest of economic development (and political gain) in NB's shrinking northern communities.
Please remove the Autism Unit at the RHC and move it to centrally located Fredericton where autism expertise has long been developing and receiving international recognition in the form of a public commentary by the Association for Science in Autism Treatment and contracting with jurisdictions from Saskatchewan to France to assist in developing evidence based autism treatment (ABA) programs for their areas.
To those who do not know me my name is Harold Doherty. I am a practicing lawyer in Fredericton NB and the father of a soon to be 24 year old son with severe autism, intellectual disability and epilepsy. For those unfamiliar with autism spectrum disorders that is a common combination with 50% of the autism spectrum (World Health Organization) also suffer from Intellectual Disability and many of those suffering from epilepsy. Readily available information (Autistica UK's "Personal Tragedies, Public Crisis. The urgent need for a national response to early death in autism") and the studies identified therein report a 30 year, that is a THIRTY YEAR, reduced life expectancy for persons on the severe end of the autism spectrum. My son and others with his severe autism and related disorders can not afford to wait another 15-20 years for politicians to wake up and grow a conscience.
In 2008 the parent driven Autism Society of NB, after conducting its own province based survey, drafted a submission which among things recommended the development of an autism village of homes for varying levels of need in the autism community. The village would also include a center to provide training, oversight and both temporary and permanent care according to the need requirements of the adults with autism involved.
ASNB parents did not develop the Autism Village model. We learned the concept in discussions with NB autism expert and former autism advocate Professor Emeritus (Psychology) Paul McDonnell. Mr. McDonnell articulated an autism village in a 2010 interview and analysis with CBC's Dan McHardie as part of the lead-up to the provincial election:
September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)
"Our greatest need at present is to develop services for adolescents and adults.
"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. The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.
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 resident 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."
(Highlighting Added - HLD)
In 2015 McDonnell presented a paper on the Autism Village in a meeting with then Social Development Minister Cathy Rogers which I organized with the assistance of Brian Kenny and which I attended with McDonnell and fellow autism parent advocate Cynthia Bartlett. In 2019 Ms Bartlett and I met with current Minister Shephard and again discussed the need for the Autism Village.
Since then subsequent meetings have been held with cabinet. More recently over the past 15 months any further progress has been delayed by the Autism Connections Fredericton adult autism tour; a deeply flawed process with clear bias against those with severe autism and intellectual disability. The ACF report also suffered from an obvious conflict of interest which it showed when it advocated for more funding for autism community centres which do not provide treatment, residential care, or any solidly based autism education. Indeed the 50% of the autism spectrum which also suffers from a 30 year reduced life expectancy (Personal Tragedies, Public Crisis, Autistica UK and studies reported therein) was barely mentioned in the ACF Report which was literally a tour with snippets of conversation and no meaningful analysis. .
I and many other parents of adult children with severe autism including the many with severe autism and intellectual disability can not wait any longer.It will be necessary to seek intervention and resolution from international sources if current government decision makers and politicians still lack the insight and conscience to act after the Ombud Failure to Protect Report, the CBC Karissa Donkin Reporting on employee discipline issues at the Restigouche; or the recent Labour Board ruling on Vitalité Health Network violation of labour law in seeking to attract nurses to the Restigouche: Labour board says attempt to lure nurses to Restigouche Hospital Centre failed, violated law.
The UN Convention on the Rights of Persons with Disabilities, including the Optional Protocol to the Convention, may be the only option left to require Canadian and NB politicians to end the horror of the Restigouche Hospital Centre and provide decent, humane adult autism residential care and treatment for adults with serious autism and related disorder challenges.
This Dad is now examining the possibility of proceeding under the UN CRPD Optional Protocol to force our Canadian and NB politicians to do the right thing. Build the Autism Village with a Centre in Fredericton and close the Restigouche Hospital Centre Autism Unit.
Harold L Doherty LLB
Conor's Dad
Queen Elizabeth II Diamond Jubilee Medal Recipient (Autism Advocacy)
63 Alder Avenue, Fredericton NB E3A 1 T1
No comments:
Post a Comment