Dear Honourable NB MLAs and Other NBers with Adult Autism Residential Care and Treatment Concerns
Introduction
Autism parents have fought for years to have NB governments develop a decent, humane and evidence based autism group home for autistic adults with varying challenge levels. Those efforts have been ignored for over 15 years but the Ombud Report "Failure to Protect" released in 2019 has provided clear and compelling evidence that persons in the Restigouche Hospital have not been provided with appropriate professional care and have been subject to abuse and negligent care. That report included the Autism Unit at the Restigouche. The location has also long been decried by autism parents particularly the parents of adults with autism and intellectual disability as being physically beyond reasonable range of the vast majority of families in NB and far from professional expertise. Those allegations have now been proven true by the Ombud Report. Further the report by CBC Reporter Karissa Donkin has revealed that the Restigouche Psychiatric Hospital has been the subject of numerous disciplinary issues of employees in the hospital units.
It is time to stop making excuses, end this human rights disaster, close the Restigouche Hospital Autism Unit and begin formally developing the Autism Village Network with an Autism oversight facility that could also provide permanent residential care and treatment for those with the most severe autism disorder challenges including those with autism AND intellectual disability.
Further Delay Is Unacceptable
It is time to stop making excuses, end this human rights disaster, close the Restigouche Hospital Autism Unit and begin formally developing the Autism Village Network with an Autism oversight facility that could also provide permanent residential care and treatment for those with the most severe autism disorder challenges including those with autism AND intellectual disability.
Further Delay Is Unacceptable
The governments of both the recent Liberal and PC governments have waited for the Autism Connections Tour report before proceeding further. The report adds nothing to our knowledge of autism needs and challenges in New Brunswick, and it excludes any meaningful discussion of the persons with autism and intellectual disabilities who comprise 50% (World Health Organization). The "Hutch"/McDonnell Report does not contain any meaningful discussion of the numbers and challenges facing persons with Autism Spectrum Disorders and Intellectual Disabilities. Intellectual Disabilities are mentioned very briefly in passing. What is not said is that persons with autism disorders and intellectual disabilities comprise 50% persons on the autism spectrum according to the World Health Organization:
The ACF Tour Report does not even mention the fact that such a large proportion also suffer from Intellectual Disability or that they suffer from a 9 year premature mortality rate at the "high functioning" end of the spectrum and 30, YES THIRTY YEAR PRE-MATURITY MORTALITY RATE, on the low functioning end of the spectrum with severe autism condition AND intellectual disabilities. See Personal Tragedies, Public Crisis, Autistica UK and authorities referenced therein.
The voices of adults with severe autism and intellectual disability, were unrepresented as a distinct and meaningful group in the ACF Tour process. Parents who tend to speak for those with ASD AND ID were one of the groups but the parent group included parents of persons with intellectual disability and parents of autism without disability. No breakdown was provided between these 2 groups or the numbers in each group comprised in the discussions. Persons with autism without intellectual disability were represented by parents AND some formed a group where they made their own submissions. Those with ASD AND ID spoke only through parents. As stated the 50% with ASD AND ID were simply mentioned with no meaningful discussion of their very serious life threatening challenges. By contrast persons with ASD without ID were specifically featured in a separate section in the Index.
The ACF Report does not discuss the disgraceful conditions at the Restigouche as found by the Ombud, "Failure to Protect", and the disciplinary issues in the Restigouche reported by CBC Reporter Karissa Donkin in Violence and threats, negligence, insubordination led to discipline at troubled hospital, At its best the "Hutch"/McDonnell paper reports information long known to government and autism parent advocates such as the challenges faced by parents, including parents such as myself and my son's mother, with respect to respite care. The ACF Tour Report should not be relied on to stall any longer on closing the Restigouche Psychiatric Hospital Autism Unit and moving it to Fredericton close to existing expertise at the Stan Cassidy Centre autism team and the UNB-CEL autism training program.
It will be easier to obtain professional autism expertise for a centre in Fredericton to provide proper professional care to those with autism disorders and severe issues including intellectual disability including permanent care and treatment for the most severely challenged. It is time to establish the Autism Village Nework with a centre in Fredericton.
Q: Do people with an autism spectrum disorder always suffer from intellectual disability?
A: The level of intellectual functioning is extremely variable in persons with an autism spectrum disorder, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability.The ACF Tour Report does not even mention the fact that such a large proportion also suffer from Intellectual Disability or that they suffer from a 9 year premature mortality rate at the "high functioning" end of the spectrum and 30, YES THIRTY YEAR PRE-MATURITY MORTALITY RATE, on the low functioning end of the spectrum with severe autism condition AND intellectual disabilities. See Personal Tragedies, Public Crisis, Autistica UK and authorities referenced therein.
The voices of adults with severe autism and intellectual disability, were unrepresented as a distinct and meaningful group in the ACF Tour process. Parents who tend to speak for those with ASD AND ID were one of the groups but the parent group included parents of persons with intellectual disability and parents of autism without disability. No breakdown was provided between these 2 groups or the numbers in each group comprised in the discussions. Persons with autism without intellectual disability were represented by parents AND some formed a group where they made their own submissions. Those with ASD AND ID spoke only through parents. As stated the 50% with ASD AND ID were simply mentioned with no meaningful discussion of their very serious life threatening challenges. By contrast persons with ASD without ID were specifically featured in a separate section in the Index.
The ACF Report does not discuss the disgraceful conditions at the Restigouche as found by the Ombud, "Failure to Protect", and the disciplinary issues in the Restigouche reported by CBC Reporter Karissa Donkin in Violence and threats, negligence, insubordination led to discipline at troubled hospital, At its best the "Hutch"/McDonnell paper reports information long known to government and autism parent advocates such as the challenges faced by parents, including parents such as myself and my son's mother, with respect to respite care. The ACF Tour Report should not be relied on to stall any longer on closing the Restigouche Psychiatric Hospital Autism Unit and moving it to Fredericton close to existing expertise at the Stan Cassidy Centre autism team and the UNB-CEL autism training program.
It will be easier to obtain professional autism expertise for a centre in Fredericton to provide proper professional care to those with autism disorders and severe issues including intellectual disability including permanent care and treatment for the most severely challenged. It is time to establish the Autism Village Nework with a centre in Fredericton.
History of the Fight to Close the Restigouche Autism Unit and Provide Proper Adult Autism Residential Care and Treatment
Residential care and treatment for autistic youth and adults with severe autism disorder and intellectual disability has been a major issue in New Brunswick for several years before 2005 when an autistic youth was learned to have been housed on the grounds of the Miramichi Youth Correctional Center not because he had committed a criminal offence but simply because there was no decent alternative location in NB, including the Restigouche Hospital, for housing an autistic person with severe challenges.. He was moved to the Spurwink facility in Maine. See Toronto Star, October 19, 2005, Autistic boy kept in New Brunswick jail No other place for him to stay 13-year-old mus go to U.S. hospital.
Numerous representations have been made to NB governments over the intervening years to close the Autism Unit at the Restigouche Hospital and begin development of the Autism Spectrum Village proposal as mentioned by the ASNB in 2008 after discussions with Paul McDonnell Ph.D. emeritus (psychology) submitted by Paul McDonnell Ph. D. which he articulated in CBC discussions with Dan McHardie in 2010.
The McDonnell 2015 Autism Spectrum Village paper was presented to then Social Development Minister Cathy Rogers during a meeting I had organized as a result of meeting with Brian Kenny in the NB Legislature. I had been present with some other autism parents to hear Ernie Steeves adult autism motion and I was not happy with what I had heard in the Liberal response to Mr. Steeve's motion. Brian Kenny whom I had met outside the Legislature while protesting pointed at me, I assumed because I was visibly upset with the Liberal government response. Mr. Kenny then came to ask me to step out in the hall to meet Minister Rogers and we discussed arranging a meeting. Fellow Autism Parent advocate Cynthia Bartlett and Paul McDonnell Ph. D., ultimately agreed to meet with Minister Rogers and 4 members of her department.
The McDonnell 2015 Autism Spectrum Village paper was presented to then Social Development Minister Cathy Rogers during a meeting I had organized as a result of meeting with Brian Kenny in the NB Legislature. I had been present with some other autism parents to hear Ernie Steeves adult autism motion and I was not happy with what I had heard in the Liberal response to Mr. Steeve's motion. Brian Kenny whom I had met outside the Legislature while protesting pointed at me, I assumed because I was visibly upset with the Liberal government response. Mr. Kenny then came to ask me to step out in the hall to meet Minister Rogers and we discussed arranging a meeting. Fellow Autism Parent advocate Cynthia Bartlett and Paul McDonnell Ph. D., ultimately agreed to meet with Minister Rogers and 4 members of her department.
L: Brian Kenny, NB's New Education Minister
R: Harold L Doherty, Parent, Autism Advocate
Adult Autism Center Advocacy Protest, NB Legislature, May 2015
The meeting with Minister Rogers appeared to go well no promises but meaningful discussion of what would be required, a commitment to evidence based principles to be followed if there was movement, and the need to involve other departments. I was optimistic that the Liberal government was open to considering the McDonnell Autism Village proposal. Shortly thereafter however, Minister Rogers was moved to the Finance portfolio and nothing further developed with the Liberal government.
I have spoken with my riding MLA on two occasions on the subject. In addition Cynthia Bartlett and I and another parent advocate met with Social Development Minister Dorothy Shephard early in 2019. I learned later from 2 MLA's that the current government was waiting for the Autism Connections Fredericton Tour report before making any decisions on adult residential care.
In a facebook discussion during the election campaign Minister Horsman indicated the government wanted to hear from "Hutch", apparently his buddy name for Rick Hutchins even though "Hutch" has no autism experience academically to my knowledge or as a parent of an autistic child. It is my understanding that the Tour was financed by the previous Liberal government but I have no proof and if true can not say how much was expended on the "Tour".
The Autism Connections Fredericton Adult Autism Tour Report is now in the public domain. It does not address in any meaningful way the long established need for an adult autism residential care and treatment village network and centre. The Autism Village is referenced in the ACF report although the link to the report does not, as of today at least, work. For anyone interested they can read the McDonnell 2015 Autism tour report on this blog site: The New Brunswick Autism Spectrum Village It Takes a Village to Support Adults with Autism Spectrum Disorder NEW BRUNSWICK SATELLITE MODEL FOR ASD SERVICES FOR ADULTS
CONCLUSION:
NB has run out of excuses. It is now time to comply with the principles and law articulated in the UN Convention on the Rights of Persons with Disabilities by ensuring special care autism homes around NB for those with varying levels of care requirements and an Autism Centre in centrally located Fredericton close to continually developing autism expertise in Fredericton to provide oversight,training and long term and permanent residential care and treatment for those most severely affected by autism and related disorders including intellectual disabilities..
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