Time is Up - The Autism Unit in the Restigouche Hospital Centre MUST be Closed and Relocated to Fredericton

Time is Up - The Autism Unit in the Restigouche Hospital Centre MUST be Closed and Relocated to Fredericton

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.

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

Dear NB MLAs: In 2020 - End the Neglect and Abuse and Move the Restigouche Autism Unit to Fredericton

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

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:

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. 

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..