The Silencing of Severe Autism Across the Pond AND in Canada and New Brunswick

The Silencing of Severe Autism Across the Pond

Much of what Jane McCready in the quotation below comments on Her full commentary can be found at the attached link above)  is true here in Canada where the Liberal Party of Canada passed a Medicare for Autism resolution but the Liberal PM Justin Trudeau simply ignored. Here in NB the need for an Autism Village of autism specific care homes with an Autism Centre centrally located in Fredericton has been ignored by Liberal and Conservative governments which instead sponsored the government based Autism Connections Fredericton to "tour" the province seeking input from parents and who recommended more funding for .... hold your breath ... autism community centres which primarily serve persons without the 50% (WHO figure) of the autism spectrum with severe autism and intellectual disability The Report trivialized and misrepresented the realities of the 50% of the NB autism spectrum with severe autism and intellectual disability. Meanwhile the UNBCEL presented an Atlantic Provinces Autism Conference which did not feature any of the NB parents who speak for our children with severe autism and intellectual disability.

The UK's embrace of a celebratory stance on autism obscures autism’s harsh realities and invites de-funding, writes Jane McCready

Jane McCready: 

"Not sure anyone other than severe autism/disability parents can understand that race to sort things out before we die. Dying with a severely autistic son feels a bit like leaving a 2 year-old standing alone in the middle of a busy motorway. Helpless and vulnerable out in the world. Plans have to be made, siblings consulted, we have to make watertight wills, have to make sure he learns as many independent skills as possible. Before we become little old people too frail to help him with the skills he hasn’t learned to manage himself. Shaving, showering, cutting his toenails, making food, taking a bus to the supermarket, talking to express his needs. The list is endless. All stuff that the late-diagnosed, level 1 autists who lecture me on Twitter, and take places on autism boards, have picked up easily and take for 

granted. ...................  https://www.ncsautism.org/…/the-silencing-of-severe-autism-…"

Autistic boy kept in New Brunswick jail Oct 19 2005 Not much better in 2020

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital. No other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

"We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province

.http://www.canadiancrc.com/Newspaper_Articles/Tor_Star_Autistic_boy_kept_NB_jail_19OCT05.aspx?fbclid=IwAR1yQJXRpHN-dwq41sHD1kGNOvyu64T69v_MdixbxQpQpaFPrE1oFMv0MIk

NB Ignores Residential Care and Treatment of Adults with Severe Autism and Intellectual Disability

R: Parent autism advocate Cynthia Bartlett who has been a strong voice for autism services including residential care and treatment services for adults with severe autism disorder and related challenges. Cynthia and MLA Ernies Steeves were present at a 2015 autism protest at the legislature.

NB Needs Severe Adult Autism Services

I am sharing this well written post from a long serving and very strong voice for New Brunswick autism services throughout the lifespan Cynthia Bartlett.

Cynthia Bartlett

Clearly it seems that those who suffer with very severe autism and associated conditions such as epilepsy, self harming, little to no language skills, extreme anxiety and co- morbid conditions are simply not being prioritised provincially or federally.

Liberals voted for an act for life time provisions to be passed but that has not scrolled up as a priority.

Why, why, why is this deeply disturbing and debilitating human condition not addressed. The growing numbers of those severely afflicted and their families have no hope for long term provisions.

What happens when parents die? What happens when they are living; employment is difficult, high stress and their own health is impacted, marriages are strained or there is divorce.

The Senate in the US has passed an act back in 2019 called the “Autism Cares act”.

Where is Canada in all of this?

Will NB "Health Care Reform" Address Severe Autism Adult Care Neglect and Abuse in New Brunswick?

WILL NB "HEALTH CARE REFORM" ADDRESS SEVERE AUTISM ADULT CARE NEGLECT IN NEW BRUNSWICK?

HAROLD L DOHERTY <HLDOHERTY5463@GMAIL.COM>

to Blaine.Higgs, Hugh.Flemming, Dorothy.Shephard, Ernie, Stephen, Cathy.Rogers, David, kris.austin, justin.trudeau, Jenica.Atwin, Patty.Hajdu, David.Lametti, ombud, mary.wilson, Andrea.AndersonMason, Brian, Terry, Jeremy, Laura, Jessica.ng, Aidan, cbcnb, city, tjnewsroom, info, Michael.Palmer, ME

Honourable Premier Higgs et al.

I have been listening with interest to your statements in support of your proposed health care plan which to date at least appears to be confined to elimination of night time hours of operation at emergency departments of several rural hospitals. I ask you, and the opposition parties, if they form government at any time in the future, to consider as part of Healthcare Reform the closure of the Autism Unit of the Restigouche Hospital Centre and the opening of an Adult Autism Centre in Fredericton, which is both centrally located and the location of current autism developments such as the Stan Cassidy Autism Team, the UNB-CEL Autism component of the UNB and the Department of Psychology at UNB which provides the student base to assist in some of these efforts.

In making this request I understand that many and perhaps most of you do not know me and will not take the time to consider my recommendation. For your information I have been advocating for evidence based autism services in NB, at all ages of persons with autism disorders, for more than 20 years. I am the holder of a Queen Elizabeth II Diamond Jubilee Medal for my autism advocacy and I was presented with an Oscar for Autism as a parent advocate by Paul McDonnell Ph D, in an event at the Delta Fredericton which was attended by ex premiers Bernard Lord and Shawn Graham both of whom I took the opportunity to thank those premiers for their efforts on early evidence based intervention, autism/ABA trained school aides and reversal of the decision to close the Stan Cassidy Autism team. I also worked with the late Andy Scott who initiated a private members motion for the development by the federal government of a National Autism Strategy. The current federal government is making rumblings about enacting such a strategy as it did also in the 2015 elections.

In all these activities and accomplishments I learned much about the realities of autism spectrum disorders including and especially the huge divide between the needs of those with high functioning skills and cognitive abilities who were previously described under the "Aspergers" label rather than autism and those, like my son who have severe autism and profound developmental delay. This group of severely challenged individuals comprise 50% of the autism spectrum according to the World Health Organization. The average life expectancy of persons in this group is 30 years shorter than persons in the general population. It is persons in this group that need the most significant health care assistance which was supposedly being provided at the Restigouche Health Centre but was not in fact provided at all as disclosed by the impressive investigation by the Ombud team which resulted in the "Failure to Protect" report which documented the neglect and abuse of patients and residents at the Restigouche Hospital Centre.

More information relevant to the complete lack of value of the Restigouche Health Centre was reported by CBC NB reporter Karissa Donkin who obtained via access to information request reports of serious, rampant disciplinary issues at the RHC in her very aptly titled report "Violence and threats, negligence, insubordination led to discipline at troubled hospital", last updated August 7, 2019.

Parent advocates have long sought an alternative to the RHC and other failed locations for youth and adults with severe autism challenges to receive appropriate health and residential care and treatment. The beginning of the exposure of this history takes place in October 2005 as set out in the accompany Toronto Star article. You will also note that I am quoted in that article as an autism advocate. I mention this to prove how long I have been fighting, together with other parent advocates, for appropriate, human, professional residential care and treatment for youth and adults with severe autism challenges.

Apart from my involvement in these autism issues I am also a practicing lawyer and it is my respectful opinion that the placement of adults like my son, once I can no longer provide care for him in the RHC would constitute of articles 25 and 26 of the UN Convention of the Rights of Persons with Disabilities. I will not attempt to make a presentation on the international legal aspects of this matter in this email. I have long encouraged my fellow parent advocates to avoid the courts and seek political dialogue to make gains for provision of autism services. At this point in time though given the disclosures by the Ombud team in Failure to Report and by the discipline issues reported by the reporting of CBC reporter Karissa Donkin it is clear that there is no legitimate basis to keep sending the adults with severe autism to the Restigouche Hospital Centre. It should be noted that UN CRPD optional protocol was signed by the Canadian government was signed in 2018 which provides ultimate authority to address these issues to international decision.

I acknowledge that I am considering invoking the UNCPRD and the optional protocol but I still believe unless these concerns are once again dismissed that discussion is the best way to proceed. I hope that the addressees to this email and their colleagues will consider closing the HRC autism unit and expanding the existing facilities in centrally located Fredericton which has been gathering some autism expertise and will have no difficulty attracting autism professional expertise.

I would also ask the governments of NB to once again consider the Autism Village Model as a provision for adult autism residential care and treatnment. The model was first mentioned in the Autism Society New Brunswick submission to government in 2008. That submission followed a survey conducted by ASNB. The The model was developed in more detail by Professor Emeritus Paul McDonnell in his 2015 paper on the Autism Village which was presented to then Social Development Minister Cathy Rogers. Professor McDonnell was accompanied in making that submission by another parent advocate Cynthia Bartlett who like myself had many years of personal and public involvement with adult autism issues particularly the 50% of persons with autism and intellectual disability.

Professor McDonnell to which I have linked you above first summarized the Autism Village concept in a 2010 CBC interview with Dan McHardie:

Paul McDonnell, September, 2010, CBC Interview with Dan McHardie (emphasis added).

"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 behaviourally trained supervisors and therapists. 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 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 residential 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."

The Weber Report provided no credible plan to overcome the difficulties of attracting autism specific expertise, or the employee discipline issues at the Restigouche. It did not even touch on the impact on families of being separated from their family members sent to our northern border 4-5 hours distant from the bulk of the NB population. There is no credible basis for continuing to banish adults with severe autism so far from families and so far from NB autism expertise. It is a well known "secret" that it is done for economic development reasons.

I hope that our political leadership is open to changing its mind on this important issue. I hope that the resort to litigation, to the UN Convention on the Rights of Persons with Disabilities does not continue to be flagrantly violated in the name of economic development in the North. I will be happy to discuss this matter with anyone interested or if you prefer i will be happy to debate these matters.

Respectfully,

Harold L Doherty LL. B.

Conor's Dad

Queen Elizabeth II Diamond Jubilee Medal Recipient (Autism Advocacy)

Location of an Autism Unit in the Restigouche is "JUST NONSENSE" - Move the RHC Autism Unit to Fredericton

If you look at the bottom of this NB government map you will find the heavily populated communities of Moncton, Fredericton and Saint John. If you look at the very top you will find Campbellton where you will find a shrinking rural population and the Restigouche Hospital Centre (RHC) where NB MLAs have sent youth and adults with severe autism challenges

The Restigouche Hospital Centre (RHC) has an autism unit but has failed to protect and provide decent residential care and treatment for its residents. It is located as far as possible from Fredericton autism expertise and from the vast majority of NB population and families in the south

Ken McGeorge is recognized as a Health Expert (eg. CBC) and is currently a Telegraph Journal Health Care Reform columnist.  In the Friday, January 24, 2020 edition of the TJ he provided a commentary "How many MLAs does it take to reform health care?" in which he made a number of observations about the sad state of health care in New Brunswick and how it is part of a problem which could interfere with NB efforts to attract new populations to locate and live in our province.  One of the issues he touches on is the attempt to replicate health services requiring expertise in rural, small population communities around the province.  He calls such attempts "nonsense" and cites a recent example which shows by way of contrast what SHOULD be done in locating health care facilities  - the location of the "youth treatment centre" in Moncton:

"The organization of clinical services in the province is still a matter that causes grief, with multiple small specialty programs operating independently and struggling as a result. ... But all communities - particularly Fredericton, Moncton and Saint John, combined with the other "regional" centres, compete and apply enormous pressure on MLAs to preserve that which is hard to justify on either economic or qualitative grounds. The recent decision regarding the youth treatment centre is one such illustration. Based on evidence and quality programming, everyone who understood the facts supported locating the centre in Moncton. Why? Because Moncton has specialized  personnel and services that do not exist anywhere else in the province. To think that it is possible to replicate that support in a community distanced from academic and research centres is just nonsense."    (Bold highlighting added -HLD)

It is long past time to move the Autism Unit from Campbellton on our Northern Border where it is part of the failed Restigouche Hospital Centre to Fredericton where it would be much more centrally located and close to autism expertise which has developed over the last 15 years and could much more easily expand on that expertise. The Ombud report "Failure to Protect" has documented the abuse and neglect of residents of the Restigouche Hospital Centre (the RHC). CBC's Karissa Donkin has reported major, serious employee discipline issues, including violence, threats and insubordination,  at the RHC. Parent advocates have long called for an end to the autism unit and establishment of an Autism Village of  autism trained residential care facilities with a centre in Fredericton to provide education, training and oversight, with permanent residential care for the most severely challenged, dating back to the 2008 submission by the Autism Society New Brunswick.

The McGeorge column is a major step forward in understanding why the Failed  RHC in Campbellton has attracted MLA support despite its failure in providing humane, professional and responsible care for its residents including those in the RHC Autism Unit.  Stop making excuses and move the RHC Autism Unit to Fredericton near the Stan Cassidy autism team, the UNB-CEL autism program and the UNB Department of Psychology.  

Build the autism centre in Fredericton and develop autism residential care homes in locations around the province according to population needs.