One NB Government Agency Rubber Stamps Another and Voices of Adults with Severe Autism Challenges are Silenced Again

In NB the discrimination against adults with severe autism and related challenges including the 40-50% of persons on the autism spectrum with intellectual disabilities, many of whom suffer from migraine pain, seizures and an average life expectancy 30 years shorter than persons in the general population continues yet again.  Two PNB financed bodies, Autism Connections Fredericton and the Premiers Council on Disabilities,  have conducted a survey of adult autism issues in NB without addressing the realities facing those with severe autism and intellectual disability who constitute 40-50% of the autism spectrum population. Instead the their needs were expressly excluded by the authors of the Autism Connections Fredericton Adult Autism Tour report. Meanwhile existing discussions between parent advocates and government concerning the need for an Autism Residential Care and Treatment Village were held in abeyance for 2 years. 

Parents of children with autism and related conditions acting as the Autism Society of New Brunswick made a written submission on adult  autism residential care issues in 2008.  Among other points we requested consideration of an autism village network for residential care. It was ignored. 

The 30 year premature mortality rate faced by adults with autism and intellectual disability and other harsh realities facing many adults with autism and ID including epilepsy and the seizure related migraine pain shown in my son's pictures below are also ignored in the Autism Connections Fredericton Adult Autism Tour Report. In fact the harsh realities facing my son and others with severe autism and related disorders are intentionally excluded and "autism" is misrepresented by the Tour Report. The Premiers Council on Disabilities, like the Tour itself, is  financed by the PNB and the Council Chair has accepted the discriminatory and harmful report without providing any meaningful analysis of why the key points concerning autism were accepted.

The pictures that follow show the seizure related migraine pain that can occur very suddenly with my son, and others, who suffer from severe autism, intellectual disability and epilepsy very common matters for many with autism and intellectual disability which are not discussed in either the ACF Adult Autism Tour report or the Premiers Council on Disabilities Disability Action Plan July 2020:

The last 2 years have seen no significant developments in adult autism residential care and treatment as governments awaited the Adult Autism Tour Report conclusions which dragged on for 2 years and produced nothing but a mess of misinformation and which suppressed public knowledge of the harsh realities facing adults with severe autism and related conditions.  

The loss of those 2 years constitutes harm and discrimination against autistic adults with severe autism by the Autism Connections Fredericton and the Premier's Council on Disabilities as does the total exclusion from the "Tour Report" of any discussion of the serious challenges facing adults with severe autism and related disorders in NB." 

In 2015 before Dr. Paul McDonnell focused his autism efforts more and more  on the government financed and policy restricted Autism Connections Fredericton  he attended a meeting organized by me with then Social Development Minister Kathy Rogers with myself and fellow autism parent advocate Cynthia Bartlett in attendance. Dr. McDonnell presented his autism village network proposal to Minister Rogers with some input from myself and Ms. Bartlett.  I was optimistic after the meeting but we never heard anything further. 

In 2019 myself and 2 autism parent advocates, along with former cabinet Minister Tony Huntjens, met with Minister Dorothy Shephard. and again spoke about adult autism needs and the Autism Village Network proposal.  We have received no response in respect of our discussion in that meeting.  

In the meantime the ACFredericton Adult Autism Tour was organized by Rick Hutchins who has forged a career in seeking government projects but no experience as an autism parent and no formal education that I am aware of with respect to autism and related conditions.  Dr McDonnell joined him in that effort to my serious disappointment.  

The autism tour was a waste of time at best. Parents do not need Rick Hutchins to tell us that respite care is an issue facing many families with an autistic member. In fact that was an issue referenced in the 2008 ASNB Youth and Adult Residential Care and Treatment report submitted to the PNB on January 30 2008. We have also known for 12 years that serious consideration had to be given by PNB to establish a humane and evidence based adult residential care and treatment. We also brought that to the attention of government in the 2008 ASNB Report along with a request for an Autism Village Network to address those needs.

The government financed Premiers Council on Disabilities has rubber stamped the Adult Autism Tour Report which was financed by the PNB and conducted by the Autism Connections Fredericton which is also  itself largely financed by government. The ACF like all PNB financed community centres must comply with the policies dictated by the PNB including public statements they can make.

Parent advocates of adults with severe autism disabilities who had been involved in advocating for early autism programs, autism trained aides in the schools and reversal of the decision to close the Stan Cassidy Centre, did not have their issues addressed in the Report. Adults with severe autism,  adults who can not speak for themselves and who speak through their parents, were thereby dismissed or ignored in this process.

The ACFredericton Tour and its embrace by the Premiers Council Action Disability Plan July 2020 has caused harm and discriminated against adults with severe autism and related disorders by misrepresenting "autism",  burying the realities of those with severe autism and causing 2 more years of delay or excuses for  delay for 2 more years by the Province of New Brunswick.

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-…"

Adult Autism NB 2020? Will NB Continue to Violate the UN Convention on the Rights of Persons with Disability or Will it ......

Adult Autism Disorders NB 2020? 

Proper Residential Care and Treatment?

Will NB Continue to Violate the UN Convention on the Rights of Persons with Disability of NB adults with severe autism and intellectual disabilities or Will it End the Restigouche Hospital Atrocity, close the Restigouche Hospital and start work on a Fredericton based autism centre with a village of autism specific care homes in communities around the province for adult persons with autism and a variety levels of need of autism residential care and treatment? 

I asked this question of our MLAs in November 2018.  I received no real answer to my question.   

The Ombud Report issued in 2019 "Failure to Protect" provided clear and compelling evidence that  the proposed youth mental health centre which has now been scheduled to be established in Moncton would not provide appropriate services and care.  The evidence in that report confirms confirms that the Restigouche does NOT provide proper services and is not an appropriate setting for adults with serious autism and intellectual disabilities.  

The Karissa Donkin CBC report on disciplinary issues "Violence and threats, negligence, insubordination led to discipline at troubled hospital" also confirms that there are very serious disciplinary issues at the Restigouche which is located on our Northern border as far as possible from our larger populations and far from most NB families. The location  makes it difficult to retain professionals for the Restigouche and to maintain a disciplined, properly trained work force.

In New Brunswick very substantial gains have been made with respect to the provision of health, education and social services to persons with Autism Spectrum Disorders.  Our early autism intervention program has achieved national AND international recognition based on the excellent work of the UNB-CEL Autism program at UNB Fredericton. Teacher aides and Resource Teachers have received autism training from the UNB-CEL program and the Stan Cassidy Centre Autism team provides autism consultations up to age 19. NOTHING however has been done to provide for professional, decent, humane autism residential care and treatment for adults. 

Paul McDonnell Ph.D., and a Canada wide leader in developing evidence based autism treatment,  was a key player in establishing the program which forms the basis of these services and he also, in consultation with parent advocates, developed the NB Autism Spectrum Village Proposal which was presented to the Gallant Government, then Social Development Minister Cathy Rogers, in 2015.  The "Village Proposal" would provide for the establishment of an Autism Centre in Fredericton, the home of NB's current autism expertise and centrally located. The centre would provide training and oversight for staff in homes around the PNB close to families in all parts of the province.  It would also provide, from its central location, permanent residential care for those most challenged by autism and related conditions. 

It Appears Inclusive Community New Brunswick Will Continue to Exile Adults with Severe Autism Far From Families and Autism Expertise

Photo of my son Conor submitted to the Aquinian for an article by 

then Aquinian journalism student Karissa Donkin in 2011. No progress in residential care and treatment for severely autistic adults in New Brunswick has been made since that article or since Conor's autism diagnosis 19 years ago at age 2. 

One of the people interviewed by Karissa Donkin was Mark Barbour who was then the a spokeslperson for the Department of Social Development as it was then called. He gave a specific acknowledgement of the lack of adequate long term care and treatment for adults severely restricted by autism disorders. He also  stated that the PNB wanted to build an autism specific  facility to address these needs:

New Brunswick provides care both in a patient’s home and in residential facilities for more than 6,250 adults under 65 with disabilities, including autism, says Department of Social Development spokesman Mark Barbour.

But Barbour admits the province needs to do more to help autistic adults.

“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.

“These individuals require services and supports designed to specifically meet their high care needs.”

The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said.

Not only is the current system not comprehensive enough for adults with varying degrees of autism, but it’s also expensive, says child psychologist and autism expert Dr. Paul McDonnell.

Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or out of province."

Today despite NB's, in particular Fredericton's, success in establishing an internationally recognized early autism intervention program, the province has not lifted a finger to address the needs of severely autistic adults in need of long term residential care and treatment.  Adults with autism are still exiled to the Restigouche Psychiatric Hospital in Campbellton, on NB's Northern Border 4-6 hours drive from family members in central and south NB and 4 hours drive from the autism expertise that has been developing in Fredericton during the last 2 decades. 

In an October 6 2016 interview by Jeremey Keefe of Global news the PNB released a statement which makes it appear they are planning to address the needs of adults with autism including adults severely affected by autism requiring long term residential care and treatment:

Advocate says services for adults with autism lacking in N.B.

"Due to the severity of his son’s condition, Harold has to look after Connor around the clock, save for the time he spends in school.

For now it’s manageable, but Harold says knows it isn’t sustainable in the long-term and eventually Connor will require assisted care.

But the lack of a facility where he and his son can call home could make that phase of his life more difficult than need be, and he doesn’t think they’re the only ones.

“If I were to keel over as we speak, they would be sending him to the Restigouche psychiatric hospital in Cambellton, which is obviously a fair distance away,” Harold said.

“And it’s far away from most of the population and most of the families in New Brunswick and it also doesn’t have the expertise we have right here in Fredericton.”

“What we’d like is a rational and humane adult care treatment centre and network … based right here in Fredericton,” explained Doherty.

In a statement, the provincial government said that they recognize “the need to provide high quality services to our province’s families and individuals living with autism.”

The statement also mentioned that the Department of Social Development in collaboration with the Department of Health and in consultation with families of adults on the high end of the autism spectrum are currently developing a diverse approach to autism that would meet the needs of all those affected by the disorder; from those on the lower end of the spectrum to those at the higher end as well as parents and caregivers.

The Global news story makes it clear that the information from the Department of Social Development was provided in a statement and was presumably carefully considered before release. The  Department expressly states that it is consulting  with families of adults on the high end of the spectrum with no mention of  families with adults on the low or severe end of the spectrum.  It appears that adults with severe autism requiring the autism expertise in Fredericton and the long term residential care and treatment of an adult autism centre will continue to be exiled to Campbellton far, far from their families.