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.

Liberal Party of Canada - Virtual Weekend of Action - LOL - Waste of Your Time???

"We’re inviting you to take part in our next Virtual National Weekend of Action, this July 18th and 19th, from the comfort and safety of your home! ....... On the road to Election Day 2019, more than 90,000 Liberal volunteers made over 21 million knocks and calls to start new conversations with Canadians, and that hope and hard work made it possible to re-elect our Liberal government and keep Canada moving forward."

Photo by Harold L Doherty

PM Justin Trudeau visited Fredericton in early 2017.   I had autism issues 

to discuss and was actually handed the microphone although I was waved off 

by the Prime Minister of Canada and was not permitted to ask him a question. 

If you are thinking of joining the Liberal Party of Canada you might want to think again. Canadians have been calling for a National Autism Strategy since 2003 when the late Fredericton Liberal MP Andy Scott announced his intention to seek a National Autism Strategy.  Peter Stoffer NDP MP from Nova Scotia joined Andy in 2006 to pass a private members motion calling for a NAS. Liberal MP Shawn Murphy of PEI  also addressed the issue unsuccessfully in 2006.  In the 2015 election Fredericton Liberal Candidate Matt DeCourcey stated to me that the Liberal Party was going to pursue a National Autism Strategy. It never happened.

Instead we have seen  information that PM Justin Trudeau funneled hundreds of thousands of dollars of public money to his mother and brother for speaking engagements. Meanwhile no meaningful effort has been made by the Trudeau Liberal Government towards development of a National Autism Strategy.

I hope all Liberals Enjoy your Virtual Weekends of Action; just don't expect to see any meaningful action on any projects you bring to the table.  

Extremely Important and Overlooked: Physical Health and Autism Spectrum Disorder

Physical Healh is an Extremely Important and Overlooked Aspect of Autism Spectrum Disorders

Bridging the Gap Between Physical Health and Autism Spectrum Disorder

Regina Sala 1, Lorene Amet 2, Natasa Blagojevic-Stokic 3, Paul Shattock 4, Paul Whiteley 5

Affiliations expand

PMID: 32636630 PMCID: PMC7335278 DOI: 10.2147/NDT.S251394

Free PMC article

Abstract

Autism spectrum disorder (ASD) is a highly complex and heterogeneous developmental disorder that affects how individuals communicate with other people and relate to the world around them. Research and clinical focus on the behavioural and cognitive manifestations of ASD, whilst important, have obscured the recognition that ASD is also commonly associated with a range of physical and mental health conditions. Many physical conditions appear with greater frequency in individuals with ASD compared to non-ASD populations. These can contribute to a worsening of social communication and behaviour, lower quality of life, higher morbidity and premature mortality. We highlight some of the key physical comorbidities affecting the immune and the gastrointestinal systems, metabolism and brain function in ASD. We discuss how healthcare professionals working with individuals with ASD and parents/carers have a duty to recognise their needs in order to improve their overall health and wellbeing, deliver equality in their healthcare experiences and reduce the likelihood of morbidity and early mortality associated with the condition.

Keywords: ASD; autism spectrum disorder; comorbidity; inequality; physical health.

https://pubmed.ncbi.nlm.nih.gov/32636630/

Andy Scott,Began His Fight for A National Autism Strategy October 18, 2003; Canada Needs Another Andy Scott

Andy Scott at the Crowne Plaza, Fredericton, advocating for a National Autism Strategy as I looked on from the podium, Left,  on October 13, 2007. (Photo by Charles LeBlanc) Andy began his fight for a National Autism Strategy in Fredericton on October 18, 2003

Andy Scott began the fight for a National Autism Strategy for Canada in 2003 as set out below in an excerpt from my Facing Autism in NB blog, {Reporter Tali Folkens comments from the Telegraph Journal in italics):

"The struggle for a National Autism Strategy began many years ago including here in New Brunswick where Andy Scott issued a public call for a National Autism Strategy on October 18 2003:

""Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Tali Folkins, Telegraph Journal, October 20, 2003"

Andy Scott joined forces with Nova Scotia NDP MP Peter Stoffer and the two of them obtained the passing of a private members motion calling for a National Autism Strategy in 2006 which called for a National Autism Strategy with specific objectives:

Motion M-172, as passed by the House of Commons on Tuesday, 

December 5, 2006.

That, in the opinion of the House, the government should create 

a national strategy for autism spectrum disorder that would include:

a) the development, in cooperation with provincial/territorial  

governments, of evidence based standards for the diagnosis and 

treatment of autism spectrum disorder;

b) development, in cooperation with provincial governments,

 of innovative funding methods for the care of those with 

autism spectrum disorder;

(c) consulting with provincial/territorial governments and

 other stakeholders on the requirements of implementing a national
surveillance program for autism spectrum disorders; and

(d) the provision of additional federal funding for health research
into autism spectrum disorder.

British Columbia, which in many ways was the birthplace of Canadian autism advocacy with the Auton court proceedings, stepped up to the plate again in 2016 with the Liberal Party of Canada  Winnipeg Convention South Surrey-White Rock Resolution E-03 which called for Medicare Coverage for the Treatment of Autism and which was passed overwhelmingly by the National Liberal Party including support from prominent Liberal Bob Rae but was given the stiff arm by Prime Minister Justin Trudeau who has simply refused to act in government to implement his own National  Liberal Party's Resolution calling for Medicare Coverage for Treatment of Autism: 

There are Liberals and then there are Liberals. Andy Scott was renowned in New Brunswick for fighting for social causes including autism treatment and services. 

Photo of PM Justin Trudeau Above by Harold L Doherty, January 17, 2017 in Fredericton where he brushed off my attempt to ask him a question. I had intended to ask him about the Winnipeg National Liberal Party Resolution calling for Medicare Coverage for Autism. Medicare for Autism NOW! Excutive Directors Jean Lewis and David Marley sent a detailed Open Letter to the PM on April 2, 2017 and got a prompt reply from some unknown individual although it was not from the PM or anyone in his office.  .It appears the PM has no intent to act on the Medicare Coverage for Autism Resolution passed by the National Liberal Party in Winnipeg in 2016.

PM Justin Trudeau unfortunately does not appear to give a hoot about persons with autism disorders or their families as I saw personally in Fredericton when I was handed a microphone only to be waved off by PM Justin Trudeau and the mike passed to another person who read from a script which appeared to have been pre-approved by the local Liberals present.

I don't know if Andy Scott was still with us if he could make a difference in pushing the Justin Trudeau Liberal government to enact a Real National Autism Strategy. Given Trudeau's cold shoulder ignorance of WPG Resolution E-03 the answer is probably no. Trudeau just doesn't care and is willing to ignore the will of his own Liberal Party.

2008-2020: Dear NB MLA's: Still NO Autism Village Network in the Allegedly "Inclusive" New Brunswick

New Brunswick needs an institutional level of adult and youth residential care and treatment center for the more severely autistic. There are many existing models of care which could be adopted and existing examples abound, primarily in the United States. The Autism Society New Brunswick has also had discussions with long time autism mentor, clinical psychologist and professor of psychology (emeritus) Paul McDonnell around the development of a village model. This concept would envision an autism village with a central hub located in Fredericton. The hub would provide treatment and secure residential placement for severely autistic persons. 

The village component of the facility would include smaller buildings residential facilities specific to persons with autism disorders of varying severity and age. Fredericton is recommended as the location because of its relatively central location and its proximity to autism specific expert services such as the Stan Cassidy tertiary care pediatric team, the University of New Brunswick and the UNB-CEL autism intervention training program. It is also the seat of government and senior officials in health, family services and education would have ready access to the centre.

The autism village concept does not detract in any way from the community living concepts that have held sway for the past 30 years. It would address the need for residential care and treatment for autistic youths and adults with expert professional services and trained staff knowledgeable in autism disorders, interventions and behaviour management. The residents would be in close physical proximity to the general community in which they could be taken with assistance. Community groups like the Special Olympics and in particular the Autism Community Center could be tapped for volunteers to assist in providing recreational and exercise outings at community trails, parks, pools, and other recreational activity centres."

New Brunswick has known of the need for an autism village including a Fredericton based autism centre to provide training, oversight and long term care for those most severely affected by autism and related disorders since 2008 when informed by the ASNB and was reminded again in 2010 by Professor Emeritus (Psychology) Paul McDonnell and again in 2015 in a meeting with Professor McDonnell and parent advocates, parents who met again with NB government Minister Dorothy Shepard prior to the Hutch Tour and Report which put the breaks on further examination of the needs of adults with severe autism and related disorders.

Will you as an MLA take action to make the Autism Village happen or let our adult children with severe autism disorders fade away when their parents are gone? Can you face the challenges that parents face every day in loving and caring for our children who face severe, life shortening (30 years premature death) challenges every minute of their lives?

For Conor the North Riverfront Trail Has Been a BIG Help in Dealing with COVID Shutdown Anxiety

Conor Happy on the North Riverfront Trail (NRT) Fredericton April 21 2020

Conor Happy on the North Riverfront Trail (NRT) Fredericton May 14 2020

Conor Happy on the North Riverfront Trail (NRT) Fredericton May 23 2020

Conor Happy on the North Riverfront Trail (NRT) Fredericton June 5 2020

Conor has ALWAYS loved the Fredericton trails, especially the North Riverfront Trail. He never needed to be coaxed into walking on the trail and he has walked, walked briskly, run, jumped and flew. I have usually been able to get pictures because he is ahead of me.  I try to stay close and call to him to wait for Dad if he gets too far ahead.

When the COVID shutdown hit and he could not work at the Willie O'Ree we walked the trails especially the NRT but also Killarney.  We didn't wait for direction from ANYONE. We walked  1-2 walks a day, sometimes as many as 4 times. There was no congestion. While there have been some moments of anxiety for Conor they have not been even remotely what they would have been without the trail walking. Not taking anything for granted but for now we will continue with a proven means of helping Conor stay Happy.

Below are some pictures of Conor over the years loving his time on the North Riverfront Trail, Fredericton: