Tuesday, December 25, 2018

An Autism Dad's Christmas ReGift for PM Justin Trudeau





 Dear Prime Minister Justin Trudeau:

I am pleased to ReGift to you this Christmas Day a gift previously provided to individuals with autism disorders and their families by the South Surrey-White Rock Liberal party, the Medicare Coverage of Autism Treatment Resolution E-03,  which was passed overwhelmingly at the Winnipeg 2016 Liberal Party National Convention.  This was truly a gift for many with serious autism learning challenges and the families who care for them. Or it would have been if it had been acted on.  Unfortunately it appears no one in the National Liberal Party thought to bring it to your attention since no action has been taken to enact the resolution into law.  I know you have much on your mind as PM and you must have left your copy of Resolution E-03 sitting unread in one of your many files.

I had hoped to bring it to your attention when you visited Fredericton. I had stood in line for over an hour and hoped to bring the resolution to your attention and was pleased when one of the Liberal party designated microphone handlers passed me a mike. However for reasons unknown to me you waved it off  just as they handed the mike to me denying me the opportunity to speak and instead you pointed to a gentleman with a prepared speech who read his script for you.

I also wanted to bring to your attention that  prominent Liberal MP Bob Rae had wholeheartedly endorsed the Medicare Coverage for Treatment of Autism resolution which, as I said, passed with overwhelming support in Winnipeg but has been ignored by you. I know Mr. Rae was knowledgeable on autism issues having met him at a kitchen party event at the home of the late Fredericton MP Andy Scott and a second time at Mr. Rae's Toronto offices with a team from Medicare for Autism NOW! I don't expect you to listen to me, a humble father of a son with autism, but perhaps you could speak to Mr. Rae about autism and he might be able to help you understand the importance of  medicare coverage for treatment of autism. 





This gift of the South Surrey-White Rock Resolution E-03 I would now like to Re-Gift to you Prime Minister Trudeau along with Merry Christmas holiday wishes for you and your family.

Harold Doherty
Fredericton NB

Saturday, December 15, 2018

Dear Finance Minister Ernie Steeves Will You Still Support Adult Autism Centre in NB in The Higgs Government?




Dear Ernie Steeves, Minister of Finance, President of the Treasury Board

I am forwarding to your attention 2 pictures, one of you standing by my son Conor Doherty who was, at the time, wearing his NB NEEDS AN ADULT AUTISM CENTRE ... YESTERDAY!!! shirt, which is shown in a close up in the second photo.  In your legislative career you showed considerable, and I believe genuine, interest in the need for an Adult Autism Centre in NB.  Not an Autism Community Centre which is largely focused on entainment for autistic children and to some extent less severely challenged autistic adults. The Autism Community Centres do not provide training for staff of homes with adult autistic residents nor do they provide oversight of any of those general homes.  The adult autism centre advocated for in the protest at the legislature was for the model described by Paul McDonnell in his 2010 CBC interview with Dan McArdie and in his 2015 paper on an Autism Village network with autism specific homes close to communities in NB and an Autism Centre based in Fredericton a centralized location close to the expertise at the Stan Cassidy Autism Team and to the UNB-CEL Autism program. 

I know that you brought a motion forward while in opposition calling for improved adult autism services and as stated I believe your interest in adult autism issues is genuine. I am very disappointed though to see that the capital budget information released to date includes reducing funding for autism services generally and failure to providng any funding to advance  adult autism services which would preclude an adult autism centre with a satellite model of connected autism specific homes in communities around NB.

Equally disconcerting is the information that funding WILL BE provided to the Youth Mental Health center which will be adjoined to the Restigouche Psychiatric Hospital Centre in Campbellton. The Mental Health Centre was approved for development by the previous Liberal government. It centre itself was the subject of much development but not for placement in Campbellton on NB's northern border.  The placement of that centre in Campbellton was slammed by prominent NB Liberals Bernard Richard who actively pushed for development of the centre and Michael B. Murphy QC. It places youths with mental health issues many hours distant from the vast majority of NB population which is located in the centre/south of NB. 



Locating youth with mental health care needs or adults with severe autism challenges in NB in a location about as far as possible away from the vast majority of families in NB is a clear violation of the UN Convention on the Rights of Persons with Disabilities. (CRPD).




The UN Convention on the Rights of Persons with Disabilities, which has been ratified by Canada,  states in Health article 25(b) and (c) that parties to the CPRD have agreed to:

b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c) Provide these health services as close as possible to people’s own communities, including in rural areas;
The Restigouche Psychiatric Hospital in Campbellton has been a destination for a number of adults with severe autism challenges usually accompanied by intellectual disability notwithstanding lack of expertise and distance from communities.  Fredericton is both centrally located and has seen the development of autism expertise which has been praised by the Association for Science in Autism Treatment in the US and has extended UNB-CEL Fredericton autism training to Saskatchewan and more recently to France.  The centre could provide treatment and permanent residential care for autistic adults in need and could provide training for, and oversight of, staff in autism specific care homes in communities around the PNB. 

I do not believe you have abandoned your understanding and concern for NB adults with severe autism and autism related challenges.  I know that party decisions are subject to many sources of influence. I know, however,  that your cabinet colleague Dominic Cardy in a previous political party lifetime also showed genuine concern.  I also know that another cabinet colleague, Jake Stewart, took decisive action in coming to the assistance of an autistic youth who was about to age out of his long time care residence upon reaching the age of adulthood in NB but was, because of Mr Stewart's intervention, permitted to remain.

I am writing you because I believe your interest in adult autism issues and your concern were and remain genuine and very positive.  I also know there are some others in your party who share such concerns. 

I ask you to counsel and persuade your government to take action to advance adult autism residential care and treatment facility which has been badly needed in NB for decades.

Sunday, December 9, 2018

Will NB Ever Honour Its Commitment to Adults with Severe Autism?



1.The PNB Commitment to Severely Autistic Adults

Mark Barbour, then a Department of Social Development spokesperson   stated in a 2011 Aquinian article by Karissa Donkin then a St. Thomas University journalism student, now a CBC journalist "What resources are available when you’re growing up with autism?":
"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."

[The Full article by K. Donkin, now a CBC reporter, follows this commentary as Exhibit A]

Above My Son  Conor 2011, 2015, 2016
No Progress has been made, no action taken, on the NB Department of Social Development statement that it wished  to build an autism residential facility for severely autistic adults who can not live on their own. 

In fact the PNB  has taken no action to recognize the importance of family by locating a youth with complex needs centre in Campbellton far from most families.   

Department of Families and Children Minister Stephen Horsman actually informed me in a meeting in 2016 that Campbellton was not too far for families in Fredericton (and by implication SJ, Moncton, St. Stephen etc) to drive to Campbellton each time they wished to be with their autistic family member. 

2. Families ARE actually important for severely autistic adults, as is Expertise and therefore - A Central Location in Fredericton

Families are actually important.  The government has changed the name of the social services department more than once and included reference to families for a while, so one would think they understood that fact.  They don't seem to realize though that an intellectually challenged, severely autistic adult would benefit from frequent family contact and interaction, the more frequent the better. An Autism Network of autism specific group homes around the province would reduce distance for almost all affected. Placement of an adult autism centre in Fredericton also makes sense because autism expertise has been developing in Fredericton and its central location would make access to treatment much more easily accessible for the vast majority of NB's population..  The autism group homes could be placed around the province to be close to families and could receive training, oversight and treatment on a temporary basis who would not require permanent care and residency at the Centre in Fredericton.

3. So Why Hasn't NB Acted to Develop An Autism Facility for Severely Autistic Adults?

In a previous comment I pointed out the role politics played, according to 2 prominent NB liberals, Bernard Richard and Mike Murphy in the government decision to locate a youth with complex needs centre far from most families in Campbellton.  I expressed my opinion that politics has also prevented the  development of the facility referenced by Spokesperson Mark Barbour above or the autism centre and network advocated by NB autism expert Paul McDonnell and myself and other experienced parent autism advocates in NB.  

An initial meeting with then Social Development Minister Cathy Rogers in 2015 left me feeling optimistic about the possibility of progress on adult autism issues. She came to our meeting with senior aides in attendance, asked serious questions, made no negative, dismissive remarks and in fact made suggestions about what might be needed to move forward. A year later in my meeting with Minister Horsman, mine and my son Conor's MLA,  none of those factors were present and the current Gallant government took no steps to address severe adult autism residential care and treatment issues.  


Exhibit A 

What resources are available when you’re growing up with autism?                                                        By Karissa Donkin, The Aquinian 

Fredericton’s Second Cup is loud and busy on a Tuesday afternoon and Conor doesn’t like it.
Conor is 15 years old and looks the part of a boy becoming a man. He’s nearly six-feet tall and growing sideburns. His blue eyes are staring out of the coffee shop’s window, where he’s watching a raging snowstorm blanket the downtown streets.
Every few minutes, when the noise gets to be too much to handle, Conor lets out a small scream and bats his ears with his hands.
The only person who can hold Conor’s attention is the man sitting across from him with the same blue eyes.
Since Conor was diagnosed as severely autistic and intellectually disabled 13 years ago, Harold Doherty has worked tirelessly to lobby the government to better support autistic children like his son. For the past five years, he’s operated a blog called Facing Autism in New Brunswick.
“There were no services here in New Brunswick … People had to stay active. There was a group of parents who did and I was one of them.”
But Doherty, a lawyer, is now in the fight of his life. As Conor nears adulthood, Doherty’s greatest worry is that the province doesn’t have the proper services for someone like Conor to maintain a high quality of life when they leave the public school system. He’s afraid Conor will fall through the cracks.
“My big fear is that he will simply be put into a room in Campbellton in the psychiatric hospital without any real life to live once I’m too old or deceased.
“On the other hand, I don’t want him dumped into one of the group homes they have.
“They don’t have staff trained to help him and they don’t have enough programs to really work with someone like my son.”
***
Autism is a developmental disorder that affects a person’s communication and social skills. The severity of the disorder ranges from the severe form that Conor has to Asperger’s, a more mild form depicted in movies like Rainman. The Centre for Disease Control and Prevention says one in 110 children have autism.
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.
“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.
“If they’re placed far away from their families, that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”
McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.
“They should have stimulating recreational, educational programs. That is absolutely essential.
“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”