Advocating for Adult Autism Center 1 Year Ago At the New Brunswick Legislature

L: MLA Brian Kenny  R:  Harold L Doherty, Autism Parent Advocate

L: MLA Ernie Steeves R: Cynthia Bartlett, Autism Parent Advocate

L: MLA Trevor Holder R(1): Randy Dickinson, NBHRC Chair

R(2):  Barry Hemphill & R(3): Jane Mullin  Adult Autism Center Advocates

Pictures from adult autism center protest at the New Brunswick legislature 1 year ago. 

Pleasant meeting with an apparently receptive Minister of Social Development Cathy Rogers in July, 2015 but no signs of any progress since then. 

Medicare Coverage for Autism Treatment Resolution Passed by Federal Liberal Party at #WPG2016 Convention

Tweets and Retweets from the Oakville FLA and Medicare for Autism Now! 
indicate that the Liberal Party of Canada has passed the resolution calling for 
medicare coverage for autism treatment.

Moved by Liberal Party of Canada (British Columbia)

WHEREAS the rate of autism spectrum disorder (“ASD”) among Canadian children is 1 in 68 and rising;

WHEREAS Canada’s health care system currently excludes from coverage the recognized, science-based treatment for ASD called Applied Behavioural Analysis (ABA), despite the incidence of this neurological condition and advocacy from numerous citizen groups;

WHEREAS the BC Supreme Court, in 2000, found ABA was “medically necessary treatment” and “there were no effective competing therapies” and their decision was upheld in the BC Court of Appeal and the Supreme Court of Canada;

WHEREAS funding for ABA for ASD is insufficient and varies between provinces;

WHEREAS the lifetime cost of an individual receiving inadequate treatment (or none) for ASD is reliably estimated between $2.4 and $3.2 million, excluding indirect costs to society;

WHEREAS the US Government requires all states to provide treatment for ASD as part of state-wide Medicaid programs and 43 out of 50 states require private health insurers to provide coverage for the ASD treatment;

BE IT RESOLVED that the Canada Health Act be amended to include Medicare coverage for Applied Behavioural Analysis (ABA) for Autism Spectrum Disorder (ASD) or, alternatively, the Government of Canada work with all provincial and territorial governments to ensure inclusion of ABA for ASD within their respective Medical Services Plans

BE IT FURTHER RESOLVED that the Government of Canada provide funding to each province and territory to fully cover the costs associated with the provision of ABA treatment of ASD.

Will Liberals end health-care discrimination for Canadians with autism?

Medicare for Autism Now! Society

News Release

May 26, 2016                                                                                                                         

Will Liberals end health-care discrimination for Canadians with autism?

Winnipeg – In April, Prime Minister Justin Trudeau said, “How we treat the most vulnerable in society is very important.” Tomorrow, delegates to the national convention of the Liberal Party of Canada (“LPC”) can demonstrate their commitment to this basic Canadian value by ending decades of health-care discrimination against people living with autism spectrum disorder (“ASD”).

“The Medicare for Autism Now! Society (“MFAN”) congratulates the Liberal Party of Canada (British Columbia) for putting before the convention a policy resolution that proposes the Government of Canada, alone or working with the provinces and territories, provide Medicare coverage for Applied Behavioural Analysis (“ABA”)”

Said MFAN director, Jean Lewis, “Twelve years ago, our courts held ABA to be “medically necessary” and “a uniquely effective treatment” for autism. We agree with Hon. Bob Rae that it’s long past time for the Government of Canada to provide fully-funded health-care for people living with ASD.”

Image from Bob Rae, MP! 

@BobRaeMP on Twitter

During last year’s federal election campaign, LPC president, Anna Gainey, pledged the party is, “…committed to building an inclusive society for all Canadians” and will

“…take substantive action to address the barriers faced by Canadians with disabilities.”

Will Liberal delegates honour this pledge, follow the call to action by Hon. Bob Rae and live up to the Prime Minister’s statement of principle? 

Tomorrow, we’ll see.

For further information, contact Jean Lewis at 604-290-5737 or jean.lewis@telus.net

Facebook Reminds Me: No Progress On Adult Autism Care in New Brunswick During The Last Year, The Last 6 Years, Or The Last Decade

I received a Facebook "Memory" post today which  reminded me that yet another year had passed without any progress in adult autism care in NB. Parents in New Brunswick who advocated for early intervention did so knowing our children would be too old for any program if the government decided to establish an early intervention program.   We focused on that as an ethical matter though, that much good would result from early Applied Behavior Analysis for young children with autism.  We also succeeded in getting some autism trained teacher aides (now education assistants/aides) trained though the UNB-CEL Autism Training Program and we were able to persuade our government to reverse its decision to cancel the Stan Cassidy Center Autism services which provided consultation up to age 16.  Despite these accomplishments no progress has been made in estalishing an ADULT autism network with a center in Fredericton and group facilities around the province.  

Some of us have been advocating for adult autism care for over a decade. In September 2010 Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell made the following statement in of what was most badly needed as of that date,  a statement which is still true today 6 years later:

Paul McDonnell, September, 2010

"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."  (Bold highlighting added - HLD)

In the absence of any progress at all on the enhanced group home system linked directly to a major center as stated by Paul McDonnell in 2010 it appears more and more likely that my severely autistic, cognitively challenged, now 20 year old son Conor, will be sent to the Restigouche psychiatric hospital in Campbellton on NB's northern border with Quebec, far from his family in Fredericton, and without proper treatment, care and expertise, when I can no longer care for him in my home.

 I don't like to think that I scare easily but when I see the refusal of New Brunswick governments to construct a badly needed autism care and treatment network over the last decade ... I grow frightened, very frightened ... for my autistic son Conor  and the life that awaits him.

Restigouche Psychiatric Hospital

10 Gallant Street, Campbellton, NB
Far from most families in NB's major 
population centers in the South

Thank You Liberal Party of Canada in South Surrey - White Rock For Supporting Medicare Coverage of ABA Treatment for Autism

Below are (1) My expression of appreciation to the Liberal Party of Canada South Surrey - White Rock for its resolution in support of Medicare coverage for Autism Treatment followed by (2) the resolution itself.

1

I wish to thank the Liberal Party of Canada South Surrey – White Rock for your resolution calling for Medicare coverage of Applied Behavior Analysis for Autism. If the resolution is passed and makes its way into Medicare it will be of immense importance in improving the lives of many with autism and the families who love and care for them. I am a Fredericton NB   father of a 20 year old son with severe autism and severe limitations in speech and communication.  My son did not have access to intensive early ABA but has received some ABA in the school system without which he would not have been able to proceed in school and we would have been even more challenged in caring for him and having him live at home with us.  He has loved going to school and receiving ABA and it has been a wonderful experience for him. 

 

Our family experience is consistent with the overwhelming body of decades of scientific evidence supporting the effectiveness of ABA treatment for autism. The most comprehensive and credible review of the science supporting ABA is found in the American Academy of Pediatrics publication Management of Children with Autism Spectrum Disorders which stated with respect to ABA scientific support:

“The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4” (2007, confirmed 2012)

Many parents of autistic children across Canada have our fingers crossed hoping this very worthy resolution is passed and ultimately incorporated in Medicare.

The Liberal Party of Canada South Surrey – White Rock has this autism parent’s respect and appreciation.

Sincerely,

Harold L Doherty

Conor’s   Dad

Fredericton NB

2

The Liberal Party of Canada South Surrey - White Rock Resolution calling for for Medicare Coverage for the treatment of Autism:

Medicare Coverage for the treatment of Autism

WHEREAS the rate of autism spectrum disorder (“ASD”) among Canadian children is now a shocking 1 in 68, constituting a national epidemic and, for reasons unknown, continues to rise;

WHEREAS Canada’s “universal” health care system currently excludes from coverage the recognized, effective, science-based treatment for ASD called Applied Behavioural Analysis (“ABA”), despite the deplorable incidence of this neurological condition and advocacy from numerous citizen groups;

WHEREAS the BC Supreme Court, in 2000, found that ABA was “medically necessary treatment” and that “there were no effective competing therapies”, a decision which was upheld on appeal by the BC Court of Appeal and the Supreme Court of Canada;

WHEREAS funding in Canada respecting ABA for ASD currently is not only grossly insufficient, it varies widely between provinces;

WHEREAS the lifetime cost of an individual receiving inadequate treatment (or none) for ASD is reliably estimated between $2.4 - $3.2 million, excluding indirect costs to society; and

WHEREAS the US Government requires all states to provide treatment for ASD as part of state-wide Medicaid programs and 43 out of 50 states require private health insurers to provide coverage for ASD treatment;

BE IT RESOLVED the Canada Health Act be amended to include Medicare coverage for ABA for ASD or, alternatively, the Government of Canada work with all provincial and territorial governments to ensure inclusion of ABA for ASD within their respective Medical Services Plans.

BE IT FURTHER RESOLVED the Government of Canada provide funding to each province and territory to fully cover the costs associated with the provision of ABA treatment of ASD.

South Surrey-White Rock

Dear MLA: New Brunswick Needs an Adult Autism Center ... Yesterday!!!

My son Conor,  a great joy in my life, now 20 years old, suffers from 

severe autism disorder wearing his adult autism center advocacy t-shirt. Today I sent a letter 

to our Fredericton North MLA Stephen Horsman hoping to push him to advocate for 

Conor and other adults with autism in NB who will need residential care and treatment. 

May 6, 2016

Stephen Horsman

MLA Fredericton North

Dear Mr. Horsman:

Re: 1 in 68 Adults with Autism (US CDC) will Need Residential Care Options

I am the father of a 20 year old son with severe autism living in your riding of Fredericton North.  There are currently no adult autism specific residential care and treatment facilities available in New Brunswick to provide the residential care and treatment he will ultimately need. If my life was terminated early by accident he would most likely be sent from where he has lived here in Fredericton to the Restigouche Psychiatric Hospital in northwestern New Brunswick far from remaining family members and friends who know and love him.  I am writing you to once again request your assistance as the MLA for my riding to work with your colleagues in government to build the adult autism center and with local facilities around the province as advocated for many years by parents and key professionals like Professor Emeritus (Psychology) Paul McDonnell.  The network would be built around a center in Fredericton which would provide treatment, permanent residential care to those most severely affected by autism and related disorders and oversight and guidance to the residential care and adult treatment centers around the province.

Paul McDonnell, CBC, September, 2010:

"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."

Respectfully,

Harold L Doherty

Fredericton, NB

Ontario Autism Protest Today, May 5th, 12:00 Noon at Queen's Park

Media Advisory - Autism community and their allies will protest Wynne government's plan

TORONTO, May 3, 2016 /CNW/ - On Thursday May 5th, between 12:00 noon and 3:00 p.m., hundreds of members of the autism community will protest in front of Queen's Park to show their opposition to the government's decision to cut Intensive Behavioural Intervention (IBI) therapy for children aged five and older. People with ASD, their families, and the professionals who work with them will stand together against this unethical decision.

In an extraordinary show of bi-partisanship, both Progressive Conservative and New Democrat MPPs have declared their opposition to the plan. Both party leaders and their shadow cabinet critics will speak at the protest. In addition, labour union leaders from CUPE, ETFO, OSSTF, OPSEU, and the OFL will lend their voices to the movement opposing the Wynne government's decision.

Since the announcement, the members of the Ontario Autism Coalition have been raising their voices across the province. Over 20 rallies have taken place outside the offices of Liberal MPP's. Petitions have been gathered, letters and emails have been written, and families have been confronting the Premier directly at public appearances. So far, the Premier has kept to the same script she has been reciting since the original announcement. In response, parents have vowed that they will not stop their protests until their children get what they need.

The Ontario Autism Coalition is a non-profit Ontario corporation dedicated to advocacy and political action on behalf of people with autism.
www.ontarioautismcoalition.com

SOURCE Ontario Autism Coalition

Image with caption: "Ontario Autism Coalition (CNW Group/Ontario Autism Coalition)". Image available at:http://photos.newswire.ca/images/download/20160503_C3790_PHOTO_EN_681518.jpg

Image with caption: "#AutismDoesntEndAt5 (CNW Group/Ontario Autism Coalition)". Image available at:http://photos.newswire.ca/images/download/20160503_C3790_PHOTO_EN_681523.jpg

 For further information: Ontario Autism Coalition: Bruce McIntosh, President, 416-451-8315, bruce.mcintosh@ontarioautismcoalition.com; Laura Kirby-McIntosh, Vice-President, 416-315-7939, laura.kirbymcintosh@gmail.com; Sharon Gabison, Secretary-Treasurer, 647-892-4418, shar.gabison@utoronto.ca; Parents available for interviews: Brianne Brown, 519-217-4352, b_besley@hotmail.com; Steven Sherwood, 416-566-7234, steven_sherwood@yahoo.com; Behaviour Analysis Professionals available for interviews: Dr. James Porter, 289-937-6096, portejam@hhsc.ca; Nancy Marchese, BCBA, 416-889-7572, nancy@breakthroughautism.ca

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Awareness: Autism, Epilepsy, Seizures

The world now lights it up blue for autism awareness.

Purple day and the color purple are associated with epilepsy awareness.

It is time awareness is generated about how often autism and epilepsy occur together.

April is Autism Awareness month in the USA and Canadians have started following suit in April even though October was historically Autism Awareness month here.  Regardless of the month very few autism awareness events actually generate awareness of the real challenges that often accompany autism disorders.  Autism awareness events are generally aimed at helping young autistic children and their families have some fun ...  an important goal which should be continued.  Unfortunately though beyond the worthy goal of generating event based happiness almost no public knowledge of the serious challenges of autism including related conditions is generated. Epilepsy is one such autism related reality that is ignored in almost all autism awareness events. 

This is not to suggest that autism equals epilepsy or vice versa but studies do indicate a signficant statistical tie between the two.  A recent study Quantification of Risks of Seizures in Autism has examined this statistical relationship and concluded: 

Rates of epilepsy in children with autism are vastly increased in a wide variety of seizure types, known to have different etiologies, genetic and otherwise.

My son Conor received an autism diagnosis the day after his 2nd birthday.  It was only years later that I became aware of any connection between autism and epileptic seizures.  I noticed what I thought were absence seizures where he would stare off into the distance sometimes with his eyelids closed and brought them to the attention of his pediatrician at the time who advised that my description of thse events did indicate they were probably seizures but in the absense of the falling or collapsing behaviors did not recommend medication.  A couple of years later however Conor experienced the first of what would become periodoic grand mal or tonic clonic seizures with convulsions. falling, lost of consciousness. 

The serious possibility of epileptic seizures in children with autism disorders is some autism awareness that, in my humble opinion, should be generated for the public and particularly for parents of autistic children. 

My Adult Son Conor's Autism, Intellectual Disability and Seizures are Serious Disorders for Which There is No Meaningful Support Here in New Brunswick, Canada

On February 19 2016  I celebrated my son Conor's 20th birthday. It was a big day and we had a lot of fun despite his severe autism, intellectual disability and seizures. It was Conor's challenges that prompted us to seek our family doctor's guidance about his lack of key development milestones at the age of 1 1/2 years.  After referral to a pediatrician with a background in developmental delays, several types of testing to rule out possibilities and formal testing for autism he received his initial autism disorder diagnosis the day after his 2nd birthday.  Over time the seriousness of his autism disorder deficits, related intellectual disability, self injurious beghaviors and seizures including full, tonic clonic, grand mal seizures have become more difficult for him and left no room for any illusions about the hard realities facing him every day and into his future here in New Brunswick, Canada.  We have made much progress in early autism intervention and some progress in our schools but for adults with severe autism disorder and related disabilities there are no MEANINGFUL supports available here in New Brunswick the province that constantly promotes its community and inclusion values.

At age 20 Conor is not a child although he still has the rest of this year and one more year of school left before he transitions to full adulthood.  Here in New Brunswick Canada where our pre-school children enjoy the benefits of an early intervention program which has  achieved some international recognition, including from the Association for Science in Autism Treatment, and some improvements in our school system there is nothing available to help my son and others who suffer from severe autism disorder and the related disabilities that often accompany it ...  intellectual disability and epilepsy. 

I am not by any means giving up the fight for Conor's future.  I will enjoy my son's presence in my life and help him with every ounce I have in me  Following are some pictures, beginning with his "new blue shirt" photo from this past Friday, showing the joy of Conor that I continue to benefit from every day and will continue to fight for while I can.