Bumping Into Shawn Graham - A Premier Who Made A Difference For NB's Autistic Children

Above Shawn Graham commits to allocate resources to autism children in New Bruswick, 2010

Below Shawn Graham and late Fredericton MP Andy Scott who advocated for autism services in Ottawa spend some time with the kids at Autism Intervention Services, Fredericton

On the way back from a visit to the Eagle's Nest with Conor I stopped to grab Conor a pop at a service station.  I didn't recognize the gentleman standing in front of me until he turned around and said hello.  It was a genuine pleasure to bump into Shawn Graham a genuinely nice guy and a premier who did much to help autistic children in NB.   

I know first hand that he expanded on the early intervention autism services begun by former premier Bernard Lord and provided an unambiguous commitment to train 400 teacher aides and resource teachers at the UNB-CEL Autism Intervention Training progam that had received international recognition. His specific commitment was to train 100 per year for 4 years and he kept that promise despite intense pressure from some in the Department of Education who saw career possibilities for themselves by bringing the program in house under their direction.   

NB is a small province and sometimes you bump into people of prominence. That is all well and good.  When it is a premier who did so much for autistic children it is a real treat and makes my day.

Another Conor Seizure Today; Fortunately It Happened On A Cushy Living Room Couch With Dad Right There

Conor very happy on Friday, April 29 2016.  This Friday things were a bit

different as Conor suffered a grand mal, tonic clonic seizure. On the positive 

side it happened on a cushy couch in our living room with Dad within arm's 

reach and Conor himself handled it well. It was still scary though.

At 3:35 today I had just finished a phone discussion on a legal matter and returned to the living room where I have a table and my laptop so I could do some work.  Conor was sitting directly in front of me on one of 2 living room couches.  As I sat down Conor's head kicked back and his eyes rolled back in his head.  He began convulsing  violently.  Fortunately the couch had large soft cushions and Conor suffered no impact to his head. He also turned to his side himself so that any fluids drained out without him choking and he then put his knees on the floor and bent over the cushion seats so he was not at any risk. I was there holding him throughout and timed the process.  The worst convulsions last between 45-60 seconds although his body still jerked for awhile and he did not regain bodily control or speech for a few more minutes.  ..  Not the first time I have been there for a Conor seizure.  It never gets real easy but it is not quite as scary as the first couple of times.  That said the location and an adult presence (me) assured a degree of safety that may not always be around for him and the outcome might be different on some future occasion.  ... For now though Conor is resting comfortably on the other living room couch .. eating pizza.  And life is good.

I Will Not Quit Fighting for Humane Services for NB Adults with Severe Autism - I Thank Ernie Steeves and All Who Join the Fight

Left  to Right: Brian MacDonald, Jane Mullin, Glen Savoie, Crystal Kelley,

 Ernie Steeves, Conor Doherty, Harold Doherty Stewart Fairgrieve, Charles Leblanc

It was a privilege yesterday to meet and enjoy the support of Ernie Steeves, Brian MacDonald, Glen Savoie and Stewart Fairgrieve in the NB Legislature fighting for decent autism services. Jane Mullin, Crystal Kelly and Charles LeBlanc  also took part outside.  Unfortunately Ernie Steeves motion seeking to improve autism services was thoroughly gutted by the Liberals of Donald Arseneault, and Stephen Horsman.  It is  important to say THANK YOU to those like  Ernie Steeves, Brian MacDonald, Glen Savoie and Stewart Fairgrieve who have made great efforts to improve autism services in New Brunswick. 

Although I was very ticked off  yesterday at Stephen Horsman, the MLA for my riding  and Minister of the newly named (yet again) Family and Childrens Services I bear him no ill will. I also have to give him some support.  As a parent who was involved with other parents in the successful advocacy for the establishment of NB's internationally recognized early intervention program and school services I know autism advocacy is not easy for anyone even a Deputy Premier and cabinet minister.   And Minister Stephen Horsman has contributed in his own way by walking with autistic children in Superhero walks and helping cut the cake for the reopening of the Autism Connections Resource center.  

It will obviously be necessary once again to fight entrenched interests to try and estblish the Adult Autism Center and Network that NBers with severe autism need so badly.  In the meantime many severely autistic adults will be banished to the Restigouche Psychiatric Hospital in Minister Donald Arseneault's riding on our northern border with Quebec.  

It will be important to gather the support of friends to overcome the entrenched interests in the Liberal Party that want all of NB's severely autistic adults to live in Minister Donald Arseneault's riding at the Restigouche Psychiatric Hospital.  

NB Adult Autism Residential Center – Information Protest at the Legislature – Weather & Autism Related Circumstances Permitting Thursday, June 30, 2016

My son Conor and I will, weather and autism circumstances permitting, be conducting an adult autism center information protest this Thursday June 30 at the Legislature. 

New Brunswick has received world recognition for it’s bilingual early autism intervention programs and families have moved to NB from elsewhere in Canada to obtain early autism  intervention services for their autistic children.  We have also made very significant gains in education with hundreds of autism trained education assistants and BCBA qualified resource teachers and assistants.  Despite the expertise developed in autism services successive governments have refused to develop the autism center and network recommended by NB autism expert Paul McDonnell in a 2010 CBC interview even though Department of  Social Development Media Representative Mark Barbour in a 2011 interview with then Aquinian journalist/student, now CBC journalist Karissa Donkin stated that the PNB wanted to develop an adult autism residential center to provide care for those with severe autism:

“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 expertise to provide the specialized services for autistic youth and adults exists in Fredericton where the early intervention programs were developed with UNB-CEL autism intervention programs, assistance from UNB Psychology were available and willing. The bilingual training has proven very effective.  But autistic adults have been sent far from the largest segment of the NB population at the Campbellton Regional Psychiatric Hospital on our Northern border with Quebec and in Spurwink, Maine in the United States.  Such separation from families can be harmful as discussed by NB autism expert Paul McDonnell in a 2010 CBC interview

“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.”

Harold L Doherty

Conor’s Dad

hldoherty5463@gmail.com

506 447-1592

NB Has Gone Backwards In Understanding and Commitment to Meeting Adult Autism Needs Since 2011

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.

Mark Barbour, NB Department of Social Development spokesperson,

A Place for Conor, The Aquinian, by Karissa Donkin, March 24, 2011

Many politicians love to participate in Superhero Walks for Autism.  They get to actually have fun, along with the children on the walk, and then pose for publicity photos which imply that they are knowledgeable about autism and are working on the behalf of persons with autism.  Unfortunately such walks do not create any real autism awareness, or lead to needs being met; particularly needs of autistic adults.

In meetings with the Gallant Government's 2 Ministers of Social Development to date, including one held with Minister Stephen Horsman yesterday, there was civility and apparent understanding of the need to address adult autism needs.  It was clear yesterday though that no steps had been taken in addressing adult autism needs in the past year since I, along with NB autism expert Paul McDonnell and fellow autism parent advocate Cynthia Bartlett, met with then Minister of SD Cathy Rogers.  Minister Horsman yesterday actually made statements endorsing the role of the Regional Psychiatric Hopital in Campbellton and asked whether autism specific services were needed. An indication of the extent to which those statements indicate a regression in understanding of, and commitment to providing services to meet the needs of, autistic adults can be gleaned by reading information in a March 2011 article by Karissa Donkin then a journalist with the Aquinian.

On March 24 2011 an excellent article written in the Aquinian by then student Karissa Donkin (now a journalist with CBC after a tour with the Brunswick News papers) detailed the need for adult autism services in NB.  The following excerpt is from that article.  In the article Mark Barbour, then a Department of Social Developent spokesperson, stated very clearly that more had to be done to help autistic adults  including provisio of autism specific  services.  He also stated that the Province of NB wanted to build an autistic adult residential facility to provide permanent care for severely autistic adults who can't live on their own:

"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. [The CDC now estimates 1 in 68 - HLD]

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.”

Ernie Steeves MLA Moncton Northwest To Bring A New Motion for Adult Autism Care

Last year I spoke on the needed care for adults with Autism. It was turned down by the government. I have made a new motion that I hope will be debated in the next few weeks. This is the speech from last year. – Ernie Steeves, MLA, Moncton Northwest

The fight for needed services for adults with autism has been very difficult.  We have fno meaningful success in that fight in stark contrast to the gains made on behalf of early intervention and school services for NB autistic children and youth.  There have been few allies in the fight for adult autism services.  Dominc Cardy of the NDP has been a strong supporter of adults with autism outside the legislature.  In the legislature support for adults with autism has been sparse.  In the past year two strong advocates emerged from the Conservative Party - Jake Stewart who fought successfully for a young autistic man who was on the verge of being removed from his residential facility because he was about to hit an arbitrary age limit for remaining in the facility and Ernie Steeves who brought the motion in 2015 shown in the video above.  It is very encouraging to learn that Ernie Steeves will continue with a motion for adult autism care in the next sitting of the legislature. 

Below - Ernie Steeves at the Legislature, May 2015, with Cynthia Bartlett, Parent Autism Advocate

People Have Moved TO NB? Seriously? Yes! For Early Autism Intervention Services for their CHILDREN! We Can Do It For Autistic ADULTS Too!!

Unlike adult autism services where New Brunswick has failed to take comprehensive action  to provide professional, accessible adult autism treatment and services the PNB has received recognition for its early intervention services developed to the point that familes from elsewere have moved to New Brunswick so their children with autism disorders can receive evidence based early intervention. NB has developed early intervention and school based services for young persons with autism. Given the developed autism expertise why has NB refused to take action to develop adult autism care and treatment, particularly for those most severely impaired by their autism and related disorders?

Early intervention services in NB were featured in a Toronto Star interview with the Forsyth family who moved here from Toronto so their children could access New Brunswick's early intensive behavioural intervention.  

"It had taken months of referrals, paperwork and lineups just to get the boys assessed. Then came worse news: they would have to wait at least two years for provincially-funded treatment in Toronto.

Private therapy, which would cost tens of thousands of dollars a year, was out of the question for Forsyth and her husband Erik, a steelworker in the highrise building industry.

So they opted for a radical solution. Last winter, they packed up their three preschoolers and moved to New Brunswick after Forsyth learned the wait times there would be a couple of months.

A year later, Forsyth, 29, is homesick, but not sorry.

“It was either that or keep waiting in Toronto,” she says over the phone from the family’s rented duplex south of Moncton. “I couldn’t do that, it was too hard.”

Since last May, her 3-year-old sons have each been receiving 20 hours a week of intensive behavioural intervention delivered by two therapists in their home and funded by New Brunswick."

There have been informal reports of other families with autistic children moving to New Brunswick including some military families who sought postings to Base Gagetown so their children could access autism services. Further NB autism expert Paul McDonnell  noted years ago in a 2010 CBC analysis   that New Brunswick can be a leader in autism services (September 24, 2010)  David Celiberti of the Association for Science in Autism Treatement responded to the title in his commentary on the NB autism intervention model: ASAT Responds to Canadian CBC’s “N.B. Can Be a Leader in Autism Services (October 23, 2010)”.  In that article Dr. Celiberti stated:

"I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services,” September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families."

New Brunswick has achieved acclaim for its early intervention and school autism services.  As one of the parents involved in advocating for those services I am very pleased but I am extremely disappointed with the lack of effort by our provincial governments with respect to providing the necessary adult autism care and treatment. In his September 24, 2010 article Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell stated:

"What remains to be done? 

While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups. 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 behaviorally trained supervisors and therapists. Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities. 

The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger’s Syndrome that have no access to professional services of any kind. 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 can do much, much better. 

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. 

In conclusion, New Brunswick has one of the most advanced intervention programs in Canada for children who are on the autism spectrum and the benfits for the children and their families are exceptional. 

Many families have moved to New Brunswick for services and, as well, many professionals have moved here because of the opportunities provided by this program."

(Bold highlighting added - HLD)

New Brunswick established itself as a leader in early intervention and school autism services in Canada.  NB governments since then though have refused to develop the adult autism center and group home system as recommended by NB autism expert Paul McDonnell in his 2010 CBC analysis.  Money is not really the issue in my humble opinion.  Some costs can be recovered by inefficient and inadequate ad hoc services currently provided.  Hospitals, schools and other facilities scheduled for closing could be used to build the center and group homes.  Everyone except the most unfortunate lives in buildings. It is not generally the structure that makes a building undesirable it is how it is used and what kinds of services are provided in the building and with what kind of oversight that could be adapted to provide autism treatment and for those most in need long term, permanent in some cases, residential care for those most in need.  Properly trained professionals and staff could make it happen by providing security, education, recreation and positive living experiences based on the inviduals living there and  incorporated in the community.

It is long past time to make it happen. We have proven we can do it for early intervention and school services. We can do it for our autistic adults too, autistic adults like my son Conor.