Family Day in New Brunswick For Most New Brunswick Families

Some adults with severe autism disorders and related conditions are sent to the Restigouche Psychiatric Hospital in Campbellton for temporary and permanent residential care and treatment far, far from their family members in the south. Family Day is great for an end of winter holiday but it would be nice if NB govrernments thought about adults with severe autism and the families who love them and care for them for as long as age permits

As this map from the NB Government Family Day site shows Campbellton, which has a declining population, is far from the bulk of the NB population in the southern part of the province in Fredericton, Moncton, Saint John.  Unlike Fredericton which is the most centrally located of New Brunswick cities the Campbellton facility does not have the growing expertise of the Fredericton area where the Stan Cassidy Centre autism team provides autism consultation to age 16 and the UNB-CEL autism program has provided services to NB, Saskatchewan and France. .

In my opinion Family Day itself is an excellent idea and I thank NB governments for providing a holiday at a point in our winter when NBers can use a day off, a break to just enjoy time, hopefully with our Families. I am disappointed though that the NB government does not recognize the importance of family in the well being and care of adults with severe autism conditions. 

When the Liberal government announced that a mental health centre would be situated in Campbellton prominent Liberal Bernard Richard made his displeasure known calling it "the worst decision he has seen in a while".

In  the same article former  NB  Health and Justice Minister Michael Murphy stated that this Liberal government bases its health decisions on political considerations in this case benefiting Donald Arseneault who has now gone on to a full time lobbying career:

"Bernard Richard...appalled by location of new centre.  I agree," tweeted Murphy.

Murphy blamed the decision on Liberal party politics and pointed to his former cabinet colleague Donald Arseneault as the likely source of the decision. Arseneault is the current minister of energy and mines and represents the riding of Campbellton-Dalhousie in the legislature. Arseneault made the actual announcement in Campbellton on Saturday, rather than Health Minister Victor Boudreau.

"Power of Donald Arseneault is evident by this," tweeted Murphy. "The location away from family for most young patients may only aggravate the condition.  But this government is intensely political."

Before Monsieur Arseneault departed for greener pastures he did reply to a tweet from me:

In his tweet Donald Areneault ignored the very large differences in the numbers of people  affected in Woodstock, Fredericton, Moncton and Saint John. In his mind it was OK for the large numbers of persons affected in the south to suffer because the far smaller population in the north would suffer from being sent south.  He also ignores the fact that autism expertise has been developing in Fredericton and received international recognition. Both in terms of central location and autism expertise it would make much more sense to develop the adult autism care facility for the most severely affected in Fredericton with smaller group homes around the province including Campbellton. Staff in the group homes could be sent to Fredericton for training and there would be far more adult autistic persons living humane lives with professional oversight near their families. He also lacked the honesty to admit that the decision to dump severely autistic adults in Campbellton on our Northern Border was done for political reasons ... to benefit him.

I did seek the assistance of my MLA, and my son's MLA Stephen Horsman, to discuss developing an adult autism care facility in Fredericton, building on the autism expertise and the central location of Fredericton,  Unfortunately for my son Conor Mr Horsman followed the party line in much the same wording later tweeted by his colleague Donald Arseneault and dismissed my request condescendingly.  

Health care is an important issue in New Brunswick as for most of Canada.  Before die hard Liberals vote for a second consecutive term they may want to consider the implications for their families of a government making health decisions based on political considerations.

New Brunswick Must Start NOW to Tackle Early Death in Autism!

My son Conor is now 21. He is a great joy in my life. Like many with autism and intellectual disabilities he also suffers from epilepsy which made itself known in adolescence. He is one of a significant number of persons on the Autism Spectrum whose life expectancy is reduced on average by 30 years. In NB we are afraid to discuss such harsh realities. 

New Brunswick Must  Start NOW to Tackle Early Death in Autism!

Here in New Brunswick government, media and the general population are largely unaware of the early death crisis marked by sharply reduced life spans of persons with autism disorders. Persons with autism spectrum disorders die early, shockingly early.  Persons with autism and intelligence in the average range die as much as 9 years earlier than persons in the general population.   Roughly half of the Autism population who also have Intellectual Disabilities die on average 30 years earlier than persons in the general population. These brutal realities have been confirmed by a Swedish study reported for public awareness by the UK Autism Reserch Charity Autistica. The Autistica Report Personal Tragedies, Public Crisis: The urgent need for a nationalresponse to early death in autism can be found on its web site. We Must Start Now to Tackle Eearly Death in Autism is a comment on that report published on the Huffington Post by the UK research director Dr. James Cusack himself a persons with autism.

Here in NB government responded well to autism parents advocating for evidence based early intervention and other services to age 16. Tragically NB governments have shown no real interest in addressing the serious needs of autistic adults whether those with average intelligence suffering from suicide inducing depression or the roughly 50% who have intellectual disabilities many of whom suffer from life shortening epilepsy a condition worsened by the cognitive and communication deficits of those with autism and intellectual disability.

NB government, media, and even autism community groups throw around clichés and on a positive note engage autistic children and young people in social activities to some extent but they do not even talk about the brutal realities of early death facing so many with autism spectrum disorders. New Brunswick has seen autistic adults die early deaths from epilepsy seizures. Some with autism suffer from serious depression.  No one is talking about these harsh realities in the context of autism disorders where the rates of early deaths are so high compared to persons in the general population.

Dr. James Cusack, as stated, is himself a person with autism and he is the Research Director of Autistica.  In hiis recently  published blog post on the Huffington Post called “We Must Tackle Early Death in Autism  " he stated:

“When I was 12, I was told I was autistic. No-one told me that could mean I was more than twice as likely to die early.

The reality is that autistic people are dying far too young. A large study from Sweden has found that, on average, autistic people die 16 years younger than the general population. Autistic people are at increased risk of death from almost every possible cause.

For those with autism and intellectual disability, who form the majority of people with autism, the average age of death is a staggering 30 years lower than the general population. The leading cause of death is epilepsy, which is harder to identify in autism than the general population, and which has an unusual developmental trajectory - not generally developing until adolescence. Meanwhile, autistic adults with intelligence in the normal range are almost ten times more likely to kill themselves. To me, this demonstrates the challenges which many autistic adults face in their daily life and our failure as a society to meet the needs of the autistic population.

These statistics are sobering, but behind them lie real people, real families, and real losses to wider society. I meet far too many parents who have had told me about losing their sons or daughters. I know far too many autistic people who have struggled with mental health problems and experienced thoughts of suicide.

It is not enough to shake our heads and comment on how shocking these results are. As a humane society and nation, we must act on this. I work for Autistica, a charity which funds research into autism. We have just launched a report "Personal tragedies, public crisis". In this report, we have committed ourselves to doing our part - we are going to commit to raising £10m to solve this issue. In particular, we hope to fund research which addresses epilepsy, suicide and poorer physical health seen in autism.

I am driven by the desire to ensure that every autistic person has the same opportunity to live a long, happy life like the rest of the population, but I am also not deluded. Autistica cannot and will not be able to do this on our own. We need society's support and action from government to fund research which can find ways to tackle the leading causes of death in autism. This issue is also bigger than research. Our health services, social care and other must reform to build a world which not only acknowledges autism, but which is truly autism-friendly, allowing everyone with autism to participate.

Early death in autism must be tackled now. Please join us and give everybody with autism the chance of a long, happy, healthy life.”

UNB Fredericton's Internationally Recognized Autism Expertise

UNB Fredericton, and NB, have enjoyed international recognition for its developing autism intervention expertise since the mid 2000's, The early intervention training program UNB developed was used to implement a provincial early intervention program that was soon recognized by the Association for Science in Autism Treatement in the US. UNB Fredericton has also achieved recognition in Europe.

Recently UNB-CEL Fredericton in partnership with Autism Connections Fredericton brought Princeton adult autism expert Dr. Greg MacDuff to Fredericton to speak for 2 days about adult autism care and treatment models he developed, evidence based autism treatment and adult autism principles generally. I was pleasantly surprised to learn that the PNB had also helped bring Dr. MacDuff to Fredericton and to see Families and Children Minister Stephen Horsman as the introductory speaker. In addition there were a number of senior NB government employees in attendance at the event. 

During the 2 day session I also learned that UNB was now involved in the provision of autism intervention programming in France. I checked on the UNB-CEL web site and found the following information ... another testament to the internationally recognized autism expertise which UNB Fredericton is continuing to develop:

April 5, 2016

UNB partners with Université Blaise Pascale to license the autism intervention-programming curriculum

UNB has partnered with Université Blaise Pascale to license the autism intervention-programming curriculum, which will be re-designed for target employment in France. All developed curriculum will be co-shared for future opportunities of both institutions.

“We are very proud of the reputation UNB has and continues to build and expand upon on the autism and behaviour intervention front,” said Trisha Fournier-Hoyt, director, Autism and ABA training at UNB College of Extended Learning (CEL). “We continue to refresh and repurpose our programming to meet the needs of training partners across the world.”

Université Blaise Pascale has been charged with the development of a countrywide education strategy to provide an online autism intervention program for existing licensed psychology professionals in France. 

UNB has also achieved licensing recognition as a post secondary institution in France allowing UNB to provide education to students sponsored directly. This license was fostered through the partnership between UNB-CEL, l’Association Actions pour l’Autisme Aspergers France and the UNB-IRO.

Adult Autism Care: It Is Time for NBers to Stop Hiding from Reality and Develop An Appropriate Autism Centre and Network - Part I

"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." 

-NB Autism Expert Paul McDonnell, September, 2010 CBC Interview, (highlighting added for emphasis - HLD)

There is often a split between  higher functioning persons with autism and persons who require life long care, persons who can not advocate on their own behalf.   and persons who require life long care, persons who can not advocate on their own behalf.  I am the parent of a 21 year old with autism, "profound developmental delay"/intellectual disability. As a young child he was interviewed by someone from one of the community based organizations in NB but they decided they would not work with him ... as was their legal right. The reality though is that some with more severe characteristics require intense, expert care not available generally.  My son is one of those. ... As I age and eventually die he will require a very intense and expert level of care not easily found in the community. 

NB Needs an autism care and treatment network that would accommodate persons with autism in need of different levels of care with homes around the province near families and a centre in Fredericton, near our developing autism expertise, for those with the most severe care requirements. Well meaning people in NB have resisted exactly this type of network while looking the other way when adults with autism are sent out of the province to Spurwink Maine or to our Northern Bordhe split generally on adult care issues exists between higher functioning persons with autism and severely autistic adults who are in Campbellton at the Restigouche Psychiatric Hospital as far as possible from by far the greatest number of NB families.   The Community groups and persons who oppose an autism centre and network modeled on integrated, educational, professionally trained principles have no problem sending our most severely autistic individuals  to the hospital type institution they do despise in Campbellton NB as far away as possible from the vast majority of families who have provided them with care and who love them.

It is time for NBers to stop cowering in fear and yelling "no institutions, no institutions" whenever we discuss the long term care needs of all adult persons with autism.  It is time to take an honest look at the real needs of NBers with adults and build a network and centre integrated into communities, with a focus on education, positive living experiences and individualized curricula with properly trained professionals and staff as close to families as possible around the province of NB.

Mother of Adult Autistic Son files Complaint with New Brunswick's Ombudsman

Cheryl LeBlanc and her adult autistic son Ryan, Global News; 

New Brunswick mother of autistic son files complaint with province’s ombudsman:  

Global News senior correspondent Shelley Steeves has reported the story of Cheryl LeBlanc who has filed a complaint with NB's Ombudsman on behalf of her adult son with autism as reported in the article and accompany video on the Global website at New Brunswick mother of autistic son files complaint with province’s ombudsman:  

"A Shediac, N.B. mother frustrated over the lack of support for her son with autism has filed a formal complaint with the province’s ombudsman and the Premier’s Office.

Cheryl LeBlanc said people with disabilities in New Brunswick who want to get an education and work are being forced to live in poverty.

“Why do they make it so hard for our children to succeed in life? Our children with special needs will forever live in poverty,” she said. 

...

Exhausted and angry, she’s filed a formal complaint with the Premier’s Office and with the province’s ombudsman asking that people with special needs no longer fall under the umbrella of the Department of Social Development."

HLD: In addition to the above excerpts from the Global News report the following Facebook comments are taken from Cheryl LeBlanc's FB site and are posted here without any editing:

Cheryl LeBlanc

9 hrs · 

Hi my friends, since I sent an email to the Minister of Social Development as well to Hon Brian Gallant, and still no replies or acknowledgement, can you please continue to share both (article and my complaints), even if you shared it, please re-share. I no longer want a listening ear, I want action and change of policies. I had so many parents sending me messages, that they go through the same thing. This needs to go to the right person and make changes. I will share my status everyday, until I get a reply and telling me they want to meet with me and discuss a plan of action.

Cheryl LeBlanc

July 11 at 7:54pm · Moncton, NB · 

I know it's long ...Since Global News could only cover 2 minutes of my concerns, they could not cover all of it. This is part of what I sent to the Ombudsman, please share share share.

Parents with special needs children are exhausted and drained, not because of the disabilities of their children but because the system is so exhausting to deal with!! You cannot get an answer to any questions, we get transferred over and over to one person to another!! Constantly!!! Its beyond exhausting ...its crushing! how can an adult with special needs ever be independent when those of us deemed to be "normal" spend hours and days shuffling through the program called Social Development. For 18 years i have been dealing with them and trying to figure out what services are available, what is required , what new form i need to fill, but i continue to be lost and be lead by a system that seems to make it their mandate to complicate everything!!

We have special need children and it’s as if we are punished for this. We constantly hit walls, doors closes; the right hand does not talk to the left. One person tell us one thing, the other one tells us another thing.

The Adult Transition for my son has been the hardest I have ever had to deal with, they fall into the cracks of society and of the social development program and no one seens to care. There is nothing for them after school. What do we do? No one gives us information, we have to figure it out ourselves.

What option do our kids have after school : the Social Development Cheques or work at a workshop for $10.00 a WEEK!! Those ate the options! They are diagnosed Special Need, Adults with intellectual disabilities are treated the exact esame as a person applying for Social Assistance. They do not take into account that they are limited, either mentally or physically. Their requirements are so overwhelming that they will never be able to comply with all their rules and regulations (need to send their pay stub on a monthly basis, if they forget, their cheques are cut off, their monthly stmts of information are impossible to make sense of, calls are not returned, forms are in the dozens)Can you imagine them trying to become independent how difficult it would be? And to make them feel even more valuable, all cheques cashed at the bank requires that they

show them their little WHITE CARD. Don’t you think they were humiliated enough all their lives in school, friends, ect. They keep telling us they are included, but they are not. At LJR, they still have that Special Table for them. Its 2017!! Why are we still allowing this? Don’t get me wrong, Ryan loved LJR, but for the four years he was there, not once did he eat at LJR during Lunch, because he felt he had to sit at the designated table. Its heart breaking.

I open so many doors for my son, but it came with a price, my other son did not get all the attention that he should have had. Thank god I had a great job, so I could submit my leave and attended numerous meetings for Ryan.
Did you know that I am dealing with numerous people right now, do you think that Ryan could handle this? Or if even something happens to me, what will happen? I deal with a Case Worker, A social Worker, a person from NBACL, a person from College, his mentor, his employer, support worker, Home Access, than I have to put myself a reminder to send his Pay Stub every month. Oh and they do not like to receive by email, they rather fax or drop it off in person!! Then I have to worry about his prescription, and entertaining him And that is not counting his doctor’s appointment, his hearing aids, medications, etc. Us as parents will never have the independence life like other parents with children. If we leave for a weekend, or even an evening, we need to worry. Oh yes, I have relief weekend, but guess what, my mom or his brother cannot sign, but they rather we ask pure stranger or someone that Ryan is not comfortable with to entertain them. But they do not take into account, Ryan’s stability and comfort zone. It’s because there was abuse in the system and we are again punished by this. But they do not realize we have limited families.

Ryan is now in College, it took three years, and it took meetings, after meetings, forms after forms, and finally all was accepted. He won $4000.00 in bursaries, but he could not enjoy it, because HE IS ON Social Assistance and every cent was taken out! Ryan = Poverty.

They are special needs adults, can we not have a simpler system? Can we not strive to make their lives better and not a never ending battle if bureaucracy??

And then, when I can no longer take care of Ryan, what will happen? I have to place him in a seniors home at the age of 35??
These people they did not ask to be mentally challenged or physically challenged, but are constantly penalized and will live forever in poverty and in the grasp of a broken system.

I constantly talk to Parents who deal with this every day, and they are just drained and exhausted.

I pray to God that I will be healthy for the longest time.

I could go on and on and on.. I already talked to Cathy Rogers, she attended a forum, but they do not realize how corrupted Social Development is or the system. And they should not blame it was the Conservation, or Liberal, or it was limited budget. It’s called POLICY, EMPATHY, SYMPATHY, ORGANIZATION and going the extra mile for these challenged adults. Something needs to change. They need to make it easier for Adult with special Need, and the aging parents that still need to be on top of everything. I have been dealing with so many things ( all because of social development)and I have been crying for the last month. For the people that know me knows I do not cry for nothing, so this means I am at the end of my rope.

Cheryl and Ryan xox

Adult Autism Progress In New Brunswick? STALLED for the Last 2 Years

Two years ago I was mildly optimistic about the possibility of real adult autism progress in New Brunswick as expressed in my comments in the July 15 FANB article "A Positive Adult Autism Meeting with then Social Development Minister Cathy Rogers" which follows.  As stated therein I met with another parent advocate Cynthia Bartlett and Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell and reviewed with Minister Rogers and some advisers and discussed the need for an adult autism network as articulated by Paul McDonnell, with a centre based in Fredericton where out autism expertise has been developing with autism specific group homes with properly trained staff in locations in communities around the province. 

Unfortunately Minister Rogers was moved by the Gallant Government which then brought in Stephen Horsman to head the newly, ironically named Department of Families and Children.  Since then there has been NO progress and it seems clear that the Gallant government will continue to send adults with severe autism to the Psychiatric Hospital in Campbellton, a shrinking community on our Northern border, far, far from the bulk of NBs population and from families who love and provide support for their autistic adult loved ones at no cost to the NB government. 

THURSDAY, JULY 30, 2015

A Positive Adult Autism Meeting with Social Development Minister Cathy Rogers

Minister of Social Development Cathy Rogers

Photo Source: NB Liberal Site 

July 14, 2015 Meeting with Social Development Minister Cathy Rogers
at 551 King Street, Photo by Harold L Doherty

On July 14, together with autism advocate Cynthia Bartlett and Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell I met with Social Development Minister Cathy Rogers and 3 of her advisers.  The meeting had been requested by Minister Rogers when it became clear in the Legislature gallery that I, and presumably some others in the gallery, were unhappy with the government’s response to opposition MLA Ernie Steeves motion on adult autism care.  Bathurst MLA Brian Kenny, with whom I had spoken during our small demonstration outside the Legislature earlier that day was talking to Minister Rogers and pointing up at me.  A short time later Mr. Kenny came up to the visitors’ gallery and asked me to come out to the hall where Minister Rogers asked me if we could schedule a meeting to which I agreed.  I was thankful for the opportunity to address the adult autism care issues which have never been addressed in any coherent, systematic and well informed manner.  I was very pleased that Cynthia and Paul were available to attend at the meeting and share their experience and expertise.

The principle around which our discussion took place was the same principle on which those of us who advocated as parents for early autism intervention in NB  relied on in our successful advocacy efforts – the need for an evidence based approach. Fortunately the Minister and her advisers seemed to be in agreement with this principle at outset and needed no convincing.  That may not sound like much today but it was not always an easy sell in our early advocacy efforts in a province where clichés about community and inclusion are often sold as solutions to the most challenging disorders and deficits.

The evidence with respect to adult autism care in NB is clear: we do not have a plan to address in a humane, professional, reliant manner the needs of autistic adults, particularly those at the severe end of the spectrum, in New Brunswick.  We have housed New Brunswick ‘s autistic adults in a variety of hospital settings from general hospital wards to the Restigouche  Regional Psychiatric Hospital in Campbellton far from the bulk of NB’s population, far from most families.  We have housed a NB autistic youth on the grounds of the Miramichi Correctional Facility only because no other location had the resources to provide proper care and safety.  That youth and at least one young man were sent to the Spurwink facility in Maine for several years at a cost to the Province of approximately $300,000 per year per person.

What we discussed was the proposal developed largely by Paul McDonnell with input from parent advocates including Dawn Bowie, Lila Barry, Cynthia Bartlett and me and enunciated in principle in his 2010 CBC internet interview and analysis:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)

"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 resident 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."

There was also discussion of some of the serious issues that often accompany autism including intellectual disability, seizures, self injury, wandering and the need for surveillance of some autistic adults to ensure their safety.

The Minister did not make any clear commitments, at least as far as I understood our discussion.  She did say that other departments would have to included in the discussion, a point on which we agreed.

My assessment is that the meeting was positive and that the Minister sees autism care as a need that really has to be addressed in New Brunswick.

 It is up to parents though, as it always has been, to keep these needs in the forefront if we want decent places for our children to live as adult; places where they can live  happy lives, according to their level of need,  with proper health care, education and security.

Autism Advocacy New Brunswick

June 19 2017. Harold L Doherty: 

The need for serious autism advocacy in NB is particularly critical at the level of adult autism residential care and treatment. Many of us advocated for the early autism intervention services in place today, for autism trained Education Aides and for reversal of the decision to close the Stan Cassidy Autism team. 

Now we need EVERYONE with a serious interest in adult autism to come together and advocate for an adult autism residential care and treatment network with a center in Fredericton, the home of NB's autism expertise, with autism group homes around the province as described by Paul McDonnell in his 2010 CBC comments pinned to this FB page. I have posted an email AutismAdvocacyNB@gmail.com and plan to incorporate AANB as a non profit and begin action in Mid July. You can receive updates here. I will also set up an Autism Advocacy NB group site on gmail for advocacy discussions as well. 

Feel free to email me at AutismAdvocacyNB@gmail.com

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. 

Autistic Adults Die Young, 16-30 Years Before Others, But Gallant Government Continues to Ignore the Need for an Adult Autism Center/Network

My 21 year old son Conor is a joy in the lives of his  family , friends and those who have met him in NB schools, Fredericton stores and generally. Conor is severely autistic with intellectual disability and epilepsy (frequent tonic clonic seizures).  This places him squarely in the midst of the subgroup on the Autism Spectrum Disorder whose life expectancy is shorter by 30 years than the general population. 

The NB government has ignored those realities for decades and has refused, since 2010, expert advice to build a centralized expert autism center AND network which would address increase the chance for autistic adults to live longer, happier lives.

People with autism tend to die decades younger than the rest of the population, and more needs doing to understand the problem’s causes and to find potential solutions, says a new report from the charity Autistica.

Autistica’s report,1 drawing on recently published research in Sweden, said that people with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.

Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties.

(Bold Highlighting Added - HLD)

People with autism die 16 years earlier on average, says charity BMJ 2016;352:i1615

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."  

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Paul McDonnell Ph.D. is NB's foremost autism expert.  His recommendations via the CBC in 2010 were repeated during a meeting with Minister of Family and Community Services/Social Development Cathy Rogers not long after the Gallant government dame to power.  Dr. McDonnell enlarged on his media comments with a written presentation and was accompanied by parent advocates, including me.  Minister Rogers brought some key advisers with her and I was personally optimistic.  Unfortunately Minister Rogers was moved in a cabinet shuffle and Minister Horsman transferred from Justice.  Minister Horsman has shown no inclination to take adult autism issues seriously and is content with exiling NB autistic adults to the Restigouche Regional Psychiatric Hospital on our northern border far from most families and far from the autism expertise developed in Fredericton a central location closer to most families.

As stated above Social Development Minister Horsman is happy with autistic adults being sent to the Restigouche Hospital on NB's Northern Border far from most families in southern and central NB.  Campbellton itself is a small city with a shrinking population.   When prominent Liberal Bernard Richard completed his mental health review he expressed thinly veiled anger at the current Gallant Liberal government for its decision to place a mental health center in the Restigouche Hospital in Campbellton. He was joined in criticizing that decision by fellow prominent Liberal and former cabinet minister Michael Murphy QC:  

Bernard Richard slams choice of location for youth facility

Putting mental health unit in Campbellton is 'worst' decision former youth advocate has seen in a while

By Matthew Bingley, CBC News Posted: May 11, 2015 7:50 AM AT Last Updated: May 11, 2015 12:26 PM AT

"In January, Richard and a colleague canvassed mental health professionals to see what they wanted for a new facility.They made recommendations to the government to build the facility in Moncton where access to two hospitals, in both languages would be available.They also argued that an urban location would have more luck producing specialized services and luring doctors.

Michael Murphy also chides choice

Former Liberal health minister Michael Murphy took to Twitter Monday to join those panning the choice of Campbellton. After Richard went public with his concerns about the choice, Murphy joined in the chorus of opposition.A mental health treatment centre for youth has been discussed in New Brunswick for more than a decade and in a rare Saturday news conference, the province announced the project would proceed adjacent to the Campbellton Regional Hospital.

"Bernard Richard...appalled by location of new centre.  I agree," tweeted Murphy.

Murphy blamed the decision on Liberal party politics and pointed to his former cabinet colleague Donald Arseneault as the likely source of the decision. Arseneault is the current minister of energy and mines and represents the riding of Campbellton-Dalhousie in the legislature. Arseneault made the actual announcement in Campbellton on Saturday, rather than Health Minister Victor Boudreau.

"Power of Donald Arseneault is evident by this," tweeted Murphy. "The location away from family for most young patients may only aggravate the condition.  But this government is intensely political."

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Autistic adults have drastically shortened life expectancy - 16 to 30 years shorter depending on their location on the autism spectrum.  Those expectations and the quality of their lives could be expanded dramatically if an autism center based in Fredericton near the autism expertise developed over the last 15-20 years could be built as a center for an autism network of group homes which together could provide the long term residential care and treatment needed for persons with moderate to severe autism disorders and related disorders.   Unfortunately as prominent Liberals Bernard Richard and Mike Murphy have pointed out the current Gallant government is motivated by politics not by concerns for people like NB's adult autistic population with their shortened life expectancy.

I have to continue to hope, and to advocate, for a different approach to adult autism care in NB. My son has a shortened life expectancy because of his condition and because our government ignores his reality a reality shared by many NBers with autism disorders. It doesn't have to be this way. Professor McDonnell has the professional expertise to point to a better future and he has done so.  

I also rely on my  expertise as a dedicated father who has seen my son, as his mother and I raised him,  struggle with his serious challenges: severe autism, intellectual disability, seizures, self injurious behaviours.  I have also  though seen the joy he has experienced in life; a joy which he shares with all who know him.  I post pictures of my wonderful son again following this commentary and hope that before too long NB governments start to address the challenges my son will face when I can no longer, through age or death, provide the care he needs; the care that will not permit his life, and his joy, to be drastically shortened. I know my son can have a happy life, a healthy life. I have helped him and experienced his successes and joys.  I will continue to do so and will continue to hope for a responsible government to take charge and develop the adult autism center and network that has been needed for so long.