October - Autism Awareness Month in NB - Adult Autism Care is Long Overdue

In Canada October is Autism Awareness Month

New Brunswick Is An Internationally  Recognized 
Early Autism Treatment Leader: 
BUT Has Nothing For Adults with Severe Autism

October 18, 2017

Premier Brian Gallant

Families & Children Minister Stephen Horsman

Health Minister Benoît Bourque

Dear Premier Gallant and Ministers Horsman and Bourque:

Re: Autism Awareness Month: Adult Autism Treatment and Care

October is Autism Awareness Month in Canada although that is sometimes lost in the Blue Light  celebrations of April n the United States.

I am sure you are all aware that New Brunswick has an early autism intervention program for which we can all be proud.  The NB program resulted from determined parent autism advocacy. It was developed at the UNB-CEL in Fredericton which established a program in both official languages that has been used in Saskatchewan and more recently in France. Conservative and Liberal governments contributed to the implementation and delivery of the early autism services. The Association for Science in Autism Treatment recognized the program as a model for consideration by other provinces and some US states. 

Parent autism advocacy also resulted in the training of approximately 500+ teacher aides/ education aides and some accommodation of autistic students in learning environments appropriate for their severe autism challenges.  Parent autism advocacy also resulted in the reversal of the decision to close the Stan Cassidy Centre Autism Team which provides consultation up to age 16.    

Nothing meaningful has been done though to address the very serious issues facing adults with autism in NB.  …. NOTHING.   In 2010 Professor Emeritus (Psychology) Paul McDonnell articulated the need for an adult autism network comprised of autism specific group homes located in communities around the province and a centre to provide the training and oversight for staff in the group homes.  A further extremely important function would be to provide permanent residential care, treatment and continuing education in a modern setting for those with severe autism challenges.  In a meeting two years ago then Minister of Social Development Rogers in the presence of Department advisers appeared to give careful consideration to a detailed proposal presented by Paul McDonnell and parent autism advocates. 

Since the meeting with Minister Rogers nothing has been done to advance the development proposed.  I ask you again, and will keep asking you, to stop ignoring the needs of adults with autism who can not be provided for in the community facilities that now exist.

I have been a parent autism advocate for more than 18 years plus.  I was pleased with the early autism intervention program developed for autistic children even though the program arrived too late for my severely autistic now 21 year old son to be eligible. 

If your government does not intend to work on and develop the adult autism network please advise.

Sincerely,

Harold L Doherty

Conor’s Dad

Queen Elizabeth II Diamond Jubilee Medal Recipient (Autism Advocacy)

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.

NB Adult Autism Care - Autism Spectrum Village Proposal

UPDATE:  Dr. Gregory MacDuff 

 Adult Life With Autism Spectrum Disorder

UNB Fredericton Wu Centre

Dr. Greg MacDuff presentation on Adult Life With Autism took place yesterday and it was  excellent.  This parent learned a lot yesterday including many points I plan to use in caring for my adult son with severe autism disorder.  

I know from discussion that many other parents and professionals were also very happy with the days events and the excellent presentation by Dr. MacDuff.  I did note there were a handful of people who promote non evidence based approaches to educating and caring for autistic children and adults and I hope they learned enough to open their minds.  

The excellent presentation by Dr MacDuff continues today with 3 question sessions organized around government, professional service providers and parents.  

The Adult Life With Autism Spectrum Disorder is an excellent example of why UNB-CEL and Fredericton itself have so much to offer in the establishment of an adult autism centre to provide training and oversight of a network of autism group homes around the Province of New Brunswick.  

NB achieved international recognition when it established the early autism intervention program. It is time, it is past time to take that accomplishment to the adult autism level.

UNB Psychology Professor Emeritus Paul McDonnell, clinical psychologist, and mentor to many autism parents in NB is the intellect that triggered the creation of the internationally recognized early autism program in NB. 
    

In a 2010 CBC interview McDonnell drew the attention of the NB public to the need for autism specific adult services.  McDonnell proposed an autism network with group homes in communities around the province organized around an autism centre:

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)

McDonnell repeated the principles of his 2010 CBC interview and elaborated on them in The Proposal for An Autism Spectrum Village, May 14, 2015.  The proposal again reiterated the need for an enhance group home autism network with a centre in Fredericton near the autism expertise that has been developing here:

It is therefore imperative that New Brunswick establishes an Autism Treatment and Residential Centre. The centre should be situated in Fredericton so that it is physically close to regional autism expertise at the UNB-CEL autism program and the Stan Cassidy Centre. The Centre would provide treatment for all autistic adults who are too old for treatment at the Stan Cassidy program and permanent residential care for the most severely autistic some of whom have been sent to the Spurwink Facility in the State of Maine and to the Restigouche Regional Psychiatric Hospital in Campbellton. Autism specific group homes around the province are required with autism trained staff and oversight from the Centre.

 In this sense, the model proposed could be characterized as a “satellite” model in which the centre in Fredericton would be linked directly to a number of satellite homes around the province. Medical issues commonly associated with autism disorders including epilepsy and depression would also be treated in the context of persons suffering from autism and the extra challenges it presents to treating those common co-morbid conditions.

 McDonnell, autism parent advocate Cynthia Bartlett and I all met July 14, 2015 in a meeting with then Social Development Minister Cathy Rogers.  Minister Rogers seemed genuinely interested in the Autism Spectrum proposal and was assisted by several advisers. 

 The optimism faded though when Minister Rogers was replaced by Minister Stephen Horsman who is also the MLA in my home riding of Fredericton North. I requested a meeting with my MLA but he seemed disinterested in any autism proposal and made it clear that he was OK with sending severely autistic adults to the Registigouce Regional Psychiatic in the City of Campbellton a city which is literally on the Northern NB border with Quebec.  In Minister Horsman's "reasoning" (and that of Restigouche MLA Don Arseneault) it was fine to send severely autistic adults to Campbellton far from the large bulk of NB families because some from the North have had to travel south for services.  This mentality was identified by former Liberal Health Minister Mike Murphy in the context of the youth mental health fiasco which was located in Campellton as being a political decision by MLA Donald Arseneault who weilded considerable influence in the Gallant Liberal government. Jobs in Campbellton trumps health and well being of autistic adults including my son Conor who like me is represented by Minister Horsman as our Fredericton North MLA.

Tomorrow will see a full day presentation on adult autism by a distinguished expert from Princeton Dr. Gregory MacDuff. 

Hopefully exposure to intelligent and principled expert information will encourage the Liberal government to establish a network of autism specific group homes with a centre in Fredericton, one which would be both centrally located, reducing to the maximum extent possible travel distance for families and be in close proximity to Fredericton's autism expertise.  

Hopefully. 

 I am not holding my breath but I have to continue to hold out hope for my son Conor and his future well being.

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.