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.

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.