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.
Minister of Social Development Cathy
Rogers
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.
