As an Autism Society New
Brunswick representative I attended a meeting held at the Restigouche Regional
Hospital Centre a few years ago to participate in a meeting to review the
operations of the RRHC and to vote on its future, specifically whether to continue
to operate or to close. I voted to continue to operate the RRHC. There were
autistic adults who had been living there for many years. No alternative
in New Brunswick then existed for these adults with severe autism challenges.
The vote was conducted and reluctantly agreed to by me, and all other
stakeholders present, because no alternative accommodations existed in NB for
the residents of the facility. Today no alternative has been
developed despite representations made to government over and over and over
again.
As the title to the above comment I
made on this blog on January 25, 2012 indicates money is not necessarily an
obstacle to construction of a modern, humane adult autism care network.
Money despite challenging economic times has been available for projects
such as the Civic Centre for residents of Premier Alward's riding. Money has
also been spent on sending autistic youth and adults out of New Brunswick to
receive the care we could provide in New Brunswick if outdated, non evidence
based models of community and inclusion did not dominate the thinking of our
government leaders, educators and service providers. As former Conservative
cabinet minister Tony Huntjens indicates in his comment on the above post
between $300,000-$600,000 annually has been spent on just 1 or 2 persons living
at Spurwink, money that could be used to build a network of adult autism
facilities here in NB:
I totally agree with you Harold. When I was
minister of FCS we had to use facilities in the State of Maine at an annual
cost of $300,000 per person. I had planned on pursuing the initiative you speak
of using the State of Maine model...this would keep the autistic person closer
to home in familiar surroundings, it would create employment so that the
$600,000 now spent in Maine could be used to pay for these services at home. As
you know, my efforts were derailed and I had to resign as minister. These
financial facts I speak of need to be brought to the attention of the present
government...perhaps they will see the light.
Keep up the fight and I personally wish you the
very best of luck.
Tony Huntjens, January 2012
Tony Huntjens was a cabinet minister
during the Lord government years and showed himself to be a true friend
of New Brunswick's autism community as he remains to this day. Although
not a member of the legislature, or the current government he has
continued to be a supporter of children and adults with autism. I attended a
meeting with a minister of the current administration on adult care over a year
ago in which Mr. Huntjen advocated forcefully for autistic adults in New
Brunswick. His efforts, and those of everyone who attended the meeting were not
met with any results by this current government which believes that all needs
of autistic children and adults can be addressed by feel good cliches about
community and inclusion. His comments 13 months ago on this site are an
accurate reflection of what took place almost a decade ago. The adult
autism care he described then remains largely unchanged today.
Things were so bad then that an
autistic boy was housed on the grounds of a youth correctional centre, a jail, before being sent out of the
country to the Spurwink facility in Maine where the $600,000.00 annually that
Mr. Huntjens spoke of was being spent. Matters have not improved under
the current Alward-NBACL government. Things were bad then
and ... they are not one bit better today.
Social policies including early
intervention, education and adult residential care policies are now set largely
by the New Brunswick Association for Community Living which
has extremely close ties to the current government. Despite the wonderful
sounding name NBACL turns its head the other way when autistic children are
excluded from New Brunswick schools and autistic adults are sent to live on
general and psychiatric hospital wards ... if they have anywhere to live at
all.
The Autism Society New Brunswick made
representations annually to the Lord, Graham, and the Alward government,
to develop a modern, humane autism residential care network as described
by autism expert Paul McDonnell a
Psychology Professor Emeritus and practicing clinical psychologist who was
instrumental in the autism progress New Brunswick made in the pre-Alward era.
Unfortunately the Alward government
has not seen the light as Mr. Huntjens had hoped. New Brunswick adults
with autism and their families have no reasonable basis on which to believe
that their needs will be met, or that their voices will even be heard (1a,b),
during the reign of the current administration.
For New Brunswick youth and adults
with severe autism challenges inclusion and community living are simply cliches
uttered incessantly by those who pretend to care about their well being.
-------------------------------------------------------------------------------------------
(1) (a)
January 4 2012
Dear Honourable
Premier, Honourable Ministers
and Respected
Recipients
Re: Adult
Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need
I
am the father of a 16 year old son with severe Autistic Disorder and
"profound developmental" delays. He is now 6'1" with the strong,
solid physique his father once had in younger days. At some point in the
future I will be too frail to provide the care he requires and ultimately will
of course no longer be available at all to help him. I began my involvement in
autism advocacy in New Brunswick approximately 13 years ago. Along with
other determined parents I fought hard, very hard, for early evidence based
intervention for autistic preschoolers and for the means to deliver those
interventions. I advocated strenuously for autism specific trained education
assistants, teachers and resource teachers. Some success has been enjoyed
because of the efforts of parents of autism in the area of preschool and school
services. New Brunswick has even been cited as a model from which American
authorities could learn by the Association for Science in Autism Treatment. The
same can not be said, at all, when it comes to adult residential care and
treatment
I
also advocated for adjustments to the total inclusion education model in
our schools. My son's self inflicted bite marks on his hands and wrists
declined and disappeared entirely once removed from the mainstream classroom
where he was overstimulated, overwhelmed, frustrated and learning nothing
because of his serious autism deficits. I have been a determined opponent of
the excessive dominance in our schools and facilities of rigid, ideologically
based inclusion and community models. This mindset discriminates against
severely autistic persons by failing to accommodate their real needs. Our
children have, at times, been sacrifices to the vanity of a community movement
which can not adjust to differing needs, experiences and expertise. I
participated in regular disability committee meetings held by the Department of
Education until they were disbanded, the MacKay review and the Ministerial
Committe on Inclusive Education. Believe me or not but many teachers and
teacher representatives have told me in confidence that they shared my aversion
to the rigid inclusion model which has caused considerable suffering to some
children and has disrupted the education of others unnecessarily. My son has
been accommodated because of my advocacy and because educators who dealt
directly with my son were conscientious, could see what he needed and acted in
good faith to help him. I know that not all severely autistic children have
been as fortunate.
Nowhere
has the insistence on an inflexible and non evidence based inclusion model hurt
autistic children and adults more though than in the area of residential
care and treatment as they move from childhood to adolescence and ultimately
adulthood. What awaits is a model which includes a belief in
"community" backed up by group homes with untrained, underpaid
staffers at one end of a spectrum of care. At the other end of that
spectrum is the regional psychiatric care hospital in Campbellton. In between
the two ends is a huge gap. What is need is at least one centrally located
permanent residential care and treatment facility for severely autistic adults.
Such a facility could be modernized and based on existing models in the
world. It could include the professional assistance needed to provide care for
severely autistic adults in a setting designed to provide them with a decent
life, with continuing education and recreation opportunities. The
facility should be based in Fredericton, not because I live here but because
Fredericton is where our evidence based autism interventions and facilities
began and grew. It is centrally located and it has a naturalistic
environment with many woodlands, trails, parks and outdoor areas together with
indoor recreational and entertainment facilities.
I
realize the current economic realities in NB, in Canada and the world work
against any consideration of the type of facility that is needed. But economic
realities always weigh in and have done so over the last decade that I have
been involved with trying to advocate for a reality based, evidence based
residential facility for autistic adults in need of a permanent home when their
parents age and pass on. Ever present too, and just as big an obstacle,
is the belief that citing "community" cliches will actually help
those who are most in need of help.
I
have visited Centracare years ago with the father of a adult autistic son who
resided there at the time. He told me of seeing his son dressed in a hospital
"johnny shirt" in a room with a cement room and a liquid substance on
the floor. I did not know whether to believe him or not until we arrived
and again found him in the same room in the same condition. At least one
autistic youth and one adult have been sent to a facility in Maine at considerable
financial expense and considerable emotional stress for families living on the
other side of an international border. I have had parents email me to
tell me of their young adult autistic children hitting their head and having to
wear self protective head gear at home while parents struggled to provide care.
I was told of an autistic adult living on a general hospital ward for a time in
Saint John. I am aware, as are we all, of the autistic youth who lived for a
time on the grounds of the Miramichi youth correctional facility before being
sent to the a Spurwink facility in Maine.
In
early intervention and in school services both Liberal and Conservative
governments have been of some assistance, have helped to provide needed,
evidence based services to some extent. I ask that the same spirit be applied
to developing a modern, decent residential and treatment facility for severely
challenged autistic adults in New Brunswick. Nothing has been done for years.
We have failed New Brunswick's severely challenged autistic adults.
Community rhetoric has not helped. Autistic adults need a place to live.
My son will need a place to live with access to professional autism care
and autism trained staff, a place with educational and recreational dimensions
to provide a decent life for him and others like him.
Please
advise whether your government is considering helping autistic adults and is
working on a modern, reality based model. If that is not in the works,
please say so straight up.
Respectfully,
Harold
L Doherty,
Conor's
Dad
Fredericton
(Nashwaaksis)
(1)(b)
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1/5/12
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On behalf of Minister Dubé, I acknowledge
receipt of your email. Please be assured that it will be brought to her
attention.
Thank you for taking the time to write to the
Minister.
Yours,
Lynda Godbout
Executive
Secretary/Secrétaire exécutive
Minister's Cabinet/Cabinet
de la ministre
Minister of Health/Ministre
de santé
Tel: (506) 457-4800
Fax: (506)453-5442
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