Wednesday, February 13, 2013

No Meaningful Inclusion, No Community Living for NB Youth and Adults With Severe Autism Challenges

                                              Resigchouche Regional Hospital Centre

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on sending autistic youth and adults out of New Brunswick to receive the care we could provide in New Brunswick if outdated, non evidence based models of community and inclusion did not dominate the thinking of our government leaders, educators and service providers.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.


Harold L Doherty, 
Conor's Dad
Fredericton (Nashwaaksis)

Dubé, Hon. Madeleine (DH/MS) 
to me

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. 


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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