Why Do New Brunswick Governments Ignore Needs of Severely Autistic Adults? When Will They Ever Learn?

The Restigouche Psychiatric Hospital on NB's Northern Border Far From Most NB Families is a 

Massive Institution and the Present and Future Home for Severely Autistic Adults in 

the Inclusive Community of New Brunswick. 

My Son Conor Is A Great Joy But His Severe 
Autism Presents Many Challenges, As Things Stand 
He MAY Spend His Adult Life AD (After Dad) 
in the Restigouche Psychiatric Hospital

Autism spectrum disorders and the challenges they present to those who suffer from them continue on into adulthood in many cases, particularly for those who did not receive the benefit of early intervention.   So why should New Brunswick's only tertiary level health care service, that offered by the Stan Cassidy autism team in Fredericton, be arbitrarily cut off at age 16. Why has New Brunswick not developed an adult autism treatment and permanent residential care facility for the most severely autistic who will either be sent to Spurwink Maine or as is more likely as the screws tighten to the Regional Psychiatric Hospital in Campbellton far from the bulk of the population in Canada's most community and inclusion obsessed province?

"Stan Cassidy Centre Autism Team

Who we help

We have a provincial mandate and therefore serve the entire province of New Brunswick. Service to our clients is provided in their language of choice (French or English). We see school-aged children until their 16th birthday."

It is a matter of record that the NB government was once working on an adult autism residential care and treatment facility as an alternative to the very expensive costs of sending adults to the Spurwink facility in Maine at $300,000 per year per person or sendign them to lives spent far from family in a psychiatric hospital with no autism expertise in Campbellton. In an article by Mary Moszynski published on page A4 of the Times & Transript on July 21, 2006 it was reported that:

"The province doesn't have a facility specifically for New Brunswickers who suffer from autism and can no longer remain at home. However the Department of Family and Community Services has been examining the costs of building such a facility. Last year Tony Huntjens, former family and community services minister, said publicly he was working on a proposal to open a residence where those with autism could receive specialized care."

The adult autism facility that Minister Huntjens was planning never materialized. The Minister himself stepped down not long thereafter  though.   The concept of a facility specific to autism has been under attack ever since then by various individuals and groups claiming to have a community focus who conveniently ignore the severely autistic adults who have been banished from their communities because the communities lacked the ability to care for and treat those with severe autism disorders. 

Although successive  Cabinet Ministers and NB governments have continued to keep severely autistic adults in exile in inappropriate settings former Minister Huntjens has remained true to his principles by sharing his experience with concerned parents of severely autistic adults including his comment to me in relation to my commentary on the need for an autism specific facility to provide residential care and treatment for severely autistic NB adults:

"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

" totally agree...It is long overdue...could save the province a lot of money, employ NBers, and have the people close at home and family. When will they ever learn?"

Antoon Jozef Huntjens, August 24, 2014

Mr Huntjens comments on August 24, 2014 were similar to those of former NB civil servant Wendy McLeod MacKnight:

"Harold - it is an embarrassment to me that you and I started discussing this back in 2003 after the preschool program started and no one has yet addressed it. We came close about 5 or 6 years ago, but got shut down. it is more than overdue..."

Wendy McLeod MacKnight, August 24, 2014

Unfortunately for my severely autistic, now 19 year old son, I still can not answer the question posed by Tony Huntjens.  My biggest fear, which I have tried not to surrender to,  is that NB governments, political and bureaucratic. might simply be too stubborn, uncaring and hypocritical to admit the realities of severely autistic adults as long as they are kept out of sight in the Restigouche Regional Psychiatric Hospital or out of the province. 

As I age though, as my son ages, as time runs out the question that continues to haunt me  is "when will they ever learn?" 

My greatest fear is that they never will. 

NB Adult Autism Residential Care Facility Needed: "It Is More Than Overdue" "When Will They Ever Learn?"

My 18 year old severely autistic son Conor waits for his slow poke Dad while we were out 

on a trail walk (Fredericton North Riverfront Trail). NB has known for 11 years (at least)

 that an adult autism residential care and treatment facility is badly needed.  

We are still waiting.

On June 18, 2014 I posted on Facing Autism in New Brunswick and on my Facebook page a letter I  sent to NB's political party leaders in which I commented on the long overdue need for an adult autism care facility in NB that could provide care for the most severely autistic and expertise to group homes around the province as articulated by Professor Emeritus Paul McDonnell whose 2010 comments are also re-posted herein: 

Prior to the commencement of the official election period early autism intervention issues have already received some needed attention in a new early intervention policy which provoked considerable reaction and vigorous discussion. What was not mentioned, what has never been mentioned, what never gets any serious attention, is the desperate need for an adult autism centre that could assist in providing providing ongoing training, leadership and supervision for adult autism group homes and assisted living arrangements and would also provided permanent residential care and treatment for those with severe autism disorders. 

On my personal Facebook page I received commentary from two people with considerable involvement and knowledge of autism issues from the government side of the discussion with former Education and Early Childhood Development Deputy Minister Wendy McLeod MacKnight and former Family and Community Services Minister Antoon (Tony) Huntjens 

Will Adult Autism Care Issues Be Considered During #nbvotes 2014?     Wendy McLeod MacKnight August 24 at 12:31pm Harold - it is an embarrassment to me that you and I started discussing this back in 2003 after the preschool program started and no one has yet addressed it. We came close about 5 or 6 years ago, but got shut down. it is more than overdue...

 

Antoon Jozef Huntjens August 24 at 1:16pm totally agree...It is long overdue...could save the province a lot of money, employ NBers, and have the people close at home and family. When will they ever learn?

Paul McDonnell, CBC Interview, 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)

As I have stated many times if an  autism centre is not developed to help enhance the group homes and provide permanent residential care and treatment for those with severe autism as Professor McDonnell has advised people with severe autism, including my wonderful, happy 18 year old son,  will continue to be sent to live  out their lives in Campbellton at the Regional Psychiatric Hospital. Apart from the  hospital character of that facility it is also located in a corner of the province 3 to 4 hours drive from most communities in New Brunswick and has no direct access to autism expertise.   Previous ASNB member polls  on the desirable location for an autism centre saw votes for Fredericton for several reasons, the two most critical being proximity to the autism expertise developed at UNB and the Stan Cassidy Centre, and the central location providing easier access for most families to their loved ones who would reside there temporarily and in some cases permanently. As it is those with severely autistic adult loved ones currently travel out of province or to the Restigouche Psychiatric Hospital on NB's Quebec border.

Will NB ever learn to save money and help our severely autistic adults by building a residential care and treatment facility in Fredericton or will we continue to spend money sending them out of province or send them far from family on the NB-Quebec border?

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.

Millions forWoodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question, Facing Autism in NB January 25, 2012

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)

Dubé, Hon. Madeleine (DH/MS)	1/5/12
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. 

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

"We Can Do Better" - Flashback - May 2004 Autism Education Rally

Autism advocacy is never easy as illustrated by this article covering a May 2004 rally held to push for ABA based instruction for autistic children in NB schools. At that time Conservative Family & Community Services Minister Tony Huntjens stated that an education program was being set up at UNB to train teachers to provide ABA based instruction. In fact the Conservatives did provide for approximately 85 Resource Teachers and Teachers Aides to be trained at UNB-CEL's Autism Intervention Training Program, a small but important first step in addressing the needs of New Brunswick's autistic students. Subsequently Liberal Opposition Leader Shawn Graham promised to train 100 TA's and Resource Teachers per year for 4 years at the nationally recognized UNB-CEL Autism Intervention Training program. Unfortunately, all signs now indicate that the UNB-CEL Autism Intervention Training training will not be provided as promised by Premier Graham. Unfortunately, it does not look like the Liberal government "can do better" as opposition critic Kelly Lamrock, now the Minister of Education, once boldly asserted.


Daily Gleaner | Provincial News
As published on page A3 on May 4, 2004

Parents march to protest tight funding for autism
Group contends age ceiling leaves many stranded

PROTEST:
(The Daily Gleaner/Dave Smith Photo)
Dawn Bowie, left, a parent of an autistic child, and 11-year-

JOEL O'KANE
for The Daily Gleaner

Frustrated parents picketed outside the Centennial Building on Saturday
against what they call "discriminate funding policies" by the Lord
government when it comes to educating children with autism.

"We're here so children of school age can benefit from the funding, because
right now it's discrimination," said Nancy Blanchette, who chairs the Family
Autism Centre for Education (FACE).

Currently, parents with autistic children can receive funding aid for their
child's special needs, but only up to age five.

Once they grow old, or enter the school system, the funding dries up.

Parents argue that they need the funding to pay for special education for
their children, such as applied behavioural analysis (ABA). They say that the
early intervention ABA offers for their children has made great differences,
but it isn't cheap.

"My son Justin was diagnosed with autism when he was about two years
old," said parent and FACE board member Dawn Bowie. "Back then, we
couldn't find much support around. There was none."

Bowie said the family did know about ABA, and was able to be evaluated
by a child psychologist who's an expert in the field.

"We paid big, big money. Tens of thousands of dollars. And we're still paying
big, big money."

ABA works one on one with an autistic child to pinpoint behavioural
problems and works to correct them. It teaches routine, responsibility,
and normal behaviour to children with autism.

Parents say that autistic children who receive ABA intervention are less
disruptive in school, and more apt to become socially involved.

However, many parents say the current funding is useless unless the age
restriction is lifted and children can continue to receive ABA after they enter
the public school system.

"We want to let the government know that autism doesn't go away at the age
of five," said Blanchette. "A lot of children aren't even diagnosed until
later than this, so there's still progress to be made to help them reach
their full potential.

"If (Premier) Bernard Lord's touting his quality learning agenda, where no
child gets left behind, he has to understand that this also applies to children
with special needs in the school system."

FACE had publicly invited Lord to come out and talk to the crowd
on the weekend, but was instead greeted by Fredericton Liberal
MLA Kelly Lamrock.

"We can do better. We know the options," he said. "We know that
ABA treatment works. Premier Bernard Lord says he has to make
tough choices? I say he made bad choices and cut taxes. If you
can get up every day and deal with this, you deserve the Liberals'
support."

Tony Huntjens, minister of Family and Community Services, says that
the current funding system is new, and it will take time to work out
the kinks.

"First, we need to tackle autism at an early age, because that is
where most good can be done," he said. "Once they get to age six or
enter the public school system, these children can work with their
teachers."

Huntjens said the Lord government has no intention of raising the age
limit for autism funding.

Parents say that children with autism need to have ABA throughout
their childhood, and that leaving the problem to the teachers when
their children enter school will only put more strain on the public
school system.

"I've told Minister Huntjens that he might as well throw his money to
these families over the Westmorland Street Bridge," said Dawn Bowie.
"The progress ABA makes stops after these kids get to school, so what
good is that?"

Huntjens said an education course is being set up at the
University of New Brunswick that will train interested teachers to
provide ABA to potentially autistic students.