Dear Elected Representatives: New Brunswick Needs Adult Autism Residential Care and Treatment

Dear Hon. Premier Gallant, Deputy Premier Horsman,Speaker Collins,  Ministers, Party Leaders and Government Advisers:

Re New Brunswick's Lack of Adult Autism Care:

I am sure that you are all grappling with important issues in these weeks following a provincial election. Many issues have generated intense discussion and serious attention from all of our public leaders.  The issue of adult autism care however was not one of those issues. Neither the current governing Liberal Party nor the previously governing Conservative party mentioned autism in their platforms.  The Green Party did propose regional autism group homes which would certainly help those with autism spectrum disorders who suffer from light to moderately severe autism challenges .  Only the NDP recognized the need for an autism center in New Brunswick which could provide treatment and permanent residential care for those, like my son, with severe autism disorder, profound developmental delay (intellectual disability) and epileptic seizures the latter two conditions being commonly associated with severe autism disorders.  

It is difficult to understand why our governing parties and their leadership have refused to take the steps necessary to help adults with autism lived decent, secure lives in New Brunswick. There can be no dispute about the need to address this issue.  In a province where the expressions "community" and "inclusion" are used like currency the approach to adult autism care has been to banish autistic youth and adults to the Regional Psychiatric Hospital in Campbellton on our northern border with Quebec and in some cases out of the province to the Spurwink facility in Maine.  It would be much more humane, and much more in keeping with the values that I believe all New Brunswickers share, to keep our autistic adults closer to home, closer to their families in group homes as suggested by the Green Party and in cases of greatest severity in an autism specific center as indicated in the NDP election platform. 

New Brunswick has achieved international recognition for the steps it has taken in early intervention autism services, most recently in the Summer 2014 Newsletter of the Association for Science in Autism Treatment which interviewed Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell the intellectual architect of NB's autism model.  The newsletter interview mentions the role of parents in advocating for the establishment of the early autism model.  As one of those parents I can also confirm that we advocated with some success for the autism specific training of teacher/education aides and resource teachers to work with autistic students.  The development of the  program for training our educational resources has included a leading world expert in the area Dr. Eric V. Larsson.

 In addition to these resources NB also has the  Fredericton based Stan Cassidy Centre autism team which has been a critical tool in addressing the needs of autistic children and youth with tertiary care level challenges. Fredericton is also the home of the UNB-CEL autism intervention program which developed the autism program that trained most of NB's early intervention workers and school aides.  These successes can provide the base for development of a decent, humane and secure adult autism care system in New Brunswick.  It would save money currently being spent in Maine and live up to the community and inclusion cliches which sound so very good and which do reflect NB values; values which unfortunately have not prevailed in providing for adult autism care in NB.

Paul McDonnell Ph.D. is the person without whom the early and school year autism successes for which this province has been recognized would not have happened. In 2010 in a CBC interview he described the need for a NB adult autism care system and what such a system should look like:

"What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.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."

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 dymamic 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.

When we, as parents guided by Prof. McDonnell's autism expertise, advocated for early intervention services there were many naysayers who opposed our efforts both within and outside government advisory circles even some in our autism community. They were wrong.  We succeeded and we will continue the fight for decent youth and adult autism care and treatment services in NB.  

We ask all public decision makers on all sides of the legislative aisles to now show the initiative and leadership to get this job done to extend NB's internationally recognized model to provide care for NB's autistic youth and adults.

Respectfully,

Harold L Doherty

Conor's Dad

Autism and the Green Party New Brunswick 2014 Election Platform

I was pleased to see some autism issues addressed in the Green Party 2014 election platform.  Much as I like the Green Party, particularly leader David Coon, in standing up for NB's environment, I didn't expect anything relevant to my central "issue" ... autism.  I was wrong. Although there is not a lot of details on how specific changes would be put in place the statements of principle are encouraging:

ACCESSING HEALTH CARE

Establish regional residential facilities for autistic adults who are unable to care for themselves.

Regional residential facilities for autistic adults would be a major step forward for many autistic adults.  The proposal still lacks a central facility in Fredericton near the autism expertise located there which could develop the expertise to accommodate the most severely autistic adults and share their expertise with the regional facilities but it is much better than we have now with generic group homes with untrained staff as one option and the Campbellton Regional Psychiatric Hospital as another and placement outside the province as yet another.  A good start but autism disorders are heterogeneous in  nature and can be very complex at the severe, lower functioning end of the spectrum including sensory challenges, self injurious behavior, severe intellectual disability, epilepsy, gastro intestinal issues in addition to the social communication and repetitive cognitive, focus and speech patterns. It is the kind of complexity that requires varying expertise in both autism behavior and common comorbid medical conditions  ...  and requires a facility that can provide both residential care and treatment as required in the most severe cases.

 A Green Government would:

Provide the resources required to fully implement the provincial inclusion policy and ensure all children can achieve their full potential. For those children who are unable to function successfully in the regular classroom even with increased resources, provide alternative education settings within the schools.

The full implementation of "the" provincial inclusion policy would be helpful for many with autism disorders.  The Green Party also accommodates those, like my son, who are severely autistic and require alternative education settings within the schools.  We fought successfully for such accommodations for my son and the Autism Society New Brunswick has long advocated, over much resistance, for the alternative education settings within schools for those who can not function in the regular classroom.  An excellent step forward for all autistic children in NB schools.

I went for a stroll on the North Riverfront Trail early this evening.  I have deviated from autism occasionally on this blog site to feature pictures I have taken on the NRF Trail that I love.  On my walk I noticed the Green Party candidate in my home riding of Fredericton North busy with her Green Party colleagues putting up the sign in the picture below.  Although she was kind enough to stop and pose for a picture she had been working hard herself at getting the sign in the picture set up.  One of her colleagues, an acquaintance from my Brunswickan days at UNB by the name of John Bosnitch, came across the access ramp and chatted.  It was interesting to learn that the pleasant lady in the picture is also a level 3 mechanic.   She was not native to this area and was stranded here a few years ago with a damaged vehicle.  She was told it would take a while to effect the repairs. She then asked if she could work at the shop because she could not afford to pay for the work otherwise.  Since then she has worked up to a level 3 mechanic; very impressive to this son of an excellent army mechanic who lacks my father's skills.

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?

Dear Mr Alward, Cardy, Coon, Gallant: New Brunswick Still Needs A Permanent Residential Care and Treatment Centre For Severely Autistic Adults

Photo of my son Conor from a few years ago submitted to the Aquinian for an article by 

then Aquinian journalism student Karissa Donkin. 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 16 years ago at age 2

June 18, 2014

Dear Mr Alward, Mr Cardy, Mr Coon and Mr Gallant:

A provincial election will soon be held and one of you will be premier, once again if it is Mr Alward, for the first time if it is Mr Cardy, Mr Coon or Mr Gallant.  I respectfully ask each of you to consider this request for adult autism residential care and treatment and provide a direct response.

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.  

The significant changes that occurred in early intervention and autism education in  this province happened in direct response to strong parent advocacy primarily from parents with Autism Society New Brunswick. In our efforts we always sought credible evidence based services.  We were fortunate in having considerable guidance from Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell Ph.D. an autism expert who has been very active in providing public education about autism in New Brunswick. 

During the  2010 New Brunswick election  Dr. McDonnell was interviewed by CBC on the subject of adult autism care. The interview and analysis posted on the site are no longer available but he stated:

Paul McDonnell, 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)

If a major 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.   The ASNB polled our members on the desirable location for an autism centre and voted 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 a very interested father of an 18 year old severely autistic son I ask each of you whether if elected  your government will develop, during the next election term, the modern youth and adult autism centre described by Professor McDonnell and badly needed in New Brunswick.

Respectfully,

Harold L Doherty

Fredericton

Will New Brunswick Ever Act To Provide Adult Autism Residential Care?

The Campbellton Based Restigouche Psychiatric Hospital

 is the Only NB Based Residential Care Option for Severely 

Autistic Adults in New Brunswick

June 22, 2013

David Alward, Premier's Council on Status of Disabled Persons 
Hugh J Flemming, Minister of Health 
Madeline Dube, Minister of Social Development 
Dorothy Shephard, Minister of Healthy and Inclusive Communities 

Dear Premier Alward and Honourable Ministers:

Re: Residential Care and Treatment for NB`s Autistic Youth and Adults

I am the father of a 17 year old son with severe autism, developmental delays and epileptic seizures.  If his mother and I were to perish in an accident tomorrow my last thoughts would probably be filled with the knowledge that New Brunswick lacks anything resembling adequate residential care and treatment facilities for youths with severe autism and related disorders.  In that regard nothing has changed since the attached 2005 Toronto Star article, in which I am quoted,  concerning the youth who was housed on the grounds of the Miramichi youth correctional facility solely because he was severely autistic.  Shortly thereafter, in part at least because of Toronto media attention, he was moved to the Spurwink facility in Maine. 

As our son ages into adulthood we, his parents, will likely grow feebler and ultimately will die. No adult care facilities for severely autistic adults who require permanent residential care and treatment exist in New Brunswick.  I have worked on this issue over the past decade and met on several occasions during the Lord and Graham government eras with Ministers and even with former Premier Graham.  Even before the Miramichi youth situation arose I advocated with other parents to move an autistic adult out of the Saint John Centracare facility.  I have visited Centracare on more than one occasion and I have also been given a tour by the operators of the Campbellton psychiatric hospital where some autistic adults live out there lives.

With that lengthy advocacy involvement on adult autism care, and lack of government response,  I did not honestly expect this administration, which repeats community and inclusion cliches in many government and official statements, and even pays for a new "community" government department, to actually take action on the issue of adult autism care and treatment.  I say this in the interests of candor not confrontation.  

Despite my skepticism about your philosophically driven approach to government I still have to hope, in the best interests of my severely autistic son and others, that you will, as the Lord and Graham governments did on early autism intervention, autism trained education assistants and reversal of the decision to close the Stan Cassidy tertiary care autism team, look realistically at the issues of adult autism care.  I ask you to take an evidence based approach to adult autism care issues. I ask you to take action.  I ask you to do something about the problem.

In that regard I refer you, once again, to an interview with  New Brunswick autism expert Dr. Paul McDonnell, UNB professor emeritus (psychology) and clinical psychologist, in 2010 in which Dr. McDonnell commented on the need for an enhanced adult residential care network:

Autism services needed for N.B. adults

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes. "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."

The professor, who has spent 20 years studying children who have autistic spectrum disorders, said New Brunswick could look to the programs being implemented in the United States where local governments have funded facilities that provide independent living options for people with disabilities. 

These facilities can be expensive, but McDonnell said the costs can be even higher in terms of the "human costs" if these reforms are not implemented. "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," he said. 

Enhanced network 

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership. The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"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," he writes. "The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

The 2005 Toronto Star Article follows. It demonstrates clearly how long these autism youth and adult problems have been festering in New Brunswick. Please take steps now to address these issues that torment so many with autism and their families in New Brunswick.

Respectfully,


Harold L Doherty
Fredericton, New Brunswick

cc. Brian Gallant, Leader of the Official Opposition Liberal Party of NB
     Dominic Cardy, Leader, New Democratic Party of New Brunswick
     David Coon, Leader, Green Party of New Brunswick
     Facing Autism in New Brunswick
     Media

-----------------------------------------------------------------------------------------

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital. 

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

"We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.``