6 Years Later New Brunswick STILL Hasn't Addressed Adult Autism Care

Years have passed, governments have come and gone, but still the elected  members of 

the New Brunswick legislative assembly, despite international recognition for its parent

 advocacy driven early intervention and school autism services, have not seen fit to provide

 a systemic adult care autism system in New Brunswick.

The following blog commentary is a re-post, word for word, of a commentary I posted on May 5, 2009: Autistic Adult Care Improvements Long Overdue in New Brunswick.  Since then one group home has received some training for staff from UNB via the Department of Social development. Beyond that though there has been very little progress. As I said in concluding 6 years ago:"The time to help autistic adults is overdue though ... long overdue"  Today, over 6 years later, that statement is truer, and sadder, than ever:

I have said often on this blog that I am very happy with the progress that has been made here in New Brunswick in addressing the needs for evidence based autism treatment and in ensuring that autistic children receive a real, quality education. There are still problems that have to be addressed concerning preschool interventions for and education of autistic children but the distance we have traveled in the six years since then Health Minister Elvy Robichaud announced in the New Brunswick legislature that the government was committing funds specifically to autism is remarkable. That progress has, for the most part though, been confined to autistic children. New Brunswick's adults with autism disorders are badly in need of improvements to the barely existent residential care system for autistic adults.

Despite the substantial, and increasing, numbers of autistic adults and the complexity of the challenges they face New Brunswick does not have a residential care system dedicated specifically to adults. New Brunswick adults with autism who require residential care currently live in group homes with persons with other challenges. The problem with a general residential care system is that the staff working in such places will not generally have autism specific training. Nor are the locations necessarily appropriate for persons with autism disorders.

The good will of New Brunswick's political leadership, from either of the two parties that have governed, is no longer a matter of debate in the mind of this autism dad. The path to progress began under the Conservative government of Premier Bernard Lord and has taken some major leaps forward under the Liberal government of Premier Shawn Graham. It would be dishonest for me not to acknowledge what both leaders and their parties have done for New Brunswick's autistic children. Far from slamming these leaders and their parties I personally thank them for what they have done to help our children with autism spectrum disorders.

The story is different though when it comes to New Brunswick's autistic adults where all aspects of autistic life have been largely neglected or mishandled. While there are many pressing needs at the adult level the fact is we have long been in desperate need of an autism specific residential care system with properly trained personnel. Such a system would require autism specific residences in each region of the province with autism trained staff.

There is also a need for a central adult autism treatment and residential care facility in Fredericton. That need is proven by the fact that New Brunswick has sent its more severely affected autistic youths and adults to facilities outside the province including to Maine in the United States. We currently have autistic adults living in the psychiatric facility in Campbellton. I know of at least one instance in Saint John where an autistic adult was living on a hospital ward. In the past an autistic youth, charged with no crime, convicted of no crime, was housed on the grounds of a youth correctional facility in Miramichi while awaiting a spot at the Maine facility.

The talent reservoir for the establishment of an adult care centre already exists in Fredericton which is centrally located providing relatively convenient access compared to more remote locations. The Stan Cassidy Centre which provides pediatric tertiary care services is located in Fredericton on the grounds of the Chalmers Hospital. The main campus of the University of New Brunswick and its excellent, community involved, psychology centre is located in Fredericton. The UNB-CEL Autism Intervention Training program is located in Fredericton and has already indicated that it foresees no problem in developing a training program for adult care workers. All of these resources could be drawn on to supplement and support a modern, secure community based and autism specific residential care and treatment facility.

New Brunswick needs a publicly operated, not for profit, community based residential care system for autistic adults with facilities in each region and a central facility in Fredericton capable of providing in house residential care and treatment for the more severely autistic adults for whom the group homes have already been proven not to be a solution. The political leadership of this province has shown a conscience, substantial good will, and determination in helping autistic children. The time to help autistic adults is overdue though ... long overdue.

Sebastien's Sad and Scary Adult Autism Reality in Moncton, New Brunswick

When autistic persons in New Brunswick turn 21 particularly severely autistic adults services many services will no longer be available. For severely autistic adults adulthood can be bleak, sad and scary. This is Sebastien's story, a severely autistic 21 year old from Moncton, New Brunswick ... as told by his obviously heartbroken and scared mother Lise.

New Brunswick's Band Aid Adult Autism Disorder Care and Treatment

New Brunswick has an approach to adult autism disorder care and treatment that can most charitably be described as a Band Aid approach.   There are many reasons for this Band Aid solution apart from the consistent waving of the "we are living in hard times" dismissal that usually accompanies the replies written for Ministers of Social Development  by their communications employees. The reality, regardless of the reasons, is that adult autism care in New Brunswick typically involves one emergency solution after another.  These emergencies have existed since before I became involved in autism advocacy after my 19 year old son's autism diagnosis 17 years ago. In the 17 years since I have seen one adult autism care emergency after another and those are only the ones which have been detected and reported by the Brunswick News reporters over the years.  New Brunswick, under pressure from determined autism parent advocacy and with the direct involvement  of the University of New Brunswick and its UNB-CEL program, developed a model for early intervention which has become recognized internationally.  We have also provided autism training for Teacher/Education Aides and Teachers although much remains to be done.  It was also autism parent outrage and advocacy that revived the tertiary level pediatric autism treatment service at the Stan Cassidy Centre that had been scheduled  for closure.

With all the progress we made in early intervention, education and pediatric autism care (to age 15 according to the Stan Cassidy Centrre web site) little has been done to implement a systemic solution to the residential care and treatment needs of autistic adults in New Brunswick.  Group homes with untrained staff and ad hoc accommodation for those who can function in those environments helps some but many require substantially higher levels of care ... tertiary level care such as that which exists until age 15 in New Brunswick but is truncated for unknown reasons at that age.  I am not aware of any other medical disorder which this province or any other province cuts off at an arbitrary age when it is well known that severely autistic adults require care for the rest of their lives.

Permanency should also be a factor of adult residential care.  Many autistic adults, particularly severely autistic adults, suffer when their daily lives are disrupted.  This fact does not appear to be factored at all into the decision making of the comfortable civil servants who have resisted for a decade the establishment of a permanent  level adult care facility which could provide permanent residential care for the severely autistic along with treatment and temporary care and treatment for those with greater functioning levels.  The facility could also act as a centre to ensure that autism specific group homes include autism trained staff and some professional oversight. 

New Brunswick has proven itself to be a humane and innovative, even a recognized model,  province  in the treatment and education of autistic children and youths. It truly puzzle me and concerns me more as my son and I both grow older  why we do not extend the tertiary level care we provide to autistic youth to autistic adults and why we do not develop the autism treatment centre and group home network system suggested by Professor Emeritus Paul McDonnell in a 2010 Election CBC interview.  What are our civil servants afraid of?  Whey do they not care about the needs of autistic adults, particularly those with severe autism disabilities?

Band Aid solutions have not provided the systemic adult autism care and treatment that is required in New Brunswick.  It is time to extend the innovative but evidence based approaches to autism care , treatment, and education to autistic adults in NB.  It is time to end the age based discrimination against NB autistic adults. 

THANK YOU Conservative MLA Jake Stewart and NDP Leader Dominic Cardy For Speaking Up In Support Of Adult Autism Care and Treatment in New Brunswick

New Brunswick governments have been outstanding in establishing an internationally recognized early evidence based autism intervention service and have made some gains in autism training for Education Aides and Resource Teachers.  

There has been no progress though  in establishing an autism centre for adult treatment and permanent residential care for severely impacted autistic adults with a network of autism group homes around the province.

It is very easy to become discouraged in advocating for adult autism care in New Brunswick.  The establishment of early evidence based autism intervention services was not easy but successes have been achieved.  While there have been backward steps such as the recent hard line 95% attendance requirement, since revised, which did not appear to take into pressures and demands on family and the time available to them the NB early intervention program has been recognized as a leading Canadian model by the Association for Science in Autism Treatment.  Some gains have also been made in provision of autism trained Education Aides and Resource Teachers although much more needs to be done including training more aides and teachers and ensuring that autism trained aides work with autistic students and not be displaced by untrained aides with more seniority.  Adult autism residential care and treatment however  remains abysmal and the first signs indicate that things are not likely to change under the current Liberal government. The NDP and Green Party both addressed adult autism care issues during the last provincial election.  Both the Liberal and Conservative parties were silent on autism issues.    

The adult autism care problem, as reported by Samantha Magee and the Miramichi Leader, has flared up again recently in Miramichi when a 19 year old non verbal autistic man was given notice of eviction from the special care home in which he resided solely because he was now an adult. Several persons including me spoke out yet again asking our government to address the adult autism care issue in New Brunswick.  Specifically we asked the government yet again to build an autism treatment centre in Fredericton near the expertise of the Stan Cassidy Centre which treats autistic children and youths and provide permanent residential care for those with severe dysfunctional autism disorder. The centre would also provide oversight and training for autism group homes in New Brunswick communities around the province.

The Miramichi Leader reported  former Autism Society New Brunswick President Lila Barry's comments urging the establishment of the autism centre based network as described by UNB Professor Emeritus (Pscychology) Paul McDonnell in 2010 and asked the Minsiter of Social Development for a response.   The government response came from Communications Officer Anne Bull:

"When asked if the minister of Social Development has looked into the possibility of building such a facility that could offer diagnosis, treatment and long-term living arrangements, the Miramichi Leader received the following response from communications officer Anne Bull.

“The Government of New Brunswick recognizes the need to provide high quality services that support our province’s families and individuals living with autism. As a government, we are committed to continuing to improve services to families and individuals living with autism. This includes examining the issues around living accommodations and supports for those with high care needs who require services beyond what is presently available. Government continues to make significant investments in services to adults with disabilities. Social Development works in collaboration with the New Brunswick Disability Executive Network and other key stakeholders to recommend on-going improvements to the Disability Support Program, finding innovative ways to support adults with disabilities and their families with the unique challenges they face.”

Communications Officer Bull did not provide a direct answer to the questions of whether the Minister of Social Development had even looked into the possibility of building the facility that could offer diagnosis, treatment and long-term living arrangements. Requests for such a centre have been made for years and it is easy to become discouraged when our government officials refuse to provide a direct answer to such an important question and instead pass the buck to a communication officer to provide a formulaic, meaningless answer.

A bright side to the recent events has been the support of Conservative MLA Jake Stewart and NDP Party Leader Dominic Cardy.  Mr Stewart was also quoted by the Miramichi Leader's Samantha Magee:

"Jake Stewart, Progressive Conservative MLA for Southwest Miramichi, agreed that the system was failing the Keenans and other families like them in similar situations. “Adequate facilities are needed in New Brunswick to alleviate strain on families found in this situation, and on individuals like Brandon who clearly deserves better. Also, a change in policy in Social Development is most likely needed,” said Stewart in an email to the Miramichi Leader. “‎I’m offering my support in the construction of new facilities, a potential change in policy, and of course I can and will continue to be a voice of reason for the Keenan family,” said the MLA. “But first, it’s important to allow Brandon to stay at M.O.R.E. Services from now on without worry of being displaced due to his age. If another facility can accommodate, this too may be beneficial. Time is of the essence.”"

NDP party leader Domonic Cardy responded to the recent events in Miramichi with a Facebook commentary:

Dominic Cardy

February 27 at 6:21pm · Fredericton · 

Adults with autism get a raw deal in New Brunswick - often shipped off to a facility in Maine. During the election the NDP committed to build a residential facility here in New Brunswick where adults with autism who need the care can get it, 24/7. The Liberal government has been supportive of this idea but, as you can see from the story below, we need to move faster.

This is why we have to rein in wasteful spending: so we have the resources to look after the folks who need our help.

As the parent of a severely autistic 19 year old son who lives at home and requires 24/7 care I know that many parents face daunting challenges caring for their autistic children and find it difficult to continue to provide that care, while earning a living and still find the energy, time and willpower to continue to advocate in the face of government and bureaucratic inertia and indifference  for humane, professional adult autism care and treatment but ... we have no other choice; we have to do our best to remain strong and to remain optimistic and to continue the fight.  

In the meantime THANK YOU Jake Stewart and Dominic Cardy for your support and THANK YOU Samantha Magee and the Miramichi Leader for your attention and outstanding journalism on adult autism care and treatment issues.  

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

Ignoring Training Requirements and Realities Will Undermine NB Autism Intervention Services

A Fredericton mother was heard on CBC info am a short while ago, once again expressing her opinion that overall the new NB  Autism intervention policy is good. She basically stated that 20 hours of treatment should mean 20 hours of treatment. Everybody agrees with that statement. Unfortunately the problem with the new policy isn't the 20 hour accountability policy. The underlying problem is the lack of anything in the policy to provide for properly trained personnel to provide the 20 hours in agencies around the PNB. Without proper training the treatment quality will diminish substantially and may even be counter productive.

The other problem with the policy is the lack of notice that was given to the agencies some of whom have indicated it will be very difficult and perhaps impossible to meet the new standards. Some agency employees have stated publicly that they will probably not be able to continue. The impact if agencies can't deliver under these conditions will be felt by children with autism disorders.

A parent has already commented on this blog that their child's appointment for intervention assessment has been postponed as a result of the changes and lack of notice. Everyone agrees that 20 hours should mean 20 hours but it will not be done by ignoring training requirements OR proper notice requirements for adjustments to be made.

Support and Care for Individuals with Autism Spectrum Disorder in New Brunswick - The Report of the University of Calgary School of Public Policy

"Autism spectrum disorder (ASD) is a lifelong neurological condition estimated to affect as many as one in 88 children. It is now the most common neurological disorder affecting children and one of the most common developmental disabilities. Many individuals living with ASD will need some level of support over their entire lives. In cases where adolescents and adults with severe autism are placed into long-term care or other supported housing arrangements the annual cost of housing, which includes caregiver time, can be $400 per day, amounting to approximately $150,000 a year.  Few Canadian families generate sufficient income to cover such high costs of support. Even where families with ASD dependents have income to pay for some of the required care needed, they face challenges finding available and qualified caregivers. Unfortunately, as families of ASD dependents age or become financially unable to care, it is not obvious how their adult with ASD will be supported other than with the burden falling on the state." 

The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder - University of Calgary School of Public Policy 

New Brunswick Social Development Minister Madeleine Dubé has acknowledged receipt of the University of Calgary School of Public Policy report.  The immediate reaction to this information may be "So What?"  The fact is we, as parents, as caregivers, as advocates for our children and others with autism and related disorders, must ensure that all relevant information is placed before government decision makers.  It is part of what we did here in New Brunswick in advocating for evidence based early intervention and school services for children with autism and for  the continuation of the tertiary care program at the Stan Cassidy Centre Autism Rehabilitation Services team. It may not seem as exciting as some of the high profile campaigns that hit the New Brunswick media but it is, in my humble opinion, of fundamental importance in advocating for evidence based, humane autism support services across the lifespan of children, youth and adults with autism and related disorders.  

They Just Don't Give A Damn: 2007 Adult Autism Care and Treatment In New Brunswick Was Abysmal - 2014 Nothing Has Changed, Still Abysmal

Following this comment is a re-posting of a comment I posted on this site 7 years ago in 2007 about the abysmal state of autism youth and adult residential care and treatment in New Brunswick, Canada. 7 years later and nothing has changed. Well, one thing has changed, a very important part of my life has changed.

My son with severe autism and intellectual disability is now 7 years older.... and his Mom and Dad are also 7 years older.

Time marches on. Our autistic children are becoming autistic adults. Our political and government leaders have sat on the sidelines fiddling and twiddling and doing absolutely nothing to help.

 They just don't give a damn.

Autism Youth and Adult Residential Care & Treatment Still Abysmal in New Brunswick

In October 2005 the Toronto Star reported on the case of a New Brunswick autistic youth who was being housed by the Province of New Brunswick on the gounds of a youth correctional facility. The youth had committed no crime. The state of New Brunswick's youth and adult residential care and treatment facilities was so bad, virtually non-existent for those with more severe and challenging autism disorder, that the province felt it was the only place that could accommodate the youth while they waited for his admission to a facility in the United States. The Toronto Star article follows this comment. Unfortunately, as the letter from Stephen Robbins posted here a couple of days ago indicates things have not improved any since then. In New Brunswick we must still export our autistic youths and adults out of the country for decent residential care and treatment.

From a personal perspective this issue weighs heavily on my mind. My son Conor was 9 at the time of the first story. He is now 11 and nearing the age of the two youths in these stories. In the meantime youth and adult residential care and treatment in New Brunswick have not moved a single steop forward. The bureaucracy does what the bureaucracy always does. It delays, it denies that problems exist, it worries about the careers of its members and whether they might be embarassed but it takes no significant action on critical issues affecting some of New Brunswick's vulnerable members.



" Autistic boy kept in New Brunswick jail

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

....

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007
Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher's aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government's lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B.

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

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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.``

New Brunswick Queen Elizabeth II Diamond Jubilee Medal Autism Advocate Recipients: Some Missing Names

I am not spurning the recognition nor arguing with the list of autism advocates recognized by the Autism Society Canada in partnership with the Governor General of Canada with Queen Elizabeth II Diamond Jubilee Medals.  I do not seek medals of any kind or financial reward for my autism advocacy, I seek better treatment, better services, better lives for my son and others for whom autism is a serious disorder that limits their daily functioning (DSM5) and limits their lives. But it is nice to be recommended by the Autism Society Canada which is also itself comprised of autism advocates.  I have to point out though a curious anomaly that occurred with the New Brunswick recipients ... three men and no women were named despite the important role of so many women in NB autism advocacy.  Also one person with Aspergers who contributed here in New Brunswick, and in Senator Munson's autism proceedings, was also left off the list. 

This might be just a question of numbers, with three allotted for NB,  but the reality is that in New Brunswick far more women than men have been involved in public autism advocacy and many of them have played very important roles in bringing New Brunswick international recognition for its autism services and programs (even though more progress is still needed). 

I am listing the following names of women in New Brunswick who I know advocated publicly and with great result.  More names could be added for sure but these are some that I know first hand are  deserving of recognition for their efforts.   Personally I did not seek the same goals as some of those listed  but they were all persistent, effective autism advocates.  In alphabetical order (by last name):

1. Lila Barry
2. Nancy Blanchette
3. Dawn Bowie
4. Heather Chamberlain
5. Karen Hammel
6. Marsha Manuel
7. Debi McDonald
8. Darlene Pugsley
9. Linda Richard
10. Charlotte Rocca
11. Shirley Smallwood
12. Pamela Weaver

In addition to the omission of women from NB's list of recognized autism advocates it would be just plain wrong to ignore the very important efforts and contribution of a person with Aspergers who overcome some of his own personal challenges to speak publicly in front of parents' meetings, sat on the ASNB Board of Directors and was recognized and quoted in Senator Munson's autism report Pay Now or Pay Later:

 (…) if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

Jason Oldford, Fredericton,
New Brunswick (12:32)

I am sure it was difficult for the Autism Society Canada people who had to pick the names of autism advocates across Canada to receive medals.    I simply want to highlight the many women, and Jason Oldford a gentleman "on the autism spectrum", who also made very large contributions to autism progress in New Brunswick. 

Conor's Fredericton 2012 - Part II

The Autism Society New Brunswick met on several occasions with senior civil servants during the administration of successive provincial governments to advocate for a modern residential care facility and system. The concept was to have a  facility located in Fredericton because of its central location and proximity to the autism expertise of  UNB, UNB-CEL and the Stan Cassidy Centre. The centre would provide an alternative to the general psychiatric hospital facilities at Centracare in Saint John and at the Regional Hospital in Campbellton.  The professional advisers at the centre could then provide services on as needed basis to group homes situated in local communities around the province for those with more moderate impairment levels.  

I have personally suggested that an additional reason for locating the central residential care and treatment facility in Fredericton  is Fredericton's outstanding natural environment.  So far, no luck. So far, immobility of thought and action have prevailed.  The ideological rigidity of the current Alward government  further preclude any development as described above and on the CBC web site by Clinical Psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell.  The years long frustration though will not prevent me from continuing to advocate and do not prevent our family from enjoying the natural wonder of Fredericton.