Historic Discussion of Adult Autism Care and Treatment in the New Brunswick Legislature May 28, 2015

Autism Advocacy in front of the New Brunswick Legislature, autistic persons, family and friends gather with MLA Ernie Steeves to advocate for Adult Autism Care and Treatment

It was an historic day at the New Brunswick Legislature yesterday as discussion and debate began on issues of adult autism care and treatment for the FIRST time to my knowledge that has happened. Opposition MLA Ernie Steeves pictured above in the white shirt and blue tie filed the motion and led the discussion.  Mr Steeves presentation was excellent, well informed and put the issues of adult care and treatment on the NB Legislature records.  The Government response by Social Development Minister Cathy Rogers did not really address the issues although in fairness to Minister Rogers she did ask me for a meeting to discuss the issues presented by Mr. Steeves.  The Opposition reply to Minister Rogers was delivered by MLA Jake Stewart who had previously taken up the issue of adult autism in a very meaningful way by advocating successfully for a young autistic adult in his riding who was on the verge of being evicted from his special care home because he was turning 19.  Mr Stewart's reply was also very passionate, well informed and was important to ensure that the discussion stayed on topic. The discussions started late in the afternoon 5:00 pm and will continue on another day. A note that some may find particularly interesting: two autistic persons were present in the legislature during the discussions; (1)  Ricky Barry shown with the ball cap holding the sign and standing beside Mr. Steeves in the picture above and (2) young Cameron  brought in to the legislature later by his mother. 

Above MLA Ernie Steeves who filed  and led the Opposition Motion on Adult Autism Care and Treatment Services and autism advocate Cynthia Bartlett 

Government MLA Brian Kenny with Autism Advocate Harold L Doherty

MLA Kenny was very supportive

Above MLA Trevor Holder (L) and (R)  Prominent Human Rights and Disability Advocate  Randy Dickinson who, among things,  serves as NB Human Rights Commission Chairperson and Fredericton City Councillor and  formerly served as  Executive Director  of the Premier's Council on Status of Disabled  Persons.  Mr. Dickinson came to the Legislature to exxpress his support for the need for adult autism care and treatment. 

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.  

19 Year Old Non Verbal Autistic Man Evicted From Miramichi Special Care Home Because He Is An Adult

Huge gaps remain n New Brunswick's adult autism residential care and treatment system. An autism specific residential care and treatment centre and autism specific group home system is needed to bridge those gaps. 

HON. CATHY ROGERS

Minister of Social Development

HON. VICTOR BOUDREAU

Minister of Health

HON. BILL FRASER 

MLA Miramichi 

HON. STEPHEN HORSMAN

MLA Fredericton North

As an autism advocate for over 15 years in New Brunswick (and father of a 19 year old severely autistic son) I was saddened, though not at all surprised, to read the report by Samantha Magee of the  Miramichi Leader of a 19-year-old, non verbal autistic man whose family was informed by Social Development on Feb 9 that he would not be able to remain in his special care accommodations in Miramichi: after February although he has been given a reprieve until March 31. The Leader reported that his transition to adulthood was the reason for the forced departure:

"Bob Daley, residential services manager for M.O.R.E. Services Inc., said in an emailed statement to the Miramichi Leader that the issue is related to Brandon’s age and funding.

“For a number of years, M.O.R.E. Services has been providing a children’s service in the upstairs apartment of the home in question. When a resident reaches the age of 19, they are no longer considered a child and therefore receive services through adult programs,” he said."

I have been involved with public autism advocacy in New Brunswick and Canada  for over 15 years.   I know that there have been several high profile incidents of youths and young men being sent to the Spurwink facility in Maine at considerable public expense because autism specific treatment and residential accommodation including drops off between the ages of 15 (Stan Cassidy Autism Centre) and 19. 

Concerns over the lack of adult autism treatment and care facilities have been presented to successive governments for over a decade.  A proposal by distinguished autism expert, clinical psychologist and UNB professor emeritus (psychology) Paul MdConnell Ph.D. was made public in 2010 on the CBC web site.  The proposal for a Fredericton based autism residential treatment and care facility (near the UNB-CEL Autism staff and the Stan Cassidy Autism Centre also included autism specific group homes with autism trained staff and oversight from the Fredericton centre.

New Brunswick has been a Canadian and North American leader ( as recognized by the Association for Science in Autism Treatment) in establishing early intervention services. We have also made advances in autism trained education aides and resource teachers.  There is no reason in principle that we could not have extended the expertise we have developed to the adult care and treatment level as described by Professor McDonnell (CBC, 2010) and provided both a centre for those with severe autism needing permanent care, treatment and oversight and autism specific group homes in Miramichi and around the province to keep as many autistic people as possible close to home, family and community.

Cost has not been the primary obstacle in the refusal to develop an autism centre and network of autism specific group homes.  Costs of sending each person to Spurwink have been estimated at approximately $300,000 per year and would be saved with the development of the NB based adult care network.  Jobs would also be created in the center and group homes for the trained staff.

As a father of a now 19 year old severely autistic adult son I genuinely empathize with the Miramichi adult and his family and I can provide no reasonable explanation as a long time public autism advocate as  to why NB with its proven ability to develop a well recognized early autism intervention program, and its extension of that program to train our school teachers and aides can not organize a centre based network with autism specific group homes around the province.  Had that been done years ago the current situation in Miramichi would probably not have arisen.

Please take this letter seriously, as a call to action to develop the autism centre and group home network proposed by Professor Emeritus Paul McDonnell in 2010.

Please act to provide residential care and treatment for NB's severely challenged autistic adults before more time is needlessly wasted.

Respectfully,

Harold L Doherty

Fredericton North

New Brunswick

Is 2015 The Year New Brunswick Finally Addresses Serious NB Adult Autism Residential Care and Treatment Needs?

During the  2010 New Brunswick election  Dr. McDonnell, as noted above, was interviewed by CBC on the subject of adult autism care. The interview and analysis posted on the site are no longer available online but he stated at that time (bold highlighting added by me):

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)

 The autism residential care and network system described by Dr. McDonnell was raised with the parties during the 2014 election.  The Green and NDP parties responded positively to the matter with mentions in their election platforms.  The Liberal and Conservative parties ignored autism issues entirely so there is no reason to assume that the currrent Liberal government will address the needs of  New Brunswick's autistic adults particularly those with severe autism disorders and co-morbid conditions like my son Conor who will probably be forced to live out his life in the Restigouche Psychiatric Hospital in Campbellton's in NB's northern border with Quebec.  All the community cliches in the world will be of no assistance to my son and other severely autistic adults most of whom will be living many hours drive from their families.

It is not clear for the reasons that follow why the government of New Brunswick has refused to addressed the serious health and residential care needs of autistic adults.  The usual suspects have been:

1. Costs

The network described above by Paul McDonnell could actually have resulted in government cost savings. Some of NB autistic adults have been sent to Spurwink Maine for many years at costs of several hundred thousand dollars per year per person.  With the current Liberal government dedicating millions to capital investment during its election term it would be a good opportunity to build the autism centre referenced by Paul McDonnell a centre which could provide quality residential care for those in need of such and professional expertise and oversight for community autism homes and assisted living environments around the province.  

2.  The Taboo Against "Institutions", "Centres", "Bricks and Mortar"

In New Brunswick various groups and individuals have persisted in  repeating community cliches like "no bricks and mortar" when various special care needs are raised. (To my knowledge ALL of these individuals live in bricks and mortar buildings). These same people simply ignore the evidence that their total faith in undefined community solutions has not addressed the needs of autistic adults in NB.

In the autism context a meeting was held several years ago with Ombudsman and Youth Advocate officials Bernard Richard and Christian Whalen.  I attended in the company of NB autism expert Paul McDonnell.  McDonnell's proposal for an autism center and network was raised with these gentleman, neither of whom has any known autism expertise, but was quickly dismissed, and not discussed in any meaningful way, by Mr. Richard or Mr. Whalen.  Mr Richard was interviewed recently on CBC when the government announced funding for a youth complex needs centre.  Mr Richard, of Moncton, once again, voiced the "no bricks and mortar" cliche before advocating for Moncton as the best location for a youth complex needs centre.

There are in today's world existing examples in other areas of mental health care which could be borrowed to develop the physical structure necessary to accommodate residential care and treatment needs of autistic adults in a way that would allow for a range of environments to accommodate those with greater liberty needs and those with greater security, assistance and health care needs. The Hogeway dementia care village facility is one such example which is receiving world wide recognition.

The costs and and community concerns would in fact be addressed by the autism network described by McDonnell.  Such a centre would see monies being spent constructively in New Brunswick which would save monies spent  outside New Brunswick and would provide New Brunswick autistic adults with residential care and treatment in their communities for those who are capable of living in a group home or assisted living environment and in a centre in Fredericton near the autism expertise of UNB, UNB-CEL and the Stan Cassidy Centre for those requiring permanent residential care and treatment.  Fredericton, an increasingly bi-lingual city, would also be able to provide centre services in French and English as demonstrated by the UNB-CEL autism intervention training program.  The UNB-CEL autism program has received international recognition as  a model early intervention program for training autism support workers and clinical supervisors and has done so in both French and English.  (The Universite de Moncton was asked to participate in the initial stages of developing the UNB-CEL autism program but for reasons unknown to me declined the opportunity to participate and has developed no similar program).

The need for an adult autism care network can not be denied in New Brunswick.  With an estimated  population of 11,000 New Brunswick'ers with autism many are also adults living in a hodge podge of arrangements without badly needed professional oversight or assistance.  Others have been  sent to a variety of institutional care settings.  Some well known cases are the autistic youth living on the grounds of the Miramichi  youth correctional centre (2005) before being sent to Spurwink Maine, the adult who lived at Centracare (2003) before being sent to Spurwink and those who have resided, and continue to reside, at the Restigouche Psychiatric Hospital on the Quebec border far from most families in southern-central NB. Unconfirmed reports indicate that some autistic adults have lived for periods of time on general hospital wards.

It is time to save money, provide assistance and positive, meaningful life development to those autistic adults who can not function independently in living accommodations near their home,  AND extend their life expectancies. 

It is time to walk away from the addiction to cliches while shipping autistic adults to locations far from families. 

It is time, it is long past time, since the events in 2003, 2005,  to seriously address NB adult autism residential care and treatment requirements and build the  autism network envisioned by NB autism expert Paul McDonnnell in 2010.