Friday, March 06, 2015

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 fr 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:

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.  

Thursday, February 26, 2015

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

Monday, February 23, 2015

Larry's Gulch Inclusive Education Review June 21, 22, 2012

Meeting of Senior Department of Education Officials With Gordon Porter And Other Advocates of Extreme Everyone In the Mainstream Classroom Inclusion June 20, 21, 2012
Information from CANADALAND web site.


L: Yude  M. Henteleff, C.M., Q.C., L.L.D. (Hon.)     R: Harold L. Doherty 
at the Atlantic Human Rights Centre Inclusion Conference Crowne Plaza Fredericton-Lord Beaverbrook, June 14, 15, 2012 Mr. Henteleff presented, a paper advocating for a range of learning placement optionsin order to ensure meaningful inclusion:  MEANINGFUL ACCESS, INCLUDING THE PROVISION OF A WIDE RANGE OF PLACEMENTS, AS AN INTEGRAL PART OF INCLUSIVITY IN EDUCATION

It was a privilege, on June 14, 15, 2012  to attend the Atlantic Human Rights Centre Inclusion Conference at the Crown Plaza in Fredericton and to meet the very distinguished lawyer and disability advocate Yude Henteleff above. I personally have tried for many years to advocate for a rational evidence based inclusive education policy that provides a range of learning environments to accommodate the diverse challenges and needs of persons with disabilities particularly students with autism spectrum disorders.  Unfortunately anything that was discussed at that conference was not likely to have been considered by the NB government and department of Education officials when they met with Gordon Porter, and other "all students in the mainstream classroom inclusion philosophy " one week later at Larry's Gulch.

Autism Spectrum Disorder has been increasingly recognized for its heterogeneity particularly with respect to cognitive deficits, sensory challenges, self injurious behaviors,  and learning disabilities.  In NB the fight for an education policy that allows for alternative learning environments to accommodate those students, like my son, who do not function well in the regular classroom, and can even be harmed by that location,  has largely been undone by Gordon Porter and the NBACL including various members of the influential Carr family and their NBACL associate Danny Soucy.  At the June 14 2012 conference above Mr Henteleff and I were  voices advocating for evidence based accommodation of the needs of students with disabilities.  Gordon Porter was there presenting individuals with anecdotal horror stories about segregation. 

The conference appeared to have been a waste of time and money.  One week later,  at Larry's Gulch,  senior education officials and government officials met with Gordon Porter, Canada's most  obsessive advocate for reducing learning options for all students to the mainstream classroom.  Neither I, a former ASNB president and long time critic of NB's extreme mainstream only inclusion policy, nor the distinguished lawyer and disability advocate Yude Henteleff were present.

I  met Mr Porter,  NBACL/CACL icon,  on several occasions during the MacKay and Ministerial Committee inclusive education reviews. During a breakout session in a room at the MacKay review Gordon Porter grew visibly annoyed with me and another ASNB parent advocate when we advocated a range of learning settings to accommodate some students with autism disorders who would have difficulty functioning in the mainstream classroom.  He dismissed our comments by telling us that "you people should be thankful" for what we had.  I  have no doubt that when he attended Larry's Gulch with fellow NBACL official,  and co-author of the last of several inclusive education reviews, Angela Aucoin, Krista Carr of the NBACL and her husband Jody Carr, then the Minister of Education, and Danny Soucy MLA and NBACL official at various times,  that he pushed his obsessive,  extreme inclusion philosophy and made no positive mention of the need for a range of learning environments to accommodate those with severe autism and other disorders.

I wasn't present at the Larry's Gulch inclusive education review but I am sure that it likely topped the  Wayne MacKay and Ministerial Committee reviews and any views that did not support the Gordon Porter extreme, all students in the mainstream classroom, inclusion philosophy.

Wednesday, February 18, 2015

#GxE Autism Paradigm Still #MSSNG From Autism Disorders Research, Understanding


Several years ago it appeared that a new paradigm for understanding autism disorders was emerging, one which would allow greater understanding of the cause, or causes, of autism.  Historically, as was noted by Teresa Binstock, researchers, and those who fund autism research, took the view that autism has  "gotta be genetic".  By 2010 there was hope that finally the autism researchers' obsessive belief that autism is entirely genetic was giving way to the GxE (Gene Environment Interaction) model.  With the CATS study it appeared that  GxE was actually being reflected in autism studies. Since the CATS study though it appears that autism researchers and those that fund such research, including Autism Speaks, have fallen back into their old, unproven belief that autism is entirely genetic.

Autism Speaks reported on  its MSSNG web site page the results of the recent autism genome research project:  


Surprising finding makes cover of Nature Medicine; study data becomes part of historic first upload to Autism Speaks MSSNG portal for open-access research

 
January 26, 2015

The largest-ever autism genome study reveals that the disorder’s genetic underpinnings are even more complex than previously thought: Most siblings who have autism spectrum disorder (ASD) have different autism-linked genes."

The MSSNG project and page reflect Autism Speak's deep embrace of the unsubstantiated belief that autism is entirely genetic.  There is no mention of the possibility that autism arises from gene environment interaction. Although there are now more and more genetic components speculated to give rise to autism disorders there is no mention of the word or concept of environmental factors or gene environment interaction as possible components of autism causation. Instead the gene researchers having failed to identify a specific cause of autism turn to an explanation that many parents, including me,  have suspected for some time ... that autism is in fact a complex group of varied disorders or symptoms;  that autism is extremely heterogenous in nature and that autism should more properly be referred to as autism(s) or autism disorders.  What the gene researchers and their funding backers at autism speaks do not seem to acknowledge is that with the varied autisms, autism disorders or symptoms being recognized and with no specific causal bases for these mulitude of genetic factors it might also be time to re-xamine or at least consider the possibility that autism might result from GxE, gene environment interaction. 

Maybe someday the "it's gotta be genetic" obsession will receive more critical analysis from autism "experts". For now though GxE is still MSSNG in the mind sets and articles of faith of autism's most prominent researchers and funding authorities for autism research.