It is increasingly difficult to be polite when discussing the lack of compassion demonstrated by NB governments towards New Brunswick's adult autism population. As the letter from Gary Mayes to the Telegraph Journal in 2005 demonstrates, after two years, at that time, of flat refusals to act, the refusal of our governments to address adult autism care in a systemic, conscientious fashion over the last decade is fixed in stone: 

Today New Brunswick still needs appropriate residential facilities to meet the individual needs of NB adults with autism, particularly those with severe symptoms including sensory challenges, obsessive routines and self injurious behaviors.  An adult autism care network with a center for permanent care and treatment for those most severely affected by autism disorders and expertise available for autism group home care around the province was proposed by UNB Professor Emeritus (Psychology), clinical psychologist and autism expert Paul McDonnell in 2010.  That proposal would also build on the success enjoyed by New Brunswick in early intervention and school services; areas which also need improvement but have been recognized as models worthy of emulation.

The McDonnell  proposal has received no serious consideration from NB's current government. That was made clear to me in a pre-Christmas 2012 chat at Kings Place with Ken Ross, Assistant Deputy Minister of Health.  When I raised autism issues for discussion with Mr. Ross and indicated ASNB's interest in adult autism care with him he diverted the discussion by asking questions about ASNB's organizational status even though ASNB is the most transparent disability advocacy group in NB, is totally conflict of interest free in that it receives no financial subsidy from the government, and operates, unlike another major community organization, at arms length from government.  While not being financially indebted to the government ASNB has consistently invited government and party leaders to ASNB meetings, an offer which has been recently been taken up by EECD Minister Jody Carr and NDP Party Leader Dominic Cardy.

Mr. Ross's attempt to change the conversation was exactly the same tack he took over a decade ago when ASNB was advocating for evidence based early intervention for New Brunswick's autistic children.  Ultimately the Department of Health transferred responsibility for providing early intervention to the Department of Family and Community Services as it was then called even though autism disorders are, and were, recognized as mental health disorders by the Diagnostic and Statistical Manual of Mental Health Disorders versions, IV and 5.  We did ultimately get back to adult care in our pre-Christmas discussion but there was no indication from Mr. Ross that he was even aware of the network proposal  suggested by Dr. McDonnell, a proposal which was consistent with positions taken over the past 10 years in meetings with and submissions to the Province of New Brunswick.  Ken Ross is not an elected official but he is a key autism adviser to New Brunswick ministers of health over more than a decade.   His lack of professed awareness of the ASNB or McDonnell positions is a strong indication that our elected officials have either ignored or outright rejected the proposed modern autism adult care network whether they were, or were not, acting on Mr. Ross's advice in doing so.

While NB has done much to help autistic children and students our governments  simply refuse to seriously address the needs of  autistic adults particularly those with severe challenges who must live out their adult lives in the psychiatric hospital in Campbellton.   It is difficult to avoid the conclusion that, when it comes to autistic adults in need of residential care and treatment, our governments, and/or some of their key advisers,  simply do not care.

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:

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.

The only promises from politicians that count however are firm and clear  commitments to take specific actions within an identified time frame.  The Nova Scotia Health Minister's rhetoric about adult autism support amounts to "not today but maybe tomorrow".   You don't have to be a political scientist  to know the value of such promises. 

Kim Oakley author of  Autism, Epilepsy and Self-Injurious Behavior has broken the autism feel good cliche glass, again, in No Justice for Severely-Autistic Adult in California a comment about Van Ingraham "a severely- autistic man who had his neck broken in 2006, while living at Fairview Hospital, one of California’s Developmental Center’s that serves the forgotten population of adults with severe autism and behavioral issues."   Oakley's comment highlights  excerpts from a report  titled Basic police work ignored in autistic patient’s suspicious death by Ryan Gabrielson published February 24, 2012 on California Watch,  Founded by the Center for Investigative Reporting.


The suspicious circumstances of Van Ingraham's death as reported on California Watch is not easy reading for me as the parent of a severely autistic 16 year old son.  The pictures posted with the report are also very moving.  I am sure it is not easy for Kim Oakley as the parent of a severely autistic son to provide her comments but she does so and her thoughts should be read and considered by anyone facing similar challenges, including public authorities responsible for caring for severely autistic adults. 


I strongly recommend both the California Watch report by Ryan Gabrielson and the comments on the report by California autism advocate Kim Oakley who never shies away from highlighting the challenges faced by those living with severe adult autism realities.  One point emphasized by Kim Oakley is the need for hidden surveillance in ALL rooms of institutions for those living with severe adult autism realities.  Without surveillance there is little way of knowing what happens to a severely autistic adult who dies or is injured under suspicious circumstances.


I commented on August 19, 2007 on a Newsday report of a severely autistic adult woman who was severely beaten by attendants who were only caught after the assaults were captured on video cameras. The Newsday report stated:


"Newsday, August 18, 2007

An autistic resident of a Long Island group home was beaten with a shoe and a wooden coat hanger, slapped in the head and kicked by several employees whose vicious assaults were captured by a hidden video camera, Nassau County police said.

The helpless 50-year-old victim was battered repeatedly at the PLUS Group Home Inc. by at least four employees after one of their co-workers alerted police to possible mistreatment of the residents inside the Uniondale facility, police said.

Group home management then installed the camera inside air conditioning vents at the home, according to Terri Cancilla, executive director of the PLUS Group Home Inc.

...

Authorities said the victim can not speak or convey emotions or pain because of her disease, which is characterized by impaired social interaction."


In my 2007 commentary on the Uniondale facility assaults I made the observation that:


"This poor soul could not speak for herself. And the animals who savaged her knew it. Perhaps video cameras in all areas of institutions with non communicative residents should be mandatory. So that the videos can speak for them when they are subject to abuse."

I agree with Kim Oakley.  Video surveillance should be mandatory in all rooms and areas of facilities providing residential care for persons with severe autism and other communication challenges.  If they were mandatory in California before Van Ingraham died he might be alive today.  

In 2011 Karissa Donkin, a journalism student at St. Thomas University met with me and Conor before addressing these issues head on in a well written piece of journalism: A Place for Conor.  For me, and for my son Conor, this was the autism story of 2011.  It asks a question I asked at a meeting of the Autism Society New Brunswick last year. It asks a question I have raised, with other parents of autistic children, in several meetings with New Brunswick government officials over the past 10 years. It is a question I have asked of the community living bureaucracy that has dominated the New Brunswick Human Rights Commission, the Ombudsman's Office and the Departments of Education, Health and Social Development.  Last year I raised the issue of adult residential care and treatment during the Ombudsman's public consultations. I might as well have been singing to my self in the shower. 

I participated in the center of excellence consultations organized by the Ombudsman's Office  in connection with the  Connect the Dots campaign. It was an orchestrated charade with the same cliches about "community" and "inclusion" and expressed hostility towards "bricks and mortar" centers that have prevented progress on evidence based autism issues for decades in New Brunswick. It was clear from the comments of those at the head table as well as NBACL head Clarence Box who moved to the table I was seated at that there would be no real centers considered during the consultations.

As we move forward in 2012, the need for a decent residential care and treatment system for NB adults with autism disorders remains as it has over the past decades.  The past several decades have been dominated by a community living  bureaucracy  whose ideas were framed decades ago and which has not moved on to address the need for modern evidence based residential care and treatment needed by some people, including my 16 year old severely autistic son.  

With no disrespect intended the fact remains that the community living bureaucracy, including the current occupant of the Ombudsman's office, doesn't have a clue about what is required to move severely autistic adults out of psychiatric hospital and general hospital ward care and into modern residential care and treatment facilities.  They refuse to consider meaningfully any ideas which conflict with their tired community living ideology, an ideology which began around the time my childhood heroes Neil Armstrong and Buzz Aldrin walked on the moon. It is an ideology whose adherents have remained inflexible and dogmatic in their thinking. It is an ideology whose adherents have failed, despite years of the highest level of influence in our government institutions, to help the most severely disabled autistic adults.

New Brunswick has a need for autism specific residential care and treatment facility. Our province has answered the call in early intervention and to some extent in providing autism specific education services in our schools. It has been accomplished despite the determined opposition of those with a near religious belief in community living cliches.  UNB-CEL Autism Intervention and the Stan Cassidy Centre in Fredericton have developed some excellent early and school years intervention services. We have natural living environments in the capital area. There is no excuse for not beginning a serious effort to construct a professional modern living centre for autistic adults in our capital region. None at all.

Karissa Donkin's article, A Place for Conor: