Thursday, July 30, 2015

A Positive Adult Autism Meeting with Social Development Minister Cathy Rogers



Minister of Social Development Cathy Rogers
Photo Source: NB Liberal Site 



July 14, 2015 Meeting with Social Development Minister Cathy Rogers
at 551 King Street, Photo by Harold L Doherty


On July 14, together with autism advocate Cynthia Bartlett and Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell I met with Social Development Minister Cathy Rogers and 3 of her advisers.  The meeting had been requested by Minister Rogers when it became clear in the Legislature gallery that I, and presumably some others in the gallery, were unhappy with the government’s response to opposition MLA Ernie Steeves motion on adult autism care.  Bathurst MLA Brian Kenny, with whom I had spoken during our small demonstration outside the Legislature earlier that day was talking to Minister Rogers and pointing up at me.  A short time later Mr. Kenny came up to the visitors’ gallery and asked me to come out to the hall where Minister Rogers asked me if we could schedule a meeting to which I agreed.  I was thankful for the opportunity to address the adult autism care issues which have never been addressed in any coherent, systematic and well informed manner.  I was very pleased that Cynthia and Paul were available to attend at the meeting and share their experience and expertise.

The principle around which our discussion took place was the same principle on which those of us who advocated as parents for early autism intervention in NB  relied on in our successful advocacy efforts – the need for an evidence based approach. Fortunately the Minister and her advisers seemed to be in agreement with this principle at outset and needed no convincing.  That may not sound like much today but it was not always an easy sell in our early advocacy efforts in a province where clich├ęs about community and inclusion are often sold as solutions to the most challenging disorders and deficits.

The evidence with respect to adult autism care in NB is clear: we do not have a plan to address in a humane, professional, reliant manner the needs of autistic adults, particularly those at the severe end of the spectrum, in New Brunswick.  We have housed New Brunswick ‘s autistic adults in a variety of hospital settings from general hospital wards to the Restigouche  Regional Psychiatric Hospital in Campbellton far from the bulk of NB’s population, far from most families.  We have housed a NB autistic youth on the grounds of the Miramichi Correctional Facility only because no other location had the resources to provide proper care and safety.  That youth and at least one young man were sent to the Spurwink facility in Maine for several years at a cost to the Province of approximately $300,000 per year per person.

What we discussed was the proposal developed largely by Paul McDonnel with input from parent advocates including Dawn Bowie, Lila Barry, Cynthia Bartlett and me and enunciated in principle in his 2010 CBC internet interview and analysis:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)

"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. The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

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 can do much, much better.

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 resident 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."

There was also discussion of some of the serious issues that often accompany autism including intellectual disability, seizures, self injury, wandering and the need for surveillance of some autistic adults to ensure their safety.

The Minister did not make any clear commitments, at least as far as I understood our discussion.  She did say that other departments would have to included in the discussion, a point on which we agreed.
My assessment is that the meeting was positive and that the Minister sees autism care as a need that really has to be addressed in New Brunswick.


It is up to parents though, as it always has been, to keep these needs in the forefront if we want decent places for our children to live as adult; places where they can live  happy lives, according to their level of need,  with proper health care, education and security.


Sunday, July 12, 2015

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.

Wednesday, July 01, 2015

Dr. Glen Davies at Medicare for Autism Now! Rally June 27 2015



 Dr. Glenn Davies at the Medicare for Autism Now! rally June 27 2015 discusses evidence in support of behavioural intervention in treating autism, the lack of autism coverage under Canadian Medicare compared to the US Medicaid state to state mandate and the example of Wisconsin which is far ahead of all Canadian jurisdictions in providing treatment for autism.

Monday, June 29, 2015

Conor After Another Seizure


Conor has been on  a good run for the previous 7-10 days and today was pretty much the same until 6:15 this evening when we heard a loud thump uupstairs.  His mom ran upstairs and screamed for help when she saw him convulsing on the floor with thick fluids oozing out of his mouth.  We had to keep him on his side with his head away from any corners or hard objects.   This was Conor's 4th grand mal seizure since Christmas. Conor's convulsions did not appear to last too long compared to some previous seizures ..  approximately 2 minutes.  Stilll 2 minutes of your son in convulsions is enough to scare you all over again. Conor also recovered quite well. The picture above was taken 45 minutes after the seizure and while he was still a bit groggy he was regaining alertness, speech and walking ability.  He is now sleeping soundly exhausted from another seizure.  I just checked and his head was on the side on his pillow  and he was breathing loudly but clearly.  Dad is starting to relax ... a little bit.