October - Autism Awareness Month in NB - Adult Autism Care is Long Overdue

In Canada October is Autism Awareness Month

New Brunswick Is An Internationally  Recognized 
Early Autism Treatment Leader: 
BUT Has Nothing For Adults with Severe Autism

October 18, 2017

Premier Brian Gallant

Families & Children Minister Stephen Horsman

Health Minister Benoît Bourque

Dear Premier Gallant and Ministers Horsman and Bourque:

Re: Autism Awareness Month: Adult Autism Treatment and Care

October is Autism Awareness Month in Canada although that is sometimes lost in the Blue Light  celebrations of April n the United States.

I am sure you are all aware that New Brunswick has an early autism intervention program for which we can all be proud.  The NB program resulted from determined parent autism advocacy. It was developed at the UNB-CEL in Fredericton which established a program in both official languages that has been used in Saskatchewan and more recently in France. Conservative and Liberal governments contributed to the implementation and delivery of the early autism services. The Association for Science in Autism Treatment recognized the program as a model for consideration by other provinces and some US states. 

Parent autism advocacy also resulted in the training of approximately 500+ teacher aides/ education aides and some accommodation of autistic students in learning environments appropriate for their severe autism challenges.  Parent autism advocacy also resulted in the reversal of the decision to close the Stan Cassidy Centre Autism Team which provides consultation up to age 16.    

Nothing meaningful has been done though to address the very serious issues facing adults with autism in NB.  …. NOTHING.   In 2010 Professor Emeritus (Psychology) Paul McDonnell articulated the need for an adult autism network comprised of autism specific group homes located in communities around the province and a centre to provide the training and oversight for staff in the group homes.  A further extremely important function would be to provide permanent residential care, treatment and continuing education in a modern setting for those with severe autism challenges.  In a meeting two years ago then Minister of Social Development Rogers in the presence of Department advisers appeared to give careful consideration to a detailed proposal presented by Paul McDonnell and parent autism advocates. 

Since the meeting with Minister Rogers nothing has been done to advance the development proposed.  I ask you again, and will keep asking you, to stop ignoring the needs of adults with autism who can not be provided for in the community facilities that now exist.

I have been a parent autism advocate for more than 18 years plus.  I was pleased with the early autism intervention program developed for autistic children even though the program arrived too late for my severely autistic now 21 year old son to be eligible. 

If your government does not intend to work on and develop the adult autism network please advise.

Sincerely,

Harold L Doherty

Conor’s Dad

Queen Elizabeth II Diamond Jubilee Medal Recipient (Autism Advocacy)

Adult Autism Care: It Is Time for NBers to Stop Hiding from Reality and Develop An Appropriate Autism Centre and Network - Part I

"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." 

-NB Autism Expert Paul McDonnell, September, 2010 CBC Interview, (highlighting added for emphasis - HLD)

There is often a split between  higher functioning persons with autism and persons who require life long care, persons who can not advocate on their own behalf.   and persons who require life long care, persons who can not advocate on their own behalf.  I am the parent of a 21 year old with autism, "profound developmental delay"/intellectual disability. As a young child he was interviewed by someone from one of the community based organizations in NB but they decided they would not work with him ... as was their legal right. The reality though is that some with more severe characteristics require intense, expert care not available generally.  My son is one of those. ... As I age and eventually die he will require a very intense and expert level of care not easily found in the community. 

NB Needs an autism care and treatment network that would accommodate persons with autism in need of different levels of care with homes around the province near families and a centre in Fredericton, near our developing autism expertise, for those with the most severe care requirements. Well meaning people in NB have resisted exactly this type of network while looking the other way when adults with autism are sent out of the province to Spurwink Maine or to our Northern Bordhe split generally on adult care issues exists between higher functioning persons with autism and severely autistic adults who are in Campbellton at the Restigouche Psychiatric Hospital as far as possible from by far the greatest number of NB families.   The Community groups and persons who oppose an autism centre and network modeled on integrated, educational, professionally trained principles have no problem sending our most severely autistic individuals  to the hospital type institution they do despise in Campbellton NB as far away as possible from the vast majority of families who have provided them with care and who love them.

It is time for NBers to stop cowering in fear and yelling "no institutions, no institutions" whenever we discuss the long term care needs of all adult persons with autism.  It is time to take an honest look at the real needs of NBers with adults and build a network and centre integrated into communities, with a focus on education, positive living experiences and individualized curricula with properly trained professionals and staff as close to families as possible around the province of NB.