NB Adult Autism Care - Autism Spectrum Village Proposal

UPDATE:  Dr. Gregory MacDuff 

 Adult Life With Autism Spectrum Disorder

UNB Fredericton Wu Centre

Dr. Greg MacDuff presentation on Adult Life With Autism took place yesterday and it was  excellent.  This parent learned a lot yesterday including many points I plan to use in caring for my adult son with severe autism disorder.  

I know from discussion that many other parents and professionals were also very happy with the days events and the excellent presentation by Dr. MacDuff.  I did note there were a handful of people who promote non evidence based approaches to educating and caring for autistic children and adults and I hope they learned enough to open their minds.  

The excellent presentation by Dr MacDuff continues today with 3 question sessions organized around government, professional service providers and parents.  

The Adult Life With Autism Spectrum Disorder is an excellent example of why UNB-CEL and Fredericton itself have so much to offer in the establishment of an adult autism centre to provide training and oversight of a network of autism group homes around the Province of New Brunswick.  

NB achieved international recognition when it established the early autism intervention program. It is time, it is past time to take that accomplishment to the adult autism level.

UNB Psychology Professor Emeritus Paul McDonnell, clinical psychologist, and mentor to many autism parents in NB is the intellect that triggered the creation of the internationally recognized early autism program in NB. 
    

In a 2010 CBC interview McDonnell drew the attention of the NB public to the need for autism specific adult services.  McDonnell proposed an autism network with group homes in communities around the province organized around an autism centre:

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)

McDonnell repeated the principles of his 2010 CBC interview and elaborated on them in The Proposal for An Autism Spectrum Village, May 14, 2015.  The proposal again reiterated the need for an enhance group home autism network with a centre in Fredericton near the autism expertise that has been developing here:

It is therefore imperative that New Brunswick establishes an Autism Treatment and Residential Centre. The centre should be situated in Fredericton so that it is physically close to regional autism expertise at the UNB-CEL autism program and the Stan Cassidy Centre. The Centre would provide treatment for all autistic adults who are too old for treatment at the Stan Cassidy program and permanent residential care for the most severely autistic some of whom have been sent to the Spurwink Facility in the State of Maine and to the Restigouche Regional Psychiatric Hospital in Campbellton. Autism specific group homes around the province are required with autism trained staff and oversight from the Centre.

 In this sense, the model proposed could be characterized as a “satellite” model in which the centre in Fredericton would be linked directly to a number of satellite homes around the province. Medical issues commonly associated with autism disorders including epilepsy and depression would also be treated in the context of persons suffering from autism and the extra challenges it presents to treating those common co-morbid conditions.

 McDonnell, autism parent advocate Cynthia Bartlett and I all met July 14, 2015 in a meeting with then Social Development Minister Cathy Rogers.  Minister Rogers seemed genuinely interested in the Autism Spectrum proposal and was assisted by several advisers. 

 The optimism faded though when Minister Rogers was replaced by Minister Stephen Horsman who is also the MLA in my home riding of Fredericton North. I requested a meeting with my MLA but he seemed disinterested in any autism proposal and made it clear that he was OK with sending severely autistic adults to the Registigouce Regional Psychiatic in the City of Campbellton a city which is literally on the Northern NB border with Quebec.  In Minister Horsman's "reasoning" (and that of Restigouche MLA Don Arseneault) it was fine to send severely autistic adults to Campbellton far from the large bulk of NB families because some from the North have had to travel south for services.  This mentality was identified by former Liberal Health Minister Mike Murphy in the context of the youth mental health fiasco which was located in Campellton as being a political decision by MLA Donald Arseneault who weilded considerable influence in the Gallant Liberal government. Jobs in Campbellton trumps health and well being of autistic adults including my son Conor who like me is represented by Minister Horsman as our Fredericton North MLA.

Tomorrow will see a full day presentation on adult autism by a distinguished expert from Princeton Dr. Gregory MacDuff. 

Hopefully exposure to intelligent and principled expert information will encourage the Liberal government to establish a network of autism specific group homes with a centre in Fredericton, one which would be both centrally located, reducing to the maximum extent possible travel distance for families and be in close proximity to Fredericton's autism expertise.  

Hopefully. 

 I am not holding my breath but I have to continue to hold out hope for my son Conor and his future well being.