FACE - Parent Autism Advocacy in New Brunswick - We Got Things Done

Shuffling through some boxes of documents today and came across a FACE wall poster. As Dawn Bowie said last December "we accomplished a lot". We weren't receiving funding from the Province of New Brunswick and were not restricted by government policy. We addressed the needs of children with early autism intervention; autism trained school aides and reversal of the decision to close the Stan Cassidy autism team. You probably won't see any mention of us in the Autism Connections Fredericton Library or in any ACF reports or Executive Director speeches. We didn't advocate for a centre or salaries for ouselves. We fought directly for evidence based services and treatments for autistic children, students, youth and adults. I am proud of what we did and what WE accomplished and I thank all parents who were involved. If anyone is a former FACE member please feel free to respond with a comment and your name.

Conor's Family Lesson for the Minister of "Families" and Children

In the photos above Conor is showing the love he has enjoyed and shared with his family including his brother Brandon at a young age on the swings in the centre, his late Nanny, Kay, and his Mom and Dad.  For Conor family is important, very important  The NB autism experts and parent advocates who advocated for and developed the internationally recognized early autism intervention program, introduced autism training for education aides and resource teachers in our schools and reversed the decision to close the Stan Cassidy Centre Autism Team that provides consultation to autistic youth up to the age of 18 recognized the importance of family in developing principles for the establishment of an autism network for adults with autism.  Unfortunately the current Minister of Families and Children as it is now called has demonstrated no understanding at all of the importance of family to persons with autism in NB including my son Conor. 

Under the intellectual guidance and leadership of NB autism expert Paul McDonnell Ph. D. a network with a centre based in Fredericton, was proposed with autism specific group homes around the province. Fredericton is the most centrally located of our major municipalities and the location of the autism expertise that has been developed in Fredericton and which Minister Horsman also appears not to be aware of. He appears unaware of the advantages of a centre in Fredericton where NB autism expertise currently resides.  The centre would provide a permanent residence for those with severe autism and autism research and oversight to autism specific group homes around the province including in the Northern riding of Donald Arseneault. 

In my discussion with Minister Horsman I was not happy; to the contrary I was admittedly upset and annoyed that the Minister of Families and Children was not willing to consider the network proposal which is in his government's possession a network which would continue the autism services success NB has developed under the leadership of Premiers Lord and Graham. When discussing a Fredericton based centre Minister Horsman did not think it was a big deal that adults with severe autism would spend their lives in the Restigouche Psychiatric Hospital in Campbellton located on our Nothern border with Quebec as far as possible from most families located in the south.  He didn't think it was a big deal when he was a police officer to drive from Fredericton to Campbellton on occasion.  The Families Minister did not seem to realize that families would like to maintain regular contact with their loved ones. When he did comment about the travel burden imposed on families he seemed to be throwing the large numbers of autistic adults and families in the south under the bus by suggesting that families in the north would not like to travel to the south. It is my understanding from discussion with others in the autism community that the Minister of Families still holds that ill informed, harmful view of the challenges facing families and adults with severe autism disorders.

The Minister's comments do not reflect any understanding of the autism network proposal advanced in principle by Professor Emeritus (Pyschology) Paul McDonnell in his 2010 CBC interview with Dan McHardie and developed further and presented to Minister Horsman's predecessor Cathy Rogers.  In particular he does not seem to understand that the Fredericton based autism expertise does not exist in Campbellton.  He does not seem to understand that the central location would mean less hardship for a far greater number of  families located in the south.  He does not seem to understand that the autism specific group homes would provide residence with autism trained staff in locations around the province and in close proximity to families. The centre would also provide the oversight needed and consultation needed for all NBers with autism including those autistic adults capable of living in apartments with assistance.  Nothing the Minister of Families has said seems to indicate awareness of these principles. 

An infuriating aspect of the Minister's blank stare look at adult autism care and treatment is the failure to recognize NB's accomplishments in early autism services and in providing school based autism services.  This is not a construction company or a department store on the verge of going out of business. It is not a wonky geo-lottery system. It is an extension of proven evidence based approaches to provision of autism services that has made NB a leader in the provision of autism services ... except at the adult level.

Most of all I am disgusted that the so called Minister of Families is so lacking in compassion for the vast numbers of adults with moderate and severe autism who will have to live out their lives so far from families.  Stephen Horsman may be the Minister of Families in name but he doesn't show it in word or deed. 

If Minister Horsman wants a lesson in family values and the importance of family to persons with autism disorders he can look at the pictures above and learn from Conor and the family that loves him.

Adults with Severe Autism and Related Disorders are Invisible to NB Government

In New Brunswick adults, like my son Conor, adults with severe autism, intellectual disability (40-50% of persons with autism) and epilepsy (20-40% of persons with autism) do not share in our supposedly inclusive community.  They are largely invisible, as in the images on the right of my son below,  to government,  politicians and civil servants. They are not seen as the wonderful human beings that are loved by family as is my son, who would benefit from frequent family contact when they can no longer be cared for 24/7 at home.

There are general group homes and individualized apartment arrangements with some supervision for those who are higher functioning.  As severity increases the likelihood of life spent in the Restigouche Regional Psychiatric Hospital in Campbellton on our northern border with Quebec increases.  In the past 2 persons with severe autism challenges were sent out of the country to Spurwink Maine for treatment for a number of years at $2-300,000 per person per year. Some have lived in general hospital wards. 

Some of our politicians enjoy photo op walks with young autistic children and cutting the cake at events at autism community centres that provide no treatment or care.  They show little interest in providing the long term, in some cases permanent, residential care and treatment facilities that adults with autism will need.

In a conversation with the new Minister of Child and Family Services,  or Social Development or Families and Children or whatever they are calling their Department today (they seem to spend more time thinking up new names for their department then addressing needs of adult autistic persons in our province) he seemed to think  Restigouche Psychiatric Hospital is all that is needed to fulfill their needs.  He didn't seem to think that it's location many hours drive from most NB families was a big deal. In any event that  was some kind of justice for those in the North who travel further south for various reasons.  And in a complete confession of ignorance of autism realities particularly severe autism realities, he didn't think autism required any specific treatments or accommodations. The Minister doesn't see the challenges of severely autistic adults.  For him, my son and other severely autistic adults are invisible.

As the parent of a 20 year old severely challenged autistic son and a long time public autism advocate for services such as early intervention, autism trained school aides and resource teachers and reinstatement of the Stan Cassidy autism service,  I beg to differ with Minister Horsman. But he needn't accept my word on it being a mere parent who has lived with autism 24/7 for 20 years.  He can review the principles espoused by NB autism expert Paul McDonnell a Professor Emeritus (Psychology) and Clinical Psychologist who articulated the need over 6 years ago for an autism network.

McDonnell,  in a CBC interview and analysis over 6 years ago, stated that an autism center that could provide long term, permanent care for those with severe autism and oversight to autism specific group homes around the province was needed to address the needs of autistic adults with varying levels of severity:

“Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or  out of province.

“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.

“If they’re placed far away from their families,  that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”

McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.

“They should have stimulating recreational, educational programs. That is absolutely essential.

“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”

 NB has been developing increasing expertise in centrally located Fredericton.  It is time to get it done and time to find some political leadership that will take an interest in the real challenges of autistic adults.

New Brunswick needs an adult autism center ... yesterday