October is Autism Awareness Month in Canada - Time for Action on Adult Autism Care

OCTOBER IS AUTISM AWARENESS MONTH IN CANADA

It is time for action on adult autism care. Join us at the NB Legislature on October 22 at 10 am,

October is October Awareness Month in Canada. A more accurate title is October Inaction Month since nothing of significance has been done to help persons with autism in many years and nothing of significance has been done to help severely autistic youth and adults. This year we will make an effort to dent the conciousness of decision makers, and trigger a burst of conscience, with information demonstrations on October 22 and 29 starting at 10 am at the NB legislature.

YOU can come out and make a difference for autistic youths and adults! We have had enough of cruel and inhumane treatment of severely autistic adults in NB. We don't send them to locations on jail properties as we once did as reported 11 years ago in this Toronto Star article set out below, or to out of province treatment facilities. Nor should we send them to our northern border, to the psychiatric hospital in Campbellton far from most families who are restricted in their ability to travel between 10-14 hours there and back to see their family member on each visit.

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital. No other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

"We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.

Autistic Adults Denied Humane Care in NB - Demonstration at the NB Legislature in Fredericton is October 22 at 10 am.

Above: My son Conor, now 20 with severe autism and related challenges. 

Below :Video by an old friend Charles LeBlanc who helped us  when we advocated for early autism intervention. 

Yesterday Charles caught me on the sidewalk with questions about our adult autism care demonstration planned for October 22 10 am at the NB Legislature grounds.

Adult Autism Care - What is Needed: "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."

Paul McDonnell, CBC Analysis, September 2010

Evidence Based Autism Advocacy In Canada - It Started in British Columbia

I took this photo in Vancouver 3 years ago while attending a legal conference. I post it now as a thank you to the many parents in British Columbia, including the recently departed Michael Lewis, who kick started, and continued, the fight for evidence based autism treatment and services in Canada. Many younger parents across Canada may not be aware of your incredible contributions to the lives of their children. This older dad is aware of that contribution and I will not forget.

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