Monday, February 20, 2017

No Autism Care Progress in 12 Years in New Brunswick ... the Inclusive, Community Province

The Toronto Star article below was published in October, 2005 and points out the desperate conditions for NB youth and adults with severe autism disorders 11+ years ago. The letter following the article addressed to Shawn Graham published in the Daily Gleaner in May of 2007 showed there was little if any improvement by 2007. The reality is there has been no change since then despite submissions to the PNB government by representatives of the autism community calling for an autism network with an autism centre located in Fredericton near NB's autism expertise with autism specific group homes located near families  in communities around the province.  As an autism advocate and as a lawyer I have been involved in proceedings which have seen autistic youth and adults sent to Campbellton, far from families  to the Restigouche Psychiatric Hospital located in Liberal MLA Donald Arseneault's riding. The PNB likes to consult various  allegedly community focused groups to support the generic group home system, lacking autism focus or expertise, while ignoring the autism specific submissions made to our learned (sarcasm intended) government officials. The "network" which the PNB consults has not advocated evidence based approaches to autism services in NB and in fact some of them even opposed the early autism intervention program fought for by autism parents and professionals, a program which earned NB international recognition.  

A cynic might think that our governments and our cabinet ministers are happy to take credit for the early autism program fought for by autism parents, including yours truly, or posing for photo ops on autism day walks, or cutting the cake at autism related events.  In fairness though the Department of Family and Community Services mentioned in the 2005 Toronto Star article have been very busy ... busy changing its name.  The Department changed its name to the Department of Social Development and most recently changed it again, to the Department of Families and Children to emphasize once again its important role in providing services to families ... unless of course they are families with severely autistic youth and adults in which case our far northern border in Campbellton "out of sight out of mind" as stated in the letter below is the only option. Apparently cabinet ministers are not as keen about photo ops for autism events when they relate to severely autistic adults needing permanent autism specific  residential care. 






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. "


....

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007

Appeared on page C7

This is a letter to Premier Shawn Graham.


I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher's aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.


I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.


Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.


Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government's lack of direction when it comes to older autistic children.


My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.


I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.


I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.


Stephen Robbins
Woodstock, N.B."

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