Showing posts with label New Brunswick. Show all posts

Will New Brunswick Ever Act To Provide Adult Autism Residential Care?



The Campbellton Based Restigouche Psychiatric Hospital
 is the Only NB Based Residential Care Option for Severely 
Autistic Adults in New Brunswick

June 22, 2013

David Alward, Premier's Council on Status of Disabled Persons 
Hugh J Flemming, Minister of Health 
Madeline Dube, Minister of Social Development 
Dorothy Shephard, Minister of Healthy and Inclusive Communities 

Dear Premier Alward and Honourable Ministers:

Re: Residential Care and Treatment for NB`s Autistic Youth and Adults

I am the father of a 17 year old son with severe autism, developmental delays and epileptic seizures.  If his mother and I were to perish in an accident tomorrow my last thoughts would probably be filled with the knowledge that New Brunswick lacks anything resembling adequate residential care and treatment facilities for youths with severe autism and related disorders.  In that regard nothing has changed since the attached 2005 Toronto Star article, in which I am quoted,  concerning the youth who was housed on the grounds of the Miramichi youth correctional facility solely because he was severely autistic.  Shortly thereafter, in part at least because of Toronto media attention, he was moved to the Spurwink facility in Maine. 

As our son ages into adulthood we, his parents, will likely grow feebler and ultimately will die. No adult care facilities for severely autistic adults who require permanent residential care and treatment exist in New Brunswick.  I have worked on this issue over the past decade and met on several occasions during the Lord and Graham government eras with Ministers and even with former Premier Graham.  Even before the Miramichi youth situation arose I advocated with other parents to move an autistic adult out of the Saint John Centracare facility.  I have visited Centracare on more than one occasion and I have also been given a tour by the operators of the Campbellton psychiatric hospital where some autistic adults live out there lives.

With that lengthy advocacy involvement on adult autism care, and lack of government response,  I did not honestly expect this administration, which repeats community and inclusion cliches in many government and official statements, and even pays for a new "community" government department, to actually take action on the issue of adult autism care and treatment.  I say this in the interests of candor not confrontation.  

Despite my skepticism about your philosophically driven approach to government I still have to hope, in the best interests of my severely autistic son and others, that you will, as the Lord and Graham governments did on early autism intervention, autism trained education assistants and reversal of the decision to close the Stan Cassidy tertiary care autism team, look realistically at the issues of adult autism care.  I ask you to take an evidence based approach to adult autism care issues. I ask you to take action.  I ask you to do something about the problem.

In that regard I refer you, once again, to an interview with  New Brunswick autism expert Dr. Paul McDonnell, UNB professor emeritus (psychology) and clinical psychologist, in 2010 in which Dr. McDonnell commented on the need for an enhanced adult residential care network:

Autism services needed for N.B. adults

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes. "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."

The professor, who has spent 20 years studying children who have autistic spectrum disorders, said New Brunswick could look to the programs being implemented in the United States where local governments have funded facilities that provide independent living options for people with disabilities. 

These facilities can be expensive, but McDonnell said the costs can be even higher in terms of the "human costs" if these reforms are not implemented. "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," he said. 

Enhanced network 

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership. The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"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," he writes. "The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

The 2005 Toronto Star Article follows. It demonstrates clearly how long these autism youth and adult problems have been festering in New Brunswick. Please take steps now to address these issues that torment so many with autism and their families in New Brunswick.

Respectfully,


Harold L Doherty
Fredericton, New Brunswick

cc. Brian Gallant, Leader of the Official Opposition Liberal Party of NB
     Dominic Cardy, Leader, New Democratic Party of New Brunswick
     David Coon, Leader, Green Party of New Brunswick
     Facing Autism in New Brunswick
     Media

-----------------------------------------------------------------------------------------


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.``

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New Brunswick Queen Elizabeth II Diamond Jubilee Medal Autism Advocate Recipients: Some Missing Names


I am not spurning the recognition nor arguing with the list of autism advocates recognized by the Autism Society Canada in partnership with the Governor General of Canada with Queen Elizabeth II Diamond Jubilee Medals.  I do not seek medals of any kind or financial reward for my autism advocacy, I seek better treatment, better services, better lives for my son and others for whom autism is a serious disorder that limits their daily functioning (DSM5) and limits their lives. But it is nice to be recommended by the Autism Society Canada which is also itself comprised of autism advocates.  I have to point out though a curious anomaly that occurred with the New Brunswick recipients ... three men and no women were named despite the important role of so many women in NB autism advocacy.  Also one person with Aspergers who contributed here in New Brunswick, and in Senator Munson's autism proceedings, was also left off the list. 

This might be just a question of numbers, with three allotted for NB,  but the reality is that in New Brunswick far more women than men have been involved in public autism advocacy and many of them have played very important roles in bringing New Brunswick international recognition for its autism services and programs (even though more progress is still needed). 

I am listing the following names of women in New Brunswick who I know advocated publicly and with great result.  More names could be added for sure but these are some that I know first hand are  deserving of recognition for their efforts.   Personally I did not seek the same goals as some of those listed  but they were all persistent, effective autism advocates.  In alphabetical order (by last name):

1. Lila Barry
2. Nancy Blanchette
3. Dawn Bowie
4. Heather Chamberlain
5. Karen Hammel
6. Marsha Manuel
7. Debi McDonald
8. Darlene Pugsley
9. Linda Richard
10. Charlotte Rocca
11. Shirley Smallwood
12. Pamela Weaver

In addition to the omission of women from NB's list of recognized autism advocates it would be just plain wrong to ignore the very important efforts and contribution of a person with Aspergers who overcome some of his own personal challenges to speak publicly in front of parents' meetings, sat on the ASNB Board of Directors and was recognized and quoted in Senator Munson's autism report Pay Now or Pay Later:

 (…) if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

Jason Oldford, Fredericton,
New Brunswick (12:32)

I am sure it was difficult for the Autism Society Canada people who had to pick the names of autism advocates across Canada to receive medals.    I simply want to highlight the many women, and Jason Oldford a gentleman "on the autism spectrum", who also made very large contributions to autism progress in New Brunswick. 

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Conor's Fredericton 2012 - Part II

The Autism Society New Brunswick met on several occasions with senior civil servants during the administration of successive provincial governments to advocate for a modern residential care facility and system. The concept was to have a  facility located in Fredericton because of its central location and proximity to the autism expertise of  UNB, UNB-CEL and the Stan Cassidy Centre. The centre would provide an alternative to the general psychiatric hospital facilities at Centracare in Saint John and at the Regional Hospital in Campbellton.  The professional advisers at the centre could then provide services on as needed basis to group homes situated in local communities around the province for those with more moderate impairment levels.  

I have personally suggested that an additional reason for locating the central residential care and treatment facility in Fredericton  is Fredericton's outstanding natural environment.  So far, no luck. So far, immobility of thought and action have prevailed.  The ideological rigidity of the current Alward government  further preclude any development as described above and on the CBC web site by Clinical Psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell.  The years long frustration though will not prevent me from continuing to advocate and do not prevent our family from enjoying the natural wonder of Fredericton.



































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Conor's Fredericton 2012 - Part I

Moved back to New Brunswick from Burlington (I commuted each day to Toronto (Eaton Centre) and back) in 1997. Conor was 1 year old at the time and has since grown up in The Green City aka Fredericton. I can't imagine what life would have been like with 4-5 hours commuting each day, time I would not have spent with my family. I don't know what that would have meant for Conor's development and enjoyment of life. I know I have loved being back in Fredericton and I believe Conor has also benefited from the natural environment of "Freddy Beach".




































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