Tuesday, June 25, 2013

Canada Loses an Autism Champion: Andy Scott Passed This Morning

Andy Scott With A Megaphone Supporting Autism Cause with Andrew Kavchak

Canada has lost an autism champion with the passing this morning of former Fredericton MP Andy Scott.  In a telephone conversation with a friend and fellow autism advocate elsewhere in Canada I once suggested the person contact their federal Member of Parliament.  I was informed that had already been done but there would be a wait before the MP could be seen.  There was some apparent disbelief when I mentioned that I could literally walk across the street to the office of our then MP Andy Scott and if he was in he  would probably see me or any other visitor.  

Andy met with representatives of the Autism Society NB on several occasions and actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  The motion was essentially a commitment in principle with no obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  He continued to advocate for autism as demonstrated in his June 5, 2007 statement in House of Commons:


[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians.

On a previous blog commentary about Andy I had referenced the National Autism Strategy and quoted from Tali Folkins 2003 Telegraph Journal article:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Andy Scott fought on behalf of autistic persons in Canada.  He did not achieve all the goals he wanted by any means but he did what was possible in the time he had. Autistic Canadians have lost a champion today.  

Saturday, June 22, 2013

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.


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


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

Monday, June 17, 2013

Conor Recovery ... For Dad ... Means Walking On The Trail Again

We have been very happy with the excellent care Conor received after his adverse drug reaction. Everyone involved, from our family doctor who saw us very quickly after our concerns arose, immediately advised cutting back on Conor's meds and was at the ICU and pediatric wards as part of his treatment team to the doctors, nurses, technicians, physiotherapists and all staff at the emergency, ICU and pediatric ward teams. All were terrific in ensuring Conor's recovery. Everybody was top notch and we are grateful for their service to our son. 

Each day of progress brought fresh signs and while some work remains overall his progress has been great. This afternoon he and I walked the trail to the Superstore for an OJ treat and return home. The Run Jump Fly boy has not returned ... yet ... but Conor kept a brisk walking pace and Dad was very hard pressed to keep up ... another great sign of Conor's recovery progress.

In the top picture below the white building with yellow trim in the center of the photo is the hospital, the DECH, where Conor was treated a few weeks ago. 
 A long time ago in a universe far, far away.

Saturday, June 08, 2013

Extremely Grateful

The Intensive Care Unit of the Dr. Everett Chalmers Hospital in Fredericton made a difference for our family.  They saved our son Conor's life after he suffered an adverse reaction to new anti seizure medication.  They gave our son back to us. For that we are, as the CBC caption underneath the audio of my interview in support of the ICU campaign to raise funds for new monitoring equipment put it ... extremely grateful. 

As we understood it Conor's muscles were breaking down and releasing proteins that were very dangerous to his kidneys. The ICU team were monitoring him constantly while flushing the meds out of his system, taking blood samples and other tests and examinations and starting him on the road to recovery.  

Conor spent 6 days in the ICU with his mother beside him where she slept on a cot for the  entire stay.   During those six days the ICU doctors and nurses were reading his vital information in the room he was in and at the large desk area outside the patients' room.  This monitoring equipment is 10 years old and needs replacement.  If you can help the ICU team save lives   please do so by contributing at the Chalmers Foundation

Audiotape of my interview by CBC's Terry Seguin yesterday in support of the campaign to raise funds for new monitoring equipment for the Chalmers' ICU:

Conor at the Chalmers Hospital's Intensive Care Unit 
In the left of the photo above you can see some of the 10 year old 
monitoring equipment that the ICU team used to save Conor's life.

Conor home and happy after his first day back at the swimming pool as part
of his school recreation activities. We asked his school assistant to take him only in to the shallow end but Conor had none of that and went to the deep end, swimming, jumping off the diving board and going up and down the large slide.