When the Stan Cassidy Centre Autism team was scheduled to be closed parents of autistic children spoke up loud and clear. We didn't need a professional interpreter with no academic history, who never provided 24/7 parental care for an autistic child speaking on our behalf.
We were not funded in our advocacy by government and we were not worried about lobbying for personal contracts with NB Health or NB Social Development. We spoke up with no conflicts of interest and based on our own actual 24/7 experience with raising autistic children ... and we got the job done.
The October 4 2005 article below is followed by some of the published commentaries of parent autism advocates that played a significant role in getting the job done.
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October 4 2005
Rehab centre to treat autistic kids
STEPHEN MACGILLIVRAY PHOTO The Daily Gleaner
Children with autism will continue to be treated at the Stan Cassidy Centre for Rehabilitation. The board of directors of River Valley Health last week reversed a decision made earlier this year - at the administrative level - to stop treating children with autism who do not have a physical disability. The policy was to take effect in 2006. "We're elated," said Luigi Rocca, president of the Autism Society of New Brunswick. "We weren't at all happy with the original decision," he said.
Autism is a serious neurological disorder that typically appears during the first three years of life and has a profound effect on communication, social interaction and sensory integration. Autism, an incurable condition believed to be genetic in origin, affects about one in 500 individuals worldwide and is four times more common in boys than girls. Intense behavioural therapy has been found to help improve social and learning abilities, but experts say that for most autistic people, the condition continues to have some impact throughout life. The original decision to discontinue treatment of some children with autism was announced in May. At a recent meeting of more than 30 stakeholders from across the province, John McGarry, president and CEO of River Valley Health, apologized for the lack of dialogue that led up to that May announcement.
The Stan Cassidy Centre for Rehabilitation is a tertiary care centre that provides services to children across the province in rehabilitation including speech language pathology and occupational therapy. Diane Morrison, senior vice-president of River Valley Health, said the centre has treated children with autism for many years and built up a level of expertise. "They were looking at their resources and how the resources were being utilized," she said about the initial decision. "Like most services there was more demand than you have the resources to meet." Children with autism represent about 20 per cent of the case load at the centre and required more than 20 per cent of resources to treat, she said. Morrison said it was initially thought that that children with autism could be better served elsewhere, particularly children without a tertiary rehabilitation requirement. If a child with autism did have an accompanying rehabilitation requirement they would still have been seen at the centre, she aid. Morrison said the meeting with stakeholders was positive. Following that meeting, and after further discussion within the organization and at the board table last week, the decision was made to continue the service, she said.
The board motion to continue the service also called for the creation of a provincial working group to develop recommendations that will help ensure the Stan Cassidy Centre's autism services are sustainable and integrated into treatment across the province. Morrison said it was concerns about sustainability that prompted the May announcement. She said if the centre has just one speech language pathologist and one occupational therapist then the service is fragile. "We need to make sure that we can put in place plans for sustainable service," she said. "We are trying to take systemwide approach to this." Morrison declined to comment on whether the regional health authority would need additional funding from the province to make the autism service sustainable. "I don't want to presuppose the recommendations to come out of the working group," she said. Another meeting with stakeholders is planned for Oct. 14.
Rocca said the dispute has highlighted the overall lack of resources allocated to autism in New Brunswick. The Stan Cassidy Centre for Rehabilitation does not have enough resources on its own to deal with autism, he said. Rocca said that stakeholders are pleased that when they complained they were taken seriously by officials at River Valley Health. He said they quickly reversed their decision and did not let it drag on for months. "We are starting a meaningful dialogue," said Rocca. "We will be involve in finding a solution. "We hope we get the same response from the provincial government."
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Dear Minister Robichaud:
It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD.Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.
We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.
I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.
Your prompt attention to this issue would be greatly appreciated.
Sincerely,
Luigi Rocca
President
Autism Society of New Brunswick
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NB Telegraph-Journal | Readers' Forum
As published on page A7 on July 18, 2005
Children with autism have been let down
It has been brought to my attention that services provided to autistic children by the Stan Cassidy Centre for Rehabilitation have been discontinued effective June 21, 2005. I have no knowledge of under what circumstances this decision was made, and am deeply shocked and dismayed.
To further my dismay, no one from the autistic community was consulted or made aware of this decision. Nine years ago, the Stan Cassidy Centre provided my autistic son the benefit of a multi-disciplinary team assessment, recommendations for his early intervention worker, and our family with the tools he needed for neurological rehabilitation in the form of intensive behavioural intervention. Stan Cassidy provided our son with direct therapy every three weeks until he reached the age to move into the Regional Health Authority Paediatric Rehab Team. Since he has been school age he is under the services of the Extra-Mural Program. Stan Cassidy was a vital link to proper interventions for the autistic population.
Stan Cassidy's multi-disciplinary tertiary team travelled the province, into the rural and remote areas providing assessments and recommendations to parents, schools, local paediatric rehab staff, etc. It is a vital and much needed service.
. The number of autistic children on the caseload at Stan Cassidy must have been high, which further perplexes me as to this decision. Dr. Harris is the executive director of Stan Cassidy, and has been involved in the autism community sitting on various committees. I know because I sit on these committees with Dr. Harris.
Again, children with autism have been let down, and a vital link in the chain of services broken. I would like to know what prompted this decision, and full disclosure made to the public and autism community.
DAWN BOWIE
Maugerville
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NB Telegraph-Journal | Readers' Forum
As published on page A7 on July 19, 2005
Centre's expertise valued by autistic community
The following letter was sent to Ron Harris, the director of the Stan Cassidy Centre in Fredericton:
I am a parent of a child on the Autistic Spectrum Disorder. I am deeply distressed to hear Stan Cassidy will no longer accept referrals or serve this population of children. I implore you to reconsider. Your decision to no longer provide services to our autistic children will have a profound and direct impact on the quality of life of our children.
For parents who were fortunate to have some intervention from the Stan Cassidy Pediatric Team, it meant the lives of their children improved to the point where they learned skills to cope within a school environment. It also gave parents the tools to teach skills, thus improving their children's lives at home.
Eliminating this service is a an absolute deal breaker.
Our older children for the most part have no service, and for policy makers within your organization to eliminate such an essential service will only serves to increase the burden on parents who are already stretched to the max.
Please recognize the consequences of your decision. It will be detrimental on the lives of autistic children and their families.
I would like to add, your pediatric team of professionals always gave me hope, encouragement and a direction that would improve the quality of life for my child. Without their guidance and direction, my child would not be where he is today.
LILA BARRY
Miramichi
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Daily Gleaner | Readers' Forum
As published on page C7 on July 19, 2005
Decision on autistic children doesn't add up
This is a copy of a letter sent to the Stan Cassidy Centre for Rehabilitation, pertaining to their change of mandate.
When first I heard of the decision to discontinue services to autistic children, I assumed, giving you the benefit of the doubt, that budgetary constraints had motivated this disastrous and hurtful determination. Now that I have read your press release, in which you rationalize this decision on the basis that the skill sets required to provide services for autistic children are different than those required for typical treatment provided by the centre, I am stunned.
You are discontinuing a vitally important health and education service without ensuring that a replacement model of service delivery is available. You offered the absurd rationale that these services are being discontinued because they are not typically provided, and that it will be difficult to find the people with the skills to provide the service. As someone involved in the autism community, I know you have lost some of those skilled personnel, and some potential personnel, solely because of your decision to discontinue services to autistic persons.Your excuse has become a self-fulfilling prophecy.
You attempt to reassure us that a new model will be developed to replace the existing model for delivery of the services previously provided by the centre. After breaking trust with the autism community, you now want us to trust you when you assert that, somehow, a replacement model will be developed when you have no authority or means to provide such a model, other than the one which you are now discontinuing.
Your re-assurances ring as hollow as the excuse you offered for discontinuing these services.
Harold L. Doherty
Fredericton
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