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Families working to support children with autism forced to become expert navigators of bureaucracy
BY PETER RUKAVINA
As the parent of a young man on the autism spectrum, as someone who has spent a lot of time talking to families raising children with autism, and as someone with a particular interest in ensuring that adults with autism can thrive as full Island citizens, I was happy to see the introduction, by MLA Sidney MacEwen, of a private members bill, the Autism Secretariat Act, in the Legislative Assembly.
In jurisdiction after jurisdiction that studies issues relating to supporting people with autism and their caregivers, the issue of the need for co-ordinated services inevitably arises.
In Pennsylvania in 2004, "Currently, there is no centralized entity to co-ordinate services and promote co-operation among the various agencies involved with a particular individual. Because of this, gaps and overlaps occur, different agencies may work at cross-purposes, agencies try to pass responsibility to each other, and opportunities for consistency of therapy across settings are missed.”
In Scotland in 2008, "Many adults with autism find that the way local services are structured and organized discriminates against them. This can result in their near exclusion from services, particularly if they have Asperger Syndrome or high-functioning autism.”
And here in P.E.I. in 2009, in the draft report of the Autism Action Group (AAG), "the department-based, or service-based silos are entrenched, and cannot be penetrated by the good will and intent of the AAG participants alone because each department or service applies very different approaches to ASD supports and services.”
Autism is a complex condition that can affect many aspects of an individual’s life; it does not fit neatly into the way we organize government departments.
Families working to support children with autism, already under stress from the extra demands on family life this can entail, are forced to become expert navigators of the bureaucracy; adults with autism, especially once they leave the public school system, are served by a patchwork quilt of supports, with little co-ordination.
The establishment of cabinet-level responsibility for autism that the proposed act calls for has the potential to move us in the right direction, to marshal our existing supports and resources into an integrated network that focuses on the individual and their needs and aspirations. Our autistic brothers and sisters deserve a society that allows them to thrive, not just to survive, and to get us there demands the sort of leadership that this bill calls for.
I urge all members of the Legislative Assembly to consider supporting the bill.
- Peter Rukavina, Charlottetown, is a parent of a young man on the autism spectrum