More administrative barriers block access to special services for autistic children

Brandon and Benjamin Ennis

Ed: The Common Sense Revolution of 1995 in Ontario instituted a series of administrative hurdles for those requesting social services. PEI was quick to adopt many of those reforms which cut services despite indications demand was rising.

The administrative restriction discussed here is local assessment. If assessment is a criteria for autism supports and if the government controls the number of local assessment persons, then it can cut the number of children eligible for help. Parents are thwarted if they get valid assessments from experts who are not licensed by the Province. See Demystifying the Boundaries of Public Law: Policy, Discretion and Social Welfare by Professor Lorne Sossin Associate Dean of Law University of Toronto.

Here is one mother’s plea for help in a bureaucratic system designed to resist helping children with special needs.

April Ennis
PEI Preschool Autism Services
August 20, 2008

Well as some of you already know, preschool children on PEI have access to an Autism Assessment Team. I have heard accounts from families that the current waitlist for assessments is approx 11-12 months long. So that being said, what do you do while you wait?

Many families have no option but to wait. Some families are being told by the PEI Government that they (Government) will not recognize an autism diagnosis preformed out of province or by anyone other then this single assessment team. Krista MacGillivray and Aaron Larivee were not willing to wait the 11-12 months for Julian’s assessment on PEI so they took him to the Behaviour Institute in Toronto in May 2008 for an assessment. Their concerns were valid and Julian was diagnosed with Autism.

Krista then comes back to the Island and begins to navigate through the maze of information that the PEI Government gives her upon her return. She calls Ms. Sarah Henry and the Disability Support Program Office to inquire about the process of getting help now that they have a confirmed diagnosis. She was told that she is the first family to have a diagnosis off Island. Wrong. There have been families move here from away who had their child diagnosed with autism in another province. Then there was the challenge of the assessment itself by the Preschool IBI Service because it was not performed by the PEI Autism Assessment Team.

My own son Benjamin waited 10 months to have an assessment. He was diagnosed in December 2006 and then waited another 10 months for therapy. Some children even age out of the Preschool IBI Service before they get off the waitlist and enter grade one with no IBI therapy.

Krista and Aaron decided that they were not going to sit back and wait for the Government’s Preschool IBI Service. They have recruited and hired their own staff to work one on one with Julian. The sad part of this story is that the Government will not release the funding to her for the one on one staff because Julian is on the waitlist and not currently in the Preschool IBI Service. This has a Human Rights Complaint written all over it. Again who made them GOD and the only game in town. Stop thinking about the BUDGET and start thinking about the needs of the CHILD. If the Provincial Government can not provide therapy for a child, then it is in the best interests of the child and family to provide funding to contract an external agency. Krista is very lucky to have Tara Wenn for a friend. She has gone above and beyond the definition of a friend. She is an angel. With the Island Bike Tour that Tara completed last weekend, Julian and his family will have access to much needed support and therapy now while they continue to sit on the waitlist.

Now back to the assessments. Why is the PEI Government so close-minded that they are the only professionals who can assess this disorder? Don’t they realize that the Early Years are the most important years of a child’s life? Why won’t they fund private assessments for families to increase the Early Intervention window of opportunity and also reduce the waitlist on PEI. If a dedicated assessment team was created then maybe the Government could also assess school age children as well. The assessment team is made up of Dr. Nadine Dewolfe, Dr. Bigsby and Dr. Bethune. They also have busy caseloads on top of the assessments that they perform. The last time I spoke with a member of this team, approx 2 assessments were scheduled each month for a total of 24 assessments per year. This may have changed since then.

This year the Miriam Foundation released the Canadian Best Practice Guidelinesfor Screening, Assessment and Diagnosis of Autism Spectrum Disorders in Young Children. If these Best Practices are followed across Canada, then why would our Government question the validity of an out of province diagnosis? Honestly, what is the problem here? Please explain.

Maybe a public health screening program could be developed to reduce the amount of children who are referred to the Autism Assessment Team. Perhaps that would lead to increased demand of referrals because children will not be falling through the cracks like they are now.

Without a Provincial Autism Strategy in place or even written guidelines or policies regarding therapy, it is hard for a family to get the same answer from Government. With Government making up the rules as they go along, families continue to be stressed and try to cope with living with autism 24/7.

If only I could get enough families on board to file a Class Action Suit against the Government. Would they begin to listen then?

Regardless of what some so-called professionals claim. Autism is an epidemic and is not going away.