Human rights hearing told province’s disability support program needlessly punitive and falls short of delivering services it promised to families

RON RYDER
The Guardian

Families of children with autism ripped into the province’s disability support program at a provincial human rights hearing Tuesday, saying the plan discriminates against the disabled families it was set up to assist.

Parents Vic and Colleen Douse and Brad and Dale Wonnacott told a panel chaired by Lorraine Thompson that the DSP is needlessly punitive and falls short of delivering the services it promised to families.

Vic Douse said the screening tools and the income test system set up for claims seem to make it impossible to reach even the DSP theoretical ceiling of $3,000 per month in financial support.

“It’s the halving and the halving and the halving,” he said under questioning from the claimants’ lawyer, Karen Campbell.

Vic Douse said his 13-year-old daughter Jewel is autistic and has been prescribed 40 hours per week of applied behavioural analysis as a therapy. But he said he has been unable to get government to either approve or pay for the therapy prescribed by his daughter’s physician.

“It’s like telling someone that they need 40 chemotherapy treatments, but they’ll only get 20,” he said. “Then you say government will only pay for 10. If you don’t get better it’s not a surprise.”

Colleen Douse said they were faced with a dilemma that saw government willing to pay $10 per hour for a therapist to work with their daughter at home, while the provincial education system was paying $22 per hour for people with the same skills.

The Douses said they initially thought there was no sense in earning extra money since their income was used to reduce Jewel’s DSP benefits. But when even their top payment fell far short of needs, they changed their minds and decided to have Vic work as many overtime hours as possible while the family stopped participating in the DSP.

In all, four families are challenging the DSP and in particular the FIM questionnaire used to determine the type and amount of help provided to a disabled person. FIM, which originally stood for functional independence measure, is a trademarked assessment tool adopted by the provincial Department of Social Services when it began the DSP in 2001.

The test was developed as a tool for rehabilitation nursing.

Parents questioned whether the questionnaire was too focused on issues like physical mobility to be of use in determining support for people whose disabilities are cognitive.

“I’m not saying the DSP may not have helped somebody,” Brad Wonnacott said. “It just doesn’t seem to be helping us or people with autism.”

Dale Wonnacott said she thinks the FIM tool gave an exaggerated reading of the independence of her 10-year-old son, Benjamin.

“The score doesn’t reflect Benjamin as a person with autism at all,” she said. “Yes, he can walk. But he’d walk right out into traffic.”

Lawyer Robert MacNevin, representing the government, told the rights panel the issue to be decided is a legal one. He didn’t question the parents about the personal and financial difficulties of raising and caring for their kids.

Instead, he questioned what involvement they may have had in the development or assessment of the disability support program and what the basis was for questions about the FIM questionnaire.

“Do you have any formal training or education that would allow you to make an assessment of an evaluation tool?” he asked Colleen Douse. “Are you aware of how many assessment tools were assessed by the province before the FIM tool was selected?”

The hearing continues today with parents Carolyn Bateman and Margaret Murphy scheduled to testify.

rryder@theguardian.pe.ca