In February, an Ontario tribunal ruled in favour of Peterborough resident John Wood after funding for his daughter’s medical needs was cut based on an income cap related to the Assistance for Children with Severe Disabilities (ACSD) benefit. The ACSD program helps parents with extra costs of caring for a child with severe disability – such as travel to doctors and hospitals, wheelchair repairs and assistive devices. The benefit ranges from $25 to $440 per month. John’s daughter Grace, 11 (above), has DiGeorge syndrome, multiple disabilities, and life-threatening heart, lung and airway problems. Extraordinary costs for Grace’s care totalled almost $23,000 in 2009 as a result of multiple trips to Alberta for surgery that wasn’t available in Ontario. I interviewed John about his appeal.
BLOOM: Describe the unusual costs related to Grace’s care.
John Wood: I’m a factory worker, and when I take Grace to Toronto for one hospital appointment I have to take the entire day off and that day’s pay is lost. When we’re going two to three times each month, those expenses add up fast. Grace is on a bipap at night, and she has one mask that’s replaceable each year under the Assistive Devices Program , but the masks don’t last that long. A new one costs $140 and my health insurance only covers a small portion. Next week we’re flying to Alberta for Grace to have an airway surgery not available in Ontario.
BLOOM: When was your funding cut and why?
John Wood: Last year we were told that our funding of $430 a month was being taken away because we made too much money. The current income cap for a family of four is $63,421 – that’s gone up less than 5 per cent in 12 years when inflation has increased 26.2 per cent. The Ministry of Children and Youth Services was well aware of our extraordinary expenses and its decision was cut and dry: no benefit. The first step was to request an internal review. As a result of that, they gave us back $25 a month and a drug benefit card, but I have good insurance at work so the benefit card didn’t help us. I got so angry I said I’m not going to let this go and I filed my appeal. BLOOM: How difficult was it to prepare your appeal?
John Wood: I did it on my own. I asked the Ministry several times for a copy of their guidelines and they wouldn’t supply them. I found the Ontario Disability Support Program Act and read the ACSD section 224/98 very carefully. I based my appeal on the law.
BLOOM: What did you learn about the difference between legislation governing the ACSD benefit and eligibility guidelines set up by the Ministry?
John Wood: Guidelines are bound to law and law is not bound to guidelines. In order to qualify under the ODSP Act, there are four criteria: The child must have a severe disability; reside with the parents; the parents must be primary caregivers; and the parents must have extraordinary expenses. Subsection 3 (1) of the ACSD Regulation 224/98 says that the director shall consider, among other factors, household income. It doesn’t set a ceiling for income in order to be considered eligible. Income is only one consideration in determining eligibility for the benefit and the Act clearly states that all factors must be considered. So income alone does not preclude eligibility.
BLOOM: Has the Ministry taken steps since the ruling to make parents aware that income doesn’t dictate eligibility?
John Wood: No. I met with Minister Laurel Broten two weeks ago and I told her that hundreds of Ontario families are being squeezed out of this program simply because they’re not adjusting the income caps with realistic values. I thought I was making ground, but the next day the Minister’s assistant was quoted in our local paper saying the outcome of the tribunal and my meeting would not result in a review of anything.
BLOOM: What advice would you give families who’ve been turned down for the benefit based on income?
John Wood: It’s a two-step process. Keep the letter that denied the benefit, because it has a file number on it. Request an internal review from the Ministry in writing. You can get the address from their website. State why you believe the denial was wrong and be very specific about why your expenses are extraordinary. If you are again denied the benefit or if you’re given a ridiculously low amount, apply to the Ontario Social Benefits Tribunal for a formal appeal. Once you register with them, you’ll receive a kit to fill out. I strongly advise parents to request a phone hearing because the in-house hearings can take a year or two to be scheduled. I’d be happy to talk with any parent about this. We’ve got to be strong advocates for our children right now. We have to keep our eyes open and read and know what’s going on. I find some parents are reluctant to claim dollars for an expense related to their child’s disability because they feel they’re begging. These are benefits we paid for through our taxes long before our children were born.
BLOOM: How did you feel when you got the result? John Wood: I was extremely pleased. I felt vindicated. Within two weeks the benefit was paid back retroactively.
As part of its ruling in John’s favour, the Ontario Social Benefits Tribunal wrote: "The (income ceiling) chart is a self-imposed guideline and is not law. While an income table may be relevant in some circumstances, the Tribunal is not bound by it and must consider the whole picture. In this case, it is better for the health of the child, the family and society as a whole that the child continues to receive the medical care necessary.” When he has time, John writes about parenting at Dance With My Daughter. Thanks John!