Considering 11-year-old Grace Wood has undergone several life saving procedures since birth and still struggles with numerous health challenges on a daily basis, it’s a miracle she’s made it this far.

At seven days, doctors performed major airway reconstruction. When she was four months old, a G-Tube was implanted in her stomach. At fourteen months, she had her first open heart surgery, followed by a tracheotomy a month later that lasted for three years. After the tracheotomy was removed, she underwent numerous heart catheterization procedures at the Hospital for Sick Children in Toronto.

In 2002, doctors told the Wood family that they couldn’t continue with the heart catheterizations because her remaining arteries were being damaged. Undeterred, John Wood, Grace’s father, found a surgeon at Stanford University Medical Centre that had pioneered a procedure that Grace needed. So Wood and his daughter took a train to California, where Grace’s first major open heart surgery was performed in 2003 followed by a second operation five months later.

Later this year, they’ll head to Edmonton for another valve replacement.

Grace was born with DiGeorge syndrome, a rare congenital disease whose symptoms vary greatly between individuals but commonly include a history of recurrent infection, heart defects, and characteristic facial features. In Grace’s case, severe heart and lung complications have been her most difficult challenges.

However, with the proper treatment of heart defects, immune system disorders, and other health problems, the vast majority of children with DiGeorge syndrome will survive and grow into adulthood. These children will generally need extra help throughout school and will need long term care for their individual health needs.

In September, Grace will enter grade 5. Quite an accomplishment for a child who doctors never expected to walk, talk, feed herself or be toilet trained. She proved them all wrong.

Until recently, Grace’s family received financial assistance from the Ontario government to help with the extraordinary costs of raising a severely disabled child. Under the Assistance for Children with Severe Disabilities (ACSD) program, they received $410 per month and a drug card to help with the extraordinary costs related to Grace’s disability.

Earlier this year, however, Wood was informed that he no longer qualified for assistance because his annual income exceeded the $62,641 cap.

That wasn’t the first time.

Shortly after Grace was born, a social worker at the hospital told Wood that she hoped he had private health insurance because based on the benefit criteria for numerous programs, it was unlikely he would qualify for anything. Four months later, after Grace was released from Sick Kids hospital, the Special Agreements officer informed the Wood family that they didn’t qualify for the ACDS program.

Their income was too high. At the time, the annual income cap (established in 1997) for a family of four was $60,000.

Two years later, when the Wood family finally qualified for benefits, Grace’s $2,000 a month special diet was now covered by the drug benefit card. In subsequent years, they managed to re-qualify based on extraordinary expenses that reduced the family income below the $60,000 cap.

Grace needs special clothing and breathing masks that cost $150 each. Wood runs an oxygen concentrator 18 hours a day. That’s not cheap on hydro. The house needs to remain very cool because it makes it easier for Grace to breathe. That’s not cheap on hydro either.

Without a private health care plan through his employer, Wood would have to foot the bill for all her drugs. One medication costs $1600 a month.

In April, Wood was told that the family was being cut off the ACDS program, without any discussion of extraordinary expenses or Grace’s condition.

“It became very clear in my mind that what happened was that a directive was sent from the Ministry likely to his particular worker that indicated that where in the past she has been able to use all of the criteria – not only the cap on income but also the special circumstances of Grace’s health herself – as well as the extraordinary costs as a way to figure out whether or not they should be eligible,” said NDP leader Andrea Horwath. “The message came down from the government that the only thing to consider from here on in is the income cap.”

“It was at that point that I got very angry,” said John Wood, at a press conference Wednesday in the Queen’s Park media studio in Toronto. “The criteria for the benefit were being so battered around and used, I often wondered how anybody qualified.”

Given that the income cap has risen only $2,641 in the last twelve years, more and more families are being excluded from the benefit as incomes rise with the rate of inflation.

By bringing this issue into the spotlight, Wood is hoping that Minister of Children and Youth Services Deb Matthews will adjust the income cap for inflation and apply the criteria fairly to the families in Ontario that need the benefit. He’s made a similar plea in the past to Janet Ecker and John Baird, when the Progressive Conservatives were in power.

“It’s time for the McGuinty government to honour their responsibility to children like Grace and for other children around the province,” said Horwath. “Programs need to be put into place to actually help families.”

“So many parents that have disabled children don’t have the fight in them any longer,” said Wood. “We’re quite happy to put our heads down for twenty minutes rest at the end of the day and let someone else take over.”

Or simply let it slide. It takes a lot of energy to raise a severely disabled child. Often you won’t hear the parents voice a concern. It’s hard enough for them to get through the day without fighting the government at the same time.

Right now, Wood’s application for benefits is under an internal review. If Wood isn’t satisfied with the outcome, then he’ll take it to a social tribunal. But he’s also prepared to take the issue to the Ontario Human Rights Commission to fight for all the families in Ontario who should be receiving the benefit.

And what happens to Grace when she turns 18?

“I don’t even want to think about that,” said Wood. “I already worry about me not being here and who’s going to take care of her.”

 

 

 

John Bonnar

John Bonnar is an independent journalist producing print, photo, video and audio stories about social justice issues in and around Toronto.