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Old 11-15-2008, 06:56 AM   #1
Join Date: May 2000
Posts: 15,496
Default Lightfoot at fundraiser

Saving a service that gives families a break
The donors Vito and Sandra Bigioni

November 15, 2008

The Gift: Raising $1-million

The Cause: Toronto's Bloorview Kids Rehab.

The Reason: To fund respite programs for families with disabled children

A few months after their daughter Emily was born, Vito and Sandra Bigioni got some crushing news - Emily had a brain disorder called pachygyria. The condition is similar to cerebral palsy and it left her unable to speak, using a wheelchair and requiring constant care.

The news "was devastating," recalled Mr. Bigioni, who runs a Toronto construction company. "We were in shock at the beginning for sure."

A doctor referred the family to the Bloorview Kids Rehab, a hospital that specializes in rehabilitation programs for children.

"Bloorview became an essential part of our life and always has been," Mr. Bigioni said. "It is an amazing place."

The hospital not only provided medical care for Emily, but also offered her a variety of educational, recreational and therapeutic programs. Officials from the centre even helped the Bigionis modify their home to make it more accessible for Emily.

Emily is now 13 years old and attends a special Grade 8 program in a regular school. But the family still relies on the hospital for many programs, including a variety of camps and day programs that allow Emily to participate in different activities while her family gets a break from the constant caring.

Two years ago, Mr. Bigioni learned that the hospital might have to end one camp because of a lack of funding. "I couldn't swallow this one," Mr. Bigioni said. "I can't get that type of respite service anywhere."

Last year he started a $1-million fundraising campaign for the service. He has raised $230,000 so far and held an event this week featuring Gordon Lightfoot, whose children once attended a Bloorview camp. Mr. Bigioni said that while raising money is tough in the current economic climate, he has set a five-year target. He added that most people have a hard time saying no once they learn about Bloorview.

The hospital "isn't just about taking care of the kids, it's about taking care of the families too," he said.


Nov 15, 2008 04:30 AM
Helen Henderson

Kids with disabilities and their families continue to suffer needlessly from shortfalls in provincial programs and services that are supposed to help them cope at home.

"Waiting lists are growing at an unprecedented rate for the Special Services At Home program," says parent advocate Janis Jaffe-White, who notes the subject will be on the agenda at a meeting scheduled for Monday between Ontario's Ministry of Community and Social Services and its family advisory committee.

Special Services At Home provides funding so families can purchase services and supports for adults with developmental disabilities, and children with physical disabilities and/or developmental issues.

The average amount given is just over $3,000 a year, although some families coping with complex situations need help with costs of more than $20,000 a year, says, Alison Ouellette, co-chair of the Special Services at Home Provincial Coalition. That would include money to participate in accessible community activities and also for support workers to help while family caregivers take a break for a few hours a week.

A spokesperson for Community and Social Services Minister Madeleine Meilleur points out that funding for Special Services at Home increased to $98.1 million for this year from $74.2 million in 2003. But that still doesn't begin to meet the need.

This year, 28,637 families got approval for services. This past June 30, the official wait list stood at 17,105 but, because different regions of the province work on their own time frames, the number could be higher. And the situation shows every sign of getting worse as cutbacks and underfunding continue to starve other community resources, says Jaffe-White, who is co-ordinator of the Toronto Family Network.

The new developmental services Act "enshrines waiting lists," she says. "It all has a very negative effect on families' ability to cope. It puts them in isolation."

Among respite programs in jeopardy this year was a highly specialized one offered by Bloorview Kids Rehab, which serves children with complex disabilities. Bloorview is part of the provincially-funded Respite Cluster, a group of GTA agencies on the government's website. The cluster prioritizes and makes funding allocations every two years.

Last year, Bloorview didn't receive all the money it requested. It looked as if its March break and weekend respite programs would bite the dust, but then an enterprising parent – Vito Bigioni – started a campaign with his wife Sandra to raise $1 million to save the programs.

The Bigionis' 13-year-old daughter, Emily, has a congenital brain condition similar to cerebral palsy. She does not walk or talk. Sandra quit her job teaching kids with special needs to care for Emily, who is now in an inclusive Grade 8 class at St. Patrick's Catholic School in Markham. The family, which also includes 9-year-old Max, gets only three hours a week from the Special Services At Home program.

"Now that Emily's a teenager, it's more difficult to find programs she enjoys," says Vito, a partner in Dagmar Construction Inc. "She loves the ones at Bloorview. We couldn't live without them."

This week, the Bigionis staged a fundraising reception featuring a performance by Gordon Lightfoot, whose daughter once volunteered at Bloorview. They have raised more than $200,000, including donations through Vito's own page on Bloorview's website But there's still a way to go to reach the $1-million target.

This year's five-day March break respite program, which costs families $260, was saved. And the November-to-March weekend program, which offered respite from 1 p.m. to 7 p.m. Saturday or Sunday for $15, will start up again, says Bigioni.

But parents will have to pay more, he says, and that will be tough for families that already face many extra costs coping with disabilities, not to mention shortfalls in provincial programs and services.
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