Families face financial crisis as provincial funding for adults with developmental disabilities changes
By Charlotte Prong Parkhill
Kitchener Post staff
Like many other teenage girls, Fiona Whiteside, 18, spends her days at school and enjoys activities such as swimming, choir and attending camp.
But Fiona, who has cerebral palsy with both developmental and physical disabilities, needs help to do all those things. And now that she’s 18, the funding needed to hire assistants or provide programs for her is drying up.
“For the last couple of years, we go into our own personal finances for about two months of the year,” Fiona’s mother, Pat, said. “It costs extra to have a disabled child . . . it takes more resources.”
The Whitesides have planned much of their lives around the care of Fiona. Both Pat and her husband Brian are teachers who moved from Toronto to Waterloo Region so they could afford to build a wheelchair accessible home for their family, which includes two other children.
When Fiona was young, Pat quit work and only went back part time after 11 years away from her career.
The Whitesides receive about $6,300 per year through Support Services at Home (SSAH) funding, provided through the Ministry of Community and Social Services.
New funding guidelines that are being fully implemented as of April 1 mean that people who were receiving funding as children must reapply at age 18 and transition to another funding model called Passport.
Because Fiona turned 18 last year in 2012, her funding has been grandfathered in. But Pat said she’s been told it is only guaranteed for one year at a time, leaving her uncertain about the future.
And Fiona no longer qualifies for the free respite care and community programming that is available for those under 18.
“She needs an active life. She needs to be stimulated to be happy,” Pat said. “When she’s content, we’re all content.”
Now retired, Pat said her days are filled with trying to organize a patchwork of care for Fiona, including finding respite care and summer day camps. She’s also joined several organizations doing advocacy work.
Other families are in a much worse situations.
“Some people have to sell their homes,” said Sue Simpson, director of programs and operations at Waterloo Region Family Network. Others end up with one parent quitting work to stay home with their adult child.
Simpson’s work for the WRFN includes helping families navigate the support system. But she also lives it every day. Her son Kevin, 24, also has a developmental disability.
“He’s out and about in the community. He goes to the library, he goes swimming, he plays basketball. So we use our funding for his support worker,” she said.
Simpson said Kevin qualifies for $23,000 in Passport funding and $8,000 in SSAH funding every year. In addition, the family spends another $20,000 of their own.
“It’s a very critical situation, because the cost of caring for our children all along has been fairly extensive, and now we’re faced with uncertainty and it’s really worrisome for people,” she said.
“It’s very hard for those families (that are not grandfathered in). They’re getting cut off everything until they go through a new assessment, and then they know there will be a waitlist, and they don’t know how long that will be.”
According to the Toronto Star, figures from last fall indicate there were 3,700 adults on the waitlist for Passport funds and almost 8,600 waiting for SSAH funding. Community and Social Services spends about $143 million a year on these types of supports.
The stories that Kitchener citizens Cameron Dearlove and Subeer Bhandari were hearing from local families prompted them to start an online petition.
“As I researched the issue, I was shocked to hear about the enormous waiting lists and gaps in service that have existed for years before this change exacerbated the situation,” Dearlove said.
Starting the petition was one way to help families who are too overwhelmed and exhausted to advocate for themselves, he said.
“In only one week and without media attention, the petition has generated over 2,200 signatures, but more importantly, it’s become a space where people can leave messages about the significant challenges they are facing.”
Pat and Brian are already looking ahead to the next steps in Fiona’s life. In the future, they hope to move out of their home and into a smaller place, leaving the accessible house for Fiona. They hope she can share the space with other adults who require supports, and the caregivers who would assist them.
But creating that kind of group home would also require financial assistance from the province.
“I wish we could all be independently wealthy, but we need to take care of our more vulnerable as a society,” Pat said.