Changes to Delivery of Services for Developmentally Disabled Have Advocates Vexed

“I’m a single mom, so it’s a hard haul,” she said. “When he was two I could restrain him, but I can’t do it by myself anymore. I can’t work because he needs constant supervision. The government has swept us under the rug and forced us to live in poverty. I just don’t get their thinking.”

GUELPH — The McGuinty Liberals are in the midst of transforming services for people with developmental disabilities, but the changes are causing more headaches than benefits, local advocates say, and they worry the new system will amount to cuts to services for this marginalized population.

And services, they say, are already scarce, with long waiting lists for day programs, residential housing, and respite care.

“I get so stressed over the system,” said Donna Christie, a retired special education teacher who maintains contact with the families of some of her former students, and continues to work with the developmentally disabled at Sunrise Therapeutic and the Special Olympics.

“There’s a new system, the DSO (Developmental Services Ontario), and they promote it as being easier to use and more fair. Maybe their intentions are good, but so far it’s not easier, that’s for sure,” she said.

“I’m so darned mad they went and redid the system,” said Lynn Butt, 56, a single mother whose 19-year-old son has autism. “Now I have to pay upfront for services and be reimbursed later? I’m on Ontario Works. How am I going to pay up front?”

The government has made sweeping changes to the way it delivers services to people with developmental disabilities in an effort to be more equitable and to streamline the system. Rather than have many entry points, the newly-formed Developmental Services Ontario is where everyone will begin their journey now, whether for a diagnosis, for services, for programs or for funding.

“It’s a one-window approach, and it should make it easier for clients to navigate the system,” explained Sandy Mangat, spokesperson for the Ministry of Community Services. “It’s a single portal versus a patchwork of services.

“The other part of the transformation is the shift to the direct funding model. It may be confusing to families as we work through this transition period, but the heart of these changes is to be fair, consistent, and that the rules are applied across the board.”

After assessing the needs of an individual, the agency will determine how much funding that individual will receive. The money is to pay a personal service worker and/or their transportation expenses, the per diem rate at a respite facility, or the cost of day programs. Funding is capped at $10,000, although most families receive less than $5,000 a year to cover these costs.

Previously this funding came to families through two funding streams: Special Services At Home and Passport. Now all adult funding goes through Passport and funding for children and youth programs through Special Services At Home.

“The transformation actually started in 2004 or 2005,” explained Jennifer Gleeson, manager of the family support option program at Trellis Mental Health and Development Services. “That’s when community participation support switched to direct funding to families, so they could set up individual programs to help them achieve their personal goals. That is what the traditional Passport funding was used for.”

Historically Trellis has received additional funding to help clients connect with services and handle the invoicing, but by next March Trellis will lose that funding and will have to charge a fee when they provide the service — about 10 per cent of the family’s Passport funding allocation.

Families can do the work themselves and keep their 10 per cent, but they’ll have to pay the worker out-of-pocket and recoup the expense through the regional office of Developmental Services Ontario later.

For Butt, who receives about $3,600 a year to use for relief caregiving for her son, it’s a steep price — the equivalent of three weekends of respite — and her son only qualifies for 12 weekends a year.

“I’m a single mom, so it’s a hard haul,” she said. “When he was two I could restrain him, but I can’t do it by myself anymore. I can’t work because he needs constant supervision. The government has swept us under the rug and forced us to live in poverty. I just don’t get their thinking.”

Christie, the retired special education teacher, said she knows many families in similar circumstances. And it’s much worse when young people turn 21 and age-out of school programs.

“It seemed there were enough day programs through Torchlight and ARC Industries, but those programs now have long waiting lists,” Christie said. “What really bothers me is the random way people get or don’t get services. Some families have to wait for a crisis before they get help.

“We’re failing so many people, and it’s heartbreaking.”

Susan Wahlroth is trying to do something about that.

She and Andrea Kretz, a special-education teacher, and Jason Dudgeon, an educational assistant, are developing a program for high functioning individuals who have aged-out of school programs. It will include things like yoga, garden projects, photography and culinary skills and will help these individuals continue on a path of learning.

Her own son Duncan, 22, has Down syndrome, and while she believes he’ll be able to hold a part-time job one day, he needs more stimulation than he’s currently getting in adult programs.

“It’s frustrating because so many students regress after they leave high school,” Wahlroth said. “We’re designing a program so they can continue to learn new skills. People generally don’t realize how great the need is and how limited the resources are.”

The Community of Hearts Lifelong Learning Centre will open in September with four or five participants. They are starting small but hope to grow the program. Cost will be $30 a day, and it qualifies as a Passport-funded option for families.

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Gleeson said that while the changes are imminent, Trellis can still assist families through the transition.

“I can appreciate that this is anxiety-provoking for families. They will require different documentation and new assessments may be needed so the rules are clear and consistent around eligibility. So we really want to assist families through this,” she said.

“We don’t want anyone to get lost in the shuffle.”

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