Local wait list still growing for adults with disabilities

Peggy Revell

Local families and advocates are calling on the province to take action as the wait lists for support services for adults with developmental disabilities have hit an all-time high both in Fort Frances and across Ontario.
“Provincial funding announced in last month’s budget for supports and services for people with developmental disabilities is welcome, but it’s not enough to ensure existing programs are stabilized and the needs of families on wait lists are met,” warned Alanna Barr, executive director with Community Living Fort Frances and District, which serves the region from Rainy River east to Lac La Croix First Nation and north to Nestor Falls.
There currently are 53 people on the local agency’s wait list, Barr noted, and nine of those are waiting for 24-hour support.
It’s the highest number their wait list has ever reached.
Meanwhile across the province, some 23,000 people with a developmental disability are on wait lists for services, with 12,000 of those waiting for residential supports, Barr said.
But while these numbers continue to climb, funding has stalled.
“For several years now, the province has asked agencies that support individuals with a developmental disability to do more with little new funding investment in the sector,” Barr explained.
“In 2008/09, the province required that supports and services delivered by the sector be increased without providing any new funding.”
Then last year, Barr said more than $20 million in funding that the province had committed to Community Living agencies was redirected to pay for changes required under new provincial legislation.
“I think the dilemma most agencies have is that the demand is increasing,” she remarked. “It doesn’t really matter where you are in the province.”
“It’s been very hard in terms of the wait list,” echoed Fort Frances resident Michelle George, who has had a family member in need of 24-hour care who has been on the wait list for nine years.
Over the past three years, this family member has been going “back and forth,” spending three days living at an apartment where the support is provided—and then the other four days a week at home with the family.
“That’s very confusing, that’s very hard on them,” George said, stressing the right for a person to have a home—and not have to go back and forth.
“At what point do we see some resolve?” she wondered.
Funding by the province currently is based upon Community Living agencies providing support for a designated number of people under a contract with the province.
If there is a vacancy, that spot can be filled. Otherwise, people are left waiting for the type of support they are in need of, Barr explained.
“You have your budget and you have to work within it,” she said, noting that Community Living is a voluntary agency.
Provincially, it is not mandated to have to provide support—and those over the age of 18 have no “right to access.”
At present, the organization is supporting 90 people across the district, although many are doubled up on the wait list as they receive some assistance while awaiting the complete level of support they are in need of, Barr said.
“Massive” amounts of money are needed to fix the wait list, she noted, but there is no exact total that can be given as “you need to have a budget that fits a person.”
Support simply could be two or three hours of programming a week, or respite support for a family.
It could be helping an individual with transportation, cooking, money management, life skills, and 24/7 support in a home—whatever is needed for them to be as independent as they can be and participate in the community, Barr explained.
“It’s really sad because everybody deserves the support level that they need—but they don’t get that,” said Allan Dustak, a direct support worker with the agency and family advocate.
It’s also important for a continued level of support that can change and adapt according to an individual’s needs over a lifetime, he noted.
It’s an issue they’re seeing as young people transition from using the children’s services, where there are a range of supports, to reaching the age of 18, where they still require support services, Barr said.
“Some individuals just go on the wait list,” she remarked, noting that like anyone else, this is the time when these individuals are transitioning, looking to gain independence, to work, and participate in the community to the full extent of their ability.
At the same time, family members who have been the caretakers are getting older, and less physically able to care for their family member.
“It’s a challenge,” Barr stressed. “It’s a challenge for families, for agencies, and, ultimately, the people they’re supposed to support.”