Adult system sparks ‘chaos, devastation’
Aging parents who battled to find support worry about what the future holds for their two children
Donna Taylor says she could write a survivor’s guide on how to transition a young adult with special needs into the community.
It would be the story of her life over the last few years preparing Joshua, 22, and Naomi, 19, for leaving high school.
When she and her husband Don adopted two infants with Down syndrome and other disabilities, they were determined both would lead fulfilling lives and be involved in their neighbourhoods.
Both kids loved school and activities such as swimming, horseback riding and volunteering, made possible through direct funding they received until age18. But the Taylors didn’t anticipate the “chaos and devastation” of moving into the adult system.
That’s the phrase Taylor used in a letter to the Ontario ombudsman in 2013 after he launched an investigation into the crisis surrounding developmental services for young adults.
Three-and-a-half years later, she has been so preoccupied with “horrendous wait lists” and trying to find quality programs that she’d forgotten the ombudsman’s report was still to come. It will be released Wednesday.
Naomi and Joshua both have limited verbal ability and need constant care and supervision. So Taylor, a former nurse, is at home full time dealing with their health issues, ferrying them to volunteer roles and organizing social activities such as bowling.
She’s thankful they are receiving Passport funding to help cover those costs. But it’s a full-time job finding the right support workers, managing paperwork and budgets and ensuring they have enough activities, she says.
Taylor is 66 and her husband is 72, which means it’s hard for them not to worry about the future. Taylor has heard the stories of children with aging parents having no choice but to move into longterm care facilities. And she can’t imagine her kids plunged into unfamiliar circumstances with people they don’t know.
“I’m not even going that far down the road yet, it’s too painful,” she says.
“We’re going to take it one year at a time for now.”
“We’re going to take it one year at a time for now.” DONNA TAYLOR FULL-TIME CAREGIVER