By Chet Greason
On Tuesday, November 18, The National on CBC began airing a two-part story by Ionna Roumeliotis entitled Forever Child, (part two, which aired the next night, was called Desperate Choices). It chronicled two Sarnia-area families that are facing a growing problem prevalent across Canada: Aging parents still caring for adult children with disabilities.
At the core of this problem is a lack of funding; one family, both parents of retirement age, have no choice but to continue caring for their grown son who requires 24-hour supervision. The other featured family, the father of which has been diagnosed with terminal cancer, were forced to technically “abandon” their severely disabled daughter at a respite care facility. In both cases, pleas for government funding to assist in support and care went unheeded, with all levels explaining the money simply isn’t there.
Is this a problem confined to the Sarnia area? Marg McLean, director of St. Marys and Area Community Living, doesn’t think so. “A lot more people need support than there is funding available,” she says. She further explains that 77 people are waiting for some kind of residential or home support in Perth County, while 59 people are waiting for day or participation support, and another 26 people are waiting for respite support.
“Some are in their 50s and still living with their parents,” she says, adding that situations such as these can often lead to very difficult family dynamics, especially as parents age.
Locally, this is the case with Linda and her brother Steve (last names withheld). Steve went into an institution when he was nine years old, rejoining society at 24. From then on, he’s lived with his mom and dad, his health deteriorating due to severe seizures to the point where he is now, at age 50, confined to a wheelchair. Steve’s mother eventually developed Alzheimer’s as well, leaving dad, who’s in his 70s, to care for both mom and son.
“We applied for social services at home and were approved for $10,000 a year at the time,” explains sister Linda. However, due to the difficulty in finding a social worker that proved a good fit, the money went mostly unused for a year, at which point the family was told that if they didn’t use the money, they would lose it. “Dad wasn’t about to lie, or to use it on something Steve didn’t need,” says Linda. Hence, Steve saw a reduction in his funding down to $3,500. It’s never been re-evaluated.
Since then, Steve and Linda’s mother has passed away, and Steve has moved into an accessible apartment. “We took a chance, knowing there wasn’t enough support money,” says Linda. Her brother has enough funding for supported living to cover two weeks a month. For the other two weeks, Steve’s Dad and other immediate family, including Linda’s 16-year-old daughter, give Steve the support he needs: meals, personal hygiene, and nights spent monitoring him while sleeping on a futon in Steve’s apartment. “It’s better than nothing,” says Linda.
The fact that Linda makes her living in the support services industry has not made things easier; or, if they have, Linda can’t imagine what the process would be like for someone without her connections. “With my background, you’d think it’d be easier than most people, but I find it all very daunting,” she says.
This is the case for Jim, currently 64 and still caring for his 35-year old son with special needs. Jim admits the stress of their current living situation is putting strain on himself, his wife, and his son.
“He’s dependent on us for everything,” he explains. His son, Dave, also experiences frequent seizures and requires constant care and supervision; however, schoolmates of his have told Dave horror stories about living in group homes, so Dave has decided against living in such an arrangement.
“We’re working on funding for his own place, but vacancies really only become available when someone dies,” says Jim. “It’s not (St. Marys) Community Living who’s holding up the process, either,” he adds, but rather a lack of funding.
“I’m 64, and some day, mom and dad aren’t going to be around anymore,” he says, noting that it could be years before funding becomes available to support Dave. Meanwhile, Jim says the family is wearing down day by day. “It’s not a good setting,” he says.
Often, situations work out based on simply being at the right place at the right time. This is what happened with Eleanor and her daughter. Faced with daunting line-ups for care in the GTA, Eleanor relocated herself and her daughter Emily to St. Marys. Emily has spina bifida, is non-verbal, and confined to a wheelchair.
After an initial plan was mapped out with Community Living, Emily soon found herself living in her own apartment, complete with the support she needs and her own pet. “Here, they gear the programs for the clients...Never once was there any suggestion that she would have to fit into someone else’s living situation.”
However, Eleanor concedes, “Emily might still be waiting for a spot if there hadn’t been a death.”
Requests for additional funding have been met with little response. Linda says her family have written numerous letters to both MPs, MPPs, and the Ontario Premier. “The response is always ‘Sorry to hear it, but there’s no funding,’” she says.
“Although the current level of funding seems like a lot, its not as much as in other sectors,” notes Marg McLean. “Families are just not as organized as in other sectors... There’s simply a smaller number of people in total being affected.”
There may be a light on the horizon, though. On Nov. 29, the office of the Ontario Ombudsman announced that they will be investigating the province’s response to people with special needs in crisis situations, including perceived inadequate oversight of the money transferred to agencies providing services. They’re asking anyone with information to contact them immediately (info@ombudsman. on.ca.)
To Jim, this is the key to ensuring there is money available for people who need it. “We’re in a deficit. They won’t find the money until there’s a lot of pressure on them to find it,” he says.