One win for disabled Londoner highlights struggles for many more – The London Free Press
It’s a happy ending with a harsh moral.
More than a year after Londoner Jin Cha turned to the media and politicians in a desperate attempt to find housing for her severely disabled brother Alex, she can finally rest easy knowing he’s found a home.
But the lesson of the story: it takes an exhaustive and exhausting effort by many people to overcome, one person at a time, the deep cracks in the province’s system for taking care of its most vulnerable adults.
And no one knows yet if those cracks are going to deepen.
“It took a huge toll, I’m not going to lie. I cancelled everything. I cancelled my life,” Jin Cha says of the work to get Alex a home.
“The system is so flawed. That is what so many people rely on and it’s not OK. It’s not right.”
Alex, 50, has cerebral palsy, but was active and mobile until suffering spinal cord and neurological damage after a fall in 2004.
During the next 13 years, Alex suffered more falls and injuries. The family sold their home and moved Alex and his mother into an apartment condo. His sister and her nephew live in the same building, all the family working to take care of him.
The family put him on a waiting list for a bed at Participation House – a non-profit agency helping people with major physical and/or developmental disabilities – and waited.
In Ontario, families and their advocates call it the 50-year wait list, knowing many people with disabilities will get off that list only by dying.
A 2016 Ombudsman report noted there were 9,700 developmentally disabled adults, including those with cerebral palsy, waiting for residential care across the Ontario. They’re living at home with aging adults, or stuck in hospital or long-term care beds, putting pressure on those systems.
As her mother’s age began to show, and she grew worried about her own health and her brother’s, Jin Cha turned to London West New Democrat MPP Peggy Sattler for help.
Sattler took on the cause, and in April 2017, The London Free Press profiled the family’s struggles.
Those struggles only grew after the political and media attention died down, Jin Cha says.
The family had trouble getting consistent home-care help, and the uncertainty of care became unbearable, she says.
“I just lost all hope again. It was a really tough time,” she says, tears coming to her eyes just thinking about it again.
Cha says she had to cancel a long-awaited vacation because she couldn’t risk leaving her mom and Alex alone, without knowing if help would arrive every day as planned.
Alex Cha with his sister Jin Cha and mother Jeong Cha in his new home in London. (Derek Ruttan/The London Free Press)
Alex refused to allow any more media coverage because he believed no one really cared, she says.
But the energetic Cha kept pushing for housing from the Southwest Local Health Integration Network (LHIN) and in summer of 2017 learned a residential space for Alex had been approved.
Participation House began looking for a residence for Alex and another client, just as the housing market began to really heat up in London.
It took until May until the agency could find a suitable home, sign a long-term lease and retrofit it for two disabled adults.
At a gathering in the home Aug. 1, two days after Alex Cha moved in, Jin Cha thanked Sattler and her advocates at Participation House and the South West LHIN.
“We could have gone two ways. We could have gone on the route where our whole family fell apart. We went the other way, and that was only because of the compassion by everyone.”
But at the celebration, Sattler worried about the thousands of other adults and their families waiting for help in Ontario.
Little has improved since her news conference of April 2017, she says.
Before the election, the Liberal government promised $1.8 billion in new funding for adults with development disabilities.
It’s not clear what the Progressive Conservatives’ plans are.
In its July 12 throne speech, the provincial government promised stable funding for health care and increased support to parents of children with autism, but made no mention of support for adults with disabilities.
It took a huge toll, I’m not going to lie. I cancelled everything. I cancelled my life
This past week, the province announced a planned increase to Ontario Disability Support Payments would be cut from three to 1.5 per cent, and that the social assistance system would be remade.
The cut shows little compassion for people with disabilities, Sattler says.
“Clearly under this government it’s not looking too hopeful that the problems are going to go away anytime soon. If the government is not prepared to invest in these kinds of residences, we’re going to continue to see the pressures in our hospital system, (and) long-term care system as people are inappropriately housed because there are no residential options for them.”
Since 2014, the South West LHIN, has funded 18 new “living spaces” for disabled adults, said a spokesperson.
But the plan for the future is unknown, said Carmell Tait, chief operating officer for Participation House. The agency now has 44 beds funded by the LHIN. But there’s a waiting list of 74 people.
Meanwhile, the agency is running on stagnant provincial funding, with a one per cent increase in base funding for operating costs in 2011, but zero increases since.
Tait sees the story of Alex Cha as an encouraging one.
Alex Cha, 48 is lowered to his bed by his mom Jeong Cha, 78 and guided by his sister Jin Cha at their north London condominium. (Mike Hensen/The London Free Press)
“Every time you help a family, you have to see that as a positive.”
But Tait knows only too well that the waiting list of aging parents seeking beds for loved ones with disabilities will continue to grow.
“Baby boomer parents are aging. There are more medically fragile people trying to find housing,” she says. “The demand is increasing.”