DUNNVILLE—At 81-years-old, Betty Henderson fears for the day that she can no longer care for her daughter Ronda. Due to significant physical and mental developmental disabilities, Ronda, 56, has required 24/7 care for the entirety of her life.
“I’m very concerned,” said Henderson. “There’s absolutely nobody who can look after her. If something happens to me, what happens to her? Is she going to live in a tent in the park or something?”
Henderson has lived in a state of uncertainty over how much longer she can continue to care for Ronda since 2006.
“At the time, my husband had passed, and I felt I had to make arrangements so there would be someone to look after her. There is nobody in the family that can take her,” said Henderson, noting that while her son lives nearby he is away from home working for much of the day.
Henderson knows the reality for Ronda is a future of 24/7 supervision in a supported living home.
“There’s no way she’d be able to be on her own in an apartment. It’s just not viable,” she said, recalling a funeral for the mother of one of Ronda’s peers. “The girl was just lost, and it hit me – I have to do something.”
Wanting to ensure she would be around to participate in the transition, helping Ronda adjust after a lifetime living together, Henderson put Ronda on the waitlist for supported living in 2006.
“I don’t want to put her into care, but I think it’s the right thing to do for her,” said Henderson. “My greatest fear is that I don’t wake up in the morning…. How many days will it take for somebody to clue in that she’s on her own?”
But 19 years later, the pair is still waiting.
Community Living Haldimand (CLH) CEO Bob Butella said the waitlist issue has compounded over time due to successive governments ignoring it: “There has been almost no expansion of service capacity for the past 12-plus years, despite a Select Committee (all parties) Report in 2014 and an Ombudsman’s Report 2017 strongly suggesting that the waitlist needs to be addressed.”
While Butella noted the government will tout raising funding to ‘record levels’, that doesn’t account for any serious expansion efforts. He noted, “They are including the ODSP increases of 11% since 2022 (now $1,368 monthly for a single person – poverty rate in Ontario of $27,000)” and the 67,000 people receiving Ontario Passport funding (an average of $10,000) to help cover programs, respite care, and similar services.
He said in addition to salary increases related to the pandemic and a base budget increase to agencies in the neighbourhood of 2.5% this year, “There is no new money for expansion.”
Developmental Services Ontario (DSO) is responsible for assessing eligibility and controlling the supportive housing waitlist when a vacancy is declared.
“Names of candidates from the waitlist deemed ‘most in need’ and a likely ‘best fit’ for the spot are presented to the agency for a matching process,” Butella explained. “At this point, I can’t assure anyone that they will get the service/support they’re asking for. This has led to a provincial campaign called #waitingttobelong to ask the government to address the lack of expansion.”
Butella broke down the likely scenario for Ronda should her mom’s worst fear play out: “Ronda will be brought to the agencies who will try to put together an emergency placement plan. The system currently works as a ‘crisis response’ system. Not a planful system as so many families, and agencies, want.”
While Henderson is among the families receiving Passport funding, she receives the minimum allotment of $5,500 for Ronda: “You can only stretch it so far, especially when you’re living out in the country and you’ve got to pay mileage. It eats up the dollars fast.”
Henderson uses the funds to send Ronda to Special Olympics bowling on Saturdays, noting that many of the other programs available are done on a one-to-one basis: “They need their peers. It’s very important to them.”
Butella advised Henderson to contact DSO for a reassessment of Ronda’s needs to potentially increase her Passport funding, and maybe to move her up the waitlist for supportive housing.
Henderson already has this in the works, being no stranger to having to advocate for her daughter’s needs.
“Last year … she had cancer and I had to fight to get a doctor to see her and do a biopsy…. It took over 10 months to get her surgery done that she was in need of,” she shared.
Previous changes stemming from the pandemic also reduced Ronda’s time in CLH programming from four days a week in Cayuga to “approximately three hours” at The HAC in Hagersville.
Butella explained why that CLH programming was removed: “There have been shifts in some rules around agencies operating segregated programming from the Ministry. There has also been shifts in philosophy, and in some cases demand (i.e. many people don’t want to attend congregated programs) that lead to more community inclusion supports than in-house segregated programs. We do offer social opportunities several times a year for people to get together.”
That reduction puts the care requirement back on Henderson, impacting her ability to care for her own needs: “With three hours, you haven’t got time to make an appointment for anything.”
Henderson said the previous program also meant Ronda earned a small income: “It wasn’t a lot of money, but she felt she was doing a job…. Somebody in the government decided they should be out working, earning minimum wage, unsupported. My daughter is basically non-verbal.”
“I try to keep her busy,” added Henderson, noting activities like puzzles, painting, watching hockey, taking out the compost, and bringing in the paper. “That, she figures, is her job.”
In the meantime, Henderson continues to live with the same anxiety and fear that she has known for nearly two decades, and that impacts the families of approximately 52,000 developmentally disabled Ontarians waiting alongside Ronda for the support they need.
