Thirty years.
That’s how long a mother in Brantford, Ont. was told it could take for her disabled daughter to receive the support she needs.
Nicole Callander worries for the 24-year-old and all others who find themselves in the same situation.
“They are literally a crisis away from being homeless,” she told CTV News. “There’s no housing, there’s no jobs. Really, there’s no purpose for Kaitlin right now.”
Her daughter, Kaitlin Coghlin, has developmental and learning challenges due to Williams Syndrome. Those with the genetic condition also often exhibit remarkable verbal and social skills, as well as a love of music.
Coghlin cannot read or write but she can get by with help from her mother and technology.
“She’s come a long way to where she can now probably be alone for a couple of hours,” Callander said.
That was not the case about 10 years ago when technology was much less advanced.
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“She still can’t cook her own meals,” her mother explained. “I still help with hygiene and stuff and do her laundry.”
Callander wonders what will happen when she is no longer around. She said she worries about where her daughter will live and who will be able to care for her.
Seeking support
Cristin Ladner, the executive director of Community Living Brant, said parents like Callander often end up on very long waitlists.
“[They] can be anywhere from, I would say, 10 years to… we’ve had people that have been waiting on the list for upwards of 30 years.”
Ladner explained that the only way a person gets off the waitlist is if they have a “crisis.”
“A crisis would be if parents are passing away, if there is some illness in the family or if parents just can’t cope anymore.”
Sometimes their clients only need short-term support.
“A lot of the services that we provide, not just 24-hour support, but just even a couple of hours a week are sometimes all the family needs in order to avoid going into those crisis periods.”
According to Ladner, there are currently 52,000 people with a developmental disability waiting for services in Ontario. Of those, he said, 28,000 need some form of supported living services.
But even when they make it off the waitlist, their options may be limited.
“If there is a spot that does become available for them and it happens to be miles away from where they live, families who are at that point of burnout, take the first opportunity that comes their way,” Ladner said.
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Lack of funding
Community Living Ontario, which oversees 123 local agencies including Community Living Brant, ran a public awareness campaign last year called “#5toSurvive.”
“Organizations across the province, we all banded together, and we went on a campaign for #5toSurvive, asking for an increase of 5 per cent,” Ladner explained. “The government gave us 3.2 [per cent] which was incredibly helpful. But again, when we said five to survive, we meant it.”
He said over the last three decades, support organizations have only received a 7 per cent funding increase. “When you think about what prices were in 1995 versus what they are now, [it’s] obviously significantly different than just 7 per cent of an increase.”
Ladner added that a number of Community Living chapters are projecting deficits in the near future.
“Organizations are struggling,” he said, adding that “families are burnt out” waiting for proper support.
In an email to CTV News, Ontario’s Ministry of Children, Community and Social Services (MCCSS) explained that between 2024 and 2025 they will be providing a $3.5 billion investment into “developmental services.”
When asked about the #5toSurvive campaign, MCCSS only replied: “The 2024 Budget also invested $310 million over three years for community organizations. From that funding, approximately $90 million was allocated to the developmental services sector.”
They added: “Our funding supports a range of programs for adults with developmental disabilities, including residential supports and the Passport Program, which helps adults with a developmental disability participate in their communities and live as independently as possible. The Passport Program also gives caregivers the opportunity for respite, and we increased the minimum amount that individuals can receive to $5,500 a year. Some individuals may also receive additional direct funding of up to $44,275.”
‘I am everything for her’
Callander, meantime, wants to see her daughter thrive.
“Being home with me I don’t think she’s pushing herself to her full potential,” she told CTV News.
Callander works from home to accommodate Coghlin’s needs but admits that, while working, the iPad has become her daughter’s go-to entertainment.
“I like the iPad,” Coghlin confirmed.
“But are you bored?” her mom asked.
“Sometimes,” she answered.
“You’re bored because it’s day in and day out of the same thing, right?” Callander suggested.
“Over and over,” Coghlin agreed.
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Callander said she has limited access to day programs and, until her daughter can get into a group or assisted living home, all she really wants is for Coghlin to feel independent and a sense of accomplishment.
“I run a gift shop out of my basement so she can have a job,” Callander explained.
The pair spend their weekends at vendor shows, Callander added, “so she can actually be out in the community and not isolated from it.”
“I am her job, I am her friend, I am her housing. I am everything for her.”
Not only is it difficult for people with disabilities to find supportive living and other services, but it is also challenging finding employment.
Coghlin said, if she could, she would like to “work at fast food” to help support herself.