At any moment, Daniela Pethick could have a seizure, causing her to lose control of her body.
“It’s very scary. It feels like you’re in space, because you don’t feel like you have any gravity and you need to hold onto someone to feel like you’re secure,” she said.
Accompanied by double vision, loss of speech, an increased heart rate and sometimes temporary loss of consciousness, the experience can last for just a few seconds or almost a minute, and sometimes it happens repeatedly throughout the day.
As a result, Pethick is on a wait list for supportive housing, and after more than 10 years of waiting, she’s decided it’s time to speak up.
“It’s not just because of me. It’s because I like helping people and I understand there are a lot of other people who have worse disabilities than me, and need more accessible help,” she said.
Pethick has been living with epilepsy and seizures since she was 18 months old, which she says was the result of brain swelling suffered after receiving a measles vaccine.
To help mitigate the impacts, she has a device called a vagus nerve stimulator implanted on the left side of her chest, which she can activate if she feels a seizure coming.
Certain medication also helps Pethick to manage the condition, but it comes with side effects that can make her feel tired, slow, depressed and anxious.
In addition, she also lives with a developmental disability which leads to cognitive delays and some speech impairment.
All of that combined means Pethick needs support and relies heavily on her parents for help in her daily life, but she knows that can’t continue forever.
“My parents are getting older and they’re not always going to be there for me,” Pethick said.
That’s why she applied to Developmental Services Ontario (DSO) for help finding supportive housing, like a group home, where someone would be available 24 hours per day to attend to Pethick if she suffered a seizure, provide access to transportation, and help with tasks like grocery shopping, cooking and managing finances.
Despite applying in late 2013, Pethick is still waiting, and while she’s trying to remain optimistic, it can be difficult.
Dealing with the wait
“Sometimes it’s easy to deal with; sometimes it isn’t,” she said. “Sometimes I want to cry. Sometimes I just want a hug. Sometimes I just want to be around people.”
After a recent call to the agency, Pethick said she was told there was nothing they could do to accelerate the process.
Representatives from the provincial Ministry of Children, Community and Social Services, which is responsible for funding supportive housing and DSO said there are currently about 19,000 adults receiving supportive living services from more than 300 community agencies who operate about 2,800 supported group homes in the province.
Published in May 2021, the province’s developmental services reform framework outlines steps for improvement and acknowledges public feedback that "the demand for services is higher than availability," and "long wait times prevent (people) from getting needed services."
That follows from the work of the province’s developmental services housing task force launched in March 2014. In their final report from 2018, the task force described the situation as a “crisis that has been growing steadily more serious for at least twenty years,” and claimed that the number of people on wait lists for supportive housing increased from 12,000 in 2013 to 15,700 in 2017.
To help address the issue, representatives from the ministry say it is investing about $3.4 billion over 2023-24 in the developmental services sector, an increase of $841 million from 2018-19.
“The ministry shares a common vision with people with developmental disabilities, families, and the sector — a vision where people with developmental disabilities are better supported to fully belong in their communities,” the ministry’s media team said via email.
While they didn’t directly answer questions about average wait times or the number of people currently on wait lists, representatives from the ministry said that eligible adults are prioritized based on individual risk and the availability of services.
“This is not a first-come, first-serve system,” the ministry said.
Pethick suspects she may have been too modest when filling out the questionnaire as part of her application.
“I told them all the positive stuff and I didn’t tell them the worst parts, the worst times," she said, noting both her parents work and can’t always be around. "It’s freaky being alone in a house and not knowing if you’re going to have a seizure."
At the local level, Your Support Services Network (YSSN) is the agency that administers services for DSO’s central east region, a coverage area that includes York Region and Simcoe County.
As of Dec. 31, the provincial database shows there are 611 people with developmental disabilities seeking a group living option in Simcoe, YSSN executive director Kimberly Thorn said.
She explained group living is offered by eight agencies in the county, and 12 vacancies were declared between April 1 and Dec. 31, 2023.
“The demand for supportive housing continues to increase every year and the system has not been able to keep pace with the number of people seeking services,” Thorn said via email. “We understand that this can be difficult for families who are in need of services on an immediate basis or who are planning for the future.”
Improved access will depend on both the level of need and funding from the ministry, she said.
Shaping her resolve
This isn’t the first time Pethick has fought against the odds, and she recalls doctors at Toronto’s Hospital for Sick Children suggesting she may not be able to graduate high school.
However, at 29 years old, she’s already overcome that expectation, and went on to attend Mohawk College in Hamilton from 2013 to 2015, and her life experiences so far — both good and bad — have helped shape her resolve.
“It made me strong enough to have compassion for people and understand people’s problems and be a voice for the people,” she said.
It’s not the first time she’s used that voice.
While in college and after returning home she helped advocate for Purple Day in support of people with epilepsy and worked with the town’s accessibility advisory committee on strategies to better accommodate people with disabilities.
For the last year or so, she’s been volunteering at the library as a way to help people and also supported staff by participating in the picket during the 71-day strike last year.
In sharing her story publicly, Pethick is hoping to encourage the province and community groups to work together to provide more supportive housing for those in need.
“I just want to show the normal people that don’t know about these things and bring it out into the community, and tell them: Build now,” she said. “There are a lot of people on the waiting list who need it now.”
Through its “passport program” the ministry also provides funding to individuals via DSO for community services and supports, caregiver services, and supports for primary care givers of an adult with a developmental disability.
Available funding ranges from $5,500 to $44,275 based on an individual’s assessed need and is currently provided to about 60,000 people annually.
For more information about DSO or the passport funding, visit dsontario.ca.
