For months, Ann Marie McColl has been trying to move her daughter, who has complex medical needs, into a full-time care home. But last week, the family’s situation became more urgent.
McColl, who is a single mom, was diagnosed with breast cancer last Tuesday and will have to undergo surgery and radiation. Since she is her daughter’s only caregiver, she’s desperate to ensure that the 20-year-old will have someone to look after her.
“Now more than ever, I need to know that she’s going to be OK, because if [my cancer has] spread, then where is my daughter going to go? The unknown is so scary,” McColl said through tears.
“If my health is not in a good space, then obviously [my daughter] is stuck, she won’t have anybody.”
The family says its been waiting since March to get approval from the Ministry of Children, Community and Social Services for funding that will allow McColl’s daughter to move into a home that provides around the clock care.
McColl says their first application was sent in just before the pandemic began.
WATCH: McColl talks about her worries for her daughter
McColl says they have been waiting more than three months to get a response and are frustrated that they can’t even get a status update on their application. She says she worries about her daughter getting cared for while she undergoes cancer treatment.
McColl says her daughter has multiple mental health and developmental issues, including autism, attention-deficit hyperactivity disorder (ADHD) and post-traumatic stress disorder (PTSD) from an incident that happened when she was younger.
Most recently, she says her daughter was diagnosed with Addison’s Disease.
The illness, according to John Hopkins Medicine, impacts the hormone cortisol which helps break down fats, proteins and carbohydrates in the body. It also controls blood pressure and affects how the immune system functions.
She says her daughter often forgets to take her medication and needs someone to provide her with 24.7 care.
But despite filing multiple applications to the government, McColl says she has yet to hear back or know if their application is being reviewed.
Government hands out available supports based on risk
Since finding out her diagnosis, McColl says she has had Sarnia-Lambton member of provincial parliament Bob Bailey send a letter up to the ministry urging them to prioritize her case.
In an email to CBC News, the Ministry of Children, Community and Social Services (MCCSS) said that people “determined most at risk are prioritized for available resources.”
Last year, it said the government allocated $2.1 billion dollars towards support people with developmental disabilities — an increase of nearly $500 million from 2018/2019.
The ministry didn’t say what was behind the long wait for service or how many people are waiting for supports.
It did say that each situation is “reviewed on an individual basis” and that only those deemed to be “most at risk” are given priority for resources.
In a situation where someone urgently needs supports, the ministry said people can go to their local Developmental Services Ontario (DSO) office to provide more immediate supports.
People can wait decades for service: Advocates
For the last decade, McColl says she has relied on Community Living Sarnia to give her a break from her caretaking duties. The organization would receive the funding from the ministry to then provide McColl’s daughter with housing and care.
The umbrella branch, Community Living Ontario told CBC News that people with disabilities can sometimes wait decades for service.
“The funding which provides access to those resources is totally discretionary, at the discretion of the ministry, to people who are identified as eligible, their support needs are measured and then they wait for funding based on their position on a priority list,” said Community Living Ontario’s CEO Chris Beesley.
“So that can be decades long if we’re talking about residential supports, depending on where you live and what the demand is in your region, you can be waiting literally decades.”
When asked why there can be such a long delay, Beesley said it’s because “we as a society don’t value those supports enough that everyone would get them. In other words they’re not mandated…”
Without continuous investment to match the demand and having this group seen as a priority, Beesley said people will continue to wait.
Advocacy group Ontario Disability Coalition echoed what Beesley said.
The group’s volunteer director of media relations Anthony Frisina said it’s “hurtful” that the government forces people in need of supports to wait.
“The need and support from the government is just not there for people with disabilities … people with disabilities are essentially a burden, [they are] being treated as a liability rather than an asset,” said Frisina.
“All of these steps [to get services] really take time and devalue the importance of people with disabilities because our quality of life is at a standstill because we’re not being treated with respect by not giving us what we need to enhance the quality of life that we like everybody else deserves to live.”
In 2021, the government launched a long-term reform plan for developmental services called the Journey to Belonging. It says it hopes they can improve their service delivery and become a more “person-centred, responsive system that will better address individuals’ needs and goals.”
But McColl doesn’t have decades and she’s tired of waiting.
“Now more than ever, I’m still worried about her compared to myself and I always will, that’s what parents do,” she said.
“You’re just really left hanging and sadly it’s not just me, it’s my daughter that is just in limbo.”
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