Mothers of disabled adult children gathered at a special event in Halifax on Monday to discuss the barriers they face raising their children full-time and how their own age and health care are beginning to impact their ability to provide the support their children need.
“We always think our children will be home with us forever but reality hits and because of multiple sclerosis, I have days where just simply changing Robin and I’m wiped out, exhausted physically,” said Helen McTague.
The discussion was organized by a group called No More Warehousing.
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The organization is advocating for increased government supports to remove the burden of full-time care from mothers of disabled individuals, especially as they themselves age.
“If I could have the peace of mind of knowing if things get to that point, this is one of our options, or even if that there was an option and I’m at a loss, I don’t know what to do,” McTague said.
McTague will soon be turning 65.
Her daughter, Robin, is 28-years-old and lives with Dravet syndrome, a condition that causes severe seizures on a daily basis.
McTague says the last time she was ill and ended up in the emergency department, her daughter Robin was also hospitalized as there was no one able to care for her.
She, along with many other mothers at the event, feel the government underestimates how many disabled adults are in need of specialized care like residential housing options.
“I don’t think the government is aware of what a huge population there is of people, young adults, that have survived through medical progress and let’s give them a life, let’s give them some independence, let’s give them a place to live their lives independently,” McTague said.
The current provincial budget has money earmarked for increases in support for disabled individuals.
“Over the past two years, the government has invested over $4 million to develop eight new community-based small option homes throughout the province. Additionally, government recently invested $1.5 million in front-end programs,” wrote Shannon Kerr, a spokesperson with the department of community services, in an emailed statement.
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Over the years, many disabled adults say the only option they have available for full-time care requires them to live in nursing homes.
Joanne Larade, 42, is one of them and she says it was her only option.
“You’re living with people twice your age. Dementia everywhere and on my floor there’s no one for me to talk to, just the staff. So, it’s not a solution. We need the government to hear us,” said Larade.
According to the statement from Kerr, moving disabled adults out of institutions isn’t a straightforward process.
“Moving residents into the community is a complex process, where the specific needs of each client must be carefully considered. We are committed to ensuring Disability Support Program clients are safe and successful for the long-term in this transition,” Kerr wrote.
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