A diving accident at the age of 14 left Brian Parker paralyzed from the chest down.
Now, at 49, he doesn’t have his full-time caregiver until last week, after his 68-year-old mother was diagnosed with breast cancer.
“I don’t know how to return the favor,” Parker says, crying. “Now she is alone and I have to fight for myself.”
Parker’s brother has stepped in, but only for a while, as he juggles other family needs and his job.
Parker, who has a degree in computer programming, has been unable to work and is on welfare.
After his mother was no longer able to care for him, he turned to the government for help, but says he was told there was only one option.
“Throwing myself into a hospital bed, bed by bed,” he says, “That’s not right, it’s not right at all.”
Parker doesn’t want to live in a hospital, but in her own apartment, with the help of a full-time caregiver.
You can’t afford private care and you need more hours of care than programs like VON can provide.
“It sounds all too familiar,” says disability advocate Vicky Levack.
That’s because a decade ago, they gave you a similar option.
At age 21, Levack was sent to live in a long-term care home alongside the elderly.
Since then, he has fought for people with disabilities in Nova Scotia to have the choice to live where they want and get the care they need.
“We say we’re going to be an accessible Nova Scotia by 2030, which means having everyone on the same playing field, regardless of disability status,” he says, “and this shows me they haven’t done enough.”
In 2019, the province’s Human Rights Commission Board of Inquiry found that the province discriminated against three people with disabilities, finding that they were living in a psychiatric hospital unnecessarily.
On Sunday, the Department of Community Services released a statement in response to Parker’s story.
“We know the important role of family members and caregivers … and that any change in that support system would be difficult,” writes the department’s communications adviser, Christine Deveau. “While the Department of Community Services cannot comment on individual cases, there are several options available through the disability support program, depending on the level of support someone needs.”
The statement cites the Independent Living Support Program, which was de-capped earlier this year to allow more applicants to qualify.
Deveau adds that the Department of Aging and Long-Term Care can also help.
But Parker says she’s been told there are no beds in long-term care, though she wouldn’t want to live in such an institution, even if there were.
“For me, a nursing home is a place you go to before you die,” he says, “and I can’t do that. I am 49 years old. It will kill me in the end.”
Before his situation changed, Parker says he planned to go back to college to get a law degree. Now, he’s not sure what to do and thinks the province should have more options for Nova Scotians in similar situations.
“There should be immediate emergency funds there to deal with drastic situations,” he says.