Some people affected by ALS, also known as Lou Gehrig's disease, say the federal government's current compassionate care benefits are insufficient for them.

June is ALS awareness month and on Tuesday, victims and their caregivers are scheduled to meet with MPs to call for changes to those laws, specifically surrounding paid leave to care for terminally ill relatives.

The federal government's compassionate care benefits program allows for six weeks of partially paid leave to care for sick relatives, but a doctor's note is required. To qualify, a doctor has to say the patient has six months left to live, or less.

Gloria Hovey says she wants changes made to the federal government's legislation surrounding compassionate care. (CBC)

Gloria Hovey's husband Wayne was diagnosed with hereditary ALS in February 2009. ALS is a progressive neuromuscular disease in which nerve cells die, leaving muscles paralyzed.

Hovey said her husband died 14 months later.

'I just want help for my kids'

"Every week it was a challenge," Hovey said. "Later, it changed everyday, his condition. We knew what it was going to be like from the beginning because we'd been through it before.

"I just want help for my kids. I want something to happen so that they don't have to fight to get help," she added.

Hovey didn't apply for the six-week benefit because she was able to work from home, because there was no clear timeline in her husband's case, and because six weeks seemed too short, anyway.

"It's not enough, and it's hard to determine when to take it," she said. "It would have been nice to spend 100 per cent of my time with him and not worry about something else."

Lianne Johnston, who works for the ALS Society of Ontario, said caregivers of newborns are given a year off, so the same should apply for people taking care of terminally ill loved ones.

CBC News repeatedly called Human Resources and Skills Development Canada for comment, but a spokesperson said there was a delay because several teams were preparing a response.