Mother pleads for help after home care cuts
TheStar.com – healthzone.ca – Mother pleads for help after home care cuts
May 01, 2008. Rob Ferguson
Exhausted from attending to a 5-year-old daughter with a rare disease who needs 24-hour care, Sonia Commisso came to the seat of government yesterday looking for help.
She didn’t get it.
But Commisso left Queen’s Park knowing that she finally got the attention of Health Minister George Smitherman, whose office hasn’t replied to a February letter she sent pleading for assistance.
The Mississauga mom is frustrated that taxpayer-funded home care for Alessia has been cut to 15 hours a week from 54. With a husband and son who also have serious medical conditions, she says she can’t cope any more.
“If I get sick, there’s no one in my family who can take care of Alessia like I can,” said Commisso, 36.
The home care reduction came in January after doctors removed a nasal feeding tube the girl had used for two years. The Mississauga-Halton Community Care Access Centre, a government agency that provides home care in her area, ruled 15 hours is the maximum the family is entitled to under the new circumstances. Commisso uses the care two overnights a week to get a proper night’s sleep.
She needs it.
Her husband, Tony, has multiple sclerosis and uses a wheelchair. Her son, Cosimo, 14, has a seizure disorder and a learning disability. Alessia is also in a wheelchair with Leigh’s Disease, a mitochondrial disorder that leaves her heart working at just 30 per cent capacity and limits her mobility.
It’s the same rare disease that killed Commisso’s other daughter, Jesse, at age 2 from heart failure. That was seven years ago.
Alessia does not have the energy or inclination to feed herself and does not have enough muscle control to properly roll over or get comfortable in bed, forcing her mom to tend to her several times a night.
Commisso worries her daughter could smother in the sheets or fall out. Alessia is frequently found helpless with her head hanging over the edge of the bed.
“Why is Alessia 5 years old? It’s due to my care,” said Commisso, who lives on a small pension from her former sales job and her husband’s disability pension.
“If I continue on at the rate that I’m going, how much care will I be able to provide her with? …We’re talking about compromising her life.”
Smitherman said he can’t intervene because the home care decision was made by a local Community Care Access Centre.
“This is the kind of thing that health ministers are asked to shield themselves from,” said Smitherman, who spoke to reporters with Alessia in a wheelchair at his feet. He did not acknowledge or speak to the Commisso family.
“But I hope very much that the Community Care Access Centre and those people who are empowered to do so and skilled to do so would be considering all of the available information.”
Smitherman urged Commisso to appeal the home care reduction â€“ something she set in motion in February but has not heard back on â€“ and said the government has expanded home care to 100,000 more people since taking office.
NDP Leader Howard Hampton, who raised the family’s case in the Legislature’s question period, said Smitherman’s answers appeared heartless. “There’s no empathy, no sense of how people are suffering… it’ll just be one bureaucratic response after another.”
More people may be getting home care but the money is being spread more thinly, Hampton charged.
“The service and the care that people are getting is less and less. … This mother cannot possibly go on this way… you’re trying to go on three hours’ sleep a night. You can’t do it.”
Queen’s Park Bureau