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Disabled wait up to 10 years for home care

Report highlights 'crisis' in number of people lacking help from attendants, supportive housing

August 13, 2008

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Tanya Talaga

SOCIAL JUSTICE REPORTER

Nearly 1,450 people in Ontario with spinal cord injuries, cerebral palsy and other physical disabilities are languishing on waiting lists for in-home care and supportive housing – some as long as 10 years, a report has found.

Of those, 900 people are living in Toronto.

Without help at home, they are warehoused in group homes, long-term-care facilities and hospitals at a high cost to taxpayers.

One day in the hospital costs roughly $1,200, but if that person were to receive care at home from attendants, the cost would be $200 a day, according to the Ontario Community Support Association, which has written the report. Placing people with disabilities back in their homes is not only cheaper, it frees up hospital beds.

The report highlights what the association calls an "unprecedented crisis situation" in the number of people lacking in-home care from attendants and places to live in supportive housing.

The association is holding a news conference today at Queen's Park.

This is a human rights issue, as those who are physically disabled should have the right to choose the type of care they receive, says Susan Thorning, CEO of the association, which represents 700 provincial community support providers.

"We need to see more than just talk," she said.

It will take about $73 million from the provincial Ministry of Health to address the wait lists for attendant services over the next five years, the report says. The association wants wait times for attendant services and supportive housing added to the Ontario Wait Times Strategy. The strategy monitors waits in areas such as cancer surgery and joint replacements.

Health Minister David Caplan was unavailable for comment yesterday.

Attendants help people with physical disabilities perform daily tasks, such as going to the washroom, dressing, bathing and eating.

For four years, Theresa MacNeil, 46, has waited for direct funding so she can live in her own home and hire her own attendants. She has arthrogryposis, a rare disorder that contorts and stiffens her joints and muscles.

MacNeil is unable to walk. She lies flat out on her belly on an electric stretcher. Her physical limitations have not limited her life – she is married, has a 12-year-old daughter and travels downtown to her job.

Currently, the MacNeil family lives in supportive housing in Scarborough, where attendants are available 24 hours a day for people with chronic conditions.

"Being married is one thing, but putting the total responsibility to look after me is another," said MacNeil. "I don't believe in that. I want to give (my daughter) a home, I want to give her a house."

MacNeil recently discovered it could be another two to four years before she gets funding from the province. "It's not that they don't want to give it to me, it's that they can't."

About 6,000 people across Ontario receive attendant services in three ways. Self-managed direct funding allows adults with a physical disability to be in charge of their care – from managing a budget to hiring and supervising their own attendants. Outreach attendant services are provided at home between 6 a.m. and midnight and can be provided at the workplace or post-secondary school. Supportive housing offers 24-hour care in a larger apartment building.

Tracy Odell, 50, has used attendant services for six years. "She helps me cook, all my personal care, getting up, going to bed and showering," says Odell, who has muscular dystrophy. She shares a Scarborough bungalow with her husband David. At age 7 she was sent to live at Bloorview Kids Rehab and stayed until she was 18. She lived in supportive housing for years.

"I wouldn't have survived without help," she said.

Odell, a grandmother, manages $40,000 a year in direct funding to support six hours of service a day, seven days a week. "I can work, I can contribute to my family," she says. "You never leave the program – these are permanent disabilities, it's not like a broken leg."