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Patient seeks care for home aides
Disabled people need a stable work force of home-care aides, advocates say.
NEW CASTLE, Pa. — After going blind six years ago, Ken DeFiore didn’t go to a nursing home.
The state would have paid for him to stay in one, with 24-hour care.
But he didn’t need it.
Instead, the New Castle man got what’s known as a waiver from the state so he could stay at home, and he hired a worker to take care of him there.
That worker, explained DeFiore, who’s also a diabetic, performs many tasks.
She fills his insulin. She cleans his apartment, cooks for him and does his laundry. She takes care of his mail and goes to the grocery store.
DeFiore, in turn, gets to live in the community. He also has a job, at an agency that advocates for independent living for disabled people who want to stay home.
As the civil rights coordinator for Disability Options Network, with offices on Mercer Street here, he has gone before city council to lobby for signals that speak to let a disabled person know when to cross the street.
He has advocated for accessible parking lots, and he has gone to hospitals and schools to give training and education on the needs of disabled people.
What’s critical for disabled people who want to stay home, he believes, is the support of a reliable, qualified home-care worker.
Like his employer, the agency DON, he supports the formation of a statewide advocacy board, a Consumer Workforce Council, to promote a stable work force of home-care aides.
The council would not be a union, though unions are supporting it. Rather, it would be a board that would negotiate with the state for reimbursements for better pay, health benefits and vacations for home-care workers.
Giving those workers, who make between $8 and $9 an hour in this area, higher pay and better benefits is crucial to making them feel like they have a career, not just a job they’ll want to leave as soon as they find one that pays better, said Chris Lloyd, executive director of DON.
“We have a work force crisis,” said Lloyd, who pointed out that for doing the same jobs in nursing homes, workers are paid between $11 and $15 an hour.
Alex Keppler of Grove City quit college to care for his mother after she was diagnosed with multiple sclerosis in the winter of 2003-04.
He’s one of three aides who take care of her, and she has grown to trust the people who, he said, do many more tasks than their counterparts in nursing homes typically do.
Nursing home workers, he said, have specific duties.
“But we have to take care of medicines, diet, doctor’s appointments, shopping, everything,” Keppler added.
Agencies provide CPR, first aid and other training for aides, and the disabled people they work for train them in specific needs, Lloyd said.
Some aides know the needs of diabetics. Others know how to care for someone with multiple sclerosis. The new council also would create a registry of home-care workers throughout the state so it would be easier to find a qualified worker to step in when an aide needs time off, he said.
DON and other advocacy organizations throughout the state are working now to create the council, Lloyd said. Its existence depends on an intergovernmental agreement, with at least three counties agreeing to support it, said Bob Stoner, communications director for DON.
Lloyd said state agencies are supporting it, and the director of the Department of Labor and Industry gave advocates who did not like a previous home-care worker plan until the end of September to come up with an alternative.
A statewide steering committee did just that with the CWC proposal, he said, and instead of waiting years for it to pass through the legislative process, the committee chose the route of the intergovernmental agreement. It identified 11 counties to approach as a starting point.
DON has approached the Lawrence County commissioners, and plans to approach their counterparts in Mercer and Butler counties, where they also serve clients.
Lawrence commissioners have referred the proposal to their legal counsel.
“We’re cautious when documents are put before us. That’s why we have a solicitor,” said Commissioner Dan Vogler, who added that he believes better pay for home-care workers is “a worthy goal.”
“The challenge will be the state’s budget situation,” he said, pointing out that Gov. Ed Rendell has presented a budget that includes a hiring freeze, cuts and layoffs.
Lloyd and Stoner said, however, that advocates believe the council will save the state money if it helps more disabled people stay home.
The cost of a nursing home stay, said Lloyd, is an average of $67,000 a year, versus nearly $21,000 a year for someone to stay home. Even with a wage increase, home-care workers would result in a savings, he said.
Lloyd said that even though it wouldn’t be necessary for home-care workers to unionize for the council to negotiate better wages, he recommends they do it. Not all advocacy agencies agree, he said. But he believes unions would give the workers a better lobby, even though they wouldn’t strike.
Five other states — Washington, Oregon, California, Michigan and Massachusetts — have CWCs.
The idea is a better bottom line for home-care workers, Lloyd said, because the bottom line for many disabled people is that they want to stay in their homes.
starmack@vindy.com