As a child, Melissa Richardson was bounced between foster care homes, group homes and her mother’s home. Stability was in short supply.
The Tempe woman, born four months prematurely and who uses a wheelchair because of cerebral palsy, scoliosis and arthritis, decided several years ago she was going to live independently, and she has.
But over the past six years she has had more than 50 different home health care workers, been left lying in her own feces, had her cell phone and several hundred dollars stolen, and lost her faith in the system.
"When somebody doesn’t show up, I’m stuck in bed," said Richardson, 31. "It’s hard to find a good person. And once you do, there’s no back-up."
Richardson is part of a class action lawsuit over home health care scheduled to go to trial in U.S. District Court in Tucson next month. Three years of settlement negotiations between the Arizona Center for Disability Law and the state have failed.
The center is accusing the Arizona Health Care Cost Containment System and its long-term care program of violating federal law and patients’ civil rights by failing to provide adequate home care to the elderly and disabled who are entitled to it.
It also charges that the program fails to keep track of whether people actually are receiving the care they have been prescribed, and forces some people into nursing homes because they can’t get care at home, a violation of the Americans with Disabilities Act.
Home health care, which can include everything from housekeeping to bathing to skilled nursing, allows the elderly and disabled to live independently rather than in nursing homes or other institutions.
More than half of the nearly 21,000 elderly and disabled AHCCCS patients in Arizona are cared for at home or in home-like settings by contracted providers. Keeping people in their homes when possible is cheaper, generally better for their health, and a requirement under the ADA.
"Federal law requires that (AHCCCS) pay enough to their providers to cover adequate services to people in the community . . . and also requires them to assure the services are provided," said Sally Hart, an attorney in Tucson with the Center for Disability Law.
"They’ve refused and they continue to refuse to collect the data," she said. "We think that’s because they know there’s a big gap" between the care people are supposed to receive and what they are receiving.
When the lawsuit was filed in 2000, a robust economy and low wages had plunged the home care industry into crisis, with dozens of elderly and disabled on waiting lists for services, companies dropping out of the business, huge employee turnover and patients left dangling.
Over the past three years, the state’s long-term care system increased the rates they pay to contractors by more than 20 percent. The contractors in turn were required to pass some of those rate increases on to workers in the form of higher wages and/or benefits.
Today, the waiting lists have all but evaporated and home care company operators say it’s easier to find and keep workers. Still, with wages averaging $7 to $10 an hour for non-skilled workers, turnover persists.
"Increasing the rates and the worsening economy definitely helped us," said Alan Schafer, program manager for the AHCCCS Long Term Care System.
S chafer said tracking whether or not services are actually provided would be an administrative nightmare and divert case managers from doing more important patient work. Without evidence of a problem, he said, it makes little sense to dedicate that kind of time and attention.
"If there’s not a problem, why do we need to collect the data?" he said. "You can’t be just tracking every little thing. We can’t be micromanaging service delivery."
But Hart said similar data collected for a sample of AHCCCS clients showed that some people were not receiving required in-home services.
And Maricopa County’s Area Agency on Aging performs routine surveys of the clients it serves through its home and community-based care program. The agency serves about 7,000 people a year with non-medical care, such as bathing, dressing, cooking and housekeeping, and has about 500 people on a waiting list, said deputy director Laraine Stewart.
Stewart said wages will remain relatively low as long as the work that caregivers perform is undervalued.
Gail Silverstein owns Care Corners Personal Services in Mesa, which serves some AHCCCS clients in Scottsdale and other East Valley communities. She said there is a much larger supply of workers than when she was working for an AHCCCS contractor several years ago, though turnover and no-shows are still a problem.
"AHCCCS cannot create people out of thin air," Silverstein said. "This is a market issue . . . I don’t know how a lawsuit is going to fix that."
Lisa Haskell got tired of retraining home care attendants and finally took over the job herself a few months ago, working her mother’s care around her full-time work schedule. Virginia Haskell, 80, who has been living with her daughter in Scottsdale for 15 years, needs a wheelchair and is entitled to five hours a day of home care under AHCCCS.
The last worker would show up late, spend hours on the phone, and leave her mother at the Scottsdale Senior Center and return to the house to do her homework, Haskell said.
"I just decided I might as well do it myself," she said.