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By STEPHEN NOHLGREN
© St. Petersburg Times, published May 30, 2000
Without help from the state of Arkansas, Addie Robinson would live in a nursing home. The North Little Rock resident is 82, diabetic and has lost both legs to amputation. Years of cooking and cleaning in other people's homes supported her family but didn't leave her much of a nest egg.
The state Medicaid program used to pay an agency to give Robinson personal care at home, but the service was intermittent and unreliable.
"They came at different times and sometimes not at all," Robinson said recently.
About a year ago, however, Arkansas let Robinson choose her caregiver and gave her the money to pay for it. Now she enjoys the loving touch of her daughter, Deborah. The state stipend allowed Deborah to adjust her schedule and take care of her mother.
"I love it," Robinson said. "She gives me a bath, fixes my food, does my laundry. She does everything for me."
Now, the experimental program that Arkansas started last year is coming to parts of Florida.
Called the Consumer Directed Care Research Project, the program will empower 3,000 Floridians on Medicaid to control the personal care services that keep them going from day to day.
These are the most vulnerable of state clients. About half are elderly people clinging to their independence at home. About half are disabled children and adults suffering from cerebral palsy, mental retardation and other disabilities.
Medicaid has determined that this group would have to live in institutions if the state didn't help with daily care, such as bathing, cooking, cleaning, adult day care and transportation. Medicaid case managers arrange these services through private contract agencies.
In the Tampa Bay area, only certain Medicaid clients in Hillsborough, Pinellas, Pasco and Manatee Counties qualify to participate in the client-directed project. Caseworkers will hand out brochures and talk to clients to see whether they want to sign up.
The two-year research project will put clients in the driver's seat. They will pick what services they want and can hire anyone they want to perform them, including family, neighbors and friends. They will get a cash benefit equal to what Medicaid now spends to keep them at home -- up to $30,000 a year in some cases. Within some constraints, they can spend it how they want.
"This will show whether people, when given control of funds for their care, will . . . buy more exactly what they need," said Kerry Schoolfield, chief of development disabilities in the Department of Children and Families. "We expect to get more bang for the buck."
One advantage is flexibility. Agencies that currently serve these Medicaid clients tend to work 9 to 5, Monday through Friday. But some families already take care of their loved ones during those hours. What they really need is help on weekends and nights. Under this program, clients could hire someone to come in when they want.
In theory, red tape would be minimized.
"One thing that a lot of people with disabilities complain about is transportation" to doctor's offices and grocery stores, said Pam Doty, who oversees the project for the federal government. "Most Medicaid programs have a medical transport service, but it is usually a horribly bureaucratic process to reserve space on it. In some states you have to reserve it weeks in advance, and it's a terrible hassle if your schedule changes."
Under the client-directed program, people could pay for Medicaid transport or, if they liked, call a taxi at the last minute or get a friend or neighbor to drive them in exchange for gas money.
The idea of paying family members to help with their frail and disabled loved ones is beginning to gain acceptance in public policy circles. California is doing it for 100,000 people. The Clinton Administration has proposed a $3,000 tax break for family caregivers.
The research project involving Florida is being conducted in a total of three states. Arkansas started a year ago. Florida is just signing up clients in 19 counties. New Jersey will kick it off a year from now. The Robert Wood Johnson Foundation is providing almost $2-million for the states to monitor the program and evaluate its effectiveness. If clients like it, and it doesn't add to Medicaid's budget, the federal government may expand it to other states.
Arkansas already has discovered one advantage, said program administrator Sandra Barrett. Agencies pay their personal care workers close to minimum wage, which causes tremendous turnover.
One Medicaid client, not on the cash benefit program, reported that an agency had sent 14 different aides to her house in one month. She began to dread their visits, knowing that another stranger was going to come.
Friends or family members, who often provide personal care for free, may be delighted with $6 an hour. It can let them stay at home, or shift to part-time work or change their hours so they can care for a loved one at home.
Some clients have saved enough money by hiring family that they were able to buy prescription drugs and other things that they couldn't afford under regular Medicaid, Barrett said.
In Florida, people on the client-directed program will draw up a budget, which will be reviewed by a Medicaid counselor. Expenditures must be related to their personal care. No trips to Las Vegas. They will have to provide receipts and pay Social Security taxes for the people they hire. If they wish, the Medicaid program will provide a bookkeeper to handle the finances while they decide who to hire for what task.
The state will try to sign up 6,000 clients for the project, representing a cross-section of disabilities and geographical areas. Half will remain in a control group and continue to receive traditional Medicaid benefits. After two years, the state will compare how the two groups fared.
For more information about elderly Medicaid clients, call the Florida Department of Elder Affairs in Tallahassee at (800) 963-5337. For information about disabled adults and children on Medicaid, call the Department of Children and Families at (727) 588-6658 (Pinellas and Pasco) or (813) 871-7490 (Hillsborough).
The Department of Elder Affairs is scheduled to officially kick off the project at 11 a.m. Friday at St. Petersburg's Sunshine Center, 330 Fifth St. N. The meeting is open to the public.