When Josie Dickey, 88, had a stroke in 2002 she was placed in a nursing home after the rehab hospital discharged her. But her daughter, Brenda Terry, of Fort Smith, Ark., was troubled by the indifferent care her mother was getting. “I felt like they were mistreating my mother. If she had any pain, or called for help too much, they'd sedate her. If she wet herself, they'd put her in bed for the rest of the day,” says Terry. “It broke my heart.”
Luckily, Terry, 58, lived in a state that had a program to offset the financial hit she would have to take if she quit working full-time—or altogether—to take care of her mother herself.
Some 44 million Americans provide unpaid care to adults, typically their own relatives. “It's incredibly important that there's paid family medical leave,” says Taylor Hatcher of the National Partnership for Women & Families. Especially when someone “has to choose between caring for a family member, or going to work.”
Although paid family caregiving programs are still somewhat scarce, several states have initiated them—and in December 2006 Congress passed the Lifespan Respite Care Act (H.R. 3248), “to establish a program to assist family caregivers in accessing affordable and high-quality respite care, and for other purposes.”
The new legislation makes federal funds available to appropriate state agencies to: develop or enhance lifespan respite care at the state and local levels; provide respite care services that give family caregivers “time off” from caring for children or adults; train and recruit respite care workers and volunteers; provide information to caregivers about available respite and support services; and assist caregivers in gaining access to such services.
Cash & Counseling (C&C), a program developed in partnership with The Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services (HHS) that is currently available in 15 states (see page 30), enables elderly and disabled Medicaid patients who require help with everyday needs like bathing, dressing, grooming, cooking, and housekeeping to choose their own caregivers to provide such personal assistance services—even family members and friends—instead of relying on home care agencies. C&C is a consumer-directed care program, not a traditional agency-directed approach, which means the patient is given a certain amount to spend on services to which he or she is entitled under Medicaid law, and works with a counselor to draw up a budget and decide how and to whom to allocate the available funds for these services.
A 2003 HHS report evaluating C&C programs in Arkansas, New Jersey and Florida found that people who were “given the opportunity to have a budget and direct their own personal assistance services clearly benefited from improved access to paid care and better quality care,” says Pamela Doty, a C&C federal project officer. The report also concluded that in each age group in these three states, C&C participants had lower expenditures on nursing homes and home health care services. As important, they got all the services to which they were entitled by law—which Terry's mother, for instance, had not been getting at the nursing home.
Peace Of Mind
After several months worrying about substandard care her mother was receiving, Terry got her out of there and made a place for her in her own home. At first, Terry hired home health care aides to care for her mother, but in 2004 she took a temporary disability leave from her job as a customer service representative at a local utility to recover from cancer and was able to provide her mother with round-the-clock care.
“My mother can do nothing on her own,” says Terry. “She still has paralysis on her left side from the stroke, and has heart disease, diabetes and osteoarthritis.” Terry's mother also needs a wheelchair and “she can't prepare food by herself, go to the bathroom by herself, and I have to put her in the bathtub with a special lift.”
Since taking care of her mother is a full-time job—and then some—Terry applied to receive compensation through Independent Choices, the C&C program in Arkansas. She receives $6.00 per hour for 20 hours a week to care for her mother—an average of $500 per month. Dickey's Social Security, Medicare and Medicaid coverage also help defray some of the cost of medications and special dietary needs.
Terry makes sure that Dickey sees her grandkids and great-grandkids often, and she and Terry go out regularly, running errands or window-shopping. “It keeps her stimulated,” says Terry. “I don't think she'd last two months in a nursing home. She enjoys her family. She'll get up in the morning and say, ‘What are we going to do today?’”
The Ultimate Gift
Brenda Hetnik, 66, of Queechee, Vt., cares for her 89-year-old mother, Helen Miglorie. She also took care of her father, Fred, right up until he died earlier this year. “They did so much for me in my early years, this was the only way I could return my love to them.”
When both her parents were living, Hetnik received a $2,800 monthly stipend through her state's Choices for Care program, now reduced to $1,200.
Hetnik takes her mother to doctors' appointments, bathes her and takes care of housekeeping and other tasks her mother can no longer do herself because of advanced macular degeneration (an eye disease that can cause blindness). Hetnik also makes sure her mother is not homebound. Every day, they go out for coffee, to meet friends or to run errands. “Quality of life is important,” Hetnik says. Her mother is “so thrilled” to get all the one-on-one TLC her daughter has to give.
“People who are eligible for our program need nursing-home level care, but ... have a real desire to be in their own homes,” says Donna Nestle, a primary case manager with the Choices for Care Program in Southeastern Vermont. “Keeping folks home and out of nursing homes ... saves money for the state of Vermont. And it's always nicer to have a family member, than strangers, take care of you.”
Nestle also points out that certain parts of Vermont have a shortage of skilled nursing and home health aides, and the Miglories likely wouldn't have received the 70 hours of care per week that they got from Hetnik.
Men At Work
John Fiecko of Ventura, Calif., first took advantage of California's Paid Family Leave program in 2004 to look after his mother, Mary, 84, who was recovering from a brain tumor. Then two years later, he took care of his father, Chet, 86, who has Alzheimer's disease and had taken a bad spill. Both times, John, 42, received 50 percent of his income for six weeks, then switched to the unpaid federal Family Medical Leave Act (FMLA) program until his parents' conditions stabilized enough for him to return to work as a manager in a supermarket. John used 10 weeks of the unpaid leave to take care of his mother, and six weeks to take care of his father.
As a caregiver, John helped his parents with everything from getting out of bed to visiting doctors and physical therapists. But his responsibilities didn't end there. “I wasn't used to the food prep, paying their bills, keeping their house running—and I had my own house to maintain,” says John who moved in with his parents in 2004. He believes his round-the-clock availability has kept his parents out of an assisted living facility. “My mom jokes, ‘What would we do without Johnny?’”
Programs that compensate spouses, children or other relatives for the home care they provide are win-win for families and government agencies alike. When the caregiver is emotionally invested in the patient, the quality of care is high, and the agencies save money. “Traditional agency-delivered aide services typically include administrative overhead,” explains Doty. Loved ones supplying the care “makes service delivery more efficient and lowers administrative overhead.”
In other words, instead of money being spent on administrative costs it goes toward an extra helping of TLC to a loved one who really needs it.
Overview of Caregiving Programs
▪National Respite CoalitionFederal funding to state and local agencies for respite care to family caregivers, and training volunteers providing respite care. 703-256-9578 or www.archrespite.org/NRC.htm
▪Healthy Families Act (Nationwide)Proposed bill would require employers with 15 or more workers to guarantee seven paid sick days a year to each of them to care for family members. Expected to come up for a floor vote in both houses of Congress later this year.
▪Cash & Counseling(Alabama, Arkansas, Florida, Illinois, Iowa, Kentucky, Michigan, Minnesota, New Jersey, New Mexico, Pennsylvania, Rhode Island, Vermont, Washington, West Virginia)
Medicaid recipients pick their own paid caregivers and decide what services are needed, like housekeeping or help with bathing and dressing. Caregivers are paid on an hourly basis. 617-552-2809 or www.cashandcounseling.org
▪Paid Family Leave Law (California)Most Californians can receive up to six weeks of partial pay to stay home with a seriously ill relative. Compensation comes from the employee-funded State Disability Insurance program, costing employers nothing. 877-238-4373 or www.edd.ca.gov
▪Family Leave Law (Hawaii)Employers who provide paid sick leave and have 100 or more workers must allow employees who have worked at least six months to use their leave to care for relatives. 808-586-8842 or www.hawaii.gov/labor
▪Enhanced Adult Family Care (Massachusetts)Medicaid-eligible residents can receive paid home care from a friend or relative. To be eligible seniors must need assistance with activities like bathing, dressing or eating, or around the clock-care. 800-841-2900, 800-243-4636 or www.mass.gov/elders
▪Choices for CareMedicaid-eligible residents needing assistance can choose the type of care they receive: home care (choosing the caregiver), community-based care or a nursing home. 800-642-5119 or www.dail.state.vt.us
© 2007 American Heart Association, Inc.