- By Beth Baker
Part of the Transforming Life as We Age Special Report
Like many family caregivers, Jean Seikel Peterson is making sacrifices to keep her mother at home. Three years ago, Peterson quit her job as a teacher to become a full-time caregiver.
Her mother, Elinor Seikel, 98, is blind from macular degeneration and has a host of other medical problems. She needs assistance with everything from bathing and dressing to medication management and walking. In short, she resembles many people who end up in nursing homes.
But Elinor Seikel is able to stay at home thanks both to her daughter’s commitment and to a program offered through the Massachusetts Medicaid program called Caregiver Homes, which compensates families for their caregiving.
A Welcome Shift
Caregiver Homes is part of a change in the way long-term care is being delivered. In 2013, for the first time, the majority of Medicaid spending on long-term care services was for care delivered in a home or community setting, not for care in nursing homes, according to a report last month from the Bipartisan Policy Center. As part of the trend, state agencies and private companies are coming up with ways to financially support family caregivers and others whom an older adult wishes to hire.
So far, extending caregiver compensation to middle-income families is an anomaly.
Quality of life is just one factor prompting change. Older adults who pay a relative or friend for caregiving are often more satisfied with the care than if they hire an outside agency. At the same time, Medicaid saves money compared to what it would spend for nursing home care. And given a critical shortage of home care workers, family and friends are needed to fill the gap.
A ‘Replacement Wage’ for Caregivers
Peterson and her husband live next door to her mother on a salt river in Cape Cod. Her mother, a former landscape architect and “a Renaissance woman,” ran out of money paying for care. The family had taken out a reverse mortgage on Elinor Seikel’s house, which sits on land that has been in the family for nearly a century.
As a full-time caregiver, “I’ve felt a lot of stress and anxiety, and I’ve felt alone,” says Peterson. “My friends said, ‘Put her in a nursing home.’” But Peterson never considered that option. “[My mother] adopted me when I was 11 months old,” she reflects. “I’ve had the best life in the whole world. She’s the most amazing person and is so full of love. Even now, she wants to know what she can do for me.”
Caregiver Homes is something Peterson learned about through a support group for family caregivers. The service, also known as “structured family caregiving,” combines modest financial support for caregivers with nursing and social work services. Peterson receives a tax-free stipend of $40–$46 a day, paid biweekly.
For Seikel, it buys much more personalized care and a higher quality of life than most nursing homes can provide. Her daughter keeps the birdfeeders full and describes which birds are there, so Seikel can identify them. Peterson reads aloud her mother’s favorite books and helps her walk on the beach. For Seikel’s 98th birthday, a neighbor had them over for drinks and hors d’oeuvres.
Limited Reach for Structured Programs
So far, six states offer structured family caregiving programs: Connecticut, Indiana, Louisiana, Massachusetts, Ohio and Rhode Island. Thomas Riley, president and CEO of Seniorlink, a for-profit company that operates the Massachusetts program and four others, says they hope to expand by two states a year.
“Our model requires a registered nurse and a social worker as part of the care team because of the medical issues in the home,” Riley says. Those professionals are available to caregivers by phone round-the-clock and make monthly home visits. Using a computer loaned to her by Seniorlink, Peterson completes a daily log online that helps them stay on top of emerging problems. Caregiver Homes also lets her know about free or discounted products, such as disposable briefs and dietary supplements.
Caregiver Homes’ services are paid for by state Medicaid programs or managed care organizations. “We get paid a daily rate that’s 40 to 50 percent of the prevailing nursing home rate, and we pay the caregiver 50 to 60 percent of that rate,” Riley says. “While certainly not a lot of money — if I could pay them more, I’d pay them as much as possible — $17,000 is often a replacement wage” for low-income workers, allowing them to be full-time caregivers.
Consumer-Directed Cash and Counseling
More widespread than structured family caregiving is a model known as “cash and counseling.” Arkansas (along with Florida and New Jersey) pioneered it through a demonstration grant funded by the U.S. Department of Heath and Human Services and the Robert Wood Johnson Foundation. Now Arkansas’s Independent Choices, which began in 1998, is one of many such programs around the nation that help 800,000 low-income people who are at risk of having to move to a nursing home.
Beneficiaries can pay family (most states do not cover spouses) or friends for caregiving services. By doing so, they often get more help than they would if they paid for home care through an agency.
“There’s a huge shortage of home care workers and agencies have a hard time filling shifts,” says Merle Edwards-Orr of Boston College’s National Resource Center for Participant Directed Services.
Benefits and eligibility requirements vary from state to state. In Arkansas, beneficiaries must be eligible for Medicaid and must have cognitive impairment or need assistance with activities of daily living, such as bathing, dressing or eating. The average benefit is $959 worth of services a month, though a person with greater medical needs might receive as much as $2,500 a month.
Funds can be used for home care or for other purposes that support independence and health, says Debby Ellis, program administrator for Arkansas’s Department of Human Services. One woman used the money to purchase dentures.
Two Types of Help
Edwards-Orr explains that “there are two major supports for everybody who is in a participant-directed program.” One is a counselor, “somebody who says, ‘OK, you’ve got this money, how do you want to spend it? How do you budget it out?’” The other is a financial management service “that helps you do the nuts and bolts, paying payroll, taking out FICA [Social Security] and withholding taxes and worker’s comp — doing that employer technical stuff that nobody knows how to do.”
For Ramona Thompson, 70, of Morrilton, Ark., Independent Choices has been a huge help. Her only source of income is Social Security, “enough to get by on,” she says, but not enough to pay for the help she badly needs.
“I have rheumatoid arthritis and I’m very crippled,” Thompson says. “About two years ago, I had colorectal cancer and had to go through cancer treatment. I just don’t bounce back anymore.”
Through Independent Choices, she’s able to live in an apartment with her son, who cooks for her, keeps house, and takes her to medical appointments. Morrilton is alone during the day when her son is at work, and he leaves her meals that she can heat in the microwave. The program pays for 41 hours a week of his caregiving, with the funds managed by an outside agency.
“If it wasn’t for this program, I don’t know what I’d do,” says Thompson. “Probably be in a nursing home.”
VA Program Provides for All Incomes
The Veterans Administration (VA) has its own version of a cash and counseling program, and it has at least one distinguishing feature. While most similar programs, like Arkansas’s, are limited to families that qualify for Medicaid, the VA program is available to veterans regardless of income. It fills a need for families that don’t meet Medicaid’s requirement of impoverishment, but can’t meet the costs of long-term care, either. So far, extending this kind of support to middle-income families is an anomaly.
The VA program, called Veteran-Directed Home and Community Based Services, serves 1,700 veterans, allowing them to remain at home with help from whomever they wish. To take part, veterans must be enrolled in the VA for their health care and must need help with activities of daily living or have cognitive problems. Sixty-one of 150 VA centers nationally offer the program. About 80 percent of the participating veterans are elderly.
“A significant number of veterans have been able to move from nursing homes” with support from the program, says Daniel Schoeps, director of purchased long-term services and supports, geriatrics and extended care, VA Central Office.
Vets receive, on average, $2,000 a month, but up to $4,000 for those with complex conditions such as Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease). By contrast, a VA nursing home costs more than $8,000 a month.
Most veterans use the funds for care at home, but they also can be used for adult day programs, transportation, even shoveling sidewalks.
“As long as it makes sense and is tied into their need for help [with activities of daily living],” says Robert Kline, veteran-directed program coordinator for the White River Junction VA Medical Center in Vermont, which has a robust cash-and-counseling program.
Both Schoeps and Kline say that satisfaction rates in the program are extremely high. “These programs nationally are meant to let the veteran and their support network have the reins,” Kline says. The intent, “as best we can do it, is to keep those veterans in their home, in their community with their family and friends until they die,” he adds. “[Home] is where veterans want to be.”
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