Caring for the caregivers.
Arabella Dorth has two demanding jobs: one as a paralegal with a San Francisco law firm, another taking care of her 86-year-old mother, who is in the advanced stages of Alzheimer's disease. For three years, Dorth commuted to her mother's home in San Diego. For the last five years, her mother has lived closer, first in a retirement community, then in a board and care home, now in a nursing home. Dorth spends easily 15 hours a week on tasks that range from doing her mother's laundry to paying her bills to consulting with nursing home personnel. As a result, Dorth's vacation and sick leave are eaten up, as is one day after work, a half-day on weekends and time on the phone during workdays. When asked what keeps her going, she replies, "It's wonderful to see her face light up when she sees me. She might not know who I am, but she knows I'm family." Single with no siblings, she relies on outside agencies like the state-supported Family Caregiver Alliance in California. By providing "drawers full of information on Alzheimer's disease and medications," as well as a support group, the program "has saved my life," she says.
Dorth's story is not uncommon. Contrary to the conventional wisdom that Americans today are too busy to care for their own, studies show that unpaid family and friends provide the bulk of long-term care.
Twenty-two million Americans - one in four households - are involved in caring for an older family member, friend or neighbor, according to a 1997 study by the National Alliance for Caregiving (NAC), a nonprofit partnership of organizations for the aging. And the number is expected to increase as people live longer and the baby boom generation ages. Roughly 13 percent of the U.S. population is 65 and older. The baby boomers - the 76 million Americans born between 1946 and 1964 - start turning 65 in 2011. By 2030, nearly one out of five Americans will be over 65.
Given the high cost of long-term care, particularly in nursing homes (averaging $46,000 a year), policymakers have a strong interest in encouraging informal, unpaid elder care arrangements at home and in the community. Although the lion's share of long-term care funds, primarily Medicaid, goes to institutions such as nursing homes, state legislatures have crafted strategies to support families who take care of their older relatives. These include respite programs, direct financial support, state-supported programs for caregivers, tax incentives and family leave policies.
Caring for the elderly is not a "one size fits all" situation. Where one family might need a tax break, another needs information and family care planning. Yet another may need the opportunity to get out of the house twice a week for a break or to run errands.
NO MAGIC BULLETS
Most state programs are small and apply to a narrow niche of low-income citizens who care for elderly relatives in their own homes. However, over the past 10 years, states have increasingly appropriated more money for home and community-based programs to assist families with loved ones who can no longer take care of themselves due to mental or physical disabilities. Also, a handful of states recently' have added elder care to their tax benefits that once applied only to child care.
A few states have crafted support programs that operate on state funds. California, New Jersey, Pennsylvania, Washington and Wisconsin have the most comprehensive, according to Kathleen Kelly, executive director of the San Francisco-based Family Caregiver Alliance. "States have to use a mixture of options," she says. "There isn't one magic bullet solution."
With budgets ranging from $2 million to $10 million, most state programs operate through county and regional agencies and provide services such as companions or "adult sitters," adult day care, family consultation and care planning, education and training, home health care and support groups.
In California, the Department of Mental Health contracts with the California Family Alliance and its 11 regional resource centers to provide families with information, support services (including day care and respite help) and training in how to care for their elderly relative. The alliance operates one of the most extensive clearinghouses in the country for information on brain impairments and caregiving (www.caregiver.org), a service that is needed in more states. "We get so much e-mail from other states because people don't know who to call," said Kelly.
In Pennsylvania, the Family Caregiver Support Program operates on a state budget of $10 million and reimburses caregivers for some expenses. It pays up to $200 a month for services and supplies and $2,000 for home modifications and special equipment. Families also get counseling and training. The program is for those with incomes less than $41,230 a year for a family of two. If the family earns less than $21,700, it receives full benefits. To qualify, the caregiver must be helping someone 60 or older or one who suffers from Alzheimer's or chronic dementia. They also must live under the same roof. Some 6,500 Pennsylvania families are helped each year, but despite a jump in funding from $4.5 million in 1991 to $10 million this year, from 500 to 1,000 more are normally on a waiting list. Dan McGuire, chief of managed care at the Department of Aging, calls it a "feel good" program that he doubts will ever disappear. Most caregivers receiving the help are in their mid-60s and having difficulty providing the daily chores their loved ones need. "People who are likely to provide care are the least likely to ask for help," McGuire says.
Other states, like Florida, are looking at new ways to provide help. Its Respite for Elders Living in Everyday Families (RELIEF) program now operating in Jacksonville, Orlando and several counties is "a new way to assist families whose family members are incapacitated," says Representative Willye Dennis, who sponsored the legislation with Senator Betty Holzendorf.
Aimed at giving caregivers a little free time for themselves, supporters say RELIEF "fills a gap in the most cost-effective way." What makes it innovative is its focus on low-income clients and the use of volunteers during evening and weekend hours when other programs aren't open.
By contracting with private organizations and area agencies on aging, volunteers are trained in "social respite." They learn about aging, dementia, safety, first aid, communication, communicable diseases and the stress and strains of giving care. For two to four hours once or twice a week, they read to their assigned client, go for walks or do light meal preparation and housekeeping, depending on whatever the caregiver needs. Some are reimbursed for transportation. Some get $2.55 an hour, and others receive no stipend or reimbursement at all.
Started in September 1997 with an $800,000 appropriation, the project had 100 community volunteers caring for 152 clients by February. "People love this program," Dennis says. Funding is assured for next year, she reports, and work is under way to develop the popular program statewide.
THE FEDS HELP, TOO
The vast majority of states help out low-income people with respite care, which includes adult day care or adult sitters, allowing a caregiver time to go to work or run errands. Medicaid programs in 38 states cover annual respite care for an estimated 250,000 elderly, and Medicaid programs in 40 states cover adult day care, according to Amy Tucci of the American Public Welfare Association. Title an all-purpose social service block grant with few strings attached - is also used to finance such care, but is in danger, according to Tucci. The program suffered serious reductions under the welfare reform law, and further cuts are pending in 1998.
Also tied to federal money in some states are programs that help low-income caregivers with some form of financial assistance. Some Medicaid waiver programs do this, but little is known about how many people get such assistance or how much is being reimbursed. At last count, a 1990 study reported that 35 states and the District of Columbia provided Medicaid or other payments. Under Medicaid, family members must be licensed as qualified providers, so a very small number of them are actually paid.
The federal Family Leave Act is another policy that might not be as much help for elder care as lawmakers originally planned. Overriding most state plans in 1993, the federal act allows some people to take off from work to care for a seriously ill family member. Gail Hunt, NAC's executive director, says that although family leave is an important option, especially for dual income families, in reality many workers cannot afford to use it because the leave is unpaid.
However, a handful of states do have laws more generous than the federal act, according to the National Partnership for Women and Families (formerly the Women's Legal Defense Fund). Vermont goes furthest - granting time off to take a parent, parent-in-law, spouse or child to routine medical, dental or other professional appointments.
SOME OFFER TAX BREAKS
Half the states offer a tax break for elder care to people who care for a family member in their own homes and to firms that provide dependent care assistance to employees. By reducing the amount of income taxes owed, the benefits help offset the cost of the care.
Dorth, like many others across the country, would not be eligible for many state tax benefits. For claims to be valid, the elderly relative must live with the caregiver and be financially dependent. These two caveats limit the number able to take advantage of tax breaks.
Delaware Lieutenant Governor Ruth Ann Minner, an advocate for household dependent care credits, agrees that these factors restrict the eligibility of some, but emphasizes that while Delaware's law covers elder care, it was primarily crafted for child care. "Low- to middle-income families with children benefit the most from the credit," she says.
Policymakers have focused first on child care because, up until now, that's been the greatest need and the easiest to address. As the population grows older, however, and the number of workers with responsibilities for elder care burgeons, this is sure to change.
TAX RELIEF AT HOME
Helping an old person is a labor of love that is time consuming, expensive and can interfere with work. Many caregivers spend part of every paycheck on weekly supplies, such as medication and diapers. Periodically, caregivers have to leave work to attend to a crisis at home. For those who qualify, even a small tax break can help offset everyday expenses and pay for extra help at home.
About a third of the states offer either a credit or deduction of expenses and in some it's in addition to the federal benefit.
When Arabella Dorth was asked how she would use a tax credit such as the one offered in Delaware, she said the $1,080 would help her re-energize. If she were a qualified dependent caregiver and a Delaware resident, she could claim a benefit equal to 50 percent of the federal credit. This would amount to an additional $360 on top of the maximum $720 credit for one qualified dependent on the federal income tax return. Dorth says, "While $1,080 wouldn't go far, it would allow a person to hire some extra help every now and then so she could take a break from her demanding situation."
TAX RELIEF AT WORK
Many caregivers say their tasks would be easier if they had an adult day care facility at their work or nearby. For some, center-based care has more to offer than an assisted living situation at home where an aide from an outside agency comes in and "elder-sits." Although the aides are trained in custodial care, they often lack important psycho-social and therapeutic skills. Many in need of care - such as Alzheimer's patients - also need stimulation, activity and companionship. A good center provides activities to keep their minds busy, help them connect with other people and keep them from getting depressed.
Illinois, Mississippi, Montana and Rhode Island offer companies a tax credit for providing day care assistance, either through a direct benefit payment or by actually hosting day care at the work site or at a community facility.
Representative Carmel Wells-Smith, who sponsored the Mississippi bill that added elder care to employer tax credits, helps an elderly family member - her 100-year-old grandmother. She and her mother struggled with the decision of how to care for her grandmother while they worked, and eventually converted part of her mother's office into their own care space. But Wells-Smith says that their situation is unique. "Most people don't have that opportunity," she says. She hopes the tax benefit results in more options for workers.
"In Rhode Island there's an increased interest in looking at elder care as part of family policy," says Senate President Pro Tern Charles Fogarty who encourages a wide range of policy alternatives that help older citizens. The senator, who serves as chairman of the state's Long Term Care Coordinating Council, says that employers are starting to recognize that many of their workers are part of the "sandwich generation" with dual responsibilities - caring for both children and aging relatives at the same time. "In the long run," says Senator Fogarty, "helping businesses adopt family friendly policies is also good economic policy."
Companies, however, have been slow to establish adult care programs. Mississippi credits employers for 50 percent of the expenses they incur for child or elder care, but most companies have concentrated on child care. Representative Wells-Smith is convinced this will change as the population ages and more national attention focuses on the needs of the elderly. "I expect more employer participation in elder care in the future," she says.
CAREGIVERS: A PROFILE
Seven in 10 family caregivers are women in their mid-40s, caring for elderly female relatives, most often under the same roof, according to the National Alliance for Caregiving (NAC). Relatively few recipients live in a nursing home or in an assisted living or group facility. Four in 10 caregivers simultaneously care for their children, and most work full time (51.8 percent) or part time (12.3 percent).
On average, caregivers spend 18 hours per week for four and a half years at the task, although nearly one in five provides constant care (at least 40 hours a week). They help with such things as transportation, housework, grocery shopping, meal preparation, financial management and arranging for or supervising outside services. More than half help with such things as getting in and out of a bed or chair, dressing of feeding, and a fourth help with bathing and toileting. Caregivers are more likely to give up free time and time with other family members and, as a result, experience physical strain and emotional stress.
Seventeen states - Alaska, Arkansas, Delaware, Hawaii, Iowa, Kansas, Kentucky, Maine, Minnesota, Nebraska, New York, North Carolina, Ohio, Oregon, Rhode island, South Carolina and Vermont - and the District of Columbia offer individual taxpayers a credit for at-home dependent care expenses. Idaho, Montana and Oregon offer similar tax relief, but do not tie it to federal qualifying levels. Idaho, Maryland, Massachusetts and Virginia allow taxpayers to deduct household and other expenses, and Alabama, Arkansas, Illinois, Mississippi, Montana and Rhode Island offer income tax breaks for employer-provided assistance.
Family Leave Policies
Family leave laws in 11 states and the District of Columbia are slightly more generous than the federal law. Maine, Minnesota, Oregon, Vermont and the District of Columbia extend the benefit to firms with fewer than 50 employees. Connecticut, Rhode Island and D.C. allow workers to use more than 12 weeks a year, but no more than 24 weeks in a two-year period. Alaska extends the benefits and offers more than 12 weeks of unpaid leave for public employees only. Georgia, Hawaii, Iowa, North Dakota, Oregon and Vermont broaden the definition of "family member" to include grandparents or in-laws.
Under the home- and community-based waivers from the federal government, 43 of the 67 waiver programs in 38 states cover respite care annually. Forty-five programs in 40 states cover adult day care, according to the American Public Welfare Association (APWA).
Direct Caregiver Payments
Many states pay relatives for providing home care either through Medicaid waivers or through state-funded programs. Thirty-five states and D.C. authorize some form of financial payment.
Several states including Arizona, California, Minnesota, New Jersey, New York, Pennsylvania, Washington and Wisconsin have specific state programs to assist caregivers. Most provide information, counseling and assistance with respite care.
Wendy Fox-Grage tracks aging and long-term care issues for NCSL. Jennifer Grooters specializes in tax and spending issues for NCSL.