PERSONAL CARE

"Personal care" is one of several terms used to describe one-on-one assistance provided to individuals of any age who need help with daily living tasks on a long-term basis. The term can be used generically to describe assistance with daily living tasks regardless of the residential setting in which the care is provided, whether or not the provider of care and the care recipient are related to one another, and whether or not the care provider is paid. Most often, the term is used to describe services financed by a third party and provided to individuals living outside of institutional settings.

Usually the term "personal care" is used in situations in which some "hands-on" tasks are performed, notably assistance with mobility, dressing, bathing, using the toilet, transferring (e.g., getting out of a bed or chair), or eating. Commonly, personal care also includes other tasks, such as shopping, preparing meals, housekeeping, laundering, and escorting that do not require physical contact. When care at home does not involve "hands-on" assistance, the term "homemaker" or "housekeeper" service is more likely to be used.

When financed by a public agency, personal care services are typically classified as "unskilled" to indicate that workers do not require formal health care training. An indication of the fine line between "unskilled" care and health care is that personal care providers may not administer medications, but they may remind their clients to take their medications.

In the United States the term "personal care" is often used in association with an optional Medicaid benefit. Under Medicaid, states may or may not finance personal care services for those with disabilities who are not residents of an institution. Like other Medicaid services, the personal care benefit is income-conditioned; that is, eligibility is restricted to those with low incomes. The presence of a disabling condition must be certified by a physician who, in most instances, must also approve a plan of care. Medicaid will not provide reimbursement when care is provided by a "legally responsible relative." Spouses and parents of minor children are not eligible for Medicaid reimbursement when they provide personal care. Adult children, however, may be reimbursed as personal care workers for their parents.

The Medicaid personal care benefit originated as a resource for adults for whom the onset of disability preceded old age. It was designed especially for those with very serious mobility restrictions who needed extensive human assistance on a regular basis if they were to lead approximately normal lives. With the expansion of interest in community-based long-term care services for the elderly, the model has been extended or adapted in some participating states to serve older people.

In the year 2000, half of the states had the personal care option written into their Medicaid plans. States with large populations that offered the personal care option included New York, California, and Texas. Pennsylvania, Ohio, and Illinois are populous states that did not participate. Use of the personal care option has been most extensive in New York.

The Medicaid personal care option is only one of a number of sources of public financing for home- and community-based long-term care for the elderly. At least nominally, all states now finance some home- and community-based care through waiver programs. (Waivers relieve states of the usual requirement that Medicaid benefits be provided on a statewide basis to all who meet the eligibility requirements.) Waiver programs are intended to provide states with flexible means of financing services through Medicaid to those with low and moderate incomes who otherwise would qualify for institutional care. Waiver programs can finance a wide range of services that include, but are not limited to, the hands-on care associated with personal care. Waiver programs, for example, may finance household modifications, medical transportation, and adult day care. They are used by states to finance not only long-term care for the elderly but also services for younger populations. Some states use the waiver provision, for example, to finance care in group homes for adults with developmental disabilities.

Although Medicare is designed to be a source of financing of acute rather than long-term care, the Medicare-certified home health program is, in fact, a source of financing for some personal assistance for the elderly. Older people have a relatively high incidence of acute health problems from which recovery tends to be slow. Further, many older people suffer from multiple chronic health problems that require extensive surveillance by health professionals and intermittent intervention by health care providers. For some older people, chronic illness and disability are linked. When Medicare beneficiaries are being treated for a health condition at home under a plan of care that is approved by a physician and supervised by a nurse, Medicare pays for visits by home health aides whose responsibilities can largely be described as personal care. The degree to which Medicare has been the source of financing for long-term home health services has varied over time. Originally, Medicare home health benefits were highly restricted, requiring prior hospitalization and limited in their duration and the number of visits authorized. Later, Medicare home health provisions were relaxed so that prior hospitalization was no longer required, and home health aide services could be provided as long as beneficiaries were responding to medical treatment. However, since the passage of the Balanced Budget Act of 1997, home health agencies have had strong financial incentives to restrict the home health aide services that they provide. Consequently, after 1997 Medicare was no longer a source of financing for long-term home health services.

Personal care is also financed by other public sources. The Veterans Administration provides cash benefits to veterans who qualify because they are severely disabled and live outside of institutions. The allowance is particularly generous for those with service-connected disabilities. Some states offer personal care services for the elderly funded through sources other than Medicaid. California, Massachusetts, Minnesota, and Illinois are states with relatively generous personal care programs for the elderly funded by sources other than Medicaid.

Private long-term care insurance is also a source of financing for some personal care. When they were introduced, long-term care insurance policies were designed only to be a source of financing for institutional care. More recently, policies have been designed to offer flexible benefits. Holders covered by newer policies with more flexible benefits have the option to use some or all of the benefits to finance personal care at home or in an assisted-living facility. Because less than 5 percent of older people are covered by private long-term care insurance policies, such policies are not yet an important aggregate source of financing for personal care.

Relatively little is known about personal care that is paid for out of pocket by consumers or their relatives. Some consumers hire personal assistants directly through newspaper ads or word-of-mouth recommendations, much as domestic workers are hired. In some cases, consumers hire personal assistants who are screened and perhaps trained by an agency.

For the public agencies that finance personal care, the major concerns are controlling expenditures, reaching those in greatest need, and maximizing efficiency in the use of public funds. Many state officials are wary of the Medicaid personal care option because Medicaid is an entitlement service. If states offer a personal care service option, they are obligated to provide services to all who qualify. States use a number of strategies to limit their expenditures when they offer the personal care option: restricting eligibility to those with the most severe disabling conditions, requiring periodic reviews of eligibility, imposing strict income eligibility criteria, setting limits on the hours of service that are funded, and limiting the rates at which personal care workers are paid.

In states that finance their own home care services, other measures are used to contain costs. Some states require co-payments on a sliding-fee basis. Some provide services only to the extent that family members are not available to provide care. Some also set limits on overall expenditures, with the result that service applicants may be placed on a waiting list until an opening can be found for them, or the volume of service provided to recipients expands and contracts according to the availability of funds.

The availability of high-quality personal assistants is a major issue in personal care. Because service recipients rely so extensively on workers for the full range of daily living tasks, workers must be reliable, competent, trustworthy, and responsive to client requests. The burden of responsibility carried by workers is particularly great because they almost always work out of sight of supervisors. Also, when clients live alone, they often look to workers as companions. Because personal care is considered to be unskilled work, workers are characteristically offered low wages, often the legal minimum. The field attracts individuals with minimal employment options. In much of the country, many of those who seek employment as personal care workers are immigrants from cultures very different from those of their clients. Cultural differences are often major barriers to the development of sound relationships between clients and their workers. Shortages of personal assistance workers are common when a strong economy provides entry-level workers with more attractive employment alternatives.

Strategies that make more efficient use of available funds are of great interest to both consumers and funding sources. One approach provides consumers with cash rather than service benefits. Consumers then can hire workers directly under their own terms. In this way, some personnel administration expenditures may be eliminated. Control over the hiring, supervision, and termination of personal care workers has been of particular interest to younger people with disabilities.

An alternative approach to achieving greater efficiency in use of resources focuses on the physical environment. Carefully planned modifications in household design and the introduction of equipment that assists consumers in carrying out daily living tasks can reduce the need for personal care. Some assistive equipment is technically complex and expensive—especially when it is customized to unique consumer needs. Other assistive equipment is inexpensive; examples include easy-grip kitchen tools, shower chairs, and elastic shoe laces. Because personal assistance provided by paid personnel is expensive when the care is intensive and the duration of care is long, substantial investments in environmental changes may be cost-effective in the long run. An emphasis on environmental modifications is also particularly attractive when there are serious shortages of personal care workers.

Consumers who need personal care are well advised to seek expert information about the service resources available in the community. In the United States, the Older Americans Act requires that regional organizations designated as Area Agencies on Aging provide information to elders and their caregivers on a variety of matters, including personal care. The information and referral services funded through the Older Americans Act are particularly likely to be well informed about options for publicly financed services. In some cases, middle- and high-income elders who are expected to pay for care themselves are better served by seeking advice from private case managers than from publicly financed information services.

Francis G. Caro

See also Home Adaptation and Equipment; Home Care and Home Services; Long-term Care; Medicaid.

BIBLIOGRAPHY

Kane, R. A.; Kane, R. L.; and Ladd, R. C. The Heart of Long-Term Care. New York: Oxford University Press, 1998.

Morris, R.; Caro, F. G.; and Hansan, J. E. Personal Assistance: The Future of Home Care. Baltimore: Johns Hopkins University Press, 1998.

Rowland, D., and Lyons, B., eds. FinancingHome Care: Improving Protection for Disabled Elderly People. Baltimore: Johns Hopkins University Press, 1991.