HOME CARE AND HOME SERVICES

Services delivered in the homes of older adults have become an increasingly popular form of care in recent years. Such services allow older persons to remain in the familiar surroundings of their homes and neighborhoods, thus avoiding the trauma that can be associated with relocation and entry into a nursing home or related facility. In-home services, by definition, are based in the community and represent a desirable alternative in many cases to the health and social services provided to incapacitated older adults in institutional settings such as nursing homes, homes for the aged, and other long-term care facilities. Not only are such services usually preferred by older individuals, they can also be provided, in many cases, more cheaply than would be the case in institutional settings. Home care services can also provide important temporary respite for family members and others providing care to incapacitated older persons.

Home care origins

The first documented home care program, the Boston Dispensary, was created in 1796. Boston University's Home Medical Service, founded in 1885, is considered to have been the first hospital-based home care program. Beginning in the 1920s, interest in home care was sparked by those directing attention to the treatment of the increasing number of chronically ill patients. While it was agreed that such patients were not best served in acute care hospitals, disagreement persisted through the 1930s and 1940s as to whether they were better served in institutional settings or in their homes.

More recently, the financial benefits accruing to home care have been emphasized. In the 1970s and early 1980s, proponents of home care argued that home-delivered services were a legitimate substitute for costly hospitalization and increased public money being spent on nursing home care. At the same time, expanded coverage of home care services was legislated through the Medicare and Medicaid systems, the primary government programs supporting this category of service. These regulatory changes, especially those under the federal Omnibus Budget Reconciliation Act of 1980 (OBRA), fueled the expanded use of home health care services. Hospice care for the terminally ill, also delivered in the home, was included in Medicare for the first time in 1982.

Throughout the 1980s, the number of proprietary or for-profit providers of home care grew at a particularly rapid pace because Medicare amendments under OBRA allowed such providers to be Medicare certified. It should be noted that although home care has grown considerably since 1980, it continues to represent a small proportion of spending for all personal health care costs (less that 10 percent of Medicare and Medicaid benefit expenditures are for home care services). The third most common source of payment for home care services is out-of-pocket payments by consumers themselves (Kaye, 1995, 1992).

The growth of home care

It is estimated that anywhere from 14 to 18 percent, or five to six million older adults living in the community could benefit from home care services. These numbers reflect those persons who are functionally impaired to varying degrees (that is, unable to perform one or more of their major activities of daily living such as cooking, shopping, cleaning, and dressing). Some of these older adults are totally confined to their homes and even their beds. It has been argued that additional numbers of older persons who now reside in nursing homes and similar such facilities could also be better served in their homes were in-home services more widely available.

Reflecting the current popularity of home care, the number of organizations providing in-home services to incapacitated persons has increased significantly in recent years. The home care service industry has grown from only eleven hundred such programs in 1965 to more than twenty thousand currently (National Association for Home Care, "Basic Statistics," March 2000). While a substantial proportion of patients served by home care programs are older adults, women in particular, it is important to remember that home care services are also provided to a wide variety of individuals in need of help, including those with chronic health conditions, terminal and acute illness, and those with permanent disabilities. Home care services are also provided by a broad array of organizations including hospitals, visiting nurse associations, hospices, Area Agencies on Aging, senior citizen centers, and even some nursing homes that have moved toward diversifying the services they offer older adults in the community. The fastest growing segments of home care have been hospital-based programs and those that operate for a profit and are unaffiliated with other agencies or organizations. Freestanding for-profit agencies comprise 41 percent of Medicare-certified home care programs, followed by hospital-based agencies, which represent 30 percent (National Association for Home Care, "Basic Statistics").

It should be noted that since 1997 there has actually been a decline in the number of Medicare-certified home health agencies due, at least in part, to changes in home health reimbursement regulations enacted as part of the Balanced Budget Act of 1997. Approximately 2,500 home care agencies ceased to operate between 1997 and 2000, and Medicare home care expenditures actually declined by 4 percent in 1998, making it the only segment of health care to experience a decline during that period (National Association for Home Care, "Report Confirms Medicare Cuts"). More restrictive Medicare reimbursement requirements continue to challenge the capacity of some programs to operate on sound financial footing. At the same time, home care personnel continue to be in short supply, especially home care aides, who occupy positions of relatively low status within the human services sector, as reflected by their limited career advancement opportunities and low salaries.

Changing face of home care services

A steadily expanding array of services are now available to older individuals that experience a health or long-term disability and wish to be cared for at home. Accompanying our improved ability to miniaturize and make portable a variety of medical and communications technologies has been the continuous expansion in the range of high-tech medical care that can be provided in the home (Kaye and Davitt). Presently available home environmental and medical devices include: personal emergency response and auto-dialing and alarm systems signaling the need for help; in-home computers for self-instruction on taking medications and operating medical equipment; telehealth and telemedicine systems that allow patient health monitoring and assessment from remote locations; intravenous therapy equipment, including artificial nutrition and hydration; mechanical ventilation; and even robots able to assist the patient in performing certain basic activities of daily living.

There are several types of organizations providing home care services to the aged, some of which offer one type of service exclusively while others provide a variety of integrated services. Most home care services are available twenty-four hours a day, seven days a week throughout the year. The designation home health agency usually refers to a Medicare-certified service provider that complies with governmental requirements and is highly regulated. Such an organization may focus on the provision of nursing services while others may offer a broader range of care including physical and occupational therapy, social work, housekeeping, and durable medical equipment.

There are numerous home care services that offer exclusively homemakers and home health aides. Although not equipped to provide nursing services, the home health aides offer hands-on care such as patient bathing and dressing in addition to bearing responsibility for household tasks, including meal preparation and light housekeeping. Housekeeper services exclude hands-on care. Both home health aides and housekeepers serve as companions for their patients.

Hospice care, which may be offered as an in-patient service or in the home, is designed to provide integral medical, psychosocial, and spiritual care to the terminally ill as well as offer support to their families. It is typically available to persons with a life expectancy of no more than six months. Providers of hospice care in the home furnish the necessary services, equipment, and medications to allow the patient to die in his or her own home, in the company of loved ones, and without unnecessary pain. Care is palliative, alleviating pain without curing. Hospice services are typically Medicare certified.

In addition to home health care and hospice agencies, registries, specialized employment agencies, and private-duty agencies are sources for hiring home care workers, particularly nurses and aides. Unlike their Medicare-certified counterparts, they are not usually regulated or licensed by a government body and they do assess a fee for placement of staff. All types of home care personnel—nurses, aides, therapists, social workers, companions, and others—may be privately employed by individuals without a mediating organization. These home care workers, however, are not regulated by an outside party unless they receive government funding.

As a result of the trend toward providing in-home services to the more infirm, durable medical equipment suppliers, pharmaceutical companies, and infusion therapy companies have become regular features of the home care landscape. Providers of durable medical equipment offer a variety of products, including respirators, wheelchairs, catheters, and walkers, and typically provide delivery and set up. Some pharmaceutical, respiratory therapy, and infusion therapy companies provide nursing staff as well to administer medications and train patients in proper self-management techniques for the medical equipment provided.

Not only are home care services available in a number of forms, they are also provided by an array of professionals and paraprofessionals as described below.

• Companions, as their name would suggest, provide companionship to home care patients who are socially isolated and, in doing so, also increase the patient's safety by visiting on a regular basis.
• Dieticians who are trained in the nutritional needs of patient populations offer dietary assessments and counseling.
• Home health aides assist patients who cannot manage their activities of daily living alone. They may provide help with toileting, dressing, meal preparation, and transferring as well as offer companionship to the isolated.
• Housekeepers or homemakers offer chore services such as light housekeeping, laundering, and shopping. Unlike home health aides, they do not provide hands-on patient care.
• Occupational therapists (OTs) help patients with their daily living activities by providing skills, specialized adaptive equipment, and retraining. They address tasks such as bathing, meal preparation, dressing, and household maintenance.
• Physical therapists (PTs) work with patients to relieve pain or restore mobility through the use of exercise, massage, and specialized equipment.
• Physicians, as independent professionals, may make visits to the home to diagnose and treat patients or they may provide these services as a member of a home care service interdisciplinary team. Physicians may also oversee patients' care plans and prescribe medications.
• Registered nurses (RNs) and licensed practical nurses (LPNs) provide skilled services such as wound care, injections, and intravenous therapy that cannot be provided by paraprofessional and nonprofessional staff.
• Social workers, who often serve as case managers in home care, tend to the emotional and social well-being of patients by providing counseling services and establishing relationships between patients and other types of needed service providers.
• Speech therapists address the needs of patients with communication disorders that hinder their ability to speak. They are also qualified to provide assistance with muscle control in and around the mouth area that may affect breathing and swallowing.
• Volunteers can play a critical role by offering a variety of services including friendly visiting, transportation service, meal delivery, and running errands.

Paying for home care services

Home care services may be paid for out-of-pocket, meaning paid privately by the recipient of service or family members, or by third parties (e.g., insurance companies). In many cases, home care services are covered by both a third party and the patient, with the patient covering the difference between the amount reimbursed and the actual cost of care. According to the Health Care Financing Administration (HCFA), in 1997 out-of-pocket expenditures represented approximately 22 percent of all home care payments. Among third-party payers, Medicare was the primary single source of home care payments, covering about 40 percent, followed by Medicaid at almost 15 percent and private insurance at approximately 11 percent (National Association for Home Care, "Basic Statistics"). HCFA projects that the portion paid by Medicaid will increase and Medicare's share will decrease through the year 2008.

Medicare, a federal program providing benefits to most Americans sixty-five years of age and older, will cover home care services for homebound persons with medical conditions requiring skilled nursing or therapy services. To qualify for reimbursement, the patient must be under the care of a physician, who authorizes and periodically reviews the patient's plan of care. The patient must receive service from a Medicare-certified home health agency. In addition to skilled nursing care, Medicare may provide coverage for home health aide services, physical therapy, occupational therapy, speech therapy, medical social work, and medical equipment and supplies. Medicare coverage is also available for hospice care for the terminally ill.

Medicaid, a program for low-income individuals, is a joint federal-state medical assistance program. Because it is administered by individual states, there are differences in eligibility requirements and covered services from state to state. All states, however, are mandated by federal Medicaid guidelines to cover part-time nursing, home health aide services, and medical equipment and supplies. States may optionally provide payment for a variety of therapies and medical social work services. The majority of states also provide Medicaid-covered hospice care.

Various types of private insurance policies provide home care benefits, each with its own eligibility requirements and array of covered services. Commercial health insurance companies often provide some coverage for short-term acute care in the home, but availability of reimbursement for long-term home care is less common. Such policies frequently have cost-sharing provisions requiring that the insured pay some part of the cost of home care services.

Long-term care insurance, which has grown in popularity in recent years, varies greatly from company to company. While initially intended to provide benefits for extended nursing home care, such policies now routinely offer benefits for a variety of in-home services.

Medigap insurance, as the name implies, is designed to bridge many of the gaps in Medicare coverage. Medigap policies vary with regard to eligibility and benefits, but do often provide coverage for short-term in-home recovery care. Medigap insurance policies are typically not designed for long-term care.

Veterans in need of in-home care due to a service-related disability or condition are eligible for home health care benefits through the Veterans Administration (VA). These home care services must be provided by one of the VA's own home care programs.

Other smaller sources of home care payments include the Older Americans Act which provides federal funding to state and local programs serving frail and disabled older adults; federal social services block grants to states; managed care organizations; Civilian Health and Medical Program of the Uniformed Services (CHAMPUS); and workers' compensation.

Questions for consumers to ask

Selecting an agency that will provide you with home care services is an important and often difficult decision. Generally speaking, the agency must have the necessary experience in providing the kind of care that is needed and be able to provide it effectively. The agency must be able to demonstrate that it has properly trained and supervised staff to care for the patient. Talking to trusted relatives, friends, and professionals (such as one's doctor) about the agency can help with decision-making. The National Association for Home Care (1996) offers the following checklist of questions to ask when determining which home care provider to use.

• How long has this provider been serving the community?
• Does this provider supply literature explaining its services, eligibility requirements, fees, and funding sources? Many providers furnish patients with a detailed "Patient Bill of Rights" that outlines the rights and responsibilities of the providers, patients, and caregivers alike. An annual report and other educational materials also can furnish helpful information about the provider.
• How does this provider select and train its employees? Does it protect its workers with written personnel policies, benefits packages, and malpractice insurance?
• Are nurses or therapists required to evaluate the patient's home care needs? If so, what does this entail? Do they consult the patient's physicians and family members?
• Does this provider include the patient and his or her family members in developing the plan of care? Are they involved in making care plan changes?
• Is the patient's treatment course documented, detailing the specific tasks to be carried out by each professional caregiver? Does the patient and his or her family receive a copy of this plan, and do the caregivers update it as changes occur? Does this provider take time to educate family members on the care being administered to the patient?
• Does this provider assign supervisors to oversee the quality of care patients are receiving in their homes? If so, how often do these individuals make visits? Who can the patient and his or her family members call with questions or complaints? How does the agency follow up on and resolve problems?
• What are the financial procedures of this provider? Does the provider furnish written statements explaining all of the costs and payment plan options associated with home care?
• What procedures does this provider have in place to handle emergencies? Are its caregivers available twenty-four hours a day, seven days a week?
• How does this provider ensure patient confidentiality?

The following checklist of questions recommended by the National Association for Home Care are to be asked of those individuals and organizations whose names were given as references by the home care provider.

• Do you frequently refer clients to this provider?
• Do you have a contractual relationship with this provider? If so, do you require the provider to meet special standards for quality care?
• What sort of feedback have you gotten from patients receiving care from this provider, either on an informal basis or through a formal satisfaction survey?
• Do you know of any clients this provider has treated whose cases are similar to mine or my loved one's? If so, can you put me in touch with these individuals?

Particularly in the case of high-tech home care that necessitates the importation of various technical devices and services into the home, it may be difficult to determine whether this type of arrangement is appropriate for a particular patient or home setting. The decision will be based on factors including: the adequacy of space, electrical capacity, and power backup for the required medical equipment; the ability of the patient or his or her designee to operate and maintain the devices in the absence of trained personnel; the availability of third-party coverage or adequate private funds to cover associated expenses; and an assessment of all viable alternatives. Individuals respond differently to the prospect of turning a home into a high-tech hospital room, making the choice of doing so largely a personal one (Kaye and Davitt).

Patient rights

Home care patients, like hospital patients, have certain rights and protections that must be documented in a written patient bill of rights and provided by the agency to all recipients of service. The federal government requires that all home care patients be informed of their rights, which are also enforced by the law.

Lenard W. Kaye

See also Home Health Therapies; Hospice; Long-Term Care; Medicaid; Medicare; Medigap; Personal Care.

BIBLIOGRAPHY

Kaye, L. W. Home Health Care. Newbury Park, Calif.: Sage Publications, 1992.

Kaye, L. W., ed. New Developments in Home Care Services for the Elderly: Innovations in Policy, Program, and Practice. New York: The Haworth Press, Inc., 1995.

Kaye, L. W., and Davitt, Joan K. Current Practices in High-Tech Home Care. New York: Springer Publishing Company, 1999.

National Association for Home Care. Basic Statistics About Home Care. News release. Washington, D.C.: 2000.

National Association for Home Care. How to Choose a Home Care Provider. News release. Washington, D.C.: 1996.

National Association for Home Care. Report Confirms Medicare Cuts Hurting Frailest Home Care Patients. News release. Washington, D.C.: 2000.