Home and community-based services are vital to many people with chronic illness or disability. More than 1.3 million Americans received home health care in 2000.³ A review of state spending by the Visiting Nurse Service of New York found that by 1997, Medicaid spending on home and community-based services was growing faster than spending on nursing home care (see Program Results on ID# 030172).

In 1995, RWJF began the $4.8 million Home Care Research Initiative, on home health care policy and practice. (See Program Results.)

According to the National Program Director, the Home Care Research Initiative substantially contributed to the knowledge base about spending on home and community-based services and options for expanding managed long-term care and assisted living.

Several research projects funded under the program, and other home care projects are described below.

Home Health Care Service Improvements

• Directing Care to Those Most at Risk. Home care clients are not all the same; yet, they have been treated as if they all faced similar-and high-risks of institutionalization, hospitalization and other adverse outcomes. Very few home and community-based care programs target services to patients with specific risks of adverse outcomes. Researchers at the University of Michigan developed a home care budget model that directs resources where they are needed most, with budget targets based upon the effectiveness of home care in mitigating four adverse outcomes: death, hospitalization, nursing home use and functional decline. It estimated the risk of those outcomes occurring and the economic value of avoiding those outcomes. (See Program Results on ID# 031360.)
• "Virtual" Home Health Visits. Valley Home Care in Bergen County, N.J., used telemonitoring from 2001 through 2003 to provide "virtual" home health services to chronically ill elderly individuals. (See Program Results on ID# 040741, part of the New Jersey Health Initiatives program.)
  
  Telemonitoring uses two-way video and voice transmitted over a standard telephone line. Specialized registered nurses interacted in real-time with patients through digital cameras at Valley Home Care and the patients' residences.

Results

• The telemonitoring experiment resulted in patients in the program spending less time in the hospital than prior to their participation in the program.
• Nurses could complete three "virtual" visits in the amount of time it took to complete one in-home visit.

Home Health Care Financing

• Federal Reimbursement. The federal Balanced Budget Act of 1997 changed the way Medicare home health is reimbursed. Researchers at Laguna Research Associates and the Visiting Nurse Service of New York examined the impact of the Balanced Budget Act on Medicare beneficiaries, home health agencies and the health care system overall. (See Program Results on ID# 044186 and on ID# 045788.)
  
  Findings
  • The research revealed that the benefit changes led to significant reductions in the number of people who used home health services and the amount of services they received.
  • Researchers concluded that the Balanced Budget Act "clearly has been successful at reining in the use of the [home health] benefit as well as shifting it toward skilled services."⁴
• Long-Term Care Insurance. A study by the Center for Health and Long-Term Care Research found that private and public long-term-care insurance increases the amount of home health care received by disabled adults and saves government dollars.
  
  Findings
  • People with private or Medicare long-term-care insurance got 10 to 13 hours more formal care than those without this coverage.
  • People without long-term-care insurance were about six times more likely to use Medicare home health services than those who were privately insured. For every 100 privately insured claimants, Medicare saved $20,647 annually (1999 dollars). (See Program Results on ID# 031352.)

Measuring Quality in Home Health Care and Community-Based Care
The following projects developed performance measurement tools for home health care services.

• From 1988 through 2003, researchers at the Center for Health Services Research at the University of Colorado developed a set of quality indicators known as the outcome-based quality-improvement system (OBQI), and tested them with three home health agencies. (See Program Results on ID# 031950.)
• Indiana University School of Law project (ID# 020608) tested and then evaluated two quality improvement strategies for community-based long-term care services for older and disabled adults. (This project was part of the Research and Demonstrations to Improve Long-Term and Ambulatory Care Quality program. (See Program Results on ID# 031950.)
• From 1997 to 2001, researchers from the University of Michigan developed and evaluated home and community-based care using a set of 22 indicators. The work was part of an evaluation of the Michigan Managed Long-Term Care Initiative (since renamed MI Choice), which allows eligible adults to receive Medicaid-covered services—similar to those provided by nursing homes—in their homes. The researchers found that MI Choice clients improved on 16 of the 22 indicators. (See Program Results on ID# 031808.)

Community-Based Respite Care
Adult day care centers provide services to participants in a structured setting and also relieve families of the daily burden of caregiving. Participants arrive in the morning and leave at the end of the day. Adult day care centers also provide services to participants (such as showers and dressing, hair washing, pedicures and manicures) that their families would otherwise have to arrange.

Partners in Caregiving
RWJF's Partners in Caregiving: The Dementia Services Program was an $8-million program that educated mission driven, nonprofit adult day centers about marketing, financial management and program design so they could achieve financial self-sufficiency. Partners in Caregiving and its predecessor, the Dementia Care and Respite Services program offered funding and technical assistance to expand the availability of day programs serving people with dementia and other physical and mental disabilities by expanding their hours and the scope of services they offered. (See Program Results.)

The RWJF programs, managed by a national program office at Wake Forest University, established or improved adult day centers in 30 states and the District of Columbia. In Partners in Caregiving, some sites received funding and limited technical assistance while other sites received no funding, but intensive technical assistance, including special training workshops, resource materials, consultant services, visits to model day centers, access to a toll-free help line and hands-on assistance from an assigned mentor.

Centers received an average of $93,000 in grant support plus basic technical assistance, costing an average of $13,500 per center over three years. The average cost per project for those receiving only intensive technical assistance was $39,000 over three years.

Lessons Learned

• Solve the customer's problem. Recruiting day center participants and then retaining them were the two biggest challenges. The most successful centers were those that showed a willingness to adapt to fit the needs and wants of individual participants and their families. This included lengthening hours of operation and providing additional services to the patients, such as manicures, pedicures, showers and hair washing.
• Stay open a full day. Early on, adult day centers typically were open from 10 a.m. to 3 p.m., sometimes for only two or three days per week. The hours were often dictated by the availability of funds. However, a short day made it impossible for working caregivers to use the center to care for their elderly relative, thus cutting out a major market segment that could pay in full.
• Give everyone the opportunity to pay. Before these demonstration programs, most centers charged less than the cost of providing their services, and in many cases they did not even know what their unit costs were. Centers in these programs were encouraged to calculate their full cost of care and to begin charging it, offering discounts when necessary to those in need. This strategy helped increase private pay revenues substantially and participants rarely dropped out of the program as a result of price increases.
• Provide or arrange transportation. Transportation is costly, but is a vital part of any program. Many participants are not able to attend an adult day center without a ride. Many programs noted higher attendance when transportation was offered. Providing or arranging for transportation also was associated with better financial performance.
• Offer a full day of engaging activities. Participants have varied backgrounds, preferences and abilities, so an adult day center must offer a variety of activities. Activities that are engaging are also therapeutic and attend to emotional and intellectual needs as well as physical ones.
• Provide a continuum of care. People served by adult day centers often have many other needs. Adult day centers can serve as the nexus between acute care and long-term care. Adult day centers should provide either a continuum of care—using a one-stop shopping approach—or create partnerships with other community service providers.
• Recruit and retain quality staff. Proper orientation and initial training, plus continuing individual and group education, are key components of developing a staff that can create a high-quality program, which, in turn, will attract a high-quality staff.
• Help caregivers cope. Because caring for the frail elderly and those with dementia can be an overwhelming responsibility—one that can take 24 hours a day, seven days a week—additional support, even at added cost is a welcome relief.
• Market to caregivers and formal referral sources. Because adult day centers are not well known, marketing is a major challenge. Working with a marketing expert and center directors, program staff members described major caregiver market segments. Centers then tailored their marketing messages to specific audiences. They also learned to market to formal referral sources, including physicians, hospital discharge planners and social services agencies.
• Develop a working board of directors. Members of the board of directors are ambassadors in the community, lending legitimacy and respect to the organization. Because the board is ultimately responsible for the organization, including its financial resources, it should not delegate the responsibility for raising funds to anyone else—not to a foundation, not to an outside consultant, not to staff.

The resource center established at the end of the program has continued to provide technical assistance to states and adult day centers after RWJF funding ended. See Lessons Learned Report.

Study of the Nation's Adult Day Centers
Partners in Caregiving also sponsored a survey of adult day care centers in the United States in 2001–02.

Findings

• The number of adult day centers at the time of the study—3,407—fell far short of what was needed to serve the needs of chronically ill adults and their family caregivers. For more information, see the survey report, a map of state-level data and the Program Results.

³ U.S. Census Bureau, Statistical Abstract of the United States: 2006, 125^th edition, Washington, 2005.
⁴ Murtaugh CM, McCall N, Moore S and Meadow A. "Trends in Medicare Home Health Care Use: 1997–2001." Health Affairs, 22(5): 146–156, 2003.