RWJF - Goals Update 2001

     After a survey taken early in 2001 showed scant interest in chronic care—only 6 percent of respondents gave “elder care issues” as their top health care concern—the Foundation funded a $3.4-million project at Georgetown University to promote long-term care policy development and debate. The project will identify and elucidate service delivery and financing problems, then develop and disseminate solutions. A separate grant will generate data on the impact of chronic conditions, and contracts have been put in place to design a national public engagement campaign on chronic illness.
     When people have a long-term condition, the responsibilities for caregiving usually fall to the family. A $232,000 grant to the Family Caregiver Alliance in San Francisco will enable the group to work with state policymakers on concrete steps to help family caregivers.
     Frail at-risk individuals may need assistance to remain living at home. The Foundation’s Faith in Action^® programs have supported more than 1,300 local interfaith coalitions, which deploy volunteers to provide a wide range of in-home services. The program moved its National Program Office to Wake Forest University School of Medicine, under the direction of Burton Reifler, M.D. In another 2001 milestone for RWJF’s community-level grantmaking, the Coming Home^® program awarded grants to nine sites to develop affordable assisted living projects for low-income seniors, particularly those in small towns and rural areas.
     One of the most promising models for providing a continuum of services to people needing chronic care is PACE (Program of All-Inclusive Care for the Elderly), which grew out of a number of innovative projects the Foundation has funded over the past decade. Although in 1997 it became an optional benefit under Medicaid, the PACE model unfortunately has not been widely replicated. RWJF provided $748,000 in funding to the National PACE Association to work on wider adoption. Another RWJF-funded service delivery program, Improving Chronic Illness Care, which works with health plans and provider groups, awarded 14 grants nationwide.
Percentage of Disabled Adults

    Building on two previous RWJF national programs, several 2001 grants work toward giving the frail elderly or the disabled more control over the services they need. Some examples: a $1.5-million grant to the National Association of State Units on Aging (Washington, D.C.) will promote consumer direction in home and community services; a $586,000 grant to the Center for Health and Long-Term Care Research (Waltham, Mass.) will examine how disabled elderly individuals make decisions regarding care covered by long-term care insurance; a $5-million grant to Families USA Foundation (Washington, D.C.) will enable the creation of an ombudsman program support center; and a $398,000 grant to the Foundation for Accountability (FACCT) in Portland, Ore., will help health care leaders understand developments in consumer-oriented health services.
     People with chronic illnesses have constant encounters with the health care system. When something goes wrong, their already compromised health status can trigger catastrophe. The Foundation funded several efforts to promote patient safety in 2001. A project with the Academy for Health Services Research and Health Policy (Washington, D.C.) will assess major health purchasers’ efforts to encourage specific safety improvements. Grants under the Pursuing Perfection program aim to help hospitals and physician organizations improve patient outcomes dramatically. RWJF also funded a $399,000 project with the National Committee for Quality Assurance to develop actionable measures of the quality of chronic illness care, and projects to improve home health care and hospice services.
     Interactive technologies such as the Internet, interactive television or handheld devices hold great promise for reaching large numbers of people wherever they may reside, improving the quality of services and access, and optimizing the use of health care and public health systems. Much needs to be learned about the feasibility, acceptability and appropriate use of these modalities and the Board of Trustees has authorized a five-year, multifaceted assessment program to be undertaken by RWJF staff.
     In the end-of-life arena, the Foundation in 2001 renewed support for the landmark Education for Physicians on End-of-Life Care (EPEC) project, now housed at Northwestern University; continued funding to help hospitals and health systems establish palliative care programs through the Center to Advance Palliative Care at New York University’s Mount Sinai School of Medicine; and launched an initiative within the Last Acts^® campaign to provide technical assistance to the more than 300 community coalitions that responded to the previous year’s PBS series “On Our Own Terms: Moyers on Dying.”
     Finally, several Foundation grants went to projects concerned with specific disorders—Alzheimer’s disease, depression, HIV/AIDS, attention deficit hyperactivity disorder, diabetes, and pediatric asthma—all of which try to manage these diseases better and to work with patients and families to improve their quality of life.
     Some of the initiatives anticipated for 2002 include efforts to improve the quality of chronic care, focus attention on the paraprofessional workforce, and raise the profile of chronic care and end-of-life issues.