From 1992 through 2002, the Robert Wood Johnson Foundation (RWJF) funded Building Health Systems for People With Chronic Illnesses. It is a national program that encompassed a broad range of initiatives covering the full spectrum of medical, mental health and supportive service needs of people with disabilities and chronic health conditions.

RWJF designed Building Health Systems to address deficiencies in the nation's system to treat and serve individuals with chronic physical or mental impairment — some 99 million Americans at the time. These deficiencies — administrative, institutional, professional and financial — resulted in a system of care that was often fragmented, unresponsive, inappropriate, lacking in consumer choice and based in institutions, rather than occurring at home or in the community.

These barriers contributed significantly to the high cost of care for chronically ill people — estimated when the program began at $470 billion annually — representing an enormous part of the nation's total health care expenditure.

Key Results
In general, the program director believed that by supporting projects that strove to integrate care delivery and financing, Building Health Systems advanced the movement away from an acute-care focus within the health care system and toward a social health model of care for people with chronic conditions.

More specifically, the program created the following:

• A self-determination model for people with developmental disabilities, which was replicated by RWJF in a national program, Self-Determination for Persons With Developmental Disabilities. (See the Grant Results.)
• Models of care that integrated medical, social and long-term care services, along with their respective funding streams, for elders and people with disabilities.
• Models of care for children with special health care needs and their families that move care to the community provider level and offer a range of family supports.
• Models that integrate affordable permanent housing with health care, mental health care and addiction services, all of which are available onsite to tenants — including the formerly homeless, the frail elderly and people with disabilities.
• Projects aimed at overcoming barriers to employment for people with disabilities.

The Program
The RWJF Board of Trustees originally authorized the program in 1992 for up to $15 million. (Financial readjustments at RWJF in 1995 caused a $2 million reduction in the authorization.) To oversee the projects, RWJF established the Building Health Systems national program office at the Genesee Hospital in Rochester, N.Y.

In 1995, RWJF decided to transfer the program funds to the Center for Health Care Strategies in Princeton, N.J., which then became the national program office. (At the time, the Center for Health Care Strategies was also managing the Medicaid Managed Care Program for RWJF; the Building Health Systems move was intended to capitalize on the potential for synergy between the two programs.)

Thirty-two projects received a total of $14,454,287 in funding over five funding rounds. Building Health Systems encouraged a broad range of ideas and interventions to overcome the fragmentation, financing barriers and episodic care that characterized existing systems of chronic care. All of the grants targeted one or more of these population groups:

• People with physical or developmental disabilities.
• People with severe, persistent mental illness.
• Children with special health care needs.
• Frail, elderly individuals.

Key Lessons Learned
In 2005, Lindsay Palmer and Stephen Somers of the Center for Health Care Strategies conducted a review of the program with funding from RWJF for managing the program. Palmer and Somers focused on five projects that yielded especially useful lessons for future philanthropic and policy investments. The report, Integrating Long-Term Care, is available online.

The Lessons Learned section of this report provides greater detail. The report highlighted seven lessons:

1. Persevere when trying to get buy-in and cooperation from government agencies, despite the amount of time and patience required.
2. Stay with the slow and onerous processes of setting payment rates and integrating funding streams because accomplishing these can make dramatic differences in the quality and coordination of care.
3. Develop a quality assurance/improvement process during the design phase to protect, maintain, and improve consumer health outcomes and satisfaction.
4. Integrate social services with medical care to help increase consumers' motivation for maintaining better health.
5. Integrate behavioral health services into programs of acute and long-term care because people with chronic physical or mental impairments are at higher risk of behavioral health problems.
6. Form an interdisciplinary team of medical and social service professionals to improve the coordination of care for frail elders, reduce fragmentation of services, improve overall quality of life, and enable more clients to remain in their communities.
7. Facilitate consumer choice and self-determination to improve the quality of life for the chronically ill and frail elderly, and to achieve higher quality health care.