Participant direction is a movement that has transformed supportive services in many states across the country and many different payment systems.”—James R. Knickman PhD, former Vice President for Research and Evaluation at RWJF
“This approach gives people with disabilities more freedom and responsibility in the same way that all of us want to be in charge of our lives and our choices. It lets the individuals themselves decide how to best use the Medicaid dollars they are already entitled to.”—Tommy G. Thompson, HHS Secretary during the Cash & Counseling demonstration phase
Dates of Program: October 1996 through February 2013
Field of Work: Fostering the development of participant-directed home and community-based services for people with chronic disabilities
Problem Synopsis: Frail older adults and other people with disabilities who receive Medicaid faced many challenges in getting the personal assistance services—help at home with things like bathing, dressing, grooming, preparing meals, and housekeeping—they needed. At the same time, increased spending for long-term care led to the need for more cost-effective personal assistance services.
Synopsis of the Work: Cash and counseling, now called participant direction, is an approach to long-term care personal assistance services in which the government gives people cash allowances to pay for the services and goods they feel would best meet their personal care needs and counseling about managing their services.
The Cash & Counseling national program introduced or expanded participant-directed personal assistance services for frail older adults with disabilities and other people with disabilities in the Medicaid programs of 15 states. The program was a joint venture between the Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services.
Cash & Counseling had a demonstration phase and a replication phase. During the demonstration phase, Arkansas, Florida, and New Jersey developed and implemented programs comparing the cash and counseling model with the traditional agency-directed model for delivering personal-assistance services. Participants were randomly assigned to the treatment group (cash and counseling) or the control group (agency-based personal-assistance services). Mathematica Policy Research, Inc., in Princeton, N.J., conducted a rigorous, independent evaluation of the demonstration program. During the replication phase, 12 states implemented the model developed during the demonstration phase. As the main users of personal assistance services, older adults were a key focus. The RWJF Board of Trustees authorized the program for $18 million.
When the program ended in 2009, RWJF and The Atlantic Philanthropies funded the National Resource Center for Participant-Directed Services at Boston University to continue to provide technical assistance to the field. RWJF’s contribution to the program and its resource center totals $24.4 million.
The 15 states enrolled about 13,500 Medicaid beneficiaries with disabilities in cash and counseling programs. All of the states have continued their participant-directed programs.
The evaluation of the demonstration phase found:
- Cash & Counseling significantly reduced the unmet needs of Medicaid consumers who require personal assistance services.
- Cash & Counseling participants experienced positive health outcomes.
- Cash & Counseling improved quality of life for participants and their caregivers.
- Medicaid personal care costs were somewhat higher under Cash & Counseling, mainly because enrollees received more of the care they were authorized to receive. These increased costs were partially offset by other cost savings in institutional and other long-term care.
- Cash & Counseling need not cost more than traditional Medicaid personal care programs if states carefully design and monitor their programs.
- The Cash & Counseling national program created champions in the federal government for participant-directed services and contributed to the spread of these services through changes in policy, law, and regulation. For example, changes to policies of the Centers for Medicare & Medicaid Services and the Deficit Reduction Act of 2005 made it easier for states to offer participant-directed programs.
The Resource Center
- The National Resource Center for Participant-Directed Services delivers technical assistance to participant-direction programs; offers training and toolkits on building participant-directed options; and coordinates research and policy efforts to spark the expansion of programs.
- Its National Inventory of Participant Direction Programs provides outcome measures to determine whether the center’s work is having an impact on the field, tracks growth in the number of programs and participants (the 2013 inventory shows 835,000 participants in 277 programs across the country), and participant characteristics, and offers a national data set that can inform participants, researchers, and policymakers. The Facts and Figures report, which shares highlights and general findings from the National Inventory, is available on the center’s website.
- Key projects of the center are training and technical assistance to the VA Medical Centers for its Veteran-Directed Home and Community-Based Services Program and a demonstration and evaluation of self-direction in behavioral health, co-funded by RWJF, the federal Substance Abuse and Mental Health Services Administration, and the New York State Health Foundation.
- In 2013, the center conducted two studies to assess the state of participant direction in Medicaid managed care settings and in programs that integrate services provided to people eligible for both Medicare and Medicaid. Findings of the studies include a lack of standardized requirements; inconsistent service coordinator training; and a lack of quality indicators and data reporting.
Recommendations include developing best practices to guide effective program design and establishing quality measures and reporting requirements.
Cash & Counseling improved quality of life for disabled Medicaid participants and their caregivers