Self-Directed Care (SDC) programs give participants the authority of using public funds to purchase goods and services for their own recovery. This model has been successfully implemented for individuals with physical or intellectual disabilities. Recently a handful of states have implemented SDC programs for individuals with Serious Mental Illness (SMI). Preliminary research including an RCT has demonstrated promising results. In 2017, New York State (NYS) implemented a pilot program of SDC for individuals with SMI under an 1115 Medicaid Waiver. Two community agencies in NYS are participating in the SDC pilot with oversight by the NYS Office of Mental Health (OMH). This is a process evaluation of the first year of program implementation including qualitative perceptions of the SDC program by participants and other stakeholders. Lessons learned that could impact expansion in NY and other states are presented.
Characteristics of program operations including participants, recovery plans and budgets are summarized. Focus groups were conducted with 22 SDC participants, and interviews with 8 SDC and 8 OMH staff. Semi-structured interviews asked about the SDC process, challenges, and participant outcomes. Content analysis was used to analyze this data. Descriptive analysis was used for quantitative data (participant demographics, recovery goals, purchases) collected through an SDC portal.
Over 200 participants have been enrolled in NYS SDC. Participants worked with SDC staff to develop individual recovery plans and budgets. Following approvals, funds were loaded on credit cards and purchases made. Areas most commonly addressed by participant recovery goals were physical wellness, mental health and social relationships. Most purchases were of goods rather than services. Feedback from participants was overwhelmingly positive with many reporting that the process of developing a recovery plan changed their thinking about their lives. Participants also reported improvement in self-care (fitness, health, nutrition); increased opportunities for vocational and other pursuits; improved mental health and quality of life; and more satisfaction with services. Challenges included problems with the purchase process. SDC and OMH staff presented conflicting perspectives on issues such as spending of public funds for services and goods not available to non-participants; and individual self-determination versus fiscal oversight. These issues are reflected in the ongoing development of policy in various areas including the process of SDC (e.g., linking spending to recovery plans); purchasing policy (e.g., balance of goods and services); the roles of SDC agencies, administrative and fiscal oversight; and the function of SDC staff.
SDC is a promising program than can help individuals with SMI negotiate an individualized path to recovery and improve financial and housing stability and physical and mental health, provide opportunities for employment or other valuable pursuits, and increase the utility of outpatient services. However, SDC has inherent contradictions related to the perception of the use of public funds to support individual goals through purchased goods and services. The experience of stakeholders in the NYS SDC pilot can help to inform the development of viable and effective SDC programs going forward, promoting recovery for persons with SMI.