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Self-Directed Care: A Promising Path to Enhance Recovery for People with Serious Mental Illness
A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
People with serious mental illness (SMI) have conditions like schizophrenia, bipolar disorder, or depression. These individuals may use mental health services, such as medications or case management, that are funded by community mental health systems. Traditionally, consumers can only choose from the services and providers that are available at the agency where they’re enrolled, based on their personal recovery goals such as steady employment or going to school. Self-directed care (SDC) is an alternative approach in which people with disabilities use public funds to purchase goods and services of their choice. SDC has been successfully used by people with physical and developmental disabilities but has not been well-studied as an approach for people with psychiatric disabilities. In a recent NIDILRR-funded study, researchers tested SDC with a group of people who were receiving publicly-funded community mental health services. The researchers wanted to compare recovery outcomes, costs, and service satisfaction between those who received SDC and those receiving services from the traditional service delivery system.
Researchers at the University of Illinois at Chicago National Research and Training Center on Psychiatric Disability partnered with the Texas Department of State Health Services (DSHS) Mental Health Program to enroll 216 people with SMI in a two-year study. The participants were receiving community mental health services, and they either had no health insurance or they were Medicaid beneficiaries. The participants were randomly divided into two groups: an intervention group who received the SDC program (SDC group), and a control group who received services as usual.
The participants in the SDC group worked individually with SDC program staff called service brokers to create person-centered plans containing specific recovery goals. Then, they created budgets with specific items they wished to purchase that were intended to help them reach their goals. Each participant could include up to $4000 per year in their budget, which was the per-patient average cost for mental health services in the region, excluding medication, inpatient treatment, and crisis services. The participants could purchase “traditional” services, such as medication management, skills training, and psychotherapy, or “nontraditional” services, such as a bus pass, housing assistance, or wellness services like massage therapy or nutritional counseling. The participants in the control group received services that aligned with recovery goals, but were limited to what was available at their local mental health agency and could not purchase material goods or non-traditional services.
The participants in both groups completed questionnaires at the beginning of the study, and at 1 and 2 years after the beginning of the study. They answered questions rating the extent to which they felt they were recovering from SMI and meeting their goals; their self-esteem and sense of control over important outcomes in their lives; and the severity of SMI symptoms they experienced. At each time point, the participants were also asked if they held any form of paid work and if they were enrolled in college or trade school courses. To compare costs incurred by each group of participants, the researchers looked at records of which services the participants received in each group, and how much each service cost. Finally, the participants in both groups were asked how satisfied they felt with their services at 1 year and 2 years after the beginning of the study.
The researchers found that the participants in the SDC group had:
- Better recovery outcomes: The participants in the SDC group reported a greater increase than the control group in their perceptions of recovery, self-esteem, and sense of control over important outcomes over the 2-year study period. The participants in the SDC group also reported a greater decrease than the control group in mental health symptoms over the 2-year study period.
- Working toward goals: A higher percentage of the participants in the SDC group (20%) were working for pay by the end of the 2-year study period compared to the participants in the control group (12%). Also, a higher percentage of the participants in the SDC group (12%) were taking college classes, compared to the participants in the control group (1%).
- Equal costs, but different services: On average, participants in both groups received services costing about $2700 per year. Although there was no difference in costs, the participants in the SDC group chose different types of services from the participants in the control group. On average, the participants in the SDC group used less medication management, hospital stays, and case management than the participants in the control group, but they used more psychotherapy. The participants in the SDC group also spent about one-fourth of their budget on nontraditional services, such as services related to transportation, communication, housing, and health and wellness.
- Higher satisfaction: At the end of the 2-year study period, 60% of the participants in the SDC group said that they were “very satisfied” with their mental health services, compared with only 38% of the participants in the control group.
The authors noted that an SDC approach offers people with psychiatric disabilities a greater sense of control over their own recovery and allows them to select services that more closely align with their individual goals. In this study, SDC participants were more satisfied with the services they received and more likely to pursue their recovery goals than those who received traditional services, without greater cost. Mental health service providers and policymakers may wish to incorporate principles of SDC into their practices. In addition, it may be useful to further examine the types of nontraditional services that people purchase under SDC, to identify new services and programs that aid people with psychiatric disabilities in reaching their goals for mental health recovery.
To Learn More
The Rehabilitation Research and Training Center on Integrated Health Care & Self-Directed Recovery continues to study self-directed recovery for people with serious mental illness. Their Solutions Suite includes a manual and planning materials for individuals and their care teams at https://www.center4healthandsdc.org/self-directed-recovery.html
Learn more about self-directed care for people with SMI and other disabilities from Medicare https://www.medicaid.gov/medicaid/ltss/self-directed/index.html
To Learn More About this Study
Cook, J.A., et al. (2019) Mental health self-directed care financing: Efficacy in improving outcomes and controlling costs for adults with serious mental illness. Psychiatric Services in Advance. This article is available from the NIDILRR Collection under Accession Number J80323.
This project is also supported by the Substance Abuse and Mental Health Services Administration (SAMHSA).