Feasibility of Expanding Self-Directed Services to People with Serious Mental Illness. 5.4. Issues for Future Research


Research on SDC programs that serve persons with SMI is at an early stage. This report raises a number of program design and financing issues that have not been addressed in prior research studies and that may be critical when implementing SDC on a larger scale. Some of the issues requiring further exploration are the following:

  • How does entry into SDC affect new participants' spending on mental health care and other medical care and how does entry into SDC affect the quality of the mental health and medical care services they receive?

  • What can SDC participation and spending patterns tell us about SMI consumers' preferred interventions and services and providers?

  • How does participation in SDC affect participation in competitive employment and education, and how does it affect participants' ability to live independently?

  • How do consumers' mental and physical health outcomes in SDC compare to their outcomes in traditional mental health care?

  • How should the mental health SDC approach be adapted to facilitate integration of somatic and mental health services for persons with chronic mental and physical health conditions?

  • What functional and cognitive limitations of consumers with SMI are associated with the likelihood of participating in SDC and with engagement in a recovery planning process, and how can SDC programs help ensure equitable participation in SDC in relation to illness and disability severity?

  • What are the most effective and cost-effective approaches to training and supervising new SDC coaches and what specialized training is needed by peer-specialist providers?

  • Do SDC programs facilitate or impede participants' use of evidence-supported practices, and what decision-making supports or other program approaches may guide participants toward use of evidence-based care?

  • Does participation in SDC result in more active consumer participation in clinical decision-making, and how can SDC programs encourage shared decision-making processes?

  • What are the implications for public budgets and Medicaid costs of large-scale participation in SDC by persons with SMI, and how should budgetary risks be addressed in the design of programs?

  • What technologies can be brought to bear in helping SDC programs manage participants' needs for physical health care services and crisis services, and how should these technologies be implemented in SDC programs?

Current research evidence on SDC programs offers very little insight into the longer term benefits and risks of SDC programs, and provides essentially no guidance on the design of SDC programs. New data pertaining to some of the research questions listed above may be available within the next 2 years following the completion of two ongoing trials of SDC programs in Texas and Pennsylvania. These two research studies are likely to provide new information especially in relation to effects of SDC on mental health symptoms, quality of life, and utilization of mental health services.

Additional large-scale demonstrations will be needed to establish the feasibility of implementing SDC within multiple sites and making it available to any mental health care consumer, irrespective of their level of impairment. Such a large-scale evaluation would likely identify many implementation issues, including challenges associated with making SDC continuously accessible to people who have frequent episodes of acute need for psychiatric care. A larger scale demonstration could also be used to try out different program design features and assess their strengths.

Another issue that has received scant attention in research on SDC is the potential of SDC to help young adults navigate the path to independence in adulthood and reduce the need for long-term disability supports. Young persons with SMI who are entering adulthood and adapting to adult roles and responsibilities often do not have access to those supports that are needed to live independently. Rigidities in mental health payment systems would normally impede young adults from using their public mental health funding to, for example, purchase clothing for work, a means of transportation, and a place to live. Without these supports, many young adults who have a SMI may be left with few options for obtaining needed income and mental health care in adulthood except to enroll the Supplemental Security Income (SSI) program as an adult. Unfortunately, enrollment in SSI as an adult financially discourages participation in competitive employment and education. SDC programs consequently have the potential to offer young adults a wider range of supports and to couple these supports with coaching on how to successfully make the transition to adulthood.

A special population for whom the mental health SDC approach could be customized and tested is adults with SMI and chronic physical health conditions. The SDC approach could be particularly helpful in paying for programs that integrate mental health care with physical health care services. In many states' Medicaid programs, mental health care is "carved out" from general medical care for physical health conditions. This usually implies that financing for general medical care cannot be combined with financing for mental health care in order to provide integrated medical and mental health services. This separation often results in poor quality care and health outcomes, because emotional and behavioral problems can impede medical treatment and vice versa. SDC is more flexible in terms of payment, and it consequently offers the potential to pay for providers from both the general medical and mental health sectors of the health care system.

Future research on mental health SDC programs should also seek to examine whether SDC is a transformational approach in mental health care. In principle, SDC allows public financing for mental health care to flow to those providers and services that offer participants' the best opportunities for recovery from a mental illness and for improving the quality of their lives. If implemented on a large-scale, SDC would consequently be expected to shift public financing towards innovative services and providers. SDC would also encourage other providers within the same system to adopt similarly recovery oriented practices, or face the consequences of losing their customers. Finally, SDC would be expected to increase the bargaining power of participants in interactions with mental health care providers, and consequently should result in more shared decision-making. These hopeful, albeit entirely theoretical, propositions should be entertained in future examinations of the SDC approach.

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