Feasibility of Expanding Self-Directed Services to People with Serious Mental Illness. 6. Conclusions


Compared to traditional mental health care, the SDC approach has the potential to offer persons with SMI greater control over the selection of services and providers and greater freedom to choose those recovery supports that they believe will make the greatest difference in their lives. Although information relating to the effects of SDC is incomplete, participation in SDC could be expected to result in greater consumer satisfaction with services and providers, higher quality of life for consumers, and more consistent engagement in recovery planning by consumers. SDC programs, if implemented on a large-scale, might also be expected to shift payments towards those service providers who offer recovery oriented, person-centered services and might shift spending towards innovative services that integrate (i.e., bundle together) the various services needed by persons with SMI.

Implementation of SDC in programs serving persons with SMI will require further customization of the conventional SDC model to ensure equity in program access as well as program integrity and sustainability. In relation to equity, a key concern is that persons with SMI who have previously been discouraged from active participation in decisions about their own care will either not be viewed as a candidate for SDC or will view SDC as a risky proposition, and consequently will not take advantage of the opportunity offered by SDC. To counter these possibilities, SDC programs must offer outreach and education to potential participants and decision-making supports to participants. However, it must also be recognized that participation in SDC programs should be entirely voluntary, and that many consumers who are offered SDC may prefer to remain in a traditional mental health program rather than enter a SDC program.

In designing SDC programs, mental health system leaders must successfully balance participant autonomy with the need for public accountability. Public accountability will require programs to ensure that participants receive equal or better quality of mental health care in SDC compared to traditional mental health programs, participants' individual purchases meet a public standard of reasonableness for persons receiving public disability supports, participants are not victimized by venders of products and services, and participants remain safe during periods of acute psychiatric crisis. This balance could be achieved in a variety of ways, all of which will involve some form of administrative review of providers and purchases. Achieving this balance may also require use of personnel and technologies for regular monitoring of participants' health status and administrative procedures for obtaining needed supports during periods of crisis.

In relation to ensuring public accountability, one approach that should be explored is for a state agency or the managed care company or fiscal intermediary serving as the state's agent to design the boundaries of the marketplace accessed by SDC participants. The marketplace design would include an approval process for vetting service providers, a list of products and services that are approvable for purchase, and rules and procedures for administratively reviewing proposed purchases and for appealing administrative decisions. SDC participants would then have the authority to exercise choices within this virtual marketplace, and the marketplace could be amended as participants' needs or other circumstances change. If such an approach is pursued, mental health consumers or their advocates clearly should be partners in designing the marketplace and in reviewing its adherence to the SDC principles.

Any conclusions regarding the impacts of SDC on mental health care costs or other public costs for persons with SMI are pre-mature given that almost no reliable information on cost impacts is available. A large-scale, rigorously designed demonstration trial of SDC compared to traditional care would be expected to yield important new information about the impacts of mental health SDC on mental health care costs and other policy-relevant outcomes. However, even a large-scale demonstration would not be expected to yield firm conclusions about the impacts of SDC on public budgets, as these effects could vary dramatically depending on how SDC programs are implemented and managed.

The 2010 ACA removed key barriers to financing mental health SDC programs using Medicaid and created new mechanisms for state Medicaid plan options that must include person-centered planning and individual budgets. Under new rules created by the ACA, states can offer an expanded array of HCBS to persons with SMI (under a 1915(i) state plan amendment) irrespective of whether these persons meet "an institutional level of need." States also do not have to demonstrate budget-neutrality in order to obtain approval for the 1915(i) state plan amendment. Both of these changes substantially improve the chances that states will re-assess the feasibility of implementing SDC programs designed for persons with SMI. Whether or not states will utilize these options is uncertain. Two ongoing randomized trials of the SDC approach may soon provide critical new information about the risks and benefits of SDC, which may prove helpful in designing the next generation of mental health SDC programs.

Future Medicaid-based mental health SDC models could look quite dissimilar to prior pilot and demonstration mental health SDC programs. To make SDC a usual component of mental health care available to many thousands of Medicaid beneficiaries with mental health disabilities, previous mental health SDC models will likely have to be adapted to account for at least four constraints in Medicaid. First, future programs will have to be made consistent with Medicaid regulations covering allowable goods and services and participating providers, regulations which may limit the types of goods and services that can be financed. Second, rules around eligibility for SDC will have to be established, as Medicaid plans generally limit eligibility for specialized mental health programs to those persons who meet pre-specified administrative criteria for need. Third, SDC programs will have to be replicable and scalable (i.e., they will have to be designed for dissemination and enrollment growth) without jeopardizing the integrity of public mental health services. Fourth, SDC programs will have to be sustainable within prevailing Medicaid cost constraints. Adaptation to these constraints could result in a substantial evolution of previous mental health SDC program models.

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