Although implementation of mental health SDC programs on a larger scale may now be feasible, critical questions remain regarding how to make such an implementation successful for mental health care consumers, providers, policymakers, and public budgets. This report provides a review of available information on mental health SDC programs and presents several issues that may require further examination, discussion, planning and decision-making prior to SDC program implementation. Most of these implementation issues could be addressed in more than one way, and this report does not provide an exhaustive list of policy options. Rather, relevant issues are brought forward for further examination and discussion.
One set of issues relates to the chronic and episodic nature of SMI. Persons with SMI typically have ongoing psychiatric symptoms with periodic acute exacerbations and improvements that may differ widely across individuals.32 Especially during acute exacerbations, cognitive impairments and psychiatric symptoms can impede decision-making. Also, unexpected changes in life circumstances, such as the loss of permanent housing, are common and can be associated with dramatic changes in a person's need for service supports.
Variability over time in participants' acuity of illness, ability to make decisions, and life circumstances indicates the need for specialized features in mental health SDC programs, as compared with SDC programs for persons with physical disabilities. In SDC, participants and program staff share responsibility for modifying participants' treatment plans as participants' needs change, with program staff serving primarily in an advisory capacity. By itself, this arrangement may be inadequate to ensure that participants' basic needs are met at all times. As a result, programs need standard operating procedures for maintaining regular contact with participants and for involving providers when participants are too ill to make rational decisions about their care.
Some SDC program participants or potential participants may have severe and persistent cognitive and/or functional impairments.29, 30, 31 Consequently, SDC programs should have strategies that help such persons compensate for impairments that may be preventing them from self-directing their own care and engaging in a recovery process. Some potential SDC participants, especially persons who may have a long history of involvement in public mental health systems, may not initially feel comfortable with the notion of self-directing their own care. Especially for individuals accustomed to a representative payee culture, the transition to SDC and budget management represents a significant shift not to be undertaken lightly. SDC programs must consequently be prepared to offer education and targeted outreach. SDC programs must also be prepared to work with participants who have representative payees or conservators, persons who manage their clients' finances and spending. In addition, the impact on consumers of participating in and perhaps not being able to remain in SDC has implications as well and may impact recruitment strategies for SDC and clinician care for SDC participants.
To ensure that participation in SDC in fact results in greater choice for participants with behavioral health issues, the complexities associated with training participants in budgeting and financial management as well as the development of safeguards, such as advance directives in the event of changes in mental health status changes, must be addressed in the initial planning and implementation phases. The clinician, coach, or case manager must be able to rapidly implement a real-time shift in financial management, directly with the client and within the framework that alerts the payor to this shift.
Similarly, SDC programs will need to create protections for persons with SMI from coercion and victimization by fiscal intermediaries, service providers, or family members. One issue is the possibility of coercion from existing service providers, representative payees, or family members aimed at persuading a person with SMI not to participate in SDC. Coercion not to participate could be motivated, for example, by wariness of a loss of control over a potential SDC participant's decisions regarding treatment or spending or by concern that a potential participant will not receive adequate guidance in SDC and will consequently make poor decisions. Another issue is the possibility of interference with specific decisions by a SDC program participant around spending and choice of service providers. Fiscal intermediaries, service providers, or family members could have various motivations to interfere with a participant's decision-making, including financial incentives, stigmatizing beliefs about the participant's capacity for decision-making, or concern for a participant's welfare.
Ensuring that consumers obtain effective, high quality care and that public mental health care financing is used effectively will require additional supports and safeguards. SDC programs should help protect participants from vendors of services and products that may be ineffective or harmful. Making determinations regarding appropriate expenditures of SDC money is handled in diverse ways by different programs and requires some thoughtful decisions by those implementing the programs and the consumers participating in them.
SDC programs also must be able to assure the public that limited mental health financing is being used effectively in support of the mental health care needs of persons with disabilities. Some services or products that participants would like to purchase may be insufficiently related to recovery from mental illness or may not meet community standards for appropriate uses of public disability support. Moreover, to the extent that evidence-based treatments and supports are more cost-effective than interventions having no evidence base, the public's interest in effective use of public mental health financing must be balanced against the principle of self-direction. This suggests the need for explicit purchasing policies and a process for involving consumers and other stakeholders in selecting these policies.
The consequences for programs' budgetary costs and for obtaining financing needed to support programs' infrastructure must be considered in conjunction with nearly every aspect of program design. Implementation of mental health SDC programs on a larger scale would require a transformation of standards of practice in mental health care service delivery and a substantial upfront investment in training and system re-design. There may also be costs associated with creating and operating an administrative infrastructure that provides adequate oversight of spending by SDC participants. It is not yet known how much it will cost to create these infrastructures and it has not yet been determined who will be responsible for these costs.
Finally, policymakers must decide who will bear the financial risks associated with SDC programs. In traditional public mental health service systems, financial risks are usually borne by the state mental health authority and/or by Medicaid. These risks traditionally have been managed using a variety of regulatory controls, including especially pre-authorization of service use. However, in SDC programs, participants' expenditures are generally not subjected to the same types of regulatory controls. As a result, planners of SDC programs must decide who is responsible for financial losses that may occur when SDC participants require additional mental health services but have no money left over in their individual accounts. Planners have various options for addressing this risk, options which have varying advantages or disadvantages for consumers.
The following sections of this report provide an overview of mental health SDC programs and discuss implementation and financing issues, introduced above. The remainder of the report is divided into sections for the following topics:
- report methodology;
- main features of mental health SDC programs;
- critical issues in the design of SDC programs;
- results from research and evaluation studies of the costs and benefits of SDC programs for people with SMI; and