Origins of the 5-Percent Set-Aside Policy to Address Needs of Persons with Early Serious Mental Illness
Scientific Motivation, Vision, and Goals for the Program
The 5-percent set-aside policy was conceived as a legislative initiative to promote greater access to evidence-based services for people with early serious mental illness (ESMI),1,a population with a large unmet need for health care that stems from its transitional age (i.e., transitioning from child to adult treatment programs), complex health care needs, and inadequate insurance coverage.2, 3 The legislation directed U.S. Department of Health and Human Services (HHS) Substance Abuse and Mental Health Services Administration (SAMHSA) to require that states set-aside 5 percent of their Mental Health Block Grant (MHBG) allocation to support evidence-based programs for this population starting in fiscal year (FY) 2014. To address potential concerns that the policy would divert funds from existing programs, Congress provided an increase to the MHBG over the FY 2013 level to help states meet the new requirement. SAMHSA has collaborated closely with the HHS National Institute of Mental Health (NIMH) throughout the implementation of the policy.
The House and Senate reports that accompanied the legislation made generic reference to treatment programs for first episode psychosis (FEP). However, in its guidance to states,1 SAMHSA made reference to a specific treatment model, coordinated specialty care (CSC) for FEP, directing states to a white paper released by NIMH in April 2014 titled Evidence-Based Treatments for First Episode Psychosis: Components of Coordinated Specialty Care.4, b CSC is an early-intervention program that has been widely adopted by a number of industrialized countries with health care systems that, compared with the United States health care system, permit greater flexibility in the financing of complex interventions.5, 6 The intervention utilizes a multidisciplinary team-based and outreach-capable approach to recruit, engage, and treat young persons ages 15-25 with FEP who have been ill for no more than five years. CSC comprises several evidence-based treatment components, including assertive case management, individual or group cognitive-behavioral psychotherapy, supported employment and education services, family education and support, and low doses of selected antipsychotic agents. The approach is grounded in a patient-centered, youth-friendly, recovery-oriented paradigm that emphasizes shared decisionmaking and aims at preventing social and occupational disability.4 Although CSC shares some important features with assertive community treatment (ACT)--the evidence-based practice for the treatment of chronic serious mental illness (SMI)7 (team-based nature, use of outreach, and some amount of case management)--CSC has a greater focus on education and employment, and it is more time-limited and office-based than ACT.
The set-aside policy came about as a result of a number of recent developments in the scientific and public policy arenas.8
First, a critical mass of scientific evidence has emerged on the potential public health significance of shortening the duration of untreated psychosis (DUP) among people with FEP, given suggestive evidence of a positive association between interventions designed to reduce DUP and both short-term and long-term outcomes including symptom severity and disability.9, 10, 11, 12 Evidence from abroad and some academic centers in the United States suggests that comprehensive early intervention programs have beneficial short-term effects.6, 13, 14 At the same time, the NIMH-funded Recovery After an Initial Schizophrenia Episode (RAISE) initiative launched in 2008 (http://www.nimh.nih.gov/raise) has begun generating evidence on the feasibility and short-term effectiveness of CSC in community mental health centers (CMHCs) in the United States through its two research programs (Early Treatment Program/Navigate and Implementation Evaluation Study [NAVIGATE]/Connection).15, 16, 17
Additionally, a series of high-profile acts of violence perpetrated by young persons with untreated SMI (SMI) has raised awareness of the size of the unmet need for high-quality care for this population.18, 19, 20
The implementation of the ACA and expansion of parity laws are expected to have a significant impact on coverage and access to critical services for people with ESMI and may facilitate entry into programs tailored to meet their needs. Key provisions of these laws include the option of Medicaid expansion; the 2010 provision that allows young adults 19-25 to remain enrolled as dependents of their parents' insurance policies; elimination of exclusions for pre-existing conditions; access to subsidized private insurance; inclusion of mental health and substance abuse benefits in the package of essential health benefits; extension of parity protections to marketplace plans and Medicaid managed care; and enhancement of the optional Medicaid authority 1915(i) that allows states to provide home and community-based services.2, 21, 22 However, there is also recognition that an infusion of public funds is needed to furnish the public mental health system with a network of evidence-based programs for people with ESMI and ensure their sustainability. Moreover, although more ESMI services may now be paid for by Medicaid or private insurance, policymakers are aware that some key services for this population are unlikely to be well covered (or covered at all) by Medicaid or other insurance.23
SAMHSA's Requirements for the Use of Set-Aside Funds
In its guidance to states,1 SAMHSA required states to revise their two-year MHBG plan to describe the specific ESMI disorders they sought to address and how they would utilize the set-aside funding. States were encouraged to fund CSC programs for people with FEP but were given the options of funding other evidence-based interventions and targeting their programs to individuals with ESMI other than FEP. States could use the funding either to develop new programs or, for states with previous treatment infrastructure, enhance existing programs. States were also encouraged to leverage funds "through inclusion of services reimbursed by Medicaid or private insurance."
The guidance informed states that SAMHSA and NIMH would "hold a national webinar to inform states of the evidence-based components of CSC for FEP" and that SAMHSA would make technical assistance and resources available to states during the implementation period.c The guidance also informed states that the set-aside policy "includes an initiative for data collection related to demonstrating program effectiveness," with language indicating that "technical assistance and guidance on the expectations for data collection and reporting" would follow.
SAMHSA explicitly recognized that states would vary in their capacity to implement the new programming because of variation in the actual size of the 5-percent allocation. The agency also recognized that "states may need to dedicate the first year to planning, training, and/or infrastructure-development while targeting program implementation to the second year of the plan." States' MHBG plan revisions were required to provide information on the need for ESMI services and justification for the selection of the target population, the activities proposed, and the budget.
Purpose of the RAND Study
Given the latitude that states have with respect to use of the set-aside, NIMH, HHS SAMHSA, and the HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE) sought to better understand how the funds are being used within states, particularly the extent to which the policy has led to the development or expansion of evidence-based ESMI care. RAND conducted a series of case studies across 12 states to provide an early assessment of the set-aside policy. Discussions focused on three specific topics:
Strategies used by state agencies administering the MHBG funds to advance ESMI programs.
Intervention models followed by the ESMI programs supported by set-aside funds (grantees).
States' plans for evaluating grantees.
Organization of the Report
The remainder of the report is organized as follows. First, we describe our case study methodology, including our approach for selecting case study states and holding discussions. Second, we present our case study findings, including: (1) important state-specific context; (2) strategies used to implement the policy by each State Mental Health Authority (SMHA), the agency that administers the MHBG; (3) implementation strategies used by grantees; (4) evaluation strategies used by SMHAs and grantees (including plans for the evaluation of fidelity and outcomes); and (5) barriers and facilitators to implementing ESMI programs. We conclude with a summary of our findings. We note that although each state has a specific name for its SMHA, we use the generic term SMHA throughout for clarity.
Approach for Selecting Case Study States
Selection of the states for the study was done by NIMH and ASPE. NIMH reviewed the 50 states' plans for using the set-aside funds, as proposed in the states' revised FY 2014-FY 2015 MHBG plans, and rated a subset of the states on whether they: (1) had one or more operational CSC or other evidence-based ESMI program as of December 31, 2013, based on NIMH's independent knowledge of a research clinic serving individuals with ESMI, evidence from the Early Assessment and Support Alliance (EASA) or Early Psychosis Prevention and Intervention Center (EPPIC) Directories that an ESMI clinic exists, or evidence that a community clinic was established following involvement in the RAISE study; (2) participated in the NIMH RAISE study; (3) planned to focus on FEP or other ESMI and the treatment model was CSC or an evidence-based variant;24 (e.g., EASA, EPPIC, Portland Identification and Early Referral [PIER], Prevention and Recovery in Early Psychosis [PREP]); and (4) planned to use funds to support already existing programs, establish new programs, develop infrastructure (planning activities, strategic hires, training, etc.), or other unrelated activities in FY 2014-FY 2015.
Twelve states were eventually selected, eight of which were also the focus of a parallel study assessing the impact of the Affordable Care Act on states' use of their MHBG funds. The 12 states were classified into three tiers according to their stage of implementation of ESMI programs, and among states with pre-existing ESMI programs, whether the primary use of the set-aside funds was to expand those or develop new programs. The three tiers are defined as follows (see Figure 1):
Tier 1: States that had at least one operational ESMI program by December 31, 2013, and are primarily using the set-aside funds to expand pre-existing program(s).
Tier 2: States that are primarily implementing new ESMI programs.
Tier 3: States without pre-existing programs that are in the infrastructure-development stage--there are no ESMI programs in operation (i.e., serving clients) as of the end of end of the study's data collection period (June 2015).
|FIGURE 1. Map of Case Study States by Implementation Tier|
|States with the darkest shading represent Tier 1 states; states with the lightest shading represent Tier 3 states.|
Given the focus of the study on the impact of the set-aside funds, the Tier 2 states were of greatest interest because the set-aside funds were expected to have the greatest impact in states that did not have prior ESMI programs but had the capacity to establish such programs with the set-aside funds.
The final set of 12 case study states, by tier, is as follows (also see Figure 1):
- Tier 1: California, Connecticut, and New York.
- Tier 2: Idaho, North Carolina, Texas, Virginia, and Wisconsin.
- Tier 3: Colorado, Nevada, Iowa, and Washington.
Approach for Holding Discussions with State Officials and Grantees
Information for the case studies was collected through a series of discussions with key informants, both over the telephone and during site visits. An initial contact was made with the mental health commissioner and mental health planner, who are the key health officials with the SMHA. This initial contact was followed by a phone discussion that covered the state's strategy for use of the set-aside funds. Based on the results of the initial discussion, a decision was made whether to conduct a site visit to the state to observe provider organizations, also referred to as grantees, and hold additional discussions with those parties, or to conduct follow-up discussions with grantees by phone. States in which the set-aside funds had been used to establish newly operational ESMI programs (i.e., Tier 2 states) were prioritized for site visits. States that were still in the planning, training, and infrastructure-development stage and did not have operational ESMI programs (Tier 3) were not directly targeted for site visits. For states with mature ESMI programs (Tier 1) that were not significantly affected by the set-aside funds, we conducted longer telephone discussions. All discussions lasted between one and two hours on average (site visits consisted of multiple discussions lasting 1-2 hours). Details regarding the methods used for each state are provided below and in the Appendix (see State-Specific Case Study Methods and Appendix Table A1).
In collaboration with ASPE, we prioritized the selection of ESMI providers for site visits to achieve a balanced sample with respect to:
Diagnostic mix of population served (i.e., FEP-only, any early psychotic disorder, any ESMI), because the empirical evidence is strongest for FEP but the policy allows for the funds to be used in the care of any ESMI.
Mix of ESMI models (i.e., CSC, CSC variant, single-component programs, other programs), because the policy is not prescriptive with regard to model despite favoring CSC.
Size mix, because size may impact fidelity and sustainability of the program.
Provider type mix (e.g., hospital system, CMHC, federally qualified health center), because provider type also could affect fidelity and sustainability of the program.
However, because most states had two ESMI providers at most (and because there was not much within-state variation for those that had more than two regarding diagnostic mix, program type mix, size mix, or provider type mix), the main criterion used for selecting providers was proximity to the state capitol, since each site visit also included in-depth discussions with state officials (see Table 4 for a list of grantees included in the study).