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The low rate of employment for adults with mental illnesses is alarming. People with mental illnesses have one of the lowest rates of employment of any group with disabilities—only about 1 in 3 is employed. The loss of productivity and human potential is costly to society and tragically unnecessary.
— New Freedom Commission on Mental Health (2003, p. 29)
I. INTRODUCTION
Low employment rates among people with mental illnesses are especially troubling given that surveys show the majority of adults with serious mental illnesses actually want to work, and many of them could work with the right kinds of help. Unfortunately, limited treatment options in many communities across the country, and limited knowledge of such options, mean that many people with mental illnesses go without proper treatment or recovery-oriented, scientifically proven interventions (Hall et al. 2003). Even when they do receive some services, 30 to 50 percent report serious problems with the access, timeliness, quality, or safety of the care and supports,1 and 40 percent report fear of losing health or disability income benefits as a barrier to work.
Many people with serious mental illnesses rely on government disability benefits to survive. Those that qualify can receive Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), or both (Bilder and Mechanic 2003). Administered by the Social Security Administration (SSA), the SSI program is a means-tested income assistance program, while SSDI is a social insurance program with benefits based on past earnings.2 In a recent survey sponsored by the National Alliance for the Mentally Ill (NAMI), two-thirds of respondents with a mental disorder reported not working and over half were relying on public programs for cash assistance, health care, and other benefits (Hall et al. 2003). The vast majority (over 85 percent) was of working age and a majority reported a strong interest in working. Unfortunately, many SSI and SSDI beneficiaries live at or below the poverty line, and over the past decade the number of beneficiaries with psychiatric disabilities has increased faster than each program's overall growth rate. Individuals with serious mental illnesses now represent over a quarter (28 percent) of all SSDI recipients, and they account for the single largest diagnostic group (35 percent) on the SSI rolls.
Many beneficiaries with mental illness who have a strong desire to work nevertheless continue to seek the protection and security of disability benefits, not only because of the income such benefits provide but also for the health care coverage that comes with it. Further complicating matters is that few jobs available to people with mental illnesses have mental health care coverage, forcing individuals to choose between employment and access to care. These barriers, coupled with the limited treatment options described earlier and negative employer attitudes and even discrimination when it comes to employing people with serious metal illness, help "explain" the very rates of low labor force participation among people with psychiatric disabilities.
To investigate the extent to which beneficiaries with serious mental illness can indeed work, SSA has initiated the Mental Health Treatment Study (MHTS). Major advances in science and service delivery over the past two decades have led to a virtual revolution in how mental health and illness are understood and managed. At a time when the Surgeon General finds that less than one-third of adults with a diagnosable mental disorder receive treatment in any given year (US Department of Health and Human Services 1999), a range of effective, well-documented treatments have been developed and are now available.
The general goal of the MHTS is to determine the extent to which eliminating all programmatic work disincentives, establishing an accurate diagnosis (including identifying and treating any confounding mental/physical conditions), and delivering state-of-the-art mental health treatment along with appropriate employment supports leads to better employment outcomes (and other benefits) among people with serious mental illnesses receiving SSA disability benefits. The planned demonstration is authorized under Section 234 of the Social Security Act (42 U.S.C. 434).
The purpose of this report is to provide a summary of the first stage of the MHTS development, which includes an expert review of key issues and recommendations needed to support a pilot demonstration (and later a national study). This study is the first step of the demonstration's design stage and provides detailed recommendations on how best to implement and pilot the demonstration in six to eight states based on criteria developed by SSA and its federal partners.
For this initial phase the Urban Institute, under contract with SSA, identified and convened a high-level Technical Advisory Panel (TAP) charged with making initial recommendations on the general parameters of the MHTS, especially on the actual intervention or "treatment" services. The TAP was drawn from the fields of psychiatry, psychology, research, government, the nonprofit sector, the insurance industry, and consumer organizations. It included individuals with expertise in the following areas: mental health care financing, mental health treatment, research design, research ethics, state mental health systems, disability management, vocational rehabilitation, employment services, consumer perspectives, provider perspectives, employer perspectives, and disability benefits. The TAP members and an expert consultant included:
- Deborah Becker, Assistant Research Professor and Director of Supported Employment Programs, New Hampshire-Dartmouth Psychiatric Research Center, Dartmouth Medical School.
- Dale Dutton, CEO, Noble Solutions, Inc. and former National Director of the Commission on the Accreditation of Rehabilitation Facilities (CARF). He is also the parent of a young adult currently receiving SSI and DI.
- Laurie Flynn, Senior Research and Policy Associate, Division of Child and Adolescent Psychiatry, Columbia University College of Physicians and Surgeons, and former President of the National Alliance for the Mentally Ill (NAMI).
- Kevin Hennessy, Science to Service Coordinator for the Substance Abuse and Mental Health Services Administration (SAMHSA), U.S. Department of Health and Human Services.
- David Mechanic, University Professor and René Dubos Professor of Behavioral Sciences, Institute for Health, Health Care Policy and Aging Research, Rutgers University.
- Daniel O'Brien, Trainer/Program Coordinator, University of North Texas, Region VI Community Rehabilitation Program, Rehabilitation Continuing Education Program.
- Thomas O'Connor, Disability Management Consultant, O'Connor Associates.
- Patricia Owens, Health and Disability Programs Consultant, Board Member of the Disability Policy Panel of the National Academy of Social Insurance (NASI), and former Associate
Commissioner for Disability, SSA.
- Harold Pincus, Professor and Executive Vice Chairman of Psychiatry, Western Psychiatric Institute and Clinic, University of Pittsburgh Medical Center.3
- Sally Rogers, Director of Research and Research Associate Professor, Center for Psychiatric Rehabilitation, Boston University.
- John Rush, Associate Professor and Director, Department of Psychiatry, University of Texas Southwestern Medical Center at Dallas.
SSA officials gave the TAP tremendous flexibility to develop a range of options under the MHTS with the primary goal of maximizing people's ability to work to their capacity, which may or may not result in them leaving the rolls. They noted that the demonstration could potentially lead to further programmatic and legislative changes, especially in light of the major social and economic costs of chronic unemployment among current beneficiaries.
SSA required that the TAP develop the parameters of the MHTS design under the following assumptions:
- The MHTS should target individuals with a mental illness who are receiving (or applying to receive) SSDI. Those receiving both SSDI and SSI can be included, but individuals receiving SSI only are not to be included;
- MHTS participants should have a primary diagnosis of a serious mental illness;
- The MHTS should cover multiple states; and
- MHTS services need not be cost neutral to SSA. In other words, the costs of treatment and supportive services need not be constrained to be less than or equal to any savings to SSA in
reduced disability benefit payments.
The remainder of this report summarizes the options and design recommendations made by the TAP. The TAP convened three times over the course of this project, and additional input was provided via email and telephone communications and through written materials and resources.4 These activities led to recommendations for the MHTS target population (Section II), specific services to be delivered as part of the actual intervention (Section III), the structure and delivery of services (Section IV), and design suggestions for the next stage of the MHTS (Section V).
Notes from this section
1. These include stigma and discrimination (45 percent); inadequate treatment of their mental health condition (28 percent); lack of vocational services (23 percent); and lack of transportation to job/employment services (20 percent) (Hall et al. 2003).
2. For a more detailed description of these programs, see Sections I and III of U.S. House of Representatives (2004).
3. Dr. Pincus served as an expert consultant throughout the development activities and provided comments via regular telephone consultations.
4. Agendas for all three meetings of the TAP are provided in Appendix C to this report.
Note: This report is available in its entirety in the Portable Document Format (PDF).
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