Employment. Avowed by all as the key to self-sufficiency and the backbone of a strong American society, it is seldom attained by citizens with severe mental illnesses. Despite the fact that people with these brain disorders want to work, they rarely succeed in obtaining a job--more than 85 percent of individuals with these disorders are unemployed.
This high unemployment rate belies a growing body of research that documents that treatment and specific rehabilitation interventions for people with severe mental illnesses can significantly improve employment outcomes. Work may be full or part time, with or without job accommodations and on the job supports. The ability of people with severe mental illnesses to work will change over time as these individuals recover from the most incapacitating and sometimes recurring effects of their illnesses.
Many barriers impede successful employment. Job opportunity is a key element to employment success; economic downturns and recession disproportionately impact individuals with disabilities in general and those with severe mental illnesses specifically. Also, fear, ignorance, and prejudicial attitudes lead to discrimination in the workplace and limit job opportunities and career advancement. Finally, even with the very best treatments and support services, some individuals will only be able to work part-time, and still others, not at all.
Public programs established to benefit people with disabilities are another barrier to work for people with severe mental illnesses. Medicaid, a key funder of community-based services for people with these brain disorders, has historically prohibited payment for vocational services. The Social Security Administration's income-replacement programs--Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI)--that provide needed resources as well as access to Medicaid and/or Medicare health benefits also create barriers to employment.
One public program has as its key mission the provision of vocational rehabilitation services to people with disabilities--the federal-state vocational rehabilitation system. This system is specifically intended to provide people with disabilities, including people with severe mental illnesses, with the services and supports they need to obtain and retain employment.
The federal-state vocational rehabilitation system was created in 1920 with passage of the Smith-Fess Act. In 1943 Congress broadened its scope to include services to people with mental disabilities, including mental illnesses. Since then, successive changes in federal law and regulations have tried to focus the system on people with the most severe disabilities. However, many feel that the system operates in ways that impede its effectiveness for such individuals.
This report details the results of a coordinated set of national surveys NAMI conducted of employment programs and practices for people with severe mental illnesses. It evaluates data collected from these programs, with particular emphasis on:
These data, as well as data from studies previously conducted, provide evidence that the federal-state vocational rehabilitation system has, for the most part, been an abject failure as a viable source of vocational rehabilitation services for people with severe mental illnesses. Moreover, as it is currently structured, the federal-state vocational rehabilitation system is unlikely to ever be an effective source of services for people with these brain disorders. There are a number of reasons why this is true.
First, state vocational rehabilitation services are time limited and predicated on the idea that once people obtain employment, they no longer require services and supports from the vocational rehabilitation system. This idea is entirely contrary to the realities of severe brain disorders such as schizophrenia and bipolar disorder (manic-depressive illness), which are episodic in nature and fluctuate over time in terms of severity and impact. Yet state vocational rehabilitation agencies are generally unwilling to provide the ongoing services and supports people with these disorders need to effectively function in the workplace.
Second, since its inception, state vocational rehabilitation agencies have perpetuated a system that rewards counselors for putting their greatest efforts and resources into those individuals who are easiest to place into employment and most likely to retain employment after placement. Despite lip-service about the importance of serving individuals with the "most severe disabilities," the majority of state vocational rehabilitation agencies have demonstrated little real interest in developing or implementing ideas such as "weighted closure" systems that would establish true incentives for serving individuals with more complicated, long-term needs.
Third, state vocational rehabilitation agencies still put a large proportion of their resources into disability and eligibility-determination activities and other administrative functions while inadequate resources go into direct services for people with disabilities, including severe mental illnesses. Moreover, resources used for determining the eligibility of applicants with severe mental illnesses are often spent on evaluation methodologies that are inappropriate for this population and have extremely low validity for predicting employability.
Fourth, many state vocational rehabilitation administrators and counselors lack knowledge about severe mental illnesses and the characteristics and needs of people who suffer from these brain disorders. Opportunities for counselors to receive training about severe mental illnesses and systems that serve individuals with these brain disorders are very limited. Moreover, a number of state vocational rehabilitation agencies stubbornly adhere to "counselor-generalist" models, resisting counselor specialization despite clear evidence that specialization is necessary to adequately serve individuals with complex needs such as those with severe mental illnesses.
Fifth, the codes used by the federal Rehabilitation Services Administration (RSA) and the state vocational rehabilitation agencies to describe mental illnesses are hopelessly outdated. These categories--"psychotic disorders" and "psychoneurotic disorders"--have not been used in the field of psychiatry for many years. The ongoing use of these terms by the federal-state vocational rehabilitation system speaks to the lack of interest and commitment on the part of this system to providing effective services to this population. Among other things, use of these inappropriate diagnostic codes makes it impossible to determine what percentage of people with "mental impairments" that state vocational rehabilitation agencies claim to serve actually do suffer from severe mental illnesses.
Sixth, state vocational rehabilitation agencies have, by and large, done a very poor job of working cooperatively with mental health agencies and other involved systems to best meet the needs of people with severe mental illnesses. There is little evidence of effective coordination between state vocational rehabilitation and mental health agencies.
Finally, artificial, time-limited funding and durational limitations established by state vocational rehabilitation agencies serve as disincentives for community-based providers to contract with these agencies. In many parts of the country this results in an overall shortage of qualified vocational rehabilitation "vendors" to provide services for people with severe mental illnesses.
How bad is the federal-state vocational rehabilitation system for people with severe mental illnesses?
Studies show that the federal-state vocational rehabilitation system has achieved dismal outcomes in serving people with severe mental illnesses. It achieves a lower rate of closure into meaningful jobs as compared to others with physical disabilities or mental retardation. More than for any other type of disability, people with severe mental illnesses are "closed-out" of state vocational rehabilitation systems as "failures." In many cases it is actually these state systems that have "failed" to provide the services individuals with these brain disorders require.
Our own analysis of state vocational rehabilitation plans revealed that no state was able to provide information in response to all three of the following questions, questions that surely represent the bare minimum of information needed for public accountability.
1) How many people with severe mental illnesses do you estimate will be served in the upcoming year?
2) How much money would be spent on services to this population?
3) What are the expected outcomes?
Furthermore, our analysis revealed that, while a few states demonstrate some forward thinking in their comprehensive planning efforts, in general few state plans showed evidence of strategic, measurable objectives for improving services for people with severe mental illnesses.
The public mental health system, overseen by state mental health agencies and departments, is only moderately better than the federal-state vocational rehabilitation system in providing vocational rehabilitation and employment services. Our survey of state mental health agencies and departments reveals that these agencies have only recently turned their attention to the issues of rehabilitation and employment. Few dollars have followed this new attention.
The overall lack of state mental health agency focus on vocational rehabilitation is particularly unfortunate when viewed in the context of research that suggests that the outcomes of psychosocial and vocational rehabilitation services are generally enhanced through collaboration between public mental health systems and local service providers. These efforts signal the ability, although only in its infancy of development, of public mental health systems to achieve better employment outcomes for people with severe mental illnesses than traditional federal-state vocational rehabilitation systems.
Moreover, unlike state vocational rehabilitation systems, public mental health systems appear more oriented to addressing the intermittent or long-term needs of people with severe mental illnesses. Unlike state vocational rehabilitation systems, financing of services by the mental health system does not terminate after 60 days of employment. Hence, these systems are better able to respond to the ongoing, long-term needs of their clients.
Before discussing specific recommendations for how employment outcomes can be efficiently and effectively improved for people with severe mental illnesses, it is necessary to emphasize our belief in the importance of maintaining a federal focus on employment services and people with severe mental illnesses. Even as the federal government examines the feasibility of shifting more programmatic and fiscal responsibility to the states for a variety of health and social programs, we believe that it is essential to retain some responsibility, including fiscal responsibility, at the federal level. This becomes imperative when viewed in the context of the costs that accrue to the federal government when people with severe mental illnesses are unable to work.
The need for federal oversight of the vocational rehabilitation system is illustrated by the resistance we encountered when trying to obtain copies of vocational rehabilitation plans in certain states. Although these plans are legally a matter of public record, NAMI was forced to file Freedom of Information Act requests or seek intercessions by the governors to obtain this information from the following states: Arkansas, Colorado, the District of Columbia, Florida, Idaho, Maryland, Michigan, Missouri, Mississippi, Nebraska, New Hampshire, New Jersey, New Mexico, Nevada, North Dakota, Oklahoma, Virginia, West Virginia, and Wyoming.
1. The estimated $490 million (about 79 percent of which are federal funds) currently spent on ineffective vocational rehabilitation services should be reprogrammed and spent on a broader array of long-term or intermittent vocational and psychosocial services and supports that do appear to work better for people with severe mental illnesses. This estimated $490 million of combined federal and state funds would provide stable annual vocational rehabilitation funding for 62,000 to 90,000 persons with severe mental illnesses.
Appropriate programs of assertive community treatment (PACT), psychiatric rehabilitation, and transitional or supported employment models exist (e.g., Fountain House in New York City and Thresholds in Chicago) which, if replicated and multiplied across the nation, could channel the $490 million into far more productive outcomes for individuals with severe mental illnesses.
However, the bureaucratic constraints and narrow thinking characteristic of state vocational rehabilitation systems make it impossible, under the current system, to use these programmatic models to their maximum effectiveness in providing services to this population. Hence, the $490 million should be pulled from the federal-state vocational rehabilitation system and rechanneled into more effective, efficient, and streamlined service delivery. The following alternatives for doing so should be considered. They are listed in order of legislative and regulatory simplicity. These options are discussed in greater detail in the concluding chapter of this report.
a. Use the $490 million of combined federal and state vocational rehabilitation funds to establish a program of categorical funding under the Rehabilitation Act similar to the Independent Living Center (ILC) or Projects with Industry (PWI) programs, to meet the continuous, long-term needs of individuals with severe mental illnesses in psychiatric rehabilitation, supported employment, transitional employment and PACT programs.
b. Integrate the $387 million of federal vocational rehabilitation funds into the existing Mental Health Services Block Grant authority for funding of vocational and psychiatric rehabilitation services on a continuous, non-time-limited basis. However, this should only occur if careful protections are put into place to ensure that these monies are used for people who are truly severely mentally ill.
c. Develop private mechanisms to allocate at least the $387 million federal share of the $490 million of vocational rehabilitation funds for the delivery of continuous, non-time limited services for individuals with severe mental illnesses, without passing it through costly and inefficient state government bureaucracies. Encourage private service providers to raise the funds necessary to satisfy the previous state match for vocational rehabilitation services for people with severe mental illnesses.
d. Give responsibility to the Social Security Administration (SSA) for administering the $387 million federal share of vocational rehabilitation services for people with severe mental illnesses. This should be coupled with changes in laws governing SSI and SSDI to enable people with severe mental illnesses (and other disabilities) to return to work without fear of losing access to benefits should they relapse.
e. Integrate the $490 million into the federal-state Medicaid program and allow funding of vocational and psychiatric rehabilitation services on a continuous, non-time-limited basis with protections against erosion through conversion of these funds to other uses for other non- mentally ill Medicaid populations.
2. Psychiatric rehabilitation programs and other potential recipients of rechanneled vocational rehabilitation monies must meet minimal service standards as a condition for receipt of these monies under grant, contract, or voucher provisions.
Standards developed by several recognized accreditation organizations should be considered for adoption into this process. These organizations include the Commission on Accreditation of Rehabilitation Facilities (CARF), the Joint Commission on Accreditation of Health Organizations (JCAHO), the Council on Accreditation, or others. Since the vast majority of psychiatric rehabilitation programs are currently not accredited by any of these bodies, they should be required to achieve accreditation, by an accrediting body acceptable to the field, within five years as a condition for continued funding.
3. Mechanisms should be developed and implemented for monitoring the performance and accountability of programs that provide vocational rehabilitation services to individuals with severe mental illnesses.
The separation of funds targeted for people with severe mental illnesses from the federal-state vocational rehabilitation system increases the importance of developing effective mechanisms for evaluating programs; disseminating information to consumers, family members and advocates; and ensuring that local recipients of vocational rehabilitation funds are held maximally accountable to the people they serve.
4. The SSI and SSDI programs should adopt changes that encourage people with severe disabilities to reenter the work force without fear of losing access to benefits should they relapse.
Many people with severe mental illnesses rely on SSI and SSDI benefits (and their respective links to Medicaid and Medicare) for income supports and access to medical care. Although the SSI program contains fewer barriers to work than the SSDI program, both of these programs discourage people with these severe disabilities from reentering the work force for fear that they will lose these critically important benefits. Progressive changes such as maintaining continuous eligibility for SSI/SSDI (even when recipients are working and thereby ineligible for cash benefits) and integrating the SSI Section 1619 work incentive provisions into the SSDI program should be adopted to eliminate these work disincentives.
5. Federal and state laws must be adopted prohibiting discrimination against people with severe mental illnesses in private health insurance policies.
The pervasive discrimination against brain disorders such as schizophrenia and manic-depressive illness (bipolar disorder) which exist in most private health insurance constitute another major disincentive for people with severe mental illnesses to reenter the workforce and risk loss of Medicaid benefits. Prohibitions against discrimination of this nature must be adopted, in conjunction with progressive work incentive provisions in the SSI and SSDI programs, to eliminate these barriers.
6. The current law must be amended to require Client Assistance Programs (CAPs) in the individual states to be independent of state vocational rehabilitation programs.
Presently, a number of CAP programs in the states are administered by state vocational rehabilitation agencies. This significantly compromises the ability of these programs to truly engage in independent advocacy on behalf of individuals with severe disabilities, including severe mental illnesses.
7. The federal Protection and Advocacy Program for Individual Rights (PAIR) program should be utilized to advocate for vocational rehabilitation and related services for people with severe mental illnesses.
The PAIR program was established to provide protection and advocacy services to individuals who are either ineligible for assistance or whose needs can’t be addressed by other protection and advocacy programs. As the jurisdiction of the Protection and Advocacy for Individuals with Mental Illnesses (PAIMI) program is limited to individuals in "facilities," the PAIR program should be utilized to assist individuals with severe mental illnesses to access appropriate vocational rehabilitation services, SSI/SSDI and Medicaid/Medicare benefits.
8. The scope and specificity of reports issued by the U.S. General Accounting Office (GAO) or other oversight agencies must be increased to provide information about short- and long-term employment outcomes achieved by individuals who receive federally funded vocational and psychiatric rehabilitation services.
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