REHAB Bringing Research into BRIEF Effective Focus Vol. XV, No. 10 (1993) ISSN: 0732-2623 NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES DEPARTMENT OF EDUCATION WASHINGTON, D.C. 20202 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * STRATEGIES TO SECURE AND MAINTAIN EMPLOYMENT FOR PEOPLE WITH LONG-TERM MENTAL ILLNESS More than 40 million people in this country have psychiatric impairments; and of that number, 4 to 5 million adults are considered seriously mentally ill. Despite their strong desire to work, functional competencies, and educational qualifications, many of those who have severe and persistent emotional problems have no long-term attachment to the labor market; estimates of unemployment are at a rate of 85 percent for the working-age members of this population. In September 1992, The National Institute on Disability and Rehabilitation Research (NIDRR) convened a Consensus Validation Conference (see sidebar) concerning employment for people with long-term mental illness. It was the consensus of that conference that much more can and should be done to improve and expand employment opportunities for people with psychiatric disabilities. This Rehab BRIEF summarizes findings of this conference. For information on where to obtain a copy of the full Consensus Statement, see page 4. STIGMA Stigmatization is a major factor that affects the success of vocational efforts. At the heart of the problem is the old belief that the severe impacts of mental illness limit the employment prospects of people with psychiatric disabilities. Only two decades ago, employment was not considered an option for people diagnosed with long-term mental illness; they were frequently informed by treatment professionals that they would never work again. People generally believed that psychiatric symptomology was incompatible with employment. Although there is a growing professional consensus that this is not so, the belief is pervasive and affects not only potential employers but also clients themselves. In fact, mental health and vocational rehabilitation workers often unwittingly reinforce stigma in their interactions with clients--by holding faulty ideas about the nature of the disability, by perpetuating negative stereotypes, by expecting clients to conform to dictated treatment and dependency roles, and by the inappropriate use of unskilled jobs, often limiting vocational placements to what one researcher calls the Four F's: food, flowers folding! and filth (referring to the stereotypical entry-level positions often offered clients with long-term mental illness: food service, gardening, laundry or clerical work, and janitorial services.) The handicapping effects of stigma may often be more powerful than the disability itself. Disclosure is an important corollary concern. Many people who have psychiatric disabilities are reluctant to disclose this information, for fear of discrimination and stigma. The decision of when, to whom, and how much to disclose has become increasingly important with the passage of the Americans With Disabilities Act (ADA): For workers to receive the protection of the ADA, they must self-disclose. In addition, disclosure can help reduce stigma and misconceptions about mental illness. Many workers, however, choose not to disclose, because any benefits must be weighed against the personal risks of stigma and the resulting indignity and discrimination. Consensus is that above all the issue of stigma must be addressed. Education and the dissemination of accurate information about psychiatric disabilities are the keys to challenging stigma. Two goals should be of special concern: to establish a systematic approach to increasing consumer empowerment and to improve the attitudes of employers (both public and private) with regard to hiring people with mental illness. ISSUES THAT NEGATIVELY AFFECT EMPLOYMENT While this is a heterogeneous population, research suggests that beyond stigma some other common issues negatively affect success in securing and maintaining employment. - Multiple impairments often characterize psychiatric disability and complicate interventions. These include cognitive, perceptual, affective, and interpersonal difficulties. Such limitations can directly impact social and vocational functioning, resulting in poor work habits, distorted vocational aspirations, poor job-finding and job retention skills, and overall poor work histories. - People with psychiatric disabilities may lack many normal life experiences that are the foundations of vocational identity. This may result in limitations of self-knowledge, skills, interests, and work values. - Psychiatric disability often occurs in association with other potentially disabling disorders such as physical illness or substance abuse. Such impairments can render the appearance of workers with psychiatric disabilities sufficiently different from others that they may seem vocationally inappropriate, regardless of their ability to work. - Symptoms of social withdrawal, lack of affect, and lack of overt ambition are often confused with lack of motivation or cooperation. Thus, individuals may be laid off by employers or abandoned by the vocational rehabilitation system rather than effectively served. - The episodic nature of psychiatric disability, with its many remissions and relapses, may concern employers who are concerned about worker reliability and productivity and dishearten rehabilitation service providers. The pessimism often brought on as a result can add to the negative effects of stigma. - Obstacles within the service delivery system can act as barriers to employment. These include the confusing and often contradictory set of definitions and classifications for this population existing among human-service delivery systems; the lack of integration among health, vocational rehabilitation, and welfare agencies; and the powerful - disincentives to work created by Social Security Administration regulations governing financial support and medical insurance. ISSUES THAT POSITIVELY AFFECT EMPLOYMENT SUCCESS On the other hand, many issues positively affect employment success for this population. - Certain client demographic variables have been found to correlate positively with vocational functioning. Of these, employment history has been identified as most predictive of vocational outcome. Other variables found to correlate with vocational success include fewer prior hospitalizations, shortened periods of the length of last hospitalization, a current marriage, prior occupational level, and work adjustment skills. Research also shows that certain variables are not predictive of vocational success, despite widespread assumptions: Neither particular patterns of symptomology, diagnosis, nor functioning in other life domains correlates strongly with positive employment outcomes. - Four elements of the vocational rehabilitation process have been identified as important in effectively helping people with long-term mental illness obtain employment: the practitioner, the process, the programs, and the principles. 1. There is evidence that some practitioners are neither sufficiently informed nor sensitive to the needs of people with psychiatric disabilities; many consumers feel they are viewed by practitioners as incapable and incompetent. There is evidence that the most effective practitioners demonstrate respect for clients and their individual experiences of illness; they not only establish partnerships that allow clients to lead but also provide information and direction, and they are knowledgeable about psychiatric disabilities and the larger service system. 2. The vocational rehabilitation process must be comprehensive, dynamic, and adaptable, not limited to standard programming. In effective agencies, vocational counseling, assessment, job development, placement, training, and follow-along services are flexible enough to respond to the characteristically varied and changing needs of this population. 3. A variety of program approaches exist today; many emphasize "real work for real pay" in community settings. Research strongly indicates the effectiveness of such approaches in reducing hospitalization and increasing job acquisition, job retention, and earnings. Some of the most prevalent approaches include: - Transitional employment (TE). This approach usually involves part-time, short-term entry-level positions in community settings. - Individual placement. This is a supported employment model that utilizes the place/train approach, carefully matches clients with jobs, and places clients in jobs in the community as quickly as possible, with on-the-job training and off-the-job supports. - Enclaves. These are typically established in a large, commercial business and assume responsibility for an entire area of work, with supervision provided by the rehabilitation agency. - Work crews. Mobile crews, under program staff supervision, offer services (often janitorial or landscaping) to commercial businesses and public agencies in the community. - Small businesses. Many nonprofit facilities have established small businesses (e.g., bulk mailing houses, cookie factories, duplication franchises) that may provide either transitional or permanent employment opportunities at all levels of the organization. - Fairweather Lodges. These are residential/vocational settings, where groups of clients live together and jointly operate small business ventures. - Assertive Community Treatment (ACT). ACT programs offer comprehensive community adjustment services through a coordinated team approach; an employment specialist is usually a member of that team. - Consumer-run programs. A small number of programs have developed in recent years that offer vocational counseling, educational and training programs, placement services, and ongoing peer support, with minimal or no support from mental health professionals. - Psychiatric vocational rehabilitation. Highly individualized and consumer-driven programs have derived from the psychiatric rehabilitation approach. Vocational goals are mutually defined through experimental and reflective activities; help is provided through coaching and support activities. Many of these approaches overlap, and there are wide variations in practice. Other approaches include volunteer work in which clients can gain experience in structured, community-based work settings, and Job Clubs in which client groups meet regularly to help one another develop and carry out job-seeking strategies. 4. A number of shared principles make some vocational rehabilitation programs most effective: - Consumer choice. Successful programs act on consumer empowerment and provide consumers control over the timing, pace, and intensity of their own rehabilitation process, as well as a wide range of choices of program models, work settings, and actual job choices. - Integrated settings. Real work opportunities are in as integrated an environment as possible, in which consumers have opportunity to interact with nondisabled co-workers~ supervisors, and the general public. - Service linkages. Effective rehabilitation provides not only vocational programs but also a range of nonvocational supportive services such as housing, financial management, transportation, and social supports. - Natural supports. Many programs seek to draw on the natural supports in the client's life such as family members, co-workers, mentors, company employee assistance programs, and so on, to help working consumers to remain employed. - Rapid placement. Effective programs move consumers on to real jobs in the community quickly, providing on- and off-the-job supports for as long as necessary, not ending at program-determined cutoff dates. - Job accommodations. Effective support stresses the need for appropriate, individualized job accommodations. These can be provided either by the employer or the rehabilitation agency and frequently inexpensive but crucial. - "Seamless" services. Continuity of services has been found to be best for consumers. This requires ongoing programs that do not force shifts of counselors, agency affiliations, or relationships as consumers move within the process. - Employer education. From an employer's point of view, work is not therapy but the successful outcome of a recruitment and hiring process and the means to productivity and profit. Employers expect to gain returns on their investments. By viewing work as primarily a therapeutic activity, the rehabilitation community has often limited its own success. The most effective programs forge good long-term employer/rehabilitation partnerships, often by establishing community business advisory councils; they confront stigma, acknowledge employer resistance, and convince employers that hiring people with psychiatric disabilities will result in desired productivity. Such programs demonstrate to employers that rehabilitation strategies that promote worker success benefit not only clients but also employers. (Many employers become inclined to use rehabilitation programs as sources of new recruits, because no other recruiting resource provides such long-term assistance to business. Good rehabilitation programs take advantage of this "marketing edge.") [BEGINNING OF SIDEBAR ON CONSENSUS VALIDATION CONFERENCES] The National Institute on Disability and Rehabilitation Research (NIDRR) convenes Consensus Validation Conferences in order to evaluate and synthesize available scientific data and improve the dissemination of findings from rehabilitation research. The consensus validation process attempts to close the gap between research and practice by clarifying the state of the art and best practices in particular areas of rehabilitation. Problems affecting work and community living are emphasized; their resolution is facilitated by distinguishing what is known from what is not yet known. Each NIDRR Consensus Statement is prepared by a nonfederal 10-member panel, based on (1) resource papers prepared by experts: (2) testimony presented by researchers, clinicians, and consumers during a public hearing; (3) closed panel deliberations, during which the Consensus Statement is prepared. Each Consensus Statement is an independent report of that panel and does not represent policy of NIDRR or the federal government. Each Consensus Validation Conference operates as a "Court of Science." A group of conference questions constitutes the charge to a "jury" of experts; the Consensus Panel makes up this jury. The testimony provided by professionals and consumers constitutes the "evidence."The panel weighs the evidence and reaches a consensual "verdict," which is published and widely disseminated. However, unlike a typical court model, the audience is encouraged to ask questions, make comments, and provide further evidence. It is anticipated that practices discussed in Consensus Validation Statements will be adopted by practitioners and consumers, as they represent recent research and best practices. [END OF SIDEBAR ON CONSENSUS VALIDATION CONFERENCES] PRINCIPLES OF EMPOWERMENT Empowerment is vital to recovery and to success in seeking and maintaining employment. Empowerment implies the ability to control one's life, and the conditions that affect one's life, with at least as much power as most people have. For mental health service recipients, empowerment implies (a) freedom of choice regarding services; (b) a significant role in the operation and decision making of programs that provide services; (c) participation in planning, evaluation, and decision making; and (d) participation in civic decisions at community, city, county, state, and federal levels. One important aspect of empowerment is the realization that people with psychiatric disabilities can play a variety of self-empowering roles in the rehabilitation system. Not only are people with longterm mental illness making important decisions for their own rehabilitation as recipients of services but, increasingly, consumers are also taking active roles as advocates, members of policy and planning boards, researchers, service providers, and agency managers.. More mental health consumers have expressed strong interest in such roles, but they have experienced many barriers to empowerment. Stigma is the primary barrier. There still too often exists the inappropriate perspective that providers alone know what is best for consumers. However, the experience of successful agencies shows that when consumers have meaningful roles in development and provision of services, the perspective they bring enhances service relevance. CONCLUSION The rehabilitation process for people with long-term mental illness is neither a short-term nor a linear process. The disability--and particularly its episodic and disruptive quality--suggests that expecting the rehabilitation process to proceed in a "straight-line" fashion is self-defeating for consumers and professionals alike. More constructive is a long-term rehabilitation process directed toward gradually shortening periods of unemployment and gradually lengthening periods of productive work. Long-term interventions can be set in place to equip people with psychiatric disabilities to compete in the marketplace. A dramatic shift in attitude about people with longterm mental illness has taken place in the past 20 years. Contributing factors include public and professional awareness that prolonged stays in state and psychiatric hospitals can be disabling, advances in pharmacology, and a shift in focus from pathology to strengths and abilities. More important, a variety of service models have been developed and widely implemented over the past decade that are successful in helping people with mental illness to secure and maintain employment. At the same time, there is a growing research agenda. Each of the issues raised in this Rehab BRIEF--the effects of stigma, barriers to employment effective processes and programs that lead to employment, the need for long-term support to sustain developing careers, strategies that engage and support employers, and the positive impact of consumer empowerment in the vocational rehabilitation arena-requires much additional study if the field is to move more quickly and effectively to meet the employment needs of those with mental illness who want to work. FOR MORE INFORMATION A copy of the full Consensus Statement on Strategies to Secure and Maintain Employment for People With Long Term Mental Illness is available from: Mr. James E. Doherty Room 3423 Department of Education The National Institute on Disability and Rehabilitation Research 400 Maryland Avenue, SW Washington, DC 20202-2646 (202) 205-9151 We welcome your comments on this BRIEF and on BRIEFs put out during the past year, as well as your suggestions for topics and for improving this publication of Conwal Incorporated. Prepared by Conwal Incorporated, 510 N. Washington St., Suite 200, Falls Church, VA 22046 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- This document was scanned into electronic form for ABLE INFORM BBS: 301/589-3563 or FTS 301/427-0280 (data); Silver Spring, MD USA Internet telnet: fedworld.gov, then dd115 from the Top Menu Internet mail: naric@cap.gwu.edu Electronic release date: May, 1994 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-