David J. Martin, PhD. Harbor-UCLA Medical Center

The introduction of highly-active anti-retroviral therapy (HAART) to delay progression of HIV disease and of viral-load testing to better monitor disease progression created new optimism among people with HIV and their treatment providers alike. Following early reports of these treatment advances? effectiveness, the hope for prolonged and improved quality of life seemed more realistic than just a year prior to their introduction. Although subsequent research suggesting limits to these treatments? success has tempered initial optimism and hope, combined evidence continues to suggest that people with HIV are living longer, experiencing fewer HIV-related illnesses, and enjoying improved quality of life (e.g., Conant, Opp, Poretz, & Mills, 1997; Schneider, Borleffs, Stolk, Jaspers, & Hoepelman, 1999).

Concurrent with this new optimism and hope, an awareness has emerged that, although many people with HIV remain disabled, some who previously had left their jobs due to HIV-related disability are contemplating a return to work (Bettinger, 1997; Martin, 1997). In addition, as the demographics of HIV have changed, HIV has become increasingly associated with poverty indices and long-term unemployment such as substance abuse and homelessness. People with HIV from such backgrounds may not be "disabled" as defined by different disability-compensation agencies by either their disease or by their other problems. Because of their poor employment histories, they may need assistance in entering the workforce, including job preparation and job-hunting.

Historically people have cited a number of reasons for working, including financial?working generates income that contributes to survival and quality of life (Schlechter, 1997), psychological-working contributes to enhanced self esteem (Kasl, Gore, & Cobb, 1975; Linn, Sandifer, & Stein, 1985), social?working offers the opportunity to make and interact with friends, creating greater social support (Roberts, Pearson, Madeley, Hanford, & Magowan, 1997; Vinokur, Price, & Schul, 1995), and health-working contributes to improved health (Kasl et al., 1975). Brooks and Klosinski (1999) conducted a series of three focus groups among case-management clients at AIDS Project Los Angeles. When asked for reasons they might want to return to work, focus-group participants cited psychological and emotional benefits, financial benefits, social benefits (being around people) and physical activity.

However, despite apparently compelling reasons for workforce entry, a number of obstacles may make the transition from disability/unemployment to employment difficult. For people who have longer histories of disability/unemployment, these obstacles may suggest that efforts at workforce (re)entry are not worthwhile, or that the costs outweigh the benefits. Among their focus-group participants, Brooks and Klosinski (1999) found concerns related to potential loss of or change in health, possible loss of or change in health benefits, fear and anxiety over the possibility they might have to disclose their HIV status, prejudice and discrimination, and relative lack of job skills and/or education. In a follow-up survey of 1,992 AIDS/HIV case-management clients throughout Los Angeles County, California, Brooks, Ortiz, Veniegas, and Martin (1999) noted similar concerns among many of their respondents, although those contemplating workforce entry appeared less concerned about these issues than those who were not.

Concerns over workforce entry are not entirely unjustified. The HIV Mental Health Program at Harbor-UCLA Medical Center is in its third year of providing assistance to people with HIV seeking to (re)enter the workforce in a demonstration project funded by the Health Resources and Services Administration through its Special Projects of National Significance program (Martin, 1997; Martin, Arns, & Atkins, 1998). To date, a total of 141 individuals have been enrolled. Out of those 41 individuals who have completed 24 months of participation, 23 are employed, either part-time or full-time. Most have a diagnosis of AIDS, although most have also experienced an improvement in their health as a result of new treatments available. Despite health improvements, efforts at workforce entry have not been easy.

Table 1 depicts the results of a case-management-abstract review in which we tallied the number of significant obstacles to workforce entry among these project participants (Martin, Atkins, & Arns, 1999). Examples of these obstacles should demonstrate that they, in fact, represent significant impediments to workforce entry. Medical complications included hospitalizations for AIDS- and non-AIDS-related illnesses, severe diarrhea, pancreatitis, coronary heart disease, and lymphoma, among others. Mental health complications included five psychotic episodes, major depression, severe impulse control, and bipolar affective disorder. Psychosocial complications included death of partner/spouse, separation from partner/spouse, release of partner/spouse from prison, and others. It is also clear that a substantial number of participants experienced difficulties with substance abuse (including alcohol, methamphetamine, cocaine, and heroin) during their program participation. Our ability to help with these problems as they emerged was greatly enhanced by coordinating our vocational services with public and community-based medical, mental-health (including psychiatric), and case-management services. Although none of these obstacles differentiated between the two groups, it is clear that a large number out of both groups experienced substantial difficulty in their workforce-entry efforts.

Brooks and Klosinski (1999) and Brooks, et al. (1999) identified a number of services people with HIV/AIDS need to assist them in their workforce-entry efforts. These included employment services (referrals, job listing, interview-skills training), counseling (including benefits counseling), and workshops and seminars on vocational opportunity, as well as educational activities. Our experience at Harbor-UCLA suggests that vocational rehabilitation and workforce-entry activities should be integrated within a network of HIV/AIDS-related services.

Public Policy

The overview provided here suggests several public-policy implications which were outlined by Brooks et al. (1999). These include:

Earlier this year, the Work Incentives Improvement Act of 1999 (S. 331, 1999) was introduced in the United States Senate. If enacted, it would address a number of these concerns by expanding Medicaid health-care services to include workers with disabilities, eliminating work disincentives; providing increased consumer choice in and increased provider incentive for providing rehabilitative services; and creating programs for incentives planning, assistance, and outreach to disabled people. This legislation, if passed, would benefit many disabled people with HIV who wish to attempt a return to work. Laws exist to protect people with HIV/AIDS from discrimination. For example, because HIV disease is defined as a disability under the Americans with Disabilities Act, employers may not use an HIV diagnosis as a reason to fire an employee or not to hire a job applicant. However, many are unaware of these laws. Greater efforts at employer education and client advocacy are needed to address these gaps in knowledge.

It should be evident that contemplation of workforce (re)entry requires consideration of both substantial opportunity and significant obstacles and barriers. Individuals with HIV/AIDS must weigh their options and balance the efforts they anticipate against the benefits they believe they reasonably may expect. Such problem solving should be central in psychotherapy for people with HIV contemplating workforce entry.

Discussion of workforce-entry options is greatly facilitated if the psychotherapist has at least a rudimentary understanding of disability-benefit policy regarding workforce-entry efforts. For example, policy governing such efforts is very different for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Some disabled people with HIV/AIDS receive both SSI and SSDI, requiring an understanding of both systems. Individuals with private disability insurance need to understand the impact of their workforce-entry efforts on their individual policies (see Kohlenberg, 1997). Although such benefits counseling activities may appear outside the purview of traditional psychotherapy, they fall within the description offered by advocates of an expanded role for psychotherapy for people with HIV (e.g. Winiarski, 1997).

Our identification of significant mental-health, psychosocial, and substance-abuse complications occurring during workforce-entry efforts also suggests a critical role for psychologists and other mental-health professionals in facilitating workforce-entry efforts. Our data do not provide information concerning what enabled certain project participants to overcome the barriers they encountered and to become employed, while others appeared less able to do so. It is clear that a need for mental-health services coordinated with (re)employment services exists.

One final observation is in order. Nationally, the proportion of people who become disabled by an illness and who then return to work is very small (see Schlecter, 1997), whatever the illness, and those with longer periods of disability experience much greater difficulty entering the workforce than those whose disability is shorter lived. In addition to concerns expressed by many with disabilities, people with HIV/AIDS contemplating workforce entry frequently must confront a reversal in thinking perhaps best summed up by Peter Kurth after the International Conference on AIDS in Vancouver in 1996:

In the face of great uncertainty about their future, people with HIV/AIDS who undertake the task of workforce (re)entry are pioneers. Workforce entry is but one of many aspects of the reversal of thinking that accompanies their health improvement.

Bettinger, M. (1997). Regaining lost abilities: The prospect of returning to work. Focus: A guide to AIDS Research and Counseling, 12(8), 1-4.

Brooks, R. A., & Klosinski, L. E. (1999, in press). Assisting persons living with HIV/AIDS to return to work: Programmatic steps for AIDS service organizations. AIDS Education and Prevention.

Brooks, R. A., Ortiz, D. J., Veniegas, R. C., & Martin, D. J. (1999). Employment issues survey: Findings from a survey of employment issues affecting persons with HIV/AIDS living in Los Angeles County. Final Report. Report to the City of Los Angeles (Office of the AIDS Coordinator) and Los Angeles County Department of Health Services, Office of AIDS Programs and Policy.

Conant, M. A., Opp, K. M., Poretz, D., & Mills, R. G. (1997). Reduction of Kaposi?s sarcoma lesions following treatment of AIDS with retonovir. AIDS, 11, 1300-1301.

Kasl, S. V., Gore, S., & Cobb, S. (1975). The experience of losing a job: Reported changes in health, symptoms, and illness behaviour. Psychosomatic Medicine, 37, 106-122.

Kohlenberg, B. (1997). It?s back to work we go: HIV and re-entering the job market. Focus: A Guide to AIDS Research and Counseling, 12(8), 5-7.

Kurth, P. (1996, October 21). New drugs raise questions for one AIDS patient. Morning Edition (NPR), Transcript #1981, Segment 14.

Linn, M. W., Sandifer, R., & Stein, S. (1985). Effects of unemployment on mental and physical health. American Journal of Public Health, 75, 502-506.

Martin, D.J. (1997, Fall). Vocational rehabilitation: The next step. Innovations, 10-13.

Martin, D. J., Arns, P. G., & Atkins, A. C. (1998, August). Vocational rehabilitation for people with HIV: A demonstration project. In D. J. Martin (Chair), Employment issues affecting people with HIV. Symposium conducted at the annual convention of the American Psychological Association, San Francisco, CA.

Martin, D. J., Atkins, A. C., Arns, P.G. (1999). Working and not working with HIV. 11^th National HIV/AIDS Update Conference, San Francisco, CA.

Roberts, HJ., Pearson, J.C., Madeley, R. J., Hanford, S. & Magowan, R. (1997). Unemployment and health: The quality of social support among residents in the Trent region of England. Journal of Epidemiology and Community Health, 51, 41-45.

Schlecter, E. S. (1997). Work while receiving disability insurance benefits: Additional findings from the New Beneficiary Followup Suvvey. Social Security Bulletin, 60, 3-17.

Schneider, M. M., Borleffs, J. C., Stolk, R. P., Jaspers, C. A., & Hoepelman, A. I. (1999). Discontinuation of prophylaxis for pneumocystis carinii pneumonia in HIV-1 infected patients treated with highly active antiretroviral therapy. Lancet, 353, 201-203.

Vinokur, A. D., Price, R. H., & Schul, Y. (1995). Impact of the JOBS intervention on unemployed workers varying in risk for depression. American Journal of Community Psychology, 23, 39-74.

Winarski, M. G. (Ed.) (1997). HIV mental health for the 21^st Century. New York, NY: New York University Press.

Work Incentives Improvement Act of 1999, S. 331, 106^th Congress, 1^st Sess. (1999).