"Project Employ: rehabilitation services facilitating employment of individuals with HIV/AIDS."

In 1993, the Centers for Disease Control and Prevention (CDC) reported 103,500 new cases of Acquired Immune Deficiency Syndrome (AIDS) among people in the United States over the age of 13, an increase of 111 percent over the cases reported in 1992.(1) While this increase resulted from the expansion of the AIDS surveillance case definition in 1993, it is significantly higher than the CDC's anticipated estimate of a 75 percent increase. HIV/AIDS is now ranked as the sixth leading cause of death among people aged 15-24, and 76 percent of all AIDS cases occur among adults aged 25-44: people in their most productive and employable years.(2)

HIV, the virus that causes AIDS, attacks the body's white blood cells (CD4's) which play a key role in the immune system. As time passes, the body loses Cd4's and is unable to defend itself. While the average person has a CD4 count of 1,000, for people with HIV this count decreases by an average of 85-100 cells per year. Generally, AIDS-related diseases do not develop until CD4 counts fall below 300. A person can be infected with HIV and not show any symptoms of infection on the average for 5-8 years.

As the CD4 count begins to drop, an infected person may develop thrush, oral hairy leukoplakia, herpes zoster (shingles), or idiopathic thrombocytopenic purpura. Weight loss, chronic weakness, diarrhea, fever, and fatigue are common. In women, chronic yeast infections are also an indication of declining CD4 counts. Common opportunistic infections which occur when a person has progressed to the final AIDS stage include pneumocystis carinii pneumonia, Kaposi's sarcoma, tuberculosis, mycobacterium avium-intracellular infections, toxoplasmic encephalitis, cryptococcoses, cytomegalovirus infections, herpes simplex, and crytosporidiosis. In addition to the physical attributes, HIV creates a number of psychological problems, including anger, depression, mental fatigue, fear, and guilt.[3]

With today's medical treatments, people with HIV are living and working longer. For the people who have HIV, half are projected to take more than 10 years to develop AIDS.[4] With medical treatment, they can manage the infection as a chronic, long-term condition similar to many other medical conditions. Vocational rehabilitation (VR), instituted in a timely manner, can play a significant role in enabling the person with HIV/AIDS to continue as a vital member of the work force.

The primary differences between HIV/AIDS and other chronic illnesses are the tremendous social stigma attached to HIV and the perception that all infected persons are going to die. In addition, many healthcare providers carry negative attitudes about some of the subgroups of the population which are most affected by HIV. All too often, people with HIV/AIDS are neither referred for rehabilitation nor do they receive services because of these factors. Yet, studies indicate that both medical and vocational rehabilitation have an important role to play in helping the person with HIV/AIDS maintain a healthy and productive lifestyle.[5]

Functional deficits, such as general deconditioning and decreased endurance, cognitive deficits (confusion, poor memory), pain, fatigue, and hemiparesis (muscular weakness affecting one side), can be reduced through medical rehabilitation. Physical therapy can assist with conditioning, strengthening, and pain management, while occupational therapy is important for teaching activities of daily living, as well as providing education in energy conservation and work simplification techniques. Speech therapy is important for persons with aphasia and other conditions affecting speech and breathing. As diarrhea and weight loss are significant problems for many people with HIV/AIDS, nutritional counseling is crucial. Finally, psychological counseling, therapy, and stress management can all be useful tools in helping to deal with the emotional difficulties which arise in persons with HIV/AIDS.

It is not uncommon for persons, when first learning of their HIV status, to contemplate inappropriate changes in job status because they are unaware of their rights. For example, many infected individuals are unaware that they are covered under the Americans with Disabilities Act (ADA) and the Rehabilitation Act, nor do they know about their rights under Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).

Just as with other chronic diseases, employees with HIV/AIDS can work quite well when appropriate job accommodations are made. Yet, many HIV+ individuals who are employed often leave their current jobs without negotiating accommodations with their employers. Others may be reluctant to consider taking a job, regardless of how well they feel, because of the potential impact on their disability benefits. The VR counselor can be an important advocate for both employee and employer by providing much needed education to employees regarding disability rights and assisting employers in instituting necessary job adjustments.

Frequently, the infected employee is hesitant to reveal his/her HIV + status and needs assistance in discussing this issue with his/her employer. Without adequate support, the infected employee may quit, get fired, or reveal his/her status in a less than appropriate manner. The VR counselor can help the employee make this important disclosure. The level of discrimination attached to HIV/AIDS, however, requires the VR counselor to be highly attuned to the confidentiality of the infected employee.

Finally, a number of HIV + persons come from economically and socially disadvantaged backgrounds. A history of substance abuse is common. The diagnosis of HIV can be a real motivator to some infected persons to "become clean" and "do something" with their lives. While many people with HIV/AIDS are highly motivated to work, they will need such basic skills as how to read the classifieds and how to handle a job interview. As one VR counselor specializing in HIV/AIDS described it, these individuals require the counselor to be proactive and to manage more than counsel.

The American Rehabilitation Association, formerly the National Association of Rehabilitation Facilities, is currently involved in a 3-year project to design a model for the early delivery of vocational rehabilitation services to people with HIV/AIDS before AIDS-related functional limitations occur. As Project Employ reaches its mid-point, the research staff has completed a series of surveys and focus groups. In addition, the project established demonstration sites in Baltimore, Maryland (IMPACT at the Sinai Rehabilitation Center), and Grand Rapids, Michigan (Project HOPE), to provide VR services to people with HIV/AIDS. Findings from the first 18 months of this project have helped to identify employment barriers and some possible solutions.

Project Participants

Procedure: At the end of the first year, 56 participants were enrolled for services at the Baltimore site and 9 were enrolled in Grand Rapids. Prior to receiving VR services, case managers interviewed each person to collect extensive information concerning health, vocational, educational, and social histories. Due to fatigue or memory loss, many participants were not able to answer all questions completely. The available data were compiled and analyzed in order to establish an overall profile.

Results: The average Project Employ participant was a male (79 percent), in his mid-thirties, showing some symptoms of disease. With a mean CD4 count of 379, it was understandable that fatigue was the most frequently reported symptom. Modes of transmission were primarily intravenous drug use (IDU) and male to male sexual activity.

Over two-thirds (70 percent) of participants had a high school diploma or less. Nearly all of the project participants were mobile (96 percent) and half lived alone. Relying primarily on SSI, SSDI, or other forms of disability payments, 78 percent of the individuals had an income of $7,000 or less. When asked about loss of employment, 11 of 26 individuals reported losing their most current jobs as a result of HIV, either from discrimination against the disease and/or sexual orientation or a decreased ability to perform job functions.

Twenty-seven percent of referrals were determined ineligible for services or dropped out of the program. It was not uncommon for the average participant to miss one in three appointments with case managers or counselors. From the 65 participants at both sites, 21 received Individual Written Rehabilitation Programs (IWRP's), 4 saw a physiatrist, 12 had completed vocational evaluations, 8 began employment training, 2 were sent to a drug dependency program, 1 started college, 1 began counseling, and 1 began cosmetology school. Sixteen people were referred for electronics, printing, or micrographics training.

Many of the participants in the first year contacted Project Employ regarding issues around disclosure, disability benefits, and rights under ADA. The motivation to work was high, even if it was for a part-time job or a volunteer position. In Grand Rapids, a hospice patient who wanted to do something productive with the time he had left was given a 24 hour a week job working as a receptionist for the area AIDS service organization (ASO). The job increased his feelings of self-worth and enabled him to leave the hospice. Even though this man was able to work for only 3 months before his death, the quality of his life was greatly improved.

Project Employ conducted surveys relating to the use of rehabilitation services for people with HIV/AIDS, for state VR agencies, ASO's, and members of the American Rehabilitation Association. Outlined below are the results of the three surveys, as well as the findings from the focus groups for persons with HIV/AIDS.

State VR Survey

Method: A survey form was sent to a 50 state VR agencies and to 33 state agencies for the blind and visually impaired in an attempt to understand how VR services are being provided to persons infected with HIV. The questionnaire addressed issues surrounding eligibility and range of services, as well as barriers to service. Eighty percent of the agencies surveyed responded.

Results: The majority of the agencies (75 percent) do not consider HIV or AIDS a primary functional limitation. This means that the VR applicant must have some other limiting factors, such as cognitive deficits or physical deconditioning, in order to be eligible for services. In addition, agencies reported staff fears, anxiety, and social stigma as primary barriers to service. Respondents did not appear to be aware of serving many HIV + persons, as 28 percent reported seeing between 0-2 persons for the preceding 6-month period. (Given the HIV + individual's right to confidentiality, the numbers of those receiving services is likely to be under reported.)

American Rehabilitation Association Member Survey

Method: An informational survey was sent to 318 comprehensive rehabilitation facilities (CRF) and to 84 VR providers, all of whom were American Rehabilitation Association members (response rates were between 88-100 percent). A detailed followup questionnaire was then sent to the 63 members who indicated that they treated persons with HIV/AIDS.

Results: For the 34 respondents to the followup survey, physical therapy (83 percent) was the leading service provided, followed by benefits counseling (37 percent), worksite modification (27 percent), and work hardening (10 percent). Respondents identified lack of funding (52 percent) being the greatest single problem related to service provisions for persons with HIV/AIDS. Other problems included stigma and staff fears, lack of community referral base, and lack of motivation for some to follow through with rehabilitation.

ASO Survey

Method: A survey questionnaire was randomly sent to 481 ASO's across the country in order to determine what types of services they currently are providing (including job related services);

how familiar they are with the rehabilitation services available for people with HIV/AIDS; and, according to their experiences, what are the major barriers to employment for individuals with HIV/AIDS. Results are based upon 225 returned questionnaires (a 54 percent response rate).

Results: ASO's describe the population they serve generally as adult, homosexual/bisexual males or IDU's. Women and other minority groups were specifically targeted in several organizations; thus, all groups except youth and children were represented. Types of services offered by most organizations included (in descending order) resource information, outreach, advocacy, support groups, nutrition information, social services, psychological counseling, disability benefits counseling, newsletters, transportation, HIV testing, and financial assistance. Only 34 (16 percent) of the ASO's provide any type of job related services, primarily job counseling.

Rehabilitation services that ASO's were most familiar with include residential services, physical therapy, vocational rehabilitation, and occupational rehabilitation. The types of programs/services that ASO's suggested to help individuals with HIV/AIDS find or maintain employment included flexible schedules, job sharing, work at home, job accommodations and enforcement of ADA in the workplace, temporary or part-time employment, job bank, job training or retraining, and employer/employee education.

Focus Groups for Persons with HIV/AIDS

Thirty-five people with HIV/AIDS (20 males and 15 females) have participated in nine focus groups (three in Grand Rapids, one in Baltimore, three in New Hampshire, one in Vermont, and one in Newark, New Jersey). Participants included persons who were infected by all modes of transmission; white, African American, and Latinos; employed, unemployed, and disabled; and residing in cities, suburbs, and rural areas. At least 24 (68 percent) have already been diagnosed with an AIDS-related illness.

Findings include the following:

* Persons who are currently on disability are hesitant to seek employment as they are concerned that it will jeopardize their benefits.

* The prime motivators for being employed are to reduce depression and to retain health insurance. Financial concerns ranked third.

* Working individuals who are worried about disclosing their HIV status at the workplace experience extreme stress. It is not uncommon for this to lead to the infected individual leaving work on disability.

* Many participants who were working believed that the Americans with Disabilities Act would have little benefit for them in their current work situation.

* Fatigue is a major issue for many HIV + persons. Many people would like to work part time, short term, and/or in a job with little stress. Two focus groups recommended that job banks be established for persons with HIV/AIDS.

* Many participants expressed an interest in jobs which they thought were fulfilling or had personal meaning to them. Many were interested in helping others who were in a similar situation.

* A certain segment of the HIV/AIDS population views whatever time they have left as "retirement' and has no interest in working.

* Persons who disclose their HIV status are experiencing discrimination in the workplace and in hiring practices.

In coordinating the focus groups, a number of ASO's were contacted. Case managers expressed a serious need for information to help them in working with HIV+ persons. The ASO's wanted to know more about ADA and how to advise HIV+ persons on the basics of disclosing--how to get free legal advice and whether they should accompany the individual when he or she discloses. They had little knowledge of their state's VR programs and what help these programs could provide.

Focus groups are currently underway with employers and employees. Preliminary findings from talking to employers indicate that companies, even if they have policies on employees with HIV/AIDS, do not necessarily create an environment where the infected employee feels comfortable in disclosing his/her HIV status. Consequently, employers seldom know that an employee is infected until it is often too late to provide adaptive measures.

Discussion

The majority of Project Employ first-year participants have had disease symptomatology for some time. Consequently, the disease progression, in some of them, would be so advanced that the role of VR would be very limited. In addition, many of the first-year participants have had serious issues with substance use. For these individuals, employment difficulties had little to do with HIV/AIDS and more to do with substance use.

In a few cases, referring agencies sent persons to Project Employ shortly after the HIV diagnosis was made in conjunction with an AIDS defining illness. In these instances, the person was concerned about returning to work, not because of an inability to perform the job, but rather because of the reaction of the employer and coworkers. These individuals needed assistance in coping with their new diagnosis, their rights under ADA, and empowerment training. Current employers needed assistance in understanding the needs and rights of their employees and how they could best accommodate them.

The following barriers to rehabilitation services and ultimately to employment were identified as a result of the surveys, VR services in Baltimore and Grand Rapids, and the focus groups.

* HIV/AIDS is not considered a primary functional limitation by most VR agencies, which delays service provision beyond the optimal time for intervention.

* AIDS-related functional disabilities often occur at the later stages of disease, when life expectancy is short.

* Even if a state considers HIV/ AIDS as a primary functional limitation, if an order of selection is in place, the person with HIV/AIDS may not be eligible for services unless he/she has another serious disability.

* Many VR counselors have a fear of the disease and are concerned about the social stigma associated with it. Consequently, they may be reluctant to offer much needed services.

* While many people with HIV/ AIDS are on disability but are able to work, SSI and SSDI do not provide a sufficient incentive for doing so--lawyers and peers encourage persons on disability not to work as this could jeopardize benefits.

* Some persons with HIV/AIDS have little interest in working, as they view their remaining time left as "retirement years," while others have a spotty work record due to a history of substance abuse.

* Many people with HIV/AIDS are discriminated against in the workplace and in hiring practices. Aware of these activities, many infected employees are reluctant to share their status with their employer.

Conclusion

While many people with HIV/AIDS are working quite successfully, many others could and should be working. However, factors such as ignorance and stigma of the disease, lack of job accommodations, limited access to VR services early in the disease process, and the difficulties surrounding SSI and SSDI keep many people with HIV/AIDS at home and out of the work force.

Not many rehabilitation providers consider treatment of persons with HIV/AIDS a priority. This could be due to a combination of reasons: AIDS is viewed by many providers to be a terminal illness, consequently they don't see a need to rehabilitate; staff fears and concerns about the disease; lack of reimbursement of services; and little has been published about the impact rehabilitation can have on the treatment of HIV/AIDS.

Rehabilitation could and should be providing an important role in the care and management of the person with HIV/AIDS, as Project Employ currently is demonstrating with individuals who have returned to the workforce. For instance, "George," a 42-year-old, symptomatic male with a CD4 count of 144, was referred to Project Employ by a local ASO in February 1993. Within a month, his case was closed due to illness. Maryland's Department of Rehabilitative Services reopened his case in June 1993 for evaluation; by September, George was receiving work adjustment training. Currently, George, with the help of a job coach, is working janitorial services at the Baltimore/Washington International Airport. Despite the advanced stage of illness, George has been successful in his efforts to secure and maintain employment.

To reverse the current trend of providing limited services to this population, the following needs to occur:

* Providers, including ASO's, who treat persons with HIV/AIDS need to be educated about the benefits of early rehabilitation, both medical and vocational, and how to make appropriate and timely referrals.

* Rehabilitation providers, including vocational counselors, must be educated to overcome their fears of the disease and the stigma that accompanies it. They must also be instructed as to the best approach to take in treating these persons.

* Research that documents the importance of rehabilitation, particularly early intervention, needs to be completed and published in peer reviewed journals. journals for publication need to be those read routinely by providers who treat persons with HIV/AIDS.

* Rehabilitation providers must work to educate providers and consumers alike about the importance of rehabilitation in the care and management of persons with HIV/AIDS.

* Rehabilitation providers need to offer services to employers as they work to accommodate the changing needs of the employee with HIV/AIDS.

* State VR agencies need to recognize HIV/AIDS as a primary functional limitation.

Other activities which are needed to help obtain employment and keep persons with HIV/AIDS employed include:

* Change SSI and SSDI policies to accommodate the changing status of this population.

* Educate employers and employees to eliminate fear and stigma. In a "safe" environment it will be easier for an infected employee to disclose his or her status. In addition, the employer should adopt policies which are in accordance with ADA. The employer needs assistance in implementing job accommodations and other special programs which will help the infected employee.

* Provide assistance to persons with HIV/AIDS who are already employed. Such assistance can include: understanding rights under ADA; tips on who, what, when, and how to disclose; and legal counsel. Case managers of the ASO's, providers treating persons with HIV/AIDS (particularly social workers), and counselors at HIV testing centers all need to be trained to assist the infected person regarding employment issues.

* Establish job banks, through the ASO's, which offer full, part-time, temporary, and voluntary positions.

References

[1.] Centers for Disease Control and Prevention, Update. (1994). Impact of the expanded AIDS surveillance case definition for adolescents and adults on case reporting--United States, 1993. Morbidity and Mortality Weekly Report, 43,160-161 and 167-170. [2.] Centers for Disease Control and Prevention, Update. (1993). Mortality attributable to HIV infection/AIDS among persons aged 25-44 years--United States, 1990 and 1991. Morbidity and Mortality Weekly Report, 42, 481-486. [3.] Bartlett, J.G., & Finkbeiner, A.K. (1991). The guide to living with HIV infection. Baltimore: Johns Hopkins University Press. [4.] Yelin, E.H., Greenblatt, R.M., Hollander, H., & McMaster, J.R. (1991). The impact of HIV-related illness on employment. American Journal of Public Health, 81(1), 79-84. [5.] O'Dell, M.W. (1993, April). Rehabilitation medicine consultation in persons hospitalized with AIDS. American Journal of Physical Medical Rehabilitation, 72(2), 90-96.

Ms. Caulfield is an independent healthcare consultant in Vermont who has worked on Project Employ as an outside evaluator. Dr. Carey is the Senior Research Associate for the American Rehabilitation Association in Reston, Virginia, and is the Project Director for Project Employ. Dr. Mason is Director of Grants and Innovations for the American Rehabilitation Association and is the Principal Investigator for Project Employ.