Choosing an Employment Program
More and more AIDS service organizations (ASOs) are hearing an increasing demand from clients for help in preparing to enter the job market. Counselors at GMHC report a growing number of calls from people interested in "testing the waters" for a return to work. But there's more to helping people get ready for work than simply referring them to a resume-writing class or to the State's vocational rehab office. Few ASOs are set up to offer the kind of sustained, multi-dimensional vocational rehabilitation support that people with a complex illness like HIV require. "Typically ASOs don't understand employment, while State Departments of Rehabilitation don't understand HIV," says San Francisco vocational counselor Betty Kohlenberg, "There are only a few programs that successfully offer vocational services in an HIV-aware setting." The fact that Ryan White CARE Act funds may not be spent on vocational services does not help matters.
Vocational support can be important for people with HIV in all kinds of life situations. Some clients may have extensive work histories in highly responsible positions but need help to decide what they would like to do in this new phase of their lives. Others may have no conventional employment history or may be leaving prison and will need additional kinds of support. Lynn Wiles, of the Cascade AIDS Project in Portland, Oregon, runs support groups for her clients as part of their "Working Choices" program: "We have people just out of prison sitting next to people wearing suits and ties. It makes for interesting groups."
Most service providers contacted prefer to avoid describing their initiatives as "return to work." Jeffrey Rindler, director of the volunteer and work center at Gay Men's Health Crisis in New York says, "At GMHC we call our program "Transition to Work" because many people we serve have never worked before."
Generally, motivations reported for investigating work seem to be similar. "The clients I talk to will usually have strong reasons for wanting to return to work, like having more cash in their pocket and the opportunity to do something more rewarding and fulfilling with their time," said Michael Buitrón, a counselor at the Work Positive Assistance Project at the Harbor-UCLA Medical Center in Los Angeles. Often, a fulfilling occupation is identified as taking on a "helping" role. Brian Varner, an AIDS advocate in Knoxville, is pursuing a graduate degree in medical ethics: "I want to return to work to help others in similar situations, to advance my career, and to change my self image from 'incurable AIDS victim' into 'contributing member of society'."
Approaches to Vocational Counseling
The overriding objective of most well-considered programs is not seeing that every client obtains paid employment, because work may not be best for everyone. It's about making sure that each individual understands her or his own needs, motivations and opportunities and is able to make an informed decision about what will best support her or his overall health and well-being. Betty Kohlenberg, who runs her "Making a Plan" or MAP program at San Francisco's Positive Resource Center, calls this a client-focused model. "The best outcome is one that is best for the client -- not for the agency or the funder."
Reshard Riggins, a vocational counselor at GMHC agrees, "I want people to understand at the outset that they have nothing to lose by exploring their options. Our goal is to allow them to define what they want to do."
The MAP program is a structured, eight-week program where, Kohlenberg says, "the outcomes are not determined, but the program is. We know what people need to do to get to the point where they can make an informed decision." The Cascade AIDS Project will soon begin offering Kohlenberg's MAP program.
But others say that, once a person has expressed a desire to work, there is no substitute for learning on the job. Karen Escovitz, of the Matrix Center in Philadelphia, ran a demonstration program called "Project KEEP" that got people out into the real-world job market and gave them plenty of support as problems came up. "We helped people get started then let them learn in process. You learn your job by doing your job. There's no substitute for that," said Escovitz.
Project KEEP participants found their jobs in the competitive employment market. An innovative program for homeless people with HIV pioneered by Housing Works in New York City provides training and employment opportunities through a wide range of agency-owned enterprises, including cafes, retail stores and a catering service. The result for many participants is education, work experience and a paycheck, all delivered within a supportive environment.
For many clients paid employment is not the first step or even the ultimate goal. GMHC's Rindler says, "For some, a volunteer experience is what they are looking for. This allows people to get some experience with structure while they work on their skills."
One of the biggest fears people have when considering work is that they may not be able to stick with it. Kohlenberg stresses that continuity of employment support services is essential, especially due to the episodic nature of HIV disease and treatment side effects than can lay down unexpected speed bumps in a person's plans. "Employment counseling needs to be continuously available. Things change for people with HIV. People drop in and out of work. They need to know some one will 'be with me and won't be mad at me if I blow it'."
In spite of these challenges, people with HIV are increasingly saying they want to work. As one client told Reshard Riggins, "I'd rather die working than live without dignity."
"Of course, this is not everyone's attitude and there is no reason it should be," said Riggins, "We want people to get the information they need and understand what is best for them. After going through this process, if someone decides not to go to work, that is a success."
After fear of failure, the biggest worry for most persons living with HIV/AIDS, whether working or on Social Security disability, is fear of losing their medical coverage. But the rules about eligibility are complicated and can be different in different states and different cities.
All the experts agree: if you are receiving disability benefits, you would do well to carefully understand your situation before you plunge back into the world of work. And if you're currently working but worry about how long you can keep up the pace, time spent with a benefits counselor now may smooth the road considerably in the future if you find you need to change jobs or stop working. Jane Gelfand, a benefits attorney at Positive Resource Center in San Francisco, describes benefits counseling as "harm reduction" because so much can go wrong with a person's life and health if they lose the stability that benefits provide.
Some people report frightening difficulties when trying to restart benefits after a period of work. Dan Dunable, an AIDS advocate in Atlanta, isn't sure it's worth taking the risk: "I went off SSDI and returned to full-time employment. Since then I have had to leave full-time employment twice. And each time I applied for reinstatement of my SSDI or made any changes, it created a nightmare."
Others live in fear that they will inadvertently go over the maximum monthly earnings allowed by Social Security and get in trouble. Melvin is an AIDS treatment advocate in Westchester, New York with a per-diem hospital job: "I had to get my director to fill out a lot of papers and make sure that I didn't earn over $800.00 per month. I don't get medical coverage, holidays, sick days or personal days from my job. Worrying about getting sick and losing my Medicaid is very stressful."
The Social Security system is complex and sometimes capricious. A knowledgeable advocate can help assure that you are treated fairly. Jane Gelfand warns that Social Security personnel sometimes don't understand or follow all of their own regulations. But, she says, if every denial is challenged, persistence usually pays off. Yet outside of a handful of cities, few have access to the support of a dedicated benefits attorney to help them battle the system.
If Social Security can seem daunting, people on Long Term Disability (LTD) insurance obtained from a job have even fewer protections. As for-profit entities with few government controls, LTD insurers have been known to terminate benefits without warning, which creates a source of continuing anxiety for people with these policies who are legitimately disabled.
Making it Work
People with HIV/AIDS considering work face many other uncertainties, ranging from outdated computer skills to age discrimination to whether to disclose their HIV status. Brian Varner wonders if the gaps in his resume out him: "I'm not married with kids, so it doesn't take much effort on the part of an interviewer to conclude that I'm a gay man with AIDS."
Those who have been on both sides of the fence can be a good source of support and guidance. Ed Lortz, a retired, part time financial consultant in San Francisco, has this advice for those contemplating employment: "It is important to learn to distinguish between stress and challenge. Stress will kill you, challenging yourself will keep you alive." Also important, he says, is to tailor your living expenses to your level of income, "Financial stress will kill you just as fast."
Sam Soriano, a volunteer AIDS activist in Seattle thinks the challenges are worth it: "I thrive on being able to be useful and to learn, and to help others know that they are important and that HIV/AIDS is not the end of the life cycle but can be used to be productive and purposeful."
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.