By Mark Misrok, MS Ed, CRC, President, Board of Directors, National Working Positive Coalition
Since the epidemic’s emergence in 1981, the employment-related issues, needs and opportunities of people living with HIV/AIDS (PLWHA) have greatly evolved. Public policy, understanding and service system response have struggled to keep pace, but a recent quickening of employment initiative development is unleashing new optimism.
For many, the overwhelming phenomenon of the first 15 years was people disconnecting from work, going on disability benefits, and dying shockingly soon.
As news emerged in 1996 about new, effective combination drug therapy, the landscape was beginning to change, even for the very sick.
People who had left work, leaving vocational identity and career goals fading in the rear view mirror, unexpectedly faced wanting or needing to go back to work. Some PLWHA were seeking to establish work lives and careers for the first time.
Many had experienced great change in physical capacity and in what they wanted and needed from a job. Many lacked or had outdated skills and qualifications. PLWHA and service providers struggled to understand what happens to people’s disability benefits when they went to work. Many people had personal debt, tax, or legal issues.
Fear of HIV stigma, disclosure and discrimination also influenced many to avoid change. While confronting all of these challenges, PLWHA still had to find ways to build a new life.
With help from pioneers from the HIV/AIDS, vocational rehabilitation and workforce development communities, pathways to employment for PLWHA slowly began—and can continue—to develop. The definition of success in this era of HIV/AIDS would go beyond successful treatment of HIV.
Awareness began to develop of the poverty, social isolation, and blocked vocational development of thousands of Americans living with HIV/AIDS. Excitement built for a more hopeful era of a large-scale transition to work movement among PLWHA. At the same time, others were terrified of the risks for disabled PLWHA attempting a transition to work without:
- evidence of sustained benefits from medications
- manageable side effects
- continued access to medical care and treatments
- support services that brought them the stability to consider employment
- a system of vocational services prepared to assist them effectively
Many service providers initially hesitated to adopt a recovery model for HIV/AIDS services, which would include encouragement to consider goals, including employment and vocational rehabilitation.
The movement emphasizing employment began with MTS and Housing Works in New York, Positive Resource Center in San Francisco, Whitman-Walker Health in DC, and AIDS Project Los Angeles, and continued with the National Working Positive Coalition and several community-based initiatives around the country. Building on the release in 2010 of the first-ever National HIV/AIDS Strategy, the Department of Labor’s Office of Disability Employment Policy has led at the federal level, with the key role of employment recognized among social determinants of health. Pioneering initiatives also emerged from the Department of Housing and Urban Development’s Office of HIV/AIDS Housing. The Department of Justice and Equal Employment Opportunity Commission emphasize and enforce workplace protections under the Americans with Disabilities Amendments Act.
In a 2008 national survey of more than 2500 PLWHA by Dr. Liza Conyers of Pennsylvania State University, a significant percentage of employed respondents reported positive health outcomes and reduced risk behaviors after transitions to work.
New initiatives and coordination of existing resources are increasingly cause for optimism. If information, resources and supports were available, many PLWHA could better equip themselves to make well-informed decisions about employment. Potentially many could succeed in transitions to work.
“The first fifteen years of the epidemic were about dying—first quickly, then a little more slowly, but it was all about dying.
The next five years were about not dying.
It’s my hope and belief that this next era of the HIV/AIDS epidemic is about living, really learning to live fully, with HIV.”
Eric Ciasullo, founding board member, National Working Positive Coalition