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 Many lacked or had outdated skills and qualifications.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.
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“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.”
2004
Eric Ciasullo, founding board
member, National Working Positive Coalition
