What We Need
Results of the “Work, Financial Stability and Aging with HIV/AIDS” survey
by Hank Trout
On November 13, 2017, NMAC (formerly National Minority AIDS Council) announced the recipients of the 2017 HIV 50+ Strong & Healthy Mini-Grant Program. The yearly mini-grant program allows the group’s HIV 50+ scholars to develop and implement a project to educate and engage HIV 50+ community members. Fourteen grantees were awarded up to $2,500 in the categories of community education, community outreach, and community engagement in their particular areas. Each grantee is affiliated with an organization that acts as the fiscal sponsor for the grant. Some grantees chose to coordinate social events, daylong conferences, and other information-gathering programs.
One grantee, Michael G. Smith of Santa Fe, New Mexico, designed a survey on “Work, Financial Stability, and Aging with HIV/AIDS.” Smith told A&U, “I chose to use the funds to conduct a survey and to do focus groups here in New Mexico and two in San Francisco to look more deeply into work and financial security and aging with HIV.” The results of those focus groups and survey were presented at a workshop at USCA2018 in Orlando, Florida, in September.
Six focus groups were held in New Mexico and San Francisco with PLWH/A and service providers. The PLWH/A focus groups revealed that finances and work-related issues are a tremendous source of stress and anxiety for participants. Many expressed being tired of living in poverty and confused about which benefits are available to them and who provides them. Most participants who are living on Social Security Disability Insurance did not know about or understand about Social Security Work Incentives and feared losing benefits if they work. This confusion was attributed partially to misinformation regarding working and the effects of earnings on benefits, no clear understanding of how to continue working while on disability, mixed or incorrect messages about working from service providers, and a “mistrust of systems.” Most also indicated wanting to be more self-confident and self-sufficient and to decrease their dependence on others and/or “the system,” wanting to be more productive and engaged in their community.
The “Work, Financial Stability, and Aging with HIV/AIDS” survey, while limited in scope (seventy-seven respondents to the survey posted on Facebook), revealed that more than fifty percent of respondents live on SSDI; that only sixteen percent were continuing to work on SSDI; that only 40.3 percent considered their financial status “stable” while 28.6 percent considered theirs to be “declining”; and that their other major concerns regard long-term senior care (71.1 percent), housing stability (43.4 percent), medical and prescription insurance coverage (38.2 percent), and food security (34.2 perecent).
Smith emphasized that for PLWHA, “Housing stability and income security are critical to the success of the medical model.” Stabilizing financial security becomes even more important as PLWHAs age. Toward that goal, among the recommendations presented at USCA2018 were (1) a simple, concise, user-friendly website and mobile application that provides accurate information and resources on aging and age-related topics; (2) training and education for users and service providers; and (3) a resource directory of related federal, state, and local programs and agencies.
The information garnered from Smith’s efforts will be used to update the Phoenix Rising HIV/AIDS Re-entry Project website, which is being redesigned, “a Phoenix Rising 2.0, twenty years later, what is still relevant and if anything is new,” Smith said. Phoenix Rising fosters independence, empowerment, and self-sufficiency for both those who are newly diagnosed and those who have lived with HIV for years. The project was created in 1997 in response to the advent of HAART medications and other life-prolonging advances which, for many, changed living with HIV from a terminal diagnosis to a chronic illness. As many people living with AIDS began feeling better and started preparing to live rather than to die, the need for financial planning and other preparation arose. Phoenix Rising enables PLWHAs with disabilities to assess whether they are ready to return to work or school, how to plan and implement that return, and how to return to work without jeopardizing SSDI and/or other benefits. The project also familiarizes clients with laws that protect people with disabilities against employment discrimination as well as money-management strategies to help navigate the expense of aging with HIV.
Further information about the Phoenix Rising HIV/AIDS Re-Entry Project can be found at www.phoenixrisingreentry.org. Additional information regarding NMAC’s mini-grants can be found by logging onto NMAC’s website at http://www.nmac.org.
Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-eight-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.