Meeting the Legal Needs of People Living with HIV

Executive Summary

An estimated 1.2 million people in the United States are living with HIV. Legal services providers can often address the impact of destabilizing forces that may create barriers to accessing and maintaining regular health care for people living with HIV (“PLWH”). In this study, we sought to understand more broadly the efforts of legal service organizations dedicated to serving PLWH, the impact of their work, and emerging trends observed by such organizations. In 2013, the Williams Institute sought access to archival client services data from legal services providers dedicated to serving PLWH in the ten Metropolitan Statistical Areas with the largest number of HIV-positive residents. Fourteen agencies were surveyed.

Key Findings

• Eight agencies reported their total number of cases serving PLWH. Together, they fielded 22,682 cases from 2010 to 2012.
• Almost all of the agencies reported that the majority of their clients were people of color.
  • Agencies reported that the percent of clients living with HIV identifying as Black ranged from 15% to 80% with a median of 43%, and the percentage identifying as Latino/a ranged from .02%to 46% with a median of 18%. The median numbers largely reflected the racial/ethnic breakdown of individuals recently diagnosed with HIV in the United States.
• The median figures for clients’ gender identity were similar to the gender representation of individuals recently diagnosed with HIV in the United States.
  • Among those who reported specifically on their HIV-positive clientele, the median percentage of clients identified as cisgender men was 73%, cisgender women was 26%, and transgender was 2%. By comparison, 80% of those newly diagnosed with HIV in 2010 were men, and 20% were women (no figures are available
    to separate out transgender people).

• Three agencies reported specifically reaching out to intravenous drug users as a target client population, and three agencies reported targeting incarcerated populations, including individuals held in immigration detention.
• Agencies offered a broad range of legal assistance in a variety of issue areas. However, among those reporting on legal services provided to HIV-positive clients, 33% of the cases involved public and private benefits (e.g. public or private health insurance, income assistance, life and disability insurance), 20% of cases were in housing, 12% provided assistance with future planning documents (e.g. wills and advance health care directives), and 11% involved consumer and tax issues. Fewer than 5% of cases were in each of the following legal issue areas: immigration, privacy and confidentiality, employment, discrimination, and family law.
• The majority of agencies (77%) reported encountering a client’s legal need that the agency could not address by either providing services or referring the client to another agency. Of those agencies, 50%reported that this happened sometimes, and 20% reported that this happened very often.
• Among the agencies that reported having clients with unmet legal needs, criminal law issues were the most likely to be reported as a legal issue area where the agency was unable to provide or refer assistance, followed by family law issues, privacy and confidentiality, and then discrimination, and incarceration and post-incarceration issues.

• Not surprisingly, almost all of the legal issues that were the largest parts of the caseloads for respondents were only reported as unmet legal needs by two or fewer agencies. Conversely, many of the legal issue areas that took up less than 5% of the agencies’ total caseloads (criminal law, family law, privacy and confidentiality, discrimination, incarceration and post-incarceration, domestic violence, employment, and immigration) were reported as unmet legal needs by three or more agencies.
• When asked about trends in the legal needs of their clients, a few agencies reported an increase in legal needs around housing, some of which was attributed to gentrification.
• Eight agencies (67%) reported specifically planning for the Affordable Care Act (ACA). Such preparations included legal education and counseling on benefits, training navigators, community education and outreach, hiring new staff, and consulting with states and the federal government on LGBT nondiscrimination requirements in the law.

The survey highlighted a few areas for further exploration. Over 20,000 individuals living with HIV were confined in state and federal prisons as of 2010, making the rate of diagnosed HIV infection among inmates more than five times greater than the rate among people not incarcerated. While three agencies specifically reached out to these populations, further research is necessary to determine to what degree these populations’ needs are being served, especially given the unmet needs in the areas of criminal law and incarceration and post-incarceration services. Additionally, more research is needed to understand possibly emerging trends related to unmet legal matters in family law, privacy and confidentiality, and discrimination.

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