HIV and Disability: Updating the Social Security Listings
Objective
The Social Security Administration (SSA) uses a five-step evaluation process to determine whether applicants for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) are disabled and therefore eligible to receive program benefits. As a key part of this evaluation process, SSA maintains a list of medical conditions—organized by major body system and known as the Listing of Impairments, or simply the Listings—that the agency considers severe enough to prevent a person from doing substantial gainful activity. If an applicant’s condition is on the list, SSA will find that the individual has a qualifying disability. In addition, if an applicant’s condition is not on the list, but SSA determines that the condition is as severe as a medical condition that is on the list, the agency will award benefits. (Applicants who do not qualify for benefits based on the Listings will undergo further evaluation of eligibility based on assessment of their functional capacity, work history, education, and age.) Given their significance in SSA’s disability evaluation process, SSA conducts periodic reviews and revisions of the Listings to ensure that they reflect advances in medical knowledge and clearly identify the agency’s evaluation standards. In 2009, SSA asked the Institute of Medicine (IOM) to recommend revisions to the HIV Infection Listings, for which the IOM established the Committee on Social Security HIV Disability Criteria.
Status
This project was completed in 2010 with IOM’s issuance of a report titled “HIV and Disability: Updating the Social Security Listings.”
To conduct its review of SSA’s HIV Infection Listings, IOM convened a committee of experts in HIV management and outcomes. Over the course of its 12-month study, the committee: (1) held public hearings; (2) received statements from various stakeholder organizations; (3) reviewed the relevant literature; (4) commissioned data analyses from several of the largest ongoing cohort studies of HIV-infected persons; (5) obtained input and data from SSA, the Centers for Disease Control and Prevention, and other credible sources of information regarding HIV infection and disability; and (6) conducted site visits at nine Disability Determination Services offices across the country. The committee used this information along with the expertise of its members in formulating SSA Listings recommendations for HIV-infected adults and children.
The IOM’s report to SSA on the HIV Infection Listings provided multiple recommendations for improving and updating these listings. In particular, the report identified four HIV/AIDS-related categories under which claimants should be considered by SSA to be disabled: (1) those with CD4 ≤ 50 cells/mm3 (CD4 count is an important prognostic indicator of the remaining degree of immune function and provides an important laboratory criterion for initiation of antiretroviral therapy in patients with HIV infection); (2) those with imminently fatal or severely disabling HIV-associated conditions; (3) those with HIV-associated conditions without listings elsewhere in the Listing of Impairments; and (4) those with HIV-associated conditions with listings elsewhere in the Listing of Impairments. The report also addressed other issues which impact the effective implementation of the Listings including the need for: (1) improvements in the organization and usability of the introductory text; (2) ongoing evaluations of claims data to identify trends and patterns that may help revise and inform the relevancy of the Listings; (3) updated forms used to collect medical information about claimants to ensure they reflect Listings revisions; (4) possible inclusion of a wider array of licensed health professionals as acceptable medical sources for determining the functional effects of impairments. Based in part on the IOM’s recommendations, SSA issued a Notice of Proposed Rulemaking in February 2014 and a Final Rule in December 2016 identifying revisions to the HIV Infection Listings to reflect SSA’s program experience, advances in medical knowledge, and comments received from medical experts and the public.
Not applicable.
SSA’s Notice of Proposed Rulemaking for the HIV Infection Listings:
https://www.regulations.gov/document/SSA-2007-0082-0009
SSA’s Final Rule for the HIV Infection Listings:
https://www.govinfo.gov/content/pkg/FR-2016-12-02/pdf/2016-28843.pdf