HIV and Disability: Modernizing the Social Security Inventory

1. HIV and Disability:Modernizing the Social Security Inventory Nina Rothschild, DrPH

2. Disability Benefits and the SSA • The Social Security Administration provides disability benefits under two programs: the Social Security disability insurance program for people who paid Social Security taxes; and the Supplemental Security Income program for people with low income and limited resources. An individual whose Social Security benefits are very low and who has limited other income and resources may qualify for benefits from both programs.

3. How Do I Qualify, and When Do Benefits Kick In? • Individuals who are employed and pay Social Security taxes earn Social Security credits. (The majority of individuals earn the maximum of four credits per year.) • The number of years of work needed for disability benefits depends on the age at which an individual becomes disabled. • Most people need five years of work in the 10 years prior to the year in which they become disabled. • Younger workers need fewer years of work. • If an individual submits an application and the application is approved, his or her first Social Security disability benefit will be paid for the sixth full month after the date on which the disability began.

4. Decision-Making by the SSA • SSA employs a screening tool (the Listing of Impairments) to make more efficient the process of determining which individuals have such substantial limitations that they are not employable and are eligible for benefits right away. • To determine eligibility for individuals who do not meet the criteria in the Listings, SSA uses additional data concerning vocational capability, employment history, schooling, age, etc.

5. The Disability Listings • The Listings are arranged by 15 body systems, e.g., neurological, musculoskeletal, immune systems. • The Listings must be consistent with progress in medical care and diagnosis and the evolving characteristics of employment in the USA and are intermittently reexamined.

6. Revising the Listing for HIV • The SSA requested advice from the Institute of Medicine on revising the Listing for HIV infection. • SSA has been supplying disability benefits for people living with AIDS since 1983 and approved the current HIV Listings in 1993.

7. Revisions Process • A committee of the IOM examined the literature concerning the diagnosis and management of HIV/AIDS and examined the data on the helpfulness of employing clinical indicators to forecast the manner in which differing levels of infection-related impairment will influence a PLWHA’s capacity for sustained employment. • The committee gathered data from SSA and other entities active in the field of HIV/AIDS, consulted with program arbitrators who make determinations concerning disability requests, and obtained participation from an array of stakeholders, incorporating members of the general public as well as private groups of advocates.

8. Changes Will Only Affect New Applicants • The IOM clearly states that the proposed changes to the Listings impact only new HIV-positive SSDI and SSI applicants and will not affect PLWHAs currently on disability. 

9. IOM Committee Conclusions • The HIV Infection Listings do not accurately mirror medical progress. During the course of the past 15 years, medications have transformed HIV into a chronic, more controllable illness for many infected individuals. A greater number of people are able to survive for a long time while infected with HIV. • Patients, however, need to take medication for the rest of their lives, and some medications have substantial side effects. • Moreover, PLWHAs have a heightened occurrence of several chronic illnesses usually connected to aging.

10. IOM Committee Conclusions • A complicated illness necessitating complicated treatment regimens can pose a major impediment to functioning and may render PLWHAs incapable of going about their daily business or having a job. • Disability may be due to the illness (i.e., HIV-related dementia) or from a co-morbid condition (i.e., cardiovascular disease or osteoporosis) or from the unpleasant effects of treating the illnesses. • The HIV infection listings must be brought up-to-date to incorporate these advances in managing the disease.

11. IOM Committee Conclusions • The report draws attention to the need to update the HIV infection listings to include an evaluation of a claimant’s ability to function in a work situation. • No specific test can completely assess a person’s ability to function, but various instruments can examine individual elements.

12. Qualifications for Disability • After examining the medical literature, the committee ascertained several descriptive categories within which PLWHAs can be determined to be disabled: • A CD4 cell count at or below 50 cells per cubic millimeter of blood serum (i.e., an advanced stage of illness) • One of a few rare but fatal or severely disabling HIV-associated conditions, such as pulmonary Kaposi’s sarcoma, certain lymphomas, dementia or progressive multifocal leukoencephalopathy • An HIV-associated condition that appears in another section of SSA’s full Listing of Impairments, such as cardiovascular disease, chronic kidney disease, and hepatitis • An HIV-associated condition that is not already included in any other section, such as neuropathy, neurocognitive disorders, and wasting syndrome

13. Disability Benefits for Children • Children who are on disability have to reapply for benefits when they reach 18 years of age. To foster an even transition to obtaining disability benefits as an adult, the pediatric Listing should mirror to the greatest extend possible the adult Listing. Nevertheless, conditions occurring only in children and not in adults (such as neurological signs of HIV infection and HIV-connected growth abnormalities) should be preserved, and age-appropriate CD4 cell counts should be employed in decision making concerning eligibility for disability.

14. Next Steps for the SSA • In order to enhance the usefulness of the HIV Infection Listings, the IOM report specifies a number of steps for the SSA to follow: • The introductory text leading the listings assists in explaining how to execute the listings but in its present form is perplexing, lacks coherence, and is tough to decipher. The SSA needs to re-craft the introductory text in order to make it more straightforward and better organized.

15. Next Steps for the SSA, Cont’d • In order to enhance the usefulness of the HIV Infection Listings, the IOM report specifies a number of steps for the SSA to follow: • The SSA gathers data on every claim presented, and examining the data may help in noticing trends and relationships in managing HIV as well as in identifying newly appearing clinical signs of infection, determining negative outcomes of treatment over the long term, assessing the results of not adhering to treatment and the development of resistance, and providing information for subsequent revisions to the Listings. In order to facilitate these endeavors, the SSA needs to change its policy of not providing its data to members of the public. Permitting the public to examine the data may enhance the appropriateness and usefulness of the HIV Infection Listings.

16. Conclusion • The process by which the SSA assesses claims submitted by PLWHAs once was based on the early conviction that HIV infection rapidly led to opportunistic infection and early death. • Scientific progress makes this viewpoint obsolete: PLWHAs can live for a long time with a complicated illness. • We have the capacity to use clinical markers and precise sets of medical conditions to determine disability in PLWHAs. • Revising the HIV Infection Listings to more accurately mirror clinical knowledge at the present time will enable the SSA to better pinpoint individuals who do require Social Security disability assistance.

17. Community Reaction POZ: "Confusing matters further, the IOM report only addresses changes to SSDI and SSI qualification requirements—the committee sidesteps the important issue of access to care that, for thousands of people living with HIV, is tied to SSA disability status. At present, people living with HIV who are uninsured can access Medicare or Medicaid, once they have been deemed disabled by SSA. While the new recommendations may make it easier for some people living with HIV to qualify for these public health insurance programs, it is possible that the absence of list of serious opportunistic infections—some of which can occur at CD4 counts above 50—will hinder the ability of others to access health care when they need it.”

18. Community Reaction, Cont’d • "Although the issues of … access to care [is] critical in the discussion of Social Security disability benefits," the IOM report authors write, "in-depth discussion of the means by which people receive treatment and medications was deemed outside the Committee’s scope." SSA, in turn, will be left to grapple with the issue of how to retain people in care and on ARV treatment if the criteria for disability benefits are changed, a task that will likely be made much more difficult in light of existing AIDS Drug Assistance Program (ADAP) waiting lists for uninsured or under-insured people living with HIV and other changes stemming from the recent passage of health care reform legislation."

19. Next Steps? • How should the Policy Committee and the Ryan White Planning Council as a whole respond to the IOC Committee recommendations?