Because treatment has improved the quality and length of life for many people living with HIV, Social Security no longer views HIV as a terminal illness.
An advocate at the Legal Council for Health Justice, Marina Kurakin, MSW, MFA outlines how you can protect yourself in a Social Security review
In 2017, Social Security changed the way it reviews disability cases for individuals approved for SSI/SSDI based on their HIV/AIDS status. (SSI stands for “Supplemental Security Income” and SSDI stands for “Social Security Disability Income”.) As a result of this change, every person determined to be “disabled” by the Social Security Administration (SSA) needs to undergo a review of their medical and behavioral health. Before then, people living with HIV/AIDS had been exempt from these reviews.
The reviews come at different cycles, depending on SSA’s opinion of your chances for medical improvement. When it’s time for Social Security to look at your case, you receive a Continuing Disability Review (CDR) form in the mail. It’s your responsibility to complete this form and include information about current conditions, medications, tests, and medical providers.
You also have to answer questions about how you manage daily activities and state whether your condition has gotten worse, remained the same, or improved.
Before 2017, individuals approved for disability based on HIV status were protected from medical CDRs. Even if their conditions improved, as long as they had no reported work earnings, SSA did not investigate the medical progress of folks living with HIV.
CDRs are different from work-related reviews, which deal with an individual’s working and earning while also receiving SSI/SSDI. Positive individuals have always been subject to work-related evaluation, as every disability recipient must follow work reporting guidelines.
Because treatment has improved the quality and length of life for many people living with HIV, Social Security no longer views HIV as a terminal illness. This gives Social Security the power to look for improvements through CDRs.
Individuals living with HIV who meet the following criteria continue to be exempt from a CDR:
- Are diagnosed with Multicentric Castleman disease; primary central nervous system or primary effusion lymphoma; progressive multifocal leukoencephalopathy; or pulmonary Kaposi sarcoma
- Have functional limitations due to HIV (which limit your ability to complete activities of daily living like walking, sitting, standing, or lifting)
- Have a low CD4 count (50 or less)
- Have a CD4 count of 200 or less (or CD4 percentage of less than 14) plus a low BMI (body mass index) or hemoglobin count
- Experience HIV complications requiring at least three hospitalizations within a calendar year.
When POSITIVELY AWARE first wrote about this rule change (positivelyaware.com/articles/briefly-mayjun-2017), we weren’t sure how quickly it would go into effect.
After a year, AIDS Legal Council, a program of Legal Council for Health Justice in Chicago, has seen a huge rise in CDRs among our HIV-positive clients. Unfortunately, we often hear from individuals after they are found no longer disabled and lose their only source of income and insurance. One of my clients who came to us to appeal his CDR ruling had lost his disability income after more than 20 years of receiving benefits.
When we get calls about CDRs, one of the first questions we ask is about current treatment. Where are you going to a doctor, therapist, or specialist? How often do you go? What symptoms do you experience? Any side effects from medications? Would you be able to maintain a full-time job? Why or why not? Have you worked or attended any classes or trainings?
Dealing with Social Security is often a frustrating and frightening process. Knowing the rules and talking with an attorney is usually a good idea.
In Chicago, you can contact the AIDS Legal Council by calling our intake line at (312) 427-8990. We’ve been providing free legal services to people living with HIV for 31 years. In 2018, we served 1,100 HIV-positive clients. If you live in Cook County, we would love to answer your questions.
Lots of other cities and states have their own Ryan White legal services, which can help walk you through the disability review minefield.
The most important bits of advice we can give is to continue getting regular care, reach out for help, and respond to any mail you receive from Social Security.
Current cases from our files
- A 30-year-old, born with HIV and now with undetectable viral load. Social Security did not find evidence of disability from his CDR or medical records. He is now navigating his first work attempts as a 30-year-old and was connected to employment assistance.
- A 45-year-old, originally approved for SSI based on HIV and depression. He was deemed no longer disabled after submitting a CDR. With our help, he appealed the decision and we argued disability based on his low IQ. He now has his benefits back.
- A 41-year-old originally approved for benefits based on HIV and bipolar disorder, who stopped getting behavioral health treatment and was found no longer disabled. There were no recent medical records pointing to a disabling condition or current medical treatment.
- A 27-year-old, approved based on AIDS and neuro-syphilis, just received a denial after completing a CDR. He is now undetectable, but not receiving regular care.
- A 58-year-old, originally approved based on an AIDS diagnosis 25 years ago, was found newly disabled due to behavioral health. He is getting weekly therapy and under the care of a psychiatrist.
Marina Kurakin, MSW, MFA, is a legal advocate at the Legal Council for Health Justice, where she leads legal clinics focused on health insurance and public benefits, including one at TPAN every Thursday. She has extensive experience in working with refugees, people living with HIV, and other vulnerable populations. Because health is linked to social determinants, she concentrates on increasing resource access for all.