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Social Security Benefits for People Living with HIV/AIDS

People living with HIV/AIDS may qualify for the following disability benefits provided by the Social Security Administration (SSA): Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). This booklet serves as a resource guide for social workers and other care providers to assist clients with determining eligibility and applying to these federal programs.

Title XVI of the Social Security Act authorizes the SSI program. This program is designed to provide financial support for people with disabilities and extremely low incomes. The SSDI program is authorized by Title II of the Social Security Act and works as an insurance program for people with disabilities.

People living with HIV/AIDS can begin the Social Security application process immediately after quitting work or limiting work hours because of failing health or when they determine that they no longer are able to work. Because the process is nearly the same, clients can apply for both programs at the same time.

Brief Summary of Eligibility

The medical requirements are the same for SSI and SSDI, and the same process determines disability. Disability is based on the client’s inability to work because of a medical condition. A person may be considered disabled if he or she is unable to perform any kind of substantial gainful activity (SGA). As a rule, earnings of $830 per month or more are considered "substantial." Finally, the person’s inability to work must be expected to last at least one year, or the condition keeping the person from working must be so severe that he or she is not expected to live.

Because most opportunistic infections are often severe enough to limit a person’s ability to work, the chances are good a person with symptomatic HIV infection will be eligible for SSDI or SSI benefits if he or she meets the other eligibility factors mentioned below. However, because HIV disease affects each person differently, some people may be less impaired and thus able to work, so they may or may not qualify for SSDI. The application and review process may take a long time. Clients who qualify will receive benefits retroactive to the date of application.

Here are some of the qualifications for SSDI:

An individual:

  • must be a U.S. citizen or lawfully present in the United States and have a Social Security number
  • must be medically disabled
  • must be unemployed and unable to perform substantial gainful activity, defined as earning less than $ 830 per month
  • must have worked at least five of the past 10 years at the time of application. Most people qualify for SSDI by working and paying Social Security taxes. The amount of monthly benefits depends on how many work credits have been earned.

The amount a person receives in SSDI benefits depends on the individual’s earnings history. As a general rule, more earnings mean higher benefits. Clients may contact the local Social Security field office ( via telephone or Internet) and request a form to receive a free statement that contains a record of their earnings and an estimate of benefits.

Some qualifications for SSI state that the individual:

  • must be a U.S. citizen or have maintained permanent legal status for five years
  • must have a Social Security number
  • must be medically disabled
  • must be unemployed and unable to perform substantial gainful activity, defined as earning less than $830 per month in 2005
  • must have countable income less than the maximum SSI benefit
  • must have assets amounting to less than $2,000 for individuals and $3,000 for couples. When figuring your assets, SSA does not count your home, your car (up to $4,500 or entire car value if used to obtain medical treatment) and most of your personal belongings.
  • must provide medical records, such as blood tests, laboratory work, physicals, and the like
  • must be unable to work for a year or more due to disability

As the name implies, Supplemental Security Income supplements a person’s income up to a certain level. The level varies from one state to another and annual cost-of-living increases are frequently applied. Clients may check with a local SSA field office to find out more about the SSI benefit level in their states.

Required Documentation

Here is a list of some documentation SSA may request:

  • Social Security number card (SSN)
  • birth certificate (BC)
  • SSN and BC of all family members applying for benefits (for example, dependents)
  • copy of most recent W2 form
  • documentation of all income and assets (for example, bank statements, unemployment records, car registration, rent receipts, and the like)
  • names and addresses of doctors, hospitals, and clinics the client has been to for treatment
  • an explanation of how HIV/AIDS has affected the client’s activities of daily living
  • a list of jobs held over the past 15 years
  • medical records, such as blood tests, laboratory work, physicals, and the like

Note: Clients who qualify for SSDI will most likely qualify for Medicare after receiving benefits for 24 months. Clients who qualify for SSI will most likely qualify for Medicaid and food stamps. For more information on food stamps and Medicaid, contact a local social services office. For more information on Medicare, contact a local social services office or SSA field office.

Determining Disability

Social Security works with a state agency called the Disability Determination Service (DDS) to evaluate claims. Together, a disability evaluation specialist and a doctor decide whether the client’s impairment is severe enough to impair his or her ability to work. The DDS team evaluates how well the client functions in three general areas: daily activity, social functioning, and the ability to complete tasks in a timely manner. SSA publishes a list of HIV-related impairments that are considered severe enough to prevent an individual from performing substantial gainful activity. Here are a few examples:

  • Bacterial infections
  • Fungal infections
  • Protozoan infections
  • Viral infections
  • Malignant neoplasms
  • Conditions of the skin or mucus membrane
  • Hematologic abnormalities
  • Neurological abnormalities
  • HIV wasting syndrome
  • Diarrhea
  • Cardiomyopathy
  • Nephropathy
  • Other chronic infections requiring repeated treatment

Note: Mental disorders, which may be co-factors associated with HIV, should also be considered.

You may contact your local field office for a complete list, including some that specifically apply to women and children. If your client has symptoms of HIV infections that are not included in the SSA list of impairments, the DDS specialist will evaluate how frequently these conditions occur and how they affect the client’s ability to function in the three general areas.

Determining Disability

Applications received by SSA from people living with HIV are given priority and are processed as quickly as possible, usually three to four months. Clients do not need all the information mentioned earlier at the time of application. However, you must remember this may significantly slow down the claim process.

You can play an active and important role in ensuring that your client’s claim is processed accurately and quickly. Educate clients on the importance of maintaining thorough and updated documentation on their illness and how it affects daily living. Keep records of your observation of the client’s inability to work because of illness. Use a calendar to jot down brief notes about your client’s condition or any daily activities he or she is no longer able to perform as a result of the illness, including physical, psychological, or mental impairments.

Maintain communication with your client’s medical professionals. Many doctors are not aware of the documentation required for disability. In addition, keep confidential copies of your client’s medical records. Often, clients misplace these documents, and a request for duplicates may prolong the application process.

Presumptive SSI Benefits

Under certain circumstances SSA will pay a client benefits up to six months before a final decision is made on his or her claim. If the client is not working and meets the aforementioned SSI eligibility guidelines regarding income and assets, he or she may request an SSA 4814 (SSA 4815 for children) form at a local field office. This form must be completed by a doctor or other medical personnel to certify that the individual’s HIV infection severely limits his or her ability to work. The law allows SSA to "presume" disability with a medical diagnosis of HIV symptomatic infection. If decided later that the client is not disabled, he or she will not have to pay back any money received.

For confidential help in filing a claim, clients may contact the local Social Security office to make an appointment or call 1-800-772-1213 toll-free to file by phone.

More Information

You can get recorded information on SSA 24 hours a day, seven days a week by calling 1-800-772-1213 toll-free. You may speak to an SSA representative between 7 a.m. and 7 p.m. on business days. People who are deaf or hard of hearing may call the toll-free "TTY" number: 1-800-328-0778. You may also visit the SSA Website.

Disability Evaluation Under Social Security (often called "The Blue Book") contains the medical criteria used by SSA to determine disability. You may request a copy by fax (410-965-0696) or write to: SSA, Office of Communications, Public Information Distribution Center, P.O. Box 17743, Baltimore, MD 21235

Resources

  • Social Security Administration. (1995). Social Security benefits for people living with AIDS  (SSA Publication No. 05-10019). Washington, DC: Author.
  • Social Security Administration. (1997). A guide to Social Security and SSI benefits for people with HIV infection (SSA Publication No. 05-10020). Washington, DC: Author.
  • Social Security Administration. (1999). Disability.
  • Social Security Administration. (2005). Social Security for people living with HIV/AIDS (SSA Publication No. 05-10019). Washington, DC: Author.
  • Social Security Administration. (2005). Disability planner
  • Social Security Administration. (2005). Disability evaluation under Social Security: Blue book

This fact sheet was created by the NASW HIV/AIDS Spectrum: Mental Health Training and Education of Social Workers Project, Evelyn P. Tomaszewski, Project Director. (Contract # - CMHS 280-04-0120).