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One of the most stressful problems faced by many people living with HIV is trying to support themselves and cover their bills. Fortunately, in the US, there are benefit programs that can help.
Note: During the COVID-19 pandemic, eligibility requirements for some benefits had been temporarily expanded, although some of these measures have expired. Check the website for the specific program in which you are interested to find out about any changes and when they expire.
What Are Benefits?
If you are not working or if you are working and earning a limited income, benefits may be available to help you provide for your basic needs.
Benefits are a form of US government assistance that may provide you with monthly income, health insurance, food stamps (SNAP), or help paying your rent or home mortgage. Benefits are important because they can increase your access to housing, health care, medication, opioid substitution therapy (a drug treatment also known as methadone maintenance or suboxone), in-home support services, food, job training, and assistance with finding a job. If you are not working or if you are working and earning a limited income, benefits may be available to help you provide for your basic needs.
Benefit programs are run by the county, state, or federal (national) government. Federal programs almost always have the same rules. State and county programs vary depending on where you live.
Most benefit programs require that you be disabled based on HIV, mental health, and/or other conditions. Other programs require that you have limited income and assets (money and/or possessions). Your immigration status or where you live (residency) may be important for some programs.
1. County or General Assistance
This benefit may be available through your county and is usually based on financial need. You have to have limited money in order to be eligible for county assistance. It may only pay part of specific expenses, such as rent or utilities. Counties may also require rent receipts, volunteer work, job training, and/or an application for Supplemental Security Income (SSI), a federal disability program. Usually, this type of assistance provides the least amount of money available so you should see if you are eligible (meet the requirements) for any of the other programs listed below. Contact your county for more information.
2. State Disability Insurance
This benefit is only available for people who have a recent work history in California, New Jersey, New York, Puerto Rico, Hawaii, or Rhode Island. Your health care provider or psychologist has to certify that you cannot do your regular job due to a disability, such as HIV-related fatigue. It pays about 55 percent of the income you earned before your disability (pre-disability income) and is not taxed (unless it is a substitute for unemployment insurance benefits). Contact the Employment Development Department in one of these states.
3. TANF (Temporary Assistance for Needy Families)
This used to be called AFDC (Aid to Families with Dependent Children), but since 1997 it has been called TANF. The Office of Family Assistance, which is a part of the US Department of Health and Human Services (DHHS), manages TANF programs, including tribal TANF programs operated by American Indian/Alaskan Native tribes. States receive monies from the federal government to distribute to their residents. Because states give out the assistance, the rules for qualifying vary by state. Single parents, pregnant women, two-parent families in which one or both parents are disabled, and some other family situations may qualify you for TANF. Income and resource limits, as well as time limits (usually five years) and work requirements apply. SSI benefits may affect eligibility.
If you are an eligible single parent, you may be able to get TANF grants for your children and/or yourself. TANF can also come with Medicaid, but the program is limited to five years unless you qualify for a special exception. Contact your state for more information. If you are unable to work after five years, you probably want to apply for Social Security Disability.
4. SNAP (Supplemental Nutrition Assistance Program)
SNAP is a federal program formerly known as the Food Stamp Program. It helps low-income families buy food. It is intended for people who are working for low wages, working part time, unemployed, receiving public benefits, elderly or disabled, or homeless. You can apply at your local welfare or Social Security office. To find your local SNAP office, go to the SNAP State Directory of Resources or look for listings online or in your phone book under "public assistance," "social services," or "food stamps."
5. Social Security Disability
There are two relevant programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). You can get SSDI if you have a fairly long formal work history. SSDI is not a need-based program and has no asset limit. The amount you get is based on your work history. After you have received SSDI for 24 months, you are automatically entitled to Medicare coverage.
You can get SSI if you have limited income and assets and do not qualify for SSDI. People who qualify for SSI may also receive assistance through Medicaid and food stamps (SNAP). Some people get both SSI and SSDI if their SSDI is less than the SSI limit (the maximum federal SSI amount is $841/month for an eligible individual in 2022, although most states pay more).
a. Medical Rules: According to Social Security, you are considered disabled when, due to a medically documented physical condition, you are unable to engage in substantial gainful work activity. You will be found disabled if you meet the following criteria:
- You cannot do work that you did before;
- Social Security decides that you cannot adjust to other work because of your medical condition(s); and
- Your disability has lasted or is expected to last for at least one year or is expected to result in death
Many people think your CD4 count will determine if you qualify for this benefit, but that is not true. Instead, Social Security relies on repeated symptoms of HIV or AIDS that limit your ability to work. The decision is based on functional skills and abilities, taking into account how much work you can do. A person does not have to have AIDS; HIV symptoms may be enough. The more you report the worst moments and days to your medical provider, the easier your claim for this benefit will be. However, generally, chronic diseases beyond HIV symptoms are required to be approved for benefits.
b. Alcohol and Drug Rules: People who use drugs or alcohol are not prohibited from receiving SSI, as long as drug addiction or alcoholism is not their primary disability. However, in practice, judges and hearing officers who decide SSI cases may be less willing to give benefits to people with substance abuse problems.
c. Incarceration Rules: You are not eligible for SSDI or SSI if you have a felony warrant or are in violation of parole or probation. If you have one of these warrants that Social Security knows about, try and work with an advocate to get rid of the warrant. Otherwise, you may never be able to get this benefit or be cut off and owe Social Security back. Convictions do not affect your ability to get this benefit. However, regular disability benefits are not paid for the months a person is incarcerated (although under certain circumstances beneficiaries may still receive money).
d. Immigration Rules: For SSDI, you have to show that you are lawfully residing (living with proper immigration documents) in the US (including any temporary status). For SSI, you have to show that you were lawfully residing in the US before August 22, 1996, have been granted asylum, are a refugee, are having your deportation withheld, are a Cuban or Haitian entrant, or are a member of an American Indian tribe born abroad. For more information on which non-citizens qualify for SSI, please look at this Social Security webpage.
It is important to know that, even if you are Lawfully Admitted for Permanent Residence (LAPR), if you entered the US after August 22, 1996, you may not qualify for SSI for the first five years as an LAPR, even if you have 40 quarters of qualified earnings.
Some states have adopted their own programs for immigrants who are not eligible for SSDI or SSI because of immigration status. Contact your county for more information.
e. Dependent and Spousal Benefits: If you get SSDI, your spouse and/or your children may be eligible for income too. Likewise, if your spouse gets SSDI, you and/or your children may be able to get some income.
SSDI and/or SSI are usually the highest paying public income sources, so it is important to try and win your claim.
1. AIDS Drug Assistance Program (ADAP)
ADAP provides US Food and Drug Administration (FDA)-approved HIV-related prescription medications for uninsured or underinsured individuals. You may have no health insurance, be on Medicare, or have private insurance with co-pays for your medication. Each state has its own requirements and list of covered HIV-related drugs, so requirements and medications provided vary by state. All states want proof that you are living with HIV, but not all require that you be at a certain stage of the disease. States also vary in whether they look at income only or income plus assets when they decide whether you qualify for ADAP.
If you are unable to get medications through your state's ADAP program, you may be able to get them through a State Pharmaceutical Assistance Program (SPAP). Contact your county or an AIDS service organization for more information.
Currently, Medicaid covers various categories of low-income adults and children. Because it is an entitlement program, everyone who meets the guidelines can get services. Services include mandatory benefits and states can also choose to offer a broad range of optional benefits, so coverage depends on where you live. Insurance through Medicaid may come automatically with TANF or SSI. Some counties also provide Medicaid if you have limited income or resources. Starting in 2014, you no longer have to be disabled or fall into another qualifying category to be eligible for Medicaid. The program is available to some people (depending on whether your state expanded Medicaid eligibility) who have annual income up to 138 percent of the federal poverty level. Contact your county or an AIDS service organization for more information.
Medicare covers people over the age of 65 and those who are disabled (with a work history) or blind. You automatically qualify for Medicare after 24 months of SSDI payments. Medicare is divided into several different parts, which have different application procedures; all except Part A are optional. These consist of:
- Part A (limited hospital care, skilled nursing, some home care, and hospices)
- Part B (health care providers, outpatient hospital services, and other medical care)
- Part C ("Medicare Advantage," or access to managed care plans)
- Part D (outpatient prescription drugs)
Co-payments, deductibles, and other financial aspects vary by plan. Many people living with HIV who accessed medications through Medicare Part D fell into the "doughnut hole" where they had to pay 100 percent of the costs of their drugs until they paid $4,850 (in true-out-of-pocket costs, or "TrOOP") and moved into catastrophic coverage. The Affordable Care Act (ACA) intended to shrink the doughnut hole until it would close in 2020. However, the ACA is contested and some of its provisions have been changed. COVID-19 relief legislation included temporary help paying for health insurance coverage, but many details of the US healthcare system are in a state of change. See our fact sheet The Affordable Care Act and Women in the US for more information on that law.
In addition, as of January 2011, you can use ADAP expenses to count towards your TrOOP, which will make it easier to get through the Medicare Part D "doughnut hole" faster. You may also want to see if you can get Medicaid to pay for your Medicare premiums and costs that Medicare does not cover. If you are not able to get Medicaid, you may want to see if you can get ADAP.
4. Other Programs
Many states and cities run Ryan White clinics, which receive money from the federal Ryan White HIV/AIDS Program, to help people with no other access to care. The federal program is funded for a limited time, with periodic extensions of that period. Clinics and other local programs for people living with HIV vary widely by state. Contact your local AIDS service organization to see what is available in your area.
Taking Care of Yourself
If you are unable to work due to physical, mental, or mood-related symptoms of HIV and/or other conditions, you may qualify for benefits.
- Be persistent with your applications, appeal any denials, and try to get an advocate or attorney to represent you through a local Legal Aid society or Legal Services office, an AIDS service organization, or a private attorney's office. Ryan White clinics also help you sign up for benefits.
- See your medical provider as often as possible for the best medical treatment as well as support with your benefits claims
- Report all symptoms to your medical provider and keep documentation of symptoms, medications, and treatment to help when you file a claim
- Fight for what you deserve - the most income and health insurance that you and/or your family are allowed. Nonetheless, know that many people are denied benefits. Even if you did all you can, you may not get the financial help you need for reasons you cannot control.
Much of the above information was supplied by Positive Resource Center (prcsf.org) and from materials prepared by Treatment Access Expansion Project.
The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls. We are a recognized leader in the fight against HIV, revolutionizing the availability and accessibility of meaningful and relevant information designed specifically for women and girls living with HIV. The Well Project does not control, promote, distribute, endorse or market prescribed substances associated with the treatment of HIV/AIDS or related diseases and should in no way take precedence over the qualified assessment and diagnosis of a medical professional or certified physician/doctor. The information contained on this website is for educational purposes only.