Updated April 2013
One of the most stressful problems faced by people living with HIV (HIV+) is trying to support themselves and cover their bills. Fortunately, there are benefits programs that can help.
Benefits are a form of government assistance that may provide you with monthly income, health insurance, food stamps, or help paying your rent or home mortgage. Benefits are important because they can increase your access to housing, health care, medication, methadone maintenance (drug treatment), in-home support services, food, job training, and assistance finding a job. If you are not working or if you are working and earning a limited income, benefits may be available to you so that you can 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.
Some 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 (possessions). It is important to know that you may qualify for benefits that can act as a safety net and help improve your quality of life if you are unable to work or earn a limited income.
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. 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 that enable you to qualify) for any of the other programs listed below. Contact your county for more information.
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.
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 the TANF and tribal TANF programs. 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, 2-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 5 years) and work requirements, apply. SSI benefits may affect eligibility. To find help for your family, go to this website and enter your state of residence.
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 time 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.
SNAP is a federal program, formerly known as the Food Stamp Program that 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 SNAP’s local office locator website or look for listings in your phone book under “public assistance,” “social services,” or “food stamps.”
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; maximum benefits are $2533 per month in 2013. 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 federal SSI rate is $710/month for an individual in 2013, 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 to result in death.
In order to prove disability, it is important to see a medical provider and/or mental health practitioner on a regular basis and report all symptoms that may prevent you from working. Report physical, mental, or mood-related symptoms you are experiencing, such as:
- Persistent diarrhea
- Recurrent yeast infections, bladder infections, and/or pelvic inflammatory disease
- Weight loss
- Fungal and/or bacterial infections
- Night sweats
- Lack of appetite or sleep
- Depression, anxiety, bipolar disorder, psychosis and/or schizophrenia
- Trouble thinking, concentrating, or remembering
- Opportunistic infections
Most 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.
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.
If any substance use is mentioned in your medical notes, you should explain to your medical provider that you would still be unable to work even if you stopped using drugs or alcohol. For example, you may be using substances to deal with your symptoms or give yourself enough energy to go about your day. It is important to make sure the judge or hearing officer does not think that that substance abuse is your primary disability.
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 have no effect on 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 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 an American Indian born abroad.
It is important to know that, even if you are a 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 a LAPR, even if you have 40 quarters of qualified earnings.
Some states have adopted state 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.
ADAP provides US Food and Drug Administration (FDA)-approved HIV/AIDS 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 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 in evaluating qualification for ADAP.
Many states have been forced to implement waiting lists, eligibility restrictions, spending limits, and other methods to control costs. As of March 14, 2013, there were 65 people on ADAP waiting lists in three states. If you are unable to access medications through your state’s ADAP program, you may be able to access medications 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 the state. 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 will be available to most people who have income up to 133% of the federal poverty level (in 2013, this is $15,282 for an individual and $31,322 for a family of four). 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. Up until now, many people living with HIV who accessed medications through Medicare Part D fell into the “doughnut hole” where they had to pay 100% of the costs of their drugs until they paid $4,550 (in true-out-of-pocket costs, or “TrOOP”) and moved into catastrophic coverage. The good news is, if you hit the doughnut hole in 2013, you will receive a 52.5 percent discount on brand name drugs, and a 21 percent discount on generic drugs. These changes are the result of the Affordable Care Act, which will shrink the doughnut hole until it closes in 2020.
In addition, starting in January 2011, you can now 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.
Many states run Ryan White clinics or other programs to help people with no other access to care. These vary widely by state, and you should contact your local ASO to see what programs and clinics are available in your area.
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, an AIDS service organization, or a private attorney’s office
- 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