One of the most stressful problems faced by HIV+ people is trying to support themselves and cover their bills. Fortunately, there are benefits programs that can help.

Benefits may include monthly income, health insurance, food stamps, and medication programs. Benefits are so important because they can increase your access to housing, health care, medication, methadone maintenance (drug treatment), in-home support services, food, and vocational rehabilitation. If you are not working or working and earning a minimum amount of money, benefits may be available to you so that you can provide for these 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’s important and empowering to know that you may be entitled to benefits that can act as a safety net and help improve your quality of life if you are unable to work.

This benefit may be available through your county and is usually based on need. You have to have limited money in order to be eligible for county assistance. Counties may also require rent receipts, volunteer work, vocational 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 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 doctor 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 your 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. It is run through the state and county where you live, so rules vary by state. Single parents, pregnant women, 2-parent families in which one or both parents are disabled, and some other family situations might qualify you for AFDC. Income and resource limits, as well as time limits (usually 5 years) and work requirements, apply. SSI benefits may affect eligibility.

If you are an eligible single parent, you can 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 county 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. You can apply at your local welfare or Social Security office. It is intended for people who are working for low wages or part time, unemployed, receiving public benefits, elderly or disabled, or homeless.

There are two relevant programs, SSDI and 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 $2346 per month in 2010. 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 don’t qualify for SSDI. People who qualify for SSI may also receive assistance through Medicaid and food stamps. Some people get both SSI and SSDI if their SSDI is less than the SSI limit (the federal SSI rate is $674/month for an individual in 2010, 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 doctor and/or mental health practitioner on a regular basis and report all symptoms that may prevent you from working. Report symptoms of HIV and/or mental health you are experiencing such as:

• • Fatigue
  • Diarrhea
  • Yeast infections, bladder infections, and/or pelvic inflammatory disease
  • Neuropathy
  • Weight loss
  • Rashes
  • Fungal and/or bacterial infections
  • Night sweats
  • Lack of appetite or sleep
  • Depression, anxiety, bipolar disorder, psychosis and/or schizophrenia
  • Opportunistic infections due to AIDS

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 suffice. 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 to self-medicate your symptoms or allow 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 U.S. (including any temporary status). For SSI, you have to show that you were lawfully residing before August 22, 1996, granted asylum, refugee, or withholding of deportation status, are a Cuban or Haitian entrant, or are an American Indian born abroad.

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. 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 can pay for Food and Drug Administration (FDA)-approved 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 medications, 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. Other states look at income only, but not assets.

Many states have been forced to implement waiting lists (as of January 14, 2011, there are over 5,300 people on ADAP waiting lists in 10 states), eligibility restrictions, caps on spending, and other methods to control costs. 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 elect 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 2010, this is $14,404 for an individual and $29,327 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 (doctors, 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.

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 should see if you can also get Medicaid to pay for your Medicare premiums and costs that Medicare does not cover. Check to see if you can get ADAP if you are not able to get Medicaid.

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 symptoms of HIV, mental health, and/or other conditions, you are entitled to 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.
• Report all symptoms to your medical provider.
• Fight for what you deserve - the most income and health insurance that you and/or your family are allowed.
• See your medical provider as often as possible for the best medical treatment as well as support with your benefits claims.
• Keep documentation of symptoms, medications, and treatment to help when you have filed a claim.

Much of the above information was supplied by Positive Resource Center (www.positiveresource.org) and from materials prepared by Treatment Access Expansion Project (www.taepusa.org).