Using the Social Service System

If you have been denied insurance, or if you have exceeded the limits of your insurance policy, you can turn to the social service system. The so­cial service system gives financial help to the elderly, to children, to the poor, and to the disabled.

A problem is that many people with HIV infection are severely dis­abled but do not have AIDS. Therefore, they are not eligible for many benefits that are based almost exclusively on this diagnosis.

To get into the social service system, begin by calling your city or county or state social service agencies. These agencies are listed under social services in the telephone book’s yellow or blue pages. Or start with a social worker at your hospital, clinic, church, or AIDS-advocacy agency.

Help with Income and Medical Bills

The social service system offers several kinds of help with income. What kind of help you can get, and how much, depends on several factors. If you have worked in the past but are disabled and cannot work now, and you need financial help, you qualify for disability income. Some people get disability income as part of their job benefits. If not, the same Social Security that insures your retirement also gives you disability income, called Social Security Disability Income, or SSDI. Whether you are qual­ified for SSDI depends on whether you have paid into Social Security for a minimum number of annual quarters. How much you can collect de­pends on how long you have worked and what your salary has been. Whether you are qualified for SSDI also depends on whether the Social Security Administration thinks you are disabled. The criterion for dis­ability is that the person is unable to do any work because of medical conditions that can be demonstrated by medical documentation.

If you are disabled, cannot work, and need financial help, you may also get Supplemental Security Income, called SSI. Whether you are qual­ified for SSI depends on your means, that is, on your income plus all your assets, everything you own. How much you can collect from SSI also de­pends on your means. In other words, the government says you are en­titled to a certain minimum income. SSI will add up whatever you get on your own, whatever your family can give you, and whatever you get from SSDI; then they will pay you the difference between that sum and the minimum income. If you have no income and no outside means of support, SSI will pay you the entire amount of the minimum income.

If you need financial help, you may qualify for general public assis­tance, called welfare or GPA. GPA, which is offered through the states, will differ from state to state. Some states do not offer GPA at all. Other states offer it if you need financial help and if you are disabled and can­not work. Some states also offer GPA if you need financial help and are disabled only temporarily; in this case, a person with early symptomatic HIV infection who is unable to work might be able to get financial help, though only for a limited time. And some states are replacing GPA with programs that offer loans. In any case, the amount of money you can collect from GPA is small and depends on your means.

If you have children and need financial help to care for them, you may qualify for Temporary Assistance to Needy Families, or TANF. Money from TANF can be used only for caring for your children. No­tice that to qualify for TANF, you need not be disabled. The amount of money you can collect from TANF will be related to the size of your fam­ily and your income. You can receive income from both SSI and SSDI at the same time. You can also receive income from both GPA and TANF at the same time. But you cannot receive income from both GPA and SSI at the same time.

If you qualify for SSI or GPA, you automatically qualify for help with medical bills. For details, see above, “Public Programs for Financ­ing Health Care.”

Some states have pharmaceuticals assistance programs for people who have low incomes and need help paying for drugs, but who do not qualify for Medicaid.

Navigating the Social Service System

Often people with HIV infection are unfamiliar with the large, bureau­cratic social service system. They say that getting through the system is a dehumanizing and irritating experience, that the system seems to be geared more toward frustrating than toward helping people. People oc­casionally become annoyed enough with the system that they give up and forgo their benefits.

Getting through the system requires preparation. In a single, sepa­rate file, keep documentation of the following: proof of identity, address, and date of birth (driver’s license, passport, birth certificate); Social Se­curity card; records of income, assets, medical expenses, living expenses, and dependents, anyone living with and sharing expenses with you, and a record of who is responsible for you. Take this file with you when go­ing to social services.

Keep another file of every person you talked to at social services, what date and time you talked to them, what you talked about, and what you understood the outcome of the talk to be. Find out the names of the supervisors. If someone sends you away to get more information, ask them to write down what information they want; then, when you bring the information, also bring along what they wrote. Do not try to keep your diagnosis a secret: some branches of social services will speed up the system if you have HIV infection. Some benefits apply only to those with HIV infection.

Take a friend with you, especially if you’re tired or ill. Some AIDS- advocacy agencies offer social workers, lawyers, counselors, or buddies who will go with you.

When to Stop Working

Often your qualification for income from social services comes down to a question of legal disability, which involves making a decision about when to stop working.

Some people quit gradually. They work half-days for a long time, or they arrange for a leave of absence.

The importance of the decision to quit work should not be under­estimated. It is one of the most difficult decisions people with HIV in­fection have to make. Our image of ourselves as competent and useful members of society depends to some extent on our jobs. When no one pays us to do a job, we worry that we are no longer worth anything at all. Caregivers often forget the extent to which people identify them­selves with their jobs. Caregivers worry about the people they’re caring for and want to protect them against stress and fatigue and accidents. Because of their worries, they sometimes urge the person with HIV in­fection to quit working before he or she is ready.

Some people welcome the chance to assess whether they really want to work. Some people decide to quit work and manage the transition well. These people see the decision not as whether to quit but as how to change. They believe that life is the process of developing one new iden­tity after another. They want to try a new identity—to be a writer or traveler or teacher or artist or builder or musician or inventor. Many do volunteer work. Many others become AIDS activists (see chapter 11).