Social

Security

A Guide To

Social Security

And SSI Disability

Benefits For People

With HIV Infection
About This Booklet 

Social Security can provide a lifeline of support to people

with HIV infection. That lifeline comes in the form of

monthly Social Security disability benefits and Supplemental

Security Income (SSI) payments, Medicare and Medicaid coverage and a variety of other services available to people who

receive disability benefits from Social Security.

If you are disabled because of HIV infection, this booklet

will help you understand the kinds of disability benefits 

you might be eligible for from the Social Security or SSI 

programs.
What’s Inside

Page

Part 1—Background Information.................... 4

The first section provides some brief background information about HIV infection and Social Security.

Part 2—What Benefits Are You 

Eligible For? ................................................... 4

This section explains the nonmedical rules and

eligibility factors for Social Security Disability

Insurance benefits and Supplemental Security

Income Disability payments.

Part 3—How Does Social 

Security Define “Disability?” ........................ 7

This section explains Social Security’s definition of

“disability” and how it relates to claimants with HIV

infection.

Part 4—How Does Social 

Security Evaluate Your Disability?.................. 8 

This section explains how Social Security evaluates

disability claims involving HIV diseases in general.

And it includes up-to-date information about the way

we process claims, especially those involving women

and children with HIV infection.

2
Part 5—How Do You File For 

Disability Benefits? ........................................ 12

This section includes information about when and

how to apply for disability, what steps we take to ensure that your claim is processed quickly and

accurately, and most important, what things you can

do to help the process along. Also included is information about situations when we can presume a person

is disabled and make immediate payments.

Part 6—Helping You Return To Work .............15

This section provides an overview of special rules designed to help you return to work.

Part 7––What You Need To Know 

About Medicaid And Medicare .........................16

This section includes a brief overview of the kinds of

benefits available from the Medicaid and Medicare programs.

For More Information .....................................18

3
Part 1—Background Information

Acquired immunodeficiency syndrome (AIDS) is characterized by the inability of the body’s natural immunity to

fight infection. It is caused by a retrovirus known as human

immunodeficiency virus, or HIV. Generally speaking, people

with HIV infection fall into two broad categories:

1) those with symptomatic HIV infection, including

AIDS; and

2) those with HIV infection but no symptoms.

Although thousands of people with HIV infection are

receiving Social Security or SSI disability benefits, we believe

there may be others who might be eligible for these benefits.

Social Security is committed to helping all men, women and

children with HIV infection learn more about the disability

programs we administer. And if you qualify for benefits, we

are just as committed to ensuring that you receive them as

soon as possible.

You should also be aware that the Social Security Administration’s criteria for evaluating HIV infection are not linked

to the Center for Disease Control’s (CDC) definition of AIDS.

This is because the goals of the two agencies are different.

The CDC defines AIDS primarily for surveillance purposes,

not for the evaluation of disability.

Part 2—What Benefits 

Are You Eligible For?

We pay disability benefits under two programs: Social

Security Disability Insurance, sometimes referred to as SSDI,

and Supplemental Security Income, often called SSI. The

medical requirements are the same for both programs, and

your disability is determined by the same process. However,

there are major differences in the nonmedical factors, which

are explained in the next two sections.

4
Social Security Disability Insurance Benefits: 

The Nonmedical Rules of Eligibility 

Here are examples of how people qualify for SSDI:

• Most people qualify for Social Security disability by

working, paying Social Security taxes, and in turn,

earning “credits” toward eventual benefits. The maximum

number of credits you can earn each year is four. The

number of credits you need to qualify for disability

depends on your age when you become disabled. Nobody

needs more then 40 credits and younger people can

qualify with as few as six credits.

• Disabled widows and widowers age 50 or older could be

eligible for a disability benefit on the Social Security

record of a deceased spouse.

• Disabled children age 18 or older could be eligible for

dependent’s benefits on the Social Security record of a

parent who is getting retirement or disability benefits or

on the record of a parent who has died. (The disability

must have started before age 22.)

• Children under the age of 18 qualify for dependents

benefits on the record of a parent who is getting

retirement or disability benefits or on the record of a

parent who has died, merely because they are under 

age 18.

For more information about Social Security disability benefits in general, ask Social Security for a copy of the booklet

Disability (Publication No. 05-10029).

How Much Will Your Benefits Be?

How much your Social Security benefit will be depends on

your earnings history. Generally, higher earnings translate

into higher Social Security benefits. You can find out how

much you will get by contacting Social Security and asking

5
for an estimate of your benefits. We’ll give you a form you

can use to send for a free statement that contains a record of

your earnings and an estimate of your benefits.

In addition to checking your benefit, we encourage you to

use this statement to verify that your earnings have been

properly recorded in our files. It’s important that you do this

because any missing or unreported wages could lower your

Social Security benefit or even prevent you from qualifying

for disability benefits. If you find a problem, contact your 

local Social Security office right away, show them proof of

your actual wages, and the record will be corrected. This can

be particularly important for people who have tested positive

for HIV but have not developed symptoms, so that any 

potential benefits will not be delayed by wage correction

efforts.

Disabled widows, widowers and children eligible for benefits as a dependent on a spouse’s or parent’s Social Security

record receive an amount that is a percentage of the worker’s

Social Security benefit.

Supplemental Security Income: 

The Nonmedical Rules of Eligibility 

SSI is a program that pays monthly benefits to people with

low incomes and limited assets who are 65 or older, or blind

or disabled.

As its name implies, Supplemental Security Income 

supplements a person’s income up to a certain level that can

go up every year based on cost-of-living adjustments. The

level varies from one state to another, so check with your 

local Social Security office to find out more about SSI benefit

levels in your state.

We don’t count all the income you have when we figure

out if you qualify for SSI. And if you work, there are special

rules we use for counting your wages. Again, check with

Social Security to find out if you can get SSI.

6
In addition to rules about income, people on SSI must

have limited assets. Generally, individuals with assets under

$2,000, or couples with assets under $3,000, can qualify for

SSI. However, when we figure your assets, we don’t count

such items as your home, your car (unless it’s an expensive

one) and most of your personal belongings.

Your Social Security office can tell you more about 

the income and asset limits. For more general information,

ask for a copy of the booklet SSI (Publication No. 05-11000).

Part 3—How Does Social 

Security Define Disability?

In this section, we’ll explain the criteria you must meet in 

order to be considered “disabled.” First, we’ll explain in general terms how Social Security defines and determines disability. Then we’ll discuss how it applies to people with HIV

infection.

The General Definition Of Disability 

Disability under Social Security is based on your inability to

work because of a medical condition. You will be considered

disabled if you are unable to do any kind of “substantial”

work for which you are suited. (Usually, monthly earnings of

$500 or more are considered substantial.) Your inability to

work must be expected to last at least a year. Or, the condition that keeps you from working must be so severe that you

are not expected to live.

For children, we decide if the condition results in marked

and severe functional limitations. The condition must have

lasted or be expected to last for at least 12 months or be so 

severe that the child is not expected to live.

7
How This Definition Of Disability 

Applies To People With HIV Infection 

A person with symptomatic HIV infection is often severely

limited in his or her ability to work. In other words, if the 

evidence shows that you have symptomatic HIV infection

that severely limits your ability to work, and if you meet the

other eligibility factors, the chances are very good that you

will be able to receive Social Security or SSI benefits.

On the other hand, some people with HIV infection may be

less impaired and able to work, so they may not be eligible

for disability.

Part 4—How Does Social Security

Evaluate Your Disability? 

Social Security works with an agency in each state, usually

called a Disability Determination Service (DDS), to evaluate

disability claims. At the DDS, a disability evaluation specialist

and a doctor follow a step-by-step process that applies to 

all disability claims, thus assuring a consistent national 

approach to evaluating disability.

First, the DDS specialists decide whether your impairment

is “severe.” This simply means the evidence must show that

your disability interferes with your ability to work.

The next step in the process is deciding whether the disability is included in a list of impairments. This list describes,

for each of the major body systems, impairments that are considered severe enough to prevent an adult from doing any

substantial work, or in the case of children under the age of

18, impairments that result in marked and severe functional

limitations.

8
Recently we published a list of impairments for HIV

infections. In this list, we have included many conditions

associated with symptomatic HIV infection, including some

that specifically apply to women and children with HIV infection. (See Page 11.)

Some of the HIV-related conditions included in the HIV

list of impairments are shown below. The level of severity

that an impairment must meet to be found disabling are also

specified in the regulations. 

• Pulmonary tuberculosis resistant to treatment

• Kaposi’s sarcoma

• Pneumocystis carinii pneumonia (PCP)

• Carcinoma of the cervix

• Herpes Simplex

• Hodgkin’s disease and all lymphomas

• HIV Wasting Syndrome

• Syphilis and Neurosyphilis

• Candidiasis

• Histoplasmosis

Remember: these are just a few examples. You can see a

complete list of HIV-related impairments at any Social Security office. The complete list will also include the findings

necessary for listed impairments to be considered disabling

by Social Security. 

If you have symptoms of HIV infection that are not specifically included in (or equal in severity to) the impairments on

our list, then DDS disability specialists will look at how 

frequently these conditions occur and how they affect your

ability to function. 

The DDS team will evaluate how well you function in three

general areas: daily activities; social functioning; and the ability to complete tasks in a timely manner, which requires the

ability to maintain concentration, persistence and pace.

9
If you have “marked limitations” in any one of these functional areas and repeated manifestations of HIV meeting the

criteria in the listings, you may be found disabled. A marked

limitation is one that seriously interferes with your ability to

function independently, appropriately and effectively. It does

not mean that you must be confined to bed, hospitalized or

in a nursing home. 

If the specialists decide that you are not disabled at this

point because you do not have a condition that exactly

matches or is equal in severity to one on our list and you are

an adult, then they will look to see if your condition prevents

you from doing the work you normally do. If it does not, your

claim will be denied. If it does, your claim will be considered

further. We then look to see if you can do any other type of

work based on your age, education, past work experience and

transferable skills. If you cannot do any other kind of work,

your claim will be approved. If you can, your claim will be 

denied.

Remember, at all steps in the process, your impairment

must be documented. Documentation includes medical

records from your doctors, as well as laboratory test results,

X-ray reports etc. The HIV infection itself—that is, the presence of the virus—must be documented as well as any HIVrelated manifestations. At all steps in the process it is

important that we have evidence of signs, symptoms and laboratory findings associated with HIV infection, as well as information on how well you are able to function day-to-day. The

signs and symptoms may include: repeated infections;

fevers/night sweats; enlarged lymph nodes, liver or spleen;

lower energy or generalized weakness; dyspnea on exertion;

persistent cough; depression/anxiety; headache; anorexia;

nausea and vomiting; and side effects of medication and/or

treatment, as well as how your treatment affects your daily

activities.

10
Evaluation Of HIV Infection In Women 

Statistics show that there is an increasing number of women

with HIV diseases. Social Security’s guidelines for the immune system recognize that HIV infection can show up differently in women than in men. In addition to following the

criteria outlined in the previous section, DDS disability

evaluators consider specific criteria for diseases common —

in women. These include: vulvovaginal candidiasis (yeast 

infection); genital herpes; pelvic inflammatory disease (PID);

invasive cervical cancer; genital ulcerative disease; and condyloma (genital warts caused by the human papillomavirus).

Again, the level of severity necessary for these impairments

to be considered disabling is included in the list of impairments.

Evaluation Of HIV Infection In Children 

We also have separate listings for children with HIV

infection. These guidelines recognize the fact that the course

of the disease in children can differ from adults. In order to

be found disabled, a child must have a condition that exactly

matches or is equal in severity to either the adult or childhood HIV listing or another impairment found in the list of

impairments.

For more information about disability benefits for children, ask Social Security for a copy of the booklet Social

Security And SSI Benefits For Children With Disabilities

(Publication No. 05-10026).

11
Part 5—How Do You File 

For Disability Benefits?

You apply for Social Security and SSI disability benefits by

calling or visiting any Social Security office. All Social Security files are kept strictly confidential. It would help if you

have certain documents with you when you apply. But don’t

delay filing because you don’t have all the information you

need. We’ll help you get the rest of it after you sign up. The

information you’ll need may include:

• your Social Security number and birth certificate;

• the Social Security numbers and birth certificates for

family members signing up on your record; and

• a copy of your most recent W-2 form (or your tax return

if you’re self-employed).

If you’re signing up for SSI, you will need to provide records that show that your income and assets are below the

SSI limits. This might include such things as bank statements, rent receipts, car registration, etc.

You’ll also need to give us information about how your condition affects your daily activities, the names and addresses of

your doctors and clinics where you’ve received treatment and

a summary of the kind of work you’ve done in the last 15

years. If you have medical evidence such as reports of blood

tests, laboratory work or a physical, it would be helpful if you

brought them with you. Beginning on Page 13, we give you

some guidelines for providing us with medical and vocational

information that will help speed up your claim. But first we

want you to know what Social Security does to make the

process work as smoothly as possible.

12
What Steps Has Social Security 

Taken To Ensure Prompt Processing 

And Payment Of Disability Benefits? 

All HIV infection claims are given prompt attention and priority handling. For many people applying for SSI with a medical diagnosis of symptomatic HIV infection, the law allows us

to presume they are disabled. This permits us to pay up to six

months of benefits pending a final decision on the claim. You

will qualify for this immediate payment if: 

• a medical source confirms that the HIV infection is severe

enough to meet SSA’s criteria;

• you meet the other SSI nonmedical eligibility

requirements; and

• you are not doing “substantial” work (see Page 7).

If you have symptomatic HIV infection but the local Social

Security office cannot provide immediate payment, a disability evaluation specialist at the DDS may still make a “presumptive” disability decision at any point in the process

where the evidence suggests a high likelihood that your

claim will be approved. (If we later decide you are not disabled, you will not have to pay back the money you received.)

Special arrangements have been made with a number of

AIDS service organizations, advocacy groups and medical

facilities to help us get the evidence we need to streamline

the claims process. And many DDS’s have Medical/Professional Relations Officers who work directly with these organizations to make this process work smoothly.

What You Can Do To Expedite 

The Processing Of Your Claim 

You can play an active and important role in ensuring that

your claim is processed accurately and quickly. The best advice we can give you is to keep thorough records that document the symptoms of your illness and how it affects your

13
daily activities, and then to provide all of this information to

Social Security when you file your claim. Beginning on 

Page 16 are some guidelines you can follow:

• Document the symptoms of your illness early and often

Use a calendar to jot down brief notes about how you feel

on each day. Record any of your usual activities you could

not do on any given day. Be specific. And don’t forget to

include any psychological or mental problems.

• Help your doctor help you

Not all doctors may be aware of all the kinds of

information we need to document your disability. Ask

your doctor or other health care professional to track the

course of your symptoms in detail over time and to keep a

thorough record of any evidence of fatigue, depression,

forgetfulness, dizziness and other hard-to-document

symptoms.

• Keep records of how your illness affected you on the job

If you were working, but lost your job because of your

illness, make notes that describe what it is about your

condition that forced you to stop working.

• Give us copies of all these records when you file 

In addition to these records, be sure to list the names,

addresses and phone numbers of all the doctors, clinics

and hospitals you have been to since your illness began.

Include your patient or treatment identification number

if you know it. Also include the names, addresses and

phone numbers of any other people who have

information about your illness.

14
Part 6—Helping You Return To Work

If you return to work, Social Security has a number of special

rules, called “work incentives,” that provide cash benefits and

continued Medicare or Medicaid coverage while you work.

They are particularly important to people with HIV disease

who, because of the recurrent nature of HIV-related illnesses,

may be able to return to work following periods of disability.

The rules are different for Social Security and SSI beneficiaries. For people getting Social Security disability benefits,

they include a nine-month “trial work period” during which

earnings, no matter how much, will not affect benefit payments; and a three-year guarantee that, if benefits have

stopped because a person remains employed after the trial

work period, a Social Security check will be paid for any

month earnings are below the “substantial” level (generally

$500). In addition, Medicare coverage extends through the

three-year timeframe after the trial work period, even if your

earnings are substantial.

SSI work incentives include continuation of Medicaid coverage even if earnings are too high for SSI payments to be

made, help with setting up a “plan to achieve self-support”

(PASS), and special consideration for pay received in a sheltered workshop so that SSI benefits may continue even

though the earnings might normally prevent payments.

These and other work incentives are explained in detail in

the publication Working While Disabled...How We Can Help

(Publication No. 05-10095). For a free copy, just call or visit

your nearest Social Security office.

15
Part 7—What You Need To Know

About Medicaid and Medicare

Medicaid and Medicare are our country’s two major

government-run health insurance programs. Generally, 

people on SSI and other people with low incomes qualify for

Medicaid, while Medicare coverage is earned by working in

jobs covered by Social Security, for a railroad or for the 

federal government. Many people qualify for both Medicare

and Medicaid.

Medicaid Coverage 

In most states, Social Security’s decision that you are eligible

for SSI also makes you eligible for Medicaid coverage. (Check

with your local Social Security or Medicaid office to verify the

requirements in your state.)

State Medicaid programs are required to cover certain services, including inpatient and outpatient hospital care and physician services. States have the option to include other

services, such as intermediate care, hospice care, private duty

nursing and prescribed drugs.

For more information about Medicaid, contact your local

Medicaid agency.

16
Medicare Coverage 

If you get Social Security disability, you will qualify for 

Medicare coverage 24 months after the month you became

entitled to those benefits. Medicare helps pay for:

• inpatient and outpatient hospital care;

• doctor’s services;

• diagnostic tests;

• skilled nursing care;

• home health visits;

• hospice care; and

• other medical services.

For more information about Medicare, call or visit your 

local Social Security office to ask for the booklet Medicare

(Publication No. 05-10043).

Help For Low-Income Medicare Beneficiaries

If you get Medicare and have low income and few resources,

your state may pay your Medicare premiums and, in some

cases, other “out-of-pocket” Medicare expenses such as deductibles and coinsurance. Only your state can decide if you

qualify. To find out if you do, contact your state or local welfare office or Medicaid agency. For more general information

about the program, contact Social Security and ask for the

leaflet Medicare Savings For Qualified Beneficiaries (HCFA

Publication No. 02184).

17
For More Information

You can get recorded information about Social Security 

coverage 24 hours a day, including weekends and holidays, by

calling Social Security’s toll-free number, 1-800-772-1213.

You can speak to a service representative between the hours

of 7 a.m. and 7 p.m. on business days. Our lines are busiest

early in the week and early in the month so, if your business

can wait, it’s best to call at other times. Whenever you call,

have your Social Security number handy. 

People who are deaf or hard of hearing may call our 

toll-free “TTY” number, 1-800-325-0778, between 7 a.m. and

7 p.m. on business days.

Social Security information also is available to users of the

Internet. Type http://www.ssa.gov to access Social Security 

information.

The Social Security Administration treats all calls confidentially—whether they’re made to our toll-free numbers or to

one of our local offices. We also want to ensure that you receive accurate and courteous service. That is why we have a

second Social Security representative monitor some incoming and outgoing telephone calls.

18
Notes

19
Social Security Administration

SSA Publication No. 05-10020

May 1997 (Recycle prior editions)

ICN 454650

Unit of Issue—HD (one hundred)