

               A Guide To Social Security and SSI

             Disability Benefits for People With HIV

                            Infection



                   U.S. Department of Health and Human Services
                                 Social Security Administration
                                   SSA Publication No. 05-10020
                                                 September 1993
                                                     ICN 454650
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ABOUT THIS BOOKLET 
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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 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 Supplemental
Security Income programs.
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WHAT'S INSIDE
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      PART 1--BACKGROUND INFORMATION 

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

      PART 2--WHAT BENEFITS ARE YOU ELIGIBLE FOR? 

      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?"

      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? 

      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.

    PART 5--HOW DO YOU FILE FOR DISABILITY BENEFITS? 

      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 

      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

      This section includes a brief overview of the kinds of
      benefits available from the Medicaid and Medicare
      programs.

    FOR MORE INFORMATION
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                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 Supplemental Security Income
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.
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           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.

SOCIAL SECURITY DISABILITY INSURANCE BENEFITS:
THE NONMEDICAL RULES OF ELIGIBILITY 
______________________________________________

Here are examples of how people qualify for SSDI:

o  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 4.  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 6 credits.

o  Disabled widows and widowers age 50 or older could be
   eligible for a disability benefit on the Social Security
   record of a deceased spouse.

o  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.)

o  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?
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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 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.

   In addition to rules about income, people on SSI must have
limited assets.  Generally, individuals with assets under
$2000, or couples with assets under $3000, 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).
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       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 how the condition affects their
ability to function--to do the things and behave in the ways
that other children of the same age normally would.

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.
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   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 are severe enough to prevent a child from
functioning in a manner similar to other children of the same
age.

   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.

   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. 

o  Pulmonary tuberculosis resistant to treatment
o  Kaposi's sarcoma
o  Pneumocystis carinii pneumonia (PCP)
o  Carcinoma of the cervix
o  Herpes Simplex
o  Hodgkin's disease and all lymphomas
o  HIV Wasting Syndrome
o  Syphilis and Neurosyphilis
o  Candidiasis
o  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.

   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, then they will look to see if your condition prevents you
from doing the work you normally do.  If it does not, then we 
look to see if it prevents you from doing any other type of
work you're suited for, based on your age, education, and
experience.  If it does, you may still be found disabled. 

   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 itselftthat is, the presence
of the virustmust be documented as well as any HIV-related
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.

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.  As with adults,
some children may not appear to have the conditions specified
in the guidelines, or may have listed conditions that are not
as severe as the guidelines require.  When this happens, a
functional assessment is made using criteria contained in the
lists.  A child may be  disabled if the HIV-related impairments
substantially reduce his/her ability to grow, develop, or
engage in activities similar to children of the same age.

   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).
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        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:

o  your Social Security number and birth certificate;

o  the Social Security numbers and birth certificates for
   family members signing up on your record; and

o  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 11, 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.

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
6 months of benefits pending a final decision on the claim. 
You will qualify for this immediate payment if: 

o  a medical source confirms that the HIV infection is severe
   enough to meet SSA's criteria;

o  you meet the other SSI nonmedical eligibility requirements;
   and

o  you are not doing "substantial" work .

   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 daily
activities, and then to provide all of this information to
Social Security when you file your claim.  Beginning below are
some guidelines you can follow:
o 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.

o  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.

o  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.

o  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.
______________________________________________________________

               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 9-month "trial work period" during
which earnings, no matter how much, will not affect benefit
payments; and a 3-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 3-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 Social
Security Can Help" (Publication No. 05-10095).  For a free
copy, just call or visit your nearest Social Security office.
______________________________________________________________

    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.

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:

o  inpatient and outpatient hospital care;
o  doctor's services;
o  diagnostic tests;
o  skilled nursing care;
o  home health visits;
o  hospice care; and
o  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).
______________________________________________________________

                      FOR MORE INFORMATION

For more information or to apply for benefits, call or visit
Social Security.  It's easiest to call Social Security's
toll-free telephone number.  The number is 1-800-772-1213.  You
can speak to a representative 7 a.m. to 7 p.m. each business
day.  The best times to call are early in the morning, early in
the evening, late in the week, and toward the end of the month.

   The Social Security Administration treats all call
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's why we have a
second Social Security representative monitor some incoming and
outgoing telephone calls.
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