From: mpmNS@fcolcc.hampshire.edu (mpmNS) Newsgroups: sci.med.aids,sci.med,misc.health.aids,soc.motss,bionet.molbio.hiv,sci.answers,soc.answers,misc.answers,news.answers Subject: Sci.Med.AIDS FAQ part 6 of 10 Followup-To: sci.med.aids Date: 22 Nov 1994 07:53:29 -0600 Organization: Hampshire College Lines: 562 Sender: sma@wubios.wustl.edu Approved: Yes: Jeff Rizzo ,phil@wubios.wustl.edu (J. Philip Miller) Message-ID: <18773@sci.med.aids> Reply-To: aids-faq@family.hampshire.edu NNTP-Posting-Host: wubios.wustl.edu Archive-name: aids-faq/part6 Posting-Frequency: monthly Last-modified: 10/8/94 Section 5. Social Services Available Q5.1 Guide to Social Security Benefits. Q5.2 What if you can't afford AZT? ------------------------------------------------------------------------ - Question 5.1. Guide to Social Security Benefits. U.S. Department of Health and Human Services Social Security Administration SSA Publication No. 05-10020 September 1993 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 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 or Supplemental Security Income programs. What's Inside 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 ***************************************************************** 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 Administrations's criteria for evaluating HIV infection are not linked to the Centers for Disease Control's (CDC) definition of AIDS. This is because the goals of the two agencies are different. 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. 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 than 40 credits and young 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? 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). 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 ability 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. 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 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 (See next two sections). 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 itself--that is, the presence of the virus--must 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 (PDI); 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). 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, care 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. In the section below (What You Can Do to Expedite the Processing of Your Claim), 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 (See section, "The General Definition of Disability" in Part 3). 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. 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 o 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 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's why we have a second Social Security representative monitor some incoming and outgoing telephone calls. Note from the AIDS Information Center: This document reflects changes in Social Security rules that took effect on July 2, 1993 and, also, how SSA evaluates claims based on HIV/AIDS. Copies of this publication, available in English and Spanish, can be ordered through Social Security's toll-free number, 1-800-772-1213. The publication numbers are 05-10020 (English) and 05-10920 (Spanish). For bulk quantities call the Public Information Distribution Center at (410) 965-0945. The fax number for ordering publications is (410) 965-0696. --------------------------------------------------------------- Question 5.2. What if you can't afford AZT? PATIENT ASSISTANCE PROGRAM AT BURROUGHS WELLCOME The Burroughs Wellcome Company has announced changes in its Patient Assistance Program (PAP) to make access to its drugs easier for disadvantaged patients. Physicians can now call a toll-free number, once they have determined that a patient is in need, to receive authorization to enroll the patient in the program. Upon authorization, the physician will give the patient a prescription benefit card from PCS Health Systems that can be used at any pharmacy. To qualify, patients must meet the following guidelines: o be a resident of the United States or its territories; o be financially disadvantaged; o have applied for and be awaiting reply from other prescription funding sources; or o not qualify for private or government assistance. The primary patient groups expected to participate are those using Burroughs Wellcome products for HIV and related infections, those with herpesvirus infections, transplant recipients, and those with cancer or congestive heart failure. Enrollment in the PAP must be initiated by a physician. To find out if an individual is eligible, patients should have their physicians call (800) 722-9294.