Most applicants are interested in two Social Security benefit programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

For both programs, applicants must prove that they have a disability which affects every aspect of daily life and which will not improve within 12 months. For SSDI, applicants must have worked at least 10 years, paying those FICA taxes out of their paychecks. For SSI, applicants must prove they are "low-income," which means there are no assets (such as a 401(k), an IRA, rental property, more than one car, jewelry and life insurance). There are many SSI eligibility rules based on income and assets. There are lots of exceptions to these rules. To ensure that prospective applicants are financially eligible as well as medically eligible, they are urged to speak with a counselor in AIDS Project Los Angeles' Benefits Department or at AIDS Service Center before filing for SSI.

Some applicants will qualify only for one of these programs. Other applicants will qualify for both.

The SSI/SSDI Appeal

If an applicant for Social Security benefits already has received a denial at the Reconsideration level (or if the applicant is part of the "Hearing Process Improvement" changes and the initial claim denial notice advises the applicant to file a Request for Hearing form), then the next step is to request a hearing in front of an ALJ.

Applicants have the right to legal representation during any stage of the Social Security benefits appeal process, but it is at the ALJ level that an attorney, or other representative can be the most critical element to winning an appeal. Keep in mind that while applicants can have a representative at the hearing who is not an attorney, they even can designate more than one representative (which normally might be the applicant's caregiver and an attorney).

Watch That Clock!

Applicants usually have only 65 calendar days to request the hearing (this includes an additional five days for mailing). The time is counted from the date stamped on the Notice of Decision the Applicant will have received in the mail from Social Security. If applicants try to file the forms after 65 days have passed, the Social Security office frequently will refuse to accept the forms, advising applicants that they must file a new application instead.

In rare cases, applicants will be allowed to complete a waiver, or a letter of "good cause" which explains why the appeal forms are late and which asks that Social Security accept the forms even though the 65 days have lapsed.

Applicants are urged to file all paperwork in person at the Social Security office. By law, applicants may file the appeal forms at any Social Security office -- there is no requirement that applicants file forms at the particular Social Security office where the file has been assigned. By filing the forms in person, applicants will receive a date-stamped receipt. This receipt is important because the Social Security Administration does lose paperwork. If applicants mail the appeal forms, and they are lost, they may be unable to prove that the forms were filed on time, and may be forced to start all over again, by filing a new application for benefits. By filing the appeal forms in person, applicants will get the date-stamped receipt -- and if the forms later are lost, applicants have proof that the appeal was filed on time.

How Do You Request a Hearing?

To request a hearing, applicants must complete the Request For Hearing By ALJ (Form HA-501-U5) and Claimant's Statement When Request For Hearing Is Filed And The Issue Is Disability (Form HA-4486). Both of these forms are available at your local Social Security office, from AIDS Project Los Angeles' Benefits Department, from the AIDS Service Center, or from HALSA.

Why Request the Hearing?

Frequently, applicants will choose to file a new application at the local Social Security office, rather than request a hearing in front of the ALJ. The purpose of requesting the hearing is to ask the ALJ to review the current application, to review the medical records and to listen to the applicant explain why she or he believes that she or he is disabled. The ALJ will consider all of the documents and verbal testimony and then decide not only if the applicant is disabled (under Social Security regulations) but also the date this disability became "permanent" (this is called the "onset date").

By asking for the hearing, applicants are asking the ALJ to agree that they were permanently disabled as of the onset date. The onset date often is the same as the application date, but if the ALJ agrees that the onset date predates the application, SSDI applicants may be entitled to additional SSDI benefits which actually are retroactive to the onset date (for as much as one year prior to the application date).

By filing a new application, applicants close the previous claim, and any possible benefits which might be awarded may be for a much shorter retroactive period. By filing a new application, applicants may lose possible retroactive benefits.

Hurry Up, Then Wait

Applicants who are HIV-positive or have AIDS are classified as TERI cases. These applicants suffer from a Terminal Illness and Social Security is required to process their application faster.

Applicants who have health insurance through the COBRA regulations also are required to have their application processed more rapidly. Because so many applicants request hearings, the Social Security's Office of Hearings and Appeals may take as long as a year to schedule a hearing. Use this waiting period to gather the medical records and to ensure that your file is complete and up to date.

Call the Office of Hearings and Appeals, make an appointment to review your file, and copy everything in it (this will save you and your representative a lot of time). Be sure that Social Security has your current mailing address.

Get Those Medical Records!

Applicants have the right to submit new evidence (which usually consists of more recent medical records). Some ALJs want to receive the records at least 10 days before the appeal hearing, but some ALJs will accept the records on the day of the hearing itself. According to Social Security, the major reason for denying an applicant's case is that there are insufficient medical records in the file to prove the applicant is disabled. Asking doctors for copies of the most recent records, including laboratory reports and psychological reports, remains crucial.

Applicants should review these records themselves. Is the provider writing down everything? Are all of the symptoms listed? Are the notes legible? Are the recent lab reports coming in? Is the doctor describing the applicant as "not compliant with the medications" when the applicant takes all of those meds religiously?

In order to clarify any errors in the records, or simply to provide an update of the applicant's medical condition, a letter from the treating doctor is sometimes necessary.

Keep in mind that applicants may not be permitted to get copies of their psychological or psychiatric records, Instead, applicants may need an authorized representative or Social Security to request those records from the therapist. For assistance in getting such psychological or psychiatric records, applicants should contact AIDS Project Los Angeles' Benefits Department or AIDS Service Center, for assistance.

Applicants then should make an appointment at Social Security's Office of Hearings and Appeals to copy the file. (Most OHA offices require applicants to call ahead for an appointment.) Are all of the recent medical records in the file? Take notes on which records are missing. Make arrangements either to have the supplemental copies sent straight to Social Security by the doctor/psychologist/psychiatrist, or to take the copies personally to make sure they are filed properly.

Social Security Doctors

Frequently, Social Security will send applicants a notice to be examined by one of their doctors or psychologists. By law, you can request to substitute your primary treating doctor or psychologist. AIDS Service Center or AIDS Project Los Angeles' Benefits Department staff members can advise applicants on the procedure to switch the appointment with a Social Security medical provider to an appointment with the applicant's personal medical provider.

If applicants plan to be examined by a Social Security doctor, they must keep this appointment and answer any questions truthfully. Even as the Social Security doctor takes notes during the examination, the applicant should take notes as well! Was the applicant asked to remove any clothing? Were the applicant's height, weight, blood pressure and pulse measured? Were the applicant's reflexes tested? Were any laboratory tests ordered? How long was the doctor in the room with the applicant? What questions, if any, did the doctor ask?

Do not be surprised if a five-minute appointment results in a 10-page evaluation of the disability claim, assessing the applicant as able to work. The ALJ hearing will be the opportunity to tell the ALJ about this examination and why, by comparison, the evaluations and notes from your HIV doctor are a better description of how you feel and how you physically are responding to the medication treatment.

Experts at the Hearing

The ALJ assigned to hear the case may request a medical expert or a vocational expert also to appear at the hearing. These experts will listen to the testimony by the applicant and by any witnesses. Usually, they will have reviewed the work history and the medical records in the applicant's Social Security file. They are there to tell the ALJ whether applicants are permanently disabled, or whether there is some other kind of job they could perform.

Judicial Discretion

Under the Social Security regulations, the ALJ is allowed a lot of discretion. This means that the ALJ can listen to any testimony and accept virtually any kind of evidence in the consideration of an applicant's case. Often, the ALJ may simply look at the applicant and make a general observation as to whether this person looks sick, even though the law does not allow the ALJ to make a decision regarding the applicant's disability based on the ALJ's own observations. (The ALJ is not a doctor, and does not have the medical training to conduct medical examinations.)

If the medical records are spotty, brief and lack detail, the ALJ may be unable to conclude, under Social Security regulations, that the applicant is disabled. As sick as the applicant will look, by law, there must be a medical record to document the disability and "back up" any ALJ conclusion that the applicant indeed is disabled.

Substance Abuse and the Disability Decision

In 1996, Congress changed the Social Security laws. There used to be hundreds of thousands of men and women receiving SSI or SSDI because their substance abuse addiction made it impossible for them to work, so they were considered medically disabled. In 1996, however, with the changes in the law, receiving SSI or SSDI is no longer possible if applicants are using any controlled substances.

The law allows the Social Security Administration to consider the effort to get, prepare or ingest the controlled substance as a sort of work activity. Since applicants cannot be approved for SSI or SSDI if they are working, this interpretation gives the ALJ a legal rationale for denying a claim for benefits.

If the applicant is no longer using controlled substances, it will be necessary to prove that she or he has completed a drug rehabilitation program, remains clean and sober, and has submitted to drug screens -- which were negative.

If the applicant relapses in substance abuse, the ALJ will have to consider whether the applicant still would be disabled, even if there had been no relapse -- whether the substance abuse is "a contributing factor material to the determination of disability." This "material factor" assessment also is done where the applicant still is using a controlled substance and can be the basis for denying an SSI/SSDI appeal, even if the effort to get, prepare and ingest the substances is not "substantial." The HIV/AIDS Legal Services Alliance (HALSA) does see cases where the applicant has a severe disability, as the result of HIV/AIDS, but the substance abuse relapse is the basis for the ALJ denial of SSI/SSDI benefits.

Notice of Decision

After the ALJ hears the case, preparing the written Notice of Decision can take weeks. Three outcomes are possible: Partially Favorable (the applicant is disabled, but the onset date is later than the date claimed), Fully Favorable (the applicant is disabled, and the disability began as of the applicant's onset date), or Unfavorable (the applicant is not disabled).

The reversal rate at this hearing level is over 60 percent for all appeals, and even higher for HIV/AIDS appeals. No one can make any guarantees about the likelihood of success for any applicant's case. It is better to assume you will have to argue the smallest detail, and be sure that all symptoms which are affecting your ability to lead a normal life are documented by your doctor and listed in the medical records.

OK, I'm Disabled -- Where's My Check?

The ALJ decides only whether applicants are disabled, and the onset date of that disability. Once this decision has been made, if part or all of the claim is for SSI, applicants will get a notice to go back to the local Social Security office for an appointment, in order to confirm any financial eligibility requirements (since SSI is the program which also is based on financial need). Applicants will be asked how they were living during this one- to two-year waiting period. Applicants will need to bring rent receipts and other proof of expenses and proof of any income, loans or gifts.

Regardless of whether the claim is for SSI, SSDI, or both, if the applicant has been receiving General Relief, Social Security will have a computer record and this money will be repaid directly to the County out of the applicant's retroactive benefits. The applicant's benefits will not be paid until GR has been repaid. There also will be deductions or offsets for any SDI or Workers' Compensation benefits which the applicant received. If the applicant is eligible for a Long Term Disability or other private insurance benefit, the applicant may be ineligible for SSI, and the SSDI benefits may be reduced for as long as those private benefits are received.

If an applicant retains a private attorney for representation during the appeal procedure, the attorney's fee of 25 percent (with a maximum fee allowance of $5,000) is deducted automatically from the applicant's retroactive SSDI benefits as well. Right now, attorneys' fees are not deducted automatically from retroactive SSI benefits, but this may change.

In the SSI case, the first Social Security ongoing benefits check normally is issued the month following the appointment at the local Social Security office. If the claim does not include SSI, the first ongoing benefits check normally is issued the month following a Notice of Benefits letter, which will be sent to the applicant from the Baltimore, Md., Social Security office. This letter outlines the benefits to be paid.

"Not Disabled?" Who're You Kidding?

If the applicant receives an Unfavorable decision from the ALJ, it is possible to appeal again. Anyone who receives an Unfavorable decision from the ALJ should file a new application for SSI/SSDI immediately. The right of appeal, at this level, does not prevent the applicant from filing the new application.

This time, the file, and any new medical records or other documentation the applicant wants to submit, will be sent to the Appeals Council in Falls Church, Va., or the applicant will have to file a lawsuit in federal court. The reversal rate at this level is less than 10 percent. Remember the part about the ALJ having judicial discretion? They are allowed a lot of leeway in reaching their decision, and for this reason, the Appeals Council rarely issues a reversal. For this reason, the federal court judge will not reverse the ALJ unless there has been some error of law, of legal procedure or some drastic change in the facts.

Cases which must be appealed to the Appeals Council, and which still are denied, can then be appealed again by filing the lawsuit in federal court, or the applicant can start over and file the new application for benefits.

Where Does the Lawyer Come In?

Applicants often consult with an attorney after receiving a reconsideration denial. If the medical records document severe symptoms of HIV/AIDS, HALSA provides free legal representation to persons with HIV or AIDS at these hearings.

Applicants may wish to hire a private attorney. Most attorneys agree to accept such Social Security appeal cases on a contingency. As mentioned already, the fee for such cases is 25 percent of the retroactive benefits award, with a maximum allowed of $5,000. For the name of an attorney who represents applicants in such cases, applicants can call the Lawyer's Referral Service at (213) 243-1525, (310) 451-5633 or (310) 553-4022. Applicants also can call the National Organization of Social Security Claimants' Representatives (NOSSCR) at (800) 431-2804 for a referral to a Los Angeles-area attorney.

Applicants can designate a representative who is not an attorney to assist during this appeal. If applicants have a long-term caregiver, or other trusted person the applicant wishes to appoint as the representative, this also is permitted.

The representative will help applicants gather medical records, review and copy the Social Security file, and often review questions the ALJ or the representative will ask during the hearing. The attorney may also prepare a written analysis of the facts of the applicant's case and the applicable law, to present to the ALJ during the hearing.

If you would like your Social Security case reviewed for possible representation, call AIDS Service Center at (626) 441-8495, AIDS Project Los Angeles' Benefits Department at (213) 201-1472. For an assessment of your disability case, call the HALSA intake line at (213) 21640.

Funded by the County of Los Angeles, Department of Health Services, Office of AIDS Programs and Policy.

Leslie Kline-CapelleLeslie Kline-Capelle is the Public Benefits Staff Attorney at the HIV & AIDS Legal Services Alliance. HALSA can be reached by calling (213) 201-1640.
Back to the September/October 2002 issue of Positive Living.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).