AIDS Victim Fights for Social Security

Question: As an AIDS victim I have come to the perhaps cynical conclusion that the Social Security Administration has a bias against--not merely me, but everyone suffering from the same illness.

In my case, my family applied for disability benefits in December, 1986, and the endless paper work--digging out of medical records, the procurement of waivers, reconsiderations and what-not--is still going on. I have had to go back to my doctors and hospitals numerous times to get additional copies of all my records simply because someone at Social Security has either lost them or has arbitrarily decided that more substantiation is needed.

Yesterday, my mailbox was jammed--mainly with 32 pieces of mail from Social Security alone. Several weeks ago, unexpectedly, I received a SS check for $301, and the accompanying letter said that I was fully entitled to the money and should feel free to cash it at once. Which I did. Two days later, I got a follow-up letter that said that I wasn’t entitled to it and that they hoped I hadn’t cashed it. If I had, the letter said, it would be necessary to reimburse the government, although a monthly repayment schedule could be worked out. In all of ’87 I received only $1,800 in disability benefits from SS.

Fortunately, my health, so far, has been such that I have been able to make all of these unnecessary trips, but my cynicism stems from the belief that Social Security deliberately stalls these disability claims knowing that, sooner or later, all of us will become too weak to do it, will give up, and our claims won’t have to be paid.--R.W.

Answer: Even in the best of health it can be traumatic to get caught up in the bureaucratic jungle and to have your case, apparently, drop through a crack. You and I have had several subsequent telephone conversations and, after numerous call-backs to Social Security and to other sources, a picture of what has happened to you has begun to emerge.

Disability Benefits

First, be assured that Social Security is not calloused, indifferent or inattentive to the disability benefit aspects of AIDS victims. Disability, according to SS definitions, is any illness or accident that prevents the applicant from engaging in his normal productive work. And there has never been any debate, according to Roy Aragon, a public affairs spokesman here for the agency, that AIDS is about as disabling as any disease can be.

“Like any disability,” Aragon continued, “there’s a five-month waiting period, and the disability has to be one that has to be expected to keep him from his job for at least a year.”

But, with these conditions met, any applicant is eligible for either straight Social Security Disability or Supplemental Security Income (SSI).

With straight disability, Aragon said, there is no “needs” test involved, and the average monthly payment, nationally, is $508.

SSI, however, kicks in when the applicant’s normal benefits would be low, or non-existent, and when his other income is less than $595 a month and his liquid assets are no more than $1,900 for a single person, or $2,850 for a married applicant. Ownership of a home or a car valued at less than $4,500 are exempted.

“If his normal monthly benefits, for instance, would come in at, say, $300,” Joe Giglio, another public affairs spokesman for SS said, “then SSI would kick in and make up the difference between that and $595.”

While the newness of AIDS caught the Social Security Administration a bit flat-footed, Aragon said, “we’ve had an ongoing educational program for our people on how such disability claims should be handled and expedited as much as possible. We’ve got a specialized unit in our Hollywood office, with one claims worker handling such cases exclusively.”

Your feeling that Social Security is dragging its heels in your case--and in the case of other AIDS sufferers--so that you will all give up and Social Security won’t have to pay your disability claims is also an understandable result of your bitterness, but it doesn’t have any basis, in fact, Giglio argued.

The money, as a result of your participation in Social Security, is rightfully yours, and the people administering the benefits have nothing to gain, personally, nor as a part of a government agency, in withholding it from you. Even if an AIDS patient should, indeed, die before actually receiving any of the benefits, Giglio added, his heirs will get the money.

Despite your natural frustration, Corby Paul, the case manager for the client-service division of AIDS Project Los Angeles (APLA)--which is funded through government grants, private philanthropy and fund-raising activities--generally gives relatively high marks to Social Security in its handling of AIDS benefits.

“They’re pretty good, and getting better in their expediting of benefits for AIDS victims,” she said. “So the real trouble isn’t with AIDS but with ARC (AIDS Related Complex) sufferers. There’s no real problem with Social Security once you’ve been diagnosed as an AIDS victim. It’s not being done deliberately, but it’s taking forever to get benefits for ARC victims, because Social Security simply doesn’t recognize ARC, itself, as a disabling disease.

Impossible to Function

“Actually,” she continued, “some of the sickest people I see aren’t AIDS victims at all, but are suffering from ARC. And while you can be functional with ARC for part of the time, it’s almost impossible to be functional 100% of the time. You’ll have diarrhea, or a sleeping problem or something. You simply can’t maintain an even energy level.

“And,” Paul continued, “there’s always this psychological stress hanging over you. On the one hand you’ve got your doctor telling you that you’re very ill, and with a possibly terminal disease at that. And then you’ve got Social Security telling you that you have to prove it.”

There’s been one significant breakthrough on the ARC front, however, Paul said. “The Centers for Disease Control in Atlanta has just lumped 12 diseases associated with ARC as being a form of AIDS, and the ability to make this sort of diagnosis will help a lot from a Social Security standpoint.”

But what about you, having been diagnosed, unquestionably, as having AIDS, but still having so much trouble with Social Security?

According to SSA’s examination of your case, and which you confirm as being a strong possibility, the trouble seems to be unrelated to your AIDS diagnosis but to events that occurred about seven years ago when, as a result of botched medication in a hospital, you lost the use of your right hand and the hearing in your left ear. You filed for, and received, disability benefits at that time--rightly so--but something apparently went awry with Social Security’s bookkeeping and you were overpaid. Or, at least, that Social Security’s perception of it. And this paper work foul-up is what’s still plaguing you today.

Be assured, however, that the local SSA office is giving your case special attention in trying to iron out this mess in which you find yourself. To ask you to be patient in the face of what you have been going through seems calloused. Unfortunately, though, that seems to be what it boils down to.