Disability Regulation Problems; Public Comment Deadline February 18

The Federal Government is adopting a new definition of HIV- related
disability which is expected to be effective for the next five years.
The regulations will affect access to Medicaid and Medicare programs, as
well as Social Security disability income under both SSI and SSDI.
Unfortunately there are serious problems in the proposed regulations.
You can help in making them better by writing to the address below
during the public comment period, which ends February 18.
(Additionally, organizations can sign on to a consensus letter being
circulated by the Washington-based AIDS Action Council by February 14;
for more information about signing on, call the AIDS Action Council at
202/293-2886 ext 18.)
The proposed new regulations, published in the Federal Register
December 18, 1991, pages 65702-65716, are in response to demands for
reform of the current system, in which the Social Security
Administration uses the AIDS definition of the U. S. Centers for Disease
Control (CDC) in determining disability. Those who meet this early CDC
AIDS definition are presumed to be disabled, and eligible for
Supplemental Security Income (SSI) if they also meet financial
requirements; others may be able to prove disability, but the process
can be difficult and time- consuming. Because the CDC definition has
been based on opportunistic infections common in men, women with
comparably severe illness were often excluded, and often died of HIV
disease before meeting the arbitrary definition of "AIDS. "
But the new ways to qualify for disability still fail to include
most of the conditions affecting women. Also, most of the new
conditions which are included require "functional" tests to prove
disability, in addition to the medical diagnosis. (Kaposi's sarcoma will
also require the new functional tests; the other parts of the existing
AIDS definition, such as pneumocystis, will continue to be accepted as
proof of disability. But the new rules will often require invasive,
expensive, or time-consuming tests to confirm these conditions, even
when practicing physicians, as well as the CDC, do not regard these
tests as necessary.)
Ironically, the new proposal does acknowledge the different
manifestations of AIDS in women -- but only as discussion about factors
which adjudicators should take into account in deciding whether somebody
qualifies as disabled. The problem is that almost none of these
conditions are included in the formal "listings" -- meaning that the
discussion will have little legal or practical effect.
Most of the publicity about the new rules concerns the fact that
one section lists having a T-helper count under 200, in addition to
meeting other requirements, as qualification for disability. The AIDS
Action Council agrees that a reasonable "functional" test of disability
may be appropriate in this case, instead of considering someone disabled
just because of a low T- helper count. The problem is that the
functional tests are far from reasonable -- and that they are applied
not only to persons claiming disability on the basis of blood counts,
but to major medical diagnoses as well (see list below).
Some of the problems are illustrated by the following list of
conditions, in section 14.08 M(2) of the proposed rules:
"Any one or more of the following, persistent and/or resistant to
therapy:
* pneumonia; * pulmonary tuberculosis; * bacterial or fungal sepsis; *
meningitis; * septic arthritis; * endocarditis; * peripheral neuropathy;
and * Kaposi's sarcoma."

One or more of these conditions is not enough to qualify for
disability unless the patient also meets at least two of four
"functional" tests in addition. Other conditions which also require the
functional tests (plus another medical condition in addition) include:
anemia (hematocrit less than or equal to 30 percent); granulocytopenia
(absolute neutrophil count less than or equal to 1,000); chronic or
recurrent herpes zoster; persistent, unresponsive diarrhea; and
persistent or recurrent radiographically documented sinusitis.
To meet the additional "functional" tests of disability, the
patient must have two or more of the following:
"(a) marked restriction of activities of daily living; or (b)
marked difficulties in maintaining social functioning; or (c) marked
difficulties in completing tasks in a timely manner due to deficiencies
in concentration or pace; or (d) repeated episodes of decompensation,
averaging three times a year or once every fourteen months, lasting two
or more weeks each, which cause the individual to deteriorate (which may
include loss of adaptive functioning)." (The "marked" standard is
defined to require an impairment "which seriously interferes with the
ability to function independently, appropriately, and effectively.")
It is clear that patients will become unemployable long before they
meet these tests for disability income (and, in most cases, for access
to Medicaid as well). Those who get their care at public clinics where
they do not have private physicians, and often have long waits for any
appointments, will be particularly disadvantaged -- especially since
even those conditions such as pneumocystis or toxoplasmosis which do not
require "functional" tests for disability determination cannot be
"presumptively" diagnosed but will now require laboratory or other tests
even in cases when physicians consider them medically unnecessary. Will
public clinics pay for additional medical tests just to meet disability
requirements?
According to the AIDS Action Council, "These HIV-related conditions
are the only physical conditions in all of the Secretary's adult
listings that require a functional test to qualify for disability."
Other problems with the new regulations include lack of
gynecological conditions, except for stage II cervical cancer and
recurrent vaginal candidiasis. Pelvic inflammatory disease is not
included.
What You Can Do
Send your written comments to: Commissioner of Social Security,
Department of Health and Human Services, P. O. Box 1585, Baltimore, MD
21203; they must arrive by February 18 to be counted.
Persons with persistent or drug-resistant tuberculosis, pneumonia,
or meningitis, for example, cannot be expected to work and should not
have go to through difficult and time-consuming additional steps to
prove that they are disabled. Tell the Social Security Administration
how requirements like those listed above will affect you or your
patients.
The proposed regulations are not all bad, however, and the current
system urgently needs reform. The regulations should be improved to
reflect medical practice and common sense before being adopted. They
should take into account the realities of medical care in public
clinics, and not be designed in ways that in fact will virtually exclude
most people who should qualify from receiving disability benefits and,
in consequence, medical care.
For more information, call the AIDS Action Council at 202/293-2886
ext 20; if you reach the voicemail, give your name and address and ask
them to send information about the proposed disability regulations.