ju st out T fobruary 2 1 , 1997 ▼ 19
SENTENCED TO LIFE
anoux’s situation is not unique. For people
whose health has improved because of pro*
tease inhibitor treatment, the decision as to
whether to go back to work opens up a whole
Pandora’s box: How will additional income
affect my disability payments, medical cover
age and other benefits I am receiving? Overall,
how much money will I have to make to receive
the same benefits I do on disability? If I’m feel
ing better but decide I’m not ready to go back to
work, can I lose my benefits anyway? If I go on
my new employer’s medical insurance, will
there be a “gap" in benefits? During the inter
view process, how will I explain not having
worked for the past few years without opening
myself up to HIV-related discrimination?
Disability status protects me from past bad debt,
so how will working change that?
HTV advocates who have been investigating
those questions have one overriding recommen
dation for people considering going back to
work: Don’t rush into anything. Sit down and
carefully examine all of the ramifications (with
a case manager, lawyer or accountant, if you
have them) because you may not be able to
undo some things once you’ve done them.
. “You don’t want any nasty surprises,” says
James Grayer, an attorney with the AIDS Legal
Project in Atlanta, who has put together a “laun
dry list” of items that could be affected by
returning to work, from veterans benefits to
food stamps to life insurance to aid for individ
uals provided under the Ryan White CARE Act.
Everybody’s situation is, of course, unique,
and should be individually evaluated. But there
are some broad guidelines people should keep in
mind before taking the plunge back into work:
* People who are receiving benefits from pri
vate long-term disability programs, rather than
the government, need to be particularly careful
because every policy has different provisions.
A typical private disability policy likely lim
its how much income can be earned before ben
efits cease. And unlike government disability
programs, private policies may not allow for
resumption of payments if a person finds that
they are again too ill to work.
Most policies also allow for periodic
reviews o f disabled status, which could,
depending on the policy, allow disability bene
fits to be withdrawn if the determination is
made that a person responding well to protease
inhibitors is now healthy enough to work. How
often those reviews are made, and the criteria
used to evaluate a person’s suitability for work,
depend on the policy.
• The two federally run disability programs,
SSI (the lower-income program that Lanoux is
on) and SSDI (for people who had more income
prior to becoming disabled) also require period
ic reviews of disabled status. As protease
inhibitors have started offering the promise (still
far from proven) of HIV disease as a manage
able, nondebilitating condition, fears have arisen
that the Social Security Administration, which
administers both programs, might start review
ing cases and forcing some people with HIV
who have improved off of the disability rolls.
“Those rumors are circulating. But we’ve
been assured by the folks at Social Security that
this is not what they're considering,” says Jeff
Monford, resource manager for the National
AIDS Fund, which has been meeting with
Social Security representatives as part of an
ongoing study of back-to-work issues.
Attempts to get an official response from
Social Security were unsuccessful. But the
agency’s track record does buttress die assessment
that it won’t try to pish people off of disability.
In the early years of the epidemic, an AIDS
diagnosis (based on T-cell count and incidence
of certain opportunistic infections) was consid
ered de facto disability. It didn’t matter that
someone might still be well enough to work. But
L
Social Security later added a new requirement
that, in addition to an AIDS diagnosis, a person
be impaired to the point where their daily living
activities were impacted. However, the agency
did not go back to specifically review cases of
people who were declared disabled under the
weaker definition. Monford says.
• When it comes to going back to work, there
are some stark differences for people on SSDI
and those on SSI.
On SSDI, people can work for up to nine
months within any five-year period, called a
“trial work period,” without losing any money
out of their check—no matter how much money
they make. Those nine months don’t have to be
consecutive, and they don’t count as a “service
month” if a person makes less than $200 during
the month.
After those nine months are up, and after a
three-month grace
period, SSDI recipi
ents won’t get pay
ments in months
where their income is
more than $500.
They will still get a
check in months
w here their income is
less than $500. This
protection lasts three
years, during which
they continue to
receive
Medicare
coverage.
There is a loop
hole here that can be
of particular benefit
to people on protease
inhibitors. Because
these drugs are nec
essary to be healthy
enough to work, the
Social
Security
Administration
allows their cost to
be deducted from
that $500 threshold,
in other words, if a
course of protease
cocktail treatment is
costing a person
$1,200 a month, he
or she could make up
to $1,699 a month
and still get their
SSDI check. And
because Medicare does not generally pay for
protease therapy, working might be an addition
al way for people on SSDI to gain access to the
drugs.
Boiled down, if people on SSDI go back to
work, they will still receive their disability
checks for at least nine months and will keep
Medicaid for 39 months. During that time, if
they get sick again and can’t work, they can
requalify for SSDI without a waiting period.
For people on SSI who decide to go back to
work, however, the situation is much cloudier.
There is no trial work period in the SSI pro
gram. Benefits are reduced from the first month,
roughly by about 50 cents for every dollar
earned. (As in SSDI, costs of work-related treat
ments, such as protease inhibitors, can be
deducted, but people on SSI whose drugs are
paid for by Medicaid usually incur only the
costs of a small co-payment) Make more than
$1,025 a month—$12,300 a year—and SSI pay
ments cease (this threshold may be higher in
states that add their own funds to the federal
benefit). If payments stop for more than 12
months, then SSI recipients who become too
sick to work would have to endure the whole
application process again.
Potentially more problematic is what losing
SSI payments may do to Medicaid coverage.
Unlike Medicare, which is a uniform federal
program, Medicaid is administered by the
states, which means there are 50 different sets
of rules. The party line out of Social Security is
that losing Medicaid is not automatic if SSI
payments stop. However, states have different
income thresholds for Medicaid, above which
the coverage is cut off.
Even with too much income, an SSI recipient
might be able to keep Medicaid if the person can
prove that he or she needs it to work and can’t
afford similar coverage on his or her own. But that
would require a case review by Social Security to
determine if the person is still disabled.
* For people who do decide to go back to
work, the federal health care reform law passed
last year could help them ‘get on their new
employer's insurance coverage.
Under this law, the
period of time a per
son was covered
under previous pri
vate
insurance.
Medicare, Medicaid
or COBRA (the
insurance extension
plan
a
worker
receives when leav
ing her or his job)
after June 1996 can
go toward qualifying
for pre-existing con
ditions. In other
words, if a new
employer’s medical
policy doesn't cover
expenses resulting
from a pre-existing
HIV diagnosis for a
period of time (now
limited to no more
than one year), the
period for which a
person has been pre
viously
insured
counts ticks off that
clock, unless there
has been more than a
two-month
break
where there was no
medical coverage of
any kind.
A few caveats: Only
time spent under
insurance coverage
after June 1996 counts toward meeting the pre
existing condition requirement. Also, this law is
being phased in gradually and will not apply to
all employers fully until 1998. Some small
employers may also be exempt.
* Under the Americans with Disabilities Act,
potential employers cannot refuse to hire people
because of disabilities, including HIV. But for
those who have been out of the work force on dis
ability, keeping that information private may be
tough because employers will naturally be curi
ous about any long-term gaps in an applicant’s
work history. And they can ask about those gaps.
“You don’t want to lie, because that could
come back to haunt you,” says AIDS Legal
Project’s Grayer. “But they cannot ask you to
disclose your HIV status.”
(At a recent forum on workplace issues at
which Grayer spoke, people in the audience
tossed out suggestions on how to deal with this
problem—applicants could say they were on a
“sabbatical” or doing “consulting” or “freelance
work,’’)
Under the ADA, if an applicant does decide
to disclose his cm * her HIV status, that informa
tion must be kept confidential. Employers must
also make reasonable accommodations to dis
abled workers, including allowing them to struc
ture their work schedule in light of the require
ments of their protease inhibitor drug regimen.
• People on disability who have credit card
or other debts that they can’t pay are protected
from action by creditors, who generally aren’t
allowed to garnish disability payments.
However, if these people go back to work, cred
itors can go after any income above minimum
wage. So people with a lot of debt may not end
up better off financially by going back to work.
• And, of course, the biggest caution when
considering whether to return to work is that no
one knows for sure how long protease inhibitors
might render someone able to function in the
workplace. Decisions made now, in the glowing
optimism of better health, could turn into
regrets down the road.
Lanoux’s experience illustrates the need for
caution. His health has improved on Crixivan—
but he only got Crixivan after failing to respond
to the two other protease inhibitors now on the
market. He has, for the time being, decided not
to go back to work, choosing instead to contin
ue his volunteer work at an AIDS agency.
But he’s uneasy about how long he might be
in limbo.
“Before, we knew what the inevitable was,”
he says. “And now, the inevitable is undefined.”
Part 4: “It’s Good
Bad News”
erched atop a hill, surrounded by peaceful
green space that stands in sharp relief to the
nearby bustle of downtown Los Angeles, the Chris
Brownlie House was a place for people with AIDS
to live, and it was a place for them to die.
Like numerous other AIDS service organiza
tions around the country, the AIDS Healthcare
Foundation, which was started in 1987 by a
handful of friends deeply affected by the dis
ease, saw the acute need for “end stage” care
facilities in Los Angeles. Those friends
drummed up enough money and support to turn
the former nurses’ dormitory into a 25-bed hos
pice, which opened in 1988. Over the years, it
provided shelter to about 1,800 people, includ
ing its namesake, Brownlie, a poet and activist
whose poem “AIDS” captured the spirit of what
these service organizations were striving to do
in gay communiries all over the country:
It is the fighting hack. It is the
building o f places to care fo r the Ih'ing
and the dying. It is courage, it is honor, it
is integrity. It is people joining forces in
a time o f great need. It is hope, it is shar
ing the burden...
Last September, though, Chris Brownlie
House closed. At the time, only about 10 of its
25 beds were filled.
“There was just a decreasing need for end-
stage health care,” says Ged Kensiea. the foun
dation's community relations director.
The house is now being refitted to accom
modate patients who need short-term acute
care, for example, those well enough to be dis
charged from the hospital but not well enough
to take care of themselves at home. A similar
shift is underway at two other hospices the
foundation operates, though a small number of
hospice beds will remain at each.
“I’m certain there will continue to be a need for
hospice care. But there is no question the demand
for our services has shifted," says Kensiea.
P
hrough all of the bleak years of the AIDS
plague, gay men and lesbians kept to the
hope and dream of the day when we would see
hospices close because they weren't needed
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