NY Times ADAPT article

Thomas Cagle (nh-adapt@juno.com)
Tue, 8 Jun 1999 07:05:04 -0400


Health Benefits Bill Shows Power of the Disabled, 6/7/99

        By DAVID E. ROSENBAUM

        WASHINGTON -- Alana Theriault, who earns less than $1,000 a month
working part time as a benefits counselor, is back in school to     learn
computer programming.

        Her instructors say she has a special aptitude, and when she
        gets her certificate soon, she says, she expects to be offered a
        programming job paying as much as $50,000 a year.

        But unless federal law is changed, Ms. Theriault, who is 32,
lives
        in Berkeley, Calif., and is severely disabled, may not be able to
        take such a job and may have to forfeit the self-sufficiency she
        longs for.

        That is because if she earns more than a pittance, she will no
        longer be entitled to Medicaid, the federal-state medical
        insurance program for the indigent.

        Ms. Theriault has a condition called spinal muscular atrophy.
        She needs a rented respirator to breathe, which costs $2,900 a
        month; a personal attendant more than eight hours a day, which
        costs about $1,700 a month; a motorized wheelchair; and
        expensive medication. She could never get private medical
        insurance on her own, and without Medicaid, even with a good
        salary, she could never afford what it costs her to live.

        Her pathway to independence may be a bill the Senate could
        pass as early as this week. It would allow disabled people to
        retain health benefits under Medicaid and Medicare, which
        covers disabled people with financial assets that make them
        ineligible for Medicaid, even if they go to work and earn too
        much to be entitled to the federal disability benefits to which
the
        health insurance is tied.

        Ms. Theriault says the bill would change her life. "Here I am,"
        she said in an interview, "32 years old, trying to plan for my
        future, and as things stand now, I can't take a job. I can't buy
a
        house. I can't have any investments. I can't even really have a
        savings account."

        Advocates for disabled people say that the bill, which has 79
        co-sponsors in the Senate, would be the most important
        measure since the Americans With Disabilities Act was
        approved by Congress and signed by President Bush nine
        years ago. That legislation outlawed discrimination against the
        disabled.

        At the White House on Friday, President Clinton said the effect
        of the current law forcing people to choose between work on the
        one hand and Medicare or Medicaid on the other was to "deny
        opportunities to millions," and he urged Congress to approve
        the changes quickly.

        The broad bipartisan support for the legislation, which has also
        been approved by the House Commerce Committee without
        opposition, is a testament to the considerable and growing
        political influence of the disability-rights movement.

        Another example arose earlier this year when disabled people
        across the country mobilized to persuade state politicians to
        drop their support of Georgia's appeal to the Supreme Court of
        a federal appeals court ruling that the state must provide
        alternatives to institutionalization for the disabled.

        In the Georgia case, Olmstead vs. L.C., which the
        disability-rights movement equates with Brown vs. the Board of
        Education, two women whose disabilities included mental
        retardation and mental illness and who were confined to a large
        state institution, argued that the state had the obligation under
        the Americans With Disabilities Act to offer them placement in a
        less restrictive setting like a supervised group home.

        The federal appeals court in Atlanta ruled last year that the
state
        did have such an obligation, and Georgia appealed. At various
        times, 26 states filed briefs in the Supreme Court supporting
        Georgia's position. In the last few months, all but seven of
those
        states have withdrawn their support, a highly unusual turnabout.

        Here is a sampling of what led some of the other 19 states to
        change their minds: In Pennsylvania, protesters in five cities
        camped out in offices of the state attorney general. In Maryland,
        with demonstrations threatened, Gov. Parris N. Glendening
        ordered the state's lawyers to withdraw the state's support.

        In Mississippi, an aggressive telephone campaign led Gov. Kirk
        Fordice to abandon the case. In California and Nebraska,
        representatives of the Protection and Advocacy System,
        federally financed agencies in each state that act as advocates
        for the disabled, persuaded the politicians not to support
        Georgia's position.

        Career lawyers in the various state governments had filed the
        briefs on Georgia's side. The politicians overturned them, once
        they got wind of it.

        Barbara Allen, managing deputy attorney general in West
        Virginia, explained the situation in her state. "I can say with
        some understatement," she said, "that the attorney general went
        through the roof."

        One of the seven states that still back Georgia's side is Texas,
        and advocates for the disabled say they will hold this against
        Gov. George W. Bush in his race for the Republican presidential
        nomination.

        Explaining Bush's position, Attorney General John Cornyn said:
        "The Olmstead decision would take from the citizens of Texas
        the ability to decide how best to address the needs of the
        disabled and would give this power to the federal courts."

        Those were fighting words to many disabled people who argue
        that their cause is one of civil rights. "This is pretty much
what
        George Wallace said when he stood in the schoolhouse door,"
        said Bob Kafka, who lives in Austin, Texas, and represents
        Adapt, a national organization of the disabled.

        When the Supreme Court heard arguments on the case this
        spring, hundreds of demonstrators organized by Adapt came to
        Washington for a rally in front of the Court. But there is little
  the advocates for the disabled can do to affect the Supreme Court
        decision, and they are concentrating on legislation.

        The most ambitious measure they are pushing would require
        states to give disabled people the money that states pay
        nursing homes to care for them, so the people could use the
        money, if they chose, to pay for care outside the institutions.

        The Congressional Budget Office estimates that the bill would
        cost the government $10 billion to $20 billion a year. Advocates
        for the disabled challenge this cost projection, but it has been
        enough to scare off support.

        "There is no way Congress is going to approve another $20
        billion entitlement," said a senior Senate staff member who has
        worked on the legislation.

        Another reason for the lack of enthusiasm is the strong influence
        of lobbyists for nursing homes. The federal government spends
        about $50 billion a year for long-term institutional care for
        disabled people, and the nursing homes will not give up the
        money without a fight.

        For the 1998 congressional elections, nursing home interests
        donated nearly $3 million to candidates, parties and political
        committees, according to the Center for Responsive Politics, a
        nonpartisan institute that monitors campaign contributions.

        But the much more modest bill now before the Senate seems to
        face smooth sailing. Called the Work Incentives Act, it would
        encourage states to provide Medicaid to the working disabled,
        free in most cases and in return for a modest premium payment
        in the case of workers with substantial salaries like the one Ms.
        Theriault hopes to earn.

        It would also extend the number of years that disabled people
        who work could continue to receive Medicare benefits without
        paying premiums. The Congressional Budget Office estimated
        that the measure would cost the government $800 million over
        the next five years.

        Despite the president's position and strong bipartisan support
        in Congress, the measure has run into one snag after another.
        Most recently, for example, Sen. Phil Gramm, R-Texas, blocked
        the legislation just before the Memorial Day recess because it
        would offset the $800 million five-year price tag by adjusting
the
        way international businesses could credit the foreign taxes they
        pay against their U.S. income taxes.

        Gramm does not disapprove of the disability provisions or
        even the tax measure, his staff said. But he objects to any tax
        increase that is used to pay for more government spending.

        The consensus in the Senate was that a way would be found
        around Gramm's objection and that the measure would be
        passed soon after the Senate returns this week.

        No one knows how many people would take advantage of the
        new benefits if they became available. In Oregon, where
        disabled people have been allowed since February to retain
        Medicaid if they take jobs, only 75 people out of more than
        80,000 disabled people now on Medicaid have signed up so
        far.

        But for the few who have gone to work, the change has been a
        blessing. One of them, Scott Lay, 47, who has been a
        quadriplegic since he broke his neck in a diving accident 30
        years ago, was hired to coordinate the program for the state
        and is paid about $42,000 a year. It is essentially the first job
    he
has ever had.

        One of the most important elements of working is the
        self-esteem it provides, Lay said. "What I pay in federal and
        state taxes is almost as much as the government pays for my
        attendant care," he added. "So I'm paying back almost as much
        as I'm costing them."
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