In the clamorous debate about health care reform,
one group with much at stake has been strangely absent: people with
disabilities. Yet they are the core of the population that most needs health
care and is most likely to be uninsured or underinsured. Oddly, while the
United States apppears on the verge of major changes in health care, the
conventional proposals do not coherently address the needs of the very groups
whose lives are most intertwined with the health care system.
Both health care reformers and groups representing people with disabilities
bear some responsibility for this inattention. On the one hand, many health
care reformers believe mistakenly that social Security already provides
adequately for people with disabilities and are wary of extending more coverage.
On the other hand, many disability advocates in recent decades have sought to
shift the framework of thinking about disability away from a medical model.
Preoccupied with the struggle for civil rights, they have not been closely
engaged in the debate over reform of the health care system. Indeed, in
defending the rights of people with disabilities, some have categorically
opposed any economic limit on services.
The significance of this development for health care reform was vividly
illustrated in the decision by the Bush administration in August 1992 to deny a
proposal from Oregon to ration medical care for welfare beneficiaries on
Medicaid. Even though Oregon's governor has a husband with paraplegia and a son
with autism, and the Governor claimed the support of the state chapter of the
Arc (formerly the Association for Retarded Citizens), national disability groups
vehemently condemned the proposal. They charged that the methods Oregon used to
rank the value of health care services discriminated against people with certain
disabilities by assessing their lives as less valuable than others, and that
Oregon's proposal therefore violated the Americans with Disabilities Act of 1990
and the Child Abuse ("Baby Doe") Amendments of 1984.
Whether the Americans with Disabilities Act was the real reason behind Bush's
decision is unclear. Disability rights may have been only a politically
convenient ground for President Bush to reject Oregon's waiver during an
election when he was charging that the Democrats favored health care rationing.
Nonetheless, the decision raised a new complication for efforts to achieve
universal coverage and control health costs: Are advocates of disability rights
and health care reform now going to find themselves on opposite sides of the
fence? Will disability groups be able to gain a middle ground that acknowledges
their constituency's needs but rejects the medical model? In a society that
views disability as a fate worse than death, policymakers who can't imagine life
as a wheelchair user aren't likely to support comprehensive health benefits for
people with disabilities. Never has it been more urgent for disability advocates
and health care reformers to understand each other's concerns.
Contrary to common belief, Medicare and Medicaid do not cover all persons with
disabilities. While 14.8 percent of the nondisabled population in 1984 had no
insurance, 15.6 percent of the working-age population with an activity-limiting
disability, or 2.1 million people, had none, according to a study by Robert
Griss of the World Institute on Disability and Stuart Hanson of Berkeley
Underinsurance is a particularly severe problem for people with disabilities.
While private health insurance plans typically cover acute care hospitalization
and physician expenses, they rarely cover long-term needs, such as medical
equipment or supplies, rehabilitation, or personal assistance services. For
example, in testimony provided to the National Council on Disability in June
1991, a young woman with multiple sclerosis told of spending $8,000 out of her
$20,000 annual salary on health-related needs, even though she has insurance
from a full-time job. Ironically, although the value of certain preventive
services, such as prenatal care, is well established, the value of preventive
services for people with disabilities is virtually ignored. Many living in
poverty must pay $10,000 for an electric wheelchair that will not only allow
mobility but prevent expensive skin sores.
Most people with disabilities do not use any more health care resources than
average once their initial treatment is completed. However, people with chronic,
severe disabilities do use more health care dollars on average than those
without disabilities. Recent data compiled for the Health Insurance Association
of America show that roughly 3 percent of the population--those with severe,
chronic disabilities or illnesses--generates over half of the nation's health
care costs. (For this article, people with disabilities refers to those with
significant impairments; while most chronic illnesses result in disability, not
all people with disabilities are ill. The two groups overlap but are not
synonymous.) A study conducted by Gerben DeJong, Andrew Batavia, and Robert
Griss showed that people whose disabilities are so severe they are unable to
carry out major life activities generate as much as six times the hospital costs
and three times the physician visits as those with no disabilities. These
categories represent large numbers of people. The National Center for Health
Statistics reports that in 1987 there were almost 6.1 million working-age people
with severe disabilities and another 26.7 million people with less severe
While people with disabilities have a large impact on the health care system,
and vice versa, current proposals do not even acknowledge their distinctive
needs. Some proposals do not provide universal access and would require high
users of care to bear a large portion of the costs at a time when they can least
afford it (disabled people are much poorer on average than nondisabled persons).
Most proposals do not provide the types of rehabilitation and chronic-care
benefits that people with disabilities need. Limits in benefit coverage for
people with mental disabilities are common. Even the Senate Democratic
leadership's plan includes no outpatient rehabilitation services, no durable
medical equipment, no prescription drugs, and limited mental health care. The
plan would replace Medicaid with another public plan that would provide even
fewer benefits. Ironically, while introducing the bill, Senator Edward M.
Kennedy extolled the health care treatment his son received when he fought bone
cancer, not realizing that under the bill that level of care would not
necessarily be available.
I raise these points not primarily to criticize the sponsors but to show that
even the staunchest supporters of people with disabilities sometimes do not
realize the limitations of current proposals. We desperately need to address
these issues now rather than later: far better to know in advance what proposals
can and cannot fix than to enact them and then be surprised that the problems
THE MOVEMENT'S AMBIVALENCE
Health system reform would seem to be a natural issue for disability groups.
For the past twenty years, however, the movement has attempted to transform the
concept of people with disabilities from passive patients requiring supervised
medical care to active consumers of social services who can make responsible
decisions affecting their own lives. Older disability organizations have added a
strong dose of civil rights advocacy to their traditional service orientation,
and newer organizations, such as the Disability Rights Education and Defense
Fund and the Mental Health Law Project, were founded explicitly to use legal
means to protect and expand the civil rights of people with disabilities. These
new organizations have cooperated with the older ones, but they have also
clashed when they felt the others were not pushing for change hard enough.
The disability movement's evolution has affected its ability to deal with
health care reform. First, the movement has a diverse constituency, with very
different service requirements, priorities, and methods of operation. Gaining
universal support for one plan of action is difficult. Second, as social norms
change, so do the goals of the movement. Their strategies for health care reform
must respond to these changing sentiments. Third, with the exception of Senator
Kennedy, the congressional supporters of disability rights are not the major
players in the health care debate. As a result, disability groups do not have
close allies in the key committees.
Disability organizations have become active on health reform only recently. In
the past two years, the National Council on Disability has conducted hearings;
the Consortium for Citizens with Disabilities, a coalition of national
disability organizations, has issued a position paper; and United Cerebral Palsy
has started a grass-roots mobilization effort. But these activities have
received scant press attention. When health policy is the topic of discussion,
the disability movement is generally not at the table.
The reasons for the movement's limited role are partly historical.
Traditionally, people with disabilities have been a largely unorganized,
disenfranchised group. Like other minorities, they have experienced
discrimination; unlike other minorities, they have been isolated from each
other, and the sheer physical difficulty of gathering together has impeded
The emergence of a disability rights movement has encouraged people to form
cohesive lobbying groups and generated services such as personal assistance and
accessible public transit that have enabled them to organize. But the disability
rights organizations have been busy working towards other goals. The fight to
pass the Americans with Disabilities Act of 1990 required virtually all the
resources disability organizations could muster.
Until not long ago, the prevailing trends in health care were actually
beneficial to people with disabilities. Improvements in medical technology and
rehabilitation methods led to increased survival rates and life expectancy.
Until the 1970s, most insurance plans were "community rated" (which
meant that employee groups including workers with disabilities paid no more than
others). The practices most harmful to persons with disabilities, such as
pre-existing condition exclusions and cancellation of policies in the event of
high costs, have become common only recently.
Even where problems with health care existed, many in the movement tended to
deny them. Until recently, most disability advocates saw any assertion that
people with disabilities have higher than average health costs as incorrect and
even heretical. To overcome negative stereotypes employers and others held about
people with disabilities, disability organizations emphasized positive
attributes. They sought to counteract fears of expensive accommodations,
unproductive workers, and high health care costs, insisting that none of this
was true of people with disabilities. Employees with disabilities, according to
this orthodoxy, would never miss work. They would gratefully stay in the same
job for the rest of their careers. And their disability would not cause
particularly high use of health care.
The reality was somewhere in the middle. At the 1987 meeting of the President's
Committee on Employment of People with Disabilities, a Reagan administration
official praised employees with disabilities as willing to come to work through
snowstorms when everyone else stayed home. A leading disability activist, Frank
Bowe, countered that real independence would come to people with disabilities
when they were allowed to be late or absent as much as nondisabled people.
The disability movement has worked so hard for so long to separate the issues
of health and disability that it has had to be extremely careful about how it
brought them back together. It is difficult to publicize some members' need for
significant benefits while not reviving the stereotype that all people with
disabilities are sick and should be viewed as patients.
Many organizations have made personal assistance services their top legislative
priority. One tenet of the disability rights movement has been to de-emphasize
the medical nature of a person's disability. Beginning in the 1970s, disability
activists such as Ed Roberts and Judy Heumann began to challenge the traditional
medical or home health model of providing personal assistance services in favor
of the independent living model. Under the medical model, personal assistance
services are viewed as health-related services provided to patients by aides
supervised by medical personnel. Under the independent living model, they are
social services provided to a usually healthy individual who can direct this
The Consortium for Citizens with Disabilities' position paper calls for the
inclusion of these services in health legislation. But again, the disability
lobby needs to develop their strategy carefully to avoid resurrecting harmful
stereotypes. The irony is that these services are cost-effective for health care
insurers when they prevent expensive health problems. But including the service
as a health benefit re-emphasizes their medical nature. In fact, while CCD's
health care position paper calls for personal assistance programs, its personal
assistance position paper stipulates that this program not be run by a medical
or health agency. So, disability organizations are caught between adhering to a
basic tenet of their movement--that these are social services that have little
to do with a medical condition--and support for including personal assistance
services in health coverage.
FINDING A NEW LANGUAGE
Once it becomes acceptable to acknowledge that some people with disabilities do
need additional resources, how should those who share their concerns justify
meeting these needs? Four basic arguments can be used:
- Charitable obligation: Society has a duty to take care of the
- Universal vulnerability: Any one of us could become disabled and
might need these benefits.
- Cost-effectiveness: Benefits pay for themselves in reduced
secondary disabilities or improved ability to work.
- Rights-based obligation: Access to health care is a civil right and
should not be denied based on need for care.
During the debate over the Americans with Disabilities Act, disability
organizations used all of these rationales except charitable obligation, which
they now regard as a degrading bid for pity. Especially in the initial stages of
the debate, advocates emphasized cost-effectiveness, maintaining that the law
would not create economic problems, since several studies had shown that people
with disabilities could be provided with accommodations inexpensively. They also
argued that these small costs would produce large benefits since people with
disabilities would become valued employees and customers. But opponents of the
legislation pointed out that it could require some expensive accommodations that
would not necessarily be cost-effective for the employer or owner of the public
Some disability advocates still emphasize cost-effectiveness, while others have
rejected that strategy, insisting that the additional costs are irrelevant. At
one meeting, an advocate suggested that disability leaders stop apologizing for
the cost of the Americans with Disability Act and recognize that it was
society's obligation to pay that price. It is inappropriate, in this view, to
put a price tag on a civil right.
What justification should the disability movement use in the debate about
health reform? Civil rights seems an obvious choice. Now that disability
advocates have made access to public telephones and dry cleaners a civil right,
it should be easier for them to make the same argument for health care.
However, it is clear just how expensive access to health care is. In the debate
over the Americans with Disabilities Act, the little data available pointed to
limited costs, and, in an unusual twist, the consumer advocates were more
sophisticated than their opponents. In health system reform, the stakes are
higher, more groups are competing for resources, the opponents are more
knowledgeable, and the data are more complex. Almost all sides accept the need
for universal access to health care, but none can simply assert that cost is
Cost-effectiveness arguments also have limitations. Many health care benefits
do prevent more costly health conditions and allow those with disabilities to
work and pay taxes. But leaning too heavily on these arguments begs the question
of how to justify services that neither prevent more costly illnesses nor raise
tax collections. Relying on cost-effectiveness is also dubious when benefits
improve quality of life in ways that are hard to measure--for instance, therapy
that improves someone's range of motion but does not affect the ability to work.
The strongest argument is enlightened self-interest based on universal
vulnerability. First, anyone can become disabled. Second, any of these "anyones"
would want the health care needed to recover as much as possible of the
lifestyle they had before. To stress the first part of the argument, advocates
use the acronym TAB--temporarily able-bodied--to describe everyone without a
disability. One reason that groups representing the elderly exert so much
influence is that virtually everyone can expect to join them. Not everyone will
become disabled, but mainstream voters' identification with disability concerns
should increase if they sense common risk. Former Reagan press secretary James
Brady's sudden entrance into the community of disabled persons--indeed, his
transformation into an activist--jolted more than a few public officials into
recognizing that disability is only as far as an unthinking step in front of a
The "it can't happen to me" mentality is what classically gives
young men their sense of immortality. And this sentiment pervades the rest of
society. However, the constant push to mainstream people with disabilities in
schools, jobs, and places of public accommodation is breaking down this barrier.
It offers some hope that the general public will feel a stronger stake in
policies that affect those with disabilities.
HANDLING THE "R" WORD
Virtually all reform proposals under discussion aim to increase access to a
standard of basic or mainstream health care. Some segments of the disability
community do need access to basic care. Still others--for example, those with
severe brain injuries--need large amounts of sophisticated and expensive care.
The disability community will need to consider how to present and represent this
diverse set of needs. The disability rights movement is no stranger to diverse
needs; the coalition that supported the Americans with Disabilities Act was
remarkable in its cohesiveness. For example, when conservatives pressured
disability groups to drop coverage of people with AIDS, the coalition held firm.
The disability movement's commitment to preventing restrictions on care has
shaken its usual political alliances, at least on two issues. As a disadvantaged
group in society, disability advocates have tended to support more liberal
positions. Nonetheless, some advocates have allied themselves with political
conservatives on abortion rights and on the question of allowing family members
to withhold treatment from severely disabled children and adults.
Some advocates are fearful that unbridled abortion rights will lead to parents
deciding to abort fetuses with severe or even minor disabilities. They feel that
prospective parents with no knowledge of how disabled people live with their
disability will assume that it would be better if their children were not born.
Furthermore, aborting a fetus sends a frightening message to people who have
grown up with that disability. A natural corollary to this position is
opposition to euthanasia and support for unlimited treatment for the most
severely disabled people--newborns, children, and adults. For people in the
disability community, it is a small step from deciding to turn off a respirator
for a comatose person to deciding to turn it off for someone with whom they work
These positions, however, run up against one of the most controversial but
inescapable issues in health system reform--allocation of limited resources.
Given the need to contain costs, serious proposals have to set priorities. That
imperative puts disability groups in a delicate position. They opposed the
Oregon plan largely because it explicitly denied care to people with some
disabilities (such as very low birth weight infants), even though Oregon would
have extended care to people with other disabilities who are now ineligible for
Medicaid. Instead, they argued, the government should reform the entire system
before rationing medical services. However, disability organizations have not
offered any substantial measures for containing costs, except uncontroversial
ideas about administrative streamlining.
It will not suffice simply to demand more services and to be uncompromising
about costs. In the current political climate, taking the position that we
should all get as much care as we desire for as long as we desire puts
disability organizations outside the realm of real political negotiation. The
only answer is to propose means to change both the financing and delivery system
to provide a reasonable level of health care at a price society will accept.
Disability groups need to learn to speak the language of cost containment,
managed competition, and organized systems of care--concepts that support full
allocation of health care resources to meet a person's needs while containing
overall health care costs.
Unfortunately, most current proposals use means of cost containment that are
unacceptable to people with disabilities. Many plans would make available a
basic benefits package including arbitrary limits on the number of physician
visits, inpatient hospital days, or lifetime or annual benefits. Some proposals
would extend systems of managed care that rely on poorly informed gatekeepers to
minimize access. And many would ask those facing high costs to bear more of the
burden to encourage them to minimize their purchases or at least to make
These routes all have profound flaws for people with disabilities. Arbitrary
limits do not permit distinctions between the hypochondriac and the person whose
chronic condition can be held in check by frequent, inexpensive primary care
visits. Some managed care plans that require authorization for costly services
may prevent some unnecessary hospitalization but also hinder access to needed
specialized care. Finally, people with disabilities, especially severe ones, are
also more likely to be poor and unemployed. It is unreasonable to require them
to expend more of their income on services when they have so little control over
their need for such services.
Rather than simply designing a basic benefit package that is somewhat more than
most people need in a given year but far less than a few need most of the time,
it makes more sense to design an organized delivery system that allocates care
according to what people need to become and remain healthy.
The best type of managed care delivery system uses humane and reasonable
methods to contain costs, such as working with health care providers, purchasers
of services, and people receiving services to find less expensive treatments
like home care. And rather than dictating courses of action, case managers act
as advocates for people seeking treatment, helping them identify and select
Of course, there will be disagreement about which treatments deserve funding.
However, these differences will be minimized and unpopular decisions easier to
accept if people with disabilities see that all other steps to reduce costs have
been taken and decision makers are considering their long-term health goals and
not simply short-term savings.
This is not a utopian notion. It is what some health maintenance organizations
have long been doing. Disability groups have strenuously opposed managed care
for good reason. But to participate in the debate, they need to learn about such
alternatives to ensure that they meet their needs better than unmanaged
If disability organizations can resolve these questions, there seem to be two
major roles they could play in the debate on health system reform. First,
Washington runs on paper. Disability groups must become much more active in the
debate by participating in meetings, commenting on proposals, and framing their
message to obtain media coverage.
Second, disability organizations can use their grass-roots constituencies to
support health care reform, as some organizations have started to do. Lawmakers
won't do anything until the public says it is ready to face the consequences of
Forty-three million Americans with disabilities and their families, teachers,
friends, and co-workers are a powerful lobbying force in the state capitols and
district offices. In lobbying for the Americans With Disabilities Act, many kept
discrimination diaries--records of the everyday instances of discrimination they
faced. Thousands of these were poured on the tables in committee hearings. The
disability groups that mobilized that kind of activity can generate similar
pressure on health care reform.
If disability groups can form a cohesive lobbying bloc on health system reform
and develop a strategy to influence other proposals, they could greatly
enlighten the health debate. Our health care system will be better if they do.
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