An Alliance at Risk: The Disability Movement and Health Care Reform

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.


DISABILITY MYTHS

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

Planning Associates.

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

disabilities.

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

persist.



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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

common action.

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

assistance.

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

    unfortunate.

  • 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

facility.

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

irrelevant.

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

bus.

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

everyday.

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

cost-conscious choices.

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

acceptable alternatives.

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

fee-for-service medicine.

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

change.

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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