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 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.
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.