Marianne L. Engelman Lado
Excerpted from: Marianne L. Engelman Lado, Breaking the Barriers of Access to Health Care: A Discussion of the Role of Civil Rights Litigation and the Relationship Between Burdens of Proof and the Experience of Denial, 60 Brooklyn Law Review 239, 252-273 (1994)(109 Footnotes Omitted)
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[W]hat roles can civil rights advocates play on behalf of their clients to address inequalities in the provision of health services? Clearly, the time has arrived for an overhaul of the health care system. During the legislative process, Congress must address issues of access, including how the President's Health Security Act and other legislative proposals deal with the inadequate number of health professionals and facilities that provide care in poor areas, and what protection each measure offers against racial discrimination. Advocates must find ways of helping their clients play a role in shaping the law and, also, participate in the process themselves.
Significantly, while a number of the proposals currently on the table promise to bring about major improvements in the nation's health delivery system, none would put an end to the segregation, racial discrimination, or policies and practices of exclusion that have characterized the provision of medical care in the United States from its inception. As Derrick Bell cautions [p253] us, we must acknowledge the fact that ‘racism is a permanent component of American life.‘ And, to the extent that the reform packages retain divisions in the financing and delivery of services between the employed and the unemployed, or between the employed and those on public assistance-divisions that correspond to strata in our society-advocacy, including litigation, targeted at structural forms of discrimination will continue to be crucial.
Most generally, litigation can play a critical role in challenging practices that result in an unjust distribution of health services. Ironically, the sheer number of laws on the books suggest that poor people should already have adequate access to health care facilities. Many of the exclusionary policies and practices employed today are illegal and remediable. Indeed, civil rights statutes and equal access laws expressly prohibit discrimination on the basis of race and, in some cases, payor status. These statutes place affirmative obligations on the states not only to enforce civil rights laws but to ensure access to health care for Medicaid participants. Unfortunately, [p254] these statutes are not being enforced with any regularity, as the federal government and the states routinely fail to take enforcement action. Fortunately, however, most of these statutes permit private plaintiffs to bring lawsuits to challenge barriers of access to services for the poor. It is part of the lawyer's job to press for enforcement of the law and, where necessary, to litigate.
Lawsuits have at least three interrelated purposes. First, and, perhaps most importantly, as individual challenges to discriminatory or exclusionary practices, lawsuits bring relief to a plaintiff or group of plaintiffs.
Second, suits build a record of discriminatory and exclusionary practices, a record that can be used by advocates to educate the public and to support legislative and administrative change. This function requires lawyers to listen [p255] carefully to their clients and, then, to use their legal skills to make the stories public.
Third, collectively, these suits constitute a direct assault on the wall separating care for individuals of different racial or ethnic backgrounds and different income levels. This third point, in essence, suggests that enforcement of civil rights and access-oriented laws will help to undermine the viability of the current separation between the high-tech, quality care that wealthy, middle-class and predominantly white America has come to expect and the under-financed, inadequate and delayed health services so often provided to the poor and many people of color. Such litigation will contribute to a more equitable spread of the economic burden of serving the poor, thus adding to the already mounting pressure for change.
This approach to litigation is, in a sense, a descendant and an adaptation of the law reform model developed by Charles Hamilton Houston and Thurgood Marshall to challenge segregation in the 1930s, 1940s and early 1950s. These legal pioneers developed a record of cases that challenged unequal conditions experienced by African Americans as violative of the law, pursuant to the ‘separate but equal‘ doctrine of Plessy v. Ferguson. By so doing, they sought to undermine the basis for and legality of the prevailing doctrine. The strategy, together with changing mores and societal pressure, forced the Supreme Court to address the fundamental inequity of segregation and to bring its interpretation of the Constitution in line with a morality of human equality.
Unlike the effort that led to Brown v. Board of Education, however, the stream of litigation addressing inequality in access to health care does not flow directly to the Supreme [p256] Court. Civil rights litigation in the health care area is designed, instead, to enforce existing law and, thereby, to inform and contribute to the movement for national health reform, not only this year but in the future, as new financing and delivery systems develop. The wall of separation between health care for rich and poor, privately insured and uninsured, and white and black, has been a bulwark against a tide of true reform, as the poor and people of color lack political clout and the multi- tiered system has insulated many middle-class whites from sharing experiences of deprivation and denial.
Litigation is only one of a number of approaches that must be taken to close the gap. The attack must be coordinated and multi-faceted, and it must include not only lawsuits, but legislative work, public education and outreach efforts, community action, and greater emphasis on the direct provision of care by health professionals in low-income communities. Although the recent judicial climate does not preclude the development and implementation of an effective litigation strategy, litigators must be cognizant of the increased importance of placing lawsuits in the context of multipronged advocacy. Litigation must not displace community involvement but, instead, be a means of community organizing and empowerment.
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[A]dvocates must find ways to span the gulf between the realities of denial experienced by the poor and recognition of such harm, in law and fact, by courts. Since prior judicial findings against plaintiffs who previously challenged barriers of access quite obviously neither prevent nor nullify the very real experiences of exclusion sustained by our clients, it is the advocate's challenge to relate these experiences in a way that will be more meaningful in the realm of the law.
At first blush, civil rights and other laws that protect against racial discrimination and against the infringement of rights of access would seem to prohibit the erection of structural barriers to access. Legal standards under regulations promulgated pursuant to Title VI of the Civil Rights Act of 1964, for example, explicitly prohibit denials of access and actions with discriminatory effects, as do the community service [p258] regulations promulgated pursuant to the Hill-Burton Act. Similarly, recent Supreme Court opinions have focused on the impact of laws regulating abortion services in determining whether these laws violate the judicially recognized right to privacy under the due process clauses of the Constitution's Fifth and Fourteenth Amendments. Specifically, the opinions examine whether statutory provisions produce an ‘undue burden‘ on the ability of women to obtain abortions.
Yet time and time again, courts have looked askance at plaintiffs' challenges to denials of access and, specifically, at evidence of how defendants' methods of structuring the provision of health care burdens the poor. The problem has arisen in a number of contexts. This discussion will consider two: [p259] hospital relocation cases brought pursuant to Title VI, and challenges to restrictions on the provision of abortion services, restrictions that have particular effects on the ability of poor women to access reproductive health services. In both contexts, the challenged actions place barriers of access in the paths of the poor and burden their ability to obtain care. In both, facial readings of the applicable legal standards suggest that plaintiffs would be able to meet their burdens of proof. But in each, the experience of the poor has been devalued. Courts dismiss hardships faced by poor patients as (a) mere inconveniences or slight alterations in the options available, to be overcome by increased effort to obtain services on the part of poor individuals; or (b) issues of money, outside the purview of the courts. In each case, court assessments [p260] delegitimize or trivialize denials of access faced by the poor.
In practice, judicial devaluation of the significance of barriers of access can take a number of forms. First, courts ‘up the ante‘, transforming a standard that requires proof of adverse impact, or evidence that defendant's decision, action, policy or practice ‘burdens‘ an activity, into a more stringent requirement, one that compels plaintiffs to demonstrate that they were foreclosed or barred from access. While under the more stringent test plaintiffs remain able to challenge some flagrant forms of exclusion, the use of an ‘effective foreclosure‘ or ‘bar‘ test rarely, if ever, allows plaintiffs to be successful on claims against structural forms of discrimination. Second, courts look dismissively at factual evidence of harm presented by plaintiffs, thereby ensuring that plaintiffs' proof will be deemed insufficient to meet the requirement that plaintiffs show the adversity or burden caused by defendant's action.
A. Challenges to Discriminatory Hospital Relocations: Mussington v. St. Luke's Roosevelt Hospital Center
Mussington v. St. Luke's Roosevelt Hospital Center was filed in the Southern District of New York on behalf of community residents to challenge the movement of obstetric, neonatal intensive care, pediatric and other inpatient services out of the Harlem area. In 1986, New York's St. Luke's Roosevelt Hospital [p261] Center had announced plans to transfer its maternal and child care beds from a site near the medically underserved communities of Central and West Harlem to the hospital's downtown location, which serves a community that is less populated, in larger proportion white, generally healthier and of higher average income. The complaint alleged violations of Title VI and the Hill-Burton Act. In many ways, this case was a civil rights litigator's dream-lawyers represented community residents and groups that struggled on their own for five years before attorneys appeared on the scene. Community members fought in the political arena, held candlelight vigils, and otherwise demonstrated their strong commitment to retaining services that are accessible to Harlem residents. The client group had very clear ideas about how they were being harmed. They felt that, given the high incidence of illness in their communities and the shortage of providers, they could not afford the loss of a single hospital bed, much less the loss of the 300 or so-including all beds in the pediatric, obstetric and neonatal intensive care units-that were slated for removal from the Harlem area at the time.
Moreover, the mandates of statutory law were on [p262] plaintiffs' side, except that plaintiffs faced unfavorable precedent set by a few past hospital relocation cases. Although the precedent could easily be distinguished, its presence created an imposing hurdle for this kind of litigation. Specifically, courts in three cases, United States v. Bexar County Hospital District, NAACP v. Wilmington Medical Center, Inc., and Bryan v. Koch, refused to enjoin the removal of services by health care providers from African American and Latino to white communities, despite strong evidence of discrimination and, significantly for this discussion, evidence of the need for those services in the communities of color, as well as of the harm that would be caused by their departure. Despite impressive [p263] demonstrations of fact, the issue of harm was a sticking point in these cases and as preparation for Mussington began, plaintiffs' lawyers realized that they needed to reformulate how to prove that moving hospital services away from those in greatest need-and away, not incidentally, from those with the least mobility-would have adverse effects.
The fact that the loss of beds would adversely effect Harlem residents in need of inpatient care was obvious to the Mussington plaintiffs and other coalition members. For example, community residents stressed how important time can be to treatment. For a child with severe asthma or a seizure that causes respiratory failure, a few minutes might affect his or her chances for survival. Women in labor most often do not have the time or ability to take a bus or ride a subway to the hospital; and, for high-risk patients in labor, travel time by car influences choice of facility and, in turn, has an impact on the [p264] likelihood of delivering healthy babies. Area residents spoke about how location affects accessibility-greater distances not only increase travel time, but also the cost of transportation. Currently, for example, at least one local tenants' association keeps a few dollars on hand in case of emergency. If a resident needs to take a cab to the nearest hospital, people lend or donate the necessary four to six dollars. The supply of money is based on contributions from low-income tenants and is limited.
Moreover, residents had particular concerns about the loss of pediatric beds. When children are in the hospital, their parents need to make frequent visits. How, the residents asked, can people visit their children, keep their jobs and watch their other children if travel time and expenses are increased? Parents already borrow money to cover the costs of transportation and babysitting. The farther the hospital, the more resistent parents become to bringing their children to the hospital, even though there are few, if any, alternative sources of health care.
Community members became impassioned when discussing the extent to which Harlem is so grossly underserved and, also, how the area had already lost approximately ten hospitals. They felt strongly that St. Luke's Roosevelt Hospital Center was moving services in order both to reduce the number of African American and Latino patients and to try to attract more middle-class whites.
In fact, studies in medical geography conducted in the past two decades confirm what the clients knew: the loss of beds would limit access and change patterns of hospital use, with harmful effect. Research has shown that proximity, familiarity, [p265] and socioeconomic and cultural factors are determinants of access, as evidenced by hospital utilization.
[p266] The primary obstacle we, as lawyers, face in hospital relocation and closure cases is no longer the adoption of appropriate statutory language, the promulgation of regulations to prohibit actions with disparate effects, nor judicial recognition of such standards. Applicable anti-discrimination provisions now clearly require demonstrations of disparate effects and not evidence of discriminatory intent. Today, however, we must confront the mismatch between the experiences of our clients, who must contend with barriers of access, and the unwillingness of courts to acknowledge these experiences and to accord them weight. When a facility moves away from an African American or Latino community, particularly one with a high demand for medical services, thereby curtailing access, advocates must find ways of proving the element of harm to the courts, and, thus, of demonstrating the discriminatory nature of the action.
B. Challenges to Restrictions on the Provision of Abortion Services: Planned Parenthood of Southeastern Pennsylvania v. Casey
The challenge is similar for advocates representing low- income women of color in suits against restrictions on access to abortion services. In Planned Parenthood of Southeastern Pennsylvania v. Casey, the Supreme Court affirmed the constitutionality [p267] of a provision of the Pennsylvania Abortion Control Act that imposed a 24-hour waiting period before the performance of an abortion. The joint opinion by Justices O'Connor, Kennedy and Souter states clearly, ‘A finding of undue burden is a shorthand for the conclusion that a state regulation has the purpose or effect of placing a substantial obstacle in the path of a woman seeking an abortion of a nonviable fetus.‘ Despite evidence before the Court that the waiting period and other restrictions would actively interfere with the ability of poor women to obtain abortions, the Court, with little discussion and seemingly little consideration, concluded that these provisions were not substantial obstacles to obtaining an abortion.
It is clear that the 24-hour waiting period, for example, will significantly increase the costs and accessibility of abortions [p268] for poor women because of the limited availability of abortion services. As one brief for amici curiae suggested:
For poor women, it is already more difficult to find the necessary financial resources, medical information, child care and time away from work. The additional delay imposed by the 24-hour waiting period-exacerbated by the likelihood of scheduling difficulties at overcrowded facilities at which poor women receive care, as well as barriers of distance and mobility-will actively interfere with the ability of poor women and women of color to obtain abortions.
Again, the problem is less the standard, if one takes it at face value, and more the mismatch between the actual hardships faced by the poor as a result of restrictions on the provision of services and what is accepted as proof by courts, which have a tendency to dismiss the particular experiences of low-income people of color.
What conclusions can be drawn from these examples? First, we must acknowledge that courts are not applying impact-oriented standards in a neutral way. Perhaps such standards were not meant to pertain to the experiences of deprivation felt by poor people of color. Perhaps, simply put, judges administer or apply the standards in a biased manner, whether conscious or unconscious of the bias. As advocates, we must, nevertheless, find ways of demonstrating the harm in fact and of highlighting, in Cornel West's words, ‘the legal system's internal contradictions and blatant hypocrisy, using the very ideals-fairness, protection, formal equality-it heralds. ‘ [p270] We must build on our evidentiary base and make our case with greater force.
To be more effective in demonstrating harm, we need to consider strengthening relationships with social scientists working in such fields as health planning and epidemiology. For instance, although current medical geography literature is relevant to the hospital relocation issue, much could be done to demonstrate more conclusively the impact of moving services and, specifically, the effect of relocations and closures on utilization. First, medical geographers and health planners might be able to assist one another in developing a sound methodology for determining where inpatient beds and outpatient services are needed, one that takes into account both medical need, i.e., the incidence of illness in the population, and utilization patterns. Experts could then apply the methodology and present their findings in court. Such testimony might provide: (a) a sound means of assessing the legitimacy of defendants' claims that medical need justified the relocation or closure of services; (b) a measure for determining whether defendants' action represented the least discriminatory alternative; and (c) an additional indicator of the impact of the movement or closure of services on the ability of a population to obtain needed medical care.
Second, advocates might consider using the results of surveys and [p271] in-depth interviews to supplement current information on hospital utilization. While statistical analyses of the impact of relocating or closing services on patterns of utilization can demonstrate where patients are treated after the movement or closure of beds, the numbers fail to explain adequately the causes of the impact. The statistical studies, and the expert witnesses who testify to their results, leave courts wondering why patients so often do not go for treatment to the suburbs or to the gentrified areas of town that now house new or modernized facilities. Of course, plaintiffs and area residents do testify about the impact of a relocation or closure on their ability to obtain timely and appropriate care. This testimony can be crucial, but may also be dismissed by courts as anecdotal or amounting only to demonstration of inconvenience for a few select members of the population. Expert testimony on this issue may lend support for plaintiffs' statements, diminishing the possibility that courts will discount them as idiosyncratic or unrepresentative, and can help to refute defendants' claims that patients will, in fact, follow the beds. Surveys and in-depth interviews of community members might, thus, help to fill the gap. One such study of women of childbearing age in low socioeconomic neighborhoods in the vicinity of the uptown site of St. Luke's Roosevelt Hospital Center, for example, found that no more than 34% of those surveyed-no more than 34% of a sample that was sociodemographically representative of women who would otherwise use the uptown site, the location situated near Harlem-could be expected to seek obstetric care downtown once [p272] services were moved. This study was also able to identify factors, such as distance to care and past experience, that appeared to influence the population's health care seeking behavior.
And while there are already tremendous efforts to gather materials on the use of family planning and abortion services and the impact of regulations on the provision of abortions, generally, advocates must ensure that research focuses on the particular impact on low-income women of color. Where do women in poor counties and in rural and urban areas go for services? How do low-income women of color travel to providers? How do parental consent provisions affect the choices of adolescents from low-income families? How do such provisions affect their rates of utilization? How do mandatory waiting periods affect the choices of low-income women of color? And what has been the impact of past state restrictions on utilization by low-income women of color? In order to demonstrate the undue burden that restrictions place on our clients, we must present relevant anecdotal evidence in court [p273] and, also, must consult with researchers who can collect comprehensive data on the experiences of low-income women of color and can study how particular regulations will impact their ability to obtain services.
In anti-discrimination suits challenging hospital relocations and closures and in litigation against statutes that place restrictions on the provision of abortion services, courts have a duty to take seriously evidence of the ways in which structural barriers preclude meaningful access to care for the poor. Whatever the prospects for a fair hearing, however, we, as advocates, must find the means to present our cases more effectively. We must develop our proof to increase the probability of prevailing on behalf of our clients and, also, to serve the broader goals of litigation. Given the tremendous barriers of access faced by low-income people of color, the pervasiveness of discriminatory practices in the provision of health care, and the less than successful judicial record in health care access cases thus far, advocates must rethink strategies and conceive of new approaches. We should, for example, augment our information base and work with epidemiologists, other social scientists, demographers and medical specialists to develop the record. Then, with greater evidentiary power, we must build our cases in the courts by relating the realities faced by our clients.
Staff Attorney for the NAACP Legal Defense & Educational Fund, Inc. (‘LDF‘).
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