Special Section on the Medically Underserved

Texas Legislature Renews Institute's Funding

The Texas Legislature has renewed funding of the Health Law & Policy Institute for the next biennium, allocating $700,000 to continue funding the Institute's legislative projects. During the last biennium, the Institute engaged in a variety of legislative research projects. During the 76^th Session of the Texas Legislature, the Institute issued Legislative Briefings to legislators on 18 topics relating to pending health legislation.

In addition, the Institute researched and prepared reports on two of the Legislature’s interim charges, including the Senate Committee on Health and Human Services’ interim charge on patient billing and the House Committee on Public Health’s interim charge on the Indigent Health Care Act of 1985. The Institute also responded to individual research requests from Senate and House members. During the last biennium, the Institute prepared Update on Health, a monthly publication exclusively for state legislators summarizing key developments in federal and state agencies, courts, and other sources of importance to Texas lawmakers.

Health Law Program Ranked #1

In its March 29, 1999 issue, U.S. News and World Report once again ranked the University of Houston Law Center as the top law school in the country for the study of health law. The ranking is based on the opinions of deans and faculty at peer institutions. The University of Houston health law program includes, a J.D. program, an LL.M. program, a J.D./Ph.D. program, a J.D./M.P.H. program, research projects for the Texas Legislature, and various publications and lectures.

University of Houston Awards Presented: Mark Rothstein Receives Esther Farfel Award and Mary Anne Bobinski Receives Ethel M. Baker Award

Mark A. Rothstein, director of the Health Law & Policy Institute, received the 1999 Esther Farfel Award, the highest award the University of Houston bestows upon faculty members. Rothstein, a member of the University of Houston faculty since 1985, is an expert in genetics, occupational health law, and employment law. He has directed the Health Law & Policy Institute since 1986. Rothstein is the author or editor of 12 books, including Behavioral Genetics: The Clash of Culture and Biology (Johns Hopkins University Press 1999) (with Ronald Carson).

The Esther Farfel Award recognizes excellence in teaching, research, and service. Nominations come from faculty, staff, administrators, students, and alumni. This year marks the 20^th anniversary of the award. Aaron Farfel, a Houston businessman and philanthropist, served on the University of Houston Board of Regents for 16 years, and he established the award in his wife's name in 1979. Rothstein is the first law faculty member to receive the award.

Associate Dean for Academic Affairs and Professor Mary Anne Bobinski received the Ethel M. Baker Faculty Award for her efforts in bringing the Law Center to the Houston community. The Ethel M. Baker Award is given to the faculty member who has done the most in the previous year to promote the Law Center’s involvement with the community.

Bobinski’s work included giving over 100 presentations to community groups and professional/bar conferences on a wide variety of issues in the field of health law as well as serving in leadership roles on the board of directors for several health-oriented non-profit groups.

Michael A. Baker ’71 established the Ethel M. Baker Faculty Award in memory of his mother. Ethel M. Baker was the valedictorian of her high school and because of a lack of resources was unable to attend college. She served as her son’s inspiration and indefatigable supporter.

Laura F. Rothstein has been chosen Professor of the Year for 1999 by the Asian Law Students Association and the Black Law Students Association. She has also been appointed a member of the Disability Issues Committee of the State Bar of Texas.

Ronald Turner received the 1999 Student Bar Association Outstanding Professor of the Year Award and was awarded tenure by the University of Houston effective September 1, 1999.

Richard Craig Smith Receives Fleming Award

Richard Craig Smith, Assistant United States Attorney, Southern District of Texas, was recently awarded the 50^th Annual Arthur S. Fleming Award. The award recognizes outstanding young men and women who have made exceptional contributions to the federal government. Smith received the award for his outstanding achievements as a federal prosecutor, dedication to the law, and commitment to serving the public by reducing crime. He has represented the government in many important public corruption cases. Currently on detail to the Executive Office for United States Attorneys, he contributes to the development of programs concerning civil rights, immigration, narcotics, organized crime, human rights, and other vital areas. Smith received his LL.M. in health law from the University of Houston Law Center in 1998.

UH Student Wins National Health Law Writing Award

Sharona Hoffman (LL.M. '99) was selected as the winner of the Epstein, Becker & Green National Health Law Writing Competition. Her paper, "A Proposal for Federal Legislation Regarding Health Insurance Coverage for Experimental and Investigational Treatments," was chosen over papers submitted by students from 56 law schools throughout the country. Ms. Hoffman will be joining the faculty at Case Western Reserve University School of Law in the fall.

Elizabeth D. Rockwell Receives Institute's Distinguished Service Award

At the March 10, 1999 meeting of the Health Law & Policy Institute Advisory Board, Elizabeth D. Rockwell received the Institute's Distinguished Service Award. Mrs. Rockwell, a member of the Institute's Advisory Board, has been a strong supporter of both the Institute and the University of Houston.

Mrs. Rockwell, Executive Director, Private Client Division of CIBC Oppenheimer Corp., sponsors the Discover UH Lecture Series at the University of Houston. University lecturers are selected for monthly presentations to the Houston community. Mrs. Rockwell, who was a student at the University of Houston, is a nationally recognized expert in estate, retirement, investment, and tax planning, and a strong supporter of the University of Houston. At its May 1999 Commencement, Mrs. Rockwell was awarded an honorary degree.

Children's Defense Fund Annual National Conference Held in Houston

The 1999 Children's Defense Fund (CDF) Conference was held in Houston from April 29-May 2. Health Law & Policy Institute board member Michael Solar was instrumental in the planning of this conference. This past year he served on the CDF advisory board. Director of the Institute, Mark Rothstein and Associate Dean Laura Rothstein were also members of the planning committee.

To heighten awareness of the issues facing Houston's children, a collaborative effort nationally known as Child Watch was included in this year's conference activities. Cathy Rupf, Assistant Director of the Institute, was a member of the steering committee, which was chaired by Rosie Valadez McStay from the Office of Government Relations at the Texas Children's Hospital. This committee was responsible for creating the Child Watch Visitation Program for Houston.

The elements of the Child Watch Visitation Program included raising awareness concerning children's issues, creating new leadership, and inspiring action. The focus this year was "Opening Doors to Children's Health." The visits included: Rusk School Based Health Clinic, Ben Taub Neonatology Department, Martin Luther King, Jr. Community Center, and the Streetwise/Youth Advocates/Mobile Health Clinic.

Law Center Awards Presented

At the ceremony held on March 24, 1999, J.D. Epstein and Thomas Paul received Adjunct Faculty Service Awards. R. Jay Shively received the Murray M. Nusynowitz Memorial Scholarship Fund Award. Health law student Amy McGwire was awarded the Ersie Kern Ator White Student Scholarship, the Prudential Life Insurance Scholarship, and the West Publishing Co. Corpus Juris Secundum Award for the highest grade in Property II.

Gardere Wynne, Sewell & Riggs Recognized

Gardere, Wynne, Sewell & Riggs, sponsor of the annual Health Law Distinguished Lecture Series, was recognized on May 11, 1999 at the Hispanic Bar Association Annual Presidents Day awards banquet. The firm received a Diversity Achievement Award for supporting the Statement of Goals for Increasing Minority Hiring, Retention and Promotion and for achieving the goals that had been set.

H.L.O. Elects New Officers

The new officers of the University of Houston Health Law Organization for 1999-2000 are:

President -- Amanda Green
1^st Vice President -- Tiffany Frost
2^nd Vice President -- Becky Fernandez
Treasurer -- Lois Miller
Recording Secretary -- Tillery Gill

H.L.O. Hosts a Variety of Spring Events

On March 9, 1999, Professor Ron Turner moderated a session on "HIV in the Workplace" for members of the several student organizations, including the Health Law Organization (H.L.O.). During the month of April, the University of Houston Law Center's H.L.O. collected donations of food, clothing, and toys for the Martin Luther King Center, a one-stop resource for mothers and children in need to obtain immunizations, food, and diapers.

On April 13, 1999, the H.L.O. held a lunch meeting featuring guest speaker Brenda Strama of Vinson & Elkins. Ms. Strama answered questions about careers in health law and current health law issues. The H.L.O. held its End of the Year Party in the Health Law Suite on April 23, 1999.

The Institute thanks the Health Law Organization for its generous gift of a refrigerator.
 

Behavioral Genetics: The Clash of Culture and Biology

In Behavioral Genetics: The Clash of Culture and Biology, editors Mark A. Rothstein, director of the Health Law & Policy Institute at the University of Houston Law Center, and Ronald A. Carson, director of the Institute for the Medical Humanities at the University of Texas Medical Branch at Galveston, use well-known experts from the fields of genetics, ethics, neurosciences, psychiatry, sociology, and law to address the cultural, legal, and biological underprinnings of behavioral genetics

The authors discuss a broad range of topics, including the ethical questions arising from gene therapy and screening, molecular research in psychiatry, and the legal ramifications and social consequences of behavioral genetic information. Throughout, they focus on two basic concerns: the quality of the science behind behavioral genetic claims and the need to formulate an appropriate, ethically defensible response when the science turns out to be good.

SAVE THE DATE

"Representing Students with Disabilities in Special Education Cases"
October 15, 1999
8:00 a.m. to 5:00 p.m.
Houston, Texas
MCLE training sponsored by Advocacy, Incorporated and the Health Law & Policy Institute

FROM THE WEB

Health Law Perspectives, a publication available on the Health Law & Policy Institute's web site, features articles by Health Law & Policy Institute faculty and scholars analyzing recent developments in health law. All of these articles can be accessed on the Institute's web site at http://www.law.uh.edu/healthlaw.

Recent Articles Added to the Institute's Web Site

The following is a list of articles that were published in Health Law Perspectives on the Institute's web site from February 15th to May 15th, 1999:

Medicaid Managed Care: An Overview of the Issues  Cardiovascular Disease Prevention  Consider Dr. Kevorkian Stopped, but Important Issues Linger Texas Legislature to Address Issues on Viral Hepatitis Should Medical Licensing Examinations Be Required for Physician Licensure?  Bragdon v. Abbott—First Circuit Rules on Direct Threat Defense to ADA Claim  Medical Records Privacy: A Hot Issue for Action in 1999 Deterring Health Care Fraud and Abuse Mandated Mental Health Benefits for Children  Privacy of Pharmacy Records  Patient Consent for Emergency Care: Recent State Initiatives  Prophylactic Surgery Option Forces Difficult Choices

Prisoner Has No Eighth Amendment Right to Protease Inhibitors Cloning in the Eyes of God: The Argument that Cloning is Not Prohibited by Jewish Law  Newborn Hearing Screening The Growing Problem of the Uninsured: Why Is It So Hard To Resolve?  The Ten Million Dollar Man Supreme Court Issues Further Clarification about Required Health Services Under Special Education Mandates  Mandatory Premarital HIV Testing  Physicians and Patients Claim HMO Cost-cutting Incentives Violate ADA  Ephedrine Remains a Public Health Threat While Regulatory Squabbles Linger  Sophisticated, Screened Medical Information Now Available on the Internet

BOOK REVIEW

What is privacy? How important is the value of privacy in a free society? What is the status of privacy in relation to other social values such as public health and public safety? How and to what extent should privacy be limited to protect the common good? These are some of the central questions in Amatai Etzioni's new contribution to communitarian perspectives on public policy issues.

Etzioni does not offer his own definition of privacy until near the end of his book (p. 196):

The exaltation of the value of privacy in the service of individualism, especially in the United States since the 1960s, does so at too great an expense to the common good. Etzioni proposes his communitarian approach as a middle ground between radical individualism and authoritarianism. Whether or not one agrees with all his specific recommendations, this book revives public discussion and provokes reexamination of privacy policies in America.

Etzioni relies on an interdisciplinary approach to privacy policy which draws on "sociology, psychology, ethics, and jurisprudence (and occasionally other bodies of knowledge) to cobble together a coherent policy analysis" (p. 15). The book is rich with citations to the literature of those disciplines. But the text is written for an educated general reader or policy maker who is neither a specialist nor an expert. The policies proposed are sometimes general rather than specific, but several issues are examined in detail. The particular problems he addresses are as follows:

• Mandatory HIV testing of infants
• Control of convicted sex offenders
• Regulation of encryption technologies (coded communications)
• Requiring personal identification cards (domestic passports)
• Protection of medical records

Etzioni believes that privacy protection for encryption technologies will dangerously obstruct the common good. Criminals – such as drug dealers and terrorists – would unduly benefit from privacy protections for electronic communications. He favors government regulation to preserve public safety. Americans are skeptical about government; they particularly fear government snooping and oppression. Etzioni points out that for this reason most Americans would reject the idea of personal identification cards – a "domestic passport." But the issue is more complex. Etzioni makes a plausible but unconvincing case for a universal personal identification system.

In his chapter on medical records, unlike the other chapters in the book, Etzioni argues that privacy needs more rather than less protections. He presents a persuasive argument that the greatest threat to the privacy of medical records comes from the private sector rather than the government. He shows how the selling of medical information by private firms undermines medical privacy. Etzioni doubts that relying on patients' informed consents to disclosures or litigation after a violation has occurred will not adequately protect medical privacy. This chapter makes a major contribution to the current debate about the privacy of medical records.

Overall, Etzioni's communitarian analysis sheds new light on privacy issues that have generated seemingly in terminable and unresolvable debates. The book raises public discussion to a higher level while also outlining, at least in broad terms, innovative strategies and public policies. Finally, Etzioni avoids the pitfalls of polarizing his views from those with whom he disagrees. He puts into practice his belief that public policy debates should be based on evidence, reasoning, and civil dialogue.
 

FOCUS ON OUR GRADUATES

Michelle B. Gerroir (LL.M. '99) is a health law attorney concentrating on federal and state health care regulatory issues at Baker & Hostetler in Columbus, Ohio.

J. Michael Solar (J.D. '80), a member of the Institute's Advisory Board, is one of 3 Fathers of the Year for 1999 selected by Community Partners, a non-profit organization which provides low-cost, human services to Houston's inner city.

Gregory A. Triber (J.D. '98) recently had two articles published. "Prospecting for Genetic Gold: Compensating Genetic Research Donors" appeared in the Autumn 1998 issue of the Journal of Biolaw & Business, and "Growing Pains: Disputes Surrounding Human Reproductive Interests Stretch the Boundaries of Traditional Legal Concepts" was published in the Seton Hall Legislative Journal, volume 23, number 1, 1998.

Richman Wee (LL.M. '96), who is residing in New Zealand, recently accepted a position as Policy Advisor to the Health Research Council, which he describes as the equivalent of the National Institutes of Health here.

PUBLICATIONS

Elaine Lisko

• Chapter in "Occupational Medicine and the Law" in Occupational Medicine Secrets (Rosemarie M. Bowler & James E. Cone eds., Hanley & Belfus, Inc., Philadelphia 1999)

• "Physicians' Legal Defensiveness and Knowledge of Medical Law: Comparing Denmark and the USA." 27 Scandinavian Journal of Public Health 1 at 18-21, March 1999 (with Swanson, J.W.)

• Disabilities and the Law (2d ed.) (Cum. Supp. WestGroup Spring 1999)

• Behavioral Genetics: The Clash of Culture and Biology (Johns Hopkins University Press 1999) (co-edited with Ronald Carson)

• "'Substance Abuse and the ADA: Some Unresolved Issues" 8 Employment Testing Law and Policy Reporter No. 4 at 1, April 1999

• "Employer Liability for Supervisory Hostile Environment Sexual Harassment: Comparing Title VII's and Section 1983's Regulatory Regimes," The Urban Lawyer, Summer 1999

• "Change the Way We License Teen Drivers, " Houston Chronicle, 1C, April 4, 1999

• "Let's Phase in the Right of Driving," Dallas Morning News," 5A, April 9, 1999

• "A Life is a Terrible Thing to Waste in a Car Wreck," Amarillo Daily News, 5A, April 19, 1999

Mary R. Anderlik

• "Handling Problems with Managed Care," for Bridging the Great Divide: Independent Living and Health Care teleconference sponsored by IL NET, April 17 and April 18, 1999

• "End-of-Life Issues at the State Level," Panel, Last Acts Regional Workshop on Improving End of Life Care, sponsored by the Robert Wood Johnson Foundation, March 10, 1999, San Antonio, Texas

• "Affirmative Action and the Impact of Hopwood," Department of Justice Conference on "Race, Ethnicity and the Law: Challenges Facing the Legal Profession," Georgetown University Law Center, June 8, 1999, Washington, D.C.

• "Disability Issues for Legal Education and the Legal Profession," National Association of Law Placement Conference, April 22, 1999, San Antonio, Texas

• "Current Issues for Disabled Persons on College and University Campuses," Houston Higher Education Legal Roundtable, Houston, Texas, May 25, 1999

• "Legal Aspects of Screening for Hepatitis in the Workplace," American Liver Foundation, Chicago, April 6, 1999

• "Behavioral Genetics and Society," University of Utah School of Medicine, Salt Lake City, April 13, 1999

• "Genetics and Minorities," Xavier University of Louisiana, New Orleans, April 17, 1999

• "Genetics and Medical Practice" (Richman Lecture), Mt. Sinai School of Medicine, New York City, April 21, 1999

• "Genetics and the Courts," Fifth Circuit Judicial Conference, Houston, April 29-30, 1999

• "The Human Genome Project and the Future of Health Care, Baptist Health System, San Antonio, May 15, 1999

• "Pharmacogenetics and Gene Therapy," Baylor College of Medicine, Houston, May 18, 1999

• "Genetic Testing for Cancer Susceptibility" (Valerie Fund Lecture), Overlook and Morristown Hospitals, Morristown, NJ, May 20-21, 1999

• "Ethical Boundaries in Cancer Genetics," St. Jude's Children's Research Hospital, Memphis, May 28, 1999

• "Genetics and the Courts," Federal Judicial Center, San Francisco, June 3, 1999

• "Emerging Issues in Behavioral Genetics," National Health Law Teachers Conference, St. Louis, June 5, 1999

• "Hepatitis and the Workplace," American Liver Foundation, Dallas, June 11, 1999

• "What Has the Health Law & Policy Institute Done for You Lately?," Harris County Medical Society, Houston, May 13, 1999

• "Understanding and Getting Others to Understand the Effects of Traumatic Brain Injury," National Legal Aid and Defender Association, Life in the Balance XI Conference, Atlanta, Georgia, March 14, 1999

• "Exactly What is an Ethics Consultation? Case Study: Traumatic Brain Injury," Health Care Ethics Consortium of Georgia, Emory Healthcare System, Atlanta, Georgia, March 15, 1999

• "Interdisciplinary Interprofessional Bioethics: Bridging Gaps and Crossing Boundaries," Honor Society of Phi Beta Kappa, The University of Texas Medical Branch, Galveston, Galveston, Texas April 6, 1999

• "Transplantation Ethics," Marion Hargrove Memorial Lecture, Louisiana State University Medical School, Shreveport, Louisiana, April 20, 1999

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Special Section on the Medically Underserved
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The uninsured and underinsured,
the poor and near poor,
the homeless,
persons living in rural areas,
persons living in poverty stricken urban centers,
persons with chronic illnesses,
persons with HIV/AIDS,
migrant and seasonal farm workers…

These are some of the faces of the medically underserved. Despite some indications of improvement, certain minority groups continue to suffer from some diseases at a much higher rate than white Americans. Vietnamese women suffer from cervical cancer at almost 5 times the rate of white Americans. The rate of stomach cancer for Hispanics is 2 to 3 times higher than for whites. Infant mortality rates are 2.5 times higher for African Americans and 1.5 times higher for Native Americans than for whites.

The Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services, which works to ensure that the uninsured and medically underserved in the United States have access to health care, estimates that the number of uninsured Americans was 37 million in 1987. That number jumped to 43.4 million in 1998. With such high numbers and continued growth, the need to address the problems of medically underserved populations is compelling. The articles that follow in this special section examine issues facing the medically underserved.
 

Carlos A. Moreno, M.D., M.S.P.H.
C. Frank Webber Chair in Family Medicine
Professor and Chair
Department of Family Practice and Community Medicine
University of Texas-Houston Medical School

It is estimated that over 43 million Americans, 18% of the population, do not have medical insurance coverage. Many of these individuals lack access to health insurance coverage since their employers do not offer health insurance or they are unable to afford it. Since most Americans over the age of 65 are covered by Medicare, the uninsured are generally under 65 and are mainly individuals working in low-income jobs, and their families. A recent Kaiser Family Foundation fact sheet reported that 80% of uninsured individuals are employed full-time or are dependents of employed individuals. Individuals with no connection to the workforce account for only 10% of the uninsured. Nineteen percent of the uninsured are children. 85%, of uninsured children live in families with at least one full-time working parent.

There is a great state-to-state variation – the proportion of the population which is uninsured ranges from 8% in Hawaii to 38% in Texas. Medicaid eligibility criteria vary from state to state. Texas leads the nation in the number of urban areas having the largest number of uninsured non-elderly populations, with El Paso having 39% of its non-elderly population being uninsured, followed by Houston at 31%, San Antonio 27%, and Dallas at 23%. In areas with large numbers of uninsured, a greater proportion of families have incomes below 200% of the federal poverty level (less than $33,000 for a family of four). Since, on the average, minorities and immigrants have lower incomes, urban areas with high uninsured rates also have a greater proportion of immigrants and ethnic and racial minorities.

Another group of uninsured Americans is the near elderly, that is, those individuals older than 50 but younger than 65. These individuals, many times, lose health insurance due to leaving the workforce via early retirement, or may have lost a spouse who was carrying their health care insurance.

How does not having health insurance impact one's health? Individuals who are uninsured are more likely to be hospitalized for avoidable medical conditions. Uninsured patients are also less likely to have invasive procedures that are relatively costly or are at the discretion of the physician. Half of uninsured adults have no regular source of health care. Individuals without health care are more likely to postpone filling a prescription or postpone obtaining health care because they cannot afford it. Uninsured adults obtain fewer preventive services such as mammograms or regular examinations than insured adults do.

Uninsured children are 30% more likely to fall behind on immunizations and well-child care and are 80% more likely to have never received any routine childcare. In the United States, one in five uninsured children have no regular source of health care. In addition to not obtaining routine well–childcare, uninsured children are 70% more likely than insured children to require medical care for chronic conditions such as asthma.

What are the policy implications for having a large number of uninsured? First, the uninsured are more likely to wait before obtaining health care. Secondly, there is a greater financial burden on public and private hospitals as well as community clinics that provide care for the uninsured. Finally, the working uninsured are less healthy and, thus, less productive members of the workforce.

Local and state governments will continue bearing the burden of providing health care to underserved populations using local taxing authorities and maximizing federal funding for expansion of Medicaid. Many states are now taking advantage of the state Children's Health Insurance Program (CHIP) which allows states to obtain funding for extending coverage to uninsured children of low income working families. Until federal action is taken to develop universal health coverage, local and state governments will continue to determine policies for the provision of health care to uninsured populations.
 

Welfare Reform and Medicaid:Expanding Medicaid Coverage for Two-Parent Families

Sidney D. Watson, J.D.
Professor of Law
Mercer University School of Law

Medicaid covers only about half of poor Americans. One reason Medicaid coverage is so sparse is that Medicaid eligibility was originally conceived as a supplement to federal cash welfare programs for the "deserving" poor--single parents on Aid to Families with Dependent Children (AFDC) and the aged, blind and disabled receiving Supplemental Security Income (SSI) payments. Although Medicaid expansions in the 1980s opened Medicaid to additional poor children, pregnant women, elderly, and disabled, the program remained closed to poor working parents unable to satisfy the strict categorical eligibility requirements for AFDC. However, recent welfare initiatives ending the AFDC program have transformed Medicaid for poor families. States may now offer Medicaid to poor two-parent families with children on the same terms that they cover single-parent families. This change mends one of Medicaid's biggest holes.

Under the old welfare regime, poor families receiving AFDC automatically received Medicaid. Medicaid was a side order to cash welfare. Medicaid eligibility determinations were simple. State policy making was more complex. To expand Medicaid eligibility for parents, states had to increase their welfare rolls or obtain a waiver of federal Medicaid requirements. While a few states obtained Medicaid waivers to cover additional parents, most states were unwilling to shoulder heavier welfare obligations as the price for Medicaid expansion.

The Personal Responsibility and Work Opportunity Act of 1996 (PRWOA) opened the door for states to extend Medicaid to more parents without having to expand welfare. The Act ended AFDC and replaced it with the new time limited Temporary Assistance to Needy Families (TANF). It also ended the automatic link between eligibility for cash welfare and eligibility for Medicaid.

To preserve Medicaid coverage for low income families with children while reducing the welfare rolls, the welfare reform law created a new Medicaid eligibility category, called "Section 1931" eligibility. Under the new Section 1931, families who would have qualified for the defunct AFDC program are still eligible for Medicaid, regardless of whether they qualify for TANF. Hailed as a mechanism to maintain families on Medicaid, Section 1931 also offers states sufficient flexibility to expand Medicaid to cover not just the single-parent families generally eligible for the old AFDC program, but all two-parent families who meet states' financial income guidelines.

Under the old AFDC eligibility rules, two-parent families were generally ineligible for AFDC and thus Medicaid. The AFDC program extended benefits only to "deprived" children, those who lived in single-parent families because one parent was dead, absent from home, or disabled. Two-parent families were considered "deprived" only if the principal wage-earning parent worked less than 100 hours per month. The 100 hour rule disqualified most two-parent families from AFDC and therefore Medicaid.

In August 1998, to facilitate implementation of Section 1391 and in recognition that TANF work rules require most parents to work in volunteer or paid jobs, the U.S. Department of Health and Human Services repealed the 100-hour rule. States now have the flexibility to offer Medicaid coverage to two-parent families on the same basis that they cover single-parent households. Moreover, Section 1931 allows states to liberalize their Medicaid income and resource rules effectively enabling states to increase their Medicaid income and resource limits.

States may now transform Medicaid from a safety net for single-parent families to a safety net for all poor families with children. Most states have opted to drop the100 hour rule and fully include two-parent families in Medicaid. The task now is to spread the word that Medicaid is becoming a more comprehensive safety health insurance for poor families.
 

Expanding Coverage to Medically Underserved Populations is Not Sufficient

Kevin D. Williams, J.D., M.P.H.
Development and Policy Director
Berkeley Youth Alternatives (BYA)

Current efforts by states and the federal government to expand health care coverage to medically underserved populations, although ambitious, have had somewhat limited success. For example, in a recent speech, U.S. Health and Human Services Secretary Donna Shalala announced that in the first year of the States Children’s Health Insurance Program (CHIP), with 47 states and the District of Columbia participating, nearly one million children were enrolled into CHIP or Medicaid expansion programs. Yet, as First Lady Hillary Rodham Clinton recently remarked, this apparent good news is tempered with the fact that states, in the first year of the five-year CHIP initiative, only spent $500 million of the $4.3 billion allocated for expansion to the medically underserved, meaning that even more children and families could have been helped. For CHIP and other initiatives to hold any great promise at the state and federal levels, however, attention must be paid to issues other than expanded eligibility and coverage for the medically underserved. Questions such as why parents are reluctant to enroll into publicly-supported health care programs for which they and their children are already eligible must be answered. Critical issues such as the lack of health facilities and providers willing to serve the medically underserved, the impact of managed care systems on the fiscal viability of traditional and safety-net providers as well as the public health system, varying cultural attitudes toward health care and health systems, geographic isolation of large segments of the medically underserved, lack of an effective transportation system, and the lack of culturally competent and bilingual/bicultural health care professionals must be addressed to adequately ensure quality access to care for the medically underserved. These so-called "non-financial barriers to care," if not adequately addressed, will continue to add tremendous costs to an increasingly overburdened and fragile health care system.

Public health policy research suggests that chronic underenrollment of medically underserved populations in publicly supported health care programs stems primarily from the lack of culturally and linguistically appropriate outreach strategies employed by the states. Consumer education and outreach campaigns that integrate community-based, cultural norms have largely been ignored by states to the point whereby those enrolled in programs do not represent the "hard to reach" populations, e.g. geographically isolated populations outside the reach of traditional media campaigns, severely undereducated populations, communities of color. State efforts to increase coverage to the medically underserved have been made increasingly more difficult now with the delinking of Medicaid benefits from Temporary Assistance to Needy Families (TANF) program, formerly Aid for Families and Dependent Children (AFDC). Families whose benefits are subject to termination from TANF are not being appropriately informed that they may be eligible to receive continued Medicaid benefits if they complete the necessary eligibility forms. This has been one of the unintended consequences of "ending welfare as we know it" and has led to increasing frustration, mounting distrust, and growing disillusionment among the medically underserved who, if not covered, will continue to seek out seemingly routine care in costly emergency room settings.

The issues confronting the medically underserved have been ignored to a large extent by political expediency and the nature of health policy and health politics today. The current debates occurring in the U.S. Congress and in state houses across the country over a "Patient Bill of Rights," primarily discussed within the commercially-oriented managed care environment, have pushed aside other important managed care challenges facing the medically underserved who are being forced into managed care systems. These challenges include the type and quality of access provided by managed care systems; the problems individuals experience in trying to navigate through managed care systems; the incentives inherent in managed care systems to withhold treatment, especially from patients of color who make up the largest percentage of the medically underserved; and the lack of consumer education about managed care systems.

These unmet challenges have led to the acceleration of disparities of disease morbidity and mortality rates within the medically underserved populations and communities of color. For example, according to data cited by the new federal Racial and Ethnic Health Disparities Initiative, African-American men under 65 years of age suffer from prostate cancer at nearly twice the rate of whites, Latinos have two to three times the rate of stomach cancer as whites, Vietnamese women experience cervical cancer at nearly five times the rate of whites, and infant mortality rates are 2.5 times higher for African-Americans and 1.5 times higher for Native Americans. Uncertainties abound as to the impact of managed care on the medically underserved when it is a matter of health status and eliminating health disparities. When dealing with the medically underserved population, the traditional public health system should not give way to the "medical model" of care and disease management which currently dominates most health care delivery systems. This emphasis on the medical model continues to neglect traditional and safety-net providers, community health norms and practices, health promotion, wellness models of health, and general preventive practices which may better suit the needs of medically underserved populations, which, to date, have not adequately benefited from publicly-supported programs to expand health care coverage.

A portion of these remarks was presented at the 1999 California Black Health Network’s 20th Annual Conference in Oakland, California on May 1, 1999.
 

Health Care for Minorities in the 21^st Century: Eliminating Racial Disparity in the Health Care System

Vernellia Randall, J.D., M.S.
Professor of Law
University of Dayton

There is a collision about to occur. The fallout from that collision will include fatalities, injuries and prolonged illness. The collision will occur at the intersection of the racial disparity in health care, the rationing function of managed care, and the historical inadequacy of the legal system in dealing with racial disparity in health care.

Racial disparity in the health care system. The existence of racial disparity in the health care system is unquestionable. Racial disparity is manifested in racial barriers to hospitals, to nursing homes, and to physicians and other providers. The institutional racism that exists in many hospitals manifests itself in a number of ways including the adoption, administration and implementation of policies that restrict admission; the closure, relocation or privatization of hospitals that serve the minority communities; and the transfer of unwanted patients (known as "patient dumping") by hospitals and institutions. Nursing homes are the most segregated publicly licensed health care facilities in the United States. Racial discrimination is the major factor explaining nursing home segregation. Finally, shortage of minority health professionals affects both access to health care and minority input into the health care system. In particular, with so few minority health care professionals, the control of the health care system lies almost exclusively in white hands. The result is an inadequate, if not ineffective, voice on minority health care issues. This lack of minority voice leads to increased ignorance on the part of whites regarding issues pertaining to minority health. In particular, when health care issues are defined, the policy makers' ignorance results in their overlooking minority health concerns.

Racial barriers to access are only one aspect of a racialized health care. There are racial disparities in both the type of services ordered and in the provision of medical treatment. Another aspect of institutional racism is the occurrence of racial disparities in the type of services. Numerous studies document the disparity in health care that is provided based on color. These studies all document that minorities receive health care treatment different from white male. Whether this difference is based on individual prejudices or medical school training, it is evidence of institutional racism that cannot be tolerated. Of all the influences on the health of minorities, the health care system should be free of racial prejudice, stereotyping and disparity.

The rationing goal of managed care organizations. Managed care organizations (MCO) complicate the problem of racial disparity in health care. MCOs have not developed in response to the poor health status of underserved populations, but to third-party payers' and employers' desire to control expenditures. The assumption behind MCOs is that expenditures for health care can be decreased by reducing the significant overutilization in the current system. MCOs increase the incentive for both patients and providers to ration. The problem with utilization review is that standards and decisions are made from data drawn from a largely European American, middle-class, male subgroup. Such data are inadequate and unreliable when applied to ethnic Americans and the underserved for several reasons.

First, because of the lack of prior health care, minorities typically approach MCOs with a backlog of illnesses that have been inadequately treated or have gone untreated. Because the illnesses are more severe, they require more intense treatment over a longer period, so that treatment falls outside of the normal course.

Second, even for illnesses developed after enrollment in an MCO, the course of the illness is likely to be longer and more severe. Without access to adequate housing, food, and clothing, the poor are sicker than the affluent. But even middle-class minorities have a different health status than do middle-class European Americans. Health status is related not only to the availability of current necessities (food, housing, etc.), but also to health care received during childhood and the health status of the parents. For many middle-class minorities, a lack of childhood or parental health care has a generational or multi-generational effect on health status and the need for health care. If MCOs do not take this generational effect on health status and the need for health care into consideration when developing protocols or practice parameters, minorities may continue to receive inadequate health care.

Third, the protocol for utilization review comes largely from research on white middle-class males. Only in the last several years has there been a concerted effort to include women and minorities in trial studies of drugs and other treatment protocols. Even so, health care providers have failed to recognize that race can influence the desired treatment of a disease and how the disease responds to treatment. For instance, although hypertension is a leading health problem for African-Americans, only recently did a study conclude that hypertension medications prescribed for African-Americans were not as effective in controlling hypertension as they were for European Americans. MCOs' utilization review protocols are not likely to recognize these differences.

Finally, providers hired by third-party payers to conduct utilization review often lack the cultural background to factor into their recommendations regarding services a patient's poverty, race, class, and prior health care. Unfortunately, many of the providers who traditionally serve minority populations are not signing contracts with MCOs. Indeed, minority providers are finding the doors to MCOs closed to them both as owners and provider-employees. Without providers who consider race, class, and poverty, even culturally relevant protocols may be misapplied.

It is important to remember that prospective decisions of utilization reviews have a fundamentally different impact on the patient than do retrospective decisions. Theoretically, patients know what treatments will be paid for under either plan. However, the two systems have significantly different effects on patient behavior. In the retrospective system, a patient makes a decision about medical care and receives the medical care with only a potential risk of disallowance. Thus, a minority who needs a service will more likely than not receive it. Consequently, the potential for injury because of an erroneous decision during utilization review is low.

Nevertheless, utilization review alone is not the major culprit. Under utilization review, the potential to control costs is tempered, at least theoretically, by a patient's ability to protest denial of services. It is the combination of utilization review with financial risk-shifting which provides the greatest potential for harm to minorities. Under managed care, health care providers act as gatekeepers; that is, they limit access to health care services such that third-party payers do not find excessive utilization. This gate-keeping shifts the focus of the health care system from the doctor-patient relationship to the doctor-payer relationship. Ultimately, the doctor and payer determine not only the quantity of services received by the patient but the quality of care as well. This shift of focus has serious implications for minorities. First, given that most utilization-review standards are culturally insensitive, the physician is under the greatest pressure to deny or modify services to the population -- such as minorities -- not represented in the standards. These are the patients who require the most services. Physicians may also believe, either consciously or subconsciously, that underserved Americans are less likely to deserve the services, or less likely to complain. As MCOs continue to grow and as more physicians continue to sign contracts with them, these concerns will intensify.

Thus, managed care may respond to utilization review and risk-shifting incentives by cutting not only unnecessary and marginally necessary services, but also medically necessary care. It is not unrealistic to expect disparities based on race and class to be exacerbated by utilization review and financial risk-shifting. Using MCOs as an approach to reduce utilization fails to take into account population groups for which there is almost no overutilization. Minorities have under-utilization rather than over-utilization. When that underutilization is combined with poorer health status, these populations will need more services than the norm. To be quite blunt, managed care is likely to increase the incentives to discriminate based on race.

Historical inadequacy of the legal system. The law has focused on eliminating health care discrimination through Title VI of the Civil Rights Act of 1964. Little apparent use has been made of available state laws.

Almost all of the attention on health care discrimination has focused on Title VI. But Title VI has been proven of little assistance in ending health care disparity caused by facially neutral policies. Title VI's implementing regulations proscribe facially neutral policies and practices with a disproportionate impact on minorities. However, lower courts have allowed providers to defend such policies with ease. Many proposals addressing the issues of disparity in health care focus on education and structural incentives. Even proposals that have looked at the law have failed to do a comprehensive analysis of state and federal law. An appropriate legal structure is essential to eliminating institutional/cultural racism. In an effective public health policy, appropriate state and federal laws must be available to eliminate discriminatory practices in health care. In particular, such an approach would :

• reform state and federal anti-discrimination law to effectively address the issue of racial discrimination in health care

• systematically collecting race data and developing race specific policies

• control managed care by reforming ERISA and making MCOs responsible for their decisions, outlawing the proprietary nature of MCO protocols, establishing an independent appeals and advocacy process, and assuring health care in communities beyond "any willing provider" laws.

Glen Provost, J.D., M.P.H.
Vice President for Health Policy and Planning
Texas Tech University Health Sciences Center

That the elderly population is the fastest growing in the United States is no longer news. Impressive statistics documenting this fact appear frequently in the electronic and print media. In many areas Texas tends to buck national trends, but with regard to the aging of its population, we are running with the pack. The total population of Texas is approaching 20 million and almost 3 million of our residents are over 60 years of age.

Today, only 13% of U.S. residents are over the age of 65 yet they account for almost one third of national health care expenditures. This trend will intensify over the next 10 years as 75 million baby boomers born between 1946 and 1965 begin to reach age 65. The increasing need for health services by older adults will strain federal and state budgets as well as family finances, and the quality of life for aging citizens and their families could be profoundly affected.

Older Texans appear to have a particular affinity for small towns and rural areas. Statistics from the Texas Department of Aging, indicate that while 82% of Texans currently reside in urban areas of the state, almost 30% of people over age 65 live in small towns and rural areas. The elderly cite a variety of reasons for this fondness including: generally lower living costs, less crime, and reduced automobile traffic and pollution. The desirability of rural, small town living is tempered, however, by the lack of easily accessible health care services, a shortcoming of particular importance to the elderly. According to the Texas Center for Rural Health Initiatives, almost 90% of rural counties in Texas are considered to medically underserved. Of the 144 Texas counties designated by the federal government as health professional shortage areas, 117 are rural. Fifty-six rural Texas counties have no hospital and 67 rural counties have two or fewer physicians. Of those counties, 24 have no physicians.

As these data indicate, the percentage growth of the elderly rural population of Texas is outpacing its urban counterpart. The elderly face an increased need to access health services that - if they reside in rural Texas - will often not be available to them within reasonable proximity of their homes. The elderly experience an increase in chronic and acute health problems as they advance in age, a problem that is often exacerbated by the fact that as they age the elderly also tend to become less mobile. Therefore, their ability to access health services tends to decrease as their need for those services increases.

Much of the public policy debate currently raging in Washington and in many state capitals, centers on the viability of Medicare and Medicaid programs and the search for ways to shore up those programs to insure their ability to continue to address the needs of the aging population. Unfortunately, except among those who comprise the relatively small public health community, precious little public policy discussion is focused on population based prevention or non-financial barriers faced by the elderly in their efforts to access health services. Yet, unless we as a nation are prepared to support and live with a truly gargantuan shift in resources from other public programs into health care for the elderly, it is imperative that much greater attention be given to improving the elderly’s access to health care and to the expansion of prevention programs. Doing so would represent a marked departure from current practice. Greater attention to access and prevention will not of itself insulate against the coming explosion in health care needs of the elderly, but it may help to cushion the blow.

Fortunately, there are prevention steps that can be taken in fairly short order that are not particularly resource intensive. For example, there is growing evidence of the important preventive value to the elderly of various types of exercise, including previously shunned anaerobic activities like weightlifting. Also, it is widely understood that diet and nutrition can be of appreciable benefit to the elderly in forestalling a wide variety of health woes. There are numerous other population based programs known to be especially beneficial to the elderly. Yet, the amount of funding, both public and private, expended in these areas is miniscule as compared to health care expenditures. Not only does prevention receive little of our resources, prevention rarely has a prominent seat at the table during the national public policy debates on how to deal with health concerns of the elderly. That simply must change if we are to have any reasonable chance of adequately responding to this growing problem.

It is also important to recognize that, at least for the rural elderly, simply increasing financial resources will not alone resolve the problem of lack of access to health care. An elderly resident in a rural community who is provided with sufficient funds to pay his or her doctor isn’t helped very much if there is no doctor available to provide the medical care they need and for which they might be able to pay. It is highly doubtful that even the most generous federal or state health care programs now being considered would pay for such things as the wages lost by a son or daughter who finds it necessary to take off work to drive an elder parent to health care facilities in the next town or county, a distance that in many parts of Texas routinely exceeds 75 miles.

The rapid advances in telemedicine technology and the growth of so-called mid-level health practitioners are two subjects that should be carefully considered for their potential for improving access of the rural elderly to health care. Texas Tech University Health Sciences Center has utilized telemedicine extensively in the correctional health care setting, and has shown it to be medically efficacious. Currently, telemedicine’s cost effectiveness is being evaluated in both correctional and rural settings. Experience has shown that it is very difficult for remote, rural communities to recruit and retain physicians. Many simply cannot provide sufficient financial support for a full time physician. Therefore, it may be that many of these communities will have to accept nurse practitioners, physician assistants, and even pharmacists as front line primary health care resources. When provided with consultative access to primary care and specialty care physicians through telemedicine, these mid-level health care professionals can be very effective in meeting many of the health care needs of the elderly and others living in rural areas.

It is obvious that the current health care system is not responding to the health care needs of rural residents, a fact that is particularly troublesome for elderly rural residents. Therefore, it is essential that some "outside the box" thinking be applied to this subject. Not doing so will likely result in the current situation only getting worse.

Mary R. Anderlik, J.D., Ph.D.
Research Professor
Health Law & Policy Institute
University of Houston

The Americans with Disabilities Act (ADA) defines "disability" as a physical or mental impairment that substantially limits one or more major life activities, or a record of such an impairment, or being regarded as having such an impairment. As a social category, disability is unlike race because its boundaries are permeable. All are potential members of this minority. Like race, disability continues to be a locus for social disadvantage — despite passage of civil rights laws such as the ADA. This is apparent in the area of health care, at a number of levels.

Lack of Insurance and Inadequate Insurance

According to the Census Bureau, at the end of 1994 about 54 million Americans or 20.6% of the population had some level of disability; about 26 million had severe disabilities. Due to medical underwriting, people with disabilities often have trouble obtaining any health insurance. Even those who have insurance are scarcely secure. In a 1998 National Organization on Disability/Harris poll, one in five adults with a disability reported not getting needed medical care on at least one occasion during the past year, compared to one in ten adults without a disability. Of those who had health insurance, one in three reported a need for services that were not covered. Particular conditions such as HIV/AIDS or mental illness may be singled out for inferior coverage, and restrictive definitions of medical necessity may exclude interventions that slow deterioration rather than restore function. System-wide biases favor acute over chronic care and institutional over community- or home-based services.

Legislation enacted or under consideration at the federal and state levels addresses health insurance coverage for people with disabilities making the transition to work, discrimination based on health status, and parity in mental health coverage. The ADA also has been used to challenge the bias in favor of institutional care, but gaps remain and victories may be fleeting. (The Supreme Court is considering the Olmstead case, which concerns the ADA’s community integration mandate, this term.)

Physical and Communication Barriers

People with disabilities continue to encounter physical and communication barriers in health care settings. Difficulties range from inaccessible offices to examination tables that cannot be adjusted to accommodate people with mobility impairments to information in inaccessible formats. Some recent cases reveal the scope of the problem. In a 1998 settlement agreement in Anderson v. Department of Public Welfare, the Pennsylvania Department of Public Welfare agreed to inspect the offices of providers participating in the state’s Medicaid managed care program and communicate with those who were not ADA-compliant and to arrange for providers to supply informational materials in alternative formats such as Braille, large print or audiotape. The consent agreement in Connecticut Association of the Deaf v. Middlesex Memorial Hospital commits a group of hospitals to work through the state hospital association to contract for 24-hour sign language and oral interpreter services, place TTY’s next to public phones, modify patient rooms for portable TTY’s and closed captioning decoders, and provide extensive staff training.

Discrimination by Providers and Lack of Expertise

Although particular forms of medical treatment may be inappropriate for particular individuals, people with disabilities are sometimes denied treatment on the basis of unfounded fears and stereotypes. See, e.g., Glanz v. Vernick, 750 F. Supp. 39 (D. Mass. 1990) (person with HIV refused elective ear surgery). In 1996, after a two-year battle, Sandra Jensen became the first person with Down syndrome to undergo a heart-lung transplant. Through her persistence, she forced an individual evaluation that established her suitability for transplant.

Outright refusal of treatment is complemented by undertreatment. People with disabilities may have difficulty finding providers trained to meet their specific health care needs. The providers they find may skimp on referrals and other services in an effort to contain costs or encourage them to go away. Plaintiffs in a case currently being litigated in Texas allege that they were forced to endure long waits and denials of care while nondisabled patients received care, and that their HMO’s financial arrangements made the disabled more costly to clinics leading to discrimination designed to force these patients to obtain services elsewhere. The judge in the case recently denied the defendants’ motion to dismiss the plaintiffs’ claims under the ADA. See Zamora-Quezada v. HealthTexas Medical Group of San Antonio, 34 F.Supp.2d 433 (W.D. Tex. 1998).

A lack of understanding on the part of health professionals, as well as perverse incentives, may underlie discrimination. In the February 17, 1999 issue of Journal of the American Medical Association, Carol Gill, an assistant professor at the University of Illinois at Chicago, describes her encounter with a physician fixated on Gill’s disability. This physician repeatedly expressed her amazement at Gill’s happiness given her disability, rather than addressing the problem that caused Gill to seek medical attention. Gill and others in the fields of rehabilitation and disability studies believe that disability must be included in the curriculum if attitudes are to change. The University of Pennsylvania School of Medicine has piloted an innovative course with didactic, interactive, and experiential components (e.g., pairs of students spend 24 hours in the roles of a person with a serious mobility impairment and that person’s caregiver).

The objective must be to improve health care for people with disabilities without losing sight of the dangers of medicalization and stereotyping. As Sara Watson notes: "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." Sara D. Wilson, "An Alliance at Risk: The Disability Movement and Health Care Reform," The American Prospect, no. 12 (Winter, 1993). Some people with disabilities are sick; many are not. All need to be treated as individuals who merit respect and consideration of a range of personal attributes in their encounters with the health care system.

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