EXECUTIVE SUMMARY

During the past twenty-five years the nation's health care system has undergone tremendous growth in resource capacity, sophistication of medical technology, and insurance coverage of the formerly uninsured. The health care system has achieved major successes: Americans are living longer, infant mortality has dropped, and even such chronic diseases as hypertension are declining. But as the health system has grown, paradoxes have emerged and gaps in access to care have actually widened. These paradoxes have left large numbers of people without access to appropriate health care either because they lack insurance, live in communities without sufficient health resources, have special needs not met by traditional medical care, or face other barriers such as race, language, or culture. As Lisbeth Schorr notes, "The way health care is organized and paid for in the United States has produced many phenomenal medical achievements but . . . within the overall success story lie hidden failures."

Financing reforms can contribute significantly to elimination of barriers to adequate health care. However, financing does not obviate the need for delivery programs. The purpose of this paper is to discuss the service delivery component of a comprehensive approach to ensure access to care and improved health status for underserved populations. The paper focuses on access to primary care—that is, first line outpatient services provided in an office or clinic by a physician

• Report prepared by Bonnie Lefkowitz and Judy Rodgers, Bureau of Health Care Delivery and Assistance, Health Resources and Services Administration, U.S. Public Health Service, March 1990.

Points of view or opinions expressed in this document are those of the authors and do not necessarily represent the official position or policies of the U.S. Department of Health and Human Services.

The authors wish to acknowledge the research assistance of Irene Buskin, Norma Campbell, and Lynn Spector.

or midlevel practitioner. It also argues for the provision of a wide range of facilitating services such as community outreach, case-management of secondary and tertiary medical care, and integration of traditional medical services with health, social, and welfare services.

This paper describes barriers to the receipt of appropriate primary care, explains ways in which specific population subgroups experience these barriers, defines and evaluates the effectiveness of existing primary care service delivery programs, and finally, proposes a framework for future reform.

Barriers to Care. Nearly 32 million Americans are uninsured and many more are underinsured. In addition to financial barriers, nonfinancial barriers still prevent many people from receiving effective primary care. Specifically, 33 million persons live in Federally designated Health Manpower Shortage Areas; 16 million in isolated rural communities and 17 million in disadvantaged urban areas, where there is a dearth of health care facilities, personnel, and other resources needed for the routine provision of services at the local level. An estimated 26 million persons do not have a regular private sector primary care physician. Additionally, even if facilities and services are available, they are often fragmented (i.e., offered through multiple organizations in various locations) and poorly coordinated. Finally, there are language, racial, educational, cultural, and attitudinal differences which impose special barriers to effective delivery of health and social services.

Groups Affected by These Barriers. There are numerous population subgroups that experience barriers to the receipt of appropriate primary health care. A disproportionate share of those facing these barriers are poor and minority. Additional special population

groups that experience particular hurdles to the receipt of care include, among others, high risk pregnant women and their infants, migrant farm workers, individuals with HIV infections, substance abusers, and the elderly. Of course many individuals fall into more than one of these population groups.

Existing Comprehensive Primary Care Programs. There are several types of subsidized service delivery programs that serve those individuals who lack a regular private sector primary care physician. At the Federal level, the Bureau of Health Care Delivery and Assistance is responsible for programs which bring community-based primary health care to approximately six million poor and underserved persons through grants and manpower recruitment. The Indian Health Service provides primary care services through a variety of urban and rural programs to over one million persons per year. Two Federal Grant programs (the Maternal and Child Health Services Block Grant, and the Preventive Health and Health Services Block Grant) help support primary care services to underserved populations, usually provided through State and local health departments. Approximately 25 percent of local health departments have gone beyond offering discrete single health services, and now provide primary care. Hospitals are the only family doctor in many areas, in that underserved persons often rely on hospital emergency rooms or organized outpatient departments as their principal source of primary care. School-based health centers offer primary health care, through 150 health centers operating in junior and senior high schools in both urban and rural areas. Finally, the private sector helps to serve vulnerable populations by subsidizing over 500 private, non-publicly funded health centers throughout the country.

Effectiveness of Existing Programs. A number of studies have shown that existing primary care programs have made significant inroads in reducing barriers to the receipt of appropriate health care, and improving health status and outcome. For example, the effectiveness of community-based health centers is evidenced by the fact that Medicaid patients who use these centers have lower hospital admission rates, shorter lengths of stay, and make less inappropriate use of emergency rooms than similar patients who use Medicaid but not a community health center. Similarly, health centers have had a beneficial effect on both white and black infant mortality rates, have reduced rheumatic fever and untreated middle ear infections, and have brought about an increase in the number of immunized children. Unfortunately, most of the research in this area was conducted in the 1970s and early 1980s.

Future Directions. Service delivery programs effectively target their services to underserved, vulnerable populations by offering an optimal continuum of activities. First, they ensure the presence of providers and facilities and offer comprehensive primary medical care. Second, they provide case management, and where possible, co-location of a broad range of health, welfare, and other support services. Third, they include outreach and other social services which foster health prevention and promotion behavior, encourage early entry into the health and social service system, and encourage at-risk populations to maintain participation in care. Examples of such services include health education programs, transportation and home visiting, on-site day care, and bilingual services. Finally, effective programs are community-based and community-responsive, addressing unique local circumstances and health care problems.

Expanding health care insurance coverage should reinforce-not replace-support for primary care delivery systems. Depending on their design, financing reforms can increase the capacity of direct delivery providers. If insurance covers patients previously uninsured or underinsured, delivery systems can then use their State, Federal or private funds to develop additional facilities, to expand types of services and the number of patients served at existing facilities, and to provide additional outreach and case management services. Thus insurance and service delivery approaches to ensuring access to care are synergistic.

THE PROBLEM-BARRIERS TO CARE

Barriers to the receipt of primary care are varied, but can generally be categorized into the groups described below. It is important to note that many individuals who lack access to appropriate health care have problems that fall into more than one of these categories.

Financial Barriers

While this paper emphasizes service delivery issues, these problems are exacerbated by financial barriers to access which limit the care available to poor people, and place added burdens on the service delivery programs that are available to this population. Indeed, 31.8 million Americans lacked health insurance, either public or private, in 1987 (the most recent year for which data is available).1 While some are young and

1 Bureau of the Census, Current Population Survey (Washington, D.C.: March 1988).

healthy (e.g., college graduates who have not yet replaced their parents' health insurance with their own), most are poor. Additionally, many other persons are underinsured that is, their public or private insurance does not cover important services, especially preventive and primary care. For example, Medicare, which requires 20 percent patient payment for outpatient services, excludes preventive services such as Pap smears.2

Capacity/Resource Barriers

As discussed below, there are many people who lack access due to insufficient facilities, personnel, and other resources needed for the routine provision of services at the local level. In certain geographic areas-mainly rural and inner city areas, there is a dearth of health care resources and personnel. In 1988, 33 million people (17 million urban and 16 million rural) were living in Health Manpower Shortage Areas (HMSAs). 3 Not all of these individuals experience access problems, but there is a great deal of overlap with the estimated 26 million persons who lack a regular private sector primary care physician.*

Isolated Rural Areas-Rural residents lag behind the rest of the country in access to health care. There are roughly one-half as many physicians in rural areas as there are in urban areas-97.9 vs. 174.7 per 100,000 population. Rural counties with a population of less than 10,000 had only 53 physicians per 100,000 population in 1985, and in counties with fewer than 2,500, this ratio fell to 29.9.5 Physician availability in rural areas is expected to worsen even further in the next few years due to an expected 25 percent rate of physician retirement and severe cutbacks in the National Health Service Corps Scholarships program, which supplies physicians to HMSAS.6 The Nation has 1,955 HMSAS (areas with a primary care physician to population ratio of less than 1 to 3,000), and a total of 4,224 primary care physicians is needed to bring all these areas up to the designation threshold. In 1990 there are a total of approximately 1,000 obligated NHSC physicians, of which 120 are newly available scholars. This contrasts dramatically with 1986, when

2 The Bureau of Health Care Delivery and Assistance, Health Resources and Services Administration, U.S. Public Health Service, "The Bureau of Health Care Delivery and Assistance's Unique Role in Primary Care," (Washington, D.C.: December 1988), 9.

The Bureau of Health Care Delivery and Assistance, "The Bureau's Unique Role," 9.

L.H. Aiken, C.E. Lewis, J. Craig, R.C. Mendenhall, R.J. Blendon, and D.E. Rogers, "The Contribution of Specialists to the Delivery of Primary Care: A New Perspective," New England Journal of Medicine (June 4, 1979): 1363-1370.

5 David A. Kindig, and Hormoz Movassaghi, "The Adequacy of Physician Supply in Small Rural Counties," Health Affairs 8 (2) (Summer 1989): 66.

Larry S. Patton, The Rural Health Challenge, Staff Report to the Special Committee on Aging, U.S. Senate (Washington, D.C.: Government Printing Office, 1988), 52-53.

there were 2,600 scholarship obligated physicians of which 1,400 were newly obligated. Isolation, overwork, lack of professional contact and low economic viability all contribute to difficulties in attracting new providers to rural areas voluntarily.

Also, beyond personnel issues, there are other problems related to low geographic density, such as insufficient population to support facilities and modern technology. The closure or cutback of many rural hospitals affects the availability of primary care directly as well as the ability of rural areas to attract providers.

Disadvantaged Urban Areas-The 17 million urban residents living in HMSAS are primarily in the inner cities. The overall adequate or excess supply of physicians in urban regions masks problems in poor, often minority areas within them. In ten cities the number of office-based physicians per 100,000 population in poor areas declined from 136 in 1963 to 127 in 1980, while in non-poverty areas their number grew from 131 to 150.7

Reasons that physicians may not practice in these areas include concerns about inadequate facilities and, perhaps, a reluctance to serve the poor and minority populations concentrated there. Because of the high percentage of Medicaid and uninsured patients in inner cities, it also may be more difficult to maintain an economically viable practice in these areas. Other providers may locate their practices in urban areas but are not necessarily willing to treat the poor and minority groups. 8

Operational/Organizational Barriers

Even if the physical/structural resources are in place, underserved populations face barriers related to the operation and organization of services-such as inadequate transportation to primary care sites, difficulties in arranging child care, unpleasant surroundings, long waiting times, inconvenient hours of operation (causing excessive time lost from work), and lack of integration among the various programs serving high-risk, hard to reach population groups.9

7 The Bureau of Health Care Delivery and Assistance, "The Bureau's Unique Role," 10.

President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Securing Access to Health Care: The Ethical Implications of Differences in Availability of Health Services, Vol. 1: Report (Washington, D.C.: Government Printing Office, March 1983), 83-86. Institute of Medicine, Prenatal Care: Reaching Mothers, Reaching Infants, Summary and Recommendations (Washington, D.C.: National Academy Press), 6-7.

Case management of primary, specialty and inpatient services combined with other social and support services can make the health care system more effective for everyone but are particularly important for the poor and underserved. Among the services needed are those relating to eligibility determinations for health financing, mental health, substance abuse, runaway youth, infant day care, child abuse and neglect, welfare programs, nutrition, family planning, housing, transportation, labor practices, correctional programs, and legal services. Although these services are typically available through multiple organizations, local agencies often lack adequate personnel, materials, or knowledge of other programs to make referrals or other coordination efforts, such as arranging for co-location of services. The problem is exacerbated in rural areas, where the physical facilities that house necessary services are geographically dispersed, thus complicating integration of service delivery. In addition, a multiplicity of eligibility requirements, and multiple sites for needs-determination procedures complicate the ability to access services. Finally, rivalries among different disciplines and organizations can fragment provider responsibility. This inability to integrate services means that those least able to do so must grapple with the most "red tape" and barriers to receiving care. 10

Cultural/Social Barriers

Oftentimes, language, racial, educational, behavioral, environmental and attitudinal differences impose special barriers to effective delivery of health and social services. Health care professionals may lack necessary skills, such as language training, health education, and training in the provision of preventive services, or may be insensitive to cultural differences.11 For many population groups, individual, family, and community behavior patterns can affect the pursuit of appropriate care in a timely fashion. As an example, one-third of the women in the U.S. do not receive adequate prenatal care, of which the highest proportion are black, Hispanic, poorly educated, low-income, unmarried, and/or teenaged.12 Fear or lack of knowledge is often a barrier to care for these women, who are twice as likely as those who receive prenatal care to have a low-birth weight baby.13 Fi

10 William White, consultant to the Bureau of Health Care Delivery and Assistance, Department of Health and Human Services, "Draft Report prepared for the Subcommittee on Community Based Health and Social Services, White House Task Force on Infant Mortality" (1989), 9.

11 William Gorham, Delivery of Health Services for the Poor, U.S. Department of Health and Human Services (Washington, D.C.: December, 1967), 257.

12 Gold, Kenney, and Singh, Blessed Events and the Bottom Line: Financing Maternity Care in the United States (New York: The Alan Guttmacher Institute, 1987), 14-16.

13 Gold, Kenney, and Singh, Blessed Events, 14-16.

nally, exposure to environmental toxins or hazards, such as lead, also influence pregnancy and other health outcomes. 14

HOW GROUPS ARE AFFECTED BY THESE BARRIERS

There are numerous population subgroups that experience barriers to the receipt of care. A disproportionate share of those facing the barriers described above are poor and minority. In addition, there are smaller, frequently overlapping subgroups who are disproportionately poor or minority and who also face their own unique hurdles to accessible care.

The Poor

The Robert Wood Johnson Foundation found in a recent study that lack of accessible care is largely a problem of the poor. Specifically, access to health care showed marked improvement from the 1950s to 1982, when the gap between rich and poor was closing. Unfortunately, since 1982 this gap has widened, reducing access to care among the poor. For example, the adult poor below the age of 65 had 30 percent fewer ambulatory visits per person in 1986 than in 1982. The widening gap is due to financial barriers (i.e., increasing lack of health insurance) as well as nonfinancial barriers (e.g., maldistribution of resources, logistical and lifestyle barriers). 15 The impact of the nonfinancial barriers is noted by a recent study showing that among insured adults, the poor are 4.4 times as likely as those who are not poor to have needed medical services but not to have received them. 16

There are approximately 32 million Americans with incomes below the poverty line. 17 The poor are less likely than the non-poor to have private medical coverage or medical coverage through their workplace. One-half of the 31.8 million people who lack health insurance have incomes below 150 percent of the poverty level. Populations in this group include pregnant women and infants, children, and other uninsured per

14 Department of Health and Human Services, "Facts on Infant Mortality and Access to Prenatal Care" (unpublished information distributed on Child Health Day, Washington D.C.: 1989).

15 The Bureau of Health Care Delivery and Assistance, "The Bureau's Unique Role," 8.

16 Rodney A. Hayward, M.D., Martin F. Shapiro, M.D., Ph.D., Howard E. Freeman, Ph.D., and Christopher R. Corey, M.A., “Inequities in Health Services Among Insured Americans," New England Journal of Medicine (June 9, 1988): 1507.

17 Jane Koppelman, National Health Policy Forum, The George Washington University, Poverty and the Underclass: Priorities for the Next Decade, Issue Brief No. 511 (Washington, D.C.: 1989), 2.

sons such as the working poor, who are not eligible for Medicaid but have no private insurance. Nationwide, Medicaid reaches fewer than half the poor, and even fewer of the employed poor. In fact, fear of losing Medicaid's protection may be an incentive to remain unemployed, thus perpetuating the poverty cycle. 18

Minorities

There are 60 million members of minority groups (blacks, Hispanics, Native Americans, and Asian Americans), a disproportionate percentage of whom are low income. Thus, they are likely to face access problems related to poverty, as well as additional barriers arising from location in the inner city, discrimination, and other socio-economic and cultural factors.19 For example, researchers Janet Mitchell and Rachel Shurman found that, controlling for other factors, obstetricians were less likely to participate in Medicaid in counties with high minority populations. The same was not true for surgeons or general practitioners, causing speculation as to whether it was the prospect of continuing and frequent contact with patients that led to the difference. Mitchell and Shurman also noted that many doctors have expressed a willingness to treat the poor in a public clinic or outpatient department for a few hours a week, but not in their own offices, where their private patients might be uncomfortable. 20

The impact of these non-financial barriers on minority populations is demonstrated by the fact that among insured, working age adults, blacks are 1.7 times as likely as whites to need medical services but not to receive them. Similarly, Hispanics with a medical illness are 2.2 times as likely as whites not to have seen a physician within the past year. 21

As a result of financial as well as nonfinancial barriers to care, there are significant gaps in health status between minorities and the rest of the nation. Specifically, in virtually every measure of health status (e.g. life expectancy, death rate, infant mortality rate, and the prevalence of coronary and cerebrovascular disease), minorities, particularly blacks and Hispanics, are significantly worse off than whites. 22

18 The Bureau of Health Care Delivery and Assistance, "The Bureau's Unique Role," 9.

19 President's Commission Report, 83-86.

20 Janet B. Mitchell and Rachel Shurman, "Access to Private Obstetrics/ Gynecology Services under Medicaid," Medical Care, 22 (11) (November 1984): 1034.

21 Hayward, Shapiro, Freeman, and Corey, "Inequities in Health Services," 1507.

22 Office of Disease Prevention and Health Promotion, U.S. Public Health Service, U.S. Department of Health and Human Services, Disease Prevention/ Health Promotion: The Facts, (Palo Alto, Calif.: Bull Publishing Company, 1987), 198, 202.

High Risk Pregnant Women and Their Infants

In 1988, the provisional infant mortality rate in the United States was 9.9 deaths within the first year per 1,000 live births. The rate for black infants was nearly twice that. In 1987 the black infant mortality rate (17.9 per 1,000) was at the same level as the white rate had been 25 years earlier. Although the U.S. rate is better than ever, 21 nations have lower rates. 23

There has been a troubling slowdown in the rate of decline in infant mortality observed in the 1980s. During the 1970s, the rate declined by 4.9 percent per year for whites and 4.1 percent per year for blacks. In 1987, the black infant mortality rate declined by less than 1 percent for the third year in a row. The white infant mortality rate declined by 3.6 percent. 24 Worse yet, in 1987, the black fetal death rate increased by 2.7 percent, the first increase since the 1960s. White fetal death rates decreased by only 1.6 percent.25

The rate of progress has slowed primarily because factors associated with increased risk of infant death, such as low birth weight and lack of access to prenatal care, have shown no improvement in recent years. 26 The importance of prenatal care is demonstrated by the fact that women who get insufficient prenatal care have double the risk of having a low birth weight baby, and give birth to babies that are three times more likely to die in infancy.27 In 1980, low birthweight infants represented less than seven percent of all newborns in the United States, but accounted for sixty percent of all babies who died in infancy.28

Many pregnant women experience a combination of the financial, organizational, and cultural barriers described above. They are particularly affected by lack of providers, exacerbated by the fact that some physicians are no longer practicing obstetrics, in part due to the cost of liability insurance. Lack of coordination among health and social services also has a significant impact on low-income pregnant women, who are illprepared to visit numerous locations in search of needed services. For example, services under the Special Supplemental Food Program for Women, Infants, and Children (WIC) are often not provided in conjunction with prenatal care.

23 White House Task Force on Infant Mortality, Draft Report, "Infant Mortality in the United States," (Washington, D.C.: October 29, 1989), 3. 24 White House Task Force, Draft Report, 3.

26 White House Task Force, Draft Report, 4. 26 White House Task Force, Draft Report, 3.

27 Office of Disease Prevention and Health Promotion, The Facts, 134.

28 Congress of the United States, Office of Technology Assessment, Healthy Children: Investing in the Future, OTA-H-345 (Washington, D.C.: Government Printing Office, February 1988), 6.