Doug Campos-Outcalt, M.D., M.P.A.
Associate Professor of Family Medicine
University of Arizona, College of Medicine
Robert Fernandez, D.O., M.P.H.
Dean, Chicago College of Osteopathic Medicine
Midwestern University
Walter Hollow, M.D., M.S.
Director, Native American Center of Excellence
University of Washington, School of Medicine
Sally Lundeen, Ph.D., R.N.
Associate Professor, School of Nursing
University of Wisconsin-Milwaukee
Kathleen Nelson, M.D.
Professor and Director, Division of General Pediatrics
University of Alabama at Birmingham, School of Medicine
Barbara Schuster, M.D.
Associate Professor, Department of Medicine, University of Rochester
Mary K. Stillwell
Chief, Recruitment Branch, NHSC
Health Resources and Services Administration
Robert Wildman, M.A., P.A.-C.
Associate Professor, Physician Assistant Program
University of Kentucky, College of Allied Health Professions
The health care debate is focused on achieving universal access through a restructured payment system. Final acceptance will be dependent on meeting the needs of the employed and educated. The special needs of vulnerable populations, though included in the Health Security Act, are less likely to be given priority.
Vulnerable populations are groups who because of physical disabilities, mental disabilities, cultural differences, geographic separation, or limited economic resources, are unable to successfully integrate into the mainstream health care delivery system. Vulnerable populations include, but are not limited to, the urban poor (especially ethnic and racial minorities), Native Americans, rural poor, chronically disabled children and adults, frail elderly, homeless and undocumented.
Three barriers to health care are shared by all vulnerable populations; inaccessibility of care, fragmentation of care, and cultural insensitivity on the part of care providers. In fact, the ability of vulnerable populations to access culturally competent care will in great measure depend on our collective ability to develop integrated, coordinated systems of health and human services.
Lack of Access
Access to health care in the current debate is often equated with insurance coverage for medical care. Many who have coverage, including those who live in the shadow of major medical centers, do not have real access to primary health care services. The result has been poor health status which can be demonstrated by selected indicators.
In spite of spending more per capita on health care than any other country in the world, the United States has an infant mortality rate and life expectancy rate that rank behind most developed countries. Some areas of the country have infant mortality rates which resemble those of developing nations. During the past decade there has been an increasing number of unintended births, a disproportionate rate of preventable hospitalizations, low screening rates for detection of treatable illnesses, and low dental care utilization.
Barriers to health care for many Hispanic populations include language, culture, education and poverty. A lack of bilingual health care providers and on-site interpreters in many facilities has led to the common practice of requesting patients to provide their own interpreter. The use of a child, spouse, relative, or friend for translation may prevent the individual from fully discussing health problems, both from a sense of modesty and a desire to protect the confidential nature of many health problems. The use of a child as an interpreter may also subvert family discipline due to the role reversal between parent and child.
Geographic isolation and poverty are the major causes of the access problem for Native Americans and Rural Americans. Geographic isolation also increases the difficulty of attracting and retaining health care professionals. A high physician turnover in the Indian Health Service is one cause of patient dissatisfaction, lack of continuity of care and poor health status of Native Americans.
Three percent of American children have handicapping chronic illnesses and another 2% have developmental disabilities. The majority of these children are cared for at home and need parental involvement for coordination and multiple health care services and for transportation. This often results in a limitation of employment opportunities for the parents, a significant financial sacrifice. In similar ways the frail elderly who reside at home may be dependent on family to provide transportation to health care services. Many elderly are without family and have decreased access to health care facilities due to a lack of transportation, decreased mobility and communication problems due to loss of vision or hearing.
An estimated two million homeless men, women and children live on the streets of our nation. Completely disenfranchised from society, they have little ability to seek health care in traditional ways. Homeless children are inadequately immunized and display developmental delays, malnourishment and poor dentition. They are often victims of trauma and physical abuse. One-third of homeless adults are believed to have an alcohol or other substance abuse problem while 25% have a psychiatric disorder.
The number of undocumented aliens in the United States is unknown, but is probably several million. Many have no health insurance and they cannot participate in government programs. They generally depend on community health centers and local city or county health systems for health care, though a sizeable minority go to private physicians or return to Mexico for health care. The undocumented are more likely than others to use an emergency room for care, to wait until illnesses are more advanced before seeking care, and to avoid preventive care. They are concentrated in certain geographic areas, particularly the sunbelt and border states and large metropolitan areas in the north. These states and local governments bear the brunt of costs of providing health services to this population. It is doubtful that health care could be denied to the undocumented, especially emergency and obstetric care, due to legal, liability and ethical concerns.
Reimbursement policies are another barrier to care for all vulnerable populations because the extra time needed to provide adequate care is not compensated. Using an interpreter increases the amount of time needed to obtain a history and to provide therapeutic and diagnostic information. The disabled require a myriad of services and coordination of these services requires increased provider attention. The elderly often require increased time for history taking and examination as well as to prescribe, monitor and explain multiple medications. Additional time is needed to care for the undocumented due to the difficulties inherent in discontinuous care and presentation with more advanced illness. When patients do not have financial resources providers have to spend time considering and searching for alternative sources of diagnostic and therapeutic services. Unless providers are reimbursed for their time, they may avoid caring for patients from vulnerable populations.
Fragmentation of Care
Perhaps the most ineffective and costly element of the currently health care system is the fragmentation of service delivery. This feature is most obvious in the safety net services designed to assist the most vulnerable populations. These services are usually focused on a specific problem (substance abuse, adolescent pregnancy, etc.) or a particular aggregate (children under 4 years, pregnant women, elderly, etc.). In neither instance are services based on a comprehensive community assessment or consistent with a holistic, family-focused perspective. Funding and administrative systems have followed this model perpetuating the fragmented and duplicative nature of service delivery.
Fragmentation of health care services is a recurrent problem for all vulnerable populations and is illustrated by the first case study. The second case study illustrates a coordinated model which improves service delivery and health outcomes.
Solutions to the fragmentation of services will require increased collaboration across disciplines and organizational structures. Such vertical and horizontal integration could allow the development of integrated systems of community health care delivery. Incentives for collaboration and integration are not built into the current system. To develop an integrated system a shift in thinking about the nature of service delivery, organization and funding will need to occur.
Lack of Cultural Competence
A key to the provision of quality health care to vulnerable populations is provider sensitivity to their cultures. The health care provider needs to be attuned to varying interpretations of language, non-verbal interactions, and patient and provider responsibility. The epidemiology of diseases varies between populations as does the individual interpretation and description of specific symptoms. The following is an example for Native American populations.
Western practitioners caring for Native American patients are often unaware of the use of Traditional Indian Medicine by these patients. Seventy percent of reservation-based and forty percent of urban-based Indians use traditional practitioners for simultaneous health care. Indians often mistrust non-Indian physician providers and there is a shortage of Indian physicians to provide services. This leads to a deficiency of role models for Native American medical students and residents and hinders the recruitment of Indian students into the health professions.
Several factors are responsible for the high practitioner turnover of providers serving the Indian community. Most lack knowledge of Indian history, culture and specific health issues. No orientation to Indian health care is provided to those entering the Indian Health Service. The provider often finds him/herself geographically isolated and they are frequently inadequately prepared for practice in isolated settings. At the present time, there is no required training that is designed to provide insight and instruction on cultural variation for those health care providers assigned to the Indian Health Service in NHSC sites.
Similar problems occur with providers who begin practice in poor rural environments such as Appalachia or a poor urban community such as downtown Detroit. Regardless of the location, cultural mismatch between provider and patient/community often results in provider burnout, poor retention, community dissatisfaction with services, and low service utilization.
Recommendations
Under the leadership of the Department of Health and Human Services a number of changes can be made to improve access to, and provision of, quality health care to vulnerable populations that is comprehensive, coordinated and culturally competent. These changes can be made with or without congressionally-mandated health care reform. Our suggestions include the following:
Access:
Fragmentation:
Cultural Competence:
Case Study #1: Fragmented Care for Vulnerable Populations
The following case study highlights the need for basic changes in the organization, delivery, and funding of primary health care and health related services in the United States.
Maria, a pregnant 18-year-old mother of a toddler, presents at the Emergency Room stating that “I’ve been very tired for the past several months.” She is found to be 4 months pregnant and is referred to a local Welfare office to apply for Medicaid. Once qualified, she seeks out (with some difficulty) a physician who will see her. Three weeks have past. At the first prenatal appointment, she is given several pamphlets on good prenatal care and nutrition, told of prenatal classes offered evenings at the clinic, given a referral to the (WIC) site, told about a new prenatal care coordination program for which she is eligible once she completes an application form (provided) and is given an appointment for her next prenatal visit.
Since she cannot read well, she throws away the prenatal care coordination eligibility form and the patient information pamphlets. She is unable to return to the clinic for evening prenatal classes due to lack of transportation and child care. During the next few months, she misses three prenatal care appointments due to lack of transportation. Although she brings her toddler to the other visits, his lack of immunizations remains undetected because his pediatric provider and records are in another clinic.
After the delivery of her baby, Maria seeks to see her older child’s pediatrician who is taking no new Medicaid patients. She calls the public health department to schedule with the well baby clinic and the WIC program, but is dismayed to hear that they meet on different days of the week. Although she is referred to the local Planned Parenthood Clinic for family planning services, she doesn’t ever make an appointment.
She continues to a attend a parenting support group offered at the local neighborhood center where she receives the bulk of her social services support. She learns that there is a Headstart program for her older son located downtown, but she’ll have to go to a central intake agency to apply and then be placed on a waiting list. Although she receives consistent support from group members and staff to complete a G.E.D. course or seek job training, the only G.E.D. course is offered evenings at the high school in an “unfriendly” neighborhood where she fears for her safety and the Private Industry Council Job Employment Program requires application at a distant intake center. Neither seems feasible without affordable day care. She begins to feel “depressed and confused” about her life. She reports this at a clinic visit, she is referred to the mental health clinic for treatment as a “potential child abuser” at the county hospital complex some distance from her home.
Case study #2: Coordinated Delivery for Vulnerable Populations
Maria reports in her local parenting group that she is feeling “tired all the time.” After the class, the group leader introduces her to a Community Health Center (CHC) family nurse practitioner (FNP) who staffs a satellite nursing center at the neighborhood center (settlement house). She is seen immediately and determined to be 2 months pregnant. The FNP makes an appointment with the CHC prenatal care team and registers her for an on-site Spanish speaking prenatal education class and arranges for transportation to the CRC. She discusses the prenatal care coordination program with Maria and schedules her initial home visit appointment with a Spanish speaking nurse care coordinator.
During the prenatal period, Maria keeps both her prenatal care coordination and her prenatal visits. The nurse care coordinator and the CNMIMD prenatal team are in close contact on issues related to her care. Her toddler is registered with the CHC and able to receive EPSDT services from the FNP at the neighborhood center. These visits are coordinated with Maria’s parenting support classes. She is placed on a waiting list for Title XX day care offered at the neighborhood center for both her unborn infant and her toddler and her care coordinator discusses future employment and educational options with her.
After the birth of her baby, Maria continues to see the nurse care coordinator periodically to review her goals and progress and to modify her provider support team. She continues to see the FNP at the nursing center for family planning services, education, guidance and counseling around health lifestyles and well child visits in this neighborhood setting as well. When her child becomes ill she sees her physician/PA team at the CHC (members of the same multi-disciplinary primary care team as the neighborhood center based FNP.) Family dental services are also available at the CHC. She continues parenting classes and at one point is referred to the social worker at the neighborhood center for mental health counseling because she is “sometimes depressed and confused about my life.” The social work effectively deals with the crisis and encourages her to participate as a peer counselor for other teens in the center’s pregnancy prevention program (jointly funded developed and operated by the neighborhood center and the CHC.) Maria proves to be a natural mentor and receives accolades from her peers and center staff. Two years after the birth of her second child, Maria completes her G.E.D. in the program offered at the neighborhood center and with the assistance of the employment counselor on staff at the neighborhood center decides to apply to a health professional education program in the area.