Pediatric Annals

Community Pediatrics From the Federal Government's Perspective

Vince L Hutchins, MD, MPH

Abstract

While preparing this article, I realized that I haven't practiced pediatrics in the community for nearly 25 years - not since working in a Children and Youth project in Philadelphia during the closing years of the 1960s. And I haven't been a "fed" for close to 2 years. In the spirit of full disclosure, my federal perspective will be chiefly from the Title V or Maternal and Child Health Bureau view - die agency where I sat during my 20 + years in the federal government. Although I observed what was happening in surrounding and parallel programs, I was captive of the old bureaucratic saw, "Where you stand depends on where you sit."

SELECTED THEMESASSUES

TKe current federal view of most health issues is seen through the prism of health-care reform. The view has not always been clear.

Mental Health/Mental Retardation

In the spring of 1993 in Washington, DC at a National Health Policy Council Conference, a survey was conducted on possible Clinton health plan components.1 The majority of respondents (96.6%) believed mental health services are necessary in the benefits package. While the survey did not ask what mental health services or who should provide them, two thirds (67-8%) of the respondents felt the federal government should determine the limits of coverage but should not determine the providers. More than four fifths (86.4%) favored the increased use of allied health providers who would be granted expanded privileges and responsibilities.

The future of mental health services is one of the intense conversations occurring with health-care reform. The question of who on the health-care team wilt provide what reimbursed mental health services to whom is no more clear than is the equitable distribution of functions between child psychiatry and pediatrics. Resolution of these questions continues as a central concern of community pediatrics.

Over the years, there has been interesting, occasionally confrontational, dialogue about the roles and responsibilities of pediatricians versus child psychiatrists along the spectrum of services encompassing mental retardation, developmental problems and mental health.

In the mid-1950s, the Children's Bureau made four grants for special demonstrations of clinical services for the mentally retarded. By the 1960s, these four had expanded to a nationwide network of child development and evaluation clinics that set the stage for "early intervention." Through the years, approximately one third of children referred to these clinics as mentally retarded were found not to be mentally retarded, but were diagnosed as developmentally delayed due to a variety of physical or other handicapping conditions.

The approach of these clinics included management responsibility, a multidisciplinary team, and pediatrie direction. The focus on pediatrics was new. Traditionally, psychiatrists served as the medical directors of clinics for the mentally retarded. There were two reasons for putting clinics under the direction of pediatricians. First, pediatrie direction, a cornerstone of other maternal and child health programs, developed out of a need to look at the "whole child," rather than just one problem area. Second, most developmental problems in preschool-aged children usually come first to the attention of pediatricians. Within the philosophy of the child development and evaluation clinics, mental retardation was seen as a broad problem and beyond the management capability of a single discipline. The construction of the team to provide this multidisciplinary approach was based on two major considerations: 1 ) to include professionals who had die special skills that the primary physician lacked - and needed most - as backup in dealing with these children and their families, and 2) to include and coordinate the skills of professional personnel already in the Maternal and Child Health Bureau program delivery system.

Initially, these…

While preparing this article, I realized that I haven't practiced pediatrics in the community for nearly 25 years - not since working in a Children and Youth project in Philadelphia during the closing years of the 1960s. And I haven't been a "fed" for close to 2 years. In the spirit of full disclosure, my federal perspective will be chiefly from the Title V or Maternal and Child Health Bureau view - die agency where I sat during my 20 + years in the federal government. Although I observed what was happening in surrounding and parallel programs, I was captive of the old bureaucratic saw, "Where you stand depends on where you sit."

SELECTED THEMESASSUES

TKe current federal view of most health issues is seen through the prism of health-care reform. The view has not always been clear.

Mental Health/Mental Retardation

In the spring of 1993 in Washington, DC at a National Health Policy Council Conference, a survey was conducted on possible Clinton health plan components.1 The majority of respondents (96.6%) believed mental health services are necessary in the benefits package. While the survey did not ask what mental health services or who should provide them, two thirds (67-8%) of the respondents felt the federal government should determine the limits of coverage but should not determine the providers. More than four fifths (86.4%) favored the increased use of allied health providers who would be granted expanded privileges and responsibilities.

The future of mental health services is one of the intense conversations occurring with health-care reform. The question of who on the health-care team wilt provide what reimbursed mental health services to whom is no more clear than is the equitable distribution of functions between child psychiatry and pediatrics. Resolution of these questions continues as a central concern of community pediatrics.

Over the years, there has been interesting, occasionally confrontational, dialogue about the roles and responsibilities of pediatricians versus child psychiatrists along the spectrum of services encompassing mental retardation, developmental problems and mental health.

In the mid-1950s, the Children's Bureau made four grants for special demonstrations of clinical services for the mentally retarded. By the 1960s, these four had expanded to a nationwide network of child development and evaluation clinics that set the stage for "early intervention." Through the years, approximately one third of children referred to these clinics as mentally retarded were found not to be mentally retarded, but were diagnosed as developmentally delayed due to a variety of physical or other handicapping conditions.

The approach of these clinics included management responsibility, a multidisciplinary team, and pediatrie direction. The focus on pediatrics was new. Traditionally, psychiatrists served as the medical directors of clinics for the mentally retarded. There were two reasons for putting clinics under the direction of pediatricians. First, pediatrie direction, a cornerstone of other maternal and child health programs, developed out of a need to look at the "whole child," rather than just one problem area. Second, most developmental problems in preschool-aged children usually come first to the attention of pediatricians. Within the philosophy of the child development and evaluation clinics, mental retardation was seen as a broad problem and beyond the management capability of a single discipline. The construction of the team to provide this multidisciplinary approach was based on two major considerations: 1 ) to include professionals who had die special skills that the primary physician lacked - and needed most - as backup in dealing with these children and their families, and 2) to include and coordinate the skills of professional personnel already in the Maternal and Child Health Bureau program delivery system.

Initially, these teams included a pediatrician, a public health nursing consultant, a medical social worker; a clinical psychologist, a nutritionist, and speech and hearing consultants. As the programs developed, other professional disciplines were added to the teams.2

These mental health teams increased the demand for trained professionals. The late 1960s and early 1970s saw federal support of projects that trained at the interface between pediatrics and child psychiatry. While not altogether successful, significant programs were developed by Giulio Barbero at Hahnemann in Philadelphia, Helen Goftnan at California in San Francisco, and Al Solnit and Sally Provence at the Yale Child Study Unit. Interdisciplinary training of teams of health providers has continued as a federal priority through the University Affiliated Programs movement and the more recently established Maternal and Child Health Bureau's program in Behavioral Pediatrics. Children in need of mental health services, as well as children with chronic conditions, have been well served by these programs. Their interdisciplinary teams have provided an array of physical health and mental health services.

The questions for health-care reform remain acute and worrisome. Will similar mental health services be part of the benefits package? What services? What providers? What payment?

Projects

Certain categories of federally funded community projects and programs dating from the war on poverty in the mid-1960s were critical to the development of community pediatrics. Disadvantaged children, whether poor, near poor, or disadvantaged in other ways, benefited especially from these community programs. These programs introduced such concepts as responsibility for special populations, responsibility for populations defined by geographic boundaries, community outreach, replacing limited care with comprehensive care, replacing episodic care with continuity of care, and promoting health as well as caring for the sick.

With roots in South Africa, these community projects demonstrated that the two crucial differences between the existing "encounter care" model and comprehensive care were 1 ) the concept of a planned and supervised flow of services, and 2) die idea of completeness of services. The continuity and completeness of services achieved through a team of health professionals became the core characteristics of the comprehensive health-care team.3

Many of these projects, founded because of the actual and perceived inequities in services provision and employment practices of official agencies, nourished under sponsorship by other-than-official agencies, including community groups, schools, and teaching hospitals.

The Children and Youth Projects (C&Ys), were initiated in 1965. More than half were located in medical schools and teaching hospitals, and they frequently had a profound impact on their host agencies. Outreach was not welcome in most teaching institutions where C&Ys were established because the great influx of patients overbalanced "service" at the expense of "education." Children & Youth Projects created an expansion of services and consultations for children, often without payment mechanisms in place, within other medical school departments. These institutions reacted more favorably as C&Ys increased the awareness of pediatrie house staff and medical students to community needs and human problems, and stimulated the growth of additional educational and training programs for personnel in the host agencies. Most C&Y projects haven't fared well. Many have disappeared, others have contracted to physician/nurse operations with other health professionals part time or absent, and some have retreated from a primary care focus to secondary and tertiary care. A combination of factors were responsible: the transfer from federal to state administration, the discontinuation of an established reporting system, and stationary or reduced budgets. But their peer projects - the Maternity and Infant Care (MICs) - didn't wane under similar circumstances. Perhaps there was more interest in infant mortality than child health, perhaps the C&Y objectives became unfocused, or perhaps the perception that they only provided "cadillac care" prevailed.

The neighborhood health center movement, also initiated in the 1960s, has continued to expand. The concept of community control, initially controversial, is now commonplace. Trie transfer of their administration from OEO (Office of Economic Opportunity) to the more traditional DHEW (Department of Health, Education, and Welfare) combined with the name change to community health centers, from this distance, look uneventful. Certainly some of the characteristics, such as involvement in employment and other broad community issues, have nearly disappeared. Fence mending with official agencies has been accomplished by give on both sides through interagency memoranda and other mechanisms. Today, there are approximately 600 federally funded community health centers, including approximately 140 migrant centers (P. Killam, personal communication, 1993), with nearly 7 million patients at some 2000 sites.3

At one time, health care for most of the migrant population was provided under the aegis of state health departments. Today, personal health services for migrants are provided chiefly through the migrant centers, although the states continue to be responsible for sanitation and other public health and environmental services. Hie maintenance of accurate and timely health records and continuity of services has remained a challenge for health-care staff providing services to the migrant populations.

All of these community projects have provided both opportunities and challenges for community pediatrics. Will the issues identified and the problems sometimes solved in these projects be incorporated into the health-care reforms currently under discussion? Despite sustained cutbacks, restrictions, and status in the early 1980s, community health centers have gradually been recovering and expanding in recent years. Will they continue to expand and return to their original broad mandate?

Care Plans

Individual care plans have become a part of modem service delivery. We have interdisciplinary care plans and interagency care plans, frequently several for the same person. The record, I recall, was eight careplans for one individual. As a result of all this overlap, the concept of case managers soon evolved. A case manager, it was thought, would achieve order out of the chaos and confusion. But just as each discipline and each agency wanted its own care plan, each also wanted its own case manager. Case or care managers for individuals began to multiply. It is, however, the local physician and the community who must implement these care plans, provide the day-to-day management, and supply the appropriate community support services for the family. Are community pediatricians prepared for these functions? We have seen that pediatrie training programs and the American Academy of Pediatrics have begun to provide leadership in this area, but I believe we have a long way to go.

Special Groups/Special Settings

The quantity and quality of pediatrie interaction in special settings and with special groups help define "community" in community pediatrics.

After a political struggle of over two decades, federal funds are now available for child care through the Child Care Block Grant. As a national network of out-ofhome child care is constructed, pediatricians will continue to have opportunities to provide consultation, technical assistance, and education on health, nutrition, and safety to local and state programs and agencies. Pediatricians are needed to serve on com' mission and advisory boards and assist with in-service health and safety education for child care staff and parents.

The school setting as a site for health services has experienced considerable change in recent years. School health services and the presence of school nurses have markedly diminished in most areas.4 However, the creation of school nurse practitioners and the expansion of the school-based clinic movement have increased the availability of services in many locales. A number of problems remain. Will schools, as recipients of Medicaid funds and providers of health services, become competitors of pediatri' dans in private practice? Will the expanded services provided by practitioners and school-based clinics receive adequate funding over time, or will they suffer the fate of traditional school health? Can the schools meet the expanded health needs of children with disabilities, chronic illness, and technology dependent conditions?

There are other concerns about the school-aged population. In 1990, almost 2 million children and adolescents were arrested in the United States. The majority were charged with property offenses (theft or vandalism) or with status offenses, such as truancy, running away from home, or being beyond the control of their parents. Children and adolescents in our juvenile justice system do not get the health services that they need.5 Adolescent health leaders have made us aware of the problems: health-care standards developed but not widely adopted, incarcerated juveniles frequently excluded from public financing, and insufficient training of the providers. Pediatrie practitioners, without adolescent health experience, are less aware or less involved with juvenile delinquency, incarceration, and institutional care. Community pediatricians need to be aware of public policy discussions about the administration of juvenile justice, especially concerning the health care of children and youth within the juvenile justice system.

Community pediatricians also should be concerned about the nearly three quarters of a million children and youth incarcerated in adult prisons each year. Their lack of health care is compounded by the social environment of the prison. Incarcerated pregnant, young women are at particular risk as are their infants. In New York, an infant born in prison may remain in prison with her mother for a year. Who provides health care for the infant? Who provides the support and guidance that the mother needs?

Life-threatening emergencies for children arise in many forms - motor vehicle crashes, drownings, bums, poisonings, pneumonia, meningitis, and asthma only begin a long list. Each year, injury alone claims more lives of children between the ages of 1 and 19 than do all forms of illness. In 1988, 21 000 children under the age of 20 years died from injuries. For each death of a child due to injury in this country, as many as 42 children are hospitalized, and 1120 children visit an emergency room (J. Athey, personal communication, 1993). Fortunately, injury prevention has become a prevalent theme among policy makers and providers in recent years. The American Academy of Pediatrics has introduced The Injury Prevention Program (TIPP), making injury prevention a standard part of pediatrie practice. Injury prevention has become a component of public programs and is included in the National Health Objectives, both for 1990 and the year 2000. Much remains to be accomplished in anticipatory guidance, legislation, regulation, and other public action, although we seem to be progressing down the right road.

In addition to the 21 (X)O children and youth who died from injuries in 1988, nearly 21 000 more deaths occurred because of illness and other disorders. Thousands more children were hospitalized, and millions more were treated in emergency departments. When prevention of emergencies foils, families should have access to timely care by trained personnel within a well-organized emergency medical services (EMS) system. But in many EMS systems, children's needs have been overlooked because services were developed for adults. Since 1984, Congress has supported a demonstration grant program, Emergency Medical Services-Children (EMS-C), to expand access to and improve the quality of emergency medical services for children through existing EMS systems. More than 35 states have used these funds to generate knowledge and experience that other states and localities are drawing on. The Institute of Medicine recently issued a report recommending a strengthening of the EMS-C effort, working through channels in both the public and private sectors (J. Athey, personal communication, 1993).

We are in the midst of a paradigm shift regarding our understanding of disability, chronic illness, and health services, as well as of family and cultural diversity. For more than a decade, the Office of the Surgeon General, the Maternal and Child Health Bureau, the American Academy of Pediatrics, and families have worked to develop systems of services for children with special health-care needs and their families. It has flourished under the mantra of "familycentered, community-based, coordinated care that is comprehensive and culturally competent." This language has been included in Title V legislation and in the Year 2000 National Health Promotion and Disease Prevention Objectives.6 This initiative should be seen as part of a larger national movement to develop community-based systems of services. The implementation of Public Laws 94-142 and 99-457, which have been incorporated into the Individuals With Disabilities Education Act (IDEA) and the federal Child and Adolescent Services System Program (CASSP) for severely emotionally disturbed children, are a part of this movement. In addition, national coordinated systems of services are being developed for children and families involved with social services/child welfare and juvenile systems. The movement is receiving support from an increasing number of state legislatures and philanthropic foundations. Community pediatricians have an apparent and challenging leadership role in these efforts.7

One of the functions of community pediatrics is to be aware of problems and changes within the community - an epidemiology of the community. I will discuss two examples.

A few years ago, a public health nurse asked me if I was aware of the status of children's health in women's shelters. As consultant to shelters in the District of Columbia, she was struck by the lack of child health services in the shelters she had visited. The Maternal and Child Health Bureau undertook a small national study, not without difficulty because for obvious reasons, there are no published lists of where shelters exist. The study confirmed her impressions. In most instances, there were neither /acilities nor arrangements with public or private agencies for child health services. It was not surprising that with limited resources and other overwhelming concerns, child health was not a priority for the administration or the staff of shelters. One revelation - pubescent male children are not allowed to stay with their mothers in most shelters. Most of them are left with the abusing male (J. Thomas, unpublished data, 1986). It raises disturbing questions about role modeling, doesn't it? Unfortunately, the Maternal and Child Health Bureau was not able to follow-up on this small study. I suspect the problem continues to exist in many communities.

Demography affects community epidemiology. How well are we prepared to interact with families in our communities that come from a diversity of backgrounds? How well are we prepared to meet their health and social needs?

Hispanics are the fastest growing minority in the United States. In 1990, they comprised 9% of the population, having grown from 7-4% in 1988. Due to continued immigration and high birth rates, it is estimated that Hispanics will become the largest minority group in the United States by the year 2000. Current projections expect Hispanics to reach 11.2% of the US population by the year 2000 and 13.4% by the year 2010. More than half of all mainland Hispanics live in only two states - California and Texas - and the others are highly concentrated in Florida, Arizona, Colorado, New Mexico, Illinois, and New York. The Hispanic population in the United States is comprised of four major subgroups - Mexican, Puerto Rican, Cubans, and Central and South Americans. These groups share a common language, yet each has a very distinctive history and experience, differing widely on many demographic traits and cultural dimensions.8

The challenge for community pediatricians is to become conversant with this rapidly expanding population and with other new arrivals from Southeast Asia, Africa, the Mideast, Eastern Europe, the nations of the former USSR, and elsewhere.

SUMMARY

Community pediatrics has enjoyed remarkable success in recent years. While I have touched on some of that progress and some of the current issues in child health care, it is apparent that many challenges continue to race the field. In the coming months, one can expect many of these issues to enter the healthcare reform discussions. The questions that will arise are not unlike those about mental health care: how large will the benefits package be, what kind of reimbursement system will be used, and who will be the provider? Optimism about the answers doesn't reign every day.

in the chairman's preface to Beyond Rhetoric, the final report of the National Commission on Children, Senator John D. Rockefeller IV wrote:

It is time for our country to recognize the pressing need to ensure accessible, affordable health care, and take the necessary steps to enable children to be born and grow up healthy and to become able, productive adults. . .(H)istory will judge this generation of Americans harshly if we allow futile debate to take the place of action. For millions of children and families, the hour already is late.9

One can look at numerous reports on child health over the past 30 years and find similar impassioned calls to action - with little subsequent action. I hope it will be different this time.

REFERENCES

1. National Health Policy Council. 1993 Notional Conference Sui«}: Executive Summary. Des Moines, Iowa: National Health Policy Council; 1993:1107-1126.

2. Hormuth RP. Menial retardation. In: Wallace HM, Gold EM, Lis EF. eds. Maternal and Child Health Profaces: Problemi, Resources dnd Methods of Delivery. Springfield, HI: CharlejCThomas;1973.

3. Geiger HJ. Community-oriented primary care: the legacy of Sidney Katk. AmJ PuWic Health. 1993:83:946-947.

4. Lynch A. Redesigning School Health Senates. New York, NY: Human Sciences Press Ine; 1983.

5. US Department of Health and Human Services, Maternal and Child Health Bureau. Child HeoWi USA '93. Washington. DC: Maternal & Child Health Information Resource Center; 1993.

6. US Department of Health and Human Services, Maternal and Child Health Bureau. Healthy Children 2000: National Ptarno^ ^ Disease Prevention Objectives Rtlaud to Mothers, infants, Children, Adolescents and Vouih. Washington, DC: US Dept of Health and Human Services; 1990. DHHS publication HRSA-MCH-91-2.

7. Hutchins VL. Federal policy for early childhood: evaluation of service» for children with disabilities. In: Galtagher JJ, Fullager PK. eds. Th* Comdmation of Health and Other Servie» for In/on» and Toddlers With Disabilities; The Caminarían of Parallel Service Systems. Chapel Hill, NC: University of North Carolina at Chapel Hill; 1992:5-19.

8. Ooms T, Latino Famaies. ftwerrj, and Welfare Reform: Background Briefing Report. Washington, DC: The Family Impact Seminar, The AAMFT Research and Education Foundation; 1992.

9. National Commission on Children. Beyond Rhetoric. Washington, DC: US Government Printing Office; 1991.

10.3928/0090-4481-19941201-09

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