A REVIEW OF THE HHS FAMILY PLANNING PROGRAM

Mission, Management, and Measurement of Results

Adrienne Stith Butler and Ellen Wright Clayton, Editors

Committee on a Comprehensive Review of the HHS Office of Family Planning Title X Program

Board on Health Sciences Policy

Board on Children, Youth, and Families

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

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A REVIEW OF THE HHS FAMILY PLANNING PROGRAM Mission, Management, and Measurement of Results Adrienne Stith Butler and Ellen Wright Clayton, Editors Committee on a Comprehensive Review of the HHS Office of Family Planning Title X Program Board on Health Sciences Policy Board on Children, Youth, and Families

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance. This study was supported by Contract No. HHSP23320042509XI, Task Order No. 13 between the National Academy of Sciences and the U.S. Department of Health and Human Services, Office of Family Planning. Any opinions, findings, conclu- sions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-13117-9 International Standard Book Number-10: 0-309-13117-0 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2009 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2009. A Review of the HHS Family Planning Program: Mission, Management, and Measurement of Results. Washing- ton, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general wel- fare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Insti- tute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE ON A COMPREHENSIVE REVIEW OF THE HHS OFFICE OF FAMILY PLANNING TITLE X PROGRAM ELLEN WRIGHT CLAYTON (Chair), Rosalind E. Franklin Professor of Genetics and Health Policy, Professor of Pediatrics, Professor of Law, Director, Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tennessee RONALD M. ANDERSEN, Wasserman Professor Emeritus in Health Services and Sociology, University of California, Los Angeles DYAN A. ARETAKIS, Project Director and Nurse Practitioner, Teen Health Center, University of Virginia Health System, Charlottesville, Virginia JENNIFER S. BARBER, Associate Professor, Institute for Social Research, University of Michigan, Ann Arbor MIRIAM A. BENDER, Chief Executive Officer, Women’s Health Virginia, Charlottesville REGINA M. BENJAMIN, Founder and CEO, Bayou La Batre Rural Health Clinic, Inc., Bayou, La Batre, Alabama CLAIRE D. BRINDIS, Professor of Pediatrics and Health Policy, Department of Pediatrics; Director, Philip R. Lee Institute for Health Policy Studies; Co-Director, Bixby Center for Global Reproductive Health, University of California, San Francisco SARAH S. BROWN, Chief Executive Officer, The National Campaign to Prevent Teen and Unplanned Pregnancy, Washington, DC BETTY A. CHEWNING, Professor and Director, Sonderegger Research Center, School of Pharmacy, University of Wisconsin, Madison, Wisconsin ANGELA DIAZ, Jean C. and James W. Crystal Professor of Adolescent Health, Departments of Pediatrics and Community Medicine; Director, Mount Sinai Adolescent Health Center, Mount Sinai Medical Center, New York, New York VIVIAN M. DICKERSON, Clinical Professor of Obstetrics and Gynecology, University of California Irvine Medical Center, Executive Medical Director of Women’s Health, Hoag Memorial Hospital Presbyterian, Newport Beach, California STEPHEN F. HEARTWELL, Deputy Director of Domestic Programs, The Susan Thompson Buffett Foundation, Omaha, Nebraska JUDITH R. LAVE, Chair, Department of Health Policy and Management; Director, Health Administration Program; Co-director, Center for Research on Health Care; Professor of Health Economics; Director, Pennsylvania Medicaid Policy Center, Graduate School of Public Health, University of Pittsburgh, Pennsylvania v

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ELLEN L. RAUTENBERG, President and Chief Executive Officer, Public Health Solutions, New York, New York EDUARDO J. SANCHEZ, Vice President and Chief Medical Officer, Blue Cross and Blue Shield of Texas, Richardson JEANNETTE E. SOUTH-PAUL, Andrew W. Mathieson Professor and Chair, Department of Family Medicine, University of Pittsburgh, Pennsylvania Study Staff ADRIENNE STITH BUTLER, Senior Program Officer MARNINA KAMMERSELL, Research Associate THELMA L. COX, Senior Program Assistant RONA BRIERE, Consultant Editor Board Staff ANDREW M. POPE, Director, Board on Health Sciences Policy ROSEMARY CHALK, Director, Board on Children, Youth, and Families AMY PACKMAN, Assistant, Board on Health Sciences Policy DONNA RANDALL, Financial Associate vi

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Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: ELI Y. ADASHI, Brown University VIRGINIA A. CAINE, Marion County Health Department JACQUELINE E. DARROCH, Independent Researcher RACHEL BENSON GOLD, Guttmacher Institute ALMA L. GOLDEN, Texas A&M University Health Science Center MARGARET GREENE, International Center for Research on Women LORRAINE V. KLERMAN, Brandeis University, SANDERS KORENMAN, Baruch College of the City University of New York LEIGHTON KU, The George Washington University SARA ROSENBAUM, The George Washington University MARGIE FITES SEIGLE, California Family Health Council SARA SEIMS, William and Flora Hewlett Foundation NANCY FUGATE WOODS, University of Washington vii

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viii REVIEWERS Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Susan C. Scrimshaw and Kristine M. Gebbie. Appointed by the National Research Council and Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Preface On January 22, 2009, President Obama emphasized our country’s need to “prevent unintended pregnancies . . . and support women and families in the choices they make.” He clearly understands that the ability to con- trol conception is essential “to ensuring that our daughters have the same rights and opportunities as our sons. . . .” Adequate spacing of childbearing benefits the health of children and the socioeconomic well-being of their families. Healthy families, in turn, strengthen society. Yet while family planning has been cited as one of the great public health achievements of the twentieth century, it has long been controversial. It is expressly forbid- den by some religious traditions, and even the mention of contraception was banned for decades in the United States. Control of sexuality and procreation lies at the heart of the culture wars that divide the nation. To assist individuals in planning their families, we must work to find common ground to expand access to affordable contraception and accurate health information. In this context, the resilience of Title X, the only federal program devoted exclusively to family planning, is remarkable in many ways. The program, which is directed primarily at the poor and near poor, was born in 1970 out of a conviction that all people, not just the wealthy, should be able to plan their families. President Richard Nixon showed a particular interest in family planning and in a message to the Congress in July 1969 wrote: “It is my view that no American woman should be denied access to family planning assistance because of her economic condition. I believe, therefore, that we should establish as a national goal the provision of adequate family planning services within the next five years to all those ix

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x PREFACE who want them but cannot afford them.” From the beginning, Title X has awarded its funding on a competitive basis and to a wide variety of both public and private entities. At the same time, the program has been under enormous pressure almost from its inception. The population in need has grown enormously in both numbers and diversity in the intervening years. The number and efficacy of contraceptive and diagnostic technologies have also grown, as have their prices. While Title X was not incorporated into state block grants in the early 1980s, in part to protect family planning from local politics, funding in inflation-adjusted dollars for the program has leveled off or declined since 1980, demonstrating the lack of strong support for the pro- gram on the national level. Congress has amended the program on several occasions, initially expanding services to adolescents and then requiring providers to encourage teens to talk with their parents, adding services for infertility, and clarifying that Title X providers are not exempt from state child abuse reporting requirements. The position of the Deputy Assistant Secretary for Population Affairs was unfilled for three years between 2000 and 2009 and had two different occupants in the last 3 years alone. The requirements for services to be offered by Title X providers have changed frequently over the years, often without a clear rationale and usually with- out additional funding. Finally, the program has long been buffeted by this country’s deep divi- sions regarding abortion. Even though Title X has never paid for abortions, abortion issues can still affect the provision of family planning services. For example, clinicians who support women’s right to choose abortion worry that they are unable to provide—and that women will not be able to obtain—the advice they need under rules that limit disclosure. Those clini- cians who oppose abortion feel that they are “promoting” abortion if they even mention the procedure and may decide not to provide family planning at all if required to provide abortion counseling or referral. The separation of abortion from family planning services can be particularly problematic. Indeed, the woman who has just terminated an unwanted pregnancy might be particularly receptive to contraception, and the inability to use Title X funds to address this issue at the time of abortion represents a major lost opportunity. Given the passion aroused by competing views about how family planning ought to be provided, it is hardly surprising that Title X has for years been buffeted by political and fiscal gales. Against this backdrop of limited funding and ongoing controversy, the Committee on a Comprehensive Review of the HHS Office of Fam- ily Planning Title X Program was convened by the Institute of Medicine. The committee was composed of members with a broad range of expertise and perspectives regarding Title X, some favorable and others critical of the program. The committee’s evaluation encompassed the goals of the

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xi PREFACE program, its administration and management, and whether it is serving its target populations. To conduct the evaluation, the committee examined numerous documents, held 5 meetings and 3 public workshops, made 16 site visits, and commissioned 2 papers. The detailed and in-depth informa- tion and stakeholder views thus obtained served as the basis for a series of recommendations, presented in this report, for building on and enhancing the successes achieved by the Title X program. The committee’s work could not have been completed without the tire- less efforts of its members and the extraordinary support of Marnina Kam- mersell, Thelma L. Cox, and especially Adrienne Stith Butler, our Senior Program Officer and the staff director of this study. To all of them, I extend my personal gratitude for the important work that they have completed so well. It is my hope, shared by the committee, that the new administra- tion will use our findings and recommendations to strengthen services for family planning and reproductive health, thereby improving the lives of our nation’s families and promoting equality of opportunity for women, in particular. Ellen Wright Clayton, Chair Committee on a Comprehensive Review of the HHS Office of Family Planning Title X Program

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Acknowledgments Several individuals and organizations made important contributions to the study committee’s process and to this report. The committee wishes to thank these individuals, but recognizes that attempts to identify all and acknowledge their contributions would require more space than is available in this brief section. To begin, the committee would like to thank the sponsor of this report. Funds for the committee’s work were provided by the U.S. Department of Health and Human Services, Office of Family Planning (OFP). The commit- tee thanks Susan B. Moskosky, Director of the Office of Family Planning, and David M. Johnson, who served as project officer, for their assistance during the study process. The committee gratefully acknowledges the contributions of the many individuals who assisted the committee in its work. The committee found the perspectives of many individuals and organizations to be valuable in understanding the Title X program. It thanks those who participated in the committee’s meetings by providing important information at its open work- shops. Participants included a variety of stakeholders; Title X grantees, delegates, and regional program consultants; and state and federal govern- ment representatives. Appendix A lists each of these individuals and their affiliations. As part of its review, the committee visited several sites that receive Title X funding in order to gather information about the role of Title X clinics in providing reproductive health services. These visits helped the committee understand the experiences of local administrators and service providers. In addition to clinic visits, several individuals with knowledge of the program, including Central Office staff, grantees, and regional program xiii

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xiv ACKNOWLEDGMENTS consultants, were interviewed by The Lewin Group (see Appendix J) for its assessment of the administration and management of the Title X program. Appendixes F and J provide findings from these visits and interviews. The committee greatly appreciates the time and information provided by all of these knowledgeable and dedicated individuals. Finally, the committee would like to thank the authors whose commis- sioned papers added to the evidence base that the committee examined. These include Julie Wolcott and Colleen Hirschkorn, The Lewin Group; and Kimberly D. Gregory, Cedars-Sinai Medical Center.

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Contents SUMMARY 1 Study Charge, 2 Findings, Conclusions, and Recommendations, 4 Concluding Thoughts, 20 References, 20 1 INTRODUCTION 23 Overview of the Title X Program, 23 Study Purpose and Charge to the Committee, 25 Study Approach, 27 Organization of the Report, 27 2 OVERVIEW OF FAMILY PLANNING IN THE UNITED STATES 29 Why Family Planning Is Important, 30 Milestones in Family Planning, 37 The Use of Family Planning Services, 45 The Changing Context in Which Family Planning Services Are Provided, 48 Financing of Family Planning, 66 Conclusions, 70 xv

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xvi CONTENTS 3 TITLE X GOALS, PRIORITIES, AND ACCOMPLISHMENTS 71 Original Goals and Amendments to the Law, 72 Shifts in Program Emphasis, 74 Fulfillment of the Program Mission and Goals, 83 Conclusions and Recommendations, 96 4 PROGRAM MANAGEMENT AND ADMINISTRATION 101 Central Office, Regional Offices, Grantees, and Delegates: Roles and Relationships, 102 Application Process, 105 Grantees and Delegates: Types and Distribution, 109 Services Provided by Grantees and Delegates, 113 Oversight of Grantees and Delegates, 115 Funding of Grantees and Delegates, 116 Assessment of the Program’s Management and Administration, 123 Conclusions and Recommendations, 139 5 COLLECTION OF DATA TO MEASURE PROGRAM OUTCOMES 145 PART Process for Evaluating Title X, 145 Committee’s Evaluation Questions, 146 Committee’s Evaluation Framework, 146 Current Sources of Data for Program Assessment, 148 Applying the Committee’s Framework to Assess OFP’s Measures and Goals, 151 Adequacy of the Data Collection Infrastructure, 151 Conclusions and Recommendations, 166 Concluding Thoughts, 170 REFERENCES 171 APPENDIXES* A Data Sources and Methods 183 B Population Research and Voluntary Family Planning Programs 191 C Title X Family Planning Program Regulations 197 D Program Guidelines for Project Grants for Family Planning Services 215 E Family Planning Program Assessment Rating Tool 251 *The appendixes are not printed in this book but are on the CD-ROM attached to the inside back cover.

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xvii CONTENTS F Committee Site Visits 267 G Family Planning Annual Report Data Elements 285 H Summary of Previous Title X Evaluations and Reviews 295 I Title X– and OPA-Funded Research 301 J Organization, Funding, and Management of the Title X Program 343 K Measurement of Quality in the Title X Family Planning Program 407 L Committee and Staff Biographies 459

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