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This activity was supported by Contract/Task Order No. 28321318D000600 15/28321322FDS030153 between the National Academy of Sciences and the U.S. Social Security Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-71287-3
International Standard Book Number-10: 0-309-71287-4
Digital Object Identifier: https://doi.org/10.17226/27375
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Low birth weight babies and disability. Washington, DC: The National Academies Press. https://doi.org/10.17226/27375.

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COMMITTEE ON THE IDENTIFICATION AND PROGNOSIS OF LOW BIRTH WEIGHT BABIES IN DISABILITY DETERMINATIONS

WALTER FRONTERA (Chair), Professor of Physical Medicine and Rehabilitation, University of Puerto Rico School of Medicine

BREE ANDREWS, Associate Professor of Pediatrics, The University of Chicago

JENNIFER CASTEIX, Clinical Professor in Speech, Language, and Hearing Science, The University of Arizona

AARON CAUGHEY, Professor and Chair, Department of Obstetrics and Gynecology, Oregon Health & Science University

JOSÉ CORDERO, Patel Distinguished Professor of Public Health, University of Georgia

WENDY COSTER, Professor Emeritus, Department of Occupational Therapy, Boston University College of Health and Rehabilitation Sciences

SHERIN DEVASKAR, Distinguished Professor of Pediatrics and Mattel Executive Endowed Chair, David Geffen School of Medicine at UCLA

ANDREA DUNCAN, Associate Professor, Distinguished Endowed Chair, Department of Pediatrics at the University of Pennsylvania Perelman School of Medicine and Children’s Hospital of Philadelphia (CHOP)

DEBORAH GAEBLER-SPIRA, Professor of Physical Medicine and Rehabilitation and Pediatrics, Shirley Ryan AbilityLab, Feinberg Northwestern School of Medicine, Lurie Children’s Hospital

MICHELLE GREENE, Clinical Psychologist and Associate Professor, Rush University Medical Center

JENNIFER KOOP, Professor of Neurology (Neuropsychology), Medical College of Wisconsin and Children’s Wisconsin

DENNIS KUO, Professor of Pediatrics and Chief of Developmental and Behavioral Pediatrics, University of Rochester Medical Center

PAUL LIPKIN, Professor of Pediatrics, Kennedy Krieger Institute, Johns Hopkins School of Medicine

HEATHER MILLER MONIHAN, Pediatrics Rehabilitation Therapy Manager, Johns Hopkins Children’s Center

LUCIE SCHMIDT, Robert A. Woods Professor of Economics, Smith College

Study Staff

CAROL MASON SPICER, Study Director/Responsible Staff Officer, Senior Program Officer

AUSTEN APPLEGATE, Research Associate

VIOLET BISHOP, Research Assistant

SHARYL NASS, Senior Director, Board on Health Care Services

NATACHA BLAIN, Senior Director, Board on Children, Youth, and Families

Reviewers

This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, 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 thank the following individuals for their review of this report:

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report, nor did they see the final draft before its release. The review of this report was overseen by ROBERT LAWRENCE, Johns Hopkins Bloomberg School of Public Health, and CLAIRE BRINDIS, University of California, San Francisco. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.

Acknowledgments

The committee extends its sincere thanks to the many individuals who shared their time and expertise to support its work and inform its deliberations. The study was sponsored by the Social Security Administration (SSA), and we thank Megan Butson, Steven Kellogg, Vincent Nibali, and Steve Rollins for their guidance and support. The committee also acknowledges Vincent Nibali and Stefanie Bolls at SSA for verifying relevant technical content pertaining to the disability determination process for accuracy. The committee thanks Melanie Guldi for providing calculations that informed its work. The committee also benefited greatly from discussions with individuals who presented at the committee’s open sessions: Vicki Girard, Ashwini Lakshmanan, Vincent Nibali, S. Roxana Richardson, Steve Rollins, Lucie Schmidt, and Rachel Witt.

Our appreciation goes to the reviewers for their invaluable feedback on an earlier draft of the report and to the monitor and coordinator who oversaw the report review.

The committee acknowledges the many staff within the Health and Medicine Division who provided support in various ways to this project, including Carol Mason Spicer (study director), Austen Applegate (research associate), Violet Bishop (research assistant), Karen Helsing (senior program officer), Arzoo Tayyeb (finance business partner), Julie Wiltshire (senior finance business partner), and Ron Brown (deputy director, HMD program finance). The committee extends great thanks and appreciation to Sharyl Nass, senior director, Board on Health Care Services, who oversaw the project, and Natacha Blain, senior director, Board on

Contents

SUMMARY

1 INTRODUCTION

Context for This Study

Study Charge and Scope

Study Approach

Report Organization

References

2 CONTRIBUTORS TO AND TRENDS IN MORBIDITY, MORTALITY, AND SURVIVABILITY AMONG LOW BIRTH WEIGHT INFANTS

Contributors to Low Birth Weight

Professionally Accepted Standards Defining Low Birth Weight and Preterm Infants

Current Survivability Rates

Occurence of Long-Term Health Effects Among Children Born at Low Birth Weight

Advances in Prevention of and Acute Medical Care for Low Birth Weight and Preterm Birth and Improved Outcomes

Neonatal Research Networks and Programs Supporting LBW Infants

Findings and Conclusions

References

3 DEVELOPMENTAL DOMAINS AND TRAJECTORIES

Developmental Skills and Function

The Progression of Development

Developmental and Functional Domains

Typical Developmental Progress

Altered Developmental Progress

Developmental Timelines for Preterm and Small for Gestational Age Low Birth Weight Infants

Findings and Conclusions

References

4 HEALTH CONDITIONS AND IMPAIRMENTS ASSOCIATED WITH LOW BIRTH WEIGHT AND THEIR FUNCTIONAL IMPLICATIONS

Selected Health Conditions and Impairments Associated with Low Birth Weight and Their Functional Implications

Outcomes and Function

Findings and Conclusions

References

5 AVAILABILITY AND DELIVERY OF TREATMENTS, SERVICES, AND RESOURCES

Landscape Surrounding the Delivery of Treatments and Services

Transition to Home

Early Learning and the School Environment

Challenges to Accessing Treatments and Services

Navigating Fragmented Systems of Care

Resources and Outcomes for Low-Income Children with Disabilities

Findings and Conclusions

References

6 OVERALL CONCLUSIONS

Overall Conclusions

Selected Findings and Conclusions in Support of Overall Conclusions

APPENDIXES

A Public Meeting Agendas

B Glossary

C Biographical Sketches of Committee Members

Boxes, Figures, and Tables

BOXES

1-1 Statement of Task

1-2 Medical Definitions

6-1 Overall Conclusions and Selected Chapter-Specific Findings and Conclusions

FIGURES

S-1 Relationships among medical categories of low birth weight infants

S-2 The committee’s framework for functioning and disability in children and youth

1-1 Relationship between SSA disability processes for children born low birth weight and the ages at which they occur, and transition points within the developmental timeline

1-2 Interaction among the components of the International Classification of Functioning, Disability and Health

1-3 The committee’s framework for functioning and disability in children and youth

1-4 Conceptual framework for the interplay between social determinants of health and health disparities

1-5 Relationships among medical categories of low birth weight infants

2-1 Environmental, socioeconomic, maternal, placental, and fetal influences on birth weight

2-2 Infant mortality rates in the United States by state, 2021

3-1 Altered developmental trajectories

5-1 Relationship between SSA disability processes for children born low birth weight and the ages at which they occur, and transition points within the developmental timeline

TABLES

S-1 Social Security Administration’s Listing Criteria for Birth Weight Relative to Gestational Age

1-1 Social Security Administration’s Listing Criteria for Birth Weight Relative to Gestational Age

1-2 Eligibility for Supplemental Security Income (SSI) Benefits Based on the Social Security Administration’s Listing Criteria Versus Medical Criteria for Low Birth Weight

2-1 Infant Mortality Rate, for Short Gestation and Low Birth Weight, Not Elsewhere Classified: United States, 2010–2021 (deaths per 1,000 live births)

2-2 Infant Mortality Rate by Gestational Age: United States, 2015–2021 (deaths per 1,000 live births)

2-3 Infant Mortality Rate by Birth Weight: United States, 2000–2021 (deaths per 1,000 live births in specified group)

3-1 Relationship Among Terms for Different Frameworks for Developmental and Functional Domains

3-2 Selected Developmental Skills from Birth to 24 Months

4-1 Risk for Selected Health Conditions and Impairments by Birth Weight

ANNEX TABLES

Annex Table 4-1 Health Conditions and Impairments Associated with Low Birth Weight That Are Commonly Diagnosed from Birth to 1 Year

Annex Table 4-2 Health Conditions and Impairments Associated with Low Birth Weight That Are Commonly Diagnosed at 1–3 Years

Annex Table 4-3 Health Conditions and Impairments Associated with Low Birth Weight That Are Commonly Diagnosed at 3–5 Years

Annex Table 4-4 Health Conditions and Impairments Associated with Low Birth Weight That Are Commonly Diagnosed at 5–12 Years

Annex Table 4-5 Health Conditions and Impairments Associated with Low Birth Weight That Are Commonly Diagnosed at 12–18 Years

Acronyms and Abbreviations