Proceedings of a Workshop
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by a contract between the National Academy of Sciences and the U.S. Health Resources and Services Administration (75R60221D 00002/75R60221F34002). 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: 978-0-309-69323-3
International Standard Book Number–10: 0-309-69323-3
Digital Object Identifier: https://doi.org/10.17226/26702
This publication is available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Copyright 2022 by the National Academy of Sciences. National Academies of Sciences, Engineering, and Medicine and National Academies Press and the graphical logos for each are all trademarks of the National Academy of Sciences. All rights reserved.
Printed in the United States of America.
Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Supporting Children with Disabilities: Lessons from the Pandemic: Proceedings of a Workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26702.
The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.
The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president.
The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.
The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.
Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.
Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.
Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.
Rapid Expert Consultations published by the National Academies of Sciences, Engineering, and Medicine are authored by subject-matter experts on narrowly focused topics that can be supported by a body of evidence. The discussions contained in rapid expert consultations are considered those of the authors and do not contain policy recommendations. Rapid expert consultations are reviewed by the institution before release.
For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.
PLANNING COMMITTEE ON SUPPORTING CHILDREN WITH DISABILITIES: LESSONS FROM THE PANDEMIC: A WORKSHOP
AMY HOUTROW (Chair), University of Pittsburgh
EMILY HOTEZ, University of California, Los Angeles
CHANDA JONES, University of Florida Health
YETTA MYRICK, DC Autism Parents
NATASHA STRASSFELD, Univeristy of Texas at Austin
MARC J. TASSÉ, The Ohio State University
AMANDA GRIGG, Program Officer
SUNIA YOUNG, Senior Program Assistant
NATACHA BLAIN, Senior Board Director
EMILY BACKES, Deputy Board Director
This page intentionally left blank.
BOARD ON CHILDREN, YOUTH, AND FAMILIES
DAVID V.B. BRITT (Chair), Sesame Workshop (retired)
HAROLYN BELCHER, Center for Diversity in Public Health Leadership Training, Kennedy Krieger Institute, Professor of Pediatrics, Johns Hopkins University School of Medicine
RICHARD F. CATALANO, School of Social Work, University of Washington, and Social Development Research Group
TAMMY CHANG, Department of Family Medicine, University of Michigan
DIMITRI CHRISTAKIS, Center for Child Health, Behavior, and Development at Seattle Children’s Research Institute, University of Washington
GREG DUNCAN, School of Education, University of California, Irvine
NANCY E. HILL, Graduate School of Education, Harvard University
STEPHANIE J. MONROE, The Wrenwood Group, LLC
JAMES M. PERRIN, Harvard Medical School, MassGeneral Hospital for Children
NISHA SACHDEV, Center for Health and Health Care in Schools, George Washington University Milken Institute of Public Health
MARTIN H. TEICHER, Developmental Biopsychiatry Research Program, McLean and Harvard Medical School
JONATHAN TODRES, Georgia State University College of Law
JOANNA LEE WILLIAMS, Graduate School of Applied and Professional Psychology, Rutgers University
NATACHA BLAIN, Senior Board Director
EMILY BACKES, Deputy Board Director
This page intentionally left blank.
Acknowledgments
This Proceedings of a Workshop 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 proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings: Mark J. Tassé, The Ohio State University, and Maryann Terrana, National Academies of Sciences, Medicine, and Engineering.
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by Patrick H. DeLeon, Graduate School of Nursing, Uniformed Services University of the Health Sciences. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteur(s) and the National Academies.
This page intentionally left blank.
Preface
We are pleased to introduce these proceedings of the National Academies of Sciences, Engineering, and Medicine workshop on Supporting Children with Disabilities: Lessons from the Pandemic. Recognizing that children and youth with disabilities have suffered disproportionately during the pandemic compared to their non-disabled peers, the broadest goal of the workshop was to highlight promising approaches and strategies used to address the challenges they faced and to consider what policies and programs should be sustained, expanded, or implemented beyond the pandemic to support children with disabilities and their families. The committee in particular aimed to identify practices that could help in efforts to move forward, improving the system of care and increasing access to services for underserved populations. The workshop also aimed to attend to the inequities that exist among children with disabilities, with a focus on the needs of underserved and oppressed children and families.
We are grateful to the extraordinary planning committee, composed of experts in fields of research, practice, and policy in the service of children with disabilities. Through their vision and networks, we assembled a remarkable group of workshop sessions and speakers. In order to highlight the profound value of lived experience, the planning committee chose to begin the workshop with a session featuring youth with disabilities and caregivers for youth with disabilities. In the following sessions, speakers shared innovations and best practices across key program areas and policy domains including hospital and outpatient settings, school and education settings, public health and emergency planning, and home care settings. Other panels focused specifically on efforts to support children with
disabilities through state and federal policy, identifying promising practices for health equity and attending to support needs as we transition toward planning for pandemic recovery. Across all sessions and panels, we asked participants to keep the following principles in mind:
- Promising practices should be coupled with recommendations for actionable strategies to promote and disseminate these practices more broadly and sustainably;
- Recommendations should adhere to the principles of health equity and intersectionality;
- Programmatic design, implementation, evaluation and dissemination are optimized when children with disabilities and their families are partners at every stage; and
- Levers for change may exist at multiple levels and with intersections between different settings and policy domains.
During the period of three half-days on June 13, 14, and 15, 2022, the workshop was conducted virtually, reaching over 450 participants. Although originally intended to be held in person, the experience demonstrated the investment and motivation from people from across the U.S. to learn from the workshop program and engage with the goals of supporting children with disabilities and their families.
Finally, we are grateful to the U.S. Health Resources and Services Administration (HRSA) for the funding to make the workshop possible. The committee in particular found HRSA’s Blueprint for Change to be an essential guide in conducting its work and informing the workshop. Our hope is that this workshop will support the continued efforts of the many stakeholders working to support the flourishing of children with disabilities.
Amy Houtrow, Planning Committee Chair,
Supporting Children with Disabilities:
Lessons from the Pandemic: A Workshop
Home-Based Care for Children in Foster Care
Regulatory and Other Responses to the Pandemic
Impact of Public Health Policy on Schools
Technology Transformation During COVID
Disabilities and COVID-19: A Compounding of Inequities
7 PUBLIC HEALTH AND EMERGENCY PLANNING
Emergency Preparedness Conference
Health and Emergency Planning for Families and Providers
Trauma-Informed and Healing-Centered Care for Children with Disabilities
Teletherapy for Children with Disabilities
Engaging and Empowering Communities
B Biographical Sketches of Planning Committee Members and Workshop Speakers