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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Image

Optimizing Care Systems for
People with Intellectual and
Developmental Disabilities

_____

Joe Alper, Rose Marie Martinez, and
Kelly McHugh, Rapporteurs

Board on Population Health and Public Health
Practice

Health and Medicine Division

Proceedings of a Workshop

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by an anonymous donor and the National Academies of Sciences, Engineering, and Medicine. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any agency or organization that provided support for the project.

International Standard Book Number-13: 978-0-309-69060-7
International Standard Book Number-10: 0-309-69060-9
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing care systems for people with intellectual and development disabilities: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26624.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

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.

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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.

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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

PLANNING COMMITTEE FOR A WORKSHOP ON OPTIMIZING CARE SYSTEMS FOR PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES1

JAMES PERRIN (Cochair), John C. Robinson Chair in Pediatrics, Massachusetts General Hospital for Children, and Professor of Pediatrics, Harvard Medical School

HOANGMAI PHAM (Cochair), President, Institute for Exceptional Care

KARA AYERS, Assistant Professor of Pediatrics, University of Cincinnati College of Medicine

JULIA BASCOM, Executive Director, Autistic Self Advocacy Network

ALICIA THERESA FRANCESCA BAZZANO, Chief Health Officer, Special Olympics International

SUSAN THOMPSON HINGLE, Associate Dean, Center for Human and Organizational Potential, and Professor of Medicine at Southern Illinois University School of Medicine

ELIZABETH MAHAR, Director of Family and Sibling Initiatives at the Arc U.S.

SANDRA SCHNEIDER, Associate Executive Director, American College of Emergency Physicians

Health and Medicine Division Staff

ROSE MARIE MARTINEZ, Study Director and Senior Board Director, Board on Population Health and Public Health Practice

KELLY MCHUGH, Research Associate

STEPHANIE HANSON, Research Associate (until April 2022)

DARA ROSENBERG, Research Associate

GRACE READING, Senior Program Assistant

Y. CRYSTI PARK, Administrative Assistant

Consultant

JOE ALPER, Consulting Writer

___________________

1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

Reviewers

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:

DONNA M. FICK, Penn State College of Nursing

JANET SHOUSE, Vanderbilt Kennedy Center

MEGHAN WARREN, Patient-Centered Outcomes Research Institute

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 MAXINE HAYES, School of Medicine, and School of Public Health, University of Washington. She 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 rapporteurs and the National Academies.

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

Acknowledgments

The National Academies of Sciences, Engineering, and Medicine’s Board on Population Health and Public Health Practice wishes to express its sincere gratitude to Planning Committee cochairs James Perrin and Hoangmai Pham for their valuable contributions to the development and orchestration of this workshop. The board also wishes to thank all the members of the planning committee and the staff who collaborated to ensure a workshop complete with informative presentations and rich discussions. Finally, the board thanks the speakers and moderators who generously shared their expertise and their time with workshop participants.

This activity was supported by an anonymous sponsor and the Board on Population Health and Public Health Practice of the National Academies of Sciences, Engineering, and Medicine.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×
Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

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Page xvii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×

Acronyms and Abbreviations

AAMC Association of American Medical Colleges
ADA Americans with Disabilities Act
AMA American Medical Association
CCA Commonwealth Care Alliance
CDC Centers for Disease Control and Prevention
CHIP Children’s Health Insurance Program
CMMI Center for Medicaid & Medicare Innovation
CMS Centers for Medicare & Medicaid Services
COVID-19 coronavirus disease 2019
DD Act Developmental Disabilities Assistance and Bill of Rights Act
DPC Domestic Policy Council
DSP direct support professional
ECHO Extension for Community Healthcare Outcomes
ED emergency department
EPSDT early and periodic screening, diagnostic, and treatment
F2F family-to-family
FQHC federally qualified health center
HCBS home and community-based services
HHS Department of Health and Human Services
Page xviii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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HOME Healthy Options, Medical Excellence
HUD Department of Housing and Urban Development
ICF/ID intermediate care facilities for individuals with intellectual disability
IDD intellectual and developmental disability
LCME Liaison Committee on Medical Education
LTSS long-term services and supports
NBS Newborn Screening
NCD National Council on Disability
NCQA National Committee for Quality Assurance
PATH Partnering to Transform Health Outcomes with Persons with IDD
PWIDD persons with IDD
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×
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Page xvii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26624.
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Approximately 7.4 million people in the United States live with an intellectual or developmental disability (IDD), defined by the Centers for Disease Control and Prevention as "a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime." Individuals with IDD and their caretakers face exceptional barriers to staying healthy and accessing appropriate health services. Among these barriers are difficulty finding care providers that are adequately trained in meeting their specialized needs, unwieldy payment structures, and a lack of coordination between the various systems of care with which patients with IDD may interact (e.g., education, social work, various segments of the health care system).

The National Academies of Sciences, Engineering, and Medicine hosted a workshop to discuss promising innovations in (1) workforce development, (2) financing and payment, and (3) care coordination; and to share visions for improved systems of care. Participants noted that while many existing approaches could serve as models for improving care, large changes will need to be made in these 3 facets of the care system in order to make them accessible to all IDD patients. This publication summarizes the presentations and discussions of the workshop.

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