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
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
Digital Object Identifier: https://doi.org/10.17226/26624
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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.
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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.
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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.
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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.
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Contents
ELEMENTS AND COMPETENCIES OF AN INTEGRATED SYSTEM OF CARE
Exploring Attitudes of Doctors Toward People with a Disability
Providing Hope, Support, and Information to Families
CHALLENGES IN WORKFORCE STRENGTH AND PREPAREDNESS
Challenges Clinicians Face When Providing IDD Services
Barriers and Potential Solutions to Optimal Health Care for Patients with Disabilities
Challenges in Workforce Availability, Training, and Payment
SPOTLIGHT PRESENTATION: OPERATION HOUSE CALL
CHALLENGES IN FINANCING AND PAYMENT
The Swiss Cheese of Financing Services and Supports for People with IDD
DAY TWO: CURRENT AND PROMISING INTERVENTIONS
INNOVATIVE MODELS OF CARE AND COORDINATION
Healthy Option, Medical Excellence: The Huntsman Mental Health Institute Neurobehavior HOME Program
Optimizing Care Systems for People with IDD
SPOTLIGHT PRESENTATION: BUILDING A BEHAVIORAL THERAPY METAVERSE
INNOVATIONS IN WORKFORCE SOLUTIONS: THE ROLE OF GENERAL HEALTH CARE PROVIDERS
Partnering to Transform Health Outcomes for Persons with IDD
INNOVATIONS IN FINANCING AND PAYMENT
Innovations in Payment and Financing for IDD Services
Innovative Value-Based Contracting and Alternative Payment Models
CONSIDERING A NEW VISION FOR MODELS OF CARE
Elements of System Transformation
Rethinking Holistic Coordination, Connections, and Integration for People with IDD
North Carolina’s Integrated Care for Kids Model
SPOTLIGHT PRESENTATION: SPECIALIZED TELEMEDICINE FOR INDIVIDUALS WITH IDD
TECHNICAL AND POLICY OPPORTUNITIES IN FINANCING AND PAYMENT
Risk Adjustment for Payment of Health and HCBS
Financing Care Systems for People with IDD
A Population Health Framework for Caring for Individuals with IDD
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Box, Figures, and Tables
BOX
1 A working list of holistic coordinated functions
FIGURES
1 The services that families and children with special health care needs use
2 A care map drawn by a patient and their family
3 Essential capacities of IDD practices
4 Core components of care systems for individuals with IDD
5 Actions systems could take to improve care for people with IDD
6 Historical life expectancy of individuals with IDD
7 Number of people living in a given setting by size, 1980–2030 (estimated)
8 Public spending on IDD services, 1977–2015
9 NCQA’s LTSS quality framework
TABLES
1 Strategies to Address the Holes in Financing Services and Supports for Individuals with IDD
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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 |
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 |