People Living
with Disabilities
HEALTH EQUITY,
HEALTH DISPARITIES, AND
HEALTH LITERACY
PROCEEDINGS OF A WORKSHOP
Joe Alper, Rapporteur
Roundtable on the Promotion of Health Equity
Roundtable on Health Literacy
Board on Population Health and Public Health Practice
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and Abbvie Inc.; Aetna Foundation; Agency for Healthcare Research and Quality (HHSP23337024); American Dental Association; Bristol-Myers Squibb; The Colorado Trust; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Media; Health Literacy Partners; Health Resources and Services Administration (HHSH25034011T); Humana; Institute for Healthcare Advancement; The Kresge Foundation; Merck Sharpe & Dohme Corp.; National Institutes of Health (HHSN26300054); National Library of Medicine; Northwell Health; Office of Disease Prevention and Health Promotion (HHSP23337043); Office of Minority Health at the Centers for Medicare & Medicaid Services; UnitedHealth Group; and the U.S. Department of Veterans Affairs Office of Health Equity. 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: 978-0-309-45789-7
International Standard Book Number-10: 0-309-45789-0
Digital Object Identifier: https://doi.org/10.17226/24741
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Copyright 2018 by the National Academy of Sciences. All rights reserved.
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. People living with disabilities: Health equity, health disparities, and health literacy: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/24741.
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PLANNING COMMITTEE ON PEOPLE LIVING WITH DISABILITIES: HEALTH EQUITY, HEALTH DISPARITIES, AND HEALTH LITERACY1
MARIN P. ALLEN, Deputy Associate Director for Communications and Public Liaison and Director of Public Information, National Institutes of Health
WILMA ALVARADO-LITTLE, Principal and Founder, Alvarado-Little Consulting, LLC
CINDY BRACH, Senior Health Policy Researcher, Agency for Healthcare Research and Quality
IRENE DANKWA-MULLAN, Deputy Director and Medical Officer, Division of Scientific Programs, National Institute on Minority Health and Health Disparities, National Institutes of Health
VANESSA NEHUS, Principal Investigator, Partners for Inclusive Communities, University of Arkansas
CHRISTINE RAMEY, Deputy Director, Office of Health Equity, Health Resources and Services Administration
MELISSA A. SIMON, Vice Chair of Clinical Research, Department of Obstetrics and Gynecology, George H. Gardner Professor of Clinical Gynecology, Associate Professor of Obstetrics and Gynecology, Preventive Medicine and Medical Social Sciences, Northwestern University Feinberg School of Medicine
HEATHER WILLIAMSON, Assistant Professor, Department of Occupational Therapy, Northern Arizona University
Project Staff
KAREN ANDERSON, Senior Program Officer
MELISSA FRENCH, Program Officer
LYLA HERNANDEZ, Senior Program Officer
ANNA MARTIN, Senior Program Assistant
ALEXIS WOJTOWICZ, Senior Program Assistant
ROSE MARIE MARTINEZ, Senior Board Director, Board on Population Health and Public Health Practice
___________________
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 rapporteur and the institution.
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ROUNDTABLE ON THE PROMOTION OF HEALTH EQUITY1
ANTONIA M. VILLARRUEL (Chair), Professor and Margaret Bond Simon Dean of Nursing, University of Pennsylvania School of Nursing
PATRICIA BAKER, President and CEO, Connecticut Health Foundation
JULIE A. BALDWIN, Professor, Department of Health Sciences, College of Health and Human Services, Northern Arizona University
GILLIAN BARCLAY, Healthcare Industry Specialist, Nevada Governor’s Office of Economic Development
REBECCA BRUNE, Senior Vice President, Strategic Planning and Growth, Methodist Healthcare Ministries of South Texas, Inc.
NED CALONGE, President and CEO, The Colorado Trust
LUTHER T. CLARK, Executive Director of Global Scientific Medical and Patient Perspective, Office of the Chief Medical Officer, Merck & Co., Inc.
FRANCISCO GARCÍA, Director and Chief Medical Officer, Pima County Department of Health
J. NADINE GRACIA, Deputy Assistant Secretary for Minority Health, Office of Minority Health, U.S. Department of Health and Human Services
JEFFREY A. HENDERSON, President and CEO, Black Hills Center for American Indian Health
EVE J. HIGGINBOTHAM, Vice Dean, Perelman School of Medicine, University of Pennsylvania
CARA V. JAMES, Director, Office of Minority Health, Centers for Medicare & Medicaid Services
MELENIE MAGNOTTA, Director of Operations, Aetna Foundation
OCTAVIO N. MARTINEZ, Executive Director, Hogg Foundation for Mental Health, Associate Vice President, Division of Diversity and Community Engagement, Clinical Professor, School of Social Work, The University of Texas at Austin
NEWELL E. McELWEE, Assistant Vice President, Market Partners, Center for Observational and Real World Evidence, Merck Research Laboratories, Merck & Co., Inc.
PHYLLIS D. MEADOWS, Senior Fellow, Health Program, The Kresge Foundation
CHRISTINE RAMEY, Deputy Director, Office of Health Equity, Health Resources and Services Administration
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteur and the institution.
MELISSA A. SIMON, Vice Chair of Clinical Research, Department of Obstetrics and Gynecology, George H. Gardner Professor of Clinical Gynecology, Associate Professor of Obstetrics and Gynecology, Preventive Medicine and Medical Social Sciences, Northwestern University Feinberg School of Medicine
PATTIE TUCKER, Associate Director for Health Equity, Division of Community Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention
UCHE S. UCHENDU, Executive Director, Office of Health Equity, U.S. Department of Veterans Affairs
ROHIT VARMA, Grace and Emery Beardsley Professor and Chair, University of Southern California (USC) Department of Ophthalmology, Director, USC Eye Institute, Associate Dean for Strategic Planning and Network Development, Keck School of Medicine, University of Southern California
WINSTON F. WONG, Medical Director, Community Benefit Director, Disparities Improvement and Quality Initiatives, Kaiser Permanente
Health and Medicine Division Staff
KAREN M. ANDERSON, Senior Program Officer
ANNA W. MARTIN, Senior Program Assistant
ROSE MARIE MARTINEZ, Senior Board Director, Board on Population Health and Public Health Practice
ROUNDTABLE ON HEALTH LITERACY1
BERNARD ROSOF (Chair), Chief Executive Officer, Quality in Healthcare Advisory Group, LLC
MARIN P. ALLEN, Deputy Associate Director for Communications and Public Liaison and Director of Public Information, National Institutes of Health
WILMA ALVARADO-LITTLE, Principal and Founder, Alvarado-Little Consulting, LLC
SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of Biomedical Informatics, Columbia University
CINDY BRACH, Senior Health Policy Researcher, Agency for Healthcare Research and Quality
GEM DAUS, Public Health Analyst, Health Resources and Services Administration
TERRY DAVIS, Professor of Medicine and Pediatrics, Louisiana State University Health Sciences Center
CHRISTOPHER DEZII, Director, Healthcare Quality and Performance Measures, Bristol-Myers Squibb Company
JENNIFER DILLAHA, Medical Director for Immunizations, Medical Advisor, Health Literacy and Communication, Arkansas Department of Health
JAMES (JAY) DUHIG, Head, Risk Communication and Behavioral Systems, Office of Patient Safety, AbbVie Inc.
ALICIA FERNANDEZ, Professor of Clinical Medicine, University of California, San Francisco
LAURIE FRANCIS, Senior Director of Clinic Operations and Quality, Oregon Primary Care Association
LORI HALL, Advisor, Health Health Literacy, Eli Lilly and Company
LINDA HARRIS, Division Director, Health Communication and eHealth Team, U.S. Department of Health and Human Services
BETSY L. HUMPHREYS, Acting Director, National Library of Medicine
MARGARET LOVELAND, Senior Director, Global Medical Affairs, Merck Sharpe & Dohme Corp.
LAURIE MYERS, Global Health Literacy Director, Merck Sharpe & Dohme Corp.
CATINA O’LEARY, President and Chief Executive Officer, Health Literacy Missouri
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteur and the institution.
MARYLYNN OSTROWSKI, Executive Director, Aetna Foundation
MICHAEL PAASCHE-ORLOW, Associate Professor of Medicine, Boston University School of Medicine
TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners
KIM PARSON, Strategic Consultant, Proactive Care Strategies, Humana
KAVITA PATEL, Managing Director for Clinical Transformation and Delivery, The Brookings Institution
ANDREW PLEASANT, Senior Director for Health Literacy and Research, Canyon Ranch Institute
LINDSEY A. ROBINSON, Thirteenth District Trustee, American Dental Association
STACEY ROSEN, Associate Professor of Cardiology, and Vice President, Women’s Health, The Katz Institute for Women’s Health, Hofstra North Shore–Long Island Jewish School of Medicine
RIMA RUDD, Senior Lecturer on Health Literacy, Education, and Policy, Harvard School of Public Health
STEVEN RUSH, Director, Health Literacy Innovations, UnitedHealth Group
PAUL M. SCHYVE, Senior Advisor, Healthcare Improvement, Joint Commission
MICHAEL VILLAIRE, Chief Executive Officer, Institute for Healthcare Advancement
EARNESTINE WILLIS, Kellner Professor in Pediatrics, Medical College of Wisconsin
MICHAEL WOLF, Professor, Medicine and Learning Sciences, Associate Division Chief–Research Division of General Internal Medicine, Northwestern University Feinberg School of Medicine
WINSTON F. WONG, Medical Director, Community Benefit Director, Disparities Improvement and Quality Initiatives, Kaiser Permanente
Consultant
RUTH PARKER, Professor of Medicine, Pediatrics, and Public Health, Emory University School of Medicine
Health and Medicine Division Staff
LYLA M. HERNANDEZ, Senior Program Officer
MELISSA FRENCH, Program Officer
ALEXIS WOJTOWICZ, Senior Program Assistant (from May 2016)
ROSE MARIE MARTINEZ, Senior Board Director, Board on Population Health and Public Health Practice
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:
HANK HOANG, Center for Drug Evaluation and Research, U.S. Food and Drug Administration
ALICE M. HOROWITZ, University of Maryland School of Public Health
TERRI ANN PARNELL, Health Literacy Partners
MICHAEL VILLAIRE, Institute for Healthcare Advancement
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 ENRIQUETA BOND, Burroughs Wellcome Fund. She was responsible for making certain that an indepen-
dent 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 and the National Academies.
Acknowledgments
The roundtables are grateful to the sponsors of the National Academies of Sciences, Engineering, and Medicine’s Roundtable on the Promotion of Health Equity and the Roundtable on Health Literacy, who made it possible to plan and conduct the workshop on the relevance of health equity, health disparities, and health literacy to persons living with disabilities, which this Proceedings of a Workshop summarizes. Federal sponsorship was provided by the Agency for Healthcare Resources and Quality; Health Resources and Services Administration; National Institutes of Health; National Library of Medicine; Office of Disease Prevention and Promotion; Office of Minority Health at the Centers for Medicare & Medicaid Services; and the U.S. Department of Veterans Affairs Office of Health Equity. Non-federal sponsorship was provided by Abbvie Inc.; Aetna Foundation; American Dental Association; Bristol-Myers Squibb; The Colorado Trust; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Media; Health Literacy Partners; Humana; Institute for Healthcare Advancement; The Kresge Foundation; Merck Sharpe & Dohme Corp.; Northwell Health; and UnitedHealth Group.
The workshop presentations and subsequent discussions were both interesting and stimulating, and the roundtables would like to thank each of the speakers and panel moderators. Speakers and moderators were, in alphabetical order, Susan Aarup, Toyin Ajayi, Marin P. Allen, Katherine Bishop, Sherman Gillums, Jr., Susan M. Havercamp, Robert (Bob) E. Johnson, Diane Kearns, Beth Marks, Karen L. Marshall, Monika Mitra, Vanessa Nehus, Michael Paasche-Orlow, Rosa Palacios, Christine Ramey, Bernard Rosof, Melissa Simon, Eva Marie Stahl, Antonia Villarruel, Heather J. Williamson, Tom Wilson, and Silvia Yee.
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Contents
Organization of the Proceedings of a Workshop
Health Disparities and Equity at the Intersections of Disability, Race, and Ethnicity
Translating Coverage into Health Equity: The Role of Health Literacy in Healthy Living
Family and Caregiver Perspectives
Raising a Child with Multiple Disabilities
4 PROVIDER AND SYSTEM BARRIERS
Physical and Navigation Barriers
Boxes, Figure, and Table
BOXES
4-1 Methods Used in Focus Group Studies to Identify Health Care Barriers
5-1 The Shared Vision of New York’s DSRIP and START Programs
FIGURE
2-1 Physical disability by race/ethnicity from the National Health Information Survey
TABLE
2-1 Vulnerable Populations Targeted by Community Catalyst’s Projects
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Acronyms and Abbreviations
ACA | Patient Protection and Affordable Care Act |
ADA | Americans with Disabilities Act |
ADAPT | Americans Disabled Attendant Programs Today |
AHRQ | Agency for Healthcare Research and Quality |
AIAN | American Indian and Alaska Native |
ASL | American Sign Language |
CBO | community-based organization |
CDC | Centers for Disease Control and Prevention |
CHIPRA | Children’s Health Insurance Program Reauthorization Act |
CLASS | Community Living Assistance and Support Services |
CMS | Centers for Medicare & Medicaid Services |
DALY | disability-adjusted life year |
DoD | U.S. Department of Defense |
DSRIP | Delivery System Reform Incentive Payment |
EHR | electronic health record |
HCS | Home Community-Based Service |
HEDIS | Healthcare Effectiveness Data and Information Set |
HHS | U.S. Department of Health and Human Services |
MDCP | Medically Dependent Children Program |
NH | non-Hispanic |
NHIS | National Health Interview Survey |
NHPI | Native Hawaiian and other Pacific Islander |
NIH | National Institutes of Health |
NY-START | New York Systemic, Therapeutic, Assessment, Resource, and Treatment system |
PACE | Program for All-Inclusive Care of the Elderly |
PTSD | posttraumatic stress disorder |
SSI | Supplemental Security Income |
STAR | State of Texas Access Reform |
START | Systemic, Therapeutic, Assessment, Resource, and Treatment |
UCEDD | University Center for Excellence in Developmental Disabilities |
UNH | University of New Hampshire |
VA | U.S. Department of Veterans Affairs |
WHO | World Health Organization |