Financing Long-Term Services and
Supports for Individuals with
Disabilities and Older Adults

WORKSHOP SUMMARY

Tracy A. Lustig and Steve Olson, Rapporteurs

Forum on Aging, Disability, and Independence

Board on Health Sciences Policy

Division of Behavioral and Social Sciences and Education

           INSTITUTE OF MEDICINE AND       
NATIONAL RESEARCH COUNCIL
                         OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary was ap- proved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. This activity was supported by contracts between the National Academy of Sci- ences and the Gerontological Society of America, LeadingAge, PHI, The SCAN Foundation (Contract No. 12-004), United HealthCare, the U.S. Department of Defense (Contract No. HT0011-11-P-0212), the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research (Contract No. ED- OSE-12-P-0066), the U.S. Department of Health and Human Services’ Admin- istration for Community Living (Contract No. HHSP233201100668P), the U.S. Department of Labor (Contract No. 4431), and the U.S. Department of Veterans Affairs (Contract No. VA268-12-P-0014). The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity. International Standard Book Number-13: 978-0-309-29406-5 International Standard Book Number-10: 0-309-29406-1 Additional copies of this workshop summary are available for sale from the Na- tional Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2014 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent ad- opted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine) and NRC (National Research Council). 2014. Financing long-term services and supports for individuals with disabilities and older adults: Workshop summary. Washington, DC: The National Academies Press.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding en- gineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is presi- dent of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Insti- tute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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PLANNING COMMITTEE FOR A WORKSHOP ON FINANCING LONG-TERM SERVICES AND SUPPORTS FOR INDIVIDUALS WITH DISABILITIES AND OLDER ADULTS: TRENDS, IMPLICATIONS, AND OPPORTUNITIES1 JOHN W. ROWE (Chair), Professor, Columbia University MARGARET L. CAMPBELL, Senior Scientist for Planning and Policy Support, National Institute on Disability and Rehabilitation Research LISA I. IEzzONI, Professor of Medicine, Harvard Medical School; and Director, Mongan Institute for Health Policy, Massachusetts General Hospital ROBERT JARRIN, Senior Director of Government Affairs, Qualcomm Incorporated BARBARA B. MANARD, Vice President, Long Term Care Health Strategies, LeadingAge RENé SEIDEL, Vice President, Programs and Operations, The SCAN Foundation 1 Institute of Medicine and National Research Council planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The re- sponsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

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IOM-NRC FORUM ON AGING, DISABILITY, AND INDEPENDENCE1 ALAN M. JETTE (Co-Chair), Boston University School of Public Health, MA JOHN W. ROWE (Co-Chair), Columbia University, New York, NY HENRY J. AARON, The Brookings Institution, Washington, DC KELLY BUCKLAND, National Council on Independent Living, Washington, DC JOE CALDWELL, National Council on Aging, Washington, DC MARGARET L. CAMPBELL, National Institute on Disability and Rehabilitation Research, Washington, DC HENRY CLAYPOOL, Administration for Community Living, Washington, DC EILEEN M. CRIMMINS, University of Southern California, Los Angeles STEVEN DAWSON, PHI, Bronx, NY PEGGYE DILWORTH-ANDERSON, Gillings School of Global Public Health, University of North Carolina, Chapel Hill THOMAS E. EDES, U.S. Department of Veterans Affairs, Washington, DC TERRY FULMER, Bouvé College of Health Sciences, Northeastern University, Boston, MA NAOMI L. GERBER, Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, VA ROBERT HORNYAK, Administration for Community Living, Washington, DC LISA I. IEzzONI, Harvard Medical School, Boston, MA JUDITH D. KASPER, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD KATHY KREPCIO, John J. Heldrich Center for Workforce Development, Rutgers, The State University of New Jersey, New Brunswick, NJ NANCY LUNDEBJERG, American Geriatrics Society, New York, NY RHONDA MEDOWS, United HealthCare, Washington, DC LARRY MINNIx, LeadingAge, Washington, DC ARI NE’EMAN, National Council on Disability, Washington, DC RENé SEIDEL, The SCAN Foundation, Long Beach, CA JACK W. SMITH, U.S. Department of Defense, Falls Church, VA TERRIE FOx WETLE, Brown University, Providence, RI 1 Institute of Medicine and National Research Council forums do not issue, review, or approve individual documents. The responsibility for the published summary rests with the workshop rapporteurs and the institution. vii

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IOM and NRC Staff TRACY A. LUSTIG, Forum Director GOOLOO WUNDERLICH, Senior Program Officer, Division of Behavioral and Social Sciences and Education, National Research Council TONIA E. DICKERSON, Senior Program Assistant ANDREW M. POPE, Director, Board on Health Sciences Policy, Institute of Medicine viii

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Reviewers T his workshop summary has been reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent re- view is to provide candid and critical comments that will assist the institu- tion in making its published workshop summary as sound as possible and to ensure that the workshop summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this workshop summary: MAUREEN FITzGERALD, The Arc CONSTANCE GARNER, Foley Hoag, LLP ALICIA H. MUNNELL, Boston College Carroll School of Management DONALD L. REDFOOT, AARP Public Policy Institute Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by CHRISTINE K. CASSEL, National Quality Forum. Appointed by the Institute of Medicine, she was responsible for making certain that an independent examination of this workshop summary was carried out in ac- cordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop summary rests entirely with the rapporteurs and the institution. ix

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Contents 1 INTRODUCTION AND THEMES OF THE WORKSHOP 1 Organization of the Report, 2 Themes of the Workshop, 3 2 THE CHALLENGE 7 The Financing of Long-Term Services and Supports: An Overview, 8 Workforce Issues, 11 Technology, 14 Personal Preferences, 16 3 THE ROLE OF INDIVIDUALS AND FAMILIES 19 Financing Long-Term Services and Supports from Personal Savings, 20 Family Caregiving, 23 4 THE ROLE OF GOVERNMENT 27 Public Income Support Programs for Working-Age People with Disabilities, 28 Medicaid, 32 Social Insurance, 36 xi

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xii CONTENTS 5 THE ROLE OF THE PRIVATE SECTOR 41 Private Long-Term Care Insurance, 42 Expanding Private Long-Term Care and Strengthening Medicaid, 44 Improving Retirement Income Adequacy, 46 6 REFLECTIONS ON THE WORKSHOP 49 People with Disabilities, 50 The Fiscal Prospects, 51 The Choices That Society Makes, 52 REFERENCES 55 APPENDIXES A WORKSHOP AGENDA 57 B SPEAKER BIOGRAPHICAL SKETCHES 63