Disability, Long-term Care, and Health Care in the 21st Century

Some people say that a picture is worth a thousand words. The field of management often uses a 'rich picture' systems methodology, 'an innovative tool that encapsulates knowledge relevant to strategic reform'. It is often described in the management literature as a 'soft systems methodology' for linking hard and soft facts in a cartoon-like representation to illustrate a complex problem simply and clearly. The following research is presented using the rich picture methodology to capture the current long-term care and long-term services and supports (LTSS) crisis. The picture and narrative rely on expert research from the past and present, as well as on one-on-one open-ended interviews with key stakeholders in the fields of disability, long-term care, and health care. The setting for the rich picture is the ocean, with the current LTSS ship heading toward an iceberg that represents the barriers and challenges to systems reform.The 'cast' for this rich picture will provide the substantive descriptions and body of research and analysis about the barriers and challenges of navigating through the current system of LTSS. The presentation of the research is purposeful, so that the reader and the researcher can begin the voyage together with a snapshot of the problem. The purpose of this research is to produce new knowledge and understanding of current experience with and future need for affordable LTSS for people with disabilities. This research on the State of LTSS Financing and Systems Reform is the first part in a five-part series that will tell the story of the current LTSS system to set the stage for the exploration of future market demands and current gaps in supply; to explore promising state practices and challenges; and, to picture what the 21st century's comprehensive, consumer-responsive system might look like and make policy recommendations.The research is based on five assumptions. First, people with disabilities, whether young or old, desire and deserve choices when seeking assistance with daily living that maintains their self-determination and maximum dignity and independence. Second, the current financing mechanisms (public and private) will become unsustainable in the near future without significant reform. The system must be affordable to all Americans regardless of income levels and must consider opportunities to leverage public and private support in new ways without impoverishing beneficiaries.Third, there is an opportunity with the changing demographic picture of the United States to explore the possibilities of a universal approach to the design and financing of services and supports that is responsive to individuals under the age of 65, as well as seniors with disabilities, without sacrificing individual choice and flexibility. Fourth, formal and informal caregiving must be sustained, examining family needs and workforce recruitment and retention challenges. Fifth, the approach to quality must examine consumer direction and control of resources in addition to traditional external quality assurance mechanisms. DISABILITY, LONG-TERM CARE, AND HEALTH CARE IN THE 21ST CENTURY......Page 3 NOTICE TO THE READER......Page 6 CONTENTS......Page 7 PICTURING THE PROBLEM......Page 9 CHARTING THE COURSE......Page 13 CONFUSION AND MISPERCEPTIONS......Page 17 ATTITUDES AND PREFERENCES......Page 18 LACK OF POLITICAL AND PUBLIC WILL......Page 19 NEW LANGUAGE AND DEFINITIONS......Page 21 HEALTH OUTCOMES—ANOTHER REASON FOR REFORM......Page 22 HISTORY AS PROLOGUE......Page 25 EVOLUTION OF AMERICAN CULTURE AND ITS PHILOSOPHYOF CARING—1800S......Page 27 EARLY SETTLEMENT AND PAUPER LAWS......Page 29 20TH CENTURY—FROM CHARITY CARE TO FOR-PROFIT CARE......Page 30 MEET MARY......Page 33 UNDER AGE 65......Page 34 ENTRANCE REQUIREMENTS......Page 35 UNEMPLOYMENT AND ADLS AND IADLS......Page 36 RECIPIENTS OF SUPPLEMENTAL SECURITY INCOME AND SOCIAL SECURITY DISABILITY INSURANCE......Page 37 SSDI RECIPIENTS......Page 38 SUPPLEMENTAL SECURITY INCOME PROGRAM......Page 39 CHRONIC ILLNESS AND THE NEED FOR LONG-TERM SERVICES AND SUPPORTS......Page 40 DUAL ELIGIBILITY—RECIPIENTS OF BOTH MEDICAID AND MEDICARE......Page 41 ONE SIZE DOES NOT FIT ALL......Page 42 BACK TO MARY......Page 44 CAREGIVER CREW......Page 45 WORKFORCE CHALLENGES......Page 49 FEDERAL DECISION-MAKING CREW......Page 50 STATE CREWS......Page 52 FUELING THE ENGINE......Page 55 Medicaid Program......Page 57 Medicaid Home- and Community-Based Services Waiver Program......Page 59 Medicare Programs (Part A and Part B)......Page 60 MEDICAID AND MEDICARE......Page 63 OTHER QUALITY-OF-LIFE DOMAINS......Page 64 HOUSING......Page 65 TRANSPORTATION......Page 66 NUTRITION......Page 69 ASSISTIVE TECHNOLOGY......Page 70 CAREGIVER SUPPORT......Page 72 PUSHING TUGBOATS......Page 75 CASH AND COUNSELING DEMONSTRATIONS......Page 76 ESTABLISHMENT OF AGING AND DISABILITY RESOURCE CENTERS......Page 77 REAL CHOICE SYSTEMS CHANGE GRANTS......Page 78 CONCLUSION......Page 80 AMERICANS WITH DISABILITIES ACT......Page 83 THE OLMSTEAD DECISION......Page 84 NEW FREEDOM INITIATIVE......Page 85 GATHERING CLOUDS......Page 87 Rodriguez v. City of New York (1999)......Page 90 INSTITUTIONALIZATION IS NOT A PREREQUISITE FOR INDIVIDUALS TO BE COVERED BY TITLE II: REDUCING BENEFITS TO THOSE OUTSIDE OF INSTITUTIONAL SETTINGS WHILE MAINTAINING BENEFITS TO THOSE IN INSTITUTIONAL SETTINGS: FISHER V. OKLAHOMA HEALTHCARE AUTHORITY (2003)......Page 91 ACCESS TO QUALITY CARE IN COMMUNITY SETTINGS: BALL V. BIEDESS (2004)......Page 92 CONCLUDING THOUGHTS......Page 95 CHECKLIST OF CHALLENGES......Page 97 Forecast: Prepare to Navigate Choppy Waters and Difficult Storms......Page 98 WORDS FOR SAFE TRAVEL......Page 99 COMPARING CAREGIVER CHARACTERISTICS BY AGE OF RECIPIENT......Page 101 DEMOGRAPHIC PROFILE OF CAREGIVERS BY AGE OF RECIPIENT......Page 103 FEDERAL DEMONSTRATIONS......Page 105 OVERVIEW OF CASH AND COUNSELING DEMONSTRATIONS......Page 109 50 STATES, THE DISTRICT OF COLUMBIA, AND U.S. TERRITORIES WITH INITIATIVES TO IMPROVE ACCESS TO LONG-TERM CARE SERVICES......Page 111 FEDERAL TABLES(CONTINUED ON NEXT PAGE)......Page 113 CONGRESSIONAL OVERSIGHT OF FEDERAL PROGRAMS......Page 135 INDEX......Page 163 Some people say that a picture is worth a thousand words. The field of management often uses a “rich picture” systems methodology, “an innovative tool that encapsulates knowledge relevant to strategic reform.” It is often described in the management literature as a “soft systems methodology” for linking hard and soft facts in a cartoon-like representation to illustrate a complex problem simply and clearly. The following research is presented using the rich picture methodology to capture the current long-term care and long-term services and supports (LTSS) crisis. The picture and narrative rely on expert research from the past and present, as well as on one-on-one open-ended interviews with key stakeholders in the fields of disability, long-term care, and health care. The setting for the rich picture is the ocean, with the current LTSS ship heading toward an iceberg that represents the barriers and challenges to systems reform. The “cast” for this rich picture will provide the substantive descriptions and body of research and analysis about the barriers and challenges of navigating through the current system of LTSS. The presentation of the research is purposeful, so that the reader and the researcher can begin the voyage together with a snapshot of the problem. The purpose of this research is to produce new knowledge and understanding of current experience with and future need for affordable LTSS for people with disabilities. This research on the State of LTSS Financing and Systems Reform is the first part in a five-part series that will tell the story of the current LTSS system to set the stage for the exploration of future market demands and current gaps in supply; to explore promising state practices and challenges; and to picture what the 21st century's comprehensive, consumer-responsive system might look like and make policy recommendations. The research is based on five assumptions. First, people with disabilities, whether young or old, desire and deserve choices when seeking assistance with daily living that maintains their self-determination and maximum dignity and independence. Second, the current financing mechanisms (public and private) will become unsustainable in the near future without significant reform. The system must be affordable to all Americans regardless of income levels and must consider opportunities to leverage public and private support in new ways without impoverishing beneficiaries. Third, there is an opportunity with the changing demographic picture of the United States to explore the possibilities of a universal approach to the design and financing of services and supports that is responsive to individuals under the age of 65, as well as seniors with disabilities, without sacrificing individual choice and flexibility. Fourth, formal and informal caregiving must be sustained, examining family needs and workforce recruitment and retention challenges. Fifth, the approach to quality must examine consumer direction and control of resources in addition to traditional external quality assurance mechanisms. Picturing the problem Charting the course Forecasting the need Dragging anchor Introducing the captain Meeting the crew Fueling the engine Pushing tugboats Harnessing favorable winds Gathering clouds Recharting the course.