Consumer Health Advocacy: a View from 16 States
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The Color of Medicine: Strategies for Increasing Diversity Consumerin the U.S. Physician Health W orkforceAdvocacy: A View from 16 States Reprinted June 2004 October 2006 This report was written with Community Catalyst, Inc. A report prepared by Community Community30 Winter S treet,Catalyst, 10th Inc. Floor support from the th Catalyst with support from the 30Boston, Winter MA St. 1002108 Floor W. K. Kellogg Foundation. W. K. Kellogg Foundation. Boston,617-338-6035 MA 02108 617.338.6035Fax: 617-451-5838 Fax:www 617.451.5838.communitycatalyst.org www.communitycatalyst.org CONSUMER H EALT H ADVO C A C Y : A View from 16 States Acknowledgments Community Catalyst would like to express its profound gratitude to all of the individuals we spoke with across the country and within each of the 16 states for their time, their candor, and, most of all, for the enormously challenging work they do every day. We would also like to thank Marty Liebowitz and Lois Uttley for their assistance in writing and editing, and the members of our Project Advisory Committee and other individuals who took the time to read and comment on various drafts. Community Catalyst would also like to express its deep respect for the dedication and hard work of the consumer health advocates and grassroots groups “on the ground” who are fighting to assure that disenfranchised people have a greater voice in the health system. The willingness of these colleagues to take their valuable time to talk with us and assist in this study is very much appreciated. We hope that the study and the follow-up to it will result in greater support for their critical work. We look forward to continuing our work together to build a health care system that is more just, equitable, and responsive to the people who use it. And finally, we are also very grateful to the W. K. Kellogg Foundation for its support of this project. The Foundation’s commitment to building and strengthening consumer voices has been steadfast. ©Community Catalyst, Inc. October 2006 I CONSUMER H EALT H ADVO C A C Y : A View from 16 States Table of Contents E XE C UTIVE S UMMARY 2 PART 1 I NTRODU C TION AND B A C KGROUND The Importance of Consumer Health Advocacy in the States 6 Our Assessment Approach 10 PART 2 TH E A SSESSMENT Introduction 14 Current Issue Focus of Health Care Advocates 14 Organizational Capacity 16 Funding Support for Consumer Health Advocacy 27 State Political and Economic Environments 29 Stages of Health Advocacy Impact 32 PART 3 R E C OMMENDATIONS 36 PART 4 S TATE R E P ORTS 41 Arkansas 42 Florida 47 Georgia 53 Louisiana 59 Mississippi 64 Kansas 69 Michigan 74 New Mexico 79 Ohio 85 Oregon 90 Colorado 95 Connecticut 102 Illinois 108 Maryland 113 Massachusetts 119 New Jersey 125 A pp ENDI C ES Appendix A: Study Methodology A-1 Appendix B: National Organization Contacts B-1 Appendix C: State Contacts C-1 Appendix D: Interview Questions D-1 Appendix E: Survey Questions E-1 ©Community Catalyst, Inc. October 2006 III CONSUMER H EALT H ADVO C A C Y : A View from 16 States Executive Summary B A C KGROUND For more than a decade, significant aspects of health policy decision-making have been shifting from the federal government to the states. Important decisions about Medicaid eligibility and benefits, children’s health insurance, hospital care for the indigent, and other health access issues are now made in state capitals instead of Washington. At the same time, the number of uninsured Americans – and those with inadequate coverage – continues to rise, while health care reform efforts at the federal level are stymied. Taken together, these realities have prompted a focus on states as the place where health policy is most likely to be made. What is actually happening in state capitals and communities across the nation as these trends play out and crucial health policy decisions are being made? Can health care consumers actively participate in health policymaking? What political, economic, and organizational factors are making consumer health advocacy successful in some states and extremely challenging in others? No national study has sought the answers to these questions, which are important not only to health advocacy organizations but also to policymakers, health funders, and scholars studying the evolution of health policymaking in the United States. Because of its organizational focus on state and community- level consumer health advocacy, Community Catalyst undertook an in-depth study of consumer health advocacy in a representative sample of 16 states: Arkansas, Colorado, Connecticut, Florida, Georgia, Illinois, Kansas, Louisiana, Maryland, Massachusetts, Michigan, Mississippi, New Jersey, New Mexico, Ohio, and Oregon. Funding for the study was provided by the W. K. Kellogg Foundation. M ET H ODOLOGY Community Catalyst staff conducted more than 200 interviews with key people in the selected states, including leaders of advocacy, grassroots, and constituency organizations; legislators and other political leaders; and policy experts, funders, and other stakeholders in health care decision-making. In addition, more than 70 key health advocacy organizations completed a detailed survey. Other relevant data and information were gathered through a review of the literature and from health care databases. KEY O B SERVATIONS Health care access problems are serious – and growing –in each of the 16 states. Across the 16 states, millions of people are unable to get the care they need. This is true even in states with relatively expansive public programs and high rates of employer-based coverage. Interviewees in all of the study states reported that numbers of uninsured people are growing, and that lack of health care access is an increasingly important problem for the people and communities they serve. As one interviewee put it, “What is most shocking is how many more uninsured there are. It is almost to the point that people don’t expect to have access anymore.” 2 ©Community Catalyst, Inc. October 2006 CONSUMER H EALT H ADVO C A C Y : A View from 16 States Health care policies and access differ significantly among the states. Important policy differences among the study states have, in turn, a significant impact on how many people have access to care in each state. For example, in Illinois, parents with incomes up to 185 percent of the poverty level ($37,000 for a family of four) are eligible for Medicaid. By contrast, in Maryland, only parents whose incomes are at or below 35 percent of the poverty level ($7,000 or less for a family of four) are eligible for Medicaid. Strong state-based consumer health advocacy can make an important difference in a broad range of state environments. Consumer advocates across the 16 study states are influencing policy decisions on a wide range of issues affecting health care access. These issues include: Medicaid eligibility and benefits; tobacco taxes; free care and hospital financial assistance; employer-sponsored insurance coverage; insurance affordability; and tax and budget policies. Consumer advocacy has had a significant impact, both in promoting innovative new health policies and in defending against proposed cutbacks in health coverage and access. In a few states, consumer health advocacy is creating momentum for significant health policy innovation. In a few of the study states, consumer-based advocacy organizations have put expanding access to affordable, quality care for all residents high on the political agenda. Two of these states, Illinois and Massachusetts, demonstrate the potential power of consumer advocacy to achieve broad health care reform. In these states, advocates have successfully promoted a broad range of interrelated policy changes that respond to the needs of both people using the system and those who are shut out of it. The result has been an expansion of public and private sector access to health coverage and care. Three key factors are influencing the ability of consumer advocacy to shape state health policy outcomes. Why are consumer advocacy organizations in some states more successful in moving forward a consumer health agenda? The study concluded that three factors influence the ability of consumer advocacy to shape health policy outcomes: 1. Organizational capacities of consumer organizations. Such capacities include the abilities to: analyze complex legal and policy issues; use media and other communications strategies to build timely public and political support for reform and weaken opposition arguments; build a strong grassroots base of support; build and sustain strong, broad-based coalitions and maintain strategic alliances with other stakeholders; and generate resources from diverse sources for infrastructure and core functions as well as for campaigns. 2. Funding support for consumer health advocacy. Resource availability correlates with state advocacy capacity. The states with the greatest advocacy capacity also had the most funding support for consumer health advocacy. The study found a positive, ongoing relationship between funders and health advocacy organizations in those states. ©Community Catalyst, Inc. October 2006 3 CONSUMER H EALT H ADVO C A C Y : A View from 16 States Executive Summary (Continued) 3. The political and economic environment. The study found a wide range of political and economic environments among the 16 states. Key elements include: per capita income; rates of private health insurance coverage; the impact of tax policies on revenues for health care access; politicians’ willingness to use public revenue