1. Consumer Engagement in Reform Implementation: A Roadmap for Funders and Advocates Preliminary Report Susan Sherry Community Catalyst GIH Audioconference December 2009 Work Supported by the Public Welfare Foundation

2. Image: avecteatre.wikispaces.com Passing Reform Legislation Making Health Reform Work © Community Catalyst 2009

3. Overview of Presentation The Work Ahead Lessons from Prior Implementation Capacities Required Defining Reform to Public Policy and Regulatory Demands State Actions Key Success of Reform On-the-Ground Infrastructure Needs Role of Funders © Community Catalyst 2009

4. The Work Ahead Maintain and expand public support for national reform Protecting existing coverage (Medicaid, CHIP, etc.) Implementation Making improvements in the law New opportunities and unaddressed issues © Community Catalyst 2009

5. What We Have to Do Define reform to the public Policy and regulatory work Intensive and complex New federal/state paradigm Make it work on the ground Grassroots infrastructure & systemic feedback Health delivery system – quality and cost Population health © Community Catalyst 2009

6. Lessons from Prior Implementations – SCHIP, TN, FL, MA, ME and Others Consumer feedback improves policies Advocates encourage transparency and play unique intermediary role with public Agency relationships are important Documenting how reform is working is valuable Implementation happens in many places and requires resources for a set of integrated core advocacy capacities. © Community Catalyst 2009

7. Capacities Required “Consumer Health Advocacy: A View from 16 States” (2006) found strong systems of advocacy make a difference in all environments Effective advocacy requires coordination across state and local organizations of six core capacities Grassroots organizing Policy analysis Coalition – stakeholder alliances Campaign Communications Resource development © Community Catalyst 2009

8. Capacities Have Grown Since 2006 – significant investment in building systems and learning community CVC – RWJ - 18 states SHP – PWF – 11 states Many other national and local funders in above states and in NH, MO, NM, and others Advocates developed strong relations with both state and federal policymakers State infrastructure and learning community in place © Community Catalyst 2009

9. Defining Reform to the Public Defending against attacks 2010 elections – key battlegrounds in specific states State referendum, “symbolic” legislation, linking state budget crises and Medicaid with reform Proactive engagement Public education Recognition of specific progress along the way Acknowledging specific problems (and solutions) © Community Catalyst 2009

10. Defining Reform to the Public: What is Needed Coordinated national opinion research and messaging support including “rapid response” capacity Ongoing public education Build a grassroots base Continued local communications with federal and state policymakers Engage with referendum and legal attacks Electoral support © Community Catalyst 2009

11. Policy and Regulatory Federal and state interaction – two-way street States will have significant implementation role (see NASHP policy brief) Issues include: Medicaid/CHIP Insurance reform and exchanges Affordability State fiscal and revenue issues Safety net Delivery system reform © Community Catalyst 2009

12. Policy and Regulatory: What is Needed Coordinated national consumer organizations to monitor, analyze and address consumer concerns at federal level Build new state advocate policy expertise State (and federal) governments under-resourced states will rely on well-organized interests for policy development state consumer advocates must be well-organized Build stronger stakeholder relations at state level © Community Catalyst 2009

13. States Will Influence Success of Reform in Different Ways “Leader” (proactive) states will push envelope on cost/quality issues to move national agenda further “Defensive” states (many southern) have largest access, quality and disparities issues – success here gives real meaning to national reform “Intermediate” (purple) states have disproportionate influence on sustaining national political will Individual states have specific significance (NV) © Community Catalyst 2009

14. State Political Environments Vary Widely (2008 Electoral Map) Image: dashboardinsight.com © Community Catalyst 2009

15. Making It Work On the Ground Consumer representation Consumer assistance/feedback New/unfinished business Health equity Delivery reform in proactive states – new models Delivery issues in defensive states – low income Community benefits – population health Grassroots advocacy and mobilization Strengthening stakeholder relations © Community Catalyst 2009

16. Needs Immediate need for both defense and implementation Develop new expertise in new issue areas Coordination among national organizations – division of labor Collaboration and coordination between state-based and national organizations Strengthen and build state systems of advocacy and campaigns Resources from a variety of sources (c(3), c(4),and electoral activity) © Community Catalyst 2009

17. Image: theyoungconservative.wordpress.com © Community Catalyst 2009 Stay the Course! Role of Funders Mission not accomplished - - - - -

18. Role of Funders Foster collaboration among national organizations Support new expertise Invest in state-based systems of advocacy Engage in multiple arenas – state and federal, implementation, public education Build new funding partnerships © Community Catalyst 2009

19. Community Catalyst, Inc. 30 Winter Street, 10th Fl. Boston, MA 02108 617-338-6035 Fax: 617-451-5838 www.communitycatalyst.org Community Catalyst is a national non-profit advocacy organization dedicated to quality affordable health care for all. Since 1997, Community Catalyst has been working in partnership with national, state and local consumer organizations, policymakers, and foundations to build the consumer and community leadership required to transform the American health system so it serves everyone—especially vulnerable members of society. Our staff of experienced policy analysts, attorneys, community organizers, and communications specialists has worked with organizations in over 40 states. From Oregon to Orlando, Community Catalyst strengthens organized consumer voices wherever important decisions about the health system are made: in communities when hospitals go up for sale; in courtrooms where consumers challenge the illegal practices of drug companies; and in statehouses when advocates strive to win improvements in health care programs. Presented by Susan Sherry Electronic copies of this presentation are available by calling 617-338-6035. Organizations seeking to distribute or otherwise make widespread use of this publication are asked to notify Community Catalyst. Work supported by the Public Welfare Foundation © Community Catalyst 2009