CIL-NET Presents…

1. CIL-NET Presents… Implementing and Enforcing Olmstead A National Onsite Training The California IL Approach to Olmstead May 11, 2011 Atlanta, Georgia Presenter: Laurel Mildred California Foundation for Independent Living Centers (CFILC) 1

2. Who We Are • Based in our state capitol of Sacramento, the California Foundation for Independent Living Centers is a statewide, non-profit trade organization representing 24 Independent Living Centers. 2

3. CFILC • The mission of the California Foundation for Independent Living Centers is to advocate for barrier-free access and equal opportunity for people with disabilities to participate in community life by increasing the capacity of Independent Living Centers to achieve their missions. • The statewide approach has resulted in strengths in public policy, organizing and technological innovation. 3

4. Topics • CFILC’s Olmstead Project • Our 2010 “Olmstead Summit” • Key Policy Work 4

5. I. Our Olmstead Project Background After receiving ILC community input, the State Independent Living Council and the California Department of Rehabilitation made Olmstead implementation a priority, and designed several grant opportunities intended to advance implementation using American Recovery and Reinvestment Act (ARRA) funds. One of these projects emphasized public policy.

6. Funded Through ARRA • In 2009, CFILC applied for and was awarded the public policy grant from our state Department of Rehabilitation. It is a two-year project. • Our proposal was to re-start a defunct Olmstead Coalition, and to bring policy and training resources to ILCs and other advocates in order to strengthen their capacity to move Olmstead forward.

7. Californians for Olmstead We called our project CALIFORNIANS FOR OLMSTEAD.

8. Mission Statement • The mission of Californians for Olmstead is to work toward community inclusion of all people with disabilities in California through the implementation of the Olmstead decision. We do this by working with people with disabilities to secure public resources and quality support needed for people to live full and equal lives in the community.

9. Broad Strategies • Coalition Building: The Project provides a context for ILCs to work with other organizations, such as aging, disease-specific, and poverty and civil rights advocates. • Deepen Policy Focus: The Project has provided in-depth focus on key issues, and informs and supports the ILC “Systems Change Network” as well as Coalition partners. • Coordination with Transition Services: The Project connects with ILC’s in their role as transition services providers, bringing their hands-on experience into policy advocacy.

10. Major Project Activities • Develop Communications Structure, Website, Facebook Page, Listserv • Revitalize Olmstead Coalition • Hold Monthly Teleconference Meetings • Achieve Public Policy Outcomes (4-6 positive and 4-6 defensive) • Take Advocacy Action and Develop Toolkits • Organize a Series of Trainings

11. Our Initial Assessment of Barriers • Lack of specificity and accountability in California’s Olmstead Plan. • Lack of a “system” in the long term care system, characterized by fragmentation of services and funding, with implications for the individual consumers and the overall budgets for services. • Policymakers’ acknowledgement of the effectiveness of the In Home Supportive Services (IHSS) program in reducing dependence on nursing home services, juxtaposed with policymakers reduction in funding for IHSS.

12. Our Initial Assessment of Barriers, cont’d. • Small federally-funded pilot programs, but no overall commitment to expanding those programs to other areas or other populations. • Huge increases in spending for nursing homes, whose funding is separate from home and community-based services. • Lack of legislative knowledge and leadership on Olmstead and community integration, as compared to legislative mandates in other states.

13. Our Initial Assessment of Barriers, cont’d. 2 • Duplicative use of assessments for long term care users and lack of true care management for those who want it. • Lack of affordable, accessible housing as a major barrier to community integration, with no coordinated effort to overcome this barrier.

14. Situational Analysis: All Budget, All the Time • California’s ever worsening budget problems have put advocates on constant defense over a period of years. • Cuts have impacted all services in the community system of care, and taken together, the UCLA Center for Health Policy estimated that the proposals “turn back the clock 30 years” on California’s long-term care system. Some of these cuts have been defeated, others have become the new normal.

15. And It’s Not Over Yet • This year Governor Jerry Brown proposed, and the Legislature has adopted, $12.5 billion dollars in statewide program cuts (to all programs and services). Balancing our budget now requires $12.5 billion from extending current temporary taxes that are set to expire. • The revenue piece has precipitated a large political battle. • Without resolution, California faces an “All Cuts” budget of an additional $12.5 Billion in reductions.

16. And It’s Not Over Yet, cont’d. • A key challenge of the Project has been to stay active and relevant on fighting devastating cuts while holding the space for a longer-term vision of system change. • We tried to bring valuable budget resources to support advocacy, stay involved in the key long-term system change issues, and set careful priorities for issues to go into in more depth.

17. How We Set Policy Priorities • Foremost Consideration – Achieving Grant Deliverables • Organizational Priorities – CFILC ED Coordinated Work with Systems Change Network and Other ILC Projects • Expressed Concerns of ILC Directors • Expressed Concerns of Coalition Members • Project Manager’s Experience – Discretion to Pursue Critical Policy Issues

18. Our Training Series These will be live, interactive, accessible webinars (Elluminate training platform) • Critical Issues in Olmstead Implementation Overview, Policy Framework and Review of Litigation • There's No Place Like Home The HUD HOME Investment Partnership Presents an Opportunity to Support Housing for People Transitioning From Institutions – with Steve Gold

19. Our Training Series, cont’d. • The Game-Changing Strategy Building an Effective System of Long-term Services and Supports through Implementation of the Federal Affordable Care Act • Follow the Money Using Cost-Effectiveness in Advocacy for Long-term Services and Supports • Getting the Message Out Enhancing Advocacy Through Effective Communication about Olmstead

20. Final Project Outcome • Our final deliverable, due in September, is a blueprint for future action. • This report will be posted on our website.

21. II. California Olmstead Summit • Our Major Year-One Project was to Convene Disability Community Leaders and Advocates from Around the State Around Issues of Olmstead Implementation • We Planned, Collaborated and Shared Costs with our Protection and Advocacy Organization, Disability Rights California

22. II. California Olmstead Summit, cont’d. • In September of 2010, 50 Key Leaders Gathered from Around the State to Hear a Keynote from the Department of Justice and Participate in the Summit. • Day 1 Included 4 Policy Panels Featuring State and National Experts • Day 2 Included a Training in Communications by Public Works; the DEMOS Center for the Public Sector

23. Overview Panel • Reviewed budget cuts that had an Olmstead impact • Assessment of political climate from a key legislative staff ally • Overview of long-term care provisions of health care reform • Academic research that would support removing the institutional bias of Medicaid

24. Legal Strategies Panel • Disability Rights California Reviewed Olmstead Litigation in California • National Senior Citizens Law Center Reviewed National Medicaid Litigation • The Bazelon Center for Mental Health Law Reviewed Critical National Olmstead Litigation

25. Panel on Long-term Care System Reform • Review of Advocacy from 1999 to Now • Using Cost-Effectiveness Arguments in Advocacy • Recommendations from the Author of: Long-term Care Reform in California: Recommendations of the Home and Community-Based Long-term Care Report http://www.hcbs.org/moreInfo.php/source/152/doc/2730/Home_and_Community-Based_Long-Term_Care:_Recommend • Strategies for Moving a Reform Agenda

26. Successful Models Panel • The Developmental Disability System (Our Lanterman Act) • Mental Health Community-Based Models • An Effective County-Based System – San Francisco • Expanding Successful Transition Services in California (California Community Transitions – our Money Follows the Person program)

27. What We Learned from DEMOS Communications Training • Research-based Communications Strategies for Conveying the Positive Role of Government in Addressing the Common Good • Dominant Stories Shape Understanding (Hidden Reasoning) • Critical Role of Master Narratives • Ways We Communicate that Make Things Worse (For Example, Triggering Independence Rather than Interdependence, Conveying Stories of Desperation Rather than Aspiration)

28. What We Achieved • Successful Collaboration with DRC in Planning Event • Developed Outstanding Content • Increased Relationships and Cross-Pollination of Work • Excellent Participation and Excitement • Set Stage for Participation in Larger Foundation-Sponsored Collaborative Working on Long-term Care Systems Reform (SCAN Foundation Initiative)

29. What We Didn’t • Differences in Approaches Emerged • Participatory Workgroups Proved Difficult to Sustain • Most Strategies Will Take a Longer-term Effort than the Project Will Last

30. Olmstead Summit Resources • All PowerPoint Presentations and Handouts from the Summit, including the DEMOS Communications Training, May Be Found at Our Website: www.californiansforolmstead.orgunder California Olmstead Summit

31. III. Key Policy Work Hopes and prayers, the general desire to do good without knowing how, seem to us frail reeds on which to lean, though these are the bases on which many programs are begun. -Pressman and Wildavsky, Implementation, 1984

32. Approaches • Articulate a Theoretical Framework • Utilize Policy Analysis • Promote Long-term Care Reform Strategies Derived from Best Practices

33. Policies Imply Theories: Articulate a Theoretical Framework • Social Justice and Consumer-Driven Orientation • The Ecological Systems Model is an Overall Framework (Also described as Person-in-environment, Whole Person, or Bio-Psycho-Social-Spiritual Approach) • Within this, the Strengths Perspective, Wellness Perspective, Family Theory, Culture Theory, Empowerment Theory, Recovery Model and Resilience Model are Useful

34. Steps in Policy Analysis -Eugene Bardach • Define the Problem • Assemble Some Evidence • Describe Potential Options or Interventions (Including the DO NOTHING Alternative) • Select Criteria that Will Define Success (Including Cost-effectiveness)

35. Steps in Policy Analysis -Eugene Bardach, cont’d. • Project the Outcomes of Each Alternative (Including Consideration of Unintended Consequences) • Confront the Trade-offs (Sometimes Called a Cost-Benefit Analysis) • Decide Between Options • Communicate Your Analysis in Simple Terms

36. Describing Potential Options: Focus on Best Practices • Characteristics of Effective State Long-Term Care Systems (Washington, Oregon, Vermont) • Considering Best Practices in a State More Like California – Pennsylvania’s Successful Transition Services • Characteristics of Effective County Long-Term Care Systems (San Francisco)

37. Effective State Long-term Care Systems • Washington State began by defining a strong statement of Vision and Values that guided the development of the long-term care system.

38. Washington State Vision • Consumer choice should drive the long-term care system. • Quality of life is as important as quality of care. • No one service is more important than another – the most important service is the one the consumer wants and needs.

39. Values • Persons with disabilities and their families are entitled to maximum feasible choice and participation in selecting care settings and providers. • Persons with disabilities have the right to expect “quality of life,” personal dignity, maximum feasible independence, health and security.

40. Values, cont’d. • People with disabilities have a right to choose and direct a care plan involving “managed risk,” in exchange for the advantages of personal freedom. • The array of public service options and individual consumer choices may be bounded by reasonable considerations of cost-effectiveness.

41. Nine Critical Elements of the Washington State Long-Term Care System • A strong statement of mission and values to guide system development • A single organizational unit in state government to plan, develop and operate the long-term care system • Single budget with flexibility and authority to spend on a varied array of long-term care services • Process for assuring quality oversight throughout the system

42. Nine Critical Elements of the Washington State Long-Term Care System, cont’d. • Strong and organized stakeholders and advocates • A process for resource development that meets consumer demand • Fast, timely and standardized financial and functional eligibility that generates reliable data • Care coordination system with capacity to provide assistance and oversight for consumers • Fair rate setting and contracting process for providers

43. Recognizing Pillars To Build Upon • A Comparison of Core Elements in 3 States with Effective Long-term Care Systems: • Washington • Oregon • Vermont

44. Comparison of Core Elements

45. Effective Practices from States that are More Like California • Pennsylvania is a leading state in transitioning people from nursing homes. • It is more like California in that it has a strong county-based system.

46. Targeted initiatives Pennsylvania’s MFP Transition Program • In 3 ½ years, PA transitioned 1,600 persons from nursing homes. Scaled to CA, that would be 4,600 persons per year. • They estimate their savings to exceed over $200 million in nursing home expenditures. • Roughly 1/3 of all transitions do not require state funded services following transition.

47. How? • Funding: They started with a Money Follows the Person Grant, and added General Fund dollars. In 2008 they invested $10 million, in 2009 $14 million. • They use the general fund dollars to provide the most flexible program aspects. They also have a line item in each state waiver to support transition.

48. How? cont’d. • Reimbursement Structure: They have 80 transition providers and pay them both for time spent w/consumers as well as for benchmarks (30,90,180, 270 and 365 days living in the community). • Housing: Intense collaboration at Cabinet level between LTC and state Housing Finance Agency. Regional housing staff co-located in transition agencies. Preferences for people transitioning, rental assistance, and renter’s training programs.

49. Characteristics of Effective County Long-Term Care Systems Utilized in San Francisco, Informing in Sonoma and San Diego • Consumer-driven • Single Point of Entry (allows quality assurance) • Comprehensive Package of Services that are Tailored to the Individual and Can Change with His or Her Needs • Seamless Transitions Between Care Settings

50. Characteristics of Effective County Long-Term Care Systems, cont’d. • Package Designed on Assessment, with Consumer Choice • Funding for Services • Array of Services • Clear Lines of Responsibility and Oversight • Flexibility to Make Changes