CIL-NET Presents…

1. CIL-NET Presents… Implementing and Enforcing Olmstead A National Onsite Training Illinois Fights for the Right to Live at Home: The CIL Perspective May 12, 2011 Atlanta, Georgia Presenter: Amber Smock, Director of Advocacy Access Living of Metropolitan Chicago 1

2. The Chicago Disability Scene • A varied and political landscape of grassroots advocates, service providers, “professional” advocates, bureaucrats, elected officials, academics, funders and culture makers • Coexists with a powerful and diverse mainstream local community organizing tradition • A strong cabinet-level Mayor’s Office on People with Disabilities • Race and class play significant roles in the disability experience in Chicago, third most segregated city in the United States • Chicago advocates address local, state, national and international disability issues 2

3. About Access Living (AL) • Established in 1980; Marca Bristo has served as President & CEO since its inception • The CIL for metropolitan Chicago • 2.7 million people live within the city limits • More than 600,000 residents have disabilities • AL currently has around 70 staff • Program staff are divided into the independent living, advocacy and legal departments 3

4. The Program Departments Having three areas of programmatic focus allows us to tackle Olmstead implementation with multiple strategies: • Direct service and connections with consumers • Legal enforcement • Policy and budget analysis, dialogue with lawmakers • Systems change community organizing • Movement building around a shared struggle • Media coverage 4

5. Independent Living Services • 21 staff • Community integration out of nursing facilities and institutions • Homeless prevention • Housing counseling and home modifications • Peer disability support groups and counseling, including for Deaf people • Skills development, including financial literacy and pre-employment • Information and referral

6. Advocacy • 13 staff • Community organizing on the issues of housing, youth transition, women/girls, employment, Latinos, and health care • Policy analysis and advocacy in the areas of housing, education, employment, immigration, health care, community integration/Olmstead • Strong community partnerships, for example with ADAPT and the Community For All Coalition

7. Legal • Five staff, four of whom are attorneys • 3 class action cases based on Olmstead • A rotating active caseload of around 40 individual cases involving housing discrimination • Fair housing testing, supported by HUD

8. Access Living and Equip for Equality (EFE) • Since the two agencies’ inception in the 1980s, our interests (and employees!) have overlapped • Several people, especially attorneys, have worked for both Access Living and EFE at different times • Clients are also often referred from one agency to the other, depending on their needs

9. Collaborating with EFE • Our independent living services have enabled us to directly connect with class members affected by the Olmstead lawsuits (outreach) • Our legal staff have taken on the direct work involved in collaborating as full legal partners in the lawsuits • Our advocacy staff have been able to press for the programmatic/funding infrastructure necessary to implement the settlement agreements, while also organizing the community to speak truth to power about institutionalization

10. Illinois Disability Advocacy • Illinois is one of the wealthiest US states, and ranks near the bottom in quality community living for people with disabilities of all ages • Statewide advocacy depends on networks & coalitions---the Statewide Independent Living Council, the Illinois Network of Centers for Independent Living, the Community for All Coalition, Coalition of Citizens with Disabilities in Illinois

11. Illinois Disability Advocacy, cont’d. • In addition to the class action cases, real power comes from being at the decision making table in Springfield & Chicago • Distance, philosophy and money create fracture in disability advocacy

12. Getting Results • The State has acknowledged cost savings in home and community based services • State agency summaries in the Governor’s FY12 budget incorporate policy furthering community integration • Closure of two State Operated Developmental Centers: Lincoln and Howe • Increased understanding of Olmstead implementation among key lawmakers

13. Getting Results, cont’d. • Illinois has both Money Follows the Person and the Community Reintegration Program • Illinois has an Emergency Backup PA Program • The State is highly interested in applying for the Community First Choice Option • Cross-disability and labor coalition work with the Arc, mental health community, and SEIU

14. Department of Aging “Strengthen the [community] provider network.”

15. Department of Human Services “Promote independence through employment support and community integration of people with disabilities and low-income individuals.” “Rebalance Service Options. Implement a framework for a comprehensive person centered service delivery system, rooted in community-based structures, that meets the needs of people with physical, mental and developmental disabilities with increased targets for community based placements.”

16. Department of Health and Family Services “Continue long-term care rebalancing. HFS will continue, in coordination with other human service agencies, rebalancing the long-term care delivery system, with the goal of serving as many people as appropriate in community-based care.”

17. Major State Challenges • Significant state and federal budget crises; threat to Medicaid • Highly polarized state legislature • No major state lawmaker is “the” effective champion of Olmstead implementation • Pitting funding silos against each other for budget cuts (i.e. PAs vs. direct care workers)

18. Major State Challenges, cont’d. • Managed care and Affordable Care Act rollout • Determining the role of unions, particularly AFSCME and SEIU • Dealing with pro-institution groups and reforming the nursing facility industry • Fractured political dynamic between Chicago and the rest of the state

19. What’s Next? • The three class action cases are past their mid-point: what’s the next big set of cases? • Surviving the current economic crisis • Ongoing pressure for state funding for social safety net programs, including CILs

20. What’s Next? cont’d. • Fight for a Federal mandate, not just the CFC Option • Preparing for the Baby Boom bump of older Americans wanting in-home services • Development of grassroots leaders in the community integration struggle

21. For more information Contact: Amber Smock, Director of Advocacy Access Living asmock@accessliving.org (preferred) (312) 640-2191 www.accessliving.org Access Living is also on Facebook

22. CIL-NET Attribution Support for development of this training was provided by the U.S. Department of Education, Rehabilitation Services Administration under grant number H132B070002-10. No official endorsement of the Department of Education should be inferred. Permission is granted for duplication of any portion of this PowerPoint presentation, providing that the following credit is given to the project: Developed as part of the CIL-NET, a project of the IL NET, an ILRU/NCIL/APRIL National Training and Technical Assistance Program.