1. Integration vs Segregation Implications for Institutionalization and Employment Under the ADA 1 Robin A Jones, Director Great Lakes ADA Center Springfield Conference May 22, 2014

2. Olmstead v. L.C. U.S. Supreme Court, No. 98-536 527 U.S. 581 (1999) O “[We] confront the question whether the proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions.” O “The answer … is a qualified yes.” 2

3. The “Integration Mandate” of the Americans with Disabilities Act 28 C.F.R. Section 35.130(d) O “A public entity shall administer services, programs and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 3

4. “Reasonable Modifications” 28 C.F.R. Section 35.130(b)(7) O “A public entity shall make reasonable modifications in policies, practices and procedures … O unless … making the modifications would fundamentally alter the service, program or activity.” 4

5. The Supreme Court: Why is institutionalization discriminatory? O “First, institutional placement of persons who can handle or benefit from community settings … perpetuates unwarranted assumptions … that persons so isolated are incapable or unworthy of participating in community life.” 5

6. The Supreme Court: Why is institutionalization discriminatory? (2) “Second, confinement in an institution severely diminishes the everyday life activities of individuals, including: O Family relations, O Social contacts, O Work options, O Economic independence, O Educational advancement, and O Cultural enrichment.” 6

7. Federal Response O HHS issued Letter in 2000 to State Governor’s: “We encourage you to develop and implement such plans, and to involve individuals with disabilities and other stakeholders in the process of design and implementation” “…Supreme Court's guidance to states regarding how they might come into compliance with the ADA by developing comprehensive, effectively working plans.” 7

8. Federal Response O HHS issued letter in 2000 to State Medicaid Directors: “the Olmstead decision applies to all states programs, but acknowledges that Medicaid is the primary funding source for both institutional and community-based services for persons with disabilities, and therefore the implementation of Olmstead will have its most significant impact on state Medicaid programs.” 8

9. Federal Response O Subsequent letters sent to Medicaid Directors with further policy guidance re: Olmstead, funding, application of waivers, etc. O Numerous initiatives funded to support community living and development of options at the state level O http://aspe.hhs.gov/daltcp/reports/2001/o lmstead.htm#section2 http://aspe.hhs.gov/daltcp/reports/2001/o lmstead.htm#section2 9

10. Recent Developments O Progress toward implementation of Olmstead: O Tom Harkin NPR Interview Tom Harkin NPR Interview O Report: “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” O HELP Committee 2013 (Senate Health, Education, Labor, and Pensions Committee) 10

11. 8 Olmstead is a top priority for DOJ’s Civil Rights Division O “Year of Community Living” O " The Olmstead ruling... articulat[ed] one of the most fundamental rights of Americans with disabilities: Having the choice to live independently. [T]his initiative reaffirms my Administration’s commitment to vigorous enforcement of civil rights for Americans with disabilities and to ensuring the fullest inclusion of all people in the life of our nation.” President Obama June 22, 2009

12. 8 U.S. v. Virginia Settlement Agrmt. O Reforms of entire ID/DD system; relief for more than 5000 people O HCBS waivers for people transitioning out of state-operated ICFs, youth transitioning from nursing homes and large ICFs, and people with “urgent needs” on the waitlist (4200 waivers) O Family support program created for people on waitlists (1000 people) O Full range of community-based crisis services (crisis hotline, mobile crisis teams, crisis stabilization programs) O Expanded case management O Develop and implement Employment First policy and expansion of supported employment and integrated day opportunities O Integrated housing (including subsidies for independent living) O Expansive quality management system for community services

13. 8 U.S. v. New York O Agreement between U.S., New York and proposed class of adults with mental illness in large NYC adult homes O Resolves litigation brought by New York P&A in 2003 alleging that State violates the ADA and Olmstead by relying on institutional adult homes to provide services to persons with MI O U.S. intervened following trial O Agreement must be approved by Court

14. 8 U.S. v. New York (2) O Agreement provides relief to the roughly 4000 individuals with mental illness in 23 large adult homes in NYC O NY will provide supported housing to all eligible individuals with SMI in adult homes. At least 2000 and potentially more than 4000 individuals will transition to supported housing

15. 8 Other Agreements in Implementation O US v. GA – community svs. for 1,000+ people in state DD facilities and on waitlist and 9,000+ people in or at risk of entering state psych hosp. O DD relief includes waivers, family supports, crisis services, and case management O US v. DE – community svs. for 3,000+ people in or at risk of entering state psych hospital and private facilities O ACT, crisis services, supported housing, supported employment

16. 8 Ongoing Litigation Addressing Segregated Service Settings

17. 8 U.S. v. Florida O Complaint filed in July 2013 O U.S. alleges Florida violates the ADA and Olmstead by relying on nursing homes to provide services to children with significant medical needs

18. 8 U.S. v. New Hampshire O Case addresses people with MI in or at risk of entering state psych hospital and state-run nursing facility for people with MI

19. 8 Statements of Interest O DOJ has filed more than 35 statements, including in Illinois of interest in Olmstead case since 2009 O Statements put forth DOJ’s position on various Olmstead issues, including policies putting persons at risk of unnecessary institutionalization O Statements filed in support of both plaintiffs and states

20. 8 Segregated Days O ADA and Olmstead not limited to where people live; also applies to how people spend their days: O Lane v. Kitzhaber (Oregon): O Court found that ADA and Olmstead applies to all government services, programs and activities, including employment. Rejected argument that only applies to residential services and programs.

21. 8 Segregated Days (2) O US v. Oregon (Lane v. Kitzhaber) O Ongoing litigation O US v. Rhode Island and Providence O Settlement Agreement O US v. North Carolina O Settlement Agreement O US v. Delaware O Settlement Agreement O US v. Georgia O Settlement Agreement O US v. Virginia O Settlement Agreement

22. 8 Lane v. Kitzhaber O Complaint and Motion to Intervene– alleges Oregon administers the State’s employment, rehabilitation, vocational, and education service system such that people with disabilities are denied the benefits of the State’s vocational and employment services, programs, or activities in the most integrated setting. O Includes “at risk” class: alleges Oregon fails to ensure that students with I/DD are provided with meaningful choices and preparation for work in integrated settings.

23. 8 Segregated Days (3) O Lane v. Kitzhaber/U.S. v. Oregon (cont’d): O Factual allegations in the complaint: O Over 52% of participants earn less than $3.00 per hour. Some earn only a few cents per hour. O Individuals with ID/DD remain in sheltered workshops an average of 11-12 years. Some remain for as long as 30 years. O 61% received services in segregated sheltered workshops, while only 16% received any services in individual supported employment.

24. 8 Segregated Days (4) O U.S. v. Rhode Island/City of Providence: O Found the state of Rhode Island and the City of Providence violated the ADA by overly relying on sheltered workshops to the exclusion of more integrated alternatives. O Vast majority of people in sheltered workshops could and want to be served in more integrated settings, like supported employment and integrated day settings. O Students with ID/DD at risk of unnecessary segregation in sheltered workshops. In-school sheltered workshop served as pipeline to adult workshop; lack of transition services to prepare students for more integrated options (e.g., internships, part-time jobs, and work-based learning)

25. 8 Segregated Days (5) O U.S. v. Rhode Island/City of Providence: Interim Settlement Agreement O Provides relief to: (1) Individuals currently at state’s largest sheltered workshop provider (TTP) or who have received services at TTP in the last year; (2) youth preparing to leave in-school sheltered workshop program (Birch) or who left Birch within the last two years; and (3) youth participating in the Birch program.

26. 8 Segregated Days (6) O U.S. v. Rhode Island/City of Providence: Interim Settlement Agreement Under the Interim Agreement, over the next year, the State and City will work together to: Provide career development plans, vocational assessments, and benefits counseling for all individuals at TTP and all youth leaving, or who recently left, Birch. Provide supported employment services and placements to all individuals at TTP and youth leaving, or who recently left, Birch; Provide access to integrated transition services to Birch students through a youth transition planning process beginning at age 14;

27. 8 Segregated Days (7) O U.S. v. Rhode Island/City of Providence: Interim Settlement Agreement (cont’d) Adopt appropriate Employment First Policies (the State adopted an Employment First Policy in March 2013 but, under the Interim Agreement, the City of Providence will also adopt one); Increase supported employment and integrated day service provider capacity; Implement quality improvement programs for supported employment, day activity, and transition services.

28. 8 Guidance and Website O Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. (June 22, 2011) O Website: www.ada.gov/olmsteadwww.ada.gov/olmstead O All settlement agreements, findings letters, briefs, guidance, testimony, speeches, etc.

29. How Is This Playing Out In Illinois? 29

30. Williams v Quinn O Lawsuit filed in 2005 by people with mental illness residing in large private State-funded facilities called Institutions for Mental Diseases (“IMDs”). O Class action case on behalf of all of the 4,300 IMD residents across Illinois. O Consent Decree reached in 2010 30

31. What is required? O Interested IMD residents are to be informed of community-based options, receive individualized, independent evaluations, and be given the opportunity to live in the community (including permanent supportive housing) with appropriate services. O Over 5 yr period – those that desire placement in the community will be transitioned into the most integrated community-based setting appropriate for their individual needs. O The State is required to provide appropriate community-based services and housing for people transitioning out of the IMDs, consistent with residents’ personal vision, preferences, strengths and needs. O The State is now eligible to receive federal Medicaid reimbursements for medications and health care when an individual is receiving these services in a community-based setting. O Independent Monitor appointed to oversee implementation and compliance with the Consent Decree. 31

32. Status O Approximately 900 people have moved from IMDs and are receiving community services (as of May 1, 2014) O Coordinated Employment Services are being delivered via the IPS Supported Employment Model (Individual Placement and Support) with more than 80% of individuals retaining employment. 32

33. Ligas vs Hamos O Lawsuit filed in 2005 by nine people with developmental disabilities who resided in large private State-funded facilities (ICF-DDs) or who are likely to be placed in an ICF-DD facility. O Court battle regarding the class and whether or not it included people who had not indicated a desire to live outside of an institution O Agreement reached in 2010 to cover individuals who had currently expressed a desire to live in the community and additional 3000 individuals already living in the community without services/supports. 33

34. What is required? O ICF-DDs residents who desire community placement are eligible to receive an individualized, independent evaluation and the opportunity to live in the community with appropriate services. O Over a 6 yr period, any of the approximately 6,000 ICF-DD residents who desire placement in the community will be supported to transition to the most integrated community-based setting appropriate for their individual needs. O All ICF-DD residents who are happy with their current placement are not part of the class and are not be required to move. O The Consent Decree ensures that resources necessary to meet the needs of those who choose to continue to reside in ICF-DDs will be made available. O Over a 6 yr period, an additional 3,000 people with developmental disabilities currently living at home without services will be given community services. O An Independent Monitor was appointed to oversee implementation and compliance with the Consent Decree. 34

35. Status O Approximately 2200 people are currently receiving community services (this number includes people moving from ICFDDs and people who were previously living in the family home awaiting services) O Since 2000 Illinois has closed 3 Developmental Centers O 7 Facilities remain open O Murray Developmental Center Closure on “hold” due to court action to stop the closure 35

36. Colbert vs Quinn O Lawsuit filed in federal court in 2007 by people with disabilities who reside in Cook County nursing facilities and who want to live in community based settings and receive community services. O Class action suit representing 16,000 Medicaid-eligible people living in Cook County nursing facilities. O Concent Decree reached in 2011 36

37. What is required? O In the first 30 months, provide housing assistance that will permit more than 1,000 class members currently living in nursing facilities to move into housing in the community who otherwise would not be able to do so. O State to develop a plan to transition other nursing facility residents into less restrictive and less costly community-based settings. O State to develop community-based services and housing for class members moving out of nursing facilities. O Independent Monitor was appointed to oversee implementation and compliance with the Consent Decree. O The Monitor found the State was out of compliance when it failed to provide community placements and services to 300 class members in the first year. O Under a new implementation plan the oversight of this program was moved to Aging in close collaboration with DHD-DRS 37

38. Status O Approximately 250 people have moved from nursing homes and are receiving community services O December 2013 Court Monitor Report strongly criticized the State for lack of progress O Department of Aging is in the process of revamping the program O Increased outreach to Nursing Homes to recruit participants O Developing and supporting peer mentoring programs for potential class members O Increased education to managed care agencies responsible for managing the program 38

39. Information on Illinois Cases O Equip for Equality; O www.equipforequality.org www.equipforequality.org O State of IL Website: O http://www2.illinois.gov/hfs/PublicInvolvement/Colbert%20v%20Quinn/Pages/ default.aspx http://www2.illinois.gov/hfs/PublicInvolvement/Colbert%20v%20Quinn/Pages/ default.aspx O http://www.dhs.state.il.us/page.aspx?item=58321 http://www.dhs.state.il.us/page.aspx?item=58321 O http://www.dhs.state.il.us/page.aspx?item=51834 http://www.dhs.state.il.us/page.aspx?item=51834 39

40. Employment First Illinois Implementation 40

41. What is Employment First? O A concept to facilitate the full inclusion of people with the most significant disabilities in the workplace and community. O Under the Employment First approach, community-based, integrated employment is the first option for employment services for youth and adults with significant disabilities. O 33 States have some form of Employment First Initiatives 41

42. Forward Movement O Illinois Task Force on Employment and Economic Opportunity for Persons with Disabilities O Established by legislation in 2009 O Mandate to review existing policies and procedures regarding employment in Illinois and make recommendations for changes in policies and practices 42

43. Progress???? O Employment First Summit O January 2012 – Springfield IL O Over 90 legislators, Agency Heads, Service Providers, consumers, families attended O ARC and the Task Force supported legislation in the 2012-2013 Legislative Session O Employment First Law passed unanimously O Signed into law on July 16, 2013 O Executive Order Pending O Creating a plan for implementation O Task Force on-going activities O Working with agencies to develop Strategic Plan for implementation O Exploring other areas that impact employment O Housing, transportation, etc. 43

44. Employment First Resources O Office Disability Employment Policy (ODEP) O http://www.dol.gov/odep/topics/Employment First.htm http://www.dol.gov/odep/topics/Employment First.htm O APSE O http://www.apse.org/employment- first/resources/ http://www.apse.org/employment- first/resources/ 44

45. Questions? 45 Robin A Jones, Director Great Lakes ADA Center 800-949-4232 (V/TTY) guiness@uic.edu www.adagreatlakes.org