Policy, Goals and Issues in State I/DD Systems

1. Policy, Goals and Issues in State I/DD Systems ASAN – Autism Leadership Training August 17, 2015 Mary Lee FayNational Association of State Directors of Developmental Disabilities Services

2. agenda • Impact of Advocacy - History • Where do we want to go • Impact of Medicaid and new Rules • Other challenges to supports • Advocacy - Today

3. Know the History The asylum model 1800s

4. The Impact of Public Policy The asylum model 1800s ADA 1990 The Right to Education 1976 1972 in Pennsylvania Cecil George Painea achieved the first recorded cure with penicillin of igonococca infection in infants 1930. Olmstead Decision 1999 Civil Rights if Institutionalized Persons Act 1980 Medicaid Home & Community Services 1981

5. People with Disabilities Make Change • Americans with Disabilities Act • Olmstead Litigation

6. Self-Advocates and Families Must Engage, Lead, & Drive Change

7. Slides by the RISP and FISP Projects at the U of MN's RTC on Community Living

8. Movements Shaping DD Supports 1950s Mom------------Parent-----FamilyMovement 1970sSelf-Advocacy and Independent Living Movements (Not about me, without me) 2000s Siblings Movement 1960s Medicaid and Medicare Established 1980s Medicaid Waiver (Community Supports) 2010s Affordable Care Act 1970s Rehab Act: 504 Plans 1975s Education for All Children 1990s IDEA and ADA 1990 and 2000’sOlmstead Community and Society

9. What we know about current realities for pressures for change? Demand for Services Expectations, Values, Culture Policies and Budget Evidence Based Practices Language and Words

10. Supports should enhance real lives

11. Current Support System

12. Real People, Real Lives with Integrated Supports

13. How do we get there Trajectory toward a good life Trajectory towards things you don’t want

14. What is a trajectory? Friends, family, job, fun things to do, independence, your own place, happiness Trajectory toward a good life Vision of What I Don’t Want Trajectory towards things you don’t want

15. Katie’s Good Life Trajectory VISION FOR GOOD LIFE Help other people with disabilities My own place Get married Get my journalism degree ASAN Leadership Moved in my own place Started college at State Fair Trajectory toward a good life Vision of What I Don’t Want To be labelled To be unhappy Special ed classes Trajectory towards things you don’t want

16. Exercise • What is a good life trajectory

17. We all use Supports

18. person or family resources, abilities, strengths, characteristics i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment person or family resources, abilities, strengths, characteristics SHS services, Special Ed, Medicaid, section 8, Food Stamps, Vocational Rehab (VR) person or family resources, abilities, strengths, characteristics

19. Relationships family, friends, neighbors, co-workers, community members, church members Who do you have in your life to help you? Family Friends Close personal relationships (like your neighbor, boss, pastor coworkers, etc)

20. Personal Strengths & Assets person or family resources, abilities, strengths, characteristics What do you have that will help you? Personality traits Skills or training that you have Belongings that own or things you have access to

21. Technology i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment How can technology help you be more independent? Smartphones Assistive technology Internet and computers

22. Community-Based Businesses, places, and things anyone can access where you live: School Library Park Police station Hospital Church Grocery Store Library, church, Community collage Coffee shops school, businesses, church/faith based, public transportation, parks and recreation

23. Eligibility Specific Things you have to have a diagnosis, certain income, or other qualification (like age, gender, or race) for Food stamps Housing Voucher DD Services Medicaid Medicare SHS services, Special Ed, Medicaid, section 8, Food Stamps, Vocational Rehab (VR)

24. exercise • Pick 2 areas that are not eligibility services that support you to get up in the morning

25. Marilyn’s Integrated Supports Outgoing, helpful, good heart, Partners in Policymaking, Project STIR, Rents her own apartment Nephew Burt, my brother Don, Rachel, Katie, Patty, Phyllis, Gary Smartphone, laptop, Kindle Fire, Facebook MARILYN’S INTEGRATED SUPPORTS Wal-mart, Schmitty’s, YMCA, Southern Heights Christian Church SSDI, Medicaid, Food stamps

26. Eligibility Services MEDICID FUND SERVICES

27. NASDDDSNational Association of State Directors of Developmental Disabilities Service Without Medicaid, There Would Be No Services

28. Medicaid Long Term Supports and Service (LTSS) Spending $140 billion in FFY 2012 – institutional and community • Home and community-based services (HCBS) - 49.5% or almost $75,000,000,000. • 70 % for people with developmental disabilities • 39 % for older people or people with physical disabilities • 35 % for people with serious mental illness or serious emotional disturbance. Steve Eiken:Truven Health Analytics

29. Who Are We Serving? • 36% Co-occurring DD/MI • 11% Autism (4% in WY to 19% in NJ) • 15% Cerebral Palsy • 31% Seizures/neurological conditions • 5% TBI • Behavioral disorders • Communication disorders 2009-10 NCI Consumer Survey

30. 89% of People I/DD are Supported by Family

31. CMS rules for home and community based services An Overview

32. NASDDDS 4/17/14 The "big deal” items….. • HCB Settings Character • What is NOT community • What is likely not community • What is community • Person-centered planning

33. NASDDDS 4/17/14 Before we define HCB Settings character.. • Settings that are NOT Home and Community-based: • Nursing facility • Institution for mental diseases (IMD) • Intermediate care facility for individuals with intellectual disabilities (ICF/IID) • Hospital

34. NASDDDS 4/17/14 Settingsthat we do not think wouldBe Home And Community-based • Settings in a hospital, nursing home or institution • Settings on grounds of, or nextto, a hospital, nursing home or institution (even if it is a house, if it on the campus of an institution it is NOT in the community. Or a separate hallway in a nursing home) • Settings with that keep the people away from the community – they “isolate” the person

35. NASDDDS 4/17/14 But…. • States may ask the Federal Government for permission to use these settings IF they can show that people REALLY are living in the community (they leave and go to work, friends and family come over to see them, they go shopping in town….) • This is called “Heightened Scrutiny”

36. NASDDDS 4/17/14 SO – What does “settings”mean in the Rule • States have to show that where people LIVE and WORK and spend their DAY are in the community • Ensures the individual receives services in the community to the same degree of access as individuals not receiving Medicaid home and community-based services

37. NASDDDS 4/17/14 MORE from the Rules • The person CHOOSES where they live and work and spend the day • The setting options are written down in a person-centered service plan and are based on the individual’s needs and, preferences.

38. NASDDDS 4/17/14 The Rule ALSO Says people… A person has the right of privacy, dignity, respect • They haveindependence in making life choices • Facilitates individual choice regarding services and supports, and who provides them • Be aware this is not just residential…the rule applies to ALL settings including day programs…

39. NASDDDS 4/17/14 There MUST be Person-centered planning • The person-centered planning process is driven by the individual • Includes people chosen by the individual • Provides necessary information and support to the individual to ensure that the individual directs the process to the maximum extent possible • Is timely and occurs at times/locations of convenience to the individual • Reflects cultural considerations/uses plain language • Includes strategies for solving disagreement • Offers choices to the individual regarding services and supports the individual receives and from whom

40. NASDDDS 4/17/14 Person-centered planning sayswhat is important to the person and what is important for the person “What do people know and like about me” • May include what control the person wants to have Hiring staff, deciding about the budget • Opportunities to seek employment and work in the community

41. NASDDDS 4/17/14 Person-centered planning • Written plan reflects – • Setting is chosen by the individual and is integrated in, and supports full access to the greater community • Opportunities to seek employment and work in competitive integrated settings • Opportunity to engage in community life, control personal resources, and receive services in the community to the same degree of access as individuals not receiving Medicaid HCBS

42. Challenges

43. Demographic Climate Change

44. Baby-Boom Generation National Institute on Aging

45. Workers per Social Security Beneficiary Every day 10,000 Baby Boomers qualify for Social Security

46. Shortages of Care Givers as America Ages A labor shortage is worsening in one of the nation's fastest-growing occupations—taking care of the elderly and disabled-just as baby boomers head into old age. Wall Street Journal April 15. 2013 Larson, Edelstein, 2006

47. Pressures on Funding

48. We are Confronted with Reality Growth in public funding will slow Workforce will not keep pace with demand The Waiting List

49. We Can’t afford to Expand Services that require 24 hour care

50. Remember this!