Have You Heard of the HCBS Final Rule?

1. Have You Heard of the HCBS Final Rule? Temple University Institute on Disabilities Spring 2019 1

2. Introductory Slide Pennsylvania’s University Center for Excellence in Developmental DisabilitiesEducation, Research and Service 2

3. Acknowledgements • This project is supported by a grant from the Pennsylvania Developmental Disabilities Council. • Our project partners are The Center for Public Representation, Disability Rights PA, Pittsburgh Center for Autistic Advocacy, and SAU1. • Thank you to the Boggs Center on Developmental Disabilities for sharing some slides with us. 3

4. Introductory Slide VISION A society where all people are valued and respected, and where all people have the knowledge, opportunity and power to improve their lives and the lives of others. MISSIONThe Institute on Disabilities at Temple University learns from and works with people with disabilities and their families in diverse communities across Pennsylvania to create and share knowledge, change systems, and promote self-determined lives so that disability is recognized as a natural part of the human experience.  4

5. What is the “HCBS Final Rule”? • This is a federal rule from a federal agency called Centers for Medicare & Medicaid (CMS). • It impacts residential and day service settings funded through Medicaid where Home and Community Based Services (HCBS) are provided. • Works to make sure people have choice and control in their lives. 5

6. All HCBS Settings Must… • Help you fully take part in the greater community; • Give you choice, control and independence in your life; • Give you choices about where you live and where you spend your time; 6

7. All HCBS Settings Must… (cont.) • Honor your right to privacy, dignity and respect; • Support you to get a job in the community if you want one; and • Support you to have a choice of services and choice of who provides them. 7

8. RESPECT • Includes no coercion or restraint 8

9. Coercion Means: • Forced • Tricked • Controlled • Manipulated • Unfairly Influenced • Misled 9

10. If the Residential Provider Owns your Home, they Must… • Have a written lease or written agreement for you; • Make sure you can lock your bedroom door; • Give you a way that works for you to lock and unlock the door to your home; • Make sure your home is physically accessible to you. 10

11. Residential – Providers must honor your choices to: • Pick your roommate if you have one; • Decorate your home following the rules in your lease; • Do what you want to do each day, and when and where you want to do it; and • Have visitors whenever you want. 11

12. There Can Be Exceptions • You might need to wait to cook food on the stove until staff is there to assist you. This is for your safety. • You might need to ask visitors to leave before 11 p.m., if your roommate goes to bed at 11 p.m. This is to respect your roommate. 12

13. More Exceptions • You might need to eat certain foods every day when you take medicine, even if you don’t like the food or medicine. This is for your health and safety. • A provider must try other solutions before exceptions because exceptions might limit your choice. 13

14. HCBS Final Rule • This is a federal rule. That means the nation has to follow it. • Each state has its own plan, called a “Statewide Transition Plan.” • This Transition Plan explains how the state will follow the Final Rule. • The Rule gives time for providers to make changes so they can follow it. 14

15. How Does Pennsylvania Make Sure it Follows the Rule? • Step one: initial approval of the statewide transition plan • Step two: make changes to the plan • Step three: get comments from people like YOU on the plan • Step four: make more changes to the plan, if changes are needed • Step five: Final approval of the plan 15

16. What is Happening in PA Now? • Pennsylvania’s Transition Plan currently has initial approval. That means the feds have said “OK” to the first plan for now, and that PA has to make some parts better. • There will be some time for public comment before PA’s plan gets final approval. • The public comment period is IMPORTANT! 16

17. Why is the Comment Period Important? • The Final Rule is about YOUR LIFE! • It is your RIGHT and RESPONSIBILITY to speak up about what is important to you. • This may be the last chance for public comment before the plan becomes final. • Public comments can help to protect person-centered planning and choice. 17

18. Why is the Final Rule a Good Thing? • You will be supported to live your life in the community, not just spend your time in a place or facility. • You will be the center of the planning for your own life. • You will be able to live your own everyday life, and it’s OK for it to be different than the life of other people. 18

19. What Might be Hard About Following the Final Rule? • Making sure people with disabilities and families know about the Rule • Some providers may not want to change the way they support you and others • It may take time for providers to change the way they support you and others 19

20. We Can Help with That!The “final rule” means that there must be person-centered planning • What does “person centered planning” mean for you? 20

21. YOU are In the Center to Get the Life YOU Want! 21

22. Activity – The Life YOU Want • (handout on the life course) 22

23. Having your team support you to get the life you want is Person-Centered Planning Who should be driving the plan? Who picks the people on the team?

24. Who Might Be on Your Team to Support You to Get the Life You Want? 24

25. Here Are Some People We Thought of Who Might Be on Your Team 25

26. Tell Our Team What You Want In Your Life • What are different ways you might tell your team what you want – and DON’T want – in your life? 26

27. Did You Think Of…? • Body language • Picture boards • Pointing • Drawing pictures • Sign language • Voice • Listening • Screen readers • Interpreters • Braille • Other Assistive Technology 27

28. Your Team Should… Learn about you • What you like and DON’T like • Your strengths • Your interests • Your dreams are • Supports you need • Supports you want • Know how you want to be supported 28

29. Your Person-Centered Plan Must: • Use words and/or pictures that make sense to you; • Have your ideas in a list or in a way that works for you; • Say everything that is really important TO you; and • Talk about what is important FOR you. 29

30. Important To/Important For The supports you may need to be Healthy Safe Protected from abuse and neglect • Communicate in the way that works for me • Have choices • Make own decisions • Rights and responsibilities • Be Respected • Choose my relationships • Activities & places to go • Routines & Schedule • Be a full part of the community you choose

31. We all need a balance. 31

32. If most of your plan is just what is important FOR you, you will not live the life you want. 32

33. If most of your plan is just what is important TO you,you may not be as safe as you want. 33

34. One way to find outwhat IS and ISN’T important:Good Day/Bad Day (presenters share example, then do activity) 34

35. Hopes & Dreams 35

36. What is in your Community? • Where do you go every week? • What are some places you pass by, but don’t necessarily use? • What places do you know about, and want to learn more about? 36

37. Being part of YOUR Community Helps YOU: • Meet new people • Find a job • Learn new things • Dream, plan, and do other things 37

38. Remember these pieces of the final rule • The Rule is about YOU and YOUR everyday life. • The Rule says you get a choice about where you live, and who you live with. • The Rules says you get a choice about where you spend your day, and how you spend your time during the day. • If you think the Rule is not being followed, speak up! Your voice matters. 38

39. What if the Final Rule is not being honored in your life? • Talk to Your Supports coordinator • Talk to Your Provider • Talk to your team about what you want • Review your person centered plan with your team • Call Temple University’s Final Rule Info. 39

40. Who do you call if you still need help? • Office of Developmental Programs Customer Service 1-888-565-9435 • Disability Rights PA 1-800-692-7443 • Adult Protective Services 1-800-490-8505 40

41. Tell us what you learned today! • Remember, keep speaking up so you can live the everyday life you want! 41

42. QUESTIONS??

43. Institute on Disabilities at Temple University1755 N 13th StreetStudent Center, Room 411SPhiladelphia, PA 19122Tel: 215-204-1356 Fax: 215-204-6336Email: HCBS@temple.eduWeb: www.disabilities.temple.eduTemple IOD staff contact information:Jamie Ray-Leonetti, Policy DirectorTel: (215) 204-9543Email: jamie.ray-leonetti@temple.edu 43