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 Disabilities Education, 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.
MISSION The 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 Manipulated Tricked Unfairly Influenced
Controlled
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!
PURPOSE: Connecting the need for access to and a valued role in the community to the supports needed to achieve this, based on the person’s gifts and capacities, preferences, and hopes and dreams for the future.
INSTRUCTOR NOTES: All people want similar things in their lives and DD services and supports alone don’t help people get the lives they want. A variety of resources, people, and supports are needed for people to achieve the lives they want.
Supports should be tailored to meet the person’s needs and consideration should be given to:
Gifts and capacities- what are the person’s strengths and how do you find out about them?
Interests- what does the person like to do and what are some things they would want to pursue? Think about participating in activities in their community, meeting people and making new friends, learning to use the computer or other technology, finding a job, or working on advocacy skills.
Preferences- Not just about preferring pizza to salad, but really about how the person wants to be supported. Do they prefer to do something independently at first and ask for help if needed, or would they rather have support from the beginning?
Connections and relationships to others- friends, family, and others who know the person well are valuable sources of information and natural (unpaid) support.
Hopes and dreams for the future- what does the person picture themselves doing in the future and what can you offer that will help them achieve this?
Needs for Health, Safety, & Security
Support Coordination plays a crucial part in helping people achieve quality lives. It is important that SCs have conversations about each of these areas of life with everyone they support and then help to connect the person to the support (paid and unpaid) to achieve.
ACCOMPANYING MATERIALS: N/A 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
PURPOSE:
For the participants to under the regulations related to person-centered planning process.
INSTRUCTOR NOTES:
The need to develop plans that are person centered is becoming more and more important. Quite often we’ve claimed that plans were person centered because we asked the person a few questions or they were at the planning meeting. SC must make every effort to collect information that is really about the person. This requires that SC’s have a “toolkit” of questions to ask during conversations that are 1) easy for the person to understand and 2) encourages those that care about the person to share their observations, not simply assumptions.
Greater attention is going into ensuring that plans truly are person-centered. Federal rules are requiring that the planning process truly be driven by the person. This requires that outcomes be personally defined and connected back to the person.
Person-Centered Planning:
Involves the person to the greatest extent possible
Includes those that know and care about the person
Respects cultural, ethnic, and linguistic preferences
Uses conversations and observations
Provides supporters with the the info they need
Identifies possibilities
A person-centered plan is more than documentation – it creates a vision for the person’s life! The plan is not the end– it is a living document that continues to evolve as the person achieves their goals, new information is gained, and interests change.
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
PURPOSE:
To establish that the person is the priority and the primary voice at the center of all planning and service provision and to make the participants aware of the others that may be a part of the person’s planning and support team.
INSTRUCTOR NOTES:
The “team” is the group of people who work in partnership with the person to plan for and find supports to achieve what they want. The person remains at the center of it all, but planning is best when it involves those who know the person well, those who understand how to navigate the system of supports and services (this is you!), and those responsible for providing supports. They can be helpful in providing information related to the individual, including information needed to complete the Person Centered Planning tool. They should be actively involved in planning meetings to infuse perspective on what is needed and will work best for the person.
The team includes:
The person receiving support
Family- Parents, siblings, and others
Guardian(s_- if applicable
Friends
Support Coordinator
Direct Support Professionals, Frontline Supervisors, or another representative from the provider agency who knows the persons well
Other supporters
The roles of each team member are covered in the following slides. 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 Screen readers Picture boards
Interpreters
Pointing
Braille
Drawing pictures
Other Assistive Technology
Sign language
Voice
Listening 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
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
The supports you may need to be
Healthy
Safe
Protected from abuse and neglect
INSTRUCTORS NOTES: One of the key person-centered concepts involves thinking about what is “important to” the person and what is “important for” the person.
Stress that the concept of important to focuses on those areas of life the person him or herself says is important to them. This is communicated through their own words, personal method of communication, or through their behavior (when behavior, reliance on observations is necessary).
Things that are important to the person create life experiences that are meaningful to them. This includes:
Choice
Decisions
Rights
Respect
Relationships
Activities and places to go
Routines and pace of life
Having a valued role
The concept of important for focuses on what is necessary for the health, well-being, and acceptance of the person. The person him/herself may not have a great deal of interest in these things, but they reflect necessary support needs.
Things that are important for the person address the supports that are needed based on:
Health
Safety
Protection from abuse and neglect
Societal norms
In the PCPT, “important to” reflects the things that the person him/herself would say are important either by telling you or through observing their behaviors. Often this will involve asking others about their observations and requires thoughtful questioning and follow-up discussion to get beyond the surface level information. This is useful in helping the person figure out what they want in their life, but it’s difficult if all you know is surface- level information, therefore it is important to adequately capture “the meat” of what is important to the person through inquiry.
For instance:
If someone tells you they like to go to unkin donuts every morning. Ask them why, you may learn about relationships, potential interests in career, or you may just learn that the person likes their coffee, but you don’t know until you ask the deeper questions.
You may also learn that Joe is important to the person, but does that tell you much? No. Discuss further… What does the person like about Joe? What does s/he do with Joe? Having this information is helpful in understanding support needs and preferences as well as identifying characteristics of people that support the person.

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.
INSTRUCTORS NOTES:
When the planning process focuses to heavily on Important For or Important To the services and supports will be selected based on this. This reduces the likelihood the the supports will be of high quality and the person will be less likely to achieve the life he or she wants.
Overemphasis on Important For:
For instance if we focus only on health and safety - the person may receive a service where they are “protected” yet have little opportunity to do what they enjoy and be exposed to new opportunities. They are frequently placed in “programs” that may provide a menu of activities in an isolating environment that often don’t address the preferences of each person.
It necessary to recognize that the inability of the person to have his/her personal preference needs addressed (important to) can often lead to challenging behaviors. Think about our lives – if we don’t get what we want we can get frustrated or even angry, we shut down, yell, or become passive aggressive. The same is true for people with IDD, however sometimes they aren’t able to communicate this in ways supporters see as acceptable – so challenging behaviors take place. If we take time to get to know the person and address their needs and preferences – we can reduce the likelihood that this will happen. In addition, for people that do exhibit challenging behaviors having information about both what is important to/for a person can help Behaviorists, DSPs, etc.. Identify behavior support strategies that will work best for the person.
When working with those that care about the person to plan, it may be necessary to consider “dignity of risk.” Often some element of branching out (risk) is need for the person to accomplish what s/he wants in life.
Overemphasis on Important To:
SC must also avoid focusing purely on Important To. No person’s life can be only focus on their preferences – health and safety and things the person needs to be included and valued by his/her community must be considered. For instance, although people have the right to access food when and where they want – if a person needs support to make healthy choices may need prompts to do this it should be documented in the plan. If the person has diabetes and needs to follow a particular diet, it should be documented. If a person needs specific support when they are over stimulated (too much noise, large crowds, etc…) it should be documented.
The SCs ability to capture both what is important to and important for throughout the plan will help to design services and supports that meet the person’s needs. Will make family members feel more at ease that health and safety will be addressed. And increase the chance that opportunities will be explored and expectations will be raised because the person’s voice (important to) is heard.
SEGUE TO NEXT SECTION:
In the next section, we’ll learn about a few different methods to have conversations about “important to.” 32

33. If most of your plan is just what is important TO you, you may not be as safe as you want.
PURPOSE:
For the participants to understand what imbalance looks like and results in.
INSTRUCTORS NOTES:
When the planning process focuses to heavily on Important For or Important To the services and supports will be selected based on this. This reduces the likelihood the the supports will be of high quality and the person will be less likely to achieve the life he or she wants.
Overemphasis on Important For:
For instance if we focus only on health and safety - the person may receive a service where they are “protected” yet have little opportunity to do what they enjoy and be exposed to new opportunities. They are frequently placed in “programs” that may provide a menu of activities in an isolating environment that often don’t address the preferences of each person.
It necessary to recognize that the inability of the person to have his/her personal preference needs addressed (important to) can often lead to challenging behaviors. Think about our lives – if we don’t get what we want we can get frustrated or even angry, we shut down, yell, or become passive aggressive. The same is true for people with IDD, however sometimes they aren’t able to communicate this in ways supporters see as acceptable – so challenging behaviors take place. If we take time to get to know the person and address their needs and preferences – we can reduce the likelihood that this will happen. In addition, for people that do exhibit challenging behaviors having information about both what is important to/for a person can help Behaviorists, DSPs, etc.. Identify behavior support strategies that will work best for the person.
When working with those that care about the person to plan, it may be necessary to consider “dignity of risk.” Often some element of branching out (risk) is need for the person to accomplish what s/he wants in life.
Overemphasis on Important To:
SC must also avoid focusing purely on Important To. No person’s life can be only focus on their preferences – health and safety and things the person needs to be included and valued by his/her community must be considered. For instance, although people have the right to access food when and where they want – if a person needs support to make healthy choices may need prompts to do this it should be documented in the plan. If the person has diabetes and needs to follow a particular diet, it should be documented. If a person needs specific support when they are over stimulated (too much noise, large crowds, etc…) it should be documented.
The SCs ability to capture both what is important to and important for throughout the plan will help to design services and supports that meet the person’s needs. Will make family members feel more at ease that health and safety will be addressed. And increase the chance that opportunities will be explored and expectations will be raised because the person’s voice (important to) is heard.
SEGUE TO NEXT SECTION:
In the next section, we’ll learn about a few different methods to have conversations about “important to.” 33

34. One way to find out what IS and ISN’T important: Good Day/Bad Day
(presenters share example, then do activity)
INSTRUCTOR NOTES: ”Good Day/Bad Day” is an exercise Support Coordinators can use to help learn more about what is important to a person. This involves asking the person to think think about, write down, or share all of the great things that could possibly happen in a given day from morning to night. Write them out in order as the perfect day. Follow by asking the person to complete the same process to capture the worst day possible.
Simply asking “what does a good day look like for you?” can provide information about:
Routine
Likes and dislikes
Favorite places, people, and activities
By asking, “what does a bad day look like for you?”, you can learn about places, people, and activities to avoid.
This information is important not only for planning, but in working with the person to find support that maximize the opportunities that make good days more likely and minimize the factors that lead to bad days.
The instructor should give a brief example of a portion of their good day and bad day, and ask participants to share what they learned is important to the instructor based on the example.
Let the participants know that when they are working with the person, s/he may not be readily able to describe those things that happen on a good day or bad day. The SC may need to ask them to describe what they do and/or ask those that care about them to describe their observations. Having these deep conversations will help the SC to identify what is truly important to the person.
NEXT SLIDE: Good Day/Bad Day video and activity 34

35. Hopes & Dreams
INSTRUCTOR NOTES: We all have dreams and aspirations. Some we may achieve, some we may not. People with disabilities are no different. Their hopes, dreams, and vision for their future gives insight into what they want out of their lives and gives supporters more of what they need to know to help
Having conversations about hopes and dreams is necessary to helping to identify what the person wants out of his/her life. There are many areas of life that a person may want to see a change, grow, or achieve something including those listed on the slide.
Some questions you might ask to help the person discover their hopes and dreams include:
What kinds of relationships do you want in your life?
Where do you dream of living?
What new things would you like to learn?
Is there anywhere you’d like to travel?
What is your dream job?
Are there groups or activities you’d like to join?
Participants should be made aware that the plan can be flipped through as they’re working. They shouldn’t feel like they need to go section by section. As SCs have these conversations they’ll learn a lot about the person in addition to their hopes and dreams. SCs will very likely learn more about what is important to them and may learn more about what people like and admire about them. As SCs get accustomed to the PCP process, they should grow to feel comfortable flipping back and forth through the sections of the plan as they learn more.
The plan shouldn’t be used in a way where you complete one section, move to the next, complete the next section and move to the next and so on… It was designed to be used in a way where you go back and forth through the sections as you learn more.
Partner Activity:
Instruct the class to get back in their pairs.
Have them discuss their hopes and dreams and while they do this they should 1) write it down in the corresponding hopes/dreams section, and 2) identify what additional things maybe important to the person based on this conversation and write it in that section, 3) identify if there are additional things that people like and admire about the person based on this conversation and write that in the corresponding section (strengths and qualities).
Debrief – ask volunteers to describe what they’ve learned about their partner. As an instructor, if you hear pieces that may fit in other sections or lead to further conversations point these out. Also, as hopes and dreams are shared, consider asking participants if they would consider it a short-term goal or a long-term dream. 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
Disability Rights PA
Adult Protective Services 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 University 1755 N 13th Street Student Center, Room 411S Philadelphia, PA Tel: Fax: Web: Temple IOD staff contact information: Jamie Ray-Leonetti, Policy Director Tel: (215) 43