An Everyday Life for All: An Overview of the LifeCourse Framework Presented by: PA Family Network Throughout our lives, we face questions and search for answers that will help us on our journey to a full and meaningful life. This is true for everyone, especially when you or someone you care about experiences a disability or special health care need. The LifeCourse Framework is designed by families for families, and also designed for all those who touch families’ lives across the lifespan. The LifeCourse Tools are extremely useful, flexible, simple and designed to help all of us have conversations about reaching our dreams. LifeCourse is intended to assist in creating a vision for the future. It is designed to help us think about the questions to ask as well as the choices, options and life experiences to consider as we “plot a course” to a full and meaningful life. It is intended to be a starting point no matter where someone is in the life journey. We hope this helps you realize that even when your loved one is very young, and wherever you are on the journey as he or she ages and grows into adulthood, their life experiences and environment can shape how they will live an everyday life in the future. Ultimately, the foundational beliefs of the LifeCourse Framework uphold a vision of all people with disabilities having fulfilling, self-determined and everyday lives.

Welcome!! What is your name? Where do you live? What do you hope to gain today? Share something you admire most about your family member or friend. Activity: Introductions Time: 10 minutes First trainer starts, go around the room, and second trainer ends, and then begins the next slide of the presentation from there. If it’s a small group, ask everyone to BRIEFLY introduce themselves. If LARGE group, have them do this at their tables. You want to keep it moving and not take too much time! Take notice of the kinds of things people say about their family members. You may have opportunities to refer back to their comments later on if it fits as an example. 2

We are all family members 20 Family Advisors located throughout Pennsylvania Advisors bring their personal experiences and knowledge to share with other families Work in collaboration with stakeholders for positive change Supported by the Office of Developmental Programs The materials and information presented by the PA Family Network is developed in guidance and partnership with the Office of Developmental Programs The Family advisors are all family members of people with disabilities Our main role is to share information and provide support to other family members throughout PA We have a broad range of backgrounds and experiences. (NOTE: Avoid the word training!!!) 3

What we do: Workshops for families across the state Individual and small group mentoring Help families connect and support each other Help families find resources and supports in their community The PA Family Network’s charge is simple --- (3 bullets) So, what’s up with the three buckets? Three strategies have been identified by families regarding the types of supports they need throughout the lifestages of their family members: 1st bucket: DISCOVERY & NAVIGATION – Learning where to find the information and tools you need at every lifestage. Information and Learning Information on disability Knowledge about best practices and values Encourage and empower to create a vision of a good life Skills to navigate and develop and access supports in the community Ability to advocate for services and policy change 2nd bucket: CONNECTING & NETWORKING -- making connections with peers and resources to help you navigate, to not feel alone, and to find your strength, confidence and resiliency. Emotional Support of Peers Family-to-family support Self-advocacy organizations Family organizations Sibling groups Disability support groups Professional Counseling Non-disability community support Neighbors, friends, family 3rd bucket: GOODS, SUPPORTS & SERVICES -- the tangible items you buy and use and the public and private organizations in your community that you access for support -- not all of which are eligibility-based. Supports Coordination Habilitation Services Personal Care Employment Services Supports Brokers Behavioral Supports Therapies Benefits Counseling Assistive Technologies Home Modifications Cash Subsidies Long-term Planning Respite Healthcare Early Intervention Education Community-based resources and supports Families need all three buckets! We must listen to what they need – I need information. I feel alone. I need help with day-to-day support. Support Inform Connect 4

The National Community of Practice: Supporting Families throughout the Lifespan Launched in 2012 in 6 states (MO, CT, WA, TN, OK, D.C.) Created and continue to expand the LifeCourse Framework and Tools Now in 4th year, and 11 new states joined as of July 2016 Each state representing a partnership of DD agency and DD council Each state sharing the same values, vision, and tools Each state strategizing in ways that are unique to that state All states sharing and learning from one another This is all part of a much bigger picture. What is this Community of Practice? (bullet points on slide) 5

Pennsylvania’s approach to the Community of Practice: Develop the the PA Family Network Encourage the launch of “Regional Collaboratives” across PA Support Self-Advocates United as One to build local groups Continue to uphold and teach concepts of Person-Centered Thinking Involve the PA Sibling Support Network and Ambassadors Renew waivers to reflect supporting families and everyday lives Continually learn and share learning with all who touch families’ lives Pennsylvania’s plan involves multiple simultaneous strategies. 6

What will we talk about today? The importance of having a strong vision LifeCourse Framework Foundations What are the LifeCourse Tools How you can use this in your everyday life. This is what we’ll be covering today. You recall that the first slide had the title of “An Everyday Life for All: An Overview of the LifeCourse Framework” This is an overview --- The LifeCourse Framework and tools are very exciting, very positive, and easy to learn and use. As people discover and begin to use them, they realize that they start to change the way we think about our lives and envision possibilities. As you will see today, the tools can be used very specifically as we venture into new ways of thinking and anticipating meaningful lives throughout all lifestages. So, there will be several levels of learning how to go deeper into LifeCourse and use the tools in new ways to plan, problem-solve, strategize, and dream. Again, this is an overview, a “101” if you will. We truly hope you will find it as exciting as we have and that you will begin using the tools and join us again at future workshops to go deeper into the possibilities they reveal. At the end of the presentation, I will share some websites where you can learn more at your pace, access all of the downloadable tools, and see many examples of how families and self-advocates have found the tools and concepts to be life-changing. 7

Why is it so important to have a vision Why is it so important to have a vision? Having a vision sets the dream, the positive expectation for the future. Without a vision, there is no expectation of what the future might look like. And if we don’t have a vision of our own, someone else may determine it – and we might not really like what they choose! So, why is it so important to have a vision? Imagine your own life as a young adult leaving high school, starting a job, or going to college. Do you remember what your vision was for your own life at that stage? Perhaps your vision for yourself changed throughout life based upon your experiences as you grew and learned more about your choices, likes and dislikes. A vision is having a destination. Without a destination, we wander or don’t move forward at all. As family members, having and sharing our vision for our loved one has enormous power. And when our loved one reaches the ability to define his or her vision, as family members, we shift to sharing that vision with them and supporting them in moving toward it. 8

Research shows…. “The most powerful force in changing transition outcomes for young people with significant disabilities is not ultimately found in the transition plans we craft, the educational services we offer, the instruction we provide, or the systems we build, but rather in the expectations and aspirations individual parents hold for their sons and daughters.” - Erik Carter “What Matters Most: Research on Elevating Parent Expectations” Erik Carter is a Professor at Vanderbilt University. His research and teaching focuses on evidence-based strategies for supporting access to the general curriculum and promoting valued roles in school, work and community settings for children and adults with intellectual disability, autism, and multiple disabilities. 9

What do we know? Expectations are formed early and over time. Expectations shape experiences. Experiences also shape expectations. Expectations are influenced by opportunities and supports. (This is a good slide to inject a personal story. An experience that changed an expectation, or an expectation that someone else gave us that was positive and uplifting.) Again, part of the report from Erik Carter’s research Experiences and their impact - be they good or not so good are important to think about before we begin to think about outcomes.  Without first thinking of the experiences that will help lead to outcomes - such as learning experiences, making mistakes, experiencing new things, success changing direction etc., we can expect mediocre outcomes or outcomes that don't support the hopes and desires of our sons, daughters or other family member. 10

What is the LifeCourse Framework? The LifeCourse Framework graphic appears at first overwhelming, with all its colors, layers and terms! But rest assured, I promise that by the end of this workshop, you will be able to look at this graphic and know what everything stands for. In fact, I think you’ll find it to be a reminder or checklist that helps in keeping the concepts in mind. LifeCourse brings us back to center on our passion of people having meaningful lives, and also reframes the way we think about all people. The Framework was created: BY FAMILIES to help families and people of all abilities and all ages to develop a vision for a good life, to think about what they need to know and do, to identify how to find or develop supports, and to discover what it takes to live the lives they want to live. to focus on their current situation and stage of life and also to look ahead to think about life experiences that will help move them toward an inclusive, self-determined, and quality life in the future. (Start animation, slide by slide) Of course, the framework places the individual at the heart of the circle Surrounded by and in the context of family, and those who are like family It points out that we all live our lives each day in a variety of life domains – where we work or how we spend our days, where we live, how we stay healthy and safe, how we make and keep friends, and experience our spirituality, and our involvement as citizens and advocate for what we believe in. This layer reminds us that supporting families needs to consider the three buckets: information, connecting, and supports. And finally, this outer band is about how we integrate supports and services, strategize, plan, and access a wide variety of resources. 11

All people and their families have the right to live, love, work, play Core Belief: All people and their families have the right to live, love, work, play and pursue their life aspirations in their community. This is the core belief of the LifeCourse Framework: “All people and their families have the right to live, love, work, play and pursue their life aspiration in their community.” This slide emphasizes the point that we’re all citizens. This is our hope for ALL people. You notice that the word disability is not in this!!

All of us exist within the context of family Family is defined by the individual Individuals and their family may need supports that adjust as roles and needs of all members change Not dependent upon where the person lives This makes sense to all of us when we are talking about children. But we often stop talking about family when the person we support is an adult. And “family” may look very different – not just our blood relatives, but the people one chooses to consider like family. People exist and have reciprocal roles within a family system, which adjust as the individual family members change and age; individuals and families need supports that address all facets of life and adjust as roles and needs of all family members change as they age through the life stages. 13

Reciprocal Roles Between all Family Members Caring About Affection & Self-Esteem Repository of knowledge Lifetime commitment Caring For Provider of day-to-day care Material/Financial Facilitator of inclusion and membership Advocate for support We tend to focus on the “caring for” role, and forget how important the “caring about” is. Imagine if we ourselves felt only “cared for” in times of need, not also “cared about” every day of our lives? Extended family has a very important role in this area. Members of families play important roles as various times – your cousin may hold your history and care/love you, but not be day to day support. People with disabilities should be encouraged to play these roles for their family members too! We often think about them as needing to be “cared for” but they should be expected to reciprocate, just like other members of the family. *Adapted from Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011) 14

Receive Formal State DD Services 1 in 4 Persons with I/DD Receive Formal State DD Services 75% National % Receiving State DD Services 25% 100% 4.7 Million people with developmental disabilities The LifeCourse Framework is designed for ALL People! Did you know that only about 25% of people with intellectual and developmental disabilities are connected to the Department of Human Services? How are the other 75% of people doing? Do they have a good life with support from family and community? Are they at risk? The LifeCourse Framework can help anyone, anytime, at all stages of life – whether they get formal services or not. All people can create a vision for their future and figure out how to have a Good Life…AND…all of us, as part of the community play a role in assuring people with disabilities are supported. Think universal design, being a good neighbor, closed captioning, automatic doors, welcoming generic community resources…etc. (Remember the flu shot comparison – every person in the broader community plays a role in preventing the flu) ALL individuals and their families, whether they are known to the DD system and/or receive formal services or not, are considered in our vision, values, policies and practices for supporting people with I/DD. FYI: IF ASKED…these numbers include all ages birth to death. ** Based on national definition of developmental disability with a prevalence rate of 1.49% 15

Services and supports are evolving! All of us exist within the context of family and community. Traditionally across our country throughout our past, the disability service model essentially wrapped a layer around the person with a disability that resulted in separating or distancing the person from family and community. Our disability service system is evolving and continues to evolve into a model of integrating services and supports so that people’s lives can be everyday lives with the supports in place where they are needed, and not isolating or segregating people. We will be talking more later when we explore those stars you see on the third circle. Everyone exists within the context of family and community Integrated Services and Supports within context of person, family and community Traditional model of disability services 16

The LifeCourse tools are: Conversation starters Problem solvers Visioning about the future Empowering ownership of a vision Can be used by anyone in any setting Focused on all stages of the lifespan 17

Envisioning an Everyday Life The future is not something we enter. The future is something that we create. And creating that future requires us to make choices and decisions that begin with a dream. --Leonard Sweet Time: 2 minutes It’s important to have a vision for the future – it’s like having a target to aim at. This is called “trajectory” – think about shooting an arrow – the path the arrow follows on its way to the target is the trajectory. Having a vision for a good life and thinking about the trajectory to get there, makes it much more likely you will live the kind of life you really want. 18

Life Stages and Trajectory Toward the Good Life What would that good life look like? What do we know we don’t want to see happen? Aim for a target, a clear picture of what a good life would look like for people. People can focus on a specific life stage, with an awareness of how prior, current and future life stages and experiences impact and influence life trajectory. What happens to us early in our lives has a significant impact on our quality of life and well-being in the future. It is important to help people have positive, healthy experiences, adequate support, and ample opportunities to learn and make mistakes so that they can have better outcomes later in life. Sometimes people can’t see what a good life would look like, but can see what they don’t want. It’s ok to start with identifying what they don’t want. At every life stage, we can easily discern if what is happening is leading toward the vision or not. This tool helps families to adjust experiences so that the day-to-day life does point toward the vision. EXERCISE #1: SMALL GROUP, What is a Good Life? Break audience into smaller workgroups. Give each group a large 11x17 trajectory worksheet, ask for a note taker. What is your vision for your own good life? Think present and future, and focus on your own dreams and your dream for your whole family. Write your group’s answers in the top box of the trajectory worksheet, including everyone’s input. Write “my own vision” across the top of the group trajectory worksheet. REPORT OUT – each group share 2 or 3 things from their list. EXERCISE #2: 3-5 minutes: Next ask the group what are the things they DON’T want in their life. As a group, list their responses in the “what I don’t want” bubble on the table version. Typical answers include poverty, loneliness, job they hate, homeless…. REPORT OUT: 1 or 2 things per group EXERCISE #3: ONLY IF YOU HAVE TIME> On that same big trajectory worksheet, draw a vertical line between the arrows. Divide the group if you want into different ages, like 8, 13, 18, 30, etc. Have the tables list on the sheet the things that typical people of that age would be doing in their day-to-day lives or during that lifestage. Report out from each table. And then, point out that we should be encouraging ALL people to consider those typical experiences and the importance of them as elements of the trajectory. And the opportunities to redirect if the arrow goes the wrong way! 19

Vision by Quality of Life Domains Daily Life and Employment (school/education, employment, volunteering, routines, life skills) Healthy Living (medical, behavioral, nutrition, wellness, affordable care) Community Living (housing, living options, home adaptations and modifications, community access, transportation) Safety and Security (emergencies, well-being, legal rights & issues, guardianship options & alternatives) Time: 5-10 minutes Think about going to a dinner party and meeting new people. These are the ways we share info about ourselves and get to know other people. Now think again about the vision and consider having each domain represented in your vision. We’ve spent time learning the importance of developing an overall vision for a good life, and having life experiences that support the vision. The life domains influence each other, and are very interconnected. People lead whole lives made up of specific, connected and integrated life domains that are important to a good quality of life. Now we are going to spend a few minutes drilling down to a more specific vision in each of the life domains. Just like it is important to have a good overall vision, it’s equally important identify the specific things you want to accomplish. Maybe in your overall vision you said you wanted your family member to have a job, but what kind of job do they want or you think they want or should have? What would be the characteristics of that workplace that would best match the vision? Briefly go over each of the life domains. You can give a couple of examples for each domain if you would like. You can also point out the various domains that were identified in their overall good life vision they did in their small groups. This will help participants see how they have a general idea in several domains, but to really have a specific target to aim at they need to be more specific. The Tool for Developing a Vision can help parents and individuals have conversations about the future. Parents often have specific ideas of what they think their child will be able to accomplish or what they think is best for their son/daughter. But often the son/daughter has their own ideas of what they want in life. The Vision tool is a way to have that discussion, and begin to find a balance between what the family thinks is best FOR the individual and what the person wants – what is important TO them. The Questions and Answers Booklet is very helpful in thinking through all of the life domains across each lifestage. When you get home and work as a family on creating your visions, this tool will be extremely useful. Social and Spirituality (friends, relationships, leisure activities, personal networks, faith community) Citizenship and Advocacy (valued roles, making choices, setting goals, responsibility, leadership, peer support) 20

Integrated Supports Star Skills, talents, likes, interests, abilities, strengths, characteristics family, friends, neighbors, co-workers, community members, church members Public safety, municipal services, school, businesses, faith-based organizations, public transportation, parks and recreation, community centers healthcare benefits, Social Security, drivers license, pension/retirement program, Medicaid/Medicare benefits, other government programs i-pad/smart phone apps, remote monitoring, adaptive equipment, appliances, etc. Using all these types of supports (discussed in previous slide) in combination is what we call Integrated Supports, and it is represented by the Integrated Supports Star. So, how can we plan for everyday lives using all the parts of the star? Time: 10 minutes The purpose of this activity is to engage the group in using the Star in their own everyday lives. Using the Star in this way gives them a better practical understanding of the different categories and the overall concept of using/ integrating many different types of supports to accomplish a goal or solve a problem. Lead the large group through the morning/evening routine exercise, using the STAR you drew earlier in preparation for this module. Leading the large group in this activity, say: Think about your morning routine – in each of the categories of the Star What are some of the supports YOU use to get through your morning routine? (wait for responses and write them in the appropriate part of the Star you drew on the flip chart paper. You might have to help them with some prompts. Ask participants: “Who in the room drinks coffee – raise your hands. How do you get your morning coffee? “ Starbucks or similar coffee shop goes in the “Community Supports”, because anyone can go to Starbucks and get coffee. “Does anyone have a coffee maker? That is “Technology”! “ Maybe they even have a programmable coffee maker that makes the coffee before they wake up! “Does anyone have an alarm clock? Or do you set an alarm on your cell phone?” (both “Technology”). More examples of prompts if your group isn’t “getting it”: « Relationships – after my cell alarm goes off a few times, my husband makes sure I actually am getting out of bed (or if I hit snooze or turn off the alarm and go back to sleep). Maybe you carpool to work with a neighbor or friend. Your spouse MAKES the coffee or your breakfast. « Community – public transit; gas station; bank or ATM; McDonald’s drive thru for breakfast; « Technology - electric toothbrush; remote start car; « Personal Assets & Strengths- early riser/morning person; self-starter; has flexible work hours; has a short commute. « Eligibility Supports – can include supports beyond the disability or special healthcare needs systems. Examples include food stamps, free or reduced price lunches, student financial aid, HUD or Section 8 Housing, Area Agencies on Aging (AAA’s), special education services, Medicaid/Medicare, SSI, SSDI. 21

How could you use the LifeCourse tools? LifeCourse in Action 100% How could you use the LifeCourse tools? Time: 1 minute Say: “Now that you’ve practiced using some of the LifeCourse tools, we are going to discuss some ways you can put them to use in your everyday life.” 22

Ben’s Story Time: 1 minute Ben is a 25 year old young man with disabilities, some of them complex at various times in his life. He was included most of the time in general education classes throughout school and had a para educator support.

Ben’s Life Trajectory Time: 1 minute Ben’s Life Trajectory shows what he and his family envision for his good life and what they don’t want, and it shows his past life experiences that either moved him toward his good life vision or tried to push him the other way. Mention one or two experiences that Ben has that reflect what we know is important to him (from one page profile) like the Firehouse and being treated like everyone else.

Outgoing personality, friendly, Eagle Scout, Ben’s Integrated Services and Supports Star Outgoing personality, friendly, Eagle Scout, can ride city bus Dad, Mom, Matt, Zac, Ali, Chad, Ericka, Sheli, Firemen friends, Ange, Pam, Wally, Josh B., Matt S., Mike, Nick, Scouting friends I-pad, apps, Facebook, Facetime, Digital watch, Vibrating toothbrush, Glasses Ben’s Omni bus, Walmart, 24 Hour Fitness, library, Price Chopper, Dr. T., St. Ann’s church, Fire Dept., joint bank account, direct deposit, Power of attorney Staff support using self-direction, Social Security, Medicaid, Special Needs Trust Time: 2 minutes Ben’s Integrated Services and Supports Star is used in this example as a mapping tool to illustrate the different and varied sources of support he has in all the categories. The first time his family filled out the Star, it helped show that he didn’t have much technology in his life, so they were able to take steps to improve that area of his life. It also helps them when there is a need or an issue to look at ALL different kinds of supports and how they can all work together in Ben’s good life.

Integrating Supports into Real Life Time: 4-5 minutes Pass out the Long Term Services and Supports Template. Show the example of Ben’s “before and after” slides. When Ben aged out of school at 21, his family thought he always needed a one/one support with him because that is what school looked like for him. If you look at the schedule on the left, the only people supporting Ben were a paid staff person for 40 hours a week while Ben’s parents worked, and the rest of the time he was supported by his mom and dad. Not much of a life for a 25 year old! Eventually, the family realized Ben didn’t need a one/one support when he was volunteering at the fire station. In fact, the firemen didn’t want the paid staff there – they said they would help Ben with whatever he needed. Ben also volunteers at the high school he previously attended. Everyone there knows him and he has been involved with supporting the football team for over 10 years, so Ben started going there without paid supports as well. (Community Supports) His family also started calling on some of his other relationship supports (brothers, friends, etc) to do things with Ben such as going to music concerts or live wrestling shows or out to dinner. (Relationship Supports) They also started giving him opportunities to stay home alone for short periods of time (building his own strengths and capabilities) – starting with 5 minutes at a time and building up to as much as an hour now! (Personal Assets and Strengths) 26

Using all parts of the star gets Ben an everyday life! Using the LifeCourse Tools helped Ben and his family and supporters think about his vision, what matters most to him and how to integrate his supports. Now, when we think about Ben’s life, we are not only thinking about Paid Services in Green – but a variety of strategies which in combination lead to a colorful everyday life. The stars are in multiple colors now – they used to be all eligibility based green. 27

LifeCourse Framework The LifeCourse Framework graphic appears at first overwhelming, with all its colors, layers and terms! But rest assured, I promise that by the end of this workshop, you will be able to look at this graphic and know what everything stands for. In fact, I think you’ll find it to be a reminder or checklist that helps in keeping the concepts in mind. LifeCourse brings us back to center on our passion of people having meaningful lives, and also reframes the way we think about all people. The Framework was created: BY FAMILIES to help families and people of all abilities and all ages to develop a vision for a good life, to think about what they need to know and do, to identify how to find or develop supports, and to discover what it takes to live the lives they want to live. to focus on their current situation and stage of life and also to look ahead to think about life experiences that will help move them toward an inclusive, self-determined, and quality life in the future. (Start animation, slide by slide) Of course, the framework places the individual at the heart of the circle Surrounded by and in the context of family, and those who are like family It points out that we all live our lives each day in a variety of life domains – where we work or how we spend our days, where we live, how we stay healthy and safe, how we make and keep friends, and experience our spirituality, and our involvement as citizens and advocate for what we believe in. This layer reminds us that supporting families needs to consider the three buckets: information, connecting, and supports. And finally, this outer band is about how we integrate supports and services, strategize, plan, and access a wide variety of resources. 28

In closing….. Use your vision to influence others to share your high expectations. Blank copies of tools in your portfolio Other supporting documents to help with using the tools www.supportstofamilies.org www.lifecoursetools.com You’ve seen examples of how families have used the tools, and now it is your turn to build your LifeCourse portfolio for and with your family member. We hope this process will help you Champion your vision, show your son or daughter strong, and develop and communicate your high expectations. 29

1 – 844 – PA Family ltesler@visionforequality.org www.visionforequality.org Pass out evaluations and ask if anyone has any additional questions. Thank You! THANK YOU! Inform Support Connect