An Everyday Life for All: An Overview of the LifeCourse Framework Presented by: PA Family Network

Welcome!! Meet our Family Advisors – 2

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 3 Inform Connect Support

An initiative of the Office of Developmental Programs, directed by Vision for Equality, and a key part of PA’s involvement in the National Community of Practice We are all family members of people with disabilities 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 4

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 6

What will we talk about today? LifeCourse Framework LifeCourse tools The importance of having a strong vision Strategies for building supports How you can use this in your everyday life. 7

7 Core Belief: All people and their families have the right to live, love, work, play and pursue their life aspirations in their community.

Services and supports are evolving! Everyone exists within the context of family and community Traditional model of disability services Integrated Services and Supports within context of person, family and community 9

What is the LifeCourse Framework? 10

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! 11

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 Envisioning an Everyday Life 14

What is YOUR Vision for a Good Life? My vision of a good life 15

What You Don’t Want?? Vision of What I Don’t Want 16

What is your vision of an everyday life for your family member with a disability? What I DON’T Want What I Want 17

Life Experiences and Life Transitions Getting New Diagnosis Parents Turn 65 Medicare & SSDI Leaving Early Childhood/ enter school Transition planning Living Adult Life My parents have passed away, what do I do? Turning 18. Leaving school at 18 or 21 Chores and allowance Scouts, 4H, faith groups Playing sports or an instrument Making Mistakes Learning to say “no” Birthday parties with friends “Anticipatory Guidance for Life Experiences” Enjoying friends and family Finding job VolunteeringGetting a home 18

Your Life Experiences What were you doing at age 8? What were you doing at age 13? What were you doing at age 28 ? What We Want What We DON’T Want 19

One Page Profile/Description 20

Vision by Quality of Life Domains Daily Life and Employment (school/education, employment, volunteering, routines, life skills ) Community Living (housing, living options, home adaptations and modifications, community access, transportation) Social and Spirituality (friends, relationships, leisure activities, personal networks, faith community) Healthy Living (medical, behavioral, nutrition, wellness, affordable care) Safety and Security (emergencies, well-being, legal rights & issues, guardianship options & alternatives) Citizenship and Advocacy (valued roles, making choices, setting goals, responsibility, leadership, peer support) 21

22 After looking through all 3 lenses…. The one-page profile The vision and trajectory The quality of life domains …we can strategize supports for a good life!

We all use a variety of supports in our daily lives. 100% Relationships Technology Community Personal assets and strengths Eligibility-based supports and services 23

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. 24

100% LifeCourse in Action How could you use the LifeCourse tools? 26

Ben’s Story

Ben’s One-Page Profile

Ben’s Life Trajectory

Ben’s I-pad, apps, Facebook, Facetime, Digital watch, Vibrating toothbrush, Glasses 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 Dad, Mom, Matt, Zac, Ali, Chad, Ericka, Sheli, Firemen friends, Ange, Pam, Wally, Josh B., Matt S., Mike, Nick, Scouting friends Staff support using self-direction, Social Security, Medicaid, Special Needs Trust Outgoing personality, friendly, Eagle Scout, can ride city bus Ben’s Integrated Services and Supports Star

Integrating Supports into Real Life 31

Using all parts of the star gets Ben an everyday life! 32

In closing….. Blank copies of tools in your portfolio Other supporting documents to help with using the tools

Champion your vision! Show your family member “strong”! It is contagious and others will join you in your vision. Celebrate their gifts, talents, and who they are. Use your vision to influence your family, friends, support workers, teachers and others to share your high expectations of achieving an everyday life. Invite the community and the people in your life to join you on your journey! If you don’t represent the high expectation, no one else will! 36

1 – 844 – PA Family THANK YOU!