An Everyday Life for All: An Overview of the LifeCourse Framework Presented by: PA Family Network
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 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 Inform Connect Support 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
Core Belief: All people and their families have the right to live, love, work, play and pursue their life aspirations in their community.
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
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 12
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 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
Life Experiences and Life Transitions Enjoying friends and Volunteering Getting family a home Chores and allowance Finding job Learning to say no Making Mistakes Scouts, 4H, faith groups Playing sports or an instrument Birthday parties with friends My parents have passed away, what do I do? Parents Turn 65 Medicare & SSDI Transition planning Living Adult Life Turning 18. Leaving school at 18 or 21 Getting New Diagnosis Leaving Early Childhood/ enter school Anticipatory Guidance for Life Experiences 18
Your Life Experiences What were you doing at age 28? What We Want What were you doing at age 13? What were you doing at age 8? What We DON T Want 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) Social and Spirituality (friends, relationships, leisure activities, personal networks, faith community) Citizenship and Advocacy (valued roles, making choices, setting goals, responsibility, leadership, peer support) 21
One Page Profile/Description 20
100% We all use a variety of supports in our daily lives. Relationships Technology Community Personal assets and strengths Eligibility-based supports and services 23
Integrated Supports Star i-pad/smart phone apps, remote monitoring, adaptive equipment, appliances, etc. Skills, talents, likes, interests, abilities, strengths, characteristics family, friends, neighbors, coworkers, 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 24
Integrated Supports: Problem-solving 25
100% LifeCourse in Action How could you use the LifeCourse tools? 26
Sophia s Story
Life Trajectory Worksheet VISION for a GOOD LIFE Past Life Experiences LIST past life experiences and events that supported your vision for a good life. Future Life Experiences LIST current/ future life experiences that continue supporting your good life vision. LIST what you want your good life to look like Never gave up, supportive family, Going to games and cheering on my brother with my parents, having a sleep over with Becca "girl's weekend", being daddy's caddy Write current age here chorus, using my IPAD for support, navigating my environment almost independently, my mom fighting for me and always thinking outside the box. Using technology to support my everyday life. Drink and eat independently with utensils. I want to learn what I need to know in order to live as independently as possible. Become stronger so I can stand pivot transfer, I want to leave the house and go out into the community. I want real life friends who are not paid to spend time with me. I want to learn a skill, make my own decisions, manipulate my environment. Be in charge of my staff, my day, my clothing and where I go. I would like to be out in the community more, I want to be safe, I want to be liked. I WANT TO MATTER! LIST past life experiences that pushed the arrow toward things you don t want. 15 LIST life experiences to avoid because they push you toward things you don t want. Being babied, ignored, doubted, underestimated, people doing things for me w/o asking me first, lazy people who did not care about supporting me, just a paycheck Not letting me fail, struggle talking Being in pain, people underestimating me, people not listening to me or talking about me when I am sitting in the room, not being included, using behavior modification when I say no, What I DON T Want LIST the things you don t want in your life Be isolated, I don't want to live in a group home or facility, I don't prevoc lab=glorified sheltered workshop want to be hurt or taken advantage of. I don't want to be bossed around like my opinion does not matter or that I should not express myself. Never underestimate me My LifeCourse Portfolio is a template of the UMKC IHD, UCEDD. More materials at lifecoursetools.com OCTOBER 2016
In closing.. Blank copies of tools in your portfolio Other supporting documents to help with using the tools www.supportstofamilies.org www.lifecoursetools.com 35
Champion your vision! Show your family member strong! Celebrate their gifts, talents, and who they are. Use your vision to influence others to share your high expectations. Invite the community and the people in your life to join you on your journey! 36
1 844 PA Family PAFamilyNetwork@visionforequality.org www.visionforequality.org THANK YOU!