Dreaming the Possible Together: Strategies for Charting a New Life Course

1. Dreaming the Possible Together:Strategies for Charting a New Life Course Michelle “Sheli” Reynolds, SIBLING, PhD Missouri Family to Family Network UMKC Institute for Human Development University Center on Excellence in Developmental Disabilities February 19, 2014

2. About me… • Sibling of three brothers, one who is 30 year old with developmental disability • Supported the Self-Advocacy Movement for 12 years • Director of Mo Family-to- Family Resource Center • Focus on policy and systems change focusing on LifeCourse and families

3. Funded by National Partners

4. States in the Community of Practice CT MO DC OK WA TN

5. Project Goal • To build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families than include a member with I/DD across the lifespan. • Project Outcome • State and national consensus on a national framework and agenda for improving support for families with members with I/DD. • Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families. • Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.

6. Outcomes for Today • Overview of the Charting the Life Course Framework • Recognizing “all” people with disabilities • Setting a vision for the future • Importance of Life Experiences • Understanding Your Life Trajectory • Expanded understanding of “FAMILY” • Recognizing roles of all family members • Importance of Family Systems and Family Cycles • Ways to support families • Practical strategies for “dreaming the possible together”

7. Focusing on ALL Why does this matter?

8. Who are we talking about? All 4.7 Million people with developmental disabilities

9. Who is usually talked about? 75% 25% National % Receiving State DD Services

10. Oklahomans with Disabilities 60,277 estimated Oklahomans with Developmental Disabilities 15% 12% 73% (44,002) Enrolled State DD Services Waiting for State DD Services Based on 1.58% prevalence of 3.815 million citizens, US Census

11. Who are the 73%? 60,277 estimated Oklahomans with Developmental Disabilities 15% 12% 73% (44,002) • Individuals who: • Unaware of disability specific services • Do not want disability specific services • Have a diagnosis but don’t meet “eligibility criteria” Based on 1.58% prevalence of 3.815 million citizens, US Census

12. Outcomes for ALL What will this look like?

13. People with disabilities and their families have the right to live, love, work, play and pursue their life aspirations just  as others do in their community.

14. Framing & Reframing Making “the right to live, love, work, play and pursue life aspirations” a Reality for All

15. The Golden Circles Simon Sinek http://www.startwithwhy.com/

16. The Golden Circles “Nobody ever comes along because of what you do or how you do it. They come along because of why you do it. And because you believe in why you are doing it. And if they can find a way to believe in the same thing, then they will come along with you. Not for you, but for themselves. Because they believe ittoo.” Simon Sinek http://www.startwithwhy.com/

17. “It’s not what you do or how you do it, its WHY you do it” Remember Martin Luther King Jr. did not give an “I have a plan” speech. He told people he had a dream. He told them what he believed. And they believed too. Not for him but for themselves.” Simon Sinek

18. Framing &Re-framing • Our “I have a Dream….” • Why: Everyone has the right to live, love, work, play and pursue their life aspirations just  as others do in their community. • How: Frame our thinking and actions around aspirations and visions, life expectations, family and life outcomes • What: Reframe what supports are available, who receives them and how they are provided to achieve life outcomes

19. How to make it Reality? Frame our thinking and actions around visions, life expectations, family and life outcomes

20. Think about your life…..

21. INDIVIDUALS live within the context of THEIR FAMILY

22. Individuals Are Part of a Family System

23. Defining FAMILY Family are those people who… Consider themselves a family (whether or not they are related by blood or marriage) and support and care for each other on a regular basis This is not dependent on where they live. • (Turnbull and Turnbull, KU Beach Center)

24. Lifelong Impact of Family on Individual Biologically: Likes, dislikes, skills, abilities Socially: Family and friend network, connection with community members Environmentally: Neighborhood, socio-economic, education Policy: Dreams, Aspirations, House rules, cultural rules, expectations

25. Recognize All Family Member Stages Family System has a Family Cycle

26. Reciprocal Roles of Family

27. Professionals Must Think Differently about Families • “the people I support don’t have any family” • “the families I work with are often a barrier” • “families are too tired and overwhelmed” • “families expectations are too high” • “families expectations are too low”

28. What?? Reframe “supports”….what are they and how they are provided to achieve life outcomes

29. With the best intentions…..

30. Real Lives, Real Supports

31. Reframing Our Thinking People with disabilities and their families… will have opportunities across the life course and the many facets of life to participate as full citizens in the community. Life Course

32. Why Uncharted Waters? • Journey: Recognizing life is not static • Exploring: identifying new options and possibilities • Navigating together: Sharing responsibility • Our overall compass is “quality of life”

33. Charting a New Reality

34. Reframing Our Thinking People with disabilities and their families… have access to resources and supports, that are person and family centered and directed, that enhance individual lives and maintain the family well-being. Life Course

35. Reframing Our Thinking Types of Supports Life Course

36. Types of Supports

37. Supports that Support All Roles

38. Supports for Creating a Vision Vision of What I Want for a Quality of Life Vision of What I Don’t Want

39. Supports to Understand What is Possible • DAILY LIFE: What do I do during the day? • COMMUNITY LIVING: Where do I live? • SOCIAL & SPIRITUAL: How do I stay connected to my friends and my spirituality? • HEALTHY LIVING: How do I stay mentally and physically healthy? • SAFETY AND SECURITY: How do I feel safe? • CITIZENSHIP AND ADVOCACY: Am I able to speak up for myself and others?

40. Supports that focus on Life Experiences “Anticipatory Guidance” Birth-----Early Child----School----Transition---Adulthood-------Aging

41. Supports that Nudge Towards a Good Life Positive Trajectory Birth-----Early Child----School----Transition---Adulthood-------Aging

42. Supports that Build and Integrate Many Different Types of Supports Relationship Based Supports Community Resources Eligibility Specific Supports Technology Supports

43. What does this look like? Looking at My Families LifeCourse

44. Everyone Has A Starting Point Vision of What I Don’t Want

46. Long Term Daily Supports

47. Community Living: Housing

48. Daily Life: Employment

49. Overall Quality of Life

50. Our Uncharted Life