1. Imagine that NO becomes MAYBE and MAYBE gives way to WHY NOT! Add hope to fuel dreams, goals and outcomes of a people that time once forgot. ~by Don Lavin, “A New Vision”

2. Supporting Good Lives for All  Nancy Richey  April 22, 2016  PACA Conference

3. In the next two hours:  National Community of Practice  Concept of “ALL”  Foundational beliefs of the LifeCourse Framework  LifeCourse tools (with exercises)  Next steps for PA

4. What is the Lifecourse Framework?

5. Putting the Lifecourse Framework Together!

8. EXERCISE!

10. WINGSPREAD REPORT, 2011 RECOMMENDATION 1: Design the structure and functions of state service systems to include a focus on supporting families reflective of the fact that most people with I/DD are living with their families in the community.

11. Wingspread report, 2011  Identify strategies for collaboration and support with local and statewide family-focused organizations or networks that can assist in the development, implementation and evaluation of strategies for supporting families.  Establish mechanisms to maintain ongoing dialogue with families, services system representatives and other key stakeholders involved in supporting families.

12. Wingspread report, 2011  Increase opportunities for self/family directed service options.  Build the capacity of supports coordinators to support and plan with persons with I/DD within the family unit.

13. Wingspread report, 2011  Identify and fund strategies for assisting individuals with I/DD and their families to navigate both disability and community services and supports, including informal or natural supports.  Provide training to all stakeholders on supporting persons with I/DD within their natural homes and communities, accessing community services along with disability supports as needed.

14. the national community of practice  Grant from AIDD, awarded to NASDDDS, UMKC, HSRI  5 states plus Missouri as mentor state  5 year initiative, entering 4 th year  Expansion to more states starting July 1, 2016  PA accepted in February to join national Community of Practice  What joining will mean for PA

15. 12 more states joining as of 7/1/16

16. type of change that is needed “Retooling” the system and its practices to fit the new model Mergers, consolidations, reorganizations, revising systematic payment structures, creating new services, processes, systems and products to replace the traditional one Fundamental reordering of thinking, beliefs, culture, relationships, and behavior Turns assumptions inside out and disrupts familiar rituals and structures Rejects command and control relationships in favor of co-creative partnerships  Transitional Change  Transformation Change Creating Blue Space, Hanns Meissner, 2013

17. 100% 4.7 Million people with developmental disabilities ** Based on national definition of developmental disability with a prevalence rate of 1.49% 75% National % Receiving State DD Services 25% 1 and 4 Persons with I/DD Receive Formal State DD Services

18. Where 100% of Person with I/DD Live Larson, S. A., Lakin, K. C., Anderson, L., Kwak, N., Lee, J. H., & Anderson, D. (2000). 89% of People I/DD live with family or in their own home

20. ALL: Public Health Framework Medical System Flu Shot Hand Washing Anti-Bacterial Soap

21. Developing innovative strategies for transformation within and outside DD system Eligibility Based Supports -Family and Self-Advocacy Networks -Simplify the front doors -Give families a different, positive narrative -Inclusive education with supports -Adaptive equipment -Problem Solving and Life Navigation -Universally designed and affordable homes -EMT and Police knowledgeable and supportive -Strong families and friends to share lives with -Inclusive and accepting spiritual and recreational opportunities -Changes in public spaces that work for ALL -and much more….

22. Foundational Beliefs

23. 23 Core Belief: All people and their families should be able to live, love, work, play and pursue their dreams and aspirations in their communities.

24. 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 

25. lifecourse framework basics A Good Life for All The individual will achieve self-determination, interdependence, productivity, integration, and inclusion in all facets of community life Families will be supported in ways that maximize their capacity, strengths, and unique abilities to best nurture, love, and support all family members to achieve their goals

26. Services and Supports are Evolving Everyone exists within the context of family and community Traditional Disability Services Integrated Services and Supports within context of person, family and community

27. Family Life Cycle Individual Life Stages And Family Cycles Individual Life Stages

28. 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 Reciprocal Roles Between all Family Members *Adapted from Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

29. The LifeCourse Tools  Trajectory Toward a Good Life  Life Domains: Outcomes and Possibilities  Three Buckets of Support  Integrated Supports Star

30. These 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

31. Life Trajectory: Experiences and Life Stages

32. 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 L. Sweet Vision for a Good Life

33. Trajectory towards Good Life Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Vision of What I Don’t Want Trajectory towards Life Outcomes Trajectory towards things unwanted NOW:

34. Trajectory Isn’t Always Straight Spending time with the Family for Holidays Behavioral Incidence or Crisis

35. 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 a job VolunteeringGetting a home

36. EXERCISE!

37. Life Domains: Life Experiences and Life Possibilities

38. Achieving Outcomes for Connected 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)

39. Looking at Life Possibilities Innovative Very new or undiscovered Islands of Innovation Exists in a lot of places but not everywhere Traditional Options Services that have existed for a long time

40. THREE BUCKETS Discovery & Navigation (Information and Training) Connecting & Networking (Talking to someone who has “been there”) Goods & Services (Day-to-day supports at home, work, and in the community)

41. INTEGRATED SUPPORTS Technology Relationship based Personal strengths & assets Community basedEligibility Specific A USEFUL TOOL FOR: Problem-solving Identifying strengths Exploring options Seeing opportunities

42. Eligibility Specific Community based Technology Personal strengths & assets Relationship based Uses iPad and communication app, ProLoQuo2Go Enjoys Youtube, especially Nascar fiery crash clips Loves “Classic Vinyl” hard rock on Sirius Radio Uses Sonicare toothbrush Uses electric shaver Enjoys his extensive VCR tape collection of favorite movies from childhood DAN had friends while in high school (need to reconnect) enjoys being with cousins, aunts, and uncles (don’t live nearby) Likes working on things with others Loves parties and being in groups of people who are having fun Discerns real people: no time for phonies! Loves accomplishment and success Strong work ethic Makes his own breakfast Great personal hygiene Likes being helpful Person-Directed Supports Has 4 incredible hab workers Has become very close with all of their families (they include him in many things) Has private secondary insurance Stayed in school until 21, had great high school experiences Volunteers weekly at Central PA Food Bank Helps 4 elderly ladies with errands and chores every week Working on exploring best employment opportunities through Discovery process Loves shopping and getting into the community every single day Loves neighbors at home and at cabin

43. EXERCISE!

44. next steps for PA

45.  Coordinated by Vision for Equality  Curricula to be developed jointly with ODP  Content for families will be centered around envisioning a good life, using lifespan tools, and seeing supports and services in a new way  Family Advisors across the state will help families to connect with each other, support mentoring relationships, and help to identify community resources. The PA Family Network

46.  Ten family members across the state selected engaged now in becoming fully-credential PCT Trainers Person- Centered Thinking Trainers

47.  Launching July 1 with a plan to support self-advocate training and mentoring across the state, and will work in parallel efforts with PA Family Network and within Regional Collaboratives Self- Advocates United as One

48. 6-8 Regional Collaboratives  Counties, SCOs, ODP, providers, self- advocates and families, as well as community partners working together to build commitment, strength and new approaches in local areas to better support real lives.

49. What you can do now:  Spread your interest in this initiative in conversations with all.  Talk within counties and begin to explore approaches and strategies for a regional collaborative.  Talk with people about the PA Family Network, and encourage they also spread the word to families about opportunities to learn about the lifecourse tools.  I’ll go anywhere!  Visit the websites and learn what the other 6 states have been doing.  Support people to envision and expect a full and meaningful life!

50. Putting the Lifecourse Framework Together!

51. Questions?

52. www.supportstofamilies.org www.lifecoursetools.com Thank you! Nancy Richey 717-783-1003 c-nrichey@pa.gov