1. LifeCourse Thinking and DD Council Strategic Planning Michelle “Sheli” Reynolds, SIB, PhD Co-Director National CoP on Supports to Families UMKC, Institute for Human Development, UCEDD June 30, 2015

2. Key Areas of Learning Introduce the LifeCourse framework that is being used to change conversations at all levels for systems change Share how the Missouri DD Council used the framework and tools to guide its strategic thinking over the last year Provide concrete ideas on how framework can impact strategic planning for a DD Council 5-year state plan Discuss activities happening within the 6 states of the Community of Practice on Supporting Families.

3. 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. DC CT MO TN WA OK

4. Funded by National Partners

5. 5 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.

6. What we know about current realities? 6 Expectations, Values, Culture Capacity of Work Force Federal Budget Demand for Services Community Family Social Services Person with Disability Federal Policy

7. Transforming Services and Supports

8. Focus on “ALL” ALL individuals and their families are considered in our values and vision. (Family is defined by the Individual) 100%

9. Focus on “ALL” 100% All 4.9 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%

10. Of the 25% receiving services 57.9% live within the Family Home 57.9% Arizona 86% Calif. 71% Florida 70% Idaho 75%* S.C. 72%* N.J. 71% Place of Residence for Service Recipients with IDD 1998 - 2011 RISP 2011 RTC on Community Living UCED U of Minnesota

11. Mo DDC Thinking About Initiatives 13% 65% ( 62,498 ) Enrolled HCBS DD Services State DD Services Targeted Case Management 19% Based on 1.58% prevalence of 3.815 million citizens, US Census 95,498 estimated Missourians with Developmental Disabilities 3% ICF/DD

12. All individuals live within the context of a family Family is defined by the person and Incudes members regardless of where they live

13. Goal of Supporting Families

14. Family Life Cycle Developing Person Centered Systems and Policy within the Context of Family Individual Life Cycle

15. Thinking Across all Life Domains Daily Life and Employment (education/employment, life skills) Community Living (housing, transportation, community access) Social and Spirituality (friends, relationships and leisure activities) Healthy Living (medical, behavioral and mental health, wellness, nutrition) Safety and Security (emergencies, legal, well- being, guardianship and alternatives Citizenship and Advocacy (leadership, peer support, making choices, setting goals)

16. Think Across Life Stages and Generations Age 0-56-1819-6465 MD Total Population 368,201 (6.2%) 1,348,093 (22.7%) 3,426,651 (57.7%) 795,790 (13.4%) DD MD (1.58%) 5,81721,29954,14112,573 Known or Active in MD DDA 314491121,8971,438 Based on 1.58% prevalence 5,938,737 citizens, US Census 2013 Based on May 2015 Data from MD DDA

17. Trajectory towards Good Life Trajectory towards Outcomes Trajectory towards things unwanted Friends, family, self-determination, community living, social capital and economic sufficiency Friends, family, self-determination, community living, social capital and economic sufficiency Vision of What I Don’t Want

18. Focusing on Life Experiences Birth-----Early Child----School----Transition---Adulthood-------Aging “Anticipatory Guidance for Life Experiences” “Chores and allowance” “Birthday parties with friends” Learning to say “no” “Playing sports or an instrument” “Volunteering at church”“Making mistakes”

19. The Star: Integrating Supports Person or family resources, abilities, strengths, characteristics Family, friends, neighbors, co- workers, community members, church members School, businesses, Church/faith based, public transportation, Parks and recreation Disability Services, Special Education Medicaid, Housing, Food Stamps, Vocational rehab i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment

20. Mapping Strategies for Supporting Families Across the LifeCourse Discover & Navigation Connecting & Networking Goods & Services

21. There must be opportunities for Self-Advocates and Families to Engage, Lead, and Drive their Own Supports and Impact Policy and Systems Change

22. EXPLORING AND CREATING UNIVERSAL STRATEGIES FOR TRANSFORMATION LIfeCourse Framework

23. a Life Birth School SSI Trajectory toward life Disability path LABELED WORLD Poverty Special programs Depend upon public funding Isolation – even segregation Human Service Path Adulthood Guardianship Medical spend down 23 Washington Community of Practice Adapted from National CoP Supports to Families, 2015

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

25. Constructing Universal Strategies for Supporting Families Across the LifeCourse Eligibility Based Supports -Family and Self-Advocacy Networks -Inclusive education with supports -Adaptive equipment -Problem Solving and Life Navigation - Universally designed and affordable homes -Grocery carts for older kids -EMT and Police knowledgeable and supportive -Strong families and friends to share lives with -Inclusive and accepting spiritual and recreational opportunities

26. DD Council Planning and Activities Using Universal Strategies for Supports Across LifeCourse Initiatives, projects or policies that focus on person centered supports within the context of families within Long Term Services and Supports Initiatives, projects or policies to enhance or build Public-Private Partnerships that support across LifeCourse Initiatives, projects or policies focused on enhancing communities and/or creating social awareness on supporting families ??

27. PUTTING FRAMEWORK IN ACTION TO ENHANCE PEOPLE’S LIVES LifeCourse Framework

28. Applying the STAR: Individual Level Meet Ben

29. Ben’s Life Trajectory

30. 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, ES 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 PCA –DDD, self- directed supports Social Security, Medicaid, Special Needs Trust Outgoing personality, friendly, Eagle Scout, can ride city bus Ben’s Integrated Services and Supports

31. Ben’s Integrated Supports Weekly Schedule

32. PUTTING FRAMEWORK IN ACTION TO THINK ABOUT PROJECTS AND ACTIVITIES LifeCourse Framework

33. Oklahoma Reframing Wait List Discussion Information about Oklahomans with DD on Waiting List 0-56-1819-6465+TotalDetails 62425793714596,976 Names on Waiting List 114620850111,695 On list, No known public benefits 51019592864485281 On list, Getting Some Public benefits

34. Trajectory Towards Employment Poverty No opportunities Sheltered Employment Dependence on Govt Education Career Job of Choice Economic Sufficiency $ for Home & Fun

35. Applying the STAR: Project Level Connecticut Systems Change

36. Projects Organized by 3 Buckets Discover & Navigation Connecting & Networking Goods & Services

37. Tennessee Communication Tools for Reframing (e-newsletter, magazine, folder, website, social media)

38. Missouri Consistent Message Across the LifeSpan Family to Family at Missouri UCEDD Early Childhood, Part C School Districts, Special Education PNS Show Me Career Grant Pilot Sites State Division of Developmental Disability Special Health Care Needs

39. Partnering to Change “The Letter”  Show Me Pilot Community organizations all recognized this as something important to them  Partnered with F2F to use Alternative to Guardianship materials  Getting the right materials into the hands of the people on the front line who could get them to families

40. Peer Support Practices Tennessee: Created sub-committee enhancing, connecting and sustaining District of Columbia: State has contracted with P2P USA to assist in starting chapter Washington: Adult Sibling Focus group Connecticut: Hosted Parents with Disabilities conference

41. Leadership Development Oklahoma: Statewide Joining Forces Family Leadership Conference and Rural Leadership Institutes and Partners in Policymaking District of Columbia: Family and Self- Advocacy Stipends, Advocacy Training with Georgetown Connecticut: Facilitating bringing together Family and Self-Advocacy Networks

42. USING FRAMEWORK FOR PREPARING FOR DD COUNCIL STATE PLAN National Community of Practice States “I do not see the CoP as separate from the preparation we are doing for the State Plan. I hope the culture will be second nature to the State Plan and inform the goals and objectives we adopt. The information and data we gather from the CoP will become part of the comprehensive analysis for the state plan.” Ed Holen, Washington DD Council

43. CoP Impact on Washington DD Council Created a culture or atmosphere here where the ideas are being integrated into everything we are doing, both inside the system and outside the system. The more we talk and share about the concepts the more people are catching on. This influences: – New IFS Waiver and its services – Services to the 5,000 we will be bringing into services over the next year, – Development of the Community First Choice Option – DD Administration focus on front door and person centered planning before they come for their annual needs assessment. Strategies we adopt to collect feedback from specific groupings of families – Listening to senior family caregivers (through a survey we conducted) – Adult siblings (through two focus group discussions) – Parents who themselves have a developmental disability (through a meeting of parents we hosted) Provide tools and information to “information carriers”, i.e. those out there, again in the system and out of the system, who carry information and pass it along to individuals and families. This effort is being carried out in partnership with the DD Council’s communication project called Informing Families. Information is power for people and families.

44. CoP Impact on Tennessee DDC Survey Focusing Questions on Universal Strategies: – Ability to access generic community resources/businesses – Useful in local communities What is working well and what wasn’t in their local communities…(building on Michael Smull around person centered organizations) Specifically asked about investment in best practices for supporting families (both those who do and do NOT receive disability services) Getting Feedback from 75% – Asked people responding to the survey if they knew of any other groups – Multicultural Alliance on Disability to get survey out

45. Tennessee 5 Year Survey 5. Overall how would you rate the availability of traditional disability services in your local community? (organizations that provide services to people with disabilities like: day programs, supported employment, therapies, residential services, etc.) 6. Thinking about your local community, how would you describe the availability of generic community businesses and services that ALL citizens use that are welcoming to persons with disabilities and their families? (For example: your local library, recreational leagues, grocery stores, pharmacy, fast food restaurants, the local vacuum repair store...) 7. If the Council could address one specific need in your local community that would impact people with disabilities and their families, what need would you recommend we work on? 8. From the following list, please rank the listed priorities for the disability community in Tennessee in order from most important to you (1) to least important to you (12). Employment (jobs in the community at or above minimum wage) Inclusive recreation and leisure opportunities Accessible and affordable housing Self-advocacy training and grassroots development Leadership development for people with disabilities, family members and professionals Inclusive education (includes early intervention services and postsecondary education) Accessible and useful transportation Accessible and affordable health care Inclusive child care Public policy advocacy Public information and awareness Investment in best practices for supporting families (both those who do and do NOT receive disability services) 9. Thinking about your local community, please describe any unserved or under-served groups…who are they? How have they been overlooked? 10. Thinking of your local community, please describe what is working well, as far as both traditional services from the disability service system and generic community services for you and your family. Then please describe what is NOT working well.

46. USING FRAMEWORK FOR OVERALL STRATEGIC THINKING Missouri

47. DD Act Priority Areas and LifeCourse Domains

48. Projects by Life Stages and Domains

49. Projects by Life Domains, 3 Support Buckets and Integrated Star

50. Thinking About Content Expertise

51. Review Past 5 Year Plan Goals

52. Initial Exploration with Members

53. Needs Assessment and Data Sources

54. Putting the Framework Together!!

55. Questions or Comments? Sheli Reynolds reynoldsmc@umkc.edu 816-235-1759