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Supporting Families throughout the Life Course

Supporting Families throughout the Life Course. July 23, 2014 Mary Lee Fay National Association of State Directors of Developmental Disabilities Services (NASDDDS). Outcomes for Today. What is changing around us Impact of change on state systems

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Supporting Families throughout the Life Course

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  1. Supporting Families throughout the Life Course July 23, 2014 Mary Lee Fay National Association of State Directors of Developmental Disabilities Services (NASDDDS)

  2. Outcomes for Today • What is changing around us • Impact of change on state systems • Responding to change – Supporting Families throughout the life course

  3. A Vision that People….. • Will be healthy, happy and safe • Will have family and friends in their lives • Will go to school and be fully involved • Will work at a good paying job • Will make decisions about their life – both major and minor • Will be contributing citizens of their community • Will have dreams that come true

  4. The job of leaders is to see what’s changing and figure out the best response.

  5. Demographic Climate Change • Aging demographics • Federal and State funding • Workforce NASDDDSNational Association of State Directors of Developmental Disabilities Services

  6. Aging Baby Boomers Baby Boomer Tsunami Every day 10,000 Baby Boomers qualify for Social Security

  7. Cost of Long Term Care = Aging $44,479 $16,900 $41,400 $83,950 National Data from the Genworth 2013 Cost of Care Study Home Care Providers, Adult Day Health Care Facilities, Assisted Living Facilitates and Nursing Homes

  8. Competition for Funds in the Future Social Services Funding

  9. Shortage of Care Givers Larson, Edelstein, 2006

  10. Shortages of Caregivers as America Ages A labor shortage is worsening in one of the nation's fastest-growing occupations—taking care of the elderly and disabled-just as baby boomers head into old age. Wall Street Journal, April 15, 2013

  11. Confronting Reality Growth in public funding will slow Workforce will not keep pace with demand The Waiting List

  12. Thinking about Cost for the Long Term Data Source: Lakin, K.C. MSIS and NCI data from 4 states (1,240 Individuals)

  13. Reality We can’t afford out-of-home 24-hour staffed models of support for everyone;Families have been and are the primary support for people with I/DD

  14. How Are We Responding?

  15. Big House State Op ICF-MRs The idea is to nudge a system down the incline to reduce per person expenditures. The idea is to nudge a system to be person-centered, to support families, and involve people in their community. CommunityICF-MRs Highest Cost HCBS WaiversComprehensive & Specialty Waivers Supports Waivers State Funded Family Support Services Nudging the System Lowest Cost Employment Source: John Agosta, Human Services Research Institute

  16. People living with family: 89%

  17. Families as Primary Caregivers Place of Residence for Service Recipients with IDD 1998 - 2011 57.9% Arizona 86% Calif. 71%Florida 70% Idaho 75%* S.C. 72%* N.J. 71% RISP 2011 RTC on Community Living UCED U of Minnesota

  18. The Questions Is….. Not whether people who have developmental disabilities will be living with and relying on their families for support but…… whether people and their families will struggle alone or have a great life because the supports are there for them and they are part of their community.

  19. Does Everyone Have to Live with Their Family? No. It means we have to maximize the extent to which as many people as possible can live great lives without 24 hours of paid supports using RELATIONSHIP-BASED OPTIONS. • Family • Extended Family • Friends • Shared Living • Independently or with a friend • Paid Companion

  20. Applying the Life Course Perspective Healthy & Happy Friends & Family Discovery Meaningful Activity Connections Day-to-Day

  21. Tennessee • Washington • Missouri • Connecticut • District of Columbia • Oklahoma supportstofamilies.org

  22. 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.

  23. Type of Change that is Needed Transformation Change 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 • “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 Creating Blue Space, HannsMeissner, 2013

  24. 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 it too.” Simon Sinek, startwithwhy.com

  25. 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.

  26. INDIVIDUALSlive within the context of THEIR FAMILY

  27. Lifelong Impact of Family 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

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

  29. Focusing on ALL All 4.9 Million people with developmental disabilities 25% 75% National % Receiving State DD Services Based on national definition of developmental disability with a prevalence rate of 1.49%

  30. Thinking About All Life Stages Both in practice with individuals and in policy changes for systems Birth---Early Child---School------------Transition--------------------Adulthood------------------Aging

  31. A Vision for Supporting Individuals & Families Individual with Disability: achievement of self-determination, interdependence, productivity, integration and inclusion in all facets of community life Families: will be supported in ways that maximizes their capacity, strengths and unique abilities so they can best support, nurture, love and facilitate…… Birth-----Early Child------School-------Transition------------------------------Adulthood--------------------------------Aging *National Definition for “Supporting Families” (2011 Wingspread)

  32. Family as system The family unit is a system with cycles

  33. Reciprocal Roles of Family Members

  34. Supports should enhance real lives

  35. Current Support System

  36. Real People, Real Lives with Integrated Supports

  37. Identifying What is Impacting Life's Trajectory Vision for Good Life Trajectory towards Outcomes Vision of What I Don’t Want Trajectory towards things unwanted Both in practice with individuals and in policy changes for systems

  38. Applying the Life Course Perspective Uncharted with Supports • Trajectory • Transition • Life Events Charted Birth-----Early Child----School----Transition----------Adulthood----------Aging

  39. Bigger than Family Support:Requires Organizing Culture, Policies &Practices Birth-----Early Child----School----Transition-----------Adulthood--------Aging

  40. Thinking Across All Life Domains

  41. Integrated Strategies for Supports: Not just formal services

  42. Inter-Agency Collaboration & Partnerships Pediatrician, Families and Friends, Faith-based IDEA Part C, Parents as Teachers, Health, Headstart School, Special Education, Health, Recreation Vocational Rehab, Health Employment, College, Military Disability Services, Health, Housing, College, Careers Retirement, Aging System, Health

  43. How are states creating level 3 changes around supporting families • Changing what happens at the front door • Cross department life span team • Creating Parent to Parent Network • Integrating “supporting families” into the K Plan • Surveyed families who were on the “no paid services”

  44. What is happening in the CoP States? CT MO DC OK WA TN

  45. Systems Change Framework *Adapted from SELN Framework

  46. Support Physical, Emotional, Intellectual and Financial Well-being

  47. A good life is often an uncharted life

  48. Community Living: Housing

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