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Embedding a Whole Person Approach into the Emerging System of I/DD Services Joshua Boynton , CMAA, Managing Director, VERTESS Karen Luken , MS, Disability and Health Consultant June 11, 2018 Raleigh, North Carolina The Gist.. 5 Million


  1. Embedding a Whole Person Approach into the Emerging System of I/DD Services Joshua Boynton , CMAA, Managing Director, VERTESS Karen Luken , MS, Disability and Health Consultant June 11, 2018 Raleigh, North Carolina

  2. The Gist….. • 5 Million people live with a developmental disability (US) • 741,000 People receiving Medicaid Residential • 65 + Billion PLUS (not including PH) • Living with Family Caregivers 3.5mm • Living with Aging caregivers 900K • HCBS Wait-list – 400K • http://kff.org/health-reform/state-indicator/waiting-lists-for-hcbs-waivers/ • http://www.stateofthestates.org/documents/UnitedStates.pdf

  3. Th The e Pe Perfec fect t Storm orm • Demographic/resource dilemma (Growing demand and shrinking means.) Increased Life Span 19 Years in 1930 66+ years today • Policy Shifts • Workforce Aging Caregivers – The Woodwork Effect • 5 million Individuals with IDD Deinstitutionalization • Health Disparities • 635,000 Formal “Out of Family” Residential Care • 3.5mm live with family caregivers & 900k are living with aging caregivers. • New Players (i.e. Kansas, Iowa, Tennessee, Class Action Litigation • (Olmstead, WL Cases 125K people on the WL, NJ, Arizona) Access to Benefit cases)

  4. Nati tion onal al Cou ouncil ncil on on Di Disab sabil ility ity – Guid iding ng Principl nciples es for or Successful cessfully ly Enrol olli ling ng Peop ople ns 1 with th Di Disab sabilitie lities s in Managed naged Care re Plans 1. Community Living 12. Information Technology 2. Personal Control 13. Capitated Payment Systems 3. Employment 14. Continuous Innovation 4. Support for Family Caregivers 15. Maintenances of Effort and Reinvesting Savings 5. Stakeholder Involvement 16. Coordination of Services and Supports 6. Cross Disability – Life Span Focus 17. Assistive Technology and Durable Medical Equipment Quality Management 7. Readiness Assessment and Phase in Schedule 18. Civil Rights Compliance 8. Provider Networks 19. Continuity of Care 9. Transitioning to Community-based Services 20. Due Process 10. Competency and Expertise 21. Grievances and Appeals 11. Operational Responsibility and Oversight

  5. Pa Paradi adigm gm Shift ift

  6. Yo You u Ha Have ve the e Key ey …..

  7. Pu Publ blic ic Sys ystem em Mu Must-Haves Haves • Core values • Critical elements • User-friendly and responsive

  8. Accountability • Efficient use of public funds • Transparent in its processes and outcomes, including outcomes, evaluation, reporting • Responsive to deficiencies • Adherence to core values • Adherence to contractual obligations • Adherence to rights of persons served • Data Sharing and Meaningful Collaboration, including the HIEA

  9. Access to Care: Expanding Access • All people with I/DD have access to the health and habilitative care they need. • Address the Registry of Unmet Needs: decrease the waiting list • Access to the full array of HealthCare services • Care Management and Navigation

  10. En Enga gagem gement ent • Active consultation with the users of the I/DD system: individuals with I/DD, families, professionals • Responsiveness to stakeholder input • Support to make informed choices

  11. Cont ontinuit inuity y of of Care are • Acknowledgement that services to people with I/DD are long-term, often life- long, and are available continuously • Transitions are managed seamlessly

  12. Whole Person Focus • LTSS are recognized as one part of an array of services supporting a person’s improved quality of life. • Social Determinants of Health are addressed as people with disabilities are also at risk of experiencing poverty, isolation, food insecurity, etc. • Collaborative Care between I/DD and Primary Care providers and Specialists • Services, outcomes and success measures must be inclusive of the whole person

  13. Ho How are e ot other her st state tes s res estructuring ructuring their eir public blic sy syst stem ems s to o bet etter ter achie hieve ve whole ole per erson son care re in I/ I/DD? DD?

  14. Personal Perspectives • If you were in charge what 3 changes would you make? • What is missing from today’s system? • How will you know that the “system” is supporting individuals with disabilities and families? • “Connecting the dots” and navigating the system is a challenge. What needs to change so this is easier for individuals and families?

  15. Professional Perspectives • If you were in charge what 3 changes would you make? • What is missing from today’s system? • How will you know that the “system” is supporting individuals with disabilities and families? • “Connecting the dots” and navigating the system is a challenge. What needs to change so this is easier for individuals and families?

  16. Re Recom ommended mended Po Polic icy y an and Pro d Process cess Cha hanges nges

  17. Ex Explore. lore. Dream. eam. Dis iscover over …..

  18. Th Thank ank Yo You Josh Boynton jboynton@vertess.com Karen Luken karenluken@gmail.com

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