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Embedding a Whole Person Approach into the Emerging System of I/DD
ServicesJoshua Boynton, CMAA, Managing Director, VERTESS
Karen Luken, MS, Disability and Health Consultant
June 11, 2018
Raleigh, North Carolina
• 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
The Gist…..
The Perfect Storm
Increased Life Span
19 Years in 1930
66+ years today
Aging Caregivers – The Woodwork Effect
• 5 million Individuals with IDD
• 635,000 Formal “Out of Family” Residential Care
• 3.5mm live with family caregivers & 900k are living with aging caregivers.
Class Action Litigation
• (Olmstead, WL Cases 125K people on the WL, Access to Benefit cases)
Deinstitutionalization
• Demographic/resource dilemma (Growing demand and shrinking means.)
• Policy Shifts• Workforce • Health Disparities• New Players (i.e. Kansas, Iowa, Tennessee,
NJ, Arizona)
National Council on Disability – Guiding Principles for Successfully Enrolling People with Disabilities in Managed Care Plans1
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
Paradigm Shift
You Have the Key…..
Public System Must-Haves
• Core values• Critical elements• User-friendly and responsive
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
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
Engagement
• 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
Continuity of Care
• Acknowledgement that services to people with I/DD are long-term, often life-long, and are available continuously
• Transitions are managed seamlessly
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
How are other states restructuring their public systems to better achieve whole person care in I/DD?
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?
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?
Recommended Policy and Process Changes
Explore. Dream. Discover…..
