1. Supporting Families & Getting Level 3 Changes July 23, 2014 Mary Lee Fay National Association of State Directors of Developmental Disabilities Services (NASDDDS)

2. Seeing the Change that is Coming: Demographic Climate Change Aging demographics Federal and State funding Workforce NASDDDS NATIONAL ASSOCIATION OF STATE DIRECTORS OF DEVELOPMENTAL DISABILITIES SERVICES 2

3. National Institute on Aging Baby-Boom Generation

4. Larson, Edelstein, 2006 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

5. Pressures on Funding

6. States can’t afford to expand services that require 24 hour care.

7. 89% of People with I/DD are Supported by Family

8. Family Caregivers are the Backbone of the Nation's Long-Term Care System 39% of all adult Americans (2 of every 5) care for a loved one who is sick or disabled, an increase from 30 % in 2010. It is not just women doing the caregiving. Men are almost as likely to be caregivers as women (37% m; 40% w) 36% of Americans between ages 18 & 29 are caregivers Almost half of family caregivers perform complex medical/nursing tasks for their loved ones — such as managing multiple medications, providing wound care, and operating specialized medical equipment.

9. The Role of Family Members is Critical 85% of older family care recipients receive care from their spouses or children.

10. Families as Primary Caregivers 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. 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

12. The Question Is….. Not whether people who are aging and/or disabled will be living with and relying on their families for support but…… whether they 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.

13. 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

14. Reframing Our Thinking What have we learned? Reframing the Conversation at All Levels

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16. DC CTMO TN WA OK

17. 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.

18. Type of Change that is Needed 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 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 Creating Blue Space, Hanns Meissner, 2013

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

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

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

22. Reciprocal Roles of Family Members 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

23. Systems Change Framework *Adapted from SELN Framework