1. A Call to Action in Culture Change Advocacy: Preparing for the New Informed Consumer 36th National Consumer Voice for Quality Long- Term Care Annual Conference & Meeting Sonya Barsness, Pioneer Network Rose Marie Fagan, Consultant Kim McRae, Have A Good Life

2. Exploring, Discovering, Changing with Consumers Engaging Consumers: Personal Transformation StateLocalNational

3. Exploring Nationally

4. Who Are These Consumers? 40 million elders 78 million Baby Boomers = More Aging Parents! (71% have at least one living parent) Individuals turning 65 may need 3 years of long-term care in their lifetime 70% individuals 65+ will need some type of long- term care –40% will need nursing home care

5. WE ARE ALL CONSUMERS

6. Why Consumers? * Culture Change is becoming more “mainstream” * Consumers are learning about Culture Change and person-centered care * BUT not all providers are convinced this is what consumers want – so they think there is nothing to change

7. When consumers make their preferences known and demand change, it is more likely to happen.

8. Pioneer Network Engaging Consumers in Culture Change Phase 1:Changing the Culture of Aging: Taking a First Step to Creating Knowledgeable Consumers, –Funded by the Picker Institute –National pilot partners included AHCA, American College of Health Care Administrators, AMDA, Coalition of Geriatric Nursing Organizations, Leading Age and The National Consumer Voice for Quality Long-Term Care

9. The “Creating Home” Pilot –Creating Home: Advocating for Change in How and Where We Age curriculum –Goals: educate consumers about long-term care and Culture Change determine if consumers are interested in this topic and further action learn about how to best educate consumers about Culture Change

10. The “Creating Home” Pilot Four states (FL, GA, MA, OR) Over 500 meeting participants Sixty-one meetings Meetings: –2-hour book club format (interactive & experiential) –Meeting kit for facilitators with participant handouts

11. What Did We Learn? Consumers interested in culture change Consumers “don’t know what they don’t know” Interested in advocacy (63%) Wanted more information on “what culture change looks like” Much concern about affordability

12. Creating Home Consumer Engagement: Phase 2 Changing the Culture of Aging Phase 2: Next Steps to Supporting Knowledgeable Consumers –Funded by Picker Institute –Elevated consumer outreach as an integral part of our culture change advocacy

13. Revision of Creating Home Curriculum What does culture change look like Affordability of culture change Support for family members Frequent consumer comments Reduction in production costs

14. Expansion of Creating Home Meetings 22 states participated –AL, AR, CA, CO, FL, GA, IL, IN, KS, KY, LA, MA, MI, MO, NY, OH, OK, OR, PA, VA, WA, WI 205 meetings held Over 1,500 in attendance

15. Creating Home Meeting Participants

16. What do we know about the participants? 95% have visited NH or ALF 7% lived in one 63% family caregivers (55% of elders in NH/ALF)

17. Did consumers gain knowledge? Pre- and post-test evaluations Rated higher level of agreement with all statements after meeting Most knowledge gain: –Increased understanding of difference between traditional nursing homes and those practicing person-directed care –Increased understanding of what culture change is

18. Were consumers interested in topic? Topic is relevant Interested in culture change Supportive of culture change –97% agreed/strongly agreed they would rather live in culture change community –98% agreed/strongly agreed that culture change needs to happen

19. “Very fine program. I am excited that change is possible- I hope it happens quickly!”

20. Do consumers intend to act? 56% interested in involvement in state culture change coalitions 81% intended to obtain more information about culture change 93% intended to share info with family/friends Before meeting, 27% consumers felt they have the power to transform long-term care (47% after meeting)

21. “What can the common person do?”

22. “I would like to know the best way to become an active advocate in this area to reach our government leaders. As a child of aging parents and seeing what they have gone through, I would like to be a 'voice" for change.”

23. What did we learn? Effective means of presenting information to consumers Participant recruitment challenging Themes from consumers: –HOW do we advocate as consumers –Affordability concerns –Which homes in my area are doing this?

24. “[I would like to know more information about…]ways to pay for and plan to pay for these culture changes.”

25. BUT, THERE’S MORE….

26. AARP/Pioneer Network Webinar “Live a Good Life Wherever You Call Home: How Long-Term Care is Changing to Meet Your Needs” Speakers: Rose Marie Fagan & Karen Stobbe 412 individuals participated 671 have viewed since webinar aired

27. Consumers & Pioneer Network Website “A Guide to Better Care Options for an Aging America” Virtual tour of nursing home –Examples of possible environmental changes http://www.pioneernetwork.net/Consumers/ BetterCareOptionshttp://www.pioneernetwork.net/Consumers/ BetterCareOptions

28. Inform, Transform, Inspire Collaboration with Colorado Culture Change Coalition Based on Creating Home curriculum To be used by “ambassadors for culture change” http://www.pioneernetwork.net/Consumers/I nformTransformInspirehttp://www.pioneernetwork.net/Consumers/I nformTransformInspire

29. Financial Planner Pilot Financial Planners as consumer “influencers” Conducted Creating Home meeting with group of financial planners in GA Conducted second Creating Home meetings for financial planners’ invitees

30. What did we learn from the Financial Planner Pilot? Financial planners might not be very knowledgeable about long-term care Found topic interesting and important Creating Home meeting could be valuable to their clients –Educational –Opening the conversation about long-term care and retirement planning

31. Opportunities Continuation Creating Home meetings Strengthened partnerships with state coalitions to support them in consumer advocacy Reaching out to consumers in additional ways

32. Identifying concrete consumer advocacy strategies Strengthening national partnerships with consumer advocacy organizations Reaching culture change “influencers”

33. “I thought it was very interesting about new ideas for group activity. I lied that they are not regulating meal times.”

34. “This was probably the first paperwork that all but one filled out themselves instead of someone else filling or doing for them”.

35. Let’s keep filling in the map!

36. VISIONING!

37. What are you doing to engage consumers in culture change?

38. What would you like to be doing (but aren’t)?

39. What are your challenges/barriers in engaging consumers in culture change?

40. What do you need to engage consumers in culture change?