Best Practices in Advocacy Eldon L. Wegner, Ph.D.

1. Best Practices in AdvocacyEldon L. Wegner, Ph.D. Fifth National Conference for Caregiving Coalitions San Francisco, April 27, 2011

2. Hawai‘i as a Social Context • Geographically, 7 populated islands, 2500 miles (5 hours flight) from North America; • 1.3 million population, the majority of Asian heritage, 20% Part-Hawaiian, >30% Euro-American; • 14% over 65, increasing to 25% by 2030, Greatest increase in the 85 +age group.

3. Squeeze on Family Caregivers • 70% of 65+ co-reside with adult children; • The number of nursing home beds in Hawaii is only 50% per capita of the U.S. average, resulting in a heavy reliance on family caregiving. • 80% of women are in the labor force;

4. The Macro Political Climate • American political ideology – limited role of government – caregiving is viewed as a family responsibility; • Global economic competition, supported by neo-conservative economic ideology, has created pressures to retrench public expenditures on social welfare provisions; • The current economic crisis has reduced revenues and resulted in the serious erosion of health and social services.

5. Beliefs Hindering Public Support for Family Caregivers? • Caregiving is a natural and valued activity by women who are obligated to fulfill caregiving roles (Asian culture: filial piety). • Public provision of assistance is undesirable due to “moral hazard” – families will reduce care they would normally provide for free.

6. Family Caregivers are Politically Marginalized • Are fully engaged with their private caregiving activities. • Typically have no experience with the political process; • Consequently, politicians do not see them at hearings or receive testimony from them on bills; • In contrast, adult residential homes, assisted living facilities, adult foster families constitute long-term care for-profit industries with strong lobbying efforts;

7. HFCC Goal To give political voice to the needs of family caregivers and shift the long-term care spotlight to FAMILY CAREGIVING.

8. Best Practices in Advocacy • Work with other senior advocacy groups; • Hold events to create visibility for family caregiving issues; • Build relationships with politicians and key administrators; • Participate in the policy dialogue; • Educate politicians and the public.

9. Work with Other Advocacy Groups • Each November, the HFCC meets with representatives from other advocacy groups: A. To decide on a single priority issue for the upcoming legislative session; B. To share other priorities of each advocacy group and note who will take the lead on different legislative issues.

10. Advantages of Collaboration • Speaking with one voice strengthens our political influence; • Dividing leadership on different issues reduces duplicate effort; • Co-sponsoring events, rallies, gives us more volunteers and other resources and produces bigger turnouts.

11. Events to Create Visibility for Family Caregiving Issues • In mid-January, The HFCC hosts a reception for legislators and staff just prior to the opening of the Legislative session. • The event is held in one of the large hearing rooms near their offices. • The event is festive: some years an ice cream social; Legislators are given flower lei; and we have live Hawaiian music.

12. Two or three caregivers relate their stories and the challenges they face in caregiving; • Because this was an election year, a White Paper, “The Aging Issues Agenda,” laying out the broad issues needing attention in the coming years, was written and endorsed by all the senior advocacy organizations. • During the reception the paper was distributed to all legislators and later to the new Governor and Department heads.

13. Family Caregiver Day and Resource Fair • In late March, HFCC holds an event in the hall around the atrium of the Capitol which brings out several hundred persons and 40 plus exhibitors; • The timing of this event is strategically after the mid-point of the Legislative session so that we can focus on key bills and financing issues;

14. Turn-out and visibility is enhanced by partnering with other organizations; • This year a March for Meals occurred in the late morning; • During the lunch hour, AARP held a rally in the capitol rotundra focused on funding senior services.

15. The Aging and Disabilities Issues Booklet • The annual Aging and Disability Issues booklet is distributed to all legislators and to the public attending on this day; • The booklet notes the significant bills regarding aging issues being considered in this legislative session and notes why they are important.

16. The purpose of the booklet is to encourage interested persons to voice their support of senior issues in the final weeks of the legislative session; • The booklet also contains caregiver photos and stories to give a face to the issues and have an emotional impact.

17. The booklet also addresses the fiscal crisis, by advocating for • Preserving the safety net of health and social services since further reductions could result in higher cost health and social problems; • Enacting revenue measures which would spread the burden of meeting the budget crisis over the whole population rather than relying on retrenchments which are devastating to the most vulnerable who depend on public services.

18. Legislative Walk-Arounds • Appointments are made with key legislative committee chairs and members of the House Finance and Senate Ways and Means Committees who make the funding decisions; • Caregiver support groups and provider organizations recruit family caregivers to participate; • After a short training, teams of advocates and caregivers visit the legislators;

19. The caregivers are given an opportunity to tell their story; the advocates cover the talking points for the bill(s). • The Legislative walk-arounds have proven to be a powerful lobbying tool by putting a face on issues. • The caregiver benefits by an empowering experience of telling their story and participating in the political process.

20. Build Relationships • Meet newly elected legislators to inform them about who we are; educate them about senior issues; and inform them of the number of seniors living in their district; • Prior to the legislative session, meet with key committee chairs, inform them of our priorities, and ask about their’s and how we can support them; • During the session, meet with committee chairs to exchange ideas about priority issues and seek advice about how to advocate for priority measures.

21. Learn whether a legislator has had family caregiving experience – that may be a key to winning a supporter; • Learn to understand the political realities faced by legislators, e.g. their particular constituents; • Over time, relationships become personal or even “colleagial” where there is credibility on both sides.

22. The Intersession: Being Pro-Active • Meet with department heads, providers and others to become educated on new issues needing attention; • Meet with the relevant Committee Chairs to request introducing new bills and to work out feasible strategy, identify allies, and so forth.

23. Participate in the Policy Dialogue • On an important bill, visit key legislators (committee chairs) to get acquainted; inform them of the priority of the issue for senior advocates; • You have 30 minutes: Be focused: Have an “Ask” -- something specific you are requesting -- their support on a measure, amending an existing proposal, etc. • Do your homework – know details of the proposal, know the issues which opponents have raised, have talking points.

24. Note the benefits not only for recipients of a proposed program but how it would have benefits for the legislator and the state; • Support the feasibility of your proposal by citing model policies and programs instituted in other states; • If possible, suggest specific ideas as to how a proposed program could be funded;

25. Offer data to support proposals – waitlist numbers and waiting times to demonstrate need, etc.; • Work with legislators during and between session to amend proposals to meet objections, increase their political feasibility (create taskforces, demonstration projects); • Have patience and be persistent – most proposals take several years (or more) before they are successfully enacted.

26. Broad justification Public policy support for family caregivers can delay or prevent higher cost institutional care and delay or prevent persons from having to enroll in Medicaid.

27. New Legislative Structures • The Kupuna (Elder) Caucus was formed which brings together committed legislators and persons from community agencies interested in elder issues; • Annually, new issues are brought to the Caucus and the Caucus legislators introduce a package of bills representing the priority issues of the Caucus.

28. The Joint Legislative Committee on Aging in Place • The mission is to propose comprehensive measures to support home and community-based services; • The Committee has formed task forces, funded studies, and undertaken policy analyses as steps in forming proposals;

29. Policy initiatives in process • An inventoried of respite services to identify gaps; • A respite service directory; • Expand availability and accessibility to respite services; • Paid family leave for employed caregivers; • Cash and counseling for non-Medicaid frail elderly; • Financial assistance or tax credits for home modification.

30. Educate Politicians and the Public • The HFCC developed fact sheets regarding family caregiving and the burdens of caregiving; • The annual Aging and Disability Issues booklet highlights specific proposals and notes general principles for public policy;

31. Letters to the editor when there are issues affecting eldercare; • HFCC helped establish regularly scheduled news segments, the KGMB “Genius of Aging” and the KHON “Elderhood” series. • HFCC members occasionally appear on TV and radio talk/public affairs shows.

32. Best Practices in Advocacy • Work with other senior advocacy groups; • Hold events to create visibility for family caregiving issues; • Build relationships with politicians and key administrators; • Participate in the policy dialogue; • Educate politicians and the public.

33. Contact Information Eldon L. Wegner, Ph.D. Professor Emeritus of Sociology University of Hawaii at Manoa wegner@hawaii.edu The Hawaii Family Caregiver Coalition c/o The Caregiver Foundation 95-099 Lauaki Place, Mililani, HI 96789 email: pacconltd@yahoo.com