Best Practices in Advocacy
Eldon L. Wegner, Ph.D.
Fifth National Conference for
Caregiving Coalitions
San Francisco, April 27, 2011
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.
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;
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.
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.
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;
HFCC Goal
To give political voice to the needs of
family caregivers and shift the long-term
care spotlight to FAMILY CAREGIVING.
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.
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.
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.
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.
• 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.
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;
• 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.
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.
• 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.
• 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.
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;
• 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.
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.
• 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.
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.
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.
• 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;
• 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.
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.
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.
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;
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.
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;
• 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.
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.
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