Across the Advocacy Spectrum
#ALFA2014
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.� -Margaret Mead
#ALFA2014
YOU ARE AN ADVOCATE You already are an advocate if you’ve ever: •
Helped a family navigate tough choices
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Encouraged staff to provide better care
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Negotiated with an insurer
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Confronted dementia myths and stigma
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Stood up to an unsupportive family member
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Persuaded a resident to be more cooperative
#ALFA2014
RULES FOR EFFECTIVE ADVOCACY
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Build a team to advocate year-round
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Focus on the relevant government decision-makers
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Be honest and candid, polite and patient, persistent and persuasive (always have an “ask”)
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Maintain integrity and never attack other interest groups
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Opponents are not enemies so seek common cause
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Advocate for what should be achieved, not how to do it
#ALFA2014
MORE RULES FOR EFFECTIVE ADVOCACY
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Anticipate questions, admit uncertainty, follow-up with answers
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Be personal, share your story, stay “on issue” and prioritize “asks”
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Learn and relate to the interests of the government decision-maker
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Ask for (demand politely) fair treatment, not special treatment
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Insist on commitments and accountability to act on your “ask”
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At least be bi-partisan but work to be non-partisan
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Be respectful, attentive and responsive to young staffers
#ALFA2014
WHY ADVOCATE?
“Not everything that is faced can be changed, but nothing can be changed until it is faced.” -James Baldwin
#ALFA2014
WHY ADVOCATE? • •
Strengthen relationships among staff, vendors, and clients
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Be a voice for residents and families
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Encourage more access to better care and support
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Government controls the levers
Level the public policy playing field
– Funding – Service eligibility and availability – Regulation – Protection of rights
#ALFA2014
ADVOCACY TOOLS •
Day at the Capitol/
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Press Conference
Advocacy Day
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Letters to the Editor
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In-District Meeting
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Social Media
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Rally/Protest
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Online Petition
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Site Visit
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Letters, Calls, and Emails
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Issue Briefing
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Campaign Contributions
#ALFA2014
CANDOR
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Tell the brutal truth
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No hyperbole
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Honesty, humility, perspective
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Spur transformational change
#ALFA2014
WHAT IS TRANSFORMATIONAL CHANGE? SUCCESS IS NOT:
SUCCESS IS:
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Reports
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Eliminating stigma
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Plans
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Timely access to good care choices
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Meetings
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Person-centered care and engagement
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Expressions of concern
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Clear, usable, equitable and affordable
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Legislation and co-sponsors
regulations
#ALFA2014
AMBITION
“Start where you are. Use what you have. Do what you can.” -Arthur Ashe
#ALFA2014
ASPIRATIONAL GOALS
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We will attain our goals
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How soon depends on us
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Metrics and milestones with necessary resources
#ALFA2014
POWER
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Collaboration, not competition
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Economics and ethics
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Voting bloc
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Action, not resignation
#ALFA2014
ADVOCATE FOR SUPPORTS & SERVICES
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Full continuum: pre-symptomatic education through bereavement
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Stigma and awareness
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Access, affordability, quality
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Dementia-capability
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Cultural appropriateness
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Utilization
#ALFA2014
ADVOCATE FOR DEMENTIA-FRIENDLY COMMUNITIES
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Schools
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Workplaces
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Civic and faith organizations
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Public services and accommodations
#ALFA2014
ADVOCACY TARGETS
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Congress
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State Legislatures
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President and Governors
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Federal and state regulatory agencies
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Your colleagues and fellow stakeholders
#ALFA2014
COLLABORATION, NOT COMPETITION
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resources. But the same is true for many
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Care and support vs. science
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Prevention vs. treatment vs. cure
purpose.
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Amyloid vs. tau
We do not have to be friends. We must be
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Alzheimer’s vs. other dementias
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Dementia vs. other diseases
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Aging/health vs. other priorities
other issues. •
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Instead of battling over scraps, find common
allies. •
False Dichotomies
Dementia deserves more attention and more
This is both ethical and practical.
#ALFA2014
LEAD COALITION PETITION
http://www.leadcoalition.org/petition/
#ALFA2014
“Here are so many wants, so many affections and passions engaged, so varying in their interests and objects, that no one can be conciliated without revolting others.� -Thomas Jefferson, on the political culture of Washington, DC
#ALFA2014
MANIFEST DESTINY
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First PAC in 1944 •
Congress of Industrial Organizations (CIO) formed to raise money to re-elect FDR
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$600,000
2012 Election Cycle (FEC Data) •
7,311 total committees
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$2,259,100,000 in Receipts (Contributions)
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$2,198,400,000 in Disbursements (to Candidates/other Committees)
#ALFA2014
ARE ALL PACs CREATED EQUAL? Most Common PACs: •
Corporate PACs (PfizerPAC)
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Labor PACs (AFL-CIO)
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Trade PACs (ALFAPAC)
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Independent Expenditures/Super PACs
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Leadership PACs
#ALFA2014
ARE ALL PACs CREATED EQUAL? Separate Segregated Funds (SSF): •
Corporate PACs (PfizerPAC)
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Labor PACs (AFL-CIO)
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Trade PACs (ALFAPAC)
Non-Connected PACs: •
Independent Expenditures/Super PACs
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Leadership PACs
#ALFA2014
RULES OF THE GAME What is a Solicitation: •
What is Not a Solicitation:
Straightforward request for
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Does not encourage support of PAC
contributions
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Does not explain how to make
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Information on how to contribute
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Statements encouraging support of the
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Announce existence of PAC
PAC. “Our goal…”
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Explain laws applicable to PAC
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Provide statistical information about
contribution
PAC
#ALFA2014
MORE RULES OF THE GAME Restricted Class (Trade Association) •
Association executive/administrative staff
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Individual and unincorporated members
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Executives of corporate members that have signed prior approval
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1/3 Rule for raffles, prizes, entertainment
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Monthly filing with FEC for all candidate disbursements
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Monthly filing with FEC for all donors $200 or more/year –
Include name, occupation, employer, mailing address
#ALFA2014
CONTRIBUTION LIMITS Limits 2013-2014
Individual
Candidate/ Election
$2,600
National Party/Year
$32,400
State, District & Local Party/Year $10,000 Combined
Any PAC/Year
Special Limits
$5,000
None* ($123,200 before McCutcheon v. FEC) $45,400 per Senate Campaign
National Party
$5,000
No Limit
No Limit
$5,000
State, District & Local Party
$5,000 Combined
No Limit
No Limit
$5,000 Combined
None
PAC: Multicandidate
$5,000
$15,000
$5,000 Combined
$5,000
None
PAC: Not Multicandidate
$2,600
$32,400
$10,000 Combined
$5,000
None
#ALFA2014
CHALLENGES FUNDRAISERS FACE •
Explaining the rules of the game and ensuring they are understood •
The purpose of PAC is for the benefit of political candidates and activities on a national level that support our cause. Contributions to PAC are not deductible as charitable contributions for federal income tax purposes. Contributions from foreign nationals are not solicited or accepted. No corporate contributions can be accepted by Federal Law. All contributions must be personal or by Federal PAC. Federal law requires political committees to use their best efforts to report the name, mailing address, occupation, and employer for each individual whose contributions aggregate in excess of $200 in an election cycle. Contributions to PAC are voluntary and should you elect not to participate, you do so without any concern of retaliation.
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Explaining how the PAC benefits contributors
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Creating a sense of urgency
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Finding appropriate ‘thank yous’
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Defeating/overcoming the negative association of money in politics
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Finding unique events to turnout contributors
#ALFA2014
PACs AS ADVOCACY TOOL •
Use strategically •
Small, personal events
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Target champions of your cause
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It’s another touch
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Remember Jefferson
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If we’re not there, someone else (competitor?) will be
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Play by the rules of the game
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What are the most effective meetings? •
Mural Jackson Pollock 1943
Constituents with Members of Congress
#ALFA2014
PAC SCENARIO •
You are the PAC administrator for your SSF
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To increase contributions, you organize a meeting of members/executives, but will not turn away anyone interested in learning more
#ALFA2014
PAC SCENARIO II •
Lunch meeting •
Restricted class, plus anyone interested to learn more
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At the meeting, you ask PAC chair to explain why supporting PAC is important to organization’s goals
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Lunch is served
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Materials announcing the meeting ask individuals to RSVP to their boss
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Boss will report to you who attended and who did not
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This information will be useful in performance reviews as a measure of the employee’s commitment to the organization
#ALFA2014
THANK YOU FOR COMING!
Ian Kremer
Justin T. Worrell
Executive Director
Director of Advocacy
Leaders Engaged on Alzheimer’s Disease
ALFA
ikremer@leadcoalition.org
jworrell@alfa.org
#ALFA2014