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

• Encouraged staff to provide better care

• Negotiated with an insurer

• Confronted dementia myths and stigma

• Stood up to an unsupportive family member

• Persuaded a resident to be more cooperative

#ALFA2014

RULES FOR EFFECTIVE ADVOCACY

• Build a team to advocate year-round

• Focus on the relevant government decision-makers

• Be honest and candid, polite and patient, persistent and persuasive (always

have an “ask”)

• Maintain integrity and never attack other interest groups

• Opponents are not enemies so seek common cause

• Advocate for what should be achieved, not how to do it

#ALFA2014

MORE RULES FOR EFFECTIVE ADVOCACY

• Anticipate questions, admit uncertainty, follow-up with answers

• Be personal, share your story, stay “on issue” and prioritize “asks”

• Learn and relate to the interests of the government decision-maker

• Ask for (demand politely) fair treatment, not special treatment

• Insist on commitments and accountability to act on your “ask”

• At least be bi-partisan but work to be non-partisan

• 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

• Be a voice for residents and families

• Encourage more access to better care

and support

• Level the public policy playing field

• Government controls the

levers

– Funding – Service eligibility and

availability – Regulation – Protection of rights

#ALFA2014

ADVOCACY TOOLS

• Day at the Capitol/

Advocacy Day

• In-District Meeting

• Rally/Protest

• Site Visit

• Issue Briefing

• Press Conference

• Letters to the Editor

• Social Media

• Online Petition

• Letters, Calls, and Emails

• Campaign Contributions

#ALFA2014

CANDOR

• Tell the brutal truth

• No hyperbole

• Honesty, humility, perspective

• Spur transformational change

#ALFA2014

WHAT IS TRANSFORMATIONAL CHANGE?

SUCCESS IS NOT:

• Reports

• Plans

• Meetings

• Expressions of concern

• Legislation and co-sponsors

SUCCESS IS:

• Eliminating stigma

• Timely access to good care choices

• Person-centered care and engagement

• Clear, usable, equitable and affordable

regulations

#ALFA2014

AMBITION

“Start where you are. Use what you have. Do what you can.”

-Arthur Ashe

#ALFA2014

ASPIRATIONAL GOALS

• We will attain our goals

• How soon depends on us

• Metrics and milestones with necessary resources

#ALFA2014

POWER

• Collaboration, not competition

• Economics and ethics

• Voting bloc

• Action, not resignation

#ALFA2014

ADVOCATE FOR SUPPORTS & SERVICES

• Full continuum: pre-symptomatic education

through bereavement

• Stigma and awareness

• Access, affordability, quality

• Dementia-capability

• Cultural appropriateness

• Utilization

#ALFA2014

ADVOCATE FOR DEMENTIA-FRIENDLY COMMUNITIES

• Schools

• Workplaces

• Civic and faith organizations

• Public services and accommodations

#ALFA2014

ADVOCACY TARGETS

• Congress

• State Legislatures

• President and Governors

• Federal and state regulatory agencies

• Your colleagues and fellow stakeholders

#ALFA2014

COLLABORATION, NOT COMPETITION

• Dementia deserves more attention and more

resources. But the same is true for many

other issues.

• Instead of battling over scraps, find common

purpose.

• We do not have to be friends. We must be

allies.

• This is both ethical and practical.

False Dichotomies

• Care and support vs. science

• Prevention vs. treatment vs. cure

• Amyloid vs. tau

• Alzheimer’s vs. other dementias

• Dementia vs. other diseases

• Aging/health vs. other priorities

#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

#ALFA2014

MANIFEST DESTINY

• First PAC in 1944 • Congress of Industrial Organizations (CIO)

formed to raise money to re-elect FDR

• $600,000

• 2012 Election Cycle (FEC Data) • 7,311 total committees

• $2,259,100,000 in Receipts (Contributions)

• $2,198,400,000 in Disbursements (to Candidates/other Committees)

#ALFA2014

ARE ALL PACs CREATED EQUAL?

Most Common PACs:

• Corporate PACs (PfizerPAC)

• Labor PACs (AFL-CIO)

• Trade PACs (ALFAPAC)

• Independent Expenditures/Super PACs

• Leadership PACs

#ALFA2014

ARE ALL PACs CREATED EQUAL?

Separate Segregated Funds (SSF): • Corporate PACs (PfizerPAC)

• Labor PACs (AFL-CIO)

• Trade PACs (ALFAPAC)

Non-Connected PACs: • Independent Expenditures/Super

PACs

• Leadership PACs

#ALFA2014

RULES OF THE GAME

What is a Solicitation: • Straightforward request for

contributions

• Information on how to contribute

• Statements encouraging support of the

PAC. “Our goal…”

What is Not a Solicitation: • Does not encourage support of PAC

• Does not explain how to make

contribution

• Announce existence of PAC

• Explain laws applicable to PAC

• Provide statistical information about

PAC

#ALFA2014

MORE RULES OF THE GAME

Restricted Class (Trade Association) • Association executive/administrative staff

• Individual and unincorporated members

• Executives of corporate members that have signed prior approval

• 1/3 Rule for raffles, prizes, entertainment

• Monthly filing with FEC for all candidate disbursements

• Monthly filing with FEC for all donors $200 or more/year – Include name, occupation, employer, mailing address

#ALFA2014

CONTRIBUTION LIMITS

Limits 2013-2014

Candidate/Election

National Party/Year

State, District &

Local Party/Year

Any PAC/Year

Special Limits

Individual $2,600 $32,400 $10,000 Combined $5,000

None* ($123,200 before McCutcheon v. FEC)

National Party $5,000 No Limit No Limit $5,000 $45,400 per Senate Campaign

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.

• Explaining how the PAC benefits contributors

• Creating a sense of urgency

• Finding appropriate ‘thank yous’

• Defeating/overcoming the negative association of money in politics

• Finding unique events to turnout contributors

#ALFA2014

PACs AS ADVOCACY TOOL

Mural Jackson Pollock 1943

• Use strategically • Small, personal events

• Target champions of your cause

• It’s another touch

• Remember Jefferson

• If we’re not there, someone else (competitor?) will be

• Play by the rules of the game

• What are the most effective meetings? • Constituents with Members of Congress

#ALFA2014

PAC SCENARIO

• You are the PAC administrator for your SSF

• 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

• At the meeting, you ask PAC chair to explain why supporting PAC is important to

organization’s goals

• Lunch is served

• Materials announcing the meeting ask individuals to RSVP to their boss

• Boss will report to you who attended and who did not

• 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

Executive Director

Leaders Engaged on Alzheimer’s Disease

ikremer@leadcoalition.org

Justin T. Worrell

Director of Advocacy

ALFA

jworrell@alfa.org