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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

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/

Press Conference

Advocacy Day

Letters to the Editor

In-District Meeting

Social Media

Rally/Protest

Online Petition

Site Visit

Letters, Calls, and Emails

Issue Briefing

Campaign Contributions

#ALFA2014


CANDOR

Tell the brutal truth

No hyperbole

Honesty, humility, perspective

Spur transformational change

#ALFA2014


WHAT IS TRANSFORMATIONAL CHANGE? SUCCESS IS NOT:

SUCCESS IS:

Reports

Eliminating stigma

Plans

Timely access to good care choices

Meetings

Person-centered care and engagement

Expressions of concern

Clear, usable, equitable and affordable

Legislation and co-sponsors

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

resources. But the same is true for many

Care and support vs. science

Prevention vs. treatment vs. cure

purpose.

Amyloid vs. tau

We do not have to be friends. We must be

Alzheimer’s vs. other dementias

Dementia vs. other diseases

Aging/health vs. other priorities

other issues. •

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

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: •

What is Not a Solicitation:

Straightforward request for

Does not encourage support of PAC

contributions

Does not explain how to make

Information on how to contribute

Statements encouraging support of the

Announce existence of PAC

PAC. “Our goal…”

Explain laws applicable to PAC

Provide statistical information about

contribution

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

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.

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 •

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? •

Mural Jackson Pollock 1943

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

Justin T. Worrell

Executive Director

Director of Advocacy

Leaders Engaged on Alzheimer’s Disease

ALFA

ikremer@leadcoalition.org

jworrell@alfa.org

#ALFA2014


2014 alfa conference across the advocacy spectrum  
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