Health ExChange Academy

Advocating for Change

Understanding How to Impact Health Policy1

A dvocating for Change

U nderstanding H

ow to Im

pact H ealth Policy

H ealth

ExCh ange A

cadem y

1

Advocating for Change | Understanding How to Impact Health Policy

Written by Harry Snyder, with assistance from Matt Iverson

Copyedited by Lisa Black Designed by Lane + Lane

Copyright © 2006 by the Center for Healthy Communities of The California Endowment. All rights reserved.

This manual was published by the Health ExChange Academy of the Center for Healthy Communities.

Special acknowledgment to The California Endowment’s Public Policy Director, Barbara Masters, for her

guidance and insight in developing the framework for Advocating for Change.

inside back cover

1 Advocating for Change | Understanding How to Impact Health Policy

Advocating for Change

Understanding How to Impact Health Policy

What is advocacy?

How is it important for your work and building the community you serve?

How is advocacy done?

Who are the players?

Foreword

The California Endowment places a strong emphasis on policy change activities,

including advocacy, with the belief that policy change is necessary to make meaningful

and lasting improvement in the health of Californians. Although no single policy or

system change will achieve the ultimate goal of a healthier California, The Endowment

firmly believes that everyone has a role to play and that all organizations can participate

in the advocacy process.

To that end, The Endowment’s Public Policy Department and the Center for Healthy

Communities have developed Advocating for Change as part of the Center’s Health

ExChange Academy. Designed to provide you with the fundamentals of advocacy and

the tools to put that knowledge into practice, Advocating for Change is the first in a

series of trainings to help staff at nonprofit organizations become more effective leaders

in improving community health.

Special thanks are due to Harry Snyder, an advocate well-known for his prior work at

Consumers Union, for writing this manual. The training program itself was developed

by Harry and the team at the National Community Development Institute: Omowale

Satterwhite, Shiree Teng and Diana Lee.

It is our hope that this manual and training will help you in your work in advocating for

improved health outcomes in California’s most underserved communities.

Sincerely,

Robert K. Ross, M.D. President and Chief Executive Officer The California Endowment

1. HeAltH Policy AdvocAcy: An intRodUction 1

2. AdvocAcy StePS to MAke cHAnge HAPPen 6

Getting the Facts—Research and Data Collection 6

Building Support—Organizing and Coalition Building 10

Making a Plan—Develop Goals and Strategies 14

Communicating Your Message— Informing the Public and Decision Makers 18

3. AdvocAcy PlAceS WHeRe deciSionS ARe MAde 28

Changing the Law 28

Working with Government Agencies 30

Working with Health Care Institutions 32

Working with Private Companies 34

Using the Ballot Box: The Initiative and Referendum Process 36

Using the Courts 37

Direct Group Action 39

4. RefeRenceS 42

5. WoRkSHeetS 57

Table of Contents

Advocating for Change | Understanding How to Impact Health Policy 1

Health Policy Advocacy An Introduction

This manual will help grantees of The California Endowment and oth- ers understand advocacy, the world of health policy advocacy, how advocacy is done, and what part each person can play. Health policy consists of the rules governing health issues, for example, requirements for culturally and linguistically appropriate health services, worker safety practices, or limits on air pollution. These rules or public poli- cies decide how a diverse population receives appropriate health care, what worker safety protections will be required, and how much pol- lution can be released into the air. Policy change is a shift in the rules that allows for new ways of doing things, such as more culturally and linguistically appropriate health services, stronger measures to prevent repetitive stress injuries, or stricter standards for release of pollutants. Advocacy is a way to change both the health policy rules and resource allocation decisions of government and private institutions.

In order to bring about better health, it is important that people who are working to improve the health of California residents know the processes for changing the policies and practices of government and private institutions. Service providers, whether they are caseworkers, public health educators or clinicians, know firsthand the roadblocks to delivering those services. They are in a strategic position to identify problems, to understand the ways that will work to solve the problems, and to engage their clients and constituents in the process. Researchers and health policy specialists also have concrete ideas about how to im- prove health. Those with hands-on experience and other expertise bring credibility, enthusiasm and commitment to the process of improving and protecting health in California. The California Endowment wants the people and organizations that are affected by and understand health problems to have the tools to solve them. Understanding health policy and health policy advocacy is the first step to gaining those tools.

Advocacy projects to improve any aspect of health can have the add- ed benefit of building the capacity of communities to move their own agendas. These projects can include low-cost housing, more and better jobs, a cleaner environment, or safer streets—all of which can contrib- ute to improving community health. Building community capacity to

“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

1

2 Advocating for Change | Understanding How to Impact Health Policy

effect change should be built into every advocacy campaign, both to strengthen the campaign and to consciously build skills for the future.

Advocacy can be done in many ways, including: seeking changes in government agency policy or practice, working with private businesses or health care institutions, changing laws, introducing ballot initiatives, taking direct group action, and, when necessary, litigation. Often, one or more of these strategies is used to bring about better health or to protect what is now working effectively. The same four steps to make change happen are used in every place where health policy decisions are made. However and wherever health advocacy work is done, you will need to complete these steps:

1. Get the facts.

2. Organize support.

3. Define the problem and make your plan.

4. Communicate a clear and compelling story of what is wrong and what should be done.

These pages explain the basic steps involved if you become part of an advocacy campaign for better health. The References section at the end of this manual provides resources for additional, in-depth guidance. These sources include information for the sustained course of action needed to remedy serious problems inherent in an advocacy campaign. Changing health policy is hard work and can take time, but it is essential for improving your community’s health. Examples of prior campaigns are used throughout the manual to demonstrate how the work is actu- ally done; they show the concrete results and improvements in health that advocacy can bring about.

Advocating for Change | Understanding How to Impact Health Policy 3

Advocacy Works on Many Levels

for some time, consumer and nutrition advo-

cates argued that Mcdonald’s and kraft foods

produced and marketed products that are con-

tributing to the growing obesity in the nation.

Advocates engaged in a variety of strategies

beginning with publicizing research data and

analysis highlighting the negative aspects of

the companies’ practices and products. law-

suits were threatened and in some cases filed.

Public protests and demonstrations were held.

new government laws and regulations were

discussed and introduced. Advocates wrote to

and met with company executives. All of these

advocacy strategies, which were carried out

in various places where decisions are made

(including administrative agencies and the

legislature), were rebuffed by the companies

and met with denials and excuses. But with

an accumulation of pressure, both Mcdonald’s

and kraft felt the need to announce their

intentions to alter their policies, reconstitute

their products, and change their marketing

practices aimed at children. each one of the

advocacy efforts contributed to changing poli-

cies at kraft and Mcdonald’s, which will lead to

better health.

HoW cAn yoU Be An AdvocAte?

The skills that already make you successful— knowing what is important to your work, working with others, planning your efforts and communi- cating what needs to happen—are the same skills used for advocacy. People and organizations pro- viding health services often work to change the rules so they can serve people more effectively or serve more people. Researchers and health policy analysts identify causes and potential solutions to save lives, reduce disease or make health care more efficient. Many people do not recognize that they are already advocates when they work to im- prove the delivery of health care or to get more money for a budget.

Each person and organization uses their own style to advocate. They use the style they are comfort- able with and that has been effective for them in their work. You don’t need to go to court or hold a demonstration to be advocating, and you don’t need to be a “health policy advocate” to advocate. Advocacy is working on behalf of others to make systems better or to protect what is now working. To be effective, advocacy involves a broad range of people with different skills and commitment of time, from academics to community activists.

It is important to understand that changing the policies of public and private institutions can help solve health-related problems. It is also important to know how those changes are influenced and what your role can be in helping to bring about improvements in health through advocacy. The California Endowment is committed to helping grantees and others in the essential work of im- proving local, state, federal, as well as corporate policies affecting health.

Health Policy Advocacy: An introduction

4 Advocating for Change | Understanding How to Impact Health Policy

Restrictions on Legislative Advocacy

lobbying has come to mean trying to convince

someone to do something, such as lobbying a

friend to go to your favorite restaurant or lob-

bying the mayor to open a health clinic in your

community.

However, the federal internal Revenue Service

defines lobbying very specifically. Although

lobbying is an important component of most

advocacy campaigns, advocacy encompasses a

much broader range of activities. Any advocacy

effort that does not meet the iRS definition is

not considered lobbying.

there are two kinds of lobbying: direct and

grassroots. direct lobbying has three elements

and is defined as

1) a communication with a legislator

2) about a specific piece of legislation

3) that expresses a view on that legislation.

grassroots lobbying is a communication with the

general public that seeks to influence them to

take action by including a specific “call to ac-

tion,” such as asking people to write their legis-

lators. the communication must also be about a

specific piece of legislation and express a view on

that legislation.

the iRS sets limits on the amount of money

that may be spent on lobbying by a 501(c)(3)

organization that has made the “501(h)

election” (see References p. 45 for Alliance for

Justice). However, it is important to understand

that these limits do not apply to non-lobbying

health advocacy such as educating an elected

official about an important health issue,

working on an administrative regulation or

organizing community support.

it is also important to understand that the iRS

regulations are not intended to prevent leg-

islative advocacy or lobbying by nonprofit or-

ganizations, although private foundations are

prohibited from lobbying or designating grant

funding for lobbying purposes. According to

the Alliance for Justice, “congress has stated

that influencing legislation is an appropriate

and legitimate activity for charitable organi-

zations. in 1976, it passed legislation giving

public charities the right to lobby up to defined

percentages of their annual expenditures.”

know the rules. for more information on how

501(c)(3) organizations can advocate and lobby

effectively, see Alliance for Justice’s Worry-

Free Lobbying for Nonprofits, which describes

how nonprofit groups can lobby within the

iRS regulations.

Advocating for Change | Understanding How to Impact Health Policy 5

An AdvocAcy teMPlAte

This Template is an overview of the two major parts of the world of health policy advocacy described in this manual: Advocacy Steps to Make Change Happen and Advocacy Places Where Decisions Are Made. The illustration Advocacy World on this page provides a way to visualize all the parts of any advocacy campaign and how they work together. The sections that follow discuss the four Advocacy Steps to Make Change Happen essential to any advocacy campaign and the Advocacy Places Where Decisions Are Made in which the steps are used. Almost every campaign to change health policy will require: 1) knowing the facts, 2) getting others involved, 3) making a plan, and 4) communicating with others about the problem and how and why it needs to be solved. These four key Advocacy Steps to Make Change Happen are necessary for any effort to change policy. This is true whether you go to court or to the legislature, or choose another Place Where Decisions Are Made for your campaign to improve health. Examining the Considerations and Pluses and Minuses described in Advocacy Places Where Decisions Are Made will help you decide which way of working is the best strategy for your campaign.

Health Policy Advocacy: An introduction

Advocacy World

SolUtionS

Steps to Make change Happen

Building Support

Communi- cating Your

Message

Making a Plan

Getting the Facts

Legislature

Government Agencies

Ballot Initiatives

Courts

Businesses & Other

Organizations

Places Where decisions Are Made

Direct Action

Health Care Institutions

6 Advocating for Change | Understanding How to Impact Health Policy

getting tHe fActS– ReSeARcH And dAtA collection

To change health care you need to be able to show there is a problem with the current situation—for example, lack of coverage or cure, lack of services, or lack of information.

Defining the problem requires getting and understanding the facts. Finding out what is wrong and analyzing why there is a problem also helps you identify potential solutions. To improve health care you will be asking the public, the media and decision makers to rely on what you say and then to take the action you recommend for solving the problem. Your credibility will be on the line and with it your ability to be effective. You must know all you possibly can about the situation you want to change, including viewpoints on all sides of the issue, in order to give a complete and accurate picture.

Getting the facts and analysis you need is usually pretty straightforward. You will probably already have much of the basic information you need, as well as the contacts and connections to obtain additional information and help. You can rely on the skills and experience you are using effec- tively now to do the additional research and fact finding. To start your work, you will need to present clear answers to the following questions.

• Who is being hurt and/or what needs to be corrected?

• How are they being hurt? How can you describe the problem? For example, is the problem lack of coverage, information, or cultur- ally appropriate care; no money for prescriptions; no transporta- tion to health care; or an unhealthy environment?

• How serious and/or widespread is the problem?

• If left unaddressed, will the problem get better or worse?

• If worse, how so?

• Why does the issue matter?

• How has the community been affected?

Advocacy Steps to Make change Happen

To change health care

you need to be able to

show there is a prob-

lem with the current

situation—for exam-

ple, lack of coverage or

cure, lack of services,

or lack of information.

2

Advocating for Change | Understanding How to Impact Health Policy 7

Advocacy Steps to Make change Happen

To design an effective campaign strategy, you should know the following:

> if the problem is long-standing, why has it not been resolved?

> What agencies or organizations are responsible?

> What laws or rules apply?

> What reasons are used to explain the situation?

> Who knows about the problem?

> Who thinks there is a problem?

> Who thinks there is no problem?

> What are the solutions?

> What are the politics of the situation?

> Who benefits?

> What actions, if any, have been taken?

> What reports or news accounts have there been?

> What has happened in other areas? Have workable solutions been found?

Getting a government agency to gather the needed facts and do other research is often the first effort in an advocacy campaign. Community groups build their case by using government data and reports to add to the information they gather from the community and other resources. The thoroughness of your presentation of the facts, including showing that people are being harmed, along with your analysis of the problem, will influence the public, the media and the way officials respond to your request for change. Being able to describe specific solutions makes your case even stronger.

Getting the Facts on Lead

in 1992, PodeR, a grassroots

group organizing families for

environmental and economic

justice in the Mission district

of San francisco, realized that

many children were suffer-

ing from lead poisoning. they

did research and found stud-

ies that showed lead-based

paints were often the cause of

lead poisoning in children and

that many homes in the Mis-

sion district were older and

contained lead-based paint.

Using this information, along

with other data and local sur-

veys, they were successful in

getting a comprehensive en-

vironmental lead Poisoning

Prevention law and program

for all of San francisco.

8 Advocating for Change | Understanding How to Impact Health Policy

Where to find the information There are dozens of information sources with answers to the previous questions.

Books, Newspapers and Periodicals Read the available literature on the problem and its history, not only to know everything you can, but also to identify those who may be helpful and those who may be part of the problem.

The Internet A search of the World Wide Web may uncover information about your problem and provide links to organizations on the same issue in other sites.

Government Reports and Documents Your efforts will gain credibility if they are supported by information from government sources. A credible campaign makes it difficult for others to deny that a problem exists. You may have to file a Freedom of Information Act (FOIA) or Public Records Act request to get the mate- rials you need (see References pp. 42 and 48).

Organizations and Individuals It is extremely important to learn the views of other organizations and individuals interested in health issues. You’ll want to confer with like- minded individuals and organizations not only to get the benefit of their experience but also to enlist their support. You should also explore the positions of potential opponents, not only to better understand their perspectives but also to help you incorporate effective arguments against their positions into your action and your media materials (see Refer- ences pp. 44 and 45).

Advocating for Change | Understanding How to Impact Health Policy 9

Advocacy Steps to Make change Happen

Academic Sources Schools of public health and other academic institutions can pro- vide a great deal of unbiased research and analysis to help you clarify a problem and identify solutions. These and other organizations are not ivory towers, but practical resources looking to help communities solve health problems. It is also possible that graduate students may be willing to assist you in finding facts and existing studies to guide you. (For a thorough list of academic institutions specializing in public health, see References p. 47.)

Data Sources There are research organizations and data sources that are intended to be helpful and accessible to community groups. They can direct you to search engines and other sources for finding information relevant to your community’s health issues. The California Health Interview Sur- vey (www.chis.ucla.edu) and the Urban Institute’s Health Policy Center (www.urban.org/content/PolicyCenters/HealthPolicy/Overview.htm) are good places to start.

➜ You can use Getting the Facts: Researching the Problem on p. 58 of the Worksheets to guide your work.

➜ Information on Getting the Facts can be found on p. 48 in References.

10

A single individual or

organization can take

action, but the likeli-

hood of success is far

greater if a coalition of

groups and individuals

join in the work.

BUilding SUPPoRt — oRgAnizing And coAlition BUilding

A single individual or organization can take action, but the likelihood of success is far greater if a coalition of groups and individuals join in the work.

organizing and coalition Building Organizing is working with individuals in the community to develop a broad-based understanding of what is wrong, what needs to be done, how to work together, and who else will be working for change, and also seeks to motivate people to join in the campaign. Coalition build- ing is the work done to get groups to work together in a campaign. Organizing and coalition building are two sides of the same coin: get- ting broad-based support for improving health.

organizing goals The purpose of organizing is to increase the number of individuals in- volved in and supporting the movement for change. You will want to educate and inspire people in the community and others concerned about health to join in and work for change. There is strength in num- bers because your problem solving will be more relevant, you will increase the capacity of your community to solve its problems, and you will strengthen the community’s political clout to bring about change in the future.

Successful coalition components As you start your work, try to include individuals and organizations that are widely recognized and respected, both within your community and by the larger public. Having a prominent person as a leader and strong organizations as members can make it easier for others to join the coalition. As you go forward with building a coalition, try to reach out to politically diverse groups to participate in a coordinated and structured effort. Remember that the broader the political representa- tion, the more powerful the effect. It is much harder to dismiss an effort that is supported by a wide range of organizations, particularly if those organizations are often not on the same side. Most groups working for better health may be willing to be part of the community effort if you recognize that different organizations can help in different ways, ways that are consistent with their individual priorities and resources.

Advocating for Change | Understanding How to Impact Health Policy

Advocating for Change | Understanding How to Impact Health Policy 11

Advocacy Steps to Make change Happen

Your coalition should include organizations and individuals who have experience with health-related issues and with the community. The success of a coalition depends on many factors:

> everyone must have the same fundamental goal, a clearly defined and agreed-upon plan, and a united position and strategy.

> All parties need a clear understanding of how the coalition will function.

• Leadership must have the time, skills, experience, resources and coalition support to do the job.

• Each coalition member’s level of participation should be well defined. (Can an organization only sign on, send a letter of support, supply resources or can it participate fully?)

• Distribution of work should be undertaken according to each member organization’s strength, resources, capacity, organizing experience, research, use of media, negotiation skills or leadership.

• There must be a commitment to full, thorough and frequent communications.

• Assigned decision-making authority should be agreed to by all members.

• A defined style for the campaign (e.g., in-your-face, diplomatic, high media visibility) and the sharing of credit are part of the plan.

• Accountability of each group for its part of the whole effort should be in place.

> All members must commit to be in for the long haul and to support everyone else’s interests until the job is done. no selling out or side deals.

> the coalition members must present a united front, with designated speaker representatives who have defined decision-making authority.

> the coalition members should regularly assess their progress and impact.

> All successes will be celebrated and acknowledged by all members.

Basic Coalition Principles

• Clear agreement on commitment to issue

• Clear agreement on policy agenda

• Clear agreement on coalition structure

• Clear agreement on roles for members

• Clear agreement on resources committed

• Tasks delegated to best-qualified people

• Clear communication, ongoing and regular

• Actively build capacity/ skills of members and groups

• Share credit, share victories, share setbacks

• Regularly review strate- gies, roles, communica- tion and other coalition operations

12 Advocating for Change | Understanding How to Impact Health Policy

Coalitions can be as formal as those with a letterhead and a separate office or as informal as an agreement to sup- port a single goal. No matter how you work, you want supporters to sign on as sponsors of the effort. But if a coalition partner does not want to join fully in the work, a letter of support or testimony at a public hearing should be welcome. Coalition members need to be con- cerned about the organizational needs and capacity of all supporters, and not assume that every group can participate in the front line of the campaign.

tensions Changing the health system is diffi- cult work and community coalitions must support a shared vision of what to do and how to do it. Your fact finding and analysis may lead you to think you know what is wrong and what needs to be done. But for effective coalition building, you may want to present the community members with the infor- mation and have them decide what they think are the problems and solu- tions. In this way, they are making key decisions and taking ownership of the campaign. It is a strategic decision that helps build a solid coalition. If there is no agreement on a solution or if com- munity members or organizations can’t agree on roles, leadership, control of resources or strategy, the work is much more difficult and less likely to succeed. Negotiating agreement on these issues may require patience and compromise.

California Coalitions Pay Off

in 1994, consumers Union objected when a nonprofit

health insurer changed into a for-profit business

enterprise. it appeared that the assets of the

nonprofit would be absorbed into the new business,

resulting in a loss of charitable dollars that could be

used to improve health in california. despite the best

efforts of consumers Union, the government approved

the change without addressing any of the group’s

concerns. in order to continue the struggle, consumers

Union reached out and helped form a coalition of

more than 90 groups from throughout california

representing seniors, children, consumers, minorities,

and low-income and faith-based communities.

the broad-based, diverse membership of the coalition was

a clear message that many people from many viewpoints

thought something was wrong and that something

needed to be done to protect the public interest.

Working together, the coalition issued reports, filed a

petition, contacted the media and elected officials, and

presented evidence at hearings and meetings. forming

the coalition and advocating together for a solution

made the public, the media and government decision

makers pay attention. the coalition accomplished

what the individual group could not. the government

changed its ruling and required that the charitable </