Health Policy And Advocacy Toolkit - Families USA

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WWW.FAMILIESUSA.ORGHealth Policy andAdvocacy ToolkitAdvocacy can make a significant difference in ensuringthat everyone has access to coverage, care, and improvedhealth. You and your organization can play avital role in educating public officials about issuesimportant to health care consumers.The goal of this toolkit is to help people new to advocacy.It will give you the knowledge and tactics you need tobe an effective advocate.Your VoiceFederal PolicyState PolicyFamiliesUSA.org/advocacy-toolkitReaching Out

MakingYour Voice MatterYou can help policymakers understand the healthpolicy issues that matter to consumers.

Your VoiceUnderstanding Your Role as an AdvocateBeing an “advocate” or doing “advocacy” means that youeducate and influence people about policy topics that areimportant to you. Some of the most effective tactics fordoing so include contacting your elected representativesor other public officials.The law allows almost everyone to participate in advocacyactivities, but you may be more limited in what you cando during work hours if your organization receives specifickinds of funding.One of the first steps you should take is to determinewhich advocacy activities you are allowed to engage inwhile at work. You should then decide what additionalactivities you want to do on your own, outside of work.Rules about Advocating during Work HoursFor example, employees of a 501(c)(3) organization cantalk with elected officials about the importance of healthinsurance coverage for low-income children, families,and adults, but they cannot say publicly that they supporta specific candidate for elected office because of his/herstance on this issue. 501(c)(3) organizations must focuson the issue, not the individual candidate or official.Organizations with 501(c)(3) status are also allowedto “lobby,” in which they use their interactions withelected officials to persuade officials to adopt specificpieces of legislation. Lobbying can also include askingthe public to contact their elected officials to urgeofficials to support or oppose specific legislation.These sorts of “lobbying” activities, while allowed,cannot make up a substantial amount of the overallwork that a 501(c)(3) organization does.Many nonprofit organizations have a 501(c)(3) tax exemptstatus. Such organizations are permitted to engage inadvocacy, and their advocacy can make a significantimpact changing public policy. However, they must followcertain rules when engaging in advocacy activities.For more information on what makes an organization a“501(c)(3) tax exempt organization” and more detailedadvocacy rules, visit the Alliance for Justice’s BolderAdvocacy resources (www.afj.org/our-work/issues/bolder-advocacy).In short, 501(c)(3) organizations can and do educatepublic officials about the issues that are important to them.Those organizations, however, cannot endorse or opposespecific candidates for public office or engage in partisanactivity. “Partisan activity” means showing partiality toor bias toward a candidate, elected official, or politicalparty, including political candidates or parties, during acampaign or election cycle.501(c)(3) organizations that receive federal funding fortheir programs may have other legal limitations on whatthey can support.TIP4Rules about Advocating Outside of WorkGenerally, rules that govern 501(c)(3) organizationsdo not apply to individuals outside of work hours.When you are on your own personal time and are notrepresenting your organization, you are free to supportspecific candidates. You may also urge your electedofficials to support or oppose a specific bill or proposalwithout time restrictions.Anyone can educate public officials about the importance of health care programs andhow they touch their lives and those of the people they help.HEALTH POLICY AND ADVOCACY TOOLKIT

Your VoiceHow to Effectively Reach YourPublic OfficialsIdentify Your IssueYour first step is to decide which issues you’d like to talkabout. Are there important health care programs youor your organization believe should be maintained orstrengthened? Is there something you’d like to see changedin your state’s health care system, or nationally?Discussing your issues with coalitions, colleagues, andother health care advocates is a good way to narrow downyour topics and make sure your message is focused.Identify Your AudienceOnce you are clear on your priorities, make sure you knowwho makes the decisions that shape your issue, whetheryou are advocating on a local, state, or federal topic. Youneed to figure out whether your issue concerns a federal orstate program.For example, states make some decisions about theMedicaid program on their own, such as whether or not toexpand the program to low-income adults. For this issue,your audience is your state legislators and governor. But ifyou are concerned about federal proposals to restructureand cut the entire Medicaid program, (such as block grantsor a per capita cap system), your audience is your membersof Congress. (Read more about Medicaid issues such asexpansion and per capita caps on Families USA’s website).If you aren’t sure who makes the decisions about your issue,call one of your elected officials and ask, or reach out toFamilies USA.TIPWho represents you?Unsure of who represents you in Congress?Find your Representative and Senators onlineat www.GovTrack.us.To find out who represents you in your state,visit your state legislature’s website.Develop a Clear and Persuasive MessageRegardless of the subject you are contacting your electedrepresentatives about, it is important to have a clear andconcise message and know what action you would likethem to take.It is important to know the “why” of your message, aswell as the “what” and the “how.” Articulating the “why”allows you to convey a detailed picture and leads youraudience to become more engaged in your message.Equally important is connecting that story to your issueand conveying what you would like the public official to doabout it.For example, you might want a policy maker to opposecuts to your state Medicaid program because it is a criticalsafety net for low-income families in your community whowould otherwise be uninsured. Or you might want them tointroduce a bill that would address rising prescription drugprices because people in your community cannot affordtheir medicines.Discussing your list of potential advocacy issues with coalitions, colleagues, and otheradvocates is a good way to narrow down your topics and make sure your message is focused.HEALTH POLICY AND ADVOCACY TOOLKIT5

Your VoiceConnect Your Message to Your Audience Usinga Local Perspective or a Direct ImpactA public official is much more likely to be convincedof the importance of your cause if you connect yourmessage to a personal experience you’ve had or asituation experienced by the official’s constituents.Think about how the issue is relevant to you and to thepublic official.Personal stories that highlight real people’s experienceshelp put a face on the problems that we continue to seein the health care system. To learn how you can collectand share stories to have a greater impact, visit our StoryBank Toolkit at www.familiesusa.org/story-bank-toolkit.Be Courteous and Respectful in AllCommunicationsPublic officials and their staff often have busy schedules,and they correspond with many constituents andgroups that advocate for a wide range of policies. Youcan effectively convey your message and make sureyour voice is heard by building a relationship with yourpolicymakers and their staff.Providing clear information and engaging in a politeand respectful dialogue can help to build constructive,meaningful relationships with public officials, even in ashort period of time. Even if you and the official disagreeon an issue, you may find common ground on other issuesdown the line, and in the future, a public official may look toyou as a resource.During in-person meetings, you may want to bring writtenmaterials that the official or his or her staff can keepafter your conversation is over. This will give the officialthe opportunity to remember your issue and learn moreabout it—and it is a handy way to give the official yourcontact information.Engage Your NetworkIt’s important for your public official to know that theissue you are discussing impacts other constituents.Engaging your own networks—including your professionalconnections, coalitions and partner organizations, themedia and the public, or even your own friends and family—should be factored in as part of your strategy to engage apublic official.Broad support can be highlighted through a variety ofmeans, including sign-on letters, hosting events like ralliesor town hall meetings, and utilizing coordinated messagesfrom multiple groups.TIP6Articulating the “why” of your message allows you to convey a detailed picture andleads your audience to become more engaged in your message.HEALTH POLICY AND ADVOCACY TOOLKIT

Federal Policy101This step-by-step overview of the federal lawmakingprocess will give you a basic understanding ofhow an idea becomes a law, and where there areopportunities to get involved.

Federal PolicyFederal Law-Making ProcessesThis step-by-step overview provides a basic understanding of the process in which an idea becomes a law, the lawbecomes implemented, and the specific opportunities in which you and your organization can get involved. You canvisit www.familiesusa.org to learn about the latest health care bills in Congress and ways to get involved, or accesswww.congress.gov to track all currently active federal bills.1. Legislation can be drafted and introducedin Congress by any member of the House ofRepresentatives or the Senate.3. The bill then goes to the House or Senate floorfor debate and a vote.Members of Congress frequently get ideas forlegislation from their constituents and groups thatrepresent specific causes.This is another key time when the public can weighin with their views. Members of Congress appreciatehaving constituents’ input when a bill is being debatedand they are considering whether or not to support it.For example, constituents may contact theirrepresentative about their struggle with high out-ofpocket health care costs (like deductibles and costsharing) or lack of access to oral health care.4. If a majority of the House or Senate agreeson the bill, it is referred to the other chamber,where it usually follows the same route throughcommittee action and voting.If representatives hear about how an issue affectstheir constituents, they are more likely to look intointroducing a bill that addresses that problem.5. After a bill has been approved by both the Houseand Senate in identical form, it is sent to thePresident for his or her approval or rejection.2. Once a bill is introduced, it is referred to one ormore committees.Congressional committees evaluate and amend the billand vote on whether or not to move it forward.If a majority of committee members agree tomove a bill forward, it is sent to the full House ofRepresentatives or Senate for consideration.Committee consideration can be an important timefor constituents to weigh in. This is especially truewith committees that oversee your priority issues andcommittees your own federal elected officials serve on.See page 10 for more details on key committees.TIP8If the President signs the bill, it becomes law. If thePresident vetoes the bill, Congress can attempt tooverride the veto with a two-thirds majority vote.6. Once a law is signed by the President, it isimplemented through federal agencies.Agencies write regulations and other guidance thatdetermine the details of how a law will be put intopractice. Weighing in on these agency decision-makingprocesses after the legislative process is over is aneffective way to influence how laws impact people’slives. Learn more about working with federal agencieson page 10.Find out what legislation Congress is currently considering by searching for bills inthe Library of Congress database at Congress.gov.HEALTH POLICY AND ADVOCACY TOOLKIT

Federal PolicyHOW DOES A HEALTH CARE IDEA BECOME A LAW?These are the steps that nearly every bill takeson its journey to the President’s desk.A policy maker gets an ideafor legislation from his orher constituents or a groupthat represents a specifichealth care-related cause.A bill is introduced by amember of Congress.The bill is referredto key committees, whichhold hearings and vote tomove the bill forward.KEY COMMITTEESHouse Committee on Ways & MeansSenate Finance CommitteeHouse Committee on Energy & CommerceSenate Committee on Health, Education,Labor, & Pensions (HELP)House Committee on Education & the WorkforceThe bill is debatedby the full Houseof Representativesor Senate.The bill is voted on bythe full House or Senate, andsent to the other chamber torepeat this process.After the House andSenate both approve anidentical bill, it is sent tothe President for his orher signature or veto.

Federal PolicyWORKING WITH FEDERAL AGENCIESFederal agencies implement enacted laws, shaping how health care policies ultimately affect consumers.They also give the executive branch and its appointees a direct way to influence policies.Agencies write regulations and other guidance that determine the details of how a law will be put intopractice, and can update and change these rules years after laws are passed. While a number of agenciestouch health care issues, most topics fall under the Department of Health and Human Services (HHS),which oversees many health programs including Medicaid and Medicare through the Centers forMedicaid and Medicare Services (CMS).Advocates should take advantage of the processes these agencies must use to get public feedback onhow the laws and programs they oversee should be implemented, including public comment periods andrequests for information.Families USA tracks these opportunities and can provide guidance about how and when you can weigh in.Key Congressional CommitteesMembers of the House of Representatives and the Senateserve on committees that perform a range of functions,including writing and considering legislation, as well asoverseeing federal agencies, programs, and activities.Several key committees in the House and the Senateoversee programs related to health coverage, care,and related programs. These committees are importantbecause, in order to get a bill passed, it usually must beintroduced and passed out of one of these committeesbefore it is voted on by either the full House or Senate.Key committees in the House of Representatives thathave authority over health-related programs:»» House Committee on Ways & Means»» House Committee on Energy & Commerce»» House Committee on Education & the Workforce10Key committees in the Senate that have authority overhealth-related programs:»» Senate Finance Committee»» Senate Committee on Health, Education,Labor, & Pensions (often referred to asthe “HELP” Committee)In addition, the House and Senate each have a BudgetCommittee and an Appropriations Committee, whichoversee the federal budget and federal spending,respectively. These committees are also important,because the federal budget includes spending on healthcare programs.For more information on the scope of what thesecommittees cover and updates on current legislation,visit www.house.gov/committees/ and www.senate.gov/committees/committees home.htm.HEALTH POLICY AND ADVOCACY TOOLKIT

Federal PolicyGlossary of Legislative TermsMembers of Congress and their staffs frequently use technical vocabulary, so it’s important to know some of thecommonly used legislative terms. Knowing these terms will help you better understand and communicate withyour lawmakers.Appropriation: Money designated by Congress for aspecific purpose. For example, Congress appropriatesmuch of the budget for the Department of Health andHuman Services each year.Entitlement: An “entitlement program” is a federalprogram that provides benefits to any person who meetsthe eligibility criteria established by law. Medicare andMedicaid are examples of entitlement programs.Entitlements are a binding obligation on the part of thefederal government, and eligible recipients have legalrecourse if the government does not fulfill that obligation.Fiscal year: A fiscal year is the accounting period for thefederal government that begins on October 1 and endson September 30. State fiscal years vary; the majority runfrom July 1 through June 30.Hearing: A meeting of a committee or subcommittee totake testimony in order to gather information and opinionsHEALTH POLICY AND ADVOCACY TOOLKITon proposed legislation, to conduct an investigation, or toreview the operation or other aspects of a federal agencyor program. Hearings are generally open to the public.Mark-up: The process by which congressionalcommittees and subcommittees debate, amend, andrewrite proposed legislation.Recess: A temporary interruption of Congress’sproceedings, when members of Congress are backin their home districts meeting with constituents andparticipating in townhalls. Congress usually takes thesebreaks during holiday periods, and for a month in August.These are great times for constituents to meet with theirelected officials in their districts.Sponsor and cosponsor: A sponsor is the Representativeor Senator who introduces a piece of legislation.Representatives or Senators who formally list their names assupporters of another member’s bill are called cosponsors.11

State Policy101This guide provides an overview of statelegislatures, as well as resources you can useto engage your state government further.

State PolicyHow State Legislatures WorkEach state has a legislature that writes and passes lawsthat affect the residents of the state. These legislaturesplay the same role at the state level that Congress plays atthe federal level, and their legislative processes generallymirror one another.The powers, duties, size, and organization of legislativebodies differ from state to state. This guide provides anoverview of state legislatures, as well as resources you canuse to explore your state government further.How State Legislatures Are StructuredSimilar to Congress, 49 states have a legislature made upof an upper chamber, known as the Senate, and a lowerchamber, known as an Assembly or House of Delegates.Nebraska is the only state with a single chamber.As with the federal government, legislation starts incommittee and then goes back and forth betweenchambers before it passes.State Legislative CalendarsState legislatures generally meet between January andJune each year, with the following exceptions:Four states meet once every two years: Montana,Nevada, North Dakota, and Texas.deal with specific issues or topics. For example, a statelegislature could convene a special session to passa proposal to make changes that better support itsinsurance market.Rules and procedures for special sessions vary acrossstates. The majority of states allow the governor or thelegislature to convene a special session, but there are afew states where only the governor is allowed to call aspecial session.Because most states’ legislative sessions last only a fewmonths, many state legislators have other jobs when thelegislature is not in session. This means that legislators aremore likely to be working in their home communities andare more accessible than their federal counterparts, whomeet year-round in Washington, D.C.State Budgets and Fiscal YearsOne key activity that all state legislatures must completeis passing a budget. Unlike the federal government, statesmust pass a balanced budget each year (or, in some cases,a two-year budget for the legislative session).While the federal fiscal year runs from October 1 throughSeptember 30, state fiscal years vary. All but four stateshave a fiscal year that runs from July 1 through June 30. Theexceptions are:Five states meet year-round: Michigan, New Jersey,Ohio, Pennsylvania, and Wisconsin.Alabama and Michigan: October 1 through September 30The timeframe of sessions for the remaining statesvaries. Find out when your state legislature meets andaccess other resources (such as a bill tracker and moreinformation on the legislative process) on the website ofthe National Conference of State Legislatures (NCSL).Texas: September 1 through August 31Special sessions can also take place when statelegislatures convene outside their regular session toHEALTH POLICY AND ADVOCACY TOOLKITNew York: April 1 through March 31The NCSL website has more information on state fiscal years.If a legislature fails to pass a budget before the beginningof a new fiscal year, or if the governor vetoes the budget,lawmakers may have to extend the session or go into aspecial session to complete their budget work.13

State PolicyHow to Keep Up with LegislativeActivity in Your StateAs noted earlier, most state legislatures follow a lawmakingprocess that is similar to the one Congress follows,including committee consideration, robust debate, andthe need to be approved by a majority vote and obtain thegovernor’s signature. State legislators value constituentpublic input throughout this process.State Legislatures’ WebsitesThe best place to find detailed information on pendinglegislation is on your state legislature’s website, which canbe found through the Library of Congress. Search using keywords to find relevant legislation, or search for a particularbill to find when it was introduced, drafts that are available,and the status of the bill.Regional and Local NewspapersNews outlets based in your home city or state providesome of the most relevant information on what’s going onin your state legislature. Check your local paper’s “politics”section or website for updates on what is happening inyour state capitol.Social MediaAnother way to stay up-to-date is through socialmedia, such as Twitter or Facebook. Your statelegislature’s chambers may have their own Facebookor Twitter accounts, or you can follow individual staterepresentatives and senators. You can also look forcommon hashtags that pertain to particular issues or yourstate for real-time updates.14EmailYour governor has the power to approve or vetolegislation, and some governors have been very activein health care issues, including Medicaid expansion.Getting email blasts from, and corresponding via emailwith, your governor’s office are other important ways tokeep up with and influence policy at the state level. Findcontact information for your governor’s office through theNational Governors Association.Enlist State Agencies to Help FindSolutions to Your IssuesLike federal agencies, state agencies may be ableto address many of the health care problems thatconsumers face by improving administrative systems,writing new rules for how state laws are applied, orbetter enforcing existing rules. These “administrativerules” are written by state agencies and are importantbecause they determine the details of how state laws areimplemented, and therefore influence how laws affectconstituents’ everyday lives.Generally, once administrative rules are proposed, thepublic has an opportunity to offer comments beforethe rules are adopted by the state. The opportunity toprovide comments on proposed rules allows you toprovide insights and formal feedback on how health careprograms and policies are implemented in your state.HEALTH POLICY AND ADVOCACY TOOLKIT

State PolicyState agencies can also be an ally in your work withlegislators, especially regarding problems that theagencies recognize but do not have the legal authority tosolve. State agencies that may be especially relevant toyour work include:»» The Medicaid agency, which might be part of alarger department of health or department of socialservices.»» The insurance department, which in some states ispart of a larger department that may also deal withbanking or commerce. The insurance departmentoversees insurance companies to make sure theyare following consumer protection laws, and it takescomplaints about possible violations.»» The public health department, which may beworking on ways to keep people healthier and fill anygaps in the state’s health care system.»» If your state operates its own health insurancemarketplace (also called an exchange), the director,board, and staff of your state’s marketplace haveauthority over how people enroll in coverage and theplans that are available through the marketplace.You can arrange to meet with state agencies regardingthe concerns that you and your community have abouthealth coverage or health care. Many state agencies alsohave advisory committees you may want to participateon to provide a voice for health care consumers.Often, these advisory committees are required to haveconsumer representatives.TIPConnect with Other Key Stakeholdersin Your StateHealth care advocacy attracts a wide variety ofstakeholders. These stakeholders include consumerfocused organizations, legal aid organizations, medicalassociations, insurers, providers, hospitals, insurancebrokers, and pharmaceutical manufacturers. Generally,these groups all engage in advocacy at the state level toone degree or another.Building CoalitionsCoalitions are an effective way to work with otherstakeholders. These groups of organizations andadvocates meet with lawmakers, testify beforepolicymaking committees, provide the consumerperspective to the media, and do other work to elevateconsumer concerns. Working together, coalition partnersare able to monitor policy changes and give voice to avariety of consumer issues, which can amplify the impactof any single organization.Building a coalition takes time, but there are some waysto find ready partners quickly. For instance, there are stateaffiliates of national organizations that are often membersof advocacy coalitions. It may be useful to connectwith these affiliates so that you can pool resources foradvocacy campaigns during a legislative session.There are ways to find ready coalition partners quickly. For instance, there are stateaffiliates of national organizations that are often members of advocacy coalitions.HEALTH POLICY AND ADVOCACY TOOLKIT15

State PolicyHere are some examples of the types of organizations thatmay operate in your state that may make ready partnersfor consumer advocacy coalitions:»» Consumer advocacy coalitions already exist in manystates. These are groups of consumer advocacyorganizatons whose work focuses on providing a voicefor health care consumers in health policy debates.»» AARP has offices in all 50 states and the District ofColumbia with advocacy directors who work with theassociation’s volunteers in state capitols (see www.aarp.org/states/). Because AARP’s membershipis so large—37 million people nationwide—it canbe a valuable partner in promoting the consumerperspective during legislative debates on healthcare issues.»» Many national groups that focus on improving healthand health care for people with specific conditionsmaintain state-based chapters. These include theAmerican Cancer Society Cancer Action Network(ACS CAN), the National Alliance on Mental Illness(NAMI), the Multiple Sclerosis (MS) Society, and theAmerican Heart Association, among many others.16»» The Center on Budget and Policy Priorities workswith partners in 42 states through its State PrioritiesPartnership program (see www.statepriorities.org/).These state budget groups provide insight intobudget issues, particularly those that affect lowincome consumers, including the issue of Medicaid.»» Almost every state has an oral health coalition, andmany of these coalitions are engaged in advocacyefforts. The American Network of Oral HealthCoalitions has members from 44 states (seewww.anohc.org/).»» All states have Primary Care Associations, whichwork directly with community health centers andprovide technical assistance on important policytopics. They represent health centers at the statelevel and conduct advocacy around health-relatedissues. To find the Primary Care Association in yourstate, visit the website of the Health Resourcesand Services Administration Bureau of PrimaryHealth Care.HEALTH POLICY AND ADVOCACY TOOLKIT

Reaching Outto Public OfficialsPublic officials, particularly officials who are electedto represent a group of constituents, are interested inhearing from the public about issues that matter to them.

Reaching OutBasic TipsPublic officials, particularly officials who are electedto represent a group of constituents, are interested inhearing from the public about issues that matter to them.To most effectively reach public officials, keep thesepointers in mind:»» When contacting a public official, whether at thefederal or state level, remember to be concise,persuasive, and courteous.»» Harness the power of personal health carestories from you, your community, and thepeople you represent to support your position.These stories provide emotional resonanceand breathe life into issues in ways that othermethods—such as sharing statistics—cannot. Theyalso help demystify complex topics by illustratinghow a problem affects real people—including theconstituents of elected officials.If you hear compelling stories through your job or yourpersonal activities, you can learn how to use them in youradvocacy work. See the Families USA Story Bank Toolkit atwww.familiesusa.org/story-bank-toolkit.»» Finally, remember to relax! There’s no reason to benervous when communicating with a public official.No matter what level of government they serve in,officials are public servants who hold their officeonly because you and/or your community put themthere. Your public servants and their staff appreciatehearing from constituents about issues that matterto them. You don’t have to be a subject matterexpert to talk about an issue that matters to you!TIP18How to Communicate with aPublic OfficialThe sections that follow provide a few step-by-stepexamples of how to communicate with your state andfederal representa

Advocacy Toolkit WWW.FAMILIESUSA.ORG Advocacy can make a significant difference in ensuring that everyone has access to coverage, care, and improved health. You and your organization can play a vital role in educating public officials about issues important to health care consumers. The goal of this toolkit is to help people new to advocacy.

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Neither A. Thomas Perhacs nor Velocity Group Publishing assumes any responsibility for the use or misuse of the concepts, methods and strategies contained in this book. The reader is warned that the use of some or all of the techniques in this book may result in legal consequences, civil and/or criminal. USE OF THIS BOOK IS DONE AT YOUR OWN RISK. (Updated Version, July 2008) As you begin to .