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Advocating to Elected Officials

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These are exciting times! Medical knowledge of neuromuscular disease is broadening, and children and adults with these diseases are living longer, fuller lives. Research discoveries are leading us to promising treatments. But challenges remain, as many federal agencies are not receiving the funds and resources needed to catalyze change. And, our ever-changing neuromuscular community continues to encounter barriers to accessing necessary resources and supports. In response to rising concerns, MDA is working to accelerate research advances and treatment discovery, while expanding the resources available to those affected by neuromuscular disease so that families can lend their own voices to effect change. 

When meeting or communicating with elected officials about issues that matter to you (whether it be public policy or changes to state and/or municipal services for people with disabilities), the following tips for success can help.

 

  1. Elected officials represent YOU. As a registered voter, it is your responsibility to ensure that members of Congress understand how the issues they legislate impact their voters — and that means YOU.
  2. Know that meetings are often fast-paced and brief.
    • Be prepared to be concise in your remarks in the event that your meeting gets interrupted or cut short.
       
  3. You are an expert on YOU. That’s what matters most of all.
    • Share your personal experience. Explain how the legislation/policy in question will impact your life. Bring photos of your affected family members (if speaking about muscle disease). Anything you can do to personalize the meeting and leave a lasting impression is critical.
       
  4. Always be polite.
    • It is all about creating relationships so that your voice can be heard.
       
  5. Get your story straight.
    • Be prepared:
      • Do your research so that you are confident about what you are presenting.
      • Write notes about what you are going to say, and practice what the conversation may sound like.
    • If communicating in writing, provide your name, address, phone number and email address.
       
  6. NEVER EVER make up an answer or fabricate stories.
    • You want to be a trusted source.
    • “I don’t know” or “I will find out and get back to you” are appropriate answers.
    • Always feel free to refer the legislators office back to MDA’s Advocacy office, or offer to have someone from MDA’s Advocacy office contact them to follow up on a technical question that may arise during your meeting.
       
  7. Don’t do it alone.
    • If you need to learn more about a policy or issue, seek out information from trusted sources, including government websites and advocacy groups.
    • Elected officials and their staff members can offer important information:
      • they are intimately familiar with and unintimidated by the legislative process;
      • they have been elected to represent residents of their districts, and meeting with constituents is part of their job; and
      • they can connect you with public websites containing additional information.
         
  8. Be patient.
    • Legislative processes are complex and take time.
    • Listening to differing views on an issue provides you with perspective on all information being presented to elected officials, and can help you reinforce specifics relating to the issue for which you are advocating.
    • Don’t burn any bridges. If outcomes for the issue at hand do not coincide with what you advocated for, do not blame or insult the legislator. You may need to approach these same elected officials and their staff members on future matters.
    • Your issue is your top priority, but policymakers have to balance everyone’s priorities.
       
  9. Express gratitude.
    • Write a note or email, or make a phone call to express appreciation to elected officials who take time to hear your thoughts on an issue; it’s also good to thank any staff members who were instrumental in arranging the meeting.
    • Thank elected officials who voted to support policies that matter to you, as well as any of the official’s staff members who provided additional information to help you understand specifics about the issue in question.
 

Advocating do’s

  • Become familiar with legislative staff; they are often the legislator's eyes and ears.
  • Be professional, courteous, positive, direct, clear, concise, factual, credible and specific.
  • Always follow up with information that you have promised.
  • Be sensitive to partisan politics. Legislative issues can be complex. Sensitivity to different perspectives on an issue opens the door to compromise.
  • Type your fact sheets, letters and statement. Be sure they include contact information so you can be reached at a later date.
  • Try to establish a relationship of mutual trust with your legislator.
  • Be specific about action you need from your legislator on an issue. Attend legislative hearings, committee meetings, budget mark-up sessions and floor votes on your bill.
  • Explain to your legislator how he/she can help you and other constituents.
  • Know what other issues or problems your legislator is working on, and help him/her when you can.
  • Treat your legislator as you would like to be treated.
  • Be ready to discuss any concerns he/she might have (do your homework).
  • Schedule visits in advance by contacting the legislator’s office directly.
  • Try to combine contacts; a letter by itself is fine, but a letter and a follow-up visit are better.

Advocating don'ts

  • Don't give inaccurate information, distort facts or purposely lie.
  • Don't be rude to a legislator and/or his/her staff.
  • Don't ask the public to support or oppose candidates based on their position on one issue.
  • Don't waste a legislator's or aide's time.
  • Don't begin by saying, "as a citizen and taxpayer… "
  • Don't write members of the House when the vote is in the Senate, and vice versa (House bill numbers are always preceded by the initials H.R; Senate bill numbers are preceded by S.).
  • Don't bypass your legislator, and then contact one from another district for help with your issue.
  • Don't publicly or privately complain about your legislator or a member of his/her staff.
  • Never start or repeat rumors in communications with legislators.
  • Don't hold grudges or argue.
  • Don't cover more than one subject during a meeting or in a letter to a legislator.
  • Don't forget to give the legislator the one-page fact sheet when writing or visiting about a particular piece of legislation or issue (MDA usually has "one-pagers" available online for legislation being championed by the MDA community).
  • Don't press for an answer or commitment on your first visit.
  • Don't blame legislators for all the things that go wrong in government.
  • Don't be offended if he/she forgets your name or who you are, even if it is just five minutes after your visit.
     

References

Government

  • House of Representatives — federal government
  • Senate — federal government
  • State representatives — local government
  • Legislative glossary — helpful terms for advocates
  • Thomas (Library of Congress) — search engine to locate bills being discussed in Congress

Medical

  • Social Security — federal program that provides assistance to people with disabilities 
  • Medicare and Medicaid — help provide insurance to Americans who qualify

Advocacy agencies

  • Americans with Disabilities Act (ADA)
  • ADA Enforcement — DOJ Status Report
  • Access Board
  • Administration on Developmental Disabilities
  • Medicare Rights — provides a breakdown of the complex system, and helps to ensure that everyone gets the most out of Medicare by helping people understand the services for which they're entitled

Other Sources

Advocacy 101

Being an Effective Advocate for Your Child

Righting the ADA (Quest article)

Tips for Advocating

 

MDA's Tips for Success

  • Overview
  • Advocating to Elected Officials
  • Applying for Social Security Benefits
  • Educational Advocacy - The ABCs of IEPs and 504 Plans
  • Home Modifications
  • Preparing for the Unexpected - In Case of Emergency
  • Screening, Interviewing, & Selecting Personal Care Attendants
  • Securing Funding for Durable Medical Equipment
  • Tips for Traveling - For People Living with Neuromuscular Diseases
  • Workplace Confidence: Interview Tips & Accommodations
  • Return to Advocacy Section
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