Chapter Engagement in the Legislative Process

2. Chapter Engagement in the Legislative Process PWSA (USA) Stacy Ward, Rikka Bos & Andrea Lucy

3. What we will cover:

4. U.S. Government at a glance The U.S. Constitution • The U.S. Constitution outlines the structure of America’s federal government. It also guarantees the states and people certain rights. Branches, Checks, and Balances • The first three articles of the Constitution establish three branches of government with specific powers: Executive (headed by the President), Legislative (Congress) and Judicial (Supreme Court). President – The Executive Branch • The President is responsible for implementing and enforcing the laws written by Congress. The President has the power either to sign legislation, or bills, into law or to veto bills enacted by Congress. Congress may override a veto with a two-thirds vote of Congress. Congress – The Legislative Branch • Congress is the legislative arm of our government and its job is to make laws. Congress is made up of two houses: the Senate (upper) and the House of Representatives (lower).

5. How a bill becomes a law Legislation is Introduced • Any person can introduce a piece of legislation; this is called a bill. The bill needs a member of Congress to sponsor it. The sponsor is someone who believes strongly in the bill and wants to see it turned into a law. Committee action • After being introduced, the bill is sent to a committee. Floor action • Debate • Vote Executive action • A bill becomes law if signed by the President or if the bill is overridden in Congress. The bill becomes a law • Once a bill becomes a law and is assigned an official number.

6. PWSA (USA)’s current advocacy priorities • H.R. 2507/S.2158: Newborn Screening Saves Lives Reauthorization Act of 2019 • H.R. 1530/S.595: Treat and Reduce Obesity Act (TROA) of 2019 • H.R. 5115: Rare disease Advancement, Research, and Education Act of 2018 (RARE Act of 2018) • State legislation that recognizes PWS as a qualifying eligibility diagnosis

7. I’ve written bills that became law because people called to complain about a particular issue I was unaware of Importance of Chapters in advocacy • People with disabilities continue to be vastly underrepresented in politics • Only 6 congressional seats are held by representatives with disabilities • People in Congress make better and more comprehensive decisions when a diversity of voices is included Senator Ron Wyden (OR)

8. Sending an email or physical mail • Only talk about one piece of legislation at a time • Keep it short – one page maximum • Check your Senator’s website for a contact form • Include pictures and bright colors in physical mail • Don’t send email attachments • Keep it brief, polite, and free of grammar and spelling errors

9. Put the current date The Honorable <Full Name> Send the letter to the office closest to you – it has a higher chance of being read than letters sent to the DC office Tell them who you are Provide a little background on PWS – they may have no direct experience with PWS Share you story – it doesn’t have to be heart-wrenching. Your story will personalize the issue for your Senator Include photos in the letter when possible Make your ask – what do you want them to do? Add your signature and contact info

10. The power of social media • Public way to show your support • Tag their official page • Include pictures • Make it personal • Tell them you’re a constituent • Make use of #hashtags

11. Make a call • One of the most effective ways to advocate • Phone calls require minimal time commitment and no traveling • Leave a voicemail or talk with a staff member • Only call your own elected officials • Write down what you want to say before you call • Clearly state the address at which you are registered to vote • Clearly say what want the elected official to do • Stay polite but be firm in your interaction Senator Braun calling back his constituents

12. Attend a townhall Senator Murray hosts a weekly coffee for Washington state constituents • Most Members of Congress hold “town hall” meetings several times each year to meet with constituents and give updates from Washington, D.C. • Held in a public setting and are free to attend • Make sure to have your question prepared in advance • Limit yourself to ONE question or topic • Raise your hand immediately when the Senator asks for questions • Stick around after the meeting • Bring a business card or typed letter to give to a staff member or the Senator to help them follow up • Network with other attendees

13. Schedule a meeting • In person meetings make the most impact • Ask to meet the elected official or a member of their staff in your district office • Work with your Chapter to advocate as a group – the more people present, the more amplified your message • Expect to spend 10 to 15 minutes with the elected official • Prepare a short summary on the legislation and share it • Only discuss one topic • Introduce yourselves an make a short statement about your personal story • Be clear what you are asking them to do – support the bill, sponsor the bill, vote “yes,” etc. • Stick to the issue you asked to discuss and don’t go off topic • Ask if the elected official will pose for photo with your group and if all members have given permission to be photographed • Thank them for meeting with you and for supporting the PWS community

14. Questions?