a preparation guide for your trip to washington, d.c

A Preparation Guide for your trip to Washington, D.C.

Congenital Heart Legislative Conference 2018

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What’s Inside Introduction ........................................................................................................................................................................................ 3

Congenital Heart Legislative Conference Schedule ............................................................................................................ 4

Accommodations & Travel Information .................................................................................................................................. 5

Tips for Successful Legislative Meetings ................................................................................................................................. 7

Pre-Meeting Preparation .......................................................................................................................................................... 7

On-Site Preparation .................................................................................................................................................................... 8

During your Meeting .................................................................................................................................................................. 8

Meeting Follow-Up ...................................................................................................................................................................... 9

Political Decorum Policy ............................................................................................................................................................. 10

Current Policy Priorities ............................................................................................................................................................. 11

Share Your Story Activity ............................................................................................................................................................ 12

CHD Advocacy Day – Story Worksheet ............................................................................................................................ 13

Creating a Personalized Leave Behind .................................................................................................................................. 14

Capitol Complex Map ................................................................................................................................................................... 15

Special Needs Form ...................................................................................................................................................................... 16

Sample Visit Report Form .......................................................................................................................................................... 17

Notes ................................................................................................................................................................................................... 18


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Introduction

Thank you for your willingness to participate in Congenital Heart Legislative Conference 2018. This year’s event is a collaborative effort of the Adult Congenital Heart Association (ACHA), The Children’s Heart Foundation (CHF) and the Pediatric Congenital Heart Association (PCHA). But the most important team member is you! Sharing your story with your legislators is a powerful way to bring about change. As you prepare to join us in Washington D.C., we hope you find this packet helpful. Whether this is your first time participating or your fifth, please read through all of this information carefully. You will find information that will help you select a hotel, determine what to pack, and prepare your story. We will also be hosting an interactive webinar in February to review the issues we will be discussing on Capitol Hill and allow you to ask questions in preparation for the Conference. A huge thank you to the hundreds of congenital heart patients, families and medical professionals from around the country who continue to make their voices heard on behalf of congenital heart disease, the CHD researchers and clinicians who provide input to guide our efforts, and the many advocacy experts who shine the light on our path. Thank you for your work to improve and prolong the lives of those living with CHD. Together, we are making a difference.

Mark Roeder President and CEO Adult Congenital Heart Association

Tamara Thomas President The Children’s Heart Foundation

David Kasnic Executive Director Pediatric Congenital Heart Association


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Congenital Heart Legislative Conference

Liaison Capitol Hill Hotel, Washington D.C. February 26-27, 2018

Schedule of Events

Monday, February 26th 9:30am – 10:30am Registration Liaison Capitol Hill

Breakfast is on your own

9:30am – 10:30am Coffee for Those Who Have Lost Loved Ones Liaison Capitol Hill

10:30am – 11:00am Welcome and Introductions Liaison Capitol Hill

11:00am – 11:45am Patient Advocacy Keynotes Liaison Capitol Hill 11:45am – 12:30pm Lunch, Meet & Greet Liaison Capitol Hill

Lunch will be provided

12:30pm – 1:15pm Policy Session: The Climate and the Need Liaison Capitol Hill 1:15pm – 2:15pm Briefing – Delivering the “Ask” Liaison Capitol Hill 2:15pm – 2:30pm Break 2:30pm – 4:00pm Breakout Sessions Liaison Capitol Hill 4:00pm – 4:30pm Team Coordinating, Role Playing, Instructions Liaison Capitol Hill 5:45pm – 9:00pm Reception and Dinner Liaison Capitol Hill Tuesday, February 27th 7:00am – 8:00am Buffet Breakfast Liaison Capitol Hill 8:00am – 9:00am Welcome & Advocacy Day Kickoff Liaison Capitol Hill 9:00am – 4:30pm Congressional Meetings Capitol Complex

Your legislative visits will be scheduled for you. The Liaison is walking distance to Capitol Hill. A hospitality room will be available at the Liaison to rest throughout the day. Lunch is on your own.

4:30pm - 6:00pm Wrap-up Liaison Capitol Hill

Not necessary to attend if you have travel plans that would interfere


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Accommodations & Travel Information

Liaison Capitol Hill 415 New Jersey Avenue, NW Washington, D.C., USA, 20001 Tel: 202-638-1616 Located in the shadow of the Capitol Building, The Liaison is close to all the historic landmarks and attractions Washington, D.C. has to offer. Here, bigwigs rub elbows and museum goers rejoice. Have a monumental time. All conference activities, except for the Congressional meetings, will take place at the Liaison Hotel. For those who wish to stay on-site, rooms are available at the Liaison Capitol Hill at a special reduced rate of $219/night, plus tax. You must make your reservations by Tuesday, January 23, 2018 for this rate. Your conference registration does not automatically book a hotel room for the conference. Reservations: To book your room, please call 1-888-513-7445 and reference the 2018 Congenital Heart Legislative Conference. The reduced room rate is only available until January 23, so please book your room soon to take advantage of the discounted rate. Please note that each individual will be responsible for his/her own room, tax and incidental charges incurred at the Hotel. Payment/Deposit/Guarantee Procedure: Each individual will be responsible for his/her own room, tax and incidental charges incurred at the Hotel. Parking Information: Valet parking with in and out service is available at the hotel for a daily fee of $49.56, self-parking without in and out service is $48 per day. Parking is also available at the nearby public lot at Union Station for $24 per day. Additional Hotel Options: Liaison Capitol Hill is located just blocks from Union Station, a hub for Amtrak and Metro. Attendees are welcome to stay elsewhere if they prefer. There are several chain hotels located one Metro stop north on the Red Line that potentially offer lower room rates. However, please note that it is imperative that all attendees be at the Liaison for mandatory training by 8am on Tuesday morning. Meals: Most meals with the exception of lunch on Tuesday while on Capitol Hill will be provided throughout the duration of the conference. On Monday, lunch will be provided during the conference with an opening dinner reception, following the conclusion of the day’s program. Tuesday will begin with a working breakfast and lunch will be on your own.


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Getting There and Away: From Ronald Reagan Washington National Airport (DCA): Take George Washington Pkwy. Exit on I-395 N. to Washington. Follow signs to I-395 N./U.S. Capitol. Take the exit for US Senate/D Street/I-395 N. Stay in right lane through two tunnels. In the second tunnel, pass the US Capitol exit to D St. Turn right at the light at the end of the tunnel onto D St. Go to 2nd traffic light and turn left onto New Jersey Ave. Liaison Capitol Hill is on the right. Total distance: 4.6 miles. From Dulles International Airport (IAD): Follow signs to Washington D.C. on Dulles Toll/Access Rd. Follow center lane (no toll) to I-66 E. to Washington. Cross Roosevelt Bridge. Follow signs to Constitution Ave. toward U.S. Capitol. Proceed 2.5 miles. Turn left onto Louisiana Ave., NW. Travel to 3rd light. Turn left on New Jersey Ave. Liaison Capitol Hill is on the right. Total distance: 27.6 miles.

From Baltimore/Washington International Airport (BWI): Exit airport on I-195 W. Merge onto MD-295 S. via exit 2B toward Washington. Merge onto New York Ave NE/US-50 to Washington. Stay on New York Ave. for four miles. Make a left onto N. Capital Street, proceed for one mile. Make a right onto E St., proceed for one block. Make a left onto New Jersey Ave. Our downtown Washington DC area hotel is on the left. Total distance: 31.7 miles.

From Points North: Take I-95 S. to exit 22B (Balt-Wash Pkwy S.). Exit on Rt 50 W. toward Washington, then exit on New York Ave. Stay on New York Ave for four miles. Make a left onto N. Capital St., proceed for one mile. Make a right onto E Street, proceed for one block. Make a left onto New Jersey Ave. The hotel is on the left.

From Points South: Take I-95 N. to I-395 toward Washington. As you go over the Potomac River, stay in middle lanes. At the end of the bridge, veer right and continue following signs for I-395 N. Proceed for one mile, then take the exit for US Senate/D Street/I-395 N. Stay in right lane through two tunnels. In the second tunnel, pass the US Capitol exit to D St. Turn right at the light at the end of the tunnel onto D St. Go to 2nd traffic light and turn left onto New Jersey Ave. The hotel is on the right.

From Points West: Take I-66 E. or Route 50 to Washington to the Theodore Roosevelt Bridge. Exit onto Constitution Avenue. Follow Constitution Ave. to the US Capitol. A few blocks before the Capitol, make a left onto Louisiana Ave, proceed for two blocks. Make a left onto New Jersey Avenue. The hotel is one block down on the right.

From Northwest (I-270): Take I-270 S. toward Washington. Keep right to take I-270 Spur S. to I-495 S. in the direction of Washington/Northern VA. I-270 Spur becomes I-495. Take exit 43 to the George Washington Memorial Pkwy to Washington. Follow the GW Parkway until it merges with I-395 N. to Washington. In the second tunnel, take the US Capitol exit to D St. Turn right at the light at the end of the tunnel onto D St. Go to 2nd traffic light and turn left onto New Jersey Ave. Our downtown DC area hotel is on the right.


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Tips for Successful Legislative Meetings

Meeting with your legislators is a powerful advocacy opportunity. It can be intimidating, but most people find it is very exhilarating. Preparation is the key to a successful visit. Please review the following guidelines to help you plan and complete your visit. If at any time you have questions, please contact ACHA at [email protected], CHF at [email protected] or PCHA at [email protected].

Pre-Meeting Preparation Become acquainted with what you will be asking for: In this packet you will find information to help you become acquainted with the Congenital Heart Futures Reauthorization Act (CHFRA), funding for CHD programs in the federal government, and the Congenital Heart Caucus. Practice telling your story: Meetings on Capitol Hill are generally short. With only 2-3 minutes to tell your story, followed by a couple of minutes to share your “ask,” it is important to be brief. Your message should have three key parts:

• Introduction – Let your legislators know that you live in their state or district and are their constituent.

• Your Story – What is your CHD story? Why are CHD research, surveillance and awareness important?

• The Ask – Make sure you ask your legislator to do something. We will be providing detailed information about our “asks” for the conference in the coming weeks.

Tips for telling your story:

• Be clear - use plain words and avoid medical jargon. • Speak from the heart and talk about your experience. • Be accurate, honest and persuasive. • Avoid relying on statistics. • Be polite, patient and grateful. • Practice, practice, practice. Tell your story to others and notice their reactions. After each

practice, edit what you liked, and what you didn't like. Learn more about your Senators and Representatives: You will be provided with relevant information about your legislators during the Legislative Conference. However, it is helpful to familiarize yourself with your members’ priorities and views by visiting their websites, which you can find via www.senate.gov and www.house.gov. Their websites will have information about their priorities and committee memberships, which may help you anticipate their response to your requests. Be prepared to meet with your member’s legislative assistant: Your legislator may not be able to attend the meeting, so you may meet with staff. Staff may be young, but they are instrumental in shaping the legislator’s views. It is not unusual for the legislator to defer to his/her staff for an opinion on your issue. It is important to demonstrate respect to everyone you encounter during your visit. Bring contact information: A business card from work, or a 2 x 3.5-inch card you print yourself should contain your name, address and email information to facilitate follow-up. Consider creating a personalized card to leave with the staff to make an even bigger impact.

mailto:[email protected]


http://www.senate.gov/

http://www.house.gov/


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Plan to dress appropriately: Dress for the conference is business casual. The reception is “Come as you are” with people wearing anything from jeans to cocktail dresses. We ask our advocates to wear clean and appropriate professional attire (suits, dress pants; shirts with ties; dresses; skirts and blouses; etc.) on Tuesday for your meetings with lawmakers. No jeans, sandals, flip flops or printed tee shirts. Comfortable shoes are permissible as there is a significant amount of walking. If you desire to wear heels, we advise you to bring a second pair of comfortable flats to wear between meetings. The average high temperature in Washington, DC in February is 47 degrees; the average low temperature is 33 degrees, and rain and snow showers are common. Please dress prepared for the typical weather. Bring an umbrella. Use your judgment when considering bringing a child: Children and young adults can be powerful voices and it is important that they learn to advocate for themselves. However, we urge parents to take into consideration that meetings can also be challenging for children. The environment demands good behavior for active children for a long period of time, since you are likely to have multiple meetings in several buildings throughout the day. The information discussed is sensitive for some children who do not yet understand the lifelong consequences of CHD. We ask that parents be prepared to excuse themselves from any meetings where their child may not be able to cooperate.

On-Site Preparation Training will take place over two days: On the first day, you will learn more about the legislative process, our current priorities and how to participate in an effective meeting. On the second day you will receive your visit schedule and group assignments. All Legislative Conference participants will be meeting with legislators in groups. There will be time allocated to get acquainted and practice telling your story with your group. Review your meeting schedule and locations: We will schedule all appointments for you. Due to frequent changes in legislators’ schedules, you will not be provided with your visit schedule until the day of our visits. You can expect about 15 to 20 minutes of time with the legislator and/or his or her staff for your visit. Please allow sufficient time between visits to find your way to each office. Familiarize yourself with where you are going: The Liaison Capitol Hill Hotel is within walking distance of the Capitol Complex. We will not be providing transportation to and from The Hill. There will be security checkpoints with metal detectors as you enter each building that will take time to get through. Note that the legislative office buildings can be confusing so please allow sufficient time between visits to find your way to each office. Promptness is critical. Each lawmaker and staff member has multiple appointments on any given day, and time is precious. We will provide you with a map of Capitol Hill, so you can plan out your routes. You should also anticipate that when you get to the office, the location for your meeting can range from a cramped conference room or noisy hallway to the Member’s personal office space.

During your Meeting Visit as a group: We are expecting over 175 advocates; however, there may only be one or two advocates in any district. You will not be attending your legislative visits alone. You will be in a group of approximately 2-4 advocates, grouped with members of nearby states if necessary. One group member must take notes and report back the details of each meeting. Make sure you assign this task in your group before you are at the visit!


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Introduction: Everyone should introduce him or herself but the person who lives in the Member’s district or state should go first in introductions and sharing his or her story. Be sure to identify yourself as a constituent and briefly explain your requests in case time runs short. Cover the priority issue: Now is the time you’ve been waiting for. Tell your story, and explain why the CHFRA bill and National Institutes of Health (NIH) funding for research and Centers for Disease Control and Prevention (CDC) data collection is important to you. Make your remarks brief and to the point. Encourage them to learn more and do more. Avoid focusing on the medical details of defects, surgeries, and/or health problems. Your story is more powerful and memorable when you keep it simple focusing on feelings rather than numbers. Stay on topic: Be careful: A little chit-chat is acceptable, but be sure to stay on topic and not be drawn into storytelling—time can pass quickly! Be sure to tie your story back to the priority issue. DO NOT discuss other political issues outside of CHD. Establish a connection: Does the legislator have a personal connection to CHD? Has he or she been helpful to the CHD community in the past? Be sure to thank them for any past support. Deliver your “ask:” Ask them for their support or to take action regarding the priority issues. If they agree, be sure to thank them and tell them that more information is available in the packet you will leave them. If there is disagreement, never argue with your legislator or their staff. Listen carefully for their reasoning. Be sure to record their response, either way, to help with our follow-up. Let them know you will contact them again, via email, to follow-up on this request, asking what a reasonable time frame is. Leave behind issue pages: Be sure to leave a folder and your contact information or personalized leave behind. We will provide you with packets the morning of your visits. You can also offer to send electronic versions of the issue pages, which provides you with a great opportunity to follow-up and email them. Request a Picture: Please thank the legislator and/or staffer for their time, and request to have your picture taken with them. If a staff camera is used, you may be asked to leave your contact information with him/her. You can also snap a shot with your mobile device. Be sure to tag your legislator or their staff member, ACHA, CHF and PCHA using social media!

Meeting Follow-Up Complete a visit report form: Advocacy teams must complete one form for each visit as soon as possible after the meeting. A digital form will be available to complete on your mobile device. These forms allow us to follow up on the concerns or requests for information from particular offices and identify potential champions for our issues. We also welcome any additional comments or anecdotes from your meeting. Follow-up notes: Advocacy is all about developing relationships. Continue the conversation with your lawmaker or staff. We encourage you to send thank you email to your members upon completion of your visit. A simple “thank you for your time” will work; however, including a personal story from the meeting and reiterating your asks is even better!


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Political Decorum Policy

Being on Capitol Hill is likely to remind you of everything that you love and hate about the political environment in Washington. Please remember that our Legislative Conference group will include people of all political persuasions and you are likely to meet with Members and staff from both parties. This can be a wonderful opportunity to meet and learn from people who see the world differently than you do. Please remember the following during your Legislative Conference experience:

• Don’t assume that others share your political views.

• Be respectful when talking about all political leaders. Your political villain is likely to be someone else’s political hero.

• Stay focused on congenital heart issues. This is why we are here and what we all agree on. Divisive

conversations will take away from our ability to forge a unified message on CHD needs.

YOU ARE STRONGLY DISCOURAGED FROM RAISING ISSUES UNRELATED TO CHD IN YOUR MEETING(S) WITH YOUR LAWMAKER(S)

You may not discuss issues such as the past elections; health care reform; the wars; the economy; the budget; immigration; unemployment; stem cell research; abortion; etc. Remarks should focus exclusively on the needs and challenges of the congenital heart community, and the need for more research and health surveillance in CHD, as called for by the Congenital Heart Futures Reauthorization Act and the Congressional Congenital Heart Caucus.


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Current Policy Priorities

A policy is a proposed course or principle of action that helps solve a problem. There are many gaps in the world of congenital heart disease that require attention. During this year’s legislative conference we will focus on a few select issues:

• The Congenital Heart Futures Reauthorization Act (CHFRA); • Congenital heart disease data collection, public health research, and awareness activities at the

Centers for Disease Control and Prevention (CDC); • Congenital Heart Disease research at the National Institutes of Health (NIH); and • Building congenital heart disease champions on Capitol Hill

Work on these policy items began several years ago and led to the passage of the Congenital Heart Futures Act in 2010. In the current political climate, the status of these issues changes almost daily. As we approach the Legislative Conference we will provide more information about these priorities.


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Share Your Story Activity

Many of us have been through a lot in our journey with congenital heart disease. We have often heard, “I could write a book.” Unfortunately, in the world of advocacy, you don’t have time to share a book with your lawmakers. In fact, you often only have 30 seconds. Whether writing an email, making a phone call, doing an interview or meeting your legislator face-to-face, your story is the most powerful tool you have. It is important to develop this story to have maximum impact. When with your lawmakers, you will begin with a quick “30-second speech.” In some cases, this will be all the opportunity that you have. Other times, your Member will follow-up with questions and additional comments. It may be helpful to write down the other things you think are important in case you have the opportunity to share. Your “30-second speech” should contain 3 components:

• Introduction: State your name, where you are from, your relationship to congenital heart disease, any relationship you may have with your member (if appropriate).

• Key Message: Share the very brief, 2-3 sentence version of your story. Describe the relevant issue

and why it is important to you.

• Request: What you want them to do. In our case it is to support funding for CHD research and surveillance at the CDC and NIH.

See if you can identify the introduction, key message and request in these stories: “Hi, my name is Amy Basken from Prairie du Sac, WI, and my son was born with a congenital heart defect. Upon learning this, the joy of holding my newborn quickly turned to fear for his life. By the time he was 3 days old, Nicholas experienced stays in 3 hospitals, med-flight, and open heart surgery. Although he is now a vibrant 10 year old, his future is still uncertain due to the significant lack of adequate data. By funding the CDC’s Surveillance program you will be able to provide insight and hope for the more than 2 million Americans with congenital heart defects.” “My name is Paula Miller and I am from Memphis, TN. I was born with a complex heart defect, Tetralogy of Fallot. I had open heart surgery twice as a child, and I grew up fraught with anxiety and fear. I had never met anyone else who understood my congenital heart defect until 1999, at the age of 48, when I first met other adults who were like me in an online chat room. This chat room was the beginning of my involvement with and dedication to helping those adults with CHDs. Throughout the last 16 years, I have worked tirelessly with volunteers and colleagues to raise awareness, find those lost to care, and empower those living with congenital heart disease to be an advocate for their own health. I am encouraging my legislators to join the Congenital Heart Caucus to build Legislative Champions within Congress to help the over 2 million adults living with congenital heart disease.” On the next page is a story worksheet. It offers more tips on how to tell your story and a place for you to write your own 30-second story. Feel free to share your story in advance with our advocacy staff for feedback. Questions? Please contact ACHA at [email protected], CHF at [email protected] or PCHA at [email protected].





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CHD Advocacy Day – Story Worksheet Please write your own draft “30-second story” to explain why CHD research and health surveillance matters to you. If you would like feedback, you can submit your story via email to:

• ACHA at [email protected] • CHF at [email protected] • PCHA at [email protected],

Please write “Story” in the subject line. You can attach the form below, or just send your story in an email. In order to ensure a response, your story must be received by 2/14/18. Here are some tips for developing your story:

• Keep it short – 30 seconds. Time your story to make sure it is not too long. • Be clear - use plain words and avoid medical jargon. • Speak from the heart and talk about your experience. • Be accurate, honest and persuasive. • Avoid relying on statistics. • Be polite, respectful, patient and grateful. • Practice, practice, practice. Tell your story to others and notice their reactions. After each practice,

edit what you liked, and what you didn't like. My Story- Name: Introduction: Key Message: Request: Other things that you think are important and just can’t fit in: Remember, this does not have to be your final version. You have more time to practice at the Legislative Conference.





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Creating a Personalized Leave Behind

When visiting your legislators, it is important to leave something behind to help them remember your visit and to provide them with your contact information, should they have any questions. We will provide you with folders that will include factsheets about our issues. But it is equally important to leave something that will help them remember you. Often times we recommend a business card. But, former hill staffer and CHD advocate Meredith Atkinson advises something a little more personal: “Hill staffers are inundated daily with endless amounts of paper and email full of information. Many of the staffers we visit are young, straight out of college types, and don't have personal experience with kids, let alone kids with heart disease. Visuals are always helpful, and I want them to see what a kid having heart surgery looks like—but, I also don't want to scare them. So, we decided to make two-sided cards, one with a sweet photo and short message on the front and a more graphic photo and details on the back. We've changed the cards and pictures up over our years, but they are more or less the same. “ Making it personal:

• Some advocates make their cards by hand using photographs and craft supplies. Others use photo greeting card templates and have them printed.

• Keep the messaging simple: o Limit it to one statistic – we suggest using that CHD is the most common category of birth

defects o Include our current issue(s), for example, “Support improved research funding”

• Make enough. You will need to have at least three cards, one for each of your members of Congress. However, we suggest creating as many as 10-15 to distribute to other folks that you may meet along the way.


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Capitol Complex Map


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Special Needs Form

If you did not complete this information at the time of registration or have additional concerns, please complete this form and return via e-mail this information by Friday, February 9, 2018 to:

• Adult Congenital Heart Association at [email protected]; • Pediatric Congenital Heart Association at [email protected]; • The Children’s Heart Foundation at [email protected]

Name: ______________________________________________________________________________ E-mail address: ____________________________________________________________________________________ □ Walking more than (circle one) ¼ ½ 1 2 4 Other: ____ block(s) is difficult for me/my family. □ I/my family member use(s) a: □ Wheelchair □ Scooter □ Other: If so, are you/they bringing it? (circle one) Yes No □ I/my family member use(s) supplemental O2: □ At night □ At all times □ As needed If so, are you/they bringing it? (circle one) Yes No □ I/we have the following special dietary needs: □ Other special needs: Comments:





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Sample Visit Report Form

1. Name of Senator/Representative: _____________________________________

Name and email of Congressional aide: ______________________________________________ Did you meet with Senator/Representative (check here) _____ and/or Staff (check here) _____?

2. Was this individual familiar with CHD? Yes No 3. How likely is the office to co-sponsor the Congenital Heart Futures Reauthorization Act?

Definitely not! Unlikely I don’t know Likely Definitely yes!

4. Will the office support appropriations for the CHD programs at CDC and research at NIH?


5. How likely is it that the office will join the Congenital Heart Caucus?


6. Did the office request any follow-up information or is there anything else of note from the meeting?

7. Name and e-mail address (or phone number) of person submitting this report:


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Notes

a preparation guide for your trip to washington, d.c

Documents