This summer, ACHA will continue to focus on our Activist grassroots advocacy campaign to encourage all ACHA Activists to schedule meetings from August 12 – 28 with your Members of Congress while they’re home on break. Our goal is for ACHA Activists to hold 300 meetings across the country to introduce Members of Congress and their staff to CHD-related issues and discuss the need for people with CHD to have access to comprehensive insurance that covers care and services by ACHD specialists. It is especially important that we share this message now, as Congress considers how to respond to a lawsuit that threatens access to insurance for people with pre-existing conditions.
The good news is that ACHA is going to provide all of the tips, tricks and resources you need to schedule and hold successful meetings! We will share an advocacy toolkit, sample meeting request and instructions for how to schedule the meeting, and handouts and talking points to help you tell your story and will hold a webinar to answer any questions you may have. Check out some of this information below! We’re also going to hold special phone, email and social media events so that you can participate in our efforts from your home.
Our Advocacy message is threefold:
- First, to share basic “CHD 101” with your Representatives and/or their staff.
- Second, to explain the need for our population to have access to affordable specialized lifelong care and health insurance adequate to that need, along with protections for pre-existing conditions.
- And third, we are thanking both House and Senate Members for the passage of the Congenital Heart Futures Reauthorizations Act of 2017 (CHFRA), which became law in 2018.
Please click here so that we can provide you with information specific to your Members of Congress prior to meeting with them.
We hope that you will join ACHA Activists from across the country in advocating for the adult CHD community. The goal of ACHA’s advocacy program is to support the organization’s mission: to improve and extend the lives of the millions born with heart defects. We can only accomplish this with your help!
If you have any additional questions, please contact Danielle M. Hile at firstname.lastname@example.org.
Tips for a successful meeting
Meeting with your legislators for the first time, or even your fourth time, can be an intimidating experience. It is important to be adequately prepared to ensure that your meeting is a successful one. Register for the event below, and then review the following, which are a list of pointers to help you not only to plan your visit, but to make sure you follow-up as well.
How to contact your legislator to set up the meeting
Office locations and who to contact:
- Click here
- Find your Senators
- Your Senators home offices may be on the next screen or you may need to click “contact” to find their home (not DC) office(s)
House of Representatives Members
- Click here
- Type in your zip code in the top right
- Then type in your full address to see your House member
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 Act, which was passed at the end of 2018, its funding and the new Congenital Heart Caucus.
Practice telling your story. The “Share Your Story ” document will help you develop an effective story. We encourage you to practice telling your story in advance to increase confidence for your meetings.
Learn more about your Senators and Representatives. It is extremely helpful to familiarize yourself with your members’ priorities and views by visiting their websites at www.senate.gov or www.house.gov. Visit the CHD Caucus page to see if they have already joined the Congressional Congenital Heart Caucus . Feel free to contact ACHA at email@example.com if you have any specific questions about your legislators.
Be prepared to meet with your legislator’s legislative assistant. Your legislator may not attend the meeting. 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. Request to have your picture taken with your legislator and leave a copy of your contact information with him/her. Your contact information will also be helpful if follow-up is desired.
Plan to dress appropriately. We ask our delegates to wear clean and appropriate professional attire (suits, dress pants; shirts with ties; dresses; skirts and blouses; etc.) for your meetings with lawmakers. No jeans, sandals, flip flops or printed tee shirts.
Use your judgment when considering bringing a child. The annual Legislative Conference in Washington D.C. may not be a place for children, however, you may want to bring a child to an in-district meeting. Children can be a powerful voice to our congressional leaders, but we wish to keep their wellbeing our top priority. The Legislative Conference schedule is a demanding one, even for adults. Our first day is typically be spent in training, waiting and in formal congressional meetings. The information discussed about CHD may not be age-appropriate and could lead to fear and confusion. For this reason, meeting participants must be over the age of 13. In-district visits are often shorter, and a child who can cooperate in a business meeting setting may benefit from the experience.
Things you should do before and after the meeting/phone call
- Dress nicely
- Be gracious when arriving and leaving
- Identify yourself and your issue.
- Be concise and stay on topic
- State your purpose
- Refer to legislation- whether you favor or oppose the bill
- State your concern
- Think about how this effects your local community.
- State the facts
- Respect their time
- Ask if they support your view
- Remember to give them information in a leave behind (will be available to be downloaded on the ACHA website)
- Collect business cards for all participants to send thank you emails
- Use social media before and after your meeting Try to connect on social media before your meeting. Use social media to communicate with elected officials and their staff member on issues you care about. This is also a great opportunity to say “hello” and “thank you”
The things you shouldn’t do before and after a meeting/phone call
- Try to cover too many issues
- Deviate from the concerted message about CHD
- Argue, even if you disagree with what they are saying/proposing
- Suggest a controversial topic
- Blame them for anything because of their party affiliation
- Forget to say thank you and send a follow up email
Visiting as a group. Whether visiting in-district, or in Washington D.C., as an advocate, there is often comfort in numbers. If you are visiting as a group, assign a “leader” to the group. This person typically has experience with legislative visits or has participated in additional Lobby Day training. The leader should start and conclude the meeting. 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!
The constituents are most important. The legislators’ primary concern is whether you can elect him or her into office. If you live in the district you are important. The spokesperson should begin the meeting by identifying himself/herself as a constituent and introducing all participants, indicating your relationship to the issue (i.e., patient, family member, doctor, etc.) and briefly identify your request early in case time runs short.
Cover the priority issue. Now is the time you’ve been waiting for. Tell your story, thank your Members of Congress for their support in passing the Congenital Heart Futures Reauthorization act and explain why NIH funding for research and 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 and accessible. Remember to tie your story back to the request/ask — the need for more research to improve and prolong lives and prevent CHD, and more information to help us understand and address the needs of those living with CHD.
Stay on topic. Be careful: a little chit-chat is acceptable, but be sure to stay on topic and not be drawn into storytelling—you’ll never know where the time went! Be concise and stick to the issue at hand, but do not rush the conversation.
Solicit the legislator’s (or staff member’s) views on this issue. Review your request and do some research on your legislator. Thank your Members of Congress for their support in passing the Congenital Heart Futures Reauthorization act. Have they joined The Caucus (House only)? Support is support, regardless of the reasons. If they support the funding make sure to thank them appropriately and encourage them to take action as outlined in the material you will leave with them. If there is disagreement, never argue with your legislator or their staff. Listen to his/her perspective and then present your views. You will enhance your effectiveness if you can demonstrate a willingness to participate in a friendly exchange of ideas. Record the response of your legislator to facilitate follow-up.
Conclude your meeting. Make sure your legislator and/or staff has a copy of the briefing folder with your primary contact information. Thank them for their time and offer to be a resource to them on CHD issues.
Complete a Visit Report Form. Please complete one form for each visit. Please complete the form as soon after the visit as possible. These forms allow us to follow up on the concerns or requests for information from particular offices and identify “friends” on our issues.
Follow-up notes. Advocacy is all about developing relationships. Continue the conversation with your lawmaker. Each participant is asked to send a thank you note to their members/staff upon completion of their visit. A simple “thank you for your time” will work, however including a personal anecdote from the meeting is even better! Your thank you should be written via email as it is an instant reminder of your visit, and mail sent through to a legislative office is often quite slow.
Remember to continue the relationship.