Little Lobbyists: Tell Your Story
The Little Lobbyists are a group of DC-area families with medically complex kids. We visit Capitol Hill to make the voices of families like ours heard and we want to make sure your voice is heard, too. Please use the form below to share your story so we can take it with us.

Our goal, in light of the ongoing healthcare debate and proposed bills, including the AHCA, BCRA, Cassidy-Graham, and now the tax reform bill, is to bring attention to the needs of children who are medically complex and their protections currently provided by the Affordable Care Act and Medicaid. Including: 1) the ban on lifetime limits; 2) protections for people with pre-existing conditions; 3) essential health benefits; and 4) the Medicaid waiver program, which covers much of what private insurance does not.

For the past few months, we've been making a visible impact by showing up in-person so legislators and their staff can see our kids' trachs, ventilators, oxygen tanks, feeding tubes, wheelchairs, and more. But more importantly, we want people to understand that our kids are real kids; who go to school and love to play, who are funny and kind and mischievous and amazing, and who deserve access to healthcare. We also share binders filled with fact sheets and the stories of families with kids like ours from all over the country directly with their legislators. You can see some of the stories we've already shared here:

But we need your help! We would like to visit legislators on your behalf, present an information fact sheet about your child to your Senator and/or representative, and discuss how proposed healthcare changes will negatively impact kids like ours. Your story is SO IMPORTANT -- especially if you live in a "red" state (of course, we also want to thank Democratic Senators for their support, so we encourage everyone’s participation! Note: Your story doesn’t have to be about your child. If you're an extended family member or friend of the family, we want to hear from you too!).

Please feel free to contact us at with any questions. We also invite you to join our Facebook group, follow us on our Facebook page, follow us on Twitter, and check our website for news, updates, and more!

Thanks everyone!

Here's what you need to do:
1. Fill out the form below. Try to keep your answers somewhat brief, as we are trying to keep each child's profile (including a photo) to a single page; and

2. Email 1-2 photos (that you are willing for us to share) to us at;

3. Contact your Senator's office and let the staffer in charge of healthcare know to expect our visit (use the script after the form);
4. (optional) email any additional documents (letters, etc.) that you would like us to drop off to us at

Please feel free to contact us at with any questions. Thanks everyone!

Basic Information
Your name (first and last) *
Your answer
Email address *
Your answer
Phone number *
Your answer
City *
Your answer
State *
Zip code (including final four digits)!input.action *
Your answer
Child's name *
Your answer
Child's age *
Your answer
Your relationship to the child *
Your answer
Which of the following does your child utilize? (Check all that apply)
Your Story
We've provided some questions below to help you tell your story. If you don't wish to answer any of them, just leave them blank. If you'd prefer to tell your story in a different manner, leave these answers blank and paste your story under "Is there anything else you'd like us to include?"
Tell us a little bit about your child. For example, what does he or she like to do?
Your answer
Child's diagnosis/diagnoses (what you are comfortable sharing)
Your answer
Child's current medical needs
Your answer
What does access to affordable quality healthcare mean to you? (1-2 sentences)
Your answer
If you purchase insurance through the healthcare exchanges (, how will the tax bill - which could increase premiums 10% each year and make access to insurance more unstable - affect your child/family?
Your answer
How has the ACA and/or Medicaid helped your child?
Your answer
How would Medicaid cuts and/or rollback of ACA protections affect your child?
Your answer
Is there anything else you'd like us to include?
Your answer
Sharing and permissions
Are you willing for us to share your story and/or your child's photo with news media? *
We are using Twitter (@LittleLobbyists) to bring attention to this issue. We're posting little bits about how real families would be affected by this bill. Are you willing to let us share your story (including child's first name, state, and photo) on Twitter? *
Would you be willing for us to share your child's story (including first name, state, and photo) on our website? ( *
Would you be willing for us to share your child's story (including first name, state, and photo) on Facebook? ( *
Have you emailed one or two photos to us at *
In the near future, we will be starting to put out a newsletter with updates. Would you like us to add you to our distribution list?
We are often looking for families willing to share their stories publicly at press conferences, rallies, and other public events. Would you be interested in speaking opportunities if such an event should occur in your area?
Keep Sharing!
Please also share your story with your local news media and reach out to your local legislators. If you need help figuring out how to do that, don't hesitate to ask!

This link contains a list of all the healthcare staffers for Republican senators:

Sample script to use when calling your senators:
Hi, I'm [NAME], I am from [CITY/ZIP CODE]. I am calling because my child is/has [BRIEF STATEMENT OF MEDICAL STATUS/NEEDS] and access to affordable quality healthcare is very important to us. My friends live in the DC area, and I would like to make an appointment for 10-15 minutes to discuss healthcare issues. They will also drop off a letter and some information on my behalf. I would greatly appreciate it if you could meet with them and hear my concerns. Thank you so much for your time.

Thank you!!
Thank you for your help! Please join our Facebook group (Little Lobbyists), Facebook page, follow us on Twitter (@LittleLobbyists), and/or check our website ( for updates.
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