Little Lobbyists--Advocacy for Medically Complex Kids: Your Story
In light of the ongoing healthcare debate and proposed bills, including the AHCA, BCRA, and the proposed repeal of the ACA, we are trying to bring attention to the needs of children who are medically complex and the protections for those children which exist as a result of the Affordable Care Act and Medicaid. These include 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.

A group of DC-area families with medically complex kids has been going to Capitol Hill and will continue to do so to make our voices heard. We would like to visit your Senator on your behalf – especially if you live in a red state. We’d also like to thank our Democrat Senators for their support as well so we welcome everyone’s participation.

The plan is to present an information fact sheet on your child to your Senator and discuss how proposed healthcare changes will negatively impact kids like ours. We have a binder full of these fact sheets to show that our kids are just kids … who need access to affordable quality healthcare. (Note: It doesn’t have to be your child. If you are an extended family member or friend of the family, we want to hear from you too!)

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

If you live in the DC-area, please join us! We will be going to Capitol Hill all week. We hope to make a visible impact by showing up in person and as part of a group; they can see our kids' trachs and ventilators and oxygen tanks and feeding tubes and whatnot, but more importantly, they can also see that these are real kids; kids who go to school and love to play, and are funny and kind and mischievous and amazing, and deserve access to healthcare.

Please feel free to contact us at contact@littlelobbyists.org with any questions.

Thanks everyone!

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This link contains a list of all the healthcare staffers for Republican senators: http://www.istrumpcarestilldead.com/staffers/

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.

Basic information
Your name (first and last)
Your answer
City, State, Zip +4 Code (to identify you as a constituent)
Your answer
Email (so we can contact you if necessary)
Your answer
Child's name
Your answer
Child's age
Your answer
Your relationship to the child
Your answer
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?"
About your child (e.g., What sorts of activities does he or she enjoy?, etc.)
Your answer
Child's diagnosis/diagnoses
Your answer
Child's current medical needs
Your answer
What does access to affordable quality healthcare mean to you? (1-2 sentences)
Your answer
How has the ACA and/or Medicaid helped the child?
Your answer
How would proposed changes in the healthcare bill affect you/the 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 and state) on our website? (www.littlelobbyists.org)
Have you emailed one or two photos to us at contact@littlelobbyists.org?
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