Frequently asked questions:
Q. What does complex medical needs or medically complex mean?
A. A child with complex medical needs has multiple medical issues. They require specialized medical care, which often includes medications, equipment, and/or therapies. Having a child with complex medical needs can mean multiple hospitalizations, surgeries, and emergency room visits. It also means a strict coordination and continuity of care because of the involvement of so many services. Kids with complex medical needs often have disabilities, cognitive and/or physical. We do not specifically define a set of symptoms because are many syndromes, disorders, and conditions that cause medical complexity.
Q. Are you a partisan group?
A. Little Lobbyists is a non-partisan family-led group. We focus on the issues that impact our children, and we advocate for their right to access the health care, education, and community inclusion they need to survive and thrive. We appreciate the support of any legislator from any party who supports our children. We will hold accountable any legislator from any party who votes against what our children need. However, we also firmly believe in the importance of having conversations to find common ground and shared values with those who do not yet support our children. Our vision is for the civil rights of people with complex medical needs and disabilities to have universal support.
Q. There are so many acronyms! Can you define some of the most important?
A. Here you go!
ACA: Affordable Care Act (sometimes referred to as "Obamacare"). The ACA is important because it provides protection for people with pre-existing conditions, bans annual and lifetime caps on care, expanded Medicaid in many states, and took significant steps to make sure more Americans have access to affordable health care. Learn more here.
ADA: Americans with Disabilities Act "The ADA is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 -- the ADA is an "equal opportunity" law for people with disabilities." Learn more at www.ada.gov
Medicaid and CHIP: Medicaid and the Children’s Health Insurance Program (CHIP) "provide free or low-cost health coverage to millions of Americans, including some low-income people, families and children, pregnant women, the elderly, and people with disabilities." Learn more here.
IDEA: The Individuals with Disabilities Education Act (IDEA) is the federal law that supports special education and related service programming for children and youth with disabilities. Learn more here.
Q. I still care for my child with complex medical needs, but h/she is no longer a minor. do you represent my family too?
A. Yes. We're called "Little" but the issues we advocate for are BIG. We know many of our children with disabilities will grow up to be adults with disabilities, and we welcome families caring for older children. Please share your experience advocating for your child with complex medical needs and disabilities with us, as we know there is so much we can learn from each other's journeys.
Q. How can my child and I become little lobbyists?
A. Three easy steps! 1. Share the story of your child with complex medical needs and disabilities with us through our story collection form. 2. Connect with us online through our community Facebook group to stay up to date on our activities, calls to action, and more. 3. Follow the Little Lobbyists’ guidelines whenever you identify yourself as a member of our group. Because we encourage active participation from our children, we work to maintain a family-friendly tone in all our interactions, language, and behavior. When encountering differences of opinion, please try to seek common ground and remember our goal is always to educate and tell our children's stories.
Q. Do I need to come to Washington D.C. to participate in little lobbyists?
A. No! Kids with complex medical needs and disabilities need advocates in EVERY state! We often connect families to advocacy opportunities within their home state and our long-term goal is to have Little Lobbyists chapters in every state. Contact us if you are interested in learning more!
Q. I'm going on a hill visit for the first time! What should i know?
A. For tips on talking to legislators, what to wear, transportation, security, health suites, and even where to find snacks, please see our Hill Visit FAQs.
Q. I don't have a child with complex medical needs, but I would still like to support little lobbyists. what is the best way to be involved?
A. There are lots of ways you can support Little Lobbyists! Follow us on Facebook, Twitter, and Instagram to share, like, and retweet our messages. Participate in our calls to action on the issues that impact our community. Spread the word about our organization, especially to anyone you know who has a child with complex medical needs and disabilities. And, if you can, please donate to help us grow our mission to advocate for more families. Thank you!