…And it’s the most powerful tool we have!
Caregivers of medically complex children know what it means to fight. We fight for services, for medical supplies, for nursing support, for accessible education, and for policies that allow our children to receive care at home. Every aspect of our lives requires advocacy, persistence, and resilience.
Everything we have today for our medically complex children—the right to in-home nursing, access to special education, Medicaid waivers, disability protections, and life-saving medical advancements—exists because of the disability community who fought before us. They showed up, they made their voices heard, and they refused to let decision-makers ignore the needs of our children.
But right now, many caregivers are feeling a deeper sense of fear and anxiety. Proposed policy changes could threaten the very foundation of care that allows our children to thrive at home. Cuts to Medicaid, restrictions on federal grants for health research, changes to tariffs on medical supplies, and the elimination of key government agencies could leave families scrambling for resources, forcing some children into hospitals and institutions.
But here’s the truth: we are not powerless.
Now, it’s our turn to fight!
We cannot stay silent. We must act now to protect our children, our rights, and our ability to provide the care they need. Contacting our state and local representatives is one of the most effective ways to make our voices heard.
The most effective tool we have is calling our representatives.
Lawmakers are more likely to listen to a real, personal phone call than an email or petition. If enough caregivers call, we send a powerful message: these issues matter, and they directly affect our families.
Making a call may feel intimidating, but it’s easier than you think. Each call takes just 3-5 minutes, and you can be done in 10-20 minutes total. You don’t need to be an expert, you just need to share how these issues impact your family.
Find Your Representatives Here:
- Visit Find Your State Representative to look up your state and local representatives.
- Visit Find Your Members to look up your congressional representatives.
Below, we’ve provided a simple script that you can use to make your calls. We believe these issues are human rights issues that impact the health, safety, and well-being of families, regardless of political affiliation. Every child deserves access to the care and resources they need to thrive, and it’s important for lawmakers to hear directly from the families affected by these decisions.
This script may not cover everything, but it’s a starting point – a spark to help you shape your own talking points based on what matters most to you and your family. Every caregiver’s experience is unique, and your personal story is powerful. Whether you follow the script exactly or adapt it to highlight specific concerns, the most important thing is that you make your voice heard. Lawmakers need to understand how these issues impact real families, and your perspective can help shape the decisions that affect our children’s futures.
Call or Email Script for Contacting Your Representatives:
Hello, my name is [Your Name], and I am a constituent of [City, State]. As a parent and full-time caregiver of a medically fragile, technology-dependent child with complex health conditions and disabilities, I am reaching out to express my deep concern over several proposed policies that could have devastating consequences for my family and many others like mine.
- Medicaid Cuts – These cuts would eliminate critical services and nursing support for my children. Without in-home care, I would be forced into unemployment, and my children would face unnecessary hospitalizations, putting their lives at risk and increasing overall healthcare costs.
- Freezing Federal Grants & Health Research Funding – These grants drive advancements in life-saving treatments and assistive technology for disabled individuals. Cutting them would stall progress in improving quality of life and medical outcomes for children like mine.
- Shutting Down the Department of Education & DOJ Civil Rights Division – This would dismantle protections ensuring access to education for disabled students. My children, and millions of others, would be left without the supports guaranteed by IDEA and ADA, making education inaccessible.
- Increased Tariffs on Canada & Mexico – Many critical medical supplies for medically complex children, such as feeding tube supplies and ventilator components, are not manufactured in the U.S. These tariffs could make them unaffordable or unavailable, jeopardizing lives. There must be exemptions for medications and medical supplies to ensure families like mine continue to have access to essential healthcare.
- Concerns About Data Privacy & Governance – Policies that allow private individuals or corporations to access sensitive data about American citizens, including disabled individuals who rely on federal programs, pose significant risks. It is critical to ensure strong protections for privacy and security.
These policies could harm families like mine. I urge you to oppose these changes and to ensure exemptions on tariffs for medical supplies and medications. Caregivers are counting on your leadership to protect the rights, health, and well-being of our children. Thank you for your time.
Remember, your voice matters.
We know that making these calls can feel uncomfortable at first. It’s not always easy to put yourself out there, but this is one of the most effective ways to exercise our rights, use our voices, and advocate for the children we love so much. Every call sends a message that families like ours matter and that these issues deserve attention.
And here’s something important to remember: we don’t have to do this alone.
Think about all the times a friend or family member has said, “I wish there was something I could do to help.” Well, this is it. This is the perfect time to call in that favor. Ask your loved ones to make a call on behalf of your family. Share this post with them. Let them know that taking just 20-30 minutes to call their representatives can make a real difference.
Together, we are stronger. 🫶
Together, we can ensure that the children and families who rely on these vital supports are not forgotten. Make the call today. Share this with your community. And let’s keep fighting for the future our kids deserve.
Want to Learn More?
If you’re looking for more guidance on how to take action and want to learn more about how to save Medicaid, we highly recommend reading this article by our friends at Little Lobbyists. It provides additional insight on the importance of protecting Medicaid and practical steps you can take to advocate for your family and community.
Caregivers, our voices matter. Let’s stand together and make sure those in power hear us loud and clear. 🫶
