My daughter Rachel, who has Down syndrome, was born in 1999. Rachel attended public school and participated in the general education classroom and the same activities as her friends. She graduated with a diploma in 2018. She attended a college program. She now works at the University of Kansas Health System, where she is paid like everyone else.
What if Rachel had been born in 1974? She would not have had a right to a free and appropriate public education. Schools could and did turn away students with disabilities. Legally, they did not have to take children like Rachel.
While advocating for Rachel’s inclusion and support in the public school system required effort, her right to a free and appropriate public education was guaranteed because the law said so. For now, I will refrain from my tirade about that fact that she had the right not because the law said so but because it is so. This right stems from the passage of the Individuals with Disabilities Education Act (IDEA) in 1975, which mandated that schools provide equitable education to children with disabilities. Before IDEA, schools were not obligated to educate children with disabilities, and many children were excluded entirely. I know families whose siblings missed education because they were school age before this law existed. This history is why casual discussions about “eliminating the Department of Education” are deeply concerning to many parents of children with disabilities and advocates. This law is not just about compliance; it’s about recognizing and upholding inherent rights.
What now? That said and with the election behind us, many are wondering how best to support individuals with Down syndrome and other disabilities. No matter the outcome for your chosen candidate, here are five key steps you can take to make an impact.
- Connect with Your Elected Officials
Whether you voted for them or not, connect with your U.S. Representative and U.S. Senators.* If they are newly elected, introduce yourself as a self-advocate, caregiver, friend, or ally, and express your commitment to policies that support people with Down syndrome. If you already have a relationship with them, remind them that you want to work with them in the coming session. Express your interest in working together on policies that matter to the Down syndrome community. *Find elected officials at the local, state, and federal levels here.
- Share Your Personal Story
Your personal story is truly the most powerful tool in advocacy. Elected officials often say that hearing personal stories makes the greatest impact. To help you get started, the NDSC Policy and Advocacy section of the website has resources, including a one-page story template, that you can use to communicate your story in a compelling and accessible way. Your story is invaluable—share it widely. Remember to connect your personal story to policy objectives as demonstrated in our self-advocate one-pager examples.
- Educate Yourself & Join Advocacy Networks
Understanding key issues is essential, and collective efforts amplify impact. Consider signing up for NDSC action alerts or joining the National Down Syndrome Advocacy Coalition (NDAC). NDAC holds quarterly calls where the NDSC Policy Team provides updates on important federal issues. When the new Congress begins, NDSC will publish a Congressional Agenda for the 119th Congress—a useful tool for state and local Down syndrome organizations to adapt for their own advocacy efforts. You can also find a list of advocacy organizations offering regular policy updates on the NDSC website.
- Follow Up with Elected Officials
In the coming weeks, reach out to your elected officials again, and if possible, request a meeting. Elected officials have staff in local offices, so try to schedule a meeting there. You may connect with the staffer handling disability issues. Share your one-pager and reiterate your commitment to working together on issues important to the Down syndrome community. Building respectful relationships with staff members is essential—they are your link to the official and can significantly influence decisions.
- Use Social Media Positively
Social media is a powerful way to share your story and advocate for change and preserving civil rights. Present your message positively and encourage others to join the cause. Consistently sharing updates and personal experiences helps spread awareness and builds community support.
Whether you’re celebrating or processing disappointment after the election, there’s no time to pause in our commitment to the Down syndrome community. Our mission to support and advocate is more crucial than ever. Keep sharing personal stories, building relationships with policymakers, and pushing for the changes that will empower our loved ones with Down syndrome and other disabilities. Positive, persistent advocacy can drive impactful change in the disability community, regardless of political shifts. For more resources and tips on effective advocacy, explore the NDSC website. Now is the time to stay focused on our goal and continue the work that truly matters.
