Happy World Down Syndrome Day!
Today, on World Down Syndrome Day, we reflect on this year’s theme: “Improve Our Support Systems.” It’s a theme that resonates deeply with the work we do at The Death Readiness Podcast—especially in our latest episode, “Who’s on Your Team? The Key Players in Special Needs Estate Planning,” released today.
In this episode, I continue my conversation with special needs planning attorney Kristen Lewis, diving into the real-world challenges families face as they plan for the future of a loved one with a disability. From navigating complex government benefits to choosing a trustworthy trustee, Kristen shares critical insights—but what stood out most is her emphasis on building a strong team of support.
Planning for a loved one with Down syndrome—or any intellectual or developmental disability—requires more than legal documents. It requires a comprehensive, compassionate, and informed support system: professionals who understand the unique needs of the individual, family members willing to step into new roles, and open conversations about the future.
As Kristen wisely references a parent’s “10-page job description” for caring for their child—and that no one person can pick that up on their own. By assembling a team that includes special needs attorneys, care managers, life care planners, benefits navigators, counselors, and more, families can prepare thoughtfully for a time when they may no longer be able to lead the charge themselves.
World Down Syndrome Day is about dignity, inclusion, and long-term support. Improving our systems—both formal and informal—starts with recognizing that care doesn’t happen in isolation. It happens through collaboration, community, and courageous conversations.
Listen to the full episode:
Let’s honor World Down Syndrome Day not just with awareness—but with action. Let’s improve the systems that support all families, today and for generations to come.
