Medicaid has no excess funds to 'save.' Families like mine need the support
Years ago, we walked into an orphanage in Eastern Europe where children with disabilities were tied to cribs, left with no hope of a future because the society they were born into did not provide the support they needed to survive, let alone thrive.
We walked out of that orphanage with our remarkable, chromosomally-enhanced son. But we also walked out knowing that thousands of other children remained behind, trapped in a system that had already given up on them. This is the devastating reality of a society without supports for families with children with disabilities.
My 11-year-old daughter, Niyah, has Down syndrome, autism and is a stroke survivor. Medicaid is what allows her to access essential therapies that help her learn to communicate, navigate her environment and develop skills that bring her greater independence. It helps cover in-home support, which makes it possible for our family to function. I can be not only her caregiver but also her mother.
These services don't just improve her quality of life. They shape her future.
Yet, right now, these life-changing supports are at risk. The U.S. House of Representatives' latest budget proposal includes deep cuts to Medicaid, threatening the very foundation that keeps families like mine afloat. Politicians often frame Medicaid as an overextended program that needs trimming. What they fail to grasp is that there are no excess funds to "save." Every dollar in Medicaid is already stretched to meet urgent needs.
And still, the need outweighs the funding. My 12-year-old son, Carter, also has Down syndrome, but unlike his sister, he doesn't receive or qualify for Medicaid services in Texas. He has been on the Medicaid waiver waitlist since 2016. His number on the list is 56,034.
In Texas, this isn't unusual. Families routinely wait decades for services, leaving many without the support they need to thrive. The reality is stark: There is no safety net. Families are either lucky enough to get in or left scrambling.
Prior to 1977, more than 80% of individuals with intellectual disabilities were institutionalized. Today, that number is less than 8%. This shift happened because we, as a nation, made a commitment to community-based care, to keeping families together, and to supporting individuals with disabilities in living meaningful lives. We cannot afford to go backward.
The conversation about Medicaid isn't just about budgets and numbers. It's about real people. When children with disabilities can't access the care they need, families struggle, and the burden doesn't just disappear. It shifts to an already strained system.
States that fail to invest in Medicaid ultimately pay the price elsewhere, whether through overwhelmed emergency rooms, overburdened foster care systems, the moral and financial cost of increased institutionalization or parents forced out of the workforce to provide care themselves.
Too often, policymakers champion the idea of protecting life before birth, yet fail to extend that same commitment once children are here —especially when they have disabilities. Ensuring access to Medicaid is a direct way to uphold the value of life beyond birth.
I often think back to that orphanage, walking out with our incredible son and the heaviness of leaving behind countless children. The difference between those children and mine isn't just love; it's support. And when we talk about cuts to Medicaid, what we're really talking about is whether families like mine can stay together, whether children with disabilities can have a future, and whether we, as a society, will choose to invest in that future or turn away.
So, the question remains: Are people with disabilities worth it? If we truly believe in the value of every life, then the answer must be yes.
Carly Durham is a nurse practitioner, disability advocate and mother of two children with disabilities. She lives with her family in Richmond, Texas.
This article originally appeared on Austin American-Statesman: Medicaid is essential for disabled children. Don't cut it | Opinion
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