What You Need to Know (and Say) About Medicaid Right Now
If you’re raising a disabled or medically complex child, you probably already know this truth: Medicaid is the reason your medically fragile child is alive, and the reason your family is together.
It’s not just an insurance card. It’s the ventilator that keeps your child breathing. It’s the feeding tube that helps them grow. It’s the nurse who shows up so you can take a shower or sleep for more than two hours. It’s the therapy that helps them speak, move, connect. It’s the medication that finally worked after five others didn’t.
It’s what allows you to care for your child at home, surrounded by love, instead of in a hospital or other form of institution. It’s dignity. It’s stability. It’s survival.
As caregivers, we know all of this deep in our bones. And yet, we still find ourselves struggling to explain it to those who haven’t lived it.
Many lawmakers did listen to us. Some even carried our stories into the public record and fought hard to protect what Medicaid means to families like ours. But others ignored those stories and moved forward with deep cuts anyway, without ever acknowledging how those choices would harm our disabled and medically fragile children.
That’s why we have to keep speaking. Because when some decision-makers won’t say the words “disabled children,” we have to make sure our disabled children are still being seen and our voices are still being heard.
Not just in legislative hearings or policy forums, but in everyday conversations with our neighbors, our extended families, our social networks, and with each other. This moment calls for more than awareness. It calls for connection, clarity, and courage. And it starts with the words we choose and the stories we tell, and we hope this helps you find those words when you need them most.
Medicaid Is Not Just for People Without Insurance
That’s one of the biggest misconceptions many of us learned the moment we became caregivers. People think Medicaid is just for people with low income or that it serves as a backup for folks who don’t have other coverage. But for our kids, even when we do have private insurance, it’s rarely enough.
Private (or commercial) insurance plans don’t cover all the specialists. They limit access to out-of-network providers. They deny expensive medications, won’t touch compounded ones, and don’t come close to covering things like 24/7 in-home nursing or essential medical equipment. Some won’t even pay for the feeding pump or wheelchair your child actually needs, just the one they consider “standard.”
That’s where Medicaid comes in. It fills the gaps. In many cases, it’s the thing that makes care from home even possible. And no, it isn’t perfect. Far from it. Medicaid is a system we often have to fight. A system that desperately needs reform and improvement, but not dismantling.
Unlike private insurance, Medicaid is required by federal law to cover medically necessary services for children through a protection called EPSDT (Early and Periodic Screening, Diagnostic and Treatment). That means when a doctor prescribes something as medically necessary, Medicaid is supposed to cover it, even if private insurance has said no. But just because it’s supposed to doesn’t mean it always happens smoothly.
We still find ourselves battling for the right equipment, getting denied for compounded medications, or being offered the bare minimum instead of what’s truly right for our child. We file appeals. We make calls. We wait. We negotiate. We try again.
Because while Medicaid is often the reason our kids get the care they need, it’s still a system we have to navigate and sometimes fight with, every single day.
But at the end of the day, it still covers more than private insurance ever would. It’s the only reason many of us have access to things like home health nursing, personal support workers, specialized therapies, and life-sustaining equipment. It may not always provide the best, but without it, many of our kids would go without altogether.
That’s why it matters. That’s why we speak up. And that’s why we keep fighting not just to protect it, but to make it better.
A Small Group with Enormous Needs
Here’s something most people don’t know: medically complex kids make up only 6% of the children on Medicaid, but they account for 40% of what Medicaid spends on children’s care. And that makes sense when you think about it.
We’re not talking about the occasional ER visit. We’re talking about frequent hospital stays, multiple specialists, expensive prescriptions, mobility equipment, skilled nursing, and constant care.
These kids don’t need more because they’re a burden. They need more because their lives are more medically intense, and often more fragile. That care is what keeps them stable. That care is what keeps them here. That care is possible thanks to Medicaid.
The Waiver That Makes Home Possible
Many families of disabled and medically complex children access Medicaid through something called a Home and Community-Based Services waiver, or HCBS waiver. These programs allow our kids to qualify based on their medical needs, not our income. And more importantly, they’re what allows our kids to receive care at home instead of being sent to a hospital or long-term care facility.
That’s where in-home nurses, personal assistants, respite care, and therapy services come in. It’s what makes it possible to keep our kids with us, in our homes, with their families. But here’s the scary part that many don’t understand: these waivers are optional.
States aren’t required to offer them. They choose to. And they choose how many families can be enrolled, what services are included, how much providers are paid, and how long families have to wait. If a state is looking to save money (or responding to pressure from federal budget cuts), HCBS waivers are often the first to feel it.
Why We’re Worried Right Now
The big “beautiful” federal bill has officially passed, and while it doesn’t come right out and say, “We’re cutting care for disabled kids,” the consequences are still dangerously clear. There’s no line in the legislation that mentions eliminating HCBS waivers. No language that directly targets our families. But here’s what it does do: it slashes $1 trillion from Medicaid over the next ten years.
And when that kind of funding disappears, states are forced to make impossible choices. History has shown us exactly where they tend to cut first… optional services like Home and Community-Based Services. That means HCBS programs could be scaled back, frozen, or dismantled entirely. Reimbursement rates may drop. Waitlists may grow. Providers may walk away.
So while our kids may not be directly named in the bill, they’re still in the crosshairs.
The System Isn’t the Same Everywhere, Which Is Part of the Problem
Another thing that makes all of this hard to talk about is that Medicaid and HCBS waivers are not operated the same in every state. Every state runs its programs differently. The rules, the services, the waitlists… it’s all determined at the state level.
So when we hear about federal cuts, it can feel abstract at first. But those cuts will flow down into state budgets. And once that happens, it becomes very real, very fast.
So What Do We Do?
There’s no simple answer. The truth is, we’re in a bit of a waiting game. We will be watching to see how states respond, how funding shifts, and where the fallout will land. But here’s what we do know: We can’t afford to stay quiet.
Even in the uncertainty, we have power in our voices. And now is the time to start using them.
We caregivers have to learn how Medicaid really works so we can explain it to others. We have to help our friends, families, and neighbors understand what’s at stake. Not just for our kids, but for their communities too.
We have to connect with our local and state lawmakers. Call them. Write to them. Show up when we can. Tell them our stories. We have to share resources on social media, not just the scary headlines but the human side of all of this. And, honestly, we may need to prepare ourselves and each other for hard times. That might mean stocking up on supplies. That might mean checking in more with caregiver friends. That might mean organizing mutual support.
Because no matter what happens in Washington or our state capitals, we are the ones holding the line for our kids.
The fight isn’t over, and neither are we!
If this all feels overwhelming, you’re not alone. It’s a lot. But the truth is, we are strongest when we speak up, share what we know, and stand with each other.
Here at Caffeinated Caregivers, we’re going to keep breaking this down. We’ll keep sharing steps you can take, stories that need to be heard, and actions that matter.
Let us know if you’ve got questions or if you didn’t know some of this before. Drop a comment, send us a message, or share your own story. We’re in this together.
Thank you for all you are doing!! You guys are the best 🤍