“Thanks for the Email, Senator — But Let’s Talk About My Daughter”
For weeks now, I’ve been using this blog to speak out about the so-called “Big Beautiful Bill” — a massive piece of legislation being pushed by Trump and his enablers that claims to fix the economy and save the country. And maybe to someone in a yacht or private jet, it feels beautiful. But for folks like me — moms raising disabled kids, caregivers living paycheck to paycheck, people who depend on Medicaid to survive — it’s terrifying.
I’ve been writing about how this bill threatens to gut Medicaid, slash funding for waiver programs, and leave people like my daughter Abby — who is nonverbal, G-tube fed, wheelchair-bound, and absolutely magical — without the care she needs to live with dignity.
So imagine my surprise when I opened my email and saw this glowing message from Missouri Senator Eric Schmitt, head cheerleader for this mess of a bill.
The Email
He starts off by telling me he proudly voted to advance Trump’s “America First agenda,” and then lists off all the wonderful things the Big Beautiful Bill will supposedly do: cut taxes, create jobs, secure the border, fund deportations, protect families, fund education, and oh yeah — help the disabled.
Here’s a sample of what he wrote (summarized and paraphrased — but trust me, th
is was the vibe):
“This bill will prevent the largest tax hike in American history, and also support home and community-based services. It will expand ABLE accounts, increase the cap on 529 education plans, and make the 20% pass-through deduction for small businesses permanent. It also includes provisions to help people with disabilities, including cutting waiting lists and expanding services.”
Wow, right? If I didn’t know better, I might think this was the disability rights bill of the century
But Here’s the Thing, Senator…
OK Senator, that all sounds fine and good — but let me ask you this:
You say the bill expands community-based services and cuts waitlists… but you’re also voting to gut the very Medicaid structure that funds those services.
You say it makes permanent the good parts of ABLE accounts — but you’re giving states the power to opt out of waivers entirely. If Missouri decides Abby’s care is too expensive under your block grant model, she could lose everything.
You talk about protecting families. My family is the one you’re putting at risk.
I’m the one who gets up at 3am to turn Abby to the recovery position during the hell that is a Grand Mal seizure. I'm giving meds through and changing G-tubes. I’m the one coordinating therapies, fighting with DME companies, and chasing down every bit of care that helps keep her out of a hospital or institution. And the reason we’ve made it this far? Is Medicaid.
That’s what your bill quietly dismantles — while dressing it up in language like “flexibility” and “local control.”
If you’re going to sell this to Missourians like it’s some feel-good win for the disabled, then you should be ready to answer this:
Are you prepared to guarantee that my daughter Abby won’t lose her waiver services when your block grant hits Missouri?
Can you promise that her aides will still be paid, that her wheelchair won’t be delayed for a year, that her mom (me) will still be able to care for her without losing income?
Because that’s what we stand to lose — and that’s what you’re not saying.
This email was full of buzzwords and photo ops. But what I need is accountability — not propaganda. My daughter is made from my heart and my soul and I will not have her be fodder for bullshit and propaganda.
I’ll keep speaking out. I’ll keep asking the hard questions. And I’ll keep reminding anyone who will listen that no amount of flag-waving and tax-cutting makes up for abandoning the people who need you most.
Abby’s life isn’t a political pawn. And I won’t let anyone sell us out quietly.
Not even with a “beautiful” bill.
Terri-Aka Whackamama
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