“Mommy…Can we talk about something?”
Haley looks up at me with those big brown beautiful eyes. Sienna is in bed already. If this is important, I can handle it.
“Sure. What’s up, kid?”
She clears her throat. “What will happen when…Sienna is a grownup? Who will she live with? Will it be me when you and Dad are gone?”
I handled this discussion with as much honesty and transparency as possible. Haley has a right to know all of this, because it will impact her future. The reason it came up this particular day was because Jason and I were going out of town. She felt better when I laid it all out.
Had she asked me this question one year ago, my tone would have been more confident in our plans for the future. With those plans now uncertain, due to the current political climate of this country, I reassured her as much as I could.
Sometimes it’s easy to forget that the majority of the outside world doesn’t understand what government programs do to support individuals with disabilities. It is far removed from most of your day to day lives. With that in mind, I decided to paint a picture of what could potentially happen to Sienna’s future in the aftermath of a government implosion.
Imagine this.
You’re 27 years old.
You have Down syndrome.
You aged out of school at 21. There was no transition plan, no job training, no speech or OT carried over—because your school district lost the funding it needed to fulfill your IEP. Your family kept you in the city so you had a chance at living independently. That funding went into school choice and vouchers took off. You watched your friends all go to private schools that would not accept you.
They said inclusion was too expensive.
The Department of Education let it happen.
You went to a segregated public school—because it was your only choice. School choice gave you no choices. Your Mom filed complaints with the Office of Civil Rights but most of their offices had closed and they never got to her complaints. The state tried but with the loss of funding in both Education and Medicaid, they had to prioritize those with the most needs. Public schools collapsed, and what was left was a school with only students with disabilities and not nearly enough staff to help them.
Private schools didn’t want you.
Charter schools couldn’t support you, but you never even had the chance because you never won a magic lottery seat anyway.
So they tucked you away in a program with low expectations and no path forward. Your Mom educated you at home and did the best she could.
You were supposed to get help from Medicaid after you graduated—job coaching, a part-time aide, maybe even a waiver slot so you could live semi-independently with supports.
But Medicaid?
It’s gone—or cut so deeply it only covers emergency care.
Mom had always said the Office of Vocational Rehab (OVR) would be a support you could count on, but they lost significant funding. Now they only help individuals that need around the clock care.
Your options were limited.
No habilitation. No personal care. No day program. No respite for your parents, who are now aging. No independence in spite of how capable you are. Mom knows how much you like to work and help others. You saw yourself working for a library some day because you love books so much but libraries lost funding and many closed.
All the DEI initiatives were abandoned, so in spite of wanting to work, no one will hire you.
The ACL—Administration for Community Living—used to protect your right to live in the community, not in an institution.
That’s gone too.
Funding was slashed.
The waiting lists for supported living? Years long.
There’s talk of reopening institutions. For people like you.
And now, something terrifying is happening.
You notice you’re forgetting more. Struggling with your words. Getting confused.
There’s a medication that could help—but you’re not allowed to take it.
Why?
Because the drug trials didn’t include people with Down syndrome.
The studies that were meant to explore Alzheimer’s in your population were defunded. Deemed “unnecessary.”
Too niche. Too expensive. Not worth the investment.
Your country decided your cognitive decline was acceptable.
You’re watching your mom and dad grow tired. You see your sister starting a family of her own. And you love her more than anything—but deep down, you’re scared.
You’re scared you’ll become her responsibility. A burden.
NOT BECAUSE YOU ARE, but because the system made it that way.
Because the programs that gave you a future were gutted.
Because this country never really believed in investing in you to begin with.
And that is what Sienna’s future could look like, if we don’t act fast.
So, maybe this will help you understand why I am so angry, so scared, and so very worried about my family’s future. Every night, this nightmare plays out in my head in spite of trying very hard not to let anxiety win.
Before this, our plans involved sticking with the city school district, because of the level of services they receive when transitions begin. We live in an area with a ton of group homes. It has many public transportation options. It’s a liveable city. Pennsylvania is a great state for individuals with disabilities. Our plans were solid, but now, not so much.
This isn’t just a bleak future—it’s a political choice.
And before you tell me there’s no legislation right now—let me stop you.
That’s how this works.
It’s not one bill.
It’s not a big announcement.
It’s budget reconciliation.
A sneaky, powerful tool that allows the party in power to gut programs without needing 60 Senate votes.
They can defund Medicaid, the Department of Education, and the ACL quietly—without ever having to say the words out loud.
This is exactly what they’ll do. How do I know that? I have read the play book.
They’ll blame the debt.
They’ll blame fraud.
They’ll say it’s “bloated government” and “woke programs.”
But what they’re really cutting—are the supports that let disabled people live full lives, grow old with dignity, and stay connected to the people they love.
If you have a child with a disability, ask yourself:
What happens when they grow up in a country where no one believes they’re worth the investment?
That’s the future we’re racing toward.
It’s not hypothetical.
It’s not dramatic.
It’s already happening.
And we have to fight like hell to stop it.
How? Comment below with “FIGHT” and I will dm you info.
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