What Happens When Special Education Oversight Moves From Education to HHS: A Special Ed Mom’s Breakdown
The coffee spilled across the edge of the conference table halfway through our district’s special ed parent meeting last month, and by the time I’d blotted it up with a crumpled napkin, the coordinator had gotten to the question everyone was really there to ask. The Trump administration finalized the move last quarter: oversight of most federal special education funding and rules is shifting from the Department of Education to the Department of Health and Human Services. A mom at the other end of the table, whose 10-year-old has Down syndrome and needs weekly speech therapy, leaned forward. “Does that mean the school isn’t on the hook for his therapy anymore?”
I’m a mom to an 8-year-old with dyslexia and ADHD, so I’ve spent more hours in these conference rooms than I have watching TV in the last three years. I’ve fought for my son Leo’s 30 minutes of weekly occupational therapy, appealed a denied evaluation, and sat on our district’s parent advisory board for two years. So everyone turned to me, like I’d have some big answer. I didn’t, not then. I went home and spent three hours that night sorting through old IEP paperwork, cross-checking policy briefs, and texting my sister who’s a special ed teacher 45 minutes away in the next district.
For decades, special education oversight lived at the Department of Education, because special education is a right tied to public education. Federal law requires public schools to give every kid who qualifies a free appropriate public education, and the Department of Education enforces that. If a school cuts a required service that’s in your kid’s IEP, you can file a complaint with DOE, and they can pull federal funding from the district to force compliance. That structure isn’t perfect—we’ve still had to fight for what Leo is owed—but it’s tied directly to the idea that my kid has a right to an education that works for him, paid for through public education funds.
HHS’s core work is health and human services, most of their engagement with disability is through Medicaid and block grants for community services. What that means on the ground, from what we’re already seeing in our district, is that the legal obligation shifts. Instead of the school being required to provide services as part of your kid’s education, those services are more likely to be classified as health care, funded through HHS-administered Medicaid instead of federal education grants.
Leo was 6 when we first got his IEP. For six months before that, we were paying $120 a week out of pocket for OT, because our school district dragged their feet on his evaluation. That bill ate up our vacation budget for two years, and we had to skip putting a new roof on our house that year. If his OT moves to HHS Medicaid funding, that means I’ll have to check if our plan covers it, if we hit our annual cap, if our income still qualifies us for the benefit. Before, that was the school’s problem. Now it’s mine.
After that meeting, I put together a quick list of small, concrete things I did that any parent can finish in an hour this week, no fancy legal experience needed. First, pull out your kid’s current IEP, and highlight every related service that’s listed. That’s OT, speech, PT, school counseling, any behavioral support your kid gets. Those are the services most likely to see funding changes, because they’re the ones that get reclassified as health services under HHS. If you can’t find your IEP, just email your kid’s case worker and ask for a new copy—they’re required to give you one for free.
Second, call the number on the back of your Medicaid or insurance card right now, and ask what your annual coverage cap is for each of those services. Write that number down, then add up how many sessions your kid gets in a year. Last week, my friend Sarah—her son Sam has cerebral palsy and needs PT twice a week—did this and found out her Medicaid plan caps therapy at 20 visits a year. Sam uses 96. That’s 76 visits she’ll have to pay for out of pocket next year if the shift goes through. She’s already arranging a car pool and a split session with another mom in the same boat to cut costs, something she never had to think about before.
Third, email your district’s special education department and ask how to get on the list for their parent advisory council. Most districts have one, and it’s free to join. These groups get updates from the state about policy changes way before local news or even school newsletters do. Last year, when our state changed the rules for bussing for special ed students, the advisory council gave us a three-week heads up, so a bunch of us arranged carpools before the new rules hit, instead of scrambling the night before school started.
I’ve seen a lot of hot takes on this change online, from both sides. Some people say it will streamline services for kids with disabilities, because HHS has more experience with long-term support. Others say it’s the first step to dismantling federal special education protections. I don’t have much to say about the big political fight, honestly. All I care about is that Leo gets his 30 minutes of OT every week, that he keeps making progress on reading, that I don’t have to choose between paying for his therapy and paying our electric bill.
Last Saturday, Leo and I were at the playground, and he ran into the parking lot chasing a squirrel like he always does, and I was standing against the fence talking to Sarah. She said she’s putting together a list of local sliding-scale therapists, just in case. I added my name to it. It doesn’t fix anything, but it’s something we can do right now.
Last night, Leo sat at the kitchen table and stumbled through three pages of a picture book about a rescue dog, the one he’s been begging to read all by himself. When he finished the last page, he pumped his fist and yelled, “I did it!” We put a sticker on his reading chart, and I packed his lunch for school today. I still don’t know exactly what this shift will mean for Leo next school year, or for Sam, or for any of the other kids in our district. I’ve done the small, concrete things I can do to prepare. A lot is still uncertain, a lot is still out of my control. That’s just how it is, right? Most days, that’s enough: the sticker on the chart, the heads up from other parents, the IEP folder tucked in my filing cabinet with all the services highlighted.
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