When the System Pulls Back: How Policy Shifts Hit Families First

When Policy Becomes Personal for Our Kids

You walk into the IEP meeting already tired.

You’ve juggled work, therapy appointments, insurance calls, maybe a meltdown in the car. You’re hoping this time — this time — the school will finally add the support your child clearly needs.

But the tone has changed.

Suddenly you’re hearing:

• “We’re not sure we can offer that anymore.”

• “Our staffing is very limited right now.”

• “We need to wait and see how federal guidance plays out.”

It’s not just you. Special education attorneys and advocates are seeing the same pattern: districts and their lawyers are pushing back harder — not because kids’ needs changed, but because the federal scaffolding that used to support and enforce those needs is being stripped away.

At the same time, huge cuts to Medicaid, CHIP, SNAP, and disability income (SSI) are eroding the basics — food, housing, health care — that help families keep disabled kids regulated and safe.

This isn’t one isolated policy. It’s a cluster of decisions that all land in the same place: on children with disabilities and the parents trying to keep them afloat.

Let’s unpack what’s happening, what it means for your child, and how you can protect your family without burning out.

What’s Actually Happening at the Federal Level?

Over the past year, the Trump administration has pursued two big moves that directly hit families with disabled kids:

1. Mass layoffs of federal staff who run and enforce children’s programs

2. Deep cuts or rule changes in core safety-net programs (Medicaid, CHIP, SNAP, SSI)

The federal workforce that protects kids is being gutted

Since taking office this term, the administration has cut more than 121,000 federal workers, many of them in programs that serve children. (Source: First Focus on Children)

Within the Department of Education alone — the only Cabinet agency focused entirely on kids — staff have been cut nearly in half. The latest layoffs almost completely emptied the Office of Special Education and Rehabilitative Services (OSERS), leaving what advocates describe as a “skeleton staff.”

OSERS and its Office of Special Education Programs (OSEP) are the people who:

• Oversee $15 billion in IDEA funding

• Check that states and districts follow the law

• Step in when states or districts systematically fail disabled students

With most of that staff gone, there is effectively no functioning federal watchdog making sure states comply with IDEA in any consistent way.

And it’s not just special education:

• Office for Civil Rights (OCR) at the Department of Education is losing roughly half its staff and closing regional offices. That means fewer people to investigate discrimination and disability rights violations in schools. (Source: AP News)

• Office of Elementary and Secondary Education has lost over 100 staff, weakening oversight of Title I and programs for migrant, rural, and homeless students.

• At Health and Human Services (HHS), layoffs have hit:

  • Healthy Start’s perinatal services staff (infant mortality prevention)

  • CDC’s injury prevention and gun violence work

  • The Office on Smoking and Health (youth tobacco and vaping)

  • SAMHSA’s entire Division of Children and School Mental Health, which ran programs like Project AWARE and the Children’s Mental Health Initiative

These aren’t abstract “efficiency” cuts. They are the people who design, manage, and troubleshoot the systems our kids rely on.

When you remove that much expertise, programs don’t just get smaller — they get slower, more chaotic, and easier to ignore.

A New Tone From the Top

The shift isn’t happening in a vacuum. President Trump has repeatedly stated that he wants to fully shut down the U.S. Department of Education, calling it a “con job” and arguing that its authority should be handed over to states. In remarks to reporters, he said many agency employees “don’t work at all” and, in response to the recent mass layoffs, added that his administration is “keeping the best ones.”
(Source: Associated Press, 2025)

These comments set the tone for the sweeping reductions in force across the department — reductions that have left key offices, including special education oversight, operating with only a handful of staff. For families, it means the Department charged with protecting disabled students’ rights is now being reshaped during a moment of unprecedented need.

H.R.1, Medicaid, SNAP, and SSI: Why It Feels Harder Everywhere at Once

At the same time that enforcement is shrinking, the money and rules behind key supports for disabled kids are shifting.

Massive cuts to Medicaid, CHIP, and SNAP

The huge reconciliation bill known as H.R.1 (the “One Big Beautiful Bill”) cuts nearly $1 trillion from Medicaid and CHIP over the next decade and roughly $185 billion from food assistance programs like SNAP.

The Congressional Budget Office estimates that these cuts will push around 10 million people off health coverage, many of them children and people with disabilities. (Source: Washington Post)

For context:

• 2 in 5 children with special health care needs rely on Medicaid or CHIP

• For 1 in 3 of these kids, Medicaid is their only insurance option

Medicaid doesn’t just pay for doctor visits — it also supports:

• School-based services (OT, PT, speech, nursing)

• Behavioral health care

• Durable medical equipment

• Transportation and home modifications

Schools currently get more than $7.5 billion a year in Medicaid reimbursements for services often required under IDEA. As those dollars shrink, districts will be forced to choose between health services and everything else — and we know who usually loses that trade-off.

SNAP cuts bring this stress home: food insecurity is regulation insecurity. When families have less food support, everyone’s nervous systems run hotter — and kids’ behavior, attention, and emotional resilience take a hit.

SSI changes: 100,000 kids with disabilities in the crosshairs

On top of that, the administration has proposed a rule that would change how Supplemental Security Income (SSI) treats “in-kind support and maintenance” — basically, help from family with food or housing.

The proposed rule would:

• Remove SNAP from the list of programs that trigger an exemption to benefit cuts

• Require every household member to receive public assistance, not just one, to keep that exemption

First Focus estimates this could reduce or eliminate benefits for up to 400,000 SSI recipients, roughly 100,000 of them children.

For many disabled kids, SSI pays for:

• Therapy and copays

• Adaptive equipment

• Transportation to appointments

• Basic things like clothing and utilities

Cutting those benefits doesn’t just make life “tighter.” It forces families into impossible choices: food vs medication, rent vs therapy, gas vs sensory-friendly activities.

And when kids lose stability in health care, housing, and food at the same time that school supports are being squeezed?

It’s not a policy debate anymore. It’s dysregulation, at scale.

How This Shows Up in Your Child’s Everyday Life

To a child, these giant, abstract policy shifts don’t look like “federal workforce reductions” or “reconciliation bills.”

They look like:

• Fewer therapists at school
  Because districts can’t fill positions or are told not to backfill them, and federal oversight isn’t there to push back.

• Shorter or patchier services
  OT goes from 30 minutes weekly to “consult only.” Speech is suddenly once a month. Behavior support quietly disappears.

• More “no” in IEP meetings
  Teams may say, “We can’t provide that level of support” or “We don’t have the staff.” Legally, that’s not a valid reason — but parents are hearing it more often.

• Longer waits and narrower networks in health care
  As Medicaid and CHIP dollars shrink, clinics close or limit services, and families lose access to trusted providers.

• Increased family stress at home
  SNAP, SSI, and Medicaid cuts show up as more time on the phone with agencies, more fights with bills, more skipped therapies, more emotional exhaustion.

Put simply: The same child who’s being squeezed at school is also being squeezed at home, in the doctor’s office, and at the grocery store.

No wonder kids’ behavior, anxiety, and attention are spiraling.
No wonder parents feel like they’re “failing” even when they’re doing everything right.

This Isn’t About Bad Parents or Bad Teachers — It’s About a System in Retreat

One of the most important reframes right now:

The resistance you’re feeling isn’t because your child is asking for “too much.”
It’s because the system is trying to function with less money, fewer people, and weaker guardrails.

Teachers, therapists, and school psychologists are not the villains here. Many are just as scared and exhausted as parents. But they’re being told to:

• Do more with less

• Reduce or delay services

• “Wait and see” how federal enforcement shakes out

That pressure turns collaboration into defensiveness. It shifts IEP tables from “How do we help this child?” to “How do we protect the district?”

When our nervous systems feel threatened, we grasp for control.
Kids do it. Adults do it. Agencies do it.

The temptation is to direct all of our anger at the people right in front of us. But the real story is much bigger — and that actually gives us more options for action.

What Can Parents Do in This Landscape? (Without Burning Out)

You can’t fix federal policy by yourself. You can protect your child, strengthen your home base, and join the larger chorus pushing back.

Here are grounded, doable steps.

1. Anchor in what has not changed: your child’s legal rights

Even with OSERS gutted and federal staff reduced, IDEA, Section 504, and civil rights laws are still in force.

Your child still has the right to:

• A free, appropriate public education (FAPE)

• Evaluations within specific timelines

• Services based on assessed need, not budget

• Accommodations and supports for disability

• Prior Written Notice when the school refuses or changes something

Districts may feel bolder about testing the limits, but the underlying law hasn’t changed. That matters in negotiations, complaints, and due process — and courts do still exist.

2. Treat documentation as your nervous system’s backup

When systems are unstable, paper (or email) is your friend.

Track:

• Missed or shortened services

• Cancelled therapy sessions

• Changes in behavior or mental health when supports are removed

• Every request you make (in writing)

• Every refusal or delay (with dates)

This isn’t about preparing for a fight 24/7. It’s about protecting Future You from being told, “We’ve been providing everything,” when your lived reality says otherwise.

3. Bring backup to meetings: advocates, specialists, and lawyers

Because districts are lawyered up, parents often feel they have to “be reasonable” to be heard at all.

A special education advocate or attorney:

• Rebalances the power dynamic

• Keeps conversations grounded in law, not vibes

• Helps you stay regulated and less alone

Given the federal cuts, many advocacy organizations are actively tracking patterns and may already know how your district is responding to these shifts.

4. Strengthen your parallel support system

While we push to restore and protect public supports, a lot of families will need to build more of a parallel care network:

• Independent evaluations (neuropsych, OT, speech)

• Private therapies where possible

• Community-based services (regional centers, disability resource orgs)

• Medicaid waivers and state-level programs (where available)

• Parent coaching and support groups

None of this should be necessary. But right now, redundancy is a form of protection.

5. Protect your home as a regulation zone

We can’t control what happens in D.C., but we can shape the sensory and emotional landscape at home.

Small but powerful practices:

• Predictable routines around wake, meals, screens, and sleep

• Decompression time after school before any demands

• “Body before behavior” — movement, snacks, and connection before correction

• Co-regulation: “Let’s calm down together” instead of “Go calm down alone”

• Intentionally lower-dopamine windows (screen-free blocks) to help attention reset

When the outside world is unstable, the nervous system scans: “Where is it safe to let down my guard?”
Home doesn’t have to be perfect — just more predictable, kinder, and lower-pressure than the rest.

6. Join the policy fight at the level you can handle

You absolutely do not have to become a full-time activist. But if you have even a sliver of capacity, it matters.

A few options:

• Submit comments on proposed SSI or Medicaid rules (advocacy orgs often provide templates).

• Sign on to letters or petitions from disability groups.

• Contact your members of Congress with specific stories (“If this SSI rule passes, my child will lose…”).

• Show up to local school board or state education meetings where funding and compliance are discussed.

Remember: there are judges and lawmakers pushing back on some of these changes — for example, federal courts have temporarily blocked parts of the mass layoff plans as likely unlawful. The Washington Post

Your story gives them evidence and pressure to keep going.

Big Picture: Our Kids Aren’t the Weak Link — Our Systems Are

It’s easy to internalize this moment as a personal failure:

“If I were more organized, more disciplined, more on top of things, my kid wouldn’t be struggling so much.”

But when you zoom out, a different story appears:

• The federal workforce built to protect children’s education, health, and safety is being slashed.

• The safety nets that keep disabled kids fed, housed, and treated are being cut by hundreds of billions of dollars.

• Oversight for special education and civil rights is being hollowed out exactly when families need it most.

Your child is not “too much.”
Your requests are not “unreasonable.”
Your exhaustion is not a character flaw.

Our kids are not weaker than we were. They’re just growing up in systems that are quietly walking away from them.

And still — every time you show up to the IEP meeting, call the caseworker, refill the prescription, or create a calmer bedtime routine, you are building a counter-system: one built on regulation, dignity, and persistence.

Where We Go From Here

You can’t single-handedly rebuild the Department of Education or Medicaid.

You can do this:

• Protect your child’s rights on paper.

• Build a home that supports regulation instead of perfection.

• Join other parents in making noise when the system pulls back.

Awareness is the first reset.
You can’t discipline a system into caring — but together, we can make it much harder for it to disappear.

FAQs

Are my child’s IDEA rights still valid if OSERS is gutted?
Yes. The law hasn’t changed. What’s changed is federal capacity to monitor and enforce it. That makes local documentation, advocacy, and — when needed — legal support even more important.

Can a district legally say, “We don’t have staff, so we can’t provide that service”?
No. Staffing shortages and budget limits are not valid reasons under IDEA to deny needed services. They may explain why the district is struggling — but they don’t erase your child’s rights.

How do Medicaid and CHIP cuts affect my disabled child?
They can show up as: losing coverage; losing providers who no longer accept Medicaid; or schools cutting back on health and therapy services that used to be reimbursed by Medicaid.

What is changing with SSI for disabled children?
A proposed rule would change how “in-kind support and maintenance” is counted, potentially reducing or ending benefits for up to 400,000 SSI recipients, about 100,000 of them kids. This especially hits families where relatives help with housing or food.

If my child’s SSI is cut, what should I do?
You can appeal decisions, seek help from disability law centers or legal aid, and connect with advocacy groups that track SSI policy. They often have scripts and templates for responding to notices.

Is SNAP part of this story too?
Yes. H.R.1 cuts food assistance and adds stricter work requirements, which can push families — especially those caring for disabled kids — into food insecurity. That stress cascades into behavior, attention, and emotional regulation.

Why does it feel like everything (IEPs, doctors, benefits) got harder at the same time?
Because it did. Workforce cuts, funding cuts, and rule changes are happening across multiple agencies at once. You’re not imagining the cumulative weight.

How can I take care of myself in all of this?
You’re allowed to set limits on how many battles you fight at once. You’re allowed to ask for help. You’re allowed to do “the next right thing,” not all the things. Progress, not perfection, is what calm looks like.

⚖️ Disclaimer: This article is for informational and educational purposes only and is not legal or financial advice. For specific decisions about your child’s education, benefits, or health care, consult a qualified attorney, advocate, or professional in your state.