In this episode of Special Ed Rising: PURGE 47 Edition, Mark Ingrassia breaks down proposed federal changes to Supplemental Security Income (SSI) that could significantly impact disabled adults—especially those living with their families.

These aren’t minor adjustments. The administration is considering rule changes that could reduce or eliminate benefits for up to 400,000 individuals, shifting the financial burden directly onto families already navigating complex systems.

Drawing on nearly four decades in special education and real-world family experiences, Mark unpacks what’s changing, what it means, and why it matters.

🔍 What You’ll Learn

• How proposed SSI changes target disabled adults living at home
• Why family-provided housing may now be treated as income
• How SNAP (food assistance) changes could make accessing SSI more difficult
• The concept of “administrative burden”—and how complexity limits access to benefits
• What the system looked like before—and how these changes shift us backward
• The real-life consequences for families, including financial instability and difficult choices
• Why these policies could threaten independent living and increase reliance on institutional care

⚠️ Key Takeaway

This isn’t just about policy—it’s about predictability, stability, and whether families can plan for the future. As systems become more complex, access shrinks—even when eligibility doesn’t change.

Or as Mark puts it:

“A benefit you can’t access is not a benefit.”

🧠 Referenced Insight

Mark references reporting from ProPublica and an article by David M. Perry highlighting how even experts struggle to understand what these changes mean for their own families—underscoring the growing uncertainty.

🗣️ Call to Action

• Stay informed—even when it’s overwhelming
• Connect with advocacy groups and other families
• Ask long-term questions about your child’s future
• Share this episode with someone who needs clarity

Because the more we understand and speak up, the stronger our advocacy becomes.

🎧 Final Thought

Families are not trying to take advantage of the system—they are trying to build stable, meaningful lives for their children.

And this isn’t just policy. This is your child’s future.

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Episode 173: 🎙️ When Policy Becomes Personal: What These SSI Changes Could Mean for Our Families

I’m Mark Ingrassia—special educator, advocate, and parent coach. I’ve spent nearly forty years inside classrooms, at IEP tables, and standing shoulder to shoulder with families when the stakes weren’t theoretical—they were life-defining.

This version of the podcast is different.

Because right now, we’re not just navigating systems—we’re watching them shift in real time.

Policies are tightening. Supports are harder to access. And families are being asked to do more with less—while the margin for error keeps shrinking.

PURGE 47 is where we confront that reality head-on.

Because families need clarity, confidence, and a plan.

If you’re raising, teaching, or supporting someone with disabilities—

You’re in the right place.

Imagine doing everything right for your child. You show up to every meeting. You fight for services. You plan for adulthood. You think ahead—18, 21, beyond. And still… you don’t know if they’ll have enough to live on next year.

That’s not fear talking. That’s reality.

Because right now, there are proposed federal changes that could fundamentally reshape Supplemental Security Income—SSI—for disabled adults and the elderly. And here’s the part that should stop every parent in their tracks: the administration is trying to shrink SSI payments by changing rules that directly impact disabled adults who live with their families—not strangers, not institutions, families. These changes aren’t minor. They could slash or even eliminate benefits for up to 400,000 disabled adults living at home.

I’ve spent 38 years in special education, and I can tell you this with certainty—families already struggle to understand this system. And that’s not accidental. We’re dealing with a structure where eligibility is unclear, rules are constantly shifting, and outcomes feel unpredictable. Even experts have pointed out that when systems become more complex, fewer people successfully access what they’re entitled to. And now, instead of simplifying things, they’re layering new rules on top of that confusion.

I was reading an article by David M. Perry—“My Son Is a Disabled Adult. The Trump White House Has Him in Its Sights”—and one part really stuck with me. He talks about how even with all of his expertise, he still doesn’t know what these changes will mean for his own son. And he gives a very real example: if his son lives at home, the value of that bedroom could now be counted against him, reducing his SSI. That’s the crux of this. Families doing the right thing—providing a home—could be penalized for it.

According to ProPublica, Supplemental Security Income, which serves 7.5 million Americans who are unable to make a living because of severe disabilities or destitution in old age, has never been easy to qualify for. Fewer than a third of applicants are approved, and the process often takes years. Recipients of these benefits in turn regularly have their finances reevaluated, and are also intermittently examined by medical and vocational experts, to determine whether their payments will continue.

Current and former Social Security officials have told ProPublica over the past year that the SSI program’s complexities and absurdities remain perhaps the agency’s biggest bureaucratic headache. As ProPublica reported last summer, DOGE did nothing to address this, mostly ignoring SSI despite its obvious inefficiencies. In fact, DOGE and the White House pushed out roughly 7,000 Social Security employees, many of whom had been working on SSI reforms and backlogs.

Let’s break down what’s actually changing in a way that makes sense. First, there’s the housing rule. If your adult child lives at home, that support—just having a bedroom—can now be treated as income. And if it’s treated as income, it can reduce their SSI payment. That means families who are doing what we’ve always encouraged—providing a safe, stable home—could actually be penalized for it. Some estimates suggest that monthly benefits could drop significantly, forcing families into impossible decisions. Do you continue to support your child at home and risk losing benefits, or do you restructure your living situation just to protect financial eligibility? That’s not a policy tweak—that’s a fundamental shift in how support is viewed.

The second change involves SNAP, or food assistance. Previously, if a household qualified for SNAP, it helped demonstrate financial need. It created a level of protection, ensuring that disabled individuals could receive full SSI benefits without being penalized for living with family. Now, that connection is being weakened or removed. So a family could be struggling enough to qualify for food assistance, yet still be treated as if they are financially capable of supporting a disabled adult. That contradiction creates confusion, and more importantly, it creates risk.

Pro Publica reports: …conservative think tanks opposed the Biden SNAP policy, with some claiming that paying these low-income SSI beneficiaries less could save the federal government $20 billion over the next decade.

And then there’s the third piece—the one that ties everything together. Increased administrative burden. More paperwork. More rules. More interpretation. More opportunities to make a mistake.

But to really understand what’s happening here, you have to understand what this looked like before.

Disabled adults living with their families could receive SSI without being penalized simply for living at home. Housing support from family wasn’t heavily counted against them. Families could do what families do—provide stability—without triggering a reduction in benefits.

SNAP, or food assistance, also played a role. If a household qualified, it helped confirm financial need. It made access to SSI smoother, more predictable, more aligned with reality.

And zooming out, over the past few decades, there’s been a broader shift—one that had, at times, bipartisan support—toward independent living and community-based care. The goal was to allow disabled adults to live at home or in their communities, maintain some level of autonomy, and avoid unnecessary institutionalization.

Now, was it perfect? No. It was still complicated. Families still struggled.

But at least in principle, the system was moving in a direction that supported independence—not undermined it.

If enacted, the change will require intellectually disabled young people as well as very elderly people to file extensive monthly reports if they want to continue their benefits even at the reduced level. They’ll have to provide details about the property where they live: whether it’s leased or owned, as well as the names of anyone in the home, and whether any of these people has any new income or assets. They’ll also have to include documentation of all household bills and expenses, showing how much they do or don’t contribute personally, as well as financial documents such as bank statements and any pay stubs.

All of this falls under something that scholars Pamela Herd and Donald Moynihan have called “administrative burdens.” And that phrase might sound academic, but what it describes is something families feel every single day.

Administrative burden is what happens when a system becomes so complicated, so layered, so full of steps and rules and exceptions, that accessing support becomes its own full-time job.

It’s the endless paperwork. It’s the unclear instructions. It’s being told one thing by one office and something completely different by another.

It’s missing a deadline you didn’t even know existed—and paying the price for it.

And here’s the part we need to be honest about: this complexity isn’t just a flaw in the system. It functions as a strategy.

Because when you make a system harder to navigate, fewer people successfully get through it.

Not because they don’t qualify. Not because they don’t need the support.

But because the path is too confusing, too time-consuming, too overwhelming.

So instead of announcing cuts—which people would push back against—you create friction. You create doubt. You create barriers. And the result is the same. Fewer people receive benefits.

That’s what it means when we say complicated systems “do the work” of shrinking social programs. The system itself becomes the gatekeeper—not eligibility, not need, but navigation. And who does that hit the hardest?

Families already stretched thin. Parents juggling jobs, appointments, therapies, school meetings. Caregivers who don’t have time to sit on hold for hours or decipher policy language. It also creates a divide.

Families with resources—time, money, legal help—they can push through. They can figure it out. They can protect benefits.

Families without those resources? They fall through the cracks. Quietly.

And then we tell ourselves the system is working because technically, the rules are still there. But access is not the same as existence. A benefit that you can’t realistically access is not a benefit. And this is where it becomes deeply personal.

Because at the end of the day, families should be able to plan. Not guess. Not wait. Not brace for impact.

You should be able to look ahead and say: This is what my child’s financial life will look like. This is what their housing situation will be. This is what supports will be there—medically, educationally, socially. There should be some level of predictability. Some level of stability.

Because without that, you’re not planning a future—you’re reacting to uncertainty. And for families raising and supporting individuals with disabilities, that uncertainty isn’t just stressful. It’s destabilizing. Because every decision—where to live, how to work, what supports to pursue—depends on a system that is supposed to be reliable.

And when that system becomes harder to understand, harder to access, and harder to trust… It doesn’t just create confusion. It takes away the ability to plan a life.

Now let’s talk about who this actually affects. We’re not talking about a small population. Hundreds of thousands of disabled adults could see reductions in their benefits under these kinds of changes. These are individuals with autism, Down syndrome, physical disabilities, and complex medical needs. Many of them rely on family support to maintain stability and quality of life. These are not abstract cases. These are real people, real households, real futures.

And the consequences for families are immediate and deeply personal. Imagine being told that if your adult child lives at home, you may need to charge them rent to avoid losing benefits. That means creating a financial transaction within your own family just to satisfy policy requirements. Or consider the gap between families who can afford legal help and those who can’t. One family navigates the system successfully because they have guidance. Another loses benefits simply because they didn’t understand a rule. Not because they weren’t eligible—but because the system was too complex to navigate.

And then there’s the long-term consequence that no one is talking about enough. When families can’t make the numbers work, when benefits shrink and support disappears, there are fewer options. And one of those options—the one we’ve spent decades trying to move away from—is institutional care.

This isn’t just a financial shift—it’s a structural one.

Because policies like this create a real threat to independent living. They can push disabled adults toward institutional settings, not because it’s what families want, but because it becomes the only viable option left. And with that comes greater dependence, fewer choices, and less control over daily life.

And we have to be clear about what that means.

It undermines decades of disability rights progress—progress that fought to move individuals out of institutions and into communities, into homes, into lives with dignity and autonomy.

Which is not only more restrictive, but often more expensive. So we’re not solving a problem—we’re shifting it, and in many cases, making it worse.

For years, we’ve been moving in a direction that values independence, community living, and dignity. We’ve worked to ensure that individuals with disabilities have the opportunity to live meaningful lives outside of institutions, with support systems that promote autonomy. But changes like these don’t move us forward. They move us backward. Because when you reduce financial support, when you penalize families, and when you make systems harder to navigate, independence doesn’t grow—it shrinks. And when independence shrinks, dependence increases.

There’s a phrase that captures this perfectly: the confusion is the policy. Not a side effect. Not an oversight. A strategy. Because complexity limits access without ever having to publicly announce cuts.

And I want to speak to this not just as someone who understands policy, but as someone who has lived in this space professionally for decades. We tell families to plan for adulthood. We talk about transition. We emphasize preparation for what comes next. But how do you plan when the rules keep changing? How do you build stability when the foundation isn’t stable? Families are already overwhelmed. They are navigating education systems, medical systems, and social systems all at once. Adding another layer of uncertainty doesn’t just complicate things—it destabilizes everything.

So what do we do with this?

First, we stay informed. Even when it’s frustrating. Even when it feels overwhelming. Because the less we understand, the more power complexity has.

Second, we get connected. Advocacy groups, disability organizations, other parents—these connections matter. Because no one should be trying to figure this out in isolation.

Third, we ask better questions. Not just what happens right now, but what happens at 18, at 21, at 30. What does this mean long-term? Because these policies aren’t just about today—they shape the future.

And finally, we share this conversation. Because awareness is the first step toward advocacy. And advocacy is how change happens.

At the end of the day, this comes down to something simple: families are not trying to take advantage of the system—they are trying to build stable, meaningful lives for their children, and policies should support that, not undermine it. This isn’t just about policy—it’s about whether our children can live stable, independent lives with dignity, and when support becomes harder to access, families lose the ability to plan for the future. Stay informed, get connected, and speak up—because this isn’t just policy, this is your child’s future.