Parents built special education. Now they’re fighting to save it

In 1975, a federal law promised every child with a disability a free appropriate public education. Fifty years later, that promise is on shaky ground. Jessica talks with education reporter Anya Kamenetz, host of Understood’s podcast series Zero Reject, about cuts at the Office for Civil Rights, the roughly 25,000 complaints left in limbo, and why meetings for Individualized Education Programs, or IEPs, feel like a battle. Plus: the parents who built special education, and what gives Anya hope.

• Listen: Zero Reject: The Uncertain Future of Special Education

• Read: What is the Office for Civil Rights (OCR), and what’s its role in special education?

• Read: What is HHS, and what does it have to do with special education?

Anya Kamenetz: This has always been a fight championed by parents with skin in the game. And they all work together to show that these kids could learn. And in the parents that I talked to for this podcast who are in the fight today, they are so much like the ones who came before them.

Jessica Shaw: Back in 1975, a law was passed that I think it's fair to say has touched the lives of every person listening to this podcast, whether you're a parent, a student, or an educator. It was called the "Education For All Handicapped Children Act", later changed to the "Individuals With Disabilities Education Act" or IDEA.

The law states that every child in this country is entitled to a free appropriate public education. Free, appropriate, public. It's a bold promise, especially considering that one in five public school students has some kind of disability. It's a promise that has not always been met, as many of us can attest.

And with recent cuts to the Department of Education and the Office for Civil Rights that sits inside that department, well, that promise is starting to feel even more elusive. So how did we get here? How did IDEA come about and how is it working? And what can we expect going forward given how political priorities have shifted?

My guest today set out to answer these questions in a new phenomenal Understood podcast series called "Zero Reject". Anya Kamenetz is a veteran education reporter and in this series, she brings us the stories of people struggling to access what the law says their children are entitled to.

We also hear from those who have fought for these rights and those with a very different vision for education in America. I've listened to the whole thing and it is so good. I'm so excited to have Anya here today to talk about her reporting. This is "Everyone Gets A Juice Box". I'm Jessica Shaw.

Hi, Anya. Thank you for being here.

Anya Kamenetz: Thank you so much for having me.

Jessica: So, Anya, you are hosting "Zero Reject". This podcast covers so many things. How would you just describe it?

Anya: I think the thing that I'm proudest of is the way that it uses the stories and the voices of real families and kids to illuminate this huge system that is sort of existing invisibly that we never really think about, which is how do we actually make sure that we meet the potential of every single kid in this country.

Jessica: What is it about this time right now that we're living in that makes this podcast so relevant?

Anya: So, the second Trump administration caused a lot of different changes to come at us very, very quickly across the whole federal government. But the changes specifically to education and to students, I don't feel like have gotten enough attention.

So what I really wanted to do was make a show that helped people understand the downstream impacts on students. And a lot of people don't understand what the Department of Education does and doesn't do. Right? So, education is locally controlled in the United States. There are about 14,000 school districts in the country.

And the federal government doesn't set curriculum, but what it does do is enforce federal laws. And specifically with students with disabilities, they are entitled to a free appropriate public education because of federal laws. Now some of that is being yanked away.

Jessica: Yeah, I mean I think that even when people talk about education and the Department of Education, it's like as parents we all kind of have a sense of what that is. But the Office for Civil Rights within the Department of Education, I really did not know a ton about and learned a lot listening to the podcast. So can you explain that because you cover that a lot in the show.

Anya: Yeah, and it's something that even Beth who is in the podcast who worked there admitted the same thing. When she applied for a job there, she had never heard of the Office for Civil Rights. But the Office for Civil Rights in general, it is the complaint office for civil rights violations.

And when we say civil rights violations within the context of education, that is everything from gender and sex discrimination, racial discrimination, and the majority of complaints, 60 to 70 percent that come in, have always been about students with disabilities. So that is what we zeroed in on here in this podcast.

Jessica: How did the Trump administration impact the OCR?

Anya: So, the Department of Education, because of its status defending civil rights, has come under fire. And actually in "Project 2025", there was a very clear call to eliminate the Department of Education. And Trump appointed a Secretary of Education who said that was her mandate to sunset a quote "failed federal bureaucracy".

So they want to get rid of the Department of Education altogether. They can't do that without Congress. So what they did was they went through with the DOGE cuts, which people might have been familiar with, and there was USAID and different areas where federal employees got laid off or severed.

And this happened in the Department of Education. Specifically, they hit the Office for Civil Rights very, very hard. Seven out of the 12 regional offices were closed and about 300 people were let go initially. There has been some back and forth on that, but it was really decimation.

(05:15) The role of the Office for Civil Rights and the impact of federal budget cuts.

Jessica: When there are all those cuts and when there are regional offices closed and people laid off, what's the impact that's being felt?

Anya: So, as a parent, if you are trying to get your kid the free appropriate public education that the law demands, you obviously go first to your kid's school. If you can't get traction at the kid's school level, you might be demanding new IEP meetings and you're trying to work through the school process. You might go to the district level.

You can do some enforcement at the state level, so you can make a state complaint. If you have money, you can hire a lawyer, but there aren't that many special education lawyers and they're not cheap. And so the Office for Civil Rights is kind of like the boss level. It's a last resort for many, many parents who don't have the money to hire a lawyer and they need someone to hear and adjudicate their complaint.

Now, it was always an overwhelmed office. It was never able to settle every complaint as quickly as people would have liked. But I definitely spoke to parents who said, "I had a problem in my kid's school and I felt like this doesn't just affect my kid, it affects other kids as well in the same situation".

So what I would like to do is file this complaint. I talked to a mom, Kristin, in Denver. She filed a complaint, heard back from the office, the office talked to the district, the district was very responsive. Her kid got a new placement that made more sense, plus they retrained the teachers at the school. Right. So that's how it works when it's working well.

Jessica: Which helps then down the line. It's not just that kid, but it lays the groundwork for another kid and then another kid and another kid.

Anya: And that's what keeps so many parents fighting and what's honestly so moving about stories like this, because parents say it's not just my kid I'm fighting for. Yeah. So without that, or with a very diminished Office for Civil Rights, what we have is a lot of complaints that just disappear. And I talked to a mom who was in that situation as well.

Jessica: Yeah, tell us about the — there's such a backlog of complaints at this point because there are just literally not enough people to respond to the number of complaints coming in or cases or issues. So what is existing in limbo right now and what are these parents doing?

Anya: So, at the time that the Office for Civil Rights went through these shutdowns, it was calculated that about 25,000 complaints were kind of in the ether. And since then a very small minority have been resolved. So what does that mean?

I mean I talked to this mom, Allison, whose complaint was filed over a year ago, a year and a half ago now, and she initially heard back. So that was amazing. She heard back very quickly and they said, "We're looking into your complaint". Then that office shut down.

The complaint was transferred to a different office in a different region of the country and it's been radio silence since then. And Allison has just been out there struggling with her two kids, battling the school district, no money to hire a lawyer, and just fighting for her kids basically on her own as though the OCR didn't exist.

Jessica: And you'll find out what happens in the show. One of the things that struck me so much is that it puts parents in this situation where with every passing month and year that you're not hearing back from anyone, your kid's getting a year older, your kid's falling a year more behind and is increasingly frustrated.

And as a parent you're increasingly frustrated and sad and heartbroken. And there's this situation where as a parent you also find yourself almost going against the teachers and the school because you find that it becomes sometimes a contentious relationship where it should be a partnership.

Anya: I feel that so much and one of my guiding questions going into this podcast was: Why is this so adversarial? Why is it that almost every single special ed parent — and let's be honest, mostly mothers — describes this same battle? You know, hours-long IEP meetings, endless paperwork, going back and forth with the teachers and with the principals and with the aides and trying to get their kid's needs met. Why does it have to be so adversarial?

And in delving back into the history of special education and how it got this way, I really realized that the adversarial nature was kind of baked in from the beginning. And we really need to kind of pull back and look at this a little bit of a different way if we don't want to strand so many families in this endless loop.

Jessica: I'm glad you brought up the history because one of my favorite episodes of the podcast is about the history of special education. I loved learning about and just seeing the journey that special education has taken in this country both for parents and for students and also on the legal level, on the federal level.

I guess can you kind of contextualize a little bit of the history because it's not like it was ever like, "Oh, we have this perfect situation and then it's gone downhill since then". It's always been a little bit problematic.

(10:14) A history of special education advocacy from the Kennedy family to modern parents.

Anya: Oh my gosh, yeah. I mean, part of this podcast is really — this is the 50th anniversary. Last year, 2025, was the 50th anniversary of the first "Education For All Handicapped Children Act", now what is called IDEA, was passed in 1975. And so this is living history. I was able to contact more than one person who remembers the time before IDEA and then now what has happened since then.

And it's a very inspiring story. I mean what you have is a story of people insisting on the humanity of every child and the potential of every child. You know, that every child deserves to be challenged, deserves to become part of society and contribute in the way that they find most meaningful.

And so some of this goes back to the Kennedy family. So we hear about Eunice Kennedy Shriver and her kind of decades of work to make people understand that every child needs to be included and this was because of her personal experience with one of the Kennedy sisters, Rosemary Kennedy, who had intellectual disabilities.

So I find that a really moving story. I think that the quest to show that everybody's an equal human being and everyone has equal rights is always going to be an unfinished one. And certainly today we feel like it's being attacked as never before. And putting kids with disabilities front and center really kind of points the fact that we don't just fight for our own rights, but we have to be fighting for other people's rights as well and that's how we all go forward together.

Jessica: We know now that a lot of the people who are fighting for change and fighting for the rights of students are parents with skin in the game. I mean they want the best for their children and for other children like them. I'm curious if you can tell us a little bit about someone you spoke to in the history of special education who was also herself someone who was really invested because of her own personal story and what she did.

Anya: So, that has really always been true. This has always been a fight championed by parents with skin in the game. And one of them that I was fortunate to talk to was Ann Turnbull. She and her husband Rud were named two of the 36 most important people in the history of special education several years ago.

Basically, Ann was a teacher. She really had a calling to teach students with disabilities and she met and married a man who was a lawyer named Rud Turnbull. And he had a son who had been institutionalized, who had an IQ below 50, Jay. And Ann and Rud got married, they brought Jay home from the institution that he'd been in since a very young baby.

And they set about creating a classroom for him. They had to find the teachers, they had to hire them. The head of the school district there in North Carolina gave them a room in the basement, basically. And they not only did that, but they fought on the state level and then eventually on the federal level to make sure that students like Jay would get opportunities.

And parents like Ann, who were also teachers and advocates, they all work together to show that these kids could learn. You know, that they could take advantage of these opportunities. That was a very big part of the fight. It was believed, she said, at the time that people with an IQ below 50 could never learn to read and they basically proved that that wasn't true. Right.

And so these champions are, you know, they go back in a long line and the parents that I talked to for this podcast who are in the fight today, they are so much like the ones who came before them.

Jessica: Just to go back to the kind of the political side of this, you spoke with someone from the Heritage Foundation who they were kind of the architects of "Project 2025". What did he have to say?

Anya: So Jonathan Butcher at the Heritage Foundation is one of the co-authors of "Project 2025". He's written extensively about kids with disabilities. And what that agenda has sort of been about is taking advantage of the dissatisfaction of parents of kids with disabilities to say, "You should stop looking to public schools for the answers and we should do everything privately".

And so they've been very successful actually, especially since the pandemic, in increasing what are called voucher programs, Education Savings Accounts, and other choice-based programs that enable parents, especially parents of kids with disabilities, to take their kids out of the public system and try to find a place for them somewhere else.

And choice can be very beneficial. And the ability to pick a model that you think is going to fit your kid's needs is obviously very attractive and I have definitely talked to parents who feel like this is the best choice for my kid. The problem comes on the systemic level because when you really are trying to produce the best outcomes for kids with disabilities, especially the ones who need the most support, it can be very expensive.

And the kinds of voucher programs that we're talking about don't really pay for that kind of education. Right. Plus, you have the issue that private schools are not required by law to accept all children with disabilities. So this is never going to be an equitable option that actually advances all kids with disabilities.

(16:51) Looking toward the future of education through parent activism and inclusive design.

Jessica: Yeah, I mean you mention this in the podcast, that a school can cost — I mean not even a boarding school — up to $200,000 a year. My jaw fell on the floor when I heard that.

Anya: It really is incredible. I mean New York City where we are is something like the national capital of specialized private schools for kids with disabilities. Some of them have amazing outcomes, I mean amazing approaches. But unpicking that knot and figuring out how does this formula actually apply and how could we actually provide individualized attention, small group work, and experienced educators and all the wonderful things that this very small group of kids gets to take advantage of.

Jessica: I have to say I loved that you talked to kids. I loved that you talked to students and got their perspective. I think so often when people talk about education it's done from a distance even, you know, "Well let me tell you how this should be". And there's something very powerful about hearing from the actual students.

Anya: I appreciate that. It's something I take from my NPR days that we just always tried to get every single person who's part of the story involved. And I also have to give that to the moms who agreed to be interviewed for the podcast and to let their kids be interviewed — to Kelly, Kristin, and to Allison — that they realized that this was important and it was worthwhile. It was worth the vulnerability, letting someone stick a microphone in your kid's face because they think that it's for a higher purpose.

Jessica: One of the things I love so much about the show is it really gives you a past, present, and future look at education. And I know no one has the answer. No one has, "You know what, all we need to do is this thing and then all kids get the best education and everything is worked out and we, you know, skip off into the sunset". But what are the ideas that are floating out there that seem to be gaining some traction with people who are invested in this issue?

Anya: Yeah, I guess the first thing that I'll say is that there continues to be a lot of energy around parent organizing. So it was really inspiring to talk to the parent organizers and activists, especially in San Francisco in the Bay Area, where there are a couple of different organizations that really follow an organizing model, like a political organizing model, to get parents who are mainly immigrants — get them to have a voice in their kid's education.

And they've been successful in lobbying the school district there to allocate more resources, to have more translation services, and to help parents get kids the services that they need. So parent activism is going to remain really important.

Looking within the classroom, I think the notion of what's called Universal Design for Learning ends up being very attractive because what we're talking about is making school better for all kids. The way that you do that is by offering more choices, more entry points.

One teacher coach that I talked to really said something that was an "Aha!" moment for me, which is that you need to have a growth mindset for everybody in the classroom and everybody in the school, not just for the students. So figuring out how we empower teachers, make teachers feel supported, make them feel like they have the tools that they need — whether they are the teacher, the special ed teacher, the support staff, the reading specialist — all of those people are part of your student's success and they all need to be able to feel like they can make a difference and make things better and we need to support them.

Jessica: What are the other federal changes that you talk about on the show that parents who are listening should be aware of?

Anya: Yeah, so when it comes to special education within the Department of Ed, there's Office for Civil Rights, which is this sort of oversight, and then you have the administration, implementation, and funding of the law. And those staffers are in the process of being transferred over to the Department of Health and Human Services.

And there are many different kinds of objections to this move. So the people that are doing it are saying this makes sense because people with disabilities are covered under the Department of Health and Human Services. But the objections are, number one, students with disabilities are not primarily their diagnosis. They are primarily students.

And when you move them into a whole department and organization that is looking at people through their medical conditions, you're not really going to get this full understanding of their humanity and you're not going to get the law enforced in such a way or adjudicated in such a way that brings forward the educational goals that students have.

The second objection that people have to this movement into the Department of Health and Human Services — and this has been brought up at a Senate hearing, for example, over the summer — is that the head of the department is Robert F. Kennedy Jr. Robert F. Kennedy Jr. is on the record saying a lot of things about students with autism, students with ADHD, and different kinds of psychiatric diagnoses that are really objected to by a lot of people.

Because they seem to say that he downplays and disparages students with autism and students with ADHD and their futures. He seems to be on board with possibly taking them away from their families. He's talked about reparenting, he's talked about wellness farms, and he's talked about students with autism will never play baseball, you know, they'll never write poetry. And these are things that are dehumanizing. It's dehumanizing language and that is really upsetting to a lot of parents and advocates for people with disabilities.

Jessica: What is something — you've been covering education like I said for a long time — is there one thing I guess that gives you hope?

Anya: I think if there's anything that really gives me hope, it's — I'll go back to talking to Beth. So I talked to Beth in the first episode and she was severed from her dream job. She was there for two decades working for the rights of kids with disabilities at the Department of Education.

And now she's in a different — she started her own company and she told me that she's still thinking about ways that the Department of Education could be better. You know, and that the Office for Civil Rights could be updated and more innovative and more responsive. And she kind of can't let it go.

And I know that there was a bill introduced over the summer that had two Republican co-sponsors to restore the Department of Education and to restore its funding and restore these special education staffers, many of them. So knowing that special education was bipartisan for so many years and that there are so many people who care so deeply about these kids and these students, that's what gives me hope.

Jessica: Anya, congratulations on this series. It's really an extraordinary podcast.

Anya: Thank you so much and I'm so happy to be part of the Understood.org family.

Jessica: The new podcast is called "Zero Reject". You'll find it wherever you get your podcasts. Check it out, give it a follow, and if you find it interesting please tell other folks about it. Many thanks to Anya Kamenetz for coming onto this show to talk about it.

Thanks for listening to "Everyone Gets A Juice Box". The show is hosted by me, Jessica Shaw. It's produced by Julie Subrin and Anna Rothschild is our senior podcast producer. Video is produced by Max MacKenzie and edited by Lance Johnson. Our associate director of content development is Calvin Knie.

Briana Berry is our production director and Neal Drumming is our editorial director. If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to podcast@understood.org. This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson.

Understood is a nonprofit organization dedicated to empowering people navigating neurodivergence. If you want to help us continue this work, donate at understood.org/give. That's it for this episode of "Everyone Gets A Juice Box". Subscribe or follow the show so you never miss a conversation and send this one to someone who needs to hear it.