Anya Kamenetz on the Fight for Special Education in America

Debbie:
Hey Anya, welcome back to the podcast.

Anya Kamenetz:
Thanks for having me back, Debbie.

Debbie:
Yeah, I was pretty excited when I heard about this new project you’re doing with Understood. We love Understood. And I was super interested in the topic that you’ve been exploring, what you’re going to tell us all about. But why don’t we kind of start there? You’ve been covering education for more than 20 years and you have tackled this really unique project. So would you kind of introduce us to Zero Reject and what you’ve been up to?

Anya Kamenetz:
Yeah, so Zero Reject is a six episode limited series that really captures where we are in the realm of special education right now as a country, a little bit of how we got here, and then a little bit of where we might be going next. And understood.org, as you know, it’s a nonprofit that really focuses on the lives of people with neurodivergence. And they were interested in contextualizing some of these big moves that have been announced at the federal level. And that was really the starting point for this exploration.

Debbie:
So is this, I know you’ve been an education reporter, but was it kind of new territory in many ways for you? Like where was your kind of learning curve?

Anya Kamenetz:
You know, I would like to think that as an education reporter, I had encountered the world of special education. I knew that it was 15 to now like 17% of all kids that we’re talking about. It’s not some marginal case. I knew that this was a civil rights issue. But I still had so much to learn. And I had really big questions about why the system always seemed to be so adversarial. I mean, I’d come across stories here and there of just, you know, parents, usually moms working so, so hard and struggling for years to get their kids the services that are appropriate. And I really wanted to know how representative that was and also just why. Why is the system so adversarial? So that was one of the big questions that I brought in.

Debbie:
Yeah. And, you know, that is, I’m talking to parents every day who are kind of in it who, especially right now as we’re recording this, it’s like IEP season and, you know, it’s also October, early October. And this is the season when, you know, kind of the sheen of the new school year is worn off and problems start to kind of emerge. And so that adversarial, you know, the meetings are happening, the emails, the, and it can be a very stressful time for parents. And I wanna say too that seventeen percent, that was a statistic I didn’t know. I was surprised when I listened to it. I mean, I know one in five, like we talk about that, but seventeen percent actually receiving services was surprising to me.

Anya Kamenetz:
Yeah, I mean it has been growing and it’s been growing since the pandemic. It’s higher in a lot of the big urban school districts. I mean, I think in New York City it’s nudging 20%. And you know, there’s a lot of growth at the edge of what we call sometimes invisible disabilities. Those are the specific learning disabilities as well as ADHD and other medical conditions that might have accommodations like a 504 plan instead of an IEP. So it has been growing and you know, I think that is kind of a measurement of the fact that there’s just a lot of families that feel like under the traditional system they’re not getting their needs met.

Debbie:
Yeah. Yeah. Would you talk with us about how you kind of explored this? I have listened, as we’ve recorded this or the day that we’re recording this, I think episode four of the six just dropped yesterday. So I’m mostly caught up. And there’s a lot of history in there, which I found really interesting to understand how we got here. And I’m just curious as you dove into the history, IDEA, how do I say that? I-D-E-A. And you know, how our special education services have kind of developed and emerged over the years. What was really most surprising to you or what did you find was really interesting about that trajectory?

Anya Kamenetz:
Yeah, I mean, I think we can learn so much from looking at the history, and it really does help explain why the system is the way it is today. So it’s just really important to understand that, you know, prior to about 50 years ago, there was no right to an education in many, many places. If you had a kid who was outside the norm in a handful of different ways, states could have laws that called those kids uneducable and they were allowed to be excluded from compulsory education laws. And so basically, in the wake of Brown versus Board of Education in the 1950s, families got together state by state and they brought lawsuits and cases under this principle that, you know, education is an equal right and deserves equal protection under the law. And those state cases ultimately, through a lot of pushing, a lot of advocacy, you know, built up to the momentum for what is now called IDEA, which passed in 1975. And one of the interesting, you know, historical threads that I pull out is that a lot of this is really credited to the advocacy of Eunice Kennedy Shriver, who is one of the Kennedy family, right? The sister of John F. Kennedy, the president, as well as the sister of Robert F. Kennedy. And they had a sister who it was well known, was born with intellectual disabilities, Rosemary Kennedy. And she ultimately very sadly had a lobotomy and was institutionalized, you know, by the way, as were over a hundred thousand individuals with intellectual disabilities during that time period. So it really was a widespread thing. These children were hidden away in attics, in basements, you know, outside of the mainstream. And it was a fight for not only for education, but really a fight for human dignity. Right, for the belief that everybody is equally valuable and everybody has the right to achieve their potential. And that is exactly what is coming under stress right now.

Debbie:
Yeah. Yeah. And I guess when you say that, it just begs the question, right? Did we ever even get there? It is such a beautiful vision. Of course, everybody is deserving of dignity. And you talk a lot about inclusion, full inclusion, and what does that mean to be in that least restrictive environment? And we know that the system’s really been flawed from the very beginning.

Anya Kamenetz:
Yes, absolutely. I mean, in that original law, the federal government pledged to provide 40% of the support to educate kids in special education, and it has never exceeded 12%. So the federal support has always been lacking. The support on the state and the district level has always been kind of a fight by inches. And I mean, I think we can look at this, you know, now we are like well into the 21st century when we look at the progress of the 20th century. It’s not that dissimilar, honestly, to the fight for racial integration, right? We know that we’ve never achieved the vision of the time of MLK Junior. It doesn’t mean that we don’t keep fighting for it.

Debbie:
Yeah, I found that really fascinating, the 40% versus 12% statistic as well. And, you know, just wondering what does that look like then in the classroom? I have firsthand experience of that. But from the parents, and you did interview a number of families in different situations. I loved getting to know some of those families that you connected with. What were some of the biggest ways that that kind of discrepancy shows up?

Anya Kamenetz:
I mean, we know that about half of all districts say that they’re having trouble hiring certified special education teachers, especially in the wake of the pandemic. There’s severe shortages in teacher aids, you know, the paraprofessionals that are often kind of providing the crucial support to kids, especially if they have more challenging behaviors, even school bus drivers, which is a really big problem in rural areas, if specialized programs are far away from where kids live. And so what that looks like on the baseline level, I mean, I interviewed a mom named Allison who has two kids with a variety of different challenges in a very small town in Indiana. And her son, Tristan, when he was starting out, he was in a specialized preschool program. Then when they went to start kindergarten, they tried to put him into a gen ed class. And this was just so obviously not the right setting for a kid who was struggling with potty training, struggling to hold a crayon, had really severe behavioral issues. And it led to him eloping from the classroom, having huge meltdowns, just like a nightmare situation. And she’s getting called to the school, you know, three or four times a week. She can’t work anymore. She has to stay home from her job as a hairdresser. So they’re living on basically nothing but disability payments. And they try to get her to send the kid away to a hospital, to a residential hospital program, just a couple of weeks of that school year. And this is a, and she really had the mama bear. She’s like, that was my baby. That was my baby who, you know, drank a bottle to go to bed at night. I was never in a million years gonna send him away. And, you know, you think about that. If somebody told me I had to send my five year old to live in a hospital, I would be running through the wall like the Kool-Aid man. I mean, that’s completely ridiculous. But it’s because this district didn’t have the resources, didn’t have a setting for him. They had one center for the whole, you know, for a couple, two districts shared for specialized services. And they just didn’t have the environment that he needed.

Debbie:
Yeah, that was hard to listen to when I listened to that episode. Just knowing, you know, my kiddo was that kind of very highly dysregulated, you know, had all the oppositional labels, all those things because of being dysregulated and being in an environment which was really challenging. And that being viewed as bad behavior, you know, just this is a bad kid. And so hearing that story and that recommendation, it was really heartbreaking. And I think listeners, there’s going to be so many people listening to this, they’re like, yeah, that’s exactly what’s happening to my kid. So we’re gonna talk about what’s currently happening in the Department of Education, you know, a little bit later in the episode. But one of the things you talk about is what’s happening now and kind of the system, the flawed system that is in place being threatened and being dismantled really now, that has been threatened for a very long time. And you talk about this first coming up when Ronald Reagan was president. Could you talk a little bit about that?

Anya Kamenetz:
Sure. So the Department of Education actually was established just under Carter. So this is really kind of a short period of time, right? So IDEA nineteen seventy-five, Department of Education nineteen seventy-eight, seventy-nine, and you know, special education being only one of the things that the Department of Ed was established to administer and oversee and enforce. And the Reagan administration kind of pledged to dissolve the Department of Education and return all of these regulations, all this regulatory oversight, all of it back to the states. And what happened at that point was that, you know, the parent-led movement that had been fighting for the federal right to an education for kids with special needs, really stood up and said, you know, if you put this back to the states, that will mean that all of these guarantees, realistically, they’re going to go away. We’re gonna be fighting on a state by state level, you know, a war of attrition. And we know that in this big, big, heterogeneous country, it’s just gonna be very different in, for example, Pennsylvania, in Indiana, in Colorado. And so we’d rather have this happen on the federal level. And ultimately those arguments prevailed and throughout, you know, Republican administrations from then until now, the Department of Education has continued to grow and specifically special education has had bipartisan support from Congress almost this whole time.

Debbie:
Yeah. And not to jump ahead, but I’ll just say I remember during the, you know, when Project 2025 came out and you did interview the person who wrote the education section of that, which was really, I’m so glad you got that access. It’s interesting to hear his responses. But I just remember thinking, like, well, this’ll never happen, right? It just seemed like this will never, never happen. And so it has been fascinating to see what’s been going on right now. But I wanna go back to the Office for Civil Rights, which is something that I didn’t really know about. So for families who’ve never needed that, could you talk about what the Office for Civil Rights is and what that can do for a family?

Anya Kamenetz:
Absolutely. So the Office for Civil Rights, you know, up until twenty twenty five, the Office for Civil Rights sat inside the Department of Education. And its job is to take civil rights complaints from students. And it was free to file those complaints. You could file them online in about a couple of hours. And these complaints concerned every kind of civil rights. So racial discrimination, Title IX, you know, gender or sexual discrimination, and but about sixty to seventy percent of the complaints usually came in that were about disability rights. And so I did happen to speak to a family who had had a successfully resolved complaint. And I think what’s really key about this is that it’s free, right? So it’s free to use this system. They’re more likely to resolve and investigate complaints that are more systemic. So things that have to do with not just with one kid, but where they feel that that one kid might be emblematic of a pattern of behavior in a district. You know, I don’t want to sugarcoat it because the attorneys and the advocates that I spoke to said that the Office of Civil Rights oftentimes was very slow, overwhelmed, unresponsive. But I did speak to a mom, Christine, in Denver, who had a complaint that she felt that her son was being, you know, not served correctly by his charter school. And really she had kind of a fairy tale situation because the advocate, you know, contacted the district. The district was very willing to resolve it, to move him to a better placement, to make sure that his IEP was matching his needs. And it happened in a relatively short period of time. And again, it didn’t cost her any money. And so the Office of Civil Rights served a really important kind of cop on the beat because districts knew that, you know, if they were going to have a lot of complaints that were going to add up to a big pattern of behavior, that there would be this federal oversight that would oftentimes come in and resolve and create really important changes that would make districts more fair. And so that was until, you know, the DOGE that swept through the federal government and about half of their employees were let go in March of twenty twenty five.

Debbie:
Yeah, and you have a really nice conversation with a woman who was one of the people who was let go and was so kind of personally invested in her mission at that job. So that was pretty powerful to hear as well. I think what I heard from what you just said, that example of the mom who did get a good placement, it can work, right? It at least existed. It can work. And I, you know, as you were answering that question too, I’m also thinking it can work especially for people who have more resources to get educational attorneys or to kind of, you know, really get more involved or who have the time and resources to advocate. Like people have to give up jobs, right? To stay home for kids. So the structure was there, but it didn’t always work. And then access or being able to really utilize the available resources isn’t equitable.

Anya Kamenetz:
And I think that OCR was one of the things that made the system more fair because first of all it was available nationally to everyone. And secondly, you didn’t have to hire an attorney and you didn’t actually have to spend any money. If you had, you know, there were volunteer advocates that can help. Allison, who we just talked about in Indiana, she ended up filing an OCR complaint. And she not only did she not have the money to hire an attorney, there’s only one education related attorney in the entire state of Indiana. I spoke to her, Catherine Michaels. And so the idea of getting someone to represent her was a very far off notion. And so OCR really was her resort and she did get an initial response from them, which was a favorable one. But then, you know, her case kind of got lost in the cracks when OCR was decimated.

Debbie:
Right. Right. And I just want to give a shout out. I heard Catherine Michaels on your show. I was like, I had her on my podcast during COVID. So I’ll have a link in the show notes, but I wanted to talk with her about because so many parents at that time were like, what do I do? Because my kids’ IEP clearly isn’t being implemented. But everyone was kind of like, you know, there’s no rules right now, right? Yeah.

Anya Kamenetz:
Did you? Wow, amazing. Yeah. She really is a powerhouse and she actually teaches, to my knowledge, she actually teaches teachers about the law, which is very interesting because a lot of teachers don’t really know special education law.

Debbie:
Right. Well, that’s a good segue. I wanted to ask about the teachers’ reality in all of this too, because you know, you said in the very beginning that we can be setting up this adversarial relationship, or that’s how we can feel. Certainly as parents, like we get very like, okay, bring it on, like I’m going all in here. But the teachers’ hands are tied a lot as well. Could you talk about what you learned in your reporting?

Anya Kamenetz:
I mean, the day-to-day reality for teachers in an overwhelmed school with a lot of kids with a lot of needs is very intense. You know, and I just want to picture this notion of, you know, teachers and school counselors that really have buzzers and they’re basically like, it’s almost like they’re EMTs, right? Like running all over the building responding to kids in meltdowns. That can literally be your entire day. Or, you know, you’re trying to teach a small group but you have, you know, a couple of kids that are really making your job very hard and potentially being unsafe. Right. So when a school is under-resourced and it doesn’t have the right number of specialized, special ed teachers, a lot of times that means that people are dealing with things that they’ve never been trained to deal with. They don’t have the resources or the background to be able to deal with the kids in front of them, or the school’s not giving them the resources that they need to do it. So, you know, that might be a lack of specialists like speech therapists or occupational therapists. It might be a lack of mental health resources. And so in that environment, it really is a lose-lose situation because, you know, your day-to-day life is extremely stressful. The parents are mad at you, the kids aren’t doing well. You know, then you get into the IEP meeting and on the other side of the table is a parent who feels like, you know, you failed their child or you don’t really understand what their child needs. And so I do have a lot of sympathy for the way the teachers get caught in the middle.

Debbie:
So you mentioned in March of 2025, that’s when the Office for Civil Rights got decimated. And that kind of, whatever was happening, we don’t need to go into details, but there was a lot of cuts happening in US government services. And so what has happened since then with the Department of Education and how oversight of special education has moved?

Anya Kamenetz:
Sure. So the Department of Education is sort of in the process of devolving and de-accessioning, I guess you could say. So specifically the Office for Civil Rights, its functions are being kind of handed off to the Department of Justice through a series of sort of joint task forces. And then the other side of things, which is the administration of that 12% of federal funding, as well as oversight and implementation, kind of like technical help from the federal government to states in implementing the federal law, that part is getting handed over to Health and Human Services. And so it’s kind of a slow incremental process. The Department of Justice OCR, not only did they lose a lot of attorneys, we know that Department of Justice also has lost a lot of staff members, but their focus has really changed. So the focus of Office for Civil Rights, even though like I said, 70% of the complaints that they get are kids with disabilities, the decisions and the judgments that they’re announcing, almost all of them have to do with things like transgender student sports and DEI and some antisemitism investigations. So they’ve really changed the focus to things that are kind of like more Republican priorities. The Health and Human Services bit is really interesting because obviously we know that it’s RFK Jr. who’s the head of that department. He’s made, you know, various statements about people with autism, people with ADHD that a lot of people find offensive and derogatory. And fundamentally, I think the problem that many, you know, I follow many people from that department, from Department of Education, and they say, you know, we focus on these young people as students, right? That means we’re thinking about their progress, their potential, their dignity as human beings. You’re getting into something really dangerous if you start thinking about them as patients, right? Because they’re not primarily patients and they may have disabilities, but that doesn’t define who they are. So that’s a categorical kind of issue.

Debbie:
Yeah, like if you’re not watching this on YouTube, I’m definitely having to take some deep breaths because the episode in which you, you know, just of course we all know what RFK Junior has said about autism and other things. And it’s really hard to listen to. And so I think I packed that away. And so it’s upsetting to think that this is the department that’s now overseeing what happens to kids like mine.

Anya Kamenetz:
But I will, absolutely. And I mean, I think it’s a really important time to listen to disability rights advocates and experts and people with disabilities about this because this is something, this is all of our humanity, right? This is all of our civil rights. We all deserve to be treated equally. And it’s what they do to the most vulnerable, they’re gonna do to everyone.

Debbie:
Yeah.

Anya Kamenetz:
And yeah, I mean, that’s the number one thing I’ve learned.

Debbie:
Yeah, that’s a mic drop moment. Yeah. Yeah.

Anya Kamenetz:
That’s the number one thing I’ve learned here, Debbie, is that this is not just about a couple of kids. This is about all of us.

Debbie:
Yeah. I mean, I think when I first started, you know, developing Tilt, that was something I in my own journey of like realizing I’m raising this kid who’s going down a different path and that was viewed as an outlier and there would be a lot of advocacy. I remember thinking this is a civil rights issue, the neurodivergence movement, which neurodivergence wasn’t even being used as a term at the time, but I knew that the movement for our kids to be accepted was one of civil rights. And it is about all of us. So I’m glad that you’re bringing that to this project. I’m hopeful that, you know, you sharing this series is going to just raise a lot more awareness. It’s going to expand beyond, you know, the parents like me who are living it, but really help people see what’s really at stake here.

Anya Kamenetz:
You know what’s been interesting is when I’ve had, you know, obviously friends and family who don’t necessarily identify as being part of this world. And one of the biggest responses that I’ve gotten is that people say, oh my gosh, this made me think of my own time in school and how I felt marginalized and how I felt like people thought I was stupid or people thought I was a bad kid and I didn’t fit in. And there’s so many of us I think that can relate to that, even though we didn’t necessarily, maybe in the eighties and the nineties, people didn’t have these labels or they didn’t have these designations. But I think that’s important as well. Like there is a diversity of different ways of approaching things. And we need to have school communities and communities that accept and actually celebrate people’s difference.

Debbie:
So as this episode’s coming out, it’s kind of a hot time in the political landscape in the US. And so can you kind of bring us up to speed at what’s kind of on the line right now in this moment?

Anya Kamenetz:
So I think something one thing that people should be aware of when it comes to special education is that there was a bill introduced in committee over the summer that would have halted the movement of the special education oversight out of the Department of Education and into HHS. And this bill actually has bipartisan co-sponsors, which is kind of a hearkening back to how special ed was always a bipartisan cause. So, you know, the hope is that if there’s a realignment in the new midterm elections that there might be some more political momentum to recover the special education and restore it to its rightful place in the Department of Education.

Debbie:
Okay, that’s great. Okay, good to know. And I’m also just wondering, again, I haven’t heard the rest of the series. I’m kind of curious to know where it left you. And you know, you did just mention something earlier about, you know, the need for us to really kind of connect and that this is about humanity, which I couldn’t agree with more, but like where did it leave you in terms of your sense of optimism or kind of where you see energy or momentum that we can kind of capitalize on?

Anya Kamenetz:
Yeah, a couple of things. So I introduce and start to explore some of the concepts which I’m sure are familiar to your listeners, like universal design for learning, evidence-based instruction. And these are all approaches that have been shown to be kind of tides that lift all boats in terms of improving learning for kids with and without disabilities alike, and in some cases even reducing the number of kids who are identified as needing extra services, depending on how schools are run. So that’s a huge area of interest and research, you know, by a number of different folks. And then we can look at a future where it’s no longer about rationing resources or having a scarcity-based mindset and then about fighting for access to scarce resources. Because what if schools from the get-go worked better for everyone, right? Then you’re not fighting so hard to get a piece of paper that says your kid is allowed to, for example, move around the classroom or take a brain break, right? This is something that’s available to every kid. So that’s a really, you know, that’s a live, interesting direction. I really loved speaking to, you know, a teacher coach who works in a Southern California school district. And she talked about having a growth mindset with teachers. I mean, we talked about the adversarial relationship, but you know, it’s also the case that if you really engage teachers and give them the proper training and support, which many of them are not routinely getting, that they can really grow in their confidence to build inclusive classrooms. And that is so beneficial for literally all the kids. And then the third aspect that I get into, I mean, I talk a little bit about the role of technology and even things like AI, especially in making the whole process more accessible for parents. So there’s a tool that I talk about called AIEP that was developed to translate the IEP not only into, you know, any language that you want, but also into plain language, plain English, and help parents kind of parse out and figure out exactly what’s being offered to their students. So that was really interesting to learn. And I spoke to a really awesome parent and advocate in the San Francisco public schools. He came here from Mexico at the age of seventeen. He has three kids. And he has become sort of a tireless advocate with other parents for systemic change within his district because it really does, in the end, it all comes back to parents and parent leadership.

Debbie:
Yeah. And I definitely believe this and my listeners know this, that everything that we do on the individual level, yes, we are fighting for our kids’ right to be seen and understood and respected in classrooms, but any movement we make for our child has a ripple effect. Like it’s gonna help the family that’s following us. And so it all matters. I wanna give a shout out to UDL. So we have done episodes on universal design for learning. So I love that you kind of got into that in the series and also just kind of reiterate that we know that those accommodations like getting up, being able to get up and move around, or a lot of the accommodations that are provided for neurodivergent kids actually work for everyone. So we’re not losing anything by bringing some of these things into the classroom. So wow. Okay. I’m gonna name the series again because I really encourage listeners to check it out. I’m actually going to be sharing an episode on this feed, on the Full-Tilt Parenting feed as well. So you can listen to it here.

Anya Kamenetz:
Great.

Debbie:
But then go to Understood or wherever you listen to podcasts, it’s called Zero Reject, The Uncertain Future of Special Education. It’s so well done. It was just really lovely to listen to. I can’t wait to hear the last few episodes. Is there anything before we say goodbye that you would want to leave listeners with?

Anya Kamenetz:
I just want to say thank you. Thanks for this opportunity and thanks for all the work that you’ve been doing over the years to reach this community because I think it’s really important.

Debbie:
Thank you. Thanks, Anya. Congratulations. And yeah, I can’t wait to hear the rest of it.

Anya Kamenetz:
Awesome. And yeah, I mean if your listeners check it out, I hope you’ll leave us a comment and let us know what you think.

Debbie:
Yeah, for sure. Okay. You guys heard that. All right. Thanks, Anya.

Anya Kamenetz:
All right, take care.