Sam is a smiling, wiggly six-year-old who loves dinosaurs and "anything big and powerful," says his mother, Tabitha, a full-time parent and former special education teacher. Sam lives with his seven siblings and parents in a small town in central Georgia.
Sam has significant disabilities including cri-du-chat syndrome — a rare genetic disorder. He can use a walker for short distances, but he mostly gets around using a wheelchair.
Lately, Sam has been bestowing Sign names upon everyone in his house— Sam primarily communicates using American Sign Language (ASL) because he's partially deaf. His own name translates to "Sam Giggles," which he does a lot.
Since Sam started going to school, Tabitha says he has faced a number of challenges getting the services he needs, including classroom instruction in ASL.
"How do you teach a child to learn if they don't even speak the same language as you, and you haven't found a way to bridge that gap?" Tabitha asks.
On top of language barriers in the classroom, Sam also hasn't been getting special education support, and he has had trouble accessing the school grounds in his wheelchair. Since February of last year, Sam has been doing virtual school, and before that, he was going to school in-person. At first, the school was unable to provide a wheelchair-accessible bus.
"I think that these stories are tragic for the teachers. I think they're tragic for the students," Tabitha says. "I think what we've failed to do as a society is not make it tragic for the people who are making the decisions."
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Seeking solutions
Tabitha has spent years fighting to get Sam the services he needs to get a free and appropriate public education, which is guaranteed by federal law. Eventually, she turned to the federal government for help and filed a complaint with the Department of Education's Office of Civil Rights.
It was a culmination of many things – like the fact that Sam's school acknowledges that he primarily communicates in ASL, and that his hearing could worsen, but he has yet to receive instruction in his native language.
District reports say Sam's current hearing loss does not meet the state of Georgia's criteria for "deaf or hard of hearing," meaning they don't have to provide him instruction in ASL.
"When I got to the point where I felt like I couldn't do anything about it and yet I knew the law was on my side. That's when I decided to file." Tabitha recalled.
She felt like a federal complaint was a last resort to get Sam a quality education. But the investigation into his case has been going on for a year and a half now. It's time that Sam can't get back.
Scarce resources
Over the course of a year – in 2022 and 2023 – the Department of Education received over 19,000 discrimination complaints based on race, color, national origin, sex, age and disability. NPR heard from many parents around the country who said their cases took too long to resolve.
Catherine Lhamon is the assistant secretary of education for civil rights. She says she shares these families' frustration about long wait times, but that a thorough investigation involves an often complicated, time-consuming process.
Lhamon says that the OCR's investigators are also overwhelmed, with more than 50 cases each. Part of the problem is a backlog from the pandemic, and a severe special educator shortage around the country. But it's also about money.
"Last year, Congress flat-funded our office. And that has meant that we are not able to bring on new people even though we are now seeing close to double the cases that we were seeing ten years ago," Lhamon said.
While thousands of cases are dragging through the system, there is one option Lhamon says has made faster resolutions possible: early mediation.
Now, parents and districts can more easily choose to meet with an OCR mediator instead of going through a formal investigation.
For Tabitha and John, mediation didn't work in a past state complaint, so they opted for an investigation. Now, because of how long the OCR investigation is taking, Tabitha is considering suing the school district.
Some of their concerns with the district have deepened since they filed, but they have seen some progress. Sam's school eventually provided a wheelchair-accessible bus. Last year, Sam got an ASL interpreter, though the district has since taken that service away. The fight has been draining for Tabitha, but it's one worth waging, she says.
"If Sam's future is wide open, that's my dream. I want him to experience what any six year old gets to experience."
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