“If Sam’s future is wide open, that’s my dream. I want him to experience what any six year old gets to experience.”
Transcript:
ADRIAN FLORIDO, HOST:
Sam is a 6-year-old with an infectious laugh.
SAM: (Laughter).
FLORIDO: He lives with his seven siblings and parents in a small town in central Georgia.
UNIDENTIFIED PERSON #1: Hi, Ms. Keisha (ph). I just put him down and changed his poopy diaper.
KEISHA: All right. Excellent.
FLORIDO: Sam starts his day with his nurse, Keisha. He refers to her as robot Keisha in American Sign Language, or ASL. It’s how Sam primarily communicates because he’s partially deaf.
TABITHA: So he has just related her to one of her – his favorite things.
UNIDENTIFIED PERSON #2: OK.
TABITHA: And so she does the robot dance for him.
FLORIDO: That’s Sam’s mom, Tabitha. She’s a full-time parent and former special educator. Since Sam started going to school, he’s faced quite a few challenges getting the services he needs, including instruction in ASL.
TABITHA: 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?
FLORIDO: On top of language barriers in the classroom, Sam also hasn’t been getting special education support and has had trouble accessing the school grounds in his wheelchair.
TABITHA: I think that these stories are tragic for the teachers. I think they’re tragic for the students. And I think what we failed to do as a society is not make it tragic for the people who are making the decisions.
FLORIDO: After years of fighting to get Sam the services he needs to get the public education he’s guaranteed by federal law, Tabitha eventually turned to the federal government for help. She filed a complaint with the Department of Education’s Office of Civil Rights.
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TABITHA: 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.
FLORIDO: Federal law guarantees every student with a disability a free and appropriate public education, which Tabitha feels Sam is being denied. So Tabitha eventually turns to the federal government for help. She filed a complaint with the Department of Education’s Office of Civil Rights.
TABITHA: When we don’t teach him to read, he doesn’t have the option to be an explorer through reading. When we don’t teach him to access the building and give him the supports he needs, then he doesn’t make those peer buddies, and his world is limited to just his family and not his community. So that’s what I’m doing. I’m opening up the world.
FLORIDO: CONSIDER THIS – the federal government is seeing an all-time high of discrimination complaints, many from families of students with disabilities. Coming up, how one mother is fighting for her son to get a quality education.
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FLORIDO: From NPR, I’m Adrian Florido.
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FLORIDO: It’s CONSIDER THIS FROM NPR. Students with disabilities often face a tough time getting the services they need at school. When they can’t get them, many families seek help from the federal government. And right now, the Department of Education is swamped with a record number of discrimination complaints. That backlog is leaving families across the country waiting months, even years, for help. NPR’s Jonaki Mehta visited one such family in central Georgia.
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JONAKI MEHTA, BYLINE: It’s a lazy summer day for many kids in middle Georgia. But one family of 10 is up and at them on a Tuesday morning at 7:30.
TABITHA: It’s a messy house – well lived in.
MEHTA: Full-time parent and former special education teacher Tabitha calls up to her husband, John.
TABITHA: Dad, can you bring Sam down?
MEHTA: Their youngest of eight children, Sam, is rubbing his eyes as he comes down the stairs in his father’s arm.
TABITHA: Here comes Mr. Sam. Good morning.
MEHTA: Sam’s got a busy day ahead. He’ll have a lesson with his new teacher of the deaf and hard of hearing, an occupational therapy session, followed by speech and language pathology. Sam is a smiling, wiggly 6-year-old who loves to dance.
SAM: (Laughter).
MEHTA: Today, he’s chosen to wear a purple T-shirt with a roaring blue T. rex across the back.
TABITHA: Oh, he’s a dinosaur fanatic – anything scary and big and powerful.
MEHTA: Sam has significant disabilities, including cri-du-chat syndrome, a rare genetic disorder. He mostly gets around using a wheelchair. Sam’s also partially deaf. His primary language is American Sign Language, or ASL. Lately, he’s been practicing his name. It’s an outward-facing fist stroking one cheek. It stands for Sam giggles, which he does a lot.
SAM: (Laughter).
MEHTA: Sam lives in a small town, so we’re only using first names in this story, since he and his siblings are minors, and we want to freely discuss Sam’s disabilities. Once Sam is done with his morning routine of nebulizers and medications, he signs the word ball to tell his mom he’s ready for his favorite activity…
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MEHTA: …Playing in his ball pit. Sam’s parents and nurse can provide him with much of the support he needs at home, but his education has proven to be a huge obstacle. Since February of last year, Sam’s been doing virtual school. Before that, he was going to school in person.
TABITHA: But then there were so many issues with transporting. They couldn’t transport his equipment. They couldn’t have his wheelchair.
MEHTA: At first, there was no school bus with wheelchair access. At one point, Tabitha says the district asked her to leave Sam’s wheelchair at school throughout the week.
TABITHA: Sam’s nurse would have to carry him up the steps, put him into a seat belt. The bus driver and the aide would carry up the bags, you know…
MEHTA: And with his medical equipment, that’s a lot of bags. Tabitha would often end up taking Sam to school herself, equipment in tow. The newly built school campus is only a few blocks from their home. But she’d often get there to find the four accessible parking spaces blocked by school police cars. She showed me dozens of pictures and drove me to the school lot.
TABITHA: And we find that there’s obstacles every time we come, whether it’s a…
MEHTA: Tabitha drives over and shows me a crosswalk with a curb cutout for wheelchair access on one side, but no cutout on the other.
TABITHA: So there’s no access for us to cross the street safely.
MEHTA: When he was going to school in person, Sam was in a general education classroom along with other pre-K students, but…
TABITHA: He was never given a special ed teacher in that class or special ed support.
MEHTA: His school district acknowledges that Sam primarily communicates in ASL and that his hearing could worsen, but district reports say Sam’s current hearing loss does not meet Georgia’s criteria for deaf or hard of hearing, meaning they don’t have to provide him instruction in ASL.
TABITHA: It’s that whole theory of he’s not deaf enough. I don’t know if you know how offensive that term is. I’m being told, but he can hear, and I’m saying, but he can’t hear all of it.
MEHTA: NPR reached out to the director of special education in the district. She said she couldn’t speak about Sam’s case with me to protect his privacy. But in an email, she said, quote, “the district takes each student’s individual needs into account when developing individual educational programs for students with disabilities.”
States and districts have long complained that the onus falls on them for providing services because the federal government has historically failed to provide the funds they promised states for special education. For Tabitha, her frustration led her to file a complaint with the Department of Education’s Office of Civil Rights in December 2022. She had a long list of concerns for Sam, like wheelchair access issues and lack of special ed support.
Five months later, OCR told Tabitha they would investigate three things – whether Sam was being denied a free and appropriate public education, which is guaranteed by federal law, whether the playground was inaccessible to disabled people and whether the parking lot was inaccessible.
TABITHA: I thought that OCR would be able to handle this, that we would make some forward progress.
MEHTA: But the investigation into Sam’s case has been going on for a year and a half now – valuable time in Sam’s young life and his education. 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. I heard from many parents around the country who said their cases took too long to resolve.
CATHERINE LHAMON: I share the frustrations that you’re hearing from families about how long that takes.
MEHTA: That’s Catherine Lhamon. She’s the assistant secretary of education for civil rights.
LHAMON: And we also owe them careful evaluation of facts to figure out how the law applies to the particular concern, and that is invariably a complicated process.
MEHTA: Lhamon says OCR’s investigators are overwhelmed, with more than 50 cases each. Part of the problem is a backlog from the pandemic, but it’s also about money.
LHAMON: Last year, Congress flat-funded our office, and that meant we are not able to bring on new people, even though we are now seeing close to double the cases we were seeing 10 years ago.
MEHTA: There is one option Lhamon says has made faster resolutions possible – early mediation. Now, parents and districts can easily opt for a meeting with an OCR mediator instead of a formal investigation. For Tabitha and John, mediation didn’t work out in a past state complaint, so this time, they opted for an investigation. While some of their concerns with the district have deepened since they filed, they have seen some progress.
The school eventually provided a bus with wheelchair access. Last year, Sam got an ASL interpreter, though the district has since taken that service away. And just a couple of weeks before I met him, Sam started Zoom lessons with Jessica (ph), a teacher for the deaf and hard of hearing.
JESSICA: OK. Your turn to sign.
TABITHA: Backpack. Good.
JESSICA: Backpack – you remember that.
MEHTA: In the lesson I watched, Sam read a story with Jessica and signed his responses to some of her questions.
JESSICA: You read today, and you matched.
TABITHA: It’s magic. He has learned more sign in the last three weeks faster than he’s ever picked up sign language before.
MEHTA: Tabitha says that’s all great, but it’s only for five hours a week.
TABITHA: Imagine if that was every day, like it’s supposed to be, and all day, like it’s supposed to be.
MEHTA: Now Tabitha is considering suing the school district. But with a single income and a family of 10, she doesn’t know if they can afford a lawyer. This whole process has been draining for her, but Tabitha tears up as she tells me why her fight for Sam matters.
TABITHA: (Crying) There’s a certain reality you face where you’re grieving your child, and they’re still here. I totally want to give him everything while he’s with us.
MEHTA: What’s your dream for Sam? Like, what do you want for his future?
TABITHA: If Sam’s future is wide open, that’s my dream. Like, I want him to experience what every 6-year-old gets to experience.
MEHTA: As we drive back from the school, Sam signs to his mom through the rearview mirror.
TABITHA: Yes. Signing swim right now – splash, splash, splash.
MEHTA: At the small, gated pool in their backyard, off comes Sam’s orthosis braces and shoes.
(SOUNDBITE OF VELCRO RIPPING)
MEHTA: Off come his socks.
TABITHA: Can you help me take off your socks? Put them off.
MEHTA: Sam slides to the edge of the water and sticks in his bare feet.
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TABITHA: Kick, kick, kick – fast, fast, fast, fast – (vocalizing).
MEHTA: When Tabitha tries to convince him to go inside the house, Sam instead signs what any 6-year-old splashing in a swimming pool on a hot summer day would – more.
(SOUNDBITE OF WATER SPLASHING)
TABITHA: More? You want in more? (Laughter) Just a little bit more, OK?
MEHTA: In middle Georgia, I’m Jonaki Mehta, NPR News.
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FLORIDO: This episode was produced by Jonaki Mehta and Marc Rivers. It was edited by Steven Drummond and Adam Raney. Our executive producer is Sami Yenigun. Thanks to our CONSIDER THIS+ listeners, who support the work of NPR journalists and help keep public radio strong. Supporters also hear every episode without messages from sponsors. Learn more at plus.npr.org.
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FLORIDO: It’s CONSIDER THIS FROM NPR. I’m Adrian Florido.
Copyright 2024 NPR. To see more, visit https://www.npr.org.
