It had been over a year since Carla and Byron Scott’s 10-year-old son, Tyler, was diagnosed with ADHD, autism, and adjustment disorder. 

The couple questioned whether Tyler’s teachers in Portsmouth, Virginia, knew how to care for his disabilities, or if they would simply pass him through grades even if he performed poorly in school. 

Then, the couple came across a social media post, and their world changed.

“If you don’t have a special needs advocate, you need to get one,” read a comment under an Instagram post by actress Holly Robinson Peete, who has spoken about her son’s autism diagnosis.  

“I never heard of that,” recalled Carla Scott, 38, who works as a project material manager at Norfolk Naval Shipyard.

“It was like a true message from God out of the heavens,” said Byron Scott, 41, who is a quality assurance auditor at Newport News Shipbuilding. “I promise you, that’s how it felt.”

So began the family’s journey with a crucial, if little-known, resource for parents of children with disabilities: a special education advocate — lawyers, former teachers, social workers and others who often work for little to no cost to help parents navigate the complicated maze of administrative and legal issues in school systems.

Under federal law, the nation’s 7 million schoolchildren with disabilities are entitled to a range of legal rights and protections that ensure they receive a free and appropriate education and do not experience discrimination in classrooms. 

But the laws only do so much in protecting and entitling rights to students; they have to be enforced. That’s where the special education advocate — experts in ensuring that those guidelines are followed — comes into play, helping families understand their rights and working with them to guarantee that school districts fulfill their responsibility to disabled students.

While special education advocates have been around for years, they have been the subject of a renewed focus by parents because of a series of potentially sweeping changes to public education by the new presidential administration. Experts also said families can become active members of their child’s school system and encourage local officials to hire more Black and brown teachers to protect their children — no matter who’s president or runs the Department of Education. 

On his first day in office, President Donald Trump revoked executive orders tied to educational equity, excellence and economic opportunity for Black Americans, Native Americans and Hispanics. Last week — as had long been expected — Trump signed an executive order to dismantle the Department of Education; the move is expected to face a stiff legal challenge.

Linda McMahon, a billionaire business executive and former president of World Wrestling Entertainment, currently leads the Department of Education. During her confirmation hearing, she suggested that the most appropriate jurisdiction for administering the Individuals with Disabilities Education Act might be the Department of Health and Human Services.

All of these actions align with Project 2025, a 900-page document published by a conservative think-tank and endorsed by members of Trump’s administration, that calls for a wide-ranging overhaul of the federal government to align with right-wing political ideology. Among the changes proposed in the document is dismantling the Department of Education and reconfiguring the formula that federal officials use to determine how much of federal money should be sent to schools.

In the climate of uncertainty, parents like the Scotts have enlisted the help of advocates to help them make sense of whatever changes may come.

In their fight to make sure that Tyler receives a quality education, the Scotts have spent nearly $10,000 hiring outside advocacy representation and conducting third-party health evaluations. Much of this to hold Tyler’s school accountable in making sure he doesn’t fall through the cracks, like he has before. 

“The fact that we have to hire an advocate to get what our child requires for his education is a terrible process, because at this point, if we didn’t have the resources to hire one, where would he be?” Carla Scott said. 

After learning about special education advocates, the family hired Cheryl Poe, founder of Advocating 4 Kids, an organization that centers on supporting Black and brown families of children with disabilities. 

Poe began to help the family by discussing the needs and academic goals of Tyler with school officials at Individualized Education Plan meetings, which are required by the federal government for students with disabilities. She also taught them what rights they had as parents under the Individuals with Disabilities Education Act, a federal law known as IDEA.

“The system is set up and feels like students with disabilities are more of a nuisance or a problem [rather] than figuring out how to integrate into educational settings,” said Poe, who was diagnosed with ADHD at age 20 while in college. She also experienced the system as a mother with two sons with disabilities, who are now 25 and 28.

With Poe’s help, the Scotts learned Tyler demonstrated signs to school staff that he should’ve been evaluated for disabilities but wasn’t. They also found out that officials were not adhering to his IEP plan and they weren’t collecting data about his educational progress — instead, they were passing him through classwork. 

“He was at a first-grade reading level in the third grade,” Carla Scott said. 

Public schools are required by federal law to test children for disabilities if it’s suspected they have one. 

Although the Scotts had been asking for help from school staff for years, they said they felt as if the school system was taking advantage of their lack of understanding. 

That all changed after they hired Poe. 

“She was able to see all the holes within the IEP. As parents, we don’t know what an IEP is supposed to look like,” Carla Scott said. 

Thanks to Poe, the couple was able to hold school administrators accountable for their lack of action. But it also angered Carla Scott to see the shift in attitude.

“All the questions from the beginning of the year, before she came, that we were beating our heads against the bricks to say, ‘Is it anything that could be better?’ All of a sudden, we’re getting all the answers. ‘Well, yeah, we can do this. We could do that. We got this, we had that,’” Carla Scott said.   

In Louisiana, Corhonda Corley, a Black mom of a son with autism and epilepsy, said for her, navigating the education system felt like an “extreme roller coaster ride.” 

“Why aren’t your nurses having conversations with us, parents, and telling us about resources and stuff that’s available. You have a guidance counselor here, but your guidance counselor is not guiding us,” said Corley, who later used her experience to help students throughout her state. 

“The ghosts of slavery” in the classroom

Education experts say those feelings of doubt, mistrust, helplessness and an overall lack of care in the education of Black students, especially those with disabilities, isn’t new but is widespread. 

Imari Ventura, a speech pathologist, said school leaders need to pay more attention to how evaluations are constructed to diagnose disabilities and provide support. 

“There needs to be continuous training on multicultural, multilingual evaluations,” said Ventura, who is the founder of Communication Resources, which offers parent coaching in New York and Connecticut. “When the child is not [taught] standard American English, not white, and their culture is not ‘the pig on the farm’ and ‘the cow’. When they’re outside of that, tests have less and less value. There have to be other supplemental ways to do that.”

Experts say that disabilities have sometimes been used as a justification to punish and criminalize Black students. 

“The ghost of slavery lingers in every parent-teacher conversation, every time a parent has to pick a nursery school for that child, go to college, and even graduate school. That ghost of slavery and racism is literally in the room,” said Dara Baldwin, 55, a disability justice activist and former national director of the Center for Disability Rights in Washington, D.C.  

Baldwin, like many others in the disability justice field, have called out the lack of attention given to communities of color as they navigate the education system. 

“In disability rights work, the only thing that is important is your disability,” Baldwin said. “When young Black and Brown folks are coming specifically here to D.C., but around the country, and entering the movement and saying, ‘I’m Black, I’m a woman, I’m gay, I’m queer, I’m an immigrant, I’m formerly incarcerated.’ They look at you and say, ‘Well, that’s not us.”

The lack of race in conversations about disabilities can result in interactions filled with microaggressions, intimidation, and gaslighting for students and parents of color, Baldwin and other experts said. 

Baldwin added that a Trump administration will likely intensify existing challenges. 

“Our fear should not be, ‘Oh my god, he wants to close the Department of Ed,’” Baldwin said. “It should be, ‘What are you going to do to make sure this doesn’t happen.’”

In Virginia, where the Scotts and Poe live, school officials refer more children with disabilities to its court system than any other state.

“Advocacy is more so protecting our children from an educational system that doesn’t respect them, that doesn’t want them there, and that doesn’t really know how to educate them appropriately,” said Poe, adding that the frustration and lack of care that Black families receive in education is by design. 

Poe is also neurodivergent — a nonmedical term to describe those with different brain processes. She said navigating life with a hidden disability has taught her how to relate to the families and children that need her help.

“I do this because I know what your child is experiencing,” Poe told Capital B. 

Documenting all conversations with school staff is especially important, she said, as the Trump administration continues to announce possible changes that could impact students with disabilities. Poe helps parents understand that they have federally guaranteed rights under the Individuals with Disabilities Education Act, which was enacted by Congress. 

“Congress is the one that would have to say ‘OK, we’re no longer going to provide that Act for people with disabilities’ and I don’t think that’s ever going to happen,” Poe told Capital B. 

In Detroit, Sharon Kelso said she is concerned about the future of public education. 

Nearly 7,000 students, or 14% of the 48,476 students in the district, have a disability, according to 2024 state data.  

The 75-year-old grandmother, who is raising her niece’s son, Melvin, who has a learning disability, said people need to create and strengthen community bonds especially as the Trump administration dismantles education policy and student protections.

“If people don’t continue to fight within the system that we’re in, because we are able to fight, then the system will never be good for these children, for all of them,” Kelso said.

“The system is set up and feels like students with disabilities are more of a nuisance or a problem [rather] than figuring out how to integrate into educational settings.”
— Cheryl Poe, founder of Advocating 4 Kids

In Holmes County, Mississippi, Ellen Reddy, 71, has been fighting for education policy, like ending the use of corporal punishment in schools, for over 20 years. When she thinks about the changes the Trump administration will bring, she gets butterflies in her stomach. 

“I do know that as a people, we’ve faced harder times than these,” Reddy said. “No matter what the fallout from all of this is, we’ve got to show up. We got to speak truth to power. We have to keep advocating for our children, because we leave a legacy.”

Baldwin, who has helped strengthen disability justice through national legislation, has seen a shift toward acceptance and understanding of disabilities within local Black communities, but said more action must be taken. 

“We need parent action networks that are run by Black, brown families,” she said. “There has to be some way to connect these black families in a national way.” Baldwin added that one group, Autism in Black, is a great example. 

And as everyone looks ahead to what the next four years will bring, Carla and Byron Scott said they are bracing themselves for what may come. 

“You don’t want children of today not getting the education they need,” Byron Scott said. “Some of these same children are going to be the elected officials of tomorrow.”

For now, the Scotts are ready to apply everything they’ve learned from their experience with the school system to help their youngest son, Kevin, if he needs it. They said the 9-year-old was diagnosed with ADHD and they are tracking his progress. 

“We have more awareness, we have more understanding of what we’re looking at, and what information we’re getting fed back,” Carla Scott said. “If there’s an alarm to be raised, we’re throwing it.”

This story has been updated.

Jewél Jackson is a freelance contributor who reports on youth, culture and society.