When Breska Larisma learned her nearly 3-year-old daughter was on the autism spectrum, her family was swept into an entirely unfamiliar world.
“We didn’t know anything about that stuff,” Larisma said. “We had not met anyone else who was on the spectrum, and so it was a big shock.”
Larisma’s daughter was set up with services in Danbury, Connecticut. The family moved to the Lake Norman area in 2016, planning to enroll her in pre-K in the Iredell-Statesville School District.
But they found that simply continuing the same services she had received in Connecticut was more complicated than they’d expected. While all schools are required to provide disability services, they often vary in how they meet those obligations, which can lead to confusion.
“We thought it was going to be, you know, a continuation of what we have gone through in Danbury,” Larisma said. “So being in that shock, and not knowing enough about everything, just knowing that I’m supposed to advocate for my kid, but I don’t know enough to advocate — I felt very weak.”
Between things like IEPs, 504s, FAPE and IDEA, the special education world is a mix of acronyms, rules, regulations — and at times, disputes between families and educators over whether kids are receiving the services they’re owed.
That’s why every state is required by federal law to have at least one federally funded Parent Training and Information Center, or PTI. It’s a free resource center that teaches families how to understand the system.
In North Carolina, that’s the Exceptional Children’s Assistance Center, or ECAC, in Davidson. Larisma called the group. Aimee Combs, now ECAC’s executive director, accompanied her to the next meeting with district officials, and together they worked out a plan that fit her daughter's needs.
“I’ll tell you, that meeting was the best thing that happened,” Larisma said. “Because I had support. She was helping me. She was educating me.”
The Trump administration’s plans to shutter the federal Department of Education has sparked concern about what might happen to special education funding, including this program.
“Everything that we do for families is at no cost,” Combs said. “And so most of our day is spent providing individual assistance to families that have, you know, experiencing conflict, or there’s confusion about what their rights are, what options they may have available to them or what resources may be available to them.”
PTI centers differ from other advocacy organizations in that they must serve the full range of disabilities. They are also required by law to have a board that consists mostly of parents of children with disabilities. Combs says 12 of ECAC’s 13 board members qualify. Combs said all of the staff they have are also parents of children with disabilities.
“I think that creates a layer of trust with the families that we’re serving — to kind of say, ‘Hey, we’ve either been there, we’ve done that or are currently experiencing what you’re experiencing,’” Combs said.
ECAC fields parent calls and emails. The organization also hosts webinars and posts informational videos. Staff might also help families prepare for meetings with school administrators — or, in some cases like Larisma’s, attend them.
Combs notes that the goal isn’t to advocate for parents, but rather to explain how the system works so they can advocate for themselves. It’s more like a translation service — helping parents sift through the legalese and web of terminology to understand how to best support their kids.
Sometimes that means explaining why a school might withhold a certain service — there are times when it’s in the child’s best interest.
“Sometimes — and I can say this as a parent of a child with a disability — we want all the things,” Combs said. “And sometimes ‘all the things’ may actually hinder our child’s independence.”
The key is to do everything possible to encourage families to maintain a working relationship with their school administrators — which means encouraging them to work with schools before escalating to formal complaint processes.
The group provided individual assistance to nearly 4,000 families last year and had almost 29,000 interactions with North Carolina families, youth and professionals.
The vast majority of ECAC’s funding comes from grants and much of it comes from the federal government. Roughly 45% of its $1.8 million budget comes from the Department of Education’s grant for PTIs. The organization also receives a significant grant from the Department of Health and Human Services.
“We've got some other grants that are state contracts, but at the end of the day, are funneled from the feds and so it makes it a little scary for us as we're, you know, reading all the headlines and trying to make heads or tails and say, well, what's true, what's accurate, and then how does it affect us and how does it affect the families?” Combs said.
So far, there has been no indication of whether PTIs will be impacted by the Trump administration’s efforts to shutter the Department of Education. Trump has said special education will shift to the Department of Health and Human Services, though the specifics of that plan remain unclear. The Department of Education did not respond to WFAE’s request for comment.
Larisma and her family have continued to rely on ECAC — including just last month, when her son was diagnosed with ADHD. She homeschools her children now, so many of the headlines about the Department of Education haven’t scared her. But she does worry about a world without resources like ECAC, which help families navigate the labyrinth of autism and other disabilities.
“It's lonely,” Larisma said. “It's confusing because we didn't know anything about it. Nothing. It was horrible — absolutely horrible. Now, after 10 years of being in it, my tone of voice is a little calmer than it was, but it was...We didn’t know what to do. We were very, very lost.”
On one hand, Combs says PTI centers are written into statute, so it’s hard to imagine a move to eliminate the program.
But she points to something else that’s also written into statute: the federal Department of Education.
