Parents of special needs kids face hurdles with school districts

(The Sentinel) – Parents of children with special needs (intellectual or developmental disabilities) do not just face long waitlists to get services from the State of Kansas, but also often face daunting hurdles trying to obtain services from their local school districts. These are services districts are often legally bound to provide.

Take, for example, Jennifer Peros’s 6-year-old daughter. Natalie has Down syndrome, and her parents have had to fight the Wamego school district in order to get services.

“My child is in public school right now,” Peros said. “We put her in preschool (last school year). That preschool teacher is phenomenal. I trust her. She’s excellent with my daughter, and so we put her back in preschool at the end of the year. And they said, ‘Well, you know, now she’d go on to kindergarten.’ I was like, ‘No, she’s nowhere near kindergarten.’”

Peros said so far, so good, but at the meeting to set goals for Natalie’s “Individualized Education Plan” — or IEP — in April of this year, the district again pushed to move the child on to kindergarten.

Peros said that while she signed the IEP, she stressed this was very new to her, and she was still not sure about enrolling her daughter in kindergarten, as she is not toilet trained and cannot even comb her own hair.

“I thought, okay, we’re just going to heavily focus on therapy this year, so we’re going to do the preschool program three days a week, and then we’re going to do extra one-on-one visits for her different therapies,” Peros said. “This was my decision, my husband’s and my, that we’re going to focus on developmental therapy because that’s where Natalie is at.”

But it didn’t take long for the district to start pressuring Peros to enroll Natalie.

“Well, we told the school that was our decision, and I got a call from the principal, and he said, ‘I want you to know that your clock starts August 14 for truancy, unless you turn in that she is enrolled in an accredited school,’” Peros said, adding she was then told she could register herself as a homeschooling parent, “and then turn in the program that we’re going to use and make sure that we do like these reportings and stuff. He also said that she would no longer be qualified or be able to get IEPs.”

While parents in Kansas who choose to homeschool their children need only register with the state and provide a written withdrawal notice to the district, and do not have to provide the district with a curriculum or progress reports, state law has a “peculiarity” regarding homeschoolers with special needs.

According to the Home School Legal Defense Association, homeschools in Kansas are legally considered private schools, but the definition as it applies to special education is peculiar. Private school students have a right to access publicly funded special education services under the law. Because of the law’s peculiarity, the same is not true for homeschool students. Yet parents must still provide those services to their child when they leave the public school system.

According to the Disability Rights Center of Kansas, districts are not required to provide services to students with special needs, but they are not prevented from doing so. Moreover, parents can partially enroll their children.

“If your child is identified as a student with a disability, the public school has to provide a free appropriate public education (FAPE),” DRCK wrote on their website. “However, you have to enroll your child in public school to receive it. Families who homeschool can partially enroll in a district for certain services or classes.”

Gardner-Edgerton district fights parent on special needs

Another parent, Samantha Brandt, is in the middle of a dispute with the Gardner-Edgerton school district over care of her medically fragile daughter Macy.

Macy is 11 and has a rare condition called “Rett Syndrome, a rare genetic neurodevelopmental disorder that affects brain development, leading to severe cognitive, verbal, and motor regression. It primarily impacts females and typically becomes noticeable after an initial period of normal early development.

As a result, Macy requires 24-hour care from a Licensed Practical Nurse or Patient Care Associate familiar with her needs. Macy’s IEP had been implemented using a long-standing agency LPN/private duty nurse and PCA team, giving her continuity of care from night through the school day.

As Macy transitioned to a new school building, the district announced a shift away from agency nurses to district-employed RNs and refused to allow Macy’s established agency nurse or PCA to continue providing care at school, despite the long precedent and specialist letters of medical necessity supporting continuity of care.

“This has been occurring, and that precedent has been set since she was in kindergarten,” Brandt said. “She’s now in fifth grade. In Gardner, fifth grade goes to a new school; they go to middle school. Whole new team, whole new staff, whole new everything. We had a transition meeting in February, and in February we were not told anything was happening with nursing.”

Brandt said shortly after the IEP meeting, she “caught wind” that the district was no longer going to use the agency nurses.

“I said, ‘Whoa, whoa, whoa! Wait a minute,’” Brandt said. “‘So, the nurses and PCAs that my daughter has, they know her intimately. I don’t understand. Can you show me clinical data and show me data where this is in the best interest of her, and it’s not just a staffing and financial decision?’”

Brandt said she was told they didn’t have the data, but the district can staff whom they choose.

“I said, ‘I understand you can staff who you want. But this isn’t safe for her; let me show you why,’” Brandt said. “So I brought a neurologist and top Rett specialist in the country. Wrote a letter of medical necessity for her to continue with her private duty nurse because of continuum of care and her seizures.”

Brandt is continuing to try to convince the district to provide the services her daughter needs while moving her to a hybrid setup.

“Macy is now dual enrolled in a virtual school because I want her to get those academics, and I enrolled her in the school district brick-and-mortar for electives,” Brandt said. “They are still saying ‘absolutely not; no outside people, only district people.’”

Mounting special education complaints

As The Sentinel has previously reported, these kinds of issues are not uncommon for parents of children with special needs. Late last year, the Manhattan-Ogden district changed policies to prevent outside Applied Behavior Analysis therapists from working with autistic students within the district.

Indeed, the Kansas State Department of Education has seen a significant uptick in formal special education — or “SPED” — complaints since 2023.

According to data acquired by The Sentinel through a request under the Kansas Open Records Act, in fiscal year 2023 there were 86 complaints filed, 72% of which were investigated; by FY 2026, that number had doubled to 172, and 76% were investigated.

Education attorney says more funding is not the answer

The education establishment, predictably, has been arguing the SPED crisis is a result of “underfunding” special education and — as The Sentinel reported earlier this year — some districts are gearing up for another lawsuit.

Attorney Kathleen Urbom — who has been specializing in education law for 40 years — said more funding is not the issue.

“When you look at the huge number of dollars, and then you look at the budgets for these districts, it is not because they don’t have enough money,” Urbom said. “It is because they are not spending the money where it counts, and it counts in the classroom. That means teachers, paraprofessionals, more teachers that are trained, and those are the kinds of things that make a difference. More administrators do not make an educational difference; they simply make a budget difference, and they take dollars away from what actually counts.”