Education policy changes could impact students with PI

During his early childhood education, Harrison Huguenin, diagnosed with autism and a primary immunodeficiency (PI), attended a school for children with developmental disabilities. There, he learned self-care skills like using the bathroom, washing his hands, and swallowing pills.

For most of his years in public school, Harrison received a good education. His Individualized Education Plan (IEP), a legal document that outlines special education services, helped him meet developmental goals and communicate better. As part of the accommodations for his PI, the IEP offered him instruction when he stayed home sick, allowed him to miss school if classmates were ill, and required the nurse to check in regularly with updates about schoolwide illnesses.

“The school system provided a rigorous program for him that taught him a lot of skills that he still uses today and that we still rely on. Before starting school, Harrison lost almost all of his words, and that caused a lot of frustration for him. Teaching him how to communicate again was key to his happiness and was our number one objective for him,” said Marc Huguenin.

Harrison, now 23, earned his high school diploma last year, thanks in part to services required by the Individuals with Disabilities Act (IDEA). The IDEA states children with disabilities must receive a free, appropriate public education that meets their needs.

Many children with PI seek protection under the IDEA because they need accommodations to help them make up missed schoolwork when they are absent for long periods. A student with PI will most likely have a 504 plan which allows for accommodations but is not considered special education. If a child has other disabilities along with a PI, then they will have an IEP.

Recent policy changes have raised concerns among families and advocates about the future of federal special education safeguards. An executive order signed in March aims to restructure the U.S. Department of Education, which works with states to provide special education services, among other functions.

The proposed changes would shift more control of education to the states. But the states—and parents—rely on the federal government for many aspects of education operations, like enforcement of special education laws and disbursement of special education funds. Advocates worry that without a centralized Department of Education, parents may not be able to make an appeal or file a complaint if a school isn’t enforcing an IEP or adhering to a 504 plan, for example.

The department houses several offices, two of which are critical for helping students with disabilities: the Office for Special Education and Rehabilitative Services (OSERS) and the Office for Civil Rights (OCR).

OSERS helps parents understand their rights related to their child’s IEP. By law, school officials must include parents in the creation and implementation of IEPs. If schools violate this process, parents can appeal to OSERS for help. OSERS also makes sure that states comply with IDEA laws and oversees the Office of Special Education Programs (OSEP), which disburses funds for special education.

OCR works in tandem with OSERS but focuses more on school system compliance with 504 plans for students. Less comprehensive than an IEP but federally mandated, 504 plans are created jointly between parents and school officials and provide accommodations and equal access to students.

The restructuring of the Department of Education has raised questions about accessibility to these offices and services. The federal government reduced the Department of Education staff from 4,000 to 2,000 employees, significantly impacting special education offices. While employees were reinstated as part of the reopening of the federal government, it remains to be seen if those positions will be retained in 2026.

Additionally, some Department of Education offices and programs have been placed under the operation of other federal agencies.

Advocates worry that reduced staffing and organizational restructuring may create additional barriers and confusion when parents need help accessing special education services.

The Huguenins appreciated the services Harrison received as a younger child, but they said adjusting his IEP as he entered his later teen years proved challenging. The public school system refused to fund a full-time aide for Harrison. The Huguenins ended up paying for his support staff, and for legal bills they accrued in their efforts to increase their son’s services.

“If it was hard on families and the students during that time, I believe it will be much much worse with the current situation,” said Lisa Huguenin of changes within the Department of Education.

Making IDEA funds less accessible to families leads to inequalities in education, said Marc Huguenin. Those who can afford services for their child will pay out of pocket, while those lacking funds won’t receive help.

“The bottom line is that with a federal Department of Education, all children have the same treatment. The concept of IDEA is that you have this universal protection. Now, if you force that down to the state level, then for people who have switched jobs or need to move from one state to another, there may not be consistency in services,” he said.

“We’ve met some people who tell us it’s not as good in their state as it is in ours. There are already pretty significant differences, and taking away the guidance at the federal level will make it even worse. You will really see an impact in some states. It's probably hard for parents to appreciate that until they're forced into a situation where they have to move, and then they're just in a disaster.”

A special education advocate, Marc Huguenin said some parents of children with special needs lack the time and energy to protest the dismantling of the Department of Education. They are too busy working and taking care of their families.

“Unfortunately, the parents don't know what's going to hit them until it hits them. For a lot of people, it's too stressful, so they're not even paying attention,” said Huguenin. “But the problem is when special education gets to that place, it’s going to be 1,000 times more stressful, and that’s the sad thing.”