Navigating the school system with a child who has a disability can be daunting — even for parents who consider themselves seasoned veterans after years of pushing for accommodations and services.

Federal law guarantees that all children in the U.S. receive a “free appropriate public education” under the Individuals with Disabilities Education Act. That means educational services and support, including evaluations to determine whether a child has a disability, do not cost parents anything. It is designed specifically for a child from preschool through 12th grade, with instruction outlined in an individualized education program.

“The concept of free and appropriate public education gets lost a lot,” said Meredith Kroot, a parent advocate in Chicago. “The education is supposed to fit their needs. The parent is not required to take only what the school offers. That’s not a concept the average parent is aware of.”

The 504 plan

A 504 plan, which is different from an individualized education program, is covered by another law and does not include specialized education. But it, too, outlines the accommodations, modifications and services that students with disabilities receive. Such accommodations could be extra test time or access to fidgets and sensory breaks.

Private schools can provide individualized education plans and 504 plans but are not obligated to — something Maria Guerrero learned when navigating a Catholic school in Chicago.

Two of her children, one with an individualized education plan and one with a 504 plan, eventually transferred to a charter school, which is obligated to provide special education services like any other public school.

Once her daughter had accommodations for a learning disability, Guerrero noticed a change.

“She went from the little girl who hated school, considered herself dumb — her word — to a thriving little girl who loved to learn, found her confidence and learned to advocate for herself.”

Her daughter is now in college.

The State of Illinois

Illinois students who receive special education services will start the school year with an important change in state regulations that give non-native English speakers access to interpreters and translated documents.

The Illinois State Board of Education now requires school districts to provide translations of all vital documents—including consents for evaluations and progress reports — in the ten most common languages in the state’s schools. The top three languages are Spanish, Polish and Urdu.

Parents also have a right to request an interpreter at meetings, and if a school district must use an automated translation program, a qualified individual is required to review and edit the resulting translation for accuracy.

The changes, which formally went into effect in February, also require districts to keep track of translation requests —and when and how they are provided.

Families “are now happier because the interpretation is done properly through a qualified interpreter,” said Zoubida Pasha, a bilingual parent trainer and advocate at the Chicago-based Family Resource Center on Disabilities.

Beyond translation for non-native English speakers, Pasha said it’s important for parents to understand what services are being offered to their children with specialized needs — and what rights they have under federal law.

“We are given this huge document, and we don’t know what it means,” Pasha said. “The school has an obligation to explain to the parent about the minutes, and the provisions of the services, even if the parents are not asking. The parent must be informed on the compliance of the IEP.”

Mo Buti, an education advocate and former director of autism and intellectual disabilities for Chicago Public Schools, offered these tips for parents navigating special education in Illinois:

• Make sure to know the names and contacts of all service providers. This is sometimes the only way parents know if their child is getting the services outlined in their individualized education programs. Service providers include speech-language pathologists, occupational therapists and social workers.
• Keep good communication with all service providers. 
• Prior to the individualized education program meeting, ask for the related service logs.
• Make sure you get the individualized education program draft three full days before your child’s meeting.
• The individualized education program scheduled date must be at a mutually agreed upon time and date. If what the school proposes does not work, you have the right to ask for an alternative time and date.
• Ask to meet the staff at the beginning of the school year.
• Ask for your child’s specific schedule at the beginning of the school year, including subject, room number, teacher name, any paraprofessional’s name and all therapies times and days.
• In the state of Illinois, a signature on the individualized education program is for attendance purposes only. So if you disagree with what is in an individualized education program, parents have three options. The first is to ask to reconvene the meeting without finishing that day. The second is to write a dissenting opinion to be attached to the individualized education program, and the third is to know the procedural safeguard.

“You can ask for a mediation meeting, file a state complaint or file due process,” Buti said. “In some cases, you might do all three.”

Like other advocates, Pasha advised parents to get everything in writing and ask for all the data used to formulate an educational plan.

“I’m big on collecting data and statistics to show what the child’s needs are,” she said. “Everything should be outcome-oriented and measured. This is critically important.”

She said parents should push back when districts try to deny services based on a lack of resources, including available teachers.

“We have heard we don’t have the staff. We don’t have the budget. We don’t have this,” she said. “This is not only Chicago. I’m dealing with parents from different districts.”

But that is not the family’s concern. It is up to the school district to figure it out, Pasha added. “The school has an obligation,” she said.

Another important component — if not the most important — is that children are entitled under the law to learn in the least restrictive environment, meaning students who get special education have a right to be in a general education classroom with their peers to the maximum extent possible.

Chicago Public Schools

When Kroot’s daughter was in kindergarten, she noticed that the little girl struggled with rhyming words and wasn’t learning to read as easily as her older brother.

The kindergarten teacher dismissed her concerns, telling Kroot that her daughter would catch up by second grade. But she didn’t. By fourth grade, Kroot noticed that her daughter, at home for remote learning, couldn’t read or understand what she was reading.

The experience taught Kroot a lesson that she now shares with other parents.

“The gut is always right,” she said. “Even though that’s qualitative, that’s something that gets lost when your school is running you in your circles. What parents need to be armed with is their own view. They can’t just take what the school tells them at face value.”

That applies even beyond dyslexia, a learning disability that impacts a person’s reading, spelling and writing, Kroot said.

A CPS Family Dyslexia Collaborative launched in 2021 pushed for a more science-based, multisensory approach to teaching reading.

CPS is in the midst of a push to train all special education teachers in the Wilson Reading System — which means parents should ask their schools which teachers are trained and how specifically students with disabilities who are not reading at grade level are being remediated.

There is no writing remediation, however, which affected Kroot’s son, who has dysgraphia, a neurological disorder specific to writing.

Kroot advised all CPS parents to be vigilant about asking for data, to bring in outside evaluations if families have private insurance — not all do — and to demand that schools set benchmarks to get students at grade level.

Anne-Marie Williams, a member of the family advisory board for the Office of Diverse Learner Supports and Services for Chicago Public Schools, said transportation, staffing and recovery services were all “huge” discussion points this year.

They likely will be again this upcoming school year.

She encouraged parents to get a diagnosis first — and know who has what job.

A lot of parents ask why the school cannot diagnose their child with attention-deficit hyperactivity disorder or autism, Williams said, not understanding there’s a difference between what the social worker or special education teacher is saying versus an official diagnosis.

“The school will never go off of their own paraprofessionals,” she said. “They only accept an official diagnosis. But also, I have to acknowledge this is a pretty privileged position to take. I can afford a lawyer and doctors, and anything else my kid needs, and can take time off to get these diagnoses. So ultimately, this does not help the poor, and there seems to be very little infrastructure to support them.”

Jackie Spinner is a Chicago-based journalist, filmmaker and professor at Columbia College Chicago. She is the mother of three boys who attend Chicago Public Schools.