Advocating for your K-12 child with disabilities

Written by

Amye Archer, MFA

Last updated: 11/30/2023

Father and son sit at a table going over paperwork

When I was six, surgery helped end the earaches I’d been having since birth. But the damage was done: I’d suffered 25% hearing loss in my left ear and 35% in my right.

I made it through school despite my hearing loss, but it was a struggle. I was always asking for the volume to be turned up on a film or to borrow a classmate’s notes so I could see what I’d missed. It took teaching a room full of masked students in 2021 to make me realize how much I’d come to depend on lip reading.

If my mother had known about resources offered by our school district to help accommodate my disability, my experience might have been very different. Despite passage in the late 1970s of the Individuals with Disabilities Education Act (IDEA), a federal law that guarantees a free appropriate public education to eligible children, many parents aren’t aware of all the resources available for their K-12 kids who have physical or emotional challenges.¹

To help close this gap, here’s an introduction to the types of accommodations that may be accessible to your family.

What does “accommodations” mean?

Depending on your child’s diagnosis, they may be eligible for either a 504 plan or an individualized education program (IEP).² The accommodations or modifications provided by these plans vary by school district, but they’re all designed to lower or remove barriers to learning.

Common barriers and accommodations include:

The way information is presented: For example, a student with hearing loss may find it difficult to hear a lecture or an audio presentation. A common accommodation would be to provide printed materials to accompany the lesson.
The way a student is required to respond: A student may struggle physically with writing, in which case they may be allowed to get a copy of the day’s notes from a designated classmate. If they have a hard time taking standardized tests, there may be an option for verbal assessment.
The characteristics of the setting: A student may become easily distracted by a busy classroom or loud surroundings, so one accommodation would be to allow them to take exams in a designated testing center where distractions are removed.
The timing and scheduling of instruction: A student may have difficulty sitting for long periods or struggle with later class times. In this case, an accommodation would be to attend shorter classes or have their schedule rearranged for classes earlier in the day.

Overcoming a history of stigma

Given the way students with disabilities have historically been treated, some parents may hesitate to ask for help. Past tactics have included putting students with disabilities in their own classrooms, on their own learning tracks, and sometimes even in separate transportation to and from school. This is rarely the case anymore. Parents can feel much more secure knowing that at many schools, inclusion and universal design have become essential to the classroom.³ That said: If you’re concerned about your child’s privacy, make sure you ask for a detailed plan of action from the IEP team or school district officials.

Where to begin

If you think your child may be running into a roadblock in their learning, the first thing you should do is seek out professional assessment and diagnosis. This can come from a variety of sources, according to Sharon Saline, PsyD, a psychologist and the author of “What Your ADHD Child Wishes You Knew.”

In her book, Saline suggests several possible starting points for a diagnosis, such as:

Your school district: Because each school handles requests differently, it’s important to contact the right person at your child’s school. If you’re unsure, Saline says, “the guidance office is a place to start. You can say, ‘My child’s been diagnosed with this and this, and I want to set up a meeting in my district.’” The guidance counselor can then point you in the right direction.
Your pediatrician or care provider: Chances are your pediatrician can help you access testing that can lead to a diagnosis. Check with your insurance company, Saline says. Many will pay for testing if your child is referred by a primary care physician.
A psychologist or a licensed family therapist: If you and/or your child are already in therapy, you may want to start there. Often your therapist can either contact the school on your behalf or help you find appropriate services. Browse our directory to find a family therapist near you.

Although any of these options may result in a diagnosis, Saline recommends starting with the school district. “Schools usually want more information,” she says. “So if you have a diagnosis and come to them, they will probably want to do their own testing anyway.”

What to do if your school district is unresponsive

Since the start of the COVID-19 pandemic, mental health concerns have skyrocketed in school districts across the country. Your special education department might be among those affected. “In districts where people are overwhelmed, you have to think outside the box,” Saline says. Possibilities include:

Getting a second opinion: If your child doesn’t meet the criteria for accommodations at first, don’t give up. “You know your child better than anyone,” Saline says. “If you know in your gut something is wrong, persist.” She recommends bringing in a therapist or a psychologist for a second opinion—she’s had a lot of success helping families in this way.
Bringing in outside help: “If you’re not getting what you want, then you need to go outside the system and bring someone into your situation,” says Saline. That person could be an educational advocate, a therapist, or a social worker. The Council of Parent Attorneys and Advocates has a searchable database for each state.⁴
Connecting with your state’s Parent Training and Information Center (PTI): The IDEA requires each state to have at least one PTI.⁵ Sometimes called “community centers” or “learning centers,” PTIs are free to use, can help parents navigate special education law, and may be able to help families communicate with their school districts.

What comes after K-12?

Your legal role as your child’s advocate ends when they turn 18, but parenting is a lifelong journey. How do you encourage your children to advocate for themselves as you take a step back? Whether your child is pursuing higher education or entering the workforce, it’s important they have the tools they need to dismantle their own barriers.

Teens entering college

Colleges and universities don’t always offer the same kinds of programs as K-12 schools, and many require testing and paperwork beyond an existing 504 plan or IEP. According to Christina Lenway, disabilities services coordinator for the University of Scranton, parents and college students should be aware of the following differences:

Students must seek out and ask for accommodations. When your child gets to campus, they should find the disabilities services office. “It may be called accessibility services, disability services, or something along those lines,” Lenway says. “They’ll want to ask if they need anything other than [their prior] IEP or 504. Are they going to need diagnostic testing?”
Many valuable resources are available. In addition to testing centers and other accommodations, most schools offer educational coaching, which Lenway says is “a great way to work with students on planning, time management, organization, and other soft skills.”
Look for mental health resources on campus. These may be housed in the counseling department or student services. Lenway recommends that students look for group sessions “where they can work on intra- and interpersonal skills, as well as normalize any depression or anxiety they may be feeling.” There may also be groups and events focused on mindfulness, self-care, and other strategies for managing the stress of college.
Parents are not kept in the loop. Because of the Family Educational Rights and Privacy Act (FERPA), parents are not allowed access to their child’s school records unless the student grants it.⁶ Lenway offers this tip: “Just because your child gave permission to one office doesn’t mean that paperwork trickled down to disability services. If you want permission, ask the school if there’s a central office to visit.”

Helping your child connect with these resources is a great way to make sure they have the support they need before you step away from serving as their chief advocate.

Teens entering the workforce

If your child with disabilities plans to start working right after high school, they’re still entitled to protections under the law. Title 1 of the Americans with Disabilities Act of 1990 prohibits private employers, state and local governments, employment agencies, and labor unions from discriminating against qualified people with disabilities in hiring, firing, advancement, compensation, job training, and other privileges of employment.⁷ These protections extend to reasonable accommodations for employees with disabilities. The Job Accommodation Network (JAN) offers many resources for job seekers, from guidance on disclosing a disability to negotiating accommodations.⁸

Find a person who validates you and your child

Saline and Lenway both mentioned the importance of connecting with the right people in K-12 and higher education settings, and the Job Accommodation Network offers guidance on how to connect with a supportive person in your workplace. Relationships are essential to helping students with disabilities succeed, and I understand why firsthand.

During my conversation with Sharon Saline, I mentioned my hearing impairment and how it’s affected my life. After listening to my story, she paused and said how sorry she was that I’d been overlooked in this way as a child. In that moment, I teared up. All these years later, her validation made such an impact.

That’s what every parent wants for our kids: someone to help them feel seen and heard when they need it most. I hope these resources lead you to that person for your family.

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About the author

Amye Archer, MFA, is the author of “Fat Girl, Skinny” and the coeditor of “If I Don’t Make It, I Love You: Survivors in the Aftermath of School Shootings,” and her work has appeared in Creative Nonfiction magazine, Longreads, Brevity, and more. Her podcast, “Gen X, This Is Why,” reexamines media from the ’70s and ’80s. She holds a Master of Fine Arts in creative nonfiction and lives with her husband, twin daughters, and various pets in Pennsylvania.