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As a parent of children with learning disabilities, a researcher studying family-school partnerships and a board member of the National Center for Learning Disabilities, I’ve spent a lot of time listening to families describe their experiences navigating special education.

The details vary, but one theme emerges repeatedly: Obtaining support often depends less on a child’s needs than on a parent’s ability to understand and navigate complex education laws and systems, ask the right questions and persist when answers are unclear.

Last winter, NCLD convened a focus group of Family Leadership Council members representing families across the country. Despite differences in geography and school systems, parents described remarkably similar experiences, including opaque processes, inconsistent communication and a system that left them feeling responsible for navigating special education on behalf of their children. One participant described it as “playing a game I didn’t have the rules to.”

Parents shouldn鈥檛 be required to act as case managers

Nearly every parent described being handed forms to sign with little explanation. One mother recalled sitting in meetings 鈥渨ith people who had language I didn鈥檛 understand so I couldn鈥檛 respond in an educated way.鈥� Another parent spent hours building her own data presentations to prove her child wasn鈥檛 making progress 鈥� work that felt necessary to ensure someone was monitoring it. 

In special education, families cannot be true partners when they do not understand the rules, processes or terminology shaping decisions about their child鈥檚 education. Collaboration requires transparency. Families cannot participate as equal partners when they lack clear information about how and why decisions are being made.  

When schools rely on parents to push for services using sophisticated advocacy skills, that widens inequities for children whose caregivers lack time, resources or English proficiency. has consistently documented disparities in special education access and parent participation based on socioeconomic resources, language proficiency and knowledge of school systems.

Many children in the focus group had more than one disability. Yet parents repeatedly described schools treating a single diagnosis as a catch-all explanation for every challenge a child faced. One mother shared that her district insisted her son鈥檚 autism accounted for all his learning needs, despite clear signs of dyslexia. Another parent鈥檚 child was initially labeled with a 鈥減rocessing disorder,鈥� only to later receive diagnoses of dyslexia, ADHD and anxiety after an outside evaluation. Their experiences reflect a broader reality: Learning disabilities with conditions such as ADHD, autism spectrum disorder and anxiety disorders 鈥� making comprehensive evaluation essential.聽

Relying on a single diagnosis delays identification, intervention and learning. Meanwhile, the child continues to struggle academically, emotionally and socially.

Outside evaluations and parent advocacy shouldn鈥檛 be the only path to clarity

Five of the 14 children discussed in the focus group received outside evaluations because parents felt their concerns were not being fully heard or addressed. These evaluations were expensive, time-consuming and often the only way families could get answers. Parents described the relief of finally understanding what was going on 鈥� and the frustration that it took so much effort to get there.

When schools resist diagnoses or updating evaluations, families with resources find workarounds, while families without resources have no choice but to wait. And waiting has consequences, including widening skill gaps, increased anxiety, and a growing sense of failure in children who are trying their hardest. They are not lazy or unintelligent; they鈥檙e struggling with needs that have not yet been adequately identified or addressed.聽

One of the most powerful themes was how many parents grew into advocates not just for their own children, but for others. Several now work in organizations supporting families navigating the special education system. They do this because they know “what happens when children don’t get the services they need.” They have witnessed the consequences firsthand.

But their stories raise an important question: Why should families have to become advocates simply to secure appropriate support? Parent advocacy is valuable, but it should be a safeguard when systems fail, not the force that makes them work.

What schools can do differently starting now: 

The stories parents shared point to clear, actionable steps schools can take to make early learning disability identification more transparent, equitable and respectful of families鈥� experiences. 

• Communicating in plain language. Parents need to understand evaluations, timelines, and their rights before making decisions.

• Evaluating the whole child. One diagnosis should not prevent further assessment when concerns remain.

• Make progress transparent. Families should receive regular, understandable updates about goals, growth and next steps.

The parents in NCLD’s focus group were persistent, resourceful and determined. Many eventually secured the services their children needed. But children should not receive different opportunities simply because one family knows how to navigate special education while another does not. 

Advocacy matters. Yet it should function as a safeguard, not a requirement. Schools cannot eliminate every obstacle families face, but they can ensure that access to services depends on student needs rather than parental advocacy skills. That’s not just good practice. It’s a matter of educational equity.

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