The Challenges Of Identifying Disabilities Before Children Start School


The D.C. government is in the midst of a more than decade-long lawsuit about how to properly identify and provide services for preschool-age children with special needs.

The scrutiny of D.C.’s approach to complying with the federal Individuals with Disabilities Education Act (IDEA) may illuminate some of the challenges in identifying preschool-age children, many of whom aren’t in preschool. Low-income families, who encounter these issues more often due to exposure to toxins and other risk factors for disabilities, may not have consistent doctors or day care services to help identify disabilities or developmental delays. Even when kids do attend preschool, educators may not know what to look for.

IDEA requires that states identify and provide services to preschool-age children with disabilities. But the plaintiffs in the case, D.L. v. District of Columbia, say this system isn’t working in D.C. Between 2013 and 2014, the number of preschool-age children with individual education plans or IEPs, had a decline of over 15 percent. Between 2011 and 2014, there was a 19 percent decline in the number of D.C. children receiving special education services, the judge wrote in his opinion — an indication that the government isn’t doing its job. And although parents are supposed to be contacted 48 hours after a referral identifying whether a child needs services, in one-third of instances, parents weren’t notified in that time frame.

In May, a federal court sided with the plaintiffs and ruled that the city must take additional actions to identify and evaluate kids between the ages of 3 and 5. The city recently decided to appeal.


The IDEA Act, which passed more than four decades ago, serves 6.5 million children. Under the legislation, when kids are infants or toddlers, they can get what’s known as an Individualized Family Service Plan — which is geared toward helping their families meet their needs if they show signs of a developmental delay or disability.

But experts on IDEA Act implementation say there are a lot of barriers standing in the way. Because these kids aren’t required to be enrolled in preschool, it can be difficult for the government to connect with their parents. And some of these parents may not initiate the process because they struggle to identify the signs or don’t understand what their rights are.

Amaya Garcia, senior researcher for the education policy program at New America, first noticed potential issues with her son’s speech development when he was in pre-K back in 2012. Although she said she isn’t sure how other parents have experienced the process, when she decided to get him assessed, it took four months — a process that required her to take all of the initiative.

“I will say that the process was driven completely by me. I expressed my concerns about my son’s speech development at a parent-teacher conference,” Garcia told ThinkProgress. “The teacher thought he was fine, but agreed to refer him to Early Stages. I think parent advocacy is a huge part of this process and one that’s important to recognize. This is not simply a teacher-driven process. And it’s not an easy process to navigate.”

“It’s not an easy process to navigate.”

For those who aren’t as informed as Garcia on early childhood development, it can be even more challenging to navigate the process. Many parents may not even know that such early interventions exist.


Joyanna Smith, the ombudsman for public education with the D.C. State Board of Education, is a new parent who said she wouldn’t have known about the process at all if not for her job. And in her line of work, she sees a lot of other parents who aren’t sure about whether they trust themselves to recognize the signs.

“We still see families who say, ‘You know, you may be able to identify this, but what if your pediatrician doesn’t know and you go looking for information — and you’re trying to watch developmental milestones, but you’re not quite sure if what you’re seeing is actually a problem or if you need more support?’” Smith said.

Educators may also struggle to recognize the signs, especially in these early years. Seven out of 10 parents, educators, and members of the general public mistake learning disabilities for intellectual disabilities and autism, according to a 2014 survey from the National Center for Learning Disabilities. Educators may also have trouble identifying disabilities in children whose primary at-home language is not English.

As many as half of people surveyed thought that what people call “learning disabilities” are the result of laziness — showing remaining stigma around learning disabilities. That stigma may lead parents to avoid identifying possible disabilities. Parents surveyed said they assumed traits tied to learning disabilities in children ages 3 and 4 will go away and two in three were reluctant to ask about early intervention services.

CREDIT: Shutterstock
CREDIT: Shutterstock

Smith said one of the biggest challenges in D.C. is figuring out how to communicate with a transient population. She said that in Ward 7, Ward 8, and Ward 5 — which are generally more low-income neighborhoods — families said they didn’t have enough information on early intervention services. These families may not have access to a regular doctor, for example, which would make it more difficult for a pediatrician to spot inconsistencies in a child’s development.

“How do you keep in contact with this population when there is not that consistency in providers? They often need to see the same person multiple times in order to see whether this issue is not a thing or is an actual disability,” said Khadijah Williams, program associate with the Office of the Ombudsman with the D.C. State Board of Education.


But it’s important for parents in low-income neighborhoods to get these services early, especially because there are higher reported incidences of learning disabilities in poorer populations — perhaps due to environmental risk factors such as poor nutrition and high levels of toxins. There is also a higher prevalence of mild intellectual disabilities in children of low socioeconomic status.

Educators are often ill-informed as to what rights parents have, even in later grades, which does not help matters.

“Some of the issues we’ve seen in past cases sort of when parents make oral requests for evaluation and schools are by law supposed to treat those requests as formal requests … So there are families who come to us and say ‘I’ve been asking for some support for my child since September and now we’re in June and nothing has happened and my child is falling behind academically,’” Smith said. “There are maybe some behavioral challenges and the school is not being responsive so those are some of the issues we continue to see especially as kids get older.”

Although the city has improved over the past decade, it still has a long way to go, Judge Royce C. Lamberth wrote in his opinion. Until there is further news on the district’s decision to appeal, it will have to make changes to identify and evaluate more preschool children. If it doesn’t work to make these changes, D.C. will face increased court oversight.