“600 Words by Esther J. Cepeda”
When Nelly Aguilar’s son Jason was diagnosed with Autism and their school district basically prepared her for her son to spend his life in a basement with non-verbal children, she knew she had found her calling: to advocate for her son.
“I was stunned by the amount of trouble people have to go through to get basic education services, basic rights for their special needs children,” Aguilar, a 33-year-old Mexican immigrant whose lived in the U.S. since she was six, told me.
So the 33-year-old single mom set aside her well-tended marketing career and decided to get a law degree so she could do just that. “I knew I had to make a change, I knew that he would need a lot of support and I thought that if I went to law school I could help him and other children.”
Aguilar was a single mom to a child who screamed “15 hours a day” and none of the schools she applied to in her then-home state of Texas had any monetary support for her. DePaul University, however, gave her a scholarship worth leaving her parents behind and starting over in a city she didn’t know with a high-need child.
“After he got diagnosed, Jason needed all kinds of therapies and all kinds of help,” Aguilar said, “I would take him to school, then I would go to school, then I’d get out, go get him, take him to his therapies, go home, cook, play, get him down to bed, then stay up until midnight doing homework and studying, then I’d get up the next morning and do it all over again.”
All this and it took her only three years and one semester to get through law school! “Then I graduated and studied for the bar, and passed it,” Aguilar said nonchalantly.
Today she’s one of approximately 15 attorneys in Illinois who work solely on Special Education law as their focus.
“I represent families of children with disabilities in actions against school districts that deny students an appropriate public education. I protect their rights and advocate on their behalf under the federal Individuals with Disabilities Education Act (IDEA),” Aguilar explained. IDEA guarantees students with disabilities an adequate education with the fewest restrictions in the least restrictive classroom environment possible.
“In addition, I make recommendations on pending legislation in healthcare and education, I serve on several boards (Access Living, Autism Speaks, and Stone Soup Community Center), and I participate on statewide and national advocacy activities.”
Because all of that, AND a son with Autism whose now 9, and “doing really well,” isn’t enough, Aguilar is slated to teach a section of Special Education Law at DePaul University College of Law this fall. “I am the founder of the first clinical legal program in the Midwest that protects the educational rights of children with disabilities. I secured federal funding for DePaul University's Special Education Advocacy Clinic.”
Delving into the intricacies, horrors and inequalities of Illinois’ educational industrial complex is a fool’s errand, but Aguilar helped me put the needs into perspective.
· Very few attorneys practice special education law and even fewer attorneys are bilingual and can understand the complex struggles English Language Learners face. Live Downstate? Tough luck, Aguilar couldn’t name a single one south of Kankakee.
· The average State of Illinois institutional stay for those with severe disabilities is about $140,000 per year but the state usually won’t provide preventative therapies which generally cost much less in the long run.
· In the Chicago Public School District alone there are at least 55,000 special education students with Individual Education Plans. 85% live below the poverty level.
· In the State of Illinois there are approximately 60 due process hearings a year. In Washington DC there are about 300 per month, and that’s not because Illinois families are happier than those in DC, but there is already a law school infrastructure for pumping out special ed. lawyers who – when they win a case, get to send the school district for attorney fees. Here in Chicago, however, in-house legal departments have lawyers at the ready to defend a school district’s interests.
Aguilar will certainly start adding to the pool of independent Chicago special education lawyers as a DePaul professor. And she’ll keep fighting for families’ rights.
“I do it more for others than for Jason because he’s pretty situated,” Aguilar said. “It brings me so much hope to be able to take a child who has nothing and a family who has been stepped on or passed over, and over, and over – callously, without any regard to the child’s future,” Aguilar said.
“When I get a child the right support, then I see them a year later and the kids that couldn’t read now can…it’s like the greatest feeling in the world.”
“Chicago Latino List 2009” was generously sponsored by the Chicago Sinfonietta, the Chicago White Sox, and Lettuce Entertain You Enterprises Restaurants. All nominees were independently nominated for this recognition; their rejection and/or selection to “Chicago Latino List 2009” was not, in any way, influenced by any disclosed or undisclosed personal or professional proximity to Esther J. Cepeda or to any sponsor of “Chicago Latino List 2009”.
Esther J. Cepeda writes the "600 Words" & "Pregunta del Dia" columns, and is also the Chief Marketing and Communications Officer for the Illinois Student Assistance Commission. Her views and reporting do not necessarily reflect those of ISAC. "600 words" is a registered trademark of EeJayCee, Inc., Copyright 2008. May be reprinted with permission, contact eejaycee@600words.com
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