This is a guest post by Coco’s mom, Jessica Aysseh, shared, with Coco’s permission, for the purpose of providing documentation of Coco’s success for others who may be in similar legal battles.
In 2018, I filed an administrative complaint with the U.S. Department of Justice (DOJ) on behalf of Coco’s civil right under Title II of the Americans with Disabilities Act (ADA) after her school district said it would not provide Coco with her requested effective communication “auxiliary aids and services” (an ADA term). DOJ transferred the complaint to the Office for Civil Rights (OCR) at the U.S. Department of Education. After an investigation, OCR decided to weigh the school district’s determination about Coco’s communication needs over Coco’s expressed communication preferences. Coco’s middle school speech-language pathologist (SLP) had “proved” using her “data” that Coco’s preferred and most effective means of communication was an app on the iPad with page after page of stick-figure pictures, which in fact prevented the school from communicating effectively with her, and vice-versa. Coco never communicated a single functional message in my presence with that app. It was heart-breaking to see that her own school and the federal government were so insistent on silencing her, arguably in violation of Title II of the ADA.
By dismissing Coco’s requested effective communication auxiliary aids and services and disregarding her right of self-determination, the SLP’s observational “data” was paternalistic and dehumanizing. Although communication rights law in the United States — on its face — supports Coco, it has rarely recognized the rights of augmentative and alternative communication (AAC) users like Coco to be supported with their preferred communication tools and supports. By requiring people like Coco to file administrative complaints or go to court to affirm their civil rights under the ADA, the legal system itself discounts non-speaker communication preferences in favor of those that profit from their voicelessness. The choice was never Coco’s. The choice was left in the hands of the nondisabled decision makers who have power over their disabled students. And without any effective way to communicate, Coco was relegated to a segregated classroom that served more like a day care and less like an educational environment designed to teach grade-level academics. The system is rigged against them.
Then, just a few months later, a miracle happened. An open-minded, rational, and compassionate person came to be our district’s new assistant superintendent and director of special education. He and a colleague were blown away when they saw Coco use her preferred form of AAC. She communicated to them, “Please allow me an education. I will be your best student.” With tears in their eyes, they told her “Yes.”
Coco worked her way through the entire high school regular education curriculum. It took 5 years, including summer school coursework every year. Her success was dependent on a few factors: 1) An amazing and dedicated aide who stayed with her all 5 years and rarely missed a day; 2) A flexible schedule – including only 2 or 3 classes at a time with none of the usual special education time-fillers taking away academic time (cooking, chorus, art, etc.); 3) A relatively hands-off approach from special education staff who let the aide take the lead; 4) No speech therapy or Applied Behavioral Analysis intervention or services; and 5) Continual support from an outside consulting professional who trained and coached the aide in how to support Coco’s communication.
Coco has graduated. She wrote every paper, completed every assignment, and passed every test. She is attending a transition program now, including taking college-level courses. She plans to attend college after this. She has been a shining success and a role model for non-speakers.
It recently came to my attention that OCR’s decision in Coco’s case has been used to help deny communication rights to other students in the United States (see case notes). For school districts to use our case as a precedent to deny communication to their non-speaking students is a travesty. Fairfield reversed its position because it came to believe it was wrong and unfair. Their support of Coco’s communication and educational needs have resulted in the most successful outcome possible for Coco. The district continues to expand the spelling supports made available to their students. I only hope other districts will follow suit.
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