ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.
This article was produced in partnership with the Arizona Daily Star, which is a member of the ProPublica Local Reporting Network.
Emory Webster, 11, lives in Tucson. In a recent interview, she said she does not like to cuddle. Her favorite thing to do in the summer is swim.
Her mom, Adiba Nelson, listened carefully as Emory spoke — sometimes asking a question two or three times to make sure she understood — then explained that Emory loves to paint and hang out with friends. Recently, she’s embraced the idea of being a DJ, pretending to beatbox and scratch records.
Listen to the Story
Play the audio
“Ms. Emory is a little firecracker,” said Adiba, 43. “She is sassy as the day is long, but she’s also one of the sweetest kids ever and funny. Oh God. She has such a sense of humor. It’s ridiculous.”
She’s also a typical preteen, Adiba added. “She gives me hell daily.”
Emory has cerebral palsy, which makes it difficult for her to talk to others, an extra challenge for a social preteen with lots of friends. She has an augmentative communication device provided to her through the Division of Developmental Disabilities, but Adiba said it is outdated — and broken. “I went to plug it in and it sparked and smoke came out of it. I was like, OK, I guess it’s done,” she said.
They’ve waited 18 months for another one. In mid-August, Adiba learned that Emory’s new device was approved in early July. As of the first week of October, they were still waiting to hear when they’d receive it.
In a statement, DDD officials said most of its clients receive help quickly and express satisfaction with their care. They did not respond to specific questions about Webster’s case.
Adiba said DDD’s delay had impacted her ability to communicate with her own child.
“I always say, ‘Would you let your child sit with you and not speak for months?’” Adiba said, adding, “I firmly believe they make it so hard for families that they give up.”
What’s Your Experience With Intellectual and Developmental Disability Care in Arizona?
The Arizona Daily Star and ProPublica are investigating services for people with intellectual and developmental disabilities. Here's how people with disabilities, their families, friends, caregivers, teachers and medical providers can help.
