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Editors’ Note: Why We Investigated the Treatment of People With Developmental Disabilities

Arizona’s treatment of people with developmental disabilities is important because it impacts tens of thousands of people. But for us, it’s also personal.

Eric Nunn with his mother, Terri Myers, at home in Scottsdale, Arizona. Nunn was born with Down syndrome and no longer qualifies for services from the state’s Division of Developmental Disabilities. (Mamta Popat/Arizona Daily Star)

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This article was produced in partnership with the Arizona Daily Star, which is a member of the ProPublica Local Reporting Network.

Today, the Arizona Daily Star and ProPublica are jointly publishing an in-depth examination of Arizona’s system for helping some of its most vulnerable residents: people who are intellectually and developmentally disabled.

Arizona enjoys a national reputation for its efforts to keep such individuals with their communities and families instead of warehousing them in impersonal institutions. But our stories chronicle disturbing shortcomings in the promise of help offered by the state’s Division of Developmental Disabilities.

One Tucson woman has barely left her home in four years because she can’t find care for her adult brother-in-law. Another family waited nearly three years to obtain a device to communicate with their daughter who is autistic and profoundly deaf. A mother in Phoenix asked for a caretaker to help her 41-year-old son at night. A state worker suggested she buy diapers instead.

For these Arizonans and their loved ones, delays and denials are all too common. Our analysis shows that people who apply for help are frequently turned down because of paperwork problems, not a lack of need. For this reason, we have called our project State of Denial.

It’s an important topic because it affects tens of thousands of Arizonans. But for us, it’s also personal. Amy Silverman, a longtime Arizona investigative reporter who researched and wrote much of the project, knows this topic because she lives it: Her 17-year-old daughter, Sophie, has Down syndrome. Amy understands at a gut level how difficult it can be to find the right services for a person with a disability, to find the best educational fit, to find a college program that will educate her bright yet childlike daughter.

Because Amy loves someone with an intellectual disability, she was determined throughout this project that her work would be for people with disabilities, not just about them. She wanted people like her daughter — and the people most affected by this topic — to be able to access it. And she knew that the typical way we report and publish wouldn’t be enough to make that happen.

Her passion led to some groundbreaking work to directly involve people with various disabilities. This summer, Amy worked with Maya Miller and Beena Raghavendran from ProPublica, as well as Rebecca Monteleone from Detour Company Theatre, on a virtual storytelling event that brought together members of the group, a Scottsdale-based troupe for people with disabilities, to tell their own stories to a live audience. They also put together a questionnaire asking people with developmental disabilities to share their own experiences — and they did. BJ Bolender, who is featured in one of our stories, connected with Amy by responding to the callout.

The spirit of making people with disabilities central to the story inspired the entire Star and ProPublica team. Shoshana Gordon, a story production fellow with ProPublica, commissioned illustrations from artists with disabilities who work with Make Studio, a community-based art organization in Baltimore. Star photographer Mamta Popat traveled the state to take documentary-style photographs of the main characters in the stories, as well as their families.

We have also tried to make the stories more accessible to our audience. We commissioned a translation of the articles into plain language, which is intended to make information more understandable for people with intellectual disabilities.

Raghavendran narrated an audio recording of the articles in the project for people who have vision or other reading challenges. Finally, the main story was translated into Spanish to reach a wider audience.

There’s a lot of talk in journalism today about bias, with the assumption being that reporters who believe something can’t write about it fairly.

Of course, there is some truth to that idea — we would not let our education reporter advocate for school choice, for example. But it’s not realistic to believe that journalists are robots without opinions. We have lives and experiences that make our reporting richer, provided we remain vigilant about keeping our opinions out of the stories we publish.

The project happened because of Amy’s quest to provide a bigger and broader life for her daughter than society told her was possible. Did she come to this project with preconceived notions? Probably, just like the ones we all hold. Did it damage the integrity of her reporting? Just the opposite.

Jill Jorden Spitz is editor of the Arizona Daily Star.

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