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Editors’ Note: Why We Wrote About the Way People With Developmental Disabilities Get Treated

How Arizona treats people with developmental disabilities is important. It affects a lot of people. It is personal for us too.

Eric Nunn and his mom, Terri Myers. They live in Scottsdale, Arizona. Eric was born with Down syndrome. He has problems getting help from Arizona’s Division of Developmental Disabilities. (Mamta Popat/Arizona Daily Star)

ProPublica is a group of reporters. We write stories that look at how the people in charge behave. We make sure they are not doing anything wrong or unfair. You can sign up to read more of our stories.

The Arizona Daily Star worked with us to write this story. They are part of ProPublica’s Local Reporting Network.

The Arizona Daily Star and ProPublica wrote a story about people with developmental disabilities in Arizona. Developmental disabilities are sometimes called DD. We looked at how people with DD get help from the state.

Arizona is known for doing a good job helping people with DD. But our story says not everyone gets what they need.

Some examples from our story:

  • A man in Tucson needs help taking care of himself. His sister-in-law can’t find anyone to help. They can’t leave their house very much.

  • A girl needs a device to talk to people, including her family. She is autistic and deaf. She has to wait 3 years to get the device.

  • A 41-year old man in Phoenix needs someone to help him get to the bathroom at night. The state said maybe he could wear diapers instead.

Some people with DD wait a long time to get help. Some people do not get help at all. We learned that sometimes people can’t get help because their paperwork is wrong. We call our story State of Denial. Denial means being told “no.”

This story is important because it affects many people in Arizona. It is important because it affects us too.

Amy Silverman wrote this story. She lives in Arizona. Amy’s daughter Sophie has Down syndrome. Down syndrome is a kind of DD. Amy knows what it’s like to get help for people with DD because she is trying to get Sophie what she needs.

Amy wanted people with DD to be part of making the story. She wanted people with DD to be able to learn from the story. She didn’t want to write a story about people with DD that only people without DD could read. She didn’t think we should write this story how we normally do.

We included people with DD when we were making this story. These are some of the things we did:

  • People with DD told stories about their lives. Many of the storytellers were from Detour Company Theatre in Scottsdale. Amy worked with Maya Miller and Beena Raghavendran for this event. They both work at ProPublica. They asked the audience if they wanted to share their stories too. Many people did. BJ Bolender wanted to share a story about her son Drew. Drew and BJ’s story is now in one of our articles.

  • We hired artists with disabilities to make drawings for this story.

    • The artists are from Make Studio in Baltimore, Maryland. Shoshana Gordon from ProPublica worked with these artists.
  • We took pictures of the main people featured in our story.

    • Mamta Popat took the pictures. She works at the Arizona Daily Star.

  • Plain language is easier to read for some people with DD. We did this so more people could read the story.

  • We read the story out loud.

    • Beena Raghavendran recorded herself reading the story. People can listen to it instead of reading.

We also wrote the main story in Spanish. This means more people can read it.

Some people worry that reporters have bias. They think reporters shouldn’t write about things they care about. They worry the reporters won’t be fair.

We think writing fairly is important. But reporters are people. We all have things we care about. We think knowing a lot about the things we care about makes our writing better. We make sure not to write our opinions though.

We started writing this story because Amy cares about it. She cares because it affects her family. We don’t think caring makes the story less fair. We think caring makes it better.

Jill Jorden Spitz is editor of the Arizona Daily Star.

Rebecca Monteleone translated this story into plain language.

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