Arizona enjoys a national reputation for its decades-long efforts to keep people with intellectual and developmental disabilities at home with their communities and families instead of warehousing them in impersonal institutions. But Arizona Daily Star reporter Amy Silverman, as part of a year-long fellowship with ProPublica’s Local Reporting Network, investigated Arizona’s system for helping its most vulnerable residents and found disturbing shortcomings in the promise of help offered by the state’s Division of Developmental Disabilities.
Amy reviewed thousands of pages of documents, analyzed data with Arizona Daily Star Data Reporter Alex Devoid and interviewed more than 100 people with disabilities and their family members as well as advocates, caregivers, attorneys, doctors and bureaucrats to reveal years of mismanagement, funding shortfalls and turnover at every level of 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 investigation showed that people who apply for help are frequently turned down because of paperwork problems, not a lack of need. For this reason, we called our project State of Denial.
The project garnered national attention for its accessibility efforts, and also led to change. Some people featured in Amy’s stories suddenly got the services they had been begging for as soon as we published their stories. The mother of an 11-year-old girl with cerebral palsy who waited 18 months for a communication device got a call the day after her story ran; suddenly, the device was ready.
In addition to State of Denial, Amy reported several other stories about the lack of services for Arizonans with disabilities. One detailed the impact on Covid-19 on people living in group homes. Another story focused on the demise of independent oversight committees designed to provide outside accountability and the failure of the state to fulfill recommendations made by a governor’s task force on abuse and neglect of people with developmental disabilities.
Amy’s work challenged assumptions we often hear from readers that reporters who believe in something can’t write about it fairly. For Amy, the story was personal. Her 17-year-old-daughter has Down syndrome. Of course, journalists are not 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.