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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.
Illustrated section breaks by Margie Smeller/Make Studio for ProPublica.
Kyra Wade’s favorite color is pink. The 11-year-old likes road trips and the movie “Monsters, Inc.” She loves to watch people laugh. Her culinary preferences run to noodles and rice.
Beyond that, her parents don’t know much about her needs and wants.
Kyra is autistic and profoundly deaf. She was born premature at about 27 weeks, just a little over 2 pounds, which has impacted pretty much everything: eyesight, hearing, digestion, sleep patterns. A strong tremor in her hand makes it impossible for her to use American Sign Language. Her parents think she recognizes a couple dozen signs.
They know she’s frustrated. Kyra often smacks herself on the side of the head with her hand or bites her palm so hard she draws blood, said her mother, Ka Wade. The Wades assume she is doing it when she is in pain. Kyra is not potty trained, but she got her period recently. Ka couldn’t explain what was happening.
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The Wades moved to Arizona in the summer of 2017 with the expectation that services provided by the state would help them care for Kyra. Arizona had long enjoyed a reputation as one of the best places in the country for people with developmental disabilities and their families. Thanks to a special Medicaid program created in 1988, Arizona had an innovative and generously funded system in place.
Arizona’s Division of Developmental Disabilities, or DDD, aimed to keep people with developmental disabilities at home with family, or in small group settings, rather than place them into institutions.
For many years, it worked. The division sent nurses, speech therapists and respite workers to assist families with the responsibilities of caring 24/7 for relatives with CONTINUE READING: People with Developmental Disabilities Were Promised Help. Instead, They Face Delays and Denials. — ProPublica