This article was produced in partnership with the Arizona Daily Star, which is a member of the ProPublica Local Reporting Network.
Tyler Stumpf wants to work with animals, but instead he’s a janitor. That’s the only job his mother could find for him when the two moved to Arizona from Iowa last year.
Now 31, Tyler was born with Prader-Willi syndrome, a rare genetic condition that results in intellectual disability and low muscle tone and is probably best known for leaving people unable to regulate hunger. Refrigerators and pantries must be locked. Caretakers must monitor food consumption. If not, people with Prader-Willi can literally eat themselves to death.
When they arrived last July, he qualified to receive aid from the state’s Division of Developmental Disabilities and its long-term Medicaid program, said Tyler’s mom, Melody Linderwell. But she said that actually getting help has been a challenge. Low pay has resulted in a shortage of caregivers, even in central Phoenix. To make up for it, DDD pays parents to provide care for their adult children. But Melody says the program has left her trapped at home, paid minimum wage for 40 hours a week when her son’s care occupies her 24/7. She has no health insurance and no retirement.
Melody earns $12.54 an hour. At least that’s more than Tyler makes in his custodial job, she said.
The Division of Developmental Disabilities is supposed to offer assistance with job placement and housing, but after asking repeatedly and receiving no help, Melody finally found an agency on her own that would employ Tyler. She is still looking for a group home that can safely take him, something they both want.
In a statement, DDD officials said most of its clients get help quickly and are satisfied with care. They did not respond to specific questions about Tyler’s case.
“In a year we are on our fourth case manager and did not get notified when they were changed,” Melody wrote in an email in mid-August. Service hours for caregiving have to be reauthorized each year; the deadline had passed with no word from DDD and no answer to Melody’s messages.
After months of complaining, Tyler now has his fifth support coordinator. Melody said she had to beg for someone with a few years on the job. The new support coordinator got her son’s service hours reauthorized and even added a few hours for caregiving.
It’s not nearly enough, Melody said.
“I thought Arizona was rated high for disability services, but that is wrong.”
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