The system that serves tiny children with disabilities is nowhere near fixed, after years of trying on the governor's watch

"That's one of the problems," says Bev Hermon, a former state lawmaker and executive director of the Arizona Association of Providers for People With Disabilities. "It's the uncertainty that's bugging people."

There's a lot at stake with the AzEIP overhaul.

The state already is nursing many wounds over its mishandling of public systems like Child Protective Services and the mental health system for the indigent. If the state rolls out an unworkable new early intervention system, it faces a tough lobbying force. Unlike many of the people involved in the other troubled public systems — say, a homeless mentally ill man — children in the early intervention program have families that cut across all socioeconomic and education levels and belong to countless advocacy organizations.

Fred Harper
No one knows exactly what Maria Humphrey can see.
courtesy of Cathy Humphrey
No one knows exactly what Maria Humphrey can see.

Governor Janet Napolitano's office also has a political stake in the new system's success.

Napolitano inherited a failing program when she was elected in 2002. By that point, federal regulators had already uncovered myriad problems with how families were being served. In 2003, Napolitano brought in David Berns to take over DES, but the troubled and headline-grabbing Child Protective Services trumped just about anything else in the agency right away.

If the governor got a pass in the beginning, she's got accountability in the end — politically for positioning herself as a champion of children, and practically speaking as the state's top elected official.

Napolitano rode into office in part on pledges to improve education and protect children. The early intervention program is briefly cited in two Napolitano-driven action plans, one for school readiness and one for reforming the state's child protection system. Those plans say successful intervention better prepares toddlers for school and also helps decrease the risk of children becoming abused.

So shouldn't 8,300 young lives hanging in the balance move AzEIP up on the administration's priority list? It's not like the governor hasn't stepped in before with other troubled systems, in one case last year dispatching her general counsel to look into the suicides of two clients in the public mental health system.

Instead, here's what the Napolitano administration has to say about AzEIP:

"I think we've been watching the system redesign, we've been listening to the department," said Angie Rodgers, the governor's policy adviser for human services who joined the administration in July.

"We've been ancillarily involved just to keep track. . . . I think that we're pleased so far with the progress that's been made."

Napolitano deputy chief of staff Michael Haener said in a statement that the governor's office "has been working with and receiving updates on" the redesign. He offered no explanation beyond that. And Napolitano was too busy to talk about it, Haener said.

As the redesign controversy swirls above her, Abby Sosnow, with all her challenges, keeps doing things her family never expected. Like eating spoonfuls of apples and blueberries, puréed and purple and dripping down her chin like a messy badge of honor.

Children born with Pierre Robin syndrome, marked by a small jaw, have serious breathing and eating problems. Abby's got the tracheostomy, which requires regular suctioning day and night to keep her breathing freely.

As for feeding, Abby is learning to swallow so she can eat solid foods.

The list goes on: ptosis, or droopy eyelids, moderate hearing loss, difficulty touching things with her fingertips.

After Abby was born, Jennifer Sosnow stopped working full-time at Honeywell to oversee much of her daughter's care and daily schedule. She still works part-time as a staffing manager for the company.

Right now it's hard to point to any one of Abby's challenges as needing the most attention. But eating is right up there, and every Tuesday afternoon mom and daughter spend an hour tackling it through AzEIP at the Upward Foundation with speech pathologist Betsy Hill.

In a recent therapy session, Sosnow is excited about a new tool she's going to try with Abby: a jalapeño-flavored sausage stick. It's just the thing for Abby, whose taste buds are less sensitive than typical kids' because she couldn't try solid foods early on. So the petite girl in the coral shirt and coordinating bottoms settles in for the spicy sausage, followed by a dill pickle and a piece of sun-dried tomato.

During the session, Hill uses different therapeutic tools to apply pressure to Abby's upper palate and get her to close her mouth. It works a few times.

Next, they're on to the jar of puréed apples and blueberries. As Sosnow spoons small bits into Abby's mouth, Hill runs her finger under Abby's chin to help with swallowing. At one point, Abby takes a bite and then closes her mouth.

Sosnow and Hill go back and forth working with Abby, with Hill offering guidance on therapeutic techniques and more. Is peanut butter too "goopy"? How much jarred food do babies typically eat? When Abby's nurse reaches over to wipe a glop of puréed apples and blueberries off the girl's mouth, Hill quickly offers a word about letting kids with feeding challenges get messy to increase their comfort level with food.

Sosnow, like other parents, fears that services like this — regular therapy with the most qualified professional — will be eliminated under the state's new early intervention program.

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