Broken

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

"I've got to have someone who's all-around perfect," says Jessica Irwin, owner of S.E.E.K. Arizona, an agency that provides therapy and other support services to disabled children. "It's hard enough to come up with speech therapists in general. And I'm pretty picky."

As for criticisms of the proposed team approach, today every state uses some version of a team, and Arizona gets points for using the "innovative" team lead position, says Cindy Oser, Western Office director for the national Zero To Three advocacy organization and the former chief of Ohio's early intervention program.

But Arizona could have taken cues from other states that have changed their systems. Georgia, for instance, slowly rolled out its team/team lead approach over a few years and sought volunteer families to make the first transitions. Florida created teams with different therapists and professionals based on a child's needs versus a defined model. And Kansas, while endorsing the team approach, isn't mandating it; a handful of areas in the state so far are using it.

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

Public backlash of Arizona's redesign, in part, has stalled plans for rolling out the new system several times. With the March 2007 date recently scrapped, the state is working on another deadline.

Dries can't say when that will be, nor is it clear how the transition will take place.


Uncertainty hovered over Maria Humphrey even before she was born, and at two and a half years old, there are still no promises.

She wasn't due to join the world for another couple of months when her doctor discovered a problem.

That day, Cathy Humphrey, like any new mom, was eager for another ultrasound of her baby girl. "I want to see if she's still as cute as she is," she remembers saying.

But what the ultrasound confirmed was hydrocephalus, which causes fluid to build up in the brain. Two weeks later, Humphrey's doctor decided to deliver Maria early.

Cathy Humphrey divides her time between caring for her only child and her job as a training coordinator at the Arizona Bureau of Land Management.

These days, Maria can almost sit by herself, but there's no real crawling, standing or walking yet. Her vision and hearing are impaired but improving. And Maria doesn't speak, though Humphrey believes her daughter has attempted "mom" or "hi" or maybe even "milk."

On a recent Monday afternoon, in the living room of her northwest Phoenix home, Maria plays the part of a princess in her very own new pink chair. Humphrey tries to get her daughter to sit upright, but Maria's body slides down the soft fabric, over the matching ottoman and onto the floor.

The little girl is motionless except for movement in her eyes. Her shiny chestnut hair is loosely gathered up atop her head, except for a few wisps that frame her face. The hairstyle makes way for the eyes, big and brown and dotted by long lashes.

No one knows exactly what Maria can see.

"She's tracking better and noticing things more," says Humphrey. "Now she will smile when she sees us."

Always, she says, there's hope.

When Maria settles in for her regular Monday session with her longtime physical therapist Barbara Womack, there's a lot of ground to cover. There's the usual physical therapy, but also how to end Maria's teeth grinding, what to do about a thumb-sucking habit that sometimes makes her gag, details of a planned eye surgery, and how to use the new pink chair for more than a princess' throne.

Pretty quickly, Maria makes a move to sit up, and Womack goes to work, guiding, touching, predicting, teaching, talking, encouraging.

"I kind of take cues from what I think she wants to do," says Womack.

At one point, Maria twists her small body around and gets up on one knee. Will the other knee follow? No, and she slowly drops her head to the ground with one leg under her and the other stretched out behind almost like a runner at the starting line.

When that other knee comes around, sort of, she pushes herself up on both hands. She starts to tip over, steadies herself with Barb's help, and then for a brief moment holds up her head.

If Maria feels the victory of this hard-won moment, it's hard to tell. There are no words, no smiles, no obvious expressions of satisfaction. Maybe a hint of it in the eyes, maybe not.

Even after two and a half years, Humphrey can't get used to the uncertainty.

"That's one of the things that's been the hardest," she says. "We don't know what to plan for, what to hope for, what to think about her future."

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