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

"Right now, an evaluation is done and deficits are noted and services are designed to address need," says Joyce Millard Hoie, executive director of Raising Special Kids. "The new model will move toward outcomes." But any support for the proposed new system has largely been overshadowed by public criticisms.

A chief complaint from families is that the state tried to push through changes without any of their input. Six families interviewed for this story say they found out about the redesign from therapists, not state officials; two say they sent questions and comments to the state that went unanswered. (Some advocates and service providers have the same complaint.)

Hermon says her provider group suggested to the state that it hold focus groups with families, something the state didn't do.

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

Dries says the state started holding public meetings about changes to the system two years ago, drawing anywhere from a dozen to 50 people that included family members and service providers. Instead of focus groups for families, she says, the state asked advocacy groups for input.

Whatever efforts the state might have made, they didn't fully work.

After tapped-in therapists started telling families what was coming with the redesign, 300 people showed up for a public meeting in April 2005.

The crowd overwhelmed the state, sending officials scrambling to make more room. It was a tension-filled meeting, parents say, that left people with more questions than answers.

Parent Cathy Humphrey, whose daughter is enrolled in AzEIP, left thinking that state officials couldn't have fumbled any worse. Says Humphrey, herself a bureaucrat at a state agency, "If they had started on the ground with the parents and with the therapists, even if they had a framework to start with, and built it together, I think a lot more people would have been on board and advocated for it."

Shortly after that meeting, the Arizona Physical Therapy Association publicly opposed the redesign. Among other things, the association raised concerns about therapists not being able to provide direct care to children or being required, through the state's proposed team lead position, to practice outside the scope of their licensed qualifications.

After a year defending and selling its redesign, the state still hasn't been able to quell all the doubts. It especially can't shake a critical concern that even Dries herself acknowledges: Will the state have enough professionals to provide services?

Therapists are in short supply nationwide, and Arizona is no different.

As of October, 549 children statewide were waiting for 800 therapy services through AzEIP, according to DES.

The state does not track how long a child waits for services. But, anecdotally, Hernandez said her son waited four months for speech therapy. She also must drive him to an occupational therapist every week, because therapists at the 20 agencies she called for in-home service were all booked.

The redesigned system, not even in place, is already driving professionals away. And the pool is shrinking as the number of kids in need grows — with 8,300 today, up from 5,200 five years ago.

Nearly everyone has the same concerns.

A chorus of therapists and service providers is complaining about what they say is inadequate pay for everything from services and administration to mileage and rent.

They also are concerned that they will be asked to perform therapies they are not licensed to do. The state says unequivocally that they won't, that therapists can make joint visits when necessary, but some therapists don't buy that. The AAPPD, the statewide provider association, says providers are "gravely concerned about the potential for . . . unethical practices."

Bernadette Mineo, an occupational therapist for 26 years, wonders why the state isn't putting a premium on the knowledge and experience of trained therapists.

"If you went to a surgeon and needed to have surgery, would the surgeon give you all of the tools to do it?" she says. "That's the problem, not everything is transferable. . . . Information is not the equivalent of skill and knowledge."

The AAPPD gave DES its laundry list of complaints and concluded: "Because of the multiple disincentives built into the proposed redesign . . . many providers believe they will not be able to find an adequate amount of workers in all areas mandated by the proposed redesign."

Two veterans, occupational therapist Mineo and physical therapist Tami Hirasawa, are on the growing list of "wait and sees."

Mineo chairs the occupational therapy department at A.T. Still University's Arizona School of Health Sciences in Mesa and only works part-time with infants and toddlers. The state's new system pushes for full-time therapists, so Mineo doubts there will be a place for her and others like her.

Hirasawa, who served on the physical therapy association's AzEIP task force, doesn't see how the rigid team structure, team lead position or coaching will best serve children or use her expertise.

Meantime, a new cooperative of small service providers — Arizona Cooperative Therapies — came together to join the new AzEIP but now is considering the private market because of its concerns.

The team structure itself, service providers say, is also shrinking an already shallow pool of therapists and other professionals. State-paid consultants, for example, are proposing that providers put together dream teams, with people who are the most qualified, most available, most open to change, and more. This will leave out some therapists and other professionals.

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