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

"I would not let a physical therapist provide feeding therapy to my child because it's dangerous," she says. "And I don't think the physical therapist would do it."

If the state has its way, the system for serving disabled children will look nothing like it does now.

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

AzEIP provides care to infants and toddlers who have disabilities like autism or Down syndrome, or have developmental delays that affect abilities like speaking.

The system's overhaul is being driven in part by the need to correct federal violations. But the state says it also wants to streamline the system and make it more family-centered.

The core of the change, and the source of much of the controversy, is how services will be delivered to children.

State officials believe the current system puts too much focus on a child's disabilities and forces families into time-consuming therapy routines. They want the new system to focus on what families want their children to achieve, like improving a child's behavior at mealtime or involving grandparents in a child's care.

"This is a fundamental paradigm shift away from 'what can't the child do' and set intervals of therapy," says Molly Dries, AzEIP's executive director.

The state wants teams — made up of occupational, physical and speech therapists plus a developmental specialist — that are responsible for children. Teams will meet regularly and determine with the family the child's course.

The state and supporters of the redesign see the system as more holistic. Detractors simply see fewer services and less qualified people providing them.

Under the state's proposal, George Hernandez, who is 11 months old and has Down syndrome, will lose his four weekly sessions with four different people. And Christian Ong, who is two and a half and also has Down syndrome, will lose his three weekly sessions with three different people and twice-monthly sessions with another person.

Instead, the boys will primarily get services from a team leader, whomever the team chooses. So, a leader who is a physical therapist will use his or her expertise, and will also be coached by the team's speech therapist or occupational therapist to provide care in those disciplines. Sometimes, two therapists will work jointly with the boys.

One month, according to the state's AzEIP consultants, the boys might have six visits from the team lead, the next month two — all depending on what the team decides.

Under the state's proposal, the boys' parents will also take on more responsibility for their care. The team lead will spend part of the visit "coaching" the parents to do certain activities like making bath time easier.

Jody Hernandez and Debbie Ong don't see how the new system will better serve their kids.

"Each therapy encompasses so much. I can't imagine [the team leader] being able to do all of it and being able to do all of it well," says Ong.

Nor do they want to change their therapy regimens.

"I don't want to go to less [therapy]," says Hernandez. "I want as much or more. The more the better to overcome his challenges."

Even though parents like Ong and Hernandez praise the current system, it hasn't been working the way it should for almost a decade.

Regulators with the U.S. Department of Education, which oversees early intervention programs across the country, first found problems in 1998 and ultimately discovered that Arizona was violating seven federal requirements.

The state corrected three problems but couldn't fix the other four fast enough. Now Arizona has the federal mandate, called a "compliance agreement," to make corrections in three years.

The remaining violations are serious ones, and have yet to be completely fixed.

A 2000 federal monitoring report said the state didn't adequately monitor its own system to identify federal violations; missed crucial timelines to evaluate children and get started on their plan for services; gave children cookie-cutter plans and didn't actually deliver services; and failed to coordinate services for children.

Dries, AzEIP's executive director, says the state is making headway.

It now has a system to identify any federal violations and then correct problems, though it still needs improvement, she says. The state has also streamlined the way it evaluates and starts helping children.

Dries contends that the state's redesigned program will help children get more timely services. It will eliminate one-size-fits-all plans for care that include unnecessary services, and the "supportive" team approach will help cut down on therapist burnout and turnover.

The state has until mid-December next year to correct its remaining four violations, and Dries says she is "very optimistic" about that happening.

If the state doesn't meet the deadline but is close, the federal government will likely require more monitoring. If it's not close, the state risks losing its funding and could face federal legal action or an audit.

The redesigned system, or at least parts of it, does have support.

Raising Special Kids, a well-known advocacy organization, largely endorses the plan. And Hermon, of the statewide provider association, says members back pieces of it. Therapists, for their part, acknowledge the importance of bringing professionals together to discuss a child's care.

Especially appealing for all is the state's aim to focus on families and children, rather than processes.

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