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It's impossible not to see Abby Sosnow's disabilities the tracheostomy tube that has to be suctioned every 15 minutes, her smallish jaw, her drooping eyelids. A rare syndrome makes it difficult to breathe, eat, talk; developmental delays make it harder for her to do routine toddler things like walking.
But it's impossible not to see Abby as just another little kid, too, with soft red hair that curls up, cute girly outfits, hip tennis shoes, and a pintsize pink television that she watches while bobbing up and down excitedly.
Thousands of kids like Abby are in the state's care right now, and the way they will get services in the near future is going to change dramatically.
If ever there was a reason for Arizona to get it right, it's Abby.
Just one in 8,000 babies are born in the United States each year with Pierre Robin syndrome, and Abby is one of them. The condition has no certain cause and leaves children with mild or severe birth defects. Abby's are severe.
At 15 months, the little girl has had more doctors, nurses, therapists and surgical procedures than any person should in a lifetime. The latest surgery, in September, reshaped her skull.
At the beginning of her life, tiny Abby was working hard just to survive. Now, she's working to catch up doctors don't know whether the syndrome or a long hospital stay caused her developmental delays so she'll be as much like other children as possible when she starts school.
In a typical week, she's got one or two medical appointments and several sessions with physical, occupational and speech therapists. She just added a new language therapy program.
"She's worked so hard," says her mom, Jennifer Sosnow. "Every day we work on something."
To balance things out, Abby goes to music and baby sign language classes for fun. She's got her beloved pink television and favorite shows, weekly visits with grandparents and other stolen moments that are just about being a toddler.
On a recent day, in the great room of her family's Scottsdale home, a Mylar balloon bearing the red-haired character Strawberry Shortcake is gently swaying. Abby is on the ground below, on her hands and knees. The two redheads, very slowly, are on the move.
Jennifer Sosnow's smile widens watching her only child.
"I never thought I'd see her crawl."
Arizona is supposed to be fixing the broken system that serves kids like Abby.
For years, the state Department of Economic Security has been violating federal requirements that dictate how toddlers and infants get critical services including therapy through AzEIP, or the Arizona Early Intervention Program. State officials are under a federal mandate to make changes, and if they don't, Arizona can lose its funding this year, it's $9 million or face legal intervention. Right now, only one other state, South Carolina, is under a similar federal order.
Arizona, federal regulators say, hasn't been capably monitoring a system that affects thousands of fragile young lives. Among the multiple examples of failures found by federal regulators is this: a parent who spent 10 months wading through the state's system before services were actually delivered to the child.
A long delay like that is particularly glaring in a program that only serves children up to age 3, when therapy and other services can mean the difference between a child sitting up or not, trying to talk or not.
Arizona officials acknowledge that children are not being served as they should and are redesigning the entire system. But with one year left on the three-year federal mandate to make changes, the state has yet to roll out its new system.
Right now, therapists work independently with children. In a typical week, a child may have multiple sessions with physical, speech and occupational therapists, plus other professionals like a nutritionist. The state spends on average just over $3,000 a year per kid in Maricopa County alone.
Under the proposed new system, therapists will work together in teams and scrap set therapy regimes, like physical therapy every Tuesday for an hour.
The plan also requires each team to have a leader, so instead of a family regularly seeing three or four therapists, it will see one. That person will provide therapy services whether physical therapy or speech therapy alone or occasionally with another therapist.
Many parents don't want to lose the regular therapy sessions, and don't want a system that would, for example, allow a physical therapist to provide speech therapy.
And some therapists don't want to join a team or provide services they're not licensed to provide. Fearing both, some are already saying they won't work in the early intervention system. Arizona, already battling severe shortages of therapists and long waiting lists almost 550 kids statewide are currently waiting for services through AzEIP can't afford to lose more people.
Public criticism, which the state has been beating back for more than a year, continues on all fronts. In September, when the state asked for public input, therapists, provider agencies and a few parents all fired off e-mails that rip the redesign.
Even people willing to give the state a chance are growing impatient at not getting their questions answered.