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.
"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.
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.
"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.
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.
"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.
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.
"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.
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.
If you like this story, consider signing up for our email newsletters.
SHOW ME HOW
You have successfully signed up for your selected newsletter(s) - please keep an eye on your mailbox, we're movin' in!
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."