In the 20 years since she founded The Family School, Sue Johnson is hard-pressed to think of a kid with more cognitive challenges than Rocky Cruz.
The popular Central Phoenix preschool is not designed exclusively for children with special needs, but Johnson's seen her share over the years, including kids with autism and diagnoses such as Down syndrome, which is what Rocky has. Down syndrome is a genetic condition that results in small stature and almond-shaped eyes — and moderate to severe mental retardation.
Rocky turned 5 in March, but she's struggling in the room designed for 3-year-olds at The Family School. Johnson is quick to point out that Rocky's very social; the other kids and teachers really like her. But Rocky can't point out simple shapes. She eats paint. She's not close to potty- trained. She's picked up a few signs and a couple of words, but otherwise has no speech.
Not only can't she tell you her favorite color, both her mother and Johnson are sure Rocky doesn't know what the question means.
She's a constant safety risk. The student-teacher ratio in Rocky's classroom is 3 to 1, a wonderfully intimate number, but it's not enough for a kid who needs to be watched every second.
And so when Rocky's mom, Valerie Revering, told Sue Johnson she was applying for ALTCS (Arizona's Long Term Care System, the state's version of Medicaid services — including everything from access to speech and other therapies to state health insurance and even babysitting assistance), it never occurred to Johnson that Rocky wouldn't qualify. By law, a child must have one of four conditions severe enough to require institutionalization: cognitive disabilities (until recently, referred to in the law as mental retardation), cerebral palsy, autism, or epilepsy.
Rocky didn't qualify. Twice. As of press time, Revering was awaiting the ruling of an administrative judge who heard the family's appeal in early May. Even if the judge agrees with the family — which is unlikely — the final decision is in the hands of state bureaucrats.
Johnson is shocked.
"I couldn't believe she was turned down. I mean, if their criteria is that a child needs to be institutionalized, Rocky will always have to have someone watching for her safety, taking care of her."
Johnson's known of lots of kids over the years who've qualified for ALTCS.
"Those children — they were talking," she says. "They didn't have safety issues. They were participating and going through all our classrooms, and they still qualified for long-term care. So it's changed dramatically."
ALTCS eligibility is determined through the Arizona Health Care Cost Containment System (AHCCCS), and services are delivered by the state's Department of Economic Security.
DES referred questions about ALTCS to AHCCCS, whose spokeswoman, Monica Coury, did not return New Times' three calls.
The Arizona Center for Disability Law referred questions to The ARC of Arizona, which didn't return calls. Another local advocacy group, Raising Special Kids, doesn't keep track of numbers.
And so it's impossible to know how many kids in Arizona are in a similar situation to Rocky Cruz.
But others echo Sue Johnson's sentiments, and Valerie Revering's experience. Anecdotally, it's getting tougher to qualify for ALTCS. The actual test changed a couple of years ago; some say it's made it harder to qualify; others say it already was tough. In any case, advocates and therapists talk about kids with severe conditions like spina bifida who can't get help; there's a story about a girl in seventh grade with the cognitive abilities of a second-grader and a diagnosis of epilepsy — the girl is missing part of her brain but doesn't qualify for services. It's not uncommon for kids with Down syndrome to get turned down, although no one New Times spoke with was familiar with a case as severe as Rocky's.
Public schools offer some therapies for kids who qualify for special education, but parents typically must supplement with additional therapies to really see a difference. The state used to offer some therapy to non-ALTCS eligible kids — but those services were cut back during the latest budget crisis to only case management.
In other words, the state will give you a case worker who will come to your house and visit you and your kid and tell you what kind of help your kid needs — but there's no money for any help. Not unless you qualify for ALTCS.
A few decades ago, children like Rocky Cruz routinely were institutionalized. Now, families are told to take their developmentally disabled children home to care for them; government services are designed to help families do that. But when services aren't available, that's a problem, says Maureen Casey, a longtime local advocate.
"I think, as a society and as a community, we haven't really grappled with the fact that children with these various conditions are living longer and doing better, and the reason is because, over the last two decades, they've been getting better support and services from birth through these various programs," she says. "It's this weird dichotomy of saying, 'Now that you're doing better, we're not going to support you.' But the disability didn't go away."
Rocky obviously is loved. Her siblings painted her bedroom in the family's West Phoenix home to look just like the set of "Elmo's World," the popular Sesame Street segment designed for 3-year-olds. For her 5th birthday, her mom threw her a dance party — complete with fog machine and disco ball. But when it comes to dealing with Rocky's cognitive challenges, her family admittedly is at a loss.
Revering signed up Rocky (her given name is Jessica; Revering nicknamed her in utero, after suffering from kidney stones during pregnancy) for "early intervention" services through the state when she was a baby but by the time Rocky got to the top of a waiting list for speech therapy, she'd aged out of that program.
The Reverings enrolled Rocky in a public preschool, where some therapy would have been available, but were unhappy with the program, so they left.
Revering works as a massage therapist. Rocky's dad, Manny Cruz, works for the nonprofit Abandoned Mine Safety Organization. He ran unsuccessfully in 2010 for state mine inspector; he's now running for mayor of Glendale. If he wins, the family will get good health insurance, Revering says, which would be great because she currently can't afford the deductible to get Rocky tear-duct surgery and a hearing test, which the family's pediatrician says she needs. ALTCS would have taken care of these and other needs, which is a big part of why the entire family crammed into a hearing room in early May to make the plea for services.
The judge clearly was not impressed. The only real question in the hearing was whether the tool used to measure Rocky was administered accurately — not whether the family disagreed with the tool itself.
Johnson reviewed Revering's answers to the questions on ALTCS' tool at New Times' request. She agrees that Rocky's mom responded accurately in almost every case. The test simply is too easy (or difficult, depending on your perspective), they both say.
Consider that, in Johnson's experience, Rocky can't take a basic hearing or vision test. Rocky scored zero on a literacy-screening test, as well — even though it was modified for her lack of verbal skills. She was shown a picture of an apple or a house and asked to point to what she was seeing. She couldn't.
It wasn't that Rocky was distracted during the tests, the school director adds.
"The reason they didn't get any response is that she was unable to do anything." (Test results Revering shared from a public preschool assessment are similar.)
In the fall, Rocky will leave The Family School. She can't stay in the 3-year-old room — and she can't move to the building that houses the pre-kindergarten program. The area isn't secure enough, and it doesn't have facilities for a kid who's not potty-trained.
"We have never had a child that had the level of delay that was significant enough that we could not move them to the next building," Johnson says. "For her own safety, this is as far as she can go."