By Alex Distefano
By Scott Snowden
By Anna Merlan
By Steve Almond
By Jena Ardell
By Jon Campbell
By Alan Scherstuhl
By Tessa Stuart
All new parents await the day when their little wonder says his or her first word. "Up." "Mommy." "Dad." "Cookie." Melissa and Louis Orlando waited anxiously for their twins, Jack and Matty, who were born several weeks early, to speak. But on their first birthday, by which time most kids have talked, Jack and Matty hadn't. At 18 months, there were still no words, and Matty wasn't making eye contact. The Orlandos wondered if there was something wrong, and there was.
Evaluations found that the boys share something other than their birthdaya condition called pervasive developmental disorder not otherwise specified, or PDDNOS, which is related to autism. Now the boys each get 20 hours of help a week from seven different specialists, including occupational therapy, speech therapy, and special instructionall under a city program called Early Intervention that last year helped around 18,000 children with everything from speech impediments to cerebral palsy.
Until last month, some 140 agencies had Early Intervention contracts with the city to evaluate children with suspected problems, provide their therapy, and manage their cases. But then the city told 38 of them to stop evaluations and instructed nine others to cut back on their screenings, although they can all still provide therapy.
The city says some of the agencies they cut processed kids too slowly, or examined too few, but the main problem was that the agencies didn't serve enough low-income people. "It's really our obligation, and sort of mission, to reach out to families who find it hard to access the system, and that would seem to correlate well with low income," says Margo Amgott, the health department's assistant commissioner for early intervention. "We know that we don't get proportionate numbers of referrals from poor neighborhoods in New York."
But the agencies whose contracts weren't renewed detect a different motive: money. The intensive services that kids like Jack and Matty receive aren't cheap: The city spends about $100 million a year on early intervention. Medicaid reimburses the city for the expense of these services for its clients. Private insurance companies often don't reimburse the city. "Insurance companies have for many yearsI think nationally but I understand particularly in New Yorknot participated in paying for these services," says Amgott. "Private insurance should pay its fair share for services that it contracts with its members to provide."
So by shifting Early Intervention toward low-income clients likely to have Medicaid, the city stands a better chance of getting paid back. And by cutting off the agencies most likely to evaluate middle-class families, the health department can achieve such a money-saving shift.
A City Council budget analysis says that's just what the health department aims to doshift costs to Medicaid. But Amgott denies that financial pressures are behind the move to winnow the evaluation contracts. Either way, the move looks at first glance like a win-win: better service for the poor, and less expense to the city. But one question is whether fewer, larger agencies will do as good a job screening kids. Another is what happens to special-needs children whose middle-class families live in the areas served by agencies that got the ax.
Early Intervention is the city's way of meeting requirements established by a 1986 federal law and a subsequent state measure signed by Mario Cuomo in 1992. The Department of Health and Mental Hygiene runs the program for kids up to age three, after which their care becomes the responsibility of the school system's special-education classes. Early Intervention "supports infants and children with developmental delays in their efforts to realize their full potential," the DOH&MH website reads. "It reduces the likelihood of delays among at-risk children, assists and empowers families to meet their child's and their own needs, and entitles children, regardless of race, ethnicity or income, to services through the program." People active in the city's program say it is a national leader in the field.
Most kids are referred for Early Intervention evaluations by physicians who notice some delay in speech or physical skills. Others with more serious conditions, like Down's syndrome, are diagnosed at birth. Each child gets a multidisciplinary evaluation by a team of specialists, and kids who qualify by demonstrating impairments in multiple areas of development get the therapy.
The evaluations themselves aren't lucrative for the agencies: Depending on the kid, they run about $700 a pop. Nor are they rubber-stamp affairs: David Mosesman, executive director of the Gingerbread Learning Center, a special-education facility on Staten Island, says he denies about half the families that come to him.
The evaluations require a skilled touch. The severity of Jack Orlando's condition, for example, was missed at his first evaluation. Then he was screened by Dr. Elise Vetere, a neuropsychologist who runs Early Start, a small agency based in Bay Ridge. She determined that Jack needed more help, and now he's getting it.
On the side of the refrigerator in the Orlandos' kitchen is the weekly schedule of visitsblocks of time each day when some specialist comes to work with Matty or Jack. The parents aren't sure if their insurance company has reimbursed the city or not. "What we get, we could never afford. You can't put a price tag on it," says Louis. Their son Nicholas, now 5, also received Early Intervention therapy for Asperger's syndrome.
Upstairs, Jack is playing bingo with therapist Angela Giudice. He picks a card with a picture of a window on it, then scans his game board carefully, tracing his finger over images of a fish, a boat, a bus, until he finds his match. As he plays, he's practicing his pronouns and learning to ask questions. "One of the things we're working on is language," says Giudice. "He's come a longa very longway. He couldn't say a word when we started." Now Jack is talking, but very quietly. Giudice says that's because he's still nervous about speaking. He also has a hard time with transitions, like getting out of cars and changing clothes. "Things that come naturally to some children don't come naturally to him," she explains.
Early Start is one of the agencies that won't be doing evaluations anymore. Vetere says she was never told exactly why, but she suspects it's because the clientele in her area of the city don't usually have Medicaid. Other agencies sing the same tune. "Our clients have insurance," says Ann Marie Volte, who runs the early-intervention work at Programs for Special Children, based in Staten Island. "We took who came."
The city will still pay Early Start to treat kids like Matty and Jack, but without the ability to do evaluations, Veterewho is organizing a protest against the cuts at City Hall on June 13sees her client base drying up. "If you take away our evaluation contract, you're cutting us off at our knees," she tells the Voice."We do believe it is the city's way of downsizing."
And the agencies who've been cut say there's more at stake than their own survival. "I think it's going to take children longer to get into the system," says Volte. And time is precious. Take a kid with torticollisa condition in which the head tilts to the side. "If that's how you start to stand, that's how you see the world," says Volte.
Kids with problems who don't enter the early-intervention system will probably end up getting special help eventuallyand perhaps needing morewhen they hit school. "If a child is serviced when the child is two we find that most of the problems a child has we can handle," says Mosesman. "If a child comes in at five or six years old, the child's going to be in the system much longer."
The city says that despite the reduced number of providers, there are no delays facing parents who want evaluations. "We're going to be serving the same number of children each year. They'll just be evaluated by agencies who understand how to reach kids who otherwise wouldn't get in the system," says Amgott. "We're totally assured that the needs of these families can be met by the remaining agencies." The affected agencies handled about a sixth of the early-intervention evaluations done last year.
But critics argue that not all providers are equal. Both Orlando boys will start nursery school next year in different special-education programs. Giudice is confident that it will be Jack's only year of special ed. The Orlando's credit their small-scale provider for that success. "If they close all the small agencies, kids are going to fall through the cracks and get lost. PDD and autism, it just comes up on you," says Melissa Orlando. "They lose things. They just start to lose skills."
As Jack played bingo the other day, a loud voice in the next room kept calling "Matty! Matty!" It was speech therapist Mindy Pottheiser trying to get him to make eye contact from his seat directly in front of her. He was working for Doritos, earning one orange-dusted chip each time he followed an instruction like "Stand up" or "Turn around." Sometimes Pottheiser stared intently at the boy to try to get him to make eye contact naturally.
Then they played a matching game. The deck was stacked with elephants of different sizes and colors to see if Matty understood their resemblance to each other. Other times of the week Matty might get massages or joint rubs, or wear a weighted vest. All the tactics are aimed at getting him to attach to the world, to connect him to the forces and feelings outside his skin.
"Every child is different," Pottheiser says, "and we just assess and reassess and reassess what's going to work."