No room for suburban special needs kids?
By James Fuller
Greer Schnaitman doesn’t experience the world like most other 6-year-old girls do. She is a child with a host of special needs that cause her to learn and interact with others in different ways.
Greer counts ADHD, autism, and bipolar and oppositional defiant disorders among her struggles. She also comes from a family with four children that relies on two paychecks to get by. And now Greer’s mother, Stacey, is faced with a choice she can’t afford to make.
After more than a year at a St. Charles KinderCare, Greer began leaving the classroom without permission and without adult supervision. Schnaitman said the staff at the day care placed a chair in front of the door and a stop sign to curb the behavior.
When it happened again the next day, Schnaitman said the staff told her Greer was no longer welcome at their facility without a one-on-one personal care assistant. At the low end, an assistant can cost $25 an hour.
Stacey Schnaitman found herself one of the many parents of special needs children in between an income rock and a child-care hard place. She is faced with the familiar scenario of being forced to quit her job to stay home with Greer and be without an income she can’t afford to lose.
“Greer asks me, ‘Why don’t they like me? I promise I’ll be good,’ ” Schnaitman said. “I want her to be in day care with her siblings and interacting with other children. Right now, I’m relying on my 68-year-old mother to help out for a while.”
No clear solution
The obvious answer seems to be placing Greer in a child care facility tailored to children with special needs.
But Aimee Pfister, a parent liaison at the DayOne Network in Geneva, said Schnaitman would find that task nearly impossible.
The DayOne Network is a not-for-profit organization specializing in coordinating services for people with disabilities.
“I feel very inadequate in helping parents in this area,” Pfister said. “We don’t have a lot of resources that I can direct people to. We don’t have any, actually.”
Pfister would know. She has children with special needs herself.
“I had to switch to working part-time to provide my own child care,” Pfister said. “I don’t know how I could ever go back full-time, between all of the meetings and the therapy sessions that it takes to get special needs kids through a day …
“But there are people who do it. The only way is to find a combination of family and friends to make it happen. But one of the things our kids need the most is just socialization with their peers.”
Pfister said she gets calls from parents all the time who have a special-needs child that’s been kicked out of a day care facility. In her experience, it’s because most facilities either don’t really want to have special needs children in their facility, or they don’t know how to care for them.
“Typically, they tell a parent they can’t accommodate a child because they can’t keep the child or other children safe,” Pfister said.
“The question I’ve always wanted an answer to is how much do they have to try? What do they have to do before they say we can’t have your child here? Do they have to look into getting some training? Do they have to set up their rooms differently? It’s heartbreaking for a parent and a child when this happens.”
Pfister said most children with special needs, like autism, just need structure and boundaries to fit in with other children. An autistic child trying to leave a classroom is very common, Pfister said, because a child care facility can be very loud and overstimulating for them.
A sign by a door with a child’s name that just says what time of the day the child is allowed to walk out the door can often be an easy solution to the problem, she said.
“That way the child knows that leaving the classroom is not something they can’t do, it’s just something the child can do at, say, 12 o’clock,” Pfister said. “A parent can suggest those solutions to a day care center. But by the time that they’re being asked to leave the center, they’ve usually had a number of difficult conversations with the staff, and there’s no way the staff will take that sort of direction from them at that point.”
KinderCare officials refused to specifically discuss Greer’s situation, but did address what typically happens when they are having difficulties caring for a special-needs child. Anna McMonigal, disability services coordinator for Knowledge Universe, which owns KinderCare, said it’s a rare situation that a parent is told their child can’t be at a KinderCare facility without a one-on-one aide. But it does happen.
“When a child is endangering their own safety or the safety of others, we may require an aide,” McMonigal said. “Requiring an aide is only done in extreme situations and as a last resort.”
Asked for an example of a severe situation, McMonigal said a child leaving a classroom would qualify.
The Americans with Disabilities Act prevents child care facilities from dismissing or not accepting children solely because they have special needs. The law requires centers to “make reasonable modifications” to their policies and practices to accommodate a special-needs child. The law doesn’t define what “reasonable” means.
That’s where people like Kelly Lopresti come in.
Lopresti is the director of The Lily Garden Child Care Center. It’s a facility affiliated with Easter Seals of the DuPage and the Fox Valley Region. It’s also one of the very few child care facilities in the suburbs designed to accommodate children with special needs by mixing them with children without special needs.
Through Easter Seals, Lopresti also trains staffs at other child care centers, like KinderCare, about how to care for children with special needs without one-on-one assistants.
“A lot of other child care providers have a lot of fear because they aren’t familiar with or educated on these special needs,” Lopresti said. “A lot of centers assume a child needs a one-on-one care assistant, but nobody has budgets like that anymore.”
Lopresti said what she typically finds is that a child needs help with eating during meals or some other specific portion of the day, but not the full day.
“Teachers are required to sit at tables with kids during meals anyway,” Lopresti said. “But if a child needs help eating, they think of that as one-on-one care. It’s not. But then parents are told they need an assistant. Who can afford to pay $250 a week for child care plus pay someone an hourly rate to be an assistant?”
Thus begins the path to a child being dismissed from a facility or suddenly prevented from enrolling in the first place, Lopresti said.
“It’s like they put a wall up to these kids,” she said. “I have so many families who call me crying, devastated, because a facility told them they can take their child, but then, when they say they have a child with special needs, suddenly the facility is full and they are put on a waiting list.
“We need to find and create other quality child care centers so we can get these kids with special needs off the waiting lists. There just aren’t enough options out there.”
Lopresti’s own facility has a waiting list. Parents are so desperate to get special needs child care they’ll drive from Chicago or Glenview to Villa Park and back every day just to have a place that welcomes their child, Lopresti said.
In other words, Stacey Schnaitman isn’t likely to find a spot for Greer other than her local KinderCare.
That leaves Schnaitman with possibly only one other option. She can sue KinderCare to get Greer back in. She has a team of civil rights lawyers examining that possibility right now.
Schnaitman argues that the St. Charles KinderCare gave her only a one-day warning of Greer’s possible dismissal and only one day to train her not to leave the classroom. She believes that’s simply not enough for KinderCare to say they reasonably tried to accommodate Greer.
“We’d like Greer to be taken back into KinderCare and for them to get training on how to deal with kids who have these disabilities,” Schnaitman said. “Yes, Greer is a little bit different. She doesn’t like loud noises. She says things that aren’t appropriate. But she’s very smart. I understand leaving the class is a safety issue. However, any other kid could’ve done that, too. So you can’t just say come pick up your child, we can’t deal with this.”
If a lawsuit is unfeasible or unsuccessful, Schnaitman would be back to finding a way to afford a one-on-one assistant. To help with that, she’s hoping to hit the jackpot.
Illinois helps a select number of people with developmental disabilities receive personal aides. But that means being selected from a database known as the PUNS list. The list is typically thousands of names long and now includes Greer Schnaitman.
Only a few are selected for help. Schnaitman is hoping Greer is one of them. But Pfister, from the DayOne Network, said there is almost no chance of that happening.
“It has to be a really intense situation, I mean dire, before your name gets pulled,” Pfister said. “People have referred to it as winning the lottery. It’s a shame. So many people really need that help, but with the limited state funds out there I don’t really see another way of doing it.”
A 2010 study by United Cerebral Palsy ranked Illinois 48 out of 50 states, plus Washington, D.C., for having the highest quality Medicaid services to individuals with intellectual and developmental disabilities like Greer.
“I doubt with our budget the situation is getting any better,” Pfister said. “Bottom line, we stink.”