Two weeks before school started, the new day care director broke the bad news to Nancy Kelley: No more after-school program would be offered. She would have two weeks to find some other care for her son Joseph.
Kelley did. But she also learned that the director had lied. The after-school program never ended. But the lie got rid of Joseph, who is autistic. His disorder means he has limited speech and sometimes starts head butting when he becomes angry.
When Kim Wright was looking for a day care program for her son Killian, who has Down syndrome, she contacted a church day care that refused to return her phone calls. After she complained to the pastor, the day care director told her the classroom already contained so many autistic children that they didn’t think it would be a good fit for Killian. Wright said she later learned that there were no autistic children in the class.
Working parents of disabled children across Middle Georgia say they often face such lies and excuses when they seek day care or after-school care for their kids. Wright and Kelley were both fortunate to eventually find welcoming programs for their sons, but others are not so lucky.
“You find parents either have to quit their jobs or scale back their hours to care for their kids,” said Terri Goodridge, a parent mentor with the exceptional children’s department of the Bibb County school system. “It’s a scary situation to be in.”
Although federal law requires both public and privately owned child care centers to provide reasonable accommodations for disabled children, many Middle Georgia day cares refuse to do so. Professionals who help parents find child care estimate that a child from this part of the state who has more than a mild disability will be rejected by day cares, sight unseen, about three-quarters of the time.
“In Middle Georgia, it’s more challenging and there needs to be more resources there and more accessible programs to parents,” said Reynaldo Green, director of parent services at the nonprofit Quality Care for Children, which runs a statewide referral service for parents. “There’s just simply not enough invested there to help with inclusion for children with special needs there,” he said.
Green and other child care advocates say most day care providers want to do the right thing, but they need more training and knowledge.
“I think sometimes child care centers may feel they are not prepared or may not do a great job and don’t have the expertise to serve children with disabilities,” said Pam Stevens, pre-k inclusion coordinator for the state Department of Early Care and Learning, also called Bright from the Start.
Carolyn Salvador, executive director of the Georgia Child Care Association, said the state needs to provide more support -- both training and funding -- to help day cares fulfill this role.
The plight of parents
Parents with children who require skilled medical care can get help from Medicaid, which opens doors to day cares such as PSA Healthcare in Macon. The program pairs only three children with each caregiver and provides physical, speech and occupational therapy.
Children at the center often have feeding tubes -- some carried in little backpacks -- or require oxygen or insulin throughout the day, director Katrina Foskey said.
Children may walk on balance beams or ride tricycles down hallways as part of their therapy. On a recent weekday, Deonte Banks, a 2-year-old who has a feeding tube and developmental delays, squealed as he drifted above the ground on a platform swing with his occupational therapist, Lacy Gardner. She helps Deonte strengthen weak muscles and learn self-care activities such as dressing and teeth brushing.
For those whose needs are less profound, the options drop away.
“So many times we have to turn away kids with just a developmental need,” Foskey said. “There’s not really somewhere we can refer them.”
Goodridge said she frequently hears from parents who can’t find after-school care and especially summer care for their disabled children. Her job is to tell parents about the resources available, but in this case there’s little to tell. East Macon Park runs the only after-school program she knows in Macon that can care for children with a variety of disabilities. And last summer, there were only a few two-week camps that didn’t last all day.
Marcie Meelaphsom had to cobble together summer care from family members, a paid caregiver and her own vacation and sick time for her 9-year-old grandson William, who is autistic.
“Summer was awful,” she said. “It was catch as catch can.”
Meelaphsom, who works 12-hour shifts as a nurse, estimated that she paid $600 to $800 a month last year for care for William, who speaks only a little and has no sense of danger.
Meelaphsom said when she asked for suggestions from River Edge Behavioral Health Center, she was told that most parents quit and go on welfare.
Parents whose children are younger than 3 can get some help from a federal program called Babies Can’t Wait. After turning 3, in Bibb County they can attend Northwoods Academy, a public prekindergarten that also specializes in special education. Northwoods Principal Tricia Storey says no disabled child will be turned away there.
But Northwoods has no after-school program. Some of its teachers do go to day cares and Head Start locations in the afternoons to provide assistance there at no cost to the provider or the family, Storey said.
The school system itself offers after-school programs at many other elementary schools. Mary Parrish, director of after-school programs for Bibb County schools, says they are all open to disabled children.
But no children with more than mild behavioral disabilities are enrolled at any of them, and “no parents have shown an interest in having handicapped children take part in after-school programs,” she said.
“We’re going to meet the needs of any of our kids ... if that means hiring a paraprofessional to help them,” Parrish said.
But some parents say they were turned away by the school system for that very reason. Kelley said when she inquired about sending her son to an after-school program at Lane Elementary, she was told he couldn’t attend because the school would have to hire a special education paraprofessional.
Why day cares hesitate
Advocates say day cares most often refuse to serve disabled children out of concern that they can’t provide safe care -- that they will have to hire additional staff, that the presence of a child with behavioral problems will drive away other customers, or that they will be legally liable for a child’s medical care or other problems.
“Everything has to do with staffing, training and liability,” Green said.
Salvador said additional staffing is generally the biggest concern.
“I think it’s when they’re fearful that, ‘I’m already strapped! I can’t afford to hire an extra teacher!’ ” -- incorrectly assuming they would always have to provide one-on-one care.
The Americans with Disabilities Act requires child care centers to provide reasonable accommodations for children with special needs, as long as those accommodations do not fundamentally alter the program.
According to a fact sheet provided by the U.S. Department of Justice, child care centers cannot refuse to accept children based on the name of their disability, or because their care costs more or because accepting them will drive up insurance costs. Each child is supposed to be evaluated individually based on their abilities and needs.
“The provider is supposed to say: ‘We welcome all children, and let’s talk a little bit more about the specific needs of your child,’ ” Green said. “But a lot of providers don’t take that step to see the child beyond the disability.”
“We have to remind people all the time that you can’t just say, ‘Oh, I don’t serve children with special needs,’ ’’ said Julie Phillips, director of the Child Care Resource and Referral Agency of Central Georgia at Macon.
The state itself has seemed to reinforce the idea that serving the disabled is voluntary, because day cares can stipulate if they serve special needs in information posted on the Bright from the Start website.
More than half the day care centers in Bibb County claim they do. In Houston, only eight of 46 say the same.
Kay Hellwig, assistant commissioner for child care services at Bright from the Start, said the data system that feeds to the website is very old and the state is re-evaluating it.
Stevens said she thinks sometimes day care directors say they don’t serve the disabled simply because they have no disabled children currently enrolled, not because they’re unwilling.
Many programs that say they accommodate special needs mean only children with mild disabilities such as attention deficit disorder, Goodridge said.
“If it’s a kid who needs any kind of physical or medical help, or even help going to the bathroom, (the day care) will say they can’t do it,” she said.
Other Bright from the Start policies also have sent conflicting messages. The Department of Justice website indicates that day cares cannot universally refuse to administer medicine or insulin. But Hellwig stated in an interview that centers can require medicine to be given at home.
And until recently, Georgia rules actually forbade day care employees from giving insulin injections. Now day cares can apply for a waiver to provide injections if their staff has been trained.
Many providers are more willing to work with these physical disabilities than behavioral ones.
“Behavioral problems are typically the ones teachers struggle with the most,” Phillips said. “They require more time and attention and are less predictable” than physical needs such as feedings or insulin shots, which can be scheduled.
Salvador, who long ran her own day care in Duluth, gave an example of how behavioral issues affect a day care business.
“Say Little Johnny is throwing blocks at his classmates and he’s taking about 50 percent of the energy in the class,” she said. “You’re trying to get him help for his (attention deficit hyperactivity disorder), and other parents are pushing to disenroll him.
“Then he starts hitting and biting, and now you’re accommodating for that child but you’ve hurt the learning environment for the other children. So your choice is people disenroll, or you pay an extra teacher with no extra pay from parents.”
Legally, day cares cannot charge more to care for disabled children. Small businesses can receive a tax credit, and all businesses are eligible for a tax deduction to help offset the costs of complying with the ADA.
However, the ADA doesn’t require day cares to keep disabled children who pose a direct threat to the health and safety of others. This determination has to be based on the child’s particular activities, not on generalizations about the disability.
A disabled child can’t be rejected because his or her care would require a variance from the day care’s usual policies. For example, some centers refuse to give medicine to children or to accept children who aren’t toilet trained by age 3.
“A lot of providers don’t realize they’re out of compliance with ADA if they’re not willing to bend that rule when a child with a special need arrives,” Green said.
Although parents and child care advocates say day cares frequently violate ADA rules, there’s not much parents can do about it except file a lawsuit.
The U.S. Department of Justice can enforce the ADA. But its website lists just one lawsuit it ever filed and three settlements it reached with violating day care centers or chains. These were all under the Clinton administration.
Officials with Bright from the Start say if they are informed of a day care refusing to serve disabled children, they work with the day care to find ways to accommodate the child.
State support for day cares
“I think if there were greater support and resources from the state, it would make a huge difference,” Salvador said. She suggested the state should provide special education teachers, therapists or money for separate classrooms so those costs don’t have to be absorbed by providers.
She also said the state doesn’t provide enough training on this topic. She noted that there isn’t even information available for providers on the Bright from the Start website about inclusion.
The regional child care resource and referral agencies used to send inclusion specialists to provide one-on-one assistance within day cares, Phillips said. Green said a loan program also provided day cares with equipment and toys adapted for children with special needs.
Those programs, all funded by Bright from the Start, were discontinued more than a year ago as the agency reassessed its approach.
“We’ve totally revised the system over the past year,” Stevens said. The resource and referral agencies contacted all the day care centers in their region to let them know about training opportunities with new classes being offered this year, she said.
Phillips said 48 providers from the 27 counties her agency serves attended in September, and 108 were trained in October.
The regional agencies have continued to provide broad support to day cares by helping them develop inclusion strategies and learn how to track behavior patterns in children and develop better responses, Phillips said.
Often, day care employees aren’t comfortable caring for the disabled because they don’t know enough about what it entails. Wright’s son Killian had good experiences at several local day cares, but sometimes it was a learning process for his teachers.
“One of Killian’s teachers told me she was frightened of him, although she’d been a teacher for 20 years,” Wright said. “She prayed about it and spent time with him. ... She said when she saw him interact with the class, she knew everything would be just fine.”
Some of Killian’s teachers have taught sign language in class so the children could better communicate with Killian, who talks a little but also signs.
At Children’s Sesame on Riverside Drive, director Monique Harrell herself has a son with autism and pervasive defiance disorder. Along with him, the after-school program also serves children with Down syndrome, behavioral disorders and occasionally blindness.
Harrell started her career in day care when she couldn’t find care for her son. Before he was diagnosed, he was suspended from a public school program 22 days, forcing Harrell to stay home and lose her job at Geico. So she opened a home-based day care.
Later, she was hired at Children’s Sesame, where she says she can help parents spot signs and symptoms of some behavioral disorders to help them with early detection.
At Bright Star day care at Hartley Station, the after-school teacher has experience in special education and has been working with an autistic child whose handwriting, speech and vocabulary have improved as a result, said co-owner and director Emily Schroeder.
Schroeder said she always at least gives it a try when approached by parents whose child has special needs.
Bright Star cared for a boy with cerebral palsy for a year before Schroeder and his parents agreed he would be better off at Northwoods Academy.
At 3, she said, “He was the size of a 5-year-old, and he was so strong he could take down a teacher. We would just get beat up. ... I don’t want to turn away any child. But sometimes we just don’t have the training that’s needed.”