TOTTENVILLE — John Hudson Dilgen was born with a rare disease that causes his skin to blister and shear off, leaving him with wounds on his body equivalent to second- and third-degree burns.
The 10-year-old Staten Island boy is constantly covered in bandages. Sometimes the pain in his feet is so bad he can't even walk to his school at P.S. 1, a block away. Instead, he uses a wheelchair.
“When he's in that kind of pain, then he can't walk. ...He just stays on the first floor [of the school],” said his mom, Faye Dilgen.
“At least he’s getting to school.”
But when John graduates fifth grade in the spring of 2014, he may not be able to do even that.
The middle school he’s zoned for — I.S. 34, which is just across the street from his Tottenville home — does not have wheelchair ramps outside or elevators inside. To find an accessible school, he will need to travel to I.S. 75 in Huguenot, a 20-minute drive away.
“I think it's going to be difficult explaining to these kids what’s going on [with his illness]," said his mom.
"It's going to be hard to start that over again. He’s been with these kids for six years and he wants to stay with them.”
Dilgen and other parents of children with accessibility issues have banded together to start Parents for a Barrier-Free Education in an attempt to get the city to install elevators in I.S. 34.
The group started an online and written petition, which already has more than 1,000 signatures, to ask the Department of Education to install elevators in the school.
The Americans with Disabilities Act of 1990, a federal law that prohibits discrimination based on disabilities, does apply to public schools. But it does not require every public school to be wheelchair accessible, according to the Pacer Center, a training and information center for parents of children with disabilities.
As long as a student can go to an accessible public school, it does not have to be the one that child is zoned for.
Dilgen said I.S. 34's principal backs her push for elevators, but she said the DOE has been unresponsive to her requests.
A department spokeswoman said they did respond to Dilgen’s request and that there’s no money budgeted for the elevators. A spokeswoman said the DOE will review her suggestions when the next budget is proposed in November.
“Unfortunately, we do not have funding available in the current capital plan to add an elevator at I.S. 34,” spokeswoman Marge Feinberg said.
“However, we will review this request as we plan for the capital plan, which we will propose in November 2013.”
She said there are currently eight middle schools in Staten Island that are partially or fully accessible.
The DOE also provides transportation to children with special needs who attend one of the schools, Feinberg said.
But some parents said they don’t want to have to separate their children from their friends or siblings.
“I don’t want my kids in separate schools,” said Lucy Schwarz, whose twin sons Stephen and Nicholas, 10, currently go to P.S. 6.
Nicholas, who was diagnosed with osteofibrous dysplasia, needs surgery about once a year to remove recurring leg tumors, his mother said.
Because of the lack of elevators in I.S. 34, Nicholas would have to go I.S. 75 during the six to eight weeks he recovers after surgery.
“I don’t want him to feel that he can’t go where everyone else is going because of his condition,” she said.
His mom said he’s already uncomfortable with stares from students at his current school on the days when he arrives in a wheelchair, and worries what will happen when he gets separated from his friends.
“It makes him uncomfortable, and these are the people that he knows,” Schwarz said. “I can’t imagine having to go through a whole other environment like that with a whole new group of people.”
For Dilgen, she fears separating her son from his friends will make his life even harder.
“He's looking forward to getting to I.S. 34,” she said.
“It’s going to be devastating. It’s going to break his heart.”
