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California’s education system has not kept up with ways to educate the many medically fragile children today who survive illnesses that once would have killed them, said Thayer Gershon, who has worked both as a teacher and principal of the Hospital School at Lucile Packard Children’s Hospital. In her 25 years at the Hospital School — which is run by the Palo Alto school district and coordinates schooling for about 1,000 patients a year — Gershon
said she’s seeing many more children survive, but school districts are failing to accommodate their chronic needs once they return. “It’s a new population of kids we’re dealing with,” she said. “Before, many of our oncology kids didn’t survive, and our cystic fibrosis kids didn’t get lung transplants. Those kinds of kids just didn’t return to school, and they were lost to the system. “Now these kids are surviving, but I don’t think any of the districts are prepared for what’s out there.” Although Elijah was in and out of the hospital, the Kings said they were not fully aware of the
Hospital School until his senior year, by which time he had decided to graduate through the GED. They said Gunn staff never directed them to the hospital-based program. For his sophomore and junior years, the patchwork of independent study, online classes and five hours per week of tutoring was simply not viable, the family said. The Kings credit many “heroes” — Gunn counselor Monica Espinoza, Gunn French teacher Marcel Losier and physics teacher Laurie Pennington, to name a few — who they said went the extra mile to help Elijah.
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Leslie King, who has been a teacher in the Mountain ViewLos Altos High School District, also used her own connections and knowledge of the system to try to cobble together an education for her son. But ultimately, the family said, they felt alone in coordinating Elijah’s schooling, which they believe is too much to ask of families already overwhelmed with caring for a seriously ill child. In math, the online program Elijah was using would freeze up, with nobody to turn to for help. The five-hour-a-week tutor was not equipped to teach Elijah in every subject. “The biggest thing missing from the picture was the lack of organization — there was no official program,” Leslie King said. “You have the Hospital School, a sick kid and Gunn High School, and there’s no link.” “Despite the efforts of a few stellar individuals at Gunn who advocated for and accommodated Elijah’s medical needs, the overall system response was, at best, mediocre,” she wrote in an account of her son’s experience. Leslie King isn’t sure the school district she works in, Mountain View-Los Altos, would be able to offer a much better program for a sick student. But, her son said: “In a town with such immense resources and great standing in the academic community, we should be at the forefront of helping kids like me.” For students unable to come to school regularly, Palo Alto offers several options, said the district’s communications coordinator Tabitha Kappeler-Hurley. One is independent study, in which students can work to complete assignments at home and then check in with their independent study teacher regularly to go through assignments, ask questions and take tests, KappelerHurley said. Elijah said his placement in Gunn’s independent study program was not adequate. “In theory it’s great, but in reality it was at-risk kids taking different subjects all in the same room,” he said. “The teacher was doing his best but there were a lot of discipline problems, and it was packet work with people trying to get it done as quickly as possible. And what 16-year-old is going to teach himself everything?” he said. A second option for sick students is online study supervised by the independent study teacher, Kappeler-Hurley said, and the last is a certificated teacher who will come to the child’s home to teach them directly five hours per week. Although the Kings said they liked the five-hour-a-week teacher assigned to them, the actual scheduling was erratic and the teacher was not equipped to teach to Elijah’s level in all subjects, they said. Ultimately, they said, five hours a week of schooling isn’t enough for any student, even a healthy one. The Hospital School’s Gershon
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Upfront
Elijah King, a recent Gunn High School graduate, stands with his mother, Leslie, in Peers Park on Aug. 16. King suffered from a chronic illness throughout high school and found the school district’s support for his education disorganized and inadequate. believes there needs to be state legislation to clear an educational path for students released from the hospital but still medically fragile. “We get kids who have been in different hospitals who haven’t been in school in a year and a half,” she said. “I have five (hospitalized) kids starting school this year who’ve never been to the schools they’re assigned to (in their home districts), so when I call they say, ‘We don’t even know this child. You’re asking us to send work for a kid we don’t even know.’” Gershon believes it should be the responsibility of the state, rather than individual school districts, to fund and follow sick children. The Palo Alto district’s Hospital School “is a fantastic service, but it doesn’t happen anywhere else,” she said. “PAUSD and the Hospital School have been affiliated since 1924, there’s a long history, but it’s just something Palo Alto does.” Fewer than 2 percent of students served at the Hospital School are actually Palo Alto residents, Gershon said. Elijah, who has regained weight and is feeling better, left in midAugust for college, where he hopes to study “intensive special education.” Partly that’s because of his own experience, but also, he said, because of watching his dad coach baseball. “Before I was sick, I was a regular kid who played Little League, and my dad was always the one who drafted the kids with special needs,” said Elijah, the youngest of four boys. “In my younger years that didn’t make me too happy, but I grew up with this and now it makes sense to me.” N Staff Writer Chris Kenrick can be emailed at ckenrick@ paweekly.com.