Palo Alto Weekly

News - September 6, 2013

Arduous educational journey for chronically ill student

Palo Alto teen shares story of patchwork schooling, poor coordination

by Chris Kenrick

Elijah King of Palo Alto is doing well a month into his freshman year at Ohio University, but getting there was a nearly impossible journey.

The once athletic, active "regular student" was stricken with Crohn's disease in his sophomore year at Gunn High School. Down to 90 pounds, in and out of the hospital and often too sick to go to class, his schooling deteriorated into a patchwork of self-teaching, online learning, sporadic tutoring by teachers willing to help and a five-hour-per-week tutor provided by the Palo Alto Unified School District (PAUSD).

Frustrated by what he believes is a lack of adequate coordination for students like himself, he ultimately left Gunn, took the GED test and got himself to college, with the help of his Gunn counselor and a few teachers.

But Elijah and his mother, Leslie King, want to share their story for the sake of other families with sick children who face the same struggle.

While not claiming they would have received any better service from another school district, resource-rich Palo Alto should be able to do a lot better, they said.

"Why did they provide little guidance, fragmented solutions, no coordination and minimal staff support?" Leslie King asked. "Sadly, we know from talking to teachers and parents of sick children that our son is not alone in this experience in the PAUSD."

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.

Leslie King, who has been a teacher in the Mountain View-Los 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, Kappeler-Hurley 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 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 mid-August 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."

Staff Writer Chris Kenrick can be emailed at ckenrick@paweekly.com.

Comments

Posted by public editor, a resident of Duveneck/St. Francis
on Sep 6, 2013 at 2:47 pm

Good job interviewing people, that's great. A suggestion for improvement is that next time you should make sure that the quotes you get are relevant, true, and make sense in the context of the story.

Is it relevant, for example, that children survive leukemia and cancer now when they used to die to a story about Crohn's disease? No. Is that the reason that this child got terrible service from PAUSD, because cancer survival rates are up? No. That quote from the former principal of the Packard Hospital School has literally nothing to do with this situation.

That's a nonsequitor that helps to fuzz out whether or not PAUSD is responsible for providing a reasonable education for kids who are chronically or acutely ill.

The relevant fact is that PAUSD never even referred this family to the Hospital School and their kid had to get a GED. Really? That's a violation of his rights under the ADA and the IDEA. Did no one at the Weekly think of that and ask Tabitha for comment on that issue: hey what about reasonable accommodations and the rights of the disabled?

Instead we get a random theory about how cancer survival rates have somehow made it hard for PAUSD to do its job.

What about all the kids who are in the hospital due to eating disorders, depression, and other mental health issues? Did cancer survivability rates force all them to get GEDs too?

Does anyone at all even understand that there are laws that govern these issues. Dear family of this child: sue. He had a right to an education despite his disability. He didn't get it. That's disability discrimination.


Posted by Just Read the Merc, a resident of Greater Miranda
on Sep 6, 2013 at 3:58 pm

"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."

Um, evidently it's not actually something Palo Alto does, per your own story that says that the family was never even referred to the hospital school, had a bad experience, and never graduated from high school.

Details.

Is there any way we could ever get a story about education that doesn't pat PAUSD on the back? Hey good job running this thing that no one else has even though according to the story 98% of the students aren't from PAUSD, so everyone has it, and anyway this kid didn't get it, but only Palo Alto has it because PAUSD is uniquely great. Somehow. That is not supported by this story.


Posted by confused, a resident of Another Palo Alto neighborhood
on Sep 6, 2013 at 4:38 pm

I have to agree. This article left me wanting to know more too.

It appears that the family was OK but not elated with the mix of education services it received (1-on-1 tutoring 1 day/5 hours a week at home AND live teachers who supervised online instruction and independent study) but says that the family would have preferred to have had their son attend Packard's Children's Hospital school instead.

It would have been helpful if the article reported what the Packard School is, which I understand is pretty much the same as what he was getting from PAUSD - live teachers who serve as a resource for high school students who are self-studying. It is only available while students are in the hospital there or out-patients under Packard doctors' care staying at the Ronald MacDonald house because they live far away. Others are to go back to their regular school once released from the hospital.

Was Packard Hospital a long-term option for this teen? The article implies no by its focus on the student managing his illness at home and in the regular high school. Confusing.

Out of curiosity, I just googled Chrohns. Chrohns is a terrible, chronic condition that, for most, comes and goes. The Chrohns Foundation lists the accommodations schools can make to help students manage their illness:

At School
- Unlimited passes and classroom seating near the door
- Allow small snacks and supplies that can be eaten/used as needed.
- Test and project accommodations with test "stop the clock" breaks
- Rest time and place at school as needed
- Medication schedule

Out of School
- An extra set of books for home
- Allow the student to make up or get help with assignments, at home or while in the hospital.







Posted by Observer, a resident of South of Midtown
on Sep 6, 2013 at 5:07 pm

[Post removed due to same poster using multiple names]


Posted by Casti sux, a resident of Palo Alto Hills
on Sep 6, 2013 at 7:00 pm

My. IEEE attended Castilleja for several years. When she was stricken with cancer, she missed so much school that they held her back a year.

The real clincher came when the original cancer was cured, but she developed secondary leukemia as a result of the curative chemotherapy. This necessitated a bone marrow transplant and five months of isolation.

Would Castilleja allow her to keep up by telecommuting to school? NO! They kicked her OUT!

Another reason why PAUSD is superior to private schools!


Posted by anonymous, a resident of Duveneck/St. Francis
on Sep 6, 2013 at 10:20 pm

I found this to be a very meaningful story, though the article confused me at points. I want to send my support to the boy and his family, congrats on moving onward despite your obstacles!!


Posted by Samantha Stephens, a resident of Barron Park
on Sep 6, 2013 at 11:35 pm

From what I can tell, the key failing of the district was not directing the family to the hospital school, and instead leaving them to navigate a patchwork of services that ultimately didn't add up to the education he was entitled to.
Tabitha Kappeler-Hurley, the district's new $150k PR person, basically confirmed that. When she was asked about the resources available to very sick children, she didn't mention the hospital school either. Since she presumably asked whoever at the district is supposed to know this, it seems that that person is still in the dark.
The key question to Tabitha would be, why didn't the district arrange for hospital school. Did that question get asked? If so, what was her answer?


Posted by Useless, a resident of Old Palo Alto
on Sep 7, 2013 at 9:27 am

[Post removed due to same poster using multiple names]


Posted by Esmeralda , a resident of Crescent Park
on Sep 7, 2013 at 9:33 am

It's not Tabitha's fault, she's just repeating what she's told to say. Garbage in garbage out, as engineers say.


Posted by mom, a resident of JLS Middle School
on Sep 7, 2013 at 1:06 pm

I know everyone is tired of hearing about the Finnish model, but there really is something to doing whatever it takes for each child. (In the Finnish model, it turns out not to be the most expensive way, but it gets the best results.) In our problem-solving, high-tech culture, simply putting the energy into problem-solving and doing what it takes for each kid to succeed would fit.

I truly think the teachers in our district foster such a culture and themselves are willing to go the extra mile, as this article pointed out. Unfortunately, there is no support from the district, which encourages a very different culture, and they can even be antagonistic when a 504 is in the mix.

I'm so sorry that this young man had to go through this, Crohn's is awful. I wish him the very best in his university education.


Posted by Parent, a resident of Greendell/Walnut Grove
on Sep 7, 2013 at 2:46 pm

Here we go again with the PAUSD bashing. The story is too sketchy to derive enough real information about what the district did that might be crafted into a sharp enough tool to once again chop away at those who work there because of what to happened to this clearly determined and worthy young man. Instead of using every education related event to hack away at the district, and who ever writes for PA Online, how about turning our efforts toward fixing school funding in California, so that every student has the benefit of a good education? All this squabbling is really the result of the enormous budget shortfalls, which, here in Palo Alto have been patched again and again by things like PIE, and parcel taxes, and extra fees, and cutting corners. The attacks have already resulted in the wasting of what meager resources there are.


Posted by anonymous, a resident of Duveneck/St. Francis
on Sep 7, 2013 at 5:21 pm

@ Parent, how about the 150K spent on the PR officer be spent instead on services for such ill children as this one, who appear to be striving to get ahead for their own and society's sake. There is money. I don't think the story reflects very favorably on PAUSD and it does reflect well on the student and his family. Sorry you are displeased about that.


Posted by parent, a resident of Greendell/Walnut Grove
on Sep 7, 2013 at 5:34 pm

Anonymous, Yes, the 150k salary is being spent as the result of the constant attacks under which district employees must try and perform their jobs. As a volunteer in this community, some of the projects I have worked on have also come under attack from people who have no idea what they are talking about, but are very happy to sling blame and criticism rather than do anything constructive. I can say from experience that it is very hard to do anything while under this kind of siege. It is destructive, and it will not improve things for the students or anyone else. The district is not perfect. Its employees have their faults, but the attacks only distract people from doing the jobs you are complaining about. [Portion removed.]


Posted by Grateful reader, a resident of Adobe-Meadows
on Sep 7, 2013 at 5:56 pm

I want to try this at work. "Hey manager, you can't criticize my poor performance even though I make almost 300k per yea because if you do I'll get flustered and do even worse. And that will be your fault. But I do have idea. Hire me a PR person and she will help me make sure that you do t notice when I screw up the next time." Problem solved.


Posted by Parent, a resident of Greendell/Walnut Grove
on Sep 7, 2013 at 6:06 pm

Hey Grateful, And yet, you aren't the manager.


Posted by Esmeralda , a resident of Crescent Park
on Sep 7, 2013 at 6:19 pm

[Post removed due to same poster using multiple names]


Posted by parent, a resident of Another Palo Alto neighborhood
on Sep 7, 2013 at 6:30 pm

The hospital school is actually run by PAUSD. Unless the student in question was hospitalized for long periods of time, it probably wasn't the best choice for him. You can look at what they offer here: Web Link
I also find it hard to believe that the parents of this child did not know about this program. All it would take is a question about what do we do about school when my child is ill.


Posted by Esmeralda, a resident of Crescent Park
on Sep 7, 2013 at 6:44 pm

[Post removed.]


Posted by Parent, a resident of Greendell/Walnut Grove
on Sep 7, 2013 at 6:47 pm

[Post removed.]


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