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Arduous educational journey for chronically ill student

Original post made on Sep 6, 2013

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.

Read the full story here Web Link posted Friday, September 6, 2013, 11:07 PM

Comments (19)

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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