Guest Opinion: Catastrophic illness and educational catastrophe | October 18, 2013 | Palo Alto Weekly | Palo Alto Online |

Palo Alto Weekly

Spectrum - October 18, 2013

Guest Opinion: Catastrophic illness and educational catastrophe

by Elijah and Leslie King

Walking onto the Ohio campus last winter, Elijah celebrated the realization that his life was merging back toward the journey he had dreamed of and relentlessly pursued. A dream so ordinary for Gunn High School students, but for him, it was like a rainbow that moved out of reach for four years of high school, because of late diagnosed IBD, Crohn's disease. At that moment, achievement took on a whole new meaning.

Without a doubt, the physical and mental health of our children is paramount. And what becomes critical during illness is normalcy and constancy wherever they can be found. Along with family and community, children find normalcy in education. Children yearn to be at school, to be part of the culture of learning, socializing and growing. It is natural that our son's education became a key part of his ability to see his life beyond his illness.

For most of his years at Gunn High School, Elijah suffered unpredictable flares of gut-wrenching pain and debilitating symptoms caused by a severe, chronic disease, eventually diagnosed as Crohn's disease. This caused repeated, short hospitalizations and went from weeks to months of inability to be at school. Per federal law supporting the rights of disabled students, he had a 504 plan. However, it contained vague suggestions for flexibility, extra time and independent study. And despite help from devoted individuals, the general implementation was fragmented. He had barely five hours a week of low-quality academic support, and no one from Gunn or the Palo Alto school district was coordinating his complex situation. Sadly, we know from talking to teachers and parents of sick children that our son is not alone in this experience in the district.

It was left to our family to coordinate and advocate as if we were the first family to face this challenge. Although we have experience in advocating for healthcare and education, nothing prepared us for this overwhelming situation. We were focused on Elijah's medical crises, education and working full-time jobs. We naturally looked to Gunn for guidance, resources and advocacy.

After three years of fragmented support, Elijah felt it was time for him to speak directly to the Gunn administration. In Elijah's own words:

Sitting in the Gunn principal's office, 2012, the summer before what was supposed to be my senior year, I felt more lost than ever. For 30 minutes the principal politely listened as my mom and I listed the problems and obstacles to my education.

We reminded her that federal law and my 504 entitled me to educational services that would provide me with an equitable education. We asked for her help to improve the services from Gunn and keep me on track to graduate with my friends. I fully expected the principal to help me, advocate for me, take an interest and ask the district for increased help.

This help could start with improving the quality and quantity of home-based instruction from five hours to 10 hours. We asked that the math software program be replaced with current, reliable software with explanations. We asked for funds to help pay for a private physics class already pre-approved by the Gunn physics coordinator.

After all of this, she calmly explained that if I wanted all of these things then I should look into "alternatives" to Gunn. She stated that if a kid needs more help then they should be on campus and in the classroom. The fact that I was chronically ill and unable to attend class on a regular schedule was given little consideration. She made it clear that the district had nothing different from the past three years to offer me. My hopes to share the graduation stage with my friends disappeared."

Gratefully, Chris Kenrick's recent Weekly article ("Arduous educational journey," Sept. 6, 2013), shed light on this painful journey. In the article, the PAUSD public-relations response simply listed the options they provide, but did not address the quality of services, outcomes or Elijah's personal experience. We invite the district to meet with us and hear our full story. Because education of the chronically ill is a complex issue, it cannot be fully covered in this 1,000-word opinion piece. Therefore, our focus is to ask the district to learn from experience and improve its services to its medically fragile population.

Being a leader in education, the Palo Alto district could utilize its ample financial, medical and academic resources to do the following and much more:

* Hire a coordinator to create an integrated program charged with designing and implementing individualized educational plans for each of its medically fragile students.

* Parents who desperately need someone with knowledge of the system and the power to implement solutions would have someone to talk to and guide them.

* When a child or hospital reports to the home school, the district would direct them to the coordinator who has knowledge of the student's medical accommodations, with full access to teachers, tutors, independent study, the Hospital School at Lucile Packard and private school options.

* The student coordinator would inform families of their rights and options. With full consideration of the student's circumstances, they would set up school-based, home-based, Hospital School-based education or some combination thereof.

* The Palo Alto coordinated program would provide paid instructors for up to 15 hours per week at home, school or hospital and be available by phone if necessary.

* The Palo Alto coordinator would track the student's progress towards graduation, facilitate communication and connection to the educational community.

* If needed, the district would acquire funding for students to take courses at private institutions, when their illness prevents them from fulfilling graduation or college requirements.

Possessing the key elements, the Palo Alto district is in position to build an exemplary program, to serve as a model to other districts and to inspire future state funding for such programs.

We hope this article results in expeditious improvement of services to this minority of our valuable students. This is their childhood and there is little time to waste. If you agree, please call or write to encourage the district, the board, your local school and write the Palo Alto Weekly.

Elijah King is a freshman at Ohio University, Patten School of Education with a special ed emphasis; Leslie King is his mother.


Posted by You Are Brave, a resident of JLS Middle School
on Oct 19, 2013 at 7:23 pm

It is very brave of you to come forward and speak openly to help other students. PAUSD Special Education has spent the last 2 years trying to reduce the number of disabled children who qualify for services needed to get an education. One way to do this is to put children on a 504 Plan like the one referred to above, which lacks enforcement. Some of the items you suggested are supposed to exist, but not equally for all disabled students, as you accurately indicate. If students are on an IEP plan they should receive services and have a case manager at the school. However, at many schools these professionals are only available part time, and are not on campus the entire school year. Seldom does staff know a student's needs from previous years, so students have to repeat suffering each year and convince schools they need help. Special Education tells parents better services are only offered at middle schools and high schools. Sounds like this is not accurate.

Special Education's plan is that all kids must be in mainstream classrooms at a neighborhood campus. If a student's medical needs do not fit that plan, too bad. The way the principal spoke to you is not uncommon. As the piece so accurately portrays, suffering families and children are treated with disdain and made to feel guilty for having disabilities by those in PAUSD paid to educate them. They blame students for being bullied, for needing help. Special Education does not train it's staff, teachers and principals in how to speak to students and parents. Instead they condescend to the disabled and treating all families as if they were 4 years old. You'll get lots of overdone eye contact, false smiles at inappropriate moments like when trying to get an answer to when staff will show up, but there is no real professionalism. It's easier to do a poor job and blame disabled students, they are vulnerable and it's difficult to defend themselves. Fortunately, the good people of Palo Alto do not feel this way, even if their school district does. Every child needs help in some way and needs resources at some time, and I have never meant a taxpayer in Palo Alto who begrudged disabled students help.
Thank you again for stepping forward to make things better for the students who come after you.

Posted by Concerned parent, a resident of Barron Park
on Oct 19, 2013 at 8:22 pm

When my child got mentally ill, we requested home-school, and it was a bunch of crap. One of those substitutes from PAUSD would come about one hour, keep an eye, in what is going on at our house, go and report to the district, but really never help our child academically. Also, he would say, he was a meeting with the district would not show up some days, and never paid back for the absentee. It was nothing but a joke. Our hands were tied. At points it felt like it was better that they would not come at all. It took time and organization for us to have our child ready for the lesson, by the time she took out her materials checked homework, it was time for the "teacher" to leave. This definitely needs big improvement, and real academic support for our sick children, not just pretending. People who work with sick children should have a credential and should have professional training dealing with sick people.

Posted by Gunn Parent, a resident of Gunn High School
on Oct 20, 2013 at 3:53 pm

The Gunn principal Katya Villalobos is known to be a low performer. I would interpret your experience as a reflection of that rather than a specific lack of ability in dealing with sick kids. Your position description already exists and is filled by holly wade. The right solution to that problem is to find a better director of special education not to create a new position to compensate for wades and Villalobos's failings. Ultimately thought your experience reflects a lack of concern about special education on the part of Dr. Skelly and the board. Best of luck with your education. Had you sued the district for violating your rights you wold likely have prevailed and could have paid for any tutoring you might need to remediate Gunns failings while in college.

Posted by You Are Brave, a resident of Fairmeadow School
on Oct 20, 2013 at 3:55 pm

Wow! @Concerned Parent - reading your post brought back all the bad memories of working with PAUSD para-professionals: the no shows, not completing the hours assigned, constantly cancelling at the last second, no make up hours, and saying they were a teacher when they had no credential. Maybe it's a way to not hire credentialed teachers, who cost more. When they were supposed to go to the school the teachers said they rarely showed, stayed only a couple minutes but didn't help the child, went to multiple classrooms although the hour was assigned to one child. They did show up up for Special Education meetings and interrupted work with a child to answer Special Education's calls, so Special Education said they were great. We couldn't get Special Ed to fix things, their response was the para was expert, and was all kids needed since the para reported that. We couldn't get copies of the reports paras made to Special Education. Like you, our hands were tied since there was no supervisor to contact because they were independent contractors who were supposed to be fully independent and professional, no office location, changing phone numbers, the para's policy not to tell families schedules until one night before. At that late point if the hours didn't work around the child's disability, they lost them. Other families we asked said they gave up, rather than fighting they told District to stop coming. You are right, it was better to have nothing than what PAUSD provided. We will wonder forever if our child's educational and emotional failures relate to this, if it all could have been prevented at a much lower cost, both dollar and emotional, than what the District is paying for now. PAUSD wants to move toward using cheaper aides and substitutes to teach kids instead of credentialed teachers. PAUSD doesn't measure quality, effectiveness, even attendance or if hours were fulfilled, so there is no metric to know if it's working.

Posted by Lumpy Information, a resident of Fairmeadow
on Oct 23, 2013 at 6:07 pm

During the last Board of Education election candidates publicly blamed mental health costs for being unable to educate special needs students. Special Education also make these statements. State mental health costs don't really relate to not teaching a child with a reading disability how to read. Not all disabilities are mental health related, some do have that component but not all. PAUSD lumps all students together, and it could create excuses and blaming disabled kids for lack of services, when it really is due to bad management. It would be better to see an accounting for the millions given the school district by the State to handle mental health, and handling of moneys from shutting special needs classrooms but not invested in neighborhood schools for the kids (based on lack of services). Which are mental health costs, which are other? Handling mental health is a tough job. PAUSD could be doing a great job with the most effective approaches. It is hard to know, since PAUSD doesn't measure the success of this path. They will only say they succeed.

Posted by Gunn Parent, a resident of Gunn High School
on Oct 23, 2013 at 7:33 pm

Not all candidates said this. Just the ones who won, and now you see the results of that. Lack of concern for special education, lack of transparency, lawyering up, suing families, abandoning sick kids to "other alternatives," in the words of principal Villalobos. If the people get the government they deserve, what do the special education children of the people get and deserve?

Posted by Elections, a resident of JLS Middle School
on Oct 28, 2013 at 8:30 pm

I don't think voters knew, some candidates represented themselves as being knowledgeable about Special Education when they are not. Candidates with kids on an IDP don't see what it is really like for a child on an IEP or struggling with mental illness. The Board and Special Education Office needs to stop blaming children with mental health needs for every deficiency in Special Education services. They should not say anything instead of repeating Special's Ed's silly claims of astounding success. It is almost like the Board thinks they work for Special Education Office instead of the other way around. Special Ed's claim they achieved full inclusion from day 1 of the school year is an absurd claim to make that should have brought red flags. Special Education's problems are due to their very poor management of resources at the school sites by the Special Education Office, not from any one disability. Anybody could have sent kids to neighborhood schools, that is not an achievement. Special Education failed to lead it's staff and resources - to get the staff out to the schools for full inclusion, to make clear to schools what to do, to train staff. Schools think they are supposed to pull kids off IEPs and avoid providing appropriate services. Neither Holly Wade nor the Board of Education teach, but they believe they are qualified to tell teachers differential teaching is the panacea. How can a teacher instruct a child to learn to read with the same techniques that haven't taught the child all through school, while dealing with children suffering from mental illness and cognitive disorders? Hire more contractors reporting to Special Education without accountability.

Posted by Reduce Referrals Goal, a resident of Jordan Middle School
on Nov 2, 2013 at 1:13 pm

Middle School Single Plans for Student Achievements (SPSAs)report lists a goal for Jordan Middle School:
"ACS Referrals. Reduction in the number of ACS referrals." (page 9)
ACS is Adolescent Counseling Services. This is mental health services for middle school. Does this represent a denial of mental health care to kids who need it? The report says it was presented to Board of Education 10/22/2013, it is to be approved at 11/5/2013.

Posted by palo alto resident, a resident of Embarcadero Oaks/Leland
on Nov 3, 2013 at 9:25 am

@Reduce Referrals - if the goal at Jordan is to reduce ACS referrals by improving the school climate, that is a good one. I doubt Jordan is trying to deny mental health care to students, just reduce the need for it. ACS counselors are only interns anyway, so they mostly deal with kids that just need to talk and problem solve. Any serious mental health issues would be handled by the school psychologist.

Posted by Reduce Referrals Goal, a resident of Jordan Middle School
on Nov 3, 2013 at 2:22 pm

@palo alto resident - I hope they are taking your perspective, to improve school climate which will lead to reduction in referrals. I am looking at it from the perspective of watching Special Education's abruptly stop services and then saying children don't need them anymore. We have seen this in preschool and elementary levelschools, middle school may be different. Special Education claims they succeeded in kids not needing services by denying them the services. Poof! It's magic! At the Board of Education presentation Dr. Wade (Director of Special Education) said she achieved full inclusion from the first day of school for all children placed in neighborhood schools, it's doubtful since some elementary schools didn't have any Special Education staff or services the first day of school, or the first week, or in some cases many weeks and months. They have told us over many years they don't plan for school services to start or staff to be hired the first 3 weeks of school.
I am fearful when I see numerical goals like the ACS reduction, it is easy to reach these goal numbers by not making referrals. Special Education can easily do this by denying children IEPs and services. The practices cannot be based on evidence or data because of the flip flop in policies from year to year. One year our school tells us children do not need aids anymore because Holly Wade said it is truth. Then the next year the school says kids must have aides and differential teaching, meaning the aides will now be teachers and that is how disabled children learn, since that is what Holly Wade told them is truth this year. When she brought in Richard Villa to train parents on inclusion, he instead gave a sales talk to promote the policy Special Education had already decided on. Jordan's report says they use Villa as a consultant, I hope he does more for the consulting contract taxpayers pay for than a sales talk.
School psychologists help for students could vary widely from school to school. At elementary school teachers wonder out loud what the school psychologists does, outside psychologists complain they don't respond to questions and reach unsupportable conclusions. They seem to only do testing. We have not seen them provide therapy, only evaluate. They told us if a child needed services, they would have to go elsewhere and be referred to an outside service. If there are numerical goals to reduce outside services, a child will not be able to access help. There may be a better safety net for students at some schools, I hope so.

The middle school reports look great and, unlike Special Education's report, is goal and data oriented. I have more trust in what the middle school principals say than in what Special Education says. At least the middle school principals are being honest that problems do exist. You can't solve or improve a problem you say does not exist the way Special Education does.

Posted by village fool, a resident of another community
on Nov 13, 2013 at 4:07 pm

@King family - Thank you for graciously sharing your story. I think that you may agree that, unfortunately, your insights may go well beyond catastrophe situations. Some of your insights may possibly be applicable to a bigger chunk of the population.

Wishing you the best of health, and that your kind consideration of others which had you step forward will be rewarded by others’ kindness

village fool

(The above is part of my blog posting where I also addressed backward/reversed processes, my perspective that these currant processes/occurrences are not disconnected from the story above - Web Link)