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.
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