Pay it Forward
Thank you for allowing our agency to share your web site with other parents who've contacted our agency for support in order to learn their child's right to appropriate supports and services....
August, 2004
Dear Ellie,
It is my pleasure to share a success story with you. Some five years ago I had found your web site through a search in a time of crisis. When my daughter, Rosa, was only 13, she was diagnosed with end stage renal failure and her only treatment option was a kidney transplant. This sudden onset of disease created an urgent need for an appropriate educational plan. Rosa was hurriedly prepared for transplantation surgery, June of 1999. Rosa recuperated over the summer and returned to school in the Fall for 8th grade and the school team refused IDEA eligibility and instead chose to develop a 504 plan for her.
Unfortunately, medication side effects, insomnia, tremors, migraines, anemia and reduced stamina and vitality resulted in very sporadic attendance. My daughter, who had maintained mostly A's prior to surgery, quickly saw a decline in her grades. In fact, we began to have real struggles to maintain contact with classmates, contact with teachers, a feeling of connection with her school. The school staff failed to fulfill their responsibility to have a copy of notes faxed home so that Rosa wouldn't fall behind. For a child this age to have a devastating health condition along with removal of support for her educational needs was very emotionally difficult to say the least.
Rosa found it impossible to keep up with the course work and often she wasn't given the same materials the rest of the kids attending school received. In desperation, I began to search online for legal support so that I could approach the school 504 team about her educational and health needs.
I am so thankful to have found your web site and emailed you immediately. You responded right away and if you recall, even did a phone consultation to get things started. Your kind and supportive guidance took me step by step through the process of collaboratively developing a individualized health care plan that provided the support Rosa needed in order to have access academically. I ordered several of your helpful articles and especially the one about missing school seemed to really help the instructional staff to see the need for the level of support we were requesting.
Mid-year, one of Rosa's teachers noticed she seemed shaky and acted strange. Rosa was walked by the teacher and another student, wobbly down to the office. The office staff, minding the health condition, knew they shouldn't put Rosa in the nurses office, as she was immunosuppressed. They walked her down the hall to an empty office and let her rest there. They tried to reach me, but I wasn't reachable. They failed to then page the school nurse or my husband or call 911. It was three long hours before they finally reached me. I rushed over to the school and found her almost unable to walk at all. I drove her straight up to the hospital where she was admitted with a severe drug interaction that was truly life threatening.
We decided then and there that 504 would not support her needs. Three days later, when Rosa recovered I had already called for an IEP meeting. The IEP team found her eligible for special education supports and services and her IHP was rewritten with the careful guidance of Rosa's treatment team at the hospital. I would not consent to that IEP unless the doctor also signed.
Over time, Rosa still had to endure some issues of noncompliance but none was life threatening. (I didn't begin to list to you the variety of noncompliance issues, tops of which was her exclusion to be included in the 8th grade trip to Yosemite as a reward for good grades. The refusal of the school staff to be responsible for administration of medication during the school day, after school sports activity.)
We've truly appreciated the ability to go online for your articles. When I was told that the high school district had no nurse at all for five high schools, it was your resources that I turned to again and after approaching the superintendent, a registered school nurse was hired immediately. That school nurse was so instrumental in training the staff at Rosa's high school to understand kidney transplant patients and the types of accommodations she'd need. Eventually, Rosa learned to self-advocate and by her senior year, she was fully capable of running her own meeting.
Her last month of high school she exited herself from IDEA eligibility and moved back to 504. That plan followed her to college this month. I wanted to personally thank you for your great site and information. Your helpful articles give the staff at school a new perspective of my health-impaired child. In hindsight, we find that most of the noncompliance comes from staff simply misunderstanding the need for the requested supports. Once they'd read your articles on the specific topic aligned to the problem, they usually would come through for us. Thank you for providing this resource for Rosa.
Now that I work for a Parent Training and Information Center, I have an opportunity to share this great information with parents who contact us for support in obtaining appropriate education programs for their health-impaired children. Thank you for allowing our agency to share your web site with other parents who've contacted our agency for support in order to learn their child's right to appropriate supports and services via 504 and IDEA and an appropriate and supported Individualized Health Plan.
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