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Children With Severe Illnesses Deserve a Real Education

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May and June make up their own special season, one ruled not by changing tides and lengthening daylight hours, but rather by school calendars: It’s prom season. Prom, the focus of so many coming-of-age movies for young adults—from “Pretty in Pink” to “Carrie”—is a rite of passage in our society. But for some teenagers, whose lives consist of hospital rooms and doctor visits, a prom experience is as intangible as Cinderella’s ball. Last year’s hit movie “The Fault in Our Stars,” based on John Green’s best-selling young-adult novel about a star-crossed teenage couple, barely scratches the surface of what it’s like for a young person to face a life-threatening illness.

That’s why, once a year, volunteers at Lucile Packard Children’s Hospital Stanford, in the San Francisco Bay Area, transform the hospital cafeteria into underwater kingdoms, pirate adventures, and spaceship odysseys, giving patients of all ages and their siblings a one-of-a-kind prom experience. For one night, the children at the hospital get to forget their illnesses and have fun like other kids their age.

Sadly, a traditional prom isn’t the only thing missing in the lives of these kids. Many of them also miss out on having a traditional educational experience because they are unable to attend school regularly. As a result, they are receiving an inferior education when compared with their peers.

“In the age of No Child Left Behind, we are leaving behind each year an estimated 16,000 children diagnosed with cancer, 15,000 with cystic fibrosis, and 1,800 receiving organ transplants in the United States.”

According to the education department in my home state of California, “any student with a temporary disability that makes attendance in regular classes or another education program impossible or inadvisable must receive individual instruction provided by the student’s school district.” Unfortunately, there are no formal guidelines on what “individual instruction” entails. K-12 school programs in hospitals are supposed to fill the gap in a child’s education when he or she is ill, but they should also create a sense of normalcy and routine. To their teachers, these aren’t “sick kids.” They’re just kids. Yet, despite the important role these programs play in educating our children, they remain vastly overlooked, underfunded, and undersupported by legislators.

Hospital school programs across the country scrounge funding from their school districts, hospitals, and private support. The amount of funding received varies widely, dictating the number of teachers and the quality of facilities available. Some hospitals have no classroom space, no computers, and only one teacher. Science education is particularly vulnerable to the lack of funding, because hands-on science activities tend to be more costly and require teachers who have a science background. The limited resources available can prevent hospital school programs from developing curricula that meet state standards for high school graduation, making it difficult for students to fulfill graduation requirements.

In addition to the lack of funding, very little legislation exists to provide support for these programs. Even the length of time a child has to wait before he or she is offered schooling can vary from 48 hours to 10 days. For a child with cystic fibrosis, who has to seek treatment four or five times a year, this can mean missing up to 50 out of 180 school days, which is why this population is usually GED-bound.

“[P]opulations of children who are separated only by the boundary of a hospital wall are being excluded from the [education] conversation.”

It is true that for these children, their parents, and their doctors, education may be an afterthought, as they are facing life-threatening illnesses. However, we should still strive to provide them with a full and rich childhood experience and a quality education. In the age of the No Child Left Behind Act, we are leaving behind an estimated 16,000 children diagnosed with cancer, 15,000 children with cystic fibrosis, and 1,800 children receiving organ transplants annually in the United States. And there are many other young people who must receive a nontraditional education in a hospital setting because of health conditions that are not captured by these statistics.

We are doing these children a great disservice by making it more difficult for them to graduate from high school or attend college. And we are doing ourselves a disservice by not preparing them to become productive members of society. It has been well documented that recipients of high school diplomas and college degrees benefit from a discernible, long-term boost in earning potential and employability.

While many children with illnesses once did not survive into adulthood, advances in medicine are permitting these young people to live much longer. In the 1950s, cystic fibrosis was a death sentence, and children who faced this diagnosis would not survive to attend elementary school. In 2012, the median age of survival for people with cystic fibrosis was 41.1 years, an increase of almost a decade in life expectancy just since 2002. Similarly, the five-year survival rate for pediatric cancers has risen from 58 percent in the mid-1970s to more than 80 percent today.

Thankfully, more and more children affected by childhood illnesses are entering adulthood, which is why we need to make sure they have the same opportunities as other young adults. Education is a huge topic of discussion in the United States. The concern for education stretches from our own backyards to rural areas in third-world countries. However, populations of children in America who are separated only by the boundary of a hospital wall are being excluded from the conversation. We need to address the barriers that make education inaccessible to children who experience a nontraditional education because of illness. After all, we are saving these children to have a life, but what kind of life are we offering them?

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