May and June comprise their own special season, not ruled by changing tides but rather by school calendars: prom season. The focus of coming-of-age movies, from Pretty in Pink to Carrie, prom is a rite of passage in our society, but for some teenagers, whose lives consist of hospital rooms and doctor visits, it’s as intangible as Cinderella’s ball. The Fault in Our Stars barely scratches the surface of life as an adolescent with a life-threatening illness.
Traditional prom isn’t the only thing missing for these kids
That’s why once a year volunteers at Lucille Packard Children’s Hospital transform the cafeteria into underwater kingdoms, pirate adventures, and spaceship odysseys, to give patients of all ages and their siblings a very unique prom experience. For one night the children at the hospital get to forget their illness and have fun like other kids their age. However, a traditional prom isn’t the only thing missing for these kids. Many of them also miss out on having a traditional educational experience as a result of being unable to attend school regularly. Unfortunately, this usually means that they are receiving an inferior education when compared to their peers’.
There are no formal guidelines as to what “individual instruction” entails
Although the California Department of Education states “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 ,” there are no formal guidelines as to what “individual instruction” entails. Not only do K-12 school programs in hospitals fill the gap in a child’s education while they are ill, but they also create a sense of normalcy and routine. To the 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 under-supported by legislature.
Hospital school programs scrounge funding from the school district, the hospital, and private support. The amount of funding received varies widely, and it dictates 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 it requires teachers who have a science background. In addition, the limited resources available can prevent hospital school programs from developing curriculum that meets state standards for high school graduation, making it difficult for students to fulfill graduation requirements.
In addition to the lack of funding, very little legislature exists to provide support for hospital school programs. Even the amount of time before a child 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 each year, which is why this population is usually GED-bound .
No child left behind?
For these children, their parents, and their doctors, education may be an after thought, as many of them have 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” policy, we are leaving behind an estimated 15,780 children diagnosed with cancer , 15,000 children with cystic fibrosis , and 1,800 children receiving organ transplants  annually in the U.S., and there are numerous other children that must receive a non-traditional education in a hospital setting due to health conditions not included in these statistics.
We are doing these children a great disservice by putting them at a disadvantage for graduating high school or attending college, and we are doing ourselves a disservice by not preparing them to become productive members of society. Only 24.4 % of adults diagnosed with cystic fibrosis have a high school degree, compared to the national average of 90% [6, 7]. Adults with a high school degree earn approximately $10,386 more annually than those without a degree, and adults with a Bachelor’s earn approximately $36,424 more .
These large gaps in earning potential translate to a higher percent of young adults (18 – 24 years old) without a high school degree living in poverty (31%,) compared to 24% and 14% for young adults with a high school or a Bachelor’s degree, respectively . Adults who do not have a high school diploma also have a harder time finding employment; 12% of adults lacking a high school degree were unemployed in 2012 compared to the national average of 8.1% .
We are saving these children to have a life
The number of children who are surviving childhood illnesses is increasing as medical advances are made. In the 1950s, cystic fibrosis was a death sentence, and children who faced this diagnosis would not survive to attend elementary school. However, children diagnosed with cystic fibrosis today may live into their fifties and sixties . Similarly, the five-year survival rate for pediatric cancers has risen from 50% in the mid-70s to 80% today [12, 13]. Thankfully more and more children affected by childhood illnesses are entering into 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 left out of the conversation. We need to address the barriers that make education inaccessible to children who experience a non-traditional education due to illness. After all, we are saving these children to have a life, but what kind of life are we offering them?
This op-ed article originally appeared in Education Week: Published Online June 26, 2015, www.edweek.org
1. California Department of Education. Home and Hospital Instruction. Retrieved from http://www.cde.ca.gov/sp/eo/hh/cefhomehospital.asp [23 April 2015].
2. Personal communication with Kathy Ho, a teacher at Lucille Packard Children’s Hospital.
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