When faced with a diagnosis like cancer or frequent hospitalizations for a chronic illness like juvenile arthritis, an algebra exam may be the last thing on a patient’s mind. Schooling can become a serious issue for children facing acute or long-term illness. State of Florida programs such as Hospital Homebound work well for students in other scenarios but often do not accommodate the individual needs or time schedules of sick children.
“I missed one exam and had to take an entire course over,” says Olivia, a bright and motivated 16-year-old diagnosed with acute lymphoblastic leukemia. “This cancer isn’t my whole life. I have plans. I want to stay on track.”
But the ups and downs of her illness, which has gone on for well over a year, make some weeks better than others. A compromised immune system means she can’t always attend classes. She is often physically tired and weak, but mentally she is eager to keep up with school. A test with 50 questions is a lot more exhausting than a test with 10 questions, and a final exam she may not have the energy to take doesn’t have an extension. “Olivia was already ahead in credits when she was diagnosed, so for her not to graduate with her class would be devastating,” says her mom, Katrina.
Helping Means More than Medicine
That’s where Johns Hopkins All Children’s patient academics program plays an important role in patient care. Patient academic services coordinator Alicia Riggs acts as the liaison between schools and parents who are trying to keep their sick child on track academically. Soon after Riggs joined Johns Hopkins All Children’s two years ago, she realized that more than 1,000 patients a year need help with schooling yet were being underserved by a state system that, despite good intentions, was not created to help children facing long-term health issues.
“The Hospital Homebound Program is struggling to make square pegs fit in round holes,” she explains. Different illnesses have different effects on patients. Some only miss a few days or weeks, while others might be out of class for months. Some have concentration issues or physical problems that prevent them from working on a computer long term. Others have the stamina but are given only four hours with a visiting teacher in a week. Special accommodations are rarely possible.
“At some point, you just have to step in and say, ‘What do we have to do to make this work for our children?’ Their parents already have so much on their plates,” Riggs says. “At Johns Hopkins All Children’s, we are treating the most severe cases: those with chronic illnesses and those with life-changing diagnoses like Olivia, a high-functioning kid who’s had a roller coaster of treatments since her cancer diagnosis. She’s so high achieving, she’s the best-case scenario within this difficult set of options that she’s been given. She is finding a way to make it work and get her classes completed—but not all children are able to do it. That’s where we step in.”
Advocating for Others
Riggs hasn’t wasted time. She started by calling representatives from area schools to come to the hospital to see what patients go through while trying to navigate their classwork. School officials sympathized but said they had to work within the framework of the current program. So Riggs took the next step, working with the hospital’s division of government and community relations to write a white paper describing the challenges and including suggestions and solutions. Then it was off to Tallahassee to speak to lawmakers. This effort led to House Bill 585 and Senate Bill 806, which ensure that changes will be considered to state programs affecting hospital and homebound education.
“These bills won’t solve everything, but they are a first step in helping these kids,” says Riggs.
Making It Happen
Riggs is also pushing for more help for student-patients. She successfully applied for a $100,000 grant that will cover the cost of one full-time and one part-time teacher to help patients stay caught up with their schooling while they are hospitalized at Johns Hopkins All Children’s.
“Sometimes you just have to make it happen,” she says. “The grant will help, but it is far from enough. If anyone wants to help us fund a teacher, we could use five,” she adds, only half joking.
Education opportunities for the youngest patients—even before they reach school age—are also vital.
“Right now we have some wonderful volunteers, and we’ve started a reading program to help stimulate babies in the Neonatal Intensive Care Unit that also helps kids up to age four,” Riggs says. “It’s a great start, but there is so much more that we can and will be doing for our children. I’m not going to give up. We’re just getting started.”
The benefits of having advocates in their corner is a lesson Johns Hopkins All Children’s patients like Olivia are just beginning to learn.
To help advocate for better schooling assistance for hospitalized children, visit hopkinsallchildrens.org/voice4allkids