Making the Grade at the Bedside

December 10, 2019 by Tracy Vogel

All Children’s Hospital’s Patient Academic Services program helps children facing serious illnesses stay on track with their education

Joel Ramos couldn’t see a way around it. He was going to have to pull his son out of ninth grade.

Neftali Garcia struggled with his online classes during his months-long recovery from a bone marrow transplant. The computer-based classes that substituted for his regular school seemed focused on serving a large group. Ramos watched Garcia cry out of frustration with the format, his inability to quickly ask questions, and his dropping grades.

That’s when Ramos reached out to Patient Academic Services at Johns Hopkins All Children’s Hospital (ACH) in St. Petersburg, Fla.

“The doctor told us to not put pressure on [Neftali], and that’s exactly what he was having with this online school,” Ramos says.

This is a familiar story to Kristin Maier, ACH’s director of child life, music therapy, and Patient Academic Services. The state of Florida offers services ranging from remote learning to teacher visitations for children who can’t physically attend school. But sick children have needs that often require tailored solutions.

A woman pushes a cart full of books, games, and other educational materials through the hallway of a hospital on the way to see a patient.
Visits from teachers like Jessica Hollingsworth can be a welcome break in the day for children used to a parade of doctors and nurses.

That’s where the ACH Patient Academic Services program, which serves about 2,500 people each year, comes in. ACH patients ― as young as 3 through college age ― are facing illnesses such as cancer and treatments such as dialysis. For those in the hospital, the program’s five teachers and one aide provide individual instruction and proctor exams at the bedside and coordinate with their schools. They also offer outpatient tutoring labs at the hospital for children who are healing at home but still need academic assistance.

“Illness during childhood is a high stressor for kids,” Maier says. “It has traumatic impacts on emotional well-being. School is a normal part of childhood, and any kind of normalcy is just gone [when a child is ill].”

Some students can’t go to school at all, while others may only attend part-time. Medication may make concentration difficult, and doctor visits and treatments can interrupt lessons.

“Either [the children] don’t learn because they’re just getting pushed along, or they don’t succeed,” Maier says. “Some can be in the hospital for six months or even a year. Some kids were at end-of-life but wanted to keep doing school because it was normal ― it was something to look forward to and something to hope for.”

Generous Donors Save the Day

Patient Academic Services emerged as a comprehensive program about five years ago, when the single coordinator hired to help sick children and their families navigate the public education system shared their struggles with Maier. The children were only getting, at most, four hours of alternate classes per week, no matter how much school they missed. With paperwork and delays, the children could go six weeks before school services even started.

Maier and her staff went to the state government with a proposal to expand the Patient Academic Services program and received funding. They focused on children undergoing dialysis and cancer treatments in 2016 and built expanded the program to eight educators. In 2018, however, the state funding dried up. Community donors stepped in, raising $450,000 to sustain the program.

“Illness during childhood is a high stressor for kids. It has traumatic impacts on emotional well-being. School is a normal part of childhood, and any kind of normalcy is just gone [when a child is ill].”

Kristin Maier Director, child life, music therapy, and Patient Academic Services

In 2019, the state restored funding to Patient Academic Services, but the program relies on philanthropy to withstand any future state budget issues. Donors include Suncoast Credit Union, the Tampa Bay Buccaneers, Children’s Miracle Network Dance Marathon, and Extra Life. Individual donors, too, make a difference. Through the John H. Moser Trust, Crystal Moser McCormick pledged $100,000 to support Patient Academic Services in honor of her mother.

“My mom used to be a teacher, and I really valued and was blessed to have her to help me when I was growing up,” she says. “When I learned that [ACH] had teachers on staff to try not only to help the children keep up but give them a break from all the round-the-clock doctors, it really spoke to me. I see the kids’ involvement and how much they really look forward to having those breaks with [an education] specialist. It makes their day.”

Additional donors can help bring the program to more children, increase programming, and create an all-day outpatient tutoring program for patients dealing with Crohn’s disease, diabetes, cystic fibrosis, and renal and cardiac issues.

“We’ve learned [children are] equally, if not more, at-risk because they’re living with those illnesses at home without the supports of the hospital,” Maier says. “We would love to have a space somewhere where kids could come all day, every day to be served.”

“We Cannot Describe How Grateful We Are”

Kate Loguercio, a Patient Academic Services teacher, experienced health issues in her youth, so she understands the stresses these children face.

“When they say ‘I don’t like school, I’m not good at it,’ you understand why,” she says. “Most kids don’t have to worry about the things that these kids have to worry about. I try to help them understand this is how it is now, but it’s not always going to be this way.”

She recalls one overwhelmed high school student going through a bone marrow transplant who had fallen a year behind in school. Loguercio worked with his teachers to whittle assignments down to the most critical, transforming an intimidating list into a manageable set of tasks. He graduated on time with his class. Then there was the 7-year-old whose mother still keeps in touch with Loguercio, letting her know he’s now in gifted classes.

“I think he always had that in him, but we were able to foster that love of education at the hospital as well,” Loguercio says.

In Ramos’ case, Patient Academic Services teachers advised him to keep his son, Garcia, in his classes — and they could help. Garcia attended one-on-one tutoring twice a week in the outpatient lab and his grade in math — his most difficult class — rose from a C to an A.

“I showed Ms. Kendall [Williams] and Ms. Veronica [Cetnar] two weeks ago ― ‘Look at the report card! It’s completely different,’” Ramos says. “We cannot describe how grateful we are for the help we’re receiving from these two teachers.”

Garcia now focuses on the future ― on returning to normalcy and to school.

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