By JULIE MINDA
Since last March when Karen Nickoli received her leukemia diagnosis, her parents have been focused on keeping her spirits up and keeping on track with her chemotherapy regimen, tests and meetings with clinicians at The Children's Hospital at Providence, which is located within Providence Alaska Medical Center in Anchorage, Alaska.
Pursuing a lifesaving treatment was the family's priority; but a 10-year-old, even one battling a serious illness, has another important job — learning English and math and social studies. Fortunately, Karen's parents did not have to keep track of the day's curriculum in Karen's fourth grade classroom more than 400 miles away in the remote village of Russian Mission, Alaska. That fell to two teachers employed by Providence Alaska.
The hospital's teachers got in touch with the school, explained Karen's treatment and its likely impact on her ability to focus on schoolwork, they coordinate with the school to get books and lesson information for Karen, they help Karen complete her assignments and keep the school updated on her progress.
Karen's mother, Bernadette Nickoli, has decided that when they return to their family in Russian Mission she will homeschool Karen for the remainder of this school year, and the hospital's teachers are helping with that transition. The plan now is for Karen to return to the classroom in the fall when her immune system is stronger.
The Providence Alaska teachers connected Karen with tutors who are certified teachers from a local charter school to supplement their own teaching when she and her mother moved to their current residence at an extended stay house for patients and their families. Karen now spends about a dozen hours a week studying with adult instruction, or on her own.
"We want to take the burden of focusing on education off of families and ease their way," said Maurice Ballard, a teacher at Providence Alaska, which has 26 pediatric beds and overflow capacity for children in other units. The number of children using the hospital's education services fluctuates. During one week late last month, the two teachers were working with about a dozen children — both coordinating with their home schools and teaching them.
Mandate to accommodate
The federal Rehabilitation Act and the Americans with Disabilities Act both require publicly funded schools to modify and accommodate schoolwork to the needs of children with physical impairments, conditions or learning problems. States impose their own requirements as well. To comply with the federal requirements, schools work with the child's parents and medical providers to develop a "504 plan" that explains the child's diagnosis and determines the accommodations to be made.
Additionally, federal and state laws mandate that elementary and primary schools make similar "individualized education plans" with goals and accommodations for disabled students, including sick and hospitalized children with impairments, so they can access public education.
While neither state nor federal law requires hospitals to provide education services to hospitalized children, many pediatric facilities do. "We do it because we are treating body, mind and spirit," and education is part of this mission, said Dr. Michael Lamacchia, chair of pediatrics at St. Joseph's Children's Hospital, Paterson, N.J.
A heavy toll
Children's ability to keep pace with schoolwork, even with accommodations, will depend largely on their age, developmental level, diagnosis and treatment regimen. According to Vickie Squires, director of the Child Life program and child development at the Children's Hospital of San Antonio, cancer, brain injuries, spinal conditions and cystic fibrosis are among the conditions that can take the greatest toll on children's ability to learn. She said most learning impairments are temporary.
Cindy Fitchpatrick is psychosocial program coordinator at the cancer center at Dell Children's Medical Center, Austin, Texas. She said many children undergoing treatment for cancer experience severe fatigue and have trouble retaining information, paying attention and processing information. Some leukemia treatments impair writing and other motor skills. Many cancer patients experience muscle weakness. These symptoms can make it a challenge to do schoolwork.
Lamacchia of St. Joseph's said many children with neurological conditions also experience weakness and have trouble processing information. Children with cystic fibrosis may miss a great deal of school.
Tailored plan
To help children stay on track, hospitals' education support staff can work with the facility's medical team; the child's parent; and school counselors, teachers or school nurses at the school to customize an education plan. Squires said a child who can't turn the pages of a book may have a plan that calls for audiobooks and other assistive technologies. Providence Alaska has laptops, Kindles and iPads that students can use. Dell's cancer center staff recommends students use Skype and take online classes using iPads and laptops. Fitchpatrick said Skype can be used to stay in face-to-face touch both with teachers and classmates — the patient can view instructions, have teacher assistance or see presentations.
Some education plans allow a child extra time to do assignments or to forgo unessential assignments, said Fitchpatrick.
Emotional drain
Few healthy children are thrilled to do homework, and hospitalized children can face the added motivation-zapping burdens of loneliness and depression.
Nickoli said her daughter, who now is cancer-free and finishing a chemotherapy regimen at Providence Alaska, can get irritated, upset and short tempered because of her treatment, and this can make it difficult for her to focus on schoolwork.
Ballard of Anchorage said of children who have a long-term illness, "They're battling every day, and it's hard for them to see the light at the end of the tunnel."
Shannon Shea is manager of Providence Alaska's Family Support Services, the unit that provides the educational assistance for school-age patients. She said doing schoolwork helps a kid feel like a kid; it provides "normalcy."
Squires said the staff at the Children's Hospital of San Antonio work to ensure that educational milestones are recognized so sick kids don't feel left out. When a child begins his first day of kindergarten at the hospital, staff take a photo, when a patient graduates from high school while in the hospital, staff throw a celebration.
"It's a big deal to have that experience. And, we're all there to share that graduate's moment of self-actualization," said Squires. "That's Christ-like care."
Copyright © 2013 by the Catholic Health Association of the United States
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