When a child has a mental health diagnosis or cognitive issues related to medical treatment, the effects are felt in all parts of the child’s life. Medical providers and psychologists can treat the child and work with the family, but what about the child’s schooling?
With support from Jabil, Johns Hopkins All Children’s Hospital recently created and staffed a new position to bridge the gap between hospital care and patients’ schooling. In 2018, Jabil made a five-year, $1 million gift to establish the Jabil Inc. Center for Behavioral Health Fund at Johns Hopkins All Children's Hospital. Last year, the hospital used some of those funds to hire Kimberly Swan as the first Educational Liaison for the Center for Behavioral Health (CBH). She works with families and school systems throughout Florida to support Johns Hopkins All Children’s patients who have cognitive, learning, or emotional concerns that affect their quality of life and schooling.
“Our providers who work with these children have been highly trained in medicine or psychology, but they often don’t have the knowledge or time to be able to communicate with the schools in the same way that Kim can,” says Jennifer Katzenstein, Ph.D., director of psychology and neuropsychology at the hospital. “Serving as a liaison between the hospital, the family, and the school, Kim can ensure that the insights gained from the child’s evaluations are put into place and that the child receives the best possible education plan in the classroom.”
A Wide Range of Issues
Children served by the program have a variety of conditions, from a diagnosis on the autism spectrum or another mental health illness, to effects on cognitive functioning due to chemotherapy, epilepsy, traumatic brain injury or other medical condition. The key players — family, school and health care providers — all bring different perspectives as they work to help the child. The clinical diagnosis might be something relatively familiar to educators, such as autism, or something very unfamiliar, such as a rare disease. There may be an individual education plan (IEP) to consider. The child might need English as a second language (ESL) instruction in school, or the family might need translation from English to their native language in school meetings. With so many elements in play, effective communication is key.
“My job is to help families and schools communicate about the needs of the whole child, versus one aspect of the child,” Swan says. “My work really is in some ways like being a mediator. I bridge between the family and the school, and each side may not fully understand what the other is saying about the child. I’m also representing the providers here at the Center for Behavioral Health, so I’m aware of the medical condition and the child’s evaluation results.”
Swan brings all that information together to create a comprehensive profile of the child for school, family and other providers, often relying on her 30 years of experience in special education to help facilitate communication.
“When I’m talking to the school, I make sure they’re getting a comprehensive picture of the child and how his or her condition would look in the school setting, not just hearing a diagnosis,” Swan adds. “Also, schools tend to use a lot of educational jargon and not realize that parents may not understand what they are saying, so I do a lot of translating, so to speak. Sometimes, I am educating providers, too.”
Everything Starts with Listening
Swan’s work with a family begins when a referral is made from a Johns Hopkins All Children’s provider. The child may be undergoing medical or psychiatric treatment or may have recently completed treatment. Sometimes a child who is doing poorly in school is evaluated at the hospital and diagnosed with a learning disability. She works with children from age 4 to 19, or older if the child is still in school.
After having an initial meeting with parents and evaluating information from the hospital’s providers, she determines what the child’s needs are and whether she can help. She establishes goals with the parents and begins to work toward meeting those goals.
Sometimes her work is simple: She makes a plan with parents and then they follow those steps and report back. In other cases, the need may be much bigger. Perhaps the child’s situation is more complex. The family may be overwhelmed by the situation or feeling like they are not being heard at the school.
“We work with very sick children here,” Swan says. “The parents are juggling a lot and so is the child. In those cases, I’m spending a lot more time with the family and typically speaking directly with the school.”
Since starting at Johns Hopkins All Children’s in March 2019, Swan has served nearly 120 families. She says there is no typical length of engagement, but she usually is in contact with a family five to seven times over a period of two to three months.
“My job is to be with them a relatively short term so that I can educate parents enough to help them feel empowered,” Swan says. “My goal is for parents to have enough confidence to talk with schools themselves, to self-advocate for their child and feel good about doing that.”
Grateful Families and Schools
The response to the Educational Liaison position has been overwhelmingly positive.
“One thing we hear a lot is relief that families and schools feel having a liaison they can work with,” Katzenstein says. “Parents feel more positive about their ability to work with the school and get their child what is appropriate. The schools see us as someone they can to talk to, that wants to help their students. It helps the hospital build community relationships we wouldn’t have had otherwise.”
Despite the obvious benefits, a dedicated liaison between family, school, and hospital is a rare thing. During her 30-year career in special education, Swan never saw a position like this in Connecticut or Massachusetts, where she worked until recently. Katzenstein says she is unaware of any similar position in Florida. Because this kind of liaison work is not reimbursed by health insurance, however, grant funding was essential.
“We couldn’t have created this position without Jabil, and we’re very, very grateful,” Katzenstein says. “We want our patients to have the best quality of life possible. Kids spend so much of their time in school, it needs to be a place where they feel good and can feel success.”
“When a child has a mental health diagnosis or learning concern, it’s a situation that has so many different parts — the diagnosis, an IEP, maybe the need for ESL — but we need to look at the whole child,” Swan says. “When I see what these children and families go through, every day I come to work with the hope that I will be able make a difference."