Educational policymakers “lament the perceived lack of relevant, digestible research that can be used to inform current education policy issues” (Rippner, 2016). What I have seen as both an educator and child life specialist, as well as a parent, is that so often the policymakers are “looking to experts” or are “experts” in areas other than in the classroom, so making policy based solely from research isn’t telling a complete story. Research provides access to data that tells a story often from one perspective, and it’s an invaluable perspective that we as educators need to consider. But this is still an incomplete story without access to the stories from a range of stakeholders – the students, the parents, the classroom teachers and administrators. So often policy is developed because of one side of the story being told, without considering why that story exists or how we can change it in meaningful ways that truly impacts not only the existing data, but those the data is supposed to reflect!
From a child life perspective, my story is often from a very different vantage point than most research reflects. I work with those children who’s medical needs interfere with their ability to learn and to keep up with the same learning pace as their peers. I work with the children who have trouble making friends in school because they aren’t there often enough – or because they look different than their peers or have medical equipment that is either loud or simply noticeable. I work with the children who bring about fear or misconceptions because so often their differences aren’t addressed in classrooms, where the needs for peer support or friendship aren’t approached in the classroom, and where supports to be successful both in school and in hospital (or at home while recovering from invasive medical procedures) aren’t coordinated enough to ensure the child has assistance with their work and resources to complete the work with. When I look at academic policy on supporting medical needs for K-12 students, I see very little that supports classroom needs beyond a resource teacher who may provide push-in supports as little as 30 minutes a week…..or a 2 week window before the district provides in-hospital or home-based supports for students temporarily unable to return to the classroom. Programs such as Monkey In My Chair (n.d.) provided connections between the classroom and the child/patient so that communication and community continue. Research provides insight into the number of children health negatively impacts, but hasn’t shed much light on how we can reverse those negative impacts in meaningful ways. School reintegration is rarely addressed in preventative opportunities, such as how to better support the return of a student to the classroom or to introduce equipment or “differences” in a way that encourages support by peers (Hammond, B., 2010).
Approximately one out of four children will be diagnosed with a chronic illness this year (Compas, Jaser, Dunn & Rodriguez, 2012), while a total of 10% to 30% of children in this country are actively living with and managing a chronic illness (Thompson, 2009). Special education focuses on learning differences, but the Individualized Education Plan each student may qualify for will vary based on the knowledge and advocacy of and for each individual student. For parents and faculty unfamiliar with the uniqueness of each child’s medical needs and the impact of those needs on learning and on developing supportive peer relationships, who is advocating for these needs? Who is establishing policy to ensure the needs of these students are being addressed through general or special education?
Moll, et al, (1992) discussed the funds of knowledge, and how learning can become more meaningful when it incorporates not only the research that is known, but the experiences of those the research is about. The more we understand about why the research shows what it does, not just that it shows something, the more we can establish policy that allows those implementing the policy to better understand their population of students and families and how their experiences are impacting the research being conducted, the better our policies can be in actually changing outcomes! After all, isn’t this the reason we conduct research – to gain insight into phenomenon so that we can impact change??? I wish more stakeholders involved in the creation of policy took the time to understand the phenomenon of “why” – or perhaps those of us with insight into the “why’s” need to be more involved in developing policy!!! Policy needs to address not only the research reflecting the needs of those with medical issues, but also provide education for those expected to advocate for the unique needs of their child – or have someone professionally trained and knowledgeable on the impact of medical issues on academic settings involved in policy development!
Compas, B.E., Haser, S.S., Dunn, M.J., & Rodriguez, E.M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8, 455-480.
Hammond, B. (2010). School Reintegration: Addressing the educational and psychosocial needs of students returning to school after illness or injury, as well as the needs of the teacher or administrator facilitating the reintegration. Lulu Press, Inc., Morrisville, NC.
Moll, L.C., Amanti, C., Neff, D., & Gonzalez, N. (1992). Funds of knowledge for teaching: Using a qualitative approach to connect homes and classrooms. Theory Into Practice, 31(2), 132-141.
Monkey in my Chair (n.d.). Retrieved from http://www.monkeyinmychair.org
Rippner, J.A. (2016). The American Education Policy Landscape. Rutledge Publication: New York.
Thompson, R. (2009). The handbook of child life. Springfield, Il. Charles C. Thompson Publishers