1Voice Academy – Rationale
Approximately 7 to 10 days following chemotherapy, the blood count drops to the lowest point. A child cannot attend school with low blood counts and often misses 3 – 5 days of school while their counts recover. Depending on the protocol and care treatment being prescribed to the child, chemo is typically administered twice a month. In addition to missing school due to low counts, school is missed due to outpatient clinic visits, scheduled lab work, x-rays, physical therapy and fever. There are external threats that can also determine whether it is safe for a child to go to school. The latest example is Swine Flu. Doctors recommended that children on active treatment stay home and out of school even if they had a healthy enough immune system to attend. We cannot predict when another health crisis will occur and this unknown supports the need for a specialized school more than ever. Pediatric oncology patients miss substantial amounts of school time. If there is a hospital classroom available where the child receives treatment and they choose to attend as an alternative, they are sent back to their rooms if other children with illness participate at the same time. Whenever possible, children on chemotherapy should be encouraged to remain in school. However, depending on the treatment protocol, radiation schedule, blood counts or bone marrow transplantation, patients are not allowed to go to school until medically stable and may require special school services.
Side effects of chemotherapy and radiation therapy have been known to cause developmental challenges, impairments and affect basic functioning skills. Late effects following treatment include: learning disabilities, language disorders, mobility issues, motor planning and sensory impairments. The design intent for the building will keep these concerns in mind, but will address them in a way that is more comforting that an institutional facility.
Children on treatment who miss school, fall behind academically and develop additional resentment regarding their disease and the alienation that it causes. Further, many parents have to stay home and miss work to meet the medical needs of their child. This can lead to intense financial devastation and add to the 80% divorce rate that parents of chronically ill children face. This disease hits and it hits hard.
In August 2009, a Needs Assessment Interview was conducted by Mary Ann Massolio, Pediatric Oncology Social Worker, with oncology parents and patients, to determine the need for a school specifically existing to meet the needs of childhood cancer patients. Parents biggest fear was the exposure on both buses and school grounds to their immune suppressed children. They definitely would co enroll in a school that would offer a safe filtration system for an education in the least restrictive, non stigmatizing setting with a developmentally appropriate curriculum.
Children can be co-enrolled so they can go to their school when medically able, but now would have an alternative to staying home. There is comfort in being with your peers, other oncology students, that cannot be gained in their regular classroom. By working with their schools and teachers, students will have the ability to attend either location, based on how they feel each day. With this option, their parents will be able to continue to work to support the family, while knowing their child is safe and happy in an accepting environment. An additional fear that parents face, is the lack of school nurses in the school system. Many parents keep their children home because they don’t feel there is adequate medical supervision in school. The 1Voice Academy would employ a full time Chemo Certified R.N. to be on site to communicate to parents any concerns that arise.
An after school program offering tutoring, art and music, would allow the children to participate in after school activities as well. The school can be used for family support groups and programs in the evening and week-ends offered by the 1Voice Foundation. The goal is to provide a full day experience as they would have had before starting treatment.
The 1Voice Foundation is the only response to this problem. Our long range goal would include using the 1Voice Academy as a model of replication in other cities.