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.
The 1Voice Academy is a grassroots non-profit project that will serve as the first school for children diagnosed with cancer in the United States. The academy will serve children from birth to eighteen years of age. In addition to academic support, the academy will offer programs and services for the entire family. The 1Voice Academy will be designed with the intent of creating a multi-purpose facility accommodating academic and recreational activities as well as psychosocial support. Our Philosophy is that the entire family is diagnosed, not just the child.
The school will provide a healthy, safe environment for children diagnosed with cancer and their families affected by the process of treatment. This space will provide interaction with others in their peer group and will be conducive to positive influences on their behavior, mood and their ability to cope with the affects of the disease.
The design of the property will provide a flexible, multi -purpose space that will serve the needs of the children in the Academy, as well as provide a permanent location for the 1Voice Foundation office and additional programs that we will provide including recreational therapy and support groups. We currently use the Shriner’s Hospital for Children Tampa in the evenings for our Family Support Programs and Bereavement Services.
Using design to create space where all ages will feel comfortable and welcome day and night. A space that may function as an elementary classroom in the day, might be used for music lessons in late afternoon and a small counseling session in the evening. Movable and adjustable components will be a key part of the design of the interior. Color and lightning will be critical, conveying the different use of color to affect academic performance and mood, to make the best selections for the students.
Another important factor in the design of space are the materials being used. They must be compliant with all health and safety codes, including the ability to sterilize all surfaces, as well as providing a non institutional feeling to the spaces. The goal of the design team is to give 1Voice Academy’s occupants the feeling of being at their home, while keeping the health of the users at the forefront.
The 1Voice Foundation has the support of the College of Education and the College of Medicine for our 1Voice Academy project on their campus. Ideally, USF students can participate in internships at our school to work one on one or in group settings. We would like to utilize students in the arts, music, education, nursing, social work and medical school to provide a full scope of services to our children while providing experience in the field for USF students.
Basic human functioning skills are compromised due to sensory deprivation from chemotherapy and radiation. The school would offer mental and physical stimuli in a non medical design. We feel that a healthy design will foster a healthy child. By interacting in this environment, designed to meet their needs, we believe there will be a positive influence in their mood and behavior.
Ideally, the students will interact with their environment, rather than conform to a traditional academic or medical setting. For example, bean bag chairs for children with bone pain as opposed to sitting in a traditional desk and chair, affects their behavior response. To have a setting where the design meets their needs and done in a fashion that doesn’t make them stand out is conducive to positive influences on their attitude and essentially academic performance. A wall with chalk board paint for graffiti and expressing feelings allows the students to actually react to their space and lead to psychological comfort.
Scope of care will include a day care area for preschoolers, an early education division, middle school and high school levels. The Academy will house a children’s cafeteria, coffee house for parents to gather, arts & craft area, music room, science lab, IT and computer center, rest area, play ground, a medical station and classroom areas for age appropriate academic study.
The U.S. Government guarantees an education plan designed specifically for each child, called an Individual Education Plan, IEP. The federal law, PL-94-142, was passed in 1975 and has been modified as the Disabilities in Education Act. In addition, Section 504 of the Rehabilitation Act of 1973, guarantees children with disabilities are eligible for special services and programs. Each child at the Academy would have an IEP on record and progress would be evaluated by the staff to ensure that all challenges are being confronted and all opportunities are being seized.
Baseline and transfer grades will be available for comparison to assess and evaluate the success of this positive non-stigmatizing program and the effect that their environment has on academic performance. In addition, the design, which promotes wellness and support, will allow all students to feel connected by being one of the children with cancer in the classroom instead of the only child in the classroom with cancer. The Academy will allow students to interact with their environment, instead of sitting out. Students respond to their space by the mental and physical stimuli provided by the design and a personality assessment can be determined by a positive change in behavior and mood. It is common, due to medications, disease state, alienation and teenage hormones to be depressed and moody. A change in attitude and mood can be observed as the student engages in a friendly, upbeat and positive surrounding.
The 1Voice Academy project is ongoing and co-enrolled students can start attending classes at the 1Voice Academy as soon as space is secured. Realizing the initial design may need modifications once enrollment time is initiated, the anticipated duration for this project is 3-6 months.
Support groups and psychosocial support is available immediately. Mary Ann Massolio, Executive Director, 1Voice Foundation and pediatric oncology social worker, has been facilitating family support groups in the Tampa Bay for over 20 years. She is currently providing family support programs at the temporary home of the 1Voice Foundation at the Palm Harbor Community Activity Center as well as the Shriner’s Hospital for Children.
Another part of the programming and research by the design team is the development of a set of guidelines for starting other academies throughout the country. There will be a list of needs and occupancy functions of the space to the specific local area needs. Once the first 1Voice Academy is established in Tampa, it would serve as an ideal business model to implement throughout the Nation’s healthcare system.
In addition to accommodating students/patients without making them feel accommodated, the Academy will allow parents to continue employment and guarantee their revenue. When your child is home sick, you are typically home with them and miss as much work as they do school. FMLA guarantees you a job at the end of your leave, but it is unpaid leave. With a sick child, financial devastation and an 80% divorce rate, the goal of the 1Voice Academy is to offer another alternative to drastically reduce these family stressors.
Afternoon academic and non academic programs will be offered. In addition, there will be evening and week-end support programs for the parents and siblings as well. This unique and innovative concept will truly change the dynamics that pediatric oncology families face.
All programs and services will be offered at no charge to the family and will be facilitated by a pediatric oncology social worker with nearly 25 years of experience. We truly believe that this innovative educational, recreational and psychosocial center of excellence will provide the necessary resources, normalcy and support that our very special patient population deserves.