The complexities and challenges of a chronic illness like Fanconi anemia (FA) tend to focus the attention of parents on the physical effects the disease has on their child. Monitoring of blood counts, bone marrow biopsies, initiating a stem cell donor search, and deciding on a transplant center are only a few of the many physical needs requiring attention. Of great importance that may take a back seat are the educational needs and accommodations of those living with FA. At the 2018 Family Meeting, Valerie Theile, MEd, School Liaison Specialist at Cincinnati Children’s Hospital, highlighted some of the challenges faced by children and adolescents with FA and interventions available to help them succeed in school.
The educational implications of a chronic disease are seen in three areas: 1) physical/medical; 2) social/emotional; and 3) cognitive. Potential or actual challenges in each area must be identified and met with appropriate interventions. Communication with teachers and all those involved in a child’s school life is of highest priority for maximizing educational, social and behavioral potential. Making staff aware of the precise needs of the child is crucial.
Considering the child’s own perceived needs is equally important. While parents and caregivers tend to focus on the medical/physical needs, children and adolescents focus on the social and emotional aspects of their school experience. The physical demands of a chronic disease can easily result in isolation, which leads to a negative affect on social skills and possible behavioral problems. Keeping kids connected to peers and teachers can help minimize negative effects of isolation. This is a challenge when a child is limited to home instruction.
Once the needs of the child are identified, three educational plans are available to accommodate public school students: 1) Individual Education Plan (IEP); 2) 504 Plan; 3) Individual Health Plan (IHP). Each plan addresses different needs. Plans can be used together, but this is not common, as all accommodations found in a 504 plan can be included in an IEP, and the IEP can provide services not available in a 504 plan.
Education plans for private school students are different, in that the school has varying degrees of responsibility in meeting the needs of the student. For instance, home instruction/tutoring for the private school student might come at a cost, whereas the same accommodation for a public-school student is free.
In addition to public and private, other school systems exist (charter, online, homeschooling), and programs are available depending on the system. Information on student rights, school responsibility and resources can be found online by state. Additional help is available through physicians and clinical institutions. Most large medical institutions have education/school intervention programs, such as the one Theile represents at Cincinnati Children’s.
Early identification of the needs of the child, adolescent, or even young adult student, combined with ongoing, effective communication between all parties involved, gives the most promise for success in school. Theile recommends starting the education plan as early as possible, even as early as preschool, so that the transition to elementary school is smoother, with needs identified and accommodations provided. In addition to the accommodations and services provided by the different education plans, other support is available. Many resources exist on the local and state level. Two such resources provided by Theile are www.parentcenterhub.com and www.understood.org. With a comprehensive and well-coordinated plan, schools, parents, healthcare providers and even the community can help provide a supportive educational environment for those with FA to succeed in school and optimize their academic, behavioral and psychosocial development.