Chronic Kids

The new Disabilities Act and Special Education Needs Act strongly supports the right of children to attend mainstream classes/schools (Collier, 2003). Children with chronic illnesses such as asthma, diabetes and cancer are at the intersection of health and education systems, which traditionally operate in separate realms with different policies and philosophies. At school, their health needs may be attended to by a school nurse while their educational needs may be overlooked. The school nurse - if one exists - attends to health problems while classroom teachers focus on academics. Educators and school nurses often do not discuss the impact of children's health conditions on their ability to learn. When children are acutely ill, academic performance is not perceived as a priority (Thies, 1999). As a result, chronically ill students in our schools are challenged both by their illness and academically due in part to a lack of attention to their individual needs. Lynch, Lewis and Murphy (1992) determined: "Children with chronic illnesses experience more academic difficulty than their healthy peers. Forty-five percent (45%) of students with chronic illness report falling behind in their school work, leading them to dislike school" (p. 210).

Studies using the National Health Interview Survey, which has been used widely to estimate the prevalence of chronic conditions, suggest that 6.5% of American children have a chronic condition that affects their physical health. However, the survey lists only 25 diagnoses, and thus underestimates prevalence (Hoffman, Rice & Sung, 1996). Diagnosis alone does not capture the course of chronic illness, which can be uneven and unpredictable. It is not possible to assert that one diagnosis is more or less serious than another or that children with chronic illness should be treated as a homogeneous group (Sartain, Clarke & Heyman, 2000). For example asthma and hemophilia are chronic illnesses, but their day-to-day management and clinical courses vary. Asthma can be a seasonal nuisance, chronically disabling, or an acute life-threatening event. Diagnoses as definitions of chronic health conditions alone cannot predict the need for health or education services. Consequently, there is a challenge in the classroom for teachers to understand all the issues surrounding a child with a chronic illness (Thies, 1999).

The Crohn's and Colitis Foundation of Canada (2000) recommends that the appropriate school authorities should be informed as soon as a diagnosis of IBD is made and that the school nurse should be considered as a parent's best ally in ensuring other school staff understand the nature of the disease. Parents should talk to their child's teacher in order to make arrangements for washroom breaks, absences from school, homework, and school trips and to discuss flexible homework arrangements with the child's teacher during periods of hospitalization when the disease is active. The Foundation further suggests that teachers need to understand that a student may not be obviously ill. Teachers may become attuned to illness by the student's inability to concentrate. In the routine establishment of standards for all students, teachers should confirm that a student with IBD and their parents are aware that the student has the ability to complete work outside of the classroom, which may ease some of the undue stress of being absent due to the illness.

Good teachers make modifications to their lesson plans all the time for students: it is only when a qualified disabled child needs a systematic, consistently implemented battery of modifications in order to have his needs met as adequately as non-disabled children that a 504 plan becomes necessary (Richards, 1999). Children with chronic illness face two issues which are not well addressed by the IDEA law. First, children who do well in school are presumed not to need help. Jaff (2005) writes, "The IDEA defines "child with a disability" to mean a child with health problems "who, by reason thereof, needs special education and related services." A student who does not need special education because she is performing well academically is not a "child with a disability" under the IDEA" (p. 7-8). Because many children with IBD do not suffer academically, they may not be covered under the IDEA. Second, neither statute provides guidance for children with a chronic disease that remits and relapses. There will be times when a student needs home schooling and other times when the student has no need for help. This presents a challenge for both the parents and the school since the IEP or Section 504 plan is not intended to apply only some of the time, and flexibility is difficult to build into a plan. Disabilities can be temporary but still disabling. However, getting the school to respond quickly to ever-changing circumstances is a challenge. A plan under either the IDEA or Section 504 may include accommodations such as seating placement, extended time for testing, adjustment of class schedules, use of aids such as tape recorders, class and/or homework assistance, administration of medication, behavioral support, tutoring. Jaff (2005), from Advocacy for Patients with Chronic Illness, an organization which provides free advice and advocacy services from attorneys for patients, has resolved cases via 504 plans. In one, writing letters to the school was effective in immediately solving the situation for a young IBD patient who was told by her doctor that she had to eat several small meals per day, whereas the school would not allow her to eat in class, so she had to choose between missing food and missing class. The school capitulated by allowing her to eat in the classroom. They also made provisions for the other students in the class, so that she was not singled out.