Your child's school should be a place where both his academic and his health-related needs can be met. Federal statutes (such as Public Law 105-17 and Section 540 of the Rehabilitation Act) mandate that every child is entitled to an appropriate public education in the least restrictive environment possible. They require local school systems to develop and implement programs to evaluate and place children with special health-care needs or disabilities into appropriate programs, aimed at providing them with "full educational opportunities." Special classes or schools are acceptable only when the severity and nature of the handicap prevent youngsters from attending a regular class or school.
Many chronic illnesses, such as cancer, sickle-cell anemia, HIV, and severe lung or heart disease, or their treatment, may produce long-term cognitive and learning problems. These biological effects can interfere with a child's ability to be successful in school. Parents need to be aware of their potential problems, inform the school, and advocate to have a child-study team convened to evaluate the need for special education services. For children with chronic illnesses, the special-education category is "physical impairment or other health impairment." This classification allows children to have individual educational plans developed that address the specific needs associated with their illness. It is critical to address this issue because many of the cognitive impairments are subtle, and children's test performance on standardized assessments do not follow patterns typical of children with other types of learning problems. School personnel will need to be provided information about these issues in order to make appropriate plans for your child.
As a parent of a child with a chronic disease, familiarize yourself with these laws so you can be sure that your child is receiving all the routine and special services he is entitled to. If your child needs speech therapy, psychological counseling, or physical therapy, for instance, the school must make them available. He also may be eligible for home tutoring. You should monitor your child's educational experience to be sure that it is allowing him to make the most of his potential, providing appropriate programs without overprotecting or over-restricting him. School personnel should also be careful not to push your child too hard, making school more frustrating than fulfilling.
Your child's teacher and/or school nurse should be prepared to manage any health problems your youngster may encounter during the school day. It may be advisable for you or your child's doctor to speak with the school nurse and/or other school personnel to give them specific information about your youngster's disorder and what to do in the event of a problem during the school day. They should know how to respond to a seizure or an asthma attack, for example, and what activities may lead to a complication of an existing condition.