Children with a Chronic Ilness: School Attendance Issues

The new school year is in full swing, and I hope everyone had a positive start to the year. 

In this post, I am going to address school attendance. All states have “compulsory attendance” laws on the books, stating that a child who fails to attend school for a specific number of days is considered truant, unless the absences fall under a specified list of excused absences, which includes absence due to illness. However, when the number of “excused absences” becomes too much, some schools threaten to bring truancy charges against the parents or threaten loss of credit or advancement to the next grade. 

Children with a chronic illness often experience frequent or extended absences as well as frequent medical visits. It is currently estimated that 18% of all school-aged children live with some type of chronic illness. Of those children, 58% routinely miss school and 10% miss more than 25% of the school year.  As noted in one of my previous posts, however, children with disabilities, including those with a chronic illness, are protected by a number of federal laws. Schools cannot legally penalize a child with a documented disability (or that child’s parents) when that child misses school due to the disability.  Schools are required to accommodate a child with a disability and, in the case of a chronic illness, the health needs of that child. This includes accommodating frequent absences.

I have heard from quite a few parents that schools are giving them a hard time when their child with a chronic illness, such as dystonia, has frequent absences due to that illness. In addition to threatening to not promote a student to the next grade, I have heard that some schools have required a child with dystonia to stay at home and receive instruction from a visiting teacher once or twice a week (homebound instruction). I have even heard about one family where the school suggested they pull the child out of the school system and homeschool him! Parents can, and should, insist that their schools do better at meeting the needs of children with a chronic illness. 

There are steps you can take to help ensure that your child has the opportunity to reach his or her full potential and be educated in the least “restrictive environment,” such as in a classroom with nondisabled peers. The best way to accomplish this is to make sure your child has a “health plan” as part of a “504 Plan” or as part of an IEP.  That plan should include the fact that the child may have frequent absences due to the illness, and state an appropriate protocol for accommodating those absences.  The school should work with you to create strategies for allowing your child to be in the classroom as much as possible, with specific additional support for your child if they are unable to attend school due to illness.

Examples of such strategies or accommodations may include, but are not limited to:

• Reducing the child’s workload to core concepts
• Utilizing technology to allow the teacher to directly communicate with the student if the student is absent for more than one day
• Allowing for creative recess activities
• Counting Physical Therapy as a Physical Education credit
• Providing additional instruction after an absence to enable the student to make up necessary work
• Having a plan for easy re-entry to classroom after an absence
• Building-up to a full day schedule

The key is having a plan of action in place, and not waiting until after your child experiences frequent or prolonged absences. 

Creating this plan requires communication and team work between the school administration, teachers and parents. Even your child’s medical team can play an important role.  You, the parent, may need to educate the school about your child’s illness. School personnel are not likely to be experts about dystonia. In fact, it is likely that your child will be the first child with dystonia they have worked with.  That is OK. Your goal is to get the most comprehensive and best education possible for your child as well as to help him or her successfully and confidently adjust to living with a chronic illness. The school’s goal is to provide your child access to the educational process so as to enable him or her to reach educational milestones along with his or her peers. Only by working together can parents and schools ensure that these goals will be realized.The first step is, of course, having an IEP or “504 Plan” in place. These documents, created in accordance with federal law, are your child’s best protection. As noted previously, a school’s act of providing benevolent “accommodations” without one of these documents is not enough.  Adding a “health plan” to these documents will serve to address your child’s specific special health needs, including a plan for when your child is absent.

It is possible that there may be a period during your child’s education when both you and the school agree that your child’s health requires that your child stay home and receive homebound instruction.  This placement is the most restrictive educational placement and should only be considered if necessary for the wellbeing of your child. However, there are many ways to make sure homebound instruction is an educationally productive and positive time for your child.

Please remember: parents are natural advocates for their children. It is important to know the law, stay informed and work collaboratively with the schools. Until next time...