Should Children With Heart Conditions Have 504 Plans at School?
I have not yet met a parent who was okay with hearing that her child had a behavior issue or learning challenge in school, even if she suspected it. After being diagnosed with a heart condition, this news can feel like another hurdle on the path to “normal”—whatever that may look like.
But behavior and learning issues are extremely common for kids who have been treated for serious heart conditions. Whether the cause is biological or environmental, you’ll want a solid plan to ensure your child’s success in school.
That’s where a 504 Plan can help.
The 504 Plan
A “504 Plan” is a common nickname among parents and teachers for Section 504 of the Rehabilitation Act of 1973. Under this law, public schools that receive federal funding have to offer support services to students ages 3 to 22 with disabilities or impairments.
Kids who have medical issues that lead to challenges with concentrating, reading, speaking, listening, walking or writing may qualify for a 504 Plan.
Under the Individuals with Disabilities Education Act, your child must have 1 of the 13 impairments listed, and that impairment must limit his ability to keep up in school.
The goal of a 504 Plan is to make sure that students who have learning limitations because of medical conditions still have the same academic experience as everyone else.
Assessing Your Child’s School Needs
If you suspect your child may be struggling to keep up in school, don’t worry. You’re not alone. Many of the kids I see in our heart clinic experience issues at school, even if they were treated for their heart conditions as newborns.
Our heart kiddos can visit the Children’s Cardiac Neurodevelopmental Clinic for an evaluation. There, the team evaluates how they perform against benchmarks for their age in areas, such as motor skills and intelligence.
These tests typically take a few hours, depending on the patient’s age and level of function.
Their results help us identify those kids who need extra help. Then, we coordinate with parents and the school to make sure the kids get that help through our clinic or while they’re in class.
Keep in mind, though, that just because a kiddo does well or poorly on an evaluation once, doesn’t mean their results won’t change in a year or more.
I’ve seen babies undergo heart transplants and test normally in evaluation, but a few years later, once they start school, teachers report issues connected to their heart condition.
Making the 504 Plan Work
Your child’s school nurse, teachers and school counselors can also assess what your child needs and help you revise those needs over time.
Ideally, your medical team and the folks at your child’s school will come together to nail down the 504 Plan at the beginning of the school year. But as I tell all parents: The hard work can’t end at school. Make sure to supplement your child’s plan at home. Kids need consistency, routine and positive reinforcement to keep them in check and motivated.
Not only that, but as your heart kiddo adjusts to new routines and extra help at school, be sure to treat her just the same as your other children. Be consistent with discipline and rewards. This will help her understand that you and her teachers have the same expectations for what’s appropriate and what’s not.
Part of our job is to listen to our kiddos’ support circle and make adjustments based on what they’re saying. Some may need to go back to the developmental clinic. Others may not need help at all anymore. Regardless, there are many, many support services and resources out there. Your heart team can help you find and utilize them—and develop the right plan for you.
Whatever medical documentation your child’s school needs, your heart team should be able to supply. And then parents can work with teachers and social workers to develop a plan that’s right for their child.
For more information, check out the Children’s Cardiomyopathy Foundation’s list of resources on working with your child’s school to create the right learning environment.