Should Children With Heart Conditions Have 504 Plans at School?

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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.

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

9 Responses to "Should Children With Heart Conditions Have 504 Plans at School?"

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  1. Colleen

    July 28, 2014 at 2:24 pm

    We didn’t know our daughter, born with HLHS in 1993, and who later developed protein-losing enteropathy, 1996, qualified for a 504 plan until she entered 6th grade when her health issues necessitated the need to explore getting one for her. In hindsight, I wish we had one in place at the beginning of her school experience. Without going into the details do her challenges, I would highly recommend parents to set one up as shared in this article.

    • Barb Roessner

      July 30, 2014 at 11:30 am

      Sorry to hear this took so long, Colleen. Thanks for your encouragement—and for reading.

  2. Gil Wernovsky, MD

    July 29, 2014 at 4:51 pm

    Very well done!!

  3. Barb

    August 11, 2014 at 6:58 am

    Here’s an excellent comment from a member of the Facebook community that could be helpful for parents:
    “My daughter is in kindergarten this year. She had a heat transplant two years ago and she is currently fighting her second leukemia. Her 504 plan contains the following (just listing the most important): 1. AED on campus with office staff certified 2. 100% immunized class 3. No playing outside on windy days 3. Notification of all cases of whopping cough, strep throat , cold sores (ie., infectious diseases), 4. No playing in sand 5. Unlimited hydration/snacks/bathroom breaks 6. Hand hygiene with help 7. In case of emergency instruct EMS to call for life flight , not ambulance and to be transported to UMC hospital only. Those were the biggies, her principal and teacher are fabulous with her receiving amazing care.”

  4. Barb

    August 11, 2014 at 7:00 am

    Another excellent suggestion from our Facebook community:

    “Another option can be if your district acknowledges the “Other Health Impaired” designation under Special Education. I know a lot of times the term special education can make you think it is only for children with learning problems. But, OHI kids can be eligible for all of the services provided under that umbrella. Sometimes you need to check out the advantages of both programs and determine which is the best for your child.”

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