Educational Testing for Kids with Heart Defects

Learning problems are relatively common among kids with heart defects. In some cases, kids have well-defined and well-understood learning disabilities, such as a reading disability (dyslexia), or problems connected to attention-deficit hyperactivity disorder (ADHD).

In many cases, however, kids with heart defects have learning problems that are harder to diagnose and understand. Their challenges may be subtle or unusual, may emerge only when they are older, or may combine multiple interacting deficits that can range from mild to profound.

Educators often struggle to understand the nature of children's more complex learning challenges, and they may not know the best ways to remediate them.

Thorough evaluations can help caregivers, educators, and students understand how their mind is working, their unique strengths and weaknesses, and ways that they can learn effectively.

School districts must evaluate any student who is suspected of having a disability that influences their ability to learn. Families can request an initial evaluation if their child does not receive Special Education, and they can also request a reevaluation if their child already receives Special Education.

School districts are required to evaluate children in any domain of suspected disability. These domains could include:

• thinking and understanding

• memory

• attention

• problem solving

• reading, writing, and/or math

• handwriting

• using their hands

• moving their bodies

• eating

• behavior

• toileting

• self-care

• life skills

• vocational/job skills

Caregivers can ask the school to assess the child in any of these areas if they suspect the child has a disability in that area, and if the disability may prevent them from learning well at school.

The family must give consent in order for the school to evaluate the child. After the evaluation, the school must present the findings to the family in a written report and in a meeting.

Sometimes schools evaluate a child, but the family does not believe that they were able to adequately assess a child in a particular domain. For example, maybe the family does not think the school accurately measured the child's reading skills.

In these cases, the family can ask for the school to pay for an Independent Educational Evaluation (IEE) to re-evaluate these domains. The family and the school district need to work together to find an independent evaluator who can meet their needs.

Many hospitals and clinics offer neuropsychological or neurodevelopmental evaluations. Insurance will usually pay for most of these evaluations for a child with a CHD. Insurance usually will not pay for extensive educational testing.

Families seeking an evaluation through a hospital or clinic may need to pay out of pocket for an in-depth educational evaluation.

After a hospital or clinic evaluation, families can choose to share their report with the school district. Then, families should request a meeting with the school district to discuss the evaluation, and how it may affect the child's education program. When possible, it can be very helpful if the hospital evaluator can attend this meeting.

Psychologists and educators also offer private neuropsychological and educational evaluations. These evaluations vary greatly in terms of what they include, how long they take, how much they cost, and how involved the evaluator will be in supporting the family.

In seeking a private evaluation, families should ask for recommendations from doctors, teachers, and other experts in their area. In most cases, families will want to find an evaluator who:

• has experience working with kids with medical and developmental complexity

• has a high level of training (often a PhD, EdD or PsyD degree)

• is familiar with the school system

• has knowledge of Special Education law

• is able to diagnose specific learning disabilities, plus interpret cognitive testing

• is able to communicate with the school district if the parents would like

Some kids require only occasional evaluations, and other kids require much more frequent monitoring.

Kids who receive Special Education must be reevaluated by their school district at least every 3 years. Families can also request more frequent evaluations if they feel like new concerns have emerged, or the child's abilities have changed.

The American Heart Association (AHA) recommends that high-risk kids with complex heart defects should have a full evaluation when they are approximately 3, 5, 7-9, 11-12, and 14. A cardiac neurodevelopmental program or psychology office can perform these periodic evaluations. If a child has significant learning challenges, families may need to supplement these evaluations with more academic testing.

Kids should also be evaluated any time something happens that may significantly affect their learning profile. For example, kids should be reevaluated after a heart transplant, stroke, brain injury, time on ECMO, increase in seizure activity, or medication change that significantly affects their functioning. After an injury, illness, or surgery, children require months to heal before it makes sense to evaluate them.

Through regular evaluations, caregivers, students, and educators are able to make informed decisions about what and how a child is taught. Evaluations can indicate how a child learns, what strengths teachers can capitalize on, what weaknesses to reinforce, and how a student responds to instruction.

When combined with regular monitoring in the schools, evaluations can help ensure that school time is well-spent, and that teaching is adapted to each child's unique needs.

This content was reviewed by an educator at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.