Special Education for Patients with CHDs

Special Education programs are designed to meet each student’s needs, and can include:

• Placement: the classroom and school setting

• Services: teaching and therapies

• Accommodations: changes to how something is taught

• Modifications: changes to what is taught

According to IDEA and subsequent caselaw, students with disabilities have a right to:

1. a free and appropriate public education (FAPE)

2. that allows them to make meaningful progress appropriate to ability

3. in the least restrictive environment in which they can make such progress (LRE)

Students who qualify for Special Education have an individualized education plan (IEP) that is updated at least yearly, and that describes their annual goals, component benchmarks, services and service delivery, how goals will be measured, accommodations, and modifications.

Students with heart defects can qualify for Special Education if they:

• are between the ages of 3:0 and 21:11

• have at least one documented disability (as defined by IDEA disability categories, not ICD-10 or DSM-5)

• the disability prevents them from making appropriate progress in the curriculum

These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.

Families can initiate the Special Education process by writing or calling their school district and requesting a Special Education eligibility evaluation. Medical professionals can assist the process by providing documentation of the student's diagnosed disabilities and neurodevelopmental profile.

When providing documentation, the medical and developmental team should focus on disabilities or deficits that prevent the child from making progress in the curriculum. Having a heart defect is not sufficient to qualify for Special Education.

Using language that reflects the legal mandate of IDEA can increase the chance that a child will be found eligible. For example:

• indicate if a disability prevents the child from making "meaningful progress appropriate to their ability"

• describe services that the child "requires" in order to "meet their needs," rather than describing services that would be "beneficial" or that would be "best"

• refer to the disability categories of IDEA, and indicate which accurately describe the child, and why

If possible, medical and developmental care teams should participate in students' IEP meetings in order to promote understanding of their profile, and increase the probability that they will receive the educational program they require.

Medical and developmental professionals can help ensure that students with heart defects receive appropriate school services over time by continuing to monitor their program, and intervening if needed.

This can mean:

• request their yearly IEP, and include it in their medical chart

• at each appointment, ask the family:

  • are they meeting their IEP goals?

  • do they have unmet needs?

  • does the family have concerns about school?

• reach out to the school as needed, with family permission, to clarify the child's profile and advocate for their needs

Many students with heart defects qualify for Special Education from Kindergarten through 12th grade (ages 5-18). A smaller number of students with CHDs qualify for Special Education in preschool (ages 3-4) and early adulthood (ages 18-22).

When care teams are educated about the potential and the process of Special Education, they can guide patients with heart defects towards a powerful and free resource for intervention.

This content was reviewed by staff at Boston Children's Hospital's Cardiac Neurodevelopmental Program.

Special Education is often the best source of intervention for children and teens with congenital heart defects (CHDs). Medical providers should help families of kids with disabilities to gain access to appropriate Special Education plans.