Special Education Services for Children with Pulmonary Hypertension

504 Plans and Individual Education Plans (IEPs) 

A 504 plan, which falls under the Americans with Disabilities Act, spells out the accommodations needed for a child with a disability to participate in school activities. Children diagnosed with PH are eligible for a 504 plan because they have a chronic illness. An IEP, which falls under the Individuals with Disabilities Education Act (IDEA 2004), is concerned with providing educational services to students who have a learning impairment and require specialized instruction. Only a small subset of children who qualify for a 504 Plan will qualify for an IEP. Since PH medications may have an effect on a child’s cognitive functioning, making a child eligible for an IEP instead of a 504 plan, parents should discuss which option is appropriate for their child with school administration. 

504 Plan

classroomThe “504” in “504 plan” refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act; it specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. Private schools and homebound instructors that receive federal funding are also subject to this policy. The kind of accommodations and modifications offered by a 504 plan are often the sorts of things parents may have worked out privately with the school or the teacher in the past. For example, parents can request an extra set of textbooks for use at home during unforeseen sick days. Having a legally binding plan lets everyone know what’s to be done and how to go about it, and it promotes consistency and accountability. Putting your child’s accommodations in writing as soon as possible may also ensure a smooth transition between schools and promote support from school administrators in case your child’s needs change.

Below is an example of how one family with a teenager worked with school staff to come up with accommodations they thought were appropriate for their daughter. Accommodations related to field trips and substitute teacher notification might be helpful for younger children with PH as well. Keep in mind that a 504 plan can be modified at any time during the school year.

Sample 504 plan for a high school student

Classroom accommodations:

  1. Assignments may need to be shortened or excused due to absences. Extra time may be necessary to prepare for tests and complete assignments. Student or her parents will request these accommodations as needed. In addition, the student may have additional time on in-class and standardized tests when requested.
  2. Student may need to access the restroom several times during class, due to medications. Please accommodate her requests.
  3. Student may need to leave class early or may arrive to class late.
  4. Student is capable of determining what she needs and will communicate those to her teachers. All requests related to her illness or side effects are reasonable and should be granted.
  5. In situations where student is not feeling well, teachers need to check to make sure she is all right.
  6. Substitute teacher lesson plans will include information about student’s condition and needs.
  7. The Attendance Secretary will notify her teachers' substitutes of student's condition OR contact the nurse, administration or counselor to alert the substitute.
  8. At the beginning of each year, all teachers, office staff and support staff will be informed of student's condition and needs.
  9. Prior to each semester, a meeting will be held to review student's schedule in order to pre-enroll her in classes.
  10. Student will have two sets of books, one for school and one for home.
  11. Student is excused from all Physical Education graduation requirements.
  12. Coverage on field trips will be arranged between parents and teachers.

Other school arrangements might include:

  • assigning a locker in a central location
  • having a classmate in each class identified ahead of time as a designated helper in case an escort to the office or check-in in the restroom is needed
  • having access to the teacher’s email address to help efficiently communicate modification needs for assignments/tests and to inform teachers of upcoming planned absences

An Individualized Education Plan in a Nutshell

An IEP outlines learning goals for a student with specialized needs. Only certain classifications of disability are eligible for an IEP. Those classifications include: learning disability, attention deficit hyperactivity disorder (ADHD), emotional disorders, mental retardation, autism, hearing impairment, visual impairment, speech or language impairment and developmental delay. A school must help a child master the goals outlined in his or her IEP in the least restrictive learning environment possible. In certain situations, a specialized class is necessary to facilitate optimal learning. If your child is eligible for an IEP, you may include accommodations that he or she needs for pulmonary hypertension in the fourth page of the IEP. In this case, a separate 504 plan is not necessary.

Adapted from Pathlight, winter 2009 and winter 2010 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.