CHD kids and School Special Services

Several people in our CHD support group have recently had questions about getting special services for the kids who are starting school this year. Specifically, we have been discussing the differences between Special Education services through the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 (Section 504), and which would be appropriate for their CHD child. As a school principal, I deal with both Section 504 and IDEA students on a daily basis. I hope that the following blog will help you make the right decisions to provide assistance and protection to your CHD child as they start the new school year.

Basically, the two laws are similar in that they both provide educational benefits to kids with disabilities, but they differ in their eligibility requirements and the types of benefits that are provided. The requirements for eligibility under IDEA are stricter than those under Section 504, but IDEA provides more benefits than does Section 504. Essentially, all students under IDEA are also protected under Section 504, but not all students under Section 504 are protected by IDEA. It is easier to place a student under Section 504 because it has less procedural criteria, but these students are generally provided less assistance and monitoring by the school. IDEA status is more difficult to get because there are more specific criteria and it has much stricter regulation, but it does provide more types and degrees of assistance and special services to the student.

Section 504 protects people for their lifespan in many areas, including school, employment, and transportation, while IDEA only addresses the special education of students from ages 3 to 21.

Students are eligible for IDEA if they have a specific impairment or condition that adversely affects their educational performance. These impairments or conditions can include, but are not limited to: autism, learning disabilities, speech/hearing impairments, emotional disturbance, or other health impairments, but the condition MUST adversely affect their education. Students are eligible for Section 504 if they have a condition that substantially limits a major life activity, even if the condition does not affect their education. Major life activities include: walking, seeing, speaking, breathing, learning, and working. But Section 504 conditions do NOT have to have an educational affect.

IDEA requires that students be placed in the most appropriate learning environment for them individually. This can include regular or special education classes. It also requires that each student has an individualized education program (IEP), which provides specific modifications and accommodations to help the student succeed academically. Section 504 generally places students in a setting that is comparable to that of students who are not disabled. It also provides some accommodations, but these are usually used in the regular educational setting.

So, which type of services is right for your child? This depends on the level that your child’s CHD has affected them and their development. If your child’s CHD caused them to have any type of developmental or learning disability, then IDEA is probably the right program. If your child’s CHD slows them down physically, but has not affected their learning or development, then Section 504 is probably best. There are obviously exceptions to these, so be sure to consult your child’s school if you aren’t sure which is right for you.

You might be wondering why you need any type of service at all if your child doesn’t have any learning or developmental issues. As a principal and a CHD parent, I highly recommend that you pursue some sort of protection for your child at school. While your child may not need accommodations or special services in order to succeed academically, they may need some of the other protections that are provided under Section 504.

One of these protections involves attendance. Many states require that students attend 90% of the available school days and, even if an absence is for approved medical reasons, a student can be retained for excessive absences. If a student has protection under Section 504, special accommodations can be made in the event of an extended illness or hospitalization. Also, your child may not experience severe educational deficits early in their school years, but if they do later in life, having a 504 plan can make it easier to get accommodations or even move to IDEA protection. Section 504 also makes it easier to get certain exemptions from activities, like running, lifting weights, etc.

In addition to all of this, the Section 504 plan follows your child through school as a record and every new teacher is required to review it during the school year. This means that each new teacher will be notified of your child’s condition and know what your child needs.

I hope that this information helps you in making the right educational decisions for your CHD child. If you still have questions, feel free to email me at I also encourage you to speak to your school’s counselor or special education diagnostician. Again, your CHD child does not have to have either one of these services, but I assure you that my son (HLHS) will, at least, have a Section 504 plan.

Trent Hamilton
Director of Local Support (middle school principal)
Whole Hearts Foundation

Back to school with CHD kids

One of our topics this week was getting CHD kids ready or back to school.  With such wonderful responses and messages we though it would make a great stand alone entry for our blog for everyone’s benefit.  Here are some of the fantastic advise we received from some of our Whole Hearts family.

Whole Hearts mom Jennifer Howard gave us this great insight:

“Because it is time for back to school, many parents are asking questions as their kids go off to school and I keep replying with my praise of MedicAlert, I thought I would give a quick rundown of the reasons I like it.

All of my son’s info is in one place. His pertinent information is printed on the bracelet he wears, including his ID# that Emergency Medical Response (in case of an emergency) can use to look up ALL of his medical info I have entered into MedicAlert. It is easy to update his information online and if I ever run into trouble entering something, their customer service is GREAT! An example of this is his aortic valve replacement. It is actually a pulmonary valve (he was only the 5th child to receive this type of valve in the aortic position), so entering the part # pulls up “pulmonary valve” on the site. I contacted customer service and they held a special medical review and made the change so the information on his record was correct.

Below are the tabs that are on Landon’s MedicAlert Health Record. You can update it online and can PRINT the entire record to give to teachers or other care providers.

Personal Information
Emergency Contacts
Medical Providers
Any necessary documents
Devices (including part #s and serial #s)
General Info (religion, language, insurance info and blood type)”


Another one of our Whole Heart moms Lindsey Morrison sent us a great message we wanted to share on the topic of going back to school.  Lindsey says:

” Here is a letter that I have found very useful when it has come to my two CHD children. The teachers and staff have expressed how thankful they are to have gotten the letter and how much it helps. Would you please share it with the other WH familes. They can save it to their computers and insert their child’s name and other information.




Dear teachers name, and concerned staff,

I wanted to first say hello. (Child Name) is excited to be in (Grade in school) and hopefully will be a perfect addition to your class. I wanted to let you know a little about (Childs name). I will send this to the school nurse, Gym teacher, Principal and any other relevant staff as well, so I apologize if it was passed on but as you will see it is rather important that everyone dealing with (Childs name) is aware of his/her special circumstances.

(Child Name) was born with a Congenital Heart Defect (CHD) called a (your Childs CHD and brief medical history, any sergeries, hospitalizations or other info )

We have been enjoying the time since the last surgery and do not expect any procedures in the near future, but with a condition this serious the future is never crystal clear. He/She will see her cardiologist in (next appt date) and if anything is turned up, we will of course let you know if it will affect her school time.

Just to let you know some tidbits about Him/her and some warning signs and things to watch for. (Childs Name) oxygen levels are sometimes slightly lower than that of other kids. The weather can affect heat/cold regulation so there needs to be the ability to rest when she needs to and hydrate as much as possible during physical activity, this is very important. I will make sure she is appropriately dressed for the weather.

Physically he/she is to be treated as normal as possible. He/She is not allowed hard contact sports or any kicking, hitting, direct ball contact etc in the chest. Running is fine and most physical activity is ok as long as she can rest if she needs it or get a drink of water. Things to watch for: Nostrils flaring/rapid irregular breathing, bloodshot eyes or rolling of the eyes, extreme sweating, redness of the face and body that doesn’t go away with shade/rest, blueness of the lips or hands or vomiting. Any signs of an adult heart attack, the dizziness, fainting, pain in the arms, etc. also would of course be signs of emergency.

As I mentioned, I will have spoken with all the staff that deal with (Childs Name), and obviously if she is in distress of any kind, 911 should be called before me, but if he’s/she’s just “normal” sick, I can be called.

Please forgive me if this comes across as a lot of information. We wanted to provide it so everyone is on the same page in regards to (childs name) care. There really should be minimal impact the heart defect has on day to day life at school, but we felt very strongly that everyone who is in a caretaking role be made aware of this issue.

We are all looking forward to a fun school year. Thank you so much for taking the time to read this, and if there are any questions you have, I would be more than happy to answer them for you. Thank you again.


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