Creating A CF Individualized Health Plan (IHP)

For the next step in our prep for Margo to start kindergarten, my husband and I met with the school nurse. We were both looking forward to this meeting as we had lots of logistical questions and the staff was eager to learn about Margo and how they can best provide care for her. We left the meeting feeling excited, prepared, and reassured.

Letter from clinic

To start the process, we asked our clinic social worker to provide a letter explaining Margo’s diagnosis and that she will require additional support because of it. It also specifies she will be out for doctor appointments and in the case of prolonged illness, she could be hospitalized. It said she will require additional snacks throughout the day and to be able to use the restroom whenever she needs to. It also explains her medication and treatment. I sent this letter to the school nurse and we scheduled a meeting.

Individualized Health Plan (IHP)

We met at the school with the school nurse, as well as the middle school nurse who oversees the district’s medical policies. Our guiding document was the Individualized Health Plan (IHP). The middle school nurse had several decades of experience as a school nurse and had previously had students in her care with CF. Her attention to detail was something I noticed immediately- she considered so many aspects of Margo’s CF needs and it was such a relief to see that level of understanding be reflected in the document.

What is in the IHP

Diagnosis overview: CF causes thick mucus that can clog the lungs, pancreas, and intestines. This may cause malnutrition, poor growth, frequent lung infections, breathing problems, and chronic pulmonary disease.

Margo will be absent from school as needed for medical appointments, hospitalizations, and treatment, which may include oral and IV medications, chest physical therapy, pancreatic enzymes, and high calorie diet with added salt. Margo has a higher susceptibility to lung infections and viruses, so it’s imperative to avoid exposure to germs and illness.

Goals of the IHP 

• Minimize symptoms and stress related to CF
• Optimize nutritional status and growth
• Minimize exposure to germs and illnesses to decrease the risk of infection

Interventions

• Provide necessary accommodations when Margo experiences exacerbation of symptoms (such as shortness of breath, coughing, abdominal pain, GI symptoms).
• Allow unlimited access to the bathroom, nurse and school counselor. Margo will rest in the nurse’s office as needed.
• For pulmonary symptoms or signs of illness, nurse will assess vital signs, listen to lungs with stethoscope and check oxygen level with pulse oximeter.
• Allow frequent snacks and water, with extra salt and fat in foods during the day. Margo can eat food prepared in the cafeteria and has no food restrictions. Ideally, she should drink whole milk and consume high fat foods. Snacks from home will be stored in the nurse’s office.
• Due to increased risk of upper respiratory infections, practice diligent hand-washing and avoid exposing Margo to illness.
• To minimize the risk of fomite transmission, use Sani-Cloth germicidal wipes to clean Margo’s desk just prior to her arrival in your classroom.
• Nurse will notify parents about increased incidence of illnesses in school. Parents may then opt to keep Margo at home.

There are other detailed instructions that we actually asked them to take out. One was about Margo being allowed to rest if she gets tired during physical play. This has never been an issue for Margo- she really is like any other kid. When she’s tired, she slows down and takes care of her needs (e.g. drinks water, rests, communicates that she’s needs a quick break). We didn’t want to risk any teacher being over-cautious and asking her to stop or slow down because of her CF.

Copies of the IHP were shared with every kindergarten teacher and the principal, with instructions to include it in their sub folders.

IHP versus 504 service agreement

I went into this meeting not knowing the difference between the IHP and a 504 service. I had it on my list to get one ASAP but the nurse took time to explain the difference. According to the Pennsylvania Department of Education, a 504 service agreement will be implemented if a child’s mental or physical disability (in this case, cystic fibrosis) substantially limits major life activities.¹

If Margo needs to be absent for several days, whether at home or at the hospital, a 504 service agreement legally requires that the school district must provide accommodations to make sure Margo’s academic needs are met, such as sending a teacher to give Margo her lessons. As a kindergartener who is thankfully in good health as far as CF is concerned, we aren’t concerned with that happening any time soon. We feel comfortable with the IHP at this point and will eventually meet with the elementary school guidance counselor to create a 504 plan.

In my next article about the kindergarten process, I’ll go into more detail of how Margo’s medication is handled throughout the day. Stay tuned!