As the new school year drew near this year, most parents crossed items off the supply list, stuffed book bags with pencils, folders and hand sanitizer, and planned lunches and afterschool activities. But those efforts were just the tip of the iceberg for parents whose children have complex medical needs. Those standard medical and emergency care forms that the schools send home with students that first week don’t cover all the medical scenarios and needs that our kids may have while at school.
My sons Drake and Benjamin suffer from hydrocephalus — a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF) that puts pressure on the brain. Treatment include a shunt that provides an alternative fluid pathway for CSF so that it bypasses various obstructions the brain; this bypass relieves the excess fluid buildup caused by hydrocephalus.
When things are going well, it’s easy for me to put my concerns about hydrocephalus and the complications that come with it out of my mind. However, it’s critical for me and those who are around my children when I am not to understand the signs and symptoms of some possible complications. Specifically, my kids are at risk of a shunt failure or the closure of an endoscopic third ventriculostomy (ETV) — a surgically created hole in the third ventricle of the brain that allows excess CSF to drain into another area of the brain to be absorbed. If either of my sons exhibits any symptoms of these complications, out of an abundance of caution I need to take him to his physician or the emergency room for an evaluation. Seeking immediate medical attention can identify a resolvable complication that, unaddressed, could result in brain damage or even death. Symptoms of shunt malfunction or ETV closure vary considerably from person to person, but recurring failures tend to have similar symptoms for a particular person.
With my sons’ complex medical histories, it is crucial that the school put together a document called an individualized health care plan — an IHP. The term IHP refers to all care plans developed by the school nurse, especially those for students who require complex health services daily or have an illness that could result in a health crisis. According to the Pennsylvania Department of Health, an IHP is written by nurses for nurses, and unlike the better-known IEP (individualized education program), does not require the signature of the parent or the school administration.
The management of school healthcare services for students with significant or chronic health problems is a vital role for school nurses. The standard for this role is based on the nursing process and must include: assessment, nursing diagnosis, outcome identification, planning, implementation, and evaluation. An IHP guides the management of healthcare conditions to promote learning; facilitates communication, coordination and continuity of care among service providers; and directs the evaluation and possible revision of the care provided. With an IHP, the primary care physician usually writes the health protocol for the school nurse to implement upon his or her discretion and direction.
Chronic mental and physical health conditions or disabilities can interfere with school participation and achievement; but many of these students do not require an IHP. Those with stable conditions, such as attention deficit-hyperactivity or mild intermittent asthma, are served by basic school nursing services such as healthcare monitoring or medication administration. Those students who need specialized services and require an IHP may also have an emergency care plan (ECP) and/or a field trip plan. The need for an IHP is based on required nursing care, not educational entitlement such as special education or Section 504 of the Rehabilitation Act of 1973. As the IHP is its own document, it is simply attached to the child’s IEP or 504 Plan, based upon which support plan he or she is using.
It is the responsibility of the certified school nurse to develop an IHP and ECP for students with healthcare needs that affect or have the potential to affect safe and optimal school attendance and academic performance. School nurses develop the IHP using the nursing process in collaboration with the student, family and healthcare providers. Ultimately, the school nurse utilizes the IHP to provide care coordination, facilitate management of the student’s health condition in the school setting, inform school-educational plans, and to promote academic success.
Without my sons’ IHPs with ECPs, I would not have the peace of mind to let them walk into school each day, away from my watchful eye.
Ashley Mantheiy of Dauphin County has two sons with hydrocephalus. She has shared their journey with Central Penn Parent readers for the past few years with the hope that others can learn from her experiences.