GENETIC ALLIANCE BY MONICA KORTSHA AND SHARON ROMELCZYK, MPA
Discussing an individualized healthcare plan (IHP) with your child’s school nurse is one way you can prepare for the coming school year and make sure their special needs are addressed accordingly.
With the end of the school year and summer approaching fast, it’s hard to think about anything else besides recitals, report cards, and vacations. But we all know the feeling of anticipation that comes with a new school year; uncertainty and anxiety around new environments, teachers, and other things to consider for your child with special healthcare needs. And whether your child will be enrolled in a traditional classroom, inclusive classroom or special education, it’s important to ensure that your child’s educational environment will be the best fit for their unique needs (having such an environment guaranteed by federal law, too).
Discussing an individualized healthcare plan (IHP) with your child’s school nurse is one way you can prepare for the coming school year and make sure their special needs are addressed accordingly. An IHP clearly identifies a child’s current healthcare needs and how to best manage them during school and during school related activities, such as after school events, and on the school bus. The plan sets clear care expectations, assigns care responsibilities and establishes a line of communication between the child, parents, school nurses and outside healthcare providers.
“[When making an IHP] we have to develop trust, we have to work together and seek solutions together…we work through this process to find the kinds of things we need and how we can reach them so the child can be safe and healthy at school and school activities,” says Charlotte Burt, a former school nurse and nurse consultant for Heartland Regional Genetics and Newborn Screening Collaborative’s IHP Project. The project is working to improve IHP knowledge by gathering information from stakeholders from across the Midwest to inform web and print resources.
A child with any known health condition that requires the care or attention of others should have an IHP in place, says Burt. Having an IHP helps ensure that your child’s health needs, whether constant or occasional, can be properly addressed at school if and when they come up.
Creating an IHP is, by its very nature, a very individualized process. But Burt says that there are some steps that should be common across plans.
The first is for parents to work early on with their child’s healthcare providers and school nurse to clearly define and articulate their child’s health needs. That could mean, even before your child starts schooling or at a new school, having conversations to be prepared. In addition, Burt also recommends parents utilize a health advocate, a person who has made an IHP before, or works with parents with special needs children, to help guide them through the
A plan should cover a child’s everyday health needs: medication, dietary and feeding information, signs and symptoms of an oncoming episode, and allergens, among other notables.
Brenda Hummel, whose seven-year-old daughter, Andrea, is non-verbal and requires help with all physical tasks, recommends that parents create a “day in the life” of their child.
“From the time you get up to the time you go to bed, what do you do? What medications are given? What are you looking for? What do you do when something isn’t right? How do you know when something isn’t right?,” said Hummel. “Everything you can think of that can give another individual the best insight into your son or daughter so they can be the best caregiver or advocate while at school.”
But it’s important to discuss health outside of the everyday, too, says Burt. Plan ahead for how your child’s care will be managed during field trips, school events, during emergency situations, such as a fire evacuation or snow day delays, and other novel situations.
Once a child’s health needs are clearly defined in an IHP (a task that needs to be revisited whenever a child’s condition changes) the next part of the process is working with in-school caregivers, including school nurses and potentially teachers and specialty caregivers, to define caregiving roles and responsibilities. Two complicating factors at this step, says Burt, are how well a school is equipped to provide specialty healthcare to special needs students,
and differences in state laws mandating who can provide care under different situations.
If a school has a well-staffed nursing team, the school may be able to provide all care. However, for schools that are not as well-equipped, or for students who require constant care, teachers or outside caregivers can help. In some cases, nurses can delegate traditionally nurse-performed tasks to trained teachers or caregivers, such as gastrostomy tube feeding. But other states expressly prohibit nurses from delegating healthcare tasks to others.
Having a clear understanding of the laws concerning healthcare in the school environment can help you know all the potential care options for your child while at school, says Burt. Your state’s department of education or department of public health should be able to tell you what healthcare regulations are in place. In addition, the departments may be able to tell you about certain grants, waivers or programs, such as Medicaid, that can help with the cost of caring for your child in and outside of school.
But even the best IHP won’t be able to cover every situation. Therefore, part of the IHP process is setting up clear channels of communication between parents, children, school nurses, and outside caregivers. What this looks like depends on what all involved parties are comfortable with, says Burt, and can mean everything between sharing medical records, to having up-to-date phone numbers.
“Teamwork! Work together to give the child the best learning environment possible while also providing the safest health environment possible,” Hummel said.
If problems arise when creating or carrying out the IHP, direct communication should be the first step, says Burt. Keeping issues as localized as possible usually helps problems get resolved quicker – however, if local streams of communication are not working, there are federal laws concerning disabilities rights and protections that may help get your child that care he or she needs.
Once an IHP is agreed upon, put a final copy of it in writing and distribute to all involved parties. It serves as a record and a resource that can be referenced and amended in the future. It helps make sure everyone is quite literally on the same page, and can help serve as proof for the school that it is complying with disability laws. And although the main reason for the IHP is caring for your child, having healthcare plans in order can help set all involved parties more at ease. After all, school is exciting enough without worrying about healthcare.•
ABOUT THE AUTHORS:
Monica Kortsha is a science writer and a past Genes in Life intern at Genetic Alliance. She covers the intersection of science, culture and society. Learn more about Monica and her writing at monicakortsha.com
Sharon Romelczyk serves as Program Manager, managing public education and outreach efforts for Genetic Alliance.