mother and child holding each otherThe Heartland Advisory Board and Advocates Work Group have endorsed the following vision and mission statement for the IHP project.

Vision Statement: All schoolchildren and youth with genetic conditions and special healthcare needs within the Heartland region achieve optimal health and education outcomes as participating members of their communities.

Mission Statement: The mission of the Heartland Individualized Healthcare Plan initiative is to significantly improve the health outcomes of children and youth with genetic conditions and special healthcare needs, in school and school activities, by partnering with all stakeholders involved in the child’s individualized healthcare plan (IHP) through advocacy, communication, education and collaboration.

Heather Smith and Melanie Baxter present an overview of Individualized Healthcare Plans (IHP), share a project from the state of Kansas and plans for expansion within the eight states of the Heartland Collaborative. If you are interested in participating in Heartland’s IHP project, please contact the HRCC.


Project Background

The Individualized Health Plan (IHP) is “a plan developed by the professional school nurse in collaboration with lawful custodians and others which outline specific healthcare to be given to an individual student” (from the Kansas Guidelines for Educators, School Nurses and Parents). Chronic health conditions (mental and physical) can interfere with learning and may require nursing or health services at school. Most recent data indicate that 15.5% of all children and youth with special healthcare needs (CYSHCN) age 5-17 years old miss more than 11 days due to illness (

At the present time the IHP is not mandated by law; however, the National School Nurse Association recommends an IHP be developed for any student that requires medical attention during the school day. The IHP is often developed when a child has a Section 504 Plan and/or an Individualized Education Plan (IEP). It is recommended that the IHP is embedded within either of these plans, if applicable. Anticipated benefits of an IHP include better school attendance, improved alertness, increased physical stamina, fewer medical symptoms, increased ability to participate in school activities and fewer medical emergencies. Students, families, and school staff can all benefit from the IHP.

Previous work in Kansas found vast discrepancies across schools regarding IHP processes and protocols. The school nurse was often the sole person responsible for developing the plan and families were generally not involved in the process. The Kansas Integrated Community Systems (HRSA D-70) grant team worked to develop an IHP template with input of families, nurses, and medical providers to assist school nurses in developing IHPs for students with health needs. Examples include children who take medications during the school day, require health monitoring, are at risk for medical crisis and require a crisis care plan, use special medical equipment while at school, or require frequent healthcare procedures.

The Heartland Advocate Work Group identified the IHP as an area of particular interest, and began discussing how Heartland could address this need for families and students with special healthcare needs (SHCN) and/or genetic conditions. After much discussion and research, Heartland decided to partner with Heather Smith and Dr. Wendy Parent-Johnson from the Kansas D-70 project to address the:

  • Lack of awareness of IHPs among families, nurses, and providers;
  • Ineffective procedures or little to no dedicated process for the development and implementation of an IHP; and
  • Poor implementation or utilization rates for children and youth with SHCN and/or genetic conditions.

This project intends to build upon the work completed in Kansas by identifying and engaging key stakeholders and partners to participate in this learning collaborative. Teams of key stakeholders have been developed from each of the eight states in the Heartland Region, consisting of school nurses, family advocates, state school health consultants, special education professionals, primary care and genetics providers, and others devoted to ensuring the development of IHP procedures, processes, protocols, and policies for their state.

About the Learning Collaborative

The mission of the IHP Learning Collaborative (LC) is to demonstrate that effective policies and procedures can improve IHP development and implementation, and support school nurses in providing quality care to children and youth with SHCN and/or genetic conditions.

The LC will be an ongoing learning process, bringing together teams from each of the Heartland states. Beginning in April 2013, with an expected project end of early 2014, teams will work to improve the process of IHP development and inform Heartland of next steps in the IHP initiative. Teams will consist of key stakeholders from each state with a desire to improve IHP process for their local community.

By bringing together key individuals, we hope to learn from the collective experiences and challenges of each state team as we aim to make the IHP a tool to enhance coordinated, continuous, and family-centered care for children with SHCN and/or genetic conditions.

Goals of the IHP Learning Collaborative

The primary goals of the LC include:

  • Test and improve upon the IHP “standard” template developed through the Kansas D-70 grant
  • Write a practice guideline for how to identify all students in need of an IHP
  • Devise explicit plans/policies for IHP development that work for their state
  • Implement IHP development policy at the local level in a school or school district

There will be three in-person meetings throughout the duration of the LC. During these meetings, teams will learn from each other’s experience, brainstorm next steps, identify local needs related to the project, and inform Heartland of future recommendations for this initiative. In the end, each state will have moved towards a successful system of being able to develop and implement IHPs while effectively communicating with families, students, and providers, and the Heartland Collaborative will be poised to expand what we have learned to the broader region.


Comparing School-Based Plans for CYSHCN and/or Genetic Conditions

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Genetics education materials for school success (GEMSS)

GEMSS is a new website for parents, educators, nurses, therapists, counselors, and others featuring information that schools can use to support students with genetic conditions. The site houses a library of useful tools and tips for educational supports, dietary needs, field trips, sports, and much more. GEMSS was developed by the Education & Outreach work group within the

New England Genetics Collaborative

The NEGC is funded by grant no. H46MC24093 with the Health Resources and Services Administration/Maternal and Child Health Bureau/Genetic Services Branch.

Key Project Definitions

Children and Youth with Special Health Care Needs (SHCN): Children and youth who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. (MCHB, 1998)

Individualized Education Program (IEP): An annual written statement for each student with a disability which describes the unique educational needs of the student and the manner in which these needs are to be met.

Individualized Family Service Plan (IFSP): The written documentation of the interventions necessary to meet the unique needs of a student with a disability and the family, developed by a multidisciplinary team, including the lawful custodian.

Individualized Health Plan (IHP): A plan developed by the professional school nurse in collaboration with lawful custodians and others which outlines specific healthcare to be given to an individual student. This plan may or may not be a part of the IEP/IFSP or Section 504 accommodation plan.

Learning Collaborative: An initiative in which teams of peers come together to study and apply quality improvement methodology (in this LC, we will be using the Model for Improvement methodology) to a focused topic area.

Model for Improvement: A tool for accelerating improvement that addresses three fundamental questions (What are we trying to accomplish? How will we know if a change is an improvement? What changes can we make that will result in improvement?) and engages in tests of changes.

Plan-Do-Study-Act (PDSA) Cycles: Used to rapidly test and implement changes by planning a change, trying the change, observing the results, and acting on what is learned. The PDSA cycle guides the test of a change to determine if the change is an improvement.

Section 504 Accommodation Plan: The unique educational program for eligible students required by Section 504 of the Rehabilitation Act and the Americans with Disabilities Act.

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