The Importance of Medical Homes for Children and Youth with Special Healthcare Needs

February 25, 2015   |  Tags: Blog   |  Tags: CYSHCN , Pediatrics , Panel Management
Colleen Reuland, OPIP

With the current climate of health care reform at both the federal and state levels, the concept of medical home has become quite the hot topic in the last decade. The concept of medical home was first introduced in 1967 by the American Academy of Pediatrics (AAP) as a model specifically designed for children and youth with special healthcare needs (CYSHCN).

Since then, medical home as a concept has spread widely, culminating in the joint principles developed in 2007 by the AAP, AAFP, AOA, and ACP and the development of national tools, such as the Patient Centered Medical Home designation by the National Committee for Quality Assurance. Here in Oregon, there is the state-specific definition and certification process through the Patient Centered Primary Care Home Program.

Given the need to control health care spending, conversations around medical home have seemed to drift toward a focus on adults with chronic conditions, as this population presents with significant need, at significant costs. Unfortunately, this often leaves medical home work for children secondary, even though this is a population that could benefit most from what medical home is all about


Who are CYSHCN? 

The Maternal and Child Health Bureau defines CYSHCN as “those 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.”    

There are two points in this definition that make that are important to consider in the context of a medical home:

  1. There must be the presence of a condition (not necessarily a diagnosis)
  2. They utilize more services than would be expected normally

Addressing children and CYSHCN requires a fundamentally different approach that can be used with adults with chronic conditions that may be caused by lifestyle choices. Furthermore, the model of medical home and its connection to community-based services such as school, early intervention, and home visits is critical to promote thriving and family supports.


The Need

 While the numbers of the CYSHN population are relatively small (as compared to adults), they represent a significant percentage of health care costs for children. For example:

  • CYSHCN represent roughly 15-20% of the childhood population and account for 80% of the healthcare expenditures for all children
  • Children with chronic physical, mental, behavioral, and emotional conditions make up 14-16% of the pediatric population and account for 30% of the total health care costs
  • 5% of patients make up 40% of hospital costs

There is also an unquantifiable cost to families of CYSHCN. In the absence of a high functioning medical home, families are required to become care coordinators in addition to their role as the care taker of the child.  Families of CYSHCN articulate frustration at being unable to “parent” their children due to the overwhelming demands of navigating the complex systems of care and often at least one family member is not able to work.   


In Order to Serve a Population, You Must be Able to Identify and Manage Them 

Over the last five years, the Oregon Pediatric Improvement Partnership (OPIP) has been working with practices who care for children to enhance their level of medical home for CYSHCN. A robust summary of the key learnings and feasible tools used in practices can be found on our website.

Specifically, OPIP has supported practices to develop methods for:

  1. Identifying CYSHCN. This process is quite different for CYSHCN than adults, for which a small set of chronic conditions can identify a majority of adults with special health care needs. Based on the applied work with practices, OPIP developed a brief on approaches to the identification of CYSHCN that can be accessed here.
  2. Pre-visit PlanningForms that can be used by care coordinators in pre-visit planning with CYSHCN families. 
  3. Developing Shared Care Plans for CYSHCN. Care planning is a critical component of care coordination; proactive management and care planning for high-risk patients has been shown to improve outcomes and reduce the cost of care. This webinar provides an introduction to developing standard care plans that meet PCPCH and ACA requirements. We also hear from practices who have successfully implemented care plans into their adult and pediatric practices. They share information, resources and tools to help other practices adopt successful care planning strategies. 


An Opportunity for Practices to Receive Support to Become PCPCHs and Improve the Level of Service Provided to Children and Youth with Special Health Care Needs (CYSHCN)

OPIP is a partner on the Oregon Center for Children and Youth with Special Health Needs (OCCYSHN) federal grant-based project focused on improving systems and services for children and youth with special health care needs (CYSHCN). OPIP is leading project efforts focused on Increasing the Number of PCPCH Certified Medical Homes in Oregon. Given the focus on PCPCH in our state, OPIP has expanded the focus of the project to also include:

  1. Enhancing certified practices’ PCPCH scores; and
  2. Enhancing large Family Medicine practices’ focus on children overall, and specifically for CYSHCN


What Does the Project Involve?  What is the Benefit to Practices?

OPIP is an organization with extensive quality improvement experience related to PCPCH and care for CYSHCN. This project would involve support for five practices to become PCPCH certified, or if already certified, to enhance their levels of PCPCH for their pediatric patients and for CYSHCN. Practices will receive support for this work through:

  1. Monthly on-site visits from a skilled practice facilitator
  2. Feasible and actionable quality improvement tools, and methods for enhancing PCPCH for CYSHCN. These tools are based on previous work that OPIP has led with pediatric and family medicine practices across the state, and include strategies related to population management, care coordination and shared care plans, self-care management and support, and collaboration and integration with community-based resources. These tools will be provided through webinars and the group-level ListServ that will be created for the five sites.
  3. Part IV Maintenance of Certification Credits for meaningfully engaged, board certified providers in the participating sites. OPIP has designed the project to collect evaluation data, and to support quality improvement efforts that align with MOC certification requirements.

Practices are being recruited to start the project in Summer 2015, and will last for approximately one year (through Fall ’16). In addition to the above technical assistance, resources, and MOC credit, practices will receive a small stipend. Given the goal of the project, recruitment is being targeted to the following:

  • Uncertified pediatric practices
  • Pediatric practices with a Tier 1, Tier 2, or Tier 3 PCPCH certification with a point total between 130-250
  • Large PCPCH Certified Family Medicine practices who see a significant number of children and want to improve care for children and youth with special health care needs


Who Do I Contact if I am Interested, or Know of Potential Practices?

Please contact OPIP’s Director, Colleen Reuland, at or 503-494-0456. More information about OPIP is available