Children with medical complexities (CMC) are a subset of children and youth with special health care needs (CYSHCN) who have:
- Family-identified service needs
- Severe chronic medical conditions
- Functional limitations
- Need for a high level of health resources
CMC require multiple levels of health care (for example, specialists, home health care, and special equipment). According to a 2021 study, about 1.2 million children (or 1.5% of children) have medical complexities.
The goal of this program is to improve the quality, coordination, and experience of care and services for CMC and their families. It recognizes that these systems serving these children are fragmented. It aims to create more cohesive and efficient systems.
Awards
In 2022, we awarded cooperative agreements for a coordinating center and five demonstration projects. The five-year project period began in August 2022 and continues through July 2027.
Read the closed Notice of Funding Opportunity (HRSA-22-088 and HRSA-22-098).
| Awardee | Location | Geographic Service Region | Project Type |
|---|---|---|---|
| Academy Health | Washington, D.C. | United States | Coordinating Center |
| Childkind, Inc. | Atlanta, GA | Atlanta, GA | Demonstration project |
| University of Florida | Jacksonville, FL | Five-county region of northeast Florida | Demonstration project |
| University of Montana | Missoula, MT | Montana | Demonstration project |
| University of Texas at Austin | Austin, TX | Austin, TX | Demonstration project |
| University of Texas Health Science Center of San Antonio | San Antonio, TX | South and central Texas | Demonstration project |
Our reach
While demonstration projects work in specific cities and regions, their findings aim to help other areas of the country. The coordinating center serves all demonstration projects and shares findings and resources to improve public health systems for CMC across the country.
How the Enhancing Systems of Care for CMC program works
The purpose of this program is to optimize the health, quality of life, and well-being of CMC and their families. The program has two parts:
- Five demonstration projects carry out and evaluate patient and family-centered models of health care delivery.
- A coordinating center provides expertise to the demonstration projects so that they can meet their objectives. The coordinating center also develops and broadly shares resources.
The demonstration projects’ models of care should be:
- Accessible
- Continuous
- Comprehensive
- Coordinated
- Compassionate
- Culturally effective
- Patient and family-centered
Visit AcademyHealth’s CMC Coordinating Center website to read about the insights gained from these projects.
The project sites doing this work make sure to:
- Help underserved groups (for example, racial and ethnic minorities or people living in rural areas)
- Aim to reduce disparities between underserved groups
- Optimize use of new technologies (for example, telehealth or mobile applications) so that they better reach underserved groups
- Use effective strategies that take into account family voices, involve teams across health systems, and improve data and information sharing
Providing national leadership and expertise, the coordinating center at AcademyHealth:
- Gathers data and measures the program’s progress
- Supports the demonstration projects through resources and activities (for example educational webinars, data briefs, trainings)
- Shares successful findings and helps other health care systems to learn about and use promising models.
- Evolves the efforts to meet emerging needs
Identifying emerging needs
In 2023, we provided $450,000 in supplemental funding to AcademyHealth.
The funding allows the coordinating center to engage with state Title V programs, state Medicaid programs, families of CMC, clinicians, and health care organizations to support the development of patient- and family-centered complex care health homes.
Key activities of the supplemental funding include:
- Recommending standard definitions around CMC to help all stakeholders move toward the same goal
- Understanding the extent of which health homes for CMC have been adopted at the state level
- Compiling a list of components of a complex care health home
- Developing a toolkit to support states planning to carry out health home models
- Evolving health outcome measures so that we gather better data to inform further improvements
- Convening an affinity group of state Title V and state Medicaid programs to facilitate partnerships needed to implement health home models
Evolving the approach
The program builds on an earlier effort to enhance these systems for children. It was called the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity, known as the CMC CoIIN.
The CMC CoIIN project also tested and spread promising health care delivery strategies. Lessons gained from that work help inform the current project.
More information
Supporting the Blueprint for Change
The Blueprint for Change is a plan to make significant improvements to the systems that help children and youth with special health care needs (CYSHCN).
Though CMC represent a small subset of all children, a 2014 study described that CMC with the highest needs account for 15% – 30% of all health care spending for children. Also, CMC account for 40% of all childhood deaths.
When we strengthen the systems for these children, we improve the chance to save lives, health and well-being, and health services financing.
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Contact us
Need more information, or have a specific question? Contact Victoria Rivkina at VRivkina@hrsa.gov.