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Special Edition: Title V Technical Assistance MeetingExpand Special Edition: Title V Technical Assistance Meeting
Title V Technical Assistance Meeting

 Using the National Standards as a Framework for Partnering with Others

​Using the National Standards as a Framework for Partnering with Others to Improve Outcomes for CYSHCN


Augusta Bilbro

Director, Children and Youth with Special Health Care Needs Program, Mississippi Department of Health -

Marsha Stepensky

Program Analyst, Children and Youth with Special Health Care Needs, AMCHP -

Paige Bussanich

Senior Program Manager, Children and Youth with Special Health Care Needs, AMCHP -


Title V Children and Youth with Special Health Care Needs (CYSHCN) Programs address challenges that are often complex in an ever-changing landscape. Title V CYSHCN agencies are critical partners, and often they are leaders of multisector collaborations aimed to eliminate siloes and advance common goals. The National Standards for Systems of Care for CYSHCN is a helpful framework to bring together nontraditional (such as community-based organizations, community health workers) and traditional partnerships (such as family-led organizations, health systems) to collaborate to improve systems of care for CYSHCN and their families. Almost all states are using the National Standards in their Title V Block Grant programs (see figure 1). Forty percent reported they have used the National Standards as a partnership tool. In this newsletter, we shine the spotlight on how Mississippi has used the National Standards to build partnerships that strengthened the system of care for CYSHCN in the state.

Figure 1. States that implement the National Standards in Medicaid and Title V MCH Block Grant programs [1] 

Mississippi’s Approach to Building Partnerships in their State to Increase Access to Systems of Care for CYSHCN

The Mississippi State Department of Health’s CYSHCN Program collaborates with a diverse array of partners to increase access to a comprehensive system of care for CYSHCN from birth through 21 years of age. The overarching goal of Mississippi’s CYSHCN Program is to improve the quality of life of CYSHCN, by aligning program strategies with the National Standards.  


As with all public health programs, building avenues for new partnerships and strengthening existing partnerships is paramount for achieving successful outcomes and long-term sustainability. Establishing a system of care requires participation from internal and external partners. The Mississippi State Department of Health CYSHCN Program collaborates with effective partners to achieve its priority of comprehensive systems of care (table 1).


national map.png


Table 1. Aligning CYSHCN Program strategies with effective collaborating partners [2] 


National Standards System DomainCYSHCN Program Strategy/ActivityCollaborating Partners
​Health Information Technology / Access to Care​Enhance communication and access to information among health care providers, CYSHCN, and their families
  • Community Health Center Association of Mississippi
  • Mississippi Rural Health Association
  • Mississippi Chapter of the American Academy of Pediatrics (MS-AAP)
​ Medical HomeEstablish cross systems of care coordination in cooperation with community-based, family-led organizations to offer families training in leadership, self-advocacy, and the importance of having a medical home
  • Delta Community Solutions, LLC 
  • Families as Allies of Mississippi 
​Community-Based Services and Supports​Increase community-based services and support for CYSHCN and families by providing respite care and linking families to services and resources
  • The Mississippi Families for Kids
  • Mississippi Chapter of the American Academy of Pediatrics  
  • Mississippi Access to Care Network 
​Transition to Adulthood​Assist CYSHCN families and caregivers with advocating for their rights and establishing transition plans of care with adult providers 
  • ​The University of Southern Mississippi—Institute of Disability Studies
  • Living Independence for Everyone (LIFE) of Mississippi  


Interview with the Mississippi State Department of Health

Paige Bussanich and Marsha Stepensky, both from AMCHP, interviewed Augusta Bilbro, Director of the CYSHCN program at the Mississippi State Department of Health, to gain knowledge of their process for establishing and nurturing partnerships to strengthen their systems of care. Below are examples on how the Mississippi CYSHCN program has used the National Standards in collaborations with other state partners to strengthen systems of care for CYSHCN and their families.


Can you share examples of when you have used the National Standards in collaborations with state partners to strengthen systems of care for CYSHCN and their families? 


Example 1. In 2018, the Mississippi State Department of Health CYSHCN Program met individually with partnering organizations who were part of the CYSHCN Leadership Committee to learn about their vision, priorities, and service offerings. The CYSHCN Leadership Committee is an action-oriented body. Parents and caregivers of a CYSHCN comprise 40 percent of this committee. During the first convening of the CYSHCN Leadership Committee, members of the CYSHCN Program delivered presentations to show how the National Standards can be applied to address the challenges that CYSHCN and their families face in coordinating care with providers. 


At the meeting, members received copies of the National Standards to gain participant buy-in. After the initial meeting, the CYSHCN Program developed the scope of work identified in the meeting to create a plan to implement the work in accordance with the National Standard domains. The CYSHCN Program team analyzed and identified areas of overlap; this allowed partners to collaborate to successfully implement the National Standards and measure their outcomes. Through this model, providers, community-based partners, and caregivers would have a platform to increase collaboration, advance peer-to-peer learning, facilitate resource sharing, and reach a broader segment of the population served. 


Since then, the CYSHCN Program and Leadership Committee members have presented on domains in the National Standards at national, state, and local conferences for public health professionals, health care providers, community partners, youth with special health care needs, and families and caregivers. Through the presentations, the CYSHCN Program was able to provide a clear, holistic understanding of the CYSHCN Program’s efforts to integrate a system-level approach in communities, and eventually statewide.  


Example 2. Recently, the CYSHCN Leadership Committee formed the Parents and Caregivers Advisory Council to develop syllabi and properly train care coordinators and parent consultants. The CYSHCN Program and Leadership Committee also developed their own Families’ and Caregivers’ Guide based upon the National Standards care coordination domain. The objective of this guide was to ensure that CYSHCN not only have a shared plan of care, but also transition and emergency plans, located in one centralized manual. The guide also includes other useful tips, tools, and resources to broaden its scope and usability. Care coordinators in Mississippi are advised to use the Families’ and Caregivers’ Guide to educate and empower families to serve as champions for quality health care, access to services, and overall improvement of quality of life across the lifespan for youth with special needs. 


Conclusion. The National Standards support sustainable collaborations and may be used as a framework to convene partnerships tasked with working toward improving systems of care for CYSHCN and their families. The National Standards provide guidance to Title V CYSHCN directors and staff to help structure and coordinate multisector efforts to provide equitable health services for CYSHCN. For more information on the National Standards, including a toolkit with abundant resources and additional collaboration-focused case studies, visit