Virtual Town Hall Frequently Asked Questions

The National Center is here to support any individual or organization at the local, state or national level working to enhance the system of services for CYSHCN and their families. We are available to answer questions on some of the following topics (this list is not exhaustive):

• Improving the system of services for CYSHCN
• Implementing the Blueprint for Change
• Increasing access to care
• Improving health equity for CYSHCN and their families
• Medical home implementation
• Financing for CYSHCN and their families
• Transition from pediatric to adult health care

Examples of how we provide technical assistance include:

• Presenting at your organization’s team meeting, grand rounds, lunch and learn or other events
• Meeting with your organization’s leadership team and/or project advisory council 
• Connecting you to experts in your states, jurisdictions, or at the national level
• Facilitating connections to other resources and partners
• Developing tools/resources
• Hosting town halls, webinars, office hours and other virtual events  

• Individuals and/or organizations can contact the National Center directly by emailing [email protected]. 
• Alternatively, individuals and/or organizations can also contact any of the National Center’s Consortium partners for technical assistance and support. The National Center welcomes referrals from other organizations for technical assistance and support. 

Members of the National Center Consortium includes organizations with decades of knowledge and specific expertise to move the field forward. The Consortium includes:

• American Academy of Pediatrics, previous home to the National Resource Center for Patient/Family Centered Medical Home
• Boston University, home to the Catalyst Center National Center
• The National Alliance to Advance Adolescent Health, home to Got Transition National Center
• Family Voices, home to the Leadership in Family/Professional Partnerships National Center

Consortium members will build on past experiences, lessons learned and expertise of these technical assistance centers to inform and support the work of the new National Center. Additionally, the Consortium will continue to offer technical assistance and support on many of the same topics covered by these previous entities, including medical home implementation, financing of services and transition to adult centered care.

The National Center is available to provide technical assistance and support to any individual or organization at the local, state or national level involved in the system of services for CYSHCN, including clinicians.

Support offered through the National Center will include, but is not limited to, some of the following activities:

• Technical assistance as outlined in previous FAQ responses.
• Development and publication of the Blueprint Implementation Roadmap, which will include evidence-informed and evidence-based strategies for Blueprint implementation among a variety of partners, such as clinicians.
• Virtual educational sessions focused on how all partners within the system of services, including clinicians, can play a role in implementing the Blueprint.
• Connecting clinicians to system partners in their states or jurisdictions, including Title V programs, family organizations, individuals with lived expertise, among others.
• Identifying and promoting promising practices for clinicians on how best to collaborate across system partners to improve care for CYSHCN and their families.

People with lived experience/expertise, including families and individuals with disabilities, are at the center of our work. Therefore, people with lived expertise will be involved in all aspects of Center work, including: 

• Families and youth are part of the project’s Steering Committee and National Center workgroups.
• Youth and family affinity groups will be established to support youth and families engaged across the Center. 
• The National Center will be hosting focus groups with families/caregivers and youth related to quality of life and well-being. 
• Families and other people with lived expertise must be members of the state teams involved in National Center initiatives.

• To effectively integrate diversity, equity and inclusion in Center work, it is critical to have the voices of minoritized and underserved communities at the table.
• With that in mind, the Center will intentionally engage diverse youth and families throughout the grant cycle. These youth and families will help to develop policies, processes and practices employed by the Center that are built to address the needs of diverse communities.

• The National Center will be facilitating four different learning collaboratives throughout its 5-year grant timeline. 
• The first learning collaborative has already begun and will occur throughout the first two years of the project (running through June 30, 2025). States have already been selected for this first learning collaborative and include: Michigan, North Carolina, Rhode Island, Texas and Washington. These states were selected based on their existing initiatives to support the system of services for CYSHCN.
• The National Center will facilitate three additional learning collaboratives during years 3-5 of the grant (July 1, 2025 – June 30, 2028). States will be solicited through a “Request for Applications” process with guidance from the project’s steering committee, project partners (including Consortium members and UNC Chapel Hill), and our MCHB project officer. 

• The National Center is implementing its Learning Collaboratives with two core implementation science partners: University of North Carolina Chapel Hill (MCH Workforce Development Center) and Boston University Catalyst Center. 
• With guidance and expertise from these two partners, the National Center will support implementation of change among participating learning collaborative teams by integrating components of the UNC Chapel Hill/MCH Workforce Development Center “Learning Journey” model as well as lessons learned from the Boston University Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) project.
• A few frameworks/tools will be integrated to support implementation science efforts, including the StrategEase Tool, the Theoretical Domains Framework, the Behavior Change Wheel and the UNC Workforce Development Center Results-based accountability framework.
• For additional information on how the National Center will support implementation of changes across states, feel free to contact [email protected]. 

The National Center is proactively working to ensure alignment with other MCHB funded initiatives and reduce duplication. 

• Representatives from other MCHB funded initiatives, including CYSHCNet and the Family Engagement and Leadership in Systems of Care, are included on the project’s steering committee and will be invited to serve on individual project workgroups. 
• Additionally, staff within the National Center Consortium also serve on steering committees/workgroups for these projects to support further information sharing.
• Materials and resources from other MCHB funded National Centers will be included in the project’s environmental scan.
• The National Center team is also collaborating closely with MCHB to support further alignment and collaboration with other MCHB funded initiatives. 

• This National Center focuses on the population of children and youth with special health care needs (CYSHCN) broadly, as defined by the Maternal and Child Health Bureau. Included in this population are children/youth with a variety of chronic conditions, including those who are deaf/hard of hearing, on the autism spectrum and have mental/behavioral health conditions.
• With that said, the National Center’s activities are not specifically focused on any one particular diagnosis or condition. Rather, our work is inclusive of any child, youth, and family/caregiver within the CYSHCN population. Therefore, all of our resources, education and technical assistance efforts will be applicable to children with a variety of diagnoses/conditions. 
• We encourage members of the public with further questions on this topic to reach out to our National Center directly for technical assistance and support.

• The Blueprint for Change Access Domain includes recommendations to prioritize continuity between services, including between pediatric and adult systems. They also call for simplifying the navigation across service systems. These two recommendations can be used to promote pediatric and adult health care collaborative arrangements and to call for public programs serving children to emphasize transitional coverage and coverage, working in partnership with adult public program services. 

• To support minoritized communities in obtaining recommended transition to adult services, community health centers and school-based health centers should implement a structured transition process, using the Six Core Elements of Health Care Transition.

• The Blueprint for Change highlights the need to drive towards a population health approach, not an increase in providing direct or clinical services. The publication of the Blueprint for Change and the administration of the National Center for a System of Services by the AAP does not indicate an increased desire for Title V programs to provide more direct services. 
• Current Title V Block Grant guidance (at the time this FAQ document was developed) emphasizes the need for Title V programs to implement population health strategies to support CYSHCN and include examples of such strategies.
• The AAP and its National Center partners all have a long history of focusing on a population health approach, partnership building and policy analysis and assessment to improve systems of services for infants, children, youth and their families. These approaches will continue to be utilized as the National Center develops its roadmap and actionable strategies/innovations. 
• The Blueprint continues to emphasize and align with the six core indicators of a well-functioning system of services. 
• One of the key goals of this National Center is to develop a Roadmap to support Title V programs in implementing components of the Blueprint. 

• Programs and services perform better when the people who these programs and services intend to serve are involved in their planning. 
• The Blueprint for Change elevates the need for partnering with people who have lived expertise as a key component to build equitable systems. Making partnering a part of the process, a key component of the strategy, instead of an afterthought means that it is expected. 
• For example:
  
  • When new grant or project proposals are considered, they can be evaluated to assure appropriate partnering. 
  • When program/project expansion is considered, engaging in partnerships from the start can help assure that the goals of the program are aligned with needs. 
  • Overall, the Blueprint for Change helps individuals and organizations see that partnership is fundamental to success.
• Organizations can leverage the Blueprint for Change to highlight the evidence and need for partnering with those who have lived experience across all levels of service delivery

• Medicaid is a state administered program that is jointly funded by states and the federal government. All Medicaid programs are required to provide access to any Medicaid-coverable service in any amount that is medically necessary, regardless of whether the service is covered in the state plan. Achieving not just parity, but excellent care will require multiple policy changes in all Medicaid programs at the national, state and systems levels.
• Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) in Medicaid. 
• There are many variations in how care is provided and what is defined as medically necessary care. Two variations that often surface are: 1) Coverage for home and community based services vs. institutional placement for children and 2) Adequacy and quality of care coordination/ integration for children with medical complexity.
• Some ideas/suggestions for how this can be accomplished are outlined below:
  
  • At a national level: Provide tools and resources to define these three elements and work with state Title V programs to assess their implementation consistently across states. 
  • At a state level: Support state Title V programs in communicating the need for these services to Medicaid, Managed Care Organizations, and other relevant partners. 
  • Families should be involved or spearheading these efforts as they are often the most effective partners.
• It is important to note that the provider-based care coordination/integration that is needed by many families is distinct from managed care provided case management.  Managed care case managers and other care coordination entities should collaborate so that families have access to both community-based services as well as a source of payment for them. 

• Comprehensive interdisciplinary care is defined in the National Care Coordination Standards for CYSHCN. Specific tasks and assessments should be included in the local definition as well.  
• Some aspects of this care integration, if not seen as primarily medical or those services to support children with disabilities, may be considered outside of the scope of EPSDT technically, but should be seen as essential for the wellbeing of the child and family. All efforts to promote and implement comprehensive interdisciplinary care should take a holistic view of the family and caregiver.
• States have developed their own specific programs. Many of these programs are the result of partnerships with policy makers, payers (Medicaid), families/caregivers, and health care providers. Since many relationship-based programs may be vulnerable due to program or policy staff changes, it’s important to support continuation of these programs through statutes or state rules for longevity/sustainability. Continuous outcome evaluation of these relationships is also critical in showcasing the impact of the work. 
• Examples of some programs include:
  
  • Wisconsin has a multi-site complex care clinic program that supports intensive care coordination for children with medical complexity. Two keys to its success are the time invested in relationships between the providers in the program and Medicaid staff and secondly, time to carefully document the amount of service provided, by whom and the staff costs.
  • Austin, Texas has a complex care clinic that has a similar model and has coordinated complex care exceedingly well.  Their funding flows through the Texas Medicaid managed care program.  
  • Massachusetts recently enacted its “CARES for Kids” program which defines centers to provide care, children who qualify for services, services to be provided and a payment rate based on the cost of providing these services.  

• Case management and care coordination services should ideally support screening for and addressing social needs. There are many different strategies for financing care coordination roles. 
  
  • Care coordination can be paid for in Medicaid managed care models where the state Medicaid agency pays the managed care organization a per member per month (PMPM)rate to provide care coordination. 
  • Care coordination services are also paid for by Medicaid and other payors, also it is more rare for commercial insurance to pay for care coordination, especially for case management focused on non-medical needs, like social determinants of health. 
  • There are examples of Title V programs that are paid by Medicaid for care coordination they provide. 
  • Title V programs also use their Block Grant funds to pay for care coordination services that their staff provide.  

Resources:  

• The Care Coordination Conundrum and Children and Youth with Special Health Care Needs  
• National Standards for Care Coordination for CYSHCN  
• Financing Approaches to Address Social Determinants of Health via Medicaid Managed Care: A 12-State Review  
• Addressing Social Determinants of Health via Medicaid Managed Care contracts and 1115 Demonstrations  
• Prioritizing Social Determinants of Health in Medicaid Accountable Care Organizations (ACO) Programs: A Conversation with Two Pioneering States  
• Developing Financially Sustainable Child Health Transformation: Lessons from Primary Care Innovators  
• Sustainable Financing Approaches for Medicaid Managed Care Organizations to Address Health-Related Social Needs  
• New CMS Guidance on Addressing Social Needs through Medicaid: Implications for States, Managed Care, and Health Systems 
• National Center for Complex Health and Social Needs/Camden Coalition 
• Complex Care Journal 
• Medicaid Reimbursement of Title V Care Coordination Services  
• Improving Care Coordination for Children with Medical Complexity: Exploring Medicaid Health Home State Options 
• The Catalyst Center’s resource page on financing strategies of care coordination for CYSCHN  
• The National Care Coordination Academy, a project of the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN)   

• While some states allowed parents to be paid for caregiving to a child, many states expanded paying family caregivers as a result of state flexibilities during the COVID-19 pandemic. 
• Most states that pay parents as caregivers have done so related to Certified Nursing Assistant (CNA) and Personal Care Attendant positions. 
• Parents can be paid as caregivers primarily through one of two models: 1) the agency model in which the parent is employed by a Home Health agency, and then assigned to provide care to their child by the agency; 2) the self-directed service model in which Home- and Community-Based Services are self-directed and the family “hires” the parent to provide care to the child.    

Resources:  

• Paying Family Caregivers through Medicaid Consumer-Directed Programs: State Opportunities and Innovations 
• State Approaches to Reimbursing Family Caregivers of Children and Youth with Special Health Care Needs through Medicaid 
• Paying Family Medical Caregivers for Children’s Home Healthcare in Colorado: A Working Medicaid Model 
• Family Caregivers as Paid Personal Care Attendants in Medicaid  
• Most States Plan to Continue Medicaid Home and Community-Based Flexibilities Implemented during the Public Health Emergency