Supporting the CYSHCN Workforce – Using the National Standards as a Key Resource
August 2019

Paige Bussanich
Senior Program Manager, CYSHCN
The Association of Maternal & Child Health Programs

Contributions from:
Sarahna Moyd
Arkansas Department of Human Services
Division of Developmental Disabilities, Title V CYSHCN Program
Hawaii State Department of Health
Children with Special Health Needs Branch, Title V CYSHCN Program
University of Iowa
Division of Child and Community Health, Title V CYSHCN Program 

According to an Association of Maternal & Child Health Programs analysis of Public Health Workforce Interests and Needs Survey data, “72% of MCH workers only last through one Title V five-year Needs Assessment process.”

This indicates a higher turnover rate than the rest of the public health workforce, and loss of institutional knowledge and needed capacity. For Title V programs, the five-year needs assessment is an important process to understand the complexity of the systems and the interrelated components that shape health, identify needs, and select priority areas of focus. Frequent workforce turnover challenges state programs in transitioning programmatic work and oversight, and in maintaining key partnerships and stakeholder relationships. These are particularly important for Title V CYSHCN (children and youth with special health care needs) directors and staff, as ensuring high-quality systems of health care requires services and support from multiple systems such as health, education, and social services.

The 2017 CYSHCN Program Profile Report identified the following areas for improved capacity in CYSHCN program leadership and collaboration:

​  Reimbursement & financing systems

​​  CYSHCN Program support within state government agencies & private sector (i.e. public & private payors)

​​  Financial capacity and leadership

​​  Data management capacity

​​  Cultural Competency

One key tool to help Title V CYSHCN programs develop leadership and workforce capacity is the National Standards for Systems of Care for CYSHCN, which are designed as an essential framework for state health policymakers, Title V programs, providers, and health plans to work together to ensure systems of care for CYSHCN and their families are comprehensive, coordinated, and family-centered.  Since their release, 74 percent of state Title V Programs report using, adapting, or applying the National Standards in several ways, as described below.

Summary of Reported Title V Utility of National Standards

Below, we highlight how three Title V CYSHCN programs utilize the National Standards to improve workforce capacity.
Workforce area: Advocating for program support within state government and private sector (i.e., pediatric, primary care, and specialty care providers) in developing a competent CYSHCN workforce.
Arkansas’ Division of Developmental Disability Services’ Children’s Services used the National Standards to provide educational outreach, training, and access to materials and tools to providers and other public health professionals.
• Referenced the National Standards in educational materials to provide an overview of the state’s Title V CYSHCN program and services/resources available to CYSHCN and their families.
• Included language from the National Standards in a brochure and cover letter introducing Title V CYSHCN to primary care physicians and for use by Title V care coordinators interfacing with parents, community leaders, providers, hospitals, and partners outside the state Department of Human Services.
• Collaborated with Arkansas Leadership Education in Neurodevelopmental and Related Disabilities program to coordinate training content on topics aligned with the National Standards and MCH Core Leadership Competencies, including:
o children and families as active, core partners in all levels of care (via family transition interviews)
o team-based care provided in a medical home (via clinic observations), and
o community-Based Services and Supports (through providing autism screening in a rural outreach clinic)
Workforce areas: Building family leadership capacity and advocacy in working within health care systems, and building capacity for primary care providers to treat CYSHCN within their practices.
Iowa used the National Standards to train staff and caregivers working to improve NPM 11 – Medical Home.
• The Iowa Family Leadership Institute trains caregivers and families in advocacy and the National Standards.
o Curriculum developed from MCH Leadership Competencies and the National Standards provided foundation for three training modules: Transition to Adulthood, Medical Home, and Family-Professional Partnerships.
o Family Navigator Network leadership uses the National Standards to guide thinking about the role of the Family Navigator – especially related to community-based services, supports, and Family Professional Partnerships.
• The Standards provide a framework for Shared Plans of Care (SPoC) to assure issues affecting CYSHCN health are identified and accessible across systems and activities.
o Iowa prioritizes the use of shared goals for all direct services within the medical home as outlined in the National Standards’ framework.
o Iowa tracks “Goal-Setting” in clinical services as outlined in its SPoC framework through a cloud-based platform available to families and providers to “ensure that the plan of care is accessible, retrievable, and available.”
“We reference the Standards when providing training to staff about what guides our choices. It helps to have a document such as the standards as evidence that we are tying our choices to something bigger than just … internal ideas. This adds credibility.”
  – Jean Willard, program manager, Child Health Specialty Clinics/University of Iowa, 2018 Title V National Standards survey results
Workforce area: Improving the use of data in program management
Hawaii developed an evaluation framework based on the National Standards and Six Core Elements for Health Care Transition in pediatric health care settings. By connecting program monitoring and evaluation data to the Standards, Hawaii can track and assess program performance in developing and assuring high-quality, coordinated program services for transitioning CYSHCN with an 11-item scale.
• Hawaii’s evidence-informed strategy measure assesses the use of transition planning into service coordination for youths/families enrolled in CYSHCN services.
• The Hawaii CYSHCN section developed a Transition Readiness Assessment Checklist to assess the child’s readiness for transition and to identify activities that will prepare a youth to transition to adult health care, as well as My Path to Adult Health Care, a flowchart of activities to prepare all youth for transition in areas of healthy habits, life skills, and adult health care. The Path also reminds families about children/youth practicing simple life skills early to build their confidence and knowledge for more complex responsibilities as they mature.
The National Standards support sustainable workforce development and may be used as a maintenance tool to improve capacity of the CYSHCN workforce and address key workforce needs. For Title V CYSHCN directors and staff, the Standards provides guidance to bring structure and coordination across efforts to provide equitable health services. For more information on the National Standards, including a toolkit with plentiful resources, visit: