A4 - "Let Me Tell You About My Amazing Child! Using CYSHCN Data"

The typed transcription of this session can be found HERE

Full Description: An American Academy of Pediatrics article defines children and youth with special healthcare needs (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." CYSHCN have conditions that are expected to last more than 12 months, are often diagnosed with more than one condition, and frequently experience several functional difficulties, including respiratory issues, learning or behavior concerns, difficulty with gross or fine motor skills, or chronic pain. Since 2010, the Innovative Approaches (IA) Initiative in North Carolina works to make systems changes that provide CYSHCN and their families access to better, more coordinated, and culturally competent healthcare. Of the 22 counties to date impacted by IA, 16 (73%) of the counties are classified as rural. IA specifically focuses on CYSHCN ages 0-21 and supports the development of community-based and family-focused systems of care. The IA Initiative is a partnership among Local Health Departments (LHDs), local community partners and healthcare providers who serve CYSHCN, and families of CYSHCN as leaders improving the system of care for CYSHCN. The IA Initiative is funded by the Title V-Maternal and Child Health (MCH) Services Block Grant Program and is supported through the NC Division of Public Health, Children and Youth Branch. It was honored at the 2019 Association of Maternal & Child Health Programs (AMCHP) Conference with a Best Practice Award and is currently being replicated by the PA Health Dept., Bureau of Health. IA is listed in the AMHP Innovation Hub, which serves to highlight best practices in maternal and child health . This virtual presentation will highlight the importance of engaging families and providers in Needs Assessment data research and collection, and how these practices have evolved over the past several years to today’s current pandemic environment. It will address proven strategies to communicate, engage, and excite parents, families, community partners and stakeholders to do the hard work of advocating for the most vulnerable populations. Participants will be provided an overview of the following: (1) Accessing MCH data resources that address the components of a well-functioning system of care for families of CYSHCN; (2) Utilizing Qualitative and Quantitative Data Collection tools and adapting these methodologies to engage parents and providers- including parent and provider surveys and focus groups, community café’ events, texting platforms, and other communication venues; (3) Analyzing data to identify themes and priorities to drive systems change work; (4) Reporting Needs Assessment results to institutional leaders and policy makers to get their support and buy-in; and (5) Developing actionable and sustainable community systems changes within communities' local systems of care.

Abbreviated Description: This virtual presentation highlights CYSHCN Needs Assessment Data Research and Collection including: (1) Accessing Maternal and Child Health data resources that address the components of a well-functioning system of care for families of CYSHCN;(2) Utilizing Qualitative and Quantitative Data Collection tools, methods, and strategies to engage parents and providers- including parent/provider surveys and focus groups, community café’s, texting platforms, and other communication venues; (3) Analyzing data to identify themes and priorities to drive systems change work; (4) Reporting Needs Assessment results to institutional leaders and policy makers to get their support and buy-in; and (5) Developing actionable and sustainable community systems changes within communities' local systems of care.