Best Practices and Lessons Learned From the Public Health Disability Specialists Program: Addressing the Needs of People With Disabilities During COVID-19.

CONTEXT: The Association of State and Territorial Health Officials (ASTHO) and the National Association of County and City Health Officials (NACCHO) applied funding issued by the US Centers for Disease Control and Prevention (CDC) to implement the Public Health Disability Specialists Program, part of a project to address the needs of people with disabilities during the COVID-19 pandemic. Disability specialists (subject matter experts) were embedded within state, territorial, and city/county health departments to help ensure disability inclusion in emergency planning, mitigation, and recovery efforts. OBJECTIVE: To evaluate the success of the Disability Specialists Program in improving emergency response planning, mitigation, and recovery efforts for people with disabilities within participating jurisdictions. DESIGN: Disability specialists worked with their assigned jurisdictions to conduct standardized baseline health department needs assessments to identify existing gaps and inform development and implementation of improvement plans. CDC, ASTHO, and NACCHO implemented a mixed methods framework to evaluate specialists' success. SETTING: State, territorial, and local health departments across 28 jurisdictions between January 2021 and July 2022. MAIN OUTCOME MEASURES: Average number of categories of gaps addressed and qualitative documentation of strategies, barriers, and promising practices. RESULTS: Specialists identified 1010 gaps (approximately 36 per jurisdiction) across eight needs assessment categories, most related to mitigation, recovery, resilience, and sustainability efforts (n = 213) and communication (n = 193). Specialists addressed an average of three categories of gaps identified; common focus areas included equitable COVID-19 vaccine distribution and accessible communications. Specialists commonly mentioned barriers related to limited health agency capacity (eg, resources) and community mistrust. Promising practices to address barriers included sharing best practices through peer-to-peer networks and building and strengthening partnerships between health departments and the disability community. CONCLUSIONS: Embedding disability specialists within state, territorial, and local health departments improved jurisdictional ability to meet evolving public health needs for the entire community, including people with disabilities.

Assessing the newborn screening education needs of families living in medically underserved areas.

Newborn screening (NBS) is a public health service available to all babies born in the United States (US). NBS is one of the first experiences families have in the US healthcare system with a new baby. A positive experience with NBS can give families a strong start to their child's health care and build trusting relationships with providers. A lack of easily accessible NBS education for families can exacerbate health inequalities through negative interactions with the healthcare system. Expecting Health, a maternal and child health education and advocacy initiative of Genetic Alliance, partnered with RTI International to implement an online survey assessing needs and preferences around NBS-related health education, with a particular interest in those of families living within medically underserved areas (MUAs). A total of 500 participants completed the survey, including 200 participants living in MUAs. The results of the survey showed that, compared with US families living outside of MUAs, families living in MUAs are generally less aware of NBS and do not receive NBS education at the optimal time (i.e., before birth), which could indicate they experience inequities in NBS education. While families across different geographic areas seem to have similar preferences in terms of content for NBS education, the results show that some distinct communication methods are needed to reach families living in MUAs. To bridge the gap in NBS education to families living in MUAs, the Expecting Health team built an online NBS educational module, using preferred communication methods-specified through the survey-for families living in MUAs.

A Newborn Screening Education Best Practices Framework: Development and Adoption.

Newborn screening is a process-based public health service. Newborn screening staff and families alike are essential to maintaining the timeliness of the screening process. Newborn screening education must be accurate and accessible. Past newborn screening conferences have highlighted gaps in best practice and evidence-based guidance on newborn screening education. Sharing successful strategies across programs mitigates the scarcity of resources by cutting costs and reducing the burden of work. These factors illustrate the need for an education framework to guide newborn screening education efforts. The Newborn Screening Education Best Practices Framework responds to these issues by outlining guidance for newborn screening education approaches. Experts in the fields of newborn screening, genetics, and bioethics as well as previous research on best practice guidelines have contributed to the development of this framework. The framework outlines a process for users to evaluate newborn screening education approaches as best practices. This framework reviews best practices using a two-step approach, looking at guiding questions, implementation of the newborn screening issue, and evaluation. The framework helps the user define the characteristics of the newborn screening issue, intended audience, and practical steps to implementation, and then decide whether or not it can be used as a best practice.