2023 Early Hearing Detection & Intervention Conference
March 5-7, 2023 • Cincinnati, OH
DUKE ENERGY CONVENTION CENTER
3/07/2023 | 3:45 PM - 4:15 PM | Engaging Family Leaders in the Newborn Screening (NBS) System | DECC 207/208
Engaging Family Leaders in the Newborn Screening (NBS) System
While newborn screening is a widely known process to many state and national NBS stakeholders, lived experiences and family insights are often missing from the key decision points and system change. Family leaders are knowledgeable about the newborn screening system, understand the complexities within the system and are able to share their lived experiences to improve care for other families. Systems can improve through coordinated effort between NBS family leaders and NBS systems stakeholders.
The Newborn Screening Family Education Program is dedicated to developing opportunities for families to learn about newborn screening as well as training and educational resources that build confidence for families to become leaders in the newborn screening system.
In autumn of 2021, The Newborn Screening Family Education Program established the Navigate Newborn Screening Ambassador program, in which we recruited 12 family leaders representing 10 different states to participate in a 12-month program focused on three key goals:
1. To build community by connecting with other families and developing relationships with local, regional and national newborn screening stakeholders.
2. To develop leadership and advocacy skills through training, practice and application of skills.
3. To increase awareness of the importance and value of newborn screening by sharing stories within your community.
Through a mixture of quarterly meetings, online and live trainings, as well as collaborative learning, this program established opportunities for families to integrate into the newborn screening system. Ambassadors connected with multiple stakeholders, shared their stories through social media, and supported the development of a video storytelling campaign to help raise awareness for newborn screening at the local, state and national levels.
In this session, we will discuss the strategies required to develop, recruit, and facilitate a national family leadership training program that is rooted in local impact, aimed to improve confidence and agency for families to serve as leaders in the NBS process.
- Describe the measurable outcomes of family leadership training including baseline measures of confidence and knowledge in a group of family leaders.
- Share resources to implement family leadership training at the national level.
- Identify opportunities for family leaders to engage with the NBS system at the local, state and national levels.
Presentation:
3420032_15606MichelleJohn.pdf
Handouts:
3420032_15606MichelleJohn.pdf
3420032_15606MichelleJohn_1.pdf
Transcripts:
3420032_15606MariannaRaia.docx
Presenters/Authors
Marianna Raia
(), Expecting Health, MRAIA@EXPECTINGHEALTH.ORG;
Marianna Raia is the Associate Director of Programs at Expecting Health and the program manager for the HRSA funded Newborn Screening Family Education Program. With nearly 15 years of experience as a genetic counselor working directly with families, providers, laboratories and advocacy groups in the rare disease community, Marianna is dedicated to helping patients, providers, and families understand how genetic information can empower you to make decisions about your health and the health of your family. She is committed to improving the experiences of families on their newborn screening and health care journeys.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Expecting Health.
Nature: HRSA grant.
Nonfinancial -
No relevant nonfinancial relationship exists.
Michelle John
(), Vermont Hands & Voices, michelle.john@hotmail.com ;
Michelle holds dual Bachelors of Arts degrees in psychology and sociology from Hofstra University, and her Masters of Science in community counseling and psychology with a specialization in addictions counseling from Springfield College. She also earned her certification as an End-of-Life Doula through the University of Vermont. Currently, she is in the final portfolio stage of becoming a certified DeafBlind Intervener. Michelle is a Newborn Screening Ambassador for Expecting Health, works closely with the National Center on DeafBlindness, and is a governor-appointed member of the VT Developmental Disabilities Council.
While spending many of her beginning adult years enjoying pursuing higher education, and proud of these accomplishments, she's just as quick to share life sent her in a divergent direction; her highest achievement comes from raising and educating her 3 children by being a stay-at-home parent. She is all things medical, educational, coordination and physical care to her 10-year-old DeafBlind+ (Plus) child who has a variety of significant medical complexities, and willing teacher to those with questions and readiness to learn—most often her other two children.
Michelle has been the President of Vermont Hands & Voices since 2018. In this role, she sits on a variety of Boards, Committees, Coalitions, Panels, and Councils to further the identified needs of children birth to adulthood, who are D/deaf/hard of hearing/plus and their families. She is passionate about inclusion of choices, D/HH/Plus adult infusion, all volunteer-organizations, NASDSE Guidelines, parents as paid caregivers to medically complex children, DeafBlind Plus needs, and siblings of D/d/hh/Plus individuals, as well as the vastly differing needs of families in rural living. Spending time in webinars, meetings, trainings, as well as presenting at and fully attending various conferences yearly keeps her up to date on best practices, improving the ability to meet a variety of stakeholders who can become a resource to families across the US and Canada.
In her middle of the night “spare time”, she enjoys reading autobiographies, creating wild goals that sometimes seem unattainable, watching reality television and “American Greed”, and pretending to get some sleep.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with .
Nature: .
Nonfinancial -
No relevant nonfinancial relationship exists.