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 EHDI and Educational Services Practice, michelle.john@hotmail.com ;
Michelle John, MS, CEOLD, holds dual Bachelors of Arts degrees in psychology and sociology, and her Masters of Science degree in community counseling and psychology with a specialization in addictions counseling. She also earned certification as an End-of-Life Doula.
Michelle is the President of Vermont Hands & Voices and Regional Coordinator for national Hands & Voices Regions 1, 2 and 3. She now works for VT EHDI and the VT Educational Services Practice as a Parent Navigator Coordinator. Within these roles, she sits on a variety of Boards, Committees, Coalitions, Panels, and
Councils to further the identified needs of children birth to twenty-one, who
are D/HH/DB/Plus and their families. She feels it is important for families to be
considered a valued and involved stakeholder.
Her highest achievement comes from raising and educating her 3 children by being a “stay-at-home” parent. She was all things medical, educational, and coordination for her 11-year-old DeafBlind+ (Plus) child who had a variety of significant medical and developmental complexities. In tandem, she is a willing teacher to those with questions and a readiness to learn, most often her youngest two children on repeat.
Michelle is deeply passionate about family leadership, the power of choices, NASDSE Guidelines, parents as paid caregivers to medically complex children, the needs of DeafBlind Plus, the power of storytelling and lived experience, sibling support, and the unique challenges faced by families living in rural areas.
Through ongoing attendance and/or presentations at trainings, conferences, webinars, and meetings she stays up to date on best practices and builds a network of connections with stakeholders who can be resources to assist families access valuable resources and support.
One could say Michelle is never bored! In her middle of the night “spare time”, she enjoys reading autobiographies, creating wild goals that sometimes seem unattainable, watching reality television, 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.