2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
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| Family Support and Leadership: the Blueprint for Success
Family Support and Leadership: the Blueprint for Success
In 2022, HRSA released the Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs. (PEDIATRICSVolume149, numbers7, June2022:e2021056150B) The 4 critical areas center around the issues families consider most important to strengthen the system of services: health equity, quality of life and well-being, access to services, and financing services. Drawing from the work of the Blueprint for Change, this session will bring to life the four areas for EHDI stakeholders, focusing on the role of family and D/HH leaders in addressing the unique needs of families with children who are D/HH.
This interactive session will provide key strategies and practical insights to ensure that the EHDI system is strategically focusing on the four areas of the Blueprint, building upon what has been done, and what family-based organizations in partnership with state/territory EHDI programs can do to ensure a strong and healthy system.
- Explore and practice the applications of the newly released Hands & Voices Family Support Activities Guide.
- Discover the markers of ensuring equity in supports and services to families of children who are D/HH
- Develop strategies and tools to set sustainability goals, including financial viability.according to HRSA's Blueprint for Change.
Presentation:
3478265_16219JanetDesGeorges.pdf
3478265_16219LisaKovacs.pdf
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Sara Kennedy
(Co-Presenter), Hands & Voices, Sara@handsandvoices.org;
Sara is a mom of four children, including a daughter born at home and later-identified as deaf after a progressive loss. An occupational therapist by training, Sara has served at Hands & Voices since 2001 as the editor for the quarterly newspaper, the Communicator, and a trainer for the educational advocacy program, ASTra. Sara has a particular interest in advocating for hearing screening in the homebirth community. She was a coauthor for the Virtual Waiting Room web presence at Hands & Voices, the handbook Bridge to Preschool: Navigating a Successful Transition as well as articles and presentations on topics ranging from children's safety, promoting self-advocacy, the decision process around cochlear implants, and supporting fathers and rural families. Sara transitioned out of her role as Director of Colorado Hands & Voices (2011-2022). She finds her new consulting role with young adult children rewarding and challenging.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Janet DesGeorges
(Primary Presenter,Co-Presenter), Hands & Voices, Headquarters, janet@handsandvoices.org;
Janet DesGeorges lives in Boulder, Colorado and is Executive Director of Hands & Voices Headquarters and the P.I. for the FL3 Center. Janet has presented to groups worldwide about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges received a program certificate from the MCH Public Health Leadership Institute in 2011 at the University of North Carolina – Chapel Hill.
As an EHDI Systems advocate, Janet believes in the principles and guiding philosophies of Hands & Voices towards a parent-driven, professionally-collaborative approach when supporting families in the early years. Her areas of interest include Leadership Development for parents who participate in systemic improvement; Deaf Education Reform and Improvement; Children’s Safety and Success(preventing child abuse and neglect); Early Hearing Detection and Intervention Systems; and Parent/Professional partnerships in Quality Improvement processes.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Carrie Balian
(Co-Presenter), Illinois Hands & Voices Guide By Your Side, cbalian6@outlook.com;
Carrie Balian is the mother of five children. Her oldest child, Jack, was born deaf. Carrie and her husband, Andre, have been married for over 25 years and reside in Island Lake, IL. She has been the Coordinator of her state Parent to Parent support program, IL Hands & Voices Guide By Your Side (GBYS) for over 13 years. In continuing her ventures of representing families of children that are deaf and hard of hearing, Carrie has presented to groups nationwide and co-authored several publications including the NCHAM e-book. Carrie is currently serving as a board member on the Illinois Universal Newborn Screening Advisory Council and Illinois Hands & Voices. She is also an editor for JEHDI (Journal of Early Hearing Detection & Intervention) publications, participated on the Illinois Universal Newborn Hearing & Screening Advisory Board and Illinois Deaf Task Force. She has also participated as a parent professional on the NICHQ (National Institute for Children’s Healthcare Quality) national and statewide learning collaborative teams. In 2021, Carrie graduated from the Hands & Voices L2L (Leadership to Leadership) development cohort and in 2022 was awarded the EHDI Family Leadership Award. Carrie had the pleasure of participating in two national projects: FEHDI (Family EHDI) to help determine data points and definitions for family-based organizations for grant reporting purposes and VSV/Virtual Site Visit team that created materials and information to help support families before and after newborn hearing screening and the hospital teams that carry out newborn hearing screening. Carrie has also been recognized and awarded both nationally and locally for her support, commitment, and leadership in the field. Her educational background includes a bachelor’s degree in Marketing and Management.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Lisa Kovacs
(Co-Presenter), Hands & Voices , lisakovacs@handsandvoices.org ;
Lisa Kovacs is the Director of Programs for Hands & Voices Headquarters and the Director of the Family Leadership in Language and Learning (FL3) Center. She and her husband Brian have four young adult children including her son who is hard of hearing/deaf. Lisa was the 2019 Antonio Brancia Maxon Award for EHDI Excellence recipient. Her professional interest include; Parent Advocacy; Implementation of parent participation and engagement in systems building; Parent to Parent support; Deaf Education Reform; IDEA, ESSA, Part C and Part B Training to Parents, and Parent Leadership Training and Development.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Terri Patterson
(Co-Presenter), Hands & Voices, terri@handsandvoices.org;
Terri Patterson is the Director of Chapter Support for Hands & Voices, Coordinator of the H&V Leadership-to-Leadership (L2L) Program, and a member of the core management team for Hands & Voices Family Leadership in Language and Learning (FL3) Center. Her passion stems from her family, specifically her son who was born profoundly deaf in 1999. Through her personal experiences raising, supporting and advocating for her son, as well as navigating the systems that support children who are D/HH, she provides perspective, herself, as a hard of hearing adult. Her leadership skills continue to grow as she trains and provides technical assistance to over 50 Hands & Voices Chapters and efforts across North America through one-on-one training, leadership development, state and national conference presentations and national organizational engagement with NAD, NCDB, HRSA.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Rosabel Agbayani
(Co-Presenter), Hands & Voices, Rosabel@handsandvoices.org;
Rosabel is the Consultant for Underrepresented Populations for Hands & Voices Headquarters and member of the Board of Directors for California Hands & Voices. She is the Chair of the Poway Unified School District Special Education Community Advisory Committee and Secretary of the Asian American Native Hawaiian Pacific Islander Target Resource Group for Rady Children's Hospital in San Diego, California. She is a mother of a child who is deaf/hard of hearing. She has a Bachelor of Arts in Human Development, Bachelor of Science in Communicative Disorders & Deaf Education, and a Masters in Public Health Specializing in Health Promotion. With her lived experience and her experiences working with low-income families and at-risk youth from a variety of cultural backgrounds, she understands the importance of family engagement and empowerment by building community capacity through education and advocacy. In all that she does, her spirit of collaboration is the driving force for creating a positive movement for the benefit of ALL children, especially those who are Deaf or Hard-of-Hearing. Her hope is to continue to build on the ideal of Family-Centered Care giving parents the access to comprehensive information from a wide variety of community resources. Rosabel hopes to bridge those essential connections within the community to enable children who are Deaf or Hard-of-Hearing reach their highest potential
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Hands & Voices.
Nature: Staff Consultant for Underrepresented Populations .
Nonfinancial -
No relevant nonfinancial relationship exists.
Ana Brooks
(Co-Presenter), Hands & Voices, ana@handsandvoices.org;
Ana is a mother of two children residing in Oregon. She is brought to this work due to her oldest child not passing their newborn hearing screening. She is grateful to have experienced guidance from a parent guide early in our journey which led to positive outcomes in her child’s D/HH journey and to have been able to provide that same service to many families herself as a former parent guide.
Her passion and drive is aiding our Hispanic/Latino/x communities from her own lived experience lens. She has experienced and seen the hardships many parents face when attempting to navigate services in a different language. Ana has a unique perspective necessary to identify the many common communication gaps in the D/HH community experience. She continuously seeks ways to collaborate with other family organizations and systems of care to provide outreach and support to D/HH children and their Spanish-speaking families and Latino/x communities . Her work is to assure all information being shared to families is culturally and linguistically appropriate.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Elizabeth Shuler-Krause
(Co-Presenter), Hands & Voices, Inc., Elizabeth@handsandvoices.org;
Elizabeth is Hard of Hearing/Deaf and is the mother of two awesome children. Elizabeth is an Early Intervention/Early Childhood Teacher of the Deaf and Hard of Hearing and was formerly the Deaf and Hard of Hearing Adult Involvement Project Manager at the National Center for Hearing Assessment and Management (NCHAM). Elizabeth became the Co-Coordinator of DHH Infusion at Hands & Voices HQ in spring of 2023. Elizabeth is passionate about increasing family engagement through systems improvement, as well as ensuring opportunities for families to connect with leaders who are DHH.
ASHA DISCLOSURE:
Financial -
• Receives Consulting fee for Consulting from Hands & Voices.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Hands & Voices.
Nature: Consultant for Hands & Voices.
Nonfinancial -
No relevant nonfinancial relationship exists.