2023 Early Hearing Detection & Intervention Conference
March 5-7, 2023 • Cincinnati, OH
DUKE ENERGY CONVENTION CENTER
3/07/2023 | 9:40 AM - 10:10 AM | Family Leadership: Learning from Families whose Child is Deaf-Blind | DECC 211
Family Leadership: Learning from Families whose Child is Deaf-Blind
Deaf-blindness is one of the lowest incidence disabilities. Families work through grief and trauma while also at a loss as to where to go when their child with complex needs has a myriad of diagnoses, specifically D/d/HH and vision impairment. Challenges in connection with medical and educational systems exist due to the complex and rare nature of the disability. It is described as “compoundingly complex” and “multiplicative, not additive” by researchers like Ferrell (2014) and Corea-Tores, et al. (2016). This means there is a layering impact of D/deaf + blind + rare, complex needs, including medical, cultural, geographical, financial, etc.
Our deafblind network places a high value on empowering families as early as possible to lead change in building appropriate supports for their child throughout their lifespan. We believe that all families and professionals working with children with disabilities and their families can learn from each other as they lead their families. In this session, families who have children that are deafblind will be sharing their diverse perspectives on family engagement and their complex journey in family leadership, including the grief that can bring new purpose to families' lives. Participants will gain insight into the isolation families may experience in their journey and how the resilience of families can empower change and true leadership. Following the session, participants will be able to apply this knowledge to their own work and experiences to meet families where they are and provide families with meaningful information and resources to build lasting change.
- Participants will identify deaf-blindness as a unique disability.
- Participants will recognize the shared perspectives of families whose child’s primary disability is Deaf/deaf/hard of hearing (D/d/HH).
- Participants will be able to determine the complex family systems they must navigate for their child who is deafblind and has complex needs.
Presentation:
3420032_15523JanaVillemez.pdf
Handouts:
Handout is not Available
Transcripts:
3420032_15523JanaVillemez.docx
Presenters/Authors
Jana Villemez
(), National Center on Deaf-Blindness, jvillemez@helenkeller.org;
Jana is the Family Engagement Initiative Lead at the National Center on Deaf-Blindness. She is a Licensed Clinical Social Worker with experience in hospice, palliative care, behavioral health, and 11 years as the Family Consultant for Arkansas' state deafblind program. She believes strongly in meeting families where they are and empowering them by building their family voice. She is also a wife, mom, mother-in-law, and grandmother!
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.
Heather Dirks
(), Iowa Deafblind Project and Iowa EHDI, heather.dirks@iaedb.org;
Heather Dirks is a mom to four children, the oldest of which is Deafblind. She works for both the Iowa Deafblind Project as the Family Engagement Coordinator as well as Iowa EHDI as the Family Support Coordinator. Her experience in raising a child who is deafblind with multiple disabilities has given her the unique ability to relate to other families with similar circumstances. Her passion is in helping families find support and resources for their children and she really enjoys being able to support families in both of her roles.
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.
Amanda Campbell
(), South Carolina Deafblind Project, amanda.campbell82@gmail.com;
Amanda Campbell is married and a mother to 3 children, two of which have Usher Syndrome. She enjoys reading, DIY home improvements, and music. She serves on the Advisory Council for Educating Students with Disabilities for South Carolina Dept of Ed and has found a passion for advocating for equal access for people with disabilities. She also enjoys connecting with other families as she finds storytelling as a powerful tool for connection, processing, education, and empathy. Her journey in raising two children with a progressive disease has taught and continues to teach her more than just about the diagnoses, but also about advocacy, education, grieving and hoping, and confidence to persevere. Her hope is to pass these lessons to her children and to others.
ASHA DISCLOSURE:
Financial -
• Receives Grants,Other financial benefit for Other activities from AG Bell.
• Receives Other financial benefit for Other activities from SC DHEC.
• Receives Gift,Other financial benefit for Other activities from University of South Carolina.
Nonfinancial -
• Has a Institutional,Religious (SC Dept of Education) (Member of a Christian church, Radius Church)
relationship for Volunteer teaching and speaking,Volunteer membership on advisory committee or review panels.
AAA DISCLOSURE:
Financial -
Financial relationship with AG Bell, SC Dept of Ed Advisory Council for Educating Students with Disabilities, and university of South Carolina RLLA study.
Nature: Grant to pay for hearing aids and FM equipment from AG Bell.
Gifts and pay for travel and participation in research for language and literacy by University of SC
Preschool committee member and volunteer member on SC ACESD.
Nonfinancial -
No relevant nonfinancial relationship exists.