2023 Early Hearing Detection & Intervention Conference
March 5-7, 2023 • Cincinnati, OH
3/20/2018 | 1:45 PM - 2:45 PM | A H&V Conversation: Engaging Families and Leaders in a Diverse World | Capitol 3
A H&V Conversation: Engaging Families and Leaders in a Diverse World
“We need to give each other the space to grow, to be ourselves, to exercise our diversity. We need to give each other space so that we may both give and receive such beautiful things as ideas, openness, dignity, joy, healing, and inclusion.”— Max de Pree
The Hands & Voices Family Leadership in Language and Learning (FL3) Program supports the development of family leaders in EHDI from diverse cultures and seeks to reduce the disparities for families from underserved populations.
How do we as parent and professional leaders engage families that are different than us? What are the factors that need to be considered in addressing the unique needs of the multicultural families we serve? This panel will offer the opportunity for open dialogue and facilitate the important discussion of diversity within EHDI. The panelists will share their experiences and perspectives on what has been effective within their communities. We will also explore strategies and ideas to ensure that stakeholders in the EHDI system, activities and resources are accessible to communities of diverse racial, ethnic and religious backgrounds. As families receive the initial diagnoses of hearing loss, they need the most support they can get to deal with different emotions, to reach acceptance and seek support.
As we encourage more family engagement, the need to bring information and support in a way that meets their language and cultural needs will be explored. When families get direct support from providers familiar with their culture, language and family dynamics, they will be more engaged, encouraged to seek more information and will be more active stakeholders. When families receive information in a language they can understand, and connect with professionals who understand additional cultural barriers, they will be more engaged. Intervention will be more successful communication and cultural barriers are removed.
- • Build self-awareness and motivation that leads to a greater ability to implement opportunities for enhancing families from other cultures to successfully navigate the EHDI system.
- • Utilize the information identify specific supports for culturally diverse populations needed in an individual state/territory.
- • Empower Families from Diverse cultures to provide leadership in EHDI activities.
Presentation:
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Transcripts:
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Presenters/Authors
Alejandra Ullauri
(), Illinois Hands & Voices, alejandra@chicagohearingcare.com;
Alejandra is an audiologist with extensive experience in the diagnosis and treatment of hearing disorders in the pediatric and adult population. She holds a Doctorate degree in audiology from University of Florida, a Master’s degree in audiology from Flinders University of South Australia, and a Master’s degree in Public Health from Universidad San Francisco de Quito. She is certified by the American Board of Audiology in Cochlear Implants. She held audiology positions in Australia, England, Ecuador and the United States. Her latest position was as Manager of Audiology at the University of Chicago Medicine. Currently, she is the director of Audiology at Chicago Hearing Care, and she participates in the team of experts reviewing the WHO Ear and Hearing Survey Protocol, a collaboration between the World Health Organization and the London School of Hygiene and Tropical Medicine. She serves on the Board of Directors for both Illinois Hands and Voices, an organization which offers supports to parents and families of children with a hearing loss, and Child’s Voice, a listening and spoken language program for children with hearing loss. Alejandra is bilingual (English/Spanish), and deeply committed to the field of Audiology and Hearing Sciences.
ASHA DISCLOSURE:
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Nonfinancial -
Yiesell Rayon
(), Hands & Voices, yiesell@handsandvoices.org;
Yiesell's middle son, Markie was identified at birth with bilateral sensorineural hearing loss. After acquiring her B.A., Yiesell decided to focus on raising her Deaf son. She quickly discovered her passion for offering support and resources to other parents who have DHH children. She applies both her professional and personal experience as an advocate to empower parents to advocate for their own children.
Yiesell is the Director of Latino Support for Hands & Voices Headquarters. Within her state chapter of California Hands & Voices, Yiesell is the LA County Representative. She sits on the EHDI planning committee as well as the NCHAM Parent Advisory Committee representing parents of children who are DHH. She is passionate about supporting parents, but also the professionals who serve them. To better serve and improve Latino family involvement, Yiesell believes there is a demand for heightening awareness of the Latino culture and family dynamics.
ASHA DISCLOSURE:
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Nonfinancial -
Djenne-amal Morris
(), Hands & Voices HQ, djennemorris@gmail.com ;
Djenne-amal N. Morris brings passion, humor, and real-life experience to her role as a national and international
parent/professional trainer, facilitator, and motivational speaker whose view of the world is not as it is, but as it could be. As a mother of an amazing son with CHARGE Syndrome, she strives to build an atmosphere of support and empowerment for families of children with special needs and the professionals who serve them. This has led to her career working with families of children with special needs in various roles as Women’s Ministry Leader, and Family Specialist for the New England and North Carolina Deaf-Blind Projects, and
Parent Educator. Professionally, Djenne serves as Family Faculty/Multicultural Advisor for the NC-LEND program at UNC-Chapel Hill. She is a co-author of The Art of Collaboration: Lessons from Families of Children with Disabilities. Djenne holds a BA in Psychology from Clark University and holds a Certificate in Diversity & Inclusion from Cornell University. Djenne and her husband Michael of 30 years have 3 children. Malik, 26, is a graduate of the Eastern North Carolina School for the Deaf. He is independent and living his best life in a group home for Deaf young men. Imani, 27, is a future MPH focusing on Maternal and Child Health. Her youngest Zakiya, 21, is
a graduate of UNC-Chapel Hill and a future Audiologist.
ASHA DISCLOSURE:
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Rana Ottallah
(), Louisiana Hands and Voices, Rana.ottallah@la.gov;
A parent and a dedicated Special Education Advocate interacts effectively with individuals and parents of children with disabilities, schools, districts and the State Department of Education to ensure Free and Appropriate Education for students with disabilities, and appropriate home and community services. Advocates passionately for Deaf Education reform, and Language access for diverse population in the state of Louisiana.
-Special Education Advisory Panel Member (SEAP) – LDOE (2013-2017)
-Commissioner for the Deaf (2016- present)
- Deaf Education Alliance Chair (2016-2017)
-MFP Task Force member 2014
-Louisiana Hands and Voices Advisory Panel Member (2014-present)
-Partners in Policy Making 2013 Graduate
- Driving force behind Act 250- Deaf Child Bill of Rights Amendment
- A member of Louisiana ESSA advocacy group that advises and monitors state implementation plan.
- Faculty members of “Collaborate for students with unique communication needs grant”, as a parent advocate presenting on federal and state laws and regulations (2016-present).
- Executive Board member of MUHSEN (Muslims understanding and supporting Special Education Needs)
ASHA DISCLOSURE:
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Nonfinancial -
Janet DesGeorges
(), Hands & Voices, janet@handsandvoices.org;
Janet DesGeorges lives in Boulder, Colorado and is Executive Director of Hands & Voices Headquarters. 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 exist.
Nonfinancial -
No relevant nonfinancial relationship exist.
Apryl Chauhan
(), California Hands & Voices, aprylchauhan@yahoo.com;
Apryl is the mother of 3 children. Apryl’s journey has brought her full circle. When her daughter was identified with a hearing loss a Parent Links mentor was there to support her family. Apryl is involved with California Hands & Voices, has been a Parent Links Parent Mentor herself, and although her daughter is now a teenager, she continues to mentor other families.
ASHA DISCLOSURE:
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Rosabel Agbayani
(), Rady Children's Hospital San Diego, Rnagbayani@rchsd.org;
Rosabel Agbayani, MPH is a Pediatric Clinical Researcher at Rady Children's Hospital San Diego. She earned a Bachelor of Arts in Human Development from CSU San Marcos, a Bachelor of Science in Communicative Disorders and Deaf Education from Utah State University, and a Masters in Public Health from National University. She is a parent of a child who is Hard of Hearing and the current president of California Hands & Voices.
ASHA DISCLOSURE:
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Nonfinancial -