15th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 13-15, 2016 • San Diego, CA
3/13/2016 | 9:00 AM - 12:00 PM | Pacific Salon 3
The Impact of Family Involvement in ‘Moving the Needle’ in EHDI Systems: Hands & Voices 20 Years Later
Twenty years ago, the role for family involvement in the establishment of EHDI systems was often defined for parents in sharing their stories about the impact of late identification and the need for newborn hearing screening. In today’s world, participation in improvement of statewide EHDI systems incorporates high level parent involvement in areas such as loss to follow up, Quality Improvement initiatives, cultural reciprocity, data collection and analysis, research participation, prevention of child abuse and neglect, and formalized parent to parent support, as well as established educational advocacy programs – while still maintaining that essential ‘parent perspective’ of real life experience.
Hands & Voices has led the way in moving beyond the ‘token parent’ concept to trained parents in positions of leadership with the ability to bring solutions to the table in the gaps that EHDI systems face.
For parents who are moving through the EHDI system in today’s world, the timeliness of services and the delivery of information and opportunities may be more available than it was 15-20 years ago, but some things remain true to this day... the need for an unbiased supported journey, the fidelity of early intervention systems that meet their child’s unique needs,, and ultimately systems that work for them, as they would define it.
- • Explore the history and evolution of parent support and involvement in EHDI systems and current program offerings at Hands & Voices.
- • Address the ways in which parents with newly identified children who are D/HH access information, and need different kinds of support in different formats than the ‘old days’. What’s different and what’s the same?
- • Offer innovative strategies and new innovations which are in development to ‘move the needle’ in the gaps that EHDI stakeholders face today.
Presentation:
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Handouts:
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CART:
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Presenters/Authors
Janet DesGeorges
(POC,Primary Presenter), Hands & Voices, Headquarters, janet@handsandvoices.org;
Janet DesGeorges lives in Boulder, Colorado and is mom to Sara, who is hard of hearing. She is a co-founder of Hands & Voices, serving as the Executive Director since September 2011, and as the E.D. of the Flagship chapter of Hands & Voices in Colorado for 10 years prior to that. Ms. DesGeorges is the author on the chapter for Family Support in the NCHAM e-Book, the co-author of the book Educational Advocacy for Students who are Deaf and Hard of Hearing: The Hands & Voices Guidebook, and many other publications. Ms. DesGeorges received a program certificate from the MCH Public Health Leadership Institute in 2011 at the University of North Carolina – Chapel Hill. Her areas of interest include Leadership Development for parents; Early Hearing Detection and Intervention Systems; Parent/Professional partnerships in Quality Improvement processes.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exist.
Nonfinancial -
No relevant nonfinancial relationship exist.
Lisa Kovacs
(Co-Presenter), Hands & Voices , lkovacs@isdh.in.gov ;
Lisa lives in Greenwood Indiana with her husband Brian and 4 children. Her son has Auditory Neuropathy.
Lisa is one of the founding board members for Indiana Hands & Voices and has been with the organization for over 8 years. She is currently the Program Coordinator for Guide By Your Side(GBYS). She is also the Director for GBYS Hands & Voices Head Quarters. She has extensive training in Educational Advocacy and Parent Support.
Lisa serves on several councils and committees; Indiana Department of Education Special Education Advisory Council, National Deaf Education Summit Committee, and American Academy of Pediatrics EHDI Task Force.
Lisa has a passion for training parents and helping them recognize their strengths and abilities in order to make informed decisions for their child and family. Lisa wants to see that all children who are Deaf or Hard of Hearing have the opportunity to reach their full potential.
ASHA DISCLOSURE:
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Nonfinancial -
Sara Kennedy
(Co-Presenter), Colorado Hands & Voices, Sara@cohandsandvoices.org;
Sara is a mom of four children, including a daughter who was born at home and later identified with a profound hearing loss. An occupational therapist by training, Sara has worked for Hands & Voices since 2000, currently serving as the Colorado chapter director and the editor for the quarterly newspaper, the Communicator, at the Headquarters level. Sara has a special interest in advocating for hearing screening in the homebirth community. She was a coauthor for the handbook Bridge to Preschool: Navigating a Successful Transition as well as articles and presentations on teaching our deaf/hh children about sex, promoting self advocacy, progressive hearing loss, and the decision process regarding cochlear implants. She finds parenting teenagers to be an even bigger challenge.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exist.
Nonfinancial -
No relevant nonfinancial relationship exist.
Stephanie Olson
(Co-Presenter), Children's Hospital, Stephanie.olson@ChildrensColorado.org;
Stephanie Olson works as a Family Consultant for the Bill Daniels Center for Children’s Hearing at the Children’s Hospital of
Denver and the Colorado Home Intervention Program. She draws from her experiences as a D/HH woman. With degrees in special education and social work, Stephanie’s background as a preschool director and as a teacher for students with
special needs has helped her to develop positive relationships with those she serves. During 2009, she was part of a team from Children’s Hospital in Denver that traveled to London, South Africa, Brazil and New Zealand and presented on best practices for addressing auditory neuropathy. Stephanie was identified with a hearing loss at the age of three. In her presentations and her work, Stephanie brings her unique perspective which has been shared with parents and professionals nationally and internationally.
ASHA DISCLOSURE:
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Nonfinancial -
Vicki Hunting
(Co-Presenter), Hands & Voices, vhunting@qwestoffice.net;
Vicki Hunting lives in Des Moines, Iowa with her husband Mark and two daughters; the youngest a young adult with a profound hearing loss. She has worked in project management, process re-engineering and quality/process improvement for over 18 years. In her more recent experience she is a Quality and Operational Improvement Engineer at the University of Iowa, Division of Child and Community Health and trains others on quality improvement approaches to improve systems of care for Iowa's children and youth with special healthcare needs. She has experience using the Model for Improvement as a framework for quality improvement projects; testing, implementing and spreading changes. Using data for improvement, developing and interpreting run charts and control charts, utilization of Plan-Do-Study-Act (PDSA) cycle to test changes are also part of her experiences. Vicki is on staff at H&V HQ and has been involved in the Iowa H&V Chapter for over 11 years.
ASHA DISCLOSURE:
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Nonfinancial -
Terri Patterson
(Co-Presenter), GA Hands & Voices, terripat@earthlink.net;
Terri's experience as a former Early Intervention Parent Educator and a parent of a child with hearing loss has led her into the role of Executive Director of Georgia Hands & Voices. She and her husband, Matt, have two children: daughter Molly, and son, Riley, (who was identified with profound bilateral hearing loss at two months). Degreed in Social Sciences/Psychology, Terri is the Committee Chair for the Georgia Stakeholder’s UNHS Program. She also sits on the National EHDI 2011 Planning Committee, and is co-chair of the CDC’s Early Hearing Detection & Intervention Parent-to-Parent Subcommittee, as well as serving as parent representative to the AAHBEI (American Association for Home-Based Early Interventionists) governing board. Terri is co-author of the DECISION GUIDE TO COMMUNICATION CHOICES published by the CDC, and has spoken a numerous conferences including a plenary presentation at the National Summit on Deaf Education in 2008.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exist.
Nonfinancial -
No relevant nonfinancial relationship exist.