17th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 18-20, 2018 • Denver, CO

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3/20/2018  |   9:40 AM - 10:40 AM   |  Listening to the Parent Voice: Findings from a National Needs Assessment   |  Capitol 5

Listening to the Parent Voice: Findings from a National Needs Assessment

During the last several decades it has become increasingly clear that many public health systems exist only to improve the wellbeing of women, infants, and children. More recently, the federal Maternal and Child Health Bureau (MCHB) has increased their commitment to the inclusion of families in program and resource development—a recent example of this is the new cooperative agreement titled the Family Leadership in Language and Learning Program (FL3). The purpose of this program is to support the development of statewide newborn hearing screening systems by promoting the inclusion of families, parents, and caregivers of deaf or hard of hearing (DHH) infants and children. Hands and Voices (H & V), a parent-driven organization that believes that families can make the best choices for their child who is DHH if they have access to good information and support, applied for and was awarded the FL3 cooperative agreement. H&V contracted long-time partner, the National Center for Hearing Assessment and Management, to develop, administer, and analyze a national needs assessment geared toward collecting information from families of children ages 0-6 years who are DHH, all coordinators of state/territory EHDI programs, and directors of family-based organizations who are contracted with their state/territory EHDI programs. This was the first time that this breadth and depth of information was gathered about family engagement in all 59 state and territory EHDI programs on a national level. In addition to learning about the outcomes of the needs assessment, participants of this session will come away with a better understanding about how to design a national needs assessment, the importance of working with the right partners in conducting a large-scale project, and how data gleaned from the needs assessment resulted in real changes in the resources and services provided by a nationally-funded, not for profit, family-based support organization.

  • Discuss types of support families wish they had when their child was diagnosed as deaf or hard of hearing and what would have been the optimal timing to receive those supports.
  • Summarize what family-based organizations need from the new Family Leadership in Language and Literacy (FL3) program to better serve families who have a child who is deaf or hard of hearing.
  • Identify the supports EHDI programs need to effectively engage families.

Presentation:
15805_7876AlysonWard.pdf

Handouts:
Handout is not Available

Transcripts:
15805_7876AlysonWard.doc


Presenters/Authors

Diane Behl (), NCHAM, diane.behl@usu.edu;
Diane Behl is a Senior Faculty member at the National Center for Hearing Assessment and Management. She facilitates telehealth learning communities and is a co-investigator for cost-effectiveness studies. She has expertise in evaluating the effectiveness of service coordination provided via Part C Early Intervention and Maternal and Child Health programs. Diane was a primary researcher on the EI SNAPSHOT study.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.


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.


Vicki Hunting (), Hands & Voices, vicki@handsandvoices.org;
Vicki Hunting is mom to two adult daughters; the youngest a young adult who is deaf/hard of hearing. She has worked in project management, process reengineering and quality/process improvement and evaluation for over 20 years with experience. Ms. Hunting has experience using the Model for Improvement using Plan-Do-Study-Act(PDSA) cycles as a framework for QI projects. This experience also includes; testing, implementing and spreading changes as well as using data for improvement, and developing and interpreting run charts and control charts. In her current staff position as Director of Data and Evaluation at Hands & Voices Headquarters Ms. Hunting works to ensure data and evaluation functions and practices of the organization are developed and monitored, works on establishing efficient, accurate, and timely data tracking to ensure data quality, integrity, reliability and validity. Vicki has been involved in the H&V in Iowa since it began in 2004.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.


Alyson Ward (), NCHAM, alyson.ward@usu.edu;
Ms. Ward earned a MS in Health Education in 2008 through Utah State University and became a certified as a Quality Improvement Advisor by the Institute for Healthcare Improvement in 2015. For the past 15 years, her career efforts have demonstrated commitment to improving public health through health promotion, education, research, policy development, evaluation, and grant development from the community to national levels. Ms. Ward’s positions and interests provide her with broad and valuable experiences in public health. Currently, Ms. Ward is engaged in learning systems development (e.g., coalitions, learning communities, and collaboratives) and children’s health research (e.g., environmental, viral, and genetic factors) as the Director of Quality Improvement at the National Center for Hearing Assessment and Management, an MCHB-funded technical assistance center. She is also the project coordinator of the CMV (cytomegalovirus) Public Health and Policy Conference and serves on the board of the National CMV Foundation.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.