Family Leadership in the EHDI System
Family Leadership for EHDI Stakeholders
Imagine a system where family leadership is a central and integral part of the programs. Engaging family leaders in the EHDI system not only provides a platform for families to share their experiences but also strengthens the overall program by incorporating diverse perspectives. Family leaders influence policies and practices to better address community needs, aiding EHDI programs in meeting family engagement and support goals.
Families who have the following qualities can indeed lead in the system to better services for future families.
- Shares insights and information about their experiences in ways that others can learn from.
- Sees beyond their own personal experiences and represents the needs of other families.
- Experiences with other communication modes, special needs, medical/cultural viewpoints of deafness.
- Respects the perspectives of others.
- Speaks comfortably in a group with candor.
- Works in partnership with others.
Below are resources for EHDI Coordinators and stakeholders to assist you in engaging families as leaders in the EHDI system of services.
Spotlight on Success
“Spotlight on Success” is a series of brief articles appearing in the FL3 eNews, featuring strategies family-based organizations/family leaders and Early Hearing Detection and Intervention (EHDI) programs are implementing to foster family engagement.
Read Articles Submit Article FL3 eNewsEHDI Grantee PHASE I/YEAR ONE PLANNING TOOLS for Family-to-Family Support, Family Engagement/leadership, and DHH-to Family Support
The following sections are provided to support the development of mandated statewide infrastructure plans for HRSA funded states and territories (HRSA-24-035) in the areas of Family-to-Family Support, Family Engagement/Leadership, and DHH-to-Family Support elements of the plan.
Overall Infrastructure Plan Guidance
- This guidance is designed to help state/territory Early Hearing Detection and Intervention (EHDI) programs develop a comprehensive infrastructure plan. It corresponds directly with the EHDI Infrastructure Plan requirements outlined in the HRSA-24-036 State/Territory Notice of Funding Opportunity (NOFO), page 11.
[ Download the EHDI Infrastructure Plan Guidance ]
Evaluating Family Engagement in your EHDI System
- Use or develop a self-assessment tool based on the JCIH Guidelines like the EHDI System Self-Assessment Tool.
The EHDI System Self-Assessment Tool was designed to assist leaders who are responsible for Early Intervention Systems after confirmation that children are deaf or hard of hearing. Although the JCIH Guidelines describe best practices in early intervention, they do not specify the exact means to identify where an organization might be in terms of achievement nor do they guide the stages of moving toward higher levels of quality. The ongoing use of an EHDI System Self-Assessment can provide a tangible means of guiding the quality drive and align partners in EHDI system improvement. The tool is intended to be used as an assessment of a state’s full EHDI system as opposed to a specific program, agency or entity. Therefore, this assessment is best completed by a team of state stakeholder, in partnership with the EHDI community and family leaders (e.g. an EHDI Advisory Committee).
[ Download the EHDI Self Assessment Tool ].
- H&V Partnership Continuum Tool – Team Reflection and Planning for the Future
Other ways to ensure Family Leadership within your EHDI system:
- Develop or revise policies and legislation related to EHDI programs that require the meaningful inclusion of qualified families as active participants in the development and implementation of EHDI systems.
- Track and report the number of professional family positions (ie, compensated rather than volunteer) and demonstrate how parents and families are involved in recruitment processes.
- Provide resources (professional development training and mentorship) for families to obtain the necessary knowledge and skills to participate in systems and policy development and demonstrate that training is provided.
- Partner with family-based organizations/family leaders to address the needs of families and to achieve EHDI program goals/desired outcomes. See examples in “Spotlight on Success” articles above.
Evaluating DHH to Family Support in your EHDI System
- NEW! DHH Leader to Family Support Self Evaluation Tool
- This self-evaluation tool is designed to help programs in planning, implementing, and evaluating the strength of DHH Leader-to-Family-Support and DHH engagement in their organization or systems.
- DHH Guidelines: Guidelines for Deaf And Hard of Hearing Mentor/Guide/ Role Model Programs
- This guide offers suggestions for EHDI systems as to recommended practices in provision of D/HH mentor/guide/role model services to families/children.
- A Community of Support: Connecting Families of Children who are Deaf or Hard of Hearing (D/HH) with Individuals who are D/HH
- This Guide contains a planning scale to help EHDI stakeholders assess and provide insight and guidance to any groups looking at establishing programs and/or opportunities for connecting families with D/HH adults.
- DHH PARENTS & ADULTS - TIPS FOR MEANINGFUL PARTICIPATION IN EHDI SYSTEMS
- This guide contains tips for planning throughout recruitment, onboarding, and facilitation of EHDI Advisory Council Meetings to support meaningful engagement of DHH leaders and parent leaders.
More Information to explore:
- Involvement of Adults Who Are Deaf or Hard of Hearing in EHDI Programs. Journal of Early Hearing Detection and Intervention, 4(1), 54-61. Shuler-Krause, E. & White, K. R. (2019). https://digitalcommons.usu.edu/jehdi/vol4/iss1/7/
- This article provides a landscape of DHH to family support nationwide in 2019 by summarizing the findings of a national survey of EHDI programs.
- Joint Committee on Infant Hearing (JCIH): Supplement to the JCIH 2007 Position Statement: Principles and Guidelines for the Early Intervention After Confirmation That a Child is Deaf or Hard of Hearing. http://www.jcih.org/posstatemts.htm
- The NCHAM E-Book: A Resource Guide for Early Hearing Detection & Intervention (EHDI). ( Link to Ehdi-ebook )
Other Resources to Support Planning:
Advancing Diversity, Equity, Inclusion & Accessibility Guidelines.
These guidelines provide background and examples of the value of diverse lived experiences and then culminates in an ever-evolving plan for H&V/FL3 to carry out its mission for the benefit of all children who are DHH and their families. Whether you represent a program, community organization, or are a parent leader, the resources we have packaged will help you build a better understanding of the needs of underserved and underrepresented communities. By focusing on Diversity, Equity, Inclusion, and Accessibility we can do our part to transform our community for all families with children who are deaf or hard of hearing.
Evaluating Family-to-Family Support in your EHDI System
Please go to our Models of Family-to-Family Support page for information on evaluating, assessing, and providing family-to-family support.
2019 H&V FL3 EHDI Coordinator Survey
In December 2019 the FL3 conducted a survey with EHDI Coordinators to collect information about the kinds of data collected by EHDI Programs and/or FBOs around families referred and enrolled in family to family support services and families that were referred and enrolled in deaf or hard of hearing (D/HH) Adult to family support services. In addition, we asked about the kinds of programs EHDI offered that utilize D/HH adults to serve families. The FL3 EHDI Coordinator Survey was open for 3 weeks, from December 18, 2019 through January 10, 2020, and respondents were asked to reply based on their current EHDI program activities. The survey was emailed to 80 contacts from all 59 state/territory EHDI programs on two separate occasions. Individual responses were received from 35 states/territories (59% response rate), including four territories.
Resources for more ideas on how to facilitate family leadership
Tips for Meaningful Participation by Parents and Adults who are Deaf and Hard of Hearing Serving in Early Hearing Detection and Intervention (EHDI) Systems
Specifically, Advisory Committees and Learning Communities
Fostering Family Engagement and Leadership in EHDI Systems:
explores parent/professional partnerships and family engagement in EHDI systems with a direct focus to family leaders. (Webinar from August 31st, 2017)
Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care
http://www.nichq.org/resource/powerful-partnerships-handbook-families-and-providers-working-together-improve-care
Association of Maternal & Child Health Programs – Family & Engagement
http://www.amchp.org/programsandtopics/family-engagement/Pages/default.aspx
National Center for Family Professional Partnerships
https://www.fv-ncfpp.org/category/ncfpp/
JCIH Supplement – Goal 8
http://pediatrics.aappublications.org/content/131/4/e1324