Family Leadership
Family Leadership for EHDI Stakeholders
Equitable partnerships between families and early intervention programs and systems are critical to the success of EHDI programs and the achievement of optimal outcomes for children. Family leadership and involvement are critical when developing policies and programs to ensure that the systems of care support a genuine reflection of the day-to-day challenges and opportunities facing families.
An organizational culture that prioritizes and facilitates family leadership is vital to sustain and improve mechanisms for family engagement and partnership over the long term and across the EHDI system.
Imagine a family leader with ‘all the right stuff’ – how would this make the areas you, as an EHDI stakeholder, are seeking to improve better for all? How does having Family leaders involved improve the supports you are seeking for families?
- It can improve the planning process.
- It helps you carry out the mission of the program.
- It increases your knowledge and skills.
- It helps you do a better job.
- It brings fresh perspectives to problems.
- It provides an ally to advocate for better services for children and families.
- It increases your empathy for and understanding of families
- It brings about better consumer satisfaction because there is a team effort in providing what the child and family need.
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 eNewsFamilies who have the following qualities can indeed lead your system to better services for the next family on the journey through your state’s EHDI system. These qualities include:
- Ability to share insights and information about their experiences in ways that others can learn from.
- See beyond their own personal experiences and represent the needs of other families
- Families with other communication modes, special needs, medical/cultural viewpoints of deafness
- Respect the perspectives of others.
- Speak comfortably in a group with candor.
- Work in partnership with others.
Sometimes parents who have not had the opportunity for training, are placed on boards to offer input. Often there is only one parent and this parent is meant to represent all parents. The parent comes infrequently, and this becomes the measure of parent disinterest in the issue. Advisory Board meetings are indeed important in that they determine the policy direction and overall goals of the EDHI system. However, if the parent is not taught how a board works, how to represent others outside their self and how to represent other families, the parent will not come with bounding enthusiasm or offer ideas. Parents need to be treated as equal stakeholders in the process and co-production of the system. If not, the parent will usually feel quietly incompetent with few attachments to participation.
Your support as a professional for family leadership development can help to ensure that meaningful and positive family exist in your state/territory. Parents can be effective partners in improving care for infants who are deaf/hard of hearing.
Professionals and Families working together as partners
As noted in A Conceptual Model of Healthcare Service Coproduction healthcare services should not be viewed as a ‘product delivered’ but is better conceived as a service. Services are always co-produced by service professionals and service users. Good outcomes are more likely if the patient (family/consumer/youth) communicate effectively, develop a shared understanding of the problem and generate a mutually acceptable evaluation and management plan. This includes ‘duality’ of satisfaction by professionals and consumers (end users) This model encourages the idea of moving away from ‘what’s the matter with you’ to ‘what matters to you’ and can create a culture where co-creation and generosity grows, and productive relationships form more naturally.
(Coproduction of healthcare service, Armstrong, Lisa et al. BMJ Qual Saf published online September 16, 2015) http://qualitysafety.bmj.com/content/early/2015/09/16/bmjqs-2015-004315.abstract
EHDI 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.
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
- 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:
Diversity, Equity and Inclusion Guidelines that can help in all areas of planning development:
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
http://www.fv-ncfpp.org/
JCIH Supplement – Goal 8
http://pediatrics.aappublications.org/content/131/4/e1324