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.

Families 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)

Evaluating Family Engagement in your EHDI System

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.

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

Association of Maternal & Child Health Programs – Family & Engagement

National Center for Family Professional Partnerships

JCIH Supplement – Goal 8