Family Engagement: CALL TO ACTION!

Authors: Jana Villemez, Family Engagement Initiative Lead, National Center on Deaf-Blindness (NCDB). The following Family Engagement Coordinators, dedicated state deaf-blind leaders, were also part of the Process Review Team that contributed to this article: The National Family Association for Deaf-Blind (NFADB); Edgenie Bellah (TX), Molly Black (PA), Faith Young (IL), and Heather Dirks (IA).

Keywords: family engagement, deaf-blind education, communication, unique needs, call to action, Family Engagement Coordinator, FEC, National Center on Deaf-Blindness, NCDB, family voice, partnership, positive outcomes, National Family Association for Deaf-Blind, NFADB

Abstract: TX SenseAbilities is excited to share the Family Engagement Report from an important initiative facilitated by the National Center on Deaf-Blindness (NCDB). This report, The Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind (2022), seeks to elevate family voices and is a Call to Action for all families of children with disabilities, not just those with children who are deaf-blind, and the professionals who work with them. Family engagement is the focus for all the articles in this special issue of TX SenseAbilities, and we welcome responses, reactions, and questions. We invite you to examine all the articles in this special issue and think about the ways they might apply to your family or impact your practice.

Family members are the most important people on the educational team and in the life of a child or youth with deaf-blindness. They are the one consistent presence as children move from early intervention to school, and then transition to adult life. Educational settings change and practitioners come and go, but the family is always there.  National Center on Deaf-Blindness (NCDB), For Families webpage 

Family engagement for the deaf-blind network is recognizing and honoring the family as the child’s primary teacher and champion, elevating family voices to provide equitable service delivery. We believe The Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind report, developed by families whose children are deaf-blind, guides this work. We are excited to bring it to you to inform your work as well!

The National Center on Deaf-Blind (NCDB) and approximately 33 state deaf-blind programs with Family Engagement Coordinators (FECs) have worked for many years to enhance family engagement and bring to life what the established research has found: families who are engaged in their child’s education are a high indicator of positive outcomes for the child. For families whose child is deaf-blind, the research is limited, but powerful. The unique disability of deaf-blind, its diversity, and the very complex nature of deaf-blindness require that families play an integral role with the professionals and the many programs that affect their child, including medical, educational, and state and federal programs. This is a paradigm shift for medical and educational professionals, as well as for the families. We are moving away from the expert model of professionals having automatic expertise to a family-centered approach where professionals collaborate and act with families, as experts on their child. Professionals are understanding that with informed options, families are best situated to make decisions based on their unique needs. 

Besides listening to and learning from families, family engagement also requires the processes and procedures of the establishment to evolve. Medical and educational systems need to include and value the family information in their interdisciplinary work around the child, regularly and consistently asking, where is the family input for this child? The onus is not just on whether the family attends the IEP meeting or makes all the medical appointments. They should also ask: 

  • What is the professional doing to genuinely engage with the family? 
  • What is the professional doing to better understand the family and their circumstances? 
  • How are they adjusting the ways in which they respond to families, accepting them without judgment?  

When families receive individualized and meaningful information, connect with other families, and are provided with a trusting and safe space to tell their story, they are empowered to better lead their own family. In many cases, this also provides a voice for other families.

The Family Engagement Report is the voice of over 100 diverse families with a child who is deaf-blind. This includes our state deaf-blind program Family Engagement Coordinators and our national family organizations which include The National Family Association for Deaf-Blind (NFADB), NFADB state affiliates and ambassadors, The CHARGE Syndrome Foundation, The Usher Foundation, The Global Foundation for Peroxisomal Disorders (GFPD), and The Cornelia de Lange Syndrome Foundation. This report guides the support NCDB provides for state deaf-blind programs and their FECs. 

NCDB and the state deaf-blind program Family Engagement Coordinators Peer Learning Community meet monthly and use the report to guide their work with families across the nation. Practical applications for each direct service priority outlined in the report brings the report to life. For example, in meeting families where they are in their journey and capacity to engage, we have been building family voices through families connecting with each other, learning how to tell their story, validating their expertise, and presenting their story to professionals. FECs who have a child that is deaf-blind have gone through this process, presented at professional trainings, and will be piloting the learning process in 2024 for families in their state. The objective is for families who can confidently tell their story to provide significant insight in their partnership with professionals who need the family’s expertise in order to provide individualized services and support. 

Since the report was published on the NCDB website, our state and national partners have deepened their partnerships as the awareness of the value of family engagement has been raised. Families and their stories have been presented at several webinars and conferences, including Texas Coffee Hour, the NFADB Deaf-Blind Experience, and the American Printing House FamilyConnect webinar. TX SenseAbilities is proud to share information here. 

We believe in families and their ability to influence change for their child and others. We are beyond excited to move the work of families to another level, embracing the change  and intentionally incorporating the family voice for the wellbeing of the child. Please join us and contact your state deaf-blind program to learn how you can share in elevating family voices!


National Center on Deaf-Blindness. (2022). The value of family engagement: Identifying       unique needs and priorities of families with children who are deaf-blind

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