Bringing Home the Family Engagement Priorities at the State and National Level
Authors: Edgenie Bellah, Family Engagement Coordinator, Texas Deafblind Project, Outreach Program, Texas School for the Blind and Visually Impaired (TSBVI)
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Introduction
Imagine a world where every family with a deafblind loved one feels connected, empowered, and supported. The Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind report is a blueprint for understanding and addressing the unique needs of these families. If you haven’t explored the full report, now is the time to discover its transformative insights, rooted in real-life experiences that are driving a national movement.
This article dives into the actionable state and national priorities that emerged from this work. These priorities aren’t just plans; they’re a call to action. They challenge us to break barriers, ensure equity, and create a network of support where families are not only recipients of change but also its architects.
TX SenseAbilities is pleased to share articles written by individuals and families that highlight how these priorities come to life—locally and nationally—and why they matter for families, professionals, and advocates alike. To learn how individual families are doing this important work, we invite you to read other articles in the Family Wisdom section of this issue of TX SenseAbilities: “A Voice of One for Many,” by Christine Givens and “Changing Lives at Becka’s House” by Krystal Winget. Join us in bringing these priorities home and making a lasting impact on the future of family engagement.
Excerpts from the Family Engagement Report:
A Bit About the Priorities
The Family Engagement Priorities emerged from a five-month visioning process facilitated by the National Center on Deaf-Blindness to illuminate state-level priorities and national-level supports for families of children who are deaf-blind. This work generated two types of priorities:
- The Direct Service Priorities are intended to drive the work of technical assistance providers as they partner with families in navigating supports and systems.
- The State and National Priorities for Systems Change outline the next steps intended to expand synergies in services for families with individuals who are deaf-blind.
State and National Priority 1: Ensure continuity and equitable resourcing for family engagement across states and territories
It is imperative that funding sources and services be consistent so that family engagement supports that are offered can be equitable across the deaf-blind network. By enhancing national family connections and sharing resources, unbiased and consistent delivery of information is promoted.
What this looks like in practice
- Creating a clear explanation about what the state deaf-blind project does, what families can request, and how families can engage in project activities
- Including representation from each state deaf-blind project in the Family Engagement Coordinator Peer Learning Community (FEC PLC)
- Collaborating with other state deaf-blind projects to offer events
- Post events highlighting activities that families and professionals can attend on the NCDB website
- Promoting the inclusion of families on boards at the local, state, and national level
- Collaborating with state agencies and organizations (e.g., vocational rehabilitation agencies, state chapter of Hands & Voices)
State and National Priority 2: Deepen the reach and impact of national organizations to the local family level
The plurality of national organizations supporting families living with deaf-blindness can be confusing and, at times, appear duplicative to families. Families need clarity and ease of access to all available organizations, resources, supports, and services. The work of national organizations is most effective when it filters down to impacting the lives of families and their loved ones.
What this looks like in practice
- Creating a one-stop tool that provides a list, description, and connection to ALL entities that can support families across the lifespan
- Providing high-quality, accessible, bite-sized information that addresses family needs
- Disseminating information at conferences, presentations, and events
- Being attuned to opportunities to engage with state-level initiatives to bring awareness to individuals with complex medical needs and deaf-blindness (e.g., governor’s committees, education reform efforts)
- Partnering with organizations and agencies to enhance services for families; identifying commonalities in services and support (e.g., Parent Training and Information Centers (PTIs), Community Parent Resource Centers (CPRCs))
- Holding regular interagency meetings to disseminate information
State and National Priority 3: Network nationally to expand each organization’s individual capacity to support family engagement. “We are better together!”
The needs of families with a loved one who is deaf-blind are so diverse, complex, and constantly evolving that no one person or entity can adequately support them. Capitalizing on the services, strengths, relationships, and programming available nationally allows professionals and families to effectively construct a constellation of family support opportunities while ensuring families’ voices and experiences are honored.
What this looks like in practice
- Providing families a menu of national supports, including those not deaf-blind specific, to empower them to select their preferred supports and services
- Creating a multi-agency referral form for families
- Creating an event or activity that brings together professionals/providers from a variety of organizations (e.g., educational, medical, recreational) to share information about services
- Creating a resource list that is categorized by region and types of services (e.g., educational, medical, recreational)
- Enhancing partnerships with Helen Keller National Center regional representatives
- Participating in planning and hosting regional conferences with national groups
- Cost-sharing a state deaf-blind project family engagement coordinator (FEC) across states with limited funding
- Requesting a support letter from the Office of Special Education Programs (OSEP) to encourage state departments of education to work with state deaf-blind projects
- Creating a common project measure about family engagement
State and National Priority 4: Establish written collaborative agreements for family engagement across national partner organizations
Partnerships require communication, trust, and accountability. This holds true for family engagement. Formal collaborative agreements with national partner organizations ensure that everyone sitting at the table has a clear understanding of their role and responsibilities in supporting family engagement.
What this looks like in practice
- Creating collaborative agreements with national partner organizations
- Developing and implementing concise strategic planning using a work plan consistent with the collaborative agreement
- Including a family release form at intake that includes a list of organizations and their missions that families can connect to
- Maintaining contact with partnering organizations to maximize consistency