Bringing Home the Family Engagement Priorities: Part 1

Authors: Edgenie Bellah, Family Engagement Coordinator, Texas Deafblind Project, Outreach Programs, Texas School for the Blind and Visually Impaired (TSBVI)

Keywords: family engagement, direct service priorities, communities, elevating family voices, decision-making, inclusion, family cultures, federal policy, shared responsibility

Introduction

In the Texas SenseAbilities Special Issue on Family Engagement (August, 2023), we shared foundational information about the Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind (Family Engagement Report). If you haven’t had the opportunity yet, we invite you to check out the Special Issue to learn about the family experiences and needs that served as a call to action for this national initiative. We also hope you will continue to reflect on the family engagement definition, as it also serves as the guidepost for leading the systems change efforts for families with children and adults who are blind, have low vision, and are deafblind. 

For this issue, we will focus on the first three priorities included in the Family Engagement Report. We are excited to share with you articles by individuals and families that emphasize the importance of working together to make these three priorities driving forces for family engagement efforts in Texas. 

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. Two sets of priorities resulted from this work:

1. The Direct Service Priorities are intended to drive the work of technical assistance providers as they partner with families in navigating supports and systems. 
2. 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.

Direct Service Priority 1:  Meet families where they are.

Providing meaningful interaction, developing genuine relationships, and assessing the family’s needs is paramount. This can be accomplished through an unbiased conversation with the family. Based on an understanding of the family’s needs and where they are in their journey, provide a safe space for the family to share and acknowledge the unique life experiences and complexities of being a family with a child who is deaf-blind. Giving permission for all family members to prioritize self-care creates a healthier family.

What this looks like in practice

• Connecting families with programs and resources that meet their diverse needs based on their lived experience, culture, education, and learning style
• Remaining sensitive to when and how families want to engage
• Recognizing that your priorities may not align with the family’s; family priorities may change over time
• Offering interpreting services to enhance the family’s connection to the state deaf-blind project and partnering organizations
• Helping families understand the range of self-care options available, such as:
  • Connecting families to resources for mental health
  • Sharing/connecting families to information about respite care and family support offered through the state
  • Offering webinars on self-care, such as mindful self-compassion
  • Identifying organizations in your state and communities that provide childcare free of charge
• Educating families that “Parent Counseling” can be chosen as a related service in the Individualized Education Program (IEP; listed under IDEA)

Direct Service Priority 2: Grow family connections with other families and with the deaf-blind community.

Based on an understanding of the family’s needs and where they are in their journey, support each family member in the comfort of knowing that they are not alone. Offer connections with other families for them to learn, grow, and find purpose and meaning as they share their stories.  

What this looks like in practice

• Offering a range of opportunities to connect families within the state deaf-blind project and partnering organizations 
  • Hosting regular gatherings (virtually, in person, regionally, phone calls)
  • Pairing families with another family to gain support from each other
  • Offering annual membership for families to organizations 
  • Connecting families to state and national family organizations 
  • Supporting families to attend conferences to gain knowledge and connection
  • Creating a family-to-family support network in your state
• Communicating with families in their preferred mode (e.g., hosting social media pages, email blasts)
• Introducing families to others who are deaf-blind
• Promoting partnerships with individuals active in the broader disability community

Direct Service Priority 3: Deepen professional sensitivity and understanding of the unique experiences and needs of individuals who are deaf-blind and their families.

Provide consistent, ongoing, clear, and meaningful information on the range of characteristics of children and youth with deaf-blindness and their families. Use consistent language for families, early interventionists, school-age personnel, higher education programs, and medical professionals. Implement knowledge of the unique needs of families and the need for professionals and families to partner together to learn from each other.

What this looks like in practice

• Providing medical and educational teams training about the needed family engagement role, understanding the broad diversity of families with a child who is deaf-blind, and how to assess and listen to the family
• Providing training to families about the importance of personnel with training in deaf-blindness, including teachers, paraeducators, and interveners
• Exploring a consistent spelling and definition of the word “deaf-blind” to help ensure it is commonly understood and used equitably for eligibility

There are eight Direct Services Priorities in the Family Engagement Report. The remaining five will be addressed in future issues of TX SenseAbilities along with the four Systems Change Priorities. We encourage readers to share their stories, reflections, and suggestions for making these priorities part of the family engagement efforts in Texas.