Skip to content
The Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind

Family Engagement 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 next steps intended to expand synergies in services for families with individuals who are deaf-blind.

Specific details on these two sets of priorities and their implications for practice are outlined in the sections below.


Direct Service Priorities

Meet Families Where They Are

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)

Grow Family Connections

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

Deepen Sensitivity, Understanding of Those Who Are Deaf-Blind and Their Families

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

Empower and Honor the Family

4. Empower and honor the family as the child’s primary teacher and champion.

Families can only advocate for the services that they know exist. Clarity around local, state, and national supports, organizations, and offerings empowers families to make informed choices for their child who is deaf-blind and their family (including extended family members and others who assume responsibility for supporting the individual who is deaf-blind).

What this looks like in practice…

  • Deliberately planning to reach ALL family members 
  • Having the parents be key players in assessment and IEP processes 
  • Giving families access to research and data in bite-size formats
  • Providing professional development for families to share who their child is
  • Formalizing partnerships with university training programs and professional development providers to infuse more content about the importance of family-school partnerships

Strengthen Family and Self-Advocate Voices, Stories, and Confidence

5. Strengthen family and self-advocate voices, stories, and confidence.

Strengthening family and self-advocate voices involves starting where they are, directing them to high-quality resources, helping them confidently share their story (i.e., find their “voice”), and assisting them in their advocacy journey. Every family has something to offer and teach others.

What this looks like in practice…

  • Deliberately planning professional development for ALL family members
    • Supporting self-advocates as they explore their interests, engage in their IEP process, become self-determined, and share their stories
    • Supporting families to share their voices/experiences with families of children with other disabilities and families whose children do not have a disability
    • Providing leadership training for families to help them know how to advocate for systems change and action plans 
    • Providing an honorarium to families to attend training relevant to their child
  • Deliberately planning ways to involve families in systems-level work

Deliver Meaningful Information in Multiple Modalities and Transformative Ways

6. Deliver meaningful information in multiple modalities and transformative ways to reach families in all of their diversity, preferences, and needs at key moments in their personal journeys.

With an equity mindset, offer a variety of opportunities to enable families to participate and engage. This involves helping families navigate key transitions across their child’s life to empower them to celebrate successes and milestone achievements, reflect on lessons learned, and plan for the future.

What this looks like in practice…

  • Preparing families to define plans and appropriate supports to advocate for their child
  • Collaborating as a network to disseminate information in a myriad of languages and formats to meet the growing diversity of the population
    • Creating visual resources using a variety of languages to meet the needs of families by incorporating pictures and minimal text
    • Including a question on forms about the family’s preferred mode/form of communication 
  • Applying adult learning strategies to increase family reach and engagement
  • Thoughtfully planning activities with an equity mindset 
    • Ensuring that native-speaking groups have facilitators who speak their language
    • Including language interpretation in family event offerings 
  • Offering family-driven, person-centered planning sessions
  • Recruiting allies from all cultural backgrounds to foster trust and safety
  • Posting state deaf-blind project information, such as contact information, in visible locations on partner organization websites

Enable Equity of Family Engagement

7. Enable equity of family engagement through universally accessible, culturally affirmative, and unbiased services and supports.

Empower diverse family leadership in all we do through the use of accessible language and by honoring lived experiences. Equality does not equal equity and involves educating everyone–professionals and families–to understand the difference. 

What this looks like in practice…

  • Having cultural awareness of disability and its impact on the family
  • Partnering with and supporting community organizations to meet family needs and assist with identification and referral 
  • When planning, considering how access and privilege play a part in equitable service delivery; assuming interest and competence
  • Developing parent leaders who have children who are deaf-blind from an array of cultures 
  • Collaborating with organizations that work with immigrant and refugee families 
  • Ensuring your state deaf-blind project website is accessible, and information is available in the primary languages spoken by your families 
  • Providing additional resources for families in rural areas 
    • Capitalizing on grants for rural communities
    • Creating positive relationships with teachers and early interventionists
    • Training and building positive relationships with doctors 

Amplify Diverse Family Voices, Inclusion, and Leadership

8. Amplify diverse family voices, inclusion, and leadership at all levels (e.g., classroom; local, state, and national; services, agencies, policy, and legislation; technical assistance systems; and national organizations). “Nothing about us without us.”

Through deliberate mentorship, state deaf-blind projects and other professionals can support families as they take the initiative to assume leadership roles at the local, state, and national levels. Family members need an active seat at the table to improve network partnerships and services. This starts by providing training and support to them to serve in advisory roles and making sure that the representation of families is diverse. Consistently revisiting training plans to include families is essential to equitable services.

What this looks like in practice…

  • Supporting families with different cultural backgrounds as they take positions of leadership
  • Supporting families by leveraging their interests, skills, backgrounds, experience, and comfort levels to help them find their niche in advocacy and connect them to family advocacy groups
  • Inviting families to participate in Deaf-Blind TA Network Peer Learning Communities
  • Connecting the family with their local, state, and national transition services 
  • Partnering with families to provide training sessions to raise awareness about deaf-blindness and family perspective
  • Encouraging families to participate in research studies 
  • Inviting family participation in state deaf-blind project family engagement goals and activities 
  • Mentoring families to participate in national-level work 
  • Seeking partnerships with local service clubs to increase awareness
  • Participating in national and international organizations to expand connections

State/National Priorities for Systems Change

Ensure Continuity and Equitable Resourcing Across States, Territories

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, your state chapter of Hands & Voices)

Deepen Reach and Impact of National Organizations to Local Level

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  

Network Nationally to Expand Organizational Support

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

Establish Written Collaborative Agreements Across National Partner Organizations

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