National Center on Deaf-Blindness: Family Leadership, Engagement, and Empowerment

Child with hearing aids playfully gives eyeglasses to an adult

Families are the experts in knowing their child, which should positively impact the decisions made for a child who is deafblind. Children who are deafblind have specific needs and considerations that are “compoundingly complex.” Families with a child who is deafblind will go through many stages of emotions and have different needs as they support and raise their child. Providers and other supports can meet their unique needs as families become empowered to share their voices and experiences.

When families are ready to seek support and community, state deafblind programs and the National Center on Deaf-Blindness are available. Here, families share resources and strategies, promoting equity and inclusiveness while respecting individual families’ cultures, languages, beliefs, values, and priorities. Families who find support and connection with other families can lessen the feeling of being isolated, improve mental and emotional wellness, learn from each other, and become healthier individuals for their child and the child’s team.


Hear the story of a family whose child is deafblind. Tiara will share how she uses her story to reflect on her journey raising her son, who is deafblind. Her strength and story will empower other families to share their stories.

Explore National Center on Deaf-Blindness: Family Leadership, Family Engagement, and Family Empowerment to gain insights from Jana Villemez. She discusses her experiences as the Family Engagement Initiative Lead at the National Center on Deaf-Blindness and her previous role as Family Consultant for the Arkansas state deafblind program. Jana also offers valuable information to families and providers, empowering them to advocate for their children and others.