A new study co-authored by MaryAnn Demchak, Ph.D. BCBA-D, professor of special education at the University of Nevada, Reno, and Brianna Grumstrup, Ph.D., assistant professor of special education at the University of Maine, Farmington, and an alumna of the University of Nevada, Reno's doctoral program in special education, explores a rarely studied topic of how parents foster self-determination in children with congenital deafblindness (DB) and additional disabilities. Published in the British Journal of Visual Impairment, the study sheds light on the pivotal role parents play in shaping independence and autonomy for their children from early childhood through young adulthood.
Congenital deafblindness is a complex condition marked by simultaneous hearing and vision loss, often coupled with other disabilities such as intellectual or physical impairments. As a result, individuals with DB face significant barriers to communication, social interaction and independence, which are factors essential to self-determination. While self-determination is a well-established goal in special education, research in this area has historically overlooked individuals with dual sensory impairments and complex support needs.
“Congenital deafblindness with additional disabilities results in unique communication and learning needs for children,” Demchak said. “Parents are key in implementing strategies to help their children with deafblindness to build their skills, including self-determination skills.”
The study included in-depth interviews with eight parents of young adults (ages 18–29) with congenital DB and co-occurring disabilities. The researchers analyzed the data using a modified van Kaam method and identified seven key themes:
- Impact of Sensory Impairments: Parents discussed how hearing and vision impairments shaped every aspect of their child's development and daily life.
- Importance of Communication: Developing and recognizing unique, often nonverbal, methods of communication was critical in helping children express preferences and build relationships.
- Accommodations and Adaptations: From early interventions to current supports, parents emphasized the importance of customized tools and strategies, such as assistive devices and modified routines to support independence.
- Helpful Therapies: Collaborating with occupational, physical and speech therapists was seen as essential for building foundational skills for autonomy.
- Parental Flexibility and Honoring Preferences: Responding to children's unique needs and interests, such as adapting mealtimes or preferred activities.
- Continued Supports: Most children in the study continued to require significant support into adulthood, yet they also demonstrated growth in volitional behavior and decision-making.
- Trusting Relationships: Establishing secure, trusting connections, especially with family members, helped the individuals feel safe enough to explore, make choices and interact with their environment.
"There’s so little research on self-determination in individuals with deafblindness (and what it means for them),” Grumstrup noted. “I think our findings offer valuable insight into how families can support it over time. The families we interviewed gave us so much of their time and details about their lives. I'm so grateful we can tell the stories of this very unique group."
The study builds on the self-determination theory, emphasizing the importance of autonomy, competence and relatedness. While these constructs are universal, the study underscores that they may manifest differently for individuals with complex needs. For example, autonomy may involve supported decision-making rather than full independence, and relatedness may be expressed through touch or presence rather than verbal exchange.
“Parenting strategies and home opportunities are essential in building skills to facilitate maximum self-determination for children with congenital deafblindness and co-occurring disabilities,” Demchak explained. “It is also important for teachers of these children to address self-determination in the school setting to further enhance this skill area for these children.”
Ultimately, the study challenges traditional definitions of self-determination by recognizing that individuals with congenital DB may express autonomy and agency in less conventional but no less meaningful ways. With the right supports, accommodations and trusting relationships, self-determined behavior is possible, even for those with the most significant disabilities.
The findings have practical implications for educators, therapists and service providers. Professionals working with children with DB should partner closely with families to understand each child's communication style and preferences. They should also design flexible environments that support autonomy through individualized accommodations and consistent routines.
