Every child who has both hearing and vision loss, or deafblindness, is completely unique. Each has some combination of vision and hearing loss where what they can see and hear is reduced, distorted, or missing entirely. Every child who is deafblind requires individualized services to help them access, understand, and interact with the world. Timely identification of combined hearing and vision loss is essential so they can receive instruction and accommodations designed to address their unique needs and abilities.
Deafblindness is relatively rare: According to the latest National Deafblind Child Count Report (2023), about 10,500 children in the U.S., ages birth to 21, have been identified. But for many more children, deafblindness remains undetected, preventing them from receiving critical services that are essential for learning, communication, and development. That is why increasing identification of children who are deafblind is an important priority for the National Center on Deafblindness (NCDB) and state deafblind projects across the country.
Understanding Deafblindness
NCDB has a number of publications on identification and referral that families can use for their own information as well as to share with their child’s service providers and schools. For example, An Overview of Deafblindness (www.nationaldb.org/media/doc/An_Overview_of_Deafblindess_FactsheetJUL2022_a_1.pdf) provides parents, school administrators, and educators with a brief yet comprehensive understanding of
- What deafblindness is
- What causes deafblindness
- What’s different about how children who are deafblind learn and communicate
The educational needs of a child who is deafblind involve unique approaches that are often different from those designed for children with only vision loss or only hearing loss. The Overview lists many of the educational strategies, services, and supports that are available to help a child who is deafblind reach their full potential.
The Role of School Administrators and Other Decision Makers
Because deafblindness is a low-incidence disability, many people, including school administrators and educators, are unfamiliar with deafblindness, how it is identified, and how it impacts a child’s learning, communication, and social and emotional well-being. An important publication, Identification of Children With Deaf-Blindness: Resources for School Administrators (www.nationaldb.org/media/doc/Identification_for_Administrators_a.pdf), offers a wealth of information on these topics. Administrators and other decision makers can use this resource to help ensure that children with deafblindness are identified, referred, and receive the appropriate services they deserve.
Quick Facts on Deafblindness
- Combined vision and hearing loss, or deafblindness, is a rare condition that limits access to both auditory and visual information.
- Only about 1% of children with deafblindness have both profound hearing loss and total blindness, while 99% have some usable hearing or vision.
- About 85% of children who are deafblind have additional communication, physical, medical, and/or cognitive disabilities.
- Having multiple disabilities or complex healthcare needs often keeps deafblindness from being identified in children, a situation that limits their access to appropriate interventions.
– Source: Identification of Children with Deaf-Blindness: Resources for School Administrators
The Importance of Being Counted
Resources for School Administrators (www.nationaldb.org/media/doc/ Identification_for_Administrators_a.pdf) also discusses the importance of the annual National Child Count of Children and Youth who are Deafblind (www.nationaldb.org/info-center/national-child-count). For the child count, schools and educators throughout the U.S. report the number and various characteristics of children who are deafblind in their schools and other agencies to their state’s deafblind project. NCDB compiles and analyzes the data, reporting the findings each year in the National Deafblind Child Count Report. No personally identifiable information is shared with NCDB or included in the report.
The child count is critical because it helps guide the provision of services to support children who are deafblind and their families. Because school administrators may not be aware of the annual child count and the reasons for ensuring its accuracy, it’s important for them to have this information.
Children Who Have Significant Cognitive Disabilities
A number of children who are deafblind also have significant cognitive disabilities. Until recently, little data was available about this complex population of students. In 2021, a study examined the critical importance of timely identification of children who had dual sensory loss and significant cognitive disabilities. The study, by NCDB and Accessible Teaching, Learning, and Assessment Systems (ATLAS), found that students with suspected dual sensory loss had lower scores on communication, engagement in instruction, and academic skills than their peers who had significant cognitive disabilities but no dual sensory loss.
Because assessment and instruction typically rely on a student’s ability to access information via hearing and/or vision, this was likely because they had not been appropriately assessed and were not receiving adequate access to auditory and visual information. The report discusses barriers to the identification of dual sensory loss and provides recommendations for assessment.
To learn more about the report and what the findings mean for families and educators, see Assessing Dual Sensory Loss in Students With Significant Cognitive Disabilities (www.nationaldb.org/media/doc/NCDB-ATLAS_Brief3_a.pdf).
Recommendations for Assessing Dual Sensory Loss
- Always evaluate students with a known loss in one area (vision or hearing) for a loss in the other.
- Ensure that whoever is testing hearing and vision understands how a student receptively and expressively communicates as well as their other needs (e.g., hand use, positioning).
- If communication is dependent on a knowledgeable partner, include that person in the assessment process.
- Train educators/IEP teams to consider whether behavior challenges and lack of instructional engagement might be due to inadequate sensory access.
- Repeat evaluations regularly to monitor for changes in hearing and vision.
– Source: Assessing Dual Sensory Loss in Students With Significant Cognitive Disabilities
Understanding and Diagnosing Usher Syndrome
Usher syndrome is the leading genetic cause of deafblindness in the U.S. Children with Usher are typically born deaf or hard of hearing and over time experience night blindness and progressive vision loss due to retinitis pigmentosa. A delay in diagnosis can seriously impact a child's language development, the quality of their educational experiences, and the child and family’s ability to make informed choices about the future.
Identification of Usher Syndrome: Information and Resources (www.nationaldb.org/national-initiatives/early/identification-usher-syndrome) offers a collection of materials about Usher syndrome for families, healthcare providers, and educators. Included are resources on the different types and characteristics of Usher as well as diagnostic and genetic tests. Families can use the information in conversations with their child's medical and educational providers to help them better understand Usher syndrome.
Your State Deafblind Project
If you are a family member of a child with deafblindness and have not yet contacted your state deafblind project (www.nationaldb.org/state-deaf-blind-projects), you should do so as soon as possible. The types of services offered vary from state to state, but typically include resources, guidance, and annual workshops or other events to connect families with one another. Most state deafblind projects include a staff member in the role of family engagement coordinator who works directly with families.
References
National Center on Deafblindness. (2023). 2022 National Deafblind Child Count Report. https://www.nationaldb.org/media/doc/2022_National_Deaf-Blind_Child_Count_Report_.pdf
About the National Center on Deafblindness:
NCDB’s primary mission is to support state deafblind projects in their efforts to help early intervention providers, educators, other service providers, and families learn about deafblindness and the skills needed to help children with deafblindness learn, access the general education curriculum, and successfully transition to adult life. You’ll find a wealth of information about deafblindness in children and youth on our website at nationaldb.org. Make sure to visit the For Families (www.nationaldb.org/for-families) section of the website, which provides helpful resources and materials designed specifically for families.
If you or someone you know has a child with known or suspected deafblindness, make sure to contact your state’s deafblind project (www.nationaldb.org/state-deaf-blind-projects). They can help you find and navigate services in your state.
Disclaimer: The contents of this article were developed under a grant from the U.S. Department of Education, #H326T230030. However, those contents do not necessarily represent the policy of the U.S. Department of Education, and you should not assume endorsement by the Federal Government. Project Officer, Rebecca Sheffield.
Read the article here.