Deafblindness: An Overview and Resources

Understanding Deafblindness

Deafblindness is often misunderstood. Rather than a specific diagnosis from a medical team, deafblindness is a level of combined hearing and vision impairment that impacts a person’s ability to learn and navigate their environment differently than the challenges experienced by someone who is only blind (or low vision) or only deaf (or hard of hearing).  Additionally, there is wide diversity in deafblindness, from low vision or cortical vision impairment (CVI) to blind and from mildly hard of hearing or auditory processing issues to profoundly deaf. All are considered deafblindness, and there are state deafblind programs in every state to support qualifying children and their families. 

Resources for Families

As a parent of a child identified as deafblind, it’s normal to feel overwhelmed and uncertain. Knowing that resources are available to support you and your child on this journey is essential.

First and foremost, seek a team of professionals who can provide guidance and support. The team may include a pediatrician, audiologist, ophthalmologist, neuro-ophthalmologist, a Teacher of Students with Visual Impairments (TVI), Orientation and Mobility (O&M) specialist, Teacher of the Deaf (ToD), and/or early intervention specialist and school-based team members, including your child’s Occupational Therapist, Speech and Language Pathologist, or Physical Therapist. These professionals can help you understand your child’s needs, advise on communication strategies, and recommend resources and services in your area. These organizations offer a range of resources and support for parents of children identified as deafblind, including information on education, assistive technology, advocacy, and more. 

It’s also essential to connect with other families who have children who are deafblind. These organizations can provide meaningful resources and support unique to your child and your family, a sense of community, and a space to learn from other families. 

1. National Center on Deaf-Blindness (NCDB)– an organization that supports state deafblind programs and offers a range of resources and services to support the education and well-being of children who are deafblind. Resources include research and development, teaching practices, an assessment tool, interventions for children who are deafblind, and a section specifically for families. Services include training, consulting, a national registry, and training opportunities. 
2. Your state deafblind program –a state-specific organization that can support your family and child from birth to 21-years of age. Your state deafblind program can help you understand deafblindness and your child’s needs and provide consultation with your child’s school team. 
3. National Family Association for Deaf-Blind (NFADB) -an organization with a mission to empower and support families, promote awareness, and advocate for the needs and interests of individuals who are deafblind. They offer various resources, including a family support network, education and training, and advocacy efforts at the national level.
4. National Organization of Rare Disease (NORD)—an organization with information on rare genetic disorders identified as being at risk for deafblindness, such as CHARGE syndrome, Usher syndrome, and peroxisomal disorders. Other prenatal and postnatal complications are also at risk of your child becoming dual sensory impaired. NORD can help you find community support—your key to connecting with others.
5. Perkins School for the Blind – a provider of education and services for individuals who are blind or low vision, including those who are deafblind. Their services are individualized and focused on meeting the unique needs of each child, with an emphasis on communication, independence, and self-advocacy. This school also has a research and training center that focuses on advancing knowledge and best practices in the field of blindness/low vision and deafblindness. Perkins School for the Blind is dedicated to empowering children who are deafblind and helping them reach their full potential.
6. Helen Keller National Center for Deaf-Blind Youths and Adults – an organization that provides a wide range of services and programs for young adults and adults who are deaflblind, including assessment and training services, vocational rehabilitation, and community outreach. They also offer a National Training Team program, where individuals who are deafblind can receive on-site training and support from HKNC trainers in their home communities. The organization strives to create a supportive and inclusive community for individuals who are deafblind, with a focus on fostering independence, self-determination, and empowerment.

Supporting Your Child’s Learning 

You can help your child learn by focusing on communication and creating a supportive environment. This may include using tactile cues, such as touch, to communicate with your child and providing a quiet and structured environment to help minimize sensory overload. Consider learning American Sign Language (ASL) and braille to better communicate with your child. Consider the following:

1. Develop a tactile communication system. For children who are deafblind, tactile communication can be very effective. This can involve using tactile signs, tactile symbols, or other forms of touch-based communication.
2. Encourage exploration. Children who are deafblind often have limited access to the world around them. Encouraging exploration through sensory activities like feeling different textures or experiencing different smells can be an effective way to help your child learn and engage with the world.
3. Use visual aids. Your child may benefit from using visual aids such as picture schedules or visual timers that can help your child understand routines and transitions.
4. Practice turn-taking. Taking turns during communication activities can help your child develop critical social skills. This can be as simple as taking turns tapping a rhythm on a table or passing an object back and forth.
5. Seek out resources and support. Many organizations and support groups are available for parents of children who are deafblind. These groups can provide valuable information, resources, and support to help you better understand and support your child’s unique needs.
6. Try Active Learning. Active Learning Space is a collaboration between Penrickton Center for the Blind Children, Texas School for the Blind and Visually Impaired, and Perkins School for the Blind that provides resources, ideas, and training for Active Learning, the educational approach developed by Dr. Lilli Nielson.

Instructional Supports and Programs

Many instructional supports and programs are available to support children who are deafblind. Work with your child’s medical team and educators to identify the resources and services best suited to your child’s needs. Instructional supports and programs may include:

1. Early Intervention Services: Services may involve physical therapy, occupational therapy, speech therapy, a developmental therapist, a Teacher of Students with Visual Impairments, sensory integration therapy, orientation and mobility, communication strategies, assistive technology, and other services provided in the home or community settings.
2. Braille and Sign Language Instruction: Depending on the child’s level of vision and hearing, instruction in braille and sign language may be necessary for effective communication. Tactile signing may be another communication option. The child would place their hands over the hand of the person signing to understand what is being communicated through touch and movement. It is key to begin understanding your child’s need for multi-model communication to allow them to guide you and professionals in their preferences and needs to express themselves. This will allow for growth in multiple approaches to communication. 
3. Educational Programs: Schools for the deafblind may provide specialized instruction to help children develop communication, cognitive, and life skills. They may also offer specialized services such as speech and language, occupational, and physical therapy. Explore school options and understand what your child has a right to under IDEA to determine the best learning environment for your child.
4. Assistive Technology: Various devices and equipment can be used to help children who are deafblind, including hearing aids, cochlear implants, tactile communication devices, screen readers, and communication apps. 
5. Sensory Integration Therapy: This therapy is designed to help children integrate information from their senses to develop a more thorough understanding of their environment. Therapy may include playing with different textures, working with tactile puzzles, and engaging in sensory-motor activities. You can also seek sensory-integration support through a developmental disability specialist, OT, PT, and TVI. 

You are Not Alone

Specialized services for children who are deafblind are tailored to meet the unique needs of each child and family. As the parent, you are your child’s first teacher and expert in knowing them better than anyone else. These resources, supports, and services can help your child overcome challenges, develop communication and life skills, and achieve their full potential. Remember, as a parent of a child who is deafblind, you are not alone. Connecting with other families through organizations will be invaluable to you and your child. Here are some suggestions.  

• Ask your state deafblind program what family activities and family groups they offer.
• Check etiology specific organizations/foundations for parent support groups such as CHARGE Foundation, Usher Coalition, NORD, Trisomy 18, etc.
• If your child has cortical vision impairment, you can join the Lighthouse Guild’s tele-support group.
• Family-to-Family Communities (F2FC) is a collaborative group of state deafblind programs that provide families a safe place to feel supported and encouraged by other families whose child is deafblind.

With the right resources and support, you can help your child thrive.