Parent support for a deafblind child

Connect with deafblind-specific support

Why hearing and vision need to be considered together

A child may use some sight, some hearing, touch, movement or a combination. What is accessible can vary with the activity and environment. Support designed only around hearing, or only around vision, may miss how the two interact. APH FamilyConnect guidance on deafblindness

For example, a spoken instruction may be hard to hear, while the accompanying picture is also hard to see. Repeating the instruction or making the picture larger may not solve the problem. Ask how the information can be presented in a way your child can access.

You may see “deafblind,” “deaf-blind” or “DeafBlind.” Families and individuals use different terms. Ask what language a person prefers, and focus on how they get information, rather than treating one label as the only right word.

Ask about early intervention or a school evaluation

Make communication an everyday priority

Start by noticing how your child already communicates. That may include movements, gestures, facial expressions, sounds, signs, objects or other responses. Write down what you notice without assuming you have interpreted every signal correctly.

Ask someone with deafblind expertise to help you understand and build on those responses:

• How does my child show interest, refusal, discomfort or that they want more?
• How can we let my child know who is here and what will happen next?
• What information is available through hearing, vision or touch in this routine?
• How much time should we allow for a response?
• What should family members, childcare staff and school staff do consistently?

There is no single communication system that fits every child. Ask the team to demonstrate any suggested cues or tools and help you understand your child's response.

When touch is part of communication, protect the child's choice and control. Invite participation rather than forcing their hands through an activity. Ask a deafblind specialist to show you an appropriate approach for your child. Perkins guidance on hands and touch

Get the right people around the same questions

Your child's team may involve hearing and vision professionals, communication specialists, early intervention providers, teachers and orientation and mobility specialists. Ask whether one person can help coordinate information across the team.

Ask, “Who will help bring these findings together, and who should we contact when a support is not working?”

School or early intervention questions could include:

For a child with an IEP, IDEA requires the team to consider communication needs and whether assistive technology devices and services are needed. For a child who is deaf or hard of hearing, the team must consider language and communication needs, academic level and the full range of needs. That includes opportunities to communicate directly with peers and professionals, and to receive direct instruction, in the child's language and communication mode. IDEA special factors

For a child who is blind or visually impaired and has an IEP, the team must provide instruction in braille and the use of braille unless, after evaluating the child's reading and writing skills, needs, appropriate media and future braille needs, it determines that braille is not appropriate. Ask how that evaluation and decision are documented. IDEA braille provision

For general meeting preparation, use the IEP Meeting Checklist. It helps organize your questions and priorities.

What is an intervener

An intervener is a specially trained paraeducator who supports a deafblind student's access to information, communication and interaction under the educational team's direction. This is a specialized role, and it is not appropriate for every child. California School for the Blind explanation of intervener services

A useful question is:

In a 2018 guidance letter, the U.S. Department of Education's Office of Special Education Programs explained that when an IEP team determines an intervener is an appropriate related service required for a free appropriate public education, it must be included in the IEP and provided at public expense. That is an individualized determination, not an automatic service based on the diagnosis alone. OSEP letter on intervener services

Choose one routine to work on at home

Pick an ordinary moment, such as getting ready to go outside or sitting down for a snack. Ask the team to help you make the sequence understandable in a way your child can access.

Keep a short note about what you tried, how your child responded and what you want to ask next. These are observations to share, not a home test of hearing, vision or ability.

If visual materials are hard to access, a picture schedule is not automatically the answer. Ask about appropriate objects, tactile information, sound or other cues rather than assuming one format will fit.

The My Child at a Glance page offers an optional way to introduce strengths, communication and helpful supports to another adult. Record approaches already agreed with your child's team.

Family resources to explore

• National Family Association for DeafBlind is a national family organization offering family connections, advocacy and resources. Ask about options that fit your family.
• Find your parent center for education questions and local resource leads.
• APH FamilyConnect deafblindness resources offer a starting point for family information and further support.
• Perkins Resource Center includes specialist information for families and educators.
• Your state deafblind project can explain local connections and what its team offers. Ask your early intervention program, school or state education agency for the current contact.

You can also ask about meeting other families. Our guide to support groups for special needs parents explains additional ways to connect. Connecting with someone who understands the appointments, communication questions and small everyday discoveries can be useful even when their child's needs differ from yours.

Common parent concerns

Your next conversation can be simple

Keep that question and one everyday example. For help organizing a clinical visit, use Child Appointment Prep & Visit Summary. For broader first-step navigation, visit Start Here.