AAC for 22q11 Deletion Syndrome: AAC Assessment Considerations
AAC for 22q11 deletion syndrome is not a single device choice or a standard plan. Start with the person: how they communicate now, what they want to say, which access methods work, and what support keeps communication available. The diagnosis alone cannot decide whether someone needs AAC or which tools may fit.
What does AAC for 22q11 deletion syndrome mean?
Augmentative and alternative communication (AAC) supplements speech or offers another way to express a message. It can include gestures, signs, pictures, books, and speech-generating devices (SGDs). A person may use more than one method. The choice may change with the setting, partner, or topic.
Some people use AAC with speech. Others use it as a main way to communicate. The point is access to real messages: choices, ideas, questions, and "no." It does not replace the person's identity.
22q11 deletion syndrome is a genetic diagnosis, not one communication profile. Look at what the person says now and wants to say. Do not assume a vocabulary or a device from the label.
Why should the diagnosis not determine the AAC plan?
People with the same diagnosis can communicate very differently. Someone may do well at home and struggle in a noisy class. Another may speak in some places and choose AAC in others.
Ask what helps and what gets in the way. Look at real activities, tools, goals, and partners. A diagnosis is background. It does not replace observation or the person's own view.
Avoid claims such as "everyone with this syndrome needs a device." Keep observations, family reports, and interpretations separate. A picture selection is an observation. "The setting may be too demanding" is a question to test, not a conclusion.
What communication questions are useful at the start?
Begin with everyday life, not a product catalogue. Collect examples of communication that already works, moments of misunderstanding, and times the person has something to say but no reliable way to express it.
How does the person greet, refuse, request, comment, and share information?
Which methods work with familiar partners, and what changes with new people?
What would they like to say that is hard to express now?
Which activities matter at home, school, work, and with friends?
How do they show "yes," "no," "stop," "help," or "I need a break"?
Does communication change with fatigue, stress, health, or pace?
These prompts do not prescribe a device. Make notes specific. Instead of "doesn't communicate at lunch," note the noise, whether the usual method was available, and how long partners waited. Details can point to a support. They do not assign fault.
A person who does not answer on cue may still have something to say in a relaxed activity. Try a comment, a pause, and room to start. Notice whether a choice is genuine or only a request to confirm what a partner already picked.
How can the person's goals guide evaluation?
Goals make evaluation practical. A goal might be a turn in a family conversation, a comment in class, or a way to direct an activity. It should reflect what the person wants.
Be concrete. "I want to tell my teacher when I have an idea" is more useful than "I need more language." The team can then look at messages, access, and partner support. Several goals do not all need one device.
Do not limit goals to requesting items. People also comment, ask questions, protest, and connect. Name who, where, and what. "During a weekly game, choose a move and ask for a pause" is easier to observe than "participate more.
Goals can also cover control. A person may want to ask a partner to wait, correct a message, or refuse help. Ask how they prefer to say that. Partners need to recognize and respect the response.
Who should take part in an AAC evaluation?
A speech-language pathologist (SLP) leads the communication evaluation and AAC planning. The team may also include the user, family, educators, other therapists, and an assistive-technology specialist. Clarify who does each part.
The person who will use AAC guides the work. Their signals, choices, and experience matter. Lack of a spoken answer is not lack of an opinion. Family notes help, but they do not replace the person's preferences or the SLP's evaluation.
A specialist can show features and support a trial. Product information is not a clinical recommendation. Forbes AAC offers specialists and products. The SLP and the user should still guide the evaluation.
What should the SLP explore during an assessment?
An AAC assessment is more than a test of tapping a screen. It looks at communication, access, language, and the support a system needs. It may include observation, conversation, and a trial.
Watch partners who know the person and partners who do not. If only one person can read a few signals, look for ways to make messages clearer. Do not judge understanding from speech alone. Include names, favorite topics, and social language, not only requests adults chose.
Access is how a person selects a message: touch, a switch, head movement, eye gaze, or another method. What is available depends on the device. Watch it in a real setting, not only a short demo. Also ask who charges and positions the system, and what the person can use if it is down.
How should the team think about communication access?
Access is individual. One person may touch a large target but not a small one. Another may do better with a switch or eye gaze. The goal is a dependable way to communicate, not the most familiar or advanced method.
Compare methods in real activities. For eye gaze, discuss targets, position, and light. For a switch, discuss placement and timing. For touch, consider target size and screen position. These are questions for the evaluating professional, not a verdict that one method fits.
Device families differ. ProSlate devices use iOS. WinSlate devices use Windows. Access and software fit are model-specific. A listed option does not prove it suits a person. Confirm the exact configuration, and watch it over time. Noise, seating, and where the partner stands can matter as much as the device.
How can a device trial help?
A trial can show whether a person can reach the controls and say messages they care about in a real activity. It does not prove a device works for a diagnosis. A trial is not free ownership and not a guaranteed purchase.
The pathways stay separate. A licensed SLP may borrow equipment for sessions, usually up to four weeks, and the device stays with the SLP. A home trial starts only after that SLP checks insurance and coverage is confirmed. The 24 to 48 hour code timing starts then. It is not a shipping promise. Confirm the current terms first.
Eligible SLPs or facilities that already have an iPad may request a separate evaluation kit. That conditional loan can include SoundPOD, FlexABLE, and limited keyguards. It is not a dedicated speech-generating device, and it is not a family home trial. Ask which pathway matches the question you need answered.
What should a useful trial plan include?
Agree on the question before the trial. The plan should create chances to see communication, not predict a purchase.
Choose routines the person values.
Include familiar and less familiar partners, with consent.
Note access, messages, and how partners respond.
Notice whether the person approaches, avoids, or rejects the tool.
Review position, words, timing, and the room before a conclusion.
Share notes with the SLP and name the next question.
Write what happened. "The screen sat at a hard angle" is more useful than "the device failed." Review easy moments and hard ones. Set a date to say what you learned and what is still unclear.
How can partners support communication?
Give the person time. Respond to the message, not only to how it was produced. Where it fits, model a selection while you speak so the system is part of ordinary talk, not a test.
Offer real chances to communicate. Comment and pause. Offer a meaningful choice. Do not turn every moment into a quiz. If a message is unclear, say what you understood and give a way to correct you. The person should be able to say no or ask for help.
Keep a few shared habits: have the system ready, know the position, wait, and keep a backup. Honor gestures, signs, and speech too. Families do not need to become full-time evaluators. A short note can help. Daily life should stay a relationship.
What should the team ask about software, funding, and settings?
Ask what one configuration can and cannot do. ProSlate materials describe most compatible AAC apps, not every app. Some WinSlate email, text, and Skype functions need a separate Feature Unlock Key. Confirm the model, access, apps, and accessories.
CoughDrop, CoreWord, and Spark are Forbes AAC software options. Spark runs on WinSlate and is powered by MindExpress. A free clinician download is not a free user license. An app on one platform may not exist on the other. A trial may not match a funded device.
Coverage depends on the payer, state, paperwork, and configuration. A benefits check is not a promise. Schools and loan libraries use a sales-assisted quote, not public checkout. Some dedicated devices limit features that are not covered. Do not expect every app on a funded device, and do not rely on a price or an approval date.
Plan where the system will be stored, mounted, and charged. Confirm that a mount or keyguard fits that model. Keep a backup the person can use, such as a board or gestures, while a device charges. The backup helps. It does not replace the preferred system.
How can a team compare options without rushing?
Use the same everyday questions for each option. Ask what the person can express, how they access it, how much help they need, and what they think of the experience.
Question to compare | What to observe | Follow-up discussion |
Message range | Can the person request, comment, refuse, and ask? | Which messages matter, and what is missing? |
Access and comfort | Can selections stay comfortable over time? | Would position, size, or timing need review? |
Daily availability | Can the system be present in valued routines? | Who helps with setup, charging, and backup? |
Partner support | Do partners recognize and respond? | What short practice would help? |
The table is not a rating scale and does not pick a product. A person may speak at home and use AAC in a noisy group. Describe the pace, the noise, and the wait time before you decide what to try. Speech and AAC can be used together. Do not require someone to stop speaking, and do not withhold AAC because the person sometimes speaks.
Bring a few examples to the next conversation: one time communication worked, one time it broke down, and one message the person wants to say more easily. An SLP can turn those examples into questions about access and support. A specialist can then show only the configurations that match those questions. For more general reading, the Forbes AAC article library sits alongside, not instead of, that evaluation.
Frequently asked questions
Does everyone with 22q11 deletion syndrome need AAC?
No. A diagnosis does not decide who needs AAC or which approach fits. Communication, goals, access, and daily life should guide the talk with an SLP and the team.
Can a person use AAC and speech together?
Yes. AAC can add to speech or offer another way to communicate. A person may choose different methods at different times. Respect that choice.
Does a device trial mean the equipment is free?
No. A clinician loan stays with the SLP. A home trial starts only after the user's SLP confirms coverage. Confirm the current terms. A trial is not coverage and not a purchase.
Will insurance cover a particular AAC device?
It depends on the payer, the paperwork, and the configuration. A benefits check does not guarantee payment. The payer makes that decision.
Who can help compare access methods?
An SLP can evaluate communication. A specialist can show device features. The person and their partners can describe daily life. For more reading, visit the Forbes AAC article library. Product pages do not replace an SLP evaluation.
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