AAC for Locked-In Syndrome: Communication Access Considerations

AAC for locked-in syndrome is not a single device recommendation. A person may communicate through eye movement, a small intentional movement, partner-assisted methods, or a combination, and the most useful approach depends on that person's goals, preferences, abilities, setting, and comfort. Families and clinicians can explore options together, treating each access method as a possibility to evaluate rather than an assumption based on a diagnosis.

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What should communication access make possible?

Start with the messages the person wants to communicate, not with a device feature. The person may want to make choices, ask for help, share opinions, tell a story, take part in care conversations, or connect socially. Those goals can differ from one person to another. Some are immediate and practical; others involve longer conversations, humor, relationships, or participation in decisions. All are legitimate communication goals.

Ask the person directly whenever possible. Use the person's established yes-or-no signals or another communication method they already trust. Do not assume that a diagnosis, a particular movement, or difficulty speaking reveals what the person understands or wants to say. If a response is uncertain, take time to check it instead of treating a guess as an answer. A reliable way to ask, wait, confirm, and correct can be as important as the equipment being considered.

Make the goals specific enough to observe. “Communicate more” is a useful broad aim, but an evaluation becomes easier to plan when the team can describe actual tasks. For example, the person might want to choose between two activities, answer a question from a visitor, compose a new message, or call attention to an urgent need. The team can then ask what access method would let the person complete that task with the least avoidable effort and the most control.

Consider communication partners and places, too. A method that works with a familiar partner in a quiet room may need adjustments when a new person joins, the room is brighter, or the person is positioned differently. List where communication matters: bed, wheelchair, living room, appointments, school, work, or community activities. Then identify who is present in each place and what help, positioning, or equipment is usually available. This is not a test the person must pass; it is a map of the conditions an access plan should address.

It can be helpful to separate the message from the way the message is selected. Someone may communicate by spelling, choosing symbols, selecting stored phrases, or combining these. Access might involve eye gaze, a switch, touch, head movement, partner-assisted scanning, or another individualized approach. A person's access method and communication system are related, but they are not the same decision. The team should consider both the way the person selects and the words, symbols, or vocabulary that let them express themselves.

How can an assessment start with the person?

An individualized assessment is a process of learning, not a quick device demonstration. It brings together the person's preferences and communication goals with observations from family members, the speech-language pathologist (SLP), and other assistive-technology professionals as appropriate. Each person brings a different kind of information: the user knows what feels comfortable and meaningful; familiar partners know routines and established signals; clinicians can help structure trials and document access observations.

Begin by asking the person how they prefer to participate in the assessment. That might mean using an existing signal, allowing extra time to respond, taking breaks, or choosing which tasks to explore first. Ask how the person wants a partner to check a message. If they want to stop or change an activity, plan a clear signal for that as well. The assessment should not make communication contingent on the person tolerating a long session or a particular setup.

Gather a short description of current communication. Include any reliable signals, ways the person indicates yes and no, how they show that a message needs correction, and methods already used with familiar partners. If those signals are not fully clear, label them as uncertain and work with the person and their team to clarify them. Avoid turning a tentative interpretation into a fixed instruction that every partner follows without checking.

Next, list the tasks, settings, and partners that matter. A simple planning sheet can have one row for each task and columns for location, communication partner, response time needed, current method, and what makes the task difficult. For instance, “choose a television program” may occur in a familiar room with a family member, while “ask a question at an appointment” may involve an unfamiliar partner and a different position. The contrast helps the team plan realistic trials instead of testing only in one convenient situation.

Finally, record the conditions around each observation. Note posture and device position, lighting where relevant, fatigue as reported or observed, the time of day, interruptions, and how much partner assistance was needed. These notes are not a score of the person. They help explain why a method may feel easier in one situation than another and what may need to change before drawing conclusions.

When might eye gaze be worth exploring?

Eye-gaze systems use a camera or sensor to estimate where a person is looking, so selections on a screen can be made with the eyes. This may be one option to explore when the person can direct gaze toward targets. A brief demonstration, however, cannot establish that eye gaze will be comfortable or useful across daily communication. The full setup and the user's experience matter.

Positioning is a practical first question. Can the display be placed where the person can see it comfortably from the usual bed or chair? Does that position remain stable when the person's posture changes? Is there room for the screen, mount, and any other equipment the person uses? The evaluator can note how long it takes to arrange the device and whether the person or a partner can reproduce the position later. If the setup works only with a complicated arrangement that is rarely available, that is important information for the plan.

Consider the visual environment and the interface together. Lighting, glare, screen angle, target size, spacing, and the way a selection is confirmed can all affect a trial. Ask whether the person can see the choices clearly and understands what will happen after a selection. The team might try a different layout or target size rather than deciding too quickly that eye gaze itself is unsuitable. Changes should be made one at a time when possible, so the team can tell which adjustment helped.

Calibration and selection timing are other things to observe. The person may need a comfortable way to select without holding their gaze longer than they prefer. The team can try different selection settings, provide clear feedback, and include meaningful communication tasks rather than only asking the person to look at targets. A person who can select a large demonstration target still needs a chance to test the setup for choices, messages, and corrections that matter to them.

Observe comfort and consistency over more than one brief activity. Ask the person how the method feels. Note whether selections become harder after time, whether a break changes the experience, and whether the person can pause or stop. Do not frame fatigue or variable access as a lack of interest or cooperation. The goal is to understand the conditions that support communication and to plan around the person's experience.

Eye gaze is one option, not the only possible way to communicate. It may be appropriate to explore a backup for times when gaze access is tiring, a device is not positioned, or the system is unavailable. Forbes AAC provides eye-gaze settings and help resources that can help a team prepare product-specific questions. Device and configuration compatibility varies, so product information should accompany rather than replace individualized evaluation.

When might switch access be worth exploring?

Switch access lets a person make a selection through an intentional movement that activates a switch. Depending on the person and the equipment being evaluated, a switch may be placed for movement of a finger, hand, head, or another body area. With scanning, the device presents choices in sequence, and the person activates the switch when the desired choice is reached. The exact access arrangement should be explored with the person and the evaluation team.

The presence of a movement alone does not tell the team whether a switch will be useful. Ask whether the movement is intentional, repeatable enough for the task, and comfortable in the person's regular position. Consider whether the person can reach or activate the switch without strain and whether its placement can be repeated by partners. The team might compare different placements or activation requirements, changing one factor at a time and asking the person which feels better.

Scanning has a pace that needs to work for the user. If choices move too quickly, a person may not have time to select; if the pace is too slow, creating a message may take longer than the person wants. An evaluator can test timing with several kinds of tasks: selecting a preferred item, correcting an incorrect option, and building a less predictable message. A fast selection in a familiar sequence does not necessarily show that the same timing will work for a new message.

Plan for rejection, correction, and stopping. A switch method should not leave the person stuck with an unintended selection. Ask how the person can say “no,” undo a choice, pause scanning, or restart. The team can practice a short exchange in which the partner deliberately presents an incorrect option and the person uses the agreed correction signal. This helps reveal whether both the access setup and the partner routine allow the person to retain control.

Try switch access in the positions and contexts where it may be used. A placement that is easy during an evaluation appointment may be difficult to recreate in a home routine. Note who positions the switch, how long setup takes, and whether the person can use it when a partner is not standing nearby. If a device is under consideration, check model-specific access features rather than assuming that every configuration supports the same switch arrangement. Forbes AAC's WinSlate series information describes device-family options; the evaluation team can help determine what needs to be verified for a particular configuration.

What is partner-assisted scanning, and how can it work?

Partner-assisted scanning is a way to present choices through an agreed sequence. A partner may say options aloud, show them visually, or present them another way that the person can access. The person signals when the desired option is presented. Their signal may be an eye movement, a small movement, or another response identified with them and their communication team.

Agree on the routine before relying on it. Decide how the partner will announce the start, what order the options will follow, how long to wait, and what counts as a selection. Make sure the person has a way to say “no,” “not that,” “pause,” or “start again.” The partner should confirm a selection in a way the person can accept or correct, rather than moving directly from a possibly ambiguous signal to an action.

A short, low-pressure practice can help partners learn the timing. For example, the person might choose between two familiar activities. The partner states the options one at a time, waits for the agreed signal, repeats the selected choice, and asks the person to confirm. Then the pair can try a different order or add an option if the person wants to continue. The point is not speed. It is to see whether the routine gives the person enough time and control.

Partners should not rush through options or guess when a signal is unclear. If the person does not signal, the partner can repeat the choice or ask whether they want a pause, according to the agreed routine. Silence is not automatically a “yes” or “no.” For an important message, repeat it neutrally and allow the person to confirm, reject, or revise it. If the partner is uncertain about what happened, say so plainly and invite another attempt instead of presenting an interpretation as certain.

Partner-assisted scanning can be considered when electronic access is unavailable, not yet evaluated, tiring in a particular moment, or difficult to position. It may also function as one part of a broader communication plan. It should not be treated as a reason to stop exploring another method the person wants to try. The person may prefer different methods for different tasks, partners, or conditions, and the plan can reflect those preferences.

A simple written partner guide can promote consistency. With the person's input, record the agreed signal, the sequence, the time to wait, the confirmation routine, and how to handle a missed or uncertain response. Keep the guide concise enough that a new partner can follow it. Review it with the person and update it if the signal or preferred pacing changes. A guide is a support for communication, not a substitute for asking the person directly.

How should the team compare access methods?

No access method is automatically right for every person with locked-in syndrome. A comparison should organize questions, not rank people or predict an outcome. The table below can help a family and evaluation team discuss what to observe. “Other access” can include touch, head movement, or an individualized method if the person and clinician consider it appropriate to explore.

Possibility to explore	Questions to ask during evaluation	Practical details to observe
Eye gaze	Can the person select targets and meaningful messages comfortably and consistently?	Position, screen angle, lighting, calibration, selection timing, breaks, and ability to correct
Switch access	Is there a movement the person can activate intentionally for the task?	Placement, activation, scanning pace, posture, setup time, and a way to pause or reject
Partner-assisted scanning	Can the person indicate a choice, rejection, or correction in an agreed routine?	Partner training, sequence, wait time, confirmation, privacy, and availability of a partner
Touch, head movement, or another method	Does the person want to explore it, and can it support meaningful communication?	Movement range, device placement, comfort, setup, consistency, and configuration compatibility

For each option, record what the person says about effort and comfort, what messages were attempted, what assistance was needed, and under which conditions the method worked or did not work. Avoid reducing the notes to “works” or “does not work.” A more useful note might say, “The person selected familiar choices in a seated position after the screen was repositioned; longer messages were not yet tested.” Such notes make the limits of an observation clear and help the next session build on it.

Compare options using the same meaningful task when possible. If one method is tested with familiar choices and another is tested with a long, unfamiliar message, the results do not answer a clean comparison question. The team can try equivalent tasks, allow adequate breaks, and ask the person whether they would like another attempt. This does not require turning communication into a contest. The purpose is to understand what the person finds useful and what each method makes possible.

It can also be reasonable to use more than one method. A person might use a device for some conversations and partner-assisted scanning when the device is unavailable. Another person might prefer one method for quick selections and another for composing messages. Avoid insisting that the person choose a single permanent access route before the team understands daily conditions. Document when each method is preferred and what partners should do when it is not available.

How can a device trial answer useful questions?

A trial should help the person and team learn about access in meaningful situations. It is not a guarantee that a device will work for everyone, and it does not promise a particular result. Before starting, agree on the question the trial is meant to answer. Examples include whether a display can be positioned comfortably, whether the person can select and correct messages using a proposed access method, or whether familiar partners can set up the system consistently.

Choose a small set of real communication tasks. Include one quick interaction, one task that requires a little more message creation, and, if the person wants, one task involving a less familiar partner or setting. A quick choice alone may not show how the person feels about composing a new thought. Conversely, a long composition task may not reveal whether the person can easily get a partner's attention. Use tasks the person recognizes and wants to attempt, rather than activities selected only because they are easy to measure.

Write down the trial conditions before the first session. Note the device or access method being explored, the seating or bed position, screen placement, any mounting support, who will help with setup, and where the trial will take place. If the person uses more than one position in daily life, plan which positions can be explored within the available evaluation. Keep an accessible description of the setup so that another partner can reproduce it as closely as possible.

Observe at more than one time or under more than one condition when the person is willing. A single session may be affected by an unfamiliar room, interruptions, or the time needed to learn a new setup. Give the person time to become familiar with the method, but do not keep going if they want a break or to stop. The team can distinguish “not yet tested,” “tested under these conditions,” and “the person chose not to continue.” Each is different information.

After each task, record what happened without overclaiming. Useful notes include the message attempted, whether the person selected or corrected it, how much prompting or physical setup was needed, how long the activity felt to the person, and their preference about doing it again. Include barriers such as a screen that was hard to reposition or a partner who had not learned the routine. The next session can address one barrier at a time.

• Agree on the purpose.

  Ask the person what they hope to learn, and phrase the trial question in everyday language.

• Choose meaningful messages.

  Include options and opportunities for spontaneous communication, not just repeated target selection.

• Plan position and access.

  Write down the setup and who will assist, while allowing the person to request changes.

• Include time for learning.

  Do not treat the first attempt as a final judgment. Offer breaks and respect a decision to stop.

• Capture the person's view.

  Record comfort, preferences, frustration, and what they would like changed alongside observations.

• Decide what happens next.

  Identify what to test again, what information remains missing, and who will coordinate it.

Forbes AAC describes distinct evaluation pathways. A licensed SLP may request equipment for evaluation sessions; that equipment stays with the SLP, and the standard loan term is up to four weeks, subject to availability and other conditions. A separate home-trial process is initiated by the user's SLP after an insurance benefits check and coverage confirmation. These paths have different steps and should not be treated as interchangeable. The device trial information can help an SLP and family identify questions to confirm about the current process.

Some SLPs or facilities may be eligible to apply for a conditional evaluation kit for use with an iPad they already have. That kit is not ownership of a speech-generating device. Eligibility and conditions apply; the evaluation kit information can help evaluators check whether that route is relevant. In every case, ask who is eligible, where equipment may be used, how long it may be available, and what must happen before the trial begins.

What makes partner support part of access?

A communication method is only useful in practice when the person can use it with the people and routines that matter. Partners can support access by approaching in a way the person can perceive, checking that the person is ready, and agreeing how to begin and end the exchange. They can make one point or ask one question at a time, then allow adequate response time. These steps help reduce pressure and make the person's role in the conversation clearer.

When a device is involved, partners may need to learn the setup routine. That can include placing the device where the person prefers it, checking that it remains stable, and knowing how to pause or return to the communication screen. Ask the person what they want the partner to do and what they do not want the partner to do. A partner should avoid taking over a selection simply because it would be faster to guess.

Partners can also support communication without making every interaction a lesson. Everyday opportunities might include choosing music, commenting on a visit, asking a question, or joining a familiar activity. Offer opportunities without requiring the person to perform on demand. If the person does not want to communicate at that moment, respect that preference. Communication practice should support the person's own purposes, not turn their day into a series of tests.

Agree on what to do when a message is unclear. A partner can say, “I am not sure I understood. Would you like me to repeat the choices?” or use another phrase the person prefers. Then wait for the response. Avoid filling silence with assumptions or asking several new questions before the person can respond. If communication is time-sensitive, have an agreed way for the person to request immediate assistance and ensure regular partners know the routine.

Privacy matters as well. Ask the person who may assist with communication and when they want a private exchange. A partner-assisted method may depend on another person being present; the team should discuss what the user wants when that partner is unavailable. This is one reason to consider more than one route when the person wants to do so. It is also a reminder that access planning includes the social conditions around a method, not only the mechanics of selection.

How can the plan include backup communication?

A backup is a planned alternative for situations when a preferred method is unavailable, difficult to position, or not comfortable at a particular moment. It does not mean the primary method has failed. People use different tools and communication routines in different settings, and an AAC plan can reflect that reality. The person should help decide which backup is acceptable and what it is for.

Choose backup methods that can preserve a meaningful degree of choice and correction. If partner-assisted scanning is part of the plan, specify the signal, pace, and confirmation steps. If the person has a device, decide who can help reposition or check it and what to do if it needs service. If a particular movement or signal is used, describe how the person indicates “yes,” “no,” “stop,” or “that is not what I meant.” Do not rely on a vague instruction such as “watch for cues” when partners need to know how to check a message.

Make the plan practical for each setting. At home, a familiar partner may be available; during an appointment or community activity, the person may need to explain the method to someone new. A brief introduction can describe how to address the person, how long to wait, and how to verify an answer. The person may wish to decide which parts of the guide can be shared and with whom.

Revisit the backup after the team has tried it. Ask the person whether it feels clear, respectful, and useful. Consider what happens if the first partner does not understand the signal, a message needs to be corrected, or the person wants a private conversation. If the plan depends on a particular partner or setup, note that limitation and discuss alternatives with the SLP or assistive-technology professional. A written plan should support real communication rather than create a false sense that every contingency is solved.

How should the team approach funding and support?

Assessment, trial, and purchase are separate steps. A family can learn about access needs before deciding whether to pursue a device, and a trial does not guarantee a particular funding decision. If a payer may be involved, coverage and documentation depend on that payer and the person's circumstances. A benefits check is not a promise of approval. The evaluating clinician can help identify what information may be needed and who is responsible for each part of the process.

Keep the communication question separate from the funding question. First document what the person wants to do and what access setup is being considered. Then ask which configuration is appropriate to evaluate and what documentation the payer or purchaser requires. Avoid assuming that a feature, app, or device configuration will be covered simply because it is available. Coverage requirements are payer-specific, and families should confirm details with the relevant funding contact.

Forbes AAC's Funding Portal information describes a payer-dependent documentation workflow. Direct-pay buyers, including schools and other institutions, use a sales-assisted quote process rather than public self-checkout; the order forms provide a starting point for that route. Neither process establishes a particular price, approval, or delivery date. Confirm current requirements with the appropriate specialist or funding contact.

Plan for support after a device is obtained. Ask who can help with setup, partner training, access-setting changes, positioning questions, and troubleshooting. Find out how to request service and which terms apply to the specific model and purchase date. Warranty terms, exclusions, repair limits, and support arrangements can vary, so a general statement should not replace confirmation of the applicable documents. Forbes AAC's support resources offer a place to begin when looking for service information.

Ongoing support should include the user's perspective. After the initial setup, ask whether the person can use the method for the messages that matter, whether the routine feels tiring or inconvenient, and whether communication partners need more guidance. If the person's situation or preferences change, the team can reconsider the plan. Follow-up is not evidence that the first plan was a failure; it is a way to keep the method aligned with the person's experience.

What should a useful communication plan record?

A short, accessible plan can help the person, family, clinicians, and regular partners share the same practical information. Write it with the person, in language they prefer, and make it easy to update. It should describe what helps communication work without claiming that every partner will interpret every signal perfectly.

• The person's priorities:

  Include the conversations, messages, and settings that matter to them now. Avoid limiting the plan to care-related requests if they also want social or personal communication.

• Preferred access methods:

  Describe the method or methods the person chooses to use, and note which are still being explored rather than established.

• Positioning and setup:

  Record how the device or materials should be placed, who can help, and what the person can request if the setup feels wrong.

• Signals and confirmation:

  State the agreed signals, how to check a selection, and how the person can reject, correct, pause, or end an exchange.

• Partner behavior:

  Note how to start, how long to wait, whether options are presented in a set order, and what to do when the message is unclear.

• Backups and boundaries:

  Explain the agreed alternative when a primary method is unavailable and identify any privacy preferences or situations in which the person wants a different approach.

• Review date or trigger:

  Identify when the team will revisit the plan, such as after a trial, a change in preference, or a recurring setup problem.

Keep the plan focused on what partners can do. “Give time to respond” is more useful when the person and team can explain what adequate wait time looks like for that communication method. “Use the person's eye signal” is clearer when the plan describes how the signal is recognized and confirmed. If an instruction is not certain, mark it as something to verify instead of presenting it as fact.

Do not let a written guide replace direct interaction with the person. It is a reminder for partners, not permission to talk around the user or make decisions without them. When the person communicates a new preference, update the plan. If partners disagree about what a response meant, return to the agreed confirmation routine and ask the person again when possible.

Frequently asked questions

Does locked-in syndrome mean a person should use eye gaze?

No. Eye gaze is one possibility to evaluate, alongside switch access, partner-assisted scanning, touch, head movement, or another individualized method. The person's goals, preferences, comfort, access, setting, and trial observations should guide the discussion. A diagnosis by itself does not identify a suitable communication method.

Can a family choose a device based only on a product page?

Product pages can help families prepare questions about features and configurations, but they cannot establish whether a particular arrangement suits an individual. An SLP or assistive-technology professional can help structure an evaluation around the person's meaningful communication tasks and preferences.

Is a clinician equipment loan the same as a home trial?

No. Forbes AAC describes a clinician-held equipment loan for evaluation sessions and a separate home-trial process initiated by the user's SLP after an insurance benefits check and coverage confirmation. Each has different steps and conditions. The SLP and provider can confirm which current process, if any, applies.

What if an electronic method is not available in every situation?

The person and team can consider an agreed backup, such as partner-assisted scanning, while continuing to respect the person's preferred method. The backup should include a clear way to select, reject, and correct messages as much as possible. Ask the person which alternatives they want and when they should be used.

How often should an access plan be reviewed?

There is no single review schedule that fits everyone. Revisit the plan after a trial, when setup repeatedly creates barriers, when communication preferences change, or when the person or team asks to review it. Regular partners can also share observations, while keeping the person's own experience central.

Review device evaluation and trial options

Careful assessment, meaningful trials, and consistent partner support can help a person and their team make informed choices about communication access. Keep the person's preferences at the center, document what has actually been tried, and revisit the plan together as needs and goals evolve.