OpenAAC

As part of this year’s State of AAC report, we wanted to do more than just report on industry happenings, but also try to look hard at where things are and how they could be better. There are a lot of areas that need to work well to have a healthy ecosystem, and we hope we can help raise the right conversations to keep things improving. We wanted something that would be easy to reference and compare year-to-year, so we settled on the idea of a report card. Check it out here:

For the report, we gathered ands selected from a pool of individuals who were recommended for having a broad perspective across the AAC ecosystem. The ongoing plan is to select a rotating subset from this list. Each participant filled out a basic likert-scale survey (“The situation in this aspect of the AAC ecosystem is healthy and working well.”) and open-ended comments for different aspects of the AAC ecosystem. The scores for each section are the average of these results across all participants and mapped to a letter grade. This first year we kept the number of participants on the small side as we get our feet under us.

There is definitely overlap between the sections, but we figure that’s ok. Please share your thoughts on how you’d suggest we adjust this list going forward – the goal was to start with something and move ahead from here. For each section, we will summarize the general sentiment, potentially including direct quotes from one or more participants.

Community:

Every good ecosystem has a community of participants involved and engaged. As new people enter the community, they should feel welcomed and able to get up to speed easily. A healthy community can embrace new ideas, handle conflict in constructive ways, rally around successes, amplify opportunities for progress, and collectively defend community members from abuse or misinformation.

"More and more people are using AAC, we need to have a good way to count how many people are using it and what types of AAC. This is a terrific problem to have, but we need to find out how many do we have to better serve them."

Based on the responses we received, the AAC currently has lots of communities serving different groups, with a healthy amount of engagement. There is a mixed quality of content when it comes to answers to questions, and differences of opinions are not always handled in a productive way.

"I think there are some serious shifts in our field and the lack of healthy, respectful discourse is not only disheartening but also preventing us from being able to really move forward with new ideas."

Some respondents expressed concern about the complexity of differing viewpoints among AAC users. Specifically, they mentioned that while the voices of some part-time users are being given a platform, there is the risk these perspectives do not accurately represent the needs and issues of all AAC users.

On the flip side, the concern was raised that AAC user voices are still too often being bridled by behavior-focused interventions and technology constraints like guided access, and that the community may be enabling that kind of approach.

Make-Up Work Opportunities:

• Be an example of respectful disagreement, try to learn from rather than shut down different opinions
• Remember why we are all here - it isn’t to “be right”
• Honor all communication attempts by AAC users

Extra Credit:

• Do we need a knowledge base people can reference for repeat questions?
• AAC User Census - Who could take on a project like that? How to safely assess the AAC population while honoring privacy? See also Communication First’s work.
• How to call out misinformation without being confrontational
• How do we foster a “big-tent” community where we can do better than just tolerate different ideas?
• We won’t make progress by “just can’t even”-ing with opposing viewpoints, but we also need to be sensitive to those who have experienced past trauma and aren’t in a place to engage

Advocacy:

Not all ecosystems need advocacy, but it’s important for underserved populations to have a strong sense of advocacy. People being served need the opportunity to speak for themselves and represent themselves, they may need legal protections, or additional scrutiny to prevent abuse or neglect. Some groups do not have the knowledge to recognize or the energy to insist there is a problem, and so they may need help from outside voices.

The AAC ecosystem is extra tricky in this regard, because a large portion of its users are not in a situation to fully assert themselves, and some have intellectual disabilities as well.

"I think more people than ever are realizing that building a culture of learning language using AAC more widely by more people helps everyone. However, that number is still really low."

Adult AAC user advocacy is improving, and there are a growing collection of blogs and online content by AAC users who are sharing their perspectives. There has been a promising push for elevating authentic AAC user voices, but based on the responses we received, it appears that many of those elevations may be token gestures rather than authentic considerations. For example, respondents observed that AAC users are asked to present on their “inspiring story” rather than their field of research, or are hired as “ambassadors” rather than for a more strategic area of contribution, or are scheduled to present at conferences at the less-trafficed locations or time blocks. If we want AAC users to be accepted into broader society, it seems we need to do a better job leading the way within the AAC ecosystem.

Additionally, younger AAC users are not receiving the communicative respect and support that they should:

"I spend time in schools every day, and we’re still dealing with devices being left in backpacks, districts refusing to let the students take their devices home, and an overall lack of accommodations and in many cases, support."

Lastly, the concern was raised about AAC user privacy. Communication interventions are likely to be intrusive, and there is room for improvement in making sure that AAC user privacy is respected and protected. Most especially, we can adjust our data collection practices to not come at the expense of privacy.

Make-Up Work Opportunities:

• For presentations/panels with AAC users, make sure they will have the technology supports to put them on the same level as any other presenters
• Don’t patronize AAC users by restating their comments to the audience
• Don’t enable data logging without explicit user consent, and consider ways to record only summary data or strongly restrict access to raw logs
• Think hard about whether guided access is really necessary

Extra Credit:

• Reorganize conference programs to encourage attendance of AAC user sessions
• We’ve been banging the drum of “just as deserving” for quite a while now, why doesn’t it stick?
• Why are devices still stuck in backpacks or taken away for behaviors?
• Industry discussions about navigating the tradeoffs between privacy and actionable data
• Engage AAC users for real jobs, presentations, etc.

Business:

Businesses are an important part of many ecosystems. They help to fill a need in a reliable and sustainable way. However, business pressures also risk preying on the population they serve through unreasonable pricing or onerous control. A healthy ecosystem applies the right kind of pressures on business to safeguard against things like vendor lock-in, stagnant development, or poor responsiveness. The best businesses find ways to collaborate with the community and to sustain a healthy competitiveness that raises the quality of experience for everyone.

"We have many many companies who make language system these days. No matter if it is an app, a device, a switch that play messages, a low tech device, or a mid tech device, they are all important for companies to build. A good mix of companies in AAC is excellent for our field."

There are a healthy number of AAC apps and tools available. Some are well-established and battle-hardened, and new ones are being introduced at what seems like a reasonable rate. Our respondents pointed out, however, that some common-sense features still need more global adoption, such as updating a vocabulary from a separate device, and real-time synchronization of content.

"Many new apps seem like engineer/programmer parents of AAC users thinking that the hard part is the coding, making a new app for their kids and then either making it free or selling it, without reference to existing options to either use the good parts or intentionally innovate off the parts that should change."

Additionally it was pointed out that there doesn’t seem to be a strong motivation for change in the AAC market. Hardware-paired vendors go after high-ticket, insurance-funded devices, and so don’t actually need that large a scale of customers to be profitable. But software-only vendors, who have to focus more on reaching sustainable scale, often struggle getting to the level needed to maintain a full team. Neither model lends itself well to ongoing research and innovation. To really pile it on, practitioners and caregivers who would normally be one source of new ideas, are overworked enough that they often don’t have time to do more than find a workaround and move on to the next task. We need to find a way to move beyond “I guess this is as good as it gets” or “they must have known what they were doing” to “I should tell them how this could be easier”.

Some innovation is happening on the fringes, but the tone from respondents was mostly “same as last year”. Most AAC apps have seen few usability improvements in the last 10 years. It’s important (for many reasons) that there aren’t jarring changes to the actual communication board interface, so this is not all bad, but there is still plenty of room for improvement in editing boards, configuring, preferences, etc. Many vocabularies could also use a refresh, with fringe words ranging from “cassette” to “Wii” to “k-mart”.

The general sentiment around upcoming innovation is that AI has a lot of potential, but that business could better refine the areas where they’re focusing their AI efforts. Faster message generation is interesting, but risks putting words in people’s mouths, and there are other deep issues that could benefit from AI support, such as personalized adjustments to vocabulary or communication partner coaching.

Make-Up Work Opportunities:

• Vendors, update your vocabularies. If you need help, maybe ask a GenAI: “which words here are outdated”
• If you wish something was different with an AAC app, say something!
• More scrutiny around AAC vocabularies

Extra Credit:

• Apps should copy each others’ features more often!
• We need to change the paradigm and stop thinking of AAC vocabularies as set in stone, we should expect them to be improved regularly
• Hard look at whether our business models can sustain a healthy AAC market
• Push for cross-product collaborations

Research:

Good ecosystems are constantly driven to improve. Some of that happens through business experimentation, but it is also fortified by ongoing research and investigation. There is always another round of questions to ask, and another layer to peel back on the path to understanding. Productive research is not agenda-driven, and is not weaponized by community members, but instead serves to inform and engage everyone in seeking new opportunities and new ideas.

"Most research with actual AAC user participants involves very small sample sizes and then clinicians generalize well beyond what the actual studies support."

AAC research is happening, and the are many important questions that still need to be answered. Getting enough research participants to have confidence in research results is an ongoing issue. There is also still a discoverability issue when it comes to AAC research, which often happens in isolated circles or echo chambers.

With larger online communities, it’s becoming possible to recruit more AAC users directly online, but sometimes this doesn’t always happen in the best way. Our respondents reported that some survey work requires people to report their connection to the AAC field, and AAC users who are also researchers would be required to select “AAC User” OR “Researcher” instead of having an option to select both. Additionally, online recruiting runs the risk of skewing results when it’s easier for part-time AAC users or keyboard-based AAC communicators to respond than the general population of AAC users.

Make-Up Work Opportunities:

• When asking people what their role is, don’t require them to select “AAC User” OR “Researcher” OR “SLP”, and don’t ask other questions that forcibly shoe-horn respondents into an either-or situation
• Make sure your survey questions don’t use exclusive language, and are worded in a way that applies to AAC users in addition to other interested parties
• If you want to see more AAC presenters sharing their perspective, you need to attend more sessions by AAC users.

Extra Credit:

• How to ensure a representative sample set for research
• Where are AAC research projects aggregated and shared? How are AAC users recruited?
• AAC users, due to barriers, seem more likely to pursue non-traditional avenues of research. If these are rejected for conferences out of hand, then there is a problem.

Individualization:

A healthy ecosystem serves the population by serving the individuals. There needs to be enough variety to allow for individual choice without confusion. Individuals should be free to combine components that work best for them to create their own solution, rather than being forced to accept sub-par bundling or lack of options. They should be able to see examples of others who have adopted similar solutions, and find help in developing their setup over time. Individuals should feel in-control and able to adapt their personal solution as their situation changes, and without having to lose their prior investment. Some components may come and go over time, but the individual’s investment is respected enough that a migration plan is available when needed.

Our respondents reported that there are good mentoring opportunities and user groups available in some places, and there are a diversity of options available for AAC, which is important. There are many alternative access options available, and AAC vocabularies come in multiple flavors so it’s easier to find something pre-built that works for an individual.

Personalization gets pushback, though, when it runs up against the time constraints of support staff. There is a trend in some areas to channel most AAC users toward a single app or vocabulary, which is done primarily so that staff can be better trained and more likely to model and reinforce learning in that vocabulary. Depending on the individuals this may not be a problem, but it’s an area that needs careful consideration. Either way, most supporters still seem unfamiliar enough with AAC user vocabulary to model effectively. Incidentally, as AI makes it way into more areas of AAC, it’s likely that individualized vocabularies will become more and more common.

"Individualization is also often used as a reason to say that we need to hide words, and then that a person needs to prove they’re ready for more words by... using the words they don’t have access to?"

Make-Up Work Opportunities:

• Consider carefully before hiding words on an AAC device
• Look for mentoring or peer interaction opportunities for AAC users
• Let the individual’s situation drive AAC selection

Extra Credit:

• Examine industry opportunities for interoperability
• Incorporate AAC supporter training into strategy so that everyone around each AAC user is proficient in their vocabulary

Families:

Healthy ecosystems understand that they do not operate in isolation. There are supporting parties that need to be aware of and empowered regarding implementation. In a productive technological ecosystem, these parties understand their level of responsibility and see the touchpoints that they will be expected to manage. They feel enabled and ready to do so.

For quite a while now there have been a lot of AAC resources available, but the amount of content that is consumable by families and newcomers has improved significantly of late.

"I still think that parents don't have the skillsets to know exactly how to get started and how to navigate roadblocks. They at least can know enough to understand when something isn't right (I.e. not a robust system) OR something isn't working. So I've seen some improvement here, but we still have some ways to go!"

Respondents also commented that families still don’t always know that AAC is an option, or who to approach about it for more help. When a news story covers a specific strategy (for example, a new BCI interface) some families will rush to find a way to implement it because it’s the only option they’ve heard of. Families can often feel discouraged when progress doesn’t happen fast enough, and they may seek out alternative solutions or strategies.

Families are also self-organizing into support groups, and it is becoming easier and more cost-approachable for families to implement AAC without having to go through the traditional gatekeeprs of insurance and an SLP. Sometimes because of the uneven distribution of AAC expertise, they still have no choice but to research and implement on their own.

Make-Up Work Opportunities:

• Share introductory resources with families
• Keep and share success stories so others can benefit
• Be honest and clear about expectations for AAC implementation timeline

Extra Credit:

• How can we raise awareness of AAC for those who need it but don’t know it’s an option?
• Better way to direct independent implementers to resources that can help them be successful

Practitioners:

Some ecosystems require additional expertise to help educate and train those who aren’t fully or constantly steeped in the ecosystem. In those cases, proper accreditation can help, as can a clear path to continue to welcome new experts as the pool inevitably shifts. These experts need access to information and resources that are not siloed by geographic or socioeconomic barriers. They need a clear understanding of their accountability and a process through which the pool of experts is sufficiently large, accessible, and up-to-date.

The good news here for AAC supporters is that there is not a famine of resources. People who want to sharpen their skills in AAC have a lot of great options. And while SLPs are often the first thought when it comes to AAC, ASHA certification is not a requirement for gaining and maintaining the expertise needed to support AAC users. AAC experts come from many different backgrounds.

Even still, the number of experts is arguably too low. Speech therapists without AAC expertise may find AAC users added to their caseload, and in some areas the number of people who understand current best practices is in the single digits.

"We have no good number to know how many universities offer a class on AAC. Professionals STILL tell me that they didn't have a class on this, maybe one of their classes talked about AAC one day."

There is a never-ending option of professional development options but I think where many of these teachings lack is the practical application -- it's so much theory and that doesn't land for a clinician in the field! Especially if they are newer and they can't figure out how translate the theory in a clinical way.

Make-Up Work Opportunities:

• If you’re not regularly supporting AAC users, add it to your personal continuing education plan
• Add an AAC advocate to your Insta/TikTok/Facebook feed

Extra Credit:

• Consider requiring AAC clinic or class at more universities
• Try to include more practical examples mixed in with theory
• Film your work – even if it makes you nervous! Don’t fret if you do something wrong, we all need to learn more from each other and many people don’t have anyone else to learn from!
• How can we expand AAC expertise to underserved areas?

Marketing/Outreach:

A strong ecosystem is identified, accepted and respected by external communities. Best practices are well-understood and entry points and opportunities are clearly advertised. Outside parties may not know exactly how to onboard someone, but they know who to refer them to for that purpose. For those who are self-motivated, there are clear paths for them to get up-to-speed and self-serve without waiting for time or approval from gatekeepers. There is enough awareness in the outside population that inbound referrals are expected, and poor practices or questionable gimmicks are easily identifiable.

"Okay, when Out of My Mind movie was made available to watch I thought we would have seen more awareness stories on the news, 20 20 ABC news show would have a show on AAC, and local media doing a story. We didn't have any of that and I was watching for it everyday. I tried to comment on anyone's Facebook post about the movie to say if they have a group that was watching it and want to talk to someone who is using a device to talk. I got no one who write back to me and that was disappointment and frustration."

Respondents reported that people outside the AAC community often don’t even know AAC is an option. Or if they do, they don’t make the connection that it could help someone they know personally. Movies like Out of My Mind, and playground core boards are helping raise awareness and introduce AAC more to the general population, but it still too often is happening in a sort of “that’s nice for someone else” sort of way.

Even within the AAC community it can be hard to find examples of AAC use to share. As a personal example, I’ve been surprised both years by some of the pop culture AAC references people linked to for the State of AAC survey. I hadn’t heard about many of them at all! I won’t pretend I’m the best at watching for AAC news, but it’s not like I’m not trying, and I still miss plenty. A lot of awareness still seems to happen by word of mouth in the AAC ecosystem, which means it’s not propagating as broadly or as effectively as it could.

Additionally, concerns were raised about whether best practices are actually propagating, and over whether there is enough of an effective inoculation through awareness to prevent charistmatic pseudoscientists from drawing the unawares away from more sound approaches.

Make-Up Work Opportunities:

• Share your success stories online, and re-share from others
• Contribute to community awareness efforts like outdoor core boards, open houses, and school inclusion efforts

Extra Credit:

• Where are the news sources for AAC?
• Where are the app ratings for AAC?
• How do you know, other than by word of mouth, which apps are, say, easy to edit?
• What disability communities can benefit from AAC but aren’t generally aware?

Education:

When ecosystems overlap with our education system, it’s important for the two to interface effectively. This means that learning is integrated rather that compartmentalized, and in a way that naturally fits with the existing teaching models and curriculum. The interface should not result in a subset or pared-down experience for learners, and should allow all learners to intermingle in supportive ways.

For AAC in particular, we specifically call out the importance of teaching literacy and creativity, as these are two of the aspects of education that are very often dropped due to the additional requirements placed on teaching staff of many populations who require AAC. Literacy doesn’t always seem to make the cut, and creativity for some reason gets forgotten specifically when working on AAC strategies.

"I am pushing so hard to teach literacy to teachers and school-based SLPs and I have very few students who are actually being supported well in their school environments --- across communication/ literacy learning AND academic instruction."

Grade-level-equivalent teaching is still not common, and there are still too many cases of hand-over-hand, forced compliance, taking devices away as punishment, etc. Respondents pointed out that some portion of the problem is systemic, which unfortunately makes it that much harder to address:

"There is a huge need for school teams to say 'He is making so much progress' --- when in fact very little progress is being made."

This is the single “fail” grade given in this report. While that may seem a little harsh, it seems like the respondents were discouraged that more progress hasn’t been made recently, and that the same issues are still coming up over and over again. This is not to say that there are no success stories happening in AAC education, there are truly inspiring educators and teams who are making enormous differences for AAC users, but the environment they are working in is often working against them, and the successes are not happening broadly enough yet.

Make-Up Work Opportunities:

• Remember education is about exposure to ideas more than it is about assessment
• Include literacy goals for AAC students
• Use creativity to foster more open-ended communication opportunities
• Step in and re-teach when you see hand-over-hand, forced compliance, or access restructions as punishment
• Make opportunities to normalize AAC use
• Honor all communication attempts, even if they are inconvenient, repetitive, or unclear

Extra Credit:

• Work toward whole-program initiatives that support literacy learning and exposure for AAC users
• Examine how institutional pressure for measurable progress is particularly problematic for many AAC users

Funding:

If an ecosystem is not wholly self-sustaining, it can be buoyed by additional outside funding. It’s important that funding sources be consistent and reliable. They should not be excessively onerous or intrusive, and should be broadly accessible across demographics. Outside funding should not be required, as there should be options that can be accessed without funding. In certain situations charities may also be involved as a funding source.

"The fact that you had to write 'charities are accessible and able to help' in this question tells you everything you need to know. It's not an expectation that robust AAC will be provided yet."

"It's not all bad...there are less gatekeepers than 10 years ago, but the systems to get access to robust devices is still exceptionally problematic, cumbersome, and difficult."

Funding, as pointed out by respondents, is still a major gatekeeper for AAC implementation. The price of an AAC system has gone down significantly, but $1000 is still out of reach for many families, so reliance on school or private insurance is a real thing.

The AAC funding system has been around longer than the iPad, and seems to be only slowly adapting to such a drastic price change in hardware. Insurance will likely always skew more expensive than DIY to ensure a 5-year tech lifespan, but the gradual increase in demand for AAC will hopefully provide a downward pressure on price without negatively impacting the AAC market size.

"Insurance is more annoying than ever, and the major AAC companies are involving insurance to fund repairs."

Make-Up Work Opportunities:

• Call out bad behaviors by AAC funders when they happen
• Any other ideas??

Extra Credit:

• We need more pushback if districts or programs refuse to allow AAC devices to go home with the student
• Is there a way to apply broad pressure on insurance companies for taking so long to approve AAC devices?

Openness:

To varying degrees, healthy ecosystems also exhibit properties of openness. A sustainable technological ecosystem often has one or more free and open-source options in addition to paid or hosted solutions. In order to better sustain collaboration or interoperability, many tech ecosystems adopt or implement a set of industry standards as a show of good faith and assurance of sustainability. When an ecosystem is large enough to support healthy business practices, there also arise charitable organizations or individuals who begin surfacing open-licensed content as more affordable alternatives.

For this aspect, we at OpenAAC generated the grade ourselves. It’s kind of our thing, and it’s one that’s a little harder to quantify. Many AAC apps are still heavy on the vendor lock-in, and you can’t get out the content you put into them. Vendors treat their vocabularies as protected intellectual property instead of releasing them out to the community. Most symbol libraries are copyrighted with heavy restrictions on use. Some AAC assessment tools have moved behind paywalls or logins, and there really isn’t much notion of interoperability in the AAC marketplace.

There are a lot of promising things happening in the world of “open” that can improve things for the AAC ecosystem, which is what helps bring up the grade higher than it would be otherwise. More AI voices are becoming broadly available, and the non-vendor community is generally good about sharing resources. Some of the newer AAC apps are adopting open standards to make it easier to import/export from one system to another. We think there is definitely room for improvement, but things are at least moving in the right direction.

Make-Up Work Opportunities:

• Try out any new AAC apps you see, and give the team feedback
• Share online resources that don’t require a login or paywall to access

Extra Credit:

• Work to change the mindset around proprietary vocabularies and individual ownership of vocabulary
• Encourage vendors to support industry standards

Conclusion

…Yeah, it’s not really a report card you’d be excited to bring home and stick on the fridge. We can see how having too many “room for improvement” sections can really pile it on for someone. But frankly it’s not that far off from what we came up with internally. The good news is if we all pick an area or two and try to take a few steps forward, a little bit of progress in a lot of places won’t go unnoticed.

Hopefully you see something you can do to help. The goal of this sort of report is, of course, not to just point out what’s broken, but to help identify weak spots so we can all give them a little more attention. We hope by reading through this you saw something you could do differently, something you can help improve upon, and together we can all bring up the GPA for next year.

Special thanks to our team of participants this year! The team of six included AAC users, vendors, practitioners, researchers, thought leaders, and at least one family member.

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