Friday, April 26, 2019

Families Need Guidance Before Purchasing an AAC app: A response

Yesterday I read an article* that laid out several reasons that families need professional guidance, in the form of a “full assessment” from an “AAC professional” before purchasing or implementing an AAC app with their children. This type of evaluation, the author argued, is necessary because “parents are being lured by the promise of quick success” (in the form of video advertisements that show children “effortlessly” communicating) while, in sober/educated contrast, AAC professionals have been formally assessing such solutions for more than three decades.”

This article was uniquely (upsetting, offensive, divisive) problematic in a number of ways**, but the general sentiments expressed are unfortunately not uncommon in the world of “AAC professionals.” Some AAC professionals (some professionals-there are many professionals who are family-centered and family-empowering) can be quick to protest the acquisition of any AAC system outside of a “full AAC assessment” (often including the term “feature matching”). They seem to hold the belief that any app purchased outside of a full assessment is, by default, unlikely to meet the needs of the AAC user.

Let’s unpack the misconceptions behind that belief.

First, while many believe that a "full AAC assessment" conducted by an “AAC professional” is the gold standard, these professionals can be difficult to access. Many (most?) children who receive AAC assessment receive them through their school district. In some cases, the speech-language pathologist conducts the assessment; in others a specialized AAC team/person may come from the district. In many areas, there’s no specialized “AAC professional” to be found.  

Second, if a family is fortunate enough to have access to an AAC professional it’s important for them to be aware that all professionals are not all created equal---their expertise is rooted in the education and mentorship they’ve received. There are professionals conducting evaluations who believe that the acquisition of prerequisite skills is necessary before high tech AAC is to be provided.  There are professionals conducting evaluations who are making grave mistakes (e.g., moving the location of icons during an evaluation to see if a student “can access a new area” of a grid, and then determining, when the student keeps tapping the previous location of the icon, that the student is unable to access the new area). *** There are AAC professionals sharing fundamentally flawed information (e.g., providing a hand-out to local SLPs outlining perquisite skills that a student should have mastered prior to being referred for an AAC evaluation).***  There are AAC professionals who are known for recommending the same app to the vast majority of students that they evaluate (which is, understandably, because they truly believe that their preferred system is “best” and offers the greatest potential for long-term independent communication-but this seems to negate a bit of the all-important “feature-matching full AAC assessment”).***

Third, yes, a full AAC assessment (if a family has access to an AAC professional and if that professional is one of the "good" ones) that includes feature matching can sometimes be a helpful approach. It’s an especially important approach when the potential AAC user has a unique physical profile or challenges (vision impairment, motoric impairment, mounting/positioning needs, the need for an eye gaze system).  However, it is also possible to undergo a full AAC assessment and receive inappropriate recommendations (as we did, twice, and as many families do). Furthermore, many AAC users can be properly served (and, increasingly, are being properly served) by a different approach: starting with a (carefully selected) robust system and then scaffolding down (or, perhaps, supporting up). An example of this would be to provide a student with a robust system and then mask/hide words so that a small set remains (and providing a keyguard if support for direct access is needed). While I imagine that there are some AAC professionals reading this who would protest this approach, I also know that there are some AAC professionals who currently operate under this methodology when conducting an AAC assessment.  This is also the method is most commonly used by parents who independently purchase and implement apps.

Fourth, the time has come (or past) to stop operating under the assumption that professionals (by definition) know more about AAC than non-professionals. A motivated AAC parent can spend hours surfing, reading, and absorbing information about AAC online. Journal articles (which once lived on the dusty upper floors of college libraries) can be snagged through Google scholar searches.  Videos of AAC implementation, once recorded in clinics and shown during AAC classes, are freely available to view and analyze on YouTube. Leading AAC researchers run Facebook pages and groups (and they answer questions from eager-to-learn parents who send in messages!). AAC professional development, once populated solely by professionals, is open to AAC families (often at a reduced rate!) and also exists online for convenience. Entire AAC conferences can be consumed on-demand and for free. Families can access and learn from other AAC families and AAC professionals on a variety of social media platforms (Facebook pages and groups, Instagram, Twitter, and probably some platforms that I’m too old to know about). Families can access and borrow AAC apps and devices from their state’s AT lending library (or can meet up with local families or professionals to see and try out apps). Families can absolutely attain/exceed the same level of AAC education as many speech language pathologists/AAC professionals. (It’s worth noting here that I am both an AAC parent and a CF-SLP.)

If we reject these four misconceptions, we can believe that it is perfectly possible for families to select and implement AAC apps without undergoing an AAC evaluation. It is possible for families to know more about the best AAC app for their child than an AAC professional. It is possible for families to make mistakes while selecting and implementing an AAC system, but also it is worth noting that these mistakes are no worse than the mistakes that we’ve seen (many. ugh.) AAC professionals make.  

The implication (seen in this article and in many professional online discussion groups) that parents are uneducated, unresearched, impulsive app-buyers is harmful. It discredits families and self-congratulates professionals.  It furthers the narrative that professionals are uniquely suited to introduce children to AAC, and creates/facilitates the belief that family-purchased AAC is likely to be not well thought out or ill-suited.  Roughly half of the aforementioned article discusses the need for assistance with customizing and implementing an AAC system (and I agree that professional support can be invaluable in these areas)---but let’s consider, for a minute, what families will encounter when they arrive in the offices of professionals to seek these services. If these families seek assistance from an SLP who has read similar articles/online conversations, and then disclose that their AAC system was self-selected, will they find a professional who will assume that the family conducted extensive research and has well-thought out reasons for selecting a specific app (as the SLP would likely assume if the family received the app through a “full assessment”)? Or will the SLP assume that here is another example of an impulse-buying family who likely has a less-than-ideal app, like the families they've heard about in articles online?

Maybe instead of assuming that families are quick to act without professional guidance, we should examine why families are having to act without guidance. Or perhaps turn a more critical eye to the guidance that many families (including my own) often receive during the early years of speech therapy for nonspeaking (or minimally speaking) children. Per one AAC mom, 
“If we examine those questions, we find that when a child’s language acquisition is most crucial, many SLPs are brushing off technology or refusing to consider access until certain low/no tech milestones have been achieved. It’s hindering language development when the child is most ripe for it, then leaving families desperate and scrambling to find their own solutions when no (one) seems interested in presuming competence and providing real help.”  (Haley Watkins Johnson, mom to an 8-year old who uses AAC, shared in a FB response to this article.)  
A brief foray into any online AAC group will confirm this reality---these forums are extensively populated by families resigned to find an AAC solution on their own after being misserved by the professionals in their child’s life.

While discussing this article online I was introduced to a term that sums up the ability of families to privately purchase AAC without first seeking approval/recommendation from a professional: disintermediation.  Disintermediation refers to the removal of the middle man (such as the ability to private purchase AAC, splints, wheelchairs, etc.-anything that at one time required an assessment/recommendation from a professional). Ricky Buchanan, who introduced me to the concept, had this to say:
“It seems to me (as a disabled adult) that when disintermediation comes up – anything that allows disabled people and their families to directly access technology that used to only be available via gatekeepers – that the professionals involved are very worried that this means now people will get less ideal outcomes . . . But they almost never talk about how this means that people who never had access to the professionals can now have access to technology, the almost never talk about how this means people who only have access to awful professionals can now avoid them, and they almost never talk to people whose disability meant that the gatekeepers (be them professionals, educators, insurance companies, whatever) thought they didn’t deserve or would be able to use the technology. It’s important that we get people the best outcomes possible, but ignoring all of those other factors is not helpful.”

It’s not helpful to preach that the only right path to AAC is via a professional assessment, thereby also implying that professional opinion is somewhat universal (when it actually varies widely) and that the opinion of any professional assessment would be more sound than the opinion of any well-researched parent (nope).  It’s not helpful to assume that a family-driven app-selection process is, by default, less informed or rigorous than a professionally-guided app-selection process. It’s not helpful to minimalize or ignore the inconsistencies, biases, and misconceptions that families often encounter when they do actually seek a professional AAC assessment.

It’s not helpful.

In a world where AAC professionals are difficult to find, let those of us (families and professionals alike) raise our voices online and help families find their way. In a world where AAC professionals require prerequisite skills, let us share our success stories (and, with permission, videos) that show our prerequisite-skill-lacking children developing into communicators when provided with the correct support. In a world where home implementation is tricky, let us share our tips and tricks and strategies. In a world where an AAC evaluation is only as good as the professional who shows up to do it, let us educate families so that either: a) they can compare/contrast systems on their own and select a good fit or b) they know their stuff, and how to advocate for something robust and amazing, when the evaluator shows up. In a world where “families need guidance”, let us welcome and guide them.

(Image is an old photo of me and my children out at the mall. We are each wearing an AAC device, iPads in bright cases hanging from straps around our necks. My youngest is sitting in a stroller, my oldest is standing behind it. Our faces are obscured.)


** There are many problematic things in this article. I've chosen to write a measured response to the most fundmental issue, as I see it, which is the gatekeeping of AAC access and dismissal of parental knowledge that occurs when professionals insist that the only meaningful path to AAC acquisition is through a "full AAC assessment." In making this choice I've ignored other issues, such as the mention of intelligence quotient and referring to autism as a "condition," that were frustrating in other ways. 
***I have personally witnessed each of these things


Indrani said...

Your response is so very insightful. I know how I fell in the hands of these pseudo experts initially as an invested parent.
Here’s my son’s story -

Marion said...

Hi, I haven't read the whole paper before your answer.

I am an SLP in France, an here, things are slightly diffrerent, and I always strongly recommand to work with an AAC professional to choose the AAC fort the kids.
There reasons are :
- not all the AAC are correctly translated into french, and somme translation are not robust at all, so it is important to take an advice on this,

- the french administration is .... the french administration. Clients here may have many financial helps (and that is REALLY good) but these helps are provided on the acceptance of medical expert of the administration, even for the choice of the AAC. So, it is pretty much important to build strong files to help, and give official strong EBP medical, occupationnal and SLP therapy assessments.
For example, I have a client, 3 years 6 with cerebral palsy, hypotonic et very low intensity voice : noone can hear her in a class room. We've been talking about AAC with the parents, and we have tested many of thoses (snap + core first, proloquo, grid and Avaz) I strongly recommanded Snap (grammar in french is more robust, and Toby can be installed on Indy tablet, which sound is of better quality than Ipad's) that the family and the girls tested at home and in school and appreciated. Then we build a file for the french adminitration and the whole solution have been paid by MDPH (1500 $) I am sure they could have choosed alone, but without professionnal input, they would not have been paid.

- french administration still : in school, for insurances reason, if the kid comes with special needs, you need an professionnal assesments and official acceptation from the Rectorat (the schools regional direction) so it is more efficient to work with an SLP very early while building the solution for the kid.

Anyway, this is something done always with the families.

Best regards and thank you for this marvellous blog

Jennifer Marden said...

Amen to all of this.

In a perfect world, when there is ubiquitous access to a good AAC professionals who presume competence, are intellectually curious, professionally well-informed and technologically competent, who know the essential importance of providing a rich and complete vocabulary, who will work with you in a variety of environments over several months or years to complete an assessment in all environments and adapt the AAC system as needed, and who can train school staff to actually make the system available everywhere, model its use and generally not be dicks about it (the school staff should not be dicks about it, but of course the AAC professional also should not), then sure, you should have guidance from such a professional before purchasing an AAC system. I'm afraid such a perfect world is very very very far away. In the absence of needed supports from the professional world, parents must, and do, do what they can to support their children.

Chris said...

With regard to the misconceptions you list...

In your first point, you wrote "all professionals are not all created equal---their expertise is rooted in the education and mentorship they’ve received." Totally! Yes, and...the word "received" makes it sound like the learning was passive and one time. As a way to improve the profession, the professional should always be seeking new information and education. The learning doesn't (or shouldn't) stop!

In your fourth point, I'd add podcasts to the list of resources by which parents (anyone) can learn - but I might be biased ;)
BTW, if you haven't listened to the Talking With Tech episodes about the AAC Credential coming down the pike, I would encourage you to! I think you'll find some of the conversations similar to this one.

Finally, would you agree that, perhaps, the least restrictive approach would be a collaborative one? By which I mean, professionals and parents outline the needs of the user together using a guiding framework to determine what aspects of a system would restrict the student the least? If everyone came to the meeting with an open mind, willing to come to a shared perspective, the decision becomes owned by all, not just one party. Then everyone shares in the responsibility of device selection. Perhaps this approach is what the profession should be advocating, rather than an assessment. Thoughts?

Thanks for continuing to be an advocate for parents and thank you for writing this post!

Dr. Caroline Ramsey Musselwhite said...

I know some absolutely great AAC professionals who try very hard to work collaboratively with families and school teams. But I also know many families who have had DISMAL experiences, have (very effectively!) spent time self-educating (using many of the resources that Dana highlights), and have been very successful in selecting apps that are very well-suited to their children (feature-matched to life). I have seen some mismatches, but far more setups that have great potential to their children. I vote for collaboration when possible - but I agree with Jennifer Marden that many students are still in situations where the 'gatekeepers' are not supporting the possibility of robust communication systems which will offer the power of interaction.

One more (FREE) resource I'd like to suggest for families / professionals is the wonderful webinar by Maureen Nevers, as part of 43 free online webiners the Angelman Syndrome Foundation:

Thanks for your powerful insights, Dana!!

susan berkowitz, slp said...

This is why I wrote a book for parents. They can't find the professionals (there are too few of us), they find SLPs who do not know what they are doing and give them misinformation, they don't get invited to trainings at school - I could go on. Yes, a good AAC evaluation is wonderful. But lack of access to one should not mean the child doesn't get a communication system. And frankly, I've often said it doesn't always matter WHAT system you give a child, as long as it's robust. Most of the battle is in intervention. How we teach them to use the system. Parents need to know what to do and how to do it. Let's not go backwards.

Unknown said...

My daughter has three different aac options on her iPad and used them interchangeably: we started with Proloquo2Go and that’s mainly what she uses in therapy but I want her to have as many options as possible and learn as many different ones as she wants.

Dana said...

Thank you for leaving your thoughts!

Chris, I absolutely agree that a collaborative approach is ideal.

I haven't heard that episode of TWT yet, but I've got some mixed feelings about the AAC credential. I'll be curious to hear what you guys think :)

Laurie Bouchard said...

I have been following this interesting post along with some of my AT colleagues.
This discussion makes me think of my mentor when I first started working in AT who answered most of my many questions with the answer, “It depends...” I usually left her with more questions instead of the answers I desired. It was a great answer though and helped me understand that no two situations, children, families, teams, etc. are ever the same and each must be explored and reflected upon. It also helped me understand that I was never going to done learning in this field.

Devices are abandoned or ill-suited, both when professionals feature match or when parents self- select an app.
“It depends” on the experience of the professional, and the willingness to research and stay current, the ability to work with others and understand their perspective.
“It depends” on the same things from families.

Thank you for writing this Dana! I hope we can continue the discussion.

Brian Whitmer said...

Heh, I found your post before I found out we'd linked to the original article on our Facebook page. Thank you for sharing Dana! I'm glad you pointed out the problems with the original article, with the caveat that if you can get access to a great AAC-oriented SLP you should most definitely leverage their expertise (how you would know they're "good" on the other hand...). I've also found that engaged parents can be more proficient in areas related to their child's development than the therapists they encounter. I don't mean that as a criticism of the professionals.

The breadth of expertise that is expected of the average SLP is just exhausting for me to even wrap my head around. From swallowing to public speaking to paper-based communication to choosing between different similar software programs to isolating an ideal selection modality, then understanding cognitive development strategies, contemporary interventions for very different disabilities, medical complication workarounds, etc. I meet SLPs all the time who say "I had an AAC use a few years ago, maybe I'll have another one again soon." That's not really expertise. Parents/families can come at the problem from a very different angle and provide some crucial perspective. Ideally the two sides pool their resources and even better things happen.

I've definitely heard therapists complain about parents coming to them with some "weak" communication app and they push them to do a full AAC assessment. And if we're being honest, there are some two-dollar apps out there with very limited potential, being targeted specifically at autism families as a quick fix. The original author argues that those apps aren't going to get people very far down the communication path, and that's probably true. But we also need to meet people where they are at and understand the path they took to get there.

I'm glad there's so much out there online for people to learn from, it's how I first got educated in AAC and started helping my daughter. In my personal opinion the genie's not going back into the bottle, practitioners as gatekeepers isn't really something we can or should enforce, so let's instead focus on empowering everyone to understand what's involved so they can sift through the bad, whether that comes from predatory app sellers or misinformed practitioners, or somewhere else entirely.

John McCarthy said...

Thanks Dana for continuing to share your perspective. It is so critically important for everyone to hear and think about. There are many great posts here about this, so I thought I would just share some observations. These are aspirations most of all, but aspirations help you steer the ship.

The reason I engage in a formal process is to protect me as a professional from...myself. If I come in with a whole bunch of ideas about the way something should be, then I will start to ignore or discount things that don't fit with my view. An objective process that follows a set of steps may not always be efficient. A scientific method is like that. It's ponderous, but if done right it helps everyone to arrive at a decision based on what are supposed to be more objective truths.

Use of a method to control people or close off ideas is improper use of the method. I would argue it isn't even the method anymore. It is something else and is clouded by ego. Chris was right about the need for the approach to be collaborative. I would argue that an objective approach can help the interaction be collaborative.

A formal approach can also help people who are maybe less experienced in AAC assessments. The approach helps them systematically investigate and arrive at a conclusion. With novice professionals I sometimes find it is their own fear of getting it wrong that leads them down all kinds of defensive paths.

Another reason that professionals need an objective approach is that parents have A LOT more data than health professionals do. Ideally the process helps to be efficient in ALL the information that a parent can contribute.

Kind of random thoughts here, but I just want to say that whatever helps all of us communicate is a good thing. I think that feature matching can be that platform. I'm not interested in controlling it, but learning from it.

Cathy Binger said...

Dana and all: Thank you for your comments. I hear you.

Although much was lost in the editing of this article (including the title, which I fully agree is problematic), at the end of the day, my name and mine alone is on this article. I take full responsibility for the tone and messaging. I sincerely apologize for my offenses. Lessons learned.

I apologize that this article paints a black-and-white picture of how families should purchase of AAC communication apps and, more generally, secure AAC services. I fully agree with Dana: many families are savvy consumers who are fully capable of ensuring their children are meeting their communication needs. Also, locating SLPs with AAC expertise is extremely challenging, if not impossible, in many places. Although the ideal combination is families working hand-in-hand with their educational teams – with experts assisting as needed in the family-centered decision-making process – this unfortunately is the exception, not the rule.

Thank you for bringing all of this to my attention, and for introducing me to the term “disintermediation.” As Dana said on her blog, professional opinion is anything but universal, and for many families, opening up channels for families to directly access communication technologies can lead to far better outcomes.

For anyone interested, I’ve outlined below my original intentions with this article, much of which was lost along the way.

1. Assistance As Needed
As Dana pointed out, savvy, resourceful families can and will do lots and lots of research before purchasing a communication app. They know their child far better than any SLP ever will. Further, no SLP owns communication, and such “role release” is essential for AAC to be successful.

However, this is not true for all families. Unfortunately, many AAC assessment centers now see many families searching for help after they’ve spent their hard-earned dollars on an app that may not be the right fit. My intention was to encourage the families who DO need assistance to seek help before making an investment.

Some families can and do benefit from such help; for example, many lower SES families who live in fragile circumstances lack the time and resources to do such research on their own. Having worked as an SLP in two different communities (one exceptionally rural, one urban) with poverty rates of over 90%, in addition to now living in one of the poorest states in the U.S., these issues weigh heavily on my mind. When these families spend even $100 on an app that doesn’t work for their child, it can be a tragedy. However, I completely agree that I should have more clearly contextualized my message: I should have given the many families who have the education and resources to make these decisions on their own their due.

Relatedly, Dana’s caution that AAC experts should not assume that an AAC app was an “impulse-buy” speaks to the need for open communication. Every family has their own needs, values, and histories, and only by listening carefully can professionals hope to provide genuinely useful supports.

2. Technology + Instruction + Personalization
I intended for the bulk of this article to discuss the need for us all to keep our focus not just on the technology, but also the instruction and personalization needed to ensure successful outcomes. Technology, in most cases, is not a magical key that unlocks communication. Families, children, and professionals all can benefit from instruction, in whatever forms are accessible and most helpful to them (YouTube videos, online conferences, face-to-face partner instruction, etc.). Further, personalization of both the technology and instruction helps make sure the fit is right for each child and family. The feature matching approach, which Dana discusses on her blog, is just one example of this kind of personalization.

Again, my apologies. I take all of your comments to heart and will work harder to ensure that I take all perspectives into account.

Dana said...

Dr. Binger,

Thank you for your receptiveness to the points that were raised here. In turn, I also hear the heart of your points. Yes, many families are un/undereducated about AAC (in my professional life as a school-based CF-SLP I've yet to encounter a family-provided system, or a family who was interested in taking a leadership role) and rely on a professional to lead them through AAC selection and implementation. Yes, I'm sure that there are families who learn of a specific system and are so excited to get started communicating that they buy it quickly without "shopping around", so to speak. But, as we agree, many families undergo extensive self-education, and we must continue to speak about them---not doing so not only undervalues each family, but it spreads an inflated sense of SLP-superiority among *some* in the field.

A year ago (March 2018) I read a thread in a professional group discussing a parent's pushy-feeling input into their child's therapy. A commenter wrote "Why are you even considering the parent's point of view in this situation? Aren't you the professional?" Then another commenter said, "Where did they get their degree? Then they can tell me how it's done." (Those are word-for-word, as I was so disheartened that I documented the post.) This conversation was not about AAC system selection, but I have found a similar tone from some professionals discussing family input and preferences in AAC-related online conversations. It's important that leading professionals in the AAC field speak about the importance of honoring family experiences, and about meaningfully partnering with families. I respect your contribution to the field as a researcher and author, and I think many look to you as a leader----and I appreciate seeing you share your thoughts here about valuing family experiences and histories. Thank you. Also, thank you for introducing me to the term "role release" . . . it's a fitting phrase.

While public point-counterpoint discussions can be uncomfortable, and writing online can sometimes open us up to public criticism (I've certainly had that experience many times), I really feel like receiving feedback from other groups (be they professionals, families, or AAC users) serves to widen perspectives and create a greater understanding among our AAC community. The path to success for AAC users is easiest to travel when families and professionals work together, and having these public dialogues, I think, benefits all of us.