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

Saturday, February 10, 2018

An AAC WWYD, for the professionals

A story for professionals:
Client/Student: 4 year, 5 month old girl. Pleasant, but self-directed. Limited attention span.
Language profile: Expressive vocabulary is extremely limited. Less than 5 clear words, with additional CV vocalizations that parents can reliably interpret. Receptive language is unknown, due to aforementioned self-directness and limited attention span.
AAC notes: Parents have rejected the AAC evaluation conducted by the district. They claim that the recommended device (a 32-cell speech generating device with up to 12 levels) is “too simplistic” and will not provide enough language. They have bought an iPad app and are attempting to implement it without professional guidance. All programming and implementation is led by Mom.
AAC access: Client has significant fine motor impairment. Parent-selected AAC app has 120 buttons per screen. Mom is confident that, with modifications (including a keyguard and/or homemade glove), access is feasible.
Session Notes: Client’s engagement during sessions is variable. Imitation skills are poor. Receptive language is difficult to assess, due to intermittent participation in planned activities. Parent, who is nearby during many sessions, reports that client understands many of the concepts targeted by clinician.
**Of note: Client refuses to acknowledge or access AAC device during sessions. Client infrequently attends to clinician’s modeling during sessions. Parent reports that client is able to use device independently, without prompting, for a variety of communicative functions (requesting, directing, commenting, and answering questions). Client has not demonstrated any of these skills in the presence of the clinician.
Clinician has been seeing client in the home, twice a week, for several months. No interaction with AAC device has been observed.

What would you think?

What would you recommend in your report?

What would you say to the other SLPs in your office/network/online group?

Maya was 4;5 when she started working with our home SLP (H). She didn’t touch the talker for months (MONTHS) in her presence. She only intermittently attended to modeling by the new SLP---often she seemed to not even acknowledge the device was there. I was the mom. This is not a fabrication, or an exaggeration----this is an accurate representation of the facts.
Fortunately, H listened to my reports. She provided advice and was a great AAC/language planning guide/partner, even though she never saw Maya use the device directly (she did see some videos). She believed, or at least acted like she did, and never made me feel like I had to “prove” anything.
I see, sometimes, professionals online who seem to feel like parents (or teachers, or paraprofessionals, or SLPs, or anyone) who believe in the capabilities of AAC users (when they themselves are not able to see these capabilities) are delusional. I see SLPs who claim ownership of AAC and are offended when parents (or other professionals) select and implement AAC systems without a full evaluation (or who reject a professional evaluation and “go rogue”). I see teachers who think it’s pointless to keep a device nearby, since they’ve never seen the kid use the device (or sometimes even look at it) anyway.

It’s gutting to hear these conversations (or to see them online).

Those kids are my kid.

Those parents are me.

I want to make sure you know what our AAC story looked like 6 years ago.

It’s easy to believe in her (and me) now, online.

It was harder back in 2012, twice a week, in person.

I’ll try to keep reminding you.

(image is a picture of Maya, age 9.5, smiling while in motion, looking away from the camera)

Friday, February 2, 2018

The Great Bike Giveaway!

The Great Bike Giveaway is a program run by the Friendship Circle every February.  The goal of the program is to provide children and young adults (under age 30) with adaptive bikes (which can be prohibitively expensive for many families). Here’s how it works:

1. The Great Bike Giveaway partners with the manufacturers of many adaptive bikes, and the manufacturers provide the bikes at a reduced cost.

2. Each child has a fundraising page on the GBG website, where people can make tax-deductible donations (to the Friendship Circle) and help children reach their fundraising goals. If a family reaches their goal, any additional money raised will be distributed to help other children reach their fundraising goals. (The organization also collects general donations that are distributed at the end of the donation period, and bike companies donate some bikes, so that families who have raised more than 50% of their goal still have a chance of receiving a bike.)

3. Kids get bikes and are able to join in riding with friends, siblings, etc J

If you are interested in signing your child up, the link is here:  Great Bike Giveaway Registration (There are a number of different bikes available, so it’s worth speaking with your child’s physical therapist to determine which bike might be the best fit for them!)

If you are inspired by this program and would like to donate to help a family provide an adaptive bike at home, this link will take you to the list of fundraising pages (just scroll down to see them): Great Bike Giveaway 

After a few years of watching this program, we’ve decided that the timing is right for Maya to get an adaptive bike. Will is quick, quick, quick on his scooter and he’ll be moving to a big kid bike this year. Maya has tried scooters and a regular bike (with training wheels), which worked for a little while (kind of)--but now she’s so tall! A typical adult-sized bike doesn’t provide her with enough stability to actually ride. She’s been using an adaptive bike at school (during gym and physical therapy), so I met with her physical therapist to check out the one she uses and to review the different options and sizes. We were happy to see that the largest size (which will last through adulthood—she won’t outgrow it) is a perfect fit for her! We’re excited for her to have an adaptive bike at home, so that she can have fun riding around at the playground and outside, just like her brother and neighborhood friends.

This is Maya riding a Rifton adaptive tricycle at school!
(image shows Maya in a school hallway, with blue lockers in the background. She is sitting on a large red tricycle, smiling and looking away from the camera, hands raised triumphantly)