Monday, June 3, 2013

The Gatekeepers



Children with complex communication needs (CCN) need various devices, tools, and supports in order to communicate effectively and to access the curriculum in their schools. This is a simple, solid, well-researched principle and it is the legal right of a child with CCN to have a device and the support services necessary to implement the device (staff training, family training, etc.).

Between the children and the devices stand The Gatekeepers . . . the professionals (generally SLPs) employed by the DOE who have the responsibility of evaluating children (of various ages), assessing their strengths and weaknesses (despite having just met them) and formally recommending an exact communication device/app that will serve them for at least the next year (after only working with them for an hour or two).  It’s a big job. A huge job. The correct recommendation can allow a child to suddenly answer questions in class, make small talk with her teacher, ask questions, and make connections. A faulty recommendation could be too complicated, left to become an expensive paperweight as it is abandoned by the staff or the user . . . or it could be too simple, quickly rejected by a child who tires of saying “Today is Tuesday.” “Today is cloudy.” “I want juice.”

These gatekeepers . . . I don’t trust them. And you out there---parents, classroom teachers, therapists---you shouldn’t (blindly) trust them either.

This mistrust---it is not paranoia. It is based on countless emails (from around the world), an unfortunate number of personal conversations, and two startling encounters that I have personally had with the gatekeeper who would be in charge of Maya’s AAC (I said “would be” because this person would actually have the power to determine what Maya is allowed to use, if I hadn’t decided to reject her recommendation and go rogue). Seriously, the most recent exchange---in which she deemed Maya’s AAC device inappropriate and attempted to replace it with something else---will blow your mind. But I’ll get to that in a minute.

I want to be clear on this: I do not believe that the gatekeepers are intentionally trying to foil children with CCN, to withhold resources from them, to impede their ability to communicate and to make progress. I believe that they want to help, and I believe that they think they are helping. But the people who rise to the position of gatekeeper have typically been working “in the system” for a while, and they are frequently set in their ways. They often have a handful of go-to items that they recommend (you get a TechSpeak, and you get a TechSpeak, and you get . . .um . . . a TechSpeak). They can be overconfident---sometimes brazenly so---and are often unreceptive to concerns/push back from parents (and sometimes even from school staff) who they view as either uninformed or misinformed about AAC. Since the iPad boom, many gatekeepers are now borderline paranoid that families “just want an iPad” (that was basically the opening line of our assessment last year---“we’re not going to just give you an iPad”---despite the fact that I hadn’t requested, or even mentioned an iPad.)

A professional who is overconfident, who tenaciously adheres to her recommendations without accepting  input from others, who assumes that others are misinformed, who becomes defensive when families express a difference of opinion, and who enters a new situation with the predisposed assumption that she’s going to offer one of three standby items . . . well, that’s not a great professional. Now if that same professional is in charge of speaking for children who have no voices of their own . . . well, that’s downright dangerous.

My daughter, Maya, is a 5 year old with complex communication needs. She had a (terrible) assistive technology evaluation from the DOE last year, in which I fought for a dynamic device that she would be able to grow into, and the SLP in charge insisted that a static 32-button device was all that she needed, and all that she would be capable of using for the upcoming year. (The above paragraph is a fairly accurate description of L, our evaluator from the DOE.) I have since learned that preschoolers are notoriously underserved with regards to AAC. Assumptions about starting slowly, not overwhelming the learner, proving competency on low tech/no tech systems before progressing to dynamic displays are so ingrained that many old-school evaluators don’t even think of these things as biases, they think of them as facts. (sigh)  After this disheartening evaluation I realized that the only people who would presume competency and have audaciously high expectations of Maya were my husband and I.  I logged a ridiculous number of hours researching AAC and got Maya set up on a communication app that has proved to be wildly successful for her.  The video below, presented at an AT conference on April 27th, shows how she became an independent communicator (and it’s pretty inspirational, too). After our presentation we were approached by several DOE employees who commended us as a shining example of how AAC can be successful with early learners.




If you don't want to watch the whole thing, you should just fast forward to something in the last 2-3 minutes and watch for 30 seconds. It will give you a frame of reference for the madness below.

So imagine my surprise when,10 days later, I received a call from L, informing me that she had just finished Maya’s AT re-evaluation. (I had requested the evaluation months earlier as a formality, a part of the Turning 5 process, but was not notified ahead of time that the evaluation would occur that day—otherwise, I would have been there.)  When I requested the evaluation, I had assumed that the evaluator would make note of the fact that she was using a dynamic display device with a communication app functionally and independently and that should be protected on her IEP. I had assumed incorrectly.

L stated that based on her observations and reports from the staff, Maya was “unable to navigate her system independently”. She said that “the display was overwhelming” and that Maya “didn't have the motor skills to access the buttons or the keyboard”. She said "when I saw it, even I was overwhelmed by it." She told me that when Maya wanted to request a drink it took her “several minutes” to find the correct button.  (At which point I could not prevent myself from interrupting “Hold on. That is simply not true. There is no possible way that it took her several minutes to find the button for drinks. You are a lying liar who is falsifying evidence to make your case stronger, but I am smarter than you realize.” Ok, I may not have said that last sentence aloud, but I thought it.)

You may be wondering how anyone, even an overconfident biased gatekeeper, could spend time with the girl in the above video and come away thinking that her app is anything less than the perfect system for her . . . but, to be fair and honest, it’s not as simple as that. It is important to note here that Maya often chooses not to use her talker at school. I am reasonably sure that this is because the classroom staff models on many different devices (as opposed to home, where our modeling all occurs through her talker). As professionals know, aided language input is basically the most powerful tool that communication partners have----and since Maya is able to code switch with ease, she will gladly hop on to a TechSpeak, a communication board, a PECS book, or whatever the teacher is modeling with in front of the small group. She is also using word approximations with her speaking voice more and more.

However, Maya’s choice to use multi-modal communication is not in any way indicative that her current AAC device is ill-fitting or inappropriate, or that she is not able to access it independently. To the contrary, L was informed that I had “extensive video footage” of Maya using the device independently at home, but that they did not often see the same level of usage at school. (Interestingly, L acknowledged that she was told that such video existed but expressed no interest in actually seeing any of it. A weird decision,I think--- to intentionally choose not to view evidence of a child independently using her system before declaring “This child cannot independently use her system!”)

This conversation was heated, as you may imagine. When I was able to get a word in edgewise I pushed back, specifically asking "did the staff say that she is unable to use her device or that she often chooses not to in favor of using the other systems that are being used in the classroom" she relented that yes, they said she was able but refused. However, as our conversation progressed, she often returned to a language of disability. 

The gatekeepers might think that this is semantics, but it’s not. A child like Maya, stubborn and willfull but flexible and clever, may jump around to different systems. Or she may entirely reject her system from time to time—and she’s allowed to do that. Sometimes I don’t feel like talking either. And there are certain people who I’d prefer not to talk to at all, ever. But there is choice and there is ability . . . and if she has proved, repeatedly, that she is able to use a complicated, full AAC system that can grow well with her and carry her into adulthood . . . then to take that away is worse than a bad idea. It is a tragedy. It should be criminal. How dare L call me and tell me that she wants to take Maya’s system away and replace it with---

Oh yeah. I didn’t tell you what she wanted to replace it with.

L’s  recommendation was to switch to a New App. She wanted Maya on a 15 word display (despite the fact that she currently uses a 120-word display to independently produce novel spontaneous utterances). She thinks that because New App uses word prediction (shifting screens that prompt next word choices) Maya will have greater ease at participating during certain parts of the school day, like morning meeting. I was concerned that New App doesn't operate according to LAMP principles, and that Maya already has learned a large vocabulary using an app that works via motor planning. L said that since Maya was able to quickly make sentences on New App during the trial, this wasn't a concern. (Maya could make sentences on anything quickly, she’s a sponge like that.)  I was concerned that New App will allow for fast sentence production, but robotically (“Today is Tuesday, Today is sunny. I want the blue marker.”) but will take away her spontaneous, true communication (“Rainy. Tornado! Scary.” ---which might not be grammatically correct, but it’s creative and spontaneous and way more valuable to me than “I want the blue marker”). L told me that her only concern was ensuring that Maya was able to access the curriculum, and that pragmatics and social language were not her priority.

So basically, we should take away Maya’s only way to communicate her thoughts and replace it with a system that would that would decimate both her vocabulary and her ability to speak in a novel, creative manner. Also, the meager vocabulary that would remain would be reorganized in a system of folders . . . so a word that she could currently say with 2 taps could take 3 or 5 or 6 taps, and she would need to remember first tap this folder, then tap this other one, then scroll down and tap another folder and then there it is!  We should take away her language and give her something “simpler” because you don’t think she is smart enough to handle her system. Because you underestimate her, and your goals are consequently minimal.  Because she is stubborn and won’t comply with requests to use her talker, you want to take it away and give her a system so beneath her long-term (and really, short-term) capabilities that it is disgusting.

It’s akin to telling Picasso “Show me how you paint. Come on, show me!” and then when he fails to perform for you demonstrate his ability, you ignore his body of work, declare his paints too complicated, and leave him with a pat on the hand and a box of crayons instead.

(Yeah, that’s right, I just compared my kid to Picasso.)

If there are gatekeepers reading this, know that you are potentially dangerous. Make note of Maya. Make note of her, see how wrong one of your professional brethren was, and carry her with you as you move through your day’s multiple evaluations. L did not presume competence. L did not believe that Maya’s code-switching, multi-modal communication abilities, combined with her stubborn sass, could make her a child who is oh-so-able but also not-so-compliant. She assumed that my child wasn’t capable and she assumed that I was a mom who was overestimating her kid, who had bought an app without doing my research.

And she almost took Maya’s voice away.

Now I know that I’m just a lowly parent, likely misinformed or uninformed about this newfangled assistive technology wizardry. But before you cast this essay aside as the ramblings of a biased, over-estimating mother, allow me to introduce a piece of evidence that supports my case. As it turns out, L’s DOE evaluation was so late in coming that I had a private assistive tech evaluation done at a hospital in the city (rushing to have something on paper for our IEP meeting) two months earlier. This team met with Maya 3 separate times, realizing that she is slow to warm up and unlikely to perform on demand. When I told them, at the end of a frustrating first session, that I had video of Maya using the talker independently at home, they were eager to see it, to understand the full picture of Maya as a communicator. This team wrote a formal report that basically was an exact negation of L’s recommendations.  Here is one paragraph from that report:

During the initial evaluation and when getting to know Maya, it took Maya some time to feel comfortable using the device on command from therapist. Rather, Maya appeared to engage in conversation using the device when her mother and therapists were speaking. Once feeling comfortable with the therapists, Maya demonstrated ability to find icons in various folders demonstrating the potential for functional ability to communicate using this device. With practice at home and in the assistive technology occupational therapy clinic, Maya has demonstrated with ability to sequence selections. Additionally, Maya has demonstrated ability to search for icons by typing the beginning of the word on the on-screen keyboard.  It is evident that after searching for one item, she is able to locate the icon later on in the session suggesting sufficient carry-over when using the device.

I am an informed parent, and I speak SLP with surprising fluency. I understand and can debate best practices with regards to device selection and implementation. I am open-minded enough to carefully consider suggestions (I even called other AAC specialists to discuss the merit of possibly switching apps, just to make sure that I wasn’t overlooking something in my commitment to our current system) . . . but I am also confident enough to stand my ground.

I am not the typical parent who walks into an AAC evaluation. And that’s what scares me the most about these gatekeepers. Their recommendations are often unquestioned . . . or questioned gently. A timid “You don’t think he could handle more than a TechSpeak?” gets railroaded with “We can always re-evaluate him next year and maybe by then he’ll be ready for more. Right now we don’t want to overwhelm him with too many words---you know, he’s never seen anything like this before. He can practice at school during snack time for a few weeks, then they can make some activity-specific boards, and then he could even start using it at home! That’s a lot of things to work on!” 

(That’s not a year’s worth of stuff to work on.)

Fight hard, parents. This is your child’s ability to communicate that you’re fighting for. Children who learn to take conversational turns are able to become more assertive and independent as they are empowered to speak up, instead of sitting passively and waiting for someone else to (possibly) speak for them. Children who learn to combine words and phrases and form expressive sentences are actually mapping the language parts of their brains.  This is not just about answering simple questions or requesting a snack, this is about language development, cognitive development, independence and empowerment.

This should not be blindly left to a gatekeeper. A child’s communication system should be determined through careful collaboration of the parents, professionals who regularly work with the child, and the gatekeeper . . . not to mention the user, if he or she is old enough to reliably indicate a preference for a particular system.

Educate yourself. If your child has enthusiastic teachers or therapists, educate them about AAC as well. (Not to be biased, but this post isa decent compilation of resources to get started with.) Go into these evaluations with some loose ideas of what you think might work. Listen with an open mind, and if the gatekeeper has a different opinion ask questions like “In which ways do you think (their suggestion) would be more appropriate than (your preference)?” Do not be afraid to push back. Do not get railroaded, do not let them rush things. This is not just the gatekeeper’s first appointment of the day, this is your child’s voice.

Do not be afraid to have audaciously high expectations of your child.  Do not let a gatekeeper make you question your child’s ability or competence.

Finally, to the gatekeepers. I am sorry if you read this and became infuriated with my misrepresentation or lack of understanding as to your intentions and responsibilities. I am sorry if you feel like I painted an unfair picture of what must be a taxing job. But we had 2 evaluations with our gatekeeper, 16 months apart, and her underestimation of my child (both times) would have had the potential to destroy a great deal of progress and lower the expectations of Maya’s educators if not for the fact that I was informed enough to get mad and fight back. And so, quite honestly, I don’t mind offending hundreds of you if this blog post empowers even one family to presume competence, dream big, and fight back.

An important addendum (6/4/13): In hindsight I realize that this post could read as if I am anti-low tech (or no tech) AAC, which I am definitely not. What I am against is the underestimation of kids with complex communication needs, and writing about our experience of having the TechSpeak pushed at Maya was the easiest example for me to extrapolate from. I think TechSpeaks, communication books, communication boards, BigMacs, PODD books, etc can all be used appropriately and wonderfully. I do *not* think that every child should start AAC on a dynamic display any more than I think every child should start AAC on a TechSpeak. 

Bottom line: AAC is not one-size-fits all----- the team should just be aiming high and presuming competence when they select a system, and the specifics of that system (high, low, or no tech) will be highly variable.

18 comments:

strengthforthejourney said...

*stands applauding* BRAVO mom! Thank you for raising MY awareness and potential for what my daughter may be capable of. I have not been able to try AAC for my daughter yet as the gatekeepers don't believe she is ready for anything more complex than a choice of two items. We also don't have the money to purchase an i-pad for ourselves, so I haven't been able to try anything like this. You have given me hope for so much more than just 2 choices!

Anonymous said...

Thank you so much for writing this. My 7-yr-old daughter has been using AAC for 3 years and our experiences parallel yours. Thank goodness we had an excellent private SLP who helped us find a LAMP-based device (Vantage Lite) for our daughter. This NEVER would have happened through the school. The importance of an independent assessment can't be over emphasized.

Anonymous said...

I don't mean to be a debbie downer, but there is a disconnect for me when people have high expectations for school systems, or any public system for that matter (e.g., government.) They are broke, the educators are stretched thin, maybe under-qualified, maybe they're qualified but just don't care, have limited resources, etc. I just don't believe that they can be all things to all people. And, by all people, I mean those with special needs and those without. We will spend thousands of dollars to put our kids through a private school because we don't believe our public school can educate our kids in the manner in which we want them to be educated. And, we're not moneybags, far from it- no iPhones and fancy cars in this house. I would much rather be a SAHM but I work so they can be educated well. I guess what I am trying to say is that I have very low expectations for educating my kids in a public school system. I always figured that a public school would never align with how I want my kids to be educated, so I always assumed we would pay. I never understand when people have high (or even moderate) expectations for school systems, regardless of the level of ability of the child, if that makes any sense. Just like you, I know how my child will learn best, and it's not by sitting at a desk filling worksheets out all day. I know they are capable of much more. But, I wouldn't expect otherwise from my school system. This doesn't speak to your situation directly, but if you lower your expectations of 'the system' - not your child, then maybe there would be less angst. Hope this is taken with all the respect that's intended.

lisa said...

Love this post! I am so glad you're sharing your story.

In response to the public schools comment, there are many wonderful public schools with highly skilled and amazing educators. While I agree that educators may have too many demands placed on them that does not mean they are underqualified or indifferent. :)

Robin said...

Thank you so much for writing about this topic. It is a such a shame that 'professionals' in the position of evaluating AAC needs, would not know the basics. These evaluations must also be taken into the context of how much teaching of robust core word language has been modeled over time. AAC is a new language for many students and exposure over a short period of time is not enough. Your analogy to Picasso was exactly correct for Maya. Additionally, children who have not had the teaching that Maya has had also have the educational right to in-depth teaching of AAC before making decisions. We do not deny books to children who can not read, or pencils to children who can not write-- we teach. Always presume competence and teach, teach, teach.

Liz said...

I love your stories of advocacy! You are an inspiration.

J Griffith said...

Dana - I always enjoy hearing about your advocacy, and share your struggles and triumphs with many of my friends. We are all fellow travelers on the journey of "Special Needs Parent" and you are a great support and inspiration for many, so I just want to say "thank you."

To Debbie Downer - Wow. It is apparent you neither have children old enough for school nor have children with special needs. I hope you don't have to travel that path, but if you do, good luck getting support or services from your private institutions. Yes, we often have to fight to get our kids the support they need, but not always. Yes, general education teachers are under-trained in special education needs, but generally speaking, Public school teachers are have much more education and training than their private school counterparts, who often do not require even a basic credential to teach. As a professional educator AND a parent of three children with rather diverse special needs, I can say your attitude of dismissing an entire system based on . . . well, I'm not sure what the basis for your opinions are . . .but your attitude is part of the problem.

LTux said...

I am floored by how similar your recent experience is to my own and yet how different. We do not have the fight of assistive tech, Ty is a speaker (sometimes I'd like him to be quiet actually). But we do battle constantly over ability. Sadly, our fight seems to be the opposite direction. Ty is what they like to call a "tweener". He is not "obviously" disabled "enough" to "easily" place him an SLC classroom but he fails horrible in the overwhelming environment of a mainstream classroom. The gatekeeper in our story wants to shove him back to mainstream next year. We've had one pretty good year (not spectacular, but pretty good) in the SLC room...his first good year in 3 and they think he's magically ready to head back to an environment that destroyed him. The assessment that brought this conclusion about was his Intelligence Eligibility testing...an IQ test. The gatekeeper insists that it is standard protocol to drop the lowest 2 scores when there is a large discrepency. Essentially proving her to be right and the rest of us to be wrong and therefore showing he is intellectually "able" to handle the mainstream classes and acdemics. I want my son to be those higher numbers, more than anything! I'm not the type to fight for reducing his intelligence but I am also not going to steal services from him that would help bring those scores up simply to make myself feel better about giving my, obviously, bright, fun, loving little boy a low IQ score.
I truly believe that years of focusing on the cost of these children and the services needed to care for their needs in the classrooms have left the gatekeepers blinded to the actual needs of the kids. I had to laugh at you recalling the conversations that most people hear when they even mildly disagree...that exact sentence was said to me...we can do more evaluating at the beginning of the next school year, before the next IEP. What isn't said outloud..."so we can see if we can prove that we are right in a way that you will accept." So more testing, more classroom interruptions, more evaluations all to prove that the low scores in the first round of testing were wrong and the high scores that they wanted to keep, are the right ones. After questioning their motives and requesting information about the types of tests and evaluations they would be doing, along with the results and backup from the original tests...the gatekeeper has suddenly stopped responding to emails. Go figure.
My point...the gatekeepers are everywhere, not just in the speech rooms or OT rooms...and they aren't always trying to dumb our kids down...some are simply pushing the kids through the system, regardless of what they learn, the easiest and cheapest way they can. I am always so inspired by you and your fight for Maya. You are such an amazing mom and advocate for her...it is truly no wonder she can accomplish so much on her own...she has a great rolemodel!

Katy said...

I currently work as a one-to-one para for a preschooler with complex communication needs. I noticed that you said *most* of these gatekeepers are SLPs; I'd love to know what the other ones are. I can't figure out how to train as an AAC specialist without becoming a SLP, silly as that sounds!

Cathy Ballou Mealey said...

Standing ovation!!!

Anonymous said...

Just so you know, I am an SLP and a "gatekeeper" as you term it. I work for our local school system and while "downer" has a point that budgets are indeed tight, we as SLPs are taught to hold the wellfair of the child as highest concern. Money will find its way to my student if I push for it.

I read this post angry and cheering you on all the same. As an SLP I am frustrated that you went through such a hard experience to get your daughter her device. At the same time, I can only hope that I can one day fight tooth and nail alongside a parent in a unified front, just as you have done alone for your daughter.

Finally, as an SLP I hope that you view my profession as much more than that of "gatekeeper", for that is only one small part of my job. Please don't think that all "gatekeepers" are closed-minded.

Respectfully,
Lauren

Anonymous said...

Hi!

I too am an SLP, but I do not work with children. I found your blog when searching for more info on DynaVox for one of my adult clients.

I found your story very interesting. I feel the SLP evaluating the child really was in error by not including your input in her report. When doing my college externships in early education, we often evaluated the child in their own home, and parent input was integral to the report writing. The SLP may be an "expert" in AAC, but you are your child's expert!

I also found it strange the SLP was so concerned with your child using proper grammar over spontaneously communicating thoughts, feelings, and ideas. Based on what I have read about your daughter's communication level, I personally think communication and interaction should be stressed rather than grammar.

Is there any way you can request a reevaluation? Perhaps even done by a different SLP and in both school and home? At the very least, could an addendum be added to the evaluation with your input and viewpoints?

I haven't read much into your blog, but I hope you are seeking out private speech therapy if you are able!

Like I said at the beginning of the comment, I do not work with the pediatric population. However, I hope my comment helps!

Best of luck!

Crissy said...

You are amazing Dana, and such an inspiration.

Melissa M said...

Thank your for the pep talk, Dana! I, too, am a parent of a child who was quickly donned a TechSpeak, much to my dismay. I was nervous about it, but I have just recently joined the group of parents who have "gone rogue" by getting my son an iPad and an AAC app. I need all the support I can get!

I so appreciate your candid descriptions of the NYC DOE evaluation process. It's ridiculous, and they are just as strapped for cash as any other department so they are not to be trusted.

lucas kyrstyn said...

Excellent post, amazing writing, inspirational actions!

Found you via Love That Max, will be reading tyjhe rest of your posts when my little people (actually not so little anymore) go to bed!

Take care

Lucas

Catherine said...

So what is the end result here? Will the school use the device that Maya is using at home and the one that you know is the best for her, or will she have to learn to use what the school wants to use?

I get the feeling that those at the school are more familiar with a certain device and would rather teach all of the children to use it, than to learn what each child uses. Is that the issue?

Sophie's Trains said...

I am so, so happy to find your blog. My daughter Sophie has bilateral perisylvian Polymicrogyria, which we just found out about (we thought she was autistic for over a year). We are now looking into AAC in earnest. I love all the wonderful resources you put together and I will keep coming back to learn more.
As far as the gatekeepers go, I have no words. Maya is a wonderful communicator. I wish you luck with dealing with them. We are still not there yet, Sophie is due to start a special-needs nursery school in sept. (she is 3).

thara ravishanker said...

To Debbie Downer,
I really hope you never have a special needs child ever. Your sentence- I never understand when people have high (or even moderate) expectations for school systems, regardless of ability of the child, if that makes any sense. No it does not make sense at all. What's more it shows you do not believe in the child.