"This is important stuff..."

Pinkessa
Originally uploaded by Citizen Rob

I recently saw a post on an AAC users forum by an actual end user, in which she expressed her frustration at the process for getting a speech device approved for her own use. In order to even see and evaluate a device, she was required to have an evaluation performed by a licensed clinician. This isn't unusual, particularly when outside funding is being secured. It makes perfect sense on paper. In reality, a number of obstacles related mostly to human ego and a lack of understanding seem to complicate the process almost every time.

I could write a book about those obstacles. Oh, wait. I already did.

The responses to this post seemed to fall in three categories. There were users or parents of users who agreed with the original poster's frustrations. Then there were a few professionals who agreed on some level that the system has serious flaws.

There were a number of professionals who came on to defend the system. I don't have anyone's permission to quote them directly, but much of it boiled down to a few basic points:

• A qualified professional needs to assess the user's capabilities and needs before recommending appropriate products.

• If someone else is providing the funding for assistive technology, they should have a right to determine whether those resources are being spent responsibly.

I know this is probably a little uncool, but I'm going to quote a few lines that I think are relevant to the discussion, from both sides of the issue.

"When spending the limited resources for medical devices and assistive technology, those who are spending the money have a responsibility to get the 'most bang for the buck.' It doesn't make sense to provide a high-end device like Eco or Pathfinder for a person who has limited communication ability..."

"In an ideal system, the consumer could try out numerous devices and get the advice of an SLP as a consultant as needed. Sadly the system is set up not to let the consumer do the research and testing and make the decision but to put people in the middle -- a doctor to determine if a device is 'medically necessary' (as if anyone would think that access to communication might not be medically necessary, although this does happen sometimes) and a speech language pathologist, for instance, to be responsible for approving the use of funding for a given device. It is a medical model approach that provides accountability for the use of funds, and it is not a truly person-centered approach."

"I know it seems like you should be the one to choose the device you want — and I agree that you should have a big say in the decision — but from the point of view of the funding agency, the device has to meet your needs first. Then all things being equal, which of the devices that meet your needs do you like best?"

(An actual end user, in response to that one)
"As an American who believes in capitalism and consumer rights (along with other freedoms), the consumer should not have a 'big say' in the decision, they should have the FINAL say in the decision. I see absolutely no reason why a vendor should not allow a consumer to demo any device they want - that is the WHOLE POINT of being a sales rep - to be able to sell a product - and then if the consumer decides he/she likes the device and it is the best for their needs and desires, they work with the clinician to secure funding. A clinician should never be the one to tell the consumer which devices to pick from, unless they are asked for advice - or unless they think the consumer may be interested in another device the consumer is unaware about."

"The discussion appears to be giving a lot of attention to explaining why things are the way they are and justifying them through some interesting examples. Perhaps it would be helpful to consider this perspective: self-determination, which comes from within the individual and is a driving force for growth and progress, is fostered by leading one's life and thus 'having the final say' in issues small and big."

Anyway, you probably knew this was coming, but I contributed a little somethin' somethin' to the discussion. You could probably also predict that my post would be verbose and sanctimonious. If so, you'd be two for two.

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But here's the thing. When you talk about someone having "limited communication ability", who's determining those limits? You? An SLP? A doctor, or an educator? An independent evaluator? Most importantly, is it someone who has a direct hand in determining how the money is spent, and how much there is to spend?

A lot of you know my family's story, but here's a "short" version. We have a binder full of reports by professionals, mostly from about five years ago) who were ostensibly objective in their evaluations of my daughter's lack of speech (due to polymicrogyria). These reports document, in the most authoritative terms, the limits of her communication abilities and the future we could reasonably expect for her. They establish that her reading skills would be limited, that she would probably never be able to write by hand, and that she would almost certainly remain an unsuitable candidate for inclusion because of her communication issues and her cognitive deficiencies.

There are two points I wish to make about these evaluations. First of all, they were wrong, almost every one of them. She now attends a program where she spends part of her day in an AAC-centric classroom and the rest of the day in a mainstream, age-appropriate classroom with the help of an aid and her speech device. There was no need for her ARD committee to override the TAKS reading test results (the Texas implementation of No Child Left Behind) to allow her to move on to the fourth grade, because she passed that test on her own. And every time we do a book signing event, she is there to sign her name, in chunky but clear letters in pink pen, at the top of the title page. If she DOESN'T graduate from high school, it will be because she chooses not to, not because of these predetermined limitations. Every professional evaluation that was done on her less than five years ago got it wrong. Every single one of them spoke, with utmost professional confidence, of her "limited communication ability".

The second point I need to make here is the crux of the issue. It is simply this: the professionals who made these evaluations were responsible for determining the appropriate AAC device for my daughter to use. They had the ultimate purchasing power, and their "recommendations" were final. When we determined that a high-end device (in our case, the PRC Vantage) showed the most promise for her, our request was overridden. The school chose to purchase a much simpler device with a limited vocabulary (and from another company, one with which they already had a professional relationship). They made a choice that, to them, gave them "the most bang for their buck".

And the only reason we were able to decline their purchase and go it alone was that I had been writing about my daughter for years and was able to do a successful online fundraiser. I had access an independent resource that very, very few parents have. And the only people who were willing to fight for her basic human right for a high-end device that MIGHT have turned out to be appropriate for her future needs were her mother and I, and the PRC rep whom we contacted and met with INDEPENDENTLY, because our daughter's team at her school would not facilitate that meeting for us.

My daughter is moving forward. She's excelling in school and she's communication successfully. Even her verbal speech is improving, despite an almost universal determination five years ago that it would never be a viable form of communication for her. And she's having this success because her AAC device has given her unlimited opportunities, and she's been allowed to determine exactly how limited her communication abilities are.

I have been speaking to hundreds of parents and SLPs and teachers over the past year and a half, and the thing that strikes me again and again is how many of them have similar stories. Professional underestimation of the capabilities of nonverbal individuals is epidemic. From these conversations I've had, I can say one thing with absolute certainty. The biggest problem in assistive technology funding is NOT that people are spending too much money on high-end devices that the end user will never be able to fully utilize.

If you are spending someone else's money, then yes, you have a responsibility to do so wisely. You need to research your options carefully, and you should have access to professionals who can guide you when needed. But should receiving money from another source mean accepting limits to independent access to vendors, or any other "controls" that take the final decision-making authority away from the end user (or their parents, as is often the case)?

With all due respect to [names redacted], you are both coming at this from professional perspectives. For many of us out in the trenches, the reality is that industry professionals have let us down, often on multiple occasions. And that's fine, in a way. We're all human beings, and every person with a disability has unique needs and limitations that can be hard to identify. We understand when you get it wrong. But you need to understand that when you DO get it wrong, it is someone else, someone non-professional but entire invested in the issue, who has to make the course corrections in order to get things back on track.

And we're fine with that. Whether we are parents of those AAC users or the end users themselves, we know that ultimately, it is our problem and our responsibility to get it right. But if someone else is writing the checks and making incorrect decisions because of it, then ultimately their "help" isn't terribly helpful. And when the decision to choose frugality over possibility comes at the beginning of the whole process, when a successful implementation of assistive technology might very well make the difference between a user who will one day live independently and one who will spend a lifetime receiving expensive care from the state? To me, that is the very definition of using limited resources in a very unwise manner.

I'm sorry to go on about this at such length. But I'm not that sorry, to be honest. This is important stuff. It's not just about economics. It simply CAN'T be.

Robert Rummel-Hudson