New CMS Regulations May Silence Thousands

UPDATE: CMS has pushed the implementation date for these changes to December 1, 2014.  However, the Congressional Letter must be signed by next Friday, September 5! 

Please ask your representatives to read and join the Dear Colleague Letter.

On September 1, bureaucrats at the Centers for Medicare & Medicaid Services (CMS) will change the rules surrounding "Speech Generating Devices" or SGDs.  These changes make the devices less useful, more expensive to the taxpayer, and explicitly remove them from patients when they are admitted to hospitals, nursing facilities and (horrifically) hospice care.

Please consider joining us in trying to prevent them from going into effect and harming our neighbors with ALS, Autism, genetic disorders, stroke and more.

This decision offends me on so many levels its hard to list them.   The most insulting is the idea that we would choose to remove a device from someone who is entering a hospice facility.  Imagine this scenario for a moment.

Alice is 67 years old and suffers a stroke that impacts her ability to speak.  After months of rehab, she has learned to use an SGD to communicate with her family.  The device (funded by Medicare) has been "trained" for her: her rehab team has adjusted it to fit her needs by attaching switches and setting up the vocabulary and she's worked for days and weeks to get where she can at least have some control over her life and a margin of independence.  She can welcome her visitors and tell her family she loves them.

Sadly, Alice has a setback: perhaps another stroke, perhaps cancer, but for whatever reason, her prognosis dims to the point where hospitalization and eventually hospice care are needed.  This is likely the moment in her life when her words are the most valuable. Her family will cherish anything she says, and she will get to say goodbye.

Under these new rules, Alice would have to turn in her SGD upon admission.  The argument goes that, like walkers and feeding pumps, SGDs are Durable Medical Equipment and "should be provided by the facility."  But, unlike walkers and feeding pumps, this is Alice's device.  It has been configured and modified specifically for her and she, in many ways, has been trained to use it - it has become unique.  Even if the hospice facility has an SGD available, placing it in Alice's hands and asking her to speak with it will produce nothing but justifiable rage and frustration.

New Audible Speech Limitations

Another change coming is the elimination of devices that do anything but produce audible speech.  A bit of technical background is helpful here to understand why a techie like me is infuriated by this.  Bear with me, I think it's worth understanding.

Over the last few years, most SGD manufacturers have moved to a platform like Android (or Windows or iOS) that already has the basics functions of handling the touch-screen, powering the speaker, etc. "baked in."  Speech-specific software and hardware like hardened case and switch ports are then added to make the SGD.  You can see a similar trend in E-Readers.  Your Kindle or Nook is actually an Android tablet that Amazon or Barnes and Noble have added their software and (perhaps) nice paper-white screen to let you read their books.

SGDs based on platforms like Android are more powerful: they can access the internet, send text messages and emails, post to blogs and download updates to their software over the internet.  They are also less expensive: manufactures don't have to develop the low-level functions nor do they have to constantly improve them - they can just update their Android version and focus on making their speech software and hardware great.

Under these new rules, any device that is capable of doing anything other than producing audible speech is no longer allowed.  Even if that other functionality is disabled or hidden, the device will not be funded.

Consider the real-world impact of this change:

Betty is a 19 year old student with autism.  She uses her SGD (funded by Medicaid)  to speak and with the new LAMP-style systems can now express herself, not just make requests and answer questions.  She has opinions, irritations, joys and a point of view understandably very different than you or I.  She's learning at a young age that she's going to need to be a self-advocate, and she's able to do that through her device.  

She has spent years getting to this point and her family is incredibly proud of her. 

However, she is also like most teenagers in that the majority of her communication is silent.  She likes it that way--she likes the privacy.  She uses her device to send text messages and to post to Facebook.  Because the device is based on Android, those modes of communication are possible, but so are so many other things: she uses the built-in camera to share a smile with her dad when he's out of town and reads her books on the Kindle app.

After these changes, Betty will have to trade in her device for one that is dumbed down, and incredibly, more expensive to build.  This isn't hyperbole or a possible outcome, Saltillo, an excellent SGD manufacturer, has created (at great expense) stripped-down versions of their devices that they have had to gut until they only generated audible speech.  You can see both the normal and  Medicare/Medicaid versions here.

I seethe when I think about what that means: Betty, who has finally found a way to express herself after years of work, has just been silenced.  If she wants to talk to her dad, she'll laughably have to hold her SGD up to her cell phone so he can hear it!

Frustrated doesn't begin to describe it.

What does that mean about the value we place on the views of people like Betty?

Why would we do this as a society?

This is not "fraud prevention," as CMS has produced no evidence of widespread fraud after repeated requests.  The program has stringent definitions of "medically necessary" and the device must be prescribed by a doctor or SLP. 

It's not "cost cutting" because there's no incentive for SGD manufacturers to reduce their prices - in fact, it will increase them!  The only way this saves money is to remove devices from the hands of people who need them.  Plus, even if you chose to de-fund every device you'd save a few million dollars while silencing thousands of citizens--how can that be effective?

At first, I thought there might be "cronyism" behind this, where one vendor was effectively cornering the market.  However, every vendor I've spoken to, from the high-tech SGDs like Tobii/Dynavox and PRC/Saltillo to the low-tech SGDs that LessonPix.com can make templates for think this is awful.  It's unanimous, and there are no winners here.

The only slightly plausible argument I've heard is that politicians and administration officials don't want to be "seen as giving away free iPads."  First, the lives of these people is more important than political "optics."  But, if that's what your worried about, strengthen the "medical necessity" requirements, don't dumb-down the devices..

Help Us Stop This!

Please help us try to stop this before they go into effect (or roll them back quickly).  There really are things you can do, and they really can make a difference.

Tara Rudnicki from ATIA and Tobii/Dynavox has written a great post of how you can involve your elected representatives.  Senators and Representatives from both parties have written a "Dear Colleague" letter to gather support within the legislature to put the brakes on these awful regulations while they are reviewed.

With the proper motivation from the citizens in their districts, this can happen.  Here are some tips:

1. Find your House Member and Senators and write or call them all.  If you do nothing else, ask them to sign the Dear Colleague letter titled “Ensure ALS Patients Retain Access to Critical Communication Tools Ensure; Join letter to CMS urging clarification of recent Speech Generating Device policies.” (They will know how to find it & sign it)
2. Tell them about people you know personally or that you admire who use AAC and SGD devices and how their views have impacted you. 
3. Tell them this is a perfect example of government at its worst: bureaucrats making decisions that hurt the vulnerable and benefit no one.
4. If your representatives lean conservative, point out that this does nothing to reduce spending and that by NOT reigning in these policies they are complicit in silencing those few that government should be helping and that the changes will spend our tax dollars less effectively.
5. If your representatives lean liberal, point out that the views of a minority who have rights and points of view are being silenced.  We should be celebrating that these technical improvements have given them a voice in our society and listening to them, not limiting them based on regulations with no up-side.

Thank you for your patience and for reading this rant.  Thank you even more for your help.  If you know of any way we can do more, please reach out to me directly at bill@lessonpix.com or @LessonPix on Twitter.

Sincerely

Bill Binko
LessonPix.com