Call to Action

Hey all! As you may have seen on my Facebook, there have been some really devastating changes made by Medicaid and Medicare to policies regarding communication devices for those who are unable to verbally speak. These changes are upsetting not only if you are an SLP, but also if you are a decent human being, concerned citizen, and/or frugal taxpayer. See the photo below for the short explanation:

SGD

Everyone has been dumping ice water on their heads left and right, and while that has done some great things to raise awareness and encourage/pressure others into donating money, there is a really pressing issue at hand that you can devote your time and energy to.  I promise it will take no longer than videotaping your ice bucket challenge.  I’ve drafted a letter to my representative and Senators and will be emailing them tonight.  I have read different information on when these elected officials must receive the request by – it is either Monday, August 25, or Wednesday, August 27.  It may even be later than that, as CMS changed its deadline for the changes from September 1 to December 1.  So, regardless of when you read this, please please please contact your representative and Senators!  Below, you will find my letter.  I have put a strikethrough on the areas that you may want to omit or change, depending on your job or relationship to this issue.  Other than that, the core information is all in there.  Let’s celebrate the fact that we live in a democratic society and are able to talk to our public servants about our concerns!  And if you know anyone who might be interested in sending this letter (i.e., anyone who has a soul), please pass it along!

Here are the links you need to find your elected officials:  Representatives and Senators.  Simply copy and paste the below letter, edit out or change the information that has been crossed out, and hit send.  Easier than an ice bucket challenge and you don’t even have to leave your couch to do it!


Dear Mr./Ms _______,

I am writing to you as a speech-language pathologist and concerned citizen about upcoming changes to policies regarding funding of speech generating devices.  As you may know, the Centers for Medicare and Medicaid Services (CMS) recently came out with upsetting policy changes have significantly limited a Medicare beneficiary’s access to speech generating devices (SGDs) and SGD accessories.

Speech-generating devices, also known as voice output communication aids, are electronic augmentative and alternative communication (AAC) systems used to supplement or replace speech or writing for individuals with severe communication impairments, enabling them to verbally communicate their needs. Only speech-language pathologists may recommend SGD devices for Medicare beneficiaries based upon a formal evaluation.  People who benefit from SGDs include individuals who have autism, ALS, genetic disorders, stroke, and many other diagnoses.  CMS has delayed implementation of the coverage determination until December 1, but Medicare and Medicaid may no longer cover the cost of many SGDs after this date.  The changes can be broken down into two basic components:

Audible Speech Limitations

One change that will be enacted after December 1 is the elimination of devices that do nothing but produce audible speech.  This means that if an individual has capabilities on his or her device such as access to the internet, this device will no longer be covered by Medicare/Medicaid.  Access to the internet via an SGD is important for several reasons.  First, it is how most SGDs are now manufactured; the device uses a platform such as Android or iOS and has many features (e.g., touch screen) already “baked in” to the device.  The SGD software is updated over the internet, much like a smart phone is.  With the new changes, SGD manufacturers would have to completely change the software, hardware, and functions of their products, meaning that the changes will do nothing to ensure that SGDs are less expensive for taxpayers.

The other reason this change matters is that much of our communication is now done online or over the phone.  If an SGD user holds a job at which communicating via email or phone is essential, and devices that allow him or her to do this are no longer funded, he or she will no longer be able to function on the job.  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.  The SGD user will not even be allowed to purchase these capabilities with his or her own money.  With these changes, SGD users would have to trade in their current devices for a brand new device that is dumbed-down and, incredibly, more expensive to build.  This is both a quality of life issue for SGD users, as well as a financial issue for taxpayers and SGD manufacturers.

Removal of SGDs from Users

Another change that will go into effect on December 1 is removal of SGDs from patients when they are admitted to hospitals, nursing facilities, and hospice care…just when they need their voice the most.  The argument for this change is that, like walkers and feeding pumps, SGDs are Durable Medical Equipment and should be provided by the facility.  However, unlike walkers and other durable medical equipment, SGDs have been specifically programmed to fit the individual’s needs.  This individual and his or her speech-language pathologist, family, and others involved in his or her care have configured and modified the device so that the individual can best communicate his or her wants, needs, opinions, and questions.  The SGD user has been taught, over the course of many hours and with much trial and error, to use this specific device to communicate with others, and it is unique to his or her needs and preferences.  To place a different, non-specific SGD in the individual’s hands at a time when it is crucial that he or she be able to communicate basic needs and wants is simply cruel.

As a speech-language pathologist, this news alarmed me.  I cannot even begin to imagine what would happen if one of my patients or loved ones were admitted to the hospital and essentially had their voice stripped away.  How would they communicate their basic needs and levels of pain, ask important questions to their doctor, or visit with their family members? This issue not only affects SGD users who are currently funded by Medicaid/Medicare – it has the potential to affect each and every one of us. 

Therefore, I am requesting that, as my elected official, you sign on to a bicameral letter addressed to CMS as prepared by Congresswoman Cathy McMorris Rodgers that would request an explanation for recent policy changes that have significantly limited a Medicare beneficiary’s access to SGDs and SGD accessories.  The letter is titled “Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies.”

Despite multiple meetings with CMS and contractor staff, as well as nearly 200 comments opposing the new regulations, there have been no changes in CMS policy.  Members of the House and Senate are writing to CMS to ask for their rationale on these issues.  I ask that you contact Nick Magallanes at nick.magallanes@mail.house.gov or (202) 225-5107 in Congresswoman Cathy McMorris Rodgers’ office to sign on to this bicameral letter.

Thank you for your support, and thank you in advance for helping to give a voice to those who need it the most!

Sincerely,

________________

 

 

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