ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, May 8, 2014

Today There Is An Action Item for You and for You, Too

Your words and thoughts matter.  They are needed before Sunday.  Please act.  Yes, you.


We saw Medicare rules go into effect on April 1 regarding Speech Generating Devices (SGDs) that just have stupid written all over them.  They do not make sense in the 21st Century.

We have already written about how a well-intentioned move of the devices to rental status has all kinds of unintended consequences for people with ALS.  As our grandmothers taught us, the road to Hell is paved with good intentions.

You perhaps think my use of the word "stupid" is a little much?  I think not.

  • The rental status means than if a person with ALS is transferred to a hospital or hospice, that rental device will not go with the person.  We are moving people into situations where communication is more important than ever, and we take away their right to communicate.  That'll keep them quiet.

  • Devices are locked from internet access.  The bureaucrats say that's an old rule that they should have been enforcing all along.  Rental just makes enforcement all the easier.  Peachy.  Let's unhook PALS from the best communication network known to mankind.  That'll keep those patients quiet.

  • But wait, there's more!  We hear that on September 1, a government bean-counter somewhere will celebrate.  There are indications that devices that include word processing, email, or remote control will not be covered at all.  That will really keep those patients quiet.

  • There have been recent denials of eye-gaze devices.  Evidently some Medicare reviewers say that this is not needed and people use them to play games and surf the internet. Is your blood boiling yet?
Please consider a quick action item if you have ALS, know someone with ALS, or simply care about government getting in the way of common sense.

Please write a quick message telling the importance of Speech Generating Devices to those with ALS. Your letters will be delivered to the Medicare powers that be on Monday by executives from Tobii, the company that has developed much of this enabling technology. The following is from Tobii:

 Here are the kinds of things you should write about. Remember this is Medicare. Use terms like "medically necessary."


How has a communication device changed your life?
What impact has eye tracking had?  How would you function without eye-tracking?
Has eye tracking been instrumental to have them work longer? Stop abuse? Communicate an emergency? Able to communicate with their children? (any other examples?)
What should Capitol Hill be aware of if patients going forward will be denied eye gaze across the board ? What if all claims would have to be appealed on all eye tracking? (CMS appeals right now at three year wait, yes that is not a typo)
How would losing the ability to use skype , email, text, phone , teleconference with their doctors, and internet impact you?
Have you been denied access to a communication device with eye tracking what has been the trail or timeline for process and if possible how have your symptoms have changed.

Please sign your name, town and state and if willing, connection to pALS, age and disability. 

These are just quick thoughts/ideas. You need to think like the government. Why should they care? We need the patients & families to remind them who they were before the disease, who they have been able to be after and why communication is so so critical. 
We are asking for the letters by Sunday and from people throughout the country. They will be hand delivered to CMS. Please email your letters to: stephan.floyd@tobiiati.com


Please submit something.  It doesn't have to be elegant.  Direct is always better. Please act.  It's up to you and you and you and me.  Let's send them to Washington with a flood of messages, many of which will not be possible to write after September 1.

Thanks, all.  Please help spread the word.  Friends and their friends can speak to how important it is to be able to interact with those with ALS.  Any American taxpayer should speak up. Yes, you.

1 comment:

  1. It's about time for the US Government to return to serving the population. Clearly these changes limit the ability to provide equal accessibility to every member of society. Why is the government so concerned about whether or not a disabled is able to access the internet, their email, or even play games for that matter. The people that need these devices are in a definite state of need. Put yourself in the the peoples position before you make a decision.

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