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.

Tuesday, March 18, 2014

April Fools!

The Medicare medical equipment rules are changing effective April 1.

Here goes...

Augmentative communication devices will be rented for 13 months rather than being purchased.  Not a bad idea, it seems.  Technology improves so quickly these days that 13 months can make a device obsolete.

Whoops... As my grandmother would say, the road to hell is paved with good intentions.

If I understand the new rules correctly, in 13 months if that device has turned into a technical boat anchor, it has become the boat anchor communication tool of the person with ALS.

Oh, and the rules limit devices to things that are strictly for augmentative communications.  In someone's infinite wisdom (that drips with sarcasm in case you're missing it) it excludes devices that can do other things like connect to the internet or run an app that provides the ability to order supplies or read a book or find a clinical trial or question a provider's Medicare charge.

Why would Medicare want to stop people with ALS from talking to people who aren't standing in the room.  The internet really works for those things, folks!

Who hasn't been amazed with the things that a tablet or lightweight new computer can do at a fraction of the cost of some clunky medical equipment devices?

Who wasn't thrilled with Steve Gleason hosted a Super Bowl ad for Microsoft using readily available technology that cost a small percentage of the cost of one of those boat anchor devices?

And  would a person with ALS be eligible for Steve's communication hardware and software under Medicare rules?  No!  Would a person with ALS get stuck with something far more expensive than Steve's $4000 Microsoft Surface-based setup and be wed to far inferior technology? Yes.

All I can find online that addresses these changes are organizations telling people to hurry up and order their devices before April 1.  Where is the outrage and aggressive advocacy to keep this from making taxpayers the fools starting April 1, 2014?

p.s. There are reports that Medicare is applying the new rules already.  So for some reason, they're anxious to spend more for less.  Taxpayers lose. People with ALS lose. Who wins? The boat anchor industry?  We don't measure value by the pound when it comes to smart devices!


  1. And extremely significant in these changes is the fact that if a person with ALS opts into hospice or is forced into a hospital, the augmentative communication device does not go with him or her. Of equal concern is that the highly personalized power wheel chairs do not go with the patient, either. This equipment isn't quite like the toothbrush or comb that hotels keep for guests who come and go. The concept of a person with ALS losing a communication device upon a move to hospice is an inept combination of cruel and uneconomical.

    Power wheelchairs are on the same road to hell that was paved with good intentions.

  2. Does this mean if we need a chair, we should order it before 4/1? We will be needing a PWC very very soon, so we are doing the research now.

  3. I'm not an expert, but my guess is that it would be impossible to get a good, customized chair measured, ordered, delivered, and fitted by Apr 1. This whole situation is just nuts.