ALS and Medicare rules for Speech Devices

There's a story happening with medicare and "speech generating devices," especially those involving eye tracking (of the sort frequently used by people with ALS). I'm trying to figure out where we stand now.

Last Feb,the folks who admin Medicare changed the rules for speech devices (devices in which you push buttons to make words/phrase).

1) One issue involves renting for 13 months (and then owning) rather than owning outright. This is an issue because coverage stops if there's a hospitalization or nursing home stay.
2) They said they wouldn't cover devices that allowed users, with their own money, to add functionality (eye tracking, email, internet, etc).
3) Questions about supporting eye tracking at all.

Some went into effect April 1. Others were to go on 9/1, but now it's been delayed to 12/1.

Here's what I know. There's a congressional "Dear Colleague" letter that can be signed by Friday. Write your congressperson.

Here's some coverage.

Washpo - Medicare spokesperson says nothing is changing.

Plain Dealer - Everything is changing.

I think the real issue can be found here:

People with Medicare will no longer have the option of buying the basic devices outright. Before, insurance would pick up the majority of that cost if it accepted a report prepared by a licensed speech pathologist and signed off by a physician.

No longer will families be able to pay for upgrades (Internet access, newer software and eye-tracking technologies that let people without speech or hand capabilities "type").

There - it's the ability to add technologies that seems to be the problem.

CMS has said:

The new rules are being reviewed, and a final decision is slated for Dec. 1. CMS said in a statement that the agency will “ensure that we are able to review and address issues that stakeholders have raised, including the ALS community’s desire for beneficiaries to have access to devices with expanded functionality.”

ALS groups say:

Medicare had long allowed families to use their own money to upgrade the basic speech-generating devices covered through the program, the Center for Medicare Advocacy said. The policy review, however, seems to make clear that any device capable of being adapted for nonspeech uses such as email and Internet access — as most are nowadays — won’t be covered in the first place.
“We’re very concerned,” said Marlin Seymour, executive director of the ALS Association Central & Southern Ohio Chapter. “If you happen to be an ALS patient, then you want your device to include the ability not just to speak through it, but to do email, use the Internet, turn the TV on, those kinds of things.”

Call your congressperson by Friday.

Other reporting on the issue (prior to the delay to 12/1 for implementation).