“Until there is a cure, technology is the cure.”

(Steve Gleason, on living with ALS and utilizing a speech generating device.)

The Steve Gleason Act of 2015, recently introduced in the House and the Senate, is a good first step toward ensuring continuous Medicare coverage for individuals who qualify for Durable Medical Equipment (DME) serving as speech generating devices (SGD) and for accessories that are needed to effectively utilize such devices.  If passed, the Act will be effective July 1, 2015.  We urge you to contact your representatives and senators to support the bills. The House bill is H.R. 628.  The Senate bill has not yet been assigned a number.

The Center for Medicare Advocacy (the Center) is pleased to have participated in the crafting of the Act’s language in collaboration with Team Gleason.  The Center also recognizes contributions toward the Act made by the MIT (Medicare Implementation Team), ALSA (the ALS Association), ASHA (American Speech and Hearing Association), and many SGD manufacturers.  The Act seeks to correct a 2014 regulatory change that currently bars continued payment and access to SGDs if the individual enters a nursing home or hospice – times when they are most needed.

Until April 2014, Medicare bought SGDs for individuals who met coverage criteria.  Since that date, Medicare no longer buys SGDs for individuals.  Instead, Medicare makes SGD rental payments for the first 13 months of an individual’s SGD coverage.  The consequence of Medicare making rental payments for the device, rather than paying for the device outright, is that if a person goes into a facility such as a skilled nursing facility, or enters a hospice program, the Medicare rental payments stop and the SGD supplier has the right to reclaim the SGD.  In many cases, this leaves the individual unable to communicate at a most vulnerable, when communication regarding their health care needs is vital.

Suppliers “reclaim” SGDs because of a “place of service” limitation in the DME section of the Medicare statute.  (The Social Security Act, Section 1861(n)).  After an individual is admitted to a facility, or even an in-home hospice program, under a “bundled payment” arrangement with Medicare, the SGD should, theoretically, be provided by the facility or hospice program as included in the bundled payment.  There are, however, problems with this:

  1. SGDs are uniquely programed to each individual.  These are not “off-the-shelf” devices that a facility or hospice program can provide; and
  2. Most facilities and hospice programs do not have SGDs and even if they do have them, those SGDs are not effective for the individual user’s needs.

Since the April 1, 2014 effective date, changing Medicare SGD payments from purchase to rental, the Center has heard heartbreaking stories of SGDs being taken from individuals after they enter facilities or hospice programs, leaving them unable to communicate.  The Center has also heard that facilities sometimes leave the SGD out of the patient’s Plan of Care.  When the Plan of Care does not list the SGD, the facility is not responsible for providing it, but the place of service limitation in the Medicare statute still precludes the rental payment from continuing.

The Steve Gleason Act of 2015 seeks to reinstate Medicare SGDs as purchased DME, rather than rented.  If the SGD is purchased for an individual, it will stay with that individual, without fear that the SGD will be “reclaimed” if a person is admitted to a facility or hospice program.

The Center recommended that the Steve Gleason Act of 2015 provide coverage of devices that “serve as” SGDs.  This will allow new generations of devices, that may not be called SGDs, but that provide the ability to perform a similar communication function, to be covered by Medicare.  This language was included in the Act, as introduced in the House by Rep. Cathy McMorris Rodgers (R-WA) and in the Senate by Senator David Vitter (R-LA), along with another recommendation from the Center to include language “for accessories that are needed to effectively utilize such devices,” such as eye-tracking recognition tools.

The Steve Gleason Act of 2015 does not address all of the coverage problems with SGDs.  Medicare is in the process of revising a National Coverage Determination (NCD) that addresses coverage for an SGD that has the capability of other-than-speech functioning.  This is sometimes referred to as “unlocking” the device for phone, internet, texting, word processing, and other capabilities.  In December 2014, Medicare received over 2,000 comments on this NCD process.  The Center has offered to review Medicare’s recommendations on the NCD.

The groundswell of support for SGD coverage, and for the people who use SGDs, has become apparent, encouraging the Medicare agency and Congress to seek ways to combat the loss of coverage.  It has taken a great deal of effort and thousands of voices to bring attention to, and action for, those who need SGDs.  That, and leaders such as Steve Gleason, who fights the good coverage fight while using an SGD himself.   It is very fitting that this Act bears his name.

February 5, 2015 – K. Holt