President Obama Signs the Steve Gleason Act Into Law

July 31, 2015 – On the evening of July 30, 2015, President Obama officially signed The Steve Gleason Act. The new law helps protects patient access to medically necessary Speech Generating Devices (SGDs) for individuals with communication disabilities, including ALS, Cerebral Palsy, spinal cord injuries, and Rett Syndrome. Specifically, the new law will remove SGDs from the Medicare Durable Medical Equipment (DME) payment category as a “Capped Rental” and provide coverage of eye-tracking technology for patients who rely on this method to access and operate covered SGDs. These amendments are effective beginning October 1, 2015 through October 1, 2018.

The passage of The Steve Gleason Act is a monumental step for Medicare patients who rely on assistive technology to communicate with their loved ones and caregivers. The reform serves as acknowledgement to the community of the equal importance of the right to be heard. The presidential signing also comes just a day after the Centers for Medicare and Medicaid Services (CMS) updated their coverage policy for speech generating devices.

We thank the Senate and Congress for their unanimous support of the legislation and to President Obama for helping to secure a voice for the thousands of individuals who rely on speech generation technology. We are equally thankful to our partners in the coalition for their dedication to make this legislation possible:

  • Team Gleason
  • Team FrateTrain (Pete Frates’, advocacy organization)
  • ALS Association
  • American Speech-Language Hearing Association (ASHA)
  • The Center for Medicare Advocacy
  • American Occupational Therapy Association (AOTA)
  • United Spinal Association
  • Assistive Technology Industry Association (ATIA)

House Passes the Steve Gleason Act of 2015

July 15, 2015 – On Wednesday, July 15, the U.S. House of Representatives passed The Steve Gleason Act of 2015 and now only awaits Presidential signature in order to become law. Through the advocacy efforts of so many in the community, this step will help patients by removing SGDs from the “Capped Rental” category until October 1, 2018 and by clarifying Medicare coverage of eye-tracking technology to access and operate covered SGDs in order to address the onslaught of Medicare denials for eye tracking accessories over the last two years. Because of our commitment to patients and the families and caregivers of SGD users, Tobii Dynavox has dedicated tremendous resources to this legislative effort and will continue its work to ensure that Medicare rules support patients. This work is going to involve protecting SGD users from the negative impact of the “Capped Rental” designation after October 1, 2018, and your involvement will be crucial in this effort.

Click here to read the official press release from Tobii Dynavox regarding the U.S. House of Representatives passage of The Steve Gleason Act.

Tobii Dynavox Continued Advocacy on Behalf of SGD and Eye Tracking Users

In addition, as part of its effort to ensure patient access to these important devices, Tobii Dynavox is also continuing its dialogue with CMS to ensure that the language of the Medicare National Coverage Determination (NCD) for SGDs allows patients to utilize the full functionality of their devices, commonly referred to as “unlocking.” Tobii Dynavox submitted comments in response to the CMS draft revised NCD for SGDs. Tobii Dynavox is pleased with the draft and will work with CMS to ensure that the finalized version protects patient access to SGDs and the functionalities requested by patients. CMS expects to release a final revised NCD this month, and we are cautiously optimistic that CMS will release an NCD that is patient-centric and will allow patients to access the latest technological developments available to them. We will also continue our discussions with CMS to address the massive backlog of eye tracking accessory denials.

Today, however, we applaud the action taken by Congress and the President to ensure that the Medicare program supports SGDs users. We are equally thankful to all of you who have taken time out of your hectic lives to tell us your stories and contact your members of Congress. Our work will continue, but because of your efforts, we can consider today a considerable achievement demonstrating the power of making sure that everyone has a voice.

Background

Recent Medicare changes are drastically reducing or totally inhibiting access to the technologies that provide people living with disabilities the ability to communicate. These are some of Medicare’s most vulnerable beneficiaries.

Sweeping changes have been put in to place in 2014. The critical issues at hand:

Capped Rental

As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGD’s) used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments, when they enter a health care facility, such as a skilled nursing home, or hospice. Taking these highly specialized devices from this patient group leaves them no way to communicate at the patient’s most vulnerable moments and at a time when medical attention is critical.

Eye-gaze Access

Currently, Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS. Both a doctor’s and speech language pathologist’s evaluation is necessary and documented in order for the patient to receive the benefit. However, Medicare continues to routinely deny eye-gaze access even when it has been deemed medical necessity by two trained and certified medical professionals. The appeals process is now backlogged for years in the Medicare system. During that time, those who have been diagnosed with ALS have precious few months before symptoms onset that limit their ability to speak while awaiting their appeal outcome. After years of waiting for an appeal to Medicare, the eye–gaze coverage is routinely allowed, but individuals may have already passed without the opportunity to communicate with friends and loved ones or participate in their own care during the final stages of their lives.

Unlocked Devices

Since September 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate and have contact with loved ones and medical professionals who are outside the patient’s home. Medicare has stated that it will not allow individuals using Medicare-provided speech generating devices to use their own funds to “unlock” the devices, even though this is done at no additional cost to Medicare. The ability to “unlock” devices allowed beneficiaries the ability to communicate and participate beyond the confines of their rooms through email, environmental controls, internet, and text messages. Since September 1st, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of device. This change terminates any direct private communication to the doctor, therapist and clinical teams via email, from caretakers via text and even first responders in an emergency situation. This is not part of the current legislation but something we are in active discussion with CMS to change in the future.

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