Assistive Technology Industry Association Request for Action

August 22, 2014

Act Today to Ensure People with Severe Disabilities Have the Ability to Communicate

Recent Medicare changes are drastically reducing or inhibiting access to the technologies that provide people with disabilities the ability to communicate.

ACT TODAY: Contact Your Representative and Senators and ask them to sign the letter "Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies."

We need you to act today! Your senators and representatives must sign the letter by Wednesday, August 27.

Find your local representative:
Find your senators:

Take action to preserve access to speech-generating devices for those who need it most. We ask that you please contact your local House Representatives and Senators and ask that they sign a bi-partisan, newly introduced letter to Marilyn Tavenner, head of the Centers for Medicare & Medicaid Services (CMS) to address these changes.

The "Dear Colleague letter" is titled "Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies."

Here is more information about the recent changes to Medicare and how they impact people with severe disabilities:

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 (SGDs) 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 healthcare facility, such as a skilled nursing home or hospice. Taking these highly specialized devices from this patient group leaves them with no way to communicate at the patient's most vulnerable moments and at a time when medical attention is critical.

Unlocked Devices
Effective 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. As of September 1, 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 the 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.

Eye-Gaze Access
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 a 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.

We cannot allow this to happen! Every phone call, email and office visit will help! Take action today and forward this message to anyone who will help.

David Dikter
CEO, Assistive Technology Industry Association (ATIA)