Steve Gleason Enduring Voices Act

By: Mariah Eberhart, Ronica Hensley, & Paige Riddick 

What is the Steve Gleason Enduring Voices Act?
            What if you woke up one morning without the means to communicate with your family, friends, or co-workers? It would probably be terrifying! Many individuals deal with this on a daily basis and cannot communicate verbally, so they rely on devices to help them communicate with others. The Steve Gleason Enduring Voices Act makes speech generating devices (SGDs) available for continued use by Medicare recipients who qualify for the devices. The American Speech- Language-Hearing Association (ASHA) explains that SGDs are communication systems that allow individuals with degenerative diseases, such as amyotrophic lateral sclerosis (ALS) or Parkinson’s disease, to communicate. Before this act was introduced, Medicare policy limited an individual’s access to these devices by placing a cap on reimbursement. The act was passed in 2015 to remove these limitations, and is currently being reviewed for renewal. The renewal of this act will allow individuals covered under Medicare services to have ongoing and permanent access to necessary speech generating devices.

Why is it Important?
The Steve Gleason Enduring Voices Act was built onto the Steve Gleason Act of 2015. It is important to note that the Steve Gleason Act of 2015 expires on January 1, 2019. Even though that date may seem far off for most, the legislative process of bills being signed into law tends to be a fairly lengthy one. It is crucial to urge members of the House of Representatives along with those from the Senate to pass this law to ensure that individuals continue to receive ongoing and permanent access to their personalized SGDs covered by Medicare. If this legislation expires, the bill will have to start over from the very beginning of the legislative process. This could leave SGD users without access to the devices they need.

Previously, Medicare refused to pay for SGDs if users lived in a nursing home, hospice, or hospital. SGD users still needed a means of communicating in these settings, and many of those facilities were unable to provide individuals with a proper substitute. Medicare also prohibited devices equipped with non-speech functions, such as eye-tracking, which may be crucial for individuals with significantly reduced physical abilities (i.e., a patient with ALS). All of the above provisions were set forth by the Centers for Medicaid and Medicare Services (CMS), and it was this agency that announced that changes had to be addressed through legislation rather than internally.

According to ASHA, speech-language pathologists (SLPs) are the only professionals with the ability to recommend Medicare covered SGDs through a formally written evaluation.  SLPs work diligently to not only find the device the best suits the needs of their client, but they are also responsible for programming the device and training the client to use it for communication purposes. It is crucial that current and aspiring professionals advocate for this Act because our clients may be directly affected by the expiration or renewal of the Steve Gleason Act of 2015.
 
What Can You Do?
As you can see, the use of SGDs can be crucial to the way a person is able to communicate. In fact, some individuals would not be able to successfully communicate at all without the use of an SGD. It is of high importance that those who need one will have access to one on a daily basis in any setting. Here are some ways you can advocate:

• Educate yourself on the topic
• Write letters to your local representatives letting them know you support the Act
• Raise awareness about the cause and get others involved
  • Post on social media
  • Make phone calls
  • Hand out informational forms/packets
  • Post fliers up at your local attractions/campuses
  • Be available and ready to answer any questions that may come up

 
The more active you are in your advocacy, the more awareness you will raise. Let your passion for this issue shine and get people excited!