By Steve Gleason
I was diagnosed with ALS four years ago. Now I am unable to move my body, except for my eyes. I communicate through technology called a Speech Generating Device (SGD). The SGD allows me to maintain contact with the world around me – to express my thoughts, feelings and needs. It allows me to communicate with my family and community, to retain independence, and to continue to be productive and purposeful.
If I had been diagnosed with ALS 50 years ago when Medicare began, I would have been unable to communicate, silenced by a lack of technology and expected to fade away quietly and die. Since Lou Gehrig’s death there has been no effective medical therapy development for ALS patients. During the same time period technological advancements for ALS patients have been, like the technology industry, exponential. In a sense, while there is no medical cure, technology can act as a cure. Current technology has revolutionized the way society communicates. Texting, blogging, tweeting and using the internet is now the fabric of humanity’s ability to communicate. We, citizens, must ensure that Medicare keeps pace with the technology advancements that give life and hope to those in need.
As technology has evolved, Medicare’s willingness to expand coverage has, at times, lagged behind. In the past year, Medicare chose to only cover devices that produced audible speech. Last month, after receiving thousands of letters from the citizens of this country, Medicare proposed expanded coverage for devices (tablets, computers, and smart phones) and expanded coverage for communication (email, text, and phone messages) for those of us who meet the medical criteria. This coverage expansion will allow the proper type of technology and communication to be used in the most appropriate form – allowing people with disabilities to remain purposeful and productive members of society.
Medicare coverage must keep pace with the "cures" that technology provides that help people communicate and live productively. The quality of life for all our citizens depends upon it.
For more from Steve, visit the Gleason Initiative Foundation website.