Technology Is Empowering, But Only If You Can Afford It

People with Disabilities Are Being Denied Access by New Medicare Restrictions

By Steve Gleason

Former NFL standout and ALS patient and advocate

All too often, I hear people describe ALS as a prison. While it certainly feels like a prison physically, there was no sentencing or due process when it comes to ALS. I was never convicted of anything by a jury of my peers to determine my fate. Yet, here am I am, like my brothers and sisters with ALS and like their caregivers who are now an accomplice to this process.

While I understand the prison analogy, for those with ALS, it’s inaccurate on many levels.  Convicted prisoners in this country are afforded rights by the 8th Amendment.  They have the right to adequate medical care. They have the right to make their medical condition known and have the right to access qualified staff and care. Prisoners also have the right to outside communication, have access to telephones and access to the internet.

If you have ALS and you do not have access to large sustainable amounts of money, you have lesser rights than convicted prisoners. I recently wrote an open letter to our state’s legislators asking for assistance with new Medicare rules regarding Speech Generating Devices (SGD) and Advanced Power Chairs. The legislators responded immediately and have been attempting to make change in the Capitol, but to date, the new rules still stand.

If you rely on Medicare to obtain an SGD, you will not have internet access or even the ability to use word processing. If you have to go to the hospital, when communication is critical, the rented device that allows you to communicate with doctors, nurses or.. anyone, will likely be yanked from you due to the new Medicare policy.  Your chances of being provided an SGD at a time like this would actually be better if you had ALS and were in prison for committing a crime.

Since my diagnosis, my story has been told numerous times.  It has been shared on HBO and Good Morning America specials, ESPN and NFL Network documentaries, and nearly 200,000 followers on social media.  Our foundation has raised millions of dollars to bring awareness to and ultimately end ALS.  Unlike the tens of thousands of others living with ALS, I am fortunate. I have resources available, so I do not have to go to Medicare for an SGD.  Sadly, if I was reliant on Medicare, and I was denied access (as many currently are) to normal communication avenues like word processing, text messaging, or the internet, my voice would be muted.  My productivity smothered. I would have faded to a terribly silent death.

Prior to the new ruling, people with ALS could qualify for the SGD and pay a fee to activate features like the internet and word processing.  Apparently, the people who created the new rules consider basic word processing, access to internet correspondence and social media superfluous to basic communication.

We have asked every person close to this situation why Medicare felt the need to completely restrict the devices and we have not received a single reasonable answer. It was speculated that perhaps allowing people with ALS access to the internet might encourage “gaming” or inappropriate use.

Maybe there is a basic misunderstanding. Let me be clear.  People with ALS or any other neuromuscular disorder, including spinal cord injury, can and will continue to be productive.  I have personally met dozens of these people and corresponded with thousands more.  Technology, including eye tracking and the internet, allows them to collaborate with peers and colleagues to continue whatever their purpose may be. Artists continuing their art. Teachers continuing to teach. Architects continuing to design. Producers continuing to produce.

My advisors don’t want me to put it this bluntly, but it needs to be said. People, who want to be productive, are being denied basic human rights, and Medicare is most likely violating the Americans with Disabilities Act (ADA – http://www.ada.gov/pubs/adastatute08.htm) because of a fear that a few might access the internet inappropriately. The Act plainly states that:

(1) physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society

(2) discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, COMMUNICATION, recreation, institutionalization, health services, voting, and ACCESS TO PUBLIC SERVICES;

If you consider yourself productive, and have never used word processing, the internet, text messages or any chat platform to enhance your productivity, stop reading this immediately, I will waste no more of your time.  On the other hand, if you have utilized these tools to increase your productivity, I hope you can understand the irresponsible action on the part of Medicare.

Please understand this CMS, when you’ve been diagnosed with ALS and given 2-5 years to live, losing the ability to communicate is what you most fear. Although I have been described as imprisoned in my physical body,  I am still here. I am liberated by technology! I can see and I can express my thoughts and desires to loved ones, caregivers and to you.  I am productive and can function more independently. I am not in prison, but for those reliant on Medicare for normal communication, they might as well be, so their rights would actually be protected.

About Steve Gleason:

Steve Gleason will always be remembered for his blocked punt on the night the New Orleans Superdome reopened for the first time after Hurricane Katrina. Steve played for The New Orleans Saints from 2000-2008. In 2011, Steve was diagnosed with Amyotrophic Lateral Sclerosis (ALS), considered a terminal neuro-muscular disease. Steve is determined to inspire others by continuing to pursue life adventures despite his diagnosis, and has challenged the worlds of technology and science to identify their most promising developments toward new treatments and a cure.

Steve and his friends and family started Team Gleason to generate public awareness for ALS, raise funding to empower those with ALS to live a rewarding life, and ultimately find a cure.