Sailing Underscores CRT’s Crucial Role

Powerful presentation from ALS patient and advocate Steve Saling reminds national CRT conference attendees why their efforts to protect CRT access are so important.

• By David Kopf
• May 01, 2017

“Failure is not an option” when it comes to protecting complex rehab technology, a featured speaker reminded attendees of last week’s April 26-27 National CRT Leadership and Advocacy Conference.

Steve Saling, founder of advocacy and fundraising organization The ALS Residence Initiative (ALSRI), shared his personal story of being diagnosed with amyotrophic lateral sclerosis (ALS), and how he has come to depend on CRT in his daily life. Moreover, he underscored why attendees must protect patients’ access to those life-changing devices and accessories.

Watch Sailing’s full presentation on YouTube, or here:

Sailing, a landscape architect who once designed parks for people with disabilities, has had ALS for 11 years. He described how the disease not only changed his life, but how CRT innovations and other technologies have helped him continue living life as a valuable, productive member of society. He added that as his diseases has progressed, those technologies have helped him meet those new challenges.

However, he noted how those innovations are under constant threat of CMS budget cutting, and urged the conference’s attendees to drive home the point that CRT benefits and indispensable in their meetings with lawmakers.  

“I am constantly fine tuning the position of my chair to keep my head in the sweet spot where my head can comfortably and confidently navigate my wheelchair and my computer,” Sailing told the audience. “You can understand why it infuriates me that some bean counter at CMS is trying to save money by taking away critical tools. I am not a bean to be counted. I am a real person who will suffer terribly if the tools provided me to live a vital and productive life are taken away. They tried once before to take computers away from the people who need them most. We rallied and Congress listened. It is time to rally again.

“My disability may be severe but that is why I need more access to technology, not less,” he added. “I feel so blessed to live in an age when technology can literally open doors for me.”