We posted an article not long ago titled "Advocacy: Do New Medicare Rules Violate The ADA?". To date, it's our most popular article and most retweeted one. Our friend and comrade in arms, Steve Gleason posted a similar article on the Team Gleason website recently. http://www.teamgleason.org/letter2/ In his post, Steve said: "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...".
Steve is correct - tactically and morally. The Hope-JG Foundation, along with groups like Team Gleason and hundreds of other individual advocates, continue to work within the legislative system with Congress. We will continue that effort but it requires the kind of political balancing act and diplomatic parsing of language that people with ALS, who have a relentlessly progressive disease, cannot afford. At some point, someone needs to stand in front of the bureaucrats at CMS and shout "ENOUGH!"
As early as 2010, the Department of Justice, in an Advanced Rulemaking document titled "Nondiscrimination on the Basis of Disability in State and Local Government Services; Accessibility of Next Generation 9-1-1", acknowledged in detail the increased use of Internet Protocol (IP) based tools such as email, text, and even video conferencing (like Skype and FaceTime). The DOJ's acknowledgement of the use of these now ubiquitous modes of communication should be a big deal to anyone concerned about CMS' current archaic, arbitrary and cruel position on the use and coverage of SGD's. The DOJ oversees the Americans with Disabilities Act (ADA). As the enforcement body responsible for the ADA, we feel they should be involved in this discussion and should be reviewing CMS' standing rules.
With all due respect, PALS don't have time to wait for the legislative wheels to churn. People with ALS are literally in their last months of life and, if CMS' current position holds, those individuals won't be able to send an email to a son or daughter far away. They won't be able to write a letter to their Congressional reps. They won't be able to say goodbye to anyone who isn't in earshot. All because...well, we don't know because CMS won't give a specific rationale.
NOTE: We are NOT asking CMS or the American taxpayer to pay for internet access or additional functionality. The irony of the new rules is that they never did. "Unlocking" devices has always been a transaction between the SGD vendor and patient.
Yup...the time for diplomatic talk is over. Time to make some noise.
You can call or write your Congressional reps and make some noise about this:
Read the latest CMS Rulemaking document:
Read the 2010 DOJ document which clearly recognizes the increased use of IP based tools for communication:
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