The letter which follows was sent to Marilyn Tavenner, Administrator of the Center for Medicare and Medicaid Services (CMS). I understand a number of organizations have been told to stand down on any organized letter writing or calling campaigns.
As I wrote on this blog on July 28th, ALS patients don't have the time to wait for the political wheels of change to churn - especially in a mid-term election year.
I'll allow the letter to speak for itself, since I haven't spoken in 5 years. And if CMS and Ms. Tavenner's recent rule changes are allowed to stand, I'll only be allowed to "speak", should I lose my hand function, to people in face-to-face situations. No internet. No email. No text. No Facebook. Not even word processing.
That's wrong. If CMS is acting within the bounds of its legal authority, Congress needs to change that. If not, these rule changes need to be reversed and people held accountable. This isn't a political issue. This an issue of fair and equal access for millions of speech impaired people in this country. The current state of affairs cannot stand and the speech impaired of this country cannot be allowed to be silenced by a bureaucracy that is taking a technological leap backwards 20 years.
Feel free to share this letter. Feel free to write your own. Every day 14 people die of ALS and 14 more are diagnosed. Don't let any of them die without being able to say goodbye to family and friends miles away.
August 8, 2014
The Honorable Marilyn Tavenner
Administrator
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244
Dear Ms. Tavenner,
I am writing as a private citizen and someone afflicted with Amyotrophic Lateral Sclerosis (ALS) since 2007. I am also a person, because my hand function is deteriorating and my speaking voice is gone, who will soon need a Speech Generating Device (SGD).
The purpose of my letter is to express concern over CMS Final Rule 1526-F, which as of April 1st of this year moved SGD's from the "fully purchased" category to "capped rental". I also have concern with the pending September 1st deadline which will prohibit beneficiaries from adding communicative software to a Medicare rented SGD, such as text, email and video conferencing.
I am certain, after receiving the letter dated March 6th from Senators Cochran and Schumer and Representatives Sensenbrenner and Crowley requesting CMS delay the April 1st implementation, a letter dated July 9th from my own Senator Collins and multiple letters from various advocacy groups and individuals, you are aware of the concerns over this issue.
I am writing this as an Open Letter and intend to share this on social media. Please understand my purpose is not to embarrass CMS or you. Rather, my purpose is to obtain clarity because of rampant misinformation, misinterpretation and in all candor, because I have yet to see CMS' rationale behind the April 1st decision or the upcoming September 1st deadline.
I am also writing Molly Moran and Rebecca Bond of the Civil Rights Division of the Department of Justice on this. I am asking for clarity as to whether CMS is subject to the Americans with Disabilities Act and/or if CMS' decision to prohibit speech impaired people from purchasing additional functionality for their SGD, as has been the practice in the past, is considered a civil rights violation. Functionality such as email, texting, video conferencing, all requiring internet access, and word processing are common communication tools to which non-disabled individuals commonly have access. It is my personal feeling that CMS, even if it is not subject to the letter of the ADA, is certainly guilty of violating the spirit of the law with these new rules. The topic isn't "Medical Necessity", it's fair and equal access for the disabled.
I am including, for your review, pertinent excerpts from two DOJ documents which make clear DOJ's recognition that disabled individuals are using Internet Protocol (IP) tools such as text, email and video conferencing with increasing frequency, especially for e911 service.
Let me be clear: The 2.5M speech impaired people in this country and I am not asking CMS to pay our internet access bills, or for apps for gaming or for any other functionality beyond face to face communication (as is the goal of the September 1st deadline). However, like you, I want to be able to text my 18 year old son to be sure he's ok when he's out. I want to be able to type a letter to my Aunt in Indiana. I want to be able to email my Congressional Reps when I have a concern. I want to turn my TV and stereo on without relying on someone else. I want to post a Facebook message of love and support to a friend with ALS in Oregon. I want access to what "normal" people have. CMS won't let me, even though the technology is available at no extra cost to Medicare. Prohibiting access to communication tools which most 10 year olds use every day, especially when there is no cost incurred by CMS, defies logical thought.
I would ask that you answer the following questions in detail:
- Regarding capped rental, why did CMS choose this as an option, even though it will result in a 5% increase in cost?
- How aggressively does CMS plan to enforce the provision that takes a customized SGD away from a beneficiary when they need it most? (During an extended inpatient stay.)
- What is the rationale behind prohibiting a beneficiary and vendor from adding IP related communicative functionality at the beneficiary's expense?
- Since most SGD manufacturers have been innovating with their hardware and software development to include IP related tools including Social Media apps like Facebook, will CMS refuse to cover these devices after September 1st?
- Please explain the rationale behind not covering "eye gaze" equipment because it's considered an "access method". How does CMS propose a paralyzed individual use an SGD effectively? Is this an attempt to shift the cost of equipment to the beneficiaries?
Thank you so much for your attention to this matter. I am planning a trip to DC in the coming weeks. If you would like to meet, I would welcome the opportunity. I understand that CMS has been vilified regarding this issue in the social media.
My fervent hope is, in some small way, my efforts with you and my Congressional delegation, can help bring about changes which equitably meet the needs of CMS and the millions of beneficiaries it serves. I look forward to seeing your response.
Sincerely,
John A. Gregoire
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