Whatever condition we are in...

“Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it's the worst possible condition, because, if it is, we're finished anyway, whether we go on the journey or not, and it's better to die having made the journey we're been longing for than to be stifled by our longing.”
― Thomas Bernhard, Concrete

We've lost several members of the ALS Community over the past few weeks. Some went out fighting. Others simply said "Enough." Very personal choices which deserve to be honored and should never be judged.

It's commonly said that "Life is a journey". I respectfully disagree. Life is only a journey if you live it. And you you can live life even if you're "terminally" ill. I would argue that many of the people I know who are taking the most prolific  journeys - literal, spiritual, artistic or otherwise - are individuals whom Doctors have told, "There's nothing we can do."

Steve Gleason is an amazing example of an individual who hasn't let ALS define him. Steve has been to football games with his old Saint's team mates flown to Peru to climb Machu Pichu (with a little help from his friends), been to Microsoft to inspire and press their innovation teams to improve communication hardware/software for the disabled. He's even attended the most recent State of the Union address. Steve Gleason is living his motto "No White Flags". 

The Hope-JG Foundation is rooted on the premise that every family with ALS matters. We know technology can make a world of difference for people with neurodegenerative disease. As our friend Steve Saling says, "Until there is a cure, technology is the cure." 

Technology can enable a paralyzed person to paint, create website or make a movie. It can enable a speech impaired person to make phone call, communicate with their Doctors and tell someone "I love you." Technology makes it possible for the disabled to take journeys like anyone else (albeit with a little extra effort).

Won't you join us? We intend to see an ALS/MS Residence built in Maine. It will have state of the art technology to provide the residents with an  unparalleled level of independence. The Residence will provide organic, whole food nutrition for those who can eat by mouth and those on feeding tubes. It will be cleaned with non-toxic cleaning agents. 

No matter what journey families with ALS are on, we will be there to support them. 

To donate go to: http://www.hope-jg.org/#!donate/c1ghi

To find out about the ALS Residence Initiative go to: http://www.alsri.org

Why Would Medicare Lie to the American Public Rather Than Defend It's Position?

At 8:02 PM last evening, the Washington Post posted online a wonderfully written Op-Ed piece by former NFL star Steve Gleason.

http://www.washingtonpost.com/national/health-science/former-nfl-player-with-als-uses-his-eyes-to-type-and-technology-to-speak/2014/08/29/0de480ac-2d1e-11e4-9b98-848790384093_story.html

At 8:10 PM, the paper posted the following, carefully worded statement from Medicare spokesperson Aaron Albright

“We are committed to ensure that beneficiaries have access to needed technologies to improve their quality of life, including the coverage of speech-generating devices for individuals with a severe speech impairment. Medicare has covered speech-generating devices since 2001, which greatly improve the day-to-day lives of many beneficiaries. This policy has not changed, nor have we proposed this coverage to change. With the rapidly evolving technology in this area, our Medicare payment contractors are currently undergoing a product review of available speech-generating devices to ensure that they comply with our coverage rules and the Medicare law. CMS extended this review until Dec. 1, 2014 to ensure that we [are] able to review and address issues that stakeholders have . . . raised, including the ALS community’s desire for beneficiaries to have access to devices with expanded functionality.”

The reaction on social media has been growing exponentially as disability rights advocates, the afflicted and their families wake to this news. Advocates and manufacturers as well as members of Congress have been flooding The Centers for Medicare and Medicaid Services (CMS) with letters of reaction to a Coverage Reminder CMS issued on 2/27/14 specific to Speech Generating Devices (SGD's).

The Coverage Reminder states, in part, that:

"This benefit does not extend coverage to the broader range of augmentative and alternative communications devices (AAC) that have capabilities exceeding the sole function(s) of speech generation such as (not all-inclusive): wireless and cellular communication capabilities, environmental control capability, non-speech generating software (e.g., games, word processing, email)."

Essentially, the only type of SGD Medicare will allow is one which can only perform communication to those within range of hearing. Don't take my word for it, here is the text of the actual CMS reminder:

http://www.cgsmedicare.com/jc/pubs/news/2014/0214/cope24807.html

The more important point here is: Why did Medicare choose to release this carefully worded and somewhat obtuse statement rather than defend it's position as outlined in the 2/27 Coverage Reminder? CMS is dodging the issue, not responding in detail to the public, advocacy groups and even Congress. In his statement, Mr. Albright states: 

"This policy has not changed, nor have we proposed this coverage to change."

As with any lie, there is a grain of truth. Mr. Albright, it's the changes in administration of the rules we are concerned about. As you wrote this statement, you knew people were being denied devices. You knew that CMS was changing the administration of the rules to deny paralyzed people eye gaze equipment to access the functionality of SGD's. Why lie? Why not say: "We're changing the playing field because it's an attempt to shift costs to beneficiaries."? or even "We don't believe that disabled people need internet access." 


Mr. Albright, your boss, Ms. Tavenner has chosen to ignore my letter to her (http://hope-jg.blogspot.com/2014/08/an-open-letter-to-marilyn-tavenner.html). I know, she's ignored the pleas of housands to at least explain herself. I'll give you the same opportunity. I can be reached through this blog or at: jgregoire7@roadrunner.com. 

I'd love to hear why CMS is dodging this issue and using you to perpetuate an outright lie to the most vulnerable among us.

An Open Letter to Marilyn Tavenner About Medicare and Speech Devices

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