Friday, August 29, 2014

The MONSTER has a New Nemesis

Many of the people I've met with ALS often refer to it as The Monster. It's a way of encapsulating what we all know about the dark side of the disease in simple terms. 

The Monster has no shape or form, it looks different on the shoulders of everyone it attacks. The Monster has no voice. It's deathly silent, in spite of the thousands of voices it steals. The Monster comes without warning. It's victims are young and old, rich and poor, athletes and couch potatoes. Sometimes, The Monster devours it's victims in months, sometimes a few years, sometimes it toys with them for decades. 

There have been millions of White Knights over decades, dedicating themselves to finding where The Monster lives, how it moves, why it does what does. These Knights wear lab coats instead of armor. Their weapons are test tubes, beakers and petrie dishes. Whenever one of the Knights shouts to the others "I've found it's tracks!" so far, it's been a dead end.

The Knights have sponsors, mostly the friends and family of The Monster's victims. The sponsors have done much to feed, clothe and arm the Knights. Begging, appealing, selling cupcakes, doing bottle drives and even digging into their own dwindling funds to keep the Knight's quest to find The Monster's lair moving forward.

In the past two months, a Crystal Knight has joined the fray. This Crystal Knight has a heart as cold as ice when it comes to his loathing of The Monster. Yet, this warrior brings joy and comfort to the afflicted and their families. He even has the ability to recruit previously disinterested parties to follow him into battle, sponsoring the White Knights, comforting the afflicted and standing with families.

The Crystal Knight has changed the battlefield forever. The Monster is on the run and spirits of its victims, their families and the Knights are high. People continue heeding the call to arms of the Crystal Knight. 

But this is a cautionary tale. The battle goes on. There will be difficult days and more casualties ahead. The key to winning the battle and sending The Monster to the bowels of hell is the people who have answered the Crystal Knight's call. They MUST stay engaged! Without the level of excitement, compassion and support we've seen in the past two months, the battle will tilt again, in The Monster's favor. Please don't let that happen!

Here are some links to keep your mind, spirit and heart in the battle.!get_involved/c8k2


Thursday, August 28, 2014

Has YOUR Congressional Rep Signed On to Confront CMS?

SEE THE ATTACHED NOTE AND LIST OF CONGRESSIONAL MEMBERS WHO HAVE NOT SIGNED THE "DEAR COLLEAGUE" LETTER CIRCULATING THE HILL! If your Congress people haven't signed on, contact their office and ask why. This means voices for the voiceless.

MAINE PEEPS! Angus King is the only Maine member who hasn't signed on! Call or email his offices today!

OUR CALLS AND EMAILS ARE WORKING : You are part of change

Since the delay in the implementation of the PDAC certification of 12-1-2014 was announced last Friday the congressional sponsors of our "Dear Colleague" letter have decided to keep it “opened” for one more week to enlist as many supporters . Additional signatures means higher ability to make change. The goal is to have over 100 Signatures....... Before calling out CMS.

Coming out of our PDAC meetings today in Fargo it is super clear that we need to make this change through our elected officials. Keep calling, keep emailing… I can't stress that enough. Call everyone you know....... I guarantee for everyone person you call 10 ALS , and Rett Families (and so many others) will have a hug and a huge thank you behind it....

Lots of good news, but we need to keep up the push! See below for updated list of signers. Great addition today: Senate HELP Committee Ranking Member, Sen. Lamar Alexander. HUGE.

Current totals: 67 House Members; and 5 Senators (Collins, Landrieu, Vitter, Blunt, Alexander); and for what it’s worth: 33 states.
If we can add any additional pressure to any Senator please do what you can………….

Here is a current list of those who have signed on the letter. We need to address the ones that are not on this list:

Rep. Suzan DelBene (D-WA)
Rep. Doc Hastings (R-WA)
Rep. Cathy McMorris Rodgers (R-WA)

Rep. Michele Bachmann (R-MN)
Rep. Betty McCollum (D-MN)
Rep. Erik Paulsen (R-MN)

Rep. Collin Peterson (D-MN)

Sen. Roy Blunt (R-MO)

Rep. John Larson (D-CT)

Rep. Julia Brownley (D-CA)
Rep. Tony Cardenas (D-CA)
Rep. Alan Lowenthal (D-CA)
Rep. Adam Schiff (D-CA)

Rep. Patrick Meehan (R-PA)
Rep. Jim Gerlach (R-PA)

Sen. Susan Collins (R-ME)
Rep. Chellie Pingree (D-ME)
Rep. Mike Michaud (D-ME)

Rep. John Conyers Jr. (D-MI)
Tim Walberg (R-MI)

Rep. G.K. Butterfield (D-NC)
Rep. George Holding (R-NC)
Rep. Walter B. Jones (R-NC)
Rep. Patrick McHenry (R-NC)

Rep. Mark Meadows (R-NC)

Rep. Michael E. Capuano (D-Mass.)
Rep. Katherine Clark (D-Mass.)
Rep. Joe Kennedy (D-Mass.)
Rep. Stephen F. Lynch (D-Mass.)

Rep. John Tierney (D-Mass.)

Sen. Mary Landrieu (D-LA)
Rep. Vance McAllister (R-LA)
Rep. Steve Scalise (R-LA)
Sen. David Vitter (R-LA)

Rep. Lee Terry (R-NE)

Sen. Lamar Alexander (R-Tenn.)
Rep. Phil Roe, M.D. (R-Tenn.)

Rep. Steve Chabot (R-OH)
Rep. David P. Joyce (R-OH)

Rep. Jim Renacci (R-OH)
Rep. Tim Ryan (D-OH)
Rep. Steve Stivers (R-OH)

Rep. Gregg Harper (R-Miss.)

Rep. Yvette Clarke (D-NY)
Rep. Chris Gibson (R-NY)
Rep. Richard Hanna (R-NY)

Rep. Steve Israel (D-NY)
Rep. Peter King (R-NY)

Rep. Dan Maffei (D-NY)
Rep. Carolyn McCarthy (D-NY)
Rep. Louise Slaughter (D-NY)
Rep. Paul D. Tonko (D-NY)

Rep. Kevin Yoder (R-KS)

Rep. Bradley Byrne (R-AL)

Rep. Carol Shea-Porter (D-NH)

Rep. Leonard Lance (R-NJ)
Rep. Chris Smith (R-NJ)

Rep. Peter DeFazio (D-OR)

Rep. C.A. Dutch Ruppersberger (D-MD)

Rep. Ileana Ros-Lehtinen (R-FL)
Rep. Dennis A. Ross (R-FL)

Rep. James R. Langevin (D-RI)

Rep. Raul M. Grijalva (D-Ariz)

Rep. James Lankford (R-OK)

Rep. Robert J. Wittman (R-VA)

Rep. Michael T. McCaul (R-TX)

Rep. Trey Gowdy (R-SC)

Rep. Brad Schneider (D-Ill)

Rep. Harold Rogers (R-KY)
Rep. Ed Whitfield (R-KY)

Rep. Kevin Cramer (R-ND)

Rep. Jared Polis (D-Colo)

Don’t Let Medicare Take the Ability to Communicate Away from People Living With Severe Disabilities! Act Today!

Recent Medicare changes are drastically reducing or totally inhibiting access to the technologies that provide people living with disabilities the ability to communicate. These are some of Medicare’s most vulnerable beneficiaries.

ACT TODAY: Contact your Representative and Senators and ask them to sign the letter“Ensure ALS Patients Retain Access to Critical Communication Tools Ensure; Join letter to CMS urging clarification of recent Speech Generating Device policies.”

Sweeping changes have been put in to place in 2014. The critical issues at hand:

Capped Rental
As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGD’s) used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments, when they enter a health care facility, such as a skilled nursing home, or hospice. Taking these highly specialized devices from this patient group leaves them no way to communicate at the patient’s most vulnerable moments and at a time when medical attention is critical.

Unlocked Devices
Effective September 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate and have contact with loved ones and medical professionals who are outside the patient’s home. Medicare has stated that it will not allow individuals using Medicare-provided speech generating devices to use their own funds to "unlock" the devices, even though this is done at no additional cost to Medicare. The ability to “unlock” devices allowed beneficiaries the ability to communicate and participate beyond the confines of their rooms through email, environmental controls, internet, and text messages. As of September 1st, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of device. This change terminates any direct private communication to the doctor, therapist and clinical teams via email, from caretakers via text and even first responders in an emergency situation.

Eye-gaze Access
Currently, Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS. Both a doctor's and speech language pathologist's evaluation is necessary and documented in order for the patient to receive the benefit. However, Medicare continues to routinely deny eye-gaze access even when it has been deemed medical necessity by two trained and certified medical professionals. The appeals process is now backlogged for years in the Medicare system. During that time, those who have been diagnosed with ALS have precious few months before symptoms onset that limit their ability to speak while awaiting their appeal outcome. After years of waiting for an appeal to Medicare, the eye–gaze coverage is routinely allowed, but individuals may have already passed without the opportunity to communicate with friends and loved ones or participate in their own care during the final stages of their lives.

We cannot allow this to happen. We need to work together to change this decision.

How Can You Help? Your support is imperative NOW.

We need you to speak up for those who can’t and we need quick action to stop these devastating changes from impacting patients who are in desperate need of access to speech generating devices. We are asking you to please contact your local House Representatives and Senators, asking that they sign a bi-partisan newly introduced letter to Marilyn Tavenner, head of the Centers for Medicare and Medicaid Services (CMS) to address these changes. The Dear Colleague letter is titled:

"Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies"

The letter will be open for only one week; your members of Congress must sign-on by Wednesday, August 27th. It is currently sponsored by Honorable Member of Congress Cynthia McMorris-Rodgers, Honorable Member of Congress John Tierney, Honorable Member of Congress Erik Paulsen and the Honorable Senator Collins. Every phone call, e-mail, office visit matters! Please forward this to everyone who will act. If one of these is your member of Congress, please contact them and thank them for their support on this matter of critical importance.

Find Your Local Representative

Find Your Local Senator

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Hey Maine friends! We are on the hunt for a free or cheap venue to host a fund raising event.. Only requirement is that it should have a stage for a band. Nightclubs, pubs, grange halls, dance limits on what kind of facility. We are early enough in planning that we can fit the event the around the venue. If you know a guy who knows a guy, chat him up and let us know. Thanks!

Oh just shouldn't be in Fort Kent:)
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  • Patty Meaney Whalen, Lynda Donnelly Dellinger, Linda Walker Gregoire and 2 others like this.
Kudos to Sean Patrick O'Brien for writing an article that tells it like it is. Love a manly way, of course:) PLEASE READ THIS,! Patrick talks about the care he receives at the Saling ALS Residence in the Leonard Florence Center in Chelsea, MA. A model we are determined to replicate in Maine!

  • Lissa Woodruff Stempek, Barry Morrill, Lynda Donnelly Dellinger and 4 others like this.
  • Laci Berry, Brian Bickford, Patty Meaney Whalen and 2 others like this.
Amanda Hill just left. She shot the interview they teased on the 6 PM news. Look for it! As usual, my wife was stunning and articulate 
Wondering what the fuss is about regarding Medicare and Speech Devices? Watch this:
  • Mandy Renteria, Maria Manos Clark, Greta Roberts and 6 others like this.