Speech Generating Device and Medicare

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Max I thought capped rental was one of only 3 things Medicare has done this year-the other 2 being eliminating all ontact of SGD's with the outside world and refusal to fund eyegaze devices
 
On a bitter side note Rep John Tierney who is one of those circulating the Dear Colleague letter ) making him a mega- good guy) LOST his primary yesterday
 
>Max I thought capped rental was one of only 3 things Medicare has done this year-the other 2 being eliminating all ontact of SGD's with the outside world and refusal to fund eyegaze devices

Neil, I went to DC, advocated w/ 5 of our TX Congressmen, and still don't have a clue has such a preposterous ruling could have ever been made. The rental bs is bad enough, but not to allow the internet access? What logic could be driving such decisions?

I think the only solution is to get the alsa+mda to launch a major social medial offensive now, while the IBC is still capturing public awareness. I know we can't do it alone and need national sponsorship. Then target 10 legislators to take on this 'hobby horse' to garner political capital.
 
Sorry to beat the same hobbyhorse, but there is an attorney in New York-Lew Gowlinker I think, who is looking at whether to file a lawsuit against Medicare for these changes. Sometimes I think lawsuits can be more effective than trying to advocate in Congress-especially with our current disfunctional form of government. You might want to get in contact with him.
 
My senator wrote back. It appears to be a copy'n'paste of the CMS answer. They made the changes entirely to cut the cost of DME.

I intend to tell my senator the reality of the situation and ask him to make an exception for ALS patients.
 
The whole thing is so cruel! what is the purpose of these new rules? why would they say you can't even spend your own money to connect to the internet. in this day and age, it is like putting people in solitary confinement--totally cutting them off from the most basic communication that we all enjoy. Neil, I agree if the law can not get reversed, then a class action suit would be good. Pals are not asking for much--just the ability to communicate with technology that is available. How is internet access costing them money? seriously.
 
I sent this email tonight.

Dear Senator Nelson,

My wife, ~~~, died of ALS. She was a military officer during the Gulf War and later a medical doctor at the Orlando Veterans Administration Medical Center. (Veterans have twice the chance of getting ALS than non-veterans for some unknown reason.) There is no cure.

You probably know what ALS is. It is progressive and total paralysis. Eventually, the patient loses the use of all their voluntary muscles and lies in a bed, unable to move, eat, or speak for the rest of their lives. You can itch, but you cannot scratch. You can suffer great pain, but you have no way to communicate to your nurses. Paradoxically, the mind is totally intact. You have thoughts, memories, feelings, emotions, all perfectly normal. But your muscles no longer work. You lie there, for months or years, your paralyzed eyes fixed on the ceiling, just waiting to die. ALS is always, always fatal. Families thank God for the relief that death gives.

Communication with the “outside world” is all important to these souls. They communicate with a computer that tracks the eyes gazing across a computer screen, spelling out words and phrases. It is difficult and time consuming. But quite frankly, this tedious activity—communicating through eye tracking—is all these people have got left in their lives. They desperately need their Speech Generating Devices (SGDs) to have the ability to write letters, send email, read books, and browse the Internet.

Unfortunately, Medicare has recently taken away these poor souls’ ability to communicate. In your reply to my earlier letter, you said Medicare made these policy changes in order to save money. Specifically, Medicare has stopped covering any SGD that might be upgraded to include the ability to email, access the Internet, or control bed functions, lamps and televisions. Medicare also is denying coverage for eye tracking devices. In fact, Medicare won’t allow a patient to upgrade their SGD at their own expense. Further, Medicare has implemented a “capped rental” system, part of which means that if a person with ALS is admitted to a hospital, nursing facility, or hospice, Medicare stops paying for any SGD rental at all, removing the patient’s SGD entirely.

Only 30,000 people in the United States have ALS. But it is a torturing disease. We must correct Medicare rules to relieve the torture.

Please persuade Medicare to reverse this policy where it concerns patients with ALS.

~~~
Captain USAF (retired)
 
well done, Mike!
 
good job Mike!
 
Thank you Mike. Can we steal some of your words to send to our own reps. I don't think they even read the canned letter I sent.
 
Mike: They are not cutting the cost of the DME-if you congressman told you they were he's either an idiot or a liar. Example: Medicare never paid for internet or other connections on SGD's but now they wont allow us to pay for them either-doesn't save them a nickel. Another example: now that medicare ren ts out SGD's over 13 months, after which the equipment becomes yours to own, over that 13 months they are paying 105% of the cost they would have paid if they just bought the device up front-they actually lose money on that one. Not that I expect anyone in Congress to be ethical or use their heads, but confront him with facts.
 
Here is more information on the changes:

Immediate Action for ALL SGD (speech Generating Device) users.
From MedicareAdvocacy Group
Let Us Hear From You
If you know of any patient who has entered an inpatient facility and has had his or her speech device taken away from them, or if you know of anyone who has been forced to pay for a speech device out-of-pocket after entering an inpatient facility, now or in the future, please call Kathy Holt at the Center for Medicare Advocacy 1-860-456-7790 or email [email protected] [ mailto:[email protected] ].
Center for Medicare Advocacy, Inc. Alert
(Read or Print Online at: CMA ||  CMA Alerts)
* Medicare's Reluctance to Embrace Technology: Effects on the Coverage of Speech Generating Devices
* Lawsuit Challenges Unjust and Inefficient Medicare Appeals Process
_________________________________________
Medicare's Reluctance to Embrace Technology: Effects on the Coverage of Speech Generating Devices
Technology can help the most vulnerable among us live with more capabilities than we would have considered possible, even a few short years ago. Rather than encourage technological advances that promote independence and safety, however, the Centers for Medicare & Medicaid Services (CMS) is reducing access to technology in an ill-conceived effort to control short-term costs and to avoid the public perception that Medicare is paying for "technology" rather than "health care." The problem with the CMS approach is that technology has become completely intertwined with almost every aspect of healthcare. While there are costs associated with technology, the improved quality of life it can bring to Medicare beneficiaries, and the money it saves through early detection and prevention, provides far greater benefits to the health care system.
CMS Changes Its Coverage of Speech Generating Devices
Through a new interpretation of longstanding rules, CMS is currently leading an outright attack on coverage for Speech Generating Devices (SGDs). SGDs are typically tablet-like units that allow a person to communicate thoughts by electronic voice generation when he or she is no longer able to speak. Without an SGD, which is highly personalized and uniquely programmed, many people are isolated and awake, trapped inside a body they cannot control, with no ability to communicate.
Effective April 1, 2014, Medicare will no longer purchase an SGD for a beneficiary; instead it must be rented. Further, if a person is in the first 13 months of using a rented SGD and he or she enters a hospital, long term care facility, or hospice, Medicare will take the person's SGD and "voice" away.
Effective September 1, 2014, if a person's SGD has the potential for any function other than speaking (for example, email), then Medicare will not pay for the person's ability to speak through an SGD – even though Medicare has never paid for additional functionality beyond speaking (any additional functionality has always had to be privately paid).
CMS Forces SGDs to be Rented Instead of Purchased, Effective April 1, 2014
Rather than embracing and encouraging technology, CMS is becoming more restrictive with its regulatory interpretations and coverage allowances. Up until April 1, 2014, Medicare paid for SGDs under federal regulation 42 C.F.R. §414.220, as "routinely purchased" (rather than rented).
Medicare claims data for 2012 show that SGDs were "routinely purchased" 99.3% of the time. According to CMS's new interpretation of the existing regulation, however, since SGDs were not routinely purchased at least 75% of the time from 1986 to 1987 – a time period well before the advent of SGD technologies – SGDs are not considered "routinely purchased." Consequently, CMS now says, in order for Medicare to pay for an SGD it must first be rented.
The Consequences of Capped Rentals for SGDs
CMS's guidance, effective April 1, 2014, reclassified SGDs into a capped rental regulation, 42 CFR § 414.229. The argument that SGDs did not exist in 1987, and therefore should not be evaluated pursuant to the 1986-1987 data set, has not impressed CMS.
Under capped rental durable medical equipment (DME), if a person requires Medicare Part A institutional care (hospital, long term, or hospice), Medicare finds that the "overall package of institutional care" includes any medically necessary DME under the heading of "…drugs, biologicals, supplies, appliances, and equipment…" (See Section 1861n of the Social Security Act Social Security Act §1861). During the course of a stay, the facility is obligated to furnish any medically necessary DME (including an SGD) since the facility's global per diem payment for the covered stay itself already includes any medically necessary DME.
Prior to April 1, 2014, and the SGD reclassification, Medicare beneficiaries usually brought their highly personalized SGD communication devices, purchased under Part B, with them for use during a covered Part A stay. As of April 2014, only beneficiaries who own their SGD will be allowed to bring their SGD with them to the facility.
In those cases where the beneficiary enters a facility under a covered stay, and is renting an SGD under Part B, it is the responsibility of the facility to ensure that the beneficiary has access to "an SGD if it is medically necessary while the beneficiary is in the facility during the stay." http://www.cms.gov/Outreach-and-Edu...k-MLN/MLNMattersArticles/Downloads/MM8566.pdf.
Having access to a facility-provided SGD is not helpful to most SGD users. Many ALS (Lou Gehrig's disease) patients, for example, use SGDs that require lengthy programming and training to accommodate a user's unique and limited abilities. As is well known, ALS often robs people of the ability to control their muscles. They lose the ability to walk, use their arms and hands, eat, speak, and, ultimately, breathe. As a result, people with ALS rely on technologies such as SGDs to enable them to communicate and continue to live as fully as possible as the disease progresses.
The expense of purchasing an SGD through the capped rental program also increases the cost of an SGD. The capped rental program results in payment of 105% of the original purchase price of the DME, ultimately costing both CMS and the beneficiary more money. http://www.cms.gov/Medicare/Medicar.../DMEPOSFeeSched/downloads/DME11_C_SUMMARY.pdf.
SGDs Are Highly Individualized and Customized
An SGD is not an "off the shelf" device and a generic SGD is not an "appropriate substitute." CMS is also incorrect in its assumption that facility staff will be able to program a generic SGD for a person who cannot use his or her arms and uses eye gaze technology. It is inappropriate to require and expect a Medicare beneficiary who has entered a hospital, long-term care facility, or hospice to abandon a highly personalized "rental" and use a non-customized SGD from a rental pool.
For whatever reason a patient needs to be admitted to a facility, will the patient be forced to go without a voice? Will the person put off going to a hospital? How will the beneficiary communicate his or her level of pain? How will the facility learn what medications they have been taking at home? How will these patients express their needs? If they are in their last days in a hospice, how will they communicate their love for their families?
New Legislation Is Needed
The move of SGDs to Medicare capped rental coverage is currently in effect. The Center for Medicare Advocacy, the ALS Association, and many other organizations support a legislative change to update 42 C.F.R. §414.220 to include review of data more current than the existing 1986-1987 requirement. Technology has come a long way in the past 27 years, and CMS needs to keep up with it.
CMS Plans to Stop Medicare Coverage of Any Device Capable of More Than Speech Generation.
Effective September 1, 2014, CMS also seeks to stop coverage for any SGD that has capabilities other than speech. This reverses a 13 year-old policy. Since January 2001, Medicare has considered SGDs to be within the Durable Medical Equipment (DME) benefit category established by Section 1861 (n) of the Social Security Act (Social Security Act §1861) and by CMS National Coverage Determination (NCD) 50.1). NCD 50.1 states that SGDs are characterized by… "software that allows a laptop computer or personal digital assistant (PDA) to function as a speech generating device." National Coverage Determination (NCD) for Speech Generating Devices (50.1) .
A May 2001 letter from CMS Chronic Care Policy Group Director Thomas Hoyer confirmed that "[c]omputer-based and PDA-based AAC [augmentative and alternative communication] devices/speech generating devices are covered when they have been modified to run only AAC software."
Reversing this position in a flawed national coverage reminder, Medicare announced that it will not pay for a beneficiary's SGD if it has the capability of being used for anything other than speech function, even though beneficiaries have always been required to privately pay for any additional functions (Joint DME MAC Publication posted February 27, 2014; Coverage Reminder ? Speech Generating Devices). It appears that CMS does not want the public to think that Medicare is paying for SGDs that may reside in devices alongside tablets, laptops, or phones.
CMS Should Not Implement the Proposed September 1, 2014 National Coverage Reminder
The September 1, 2014, implementation would be an incorrect interpretation of the 2001 NCD intent. Moreover, forcing individuals with limited abilities to have multiple devices will not benefit Medicare and is contrary to the technology that allows beneficiaries to live better lives.
CMS is struggling with the juxtaposition where advancements in healthcare technology overlap non-health care technology. But there is no going back to the days when the lines between health care and non-health care equipment were not so blurred. CMS should not attempt to retreat into the past, and CMS should not try to create barriers around "dedicated devices." Technology and healthcare are becoming more connected every day. CMS needs to look at the bigger picture – cost, quality of life, advanced detection, and prevention – and be grateful of the time, energy, and funding that technology savings can bring to the health care system.
CMS should clearly define the parameters of the function they will cover (speech) and continue to make payment for other device functions the responsibility of the SGD user. Otherwise, for example, it is punitive to remove someone's ability to pay for their own e-mail on a multi-use device because CMS wants to prevent the "slippery slope" of potential abuse.
Let Us Hear From You
If you know of any patient who has entered an inpatient facility and has had his or her speech device taken away from them, or if you know of anyone who has been forced to pay for a speech device out-of-pocket after entering an inpatient facility, now or in the future, please call Kathy Holt at the Center for Medicare Advocacy 1-860-456-7790 or email [email protected] [ mailto:[email protected] ].
Also, call 1-800-MEDICARE if you know someone who may become affected by these SGD changes. Calls to 1-800-MEDICARE are tallied by "complaint" and enough complaints about these unfair SGD policies will make a difference.
 
Thank you Mike. Can we steal some of your words to send to our own reps. I don't think they even read the canned letter I sent.

Of course.
 
Mike, please let us know how Sen. Nelson replies.
 
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