Speech Generating Device and Medicare

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Atsugi

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A little while back someone posted a link to a form letter we could send to our congress critters complaining about the new Medicare rule that prevents PALS from activating their speech generating devices.

I received response back from some senators, and the responses didn't even address the problem. Apparently the form letter was too complicated to understand.

I'd be happy to advocate for this cause, but I need a little help. Is there anyone familiar with this problem who could write it up in a nutshell so I can explain it clearly to our congresspeople?

--Mike
 

AfraidButNotAlone

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How about:


Dear sir/madam,

Don't be a dumbass! Communication is a medical necessity!

Continue to fund SGDs.

Sincerely,


A registered voter
 

Atsugi

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Uh, that much I got.

I'm looking for some facts like, What law defunded SGDs? When? What was the supposed reasoning?
What is it specifically we want our senators to do?
--Mike
 

Atsugi

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Atsugi

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OK. I've got a pretty good advocacy letter written that will bring tears to the eyes and spur anyone to action.
Just one thing--
What is it specifically we want our Senators to do? Is there a bill ready to cosponsor? Is there a law that needs repeal? What shall I tell our Congress Critters to do?
 

MaxEidswick

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>I've got a pretty good advocacy letter written that will bring tears to the eyes and spur anyone to action.

post a copy?

I'm asking both mds and alsa re: 'What is it specifically we want our Senators to do? '
 

MaxEidswick

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as sent to mda & alsa:

>What is it specifically we want our Senators to do? Is there a bill ready to cosponsor? Is there a law that needs repeal? What shall I tell our Congress Critters to do?

Please advise for forum users re: above,

Thanks!
 

Atsugi

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DRAFT of a letter to correct Medicare Rules

My wife died of ALS. She was a military veteran 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. Specifically, Medicare has stopped covering SGDs that include the ability to email, access the Internet, or control bed functions, lamps and televisions. Medicare also is denying coverage for eye tracking. Further, Medicare has implemented a “capped rental” system, 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.

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…[EDITOR’S NOTE: which rule is it that needs fixing?]
 
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MaxEidswick

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great letter!

so far:

Hi Max. I have forwarded your email to Elizabeth who is our advocacy specialist. I believe you met her in DC? Let me know if you don't hear from her in a timely manner please. Thanks!

Paulette Bennett LVN
Care Services Manager
ALSA-Texas Chapter/Houston
714 412-9196

On Sep 10, 2014, at 2:26 PM, "Eidswick, Max" wrote:
>What is it specifically we want our Senators to do? Is there a bill ready to cosponsor? Is there a law that needs repeal? What shall I tell our Congress Critters to do?

Please advise for forum users re: above,

Thanks!




Max L. Eidswick
970.691.4640
 

nebrhahe53

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Mike

Below is a summary of what Medicare did. My understanding is that these changes were made by bureaucrats and are called rules and opinions. Anybody with more info please chime in.

Recent changes to Medicare are drastically reducing the ability of the most vulnerable people with disabilities to communicate.

As of April 1, 2014, Medicare began denying payment for many of the medically necessary speech generating devices used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Spinal Cord Injuries, and other impairments, when they enter a health care facility, such as a skilled nursing home or hospice. Taking these highly specialized devices away leaves them no way to communicate at a vulnerable and terrifying time.

On September 1, 2014, many severely disabled individuals will have all contact with the outside world cut off. For many years, Medicare allowed individuals using Medicare-provided speech generating devices to use their own funds to "upgrade" the devices. This allowed them to communicate beyond the confines of their room through email, internet, and text messages. After September, Medicare will no longer pay for any device that has the potential to be upgraded to allow communication outside the room

Currently, Medicare routinely denies coverage of the critical eye-gaze technology necessary by some people to operate these speech devices, even when its medical necessity is well documented. They have no way to communicate as a result. After years of waiting for an appeal to Medicare, the eye-gaze coverage is routinely allowed, but individuals should not be forced to wait years without a voice.
 

nebrhahe53

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I think we should file a class action lawsuit against Medicare as I cant see how they haven't violated the Americans with Disabilities Act.
The so called Jimmo lawsuit just forced Medicare to pay for rehabilitation services for people like us when Medicare had denied these services for ALS and similar diseases because there was no chance that anyone would get better.
 

Nikki J

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Mike thank you for working on this. I think the point Neil makes about not being able to upgrade to internet access even with your own money is important. Medicare never paid for that part but we could pay out of pocket now you can't and if you hack your eyegaze so you can and it is found out it is comfiscated
 

nebrhahe53

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How do you hack your eyegaze-id do it anyway and have a TV camera crew filming medicare trying to take it away. I say trying because there are members in my family that don't have ALS and I don't envy any Medicare bureaucrat who tries to get past them!
 

MaxEidswick

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Hi Max!

Paulette forwarded me your email asking about what we want Congress to do regarding SGDs, in short, we want them to sign on to the already circulating Dear Colleague letter requesting that CMS change its policies towards the capped rental program.

Here is the link for the Dear Colleague letter to send to your Reps - http://bit.ly/SGD-dc

And here is a copy of the National Office’s talking points for more info on the topic for you to look over - - http://bit.ly/SGDtlkpts

Today is the deadline for them to sign on, so please contact them as soon as possible! Thanks!

Hope you and Sandy are well! Miss y’all!

Warm regards,
Elizabeth
 
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