Medicare CMS Rules for Speech Generating Devices

[rknt50a]

From the Washington Post --

ALS patients face loss of Medicare coverage for devices ALS patients face loss of Medicare coverage for devices used to help speech - The Washington Post

"But unless CMS changes its interpretation by December, the delay doesn’t make much difference, Wildman said."

The article accepts comments. I suspect that people at CMS read the Washington Post. Please chime in with comments if you are able. That just might be a lot more effective than sitting back and waiting (something that that has made this problem linger far too long already).

Thanks, all.

 

[rknt50a]

Following is from Center for Medicare Advocacy. They're on the Speech Generating Device case and I like their attitude. Don't mess with PALS.

Please pass the following to any PALS who may have encountered one of the situations they describe.

Thanks very much.
______________________________________________________

We Need Your Speech Generating Device (SGD) Stories!
[email protected]


Thank you again for taking action to preserve the voices of those in need of Speech Generating Devices. Because of your advocacy, CMS is currently reviewing its SGD policies. We are hopeful that CMS will revise these policies to allow SGD users to keep their speech when they’re admitted into health care facilities and be able to use their SGDs to communicate with the outside world.
However, in the event CMS does not reach an acceptable decision about SGDs, we are considering action to help people who will lose access to SGD communications.
If you, or someone you know, have been harmed by these policies, please contact us at [email protected]. We are gathering information and data from anyone who wants to be heard, but we are particularly interested in those who can share stories because they have been affected by any of the following:

• They experienced problems keeping their SGD since capped rental payments went into effect.
• They experienced problems getting or keeping non-speech communication functions on their SGD in 2014.
• They experienced problems getting or keeping environmental control functions on their SGD in 2014.
• CMS denied their request for eye-tracking, or other SGD attachments in 2013 or 2014.
If you or someone you know can answer "yes" to any of the questions above, please contact us at [email protected]. Include the name of the SGD user, email address, phone number, street address, and a summary of the experience. We will not use any of the information you share without your express permission.

Every story we receive helps us advocate to maintain the voices of our most vulnerable citizens. Thank you for your continued support of all those affected by CMS’s SGD policies.

Kathy Holt
Associate Director/Attorney
Center for Medicare Advocacy
For more information see:

• "ALS Patients Face Loss of Medicare Coverage for Devices Used to Help Speech," Washington Post, October 26, 2014.
"Medicare's Reluctance to Embrace Technology: Effects on the Coverage of Speech Generating Devices," (CMA Alert, June 5, 2014).

 

[krnNdug]

I just got this reply from one of my Senators (looks like I can't paste it)...not sure it means much, but it seems that they are taking some action, they sent a letter to CMS on September 11...I am the subject for a documentary on ALS for students at the local university and they are appalled that CMS did this also and are signing petitions also...we need to keep pressing...

any idea on how I can paste something?

 

[nebrhahe53]

Sent a note into the people advocating against the changes. they said they are prepared to sue medicare for a violation of the ADA if they go through with the changes.

 

[MaxEidswick]

>any idea on how I can paste something?

several ways:

1. post not w/o url, edit note add url save post
2. put copy in psate buffer, open new doc, paste special text only, cut & paste onto forum
3. ut in word doc, save as pdf, attact pdf

there are a bunch more ....

 

[krnNdug]

thanks Max, I figured you would know...

 

[MaxEidswick]

fyi:

SGD Changes: What They Mean for People with ALS

Dear Max,
Last week, we shared with you the great news that the Centers for Medicare and Medicaid Services (CMS) has rescinded the "coverage reminder," which was issued last February and would have prohibited Medicare from covering speech generating devices (SGDs) that included functions such as email and internet access. While this is an important victory, it only is one step forward and we have much more work to do.

Therefore, we want to take this opportunity to let you know about the next steps and how you can help. We also want to make sure everyone understands what CMS' latest action means for people with ALS and what it does not mean.

What it means:
Medicare had planned to prohibit coverage for SGDs that had the capability of performing non-speech functions, including email, texting, internet access and environmental controls. Such devices would not have been covered by Medicare even if a person with ALS paid for those technologies out of pocket and even after they owned the device. This policy no longer will take effect on December 1. Instead, CMS plans to revise their SGD coverage policy, known as a National Coverage Determination (NCD), and has opened a 30 day comment period ending the first week of December. During this time, the public may submit comments to the agency. CMS will review those comments and has indicated that the agency intends to finalize a revised NCD by the end of July, 2015. In the meantime, people with ALS have access to SGDs that have the potential to be "unlocked" to permit access to non-speech technologies. However, this does not mean people have the ability to unlock devices immediately.

What it does not mean:
As just mentioned, rescinding the coverage reminder does not necessarily mean that people with ALS now can unlock SGDs to permit access to non-speech functions. That's because in April, 2014, CMS implemented a "capped rental" payment system for SGDs, meaning that people with ALS must rent SGDs for a 13-month period before they own the device. During this rental period, it is not yet clear whether Medicare will allow SGDs to be unlocked. The Association has requested clarification from CMS on this issue and has urged CMS to permit devices to be unlocked during the rental period. We will share any response as soon as possible.

Rescinding the coverage reminder also does not guarantee that the final NCD that is expected to be issued in July 2015 will ensure access to SGDs and non-speech technologies. We still have more work to do! (see next steps below)

Rescinding the coverage reminder also has no impact on the two other issues that threaten access to SGDs: capped rental and coverage for eye tracking technology.
• Capped rental: In addition to potentially prohibiting devices from being unlocked during the rental period, capped rental threatens overall access to SGDs. If a person is admitted to a hospital, skilled nursing facility or hospice during the 13 month rental period, Medicare no longer will pay the rental fee, forcing a person with ALS either to pay the cost out of pocket or to return the SGD and obtain a new one from the facility to which they have been admitted; however, those facilities do not currently provide SGDs, nor do they have the expertise to deliver a customized SGD.
• Eye tracking: Over the past year, Medicare has routinely denied coverage for eye tracking, which can make it impossible for some people with ALS to utilize an SGD.
Next Steps:
The ALS Association continues to help lead a coalition of organizations working to ensure access to fully functioning SGDs. That coalition includes the American Speech-Language-Hearing Association (ASHA - represents speech-language pathologists), SGD manufacturers and others who worked on SGD coverage policy since before its inception in 2001. Through this partnership, we are presenting a unified front to CMS and are working in a collaborative and strategic way to address each of the three issues impacting access to SGDs. Next steps include:
• Comments: Working with our coalition partners, The Association is developing recommendations for how CMS should change the NCD to assure patients have immediate access to SGDs and to non-speech functions such as email, the internet, text, telephone and environmental controls. These recommendations will include changes to the NCD that help ensure coverage for eye tracking technology.
• Your help is needed: As The Association develops recommendation to CMS, we also will send an action alert letting you know how you can help, including sample letters you can send to CMS during the comment period. Please keep an eye out for this alert in the coming weeks.
• Capped Rental: Since CMS' latest action did not address capped rental, The Association continues to work with CMS, our coalition partners and with Members of Congress to make sure that this new payment system does not in any way restrict access to customizable SGDs or to non-speech technologies. If necessary, The Association is prepared to pursue legislation to compel CMS to fix the problems with capped rental. The Association also is prepared to pursue legislation if the NCD expected in July 2015 does not address the other issues impacting SGDs.
While we have made important progress in rescinding the coverage reminder, it is clear that more must be done. Thanks to your efforts, including helping to urge 200 Members of Congress to join our fight, we have made a difference. We are confident that through your continued advocacy, we will succeed and ensure people with ALS have access to the SGD technologies they need when they need them.

Please keep an eye out for additional information about this important issues, including our action alerts.

Thank you!

 

[rknt50a]

Mission not accomplished completely.

Medicare CMS has an open comments period to get citizen input on moving forward. They need to hear that communications are about more than Speech Generating Devices. They need to know that we must never get in another mess where they want to deny access to the internet to PALS. They need to know that communications involve more than speech generation. The open comments period ends December 6.

Only 51 comments have been submitted to the government website as of this morning. We need many, many more than that to get their attention!

Please submit your own comments and ask everyone you know to chime in. Thank you.

Medicare Coverage Document (MCD) for Speech Generating Devices

 

[krnNdug]

I posted the link to my Facebook page and made and asking people to comment. Please post on yours if you feel up to it.

 

[affected]

I've posted this to the CALS fb group I'm in, and the past CALS group too.

I hope this gets sorted, SO important!

 

[rknt50a]

It's literally a "speak now or forever hold your peace" moment. Many more comments are needed to make the point that communications for a person with ALS are far more than generating speech in a room. Thanks for getting people to comment, even just one or two sentences. Volume matters during these public comments periods. Thanks.

Medicare Coverage Document (MCD) for Speech Generating Devices

 

[Nikki J]

Do you know if they go to mod for an extended period? I commented yesterday am and it said it was accepted? But still not visible ( and the count is only 6 more than yesterday which I find hard to believe) are other people's comments showing up?

 

[nebrhahe53]

I find it very hard when commenting not to call these bureaucrats idiots and heartless. I dont know if comments like that would make things even worse.

 

[affected]

Neil a short comment just saying why you would want an unlocked piece of equipment would be a valuable comment. Don't even think about giving an opinion about politics, just giving an opinion about what a SGD would need to do for you.

 

[rknt50a]

bump

This single action that you and all your friends, family can take this weekend will probably make a bigger difference to the everyday lives of people with ALS than buckets of money.

Please submit comments to Medicare CMS about the necessity of communications technologies for people with ALS.

ALS Advocacy: Please Speak Up So That People With ALS Are Not Silenced

The deadline for comments is December 6. We need to bombard them with comments. Please make your comments and ask others to do so, too. Please. Thanks.