ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, September 2, 2014

I Have Options. People With ALS Do Not.

It was pouring rain when I awoke this morning.

My early morning routine starts with a big pot of tea and my morning newspapers, read at the kitchen table as they were meant to be read.  It's a quiet time to read and learn and think that I've enjoyed since I was a child.  Real newspapers give me a good start to my day.

The papers had not been at the foot of the driveway for long when I went out to retrieve them in the dark this morning, and they were in a plastic bag.  When I picked the bag up, I knew today was not getting off to a great start.  The bag was heavy.  Two hours later the papers are still hanging on a clothes rack in front of a fan as I try to get them dry enough to read.  So much for my morning routine.

I am fortunate to have the digital option for my morning papers.  I have a good internet connection and can read the news that is drying in the laundry room.  If need be, I can pay to get behind the paywall for an interesting story, and I can even forward news to friends or write a blog post on something.  I have really good options.

Online I read a Washington Post story of Steve Gleason that was about much more than Steve Gleason.  It was about living a full and meaningful life with the assistance of technology, including the same internet technology and text editor that I use to write this blog.

Then I read a statement in the same newspaper from Medicare CMS about the devices that they are supplying to people with ALS.


A spokesman for the Centers for Medicare and Medicaid Services said last week that coverage rules relating to speech-generating devices are being reviewed but that no change or reinterpretation will reduce access for ALS patients who need them.
“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,” the spokesman, Aaron Albright, said via e-mail. “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.”

Say what?  Is this good news?  Nope.  Read again.  Read again.  Read again. Dad would say that this was written by a Philadelphia lawyer.  Read again.

CMS is supplying speech-generating devices.  They will generate speech.  They won't let you do anything else that requires "expanded functionality."  No internet.  No word processor.  No email.  And they'll make darned sure to uphold the rules so that speech-generating devices are as functional as the ones people got in 2001.

People with ALS don't have options like the rest of us.  They can't even turn the pages of a newspaper, and those who have received their Medicare-supplied devices lately can't even read the Washington Post online or see this blog.

The internet is their lifeline.  It's not "expanded functionality."

If there were ever an issue of respecting life in the United States, this is it.  We have vibrant, bright people who want to live their difficult lives to the fullest.  Boat-anchor speech-generating-devices that are "dumbed down" to prevent communication beyond speech in a room are simply morally wrong and a bad business decision on the part of CMS.  Why is the government purchasing technology with locks and blocks that is more expensive in the long run?

I'm grateful that I had the option this morning to jump online and read and give my two cents.  Doesn't everyone with ALS deserve as much?

1 comment:

  1. Thank you for writing this. The Medicare representative uses sly sneaky references to avoid the truth. Severely disabled are being denied access to non face to face communication and I one of them. This June I could not order an unlocked speech device (one that is open to the Internet) from the manufacturer because the manufacturer had been given a coverage reminder from Medicare stating that they will not reimburse manufacturer for any devices that have the Internet unlocked on their device per existing guidelines. Original Medicare rules state that in order for device to qualify, as speech device, it must not be able to be used for other computer activities like networking, internet access, installing software. Users had been able to pay manufacturer to unlock device at no cost to Medicare. Now, because of this coverage reminder, the manufacturer can not provide me with a device that is able to be unlocked to access internet or the manufacturer risks losing their ability to get any reimbursement from Medicare for that model speech generating device because of any infractions. And since April 1, I can no longer outright purchase and copay for a device, which would allow me to own and keep device through hospice. My only option is to do a capped rental of a locked speech device that meets Medicare locked guidelines (non upgradeable, no internet) and all capped rental equipment is repossessed while in hospital or hospice, leaving me without a device in my most desperate time.
    Medicare is forcing manufactirer to rent a speech device that is only capable of face to face communication - no email to DR, no pay Medicare bill online, no texting caregiver to come adjust breathing machine. That is the reality of Medicares current guidelines, if I don't have a caregiver within 10 ft of device, then I would have no voice. That' is what Medicare is forcing on our most severely disabled.

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