Saturday, August 23, 2014

Save Access to AAC Devices!!!

If you are reading this, you probably have access to the internet from either a home computer/laptop, an iPad/tablet, or a smartphone. You probably have WiFi or 4G access that allows you to email your friends, family, and colleagues or post about your day onto Facebook, Twitter, or Instagram. If your internet or wireless service goes on the fritz you can probably pick up your phone and call a technician to complain.

Congratulations!!!! 
You can communicate and participate in the world around you.

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Now, imagine that you do not have the ability to communicate at all. 
Zip. Zilch. Nada.

Many (if not most) individuals with disabilities/disorders like Rett Syndrome, ALS, Spinal Muscular Atrophy, spinal cord injuries (this list can go on and on) are not able to communicate verbally with the world around them. The very people that are responsible for their medical care, their meals, their clothing choices, their everything... operate on the assumption that they can decipher what someone else wants or needs. Sometimes that may be a slight smile, a tilt of the head, or a "look." But we are still just doing the best we can to pinpoint what they need/want.

My 3 year old daughter is non-verbal and sharp as a tack. We make a lot of guesses about what her needs and wants are on a daily basis. Sometimes we are right and sometimes we are very, Very, VERY wrong. We have attempted different forms of communication from low tech (picture cards) to high tech (iPad apps) and due to her limited hand control (thanks a lot Rett Syndrome) those forms have been less than successful.

Our hope was restored when we learned about a company called Tobii Technology. Tobii is the leader in eye gaze technology which allows people like Evie to communicate using their eyes. There is a lot of technical jargon that I can spout off, but basically the computer has fast cameras which track her eye movement and allow her to select words and activities. She can communicate!!! But the device cost between $17,000 and $20,000!!! OUCH! (the ability to communicate is priceless, but that still hurts)

video
Watch how well she is able to navigate.
This was the first time she had access to a Tobii for more than 15 minutes!

Now that very hope is being threatened with pending legislation for Medicare (their regulations quickly become industry standard) and we need your help.


The attack began in April 2014, when Medicare implemented a policy that denies patients the use of medically necessary speech generating devices (SGDs) upon admittance into a healthcare facility (hospice or nursing home). The one place that a person with complex medical concerns should be able to communicate with their caretakers, doctors, and loved ones.

On September 1, 2014, the second wave will become effective. Medicare will no longer fund a SGD that has the ability to connect to the internet. Previously, they allowed the user to "unlock" the internet feature at their own expense, but now that is not even an option. This means users will not be able to interact with anyone beyond the confines of their own room. 

NO email. NO texting. NO Internet. 
NOTHING! 

Lastly, Medicare's wait list for SGD-eligible beneficiaries who need eye gaze technology is YEARS long. Some individuals never get the chance to communicate with their loved ones or have meaningful input regarding the final stages of their lives because of this backlog. The routine denial of access to eye gaze technology is unacceptable. These people jump through all the hoops, cross all the t's and dot all the i's and still meet the brick wall that is Medicare.

Please read and sign the petition below and/or contact your local representative. Tell them that this legislation is not acceptable. Tell them that everyone has the right to communicate with the world outside of their home. Tell them that people have the right to talk to their doctors, nurses, caretakers, and loved ones. If you woke up tomorrow and could no longer speak to those around you and purposefully use your hands, wouldn't you want someone to fight for your right to have access to a speech generating device? Please help.

The deadline to sign is August 27, 2014.


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