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.

***********************************************************************

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.


Find your local representative:

Find your senators:

Friday, August 8, 2014

Wheelchair Faux Pas. Oops, My Bad.

Suffice to say that Evie sitting in a wheelchair is pretty normal for us. It wasn't always like that. There was a time when the thought alone would reduce me to tears. Now it has become so normal that I sometimes forget that it isn't everyone else's normal.

One afternoon (around Christmas), I allowed a friends daughter to sit in Evie's wheelchair. She is a year older than Evie. She can run, talk, feed herself, hold a cup, sit on a potty, and swim. She is "normal." She is also curious (most pre-schoolers are) and thought sitting in Evie's chair would be great fun. I encouraged it, even said they could take a picture (which her mother reluctantly did, but I doubt she kept the pic). It never crossed my mind that seeing her daughter sitting in a wheelchair might not be a memory in the making photo op for her. Oops. My bad. I didn't think of it that way because I didn't see the situation through her eyes.

Here's what I saw.

  • I saw an opportunity to show a little girl that wheelchairs aren't bulky pieces of equipment to be afraid of or shy away from. They are just chairs with awesome wheels. Evie's chair is extra awesome because it's raspberry pink! 
  • I saw a smile spread across her face and a twinkle in her eye at the prospect of sitting in that awesome seat that is custom made for my girl. 
  • I saw her laughing, just like Evie does, while sitting in that chair. 
  • I saw her not thinking about how sad it was for Evie to need a wheelchair (a rare occurrence).

A child's acceptance is a precious thing. My friend's daughter didn't know, or understand, what that wheelchair symbolized to the adults around her. She didn't care. She just accepted it for what it was…a chair. But, that won't last forever. She'll grow up and the understanding will come.

I am confident that her parents will teach her that people who need medical equipment are people just like her. They aren't someone to be afraid of or ignore. I wish I could say that about all parents.

I have accepted the wheelchair. I don't like it, but I have accepted it. I have also accepted the looks we receive from those around us. I don't always like those either. If I manage to catch their eyes I give them a big smile (most days). If the opportunity presents itself, I will introduce them to Evie. Is it easy? No. Does it help? Maybe. Will they see my daughter and not her chair? Absolutely.