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)

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.

GP2C: Save Access to AAC

Find your local representative:

http://www.house.gov/representatives/find/

Find your senators:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Venting and a Hot Shower

Sometimes I am not a well adjusted Mom. I have been known, on occasion, to join Rae during one of her screaming fits or cry while I hold her when there seems to be no end to her tears. It stems from a deep seeded frustration over not being able to figure out what she wants or needs. Sometimes it feels like she is doing it just to throw a wrench in the cogs (which is silly to feel). It sucks!

I am sure most parents out there can relate to this overwhelming sense of agitation and helplessness when faced with an unconsolable child, but there has to be a better way to deal with it than joining in Rae's temporary madness. Lately, it has been happening in the morning during breakfast and again an hour later.

Currently I have four options (not in any particular order after 1):

1. Run through the check list (clean diaper, hunger, thirst, pain, gas, temperature, etc...). I always do this first in hopes that I can nip the fit in the bud.
2. Lose my cool and screech along with her singing a tune no one wants to hear.
3. Place Rae in her crib, shut the screen door, and seek refuge in the peace of a hot shower.
4. Open up the waterworks and have a good crying session.

I feel horribly guilty when I opt for the second and third choices.

Once the checklist has been exhausted and the fit is still moving ahead at full steam I continue down the list and decide on the next plan of attack.

Screeching like a bird with her is counter productive for both of us. It doesn't make the frustration stop nor does it truly offer any sense of relief...only more frustration and guilt over screeching like a mad woman. So, now I am trying to curb this ill advised, ineffective behavior and have sense found other options better suited to our needs.

Leaving her to fend for herself and teaching her to "self soothe" can be equally stressing because I want to be there for her. I want to hold her and tell her it will be okay. Wipe the tears from her cheeks and make whatever ails her cease. I want to fix it! But I can't. There are times when it just seems best to let her vent. We all have to vent sometimes and Rae is no different. When all other courses of action have been tried and ended in failure, then it is time to let her scream it out. Eventually, she falls asleep, usually after I hop in the shower, and when she wakes up from her nap all is right in the world again (or at least in our home).

Since I'm a firm believer in the cleansing power of good cry, I don't have a problem joining Rae when she is on a tear bender. Of course these occasions are few and far between because the incessant crying has to go past an acceptable (in my opinion) fifteen or twenty minutes and usually no one else can be around to help alleviate the pressure (Dad or Mimi). Eventually, we both calm down and are able to move forward with our day.

I frequently utilize the third option...letting her vent. There is no sense in my fuse blowing because hers has already blown. After I have exhausted the checklist and if I'm not in need of a cry, I leave her to her own devices. She mumbles, whines, screeches, cries, and cusses me out in her own adorable baby talk fashion. We are working on finding and teaching her different ways to communicate more effectively (sign language), but until then we're going allow her the time to vent and I'm going to take a nice hot shower.

Here's a mealtime fit for your viewing and listening pleasure...