*This is one of the journal entries written by Zoe, the 13 year old girl who needs an AAC device. I'm really not sure if I am where I want to be with this genre... but I am anxiously awaiting the peer reviews.
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7.01.02

It’s the ending of another day, the beginning of a new month. It’s a wonder that I can write in this journal everyday. What could I possibly have to write about? I rarely ever have anything fun to write about. I guess I use this journal as an outlet for my grief and frustrations. You know, it’s funny—I have only been alive for 13 years, yet most days seem to drag on endlessly.

I had an appointment with a new Speech Pathologist today. Her name was Ms. Fredeking. It was almost refreshing to meet someone else who is single. My parents keep telling me that one day I will find the man of my dreams….but I guess the question really is: Will he find me? It’s funny to listen to my grandmother when I bring up “men.” She keeps reminding me that I am just a “youngin’”…..too young to be worrying about men. But what else is a grandma supposed to say? She is just looking out for her first (and favorite) grandchild! J Anyway, back to therapy….. Ms. Fredeking was nicer than I had expected. Unfortunately, my record with Speech Paths has not been that great. I can only think of one other who I even remotely liked. Maybe today was the “beginning of a beautiful relationship..” Today we spent most of the time getting to know each other. It was a nice break from most of the sessions I have been to. In the near future, we are going to discuss the possibility of getting me an AAC device. I’ve heard a lot about AAC devices, and they sound so cool! I can’t imagine what it would be like to be able to communicate with my family. Maybe if I get a device, I can make some friends. Ya know, a girl shouldn’t have to go through life without any friends. Who else are you supposed to talk to about boys…. I’m still dreaming about going to my very first old fashioned slumber party. My sister goes to them all of the time, and I am jealous. She always talks about how much fun she has, and how she can’t wait to go to another one.
But only one thing stands in the way of an AAC device…… MONEY. I don’t really know what the price tag is, but from the way my parents were talking, I guess it isn’t pretty. They were both talking about getting part time jobs in addition to their full time jobs. I know that they want what is best for me, but I’m not sure its worth it. Let’s face it. I will never be normal. My needs are met. Even though it would be nice to have a new device, the possibility is slim. Ms. Fredeking was telling my parents to look more at the benefits rather than the cost. I overheard her tell them that focusing on the cost would prove to be overwhelming. I should say so. But it’s kind of hard to look at anything else. I guess we will just have to wait and see what happens.
Therapy was the only time I spent out of the house today. When we came home, I saw a group of girls chatting under a big shade tree. I so wanted to be a part of the group/ I think I have figured out why my days drag on forever……I spend most of my time thinking about what my life could be like. I know I will never experience any of it, but dreaming is the only outlet I have right now. Sometimes I wonder how my parents handle the stress. I’m sure that having 5 “normal” kids proves to be stress enough, not mentioning what I add to the heap. I wonder if they dream about the “empty nest”. If I don’t find me a man someday, the nest may never be empty for them….

Well I guess that I have written enough for one day. Maybe tomorrow has something exciting in store for me…

*This is a column written by the father of Zoe, concerning funding of AAC devices. I tried to write it from a father's perspective, and without too much "professionalism." He is just an average father, on an average income who is seeking to enrich his daughter's life.
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“It takes a disciplined spirit to endure the monastery on Mount Serat in Spain. One of the fundamental requirements of this religious order is that the young men must maintain silence. Opportunities to speak are scheduled once every two years, at which time they are allowed to speak only two words.
One young initiate in this religious order, who had completed his first two years of training, was invited by his superior to make his first two-word presentation. "Food terrible," he said. Two years later the invitation was once again extended. The young man used this forum to exclaim, "Bed lumpy." Arriving at his superior's office two years later he proclaimed, "I quit." The superior looked at this young monk and said, "You know, it doesn't surprise me a bit. All you've done since you arrived is complain, complain, complain.
Exaggerated? Maybe. What if you were asked to share two words that describe your Life? Would your focus be the lumps, bumps, and unfairness, or are you committed to dwell on those things that are good, right, and lovely?”

I would surmise that most people can not begin to imagine what life would be like without the ability to speak. Speech is such an integral part of our daily lives, and without it we wouldn’t know what to do. I must admit that I have never experienced the inability to speak, however I have experienced it secondhand. My oldest daughter was born with a "mild" case of Cerebral Palsy. Due to the CP, she has been unable to speak since birth. Her language is well intact, in that she is able to express herself through writing. While she is thankful to be able to read and write, her lifelong desire has been to speak. The only possible method available to help her speak is an Alternative Augmentative Communication (AAC) device. And without an AAC device, my daughter would be incapable of describing her life in as little as two words.
I have never been one to complain, complain, complain. But the fact is, my daughter needs an AAC device. The solution seems simple enough: Go out and buy one. However, there are a few obstacles standing in my way. First of all, the price of a high quality AAC device is upwards of $4000….that’s not just pocket change for the average American family. Medicare will cover the cost of some AAC devices, but not all. I believe that there should be funding available to cover all types and models of AAC devices. The AAC device recommended by my daughter’s Speech-Language Pathologist is programmed through a laptop. This is where Medicare holds up a red flag, so to speak. According to the third regulation listed by Medicare for Durable Medical Equipment (DME), the AAC device must “generally not [be] useful to an individual in the absence of an illness or injury.” I understand that a laptop can be beneficial aside from using it as an AAC device. However, my daughter needs it to function on an everyday basis. As a parent, I am more concerned about my daughter’s ability to communicate rather than my ability to check my email or do office work at my home. The laptop AAC devices have proven to be most beneficial to a person who requires the use of Augmentative Communication. It would not surprise me to learn that there are some people who would have their AAC laptop device funded by Medicare, and then use it for other purposes. But I do believe that we would find that statistic in the minority, if at all. Why should those who truly need the device be punished for the actions of a few? I recently read an article that stated: “Medicare will pay for AAC devices only when the beneficiary has a hearing before an administrative law judge (ALJ).” So instead of being able to apply for coverage under Medicare for my daughter’s AAC device, I must first go before an ALJ and present my case. Will it be worth it? Absolutely. In fact the same article published this statistic which gives me hope: “For the past 6 years, every Medicare ALJ decision for an AAC device has approved funding!” This statistic alone proves that the Administrative Law Judges are attesting to the fact that AAC devices are beneficial and necessary to those who need it. I challenge everyone to live one day of their life without talking. I dare say that most people will not be able to complete the task. My daughter spends everyday of her life without speech. She has no way to express her wants, needs, desires, feelings, or emotions. Imagine how enriched her life would be with access to an AAC device.
Having said that, my goal is not to focus on the “lumps, bumps, and unfairness” in life. It is because of my unending love for my daughter that I write this column. I want to make people aware of funding for AAC devices, in hopes that some will become advocates for the cause. My vision is that one day 100% funding will be readily available to all who need it, without having to endure court dates and trials. Think about it for a minute. We are talking about the life of another human being who is unable to even plead their case before an ALJ. What more proof do we need? AAC devices are a prerequisite for daily living, especially in the life of my daughter.

S. Mackinroe
Purplestine, Ohio