*This is a fictional column written by the father of Zoe, concerning funding of AAC devices.
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San Diego Sun Times

To Speak or not to Speak?
08.11.02

“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 how to function on a normal level. I must admit that I have never experienced the inability to speak, however I have experienced it secondhand. My oldest daughter, Zoe, was born with 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 will be incapable of describing her life in as little as two words.
I have never been one to complain, complain, complain, as referenced in the story above. But the fact is, my daughter needs an AAC device. The solution seems simple at first thought: 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.” (Golinker & Sheldon, 1999). 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 like my daughter who requires the use of Augmentative Communication. Yes, there are other models of AAC devices which cost quite a bit less than the laptop. Why am I so intent on my daughter having the best? First of all, we see this AAC device as a lifelong investment. After much research about devices, and with the guidance of our daughter's Speech Language Pathologist, my wife and I believe that the laptop device will be the best choice for my daughter. What is best for my daughter may not be best for someone else. In my opinion, it doesn't matter what device is in question. No matter the cost, a device that increases the quality of life for any person should have access to unrestricted funding. 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 (Golinker & Sheldon, 1999). 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. Would it be worth it? Absolutely. Will I do it? Most likely. Regardless of the outcome of our court case, I will see that my daughter gets the device that is best for her. I may have to get a second job, or apply for a loan, but seeing my daughter actually enjoy life will pale in comparison to monetary cost or sacrifice on my part. I was greatly encouraged after reading this statistic in the article I mentioned before: "Every Medicare AAC device appeal that has reached the ALJ hearing stage has yielded a favorable decision" (Golinker & Sheldon, 1999). 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 who reads this 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 this: One day 100%, unrestricted 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