Red Tape: The Hurdles I Face Trying to Obtain a Speech Generating Device

#AACAwarenessMonth is drawing to a close and the Dogers are in the World Series for the first time since 1988.  Today’s guest author, Sarah Morris, is a freelance writer for Major League Baseball Advanced Media where she regularly writes about the Dodgers.  In today’s article, Sarah shares the story of her struggle to fund an AAC system that would allow her to write and communicate more efficiently.

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Ever since I was born with the umbilical cord around my shoulder, everyone knew I would have problems. Although I began saying “hi” at nine months, my speech didn’t progress normally. I never have had hand use. I have been dependent on assistive technology to communicate since I knew what assistive technology was.
I didn’t start writing for myself until I learned how to use a headstick to access a regular computer keyboard or a portable electronic typewriter at fifteen. This was how I graduated from high school, earned my Associates in Art degree in both math and American history, and realized my dream of becoming a professional baseball writer. I knew there were speech generating devices (SGD), but they were expensive! My family couldn’t afford them, and I didn’t know how I would access them anyway. I thought I had it fantastic when I learned about software that gave me a voice.

About a year after I was hired by Major League Baseball Advanced Media to write a weekly column about my favorite team, the Los Angeles Dodgers, my neck began bothering me. I thought after using a headstick for sixteen years, it was the culprit, so I began investigating other computer access methods. This was when I was introduced to the world of augmentative alternative communication. Over the last fifteen years, I have used many devices. Thus, I have discovered what works for me and what doesn’t.

I recently gave up on using my headstick completely. It was causing too much pain and potential health problems. Of course, I tried scanning. Everyone can scan, right? I can’t without having pain in my neck and head, and it is slow and tedious that I can’t get my work done. My mind wanders in middle of a sentence. I’d rather watch T V shows and movies than write when I must scan, and this isn’t me. I am a workaholic. I began researching what was available for adaptive computer access. Although I need an understandable voice, there are many options for that if I can use a computer. In the past, I have tried eyegaze systems. Some worked for me, but they caused eye irritation. Now I thought I needed an eyegaze system. I can’t abandon using a computer. My computer or AAC device is my window to the world. Without it, I can’t work, stay inform on the news, communicate with my family and friends, pay my own bills, or watch movies independently. I am totally dependent upon someone else to entertain me. At 46, I don’t like being dependent on anyone for the things that I can do by myself.

Before I began to seek funding for a new computer access system, I wanted to investigate what was available myself. I have an idea what will work for my needs and need a professional who will collaborate with me and treat me as an equal partner in the assessment process. After all, it is unlikely that either a speech-language pathologist or occupational therapist has experienced what I face every day. I need a fantastic mouse because my job requires much internet research. Even though I don’t have much understandable speech, having a voice is secondary to be able to write what I need. I like having a language system, but I must have a fantastic word prediction dictionary that will automatically learn new words. I like having abbreviations since in baseball sometimes I have names such as Garciaparra. Spelling this name was tedious, so I abbreviated it as “gp.”

Having easy access to my computer is essential. During my investigation, I had the help of WATR (Wyoming Assistive Technology Resources, the state Assistive Technology Program). This agency loaned me equipment to try. I learned that I didn’t want an add-on eyegaze system to an existing computer because the equipment didn’t interface with adaptive software well enough for my needs. I chose a 15” dynamic display SGD with eye gaze capability because a bigger screen has bigger buttons, which were much easier and faster to hit for me. This dedicated SGD me feel independent. I gained more confidence in my ability to communicate and be an independent adult.

While having an evaluation from a speech-language pathologist is required for Medicare and Medicaid funding, I have had bad experiences in the past.  In one instance when speech-language pathologist was working with the vendor to help me try the most updated equipment they ignored my questions while they talked among themselves. If I can impart any wisdom to a speech-language pathologist reading this, it is that I wish to be considered part of the assessment team and included in any conversation about system selection.

The hoops that consumers must jump through to navigate the system were frustrating and exhausting, and working with a government agency requires persistence and self-advocacy.  I emailed the Wyoming Department of Vocational Rehabilitation describing my need for a new communication device so I could do my job. I hadn’t realized that Vocational Rehabilitation is supposed to explore alternate avenues of funding under a provision in the Rehabilitation Act called “comparable benefit”.   Imagine my frustration when, after two weeks, my counselor emailed me excitedly saying that Medicare will pay for my new communication device.  That was right back where I started.

Unfortunately, I still don’t have a reliable and independent communication system.  To make matters worse, my favorite team, the Dodgers have the best record in baseball. They are in the World Series for the first time since 1988, and I have dreamed about writing about this since I was twenty-three. With the technology I have available to me now, I don’t feel like I can do my best work. I don’t feel like I am an independent adult who has accomplished a lot despite my significant physical disabilities. I feel that my difficulty obtaining the device I want is holding me back from reaching my full potential. This isn’t correct for anyone. Yes, the new device is expensive, but with it, I believe I can do everything that I want and need to accomplish.

I feel so frustrated and helpless by all of the government bureaucracy I have faced but I am dependent on governmental programs for my survival. I was taught to believe in the American way. If I work hard, I can achieve anything that I want to despite being physically disabled.

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Sarah Morris is a woman with quadriplegic cerebral palsy who is unable to communicate using her speech. She is a freelance writer for Major League Baseball Advanced Media since 2001. She also has written a novel Vengeance available from Amazon. To do all this, she uses an AAC software and adaptive access.

Editor’s Note:  Your state assistive technology program may have additional information about public and private funding sources.  Locate your state program at https://www.at3center.net/stateprogram

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Jill E. Senner, PhD, CCC-SLP
SpeakUP
Editor-in-Chief