by Kathy Smith, MSPA, CCC-SLP/L (Speech-Language Pathologist, retired); NWACS Vice President

reading time: 3 minutes

The views expressed in this post are that of the author and do not necessarily reflect the views and policies of NWACS. No endorsement by NWACS is implied regarding any device, manufacturer, resource, or strategy mentioned.

“Communication devices opened the world for me.”

Sharon Jodock-King used her communication system to produce that powerful statement. Sadly, Sharon passed away in January at the age of 81. The Seattle Times has since published three articles about Sharon’s life, including this obituary (2/10/22). Sharon was part of many disability rights organizations and committees throughout her life. The list is amazing. How did she participate in all those city, state and national committees while being unable to walk or ‘talk’? Let’s begin at the beginning.

1977 was a difficult time for people with severe physical disabilities like Sharon and her husband Alan (who passed away last year). They could not ride public transportation - no wheelchair lifts; could not go for a walk - no curb cuts in sidewalks; could not serve jury duty, hold a paying job, or live independently because their speech was not intelligible. The list of ‘could nots’ was long for them! Then electronic communication systems with speech output started becoming available. Sharon’s life changed dramatically in 1978 when she began using her first speech output communication system: the HandiVoice 120. With the support of her speech output communication systems, Sharon began tackling many of those ‘could nots’.

Over time, Sharon garnered a consistent core group of people who kept her connected to functioning communication systems. She was adept at keeping this core support system, who often volunteered their time and services. And this eclectic group of people ensured her access to communication so she could tackle those ‘could nots’. Together, we were all AAC pioneers.

She and I were a ‘team’ through the years, researching speech output communication systems that would best meet her needs as old ones needed replacing. We experienced wonderful moments together, as well as maddening moments. Let me explain, because I believe there are still maddening moments that affect best outcomes for AAC users. Due to her high level of communication needs and physical disability, Sharon used sophisticated and expensive communication systems. Medicaid, her primary funding source, presented huge problems. Particularly in the early years when Washington State Medicaid was unfamiliar with electronic speech output communication systems. Medicaid did not seem to understand why people needed such ‘luxurious and expensive’ communication systems. Sometimes I even had to present my justification to a judge. Thus, it might take a year or more to obtain funding approval for a communication system.

After obtaining the system, we had to mount it on her wheelchair. Sometimes I could find rehab engineering services, but because of funding, that became a problem. The last mounting system Sharon used was made by her Dad! And she was so proud and happy with it. Over the years, friends helped her maintain it.

In the beginning, Sharon needed some assistance from me to plan the layout of each new communication system and to program messages. Insurance funding strictly for programming a system was (and remains) difficult to obtain. By her third communication system, Sharon was such a whiz at it that she enjoyed designing and programming most of it herself. However, other people such as her husband, need much more programming assistance. Does insurance pay for such support? I usually had problems getting insurance to fund programming.

Like Sharon, AAC users need immediate support when a communication system breaks down. Now a days, how speedy can a speech-language pathologist try to get funding to repair a device? Sharon and others in her situation need immediate repair assistance, especially as they age and become more medically fragile. How did Sharon, her husband and I solve these problems over the years? I took the easy route. I donated my time and services to them. We became friends as I volunteered my time mostly in the evenings after work. Even though I have wonderful memories because of my experiences with Sharon and Alan, I know volunteering does not address the need for insurance companies and other funding sources to be more accountable to support people with these needs. And that is my biggest regret. But I sure had lots of fun being able to meet Sharon’s and Alan’s communication needs efficiently for so many years!

Reflections from Robin Sanford, SLP (she/her/hers)

reading time: 3 minutes

The first time I met Sharon and Alan, I was working as a support staff for PROVAIL. I was 19, and my supervisor asked me to fill in at another house. I showed up and found out I was going to a wine fundraiser hosted by PROVAIL. I met Alan, this middle-aged, spunky gentleman who greeted me with a joke from his communication device, and Sharon, his wife who had a great sense of humor and told me to give Alan all the wine he wanted through his feeding tube. About 20 minutes and two-and-a-half glasses later, Alan was red-faced, sweating, and soon snoring at the formal event. I learned two lessons that night: give alcohol slowly when it’s going through a feeding tube, and these two people are a lot of fun.

A couple of years later, a spot opened up for the supervisor position at Sharon and Alan’s home. I begged my supervisor for a transfer. My very first day in the home, Sharon found a bird outside that had been attacked by their cat. Sharon and one of her favorite staff had the bird on her communication tray and were putting Neosporin on the bird’s wing. Unfortunately this story doesn’t end well, but it sure was an interesting way to start my time working at their home.

Alan was a bull. He used a high-tech communication device to communicate. He did not have use of his arms, so he used his foot to access his communication device. He also drove his wheelchair this way. Alan had the best music and jokes; he went downtown to sing and often came home with wads of cash. Alan also broke his device on the regular. He would mess up the programming, mess up the wiring, smash his foot plate, and damage the mouse. This led to me meeting Alan’s support team, including Kathy Smith, his long term SLP.

While Alan taught me the importance of knowing my way around an allen wrench and soldering kit, Sharon showed me how independent a person could be with access to a communication device. Sharon accessed her device with her left thumb, and had her device in a custom-made lap tray that fit on her wheelchair. The top of her tray had a built-in letter board that she used for a quick word here and there and also as a back-up if her device was in need of repair. Sharon used her device to write speeches and participate in self-advocacy. Her voice took her to the Center on Human Development and Disability (CHDD) at the University of Washington, Olympia (WA), and even Washington, DC. I was lucky enough to accompany her on these trips. Sharon was a force of nature and used her voice to benefit others and blaze a path for all people with disabilities.

I worked for Sharon and Alan for over ten years. I got to support them with their communication devices when Kathy was not available. Alan and Sharon became family to me. Eventually, I realized that I needed to follow in Kathy’s footsteps. I wanted to be a speech-language pathologist and help people access their voices. Sharon and Alan supported me all through grad school, and were some of the first people to know I had passed the Praxis (a big test required to become fully certified)! I loved going to see them and telling them about my successes and failures.

Sharon and Alan taught me so much about communication and life in general. Sharon taught me to be tough and to fight for what I believed in. Alan taught me to come at life with a sense of humor and to be resilient when life gets tough. They both showed me the power of communication and helped me to find my dream career. I learned so much that I have applied to my career: the importance of finding the best access method for a device, how to think creatively when a person is truly a puzzle, to always presume competence, and how important it is to work as a collaborative, multidisciplinary team for the best success with AAC. I know I would not be the person I am today without having them in my life. They were my grandparents, and were loved beyond measure.