Written by: Julia Franklin, CLO
When discussing the role of assistive technology (AT) in enhancing the lives of individuals with disabilities, it’s essential to recognize the power of collaboration. The combined support of loved ones, community organizations, and various AT products ultimately fosters independence and improves quality of life.
Recently, I gathered a group of professionals to discuss our insights on navigating assistive technology and the importance of community support and collaboration through our shared experiences.
Rex Garrison, a real estate professional living with Amyotrophic Lateral Sclerosis (ALS). ALS is a neurodegenerative disability leading to muscle weakness/loss and eventually paralysis
Alexa Garrison, Rex’s daughter & a recent college grad in electrical engineering
Courtney Andrews, a speech-language pathologist (SLP) from East Tennessee State University (ETSU) Health Gary E Shealy Memorial ALS Clinic
Trey Hardie, Care Services Coordinator from the ALS Association.
Defining Assistive Technology
Assistive Technology includes any item, piece of equipment, or software that improves the functional capabilities and/or independence of individuals with disabilities. This encompasses a wide range of devices such as mobility aids (wheelchairs), adaptive utensils, switch-activated devices, computer software, augmentative and alternative communication (AAC) devices, smart home devices, and more.
Rex Garrison’s Journey with ALS
Mr. Garrison is a Certified General Real Estate Appraiser in Tennessee and Virginia. He serves on multiple community boards and leadership committees at the state and community level. As an active professional, one of his primary goals after his ALS diagnosis was to continue working and serving his community as long as possible. Assistive technology of various kinds has been his avenue to do so. He also serves on Cephable’s user advisory board, The Consortium.
Rex’s journey with ALS has highlighted the importance of starting small and gradually integrating more sophisticated AT as he has slowly lost mobility throughout different parts of his body. “I started losing my arms and hands first, so I began looking for devices that could help me button my shirt, zip my pants, etc. It started small, and it just keeps getting bigger,” Rex shared. “Work wise, the type of work I do [in real estate] is a combination of physical and technical. And the physical is starting to play a factor. I’ve transitioned from using a walker into a power chair on some inspections,” Rex explained. While in the office, computer access is a primary part of Rex’s business life. Software like “Cephable has allowed me to use the click button and voice controls” to continue navigating various productivity programs with his voice instead of the keyboard & mouse. He’s now exploring an eye gaze system as he anticipates the progression of ALS and not being able to rely on his voice in the future. His journey illustrates how AT can evolve to meet changing needs, from simple tools to more advanced devices.
“I started losing my arms and hands first, so I began looking for devices that could help me button my shirt, zip my pants, etc. It started small, and it just keeps getting bigger,” Rex shared. “Work wise, the type of work I do [in real estate] is a combination of physical and technical. And the physical is starting to play a factor. I’ve transitioned from using a walker into a power chair on some inspections,” Rex explained. Software like “Cephable has allowed me to use the click button and voice controls” to continue navigating various productivity programs with his voice instead of the keyboard & mouse.
Role of Family Support
Alexa Garrison, Rex’s daughter, is a pivotal figure in his journey. She is an electrical engineer and very motivated to stay educated on the different types of assistive technologies available. She has spent hours researching the most innovative and cutting-edge options to support her dad’s independence at home and at work. She has worked alongside Rex and set up multiple types of AT hardware and software to fit his needs. In our conversation, she emphasized the importance of perseverance and adaptability when learning to use AT.
“Assistive technology is such an amazing tool. It’s not just about the device itself but learning how to use it and integrating it into daily life. It’s improved my dad’s quality of life significantly,” Alexa noted. “My dad said that this [journey with AT] has stretched his patience a lot more than he ever has had to stretch it,” Alexa shared, highlighting the emotional and mental effort involved in adapting to new technologies. Her role underscores the critical support that family members provide in navigating and optimizing AT solutions as well as shouldering pieces of the physical & cognitive loads that often come along with learning any new technology.
“Assistive technology is such an amazing tool. It’s not just about the device itself but learning how to use it and integrating it into daily life. It’s improved my dad’s quality of life significantly,” Alexa noted.
Professional & Community Resources
About the ETSU Health Gary E Shealy Memorial ALS Clinic
One of Rex’s early community resources and education centers that he discovered was the Gary Shealy Memorial ALS clinic in his community. They offer a multidisciplinary approach to the care of people diagnosed with ALS. This clinic represents a holistic model of care, bringing together various disciplines to provide an all-in-one clinical experience without the need to travel to multiple appointments. The disciplines represented onsite include neurology, respiratory therapy, physical therapy, occupational therapy, speech-language pathology, dietitian/clinical nutrition, pharmacy, social work, assistive technology professionals, and an ALS Association liaison. All that is required to attend the clinic is a diagnosis of ALS. There are multidisciplinary clinics like the one at ETSU all over the United States supported by the ALS Association.
The Role of the ALS Association
Trey Hardie, one of Tennessee’s ALS Care Coordinators, highlighted the extensive support provided by the ALS Association. “We’re dedicated to providing you and your loved ones with the information, support, and tools you need free of charge,” Trey explained. The association helps individuals through family support, equipment and assistive technology consultation, resources, referrals, and education.
Personalized Approaches & Overcoming Challenges in AT Adoption
In our conversation, Courtney Andrews, clinical coordinator and SLP for the ETSU ALS clinic, highlighted the importance of personalized approaches when introducing AT. “It’s really about what the individual needs and what their goals are. For some, it might be a text-based communication device, while for others, it might be more about mobility aids. Personalization and early introduction of AT are key,” she said.
She also pointed out a common challenge in the adoption of AT: the misalignment between the device’s complexity and the user’s comfort level with technology. “If we have somebody who’s not comfortable with the computer and never used one, am I really going to set them up with a $16,000 eye-tracking computer device? No, because it’s going to come back to me in the box never opened,” Courtney emphasized. This highlights the necessity of matching the technology to the user’s capabilities and ensuring they feel comfortable, confident, and supported using and customizing it as their disability progresses or changes.
One of the significant barriers to adopting AT is the complexity and initial unfamiliarity with technology. Trey Hardie pointed out, “A lot of our patients are at the age where computers are still not comfortable for them. Simplifying the technology and providing thorough training is crucial.” “We have been creating a loan closet of AT devices to provide patients with the necessary tools to maintain their independence,” Trey added, emphasizing the practical support available to ALS patients. Groups like the ALS Association, multidisciplinary ALS clinics, and state level AT programs are great places for families to demo different types of AT and in many cases trial them at home. When organizations and families work together, we are more likely to overcome the barriers of access, education, and selection of the right AT tools.
Success Story: Cephable + Other Tech Accommodations
A notable example of how assistive technology has impacted Rex’s professional life is his use of Cephable, a program that has helped him continue working independently despite the progression of his ALS. “Cephable has played a big role in keeping me working because my hands are to a point where using a trackball is difficult. Even scrolling is hard. My daughter Alexa has been a blessing, lowering that learning curve for me,” Rex explained. This adaptation, among others, has allowed him to maintain his work as a Certified General Real Estate Appraiser, extending his career and independence. Rex uses Cephable alongside other software and hardware to accommodate his workflow in the office.
Mentorship and Advocacy
Rex Garrison’s story also emphasizes the importance of mentorship and advocacy. “Having someone ahead of you who can tell you what’s coming makes a huge difference,” Rex explained. His involvement with the ALS Association and his commitment to mentoring others demonstrate how personal experiences can drive broader community support and advocacy for updates in accessibility laws and standards. Rex has a goal to visit Washington DC to speak to lawmakers to continue advocacy around compliance and implementation of the Americans with Disabilities Act (ADA).
Conclusion
Assistive technology has the power to significantly enhance independence and quality of life for individuals with disabilities. However, it’s the combination of this technology with the unwavering support of family, community organizations, and personalized professional guidance that truly makes a difference. By fostering a collaborative environment, sharing resources, and advocating for continuous improvements, we can ensure that everyone can live their lives to the fullest.
Resources and Further Reading
Find an ALS clinic near you with the ALS Association
ETSU Health Gary E Shealy Memorial ALS Clinic
Comprehensive AT search by category or find your state level AT program for device demo/loans
Subscribe to Our Newsletter
Subscribe to our InkSights newsletter for updates, the latest innovations in AT, community announcements, and more!