People living with ALS eventually lose the ability to speak. That means that preserving channels of communication is an important component of enhancing quality of life. The ALS Association – DC/MD/VA Chapter took this to heart when they initiated The Esther Lerner Brenner ALS Assistive Technology Lab in Maryland, which is designed to help people living with ALS communicate effectively for as long as possible.
“Our goal is to make sure you have the ability to communicate with not only your family and friends, but also with your doctors and therapists who are just getting to know you,” said Regan Flores, assistive technology specialist at The ALS Association – DC/MD/VA Chapter.
“It’s really great to see all of the new doors that assistive technology is opening for people with ALS and we’re excited to be a part of it,” said Judy Taylor, executive director of The ALS Association – DC/MD/VA Chapter.
The chapter offers assistive technology communication support and device options of all levels – from boogie boards, which are low-tech, erasable tablets for writing that cost about $10 each, to voice recording technology that can capture a person’s voice before they lose it, to a thoughtfully put together “patient kit” designed for people with bulbar onset in mind. The kit contains an Android tablet with a hands-free head mouse and stylus, a candy corn proximity sensor switch, and a table mount for easy access and comfort.
The chapter also provides environmental control support, such as assistance in creating a “smart home” environment, giving people with ALS the ability to easily control household objects like light switches and televisions by using devices like Amazon’s Alexa.
The chapter provides in-person and virtual classes every week and lessons by appointment in the specialized assistive technology lab. Here, people test out and learn how to use each technology, which helps them decide what works best for them now and what they may need in the future. Everyone leaves with the equipment they need and the security of knowing how to use it.
Another unique aspect of the program is a traveling assistive technology van. It goes to home visits and clinic days with the chapter’s assistive technology specialists, visiting areas with limited access to assistive technology support. It is fully equipped with a variety of devices, ready to immediately go to people who need them. This “speedy delivery” is so important to get people what they need right away, along with one-on-one user support.
We are excited to provide this unique assistive technology service to people living with ALS across the DC/MD/VA chapter that was made possible by a generous gift from the Lerner family. The chapter also has an assistive technology lab in Richmond, Va., that is offering similar support to families in that area.
We believe both labs play a significant part in improving the quality of life for the people we serve. Assistive technology is a gateway to enhancing a person’s communication with their loved ones and beyond.