Helping give a voice to people with ALS | Boston Children’s Augmentative Communication Program

Learn more: http://bostonchildrens.org/als

John Costello, MA, director of Boston Children's Augmentative Communication Program, discusses his work with people with Amyotrophic Lateral Sclerosis (ALS), which is commonly known as Lou Gehrig’s disease.

For the past six years, Costello has been working at night and on weekends with adult patients with ALS. Now thanks to the partnership of a private donor, Boston Children's Hospital is transforming Costello's efforts into a formal program — the Augmentative Communications Service for People with ALS at Boston Children's Hospital.

The program looks at each patient’s needs and skills and matches those to the best tools and technology. Recommendations typically include low-tech solutions, which may be combined with a speech-generating device, computer software, an alternative keyboard or mouse.

Message banking is one of the tools that Costello finds particularly powerful for patients with ALS. With message banking, Costello digitally records and stores patients’ meaningful messages using their own voice, inflection and intonation. He then links those messages to technology so that patients can communicate these important messages in their own voice.

“We can't change someone's medical diagnosis. But we can support people to maintain dignity, control and social connectedness while expressing their true selves and remaining active members of the world around them.” –John Costello