Unmet potential: How ALS patients and caregivers are missing out on accessibility features in everyday technology

A recent study by Associate Professor Takehisa Hirayama and Professor Osamu Kano from the Department of Neurology at Toho University School of Medicine has revealed a critical gap in the use of accessibility features among people living with Amyotrophic Lateral Sclerosis (ALS) and their caregivers. Though over 90% of ALS patients surveyed reported daily use of smartphones, tablets, or computers, many are unaware of the accessibility tools embedded in these devices—tools that could greatly enhance their quality of life as the disease progresses.

ALS gradually impairs motor function, making routine communication and interaction with digital devices increasingly difficult. Most modern devices offer features such as voice control, screen readers, or adaptive touch settings—collectively known as accessibility functions—to support users with physical limitations. However, the study found that awareness and utilization of these features remain remarkably low, particularly among older adults. Many had never activated accessibility settings, and some were unaware they even existed.

The study also highlighted that patients in the early stages of ALS—those with only mild impairments—often navigate technology challenges on their own. Because they appear capable, formal support is rarely offered, leading to missed opportunities for early adaptation. Moreover, while many participants expressed optimism about the role of ICT in maintaining autonomy, some shared that relying on these tools was emotionally difficult. For some, using voice commands or assistive typing settings was a painful reminder of their progressing illness, which sometimes discouraged adoption.

Perhaps most concerning was the finding that public support services—such as ICT training centers for people with disabilities—were virtually unknown to most respondents. Despite the availability of these resources in Japan, awareness was strikingly low, underscoring the need for better outreach and education.

Published in the Journal of Clinical Neuroscience on July 3, 2025, the study calls attention to a vital yet overlooked issue. While technology has the potential to empower individuals with ALS, that promise remains unfulfilled without greater awareness and support. As our world becomes increasingly digital, ensuring that vulnerable populations can access and benefit from these tools is not just a matter of innovation—it is a matter of equity and human dignity.

Hirayama T, Nagasawa J, Shibukawa M, Morioka H, Yokoyama T, Tsuda H, Bokuda K, Ogino M, Takao H, Morita M, Takahashi Y, Nakamura R, Atsuta N, Urushitani M, Yamanaka K, Izumi Y, Kano O. Survey research on the awareness and usage of accessibility features of information and communication technology devices among patients with amyotrophic lateral sclerosis. J Clin Neurosci. 2025 Jul 3;139:111434. doi: 10.1016/j.jocn.2025.111434. Epub ahead of print. PMID: 40614636.