Improving Access to Data on People who are DeafBlind: A Path Forward (2023)

Description

The field of DeafBlindness has long acknowledged the role of conflicting definitions and limited access to data about DeafBlind people as a barrier to service delivery. In 2021 HKNC launched a research project in collaboration with the National Center on Deaf-Blindness and Perkins School for the Blind to compile and analyze literature that illustrates and describes the problem of defining and collecting data about DeafBlind people. We also examined current surveys and registries that collect data about DeafBlind people in the United States. This White Paper outlines the results from our research and identifies actionable next steps for improvement. Our research encompassed a broad spectrum of people who we considered to be DeafBlind, from children to seniors and across populations with varying degrees of combined hearing and vision loss.