About Us

The Coalition provides information to policy makers, fiscal agents, education professionals, and community leaders, and advocates on behalf of the DeafBlind community, in partnership with adults who are DeafBlind, families, and stakeholders.

Our partners include:

History

The National DeafBlind Coalition was founded in the 1980s to protect designated federal IDEA funding that had been appropriated to support children and youth who are DeafBlind, their families, and educational teams. The early work of the Coalition was spearheaded by Michael Collins from Perkins School for the Blind and Joe McNulty from Helen Keller National Center. Since that time, the Coalition has grown into a 501(c)3 non-profit to serve as an umbrella organization for advocacy across the life span of individuals who are DeafBlind.

Currently, there are initiatives at the federal level that threaten the funding of the national DeafBlind network. The efforts of the Coalition are needed now more than ever.

Logo with AADB on top and American Association The DeafBlind with navy blue background
Logo says The CHARGE Syndrome Foundation with navy letters and white background
Logo showing DBCA and DeafBlind Citizens in Action in white letters with black background
Picture of HKNC Sign that reads HKNC Helen Keller national Center for DeafBlind Youths and Adults with trees in background
Logo says NFADB with black letters next to black ILY hand inside a square with yellow background with yellow circle and black letters saying Empowering Success for Families of the DeafBlind Community
Logo says USH in yellow letters on navy background for Usher Syndrome Coalition

Building a Better Tomorrow

The Cogswell-Macy Act (H.R.9195 and S.4676 in the House and Senate respectively) would strengthen the Individuals with Disabilities Education Act (IDEA) and expand access for children/students who are Deaf, blind/low vision, and DeafBlind to the educational supports and services they need to succeed and thrive. This comprehensive legislation includes three distinct titles, including Title III that specifically addresses the needs of children and young adults who are DeafBlind.

The Helen Keller Education Act is just Title III of the Cogswell-Macy Act as a stand-alone bill. This more streamlined legislation may have a better chance of advancing in the House and Senate because of its strategic focus on just one disability category. Our hope is that representatives and senators who have supported Cogswell-Macy in the past will naturally support the new Helen Keller Education Act. The Coalition will also continue to advocate for the larger Cogswell-Macy Act.

The Congressional DeafBlind Caucus was launched in 2025 and represents a significant advancement in our work highlighting the unique, specialized educational needs of children/students who are DeafBlind. Congressional caucuses serve as central hubs for information, advocacy, and leadership among members of the House and Senate. The DeafBlind Caucus is co-chaired by Representatives April McClain Delaney (MD-06) and Morgan McGarvey (KY-03).

The DeafBlind DATA Act would require the U.S. Census Bureau to collect and publish data on individuals with combined vision and hearing loss. Along with reinforcing the existing national Deafblind Child Count, this bill will gather basic information about the incidence of DeafBlindness among adults. It is very difficult to advocate for the full range of needed adult services without basic information about how many DeafBlind adults there are in the U.S. This bill will address this critical data gap. 

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