Press Releases

In honor of Deafblind Awareness Week and Helen Keller’s Birthday, U.S. Representative Matt Cartwright (D-PA-08) today introduced bipartisan legislation to help overcome barriers and identify policy gaps for individuals with combined hearing and vision loss. The Deafblind Disabled Americans Table Approximation (DATA) or Deafblind DATA Act, would require the U.S. Census Bureau to publish data on the deafblind population.

Currently, the U.S. Census Bureau only collects and publishes data about individual disabilities, such as hearing difficulty and vision difficulty, but does not publish data about people who experience multiple disabilities. As a result, there is limited data on the number of Americans experiencing the combination of hearing loss and vision loss, also known as deafblindness.

Deafblindness can pose communication challenges, limit information access, and hinder social and emotional well-being. In children, it may significantly impact development and educational attainment. For deafblind adults, it can be difficult to secure employment opportunities or live independently.

“As members of Congress, it is our responsibility to ensure that all of our constituents have access to the resources and opportunities available to them,” Rep. Cartwright said. “Without a comprehensive national picture of the deafblind population, these individuals may not receive the support needed to thrive. My commonsense legislation represents a significant and meaningful step towards identifying policy gaps for deafblind individuals, which will ensure that all members of our communities are being represented.”

National estimates of individuals experiencing deafblindness vary – ranging from 40,000 to 100,000 individuals – because, to date, there is no national mechanism to collect data on the deafblind population.

Specifically, the Deafblind DATA Act would:

·         Require the Census Bureau to publish a summary of those who answered “yes” to experiencing both hearing and vision loss on its American Community Survey, an annual household survey the Census Bureau administers:

·         Require the Census Bureau to submit a report to Congress outlining the feasibility of publishing this table and expanding data collection on the deafblind population as a unique disability category.

This legislation is endorsed by the American Association for the DeafBlind, the Helen Keller National Center (HKNC), the National Coalition on Deafblindness, the National Family Association for DeafBlind (NFADB), the National Intervener and Advocate Association, and the Lackawanna Blind Association.

“The Deafblind DATA Act represents a significant step toward increasing awareness around individuals who are deafblind and ensuring their needs and priorities are addressed at the federal level,” said Dr. Susan Ruzenski, CEO of Hellen Keller Services.  “The Helen Keller National Center commends the work of Congressman Cartwright, and the many supporters of this bill, in their advocacy for the deafblind community. The Helen Keller National Center is committed to empowering deafblind individuals of all ages and backgrounds and believes this bill will help further this cause.”

“As we, the National Family Association for DeafBlind, advocate for individuals who are deafblind of all ages, we are so excited to have a bill that will provide an accurate count of individuals who are deafblind,” said Patti McGowan, NFADB President, and Jacqueline Izaguirre, NFADB Policy, Information and Education Committee Chair. “With an accurate count of the deafblind population, policymakers will be aware of individuals who are deafblind when developing adult services. Deafblindness, the rarest of low-incidence disabilities, brings unique and individualized needs that deserve to be counted!”

In the U.S. House of Representatives, this legislation is co-sponsored by U.S. Reps. Alma Adams (D-NC-12), Jamaal Bowman (D-NY-16), Jasmine Crockett (D-TX-30), Don Davis (D-NC-01), Dan Goldman (D-NY-10), Raúl M. Grijalva (D-AZ-07), Josh Harder (D-CA-09), Jonathan Jackson (D-IL-01), Sheila Jackson Lee (D-TX-18), Henry “Hank” Johnson (D-GA-04), Raja Krishnamoorthi (D-IL-08), Mike Lawler (R-NY-17), Kevin Mullin (D-CA-15), Eleanor Holmes Norton (D-DC-AL), Alexandra Ocasio-Cortez (D-NY-14), Mary Sattler Peltola (D-AK-AL), Mark Takano (D-CA-39), Paul Tonko (D-NY-20), and Brandon Williams (R-NY-22).

Text of this legislation can be found HERE.

A longtime advocate for the deafblind community, Rep. Cartwright reintroduced the Alice Cogswell and Anne Sullivan Macy Act in September 2023 to strengthen the Individuals with Disabilities Education Act (IDEA) and ensure that visual and hearing-impaired students receive the best education possible.