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Frieden honored for his lifelong work helping people with disabilities

Lex Frieden, MA, professor of health informatics at UTHealth School of Biomedical Informatics. (Photo courtesy of Lex Frieden)

Lex Frieden, MA, professor of health informatics at UTHealth School of Biomedical Informatics, was named the 2020 Katie Beckett Award recipient for his lifelong work advancing the rights of people with disabilities.

The award was given by ADvancing States, formerly the National Association on State Units on Aging and Disability, an association representing 56 state and territorial agencies on aging and disabilities. The group supports state systems and advocates for national policies that support home and community-based services for older adults and individuals with disabilities.

Frieden has a long legacy in disability advocacy, policymaking, and the community living movement. His work was instrumental in shaping the Americans with Disabilities Act (ADA), which President George H. W. Bush signed into law in 1990. Frieden co-authored the report that included the original legislative report, and he helped write the original draft bill. He also led the federal panel that proposed the 2008 amendments to the ADA.

Frieden first met President Bush in 1986, when Bush was vice president. At the time, Frieden was executive director of the National Council on Disability. Their meeting was set up to discuss a report mandated by Congress which the council had spent two years writing. That report, Toward Independence, laid out a comprehensive plan for legislative and policy initiatives aimed at improving the quality of lives for people with disabilities, as well as assuring them the opportunity to be full participants in their communities. Frieden said at that first meeting, Bush committed to helping with the ADA, and four years later, as president, he signed the bill into law.

“Lex Frieden was a crucial contributor to the development and passage of the Americans with Disabilities Act, and millions of people with disabilities in the United States have benefited because of his leadership,” ADvancing States Executive Director Martha Roherty said in the association’s news release.

Frieden can relate to the award’s namesake. Katie Beckett inspired health care reform through her own personal experience, which led to a Medicaid waiver to allow very sick and disabled children to receive care at home. Beckett was born in 1978, and was hospitalized for most of her early life. In 1981, her parents petitioned for a Medicaid waiver so that they could care for her at home, without being disqualified from Medicaid. President Ronald Reagan established the Katie Beckett Waiver in 1982, and since then, the waiver has helped more than half a million children receive home-based care.

While accepting the award, Frieden, who uses a wheelchair, thanked his own family for their support after his neck was broken in a 1967 car crash.

“Just like Katie Beckett, I would have never had the opportunity to achieve what I have without the support of loyal, loving, and caring family members, and without the benefits of federal programs, including at one point Social Security Disability Insurance and vocational rehabilitation services,” he said.

He said families like Beckett’s helped leaders to better understand the challenges that face people with disabilities, and helped bring the Americans with Disabilities Act to fruition.

“The vision of equal rights and full participation that inspired me and thousands of people with disabilities, our families, our friends, and advocates nearly half a century ago might have never been realized had it not been for the wake-up call that Katie Beckett and her mom Julie gave George Bush,” Frieden said. “Bush’s involvement in Katie Beckett’s case enabled him to convince President Reagan that federal rules affecting people with disabilities needed to be fixed, but equally as important is the drama resonated with Bush due to his and Barbara’s own personal experience with disability in their family, and it preconditioned his commitment to the ADA.”

Frieden is currently leading a national research study to evaluate the impact of the ADA and to identify population group disparities related to employment, transportation, housing, and community living. He is also investigating the effects of COVID-19 on behavior of people with disabilities and older adults.

Published: December 17, 2020

Faith Harper

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