Advocates of independent living for people with disabilities have a lesson for many aspects of HHS’s work: All Americans, including those who are older or have a disability, are best off when they can live in their home and their community.
As Prepared for Delivery
Thank you, Lance [Robertson], for that introduction, and thank you to everyone who’s joined us in the Great Hall or over the livestream today.
It’s great to be here to help celebrate this milestone for NIDILRR [National Institute on Disability, Independent Living, and Rehabilitation Research]: 40 years of remarkable research and translational work.
It is a special honor to be able to do so with some former NIDILRR directors, a number of people who were there at the very beginning, many people who are carrying the vision forward today, and a few who have been part of the organization for most of its life.
As Lance mentioned, NIDILRR, or, originally, the National Institute on Handicapped Research, was created in 1978, with amendments to the Rehabilitation Act of 1973. But NIDILRR’s foundation dates to the 1950s and the vision of inclusion for people with disabilities that was championed by Mary E. Switzer, then the federal director of vocational rehabilitation in the Department of Health, Education, and Welfare.
She became the first administrator of HEW’s Social and Rehabilitation Service in 1967 and ultimately retired in 1970 as the highest ranking woman in the federal government.
A strong supporter of research, Mary Switzer understood that rehabilitation must be seen as a continuum, stretching from acute hospital interventions through post-acute and outpatient services, and ultimately into the community.
The federally funded research begun during her tenure grew over the years.
In the 1960s, work at HEW led to the development of both rehabilitation-engineering and regional spinal cord injury centers, which became the rehabilitation-engineering research centers and spinal cord injury model systems that are funded by NIDILRR today.
In honor of her commitment to building research capacity in the field, NIDILRR created the Mary E. Switzer Fellowship program.
These fellowships provide funding along two tracks: one for investigators in the early stages of their careers and another for well-established researchers. I know you’ll be hearing a bit more about this program later this afternoon.
Mary Switzer was a pioneer, who helped shift the way our country approaches disability policy. Today, we recognize that community living should be the expectation for all people, and we are working to make that vision a reality.
It’s fitting that NIDILRR, which continues today the work begun by Mary Switzer more than 70 years ago, is today housed in the HHS building named for her.
It’s also fitting that NIDILRR is housed at HHS, period, because its research is relevant to a whole range of HHS programs.
NIDILRR is not the only federal entity involved in disability research, but its mission is unique. While other federal research entities support rehabilitation research on issues like prevention and cures, NIDILRR especially invests in research that is tied to longer-term outcomes, such as independence, community participation, and employment.
A key function for NIDILRR is knowledge translation—disseminating research to industry, healthcare professionals, other researchers, and anyone else who can make good use of it.
This makes NIDILRR directly relevant to much of the work we do at HHS. One of the four priorities I have identified as Secretary is to move from a healthcare system that pays for sickness and procedures to one that pays for health and outcomes.
That work will require improving coordination between the health and human services sides of HHS, including the Administration for Community Living, because it means supporting older Americans and those with disabilities in maintaining their independence.
The idea of a continuum of support and care that Mary Switzer understood is becoming a more and more important piece of our health system every year.
Advocates of independent living for people with disabilities have a lesson for many aspects of HHS’s work: All Americans, including those who are older or have a disability, are best off when they can live in their home and their community.
I also want to note two especially important aspects of NIDILRR’s research today: intensive interagency coordination and longstanding cooperation between the public and private sectors.
All of us encounter the results of this work every day.
NIDILRR’s current director, Dr. Bob Jaeger, chairs the Interagency Committee on Disability Research on my behalf. The committee is charged by statute with promoting coordination and cooperation among federal departments and agencies conducting disability, independent living, and rehabilitation research.
As one example, NIDILRR has worked with the U.S. Access Board, an independent federal agency, on standards for accessibility in the built environment. Together, they ensure that things like ramps and automatic doors work for everyone, with and without disabilities.
Meanwhile, through cooperation with the private sector, NIDILRR also played a key role in computer accessibility, from the beginnings of personal computing up through today.
NIDILRR researchers worked with Microsoft in the very early days of Windows to add accessibility features to the operating system. In the beginning, that meant tools like screen readers for people with visual impairments; today, that means things like devices that allow people to control their computers with movements of their eyes.
And if you’ve ever watched television and relied on the on-screen captioning to understand what’s being said, you’ve seen NIDILRR’s work. NIDILRR and the Access Board worked together to ensure that every television sold in the United States has that capability.
So the work NIDILRR is doing is makes a difference in the day-to-day lives of people with disabilities—and all Americans.
We have seen remarkable progress for Americans with disabilities over the last four decades. I am looking forward to seeing what the future holds, and I have no doubt that NIDILRR will continue to expand our horizons and open new doors.
In the rest of today’s program, you’re going to hear from those who helped lead NIDILRR over the years, as well as several people who are continuing that work today.
Speaking of those who have played a key role in leading NIDILRR, I have the distinct pleasure of now getting to recognize one of the former directors of NIDILRR, a friend of mine, the Honorable Margaret J. Giannini.
Dr. Giannini’s work for people with disabilities stretches back more than six decades. Throughout her career, she established a number of innovative programs for the prevention, early detection, and treatment of intellectual disabilities.
These include the first preschool in New York City for children with intellectual disabilities; special programs in speech, audiological evaluation and therapy for children with multiple disabilities; and group counseling for bilingual parents of children with intellectual disabilities. In 1979, President Jimmy Carter appointed her to serve as the first director of the National Institute on Handicapped Research, the institution that became NIDILRR.
In 1981, under President Ronald Reagan, she moved on to the Department of Veteran Affairs, where she was the deputy assistant chief medical director for rehabilitation and prosthetics.
Under President George W. Bush, she served here at HHS as the principal deputy assistant secretary for aging, and later as the director of the HHS Office on Disability.
I have had the honor of working with Dr. Giannini over the years, and she is currently an adviser to me on disability-related activities.
Today, I want to offer a special recognition of the historic role Dr. Giannini has played in NIDILIRR’s work, and federal disability policy generally. So, as we celebrate the 40th anniversary of NIDILRR, it is a distinct pleasure to present Dr. Peg Giannini with the first-ever award for Lifetime Achievement in Advancing Community Living, in recognition of her decades of service to researching and advancing that cause.
Dr. Giannini, thank you for your lifetime of distinguished, accomplished service.
