ACL’s Nat’l Institute on Disability, Independent Living & Rehab Research – 40th Anniversary, Part 1
Articles,  Blog

ACL’s Nat’l Institute on Disability, Independent Living & Rehab Research – 40th Anniversary, Part 1


Lance Robinson:
Good afternoon everyone, good afternoon and thank you for your patience we’re now ready
to begin. My name is Lance Robinson, I’m the administrator
for the Administration for Community Living and the Assistant Secretary for Aging here
at the Department, and we’re so, so happy that you are here today to help us celebrate
the 40th anniversary of the National Institute on Disability, Independent Living, and Rehabilitation
Research. I’m joined on stage by ACL’s principal deputy
administrator Mary Lezare, who will be helping me emcee our program today. And also with us for the first part of the
program are five of the former NIDILRR or NIDRR, or NIHR, depending on what we’re talking
about, directors. So together they’re going to be providing
a historical retrospective of how NIDILRR began, what NIDILRR has accomplished, and
how the foundation was laid for our future. Let me get started with a quick summary of
NIDILRR’s history. As many of you know, NIDILRR was created as
the National Institute on Handicapped Research in 1978. With the passage of the Rehabilitation Comprehensive
Services and Developmental Disabilities Amendments to the Rehabilitation Act of 1973. It was charged with the responsibility of
providing the required knowledge for defining the needs of people with disabilities and
with identifying the needs of people disabilities and with identifying the means for improving
services. Its original goal was to focus, in one agency,
a strong commitment to a major program of research, in all aspects of disability and
the related socioeconomic implications of the problems encountered by individuals with
disabilities. The scope of activities prescribed to NIHR
was all encompassing and cut across practically every facet of rehabilitation and habilitation
service and research activities with no limitations in terms of type of disability, age, or intended
goals. In 1986, NIHR became the National Institute
on Disability and Rehabilitation Research. The terminology needed an update to reflect
the current times, but the mission was as important in 1986 as it had been in 1978 and
it remained largely unchanged. Then, in 2014 the Workforce Innovation and
Opportunities Act Gave the organization both a new name and a new home. In recognition of a key philosophy that had
long been a NIDRR priority, independent living was incorporated into the name, turning NIDRR
into NIDILRR. Most exciting for us at the Administration
for Community Living, NIDILRR was transferred to us within the Department of Health and
Human Services. Ultimately, active community living and meaningful
social participation for individuals with disabilities is the desired goal and outcome
of the research and development initiatives that NIDILRR sponsors. Which means ACL is exactly the right place
for NIDILRR to be. And a bit later you’re going to hear about
some of NIDILRR’s current work and the road ahead. But first I have the distinct privilege of
introducing our first honored guest. If you would, please help me in welcoming
to the stage, the 24th U.S. Secretary for Health and Human Services, Mr. Alex Azar. Alex Azar:
Thank you Lance for that introduction, and thank you to everyone who is joining us here
today in the great hall or over the live stream today. It’s great to be here to help celebrate this
milestone for NIDILRR. 40 years of remarkable research and translational
work. It’s 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. The year somebody was born. And ultimately retired in 1970 as the highest-ranking
woman in the entire 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 1960’s 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 Switzer’s 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’re 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, health care professionals and other researchers and
anyone else who can make good use of it. This makes NIDILRR directly relevant to much
of the work we do here at HHS. One of the four priorities that I’ve identified
as secretary is to move from a health care 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’ 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 inter-agency coordination and longstanding
cooperation between the public and private sectors. All of us encounter this work every day. NIDILRR’s current director, Doctor Bob Yeager,
chairs the interagency committee on disability research on my behalf. The committee is charged by statue 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 to today. NIDILRR’s 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 or relied
on the on screen captioning to understand what’s being said, you’ve seen NIDILRR’s work. I especially appreciate that work as I read
any Briti- watch any British comedy because I always have to put the closed captioning
on so I can understand what they’re saying in English. NIDILRR and the Access Board work together
to ensure that every television sold in the United States has that capability. So the work NIDILRR is doing makes a difference
in the day to day lives of people with disabilities and of all Americans. We’ve seen remarkable progress for Americans
with disabilities over the last four decades. I’m looking forward to seeing what the future
holds and I’ve got 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 close friend of mine, the Honorable Margaret J. Giannini. [applause] Doctor G’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 later became NIDILRR. In 1981, under President Ronald Reagan she
moved on to the Department of Veterans Affairs where she was the Deputy Assistant Chief Medical
Director for Rehabilitation and Prosthetics. Under President George W. Bush, she served
here at HHS with me and many others as the Principle Deputy Assistant Secretary for Aging
and later as the Director of the HHS office on disability. Ive had the honor of working with Doctor G
over the years and she is currently an advisor to me on disability related activities. Today I want to offer a special recognition
of the historic role that Doctor Giannini has played in NIDILRRs work and Federal Disability
Policy generally. So, as we celebrate the 40th anniversary of
NIDILRR it is a distinct pleasure to present Doctor Peg Giannini with the first ever Award
for Lifetime Achievement in Advancing Community Living in recognition for her decades of service
to researching and advancing that cause. [applause] Please join me in thanking Doctor G for her
lifetime of distinguished and accomplished service. [applause and cheers] Lance Robinson:
Alright, such an honor, of course, to have the Secretary of the Department of Health
and Human Services join us this afternoon. And again, I think that’s a testament to his
support and his ongoing passion for the great work that’s happening. And certainly, congratulations Doctor Giannini. What we want to do here is talk a little bit
about — oh, we’re going to do a tech demonstration first, okay, we’re catching up, hold on. What we want to do now actually is invite
to the stage a couple of individuals that are going to help us demonstrate a chair,
so let me kind of introduce that. Secretary Azar talked about some of the ways
that NIDILRR’s work has made a difference in the lives of people with disabilities and
improved the world that we all live in. As technology as evolved, NIDILRR has been
right there ensuring that the needs of people with disabilities are being considered. For example, NIDILRR researchers are working
to improve accessibility features in digital television to deliver high quality captioning
and description services to a company, the sharper picture, expanded
audio, and extensive data services. NIDILRR’s also working to build the longitudinal
knowledge base for example; NIDILRR funds the spinal cord injury model systems which
focus on improving care for people with spinal cord injuries. Since before NIDILRR was officially formed,
the SCI model systems have been building the largest longitudinal SCI database in the world. By studying conditions over time, researchers
can often spot causes to problems which can lead to effective treatments. And spinal cord injury, this has led to changes
and practices that have reduced the incidence of pressure sores and urinary tract infections. Not long ago, UTIs were a leading cause of
death for people with SCI. The new protocols developed as a result of
the longitudinal data and have greatly increased the life-expectancy of people with SCI. NIDRA [spelled phonetically] also manages
similar systems for TBI and burns, in fact. NIDILRR’s TBI model systems program was, itself,
the model for the federal interagency TBI research database which now includes data
from HHS, the Department of Defense, and the Department of Veterans’ Affairs. NIDILRR’s research has led to advances in
augmentative and alternate communications, alternative communications. Not all that long ago, the only tool available
to people who were unable to speak was a manual communications board. NIDILRR research contributed to the development
of devices that can receive input from the user and turn that into an audible voice. NIDILRR researchers have improved the functions
of powered upper limb prosthesis by developing reliable, robust, and clinically viable prosthetics
that are controlled by electrical signals from muscles. And NIDILRR also continues to drive improvements
in wheelchairs. For example, Dr. Todd Keichen [spelled phonetically]
and his team at the Shirley Ryan Ability Lab Center for Bionic Medicine [spelled phonetically]
have developed a revolutionary wheelchair that allows users to move while in a standing
or a seated position. The first of its kind, this dual-mode wheelchair
could significantly improve mobility and quality of life for the more than 1 million manual
wheelchair users in the U.S. alone. Dr. Keichen and his colleague, Frank Ursetta
[spelled phonetically], are here to demonstrate. And I would like to welcome them to the stage
at this time. Right here, a round of applause. [applause] So, while they’re getting in place, I have
to do a bit of disclaiming here. This wheelchair is still in the research stage
and we’re showing it to you as one example. And there are many, many more of the way that
NIDILRR research expands options for people with disabilities. While we always hope to see research results
turn into commercial availability, there’s never, of course, such a guarantee. So, with that, Dr. Keichen, please take it
away. Male Speaker:
Good afternoon and thank you NIDILRR very much for inviting us here today. It’s an honor to be one of thousands of different
projects that NIDILRR has funded over the years. And my colleague Frank Ursetta is the lead
engineer on our interesting new design for a wheelchair that can used both in sitting
and standing. So, while he shows you how it works, I’m going
to explain some of the benefits of standing that are true for everybody, but it’s magnified
for people with disabilities who are forced to sit most of the time. So, probably the biggest thing is the psycho-social
part. Every user that’s gotten in our wheelchair
has just been excited about the idea of being able to go to a party or a restaurant and
be at eye level with their family and friends. They get very tired of being at “butt level,”
that’s a quote. [laughter] So, not only is Frank his full height, he
gets an extra three inches if he’s in this chair. [laughter] So, that’s probably one of the biggest things
is to put people on an even keel with communication. The second — a second big advantage is, of
course, functional. It’s really hard to reach anything above your
head when you’re sitting in a wheelchair. When you can stand, your workspace gets very
much bigger. And one of the users in the chair said, “I
could finally see the back of the top of my fridge, although that might be really, really
scary since I haven’t seen it in years.” [laughter] On top of the functional and psychological
benefits, there are many health benefits that apply to everybody in this room. You’ve probably heard that sitting is the
new smoking and there’s a push to have people stand more. That’s because standing is better for many
systems. From the top down, it’s better for your heart
in that you have to pump a little better to get circulation over a higher distance. It’s better for your pulmonary function, you
breathe easier when you’re standing than when you’re sitting. It’s better for your G.I. tract and your urinary
tract. So, your valve function and elimination is
better. It’s better for your bones, and helps reduce
osteoporosis. For spinal cord patients it’s helpful to take
the weight off of their bottom so that — to, hopefully, reduce the incidence of pressure
sores which is very large and very costly in the United States. So, standing is healthy for us all and we
want to give at least some of that back to people with disabilities. So, thank you very much. [applause] Male Speaker:
All right, thank you. Thank you Dr. Keichen and Frank, we appreciate
that demonstration. As you can see the work that NIDILRR is doing
is really making a difference. That has been true since day one. And I know, NIDILRR will continue to challenge
current limitations and create the knowledge needed to remove barriers to community living. So, let’s shift gears now for a minute. And talk a bit more about how we got to where
we are today. And, again, we can’t think of anyone better
to share that information with us than those who have helped lead NIDILRR over the last
four decades. So, the very first director as has been introduced
is Dr. Peg Giannini and she is going to start us off. Dr. Giannini led NIER [spelled phonetically]
from 1979 to 1981. Secretary Azar [spelled phonetically] again
told you quite a bit about her. So, I’m going to turn the floor right over
to Dr. Giannini and, hopefully, your microphone is hot, Dr. G. Margaret Giannini:
I hope so. Can you hear me? Multiple Speakers:
Yes. Margaret Giannini:
Okay, great. Ready [laughs]? Thank you, first I want to thank the secretary
for such a very gracious introduction. And we’re really so lucky to have him as our
secretary. I think you will agree. And I’m so happy to be home again and see
so many friends and familiar faces. Thank all of you for being here today. I’m going to talk to you today about the early
history of the National Institute of Handicapped Research which is now known as NIDILRR. And as the first director, how I executed
my — some of my responsibilities and set the priorities. Long before the creation of the National Institute,
there was a great deal of energy, as you heard a little bit from the secretary’s talk, and
effort by various agencies voluntary, governmental, and involuntary. And of persons and for persons for disabilities
and the Congress, and, most importantly, President Carter’s interest and his administration to
create this institute. The National Institute of Handicapped Research,
as you’ve heard, was established in 1978 by the amendments to the Rehabilitation Act of
1973, which include the services the secretary alluded to, rehabilitation, comprehensive
services, and developmental disabilities amendments. The creation of this institute was very, very,
I can’t emphasize it enough, important because of its legislative mandates. The director was to be a Presidential appointee
and to be confirmed by the Senate. This requisite was a very significant factor
in being able to advance policies with other federal agencies for the disabled population. The institute was, and still is, in charge
of new research seeking knowledge for defining the needs and identifying means for improving
services for persons with disabilities. Another important factor which was touched
upon was established by the amendments is the Inter-Agency Committee on Disabilities
Research, ICDR, which is chaired by the director of NIDILRR. The underlying of this mission of this committee
was to work with all federal agencies in the development of a long range plan and partner
in funding. The agencies included such as Labor, NASA,
Social Security, Transportation, Department of Housing and Urban development, National
Bureau of Special Education and all other significant federal agencies. In addition, the amendment also created the
National Council on Disabilities, which consisted of presidential appointees. And their role was to counsel and advise. During the Reagan administration, it became
a freestanding entity, reporting directly to the President. I guess they didnt like reporting to me. The unique research of activities for NIDILRR
include, as you may well have guessed, all aspects of rehabilitation and habilitation,
with no limitations as you heard of the types of disabilities or age. It was intended that the new institute would
retain most of the research projects undertaken by Rehabilitation Services RSA, such as the
engineering centers and the training centers. At various psychosocial vocational, and medical
projects. On the international front, under Public Law
480, which contained foreign currency earned by the United States remained in those countries. Research projects were designated by NAIDLER
and supported for many years in countries as Israel, Poland, Morocco, Tunisia, Egypt,
old Yugoslavia, India, Pakistan, and so many others. The longest project was in India for several
years later, which Dr. Robert Yeager, the present director, directed. The currencies in P.L. 480 are no longer available
today for NIDILRR, which is very unfortunate, because this collaboration germinated some
very good research, which the United States worked on and expanded, such as functional
electrical stimulation. It really just started before we got heavily
involved during my tenure, in Lubiana [spelled phonetically], Yugoslavia. And also the post-operative fittings of prostheses
after amputations. As director, my responsibilities were to improve
the research for all disabled individuals, from birth to death. With an emphasis on early identification,
diagnosis, evaluation, and treatment. My responsibility was also to develop a national
long range research plan, which addresses the overall needs and services for disabled
individuals. Now mind you, this is an ambitious, complex
endeavor. Because the nature of all disabilities is
diverse. And disabled individuals are diverse in themselves,
therefore my approach was to view disabled individuals as a whole person for the 24 hour
day, in order to meet the needs of day to day tests, to achieve a good quality of life. I also recognized, excuse me — I also recognized
that results of research initiatives must be integrated to provide a smooth lifespan
transition, not just for today or a week or a month, but for years to come. What does all of that translate to? Well lets ask the question. How does a disabled person start their day? How does one get up, get dressed, tend to
their toiletries, get to school or work? And once theyre there, do they have all the
support services and technology to function? How do they get home? How do they have dinner? How do they get ready for bed? If there are social activities, how are these
activities accomplished? With this framework, I felt it was a good
start. Initially there was many goals to achieve
and I just will try to cite a few. One was to create a model demonstration center
to produce and provide captioned video cassettes with cultural, educational, scientific, and
vocational content available to deaf persons. Many years later, a cochlear implant was created,
which allowed a child born deaf, for the first time, to hear his or her mother say, “I love
you.” The institute was charged to create model
research and training centers on new techniques, and evaluating training, and placing disabled
individuals in productive work. Another goal was to create research programs
to how best train and retain rehabilitation professionals to work in rural areas. Another goal was to develop and implement
a public education program to help inform the public on problems of disabled individuals,
such as self-care, family care, and preventive aspects of rehabilitation. Another goal was to distribute new technological
systems and devices to persons with disabilities that could improve their quality of life,
such as functional electrical simulation for people with spinal cord injuries to walk,
and the creation of the energy-storing foot, the Seattle Foot, later known, which allows
amputees, for the first time, to play sports, and to be physically active. In the legislative language creating the institute,
a major goal was to have strong dissemination of information to the general public, clinicians,
researchers, and disabled persons. The National Rehabilitation Information Center,
NARIC, was engaged to maintain databases and professional cooperation projects at that
time. A responsibility of the National Institute,
however, was a publication called, The Bulletin, that annually published abstracts and scientific
summaries, which became the Journal of Rehabilitation Research and Development, and under my tenure. In addition, instructional manuals were also
created, such as, “How to Prescribe a Wheelchair,” and other instructional monograms. These publications were later replaced, and
is presently, “News and Notes.” I want to make a comment, very strongly, that
the creation of this Institute is extraordinary because the research initiatives cover all
aspects and needs for persons with disabilities, such as health, education, transportation,
housing, labor, and all other needs. Even though we have come a long way, and we
have done many good things, productive things, but we must not become complacent. We have much more to do. My message to you today is that we must remember,
and understand, that persons with disabilities have the same desires and goals as we all
have. They want to live, learn, earn, laugh, and
love. It’s well to remember that, many years from
now, it won’t matter how large your wallet was, or what car you drove, but how you improved
the life of a person with disabilities. Under the fine leadership of director Robert
Yeager, the original mission, which is important, the original mission and goals of this institute
will flourish and grow to provide the best outcomes for persons with disabilities to
be accepted as first-class citizens, and to be contributing members of society, with dignity,
fulfillment, and pride. Dr. Yeager’s outstanding leadership, and with
a passion, and commitment, and motivation of all of you, we must maintain a fierce determination
to succeed in advancing research to improve the lives of persons with disabilities. And we will succeed. We must dream big dreams. The future awaits you. The future is you. The time is now. So, with that, together, let’s roll. [applause] Thank you.>>Female Speaker: Thank you, Dr. Giannini. You know, I noticed, I look like I’m wearing
a tablecloth today, so I just — [laughter] — want to let you know, this really is a
dress. It’s not one of the tablecloths. [laughter] But to continue with a little history, in
regards to NIDILRR, Dr. Giannini was succeeded by Dr. Douglas Fenderson, who as appointed
by President Reagan, and confirmed by the U.S. Senate, to serve as the Director of NIHER
in 1983. Dr. Fenderson, unfortunately, is not able
to be with us today. But he asked that we share a few recollections
that he said we could share with you. So, interestingly enough, at the time, NIHER
was housed in the same building we’re in today. NIDILRR has truly become full circle and come
home. He came to D.C. from Minnesota, as a vocational
rehabilitation counselor in Minnesota, he helped farmers reorganize their farms to accommodate
post-polio limitations. He also worked with people who developed disabilities
due to rheumatic fever, and mining and railroad accidents. Following that work, the medical direction
at Elizabeth Kenny Institute asked him to develop a work evaluation program to help
people with disabilities return to employment. He spent a few years there before becoming
a professor at the University of Minnesota, which is where President Reagan found him. One interesting thing that was part of the
— his tenure at NIHER, was the focus, at the time, was on helping states develop legislation
to provide necessary resources to make the programs at NIHER operate well. So, Dr. Fenderson also said that living and
working in Washington, D.C. was an unforgettable experience, that he, his wife, and his family
have — and they have many fond memories of being here, as well. So, he sends his regards to all of you, and
to all of the previous directors, as well. Advancing on, the late Dr. David Gray, who
passed away in 2015 at the age of 71, followed Dr. Fenderson at the helm of NIDILRR. Dr. Gray was a Professor of Occupational Therapy,
as well as a Professor of Neurology, at Washington University School of Medicine in St. Louis. I’m told that he became motivated to change
what it means to be disabled after he was paralyzed in a 1976 — in a fall from a roof
that broke his neck. He went on to work for several agencies at
the National Institute of Health and was an important advocate for the Americans With
Disabilities Act of 1990. In fact, he was present when George H.W. Bush
signed that bill into law. Gray was also well-known for thinking outside
the box. He was the visionary behind the internationally-recognized
Enabling Mobility Center, which is now called, “The Health and Wellness Center,” which is
also located in St. Louis, at Paraquad, which is a center for independent living. The center serves as a resource to promote
overall physical health and emotional well-being for people with disabilities. There, people with mobility limitations work
out with trained professionals in a fully-accessibly gym. And they are evaluated on a mobility skills’
course and test new assistive technology. They also learn about personal health and
wellness and are able to acquire pre-owned medical equipment at a low cost. I, actually, as a note, visited this gym. And it is absolutely phenomenon and packed
to the gills. I mean, it’s a very highly-used wellness center. Dr. Gray was passionate about developing personalized
interventions to help individuals fully participate in everyday life activities. He developed outcome measures, with participation
at the core. And he tested interventions to improve community
participation for people with disabilities. His work on measures of community participation,
and the role that environment can play in determining whether a person with disabilities
can fully participate in an activity, is internationally recognized. In short, Dr. Gray’s life work was advancing
the fundamental principles to which NIDILRR and all of ACL remain committed to today. And so, with that note, I’d like to turn it
over to Lance to continue with the history.>>Male Speaker: Thank you, Mary. So, the next director is actually here with
us today. Dr. William Graves was appointed to lead NIDRR
by President George H.W. Bush. Dr. Graves formerly served as a Dean and Professor
of Educational Leadership and Counseling at the Darden College of Education at Old Dominion
University in Norfolk, Virginia, as well as Dean and Professor of Counseling at Mississippi
State University. He also served as a director of the Rehabilitation
Research and Training Center on Blindness and Low Vision at Mississippi State University. He is the author of research articles, technical
publications, and books on rehabilitation counseling and disability policy and research. And his research in blindness and low vision
was funded by state and federal agencies for over 10 years. For his research contributions, he received
the Distinguished Service Awards from the American Rehabilitation Counseling Association
and the National Association of Rehabilitation Research and Training Centers. He also received the Warren C. Bledsoe Award
for outstanding contributions in research in the field of blindness and low vision. Dr. Graves has held national leadership offices
in numerous professional associations and certification bodies. He has been appointed to disability policy
and state educational licensing bodies by the governors of Mississippi and Virginia. And he currently serves on the National Advisory
Board on Healthcare Services for Anthem. Dr. Graves, the floor is yours, sir.>>William Graves: Thank you. Can you all hear me? Is it loud enough for you? Thank you. I am honored to be invited to be here and
to sit on this stage with such luminaries in the field of disability. Thank you all for allowing me to do this. I’m going to do this quickly because I want
to hear what these other guys have to say. Just 28 years ago, I was appointed Director
of NIDRR. That was in 1990. You can tell things have changed for me in
that time. I was nominated by President Bush, confirmed
by the Senate, and probably the last director to be confirmed by the Senate. Now, I don’t know of that’s a comment on my
performance or not, but we will — [laughter] — just let that go. There are several scholars, and people in
this hall today, that were involved in my appointment process. And I’m grateful to them. And they gave me one of the finest honors
I’ve had in my career as a researcher in the field of blindness and low vision, and in
rehabilitation counseling. Dr. Giannini gave just an excellent overview
of what NIDRR was like in the early days. But I’m — will shift just a second here and
do something a little differently. The frame that Dr. Giannini established continues
to exist. It was certainly there when I came in. But the winds were changing. And changing in important ways. People having disabilities, and their families,
were becoming — frankly, they were very disappointed that they were being regarded as subjects
of research, not partners in the research process. People with disabilities, and their advocates
in Congress, and other agencies in the Bush White House, wanted changed. And change came. It came, most prominently, in that July in
1990. And, like David Gray, I was there, too, when
President — I can’t imagine how many of you were there. I know a lot of you were there when President
Bush signed a — signed the ADA. And he was there with the late Justin Dart,
Evan Kemp. And you all can go down the list of all of
the people who were there. Well, with the new ADA — with the new ADA,
I was asked to say things — things had to change. We had to have a research model, and a training
model, and an information dissemination model, that had people with disabilities as true
partners in the process. Partners in the process in terms of determining
the questions being asked, the way the research was being done, how the research was being
interpreted, and how it’s being shared around the world. I know you all know that during that era,
the 1990’s — the 1990’s, there was a rallying cry. The rallying cry you heard very frequently
is, “Nothing about us, without us.” That’s what we tried to do in NIDRR is to
get that process established. Was it perfect? No. Was it a raw process? Yes, it was. Was there resistance? Yes, there was. But I can tell you, because of the involvement
of people with disabilities in the process, we are enjoying a better life as Americans,
whether you have a disability, or not. Things are better. And I am so grateful to the early leaders
of the disability movement to involve NIDRR in this process, and to give me an opportunity
to provide some leadership for that. Thank you very much. [applause]>>Male Speaker: Thank you, Dr. Graves. All right. Dr. Seelman is next. Dr. Katherine Seelman was NIDRR’s director
for seven years during President Clinton’s administration. Professor Emeritus at the University of Pittsburgh,
she served as Associate Dean on Disability Programs, and Professor of Rehabilitation
Science and Technology at the School of Health and Rehabilitation Services until June of
2016 and held several concurrent academic appointments at the University of Pittsburgh,
and other institutions. In addition, Dr. Seelman, who is hard of hearing,
served in a number of important advisory roles. She served as a Senior Policy Advisor for
the National Science Foundation supported Quality of Life Technology, Engineering and
Research Center. She served on a National Academy of Sciences
Institute of Medicine Committee on Adult Hearing Health from 2015 to 2016. She served as Founding Advisor to the University
Students for Disability Advocacy, co-chair of the City of Pittsburgh’s Allegheny County
Task Force on Disability and on the advisory board of her local area agency on aging. President Barack Obama appointed her to his
nine-member advisory council, the National Council on Disability, in 2014. She was one of two from the United States
serving on the World Health Organization’s nine-member international editorial committee
to guide the development of the first world report on disability. She presented the Information and Communication
Technologies section of the report, for which she was the principle author, in 2001 at the
United Nations. She’s widely published, and the recipient
of many awards, including the University of Pittsburgh’s Chancellor’s Distinguished Service
Award in 2007. In 2015, she was a member of the inaugural
group inducted into the Disability National Mentoring Hall of Fame. Dr. Seelman.>>Katherine Seelman: I’m exhausted. I may pass. [laughter] Hello, everybody. First of all, let me thank HHS, and ACL, and
my fellow directors. I’m indebted to them all, especially since
I [unintelligible] had the legacy of Dr. Giannini and Dr. Graves in participatory action research,
which was certainly flourishing when I came in. And, hello, to all the staff here, including,
of course, the beloved NIDRR staff’s — good. This is a love-fest. It’s been going on for a little — couple
days now, for those of us who are [unintelligible] [laughs] — [laughter] — if we all are part of this community. And we are. We love this little agency. We used to call it — I don’t know if we still
do — “The Mouse that Roared.” And it’s roaring. And I thought I’d tell you a little bit about
its roaring in my time. I remember, as I was sitting here, and as
Dr. Giannini was going back into her background — by the way, she shared time at the University
of Pittsburgh. I don’t know if you mentioned that. But I was — I gave her a big hug when she
got up to Pitt. But she was onboard there, too. She’s everywhere. [laughter] So, in any case, what I remember, and this
is with the grantees, is when we pulled up to the White House in a dirty, old van, and
moved our engineering research equipment into the White House, they moved aside their beautiful
pianos. And they were having a terrible time because
we needed the internet. And President Clinton, and all the rest, stroll
by. I don’t know how many. Some of you were with me up in the White House,
certainly. And so, that’s one remembrance. And right within that, a research, who was
blind, had his equipment there. And just as Clinton was passing, the voice
output started singing, “Hail to the Chief.” [laughter] Now, how about that for research success. [laughter] I do want to continue with this line Dr. Giannini
introduced to remind you that NIDRR has a great history, internationally. And the new Director, Dr. Yeager, of course,
knows that. I remember when I was in India, you know — it
was Italy, I think, and the United States, right, Bill, and Peg?>>Male Speaker: [inaudible]>>Katherine Seelman: Right. And, within the United States, it was NIDRR
that helped us. The region had no spinal cord injury, at least
a certain level. And so, in any case, I was there a number
of times. And one time, I cut the ribbon for the meditation
garden. But I have to tell a little side story on
Dr. Yeager. [laughter] Don’t tell him that I’m doing this. I was riding an elephant [laughs] — [laughter] But Dr. Yeager had put together this great,
big sign, “National Institute on Disability and Rehabilitation Research,” and put it on
the elephant. [laughter] So, we were walking around — “What about
the republic relations?” Now, come on [laughs]. [laughter]>>Female Speaker: [inaudible]>>Katherine Seelman: So, in any case, we
now have, of course, a spinal cord injury center that serves a large region. And those were wonderful memories, too. So, in any case, I’ll tell a few more stories
and then go back and get serious, although these are serious. [unintelligible], also, talked about the international
program. But she didn’t, of course — the — all these
photo ops that could come out of the — ops of — photographs of all of these elephant
situations [laughs]. But another — one time, I was trotting off
to the National Academy of Science. And I don’t know if Bob was with me. But, certainly, I always took a strong research
scientist with me. And we were going to — we were making a presentation
on what NIDRR does. And so, they switched on the video and the
latest soap opera showed up. So [laughs], it’s not in my presentation. [laughter] So, this was the “Mother house” of science,
you know. So, it was quite a time in this particular
time of NIDRR. I also want, seriously, to note the work that
was ongoing, and I hope it’s still ongoing, on the — with the World Health Organization. And Dr. Yeager can talk about that. But having a world report on disability is
very important for common definitions of terms, demography, and policy. And I have to say that David Gray shined beyond
anyone else there. And we were very closed. And I loved him. And I know, Charlie, you did, too. So, I also have to say that in — one of the
things that was very interesting, in my time, that we did was we did a market study of assistive
technology in the assistive technology industry. And it’s very important. It’s the only data, I think, to date, we have
on that industry. So, there was a lot going on then. And, as we look around this room now, there’s
a lot going on, too, in these posters. But, to go back to today, NIHR, NIDURR, NIDLRR
— we’ve talked — the first three of us have talked about the transformative nature of
NIDRR’s understanding of people with disabilities. I’ve had a lifetime disability. And I truly appreciate the accommodations
that I’ve had in a wonderful career. But NIDRR has carried with it values of social
justice, individual empowerment, independent living, irrevocably coupled with science and
research. Not basic science, but applied science, relevant
to, “People with disabilities living their lives –” as Bill said, “– as citizens in
society.” Not scientists at the bench, but a cadre of
dedicated and skilled professionals, with and without disabilities, with a broad range
of fields, including medical, vocational, clinical, engineering, social sciences, and
architecture. And, of course, NIDRR, thank heavens, is supporting
— and, I think, lately, with Brannon, the fellowship program — and is vibrant in producing
many of our young people. However, this “Little Mouse that Roared” could
never have done it if we depended solely on a larger — budget was always a challenge. And, I suppose, even Dr. Yeager will find
it a challenge. So, having this kind of community that we
have here today, and this history, and this legacy, is very important to the continuation
and development of individual development and people with disabilities. So, in any case, my last and final words are,
“Happy Birthday, NIDRR, 40 years.” Thank you. [applause]>>Male Speaker: All right. Thank you, Dr. Seelman, appreciate that. The next director is Steven Tingus, who was
a director of NIDRR from 2001 to 2007. And, unfortunately, he could not be here today,
either. But he, also, shared some thoughts, which
we’ll read in just a minute. First, let me tell you a little bit about
him. Since 2001, Steven has served as a consultant
to business, non-profit, and in the entertainment industry executives. For the last several years, much of his work
has focused on advocating for the development of story lines in films and television that
accurately portray people with disabilities and people with health-related challenges,
as well as the hiring of people with disabilities on both sides of the camera. Following the enactment of the Rehabilitation
Act of 1973, he became the first student to be mainstreamed into public schools in northern
California. That set the stage for his lifelong advocacy
focus, and his service in a variety of roles with the American Association of People with
Disabilities, the National Council on Independent Living, and Respectability.org, just to name
a few. Prior to his appointment to the NIDRR position,
he held a variety of disability-focused positions in California, and helped craft a new freedom
initiative, which served as a blueprint for the Bush administration’s policy for support
— for supporting people with disabilities. After NIDRR, he served as the Deputy Assistant
Secretary for Planning and Evaluation for Disability, Aging, and Long-Term Care Policy
here at HHS. Steven asked us to pass on his regrets for
missing today’s event. He said he really wishes he could be here. He also asked us to pass on his warm wishes
to the NIDILRR staff. And he said he misses all of you. He said, “You’ve done amazing work here here.” And he is very proud of you. So, he, also wished NIDILRR a happy 40th birthday. Next, is Dr. Charlie Lakin, who served as
a director of NIDILRR from 2011 to 2014. But he was part of NIDILRR long before that. Dr. Lakin started his career as a special
education teacher of adolescents in New York City, and on the Navajo reservation in Arizona. And, then, moved on to spend the next 35 years
as a researcher, teacher, and community living advocate at the University of Minnesota. For 23 of those years, he served as a director
of the NIDILRR-funded Research and Training Center on Community Living. While at the University of Minnesota, Mr.
Lakin directed scores of research and training projects, and co-authored more than 300 publications
based on that work. The experience afforded him through NIDILRR,
AIDD, and other federally-funded projects, allowed him to consult frequently with state,
federal, and international agencies in matters of policy, research and evaluation, and to
serve as an expert witness in a dozen congressional hearings and federal court cases. In addition to being appointed as Director
of NIDILRR, Dr. Lakin was twice appointed by President Clinton to the President’s Committee
on Persons with Intellectual Disability. A number of national organizations have recognized
his work through a variety of research, service, leadership, and humanitarian awards. Currently retired, Mr. — Dr. Lakin serves
on the Minneapolis Advisory Committee on Aging as a board member and active chore service
volunteer of Southeast Seniors, and a volunteer, consultant, reviewer, and committee member
of several non-profit and academic organizations. Ladies and gentlemen, Dr. Lakin.>>Charlie Lakin: Thanks. [applause] Well, this event brings back so many wonderful
memories. And I’m fortunate to be able to see so many
old friends, I came to NIDRR in 2011, but my connections as a grantee go back 30 years
and 18 days, so — [laughter] — I feel, really, a part of NIDRR. I’ve always felt that the strength of NIDRR
really came from the congressional finding that was in the Rehabilitation Act that authorized
NIDRR. You know, it’s said that disability in no
way diminishes the right of individuals to live independently, to enjoy self-determination,
to make choices to contribute to society, to pursue meaningful careers, and to enjoy
full inclusion and integration into the economic, political, social, cultural, and educational
mainstream of this society. And I think NIDRR sits right in the gap between
that promise and what really happens in the daily lives of people with disabilities. It’s a privileged place, but a place of great
responsibility. There’s so much yet to accomplish, so many
challenges, and so little money. We could double NIDRR’s budget tomorrow and
it would still be too little. Let’s double NIDRR’s budget tomorrow. [laughter] [applause] Despite all the limitations, looking back
over 40 years, life has changed so much for people with disabilities. We know that through personal life stories;
we know it through the policies enacted, and we know it through statistics. I spent my career focused on developmental
disabilities, primarily. In 1977, the year before NIHR was founded,
there were 187,000 people with developmental disabilities incarcerated in public developmental
disability or mental health institutions. Today, that number has been decreased by over
90 percent. That’s the kind of change that — [applause] — that our national commitments have brought. We’re not done yet but we’re moving. I don’t have much time here, so let me observe,
first, that I just think that NIDRR has been blessed with the most remarkable staff. The agency is so small, its staff just need
to be so committed, so dedicated, and so talented, and NIDRR just has that in surplus. Ruth Brannon has been such a remarkable force
in NIDRR, I honestly don’t know how she’s ever going to be replaced, but someone else
is going to have to figure that out. I still miss the evening chats over policy
and research and other esoteric matters with Margaret Campbell. I could just mention, with fondness, interactions
with all the staff. I miss the weekend get togethers with Bob
Williams and Henry Claypool and Sue Swenson — who sends her regards. She’s in Spain, working as President of Inclusion
International, but wanted me to say that, in her mind, NIDRR is not only key to disability
research in the United States, but it’s an important source of research worldwide. Sue was acting director of NIDRR when she
recruited me to come, talked me into retiring from the University of Minnesota and coming
here. It was a hard decision, but knowing that Amy
Hewitt would step into my shoes, I knew at least the University of Minnesota would be
better off. This is how I think, in some ways, too — NIDRR
owes a great, great gratitude to the many people who have stepped in as acting directors
over the years. They’re not recognized but they’re very important. When I was asked whether I would come tonight,
or — I drew up a list of eight or nine things that I would want to accomplish when I was
here. And I thought, “Well, if the department doesn’t
buy into these, well, I’ll just stay where I am, maybe work for Amy.” One of the things that I said I really needed
to get done was to publish a long-range plan, which was overdue — and I was going to do
that quickly, because it was so overdue. [laughter] Well, I learned right off the back that “quickly”
doesn’t happen in the federal government. I also wanted to put together a disability
research advisory committee that was actually mandated in the reauthorization of NIDRR. So, I went to the department leadership and
said I wanted to do this, and they said, “Yeah, we see it’s mandated, but we don’t want Congress
to see us as expanding the bureaucracy.” So, I said to them, “But they’re the ones
who said we need to do it; it’s in the law.” They said, “Yeah, well, let’s — still, let’s
just put it off until after the next election.” That’s how things go in D.C., I guess. I did want to expand NIDRR’s engagement to
a wide range of other federal agencies. I was particularly interested in ACL because
I saw it as the gateway to many important programs. I particularly wanted to connect it with the
research and training centers and with the ADA centers, and I talked to Henry Claypool
about that a lot. And one day, I walked into his office and
he unrolled this sheet of paper, and it was a diagram of ACL, much expanded. And in it was NIDRR. And two years later, through the legislation,
that’s where NIDRR ended up, cementing Henry’s vision. And I think the plan was logical, and the
best I can tell, it’s worked out pretty well. Well, there are so many things that impressed
me while I was at NIDRR: the remarkable staff, the remarkable grantees. As a non-technical person, I just love the
discussion of — with the engineering centers and projects, the visits of Greg van der Heijden,
the discussions with Clayton Lewis, the meetings of the RERC’s — they were all pulsing with
possibilities, and fortunately, Tom Corfen was there to explain to me what they had all
said after they left. [laughter] I could go on and on. It was a joy to be part of the NIDRR staff;
it was a joy to work with wonderful people throughout the government. I think the disability advocacy community
in D.C. is made up of just true humanitarians. I’ve loved the trips to The Hill with the
Senate staff; I’ve loved having Arne Duncan and others come to NIDRR to hear what we were
doing. I loved visiting the access board and the
national council. It was all just so wonderful. I knew I would miss that and so much more,
but I also knew that when I could turn my job over to an amazing person like John Tschida,
a person with a lived experience with disability, it was time for me to move on. But today, it’s awfully nice to be back, so
thank you. [applause]>>Lance Robertson: Thank you, Dr. Lakin. All right. Next, we do have John Tschida. John served as NIDRR’s director from 2014
to 2017, overseeing its transition to the Administration for Community Living from the
Department of Education, and ensuring the continuity and integrity of NIDRR programming. Currently, he is an associate executive director
for research and policy for the Association of University Centers on Disabilities, AUCD,
which is a national network of 133 university-based inter-disciplinary programs. Mr. Tschida has spent the last 20 years using
data and research to drive policy change and service development for individuals with disabilities. Prior to joining NIDRR in 2014, he served
as Director of Public Policy and Innovation at Allina Health in Minnesota, where he developed
integrated health delivery systems and financing models for people with disabilities. At the Courage Center, Minnesota’s leading
non-profit provider of rehabilitation services, Mr. Tschida was Vice President of Public Affairs
and Research. There, he built and directed a policy and
research team that focused on defining and achieving better outcomes for complex populations. His team received one of the first Healthcare
Innovation Awards from CMS. Early in his career, Mr. Tschida served as
a research fellow at the National Rehabilitation Hospital Center for Health and Disability
Research in Washington, D.C. He was also Assistant Director of the Minnesota
House of Representatives Public Information Office. He served on a number of public and private
boards designing policy and governance solutions to further the independence of people with
disabilities, and he has written numerous articles on disability and public policy for
national and local publications. Mr. Tschida. [applause]>>John Tschida: Thank you, Lance. Charlie and I were chatting before the program
started. There are three, I hope everyone noticed,
directors from Minnesota. [laughter] Minnesotans in the room, former Minnesotans? A few, thank you. And we’re going to claim David Gray as an
honorary Minnesotan, since he got his advanced degrees there, too. So, a full 50 percent, which I think is — [laughter] — fantastic. If there was a theme to my tenure as Director,
I think it is “transition.” During my three years, we changed departments,
we changed locations, and we changed the name of the organization. And Lance mentioned two very important words
in talking about moving to ACL, and those were “continuity” and “integrity.” I think that was my priority as Director,
and certainly our priority as a leadership team, to ensure that when we landed at ACL
from the Department of Education that it was a soft landing. And there was an awful lot of work that went
into doing that — not just the transition team that was charged with transferring departments,
but internally. We needed to rewrite the entire rule that
really explained what it was that NIDILRR did, and in some cases, why they did it. And Charlie has mentioned Ruth Brannon; I
can’t speak highly enough of her. Certainly, she had a strong supporting cast
to help her in proofing what became a much leaner rule. HHS takes a very different approach to rule-making
than does the Department of Education, but in that leanness, I think we were successful
in preserving the integrity of the organization. And based on the work that Bob and the staff
continue to do today, it does continue to thrive. In terms of the name, adding the words “Independent
Living,” I would argue that just about everything that NIDILRR does contributes to that ultimate
outcome, and always has. I recognize the need for including those letters
and why some of the advocates wanted to do that and felt very strongly about it. But in looking at the three major domains
that NIDILRR funds, you have your medical rehab, employment, and community living. In our first meeting with Kathy Greenlee,
the administrator of ACL, when we were teaching her about NIDILRR and all the good things
that it did, she looked at the domains and said, “So, what don’t you fund?” [laughter] And I would say, and other staff members at
NIDILRR have said, “It is a — the blessing and curse of the organization that there’s
very little that you cannot fit into those three domains. So, in the field-initiated competitions, you
see the cream rise to the top and a very diverse set of programs, interventions, processes,
products, policy analysis that’s proposed there. And I think that’s as it should be. People with disabilities lead very complex
lives. They often need a complex array of services
and supports to ensure their independence, their quality of life, and the meaningful
social participation that NIDILRR and ACL stand for. And as Charlie said, there is tremendous need,
there is tremendous latent demand for research. We know an awful lot, and this organization
has contributed a ton to the science over the last 40 years, but there’s still a tremendous
amount that we don’t know and need to know in order to benefit people with disabilities
going forward. Moving to a new location was a logistical
nightmare, as my Deputy Director Kristi Hill, that Charlie, in his wisdom, decided to hire. She bore the heaviest load within the agency
in helping us to make it to the second floor of the Switzer Building — back to the Switzer
Building — so, I want to thank her in particular, but the entire leadership team for their contributions
to making that happen. Personally, and not — continuing the theme
of transition, I wanted to fund a few projects at NIDILRR before I left that recognized the
changing needs of our healthcare system when it comes to people with disabilities and the
disability context. We have seen managed care take over, especially
in a Medicaid context, integrating the long-term services and supports, those needed community-based
services to go with the medical services, and health plans don’t always understand those
long-term needs. So, it’s critically important that we better
understand how they are measuring success, how we should be measuring success, so we
did fund a research and training center on outcome measurements that now lives at the
University of Minnesota. And similarly, I thought it was critically
important to understand where there was creativity happening on the service delivery side of
healthcare, when it came to people with disabilities. So, there’s a funded project at the University
of Pittsburgh — okay — that is looking at that. And the first order of business was, establish
a literature review to really look at where there is creativity happening in the health
service system. Where is there flexibility that, regardless
of financing mechanism, either providers or health plans are looking to do outside-the-box
things, traditionally non-reimbursable services, in order to ensure health and quality of life
outcomes for people with disabilities? So, NIDILRR also needs to be responsive to
the needs of the disability community. And, like Charlie, I wanted to have a — at
least, a strong, robust draft of a strategic plan before my tenure ended. So, we went to six, seven, eight cities around
the country and we listened. We heard a lot about it as a functional health
system, and we heard a lot about the need for technology. We heard a lot about transportation challenges. And one of the things NIDRR [sic] does very
well is to insert itself when there are critical leaps or advances in technology or innovations
that will affect the entire population, and make sure that there is a place for people
with disabilities in that innovation space. So, it was talked about in the introductory
remarks, the effect NIDILRR had on influencing computing technology, assistive technology,
making sure that there were adaptive and accessible options with computers that, now, all of us,
on our phones now, take for granted. There were universal design standards that
were developed by NIDILRR to ensure that housing and the built environment was also incorporating
the needs of individuals with disabilities, all kinds of disabilities. And this transportation juggernaut, that continues
to be the bane of every person with a disability’s existence, for those who don’t drive — as
we move toward autonomous vehicles, people with disabilities need to be a part of that
conversation. That partnership started under Charlie’s leadership,
with Mohammed Yousuf at the Department of Transportation. We had another priority while I was director
to look at: robotics, in the context of transportation — to ensure that those considerations were
being incorporated into the next transportation wave that we will all be experiencing, and
I think that’s critically important. And finally, I — Charlie’s already done this,
but I can’t say enough about the committed, passionate, and brilliant staff that this
“Little Engine that Could” agency has. The depth of content knowledge, the commitment
to the mission, the understanding of disability, which is critically important. I was at an event yesterday where Bob Williams
talked about the importance of that understanding, and without that understanding, you can often
be making decisions that are not always in the best interests of those with disabilities. So, the profound commitment, the understanding
— it was very easy to lead this organization, given the infrastructure, the commitment of
the staff, everything that the gentlemen and women to my right, your left, had put in place
prior to my arrival. So, Bob, I hope you found the agency in good
hands when you took it over. It has been a privilege and I feel very lucky
to have led the agency, and I’m certainly thankful to the previous directors for all
that they’ve done, and to Bob for what he continues to do as this agency thrives into
the future. So, thank you. [applause]>>Female Speaker: Thank you, John. So, will all of you join me in recognizing
40 years of NIHR, NIDRR, albeit NIDILRR leadership. [applause] So, as you’re departing, I want to mention
you — all of you truly represent history in the making. As many aspire to do but few achieve, you
have left an indelible mark on all of us, our partners, and our country. We will continue to build upon the foundation
that you have laid, working towards our shared vision that you established: a world in which
all people are able to live independently and fully-integrated into their communities. So, as we transition from our leaders of the
past, we will be bringing forward leaders today, who will become leaders coming forward
in the future. So, we’re going to spend a minute allowing
our guests and leaders of the past to trade places. And so, I know as they transition off — I
will share with you that, even though you think you’ve heard all of the interesting,
landmark accomplishments of NIDILRR in the past, to listen to these leaders share some
of their recollections is kind of an extra treat, to hear that additional information. So, let me call forward — now, we’re going
to hear from some of the people who represent, as I mentioned, the future work of NIDILRR
— several of the 2018 Mary Switzer fellows. So, I’m pleased, we’re — she’s coming around? She’s coming around behind me, huh? Wonderful. So, I’m pleased to bring forward Dr. Kristi
Hill. So, as John Tschida mentioned a moment ago,
the acting director should also be recognized. And when Lance and I came to ACL, Kristi Hill
was that individual serving as an acting director, and she served in that capacity for quite
a while, until we were able to identify Dr. Jaeger as our current director of NIDILRR. So, we have — we’ll take this moment to recognize
those acting directors of the past and the most recent acting director, who is Dr. Kristi
Hill. So, she currently serves as the Deputy Director
of NIDILRR, and she will tell you a bit about the Switzer Fellow Program and introduce each
of the fellows who will be speaking today. Dr. Hill — there she is. Thank you. [applause]>>Kristi Hill: Good afternoon, everyone. And I know that we are running behind, so
I’m going to move this right along. I’ll start by saying that NIDILRR takes very
seriously its commitment to build capacity in the field of disability and rehabilitation
research. The Mary E. Switzer Fellowship Program is
one of several capacity-building programs in the NIDILRR portfolio, and it’s the only
funding mechanism where we provide funds directly to the individual carrying out the research. Over the years, NIDILRR has funded hundreds
of Switzer fellows, and many of them are here in this room today. These are leaders and trailblazers and groundbreakers,
each in their own right. Many continue to conduct cutting-edge, NIDILRR-sponsored
research. NIDILRR is extremely proud of our fellows
and the contributions that they’ve made, not only to advance the state of the science,
but to improve the lives, ultimately, of people with disabilities. As we speak, the current class of fellows
is busy wrapping up their projects. Today, we have three fellows that are here
to share a brief overview of their work. The next voice that you hear will be that
of Dr. Peii Chen. Dr. Chen is a senior research scientist at
Kessler Foundation, and a research associate professor of physical medicine and rehabilitation
at Rutgers University, at New Jersey Medical School. Trained as an experimental cognitive psychologist,
Dr. Chen started out her post-doctoral career in 2007 and became a neurorehabilitation scientist
with a focus on spatial cognition and its disorders after brain injury, especially stroke. Dr. Chen is devoting her career to the study
of spatial neglect, its disorders, and its related interpersonal consequences, such as
family caregivers’ burden and stress. Her study findings have become her voice advocating
for better rehabilitation healthcare and family caregiver support. Following Dr. Chen, you will hear from Dr.
Jongsang Son. He received his PhD from Yonsei University
in Wanju, North — South Korea in 2014. Dr. Son also completed his post-doctoral research
at Yonsei University. In 2015, he joined the Sensory Motor Performance
Program at the Rehab Institute of Chicago, where he is currently a post-doctoral fellow
at the Shirley Ryan AbilityLab. He is also undertaking post-doctoral work
as a fellow in the department of physical medicine and rehabilitation at Northwestern
University. His career interests are focused on structural
and mechanical changes of stroke-impaired muscle, electrophysiological properties of
motor neurons after stroke, and neuromuscular skeletal biomechanics. The last Switzer fellow you’ll hear from is
Dr. Crystal Noller. Dr. Noller received her doctoral degree in
health psychology in 2014 from the University of Miami. Her graduate work examined the role of sympathetic
nervous system hyperactivity in a pre-clinical model of atherosclerosis. Her current research evaluates the use of
neuromodulation, specifically vagal nerve stimulation, to modulate the autonomic nervous
system and immune systems after neurotrauma. Dr. Noller is a current — is currently a
post-doctoral trainee in the lab of Dr. Mark Nash at the Miami Project to Cure Paralysis
at the University of Miami Miller School of Medicine. She is the recipient of several grant awards
for her work on the vagal nerve stimulation after spinal cord injury, including funding
from NIDILRR. Dr. Noller will be expanding her research
on neuromodulation after neurotrauma through an advanced post-doctoral position she was
awarded from Dartmouth-Hitchcock Medical Center. So, I will sit and let you hear from our fellows. [applause]>>Peii Chen: Hi everyone, my name is Peii
Chen, as introduced. So, in 2007, when I first started, after I
got my PhD, I went to Kessler Foundation. And I just realized that, at that time, Kessler
Foundation is the recipient of NIDILRR’s training center grants. So, coming full circle now, I’m a Switzer
fellow and also, I’m a principal investigator of a field-initiated program. So, at this point, I want to shout out to
my probate officers, both Amanda Richert, who’s my probate officer for Switzer award,
and Steve Bauer for my field initiate award. So, here’s my disclosure. So, I’ve worked with stroke survivors since
20007, and it’s a significant problem in the rehabilitation field. Every year, more than 795,000 Americans have
a stroke, and more than 80 percent survive the stroke. An estimated 7.2 million American adults are
stroke survivors, and this number is very likely to increase because the population
is ageing, and the stroke survival rate is improving. But stroke is not just a one-time event; stroke
is actually the leading cause for disability in American adults. Regaining functional independence after a
stroke can take years. One factor prolonging the discovery significantly
is spatial neglect, which is the topic I’ve been studying for more than a decade. And before I tell you what spatial neglect
is, I’m going to tell you another number. So, this syndrome occurs in 50 percent of
stroke patients and 30 percent of TPI patients in inpatient rehabilitation facility settings. And Kessler Foundation is physically connected
to Kessler Institute for Rehabilitation, which is a rehab hospital where I get all my research
participants. That’s how I get these stats. It’s a very common problem in this population. So, spatial neglect is a syndrome of impaired
spatial attention. So, most of the individuals that I work with
— they have right-brain stroke — or right — so, right side of the brain — so then
we have two hemispheres. Right side of — when the right side of the
brain is damaged, because of a stroke or a — or brain injury, they will pay last attention
to the left side — to the opposite side of the space. So, for example, here on your left side is
a — it’s an example of a symptom. So, this is a copy task. The individuals are asked to copy the entire
scene down on that page. And this individual has right-brain stroke. So, pay much more attention to their right
side, and neglecting the left side. Another example on your right-hand — it’s
a, so-called cancellation task. So, the task is to cancel out the small star
— there are targets on this task. And this individual is paying less attention,
or no attention at all on the left side, and paying a lot of attention on the right side. So, that is an example of that symptom. Also, it affects daily function. So, this is a reading task I did with one
individual. So, I asked him to read this paragraph. I have the exact same paragraph in my hand,
and I underline the word he read. And so, you can see, he’s not paying attention
to the left side, and starts reading from his middle and goes all the way to the right. So, it affects daily life a lot, especially
for reading, or dressing, or going and using a toilet. It also — attention is a fundamental mechanism
for all things that we do in daily life. In a rehab setting, it affects posture, and
balance. So, this individual — you see this person
— when I take this picture — this is her default sitting posture. So, her subjective center’s all the way to
the left because he’s — to the right he’s neglecting. So, the other — the last picture — another
example, this gentleman only shaved the right side of his face the day that — when I took
this picture. So, I want — the reason I spend a lot of
time talking about this syndrome is because my project under Switzer problem — not Switzer
problem, Switzer award, is to help these individuals by talking and working with the clinicians
and their family members. Because, these individuals — they are neglecting
the space around their body, and also, they usually do not know they have neglect syndrome. So, my Switzer project is to help clinicians
and family caregivers working with the patient together, while the patient’s still in an
inpatient rehabilitation setting. So, the goal is to help them to work with
each other, even though there is a lot of family training already existing in a lot
of rehab hospitals, this project allows me to create a more structured model, to help
them to — because family members, they visit patients almost on a daily basis. When they visit the patient, they don’t necessarily
have to just sit outside, or watch T.V. with them, but they can do very simple things to
increase the training and help them to practice outside therapy sessions. So, this is the goal of the — of the — the
framework of the project. And currently I’m still collecting data. I hope in a year I will share with you the
data. Right now — so, we’re recruiting both family
members and the patients into the project. We’re halfway done and hope — really hopefully
in a year I will share good news with you all. And I hope to see you later in the break if
you have questions.>>Female Speaker: Thank you. [applause]>>Jongsang Son: Good afternoon, everyone. My name is Jongsang. I was a postdoc working with Dr. Rymer at
the Shirley Ryan AbilityLab — formerly Rehabilitation Institute of Chicago. First of all, I’m really happy to be here,
and I would really like to give congrats on the fourth anniversary celebration. And I would like to thank all of you to join
this great celebration. Yeah, my research topic is to understand the
muscular mechanism of muscle weakness after a stroke. So, as you know muscle weakness is one of
more — major — more impairments after a stroke. So, since brain — since a stroke is a brain
injury, so many researchers have focused and discovered what may cause — what may contribute
to muscle weakness after a stroke. However, we also know that there is a secondary
change in muscle architecture and the muscle material properties after a stroke may lead
you to the disuse. So, now we want to understand what is the
muscular mechanisms of muscle weakness, and to better — to potentially give — suggest
a rehabilitation strategy for clinicians and for stroke survivors. So, I’m using the ultrasound imaging technique
to understand the muscle architecture. And, this figure is the ultrasound representative
— ultrasound image taken from the medial gastric — calf muscle in chronic stroke survivors. So, from this image, the muscle architecture
parameters, such as fascicle length, pinnation angle, and the muscle thickness were determined
as a function of contraction intensity. So, as you can see here, as muscle activation
increases, the fascicle length decreases, pinnation angle increases. As a result, we can see that in paretic side
— on paretic side, impaired muscle after stroke showed a significantly reduced fascicle
shortening and fascicle rotation, compared to the non-paretic side. So, we assume that these are associated with
the muscle weakness. So now, I’m trying to understand what and
how these different muscle behaviors is happening in chronic stroke survivors. Throughout this Switzer fellowship, I’m working
on the paper, of course, and I had a good opportunity to give three symposium talks
at major conferences. And, one of them, I received a Young Investor
Award. And, recently I got a stroke research city
grant as of P.I. Actually, the Switzer fellowship was my first
try ever, and first grant that I got. So, I really appreciate to have — to give
me this great opportunity, and to develop my research career. And, thank you very much. [applause]>>Crystal Noller: Hi everyone, I’m Crystal
Noller, and I’m currently finishing a postdoc at the Miami Project to Cure Paralysis under
the mentorship of Dr. Mark Nash, who is a codirector of SCI model systems. So, when people think of spinal cord injury,
most people think of the primary or mechanical damage to the cord, or they think of someone
who can’t walk. But SCI is characterized by a host of secondary
complications that greatly impact health and quality of life after injury. My research focused on interrelated dysfunction
in the autonomic nervous system and immune system that can occur after injury. Specifically, autonomic dysfunction can lead
to a severe, and potentially life-threatening medical complication that’s known as autonomic
dysreflexia, where noxious stimuli below the level of injury can cause a mass autonomic
reflex. This condition greatly impacts quality of
life and is a high priority for people living with SCI, because it can occur daily, and
up to 90 percent of people with a high-level injury. But the current treatment is limited. Autonomic dysfunction can also exacerbate
the chronic inflammation that can occur as a result of common secondary complications,
such as: pressure ulcers, or urinary tract infections. We know that chronic inflammation can increase
the risk for cardiovascular disorders after SCI. So, the purpose of my study was to examine
whether neuromodulations, specifically vagal nerve stimulation, could be used to address
this dysfunction. Why did I think this might work? Well, vagal nerve stimulation, or VNS, is
a current FDA approved therapy for certain conditions, such as: epilepsy, or treatment-resistant
depression. But, in the last couple years, there’s been
growing interest in the use of VNS for other disorders. And, importantly, extensive preclinical, and
current clinical research shows that VNS can be used to reduce inflammation, and there’s
also evidence that VNS can alter activity at the autonomic nervous system. So, the purpose of my Switzer fellowship was
to examine whether we could use VNS to address the autonomic and immune dysfunction after
spinal cord injury. And, to test this idea, I used an experimental
preclinical model of SCI with rodents receiving or not receiving VNS. I gave a daily treatment — single treatment,
beginning one day post-injury, to animals according to published reports. And, I evaluated cardiovascular responses
in vivo using wireless telemetry to look at autonomic dysreflexia over time. I also looked at peripheral blood cytokines
and catecholamines over time. And I’m looking at some mechanisms that have
been related to autonomic dysreflexia, and the study is currently ongoing — I forget
to put all these up — and the study is currently ongoing. So, I wanted to thank ACL and Idlor for the
support of young trainees. To my current mentor — my current funding
sponsors, and the many people who help me with this and supported me in this work, thank
you. [applause]>>Female Speaker: So, to our Switzer fellows,
we want to say, “Thank you for sharing a peek into the work of the future and your future
work — all the best to you.” And what I would like to do now is –>>Male Speaker: Change.>>Female Speaker: — is change. I would like to change. [laughter] What are we doing now?>>Male Speaker: We’re going to take the break.>>Female Speaker: Oh, there you go. That sounds like — [talking simultaneously]>>Male Speaker: Okay, logistical details,
we had a big counsel of the organizational minds here. The cafeteria closes at 3:15p.m. and it’s
on the top floor — the penthouse. And, even if you don’t get up there fast enough,
there is any area off to the side of the cafeteria that is one of these — you pick your item,
you scan it, you pay for it, and there’s no person. So, everyone be honest, it’s under T.V. surveillance,
but — [laughter] — if you need a soft drink — well, this
is the government, you know. Okay, so. So, we are going to break now, and we’ll continue
with the agenda after everyone’s had a chance to get up and stretch, use the facilities,
and go upstairs to the penthouse if you need a bottle of water or snack. So, sorry about the change, but this always
happens at meetings like this, right? Okay. Break time. Thank you all.>>Female Speaker: Produced by the U.S. Department
of Health and Human Services at tax-payer expense.

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