ACL’s Nat’l Institute on Disability, Independent Living & Rehab Research – 40th Anniversary, Part 2

>>Thank you all for coming
back to join us for a bit more of this program. I hope everyone enjoyed the opportunity to
take a quick break. We appreciate that you made it quick. Thank you all for gathering back. So, appreciate you all coming back. You’ll have plenty of time after the program
hopefully to enjoy any posters that you did not have the opportunity to view yet. So at this time what I would like to do is
introduce Ruth Brannon. So if you haven’t heard of Ruth Brannon, today’s
your first day here. Because the force — “The force be with you,”
I guess that’s what we’ll call — we’ve heard, “The mouse that roared,” and “The little engine
that could.” This is, “The force be with you.” Ruth Brannon serves as the Director of the
Office of Research Sciences at NIDILRR and I’m going to turn the program over to Ruth
to introduce the guests that she has with her. Thank you.>>Ruth Brannon: Hi everybody, it’s a real
pleasure actually to be here, and it’s a pleasure to have these three people who are long-term
NIDILRR grantees, very accomplished people, and very thoughtful people. So I’m going to one by one — Mike — Dr.
Michael Boninger is first, and I�m going to read a little bit about him and then ask
him to do his presentation. So Michael is a professor and the University
of Pittsburgh Medical Center endowed vice-chair for research. He is — he has joint appointments in the
Department, I’m sorry, the Departments of Bioengineering, Rehabilitation Science and
Technology, and the McGowan Institute of Regenerative Medicine. He’s the senior medical director for Post-Acute
Care in the Health Services Division of UPMC and he’s a physician researcher for the United
States Department of Veteran Affairs. And I’ve known him a long time, he’s a really
good guy.>>Michael Boninger: Half the people are probably
laughing because they know I’m not a really good guy, and the other half are laughing
because they thought it was funny. So I have to tell you that I have this long
history with NIDILRR including the research enrichment program for [unintelligible] which
is a program to attract residents into research careers, nd so — and back into a post-doctoral
fellowship, and so it’s really quite an honor to be asked to give a presentation that highlights
the importance of the work. The obligatory disclaimer slide is up there. And I’ll tell you that when being asked to
highlight the importance of NIDILRR’s work, is a challenging task and I felt like maybe
a strong way to do that was in the form of a story. So Jamie is a 24-year-old who is celebrating
a new job. She spends the afternoon celebrating with
a friend who has to pick up her child from preschool and the two of them borrow a friend’s
jeep and go to pick up a two-year-old from preschool. Jamie has no idea how drunk she is, and her
friend has no idea how drunk Jamie is or she is, and they drive along a road and veer off
the side of the road and hit a drainage ditch. The damage to the jeep is minimal but because
Jamie is not wearing her seatbelt, she is thrown from the jeep, and her friend and the
baby are secured in, so the only injury is a broken arm for the child, which is able
to heal. She’s taken to Altoona Hospital where initial
assessment is done. It shows a complex fracture of her shoulder. She has bilateral collapsed lungs, and a very
bad fracture in the thoracic spine region. Her family is told that it may not be worthwhile
for them to drive to Pittsburgh because it’s not clear that she’s going to survive the
Life Flight to the intensive care unit. She arrives at UPMC and is immediately admitted
to an ICU. She’ll spend seven weeks in the ICU, battling
with pneumonias, with urinary tract infections, and the ICU team will meet and discuss her
care. While she’s in the hospital, she’ll be offered
a trial, to become part of a stem cell therapy trial, but she’ll find that she is not qualified
for that trial, and while also in the acute care setting, she’ll be asked if she’s willing
to join the Model Systems grant. To which, with her family’s urging, she’ll
say yes. I’m going to pause here for a second and tell
you that before the Model Systems grant started, the fact that an interdisciplinary team would
meet with the ICU, with rehab involved and therapy involved, would have been an off occurrence
at maybe one center in the United States. What I can also tell you is that the spinal
cord injury doctor who took care of her is 95 percent likely and maybe higher than that
to have trained at a Model Systems setting or with a — someone who has trained at a
Model Systems setting. Because that is the impact that the Model
Systems have. The Model Systems are, for those of you who
are not familiar with, are the largest data base in the world for spinal cord injury,
and because of the Model Systems grants we know what prevention programs we have to put
in place. We know about drunk driving as a cause for
that, we know that rapidly, violence is taking over as a cause for injury in our urban areas. In addition, that drug — that stem cell trial
she’s asked to be a part of, almost all of the major stem cell trials that take place
in the United States in these academic settings use Model Systems as a home and as a place
where they can recruit patients. Jamie is taken from the ICU into a rehabilitation
hospital. The rehabilitation hospital does something
immediately, which is they do an ASIA examination — an examination that quantifies in very
rigorous terms her strength, her sensation. And from that they’re able to tell her how
she’s likely to do with the injury that she has. They notice that she’s depressed, and immediately
start her on an antidepressant medication which is guideline-driven. And they start her exercise routine. Almost every aspect of the exercise routine
is guided in some place by the Model System centers. You’ll see on the slides that I put references
for specific papers that I quote. I look in the room and I see people who are
responsible for these important studies: University of Washington teams that looked at depression,
Craig Hospital teams that looked at dissecting the — what takes place in rehabilitation
and how that intersection between what takes place in rehabilitation leads to function,
and what characteristics lead to that. So every aspect of her care is guided by a
Model Systems study. And maybe as importantly, if you cannot measure
it, if we don’t know her injury level, how do we know that the treatments are working? And the injury level is also something was
determined through Model Systems research. She’s talking to her clinical team and like
almost every single patient who has a new spinal cord injury, she’s very disappointed
to find out that it’s very unlikely that she is going to be ambulatory. So she’s introduced to a wheelchair which
is disappointing to her. We look at data that tells us whether she
can be ambulatory or not, and that’s important because we want to spend as much time in training
her how to use her wheelchair. We know from Model Systems studies that if
we train her — we try to train her to walk and she’s unsuccessful, that she’ll see that
as a failure and it will likely have long-term impacts for her. She has an option of wheelchairs to pick because
of Model System and RERC-funded studies that actually originated this wheel that you see
in the lower center that is a power assist wheelchair that was really co-developed by
industry and the Model Systems and the RERC grants. She is told which wheelchairs are less likely
to break down, and she’s told how to take care of her chairs by therapists on the unit
who are informed by Model Systems studies. That happy and terrifying day comes along
where she’s worried about going home, and we talk about going home. She has a — she gets online and takes a tour
of all the materials that are available to her, and there’s a Model Systems translation
center, a knowledge translation center. What agency says, “We’re going to fund a center
that makes sure, that has published research – one of the references here – that we’re
doing everything we can to get the knowledge into the hands of the people who use it.” So she knows going home that she’ll have these
activities — different places she can click to learn how to take care of her chair, to
learn how to transfer, to learn how to do what she needs to do to prevent pressure ulcers. She’ll be given catheters that were tested
at Model Systems sites, and she’ll likely have a peer counselor who will talk her through
all of her needs because peer counseling is also something that has been investigated
in the Model Systems center. She comes back a year later and has a long
list of questions. It’s the same questions we all ask. She wants to know about having children. She wants to know about working, and she wants
to know about recreation. Because of Model Systems studies, we know
that actually if you’re involved in wheelchair sports, you’re more likely to also be employed. We know what the chances are for her to be
able to conceive a child, and much of the research that has — shows that, and has advanced
that science, has taken place in Model Systems areas. She talks through this with her doctor and
a researcher comes into the room and says, “Hey I’m from the Model Systems grant, we
met a year ago, and I need to collect your annual follow up data.” And she says, “I don’t even remember consenting
for the study. You know, why would I want to be in the study? What it important about the Model Systems
grants?” And the researcher sits down on the bed and
says, “Well let me tell you about that a little bit.” So the important aspect of this study is that
it’s a true story, right? This story was not made up and this story
repeats itself not only in the model spinal [unintelligible] systems but in TPI Model
Systems and across the United States where people’s care has changed. This is the last picture that Jamie has before
her injury with her brother. And this is the picture of her with her current
boyfriend who she would marry except for it changes her tax situation. This is her exercising her right to get injured
doing sports like all of us do every single day, and this is the home that is not accessible,
that requires modifications, that takes advantages of the changes in wheelchairs and in other
technology that has enabled her to live independently. And maybe most importantly to her — by the
way notice her wheelchair is a power-assist wheelchair. This her adapted crib and her taking a picture
as pregnant. And this is Calvin, her son, who is two-years-old
and being raised in a happy family by a happy mom. So I want to take a moment to step back from
this and tell you again that the impact of this agency that is so uniquely focused on
disability, on getting hands into the people who need the information the most, about making
sure that the research is done with the participants, not necessarily on the participants. I need to thank the agency for the parts of
— the small parts of that research that I was involved with. The Model Systems centers, all of them and
all of them throughout time have, throughout their existence, have contributed to this
talk in one way or another. I would like to learn from the trainees here
and thank my program officer Theresa and — officers Theresa and Pinjay [phonetic sp], who have
been wonderful to work with and help guide the work. And I’d be remiss if I didn’t thank my friend
Ruth, who has also been a shining light in my research career. I appreciate your attention. [applause] There are at least a hundred more references
that I could have included on this short list.>>Ruth Brannon: So the next person who’s
going to speak is Dr. Judith Cook. Judith is a professor of psychiatry, and director
of the Center on Mental Health Services Research and Policy at the University of Illinois Chicago. She is an internationally recognized authority
on mental health services research, specifically the study of clinical and rehabilitation outcomes
of children and adults serving community-based care. She’s also a good guy.>>Judith Cook: Thank you, Ruth. I’m very honored to be here with you today
at this celebration of NIDILRR’s 40th anniversary. The agency has supported our research for
the past several decades, and I’d like to acknowledge this support and the funders of
our current rehabilitation research and training center including both NIDILRR and SAMHSA,
the substance abuse and mental health services administration. And more about SAMHSA in a moment. I’d like to open with this thought, which
is that he road to success is always under construction. This speaks to the constantly changing and
evolving nature of the problems we tackle in the field of disability and rehabilitation
research. In my own career, these problems and opportunities
relate to helping people with psychiatric disabilities live full and meaningful lives. These are people with diagnoses such as schizophrenia,
bipolar disorder, and major depression who have difficulty living independently, furthering
their educations, working and socializing with others. I’m here today to tell you briefly about NIDILRR’s
important role in increasing societal understanding and acceptance of people living with psychiatric
disabilities. The agency has played, and continues to play,
this role by identifying and funding important research and training that has allowed millions
of people to leave unnecessary congregate living facilities, take their place in the
workforce as well as in America’s colleges and universities, and enter the social mainstream. I’d like to set the stage for my comments. In the late 1990’s, at the drafting of the
first ever U.S. Surgeon General’s Report on Mental Health, in 1999, followed in the early
2000’s by the convening of the President’s New Freedom Commission on Mental Health. A major outcome of both efforts was calling
attention to the fact that with deinstitutionalization from state mental hospitals in the 1950’s,
60’s, and 70’s, the money for care and services had not followed people out into the community. As a result, there existed a highly fragmented
and severely underfunded system of care. This graphic is an example of what a person
with a psychiatric disability faced in getting the care they needed in the state of Maryland. A bewildering array of state and local agencies
and programs, all with different entry criteria, and little coordination between agencies of
their services and supports. It was up to the service consumer to negotiate
a pathway though this maze in order to get the care they needed. And lest you think I’m picking on the state
of Maryland, this was the situation in every state in the United States at that time. The underfunding I referred to earlier was
exacerbated by the massive state cuts to mental health funding following the 2008 recession. In that period of time, the country lost over
$1.6 billion in state mental health funding, most of which was never restored. In the midst of these massive shifts in the
community treatment of mental illness, the field redefined the outcomes of care. Starting with the U.S. Surgeon General�s
Report no longer was the end goal seen as cure or complete remission of symptoms, but
borrowing from the paradigm of chronic physical illness, the notion of recovery was established
as a goal of treatment and rehabilitation. Recovery refers to a life of dignity and purpose,
despite any residual symptoms. It reflected a growing optimism, based in
empirical research, that showed that people not only got better from mental illness, but
those who receive rehabilitation and learned self-care became full participants in their
communities as workers, spouses, parents, and friends. The New Freedom Commission on Mental Health
took this one step further, calling for transformation of the system of care. No longer was the mission of mental health
reform, as it was after deinstitutionalization, but notions were put forth that for example,
every adult served in the mental health system should have access to supported employment
services. That the field of mental health should join
the field of medicine in providing opportunities for peer support and self-help. That service recipients should play a larger
role in managing the public funding that was spent on their services and supports. And that behavioral health integration into
primary care was essential given the high morbidity and mortality of the people with
psychiatric disabilities from untreated medical conditions such as diabetes, heart disease,
respiratory diseases, among others. During these years, and up until the present
time, NIDILRR-funded research and training resulted in knowledge and knowledge translation
that was critically needed to transform the public mental health system into one that
is more integrated and effective. Some examples include NIDILRR’s emphasis on
evidence-based practice which made the field of mental health focus for the first time,
believe it or not, on service efficacy and effectiveness. NIDILRR’s focus on the integration of rehabilitation
services into the pre-existing system of psychiatric care had its impact. NIDILRR’s focus on chronic illness self-management,
peer support, and self-direction by giving people control over service delivery dollars
were all new, radical ideas in the field of psychiatric disability. And finally, NIDILRR’s focus on integrating
primary care into mental health care and rehabilitation services played a part in this transformation
of the system. At my own center, NIDILRR funding, along with
SAMHSA funds, which I’ll explain in a moment, made multiple lines of research possible. We saw for the first time that supported employment
services could be used by people with psychiatric disabilities to return to work. We showed for the first time that those people
were still working a decade after receiving supported employment services, and we recently
showed that peers in peer-run agencies could deliver evidence-based practice supported
employment. We also conducted the first randomized control
trial studies of peer-delivered recovery services, including models such as WRAP, Wellness Recovery
Action Plan, BRIDGES, and WHAM. We did the first RCT showing that people with
psychiatric disabilities could use a cash and counseling model and have control over
the funds that were spent by Medicaid on their recovery. And our most recent research has focused on
healthcare integration. We developed a weight management program for
people with psychiatric disabilities. Many of those individuals developed obesity
because of the meds they take. And we pioneered conducting community epidemiology
research using health fairs to both gather data and to screen people for co-occurring
disabilities. But NIDILRR funding has never been limited
to the production of rigorous knowledge alone. Unique among federal agencies, NIDILRR has
always put its emphasis on knowledge translation and dissemination. And this includes its insistence that its
grantees, especially its RRTCs, use the knowledge produced to make a difference. As a result of this, we created the Online
Solutions Suite, modeled shamelessly after the Microsoft Office suite, featuring seven
free tools that people can use in service delivery or on their own to pursue goals like
employment, independent living, peer-run services, you name it. Each of the solution suite products can be
downloaded for free. There’s a podcast that can be listened to
on what the tool is and how to use it, an archived training webinar that people can
listen to that is a how to, and free technical assistance with implementation from our center. Today these free tools in our solutions suite
are used by thousands of programs across the country. Another example of knowledge translation is
the use of a model developed with the help of NIDILRR funding by the Administration on
Aging. The AOA recently designated peer-led WRAP,
that Wellness Recovery Action Plan intervention I talked about, as one of ACL’s chronic disease
self-management education programs. It’s the first peer-delivered CDSME program. As a result, WRAP for Seniors was developed,
and is being rolled out at senior centers throughout Illinois with funding from ACL’s
CDSME program. This press release in early October tells
the story of how in mental health, self-help intervention has been translated into the
field of aging services. Knowledge translation is also occurring on
a global scale. In the country of Tajikistan, BRIDGES, one
of the interventions that we studied led by peers, is being taught by peers as part of
a stepped care intervention for women with depression. The success of this stepped care intervention
has led the Tajik Ministry of Health to begin planning to roll out the intervention to all
of the primary care clinics in that country which has no community-based mental health
services and also has great stigma about mental illness. And finally, in the area of health care integration,
our center’s online diabetes tool kit is used by people with co-occurring diabetes and mental
illness. Another condition that is brought on by some
of the psychiatric meds that people take. To successfully manage both conditions and
has been designated by the Agency for Healthcare Research and Quality as a quality tool. So what’s so special about NIDILRR? The agency places great importance on the
involvement of end users of research in the conduct of inquiry. And when you’re working with the end users,
you never forget why you’re doing the research, and making the research relevant. Well before it became a priority at the National
Institutes of Health, NIDILRR showed a willingness to fund so-called high risk, high payoff studies,
particularly in the area of psychiatric disability, to promote swift change because of the radical
things that were going on in needing to improve the public mental health and rehabilitation
systems. NIDILRR’s consistently been committed, as
we’ve heard from several past directors, to community-involved participatory action research,
insisting that all phases of research involve people with disabilities. And this has led its grantees to focus on
knowledge translation and science to service pathways. And finally, the agency is unique in its ability
to collaborate with other federal agencies and programs. And an example of this is NIDILRR’s collaborative
partnership with SAMHSA, the Substance Abuse and Mental Health Services Administration. Since 1978, one of the longest-running interagency
partnerships has existed between NIDILRR and the Center for Mental Health Services of SAMHSA. It’s supported four RRTCs on psychiatric disability. Two focused on adults, and two on transition-aged
youth. And there’s fifth one that isn’t supported
by SAMHSA but we�re working on that. This has enabled programs like mine to conduct
unique outcome-focused and policy-relevant research and to translate our results into
practice during this exceptional period of change in how we treat and assist people with
psychiatric disabilities. In closing, I’d like to leave you with this
thought from Albert Einstein, who cautioned that, “We cannot solve our problems with the
same thinking we used when we created them.” This epitomizes NIDILRR’s approach to developing
new scientific paradigms that address the constantly evolving nature of our society,
with its challenges and opportunities for people with disabilities, now including people
with psychiatric disabilities. Thank you. [applause]>>Ruth Brannon: So the final speaker in our
list today, I consider our clean-up batter. And it’s Dr. Gregg Vanderheiden who is a professor
in the iSchool and the director of Trace Research and Development Center at University of Maryland
College Park. He directs the Rehabilitation Engineering
Research Center on Universal Interface and Information Technology Access, and he co-directs
Raising the Floor, an international consortium of companies and organizations building the
global public inclusive infrastructure. He’s a very interesting character. And he’s there. See, he snuck right by me. Sorry.>>Gregg Vanderheiden: Yeah. The — NIDILRR as you’ve heard many times
today, is a unique organization. It’s unique in its mission. There are research organizations for science,
there’s research organizations for medicine, there’s research organizations for lots of
different things. But NIDILRR’s is, as you heard before, none
of these, it’s all of those. But its mission is focused on outcomes. Its approach is not to advance our knowledge,
it’s to advance the lives of people with disabilities, and it employs science. It employs technology. It employs policy. It employs knowledge at all levels in order
to do this, and this is really unique. It’s also unique in its follow through in
terms of the ability to take ideas and not just stop at publication but to encourage,
insist, and support, taking those ideas all the way through. We’ve seen some examples today of that, and
the difference is just astronomical in terms of when you look at the number of ideas that
come through a lot of other places and the percentage of them that get out to the final
market and into the lives of the people with disabilities. It’s just there. Now, I’m going to look at just one area of
the many, many areas; and I’m going to only look at some of the, like, 50 or something
advances that I know of during my time that have been made in this area. And NIDILRR has had a profound impact on the
area of information and communication technology access. Now, the NIDILRR’s rehabilitation engineering
center’s program was there at the beginning. As we began this area, especially ICT, in
the last 10� 20 years, it’s just massively changed� actually, 30 years, getting to
be 40 years. And it funded the creation of the first accessibility
[phonetic sp] guidelines for all of the companies that were inventing the field while they were
inventing it. Okay. So, in 1985, NIDILRR got together with the
White House; and they had a White House conference; and they brought together the IT companies
at the White House. First time these people had done it; and it
was amazing because we would be talking to them; and they would say, “People with disabilities
are using our computers? What would they use them for?” And a real, sort of, watershed moment in that
case. It then led to� from that, we went back;
and we developed a set of guidelines for computer access; and then these were first distributed
by Microsoft; and they distributed them to all of their developers. Okay. So they then later were used as a basis for
developing Microsoft’s own access guidelines. In 1986, they were used with Apple to develop
the internal guidelines and actually an accessibility scorecard for both hardware and software within
Apple computer. And then in IBM, again, we were involved in
the creation of a set of guidelines that IBM then used internally for all of its products
for making them accessible. In 1986, I was actually asked by Apple to
come back every three months; and I was allowed to go anywhere in the company and see anything
and talk to anybody� not happened today. The� and my charge by Randy Battat, who
was the head, and Alan Brightman�I want to call out, is the one who was at Apple who
made all of this happen. Randy Battat was head of product development;
and he called me in. And then I said, “Well, what’s my charge?” And he said, “Make our products accessible.” And I said, “Well, how do I do that?” And he says, “I don’t know. That’s what we brought you here for.” And I went, “Well, what do I do?” And he said, “I’ve set up appointments with
everybody� every development team at Apple. And you can go around and talk to them. If you can talk them into something, you know,
it’s� that’s what you need to do. And, so, by just going around and talking,
just giving the information in, made all of the difference; and, again, all of this made
possible by the support of Apple of NIDILRR in terms of its programs. And the result was that they built accessibility
products into their products for the first time where we had it not just as an addon
as you had with other products, but it was literally built right into their systems. And there it’s still there today, and they’ve
gone [phonetic sp] more and more, and now you’ve seen it go from the computer to the
iPhone. And if anybody has an iPhone, open it up;
and you’ll find that there’s dozens and dozens of accessibility features built into every
shipping iPhone. In 1995, Windows built their accessibility
features in. And nine of the first 10 accessibility features
that were put into 95 or nine of the 10 features that were in Windows 95 were all licensed,
royalty free from NIDILRR RERC. Okay. So we’re talking about direct impact. And, again, Microsoft is now taken those and
also expanded them tremendously. NIDILRR grantees can also help predict the
future. So, when we began in 1998, I had talked�
gone to the access board with a cardboard model. And, when I went to Microsoft, I took this
little animation; and I talked about the fact that in the future we were going to be talking
about computers and phones that were so thin that they would just fit into your pocket. And I even guessed forward and backwardmounting
cameras� got the button number wrong. And then, 10 years later, we had the iPhone. And we had exactly that. And, now, 20 years later, we actually have
Samsung coming out with something that looks amazingly like it. Now, why is this important? Well, this is important because between 1998
and 2008, we created most of the accessibility guidelines that we’re now using today. And we were able to create them so that they
worked after 2008 with the iPhone coming out. And they work today, as well. And they’re still the basis for the accessibility
rules. And that is because of NIDILRR’s support. That’s because of longterm NIDILRR’s support. That’s dedication of NIDILRR. It’s all the way back from� they drove the
White House meeting all the way through to now. Another example, NIDILRR funded research for
developing cross disability access. When you go up to a kiosk, you have a much
different problem than when you try to make a computer accessible. When you walk to a kiosk, it’s got to work
for all the disabilities. And it’s got to work for disabilities who’ve
never seen it before because the first time they walk up. So how do you create something that worked
for somebody who’s blind that you don’t have to go to a course and be trained in how to
use it? And it worked for somebody with low vision
and for somebody who has trouble reading and for somebody who has reach [phonetic sp]. And, again, with NIDILRR research, it evolved
these cross disability called EZ Access and the development of key pads; and now they
can be found on information transaction kiosk and systems across the country. We see them in voting systems. This is the United States postal systems. There’s, like, 20,000 of these around. You can see the control. Here’s the paging system. And, again, you could see them. Here is the Amtrak ticketing machines. And, again, you have a system� looks like
the slides have decided to start advancing themselves� so you can see it here. These are the passport security. Everybody can skip the passport line at the
airport and go forward and just use the kiosk in order to get access, right? But now people who are blind can also do it. Again, they moved the spot on me. So it’s a little off to the side. But you can see it there. And I want to give a shoutout to Bill Peterson
who’s sitting front and center in the back or back and center in the back who’s with
Homeland Security, and he is singularly responsible for the Homeland Security kiosk all being
accessible. So raise your hand. Bill Peterson is also a product of NIDILRR. Okay. He� funding before, and then he came onto
NIDILRR. And, so, he was NIDILRR. He was our program officer and drove a lot
of the research and was program officer during some of the many of the developments you see
here today: IBM, and here we see one, again, accessibility as we’re going forward. Now, NIDILRR was there also when the web was
still a toddler. Okay. So� and They were funding programs to build
accessibility into the web from the start. So, before we were all using it, NIDILRR was
funding and bringing that forward. So these are the first web accessibility guidelines. This is the World Wide Web conference No.�2. Okay. And these were� out of that came a meeting
and then guidelines that were funded by NIDILRR. Okay. So these were the accessibility guidelines. These accessibility guidelines then evolved
over the next four years. And they became the first draft of the web
content accessibility guidelines: 1.0 and 2.0 and 2.1 that are, again, the basis for
all of our web accessibility. And these were all done by the W3C Web Accessibility
Initiative which also was funded by NIDILRR and would not have been able to go forward
and all of the incredible work that’s happened in the World Wide Web because of NIDILRR funding. And they actually had a coalition of funding,
and people dropped off, and NIDILRR continued because after a while it was something new
in the beginning; and then it wasn’t new. And, so, other funding agencies would step
back. NIDILRR continued funding, and that’s why
we have it. That’s why it’s progressing today. NIDILRR’s about solving problems. NIDILRR doesn’t create regulations; but it
does create practical, commercially feasible solutions that companies can use to meet the
accessibility requirements. And that’s the only reason you can get the
requirements through. You can’t� when you go to try and make regulations
about accessibility, if industry says “show me” and you can’t show them, doesn’t happen. Okay. And we have many examples, and I can tell
you lots of war stories; but I won’t do it here, and a lot of them are very interesting
and entertaining. Many of the techniques and technologies developed
by NIDILRR grantees also were done before the regulations came� so making something
that’s so practical that industry will do it before it is required to. One interesting story is when I was working
with Apple, we got this feature called sticky key built into Apple where you could use it
with just one hand. And it was put in, and three weeks later I
got a call from Chris Espinosa who’s the vice president for software. And I’ve talked to him, but he hasn’t called
me. Okay. So he calls me on the phone; and I said, “Yes?” And he said, “That feature we can use it with
one hand,” he says, “how do you turn that on?” And I said, “Well, it’s right there in the
manual. It’s even in large print.” And he says� he said, “I’m in software engineering. We don’t have manuals.” So I said, “Oh, just tap on the shift key
five times. And he goes� he goes, “Oh, great.” And I said, “Well, why do you ask?” And he said, “I was in trans [phonetic sp]
last week, and I slipped, and I fell, and then I shattered my elbow; and my left arm
is now taped to my chest, and I can’t work. So we all acquired disabilities at various
times, and Chris got this built into the operating system just in time for needing it himself. They’re also being used to improve the usability
of their products by all users, and that’s also one of the great lessons. NIDILRR research enables people of all ages
to access what is becoming increasingly complex information technologies. How many people here have trouble using their
computer, their thermostat, their iPhone, their Android phone? And the worst part is that every time they
update them we start all over again. Well, good luck as you get older and you have
trouble learning new things. It doesn’t get easier. But this includes people who acquired disabilities
at birth or through disease or accident, our senior citizens, our veterans; and it allows
them to point it out to work, to participate, and to live more independently. Now, NIDILRR funding� I’m going to end with
this� is on the cusp of a revolutionary, new accessibility breakthrough that can make
computers dramatically easier for people to use or who are facing barriers to computer
use through a wide range of things not just disability but literacy� digital literacy,
sitting down to a computer that’s not in their native language and trying to both decode
the complexity of the computer and do it in a foreign language or age. And I’m really focusing on the last one, you
know, making sure that we do things that work well for people who are getting older purely
for selfinterest myself. But what we’re talking about is the ability
for somebody to sit down to a computer and have that computer instantly change into a
form that they can use. We’re talking about somebody instead of when
they show up at school they find that there’s a computer in the lab in one room that they
can go use that they could, on the first day, go in and sit down at any of the 1,200 computers
at the community college, and the AT they need would instantly show up on that computer
and be configured to be identical to their computer at home. And, so, for the first time at school, at
work, wherever they go, they can sit down and have their system. When they go to the ACT or GRE test or whatever,
and they tell you, you can’t bring your assistive technology with you because you might have
answers in it, but we will have [phonetic sp] a computer there. And we will put some software on there like
yours. And I go, “Do you configure it just like theirs?” And they go, “Well, no. But it’s the same program.” And I say, “Good. So next time you take a test, you use my glasses
instead of your glasses and take the test. I’m sure they would be better than not wearing
glasses but not really a fair test.”� and, so, the ability to go in and sit down and
have the AT, clean AT, show up that’s configured identical to yours. Okay. So these are the kinds of things that NIDILRR
does. And this is just one area that NIDILRR’s impacted
and impacting today, just one area where they’re making sure that everybody in America can
access and participate in this amazing and taskchanging world. None of what I’ve shown you� and they said
there’s like 50, and this is just some of them� would have happened without NIDILRR’s
mission, without its longterm commitment to ideas, and without its followthrough and support
of ideas that go past research and over what NSF calls “the valley of death.” That’s after you finished the research and
before it actually is able to be picked up by industry and into practice. So here we are to celebrate 40 years of NIDILRR,
and to kick off the next 40 years. Thank you for giving me the chance to thank
all of you at NIDILRR and who support NIDILRR and ACL and DHHS and from all of us and all
of those of us who couldn’t be here today. We want to say thank you to all of you and
congratulations on a job well done. [inaudible]>>Mary Lazare: Okay. So we’re just adapting to change and the time. As you know, somebody came behind me and said,
“We’re changing.” So I’m catching up with the change. And, so, what we’re going to do now is have
the force� quote/unquote “the force.” Again, share with you a brief� you don’t
like that? You only have to listen to it a few more days�
the force be� that’s been with us, let’s put it that way, so Director Ruth Brannon
will share a brief tidbits of NIDILRR’s longrange plan. Thank you, Ruth.>>Ruth Brannon: So I have to get this straight. First of all, I prepared a way lengthy presentation
without thinking which I should’ve done to investigate what other people were talking
about. And, through the course of the day, at least
half of what I was going to talk about has already been talked about. And I did not know that I was supposed to
be talking about the longrange plan. So I’m going to, basically, use my executive
capabilities here. And I’m going to talk about whatever I want
to. And I have� I have several things that I
want to talk about. And it’ll be a little jumpy because I do have
this whole tome [phonetic sp], and I’m going to jump around in it. So I’m going to start with things that we
talked about this morning and talk to Giannini and others mentioned, I think, which is that,
you know, NIDILRR came into being 1978; but, in fact, NIDILRR’s work began a long time
ago; and it really goes back to the 1930s and worked its way up to 1954� sort of,
the evolution of technology. And I’ve a lot of friends from the Rehab Services
Administration, and they remind me frequently that when we talk about our [unintelligible]
entry [phonetic sp] programs and our engineering programs that those things existed in the
Rehabilitation Services Administration back 20 and 30 years before there was a NIDILRR. So I actually have colleagues who are still
working who will come and say you talk about those sinners [phonetic sp] like they’re yours,
they’re mine, or they were mine. And I think that’s an illustration of the
need that existed in our country for accessible technology for people with disabilities and
it� all of that was brought over into the NIDILRR portfolio when NIDILRR� well, when
NIHR came into existence and then NIDILRR. So I was going to talk about each of those,
sort of, stages of NIDILRR’s existence. But I think I’m going to say something about
the review of disability and rehabilitation research that was made by the national committees
on the external evaluation of NIDILRR and its grantees. And it described NIDILRR as the principal
federal agency supporting applied research training and development to improve the lives
of disabilities. Now, some of my colleagues are here from other
agencies; and they work on these topics. But, I think, the point that people are making
is that we encapsulate the whole� the whole process, the whole set of needs as opposed
to being focused on medicine or being focused on rehabilitation sciences; and I’m going
to talk a little bit more about that. But I am going to� and I wouldn’t do this
if I weren’t retiring in a couple of days� but I am going to say that it’s really an
important thing to know� and I went back, and I looked when preparing these set of notes�
NIDILRR got as high as 110 million dollars, I think, in 2001 and 2002. That’s the most money that NIDILRR has ever
gotten. Right now we’re around, I think, 103; and
we don’t really know what our budget will be. So the agency in this country that is funding
research to improve the lives of over 50 million people with disabilities is doing that with
a budget that has stayed for two decades of around 100 million dollars. And that’s important not just because of the
money and what we could do with money. And somebody up here said today, “I would
double it.” I would do a whole lot more than double it. But let’s just be really clear, we have so
many good researchers now; and we’ve helped bring them up. They learn through our funding, and they’ve
proliferated. And because of the training we do, we have
an incredible number of young researchers all of whose energy and brain power liked
to be devoting to the cause of new products and new tools and new interventions for people
with disabilities. So, as I move forward, I did actually go through
all the IOM studies. So I was going to quote to you what all the
been [phonetic sp] major IOM institute on medicine analyses of disability, some about
NIDILRR and some not. But I thought� I will mention here the future
of disability in America in 2007 because that particularly interested me because it described
sort of an evolution of thought about disability. It said disability is no longer and no longer
means a condition that belongs to the body. It’s not just about the body. It’s about the interaction. It’s, rather, a product of the self, society,
body, and the other interactions from political economies to personal commitments that happen
to people and people with disabilities. So you don’t� can’t just think about the
injury or the aftermath. It’s the whole person that’s involved in living
with a disability; and it actually then involves all their families and friends, as well. So I’ve often described NIDILRR as the little
engine that could, and somebody else said that here, I think. I do that because of the budget. And I do that because with that money, at
any one time, we’re likely funding over 200 projects. I just looked at the 2018 budget, again, the
other day; and I think we funded 64 new projects and about 160something continuation projects. So the money that we have is spread over a
vast array of topics. And we� and about 10 years ago decided that
we were going to organize those topics so we could communicate more clearly to people
about what we do. So we call them outcome domains. We have three outcome domains: The overarching
one� and this is actually an evolution of our relationship with ACL; but it had begun
before that. The overarching outcome that we are focused
on is the ability of people to live and participate in their community. It’s not about fixing them it’s about living
in the community. And, to do that, we do research in that area;
but we also do research and built on our, you know, almost 50year history. Now, we do research in area of health and
function. And some of that is about medicine, but most
of it is actually not. It’s about living with disability and the
community. And a major outcome area, the other� the
third major outcome area for us is employment because, in this country, it’s critical to
be able to work and to facilitate ways that people with disabilities can work. And I’ve seen Gregg Vanderheiden’s work that
he was talking about and a lot of it is being tested in employment settings where people
can come in and very easily do what they need to do because the versatility of the product
that’s being developed. We’re living in a new world. We’re on the edge of a lot of changes. But we have to be able to deploy what we invent
so that people can actually use it. So I’m going to skip around. So I was going to talk a little bit� and
somebody wave. You wave because I’ll go on forever, and I
don’t want�to. Kristi’s got important things to talk about�
but I was going to talk about some of the kinds of changes we’ve done at NIDILRR over
the decades. I was a NIDILRR grantee for a decade. And then I came to work, and I’ve worked there
for 21 years. Kate Seelman kept following me around. And she’d say, “When are you going to come
to work for me?” And one day I did, and it changed my life. So, in terms of structural changes, because
we’re not we are what we’ve always been, but we’ve evolved, we have become a much more
focused professional organization. And I won’t cry. So our staffing is� the numbers of people
in our staff have not really increased very much. But the quality of these people is just amazing. And we have now a number of highly trained
PhDlevel people. Majority of them were not recruited by us. They came and said, “We want to work with
you.” They knew about NIDILRR. They had interest in disability. They had backgrounds in disability. One of my favorite stories� and now I am
going off the tracks a little� is my colleague and friend, Leslie Caplan, worked for a whole
career at the NIH. And she retired from that. And she came, and somebody sent her to me. I didn’t know her. And she said, “Well, if I come to work here,
what would I do?” And I said, “You know, I was giving that some
thought. Here, take this.” And I had a tome of stuff on employment research. Leslie went away. About five or six weeks later she came back. She said, “Ruth, there’s no research in there. There’s no science. And I said, “You got it. That’s your job.” And I cannot tell you what that woman has
done to create a scientific, methodologically sound approach to looking at employment and
employment outcomes. It has changed a lot of things. So I want to say we have increased linkages
[phonetic sp] with colleagues that we didn’t have before within ACL and across the federal
government. Leslie� well, Leslie didn’t. But someone talked about the� Judith talked
about the [unintelligible] that goes back for many, many years. I think he left, but Mohammed Yousuf was here. We’re working very closely with Mohammed on
Department of Transportation Accessible Transportation Technologies Research Institute. And we’re doing that because we see this as
a major change in our world. And people with disabilities are going to
be affected one way or the other. Either we’re going to be incorporated in it
so that what we need to have happen happens or things start to get manufactured, and we’re
going to be left standing over here and not able to actually take advantage of what’s
happening. Whether it’s automated vehicles or whether
it’s going to be from Mohammed’s interests is in, you know, the beginning and the end
of the trail where you may be using the rail, you may be using the subway, you may be using
the bus, you may be using something else; but it’s all going to be automated in ways
that we don’t want the 50 million people with disabilities to be left out. She’s not here today, but I have to talk about
a young woman we hired a couple of years ago, Sarah Ruiz. Sarah is an aging expert, and that fits very
neatly with our work at ACL, which has–is she here? Where is she? Oh my god. There she is. She’s a brand-new mother, and she’s a superstar,
let me just say. And Sarah is linking us up, not just–well,
and we’ll have to give kudos to Margaret Campbell because Margaret Campbell who is here started
us on this path, and she actually recruited Sarah to replace her, and we were really looking
at the impact of aging on people with disabilities and it’s, you know, some of the same problems
if you don’t have a disability, but for people with disabilities there are all kinds of issues
that we need to address, and we are working closely within ACL. [laughs] Okay, so I’m going to go faster. [laughter] So, I wanted to say that we’ve done a lot
of work. I’ve particularly done–it’s been something
I’ve really worked on and grants making and grants management what we’ve been trying to
do is get out of the okay corral. I was really concerned when I first came to
NIDILRR about how this person did it this way that person did it that way and we were–they
were all good people, but they were all over the map. And, so, we have standardized, and Phil Beatty
is here. Phil is my deputy. He is just outstanding, and he’s been my partner
in this, and so we have come up with ways that we do–select peer reviewers, assign
peer reviewer criteria, oversee peer reviews. We have two staff people now for each panel,
one to manage the meeting and the other to be looking at what is being written, and does
it make sense, and how do we do it. We fund in rank order. I won’t tell you the stories, but, you know,
when you’ve got really excellent priorities, and somebody is like point five below somebody
else, and you still fund in rank order because, as soon as you start picking and choosing,
you undermine the integrity, and people will try to get you to do something different. We have very extensive now, and completely
by the book, annual performance reviews. These things really matter because everybody
at NIDILRR now knows what it is they’re supposed to do. I want to say–it happened before we came
to ACL. It probably made ACL work for us in a lot
of ways. It’s this whole issue of people with disability
living in the community and the lack of supports, so we are focusing on generating knowledge
from research that will inform the development of strategies, tools, and treatments that
will help people live in the community, and I think that’s a very exciting and wonderful
thing, and I actually have tons more, but I think, in the spirit of giving my colleague
and friend, Kristi Hill, time, I’m going to call her up and maybe we’ll meet somewhere
else, and I’ll finish the story. [laughter] [applause]>>Kristi Hill: Okay, good afternoon again,
everyone. I know now that Ruth has rubbed off on me
way more than I ever would have expected because much of what she said is what I was going
to say, [laughs] which is a good thing. It means we’re melding. We’re okay, and most of it bears repeating
anyway. So, anyway, it’s my pleasure to be here today
to talk a little bit about where I see NIDILRR heading. As disclaimers go, I should say that I have
no crystal ball. I can’t see into the future. I have no insight into what our appropriations
and budget will be for the coming years or specifics about the actual program priorities,
but, nevertheless, I am hopeful that what lies ahead–for what lies ahead and enthusiastic
about sharing in the leadership that will guide NIDILRR into the next few decades and
beyond. One of my favorite poets said once that “the
desire to reach the stars is ambitious, but the desire to reach hearts and minds is wise
and most possible.” While not directly our intent, our work at
NIDILRR has undoubtedly influenced hearts and minds. It’s changed people’s thinking about what
is possible and what it means to really have a good quality of life. NIDILRR’s mission dictates that we generate
new knowledge and promote its effective use. It also dictates that we expand society’s
capacity. Keying in on expanding–on that phrase, expanding
society’s capacity, these three words could very easily be overlooked as part of our work,
but it has not been. Society, humanity, people who have a stake
in what we accomplish have seen and felt NIDILRR’s presence and impact over the last forty years,
and today you all have heard evidence of that in the presentations, particularly the “if
not for NIDILRR” accounts that are such an instrumental part of our story. Our science has yielded real and tangible
impacts and outcomes for people with disabilities and their families. It’s not a stretch at all to say that the
preponderance of people in the communities all across America are primed and ready to
provide even greater–and embrace even greater support and embrace our research as we move
into the future. So, as we think about the directions we’re
going to go and move in as an organization, I first wanted to readily acknowledge the
solid footing and foundation that we have–that has been laid down over the last forty years
and to offer deference, the deference that’s due to those who have gotten us to this point. As we look to the future, the change and the
focus that we see will be both a thoughtful blend of evolutionary and revolutionary movement. To me, that looks like methodical, measured
action towards alignment and optimization of the existing NIDILRR research infrastructure
and enterprise, and it also looks like radical thinking and progressive innovation and cutting-edge
high risk, high reward research, all while remaining considerate of the enormous breadth
of our mission. We recognize that advances in science and
technology over the last few years or decades have increasingly opened up new avenues for
research and produced new research designs, methodological and analytical options and
models that have the potential to yield increased productivity and progress towards desired
outcomes. Newly developed tools and statistical software
platforms allow for larger scale data capture and rapid analysis of these large data sets. We have so, so much more to work with towards
addressing our key research questions. Advances in allowing research–are allowing
researchers to engage and follow greater numbers of study participants in a more efficient
manner. Advances are also presenting enhanced opportunities
for coordination and collaboration and partnership not only locally or regionally but nationally
and internationally. I can assure you that NIDILRR stands ready
to exploit such opportunities and options and will use those opportunities to drive
the disability and rehabilitation research field forward. NIDILRR’s research will follow well established
areas of study and continue to push our researchers to move their work reasonably through the
stages of research and development. We will initiate new lines of research in
emerging and interesting areas and dive deeper into areas that are already on our radar,
things like automation, robotics, advanced orthotics and prosthetics. You’ve heard about them already today. We’ll be thinking more holistically and continue
our work around serious mental illness and the way that we support individuals with psychiatric
disabilities and their families in the community and in the workplace and in their schools. We’ll hold fast to our capacity-building work,
so that we have–the research–that we have the research bench strength and expertise
needed as we move into the future. We will strive to better understand and assess
the impact of public policy and the implications for shifting and changing policies in our
communities. We’ll work to push the boundaries of the science
of knowledge translation and tackle issues related to marketing and commercialized ability
of assistive technologies. A lot of this sounds familiar and it probably
should. Much of the research themes–many of the research
themes and topics of interest remain relatively static, but the research questions and the
strategies and tactics we must use change with the times. We want to stay ahead of the curve and not
behind it. I’ve always said that NIDILRR is a small but
mighty organization, and I think you’ve heard that more than once today. But the linkages that we have to the field
and our valued partners render us exponentially more successful at doing our jobs. As a passive actor, I’m eager to see how NIDILRR’s
progress in its funded research and development efforts will move the field. As an engaged leader, I know that I’m–that
the impassioned work of NIDILRR and its stake holder networks can drive–can and will drive
the field of disability and rehabilitation forward in the decades to come. NIDILRR has always ardently pursued partnership
opportunities and will continue to do that as we move forward. Our placement in the Department of Health
and Human Services and particularly in ACL have given NIDILRR proximity and visibility
and credibility that can only serve to enhance our prospects for connectedness, collaboration,
and alignment. We have already established partnerships with
the HHS Office for Global Affairs and in the years to come, and especially under Dr. Jaeger’s
leadership, we’re working towards reviving the international programs and the efforts
that we started many years ago, but when it’s all said and done NIDILRR’s future is as much
about people as it is about anything else. It’s about the stake holders who as a collective
constitute the fabric of the disability and rehabilitation community. That includes the NIDILRR team who diligently
and systematically plan and administer rigorous and relevant programs. In my opinion, as you’ve heard before, they
are indeed the best and brightest and most passionate team and certainly the most passionate
that I’ve ever worked with. These are researchers. They’re teachers. They’re problem solvers. They’re thought leaders and technical experts. They write. They speak publicly. They serve as mediators and counselors, and
they’re master strategists and tacticians. Many of you don’t know them personally, but
I do, and I know, and I’ve come to understand that these are also people who are living
with disability, who are parents of children with disabilities, and they’re children raised
by parents with disabilities. They’re primary care givers of siblings and
close family members with disability, and spouses of people with disability. They work what they live, and they live what
they work, and NIDILRR benefits every day from their personal passion and confidence
and integrity. The collective also includes our ACL colleagues. They have embraced us. They routinely seek us out, and they bring
to us relevant research inquiry that comes from their decades of experience and connections
in the aging and disability networks, their advocacy networks, their state and local governments
that they serve. This collective also includes our federal
partners who are also in the trenches with us every day. They reach out to what often feels like siloed
work units, and they look for opportunities to collaborate in unique and varied ways to
advance our shared interests. This fabric includes our researchers. These are the researchers who spent their
life’s work focused on advancing the science in their respective fields. These are the professionals and our eyes and
ears in the field. They engage each other and people with disabilities
and their families on a daily basis. They see and understand the impact of individuals–of
individual challenges and systems level barriers. We depend on them. We actively seek their input as we work to
better understand the problems, identify the gaps, and formulate the research ideas that
get at the real-world problems. Ultimately, that fabric includes our consumers. These are the people with disabilities and
their families and circles of support. They have a lived disability experience, and
they simply want to live their best life, to make their own choices, to manage their
affairs, and have real opportunities to work, live, learn, and play in integrated and inclusive
settings in the community. NIDILRR will continue to engage our consumer
stake holders directly so that we can maintain a genuine relationship and appreciation for
the needs of the people that we serve. So, in the grand scheme of things, it really
is about people. It’s just that simple, and it’s just that
complex. In the years ahead, NIDILRR will carry forward
our commitment to continue to listen and engage all of those stake holders–all of those who
are so well positioned to support us in accomplishing our long-standing mission. The world around us is rapidly changing. Amid that change, I am hopefully optimistic
that NIDILRR and its community of stake holders will be steadfast, unapologetic, unencumbered
by conventional wisdom, and out in front leading the way. Today, I join all of you in recognizing the
work and congratulating all the embodied NIDILRR organization for a stellar forty years, and
I offer well wishes as we lead into the next forty years. Thank you. [applause]>>Lance Robertson: Thank you, Kristi. Thank you, Ruth. Well, folks, we have reached the end of our
program, and the last person that we are going to hear from is NIDILRR’s current director,
Dr. Bob Jaeger, who I don’t see. Is Bob around? Oh, he’s doing a Matt Damon Grammy entrance
or something–is that–cue the music. No, I’m just kidding. Let me tell you about Bob, for those of you
who don’t know Dr. Jaeger. Dr. Jaeger’s research experience spans more
than four decades and much of it’s been focused on disability and rehabilitation research. He came to ACL in December of last year, following
ten years with the Office of Research and Development at the Department of Veterans’
Affairs. At the VA, he served as scientific program
manager and then the director of post deployment health research. Prior to his time with the VA, he was the
program director for the research to aid persons with disabilities program at NSF. He also served as an adjunct research biomedical
engineer with the rehabilitation medicine department at NIH’s clinical center, and this
is not Bob’s first time with NIDILRR. In 1987, he received the Switzer fellowship
and then, in 1997, he actually started his civil service with NIDRR, and from 2000 to
2006 he served as NIDRR’s director of interagency and international affairs, and, in that role,
he also served as the executive secretary of the Interagency Committee on Disability
Research. Dr. Jaeger. [applause]>>Robert Jaeger: Oh, okay. Let’s see here. See if I can–I always have trouble with these
things. Oh, oh, we’re having–oh, oh–they told me
I had to–oh okay, wait a minute, there we go. Okay. Well, my kids always said, “Dad, you talk
too much,” and today I’m going to prove them wrong. [laughs] [laughter] Okay, well, I took this picture over in the
Switzer building. We had hoped to move the bust over here, but,
we found out from GSA, it would cost over $10,000 with insurance and everything, so
you’ve got to be satisfied with the picture. Now, when I was taking this picture, one of
the security guards says, “Hey, hey, hey, what are you doing over there? That’s my girlfriend.” And I said, “Well, how about that? She’s my girlfriend, too.” Okay, let’s see. Because we’re running late on time, I can’t
name everyone that helped out with this, so I’m going to name a few and those that I didn’t
mention come to my office and yell at me. First, there is Raina McDowell, over here,
Kristi Hill, of course. They did a tremendous amount of stuff, and
Christine Phillips in ACL did a lot, too, and also the HHS event staff. They were so helpful when we were getting
the physical layout and everything, and I also want to give a shout out to New Editions
Consulting who is at the registration table and helped with all the other logistics. The first thing I want to do is thank the
secretary for coming today. He has got so much on his plate, but his presence
here at this event shows that he knows about us, and he recognizes our good work, and when
you get the top person, that says a lot about his respect for us, and as I’ve interacted
with him, not a whole lot, but I heard him speak and what not, there was kind of an osmotic
process going on every time I do anything, watch his talks or attend–and these are my
words not his. It’s not enough that you just do your job. You need to do it with compassion, concern,
understanding, and respect, and you know what? I found out, the NIDILRR staff already know
that. So, well, oh, now, I could go on for hours
about Ruth. She did not cry enough in my opinion, during
her talk here, and so I’m going to try to make up for that at the end of my talk. Let’s see here. Okay, so I’m going to steal a line from Dr.
Giannini yesterday at Ruth’s party, with all the comments on the excellent staff she helped
build up. NIDRR is the house that Ruth built, forget
about Yankee stadium, okay? Now, I’m going to ask my colleague who joined
me up here–we have another retirement this year, Joyce Caldwell, and Joyce is the longest
serving NIDRR–NIDILRR employee, and she’s done an outstanding job. Ruth kind of was more outward facing, and
Joyce was kind of more inward facing, and I’ve asked Joe DePhillips, the nice colleague
and friend, to come up here and speak from the heart about Joyce’s retirement because
I did not want her to go unrecognized at–you want to come up or you want to speak from
the table? Okay, come on up, Joe. Be careful. There’s a mat here.>>Joseph DePhillips: Thank you, Bob.>>Robert Jaegar: Okay, sure.>>Joseph DePhillips: Thanks a lot. Thank you. Thanks, everyone. There’s a lot of takeaways to come away–whoops–lot
of takeaways today. Ruth talked about, not only hopefully doubling
our budget, by maybe more, and all the research presentations, everything was great. I’m going to add one more slight takeaway,
and this is difficult for me. Joyce Caldwell, as Bob said, was in the government
over fifty years and it–one of the longest standing NIDILRR employees. In early August, she retired. Unfortunately, she’s incurred many health
problems, and I ask you today when you leave to please Joyce in your thoughts. Joyce’s career was two-fold. She was a outstanding–she is or was a outstanding
project officer, and she also had many union responsibilities. In terms of her work as a project officer,
she had a vast portfolio, but one of her main projects was the University of Montana RTC
on rural rehabilitation research. The PI is Craig Ravesloot. His team includes Catherine Ipsen, and I believe
Lillie Greimen is here today. Lillie–I think so. Thank you, and they sent in a most complimentary
note about Joyce, and I’ll paraphrase it. Essentially, they said what an ardent supporter
she is of the research. She worked tirelessly to include the entire
team, whether it was a visit to Missoula or if the team came to D.C. and also, she just
worked tirelessly to include individuals with disabilities in rural research that was a
tremendous passion for Joyce. One little side note. Sometimes I feel like I have an earpiece in
my ear with Joyce because she was so private. She would probably say, “Get off that stage. I don’t want any kind of a celebration, or
I don’t anyone to hear about my [unintelligible].” But I think she would excuse us for today,
and, in terms of her union business, she worked to strengthen the labor management partnership. If anyone was ever treated or she felt was
treated in a inequitable manner, she’d do everything to right the wrong, and she was
just an outstanding person, and those of my colleagues and my fellow workers who knew
Joyce well like I did, I think we all leave here today we’re much richer for having known
Joyce, and I’d appreciate it again if you would remember her in your thoughts. Thank you. [applause]>>Robert Jaegar: Thanks, Joe.>>Joseph DePhillips: Sure, thanks.>>Robert Jaeger: Thanks, Joe.>>Joseph DePhillips: Thank you.>>Robert Jaeger: All right, thanks, Joe. All right, thanks to Joe for those words. Now we had a little group photo. That will be up on the web sometime. Now this is a slide I bet everyone in this
room is dreading, and I could invite Dick Neely up here, and he could keep us here till
midnight, but I was at a presentation by Dr. Ben Carson recently, and I’m going to paraphrase
some of the thoughts that he shared. We’ve heard a lot of use of the word ‘independent,’
independence,’ and when our first-born daughter came into the world, and we would try to help
her with things, she would say, “Self can.” And then the first granddaughter, “I do it.” And the second granddaughter, “I do it myself.” So, I want to go back, forget about the statues,
I want to go back to the document that Dr. Carson referred to. One quick thing, even I was reading more about
the declaration, and, apparently in the final draft, the copyiest changed “inalienable rights”
to “unalienable rights,” so even then they had problems with autocorrect. Okay. [laughter] So, poor Thomas Jefferson. So, I want to go back to the words–The creator,
when we were created, endowed us with inalienable or unalienable rights, and that kind of forms
the basis of my concluding remarks. When I was created, I didn’t just get created
and let it go at that, in addition to creating me, the creator endowed me with rights, but
I didn’t know, and I was pretty far into elementary school before I learned about what these rights
were, so I’m thankful every day that our government has the solid rock of these endowed rights
that we’re built on, and it’s really a tragedy that these rights are not self-evident to
so many people and so many governments in the world today. Now, early in my academic career I attended
a meeting of residents in San Diego. Dr. Giannini was on the program. After her talk, I was so inspired that I decided
that rehab engineering would be for me. She set my feet on that path and I’ve never
looked back. So, let’s go back to the unalienable rights,
and let’s see if my little prop comic thing is here. Okay. I think that maybe some of the older folks
here realize that that’s an ADA stick, so, when I see people who have disabilities, I
realize that they also have unalienable rights, and when they can’t exercise these rights,
that upsets me. It’s not right. That’s what my career is all about and here
am I today before you talking to publicly reaffirm my commitment as director of NIDILRR,
so here’s where I’m going to lose it. One more comment before I close. In Sunday school, I learned that we all have
a guardian angel. I found out later in life that I have a fairy
godmother. She’s not a fairytale. She’s real, and she’s right here with us today. Thank you, Dr. Gianniani. [applause]>>Lance Robertson: Thank you, Dr. Jaeger. We appreciate you. Well, thank you for spending a Thursday afternoon
and I mean every minute of it, [laughter] with us to celebrate the fortieth anniversary
of NIDILRR. I hope you have found it to be incredibly
informative, certainly rich and rewarding. I want to thank everyone who participated. We had a number of people who joined us on
this stage and shared some insights. As is often the case, if we could spare more
time, then we would have had, I think, a lot more to share. So, Ruth, and so many others–I know we apologize
that sometimes that stuff gets shortened down, and we’re only twenty-five minutes behind
schedule right now, so that’s really not horrible, but, at the same time, there was just so much
to celebrate. My suspicion is that, at the fiftieth, you’d
better block off a week. [laughter] Because we barely–well, we really didn’t
even successfully put the fortieth celebration into an afternoon, but anyway it’s been delightful,
and we want to thank again everyone for their time. A reminder, a couple reminders, the posters
are going to be up until 6:00 pm, so if you want to–Bob, yeah?>>Robert Jaeger: Can you please, please,
move the slide? I got too emotional.>>Lance Robertson: Oh, there we go. Okay. [laughs] [laughter] Oh, one more? What are we in for here? [laughter] That’s it right there?>>Robert Jaeger: Yup. Lance Robertson
Okay, so we want to remind everybody of the happy hour. Okay, great, all right.>>Robert Jaeger: It’s not the NIDILRR/ACL
event.>>Lance Robertson: Okay, all right, I will
reaffirm that here in a moment, but, again, the posters will be up until 6:00 p.m. You’re welcome to certainly take a good look
at that wonderful information. Also, you’re welcome to submit questions and
comments via our website, and I don’t know if that was on one of the slides or not.>>Female Speaker: It’s on the agenda.>>Lance Robertson: It’s on the agenda, so
it’s on your printed document that you have with you. It’s simple. It’s We are going to also try to work on a website
that will be up and available very soon that will showcase the posters, some of the feedback
based on questions and comments, and then other memorabilia as well, and again that
is coming soon. So, behind me and in front of you is the announcement
that Dr. Jaeger wanted to leave us with, and that is the happy hour to celebrate the fortieth,
and you have the information up there. We’ll leave it up there, so with that again
thank you so much for your time. It’s been an honor to spend Thursday afternoon
with you, and I wish you safe travels. Thank you. [applause]>>Robert Jaeger: And I’ve been–I love it
up here at the mic. I’ve been asked to ask all NIDILRR staff who
are here to give us some assistance with the posters coming down at 6:00. Okay? If you can. Thank you.>>Female Speaker: Produced by the U.S. Department
of Health and Human Services at tax payer expense.

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