Research and Training Center on Independent Living
This document is dedicated to the leaders, consumers, colleagues, and fallen heroes who we have contributed unselfishly to the independent living (IL) knowledge base and to build the formation and support of the RTC/IL.
The Research and Training Center on Independent Living
Historical Overview: A Work in Progress
By Jim Budde
Founding
of the RTC/IL
The
Research and Training Center on Independent Living (RTC/IL) with its more than 30-year history of productive research, comprehensive training, and innovative
dissemination of knowledge, began with the quest to provide a home for a
21-year-old woman with quadriplegia. At that time, a planning group
formed, including Roger Williams, Gary Condra, Cal Broten, Judy Bachelder,
Franklin Shontz, and myself, unaware of an independent living (IL) model
as we know it today. We struggled and failed to come up with a solution
to our quest. Then Dick Royce, a graduate student working with us, discovered
that the Department of Education under the Rehabilitation Services Administration
had established three demonstration projects for independent living centers
(ILC) in Houston, Boston, and Berkeley .
I decided to visit the ILC in Berkeley and, to my excitement, found it was
an effective storefront operation primarily operated by individuals with
severe disabilities. Their model was one that I believed would make a major
impact on the world—and it has. This model contained three interrelated
components. First,
the services were what I later termed “undependency-creating” services.
The services were all designed to help individuals become independent rather
than dependent. For example, individuals were enabled to obtain their own
home through accommodations, supports, and entitled benefits rather than
being placed in a group home.
Second, the environment was viewed as the first obstruction to independence. At
the time, the individual with the disability was rated by what the person
could and could not do rather than the restriction of the environment. For
example, an individual might be rated as not being eligible for educational
benefits because they could not attend classes in a wheelchair. The ILC
service would be one of advocating for a ramp or elevator that would make
educational access possible.
The third, and what I believe to be the most important, was consumer control. It was based on the concept that individuals with disabilities were to be treated as consumers of services. In other words, they could select services and participate in the process. Consumer control is also based on the concept that individuals with disabilities controlled their own lives. Early research reviews illustrated that when individuals cannot control their lives they become resentful, devalue what others force them to participate in, and even give up control after constantly being forced to make decisions that they do not value. The cornerstone and success of our country is individual freedom and independence; individuals with disabilities have the same rights and are encouraged and sometimes forced to control their own destiny.
Back in Lawrence, I reported my experience to the enthused planning group. We then created the model for what we decided to call Independence, Incorporated, which was launched with concession stand profits and Kansas Rehabilitation Services funding. That same year, in 1979, a Request for Proposal for a Rehabilitation Research and Training Center (RRTC) on IL became available through the National Institute on Handicapped Research, which later became the National Institute on Disability and Rehabilitation Research (NIDRR). Howard Moses, who had been recently appointed to the new, small Independent Living Department of Kansas Rehabilitation Services and one of the nicest men that I have ever met, and I decided to take our growing IL knowledge and University Affiliated Program (UAP) track record working with grassroots organizations and community innovation, to apply for the RRTC grant. To our favor, 10 additional points were to be awarded to any applicant from Federal Region VII, including Kansas, because it was the only federal region that did not have a RRTC.
The grant challenged us because we had been using a UAP model that was less concerned with research and more concerned with innovation and training. Fortunately, the emerging IL field, too, placed a high value on innovation and training. To determine needs, we listened to the problems that individuals with disabilities had with services and the environment. This policy of including the intended recipients of our research efforts and including them on our advisory boards would later be a NIDDR-mandated policy termed “Participatory Action Research,” a mainstay at our Center before it was even a center and integral to our long-term success.
As we wrote the RRTC application focusing on independent living foundations and services as well as self-help, we recruited researchers and staff and matched their interests with needs. We then worked with this staff nucleus, including Neil Salkind, Ann Turnbull, and Gary Clark to develop individual research and training projects overseen by Salkind as research director, Clark and Moses as training coordinators, and myself as Center director. As we recognized the needs of the growing disability population, we developed the guiding statement of: Through research and training, improving services, enhancing the community environment, and facilitating consumer control, persons with disabilities are able to live independently. Our target audiences were: 1) individuals with disabilities, 2) families and other social support groups of disabled individuals, 3) independent living service providers, 4) policy makers in rehabilitation and independent living, 5) rehabilitation and other professionals, and professional trainees in the university community, and 6) the general public, both locally and nationally.
When the peer reviews were completed, we scored highest when the 10 extra points were added, topping even the University of Nebraska and University of Missouri, both stunned that Kansas placed higher than their established rehabilitation centers. They and another entity contacted their Congressional delegations to challenge the decision, prompting site visits at each location to gain additional information. After our site visit, Kansas , of course, was awarded the grant, and the first Rehabilitation Research and Training Center on Independent Living was established within the Bureau of Child Research. And, through the advice and assistance of Edward Meyen, we requested that the Board of Regents grant the new RTCIL center status, which meant that the RTCIL would be a long-term entity that would conduct IL research at the University of Kansas.
Early Challenges and System Refinement
We initiated the grant with considerable enthusiasm under the watchful eye
of Emily Cromar, our project officer, but our varied approaches conflicted.
Richard Schiefelbusch became aware of the initial organizational problem
and offered his usual helpful hand by suggesting that Todd Risley evaluate
our progress. Risley put his finger on the issues immediately and said
we needed a more systematic approach to develop a needs-based research
and development system. Risley, in his effective, analytic, problem-solving
mode, joined us as our second research director, and made other valued
recommendations.
For example,
Risley required us to fine tune consumer needs and to develop intervention
products tested through our research and then disseminated rapidly to improve
services. This was a novel concept in 1980 as much of any university’s
research was based on researcher interest and resulted in journal articles
or conference presentation. Today, our Needs-Based Research, Development,
and Dissemination Model, involving a dynamic interplay between researchers
and potential adopters, has become commonplace within most research projects
and centers. One early use of this agenda-setting and organizing tool that
involves consumers in shaping research questions and the survey instrument
for later problem analysis and intervention, was with our "Common Concerns
Report Method (CCRM)," that summarize issues identified by 12,834 disabled
consumers from 10 states in the late 1980s and identified consumer-generated
solutions to each issue. We continue to use the CCRM and presents results
at public forums called “town hall” meetings to plan change
in communities.
Another
concept we pioneered and put into practice was the Junior Colleague Model
in which talented graduate assistants enrolled in departments such as Counseling
Psychology, Design, Educational Psychology, Human Development and Family
Life, Public Administration, Special Education, Social Psychology, Social
Welfare, and Women’s Studies were selected to work on a Center research
team, beginning with routine data collection tasks and progressing to supervisory
roles. At the highest level, graduate assistants also designed and submitted
a research project to the management team for funding through the RTC/IL
grant. This “two-fer” proved successful because the graduate
assistant carried out the RTC/IL mission to a greater degree and the Center
provided funding and opportunity to manage and conduct research. Still used
today at the RTC/IL, this model has resulted in a number of graduate students
becoming RTCIL staff after graduation who develop their own lines of IL
research. Glen White, for example, the first scholarship recipient of the
Independent Living Leadership Training Program, pursued a doctoral degree
at the Department of Human Development and Family Life through the Center
and became our training director, then research director, and now directs
the Center.
Much
of the RTC/IL management model was patterned after Schiefelbusch and his
management style of making the most of an individual’s talents, interests,
and opportunities to perform research and acquire research funds. The beauty
of the model is that it enables researchers to be entrepreneurs within a
major research university. Had it not been for this model, I doubt there
would have ever been a RTC/IL.
In keeping
with the Life Span Institute model, we used regular and informal meetings
to plan, increase productivity, and assist staff. New staff attended weekly
meetings, or “counseling sessions” as Schiefelbusch might say,
where information was shared and problem-solving conducted. While
we were not aware of what would be called Total Quality Management much
later, we were doing it from the start with staff communicating openly across
lines of authority to achieve objectives efficiently and functionally while
constantly refining our overall systems.
Today,
our management team and a research and training team facilitate the Center’s
work. The management team, composed of the Center director, research
director, and training director, financial officer, and associate director,
meet regularly to plan, monitor progress, and oversee expenditures. The
management team interacts on a regular basis with the larger research and
training team, made up of project directors and staff who manage individual
timelines and budgets, but also have the responsibility to improve overall
systems.
Additional quality control comes from outside advisors. Initially external,
input came from the RTC/IL Regional Advisory Council, Region VII Rehabilitation
Services Administration office, Kansas IL center directors, site reviews,
and national peer review team that were used to ensure needed and quality
research, aid in the management of the Center, and provide a strong measure
of accountability. The Regional Advisory Council and independent living
center directors describe consumer needs, review research and training activities,
recommend projects, and provide guidance for keeping programs relevant to
independent living needs. The Council also serves to disseminate information
about Center accomplishments. The Region VII RSA office assists with
these functions and also works to coordinate Center activities with rehabilitation
agencies, advises the Center on appointments and future directions, and
shares current information from other research programs. Site teams
and the national peer review team provide a close look at the Center’s
organization, operation, and projects, and help us improve both the
Center and its projects.
From
the start, we have actively disseminated our research products with the
goal of knowledge utilization. We initially used familiar methods (e.g.,
mail, in-service training, conference calls) as well as University of Kansas
courses that began incorporating our research starting in 1982 and continue
to be taught today such as ABS Independent Living and People with Disability.
For product promotion, we sent periodic announcements, promotional brochures,
press releases, and catalogs to particular target audiences. We also presented
research findings and issue discussions of specific interest and importance
to that field beginning in the spring of 1981 through our quarterly Independent
Times (later the Independent Living Forum) newsletter.
This
dissemination system has provided the means to disseminate well over a million
products and even more through information technology such as the Internet
via our online catalog and Research Information for Independent Living database.
Our research also continues to be published in referred journals and presented
at national professional conferences.
Although
we have provided technical assistance in numerous ways, such as the train-the-trainer
model, one of our most noteworthy methods was the National Conference on
Independent Living initially organized by Gary Clark to further bring the
state-of-the-art practices together in 1982. Through the years, national
figures such as George H. Bush and Bella Abzug as well as IL leaders including
Ed Roberts, Irvin Zola, and Marca Bristo were among the many presenters.
Mike Jones, as the RRTC training director in 1983, oversaw future conferences
based in Washington, DC, during the 1980s and worked diligently to provide
accessible conferences. The National Council on Independent Living took
over the leadership of this conference that served as a rallying point for
passage of the Americans with Disability Act.
Through the Years
1980
to 1985: While experiencing initial growing pains, at the
end of the second year five research projects had been completed, work was
in progress on six other research projects, and eight new projects were
being designed. Our initial concentration included research projects examining
development of independence in adults with disabilities, the influence of
family on IL, survival skills for women with disabilities, involvement of
people with disabilities in ILC operation, development of state IL policies,
peer counseling programs, survey of technology in IL, and support groups.
Among
our first projects was the development of efficient and effective methods
for evaluating independent living center programs and services. These “Standards
for Independent Living Centers,” a set of minimum compliance indicators,
were used by the Rehabilitation Services Administration and are still in
use today. Providing research-based materials for independent living centers
has been a continual practice for the RTC/IL.
Some of our many projects for this target audience include an ILC orientation
manual; resource manual to help ILCs establish a funding base of local,
nongovernmental support; a directory describing peer counseling services;
and survey of ILCs to identifying problems in serving underserved populations.
We have also maintained an ILC directory, developed an assessment of community
economic impact fostered by ILCs, and provided centers with extensive technical
assistance.
Another
stand-out project from the early years resulted from the study of media
portrayal of people with disabilities. The end product, Guidelines for Reporting
and Writing About People with Disabilities, is in its sixth edition and
has been adopted by over 40 national disability organizations as well as
the American Association for Advancement of Science, National Rehabilitation
Association, Journal of the Association for Persons with Severe Handicaps,
Rehabilitation Counseling Bulletin, Associated Press Stylebook, and American
Psychological Association Publications Manual.
1985-1990: A
new core RRTC funding grant concentrated research in monitoring the state
of IL, facilitating consumer self-help, and improving IL services. Because
of the RTC/IL location, the State of Kansas was often a research beneficiary.
For example, Concerns Report data resulted in the purchase of a transportation
van and computer training program in Douglas County, accessible housing
renovation in Shawnee County, a support group for people with disabilities
in their families in Harvey and Linn counties, and a utility loan program
for residents with disabilities in Wyandotte and Johnson County, and Cass,
Clay, Jackson, and Platte counties in Missouri.
RTC/IL
researchers also collaborated with the Kansas Advisory Committee for the
Employment of the Handicapped in preparing a statewide survey of the concerns
of over 1,400 disabled citizens in Kansas to help set an agenda for executive
and legislative activity for state agencies and advocacy groups serving
the disabled. KACEH also used RTCIL data to develop a state law on public
building accessibility and mandate that public meetings of executive
agencies be held in accessible places.
In 1988,
four new research projects were added to investigate the impact of improved
disability housing options, increase utilization of accessible housing by
people with disabilities, build mentor relationships, and create and maintain
an effective consumer volunteer program in ILCs. Seven new training projects
and two new materials development projects also were added and completed,
including The Personal Attendant Care Management Training Model, which
increased the capacity of consumers to manage attendants, thus reducing
management problems and the chances of institutionalization. Another training
goal met was the identification of applied strategies that deterred unlawful
parking in handicapped-designated parking spaces.
By the
end of the decade, we were offering more than 150 products in our catalog
and had filled more than 245,000 requests for materials. More than two thousand
people received our quarterly newsletter highlighting RTC/IL research, and
we averaged about 40 training events a year. In 1989 alone, RTC/IL staff
logged over 1,100 hours of technical assistance contacts provided to over
4,050 individuals and organizations.
We also
moved from our offices in Haworth Hall to the new Dole Human Development
Center building next door. And, it was through the efforts of Glen White
that the Dole Center installed access ramps for people with disabilities.
He had discovered that the plans for the newly constructed Dole Center did
not include curb cuts, a violation of The Americans with Disabilities
Act that requires wheelchair accessibility for public buildings, and ensured
their provision.
1990-1995: We
made a major effort in 1990 to write the RRTC proposal for the next five
years. It was one of the best, if the not the best, ever written at the
RTC/IL. However, the best grants don’t always win. We contemplated
and rejected a challenge in which we might have won the battle but not the
war in the long run. With the loss of major funding, we had to cut back
on everything, including the hardest: letting valued staff go.
Our strategy
was to maintain a core staff of individuals who could rebuild funding and
maintain a minimum level of research and service. With the survival of the
RTCIL at stake, Mark Mathews, Fabricio Balcazar, Glen White, and myself
all wrote grants that were funded for more than what would have resulted
from a new core RRTC grant. The three grants included exemplary IL practices
in rural areas (Mathews), consumer recruitment of mentors (Balcazar and
White), and consumer control (Budde).
Also during the early 1990s, Schiefelbusch was recalled from retirement
to direct the Lawrence Campus Gerontology Center. We talked with him about
the potential of IL in the gerontology field; then, fortuitously, Paul Kennedy,
the innovative director of the Topeka Veteran’s Administration hospital,
contacted us about conducting research at the hospital. The RTC/IL and Schiefelbusch
accepted his offer to both work half-time at his hospital and soon found
the VA was based on a traditional medical model managed with a somewhat
military management model.
With Kennedy, we wrote and collaborated on a number of grants such as the
Gerontology Research Education Center (GREC) that involved the Leavenworth,
Kansas City, and Topeka hospitals and a study of policies and procedures
that facilitate discharge placement in less costly and more IL alternatives.
In addition, we conducted a consumer conference where veterans were enabled
to exchange information with staff and voice concerns—just like we
did in IL; however, this met with limited success. Our greatest successes
came in the form of planting IL philosophies and practices within services.
We also met a number of consultants such as Rue Cromwell and graduate students
who would play key roles in our next NIDRR RRTC grant.
During
the last few months at the VA, we decided to respond to the RFP on a RRTC
for underserved populations and IL. One of our first efforts was to define
the underserved population, which we determined were three key populations
who had brain injury, psychiatric disability, or mental retardation (now
called “intellectual disability”). Mathews took responsibility
for the head injury core, Cromwell for the psychiatric disability area,
and I for the intellectual disability area. With the help of Pam Willits
and her staff, we edited, refined, produced, and forwarded the grant to
NIDRR. Our efforts were rewarded: The application was successful and was
funded to begin in October 1993.
The new
Research and Training Center on Independent Living for Underserved Populations
was designed to systematically address the many issues that would enable
individuals from underserved populations to have opportunities to live independently.
To achieve the mission and meet the NIDRR priorities for the underserved
populations, six research and eight training projects were expedited by
consumer-empowered teams that included consumer-consultants, advocate
leaders, and IL experts in addition to researchers, trainers, and media
personnel. Most products were developed around the concept that IL services
do not need to be changed but rather augmented with accommodations for consumers
from the underserved populations. Research projects included an IL needs
assessment for underserved populations, assistive technology skills training
for consumers with psychiatric disabilities, service accommodation for consumers
with cognitive and intellectual disabilities, and facilitation of effective
board skills for underserved IL populations.
1995-2000: In 1998, as we continued our research concentration on underserved disability populations, we began our Research Information for Independent Living project. With the Independent Living Research Utilization (ILRU) Program of TIRR, we worked to improve access and use of research information by people with disabilities and other non-researcher stakeholders involved in the independent living, disability rights, and rehabilitation fields. Approaches used by RIIL include Webcasts, listservs, a review guide, and the interactive Internet database (www.getriil.org) that contains two thousand research summaries on key IL topics.
2000
-2005: Starting in January of 2001, with NIDRR funding, we
built on previous research and expanded to include a new Rehabilitation
Research and Training Center on Full Participation in Independent Living
with a five year, $2.5 million, NIDRR grant. Our initial research focused
on learning how to get people with disabilities to participate fully
in society, determining at what level they do participate, and identifying
groups that may be underserved. The four core areas of research for
the center have been increasing knowledge about disability; community
participation and wellness; cultural independent living accommodations,
and personal and systems advocacy with results readily available on
our website. Glen White, principal investigator for the new center,
led a research team of co-investigators that included Michael Fox, David
Gray, Daryl Mellard, Katherine Froehlich Grobe, Tom Seekins, Fabricio
Balcazar, and myself. White also assumed a new leadership in 2002
when be became director of the RTC/IL as I began a partial retirement
and assumed the title of founder and past director.
Our research
was directed toward greater community participation (e.g., a qualitative
interview study regarding barriers to full participation in IL), the changing
universe of disability (e.g., a population-based analyses to identify and
to better understand emerging populations of persons with disabilities,
such as those with Chronic Fatigue Syndrome and violence-induced neurological
impairments); personal and systems advocacy (e.g., evaluation of cost-effective
advocacy methods, evaluation of a Tribal Disability Concerns Report Method
for community disability planning and building tribal disability action
agendas, community participation and wellness (e.g., identification of exemplary
ways to use peer networks and communication channels to enhance and maintain
health and wellness for people with disabilities).
One full
participation project, Self-Advocacy Training for Students with Disabilities,
was completed by Yen Vo, a resident of Vietnam, who received a Ford Foundation
International Fellowship in 2001 and came to the university to obtain her
master’s degree. Vo, at the RTC/IL, researched a design for postsecondary
students to effectively lobby for better accommodations at the University
of Kansas, Emporia State University, and Washburn University. Her work has
been made into a manual and also is being made into an online class.
Another
exciting research project funded by a $615,000, three-year grant from the
Centers for Disease Control and Prevention through the Association of Teachers
of Preventive Medicine in Washington, DC began in 2002. The research team,
including Catherine “Cat” Rooney, project coordinator, of our “Nobody
Left Behind” project, investigated 30 randomly selected U.S. counties,
cities, parishes and boroughs where a natural or man-made disaster occurred
between 1999 and 2004 to determine whether disaster plans and emergency
response systems met the needs of people with mobility impairments.
Early
results of the study were presented at the first Conference on Emergency
Preparedness for People with Disabilities, supported by the U.S. Department
of Homeland Security with the National Organization on Disability on Sept.
23 in Arlington, Virginia. Through our Web survey, too, we have heard of
the many public buildings with inaccessible escape routes, the lack of accessible
transportation after a disaster event, and other problems. Because there
is virtually no empirical data on the safe and efficient evacuation of persons
with disabilities in disaster planning, we hope this study will lead to
a national model that can prevent death and injury for this population in
future disaster situations.
Looking back while looking ahead
The RTC/IL was conceived as a center without walls that would do what
was necessary to enhance the IL field and the lives of individuals with
disabilities. In this synergistic environment where consumers, researchers,
trainers, and policy makers have worked to produce much more than they could
have as individuals or groups. One of our greatest resources has been our
department affiliations and talented staff.
It should also be noted that our support systems have had the mission to
support research, training, and dissemination so that the center goals were
achieved effectively and efficiently. Leadership in these systems
was also key. Pam Willits is but one example. She has not only provided
exemplary grants management, but created an effective, functional system
to produce grants in a timely manner for over 20 years. Pam and I
have often reflected that we are like a couple of old farmers working together
to get the job done right the first time: You need a strong work ethic,
you need to work with others, and you need to be just a tad bit stubborn
about doing it right. Everyone is a link in the chain and as important
as any other on the RTC/IL team
Some
former RTC/IL staff have launched research in other fields at The University
of Kansas such as Steve Fawcett, founder and director the nationally-recognized
Work Group on Health Promotion and Community Development; Jennifer Lattimore,
research assistant professor; Jean Ann Summers, associate research professor;
Ann Turnbull, co-director of the Beach Center on Families and Disability;
and Mark Mathews, professor of applied behavioral science and associate
director of the Gerontology Center. Other valued colleagues include:
- Yolanda Suarez-Balcazar, associate professor, Department of Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago
- Fabricio Balcazar, associate professor in the Department of Disability and Human Development at the College of Associated Health Professions and an associate professor in the Department of Psychology at the University of Illinois at Chicago
- Michael Jones, vice president for research and technology at the Shepherd Center in Atlanta, GA, and co-director of the Rehabilitation Engineering Research Center on Mobile Wireless Technologies Design
- Barbara Bradford Knowlen, founder of Barriers Breakers, which provides benefits counseling, assistance, training, in Oriskany Falls , New York , and author of How To Kick Ass and Win manual
- Howard Moses, who served in key IL leadership positions within the Rehabilitation Services Administration and NIDRR
- Ray Petty, a disability consultant who has been involved in disability rights through research, the Kansas Commission on Disability Concerns, executive director of two ILCs; the Kansas Department of Health and Environment; and Kansas' Special Education Advisory Committee
- Todd Risley, professor of psychology at University of Alaska and author of more than 100 professional articles and book chapters and five books and monographs
- Tom Seekins, director of Rural Institute on Disabilities at the University of Montana since 1993
- Gary Ulicny, president and chief executive office of Shepherd Center
In 1980 when we first implemented the RTC/IL, there really wasn’t any
IL knowledge base. The progress of the RTC/IL over the past 25 years
has contributed greatly to the IL knowledge base and is due to all of the
fine people who have worked so hard at all levels of the RTC/IL. Our
grants have totaled over $16,945,000 and we have disseminated close to two
million intervention products. We are proud to have contributed to the success
of the more than 300 ILCS in the United States and countless international
organizations and also to have furthered IL for the millions of people with
disabilities. While I knew intuitively in 1979, that the ILC model
would make a major impact in the world, I had no idea of the tremendous
impact that it would make in both the disability and other fields as well.
