Research and Evaluation
ILRU Research & Training Center
on Independent Living at TIRR
A five year grant to establish a research and training center on Independent Living has been awarded to The Institute for Rehabilitation
and Research (TIRR) and will be operated by the ILRU (Independent Living
Research Utilization) program located in Houston, Texas. Funded by the national
Institute on Disability and Rehabilitation Research, U.S. Department of
Education, the ILRU Research and Training Center on Independent Living at
TIRR will develop and implement research, training, and technical assistance
projects which focus on ways individuals with severe disabilities can live
more independently in their communities. In the area of research, projects
will be conducted on the meaning of independence to people with disabilities,
techniques used to maintain independent lifestyles, and ways programs serving
disabled people can better assist them in living as independently as possible.
A variety of training activities, including a bi-monthly newsletter, a technical
report series, and a computerized bulletin board, will be used to disseminate
information resulting from these research projects as well as information
about model research and demonstration programs around the country.
Under the technical assistance wing of the center, methods will be developed
through which individuals with expertise in different aspects of Independent
Living can be accessed by Independent Living programs and other interested
organizations.
Since its establishment in 1977, ILRU has served as a national center for
information, training, and technical assistance in Independent Living. One
of its first accomplishments was to develop a definition of Independent
Living, which has since become widely accepted in the field. It also developed
a system for categorizing different models of Independent Living programs,
conducted one of the first national surveys of Independent Living programs,
and has since maintained and annotated registry of programs in the country.
In addition, ILRU has taken a leading role in developing and disseminating
information related to rural Independent Living activities and is widely
recognized for its innovative management training programs for upper level
administrators of Independent Living centers.
ILRU project staff serve Independent Living programs, state rehabilitation
agencies, organizations of disabled individuals, federal and regional rehabilitation
agencies, rehabilitation medical facilities and other service providers,
disabled people and their family members, educational institutions, and
other organizations active in the field, both nationally and internationally.
Major accomplishments
- Designated and funded by National Institute on Disability and Rehabilitation
Research as a research and training center in Independent Living in 1985.
- Developed and conducted management training programs for directors
and middle managers of Independent Living centers.
- Served as a rural Independent Living research utilization center.
- Directed the design of a comprehensive management training program
using a simulation format for directors and administrative staff of Independent
Living centers and other nonprofit service agencies.
- Developed a comprehensive set of definitions and a method for categorizing
model of programs providing Independent Living services.
- Conducted comprehensive evaluations of Independent Living center networks
operating in the United States.
- Sponsored major conferences of national scope, training persons from
all over the country.
- Provided on-site technical assistance to Independent Living centers
in 32 states and five foreign countries.
- Compiled a national directory of programs providing Independent Living
services, which is updated regularly.
- Developed and maintained the ILRU National Database on Independent
Living Programs, a computerized listing of data on 167 programs.
- Distributed books, pamphlets, posters, and videotapes related to Independent
Living.
- Maintained an on-going agenda of research, publications, and conferences
on attendant services, including publishing a current bibliography on attendant-related
literature, and developing a method for assessing the adequacy of attendant
services.
Tenets for research and training on Independent Living
In recent years there has been increasing recognition
of contributions that severely disabled people can make and are making in
their communities. This recognition is largely the result of the Independent
Living Movement --a network composed principally of pioneering individuals
with disabilities who broke from the confines of restrictive attitudes and
traditional service for disabled persons and established a new focus on
the continuum of needs for Independent Living and the value of the disabled
person as the Independent Living service provider. The Independent Living
Research Utilization (ILRU) program, founded and staffed predominantly by
severely disabled persons, was the first organization to respond to the
Independent Living movement's need for research, training, and technical
assistance. Since 1977, ILRU has contributed significantly to the spread
and acceptance of the goals of the movement and has developed services to
increase the level of sophistication of Independent Living centers.
The ILRU Research and Training Center on Independent Living at TIRR (The
Institute for Rehabilitation and Research) focuses on making significant
contributions to the body of scientific and practical knowledge about independence
and Independent Living for persons with disabilities. Rather than restrict
potential Center collaborators to individuals located in the Houston area,
a deliberate effort has been made to involve some of the nation's most experienced
researchers, trainers, and providers of services in the field of Independent
Living. Some participate as senior Center consultants, some as advisors,
and some as consultants on specific projects. Additionally, several members
of the Center's staff are professionals with disabilities who have long-standing
involvement in issues bearing on Independent Living including experience
as founders, board members, and directors of Independent Living centers.
In these critical, formative years for the Independent Living Movement,
a research and training center has the potential to play a powerful supportive
role. The staff of ILRU and those who collaborate with them conduct the
activities of the Center according to the following tenets:
Tenet 1: The Center should have persons with disabilities play substantial
roles at all levels of operation.
Personal experience with disability is an invaluable
and irreplaceable qualification for persons involved in research and training
activities in this field. The ILRU Center staff includes six disabled persons
(four of whom have severe, multiple disabilities) as research director,
technical assistance director, research associates, research assistants,
and administrative assistant. Other disabled persons are involved as senior
Center consultants, project consultants, and advisors. All efforts are made
to acquire the services of persons with a variety of disabilities as new
positions become available.
Tenet 2: The Center should conduct research and offer training and technical assistance opportunities that lend support to state and local agencies and organizations in providing the best quality Independent Living services to disabled persons.
Providers of Independent Living services should
be integrally involved in the conduct of all Center activities.
The Center's principal constituency is comprised of organizations which
provide services to facilitate Independent Living for persons with disabilities.
This includes Independent Living centers, state agencies which fund Independent
Living centers, and other private and public organizations which sponsor
Independent Living centers or provide Independent Living services directly.
It should be noted that while many of the Center products and programs will
focus on and be of interest to consumers, the Center, as a general rule,
avoids offering services directly to consumers in favor of conducting activities
designed to promote development of strong service delivery components at
state and local levels.
Tenet 3: Research presents the cornerstone upon which training and technical
assistance programs are developed, leading to quality service provision.
Given the grassroots origins of the Independent Living
Movement and the overwhelming individual needs which Independent Living
centers attempt to meet, it is understandable that service delivery has
traditionally been given a higher priority than research and training programs.
We at ILRU believe, however, that before Independent Living services can
reach a level of maximum impact and effectiveness for individuals and communities,
training and technical assistance opportunities must be available and must
be developed from sound basic and applied research. Scientific investigation
into needs of disabled persons and into the most effective techniques and
mechanisms for meeting these needs will allow for development of maximally
effective training and technical assistance programs.
Tenet 4: The Center should conduct research and offer training programs
that will have an impact on national policy.
Lasting change on a national scale in the many areas
integral to Independent Living must be accompanied by changes in national
policy. The Center strives to conduct quality research in order to provide
reliable and valid information to authorities who make policy and who must
translate it into feasible and equitable plans of action. An example of
such an application is the National Policy for Persons with Disabilities
developed by the National Council on the Handicapped which mentions independence
as a criterion for all disability related services.
Tenet 5: The Center should use existing resources to the greatest extent
possible.
As noted above, considerable pioneering work has
been done to develop effective Independent Living services by both researchers
and service providers. The Center should make concerted effort to identify
and build on this work without duplication and should establish collaborations
with individual researchers, programs directors, and Independent Living
centers to maximize benefits accruing from available expertise and interest.
Independent Living Research Utilization
Address:
ILRU at Texas Institute for Rehabilitation,
2323 S. Shepherd, Suite 1000, Houston, TX 77019, United States.
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