Research & evaluation
The Research and Training Center on Independent Living (RTC/IL) was established
in 1980 to help individuals with disabilities live more independent lives.
The Center conducts in-depth research and training on current issues in
the Independent Living field. Research and training staff from a variety
of disciplines at the University of Kansas have joined together to help
increase opportunities and choices available to persons with disabilities.
The RTC/IL produces materials developed from preliminary studies, research
reports, and training activities, such as presentations and seminars. Publication
efforts are aimed at timely dissemination of information on topics such
as legal and political issues, services for persons with disabilities, advocacy
and consumer control, and community responsiveness. The RTC/IL offers a
Catalogue of Publications free upon request which currently lists available
Address: 4089 Dole Bldg./LSI,University of Kansas, Lawrence, KS 66045, United
The ILRU (Independent Living Research Utilization) Research and Training
Center on Independent Living has a number of projects under way central
to issues in Independent Living: Operational Definition of Independence:
The project is designed to develop an operational definition of independence
that incorporates perceptions of control over one´s life, psychological
factors, and behavioral or functional characteristics. Toward that end,
an assessment instrument to quantify an individual´s independence in
each of the above 3 domains was developed--the Personal Independence Profile
or PIP. The PIP was first tested on 61 severely physically disabled subjects
referred by an urban and a rural ILC. A demographic questionnaire was administered
covering basic personal characteristics, activity patterns, use of attendant
services, and health. Data collected is currently being analyzed for correlational
relationships between PIP scores and personal demographic and behavioral
characteristics. The next step will be to conduct validity tests of PIP
by administering the PIP to 48 individuals of known characteristics referred
by 4 ILCs in various parts of the country. Congruence between their score
profiles and general assessments of independence given by the ILC staff
will be determined.
Parameters of Independent Living: Their purpose is to maintain a database
on the status of IL programs nationally and through analysis, identify trends
in their development, the emergence of new problems and new solutions for
the delivery of IL services, and changes in the characteristics of consumers
of these services. The survey used in previous ILRU studies was refined
and mailed to each of the more than 300 programs listed in the ILRU Directory
of Independent Living Programs. Information was solicited on populations
served, services provided, characteristics of persons providing services,
methods by which services are provided and programs administered, funding
sources, and relationships between programs and their community. Profiles
of each program responding to the survey are published in the ILRU Registry
of Independent Living Centers.
The first examination of the data addressed questions of compliance with
requirements for consumer control of IL centers. Results indicated that
compliance levels with key requirements of Title VII, the IL provision of
the 1978 Rehab Act, are quite low. Only 51% of programs receiving funds
meet requirements for consumer involvement in direction, management, and
service delivery. Complying programs were shown to offer significantly more
services and serve significantly more persons than noncomplying programs.
Address: ILRU at Texas Institute for Rehabilitation, 2323 S. Shepherd, Suite
1000, Houston, TX 77019, United States.
Source: Disability Studies Quarterly, Summer 1988.
DeJong, Gerben, The Movement for Independent Living: Origins, Ideology,
and Implications for Disability Research, Tufts New England Medical Center,
Boston, MA, 1979.
Evaluation of Independent Living Movement in relation to disability research
and services; an in depth analysis of movement's constituency, origins,
legislative history, and relationship to allied social movements (e.g.,
civil rights, consumerism, de-institutionalization).
DeJong, Gerben. Environmental Accessibility and Independent Living Outcomes:
Directions for Disability Policy and Research. 1981. University Center for
International Rehabilitation Publications. Available from ILRU.
Examines the role of environmental barriers as constraints to Independent
Living and the policy issues incumbent on these findings.
Stoddard, Susan, "Evaluating Program Methods and Results", in
Crewe, Nancy M. & Zola, Irving Kenneth, Independent Living for Physically
Disabled People, Jossey-Bass Publishers, San Francisco, 1983.
Brooks, Nancy A.,"Using Field Research to Gain Subjective Insights",
in Crewe, Nancy M. & Zola, Irving Kenneth, Independent Living for Physically
Disabled People, Jossey-Bass Publishers, San Francisco, 1983.
Disability Studies Quarterly. Editor Kenneth I. Zola, Dept of Sociology,
Brandeis University, Waltham,MA 02254, United States.
This quarterly publication focuses on a different theme each issue. It features
essays; book reviews; film critiques; call for papers; grant proposals,
and manuscripts; and reports on current research in the field of disability
Prof. Harlan Hahn,
Program in Disability and Society, University of Southern California,
Los Angeles, CA 90089-0044,, United States.
Disability, Handicap & Society
From the editorial of the first issue:
"In the past decade important changes have taken place of both attitudes
to, and policy towards, disability and handicap. Alternative perspectives
to the dominant medical model have provided a series of serious challenges
to official or professional interpretations that have emphasized individual
deficits or problems. An important contribution to this work has been made
by disabled people themselves. Definitions of disability and handicap have
been increasingly acknowledged to be relative to specific historical and cross-cultural
factors. Custodial approaches have been seen to be inadequate an unacceptable,
resulting in greater emphasis being placed on community care and integration.
Policy in many instances has been piecemeal, cosmetic and lacking carefully
thought through guidelines. Where appropriate frameworks ar being developed,
too often the money to implement subsequent programmes is not sufficient or
even made available. Given the impact of economic recession, the task of ensuring
that even the basic needs of these groups are met, is becoming an increasingly
daunting task facing all societies.
It is against this global picture that this new international journal is being
published, and we hope that its pages will reflect the debates and struggles
that are taking place locally, nationally, and internationally around such
issues as human rights, discrimination, definitions, policy and practices.
The aim of Disability, Handicap & Society is to provide a forum where
various issues and questions on disability and handicap can be highlighted
We do not wish the journal to be viewed as a vehicle for merely representing
professional perspectives. Thus, we want to encourage the consumers of services
and people with disabilities to speak for themselves. We thus expect accounts
to critically examine institutional and social relationships, to reveal power
relationships and the reality of decision and policy making. We would particularly
welcome case studies and analyses that seek to place debates within the context
of the common social position of disadvantaged groups."
Carfax Publishing Company,
P.O.Box 25, Abingdon, Oxfordshire OX14 3UE, United Kingdom
for Power contents