Independent Living Institute

  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 publications.

Address: 4089 Dole Bldg./LSI,University of Kansas, Lawrence, KS 66045, United States

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 studies.

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 and discussed.

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

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