Background: Developing Participation Measurement Systems and Training

This study began in 2006. Here is information about the project's beginning phases.

Overview

In the past, measuring participation of people in their communities has been done in rehabilitation units through a comparison of people with disabilities to people without disabilities. This “medical model” doesn’t take into account the interaction of individuals with their environment and other factors. Several newer measures have been designed to study changes in community participation of people with disabilities. But each still falls short of addressing the many factors involved in determining the interaction of an individual who has a disability with his or her environment. For a more detailed literature review, click here

Purpose

This research ideally will validate a method designed to gauge the interactions of an individual with disability and the environment.

Participant Recruitment

The research team sought participants who have mobility, vision or hearing impairments to complete two online surveys. Click here for information.

Anticipated Benefits

Researchers can apply these measures to various disability services to determine their effectiveness in measuring increasing consumer participation in the community. If successful, services will have evidence they should continue. When measures detect problems or lack of success, results will pinpoint needed improvement areas.

Hypothesis

Modifications to existing measures will improve the assessment of participation at the individual level and participation at the community unit of analysis

Study Design

Repeated testing will be done to test reliability of changes to a combination of these measures: Characteristics of Respondents, Facilitators and Barriers to Participation Survey by People With Mobility Limitations, Participation Survey in Major Life Activities by People With Mobility Limitations, Community Health Environment Checklist, and Community Participation and Perceived Receptivity Survey. For a more detailed description, click here.

“The underlying premise of the work proposed is that one measure or measurement system does not apply to all people with disabilities for issues related to improving community participation.” David Gray, Ph.D.

Check out this call excerpt regarding the project.
"People at Paraquad, an independent living center, are giving us a lot of input on how to phrase questions and what they are thinking about when they answer a question." Holly Hollingsworth, Ph.D.
Read more from Hollingsworth interview.
Listen to Hollingsworth excerpt.

About

The medical model
In this view, a person’s disability is thought of as his or her problem that may be “cured” or made “more normal” by medical, social, occupational, and other means. Disability rights advocates say this view promotes a negative, disempowered image of people with disabilities. It makes the “abnormal” individual have the problem rather than assigning the problem to the political, social, and physical environment.

Americans with Disabilities Act
In 1990, this federal law was passed that prohibits discrimination against people with physical or mental disabilities in employment, public services and places of public accommodation, such as restaurants and stores.

Rehabilitation
A process that maximizes individuals' ability to live independently in their community, rehabilitation initially focused on medical needs or employment.

For online information, visit
U.S. Dept. of Justice ADA Home Page

Americans with Disabilities Act (ADA)

Rehabilitation Services Administration (RSA) 

For more information, contact David Gray, Ph.D., principal investigator, grayda@msnotes.wustl.edu; Holly Hollingsworth, Ph.D., statistician, hollingsworthh@msnotes.wustl.edu; Jessica Dashner, OTD, OTR/L, research associate, dashnerj@wusm.wustl.edu; Denise Dickerson, B.A., data manager, dickersond@wusm.wustl.edu; and the Research and Training Center on Measurement and Interdependence in Community Living at the RTC/IL, 4089 Dole, 1000 Sunnyside Avenue, Lawrence, KS 66045, 785.864.4095 (voice), 785.864.0706 TTY, RTCIL@ku.edu
National Institute of Disability Rehabilitation Research grant H133B060018