R-1, New Measures for Assessing Community Participation: Developing Participation Measurement Systems and Training

The Bottom Line

This project has developed three new measurement tools that examine the personal and environmental factors that act as either barriers to or facilitators of community participation by people with disabilities.

The surveys created in this project will help independent living centers monitor the progress of their programs and assist them in gathering information to report to funding agencies. While other measures exist for participation, including the ADAAG, these new measures were developed by people with disabilities for people with disabilities.

Background

Three surveys are being developed and tested in the project. They can be scored to allow for comparison between individuals with similar impairments and limitations.

• The Characteristics of the Respondent (CORE)
• The Participation of People with Impairments and Limitations Survey (PARTS/G)
• The Survey of Participation and Receptivity in Communities (SPARC)

CORE

The Characteristics of the Respondent was designed to help researchers understand what personal factors influence participation for people with disabilities. The measurement tool inquires about personal demographics, benefits received, any disabling conditions (physical, visual, hearing, cognitive or emotional impairment), primary diagnosis for each identified disabling condition, and secondary conditions.

PARTS-G

The Participation of People with Impairments and Limitations Survey covers a variety of aspects of participation in 24 different major life activities performed in the home and community. A participation score can be calculated for each activity and for the impact of supports (such as assistive technology and personal assistance services). The PARTS-G asks questions about how much time or how frequently participants do these activities in their daily lives. It also questions the participant about the difficulty, pain and fatigue they have while doing the activities and any support they use.

Figure 1 below is an example of how the PARTS-G can be used to examine evaluative participation (choice, satisfaction, and control) scores in activities within a domain. It compares evaluation scores for individuals with hearing loss, low vision, and individuals who use power wheelchairs (PW), manual chair (MW) or canes/crutches/walkers (CCW).
Evaluation of self-care data

SPARC

The Survey of Participation and Receptivity in Communities is a self-reported measure of quality of participation in 19 community sites. Using the SPARC, a total participation score can be calculated per site for the responsiveness of people at the site and for the accessibility.

For each site, participants report their community participation with respect to importance, control, choice, satisfaction, pain and fatigue, difficulty in doing ctivities with and without support, physical factors in the environment, interpersonal responses of people at the site, and use of transportation to visit the site. This assesses the person’s participation across environments. Figure 2 below is an example of how data from the SPARC can be used to examine the participation of individuals in various sites in the community.

Sites in the community that are visited [d]

Testing the Surveys

The surveys have been filled out by a national sample of individuals who are between the ages of 18 and 75, live in the community, have access to a computer, can read at or above the 6th grade level, can enter responses into a web-based survey or direct another individual to enter their responses into a web-based survey, have a mobility impairment, a low-vision visual impairment (i.e. the individual has not been medically diagnosed as blind but self-identifies as having very low vision) or a hearing impairment (i.e. the individual has not been medically diagnosed as deaf but self-identifies as being hard of hearing).

Participants were asked to complete either the CORE and PARTS/G or the CORE and SPARC surveys. Participants were recruited from a variety of organizations that work with people with disabilities. Information on the study was advertised through Independent Living Research Utilization and disability-related web sites such as Wheelchair Junkie and Pride Mobility.

About this Study

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; or 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 on Disability and Rehabilitation Research grant H133B060018

RTC on Measurement and Interdependence in Community Living

More information on this project: