Review of Literature
Community Environment Access and Participation Research: "Community Participation" represents the "degree of connection that citizens with disabilities have to their physical and social surroundings." (National Organization on Disability, 2000, p.1). Despite its importance within the disability rights movement, we have only begun to investigate what community living and participation mean, how they are experienced by people with I/DD who are aging, and how to effectively assess community participation from their specific perspectives. The Americans with Disabilities Act (ADA), Telecommunications Act (Section 255) and Section 508 of the Rehabilitation Act all have guidelines for evaluating access to community spaces, inlcuding "virtual participation" via technologies , though they have focused primarily on physical and sensory components. Additionally, two environmental design approaches provide further guidance: 1) universal design (Connell, et al, 1997) and, 2) design of sustainable, age-friendly/elder ready/access ready communities ( Heller, Janicki, Hammel & Factor, 2002; Hernandez, 2000; WHO, 2003). While these initiative offer guiding principles, they do not yet offer assessment tools or a systematic protocol for evaluating environmental participation. Moreover, both lack adequate research and practical strategies for people with I/DD. Finally, the guidelines tend to focus on the individual level, neglecting social support, interdependence, and inclusion factors.
Recently, Hammel and colleagues (Hammel & Rothert, 2002) operationalized universal design principles into an assessment protocol and piloted it with 65 people aging with disabilities. Participants were asked to identify participation goals for a community environment, to use the space and evaluate the supports and barriers in it, to quantitatively rate the features, and to qualitatively describe issues and recommendations for improvement. The present proposal applies these principles people with I/DD as they co-create design guidelines that reflect their participation needs and preferences.
AT-EI Research with People with I/DD:
Assistive technology and environmental interventions (AT-EI) have been shown to maintain or improve functional performance when used by people with I/DD as they age in the community and in nursing homes (Hammel, 2001; Hammel, Lai & Heller, 2002). However, AT-EI use is influenced by important others (e.g., family, staff), and by the type of living situation, with less community participation among people living in nursing homes, ICFs, and group homes than in family homes (Hammel, 2003). In response, the ATLAS (AT Long-Term Advocacy and Support) intervention was piloted in the RRTC-ADD to strategize ways to adapt the environment to support function and choice with aging. The program was based on Lawton's environmental press model (Gitlin, et.al., 2001). In the ATLAS program, therapists and advocates worked with consumers and important others to identify issues interfering with participation, and to create action plans to adapt the environment to promote choice and control. We learned several important lessons from this pilot intervention trial that lead to this new project:
- Many consumers with I/DD, and people interacting with them, lacked awareness of strategies to adapt the home environment for people with I/DD as they aged
- Shifting focus to the environment and using a consumer and important other team-directed problem solving approach enabled them to identify and effect changes
- Exploring activities in context was a very useful strategy for identifying possibilities, setting goals, and collaboratively planning and trying out environmental strategies
- Adaptations made were also useful to other people in the same environment
- There is a need for aconsumer-directed tool for evaluating environments that can be linked to a pooled database of common environmental barriers and effective strategies to support participation by people with I/DD.
Sample Population and Methodology
Approach: This series of related studies is based upon a Participatory Action Research (PAR) approach to sustain active consumer and stakeholder participation throughout the project (Reason & Bradbury, 2001; Tewey, 1997). The approach involves a mixed, qualitative/quantitative methodology to: Stage 1) create a web-based, community environment assessment tool informed by consumer-directed participation goals and narratives of supports and barriers; Stage 2) use this tool to conduct community environment participation assessments across three states and a variety of environments with people with I/DD; and Stage 3) use the pooled database of results to identify major barriers and supports to participation and create on-line summary reports and guidelines.
Sample Population: The sample is 220 participants with I/DD, age 30 or older, recruited from three collaborating states (Illinois, Washington, New York). They will be purposefully sampled to represent diversity in regard to age, ethnicity/race, gender, and type of I/DD. The Stage 1 narrative analysis will use a sample of 20 participants, each of whom completes 3 environmental assessments (home, familiar community, new community setting), generating a total of 60 assessments. We will collect an additional 200 participant evaluations in Stage 2 across various environments in Yrs. 2-4.
Data Collection and Measures
Data Collection and Measures: A teleconference brings together representatives from Illinois, New York, and Washington, including 1 peer mentor with I/DD and a community access specialist from each state, who will report findings back to state stakeholders and consumer groups. The team discusses specific barriers and supports to community participation by people with I/DD, and reviews the method for gathering consumer-directed participation goals and narratives and creating a shared environmental assessment tool
In Stage 1, a qualitative study will be conducted in Illinois with adults with I/DD and important others (as identified by participants) to explore community environments, and to create the initial data pool of assessment items. A team consisting of a peer mentor with I/DD and an access specialist will be trained to conduct participant observations with consumers as they navigate designated environments. Participation will be observed in: 1) home environment, 2) familiar community environment chosen by consumer, and 3) new community environment in which the consumer would like to participate. For each environment, participants complete participation goals with qualitative narratives describing the individual, immediate social/community, and system level supports and barriers most affecting their participation. The assessment team takes detailed qualitative field notes on participation in the environment to identify features (physical, cognitive, social, system) influencing participation, strategies to support participation, and issues/barriers encountered. Field notes will be supplemented by digital pictures and videos of participation in action with the consent of participants. Following each assessment, a member check of findings will be conducted with participants to add details to the narrative.
Based on results from stage 1, the environment assessment tool will be constructed and piloted. Tri-state representatives will meet to provide feedback on the web-based tool and to receive training in setting up peer mentor/access specialist access teams, conducting environmental assessments and entering narratives into the web-based data system. Partners will provide feedback on the web system via on-line discussion groups and teleconference calls. The tri-state partnership will conduct 63 assessments (21 per state) of home/living environments-(10 family homes and 11 group homes); 69 assessments (23 per state)of community environments (11 part of routine, 12 new but desired); and69 assessments (23 per state), of transitions and the environments/technologies used during them (11 transportation systems, 12 information technologies (e.g., Email, Internet), and the settings in which participants access them (e.g., library, community computer lab). The tri-state partners generates guidelines for addressing environmental access and participation barriers and makes plans to sustain the community environment database with new environments and consumer input.
Qualitative Analyses: All qualitative data will be managed and organized using ATLASsoftware that allows for coding, iterative comparative analysis and conceptual model comparison. Data will be analyzed by constructing thematic accounts of barriers and supports to participation, followed by comparison across narratives to triangulate findings and apply to emerging descriptive and explanatory models (Agar, 1986; Mishler, 1990). Member checks will be conducted with participants to check trustworthiness of interpretations and build findings (Huberman & Miles, 1994).
Quantitative Analysis: The narrative analyses in Stage 1 will use 'Omnibus' analysis to collect and code narrative data (Fogg & Colangelo, 2003). Omnibus analysis uses an electronic, relational database to collect narrative data related to supports and barriers, assign them to sensible content domains, and classify them as to the extent these supports or barriers affect participation as perceived by the consumer. The narrative datum is recorded, classified to a domain, and assigned a valence (how much this factor influences participation for the respondent). All three steps will be assessed for inter-rater reliability. The advantage of Omnibus analysis is that it allows the narrative to define the content domains, and the participants to define their own content domains. Furthermore, Omnibus analysis allows researcher to collect data that is unique to a population, such as people with I/DD, as well as to specific environments. The self-report items can be combined into a unidimensional scale, which can be used to apply these participant-centered concepts to a larger sample (Bormuth, 1970;Hayduk, 1987).
Stage 2 Data Analysis. After defining the most important content domains associated with these environments, the narrative data will be used to construct scales to measure supports and barriers to participation, through transformation of the narrative data into questionnaire items (Bormuth, 1970). The newly formed questionnaires will be administered to a small pilot sample (of 5 people) to see if items are understandable and convey the desired meaning, and then to a new larger sample of 200 participants. A confirmatory factor analysis will be conducted to insure that the content domains remain intact and unidimensional. Finally, the IR model for the remaining scales will be estimated to determine: a) number of IR parameters that are optimal for these data, b) fit of the data to an IR model, and c) item difficulty.
Anticipated Findings and their Implications for Future Research
With its rich qualitative and quantitative descriptions of environmental barriers and supports and participation goals as defined by people with I/DD, these data will be useful for evaluating diverse environments, and informing guidelines to improve participation by people with I/DD. The web-based, consumer-directed, community environment assessment tool will identify best practice examples of environmental accommodation strategies. It has the potential to grow exponentially over time as states, community programs, consumers, and businesses add to the data pool. We plan to expand the tool to examine other community environments, including worksites, schools, and medical/health/fitness facilities and also to expand its application to other disability groups. The methodology can also be used to evaluate technologies as tools that may promote or hinder participation within context (e.g., environment of a library, computer lab, worksite).
Active Protocol # 2004-0010
Tools Being Developed
Tools Being Adapted
Web-based tool for evaluating participation in home & community environments.
Due to delays in IRB processing, we are a few months behind in finishing data collection with the initial group of 20 participants which then provides the basis for the web based data collection system. However, we have recruited
and consented all subjects and are proceeding with home and community evalations. At this point, the timeline does not need to modified. To date we have collected home and community assessments with 15 participants, and are now completing the final 5 evaluations, and beginning a round of community, new/unfamiliar assessments.
Data Collection Status
Data collection is currently in process.
No project modifications.
Project Progress to Date
To date we have organized participation barriers and supports at the micro, meso and macro levels in the group home and individual home settings, and are analyzing similar data for community familiar settings. We have used a PhotoVoice methodology that involves participants using cameras to chronicle participation visits; to date, this methodology has been successful in increasing choice and control, and in yielding rich detailed descriptions via photos of barriers and supports that were not otherwise available via interview with participants.
We are pursuing this methodology for transfer to the web for inclusion in the web-based data collection and reporting system.
- Hammel, J. (2004). Assistive Technology as Tools for Everyday Living and Community Participation while Aging. In D. Burdick & S. Kwon (Eds.), Aging and Technology. NY, NY: Springer Publishing.
Aging with Intellectual Disability: Strategies to Evaluate and IMprove Participation. (Presenter: Joy Hammel & two consumer advocates).
Participation and environmental access audits of 6 group homes and 3 individuals homes with reports to community organizations on how to address access barriers.
Consultation with People First group in community regarding strategies to increase participation in self and collective advocacy activities in the community.
Community organizations currently implementing suggestions to improve access in homes.
Participation in the community following stroke, 10/04-10/07; NIDRR, RRTC on Stroke, project amount: $230,000.
Recognition and Service
Hammel, J. Editorial Board: Journal of Occupation, Participation and Health Peer review panel: NIH standing committe on technology & rehabilitation.
Hammel, J. Appointed Executive Officer of Society for Disability Studies (International professional organization on Disability Studies)