ADA Participation Action Research Consortium (ADA-PARC)
- Lex Frieden, M.A., LL.D.(hon), University of Texas Health Science Center at Houston
- Joy Hammel, Ph.D. OT/R, University of Illinois at Chicago
- Southwest ADA Center
- Great Lakes ADA Center
- Southeast ADA Center
- Pacific ADA Center
- Rocky Mountain ADA Center
- Mid-Atlantic ADA Center
Several national research studies have shown that we have made significant strides forward in increasing the full participation of citizens with disabilities; however, we continue to face significant participation disparities when comparing to the general population. The majority of this research has involved self reports of satisfaction or engagement in arenas of societal participation. What is missing is rigorous research to examine what factors are influencing this participation within and at community and regional levels; a critical gap in knowledge translation if ADA Centers and community stakeholders (e.g., policy makers, planners, public and private entities, funders and providers of services) are to consistently and efficiently identify key participation disparities and strategically act to address them, or gain ideas from other similar communities that may demonstrate promising practices to decrease disparities. Although we have seen the growth of such “community indicator” and “strategic gap analysis” initiatives in aging, public health, housing, and planning fields, these efforts have been challenged as to whether they are a) fully inclusive and representative of indicators of highest priority and relevance to citizens with disabilities, and b) if the information gleaned can be translated to and directly used by ADA Centers, stakeholders and citizens with disabilities to reduce participation disparities and increase opportunities within and across communities.
The ADA Participation Action Research Consortium (ADA-PARC) will fill this gap in knowledge and translation to systems and community change by conducting a multiregional strategic gap analyses across three primary participation areas mandated by the ADA: community living, community participation, and work/economic. In some areas, such as community living and work, this will involve mining existing large population and community datasets so we can inform the benchmarking of key participation disparities and promising practices at state, regional and community levels. We will also collect new individual data with people with disabilities who are trying to move out of nursing homes and institutions to the community post ADA and Olmstead Decision to add their participation experiences and issues, a voice that has not been represented in existing ADA and participation research.
However, there are very few existing indicators of community participation at the community level. As a second aim, this consortium of ADA Regional Centers and a network of disability and ADA stakeholders will utilize a participatory Strategic Gap Analysis process a) to identify key indicators of high priority and high feasibility to collect in communities, b) create a Community Participation Action Toolkit (CPAT) for assessing these indicators within communities, c) pilot test this Toolkit within 18 communities across 6 collaborating ADA Center regions, d) analyze results and translate back to communities in the form of benchmarking reports, and e) create a toolkit of resources to accompany CPAT for both ADA Centers and community stakeholders to action plan initiatives in their communities to reduce disparities and increase full participation. The aim is to create a tool and a systematic process for assessing community participation at the community level that could be shared with communities via the ADA Center collaboration, and formally linked to ADA Center information resources and technical assistance, and future participatory research initiatives.
The ADA Participation Action Consortium is a program of ILRU (Independent Living Research Utilization), at TIRR Memorial Hermann in Houston, Texas. is funded by a grant (H133A120008) from the Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR). NIDRR is not an enforcement agency.