The Institute's more than 40-year history of developing demonstration programs and evaluating systems provides an informed perspective: one that brings together the best of working in community networks, the Institute's successful program exploration, and academic knowledge of best practices.
The Institute on Disabilities conducts Participatory Action Research (PAR) designed to improve the quality of life for people living with intellectual and developmental disabilities (ID/DD), autism spectrum disorders (ASD), speech, language and communication disorders, and other disabilities that result in access and functional needs.
What is Participatory Action Research (PAR)?
"Participatory research is defined as systematic inquiry, with the collaboration of those affected by the issue being studied, for purposes of education and taking action or effecting change." Green et al (2003:419)
Principles of PAR
- Recognizes community as a unit of identity. PAR research works explicitly with communities. Community may be defined by geography, or as a community of identity, which is geographically dispersed but with members who have a sense of common identity and shared fate.
- Builds on strengths and resources within the community. This research should explicitly identify, support and reinforce social structures, processes, and knowledge already existing in the community that help them work together to improve their lives.
- Facilitates collaborative partnerships in all phases of the research. PAR research involves community members in every phase of research where they express an interest in participating, including: problem definition, data collection, interpretation of results, and application of the results to address community concerns. This may involve applying skills from outside the community, but should focus on issues identified by the community, and create situations in which all parties can truly influence the entire research process.
- Integrates knowledge and action for the mutual benefit of all partners. Though the research project itself might not include a direct action component, all parties must have a commitment to applying the research results to a social change effort intended to benefit all partners.
- Promotes a co-learning and empowering process that attends to social inequalities. PAR research should recognize the inherent inequalities between marginalized communities and researchers, and attempt to address these by emphasizing knowledge of community members and sharing information, resources and decision-making power. Israel et al offer the example that researchers learn from the knowledge and local theories of the community members, and community members acquire further skills in how to conduct research.
- Involves a cyclical and iterative process. PAR research involves trust-building, partnership development and maintenance in all phases of the research.
- Disseminates findings and knowledge gained to all partners. PAR research should disseminate information gained in respectful and understandable language that acknowledges all participants' contributions and their ownership of the knowledge produced. (Israel et al, 1998)
Institute staff is genuinely attuned and sensitive to the needs of people living with disabilities. More than half of the staff members have disabilities themselves or have family members living with disabilities.
Best practices are followed, ensuring accessibility for a wide range of access and functional needs, and adhere to rigorous human subject standards.
One of the core questions before beginning any research project at the Institute is whether the right issues are being investigated. Is the research relevant to the issues affecting people's lives? Projects address current issues in today's society – often tackling system-wide questions that truly affect the programs and systems serving people with disabilities.
A good example of this is the Institute's work on transition for high school youth with Intellectual and Developmental Disabilities. Transition Discoveries is a Developmental Disabilities Council funded project that aims to uncover the realities of the period of transition from school to adult life for individuals with disabilities. The project, driven by its advisory council made up of youth and adults with disabilities, family members, and experts in the field of transition, employs focus groups and interviews to capture the genuine hopes and dreams of youth with disabilities. The purpose of Transitions Discoveries is to inform the way transition is redefined and newly approached from a systems level.
The Institute serves a diverse group of consumers with disabilities: high school students with intellectual and developmental disabilities (ID/DD) or autism transitioning to adulthood; young toddlers and seniors with assistive technology (AT) needs, who may be deaf, hard of hearing, or visually impaired; family members of children with ID/DD or who are on the autism spectrum.
It would be virtually impossible to gather input from ALL these audiences. However, the Institute strives to increase the ways in which constituents share their experiences – boards, councils, training efforts, surveys, focus groups and more.
The Institute has a Consumer Advisory Council, which is composed of self-advocates, family members, and professionals, who represent a broad cross-disability group. Semi-annual yearly meetings provide the forum for open and honest dialogue about issues and advocacy concerns. In addition the Council plays a role in defining the Institute's five-year plan by taking part in and contributing to the strategic planning sessions. Finally, many Institute programs have discrete advisory boards, committees and groups that provide valuable input for staff to include in work and outreach.