Access Living’s Guiding Research Principles and Expectations
Introduction
The independent living movement was built on the principle that people with disabilities are entitled to the same rights, options, and control over choices in their own lives as people without disabilities. Access Living seeks to partner in and support research which shares these principles through not only examining disability as a research topic, but by including the disability community as an integral part of the overall research process as much as possible. We are particularly interested in research that examines ways to improve service delivery and policy outcomes towards community integration and empowerment of people with disabilities and the communities in which they live.
There are many ways of meaningfully engaging the disability community in research. However, inclusive disability research remains critically underfunded—a consequence of neglect that has sidelined the needs of people with disabilities, particularly those from marginalized communities. When we overlook these gaps, we fail to realize solutions that benefit everyone.
To help guide potential research partners in their consideration for how to equitably and ethically engage the disability community in their research project with Access Living, we share the following principles. We will evaluate all of our research partnership requests based on merit, as well as our availability, capacity, and the degree to which the projects described mirror the values and interests reflected in our organization’s purpose, mission, and vision (see “Who We Are”) and the research principles, expectations, and requirements outlined below.
We invite all potential research partners to submit an application. In the application, please describe the project and how it reflects the interests of Access Living and the principles outlined here as much as possible.
Questions? Contact Jerome Palliser at jpalliser@accessliving.org or (312) 640-2113.
Guiding Research Principles
- A plan for ensuring that a variety of interests and perspectives of the disability community are represented in the design, implementation, and evaluation of research.
- People with disabilities from a variety of backgrounds are prioritized in the hiring process for any student or staff positions, assistantships, fellowships, internship or other paid opportunities that may become available for the research project.
- Coordinate with our communications team where appropriate.
Research Compensation
We prefer research partners who involve Access Living in the research budget-making process if it has not yet been set, and/or openly share the full project budget when available, to ensure the appropriate compensation of Access Living and all project participants. Access Living will evaluate each project individually. We will work closely with the principal investigator and project coordinator to finalize details regarding the cost to engage with Access Living on research. The cost to partner on research with Access Living is dependent on the type and intensity of the project. Some factors that are considered when assessing the cost include: number of research participants requested for project recruitment; extent of resources required from Access Living, including staff time, intensity and length of the project; data requests and reporting requirements, type of technical and administrative assistance requested from Access Living, the cost of needed accommodations, use of Access Living facilities and space, level of interaction requested with staff and consumers, etc.
Research Process Transparency
A plan to ensure that expectations of the research process and outcomes for everyone involved must be agreed upon in advance. This includes expected time commitment, providing reasonable advance notice of project deadlines, and an agreed upon plan for ensuring their timely completion. It is important to avoid last minute requests since they impose extra work on our part and potentially for our consumers.
Research Subject Consent and Protections
All studies must obtain Institutional Review Board (IRB) approval of record from an FDA approved Human Subjects consent board if deemed relevant and related to human subjects and; documentation of approval from the IRB must be provided to Access Living once acquired, before any project can be approved to begin implementation. Again, Access Living especially welcomes requests from potential partners that approach Access Living before a study is designed and/or submitted for funding. This may also include the need for a community collaboration letter from Access Living as part of the IRB approval process at other organizations.
Interested in partnering with us?
We’re excited to hear about your project. To begin the research application process to partner with Access Living, you can fill out our Research Interest Form at this link.
Questions? Contact Jerome Palliser at jpalliser@accessliving.org or (312) 640-2113.