Research must provide relevant information that is accessible to people with intellectual and other disabilities, their families, professionals, the general public, and public officials to help develop, sustain and improve services and supports which enhance quality of life for people with intellectual and other developmental disabilities.
It is The Arc New York’s position that:
- Research priorities set by funding sources, public policy setting bodies, and academic and professional associations must reflect the research needs and interests of people with intellectual and other developmental disabilities.
- In addition to causation and prevention research, priorities must promote and encourage basic and applied studies that focus on and help to enhance the quality of life for people with intellectual and other developmental disabilities.
- Data-based studies using relevant criteria must be used to assess the effectiveness of a program or service in achieving its desired outcomes, and/or to compare the relative effectiveness of alternative programs or services.
- Researchers must follow generally accepted professional standards of research design and reporting, including protection of the subject’s rights to informed consent, confidentiality, privacy and rights for health and safety and the use of Institutional Review Boards (IRBs) whenever required.
- Researchers must consider the cultural, ethnic, racial, geographical and other differences that affect people’s access to and ability to benefit from programs and services designed to serve them.
- Research must be used to identify best practices and issues involved in expanding policy and practices beyond pilot sites.
- Research must identify and support practical applications to address the daily needs of people with intellectual and other developmental disabilities and their families.
- Research must provide validated evidence-based results to identify and build public support for promising programs.
- Research studies are almost instantly available on the internet not only to professionals but also to interested members of the public who generally have limited tools for evaluating the findings and recommendations. Mindful of their expanded audience, researchers must be encouraged to present results and conclusions in an understandable, user-friendly manner.
- All appropriate communication venues must be used to disseminate research findings as well to help stakeholders acquire the basic knowledge and skills needed to become better-informed consumers of scientific information.