- Typically listed as sole or co-author
- Papers about processes or methods	
  - Typically found in peer reviewed literature
- Papers that report findings
  - Less common
  - More likely to be located in unpublished research reports

Cedarville University

Individuals may:
- Give advice to research team about what to do 
 - Lead and control research
- Work together as a group with different jobs based on individualized interests and skills

How Individuals with Intellectual Disabilities are Involved in Inclusive Research

- Support of self-advocacy in the ID community is limited and still developing. 
- This may restrict the number of individuals who can participate as many individuals may lack the skills or experience to partake. 
- It is dangerous to assume there is one perspective from all individuals with ID. 
- There may also be a limited relationship between people with ID and the government or other organizations facilitating this research. 


Limitations of Inclusive Research and Sampling of Persons with ID

A lot of the research that we do have is inaccessible 
- Especially before the digital age


Inaccessibility & Availability of Research Involving Individuals with ID


Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing Inclusive Research with People with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12. https://doi.org/10.1111/jar.12083 

Conceptualizing Inclusive Research with People with Intellectual Disability


Broad Approaches to Inclusion of people with Intellectual Disability in Research

Training and preparation for data collection

Strategies include:
 -   Turn taking
 -   Utilizing scripts
 -   Line by line coding
 -   Group based thematic analysis
 -   Find interesting bits
 -   Decipher what fits into transcript

 Instances in which Individuals with ID are in control in research


It is discriminatory to generalize the abilities of the ID community to a select few individuals. For example, one would not assume that all amputees have the same perspective. They have different life experiences so they will not all have the same opinion. So why should we assume that people with a broad spectrum of abilities and experience resulting from their ID would have the same perspective?

ID Perspective and Research

Studies that utilize the advisory of individuals of ID may be skewed in that the input they are receiving is not comprehensive nor does it accurately reflect the opinions of the entire ID population. Even though it is convenient to work with the same group because they are the most willing, it does not guarantee a good sample. This is a common occurrence for studies involving small minority populations.

Convenience Sampling & Persons with ID

	It is difficult for those who experience a lesser impairment to represent individuals with a greater level of impairment. Therefore, there needs to be representation for those with severe impairments for accurate representation.

Proxy Representation in Advisory Boards

	If we do not have access to these reports, then this can negatively impact future studies. If there is no precedent for this kind of research, then it explains why there is a lack of proper protocol and regulations for the involvement of individuals with ID.


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