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Intellectual Disability01:29

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Intellectual disability (ID) is a neurodevelopmental condition characterized by deficits in intellectual and adaptive functioning that manifest during the developmental period. This condition encompasses challenges in reasoning, memory, problem-solving, and learning, accompanied by impairments in everyday life skills, such as communication, self-care, and social interactions. Intellectual disability affects approximately 1% of the population in the United States, impacting an estimated 5...
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People with intellectual and developmental disabilities face exclusion in research. Systemic changes are needed to empower their inclusion in all research phases, from planning to dissemination.

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Area of Science:

  • Disability Studies
  • Research Ethics
  • Health Equity

Background:

  • People with intellectual and developmental disabilities (IDD) are frequently excluded from research participation and development.
  • Advocacy for inclusive research has grown, yet practical implementation remains limited.
  • Systemic barriers hinder the equitable inclusion of individuals with IDD in the research lifecycle.

Purpose of the Study:

  • To describe systemic changes implemented by a research group to foster inclusion of people with IDD.
  • To empower individuals with IDD to learn about and engage in research processes.
  • To identify ongoing efforts and strategies for advancing systemic change in inclusive research.

Main Methods:

  • Qualitative description of implemented systemic changes within a research group.
  • Focus on strategies to empower and support individuals with IDD in research engagement.
  • Analysis of ongoing work and potential pathways for broader systemic advancement.

Main Results:

  • Specific actions taken to create systemic changes for inclusive research were detailed.
  • The paper highlights the empowerment and support provided to individuals with IDD.
  • Ongoing work and future directions for systemic change are outlined.

Conclusions:

  • Systemic changes are crucial for the equitable inclusion of people with IDD in research.
  • Empowerment and support mechanisms are key to fostering engagement.
  • Continued effort is necessary to advance inclusive research practices and overcome existing barriers.