The EMPOWER study, led by Dr. Vanegas in collaboration with self-advocates and caregivers, aims to investigate and describe the healthcare transition readiness of racially and ethnically minoritized youth with intellectual and developmental disabilities (IDD) and their caregivers. This endeavor seeks to uncover gaps in knowledge and skills related to healthcare transition for these marginalized populations. The project’s objectives include forming a community advisory board, assessing healthcare transition readiness, identifying person-centered outcomes important to youth with IDD and caregivers, and evaluating the usefulness of healthcare transition readiness resources.


Anticipated outcomes encompass the recognition of critical gaps in knowledge and skills, the identification of person-centered outcome priorities, and the evaluation of the utility of existing resources. The project will produce outreach materials, culturally responsive outcome measures, comprehensive resource recommendations, and peer-reviewed research to support improved healthcare transition experiences for racially and ethnically diverse youth with IDD and their caregivers.

Project Goals

Increase knowledge and understanding on the state and experience of HCT among racially/ethnically minoritized youth with IDD and their caregivers

Increase knowledge and understanding of culturally relevant, person-centered outcomes for HCT prioritized by youth with IDD and their caregivers

Develop recommendations on how to increase cultural relevance, coherence, effectiveness, efficiency, impact, and sustainability of HCT resources

A chart describing the systemic, environmental, family and cultural factors in healthcare transition.



Project Overview

Study 1: Individual Interview and Assessment

  1. What are the levels of healthcare transition readiness and self-determination among youth with IDD from racially/ ethnically minoritized backgrounds?

Study 2: Focus Group or Interview

  1. What are the facilitators and barriers that youth with IDD and caregivers experience during healthcare transition?
  2. What is the utility of existing healthcare transition resources?

Participants and Eligibility

200 Youth with IDD & Caregivers


  • 12-26 years old
  • Intellectual or Developmental Disability
  • Identify from a racial/ethnic minority background
  • Live in the United States


  • 18+ years old
  • Primary caregiver or support person for youth
  • Live in the United States

Meet the EMPOWER Team


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