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2023 Data Profile: HCT Among Youth with ID/DD

This profile shares the latest data on prevalence of ID/DD among youth and highlights what proportion of youth with ID/DD receive HCT preparation guidance from their health care providers. Data comes from the National Survey of Children’s Health. This profile was created in partnership with the Child and Adolescent Health Measurement Initiative’s Data Resource Center for Child and Adolescent Health.

Infographic showing in 2020/21, how many youth ages 12-17 with ID/DD received HCT preparation guidance?

HCT Barriers for Youth and Young Adults with ID/DD (in plain language)

With input from the Center’s Youth Steering Committee, this compiled list of challenges highlights the feelings young people have about HCT. The challenges were identified through an analysis of academic journal articles and discussions with the YSC. A detailed explanation of methods and findings can be found in the Landscape Analysis below.

First page of HCT Barriers for YYA with ID/DD, with input from the YSC (in plain language)

HCT Barriers, Gaps, and Interventions for Youth and Young Adults with ID/DD: A Landscape Analysis

This landscape analysis examines gaps, disparities, HCT interventions, and resources available for youth and young adults with ID/DD, with a particular focus on underserved populations. This analysis was based on key informant interviews, literature reviews, and outreach to Family Voices and Title V programs.

First page table of contents of HCT Barriers, Gaps, and Interventions for Youth and Young Adults with Intellectual and Developmental Disabilities: A Landscape Analysis
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