Family Voices Resources

Transition to Adulthood for Persons with Childhood Onset Disabilities

Family Engagement and Leadership in Systems of Care (FELSC)

This article explains that transitioning to adulthood for individuals with childhood-onset disabilities involves unique challenges, especially when moving from pediatric to adult healthcare systems. It highlights the growing need for structured, early transition planning—often beginning around age 12—due to increasing survival rates and the complexity of managing long-term conditions. The authors emphasize the importance of coordinated, interdisciplinary support to address gaps in care, improve outcomes, and help youth develop independence and successfully navigate adult life.

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Transition to Adulthood for Persons with Childhood Onset Disabilities

aapmr.org

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Genetic Education Materials for School Success (GEMSS)

New England Regional Genetics Network

Toolkit

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Our Vision

All children, youth, and families, especially those with special health care needs and disabilities, experience their best health and quality of life.

Our Mission

Family Voices is a family-led organization that transforms systems of care to work better for all children and youth, especially those with special health care needs or disabilities. By putting families at the forefront and centering their leadership and lived expertise, we build a culture that includes everyone and fosters equitable outcomes.

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Family Voices
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In honor of
The Close the Gap campaign is funded by Dr. David Nichols and Mayme Boyd.
Visit familyvoices.org/closethegap to learn more.