Empowering Neurodivergent Adolescents and Those with I/Dd in Health Care: A Collaborative Approach to Access and Understanding of Medical Records

Abstract

As adolescents, particularly those with intellectual and developmental disabilities (I/DD) or neurodivergent diagnoses, transition into their teenage years, the complexities of managing medical records become increasingly pronounced. This article explores the implications of granting medical record access to these youths in light of the U.S. Health Insurance Portability and Accountability Act (HIPAA) regulations and state laws allow access at age 13. It examines how cognitive and executive functioning challenges can hinder comprehension of medical information, leading to feelings of anxiety and isolation. Additionally, the article highlights the critical role of parents and caregivers in supporting youth during this transition while navigating issues of guardianship and autonomy. By analyzing the disconnect between adolescents' rights to access their records and their capacity to interpret complex medical language, the article advocates for novel care models. Recommendations include providing simplified medical information, interactive health education programs, and cooperative privacy practices to support open communication and trust. This discussion emphasizes the importance of collaboration among adolescents, families, and healthcare providers to empower youth in their healthcare journeys while respecting their unique needs and autonomy.