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Individuals with neurodevelopmental disabilities (NDD) face healthcare barriers. The Supporting Access for Everyone (SAFE) Initiative established principles for equitable, accessible, and effective healthcare for youth with NDDs.

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Area of Science:

  • Health Services Research
  • Disability Studies
  • Pediatrics

Background:

  • Individuals with neurodevelopmental disabilities (NDD) experience significant healthcare disparities and barriers.
  • Existing healthcare systems often fail to meet the unique needs of youth with NDDs, leading to adverse outcomes.
  • There is a critical need for evidence-informed strategies to improve healthcare equity for this population.

Purpose of the Study:

  • To develop principles of healthcare delivery to improve equity for youth with neurodevelopmental disabilities (NDD).
  • To establish consensus-based recommendations for accessible, humane, and effective healthcare for individuals with NDDs.
  • To create a framework for enhancing the healthcare experiences of youth with NDDs.

Main Methods:

  • Convening a diverse consensus panel including professionals, caregivers, and adults with NDDs.
  • Conducting a public forum with presentations on research, clinical strategies, and personal experiences.
  • Utilizing nominal group technique during a consensus conference to derive recommendations.

Main Results:

  • Ten consensus statements (CSs) were established across five domains: training, communication, access and planning, diversity/equity/inclusion/belonging/anti-ableism, and policy/structural change.
  • An NDD Health Care Bill of Rights and Transition Considerations were developed.
  • The consensus statements affirm the right to accessible, humane, and effective healthcare for all individuals.

Conclusions:

  • The Supporting Access for Everyone (SAFE) Initiative provides a framework for improving healthcare equity for youth with NDDs.
  • The derived principles and recommendations can guide healthcare providers, policymakers, and systems.
  • Implementing these recommendations is crucial for ensuring that all individuals with NDDs receive quality healthcare.