Rangatahi / young adults with neurodevelopmental conditions (NDC) in Aotearoa New Zealand often face significant challenges when moving from child-based to adult services because the health, disability, and social care systems don't link up well.

The increasing number of people with NDC highlights the urgent need for a structured, culturally appropriate transition model that takes into account the lived-experience that an interdependence health and support model is the need and reality for most people with FASD—not independence. This approach must also address health literacy, which is the ability to find, understand, and use health information and services.

Due to the brain-based nature of FASD, these skills (such as managing medications, understanding complex instructions, and making appointments) require tailored, ongoing support that should be planned for during transition.

2024 University of Auckland study: Two-phase Delphi model

A recent study based at the University of Auckland involved a two-phase Delphi model, a technique for reaching a group consensus among experts through structured, iterative questionnaires and anonymous feedback. 

The study confirmed the urgent need for a structured, culturally responsive, person-centred transition model. It also set out a positive framework to guide future support, ensuring continuity of care and promoting autonomy for young people with neurodevelopmental needs. The study engaged 61 participants (including clinicians, educators and caregivers) to identify deficiencies in current transition services, inform development of a holistic transition tool, and define key domains for comprehensive transitional care.

Key Findings

The study:

• identified seven themes for service improvement including processes, resources, workforce, governance, and cultural responsiveness
• identified ten transition tool components: communication, health management, legal rights, daily activities, support networks, community integration, whānau and family involvement, cultural context, mental and spiritual wellbeing and sexual health
• revealed critical service gaps and opportunities for system-level improvement
• provided evidence to guide development of culturally grounded, person-centred transition planning.

Most importantly, it established a framework for a future pilot programme for testing and implementation of transition tools to establish continuity of care and autonomy for people with neurodevelopment conditions.

Click here to read this important study.