Health Management, Home And Community, Occupational Therapy, Paediatrics & Family
Supporting the Paediatric to Adult Services Transition: 5 Essential Strategies for Occupational Therapists
The paediatric to adult services transition marks one of the most significant shifts a young person with disability, chronic illness, or developmental differences will face. For many, childhood is shaped by a rich network of support. Paediatric occupational therapy often sits at the centre of that network, offering not just direct intervention but coordination, advocacy, and a consistent therapeutic relationship that can span years.
Then, somewhere between the ages of 16 and 18, that network begins to change. Services that were once seamlessly arranged by clinicians and coordinated with schools and families become the responsibility of the young person themselves. The shift from paediatric to adult occupational therapy is not simply a change of service provider. It is a fundamental transformation in how care is accessed, delivered, and experienced.
For occupational therapists working across both paediatric and adult settings, understanding this transition is essential. The evidence consistently highlights that the paediatric to adult services transition is a period of significant vulnerability and navigating the paediatric to adult services transition without structured support can have lasting consequences
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Two Different Worlds: How Paediatric and Adult Service Models Differ
Paediatric occupational therapy is characterised by what is often described as a wrap-around model of care. Services are typically proactive, family-centred, and coordinated. The therapist frequently liaises with schools, other health professionals, and the family unit as a whole. Goals are set collaboratively, and the family plays a central role in carrying over therapeutic strategies into everyday life. Regular reviews, familiar faces, and long-standing therapeutic relationships provide a sense of continuity and safety that many families come to rely on.
Adult occupational therapy operates within a different framework. Services are generally more episodic and individually focused, reflecting an appropriate emphasis on autonomy and self-determination for adults. The expectation is that the person accessing services will identify their own needs, initiate referrals, manage appointments, and advocate for themselves. While this model suits many adults well, for a young person stepping out of a structured, family-centred paediatric environment for the first time, the shift in expectations can feel significant. The continuity of a long-standing therapeutic relationship gives way to a new dynamic, and the young person is asked to take on a much greater degree of responsibility for managing their own care.
Clough, Culnane, and Loftus (2024) examined this transition directly in a qualitative study of young adults with cerebral palsy who had received services through The Royal Children’s Hospital Melbourne. Their findings highlighted that participants valued dedicated transition support and that a well-coordinated transfer of care played an important role in reducing distress and promoting continuity. Critically, many participants described a sense of loss when moving away from the paediatric environment, not just in terms of services, but in terms of the relationship with their treating team.
The Experience of Young People and Families During the Paediatric to Adult Services Transition
The lived experience of transitioning from paediatric to adult services is complex and can be distressing for both young people and their families. Research consistently identifies several recurring themes: a sense of abandonment, a loss of expertise, and a system that feels ill-equipped to meet the needs of young adults.
Thompson, Bölte, Falkmer, and Girdler (2018) conducted focus groups with Australian parents of young people with Autism Spectrum Disorder and found that families experienced the transition to adult life as a period of profound uncertainty. Parents described feeling that adult services lacked the depth of understanding present in paediatric settings, particularly in relation to the nuanced presentation and communication needs of their children. They reported that the burden of coordination, which had previously been shared with clinicians, fell almost entirely on their shoulders once paediatric services ceased. The desire to be understood, both by services and by the broader community, emerged as a central unmet need.
For young people with intellectual disability, the paediatric to adult services transition carries additional complexity. Mogensen, Drake, McDonald, and Sharp (2024) undertook a co-designed qualitative study with young Australians with intellectual disability, exploring their experiences of life after school in the context of the National Disability Insurance Scheme (NDIS). Participants described a sense of being in a perpetual state of transition, caught between a school system that provided structured daily support and an adult disability sector that struggled to offer equivalent continuity.
Many expressed a desire for meaningful participation in employment, education, and community life, yet found that the supports available to them were either insufficient or poorly matched to their goals. One participant’s sentiment, captured in the study’s title (“I want to do more in life than just…be a disability person”), speaks to a broader aspiration: to be seen as a whole person, not simply a recipient of disability services.
Gaps in Service Continuity: Where the System Falls Short with the Paediatric to Adult Services Transition
Despite growing awareness of the challenges associated with the paediatric to adult transition, significant gaps in service continuity persist across the Australian health and disability landscape.
One of the most commonly identified gaps is the absence of a formal transition plan. While dedicated transition programs exist in some tertiary paediatric centres, such as the Transition Support Service at The Royal Children’s Hospital Melbourne documented in the work of Clough et al. (2024), these programs are not universally available. Young people in regional and rural areas, or those whose conditions fall outside the diagnostic criteria for hospital-based transition clinics, may receive no structured support whatsoever. They and their families are expected to navigate the complexity of adult services without minimal guidance.
A second significant gap relates to the timing of transition planning. Best practice frameworks recommend that transition planning begin at least two to three years before the young person is due to exit paediatric services. In practice, however, conversations about transition are often deferred until the final months of paediatric care, leaving insufficient time to build skills, explore options, and establish new therapeutic relationships. Clough et al. (2024) found that participants who had experienced earlier and more structured preparation reported smoother transitions, underscoring the importance of proactive rather than reactive planning.
The NDIS has introduced both opportunities and complications for young people navigating this transition. While the scheme has the potential to provide individualised, flexible funding that follows the person into adulthood, the shift to self-directed planning places considerable demands on young people and their families. Mogensen et al. (2024) found that young people with intellectual disability often struggled to translate their goals and aspirations into the bureaucratic language required to access NDIS supports. The expectation of self-advocacy within a complex administrative system sits in stark contrast to the supported, guided environment of paediatric care.
There is also a documented loss of therapeutic expertise at the point of transition. Paediatric occupational therapists develop deep knowledge of their clients over years of intervention. When a young person exits paediatric services, that knowledge is rarely transferred in a meaningful way to the receiving adult service. Discharge summaries are often brief and clinically focused, failing to capture the nuanced understanding of the young person’s strengths, communication preferences, and functional goals that has been built over years of therapeutic relationship.
What Transition Programs Are Doing Well
Despite the gaps, there are promising examples of transition programs and approaches that demonstrate what good practice looks like in the paediatric to adult services transition.
Dedicated transition clinics within tertiary paediatric hospitals represent one model. These programs typically involve a multidisciplinary team working with young people and families over an extended period, preparing them for the shift to adult services through education, skills development, and supported handover. Clough et al. (2024) found that young adults who had access to such a program at The Royal Children’s Hospital Melbourne reported greater confidence and a stronger sense of being supported during transition than those who had not. The presence of a named transition coordinator, someone who could act as a consistent point of contact and advocate across the system, was identified as particularly valuable.
Peer support and mentoring have also emerged as effective components of transition programs. Young people who have successfully navigated the transition to adult services can offer practical knowledge and emotional reassurance that clinicians cannot easily replicate. Thompson et al. (2018) noted that parents of young people with autism placed significant value on connection with others who had shared similar experiences, highlighting the importance of community as well as clinical support.
Co-design is increasingly recognised as a principle that should underpin transition service development. Mogensen et al. (2024) adopted a co-design methodology that positioned young people with intellectual disability as active contributors to the research process. Their findings reinforce the argument that transition programs are most effective when they are shaped by the people they are designed to serve. Occupational therapists have a natural role in facilitating this kind of participatory approach, given the profession’s commitment to client-centred practice.
5 Practical Strategies for OTs Supporting the Paediatric to Adult Services Transition
Whether working in a paediatric setting preparing a young person for transition, or in an adult service receiving a new client, occupational therapists are well placed to make a meaningful difference in the paediatric to adult services transition. The following strategies are grounded in the evidence and reflect the lived experience of young people and families.
1. Begin Transition Planning Early
Transition conversations should begin well before the young person is due to exit paediatric services. Introducing the concept of transition at age 14 or 15, even in a general sense, allows time for skills development, goal setting, and gradual preparation. This early engagement also signals to the young person that transition is a process, not an event.
2. Build Self-Advocacy and Self-Management Skills
One of the greatest challenges young people face in adult services is the expectation that they will manage their own care. Occupational therapists can support this by deliberately building self-advocacy skills into intervention from an early stage. This might include supporting young people to understand their diagnosis, articulate their functional needs, and practise communicating with health professionals in a supported environment.
3. Create Meaningful Transition Documentation
A comprehensive transition summary that goes beyond clinical diagnoses to capture the young person’s strengths, communication style, functional goals, and preferred approaches to therapy can significantly improve continuity of care. This document should be developed collaboratively with the young person and their family and shared with the receiving service in a timely manner.
4. Involve Families Appropriately
While the goal of the paediatric to adult services transition is to support young people toward greater independence, families often continue to play an important role in adult life, particularly for those with higher support needs. Occupational therapists should engage families in transition planning in a way that respects the young person’s growing autonomy while acknowledging the ongoing contribution of their support network. Thompson et al. (2018) highlighted that families frequently felt excluded from adult service systems, a dynamic that can undermine the young person’s outcomes.
5. Advocate for Systemic Change
Individual clinical strategies are important, however, they are insufficient in isolation. Occupational therapists have a responsibility to advocate for improved transition pathways at a systemic level. This includes calling for earlier and more universal access to transition planning, improved information sharing between paediatric and adult services, and greater investment in programs that support young people and families through this critical period.
Looking Ahead: The Future of Paediatric to Adult Services Transition Support in Australia
The Australian Government’s Thriving Kids program, which is scheduled to commence from October 2026, represents a significant policy investment in early childhood supports for children with developmental needs. While this initiative focuses on younger children, it reflects a growing recognition that early intervention and continuity of support across developmental stages are essential for long-term outcomes. For occupational therapists working in the transition space, this policy direction offers an opportunity to advocate for equivalent investment in the adolescent-to-adult transition period, a phase that has historically received considerably less attention.
The evidence is clear that the paediatric to adult services transition is not simply a logistical challenge. It is a period of profound change that touches on identity, independence, belonging, and access to participation. Young people and families deserve a system that prepares them well, transfers knowledge effectively, and remains responsive to their needs as they move into adulthood. Occupational therapists, with their holistic, person-centred lens, are uniquely positioned to lead that work.
The Paediatric to Adult Services Transition: Key Takeaways
The paediatric to adult services transition is one of the most critical and under-resourced periods in a young person’s therapeutic journey. For occupational therapists, understanding the structural differences between paediatric and adult service models, the lived experience of young people and families, and the evidence around what works is the foundation of effective transition support.
The paediatric to adult services transition does not have to mean falling off a cliff. With early planning, deliberate skill-building, meaningful documentation, and systemic advocacy, OTs can make this period one of growth rather than disruption. The five strategies outlined in this blog are a practical starting point.
If you’d like support navigating transition planning for your clients, or want to discuss how our team approaches the paediatric to adult services transition, we’d love to hear from you. Contact us here.
References
Clough, I., Culnane, E., & Loftus, H. (2024). Exploring the transition experiences of young adults with cerebral palsy. Child: Care, Health and Development, 50(1), e13186. https://doi.org/10.1111/cch.13186
Mogensen, L. L., Drake, G., McDonald, J., & Sharp, N. (2024). Young people with intellectual disability speak out about life after school: “I want to do more in life than just…be a disability person.” Journal of Intellectual & Developmental Disability, 49(2), 121–133. https://doi.org/10.3109/13668250.2023.2245276
Thompson, C., Bölte, S., Falkmer, T., & Girdler, S. (2018). To be understood: Transitioning to adult life for people with Autism Spectrum Disorder. PLoS ONE, 13(3), e0194758. https://doi.org/10.1371/journal.pone.0194758
