Transition from paediatric to adult care of an adolescent with developmental disability

For people in their late adolescence or early adulthood, paediatric services are no longer appropriate. Ideally, a general practitioner (GP) (or GP practice) will collaborate with a paediatrician in the person’s care during childhood, and become the primary general clinician for the person in adulthood. This transition should be a coordinated process that begins in early adolescence (eg around 14 years) to promote continuity of care.

The GP’s role in the care of an adolescent with disability includes:

  • supporting the adolescent and their parents and siblings during transition from familiar (paediatric) to new (adult) practitioners and services
  • liaising with the paediatrician regarding health management and medical records
  • conducting routine and preventive health care
  • developing and maintaining a trusting relationship so it is easier for the adolescent to raise personal concerns and establish more independence in healthcare decision making
  • providing family advice and support in managing adolescent behaviours
  • advocating for the adolescent and their family, and helping with paperwork required for service transitions (eg for National Disability Insurance Scheme [NDIS], disability support pension)
  • enquiring about siblings’ wellbeing and offering separate appointments or referring them to a counsellor or psychologist, if appropriate.

It may be helpful for the paediatrician and GP to discuss differences in approach to intensive care admissions in paediatric versus adult hospitals. This is especially important for parents whose adolescent has profound disability and was frequently admitted to intensive care in the paediatric setting. Advance care planning and end-of-life care for people with developmental disability is discussed here.

Transition resources are available to support people with developmental disabilities and facilitate transition from child to adult healthcare systems, including: