A Referral Guide for Paediatricians: Choosing a Complex Care Provider

A good paediatrician referral to a complex care provider starts well before the 18th birthday. It names one clinical contact and hands over a written health summary that the provider’s registered nurse can act on from the first shift. When you recommend a provider, choose one with nurse oversight, training specific to each client, and a clear plan for working with the young person’s GP and adult specialists.

More than 40% of Australian children live with at least one chronic medical condition, and many of them will need this handover. We write this as a registered NDIS provider in Cairns that supports adults with profound and complex disabilities. Our founders went through this same handover with their own child, who had Sanfilippo Syndrome, so we have seen it from both sides of the desk.

Why the move to adult care is where things break down

Paediatric care is built around continuity. One paediatrician often holds the whole picture for years, knows the family, chases missed appointments and keeps the specialists talking to each other. Adult care has no equivalent role. At the paediatric to adult transition, usually at 18, that picture breaks up across several services.

Australian research describes this as a “fall off a cliff” model. In interviews with young people, parents and health professionals across five states, researchers found that care drops away between the last paediatric appointment and the first adult one. Adult services usually don’t follow up missed appointments, paediatric and adult records sit on separate systems, and the handover is often a short letter. One adult health professional described the move from the children’s hospital to adult care as “almost like going from flying business class to economy class” (Nobilo et al., 2025).

For young people with profound disability, the drop is steeper. Many have conditions that do not fit neatly into one adult specialty. They may live with a neurological disability, epilepsy, feeding needs through a PEG and reduced mobility all at once. In the clinic, that means several specialists. At home, it means a family carer who has quietly become the care coordinator, the medication manager and the overnight observer, often for many years.

A complex care provider will not replace the paediatrician. What it can do is give the day-to-day support around the young person a fixed point: a trained team that knows them, follows their health plans, notices changes, and keeps the family, GP and specialists informed.

Three referral pathways, and how they connect

Most guidance treats health referrals and disability support as separate topics. From the family’s side they are one problem. When you plan the handover, think in three parallel tracks: the medical referral into adult services, any care coordination support while the young person is still eligible, and the NDIS-funded daily support around them.

On the medical side, Queensland Health’s Clinical Prioritisation Criteria include a General Medicine category for complex paediatric patients moving to adult services. It covers congenital disorders and conditions acquired in childhood or adolescence that have needed ongoing review. Referrals are sorted by whether the condition is potentially unstable or stable. Category 1 aims for an appointment within 30 calendar days, Category 2 within 90 calendar days, and there is no Category 3 (Queensland Health, 2025).

On care coordination, Children’s Health Queensland’s Nurse Navigator service accepts Queensland children and young people aged 16 and under with complex healthcare needs. Young people aged 17 and 18 can use it only if they are already under the hospital’s care (CHQ, 2023). That cut-off is easy to miss. A referral made at 17 for someone who isn’t already a patient may simply be too late.

The service works with GPs, hospitals, Aboriginal and Torres Strait Islander Medical Services and NGOs. Where needed, it gives families an integrated health care summary, and it coordinates through local nurse navigators for regional and remote families. Referrals come from a paediatric specialist, hospital medical officer, nurse or allied health professional (CHQ, 2023). If your patient qualifies, refer early. That integrated summary is one of the most useful documents a family can hand to an adult care team later on.

The disability support track works differently. There is no formal medical referral into an NDIS provider. The participant, or their nominee or guardian, chooses the provider, usually with help from a support coordinator. Your role is to recommend, to provide information with consent, and to make sure the provider gets what it needs to deliver safe high-intensity supports.

Role	What they hold after 18	What helps them most from the paediatrician
GP	Overall medical coordination, prescriptions, referrals	Full discharge summary, current medication list, specialist contacts
Adult specialist (via Queensland Health CPC)	Condition-specific review and management	Referral that meets CPC requirements, treatment history, stated reason for referral
Nurse Navigator (if eligible)	Care coordination across services	Early referral, ideally before 16
Support coordinator	NDIS plan implementation and provider choice	Functional information and current support needs
NDIS complex care provider	Daily support, high-intensity care at home and in the community	Health management plans, baseline observations, family knowledge of the person

What a paediatrician referral to a complex care provider should contain

The Queensland Health criteria are useful even outside the hospital system because they spell out what a receiving service needs. A referral to adult services will be returned if it lacks the medical history, other conditions and medications (including discharge summaries or outpatient letters from the paediatric service), details of past treatments and how well they worked, a clear statement of what the specialist needs to deal with, and details of any decline in function or thinking. The same criteria list patient or carer support services, including the NDIS and Disability Services Queensland, as useful extra information (Queensland Health, 2025). That field is where you can record a complex care provider’s involvement, so the adult team knows who is with the person every day.

A disability provider needs a different emphasis. A specialist wants to know what to manage. A support team wants to know what normal looks like for this person, so it can see when something changes. With the participant’s or guardian’s consent, the most useful handover to a complex care provider includes:

• a current health summary with diagnoses, medications and allergies, plus the name of the treating doctor for each health management plan
• the written plans for any high-intensity supports, such as PEG feeding, seizure management or wound care, signed off by the treating team
• what a good day and a bad day look like, including how the person communicates pain, distress and preference
• the decline in function or cognition you have seen over time, which matters most for degenerative conditions
• a contact list for every service involved, with the person the family trusts most marked clearly.

None of this asks the provider to make clinical decisions. Clinical decisions stay with the GP, specialists and allied health team. The provider’s job is to deliver supports safely according to those plans, under registered nurse oversight, and to report back promptly when something changes. Tell the receiving services about changes too. A condition that gets worse can change how urgently a referral is handled, so pass that on as soon as it happens rather than waiting for the next letter.

We also suggest a small practical step to every family: keep your own folder. Paper or digital, it should hold every discharge summary, outpatient letter and plan. Records do not travel well between paediatric and adult systems, and the family folder is often the only complete history that survives the move.

How to judge a provider before you recommend one

Paediatricians are often asked “who would you trust?” The question deserves a better answer than a directory list. When we talk to referrers, the providers worth recommending share a few traits, and you can test for each of them in one phone call.

Four questions will tell you most of what you need to know:

• Who oversees the high-intensity supports? Any provider delivering PEG feeding, seizure monitoring or wound management should be able to name the registered nurse responsible, explain how that nurse trains and checks the support workers, and describe what happens when a support worker is unsure. Vague answers here are a reason to keep looking.
• How are staff trained for this specific person? A worker who has done a seizure management course is not the same as a worker who has been trained on one person’s seizure plan, warning signs and recovery pattern. Generic competency is not enough.
• What does continuity look like? Families of adults who need 1:1 support for 12 to 24 hours a day want to know who will walk through the door, and how many new faces they should expect in a month.
• How does the provider work with allied health? Occupational therapy, physiotherapy, speech therapy, dietetics and psychology input should shape the daily routine, not sit in a report on a shelf.

A referral is only as good as the first week of care that follows it.

At Advanced Disability Management, these questions shape how we work. Our high-intensity supports run under registered nurse oversight. We hold regular training workshops specific to each client, so the team learns the person, not just the procedure. Our care team brings a strong commitment to treating clients like family, and families tend to notice that warmth early on. We work alongside the participant’s occupational therapist, physiotherapist, speech pathologist, dietitian and psychologist. The aim is to give family carers genuine time away from their caring role, knowing the person they love is with people who understand them.

We would also gently suggest asking any provider, including us, what it cannot do. Honesty about limits is a good sign. A provider that says yes to everything before reading the health plans is telling you something.

Far North Queensland changes the referral

Referral pathways look tidy on a Brisbane flowchart. In Cairns, the Tablelands, Cape York and the Torres Strait, they run into distance.

The same national research found that the GP often ends up holding everything together after paediatric care ends, and many participants said GPs aren’t resourced for that load. Rural and remote areas face severe shortages, and people often travel long distances for specialist treatment. Participants suggested starting the transition conversation by about 16 or 17, and earlier for young people with several complex conditions or a disability (Nobilo et al., 2025). One parent’s comment from the study will sound familiar to many North Queensland families: “We were told, on many occasions, get yourself a good GP. Well, that’s easier said than done.”

For a paediatrician in Cairns or Townsville, that changes the referral in three ways. First, confirm the adult GP before discharge, not after, and send them the full summary directly. Second, assume some specialist care will still be in Brisbane, and make sure the support provider knows the travel pattern. Supporting a participant on a flight or long drive to a specialist appointment is part of the job, and it goes better when the provider plans for it. Third, choose a provider with a local team, so the people who meet the young person at home are the same people who stay.

We operate across Cairns, Townsville and Brisbane, which means we can often support a participant at home and stay in contact with the team they see in Brisbane. That continuity can reduce the number of times a family has to retell the whole history, a quiet relief that families tend to value more than any service description.

The NDIS side: what is changing for young adults now

Disability support for an adult with complex needs runs through their NDIS plan, and the planning process is changing. The new definition of NDIS supports is already in place, and new and reassessed plans now include funding periods (NDIA, 2026). Families moving from a child’s plan to an adult’s plan may see these features for the first time at the same moment they lose their paediatrician, so explain early that the plan will look different.

The bigger shift is still ahead. The NDIA is introducing support needs assessments from April 2027, developed with the University of Melbourne and the Centre for Disability Studies, as part of a new way of planning (NDIA, 2026). The NDIA’s stated aim is to reduce the cost and effort of gathering evidence. For paediatricians, this means the detailed functional reports you write today may carry less weight in future planning than they once did. Your clinical documentation still matters for the health teams and support providers who rely on it, but families should not expect any single report to decide their funding.

We say this plainly because families deserve accuracy: funding decisions belong to the NDIA. No provider, paediatrician or support coordinator can promise what a plan will include. If a family is unsure about a plan decision or wants to request a review, point them to their support coordinator, their NDIA planner or an independent disability advocate. Those are the right people to advise on reviews and appeals.

A practical sequence from 16 to the first adult shift

Pulling it together, the handover that tends to work best follows a steady sequence, not a scramble in the final month.

Around 16, raise the transition with the family and the young person, to whatever degree they can take part. If they are eligible, refer to the Nurse Navigator service before the age cut-off closes. Start the family folder. Between 16 and 17, identify the adult GP and the adult specialties that will take over each condition, accepting that some may move earlier than others. This is also the time for the family and support coordinator to start talking to complex care providers, while there is no pressure. Families should also know that parents do not automatically keep decision-making authority once their child turns 18. Some will need a guardianship or administration order through QCAT, or other formal arrangements, so they can keep consenting to referrals and you can keep sharing information. Suggest they seek advice from the Office of the Public Guardian or QCAT well before the 18th birthday.

In the final year, write the referrals into adult services so they meet the Queensland Health criteria the first time. With consent, share the health management plans and a description of the person’s baseline with the chosen provider, so its registered nurse can arrange client-specific training before support starts. If possible, allow some overlap: a few shifts where the family and the new support team work side by side. That overlap is where a support team learns the small things no letter captures, such as how this person likes to be repositioned, or the change in breathing that comes before a seizure.

After 18, keep one line open. A short note to the GP and the provider in the months after discharge, or a final appointment that confirms everyone is connected, can make a real difference to how supported the family feels. Families remember the clinicians who stayed with them right up to the handover.

If you are a paediatrician, GP, support coordinator or family member weighing up options for a young adult with complex needs, we would be glad to talk it through with you. Call Advanced Disability Management on 0425 168 053, email [email protected], or use the contact page on our website. We are happy to just listen and answer questions, with no obligation to go further.