From Paediatric to Adult Services: The Cerebral Palsy Transition Nobody Prepares You For

For most of childhood with cerebral palsy, there is a team.

A paediatrician who’s known the family for a decade. A physiotherapist who’s watched a child grow into their body. An OT who specified three wheelchairs across fifteen years. A clinic that sends appointment reminders. People who, collectively, hold the whole picture without anyone having to assemble it.

Then somewhere between sixteen and eighteen, depending on the state and the service, it ends.

Not gradually. Usually with a final appointment, a discharge letter, and a suggestion to see a GP. The team that held everything together disperses, and nothing quite replaces it.

People in the sector call this the transition cliff, and the term is accurate. It’s one of the best-documented problems in cerebral palsy care in Australia and one of the least solved. This guide is about getting across it deliberately rather than falling off it.

Why the cliff exists

It isn’t anyone’s failure in particular. It’s structural.

Cerebral palsy has historically been understood and funded as a childhood condition. Early intervention is where the developmental window sits, where the research money went, and where services were built. Paediatric CP clinics exist in most major centres because somebody decided decades ago that children with CP needed coordinated multidisciplinary care.

Nobody made the equivalent decision for adults. So there is frequently no adult equivalent of the paediatric CP clinic — not a worse version, simply nothing in the same shape.

The practical result is that the coordination function the paediatric team performed invisibly becomes the person’s own job, or their family’s, usually without anyone mentioning that the handover has happened.

What actually ends

It varies by state and service, but broadly:

The paediatrician. Usually the central figure, and usually the first to go. Paediatric care generally ends somewhere between 16 and 18.

The CP clinic. Where a coordinated multidisciplinary clinic existed, adult access typically ends with paediatric care.

School-based therapy. Physiotherapy, OT and speech pathology delivered through school stop when school does. For many young people this is the bulk of the therapy they’ve ever had.

School transport and the structure of a school day. Not a clinical service, but the loss of routine and the logistics that came with it matters more than people expect.

The automatic review cycle. Paediatric services tend to review on a schedule. Adult services generally respond to presenting problems. Nobody books an annual appointment to see how you’re going.

The person who knows the history. Often the biggest loss. Someone had a decade of context. Their replacement has a referral letter.

What should replace it, and who builds it

The honest answer is that you build it, with help. Here’s the shape of what’s needed.

A GP who will stay

The single most important relationship in adult CP care, and worth choosing deliberately rather than inheriting.

What to look for: someone willing to learn about adult cerebral palsy, who takes long appointments, who will write referrals and chase them, and who intends to be there in ten years. Continuity beats brilliance here by a wide margin.

Two things to set up early:

A GP Management Plan and Team Care Arrangement. These Medicare items support coordinated care for chronic conditions, including a number of subsidised allied health sessions per year. They don’t replace NDIS-funded therapy, but they sit alongside it, and a surprising number of adults with CP never have one.

A health summary the GP actually holds. Diagnosis, classifications, surgical history, current medications, equipment, allergies, clinical plans, treating specialists. Build it once, update it annually, and give copies to everyone who needs one. In the absence of a paediatric team, this document is the continuity.

A rehabilitation physician, if you can find one

Rehabilitation physicians are the closest thing to a specialist for adult cerebral palsy. They can coordinate the musculoskeletal picture, spasticity management, functional review and equipment decisions that otherwise get handled in pieces by people who don’t talk to each other.

They’re not evenly distributed, particularly outside major cities. Ask your paediatrician before discharge whether they can refer directly to one, and ask your GP to keep looking if the first attempt fails. It’s worth persisting.

Allied health as maintenance, not crisis response

This is the central reframe of adult CP care.

In childhood, therapy is developmental — building skills as the body grows. In adulthood, the purpose shifts to maintaining function and preventing deterioration, which is less visibly dramatic and considerably more important over a lifetime.

• Physiotherapy for strength, range, transfers, pain management and preventing the musculoskeletal problems that accumulate
• Occupational therapy, reviewed periodically, for equipment, home set-up and task adaptation
• Speech pathology where communication or swallowing are relevant, including AAC review
• Dietetics where nutrition or swallowing affect intake
• Psychology, which almost nobody arranges and many people need

Specialist review for specific issues

Depending on the picture: orthopaedics for hips and spine, continence services, respiratory, neurology where epilepsy is present, pain services.

The timeline: what to do when

Transition planning works far better started early. The widely recommended approach is to begin around age 14, which sounds absurdly early and isn’t.

From around 14

Start talking about it as a normal thing that will happen, rather than an ending. Begin involving the young person directly in appointments — asking them questions, letting them answer, explaining what things are for. The goal is that by eighteen they understand their own condition and can describe it to a stranger.

Around 15 to 16

Ask the paediatric team directly: what is your transition process and when does my care end here? Services vary enormously and some have formal transition programmes. Many don’t. Either way, knowing the date changes the planning.

Start building the health summary. Ask the paediatrician for a comprehensive discharge summary rather than a one-page letter. Request copies of key reports — recent OT assessments, surgical notes, classification records, equipment prescriptions.

Find the GP. Before you need them. Start seeing them for routine things so a relationship exists.

Around 16 to 17

Get referrals written while the paediatric team is still involved. A referral from a paediatrician who has known someone for fifteen years carries more weight and context than one from a GP who met them last month. Ask for referrals to a rehabilitation physician and any specialists likely to be needed.

Review the NDIS plan with transition in mind. The plan written for a schoolchild won’t fit an adult. Therapy that was delivered through school needs to be funded directly. Supports that family provided may need to become paid. This is also the point to get adult-appropriate goals into the plan — work, study, independent living, community participation.

Have the housing conversation. Not necessarily to act on it, but to open it. Our guide on supported independent living with cerebral palsy covers what that eventually involves.

Around 17 to 18

Hold a transition meeting if the service offers one. Paediatric team, young person, family, new GP where possible, support coordinator. One room, one handover.

Sort the legal and decision-making questions. At eighteen, the young person becomes a legal adult and makes their own decisions. Where capacity is affected, formal arrangements may be needed — and these vary by state. Where capacity isn’t affected, make sure everyone understands that the young person now consents to their own care, which is a shift some families find harder than expected.

Check what else changes at 18. Disability Support Pension, Medicare card arrangements, consent, and in the NDIS, eligibility for supports like supported independent living which generally applies from 18.

After 18

Book the first adult appointments quickly. The highest-risk period is the gap between paediatric discharge and adult services engaging. Six months of nothing is where function quietly slips.

Set up an annual review rhythm yourself, since nobody else will. One appointment a year with the GP specifically to review the whole picture rather than a presenting problem.

What to get in writing before paediatric care ends

The single most useful transition task, and one that costs nothing but a request made at the right time.

Ask the paediatric team for a comprehensive handover document rather than a standard discharge letter. What it should contain:

• Diagnosis and classification levels — all of them, with dates. GMFCS, and where relevant MACS, CFCS, EDACS and VFCS. Our guide to the classification systems explains what each covers.
• Surgical history. Dates, procedures, outcomes. Orthopaedic surgery in childhood is common in CP and the details matter twenty years later.
• Current and past medications, including anything for spasticity, epilepsy or pain, with what has been tried and what the response was.
• Equipment history and current prescriptions. Wheelchair and seating specifications, orthoses, AAC devices, hoists and slings.
• Clinical plans — mealtime management, seizure management, bowel care, positioning — current versions, signed.
• Baseline function. A description of what the person could do at discharge, which becomes the reference point for noticing change later.
• Known problem areas and what to watch for. Hips, scoliosis, respiratory, swallowing — whatever this particular team has been monitoring.
• Referrals already made, with contact details.

Request this three to six months before the final appointment, not at it. Teams need time, and a document assembled under pressure on the last day will be thinner than one prepared properly.

Store it somewhere you’ll find it, give a copy to the new GP, and keep it updated. In the absence of a paediatric team holding the history, this document becomes the continuity.

State variation, and why advice from elsewhere may not fit

Transition arrangements differ substantially between states and territories, and between individual health services within them.

The age at which paediatric care ends varies. Some services transition at 16, some at 18, some negotiate case by case. Some children’s hospitals run formal transition programmes with dedicated coordinators; others discharge with a letter.

What exists on the adult side varies even more. Some states have adult rehabilitation services with CP experience; in other areas there is effectively nothing equivalent and a GP coordinates alone. Specialist clinics for adults with CP exist in a handful of places and not in most.

Equipment schemes, continence programmes and community health services are all state-run and all differ in eligibility and waiting times.

Two practical consequences. Advice from a friend interstate may not apply to you — the principles transfer, the available services often don’t. And it’s worth asking the paediatric team specifically what exists locally for adults, because they will know, and because the answer determines how much you need to build yourself.

Regional and rural families face this harder. Roughly 30% of children with CP in Australia live outside major cities, and the thinness of adult services is felt most acutely there. Telehealth has improved access to some specialties; equipment review and hands-on therapy remain difficult. Planning further ahead, and being willing to travel for key appointments, is often the realistic response.

The things that go wrong

Nobody tells you the date. Families discover paediatric care has ended when they try to book an appointment. Ask explicitly, in writing.

Therapy stops and doesn’t restart. School-based therapy ends, nothing replaces it, and twelve months pass. This is the most common and most consequential failure, because deconditioning and contracture progression don’t wait.

The NDIS plan doesn’t change. A plan built around a schoolchild’s life carries into adulthood unchanged. No employment supports, no independent living goals, therapy funded at childhood levels for an adult body.

The young person isn’t involved. Fifteen years of appointments where professionals spoke to the parent produces an eighteen-year-old who can’t describe their own condition. This is fixable but it takes deliberate practice, started early.

Everything lands on the parent. The coordination the paediatric team did invisibly becomes a part-time job. Where there’s NDIS support coordination funding, use it. Where there isn’t, request it.

The equipment review lapses. Wheelchairs and seating prescribed for a growing body don’t suit a grown one. Post-transition is a common time for seating problems and the pressure injuries that follow.

A transition checklist

Working backwards from eighteen. Adapt the ages to your service’s actual timeline.

By 14 – Transition is being discussed openly as a normal future event – The young person is being addressed directly in appointments – They’re beginning to learn what their condition is and what their supports do

By 15–16 – You’ve asked the paediatric team their transition process and the date care ends – A GP has been chosen and a relationship started – The health summary has been begun

By 16–17 – Comprehensive handover document requested from the paediatric team – Referrals written by the paediatrician — rehabilitation physician and any specialists – NDIS plan reviewed with adult goals: work, study, independent living, community – Therapy that was school-based has been funded directly in the plan – Equipment and seating reviewed, since childhood prescriptions won’t fit an adult body – The housing conversation has at least been opened

By 17–18 – Transition meeting held, where the service offers one – Decision-making and consent arrangements understood and, where needed, formalised – Changes at 18 checked: Disability Support Pension, Medicare, NDIS supports including SIL eligibility – First adult appointments booked, not just referred

In the first year after 18 – Adult services actually engaged, with appointments attended rather than pending – An annual review rhythm established with the GP – Classifications and functional assessments updated to reflect an adult – Support coordination in place if the picture is complex

Print it, work through it, and treat anything unticked by eighteen as something to chase rather than something that resolved itself.

For the young person

If you’re the one going through this, a few things worth knowing.

You’re allowed to be in charge of this. It’s your body and your condition, and from eighteen it’s legally your decision-making. Professionals will sometimes default to talking to your parent out of habit. You can redirect that, and it’s reasonable to.

Learn to tell your own story. You’ll repeat it to every new practitioner for the rest of your life. Having a version you can deliver clearly — diagnosis, what it means for you, what support you need, what you want — saves you enormous time and gets you taken more seriously.

Keep your own records. A folder, digital or physical. Reports, letters, prescriptions, classification levels. The system won’t hold your history for you anymore.

Find other adults with CP. Peer networks consistently come up as more useful than almost any professional input for the practical business of adult life with cerebral palsy. They’ve solved problems that no clinician has encountered.

Ask for what you want, not just what you need. Transition planning tends to focus on clinical continuity. Your goals — work, study, moving out, relationships, travel — are legitimate parts of the plan and should be in it.

If the transition has already gone badly

Plenty of people reading this are not planning a transition — they’re some years past one that nobody managed, and function or supports have drifted as a result.

That’s recoverable, and it’s worth doing deliberately rather than continuing to muddle through.

Start with the GP. Find one willing to take this on, book a long appointment, and explain that you need to rebuild coordinated care. Ask for a GP Management Plan and Team Care Arrangement, and for referrals to a rehabilitation physician and the allied health disciplines that lapsed.

Rebuild the record. Request copies of past reports from the paediatric service — they hold them for years and will usually provide them on request. Assemble the health summary you should have been given at discharge.

Get current assessments. Classifications and functional assessments from childhood are likely well out of date. A current OT and physiotherapy assessment gives you an accurate baseline and the evidence for an NDIS plan that reflects reality.

Review the NDIS plan properly. If the plan still carries childhood assumptions — therapy at school-age levels, no employment or independent living goals, support hours set when a parent was doing most of the work — that’s grounds for a reassessment with current evidence.

Expect some ground to have been lost, and some to be recoverable. Deconditioning, contracture progression and untreated pain all respond to intervention, often more than people assume after years of nothing. The window is wider than it feels.

None of this requires a transition programme. It requires one GP who’ll engage and someone willing to chase referrals for a few months.

For parents

Three things, said plainly.

Your role is changing, not ending. For years you’ve been the coordinator, the historian and frequently the therapist. Some of that transfers to professionals, some to your adult child, and some genuinely falls away. The adjustment is real and it’s worth naming rather than absorbing silently.

Start handing over earlier than feels comfortable. Letting a sixteen-year-old answer the question they’ve been asked, even slowly, even imperfectly, builds something that will matter enormously at twenty-five. Answering for them is faster and costs more.

Transition is a good moment to think about the long term. Not because anything is urgent, but because it’s the natural point to ask what the next decade looks like — including housing, including your own capacity over time. Families who open that conversation at transition have options. Families who open it during a crisis have fewer. Our guide on when is it time covers the signs worth watching.

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We support young adults with cerebral palsy making the move into supported independent living across NSW, including those needing high intensity supports. Our companion guides cover what changes in adulthood and the classification systems. If transition is on the horizon and you’re not sure what comes next, call 1300 271 824.

General information only, current at the time of writing. Transition arrangements, the age at which paediatric services end, and guardianship and decision-making law all vary between states and territories — confirm the position where you live. Medicare care planning items and NDIS supports change periodically. This guide is not clinical or legal advice. In an emergency, call 000.