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Cerebral palsy and the NDIS
Search for cerebral palsy information in Australia and you'll find a great deal about children — and then the content stops. Which is strange, because most people with CP are adults. This series is the part that's missing: ageing with cerebral palsy, moving out of home, adult services, and the things nobody warns you about.
Why this series is written for grown-ups
Early intervention. School transitions. Therapy intensity in the first five years. Equipment for growing bodies. Parents of young children with cerebral palsy are, relatively speaking, well served by Australian resources.
Then it stops — at roughly the point where the majority of a person's life with CP is still ahead of them. Of the roughly 17,300 NDIS participants with cerebral palsy as their primary disability, more than ten thousand are over eighteen.
Adults with CP say this constantly: they aged out of the information as well as the services. One week there's a team who've known you since you were three. The next, the paediatric system has handed you off and nobody is obviously in charge.
So these guides are for adults with cerebral palsy and the people around them — and where they address a person directly, that's deliberate. Many readers will have CP themselves.
The thing that gets said wrongly
Cerebral palsy is described as "non-progressive", meaning the original brain injury doesn't worsen. That's technically accurate and routinely misheard as nothing changes.
The brain injury is static. The body living with it is not. Decades of altered movement patterns, muscle tone and joint loading produce cumulative effects, and many adults with CP experience increased pain, fatigue and functional change — often earlier than the general population and usually with no warning from anyone. If you've noticed things getting harder and been told CP doesn't progress, you're not imagining it.
GMFCS, and what it does and doesn't tell you
The Gross Motor Function Classification System is the five-level scale most people with CP are classified against — usually mentioned in a report at some point and rarely explained properly. Here's the distribution across Australia, from the Australian Cerebral Palsy Register.
| Level | Broadly means | Australian distribution |
|---|---|---|
| I–II | Walks without assistive devices, or with some limitation | 63% |
| III | Uses mobility equipment such as a walker | 11% |
| IV–V | Always uses a wheelchair | 26% |
What GMFCS does not describe
It covers gross motor function only. It says nothing about communication, cognition, continence, vision, hearing, epilepsy, pain or fatigue. Two people at the same level can need entirely different support, and plenty of people at Levels I–II have significant support needs that have nothing to do with walking.
Treat it as one input into planning — never as a summary of a person. The most common harm it causes is a support plan built around mobility that ignores everything else.
Guides for adults with cerebral palsy
Written for participants, families and the people supporting them. These cover what to discuss with a treating team — they're not clinical advice, and your own practitioners know your situation.
Cerebral Palsy in Adulthood: What Changes
Premature ageing and post-impairment syndrome, pain that gets dismissed as "just your CP", fatigue as a physiological reality, secondary conditions to monitor, why adult services are thin, and how to build a team and plan one step ahead.
Moving Out: Supported Independent Living with CP
What SIL looks like across the GMFCS range, the provider questions specific to CP — transfers, mealtime support, communication, equipment — housing and SDA, what a week actually looks like, and honest notes for parents and for the person moving.
Understanding GMFCS and Your Supports
The classification in depth, how it should and shouldn't inform an NDIS plan, and what to do when a support plan has been built around mobility alone.
From Paediatric to Adult Services
The transition cliff between 16 and 18 — what ends, what doesn't exist yet, how to assemble a replacement team, and what to put in place before the handover happens.
Communication, AAC and Being Heard
Keeping AAC current as an adult, communication passports, the competence assumption, and the hospital-admission problem where familiar communication support disappears.
Daily Living: Equipment, Personal Care and High Intensity Supports
Seating and positioning, transfers and manual handling, continence, and where CP support crosses into the high intensity skills descriptors.
Adults with CP and supported living
Among NDIS participants aged 18 and over with cerebral palsy, 25% live in supported independent living. For all participants aged 18 and over, it's 10%.
Adults with CP are two and a half times more likely to live in a supported home than the average participant. That reflects the support needs that come with higher GMFCS levels, the ageing of parents who have often provided decades of hands-on care, and the straightforward fact that many adults with CP want their own home rather than a childhood bedroom at thirty-five.
If that conversation has started in your family, you're in well-populated company — more than two thousand adults with cerebral palsy in Australia have made this move. The companion guide covers what it actually involves, and the general guides below cover the mechanics of SIL itself.
Language, and the competence assumption
Adults with cerebral palsy raise this constantly, so it's worth being explicit about the choices in these guides.
We write "person with cerebral palsy" or "adult with CP". Not "CP sufferer", not "afflicted with", not "confined to" or "bound to" a wheelchair — a wheelchair is a mobility device that expands range, not a confinement. This isn't etiquette for its own sake: language shapes how practitioners approach someone, and a person described as suffering gets treated differently from a person described as living.
We also avoid inspiration framing. Being told you're inspiring for going to the shops is not a compliment, and the genre built around it is widely resented by the people it's supposedly about.
And a point for families and support workers reading this: speech affected by cerebral palsy is not evidence of impaired cognition. Many adults with CP have entirely typical cognition and spend their lives being spoken to slowly, loudly, or through a companion. Speak to the person. Wait for the answer. Let it take as long as it takes.
Talk to someone who supports adults with CP
We support adults with cerebral palsy in supported independent living homes across NSW, including people needing high intensity supports such as dysphagia support, enteral feeding and complex personal care. Whether you're two years from a decision or facing one next month, we'll talk it through honestly.
Or enquire online and we'll call you back within one business day.
