Down syndrome: information and support for every stage of life
For people with Down syndrome and their families. What it is, the questions people ask most, what helps at home and out in the world, and where the NDIS and Kinship fit in.
- Registered NDIS provider (4-GWVHCEY)
- Same support worker every visit
- Free plain-English guide to download
What is Down syndrome?
Down syndrome is a genetic condition, not an illness or disease. Most people have 46 chromosomes in each cell. People with Down syndrome have 47, with an extra chromosome 21, which is why it’s also called trisomy 21 (Down Syndrome Australia).
It happens at conception, by chance. It’s nobody’s fault. Everyone with Down syndrome has some level of intellectual disability and some developmental delay, and there’s a higher chance of some health conditions, many of them treatable.
Every person is an individual, with things they’re good at and things they find harder. Down Syndrome Australia puts it simply: most young people growing up with Down syndrome today go to school and get a job, just like everyone else.
A note on words: Down Syndrome Australia asks people to say “a person with Down syndrome”, and to avoid “suffers from”, “victim of” or “afflicted by”. We do the same.
Figures: Down Syndrome Australia (Statistics and FAQs). General information only, not medical advice. Talk to your GP or health team about your own situation.
The questions people search for
These are the questions Australians type into Google about Down syndrome, answered from the organisations that know it best.
Can people with Down syndrome live independently?
Many do, often with support through the NDIS. Others choose to live with family. Down Syndrome Australia says independent living is becoming more common for adults.
Are there levels or degrees of Down syndrome?
No. A diagnosis means the extra chromosome 21 is present. People with Down syndrome have a range of abilities, like everyone else (Down Syndrome Australia).
What is the life expectancy for someone with Down syndrome?
In Australia the average is now 60 years. As recently as the 1950s it was as low as 15 (Down Syndrome Australia; healthdirect).
Do adults with Down syndrome get dementia?
They are more likely to, and on average at a younger age. It doesn’t mean everyone will, and Alzheimer’s disease is uncommon under 40. Early signs are often changes in behaviour or personality, so raise any change with a GP (Down Syndrome Australia).
Is Down syndrome covered by the NDIS?
The NDIS looks at the impairment and how it affects daily life. Down Syndrome Australia reported more than 10,000 people with Down syndrome in the NDIS in 2019.
Are people with Down syndrome always happy?
No, and the stereotype doesn’t help anyone. People with Down syndrome feel the full range of emotions: sad, angry, scared, excited, joyful (Down Syndrome Australia).
What helps, day to day
Small, practical things that make a week easier. Take what fits and leave the rest.
Talk to the person, not about them
Assume competence. Speak directly to the person, give them time to respond and take their lead on the support they need (Down Syndrome Australia).
Regular health checks
Hearing, vision, thyroid, bones and teeth are worth checking regularly. People with Down syndrome are more likely to have low thyroid hormone levels and osteoporosis (healthdirect).
Plan for work and home
Some people with Down syndrome work full time, others have a mix of activities during the week. Down Syndrome Australia has employment and community inclusion resources.
Notice change early
Changes in behaviour, attention or planning in an adult can be worth a GP visit. Other health issues can cause similar changes, so get them checked (Down Syndrome Australia).
Talk to someone who’s been there
Your local Down syndrome association can connect you with other families. Call 1300 881 935 to reach your state or territory organisation.
How the NDIS can help
To be eligible for the NDIS you need to be younger than 65 when your application is received, an Australian citizen or permanent resident (or Protected Special Category visa holder) living in Australia, and have an impairment that’s likely to be permanent and substantially reduces your ability to do everyday things.
For children younger than 9, the NDIS uses its early childhood approach, working with an early childhood partner. From age 9, families work with an NDIS partner (NDIS).
A plan can fund support workers for help at home, personal care and getting out, plus supports that build skills. Start by calling 1800 800 110 or your local NDIS partner. The NDIS says it will decide within 90 days once it has your application and all your evidence.
The NDIS is changing
New NDIS laws passed in August 2026. From 1 October 2026, budgets for social and community participation and for daily living skills are being reduced as plans are reassessed or newly approved, and a new way of planning is due from April 2027. Check ndis.gov.au for the latest.
What’s changing (ndis.gov.au) →Support at home and in the community
We support people, not diagnoses. For someone with Down syndrome, at any age, that can look like this.
Daily living and personal care
Help with routines, meals and personal care at home, at a pace that suits the person.
Daily living support →Community participation
Getting out to work, sport, classes and friends, with someone who knows the person well.
Community participation →Life skills for independence
Cooking, shopping, catching the bus: real skills practised in real places.
Life skills →As needs change with age
Dementia and behaviour support is on our registered high intensity list, alongside medication management.
High intensity support →The same face every visit
The same support worker comes every visit, so nobody has to explain themselves to a stranger each week. Families get updates as standard.
About Kinship →Kinship Uniting Services is a registered NDIS provider (4-GWVHCEY), operating in disability and aged care since 2017. We’re based in Colebee and support families across Western Sydney, from Blacktown, The Ponds and Marsden Park to Rouse Hill, Riverstone and Windsor.
Take it with you
The free Down syndrome guide is a printable PDF of this page, with a checklist and the numbers to call. Easy to share with family, your GP or your support coordinator.
Referring someone?
Support coordinators, plan managers, discharge planners and case managers: a short call is the fastest way to check whether we can help.
For referrers →Continence products and advice
If continence support is part of daily life at any age, the National Continence Helpline (1800 33 00 66) gives free, confidential advice from nurse continence specialists, including on funding options.
Equipit sells continence products such as adult nappies and continence briefs. Equipit is the product-supply arm of Kinship Uniting Services, an NDIS registered and CHSP approved provider since 2017.
Disclosure: Equipit is part of the same family of businesses as Kinship, and Equipit itself is not NDIS registered. You’re free to buy from any supplier. Agency-managed NDIS funds can’t be spent with Equipit; if you’re self-managed or plan-managed, check with your plan manager first.
More free guides
Plain-English guides for the parts of the NDIS and caring that trip people up. Swipe to see them all.
How to apply for the NDIS
Eligibility, evidence and the application, step by step.
Read the guide →After you apply for the NDIS
What happens while you wait, and what to do with the decision.
Read the guide →Understanding your NDIS plan
Budgets, funding periods and how to read your plan.
Read the guide →Choosing an NDIS provider
Questions to ask, and how to check a provider’s registration.
Read the guide →Looking after yourself as a carer
Practical support for the people who are always there.
Read the guide →Questions families ask us
Does Kinship support adults with Down syndrome?
Yes. We support NDIS participants with daily living and personal care, community participation and life skills. Call 0437 733 744 and we’ll talk it through.
Can you keep supporting someone as their needs change with age?
Dementia and behaviour support, and medication management, are on our registered high intensity list. Tell us what’s changing and we’ll say plainly what we can do.
Will the same support worker come each time?
Yes. The same support worker every visit, and updates to the family as standard.
Can the NDIS help a young child with Down syndrome?
Children younger than 9 are supported through the NDIS early childhood approach, which can help even if a child isn’t yet eligible for the NDIS. Contact an early childhood partner or call 1800 800 110.
Where can families get Down syndrome-specific advice?
Down Syndrome Australia’s national number, 1300 881 935, connects you to your local state or territory association.
Is this page medical advice?
No. It’s general information only. Talk to your GP or health team about your own situation.
Where this information comes from
- Down Syndrome Australia: What is Down syndrome?
- Down Syndrome Australia: How to talk about Down syndrome
- Down Syndrome Australia: Statistics
- Down Syndrome Australia: FAQs
- Down Syndrome Australia: Dementia and Down syndrome
- healthdirect: Down syndrome
- NDIS: What are the NDIS disability requirements
- NDIS: How to check your eligibility
- NDIS: Guide to the early childhood approach
- NDIS: How to apply
- NDIS: Securing the NDIS for future generations (new NDIS laws)
- NDIS: New way of planning
- Continence Health Australia: National Continence Helpline
The questions in “What people ask” reflect Google Australia search suggestions, checked 4 October 2026. Figures are quoted from the organisation named; check the source for the latest. General information only, not medical advice. Talk to your GP or health team about your own situation. Page reviewed October 2026.
Let’s talk about what you need
A short phone call is usually the easiest start. We’ll ask a few questions, tell you plainly whether we can help, and agree next steps together.
Registration 4-GWVHCEY. How to check any provider’s registration in two minutes.