Down Syndrome: What It Is and How to Support Teens and Adults

People with Down syndrome are going to school, working, living more independently and living longer than ever before. With the right support, the teenage and adult years can be full of friendships, work, community and real independence.

This guide explains Down syndrome in plain language, what it can look like for teens and adults, what helps, how the NDIS fits in, and how we support people with Down syndrome on the Gold Coast and Sunshine Coast.

What is Down syndrome?

Down syndrome is a genetic condition caused by an extra copy of chromosome 21. It isn't an illness. Most people (about 95%) have an extra chromosome 21 in every cell, called trisomy 21. A small number have translocation or mosaic Down syndrome.

An estimated 13,000 to 15,000 Australians have Down syndrome, and about 1 in every 1,150 babies is born with it. Average life expectancy is now around 60, and more than 1 in 10 adults with Down syndrome reach 70.

What Down syndrome can look like for teens and adults

Learning. Most people with Down syndrome have an intellectual disability, usually in the mild to moderate range. Many learn best visually, through pictures, reading and seeing things done, and keep learning throughout life.

Communication. Understanding is often stronger than speech. Clear, short sentences, visual supports and extra time to respond help a lot.

Health in adulthood. Some health issues become more common with age. Around 40% of adults develop an underactive thyroid, hearing loss often starts earlier, and sleep apnoea and cataracts are common. Adults with Down syndrome also have a much higher risk of Alzheimer's disease, usually from their 40s and 50s. An untreated thyroid problem can look like dementia, so regular check-ups matter.

Strengths. Many people with Down syndrome are social, caring and determined, with a strong visual memory and a real enjoyment of routine, friends and community.

What helps day to day

• Visual supports, like picture schedules, checklists and showing how to do something

• Breaking skills into small steps and practising them in real places

• Supported decision making, so the person has a real say in their own life

• Regular health checks, including yearly thyroid and blood tests and hearing and eye checks every two years

• Keeping a record of the person's usual skills, so any changes can be noticed early

• Plenty of opportunities to be social, active and part of the community

Down syndrome and the NDIS

Down syndrome is on the NDIS's List B, a list of conditions that are likely to result in a permanent impairment. That means the NDIS generally accepts it's lifelong, but you still need evidence of how it affects everyday life. Reports from allied health professionals with real examples, like "needs prompting to manage a routine", make a big difference.

Depending on the person's plan and goals, NDIS funding may include core supports for daily living and community access, capacity building for independence and social skills, therapy such as speech pathology and occupational therapy, and support to find or keep a job. From 1 January 2028, new applicants will go through a new access process that includes a functional capacity assessment.

How we support people with Down syndrome

At Loving Life, we support teens and adults with Down syndrome on the Gold Coast and Sunshine Coast. You can read more on our Down syndrome support page.

1:1 support. Our 1:1 NDIS support gives the person a consistent worker who gets to know their goals. That might be community outings, shopping, cooking, public transport, or building the confidence to do more independently.

Skill building. Through capacity building and daily living support, we practise real-life skills step by step. If work is a goal, our Employment Assistance program can help with the move from school to work.

Groups. Many people with Down syndrome love being part of a group. Our small groups offer friendship, fun and a regular routine, with skills built into everything we do.

Gold Coast (from The Hub in Nerang and out in the community): Skill Space, our weekday day program for life skills; Social & Skills for boys and young men; Girl Squad for girls and young women aged 17 to 25; and Cook. Learn. Thrive., our cooking program in the Hub kitchen.

Sunshine Coast (from The Studio, Moffat Beach and out in the community): ThunderBolts for young adults, Fun Friday, the Craft Group, Ladies Lunch and our Men's Group.

Our groups are small and well supported, and food on group days is on us, so no one misses out. You can see what each group does on our Gold Coast groups and Sunshine Coast groups pages.

Where to find more information

Down Syndrome and Intellectual Disability Queensland (1300 881 935) supports people with Down syndrome and their families across Queensland, and Down Syndrome Australia has great resources on adult health and ageing. We also support people with intellectual disability.

📍 Based on the Gold Coast and Sunshine Coast

📝 Get in touch with the Loving Life team here.

Information current as at 8 November 2026. NDIS access rules are changing from 2028, so check with the NDIS before you apply. This post is general information, not medical advice.

Sources: What is Down syndrome? (Down Syndrome Australia); Population statistics (Down Syndrome Australia); Ageing and Down syndrome (Down Syndrome Australia); Down syndrome and dementia: a guide for families (Down Syndrome Australia); List B: conditions that are likely to result in a permanent impairment (NDIS).