A young woman with Down syndrome smiling while working in a local shop, supported through the NDIS to build skills and independence.

Down Syndrome and the NDIS: What You Need to Know!

Down syndrome is part of everyday life for thousands of children, young people and adults.

Many people with Down syndrome use the NDIS to get the support they need to learn new skills, live independently, take part in their community and work towards their goals.

At Lifely, we support people with Down syndrome across regional Victoria, Melbourne’s outer west and border communities in New South Wales and South Australia. Our supports are practical, respectful and shaped around what matters to you.

This guide explains Down syndrome and the NDIS in clear, simple language.

What Is Down Syndrome?

Down syndrome is a genetic condition that happens when a person is born with an extra copy of chromosome 21.

It is present from birth and lasts for life. People with Down syndrome have their own personalities, strengths, interests and dreams.

Down syndrome can affect:

Learning and understanding
Speech and communication
Muscle tone and physical development
Health, such as hearing, vision or heart conditions
Independence and daily living skills

Everyone with Down syndrome is different. Some people need very little support, while others need more help throughout their lives.

People use different words to describe themselves. At Lifely, we always respect the language you choose.

How Common Is Down Syndrome?

According to Down Syndrome Australia, Down syndrome is the most common chromosomal condition.

Between 2016 and 2020, there were about 265 babies born with Down syndrome each year. This means around 1 in every 1,158 babies born in Australia has Down syndrome.

There is no single national count of people with Down syndrome. The best estimates suggest there are approximately 15,000 people living with Down syndrome across Australia.

As of March 2022, there were 12,561 NDIS participants who listed Down syndrome as their primary or secondary disability. This shows how important NDIS is in supporting people with Down syndrome across their whole lives.

In Australia, people with Down syndrome are living longer and healthier lives than in the past. Today, the average life expectancy of a person with Down syndrome is around 60 years.

Research also shows that strong wellbeing for people with Down syndrome is closely linked to access to NDIS supports and services that build skills, independence and connection, including local supports from organisations like ours.

How Down Syndrome Can Affect Everyday Life

Down syndrome can affect people in different ways and at different stages of life.

Some people may:

Take longer to learn new skills
Need support to communicate or understand information
Benefit from routines and structure
Need help with personal care or daily tasks
Want support to live independently
Need help with school, work or social activities

Big life changes, such as starting school, leaving school or moving into adulthood, are times when extra support can make a big difference.

Does the NDIS Support People With Down Syndrome?

Yes. The NDIS supports people with Down syndrome.

Because Down syndrome is a lifelong condition, many people are eligible for NDIS funding if they meet the access rules. Support is based on individual needs, not just diagnosis.

NDIS plans are built around goals. What one person receives may be very different from someone else.

What Supports Can the NDIS Fund?

Depending on their goals, NDIS supports someone with Down syndrome may use include:

Early childhood supports
Speech pathology
Occupational therapy
Physiotherapy
Psychology or behaviour support
Support at home or in the community
Help with routines, communication and independence
Social and life skills programs
Support with work, study or volunteering

Supports can change over time as needs and goals change.

How Lifely Supports People With Down Syndrome

Lifely has more than 40 years’ experience supporting people with disability, including people with Down syndrome.

We work at your pace and focus on building confidence, skills and connection. Our intake team listens carefully and helps match you with the right supports.

NDIS supports

One-on-one support
Personalised support for children, teens and adults in Bendigo and Mildura, including nearby towns within about 40 km of each CBD. Other locations may be considered based on individual needs.