What is Down syndrome
Down syndrome is a genetic condition that occurs randomly when a baby is born with an extra copy of chromosome 21.
From 2016 to 2020, approximately 265 babies with Down syndrome were born annually in Australia, equating to about 1 in every 1,158 births.
It’s a lifelong condition, with the extra chromosome affecting the development of the brain and body. Down syndrome impacts people in different ways. It can impact people’s intellectual and cognitive development, physical characteristics, and increase the risk of some health conditions.
Financial support for people with Down syndrome
Down syndrome is considered a disability in Australia. The NDIS classifies it as a condition that will have a permanent disability, requiring lifelong support towards independence and other goals.
For people over the age of 9, eligibility for NDIS funding is not automatic. When applying for NDIS funding, you must show how having Down syndrome impacts your daily life.
The NDIS will look at what you can do, or what can be provided by family or others in your life. They may then determine that funding can help support you to:
- Find housing
- Manage life transitions – like when starting education or a new job
- Undertake daily living tasks
- Develop skills to help you live independency as possible like shopping, managing finances, and personal care
- Look after your health
- Take part in wellbeing activities
Participant in community and social activities.
NDIS eligibility criteria for Down syndrome support
Down syndrome is included on the NDIS’s List B of conditions likely to result in ‘permanent impairment’.
To be eligible for funding, you have to:
- Be aged between 7 and 65
- Live in Australia and be an Australian citizen, a permanent resident, or a Protected Special Category visa holder
- Have a disability caused by a permanent impairment that substantially reduces your functional capacity.
In addition to a diagnosis of Down syndrome, you need to provide evidence of the impact of the disability on everyday functioning.
Children under the age of 9 with Down syndrome can receive NDIS funding through early childhood early intervention.
If you’re approved for NDIS funding, you can use it to find independent support workers through Mable. Even if you’re not eligible for NDIS funding, you can connect with support workers via Mable and choose to pay privately.
How to apply for NDIS funding for Down syndrome
To apply for NDIS funding, you will need to have evidence the condition results in a ‘permanent impairment’ and that it substantially reduces your functional capacity, meaning you need help to do daily activities such as:
- Moving around
- Communicating
- Socialising
- Learning
- Undertaking self-care or self-management tasks.
You will also need to demonstrate how having Down syndrome affects your ability to work, study or take part in social life, and that you’ll need ongoing support.
Steps to follow when applying for NDIS funding
To start the process to get NDIS funding, you will need to complete a NDIS Access Request form.
- Contact your local NDIS Office or local NDIS partner or call 1800 800 110. You can also download and complete the NDIS Access Request Form on your computer.
- Provide evidence in your supporting information. Your treating health professional can certify that you have Down syndrome and how this impacts the different aspects of your life. Evidence of disability can be provided by a GP, physiotherapist, paediatrician, occupational therapist, speech pathologist, neurologist or other medical professional involved in your care. They must have treated you for at least 6 months.
- You can use the Supporting Evidence Form and get your health professional to fill in their section. Or you can send existing information (letters, assessments or other reports) from your health professional.
- Email your request form and supporting information to enquiries@ndis.gov.au or mailing it to PO Box 700, Canberra, ACT 2601.
Learn more about eligibility for the NDIS, how to apply for the NDIS and how to manage your NDIS funding.
Using NDIS funding for Down syndrome support on Mable
Every person wants and deserves to live an independent life – whatever that looks like to them. Through Mable, any child or adult with Down syndrome can be supported to achieve their goals.
These could include finding meaningful employment, enjoying social participation in the community, building relationships with friends, neighbours and colleagues, learning a new skill or building independence.
Once you have been approved to receive NDIS funding, you can start building your support team by connecting with independent support workers on Mable and choosing what support you would like to access to achieve the goals in your plan.
Support is available for:
- Assistance with daily living activities
- Personal care
- Learning how to run a household budget,
- Social integration and help with relationship building
- Domestic assistance
- Education assistance.
Support workers can help with a range of daily life activities. For example, Caitlin accesses support through Mable to build her skills and independence. She was even able to take her support worker Georgia along when she and her mum decided to travel to Melbourne.
FAQs
Are supports relating to Down syndrome covered by NDIS?
People with Down syndrome are not automatically eligible for the NDIS. When applying for NDIS funding, a person will have to show how having Down syndrome impacts their daily life.
Is Down syndrome considered a disability in Australia?
Yes, Down syndrome is considered a disability in Australia. It’s a lifelong condition that can impact intellectual and cognitive development, physical characteristics, and increase the risk of some health conditions.
What types of therapy are funded by NDIS for people with Down syndrome?
People with Down syndrome may benefit from therapies and supportive activities that help with their development and to reach their goals. Early intervention is particularly important, with physiotherapy, speech therapy, and occupational therapy playing key roles in improving developmental outcomes for children with Down syndrome.
Therapies can include:
- Physiotherapy to help with muscle tone, coordination, and overall physical development
- Speech therapy to improve communication abilities
- Occupational therapy to develop daily living skills.
Mable can connect families with experienced and qualified support workers to provide these therapies for adults and children with Down syndrome.
What happens if a person with Down syndrome doesn’t meet the NDIS eligibility criteria?
While Down syndrome is considered a permanent disability by the NDIS, it doesn’t automatically mean a person will be eligible for funding over the age of nine. It will depend on how the condition impacts a person’s life, and their individual needs.
Most people who apply for NDIS funding will be eligible, but if you’re not, you can appeal the process with the NDIS, or provide more evidence of how having Down syndrome impacts your life. For more assistance, contact Down Syndrome Australia by phone or email.
You can also link in with state-based programs and private services. Even if you’re not eligible for NDIS funding, you can connect with support workers via Mable and choose to pay privately.
What type of community support is there for people with Down syndrome?
Aside from a person’s family, friends and loved ones, there is support in the community available to people with Down syndrome.
In addition to Down Syndrome Australia, each state and territory has its own Down syndrome association:
- Queensland – Down Syndrome Queensland
- New South Wales – Down Syndrome New South Wales
- ACT – ACT Down Syndrome Association
- Victoria – Down Syndrome Victoria
- Tasmania – Down Syndrome Tasmania
- South Australia – Down Syndrome South Australia
- Western Australia – Down Syndrome Western Australia
- Northern Territory – Down Syndrome Association of the Northern Territory
Independent support workers on Mable can also help people with Down syndrome take part in their community, be participating in activities, work and social events.
The information provided in this article is general information only and based on current information at the date of publication. In addition to considering the information shared in this article, Mable encourages you to conduct your own research and seek independent advice about your eligibility for NDIS funding.
