The National Disability Insurance Scheme (NDIS) and childhood-onset heart disease (COHD)

This factsheet provides information about the NDIS, and how it can support individuals with CoHD and their families.

CoHD is not currently covered under the NDIS as treatment and care is supported by Medicare. Whilst most people with CoHD do not require access to supports from the NDIS, some people with CoHD may have a disability or developmental delay in addition to their CoHD. This could mean they need additional supports from the NDIS or the NDIS Early Childhood Approach. The NDIS Early Childhood Approach is covered in more detail in another factsheet.

The National Disability Insurance Scheme, usually known as the NDIS, is run by the National Disability Insurance Agency, also known as the NDIA. The NDIS funds support for adults and children with a disability, as well
as children who need help with developmental delay, to help them live and enjoy life to their full potential.

Watch a video which explains the NDIS.

The NDIS is for eligible Australians who were either born with or acquire a permanent and significant disability.

A permanent disability means a person’s disability is likely to be present throughout their life.

A significant disability is a disability with a large impact on a person’s ability to complete everyday activities.

The NDIS funds reasonable and necessary supports and services that relate to a person’s disability to help them achieve their goals.

Reasonable means the support is most appropriately funded or provided through the NDIS rather than another service such as Medicare.

Necessary means the support is needed for the person’s disability.

The NDIS funds reasonable and necessary supports and services that relate to a person’s disability to help them achieve their goals.

The NDIS is delivered across Australia with the help of partners in the community. These are organisations in your community that deliver the NDIS and can help you navigate the supports and services in your local area.

The NDIS has two types of partners in the community:

Local area coordinator partners – help people aged 9-64 years of age to find a local area coordinator.

Early childhood partners – Help parents of children under 9 years of age with developmental delay or disability to access early childhood intervention supports.

You can find your local area coordinator partner and early childhood partner on the NDIS website (useful contacts are listed at the end of this brochure). You don’t need to be a NDIS participant to get support for your child from an early childhood partner. Early childhood partners can help you access early supports to give the right support, at the right time to help your child develop the skills they need.

Both the local area coordinators and the early childhood partners are experts in navigating the disability sector and can find and connect you with community services in your local area. These partners in the community can also support you to access the NDIS. Health care professionals such as your GP, paediatrician, cardiac specialists and allied health providers can also help you to understand and connect with the NDIS. For children, early childhood educators can also provide assistance and support with access.

If a person is eligible for the NDIS they become a participant. As a participant they will receive funding for supports. These are used to work towards goals decided in an NDIS plan. The goals are special to that person and everyone has different goals. Goals could include things like improving speech or communication skills through therapy, getting support/assistance for normal everyday living activities, or even equipment to help at home or in the community. Other goals could be learning new skills, getting a job, becoming more independent and making friends and connections.

These goals will be achieved through the funded supports. Once you have your individual NDIS plan, you then work with your chosen service providers who support you to pursue your goals.

A Participant is a person with disability or developmental delay who meets the access requirements to receive support from the NDIS.

Service providers are professionals in the community who deliver supports and services such as physiotherapy, speech therapy or occupational therapy.

Supports come in many forms, but some examples could be:

• transport to enable participation in community, social, economic and daily life activities for those that require specialised vehicles or support.
• therapeutic supports including behaviour supports.
• home modification design and construction.
• mobility equipment.

The NDIS cannot fund a support that is:

• the responsibility of another government system or community service – for example medicines.
• not related to a person’s disability – for example congenital heart disease.
• relates to day-to-day living costs that are not related to a participant’s support needs – for example electricity bills.
• is likely to cause harm to the participant or pose a risk to others – for example driving lessons for a person who is medically unfit to drive.

If you or your child have a disability and are not eligible for NDIS funding, the NDIS will still help you to find and access other community and government services. NDIS partners can provide information to connect you with supports available in your local area, as well as information about what support is provided by each state and territory government.

For more information, visit the NDIS website or call 1800 800 110.

To find out more information in another language call TIS National Direct on 131 450 and speak to the NDIS on 1800 800 110.

You can read a guide to the NDIS by the organisation Raising Children. This site has resources for parents to help them better navigate the NDIS.