National Disability Insurance Scheme (NDIS) and Epidermolysis Bullosa (EB)

Please note: While every care has been taken to ensure that information contained on this website regarding the National Disability Insurance Scheme is accurate, changes to the Scheme may occur which might impact on the accuracy of the information and DEBRA accepts no responsibility in this matter. If in doubt potential clients of the NDIS should seek their own advice to verify their eligibility and entitlements before acting.

How can Debra support
Our National Family Support Coordinator can assist you with your NDIS application if required. She will support you to gather all required information/support letters and will work with you to develop future goals. With your permission, our Family Support Coordinator can liaise with your treating health professionals to ensure best possible access to the scheme and will advocate for you during the initial plan meeting, reviews and appeals if required. Our National Family Support Coordinator can be contacted at simone.baird@debra.org.au or on 0413 9670 609.

What is the National Disability Insurance Scheme (NDIS)?
The National Disability Insurance Scheme, also known as the NDIS, is run by the National Disability Insurance Agency, also known as the NDIA.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 lifelong. A ‘significant disability’ means 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. And ‘necessary’ means something a person needs that is related to their disability.

Eligibility and Access to NDIS
To access the NDIS a participant must meet a number of requirements:

·         aged between birth and 65

·         Are you an Australian citizen, permanent resident, or Protected Special Category Visa holder

·         live in Australia

·         have a disability caused by a permanent impairment

·         need disability-specific supports to complete daily life activities

Information on eligibility and access can be accessed here.

Meeting the Disability Test – EB
The National Disability Insurance Agency (NDIA), which administers the scheme, has developed a list of conditions which are designed to streamline the access process in certain cases. Severe EB is one of these conditions and meets eligibility to include early intervention services for children with significant developmental delay and disabilities, and adults with a progressive disabling condition. Individuals with the severe types of EB will not require any further assessment in satisfying the disability test.  Those with milder forms of EB may qualify however are subject to a further assessment by the NDIA and may be asked to provide evidence of the impact of EB by sourcing letters of support from treating doctors and Occupational Therapists.

What can be funded
The NDIA fund items that assist people meet their everyday needs, daily activities, consumables, personal care, mobility requirements and capacity building, some examples are:

·         Support worker assistance with daily life tasks

·         Allied Health support – OT, speech therapy

·         Continence aides

·         Modifications

·         Disability specific requirements.


Contacting NDIS
The NDIA have produced several publications which help to understand key information about the NDIS including what it is, if you can access it and contact details. For more information, please visit https://www.ndis.gov.au/