On July 1 2016, the National Disability Insurance Scheme (NDIS) moved from a trial phase to a full national roll-out. In this series on Understanding the NDIS, we explore how the scheme works, why Australia needs it, and the issues to be addressed before eligible Australians, such as many Indigenous people with disability, can receive the benefits they are entitled to.

The National Disability Insurance Scheme (NDIS) is designed to offer disability support packages – that is, money for disability support – to every Australian citizen under 65 with “significant and ongoing support needs”.

When the scheme is fully implemented in 2019, up to 10% of people with a disability – about 460,000 people – are expected to receive a disability support package.

However, many people eligible for the NDIS are likely to miss out on its benefits. These people fall into particular groups, such as those who may not think of themselves as having a disability, or people who may not know what the NDIS is or how to access it.

Do I have a disability?

Many people might not apply the label of disability to themselves, perhaps because of the discrimination and stigma associated with it. Others may not think they have a disability as defined by the NDIS because of a different understanding about diversity, perhaps due to age or culture.

For instance, research shows people from Indigenous or other cultural and language-diverse backgrounds are less likely to use a disability label or use disability services.

Many people, such as children and their families, may believe support needs are the result of a developmental stage or, in the case of older people, a consequence of ageing.

For instance, behaviours such as aggression may be influenced by what the NDIS would label as social, cognitive or psychological and social disability. If the child or their family experiencing aggression believe it to be a phase, they wouldn’t think to ask for NDIS support.

Many people with disability currently do not use disability support services or do not have family to help them find support. These include some people in the criminal justice system, especially young people who are less likely to be identified as having a disability. Others in this group are homeless or have mental health needs.

In addition to the NDIS packages, the intention is to refer people with disability to health, justice, housing and education services. All of these are state responsibilities. Whether support for a person with mental illness is a disability cost and should be paid for by the NDIS, or a general health cost covered by the state, are the kinds of details still being negotiated.

In the meantime, people are confused and could miss out if states withdraw money from these services for people with disability or do not respond to increased demand, such as for affordable housing.

Then there is the issue of disability support for people with a severe and persistent mental illness. They are eligible for the NDIS if their disability is permanent. How this permanency will be defined is still being worked out, but there is a risk people whose support needs fluctuate, such as due to periodic severe mental illness, may think they do not qualify because they do not always need support.

How to access the NDIS

The design of the NDIS relies on people requesting support and making informed choices about how to receive it. In a circle of exclusion, people who need support paid for by the NDIS first need support to work out how to use and navigate the scheme.

The group of people likely to miss out for this reason are the many who are already marginalised in multiple ways, including due to socioeconomic disadvantage.

People with multiple and complex support needs are an example of this exclusion. They may have a variety of needs from a life that could include mental illness, drug and alcohol use, poverty, poor education, criminal justice contact and cultural and language barriers.

Or they may have particular circumstances, such as living in a remote community, that do not reconcile with the market-based structure of the NDIS.

Many of these people do not receive other government support they are entitled to. That then means they are less likely to apply for the NDIS. Because without connections into other supports, they are less likely to know how to navigate the new system.

The NDIS is still in the development stage and work is being done to reduce these risks of exclusion. This includes agreements with the states on how to ensure quality social support; transforming the disability sector to meet the needs of everyone entitled to use support; and building capacity for people with disability, families and professionals to understand their entitlements under the scheme.

Apart from readying social services so that quality support is available, the most important development will be information and advocacy throughout social services, so the public and professionals know how to reach out to people who could benefit from the NDIS.

You can read today’s related article on the risk to support services for parents with newly diagnosed children with disability here.