Olivia lives with the rare Kleefstra Syndrome.

The NDIS isn’t enough. We need strong disability advocacy too. Analysis

The NDIS isn’t enough. We need strong disability advocacy too.


The National Disability Insurance Scheme will give people with disability many things, including choice, control, and a lifetime approach to their needs. But these advancements must not come at the expense of something equally important: their voice.

Strong, independent advocacy empowers people with disability, their families and carers. It helps them understand their human and legal rights, communicate their needs, and have those needs met. It also helps promote these rights to the wider community and acts as a safeguard against abuse or neglect.

It’s just as important as anything the NDIS has to offer.

As VCOSS and Disability Advocacy Victoria argue in a recent joint submission to the Review of the National Disability Advocacy Program, a robust, diverse and well-resourced disability advocacy sector is crucial during the roll-out and full operation of the NDIS.

There are three things the government should do to make this a reality.

1. Avoid a ‘one size fits all’ approach.

People with disability are not a homogenous group. A young child with an intellectual disability will have different challenges, needs and levels of support than an Aboriginal man who is blind, or an autistic woman who doesn’t speak English.

The Government should therefore resist the temptation to de-fund specialist advocacy organisations in favour of ‘generic advocacy’.

The same goes for the different models of disability advocacy, which range from self-advocacy and family advocacy to legal advocacy and systemic advocacy. Each of these advocacy types are suitable under different circumstances and complement one another.

Disability advocacy relies on a close and trusting relationship between organisations, their staff and the person using the service. Any wholesale re-tendering of advocacy services would also put these relationships at risk, potentially destroying much of the existing value and expertise of the sector.

Instead, the Government should work with existing disability advocacy organisations to build on their strengths, and fund more services to meet current gaps. Advocacy services should also continue to be funded separately from organisations that deliver direct personal care services, so they can maintain their independence.

2. Put their hand in their pocket.

Funding for disability advocacy is woefully inadequate. Currently, 12,000 are supported through the National Disability Advocacy Program[1] out of a total of 4.3 million people living with disability[2]. That means 0.03% of people with disability being supported through the NDAP program.

As a result , there are large gaps in geographic coverage and some types of advocacy. The introduction of the NDIS will only exacerbate this.

Money is a huge part of the answer. No amount of program restructuring will reduce service gaps resulting from low funding levels. Large increases in NDAP funding are required.

People who are ineligible for the NDIS will also require disability advocacy to achieve their access and support needs from other systems.

Disability advocacy also addresses broader inclusion issues not addressed by the NDIS, such as access to mainstream services, the built environment, public transport, housing, education, employment, justice and information and communication systems.

Additional funding is also required to increase the coverage of disability advocacy services across Australia, particularly in rural and remote areas, and to improve access for people who are likely to be underserviced, including Aboriginal people, people from culturally and linguistically diverse backgrounds, the LGBTI community, those with complex communication needs, an intellectual disability or mental health issue.

3. Streamline reporting requirements

Quality assurance is important, but often the processes for quality control and reporting are too resource-intensive and onerous. Making oversight and accountability measures proportionate to the size of the funding amount—and adopting a streamlined ‘report one, use often’ approach—would save organisations valuable time and money.

We also need to ensure organisations are being asked the right questions. Reporting processes could be enhanced to capture more meaningful information, such as the prevalence and types of barriers to people realising their human rights. And the effect advocacy has on overcoming these barriers.

Advocacy organisations also do good work identifying systemic issues, and should continue to be funded to undertake this work.

The Government should then use all this data to—perhaps with the help of an independent body—develop stronger and more cohesive policy.

The NDIS is undeniably a significant achievement. It will enhance the lives of millions of Australians living with disability.

But we owe it to those people to also ensure that a strong, diverse and well-resourced disability advocacy sector is also maintained long into the future. ■

Comedian and journalist Stella Young was a celebrated disability advocate. She died in 2014.


Banner image: Twitter/@Advancedcare1

[1] Department of Social Services, Review of the National Disability Advocacy Program: Discussion Paper, April 2016, p. 2.

[2] Australian Bureau of Statistics, Disability, Ageing and Carers, Australia: First Results, Cat. No. 4430.0.10.001, ABS, 2015.