Bill Shorten will leave the NDIS in the hands of people with disability

Key points:

• More people with lived experience of disability are now members of the National Disability Insurance Agency Board and the NDIS Independent Advisory Council, as of January 5, 2025
• Many of the board and council members have lived experience of disability, allowing them to provide insight into possible barriers that NDIS participants may face and how to navigate these challenges
• NDIS participants may find that their lived experience of disability helps them manage their own NDIS funds, while others may seek disability advocacy assistance

The National Disability Insurance Agency Board and the NDIS Independent Advisory Council appointed new board members with disability on January 5, 2025, emphasising the importance of lived experience. 

Although Bill Shorten is expected to leave his role as NDIS Minister in February 2025, the decision to appoint more people with disability to the NDIA Board and NDIS Independent Advisory Council is promising. 

NDIS Minister Bill Shorten appreciated the new board member appointments, citing their diverse life experiences and expertise. 

“We welcome Vaughn Bennison, Associate Professor Lorna Hallahan, Dr Gill Hicks AM MBE, Andrew Vodic and Jane Wardlaw to the Independent Advisory Council, each bringing lengthy careers within the disability sector as well as their own personal lived experience as people with disability,” he said.

“As the NDIS undergoes significant reform to ensure it can best support people with disability now and into the future, it is critical NDIS participants’ voices are represented by experts from their own community, which each of these new members are [sic].

“The strength of their collective experience and their commitment demonstrates the Independent Advisory Council’s crucial role in the NDIS.”

Each of these members will join their respective boards on a part-time basis and will serve a term of three years.

The National Disability Insurance Agency Board is responsible for establishing future steps for the NDIA, ensuring:

• effective communication with related groups such as the NDIS Minister, the National Disability Insurance Scheme and the Independent Advisory Council, 
• legal requirements are followed and risk management is maintained, 
• the NDIA is meeting expectations; and 
• the creation of an NDIA corporate plan annually. 

The NDIS Independent Advisory Board collaborates with the NDIA Board with a key purpose to ensure the concerns and values of NDIS participants, their families and carers are heard and implemented where possible. 

Appointing people with lived experience of disability means that concerns such as accessibility, acceptance and barriers preventing a person from accessing services such as the NDIS can be raised and addressed.

As the new members take their places on the boards, Minister Shorten expressed his gratitude to the outgoing members of the NDIA Board and the Independent Advisory Council for their contributions.

“Ms Allan and Dr Seaton have made an incredible contribution to the NDIA Board and I thank both for sharing their expertise in helping to shape the direction of the scheme during this time,” he said.

“I also extend my gratitude on behalf of the government to each of the departing Independent Advisory Council members — Sylvana, Jennifer, James and George — for their service in representing the interests of participants as the NDIS has been undergoing [sic] significant change.

“The NDIS will succeed only if the voices of participants are at its centre and they have each played a significant role in making that a reality in their time on the Independent Advisory Council.”

Although creating places for board members with lived experience of disability can help bring key issues affecting many people to the surface, it may not be a flawless strategy. 

Some people with disability may have specific concerns that affect a small proportion of NDIS participants and may not be an experience held by board members. The experiences of people with disability vary greatly in terms of conditions and severity.

For this reason, the Independent Advisory Council members consult with reference groups related to Children, Young People and Families, Home and Living, Equity and Inclusion and Intellectual Disability. 

However, in cases where specific concerns are not addressed, advocating for yourself could be beneficial. Everyone has the right to express their views and self-advocacy is particularly important for people living with a disability. The Disability Support Guide provides suggestions about self-advocacy for people with disability as well as the basics of disability advocacy. 

A person with lived experience of disability may not have personally experienced disability. This may include carers or family members who care for people with disability and understand some of the challenges they face daily. 

The term ‘lived experience’ can also refer to other aspects of a person’s life, such as their upbringing, trauma or cultural background. 

Having personal experience of living with disability means that you may find it easier to identify what supports are working and which ones aren’t in your particular situation. 

Some NDIS participants manage their own NDIS funds, also known as self-managed plans, instead of having a plan manager. If an NDIS participant feels changing their plan is required due to different needs, they may wish to request a review of their plan, in collaboration with health professionals. 

Different options are also available to help NDIS participants best manage their plans, such as agency managed and plan managed.

More than 661,200 people in Australia are registered as active NDIS participants. 

Do you have lived experience of disability or are you a carer of someone who does?

Let the team at Talking Disability know on social media. 

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