Micheline Lee’s essay Lifeboat is beautiful. It felt like truth and it resonated. In life we occasionally have light-bulb moments. Micheline’s essay linked my gut subconscious understanding of life with a disability with my intellectual understanding of life with a disability. It is somehow both flattering and disconcerting that my analogy for the plight of the National Disability Insurance Scheme (NDIS), as “the only lifeboat in the ocean” for people with disability, was used as a cornerstone of this important essay.

Micheline’s essay is an intensely personal lens on the individuality of people when we speak or do anything about disability. Her piece gives the reader a firsthand window onto the NDIS and the journey for access to equality in the world as a whole.

In my opinion, there has never been a better time in our nation’s history than now to talk about the human rights of people with disability. In politics, to achieve real change, timing is everything. We have just had the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, which Labor first called for in May 2017, hand down its final report, including 222 recommendations for change. And the NDIS Review, which I established soon after Labor came to government in 2022, will also deliver its recommendations.

The final report of the Disability Royal Commission challenges us to create a more inclusive Australia where individuals live with dignity, equality and respect, and can fulfil their potential. Volume four of the final report pertains to human rights. It recommends an “overhaul of Australia’s legislative policy and governance structures to protect the right of people with disability.”

We should seize the day for a horizon project across Australian society to ensure people with disability are able to be included, whether this be going to the school of their choice, making and meeting friends, studying, working, living or enjoying themselves and moving around with the form of mobility that works best for them. We can make a national decision to journey to the horizon of the most inclusive nation in the world.

The Albanese government has set up a taskforce to respond to the 222 recommendations, led by the very capable Amanda Rishworth, Minister for Social Services, who will provide a progress update early next year. I am very mindful of the Convention on the Rights of Persons with Disabilities being used to underpin our efforts. While the NDIS Review is independent, I also have no doubt the human rights of people with disability will wash through every aspect of the important final report.

Micheline visits the scheme as a participant, family member, mother, friend, lawyer and formidable intellect. She navigates the world bringing these various perspectives, but also from a deeply personal, unique place. Most importantly, her essay reminds those of us with the privilege of power and the capacity to make change, whether basic or transformational, that we cannot make any meaningful impact without people with disability as co-design partners.

When I first became involved with the disability sector in 2007 in the Rudd government, “Nothing about us without us” was the anthem of people with disability in their campaign for the fair go. Since 2007, I have seen and been part of the campaign for a scheme that would provide universal and lifelong support for people who are significantly and permanently disabled. Alongside every person with a disability and their families and advocates, we won the right to establish the NDIS. In 2013 the dream became a reality for hundreds of thousands of Australians with disability.

The scheme was legislated by Labor and then piloted and rolled out by successive Coalition governments. From Opposition, nothing frustrated me more than watching the scheme being run down over nine years. On a daily basis I heard about the life- changing, positive changes the NDIS had brought for many, but also horror stories of how, for too many participants and families, navigating the NDIS was an inconsistent, opaque, dehumanising “second full-time job.”

While I didn’t know Micheline’s friend Frida, I believe the shocking, avoidable death of South Australian woman Ann Marie Smith in 2020 taught a similar lesson. Ann Marie’s passing was a pivotal moment in the collective realisation that the NDIS was not doing what it was supposed to; people were not being kept safe from harm.

After my election loss as Labor leader to Scott Morrison, I understood that the universe does not grant reruns. But the universe has a funny way of surprising. With every precious minute in the job as NDIS minister, I do feel I’ve been given a remarkable second chance to return to fix up the scheme I helped create.

On first being given the shadow NDIS ministry after the 2019 election and then seeking the important role of NDIS minister in the Albanese Labor government in 2022, I was given the chance to serve where I know I can repay the gift of faith and goodwill and lessons from Australians with disability. Now that I am in charge of the scheme, I have a bird’s-eye view of how the “choice and control” the NDIS was supposed to offer was being micromanaged by governments and bureaucracies which clearly did not think people with disability could make decisions about their own lives.

After ten years, the NDIS has the momentum to return to its original purpose, to be here to stay, to become “politician-proof.” That’s why Lifeboat hits a raw nerve, because it pinpoints the pressure the scheme has been under since its creation. Despite diabolical management, the scheme has remained a fundamental structure in Australia’s safety net ecosystem. As Micheline notes, there are now more than 600,000 Australians with disability who are NDIS participants, but they are part of almost 4.5 million people with disability across the nation.

Micheline writes almost hesitantly about the collective role of governments to provide support, choice and accessibility, as though the premise is built on a house of cards. I understand that fear, but I am with her all the way to help people with disability and the people who love them.

We must remember that the NDIS was only intended to be one part of a broader disability support ecosystem. But that ecosystem isn’t working as intended. It’s on all of us to commit to greater investment and effort to create inclusion: schools, transport, early childhood, community activities, advocacy, building regulations, community mental health by all levels of governments and the private sector. And there must be a discussion with states and territories about all of us lifting our outcomes in disability support. There is momentum for a better and more consistent deal. The parts of the ecosystem are being brought together.

The Disability Royal Commission was the culmination of four and half years of broad consultation. The 222 recommendations will be carefully considered; the report will not sit on a shelf collecting dust. I acknowledge that not every recommendation is automatically accepted; rather, the sum of the work is critical. Nor will the NDIS Review report sit on a shelf after it is handed to the Disability Reform Ministerial Council.

Too much of the NDIS’s ten-year history was left to be written by Coalition governments which, in my opinion, did not understand the human rights foundation of the world- first scheme. Successive governments ran down the National Disability Insurance Agency by imposing unreasonable staffing caps, resulting in a lack of capacity and a lack of capability. How could 4500 staff who serviced 150,000 participants at the start of the scheme be expected to give the same level of attention to the 660,000 Australians who now access the scheme?

Participants have been faced with the horrible situation of long delays in their package being approved and having to explain their needs to people who lacked knowledge about their disability or disease. We’re changing that, with the largest investment ever made in the NDIA. That funding means recruiting more staff and ensuring better training and systems so that the agency is fit for purpose.

We’re committed to co-designing policies with people with disability and making sure those with lived experience have a seat at the table where decisions are made. We have already made significant changes to the membership of the NDIA board and the agency’s senior management.

We’re recognising that one size does not fit all and we’re building flexibility into the way services are delivered, especially in remote and Indigenous communities.

And we are stopping the fraud and rorting that has seen money that was meant for participants line the pockets of crooks and dodgy providers that taint the reputation of many hardworking and decent providers. No more. That ends. We are locking the back door of the scheme that Coalition government left wide open.

I don’t dismiss any of the criticisms of the NDIS, nor do I think I can wave a magic wand and make it instantly perfect. But I can promise you that I am doing everything in my power to return the NDIS to its original intent. It is a life-changing scheme for thousands of Australians with disability and I want to make sure that is the reality for every person who is eligible and accesses the NDIS.

The underlying mission is to make the NDIS sustainable for generations to come of Australians with disability. To do that, we have to listen to current NDIS participants about where it has gone off the rails. Micheline’s essay gives us a chair’s-eye view. It perfectly encapsulates the human experience of disability. It uplifts because it reminds the reader impairment is a fact of life, not the problem. The problem is a lack of money and power and an inability to see past one attribute of another human. I thank her for sharing what is a deeply personal account.

Micheline mentions the great Professor Bruce Bonyhady AM a number of times in Lifeboat. Professor Bonyhady is co-chair of the NDIS Review, with esteemed former public servant and policymaker Lisa Paul AO PSM.

Bruce Bonyhady recently quoted the seventeenth-century English writer John Donne’s potent meditation, “No man is an island,” on the way all parts of society have the potential to intersect with the lives of people with disability. How we are all part of the “village” that supports and enriches our sense of community. In Donne’s famous meditation, the poet reminds us that each of us plays a role “because I am involved in mankind.”

We are all part of the rich tapestry of life. Better to do it together than alone.

No man is an island,

Entire of itself,

Every man is a piece of the continent, A part of the main.

If a clod be washed away by the sea, Europe is the less.

As well as if a promontory were. As well as if a manor of thy friend’s Or of thine own were:

Any man’s death diminishes me,

Because I am involved in mankind,

And therefore never send to know for whom the bell tolls; It tolls for thee.

Bill Shorten