politics

Submission to the Senate Inquiry into National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Introduction

I would like to thank the Committee for the opportunity, as short as the timeframe is, to provide comment on this proposed legislation. As a person with an acquired disability, the NDIS has been lifesaving for me. I have a neurological condition that is under researched and poorly understood in medical networks. But it has prevented me from working,  and maintaining relationships and any semblance of the active and constructive life I once lived. Instead, I am left with a life of chronic pain, where preparing and digesting food is difficult, participating in community and public life is largely impossible, I am unable to drive and rely on a range of mobility aids and other assistive technology.

My NDIS packages has never provided enough supports for me to be able to return to paid work, however, I do contribute as best I can through volunteer work, that is largely undertaken from my sofa.

I do not have the capacity to address all the detail of the bill. So, I will focus on four key issues:

  • How it undermines the founding principles of the scheme
  • Economic issues and if it responsibly and effectively addresses the need for savings
  • Increased ministerial power
  • Cuts to community participation

Founding principles of the scheme

This Bill proposes changes to the NDIS that entirely undermine the founding principles of the scheme, that was developed with, by and for Australians with disabilities. These principles include a human rights approach that provides individualised care to people with disabilities accounting for the whole person and their unique needs. Not only does the Bill seek to remove the notion of whole of person care. But overall, it removes the human rights approach that centres people with disabilities in their own care. After already having a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability it is absurd the Government will now roll back the key mechanisms people with disabilities fought for to keep our community safe.

In addition to the basic human rights principles often summarised as #NothingAboutUsWithoutUs, the scheme was founded on the principles of

  • choice and control
  • value for money and
  • reasonable and necessary

…drive expenditure of all supports. Regardless, many recent changes have already undermined these principles. For example, the refusal to allow participants to purchase off the shelf items that serve as assistive technology, requiring them to purchase from disability approved suppliers means they are forced to pay the higher prices of specialist providers. This might be the case for a grabber someone might use to pick items up off the floor, noise cancelling headphones required for those with extreme noise sensitivity, or an overbed table that could otherwise be purchased at a general provider.

The agency has also increasingly removed choice and control from participants. In addition to removing access to off the shelf assistive technology, the agency has directed the supports they should use and restricted the cost codes they can enter into the NDIA portal. This is inefficient, not only because it prevents access to care recommended by medical teams. But also it encourages expenditure that would not otherwise be used, or unspent funds in plans.

Ministerial power

The increasing ministerial power written into this Bill goes to the heart of the breach of the #NothingAboutUsWithoutUs and human rights principles upon which the Scheme was founded. Not only is it a gross overreach of power in a Westminster System, but it is also an incredibly inefficient and paternalistic approach to what is supposed to be a person centred, rights-based system. The removal of review mechanisms further exacerbates this paternalism, undermining due process to which all Australians are entitled, especially given Australia is signatory to the Declaration on the Rights of Peoples with Disabilities and other relevant international human rights instruments.

The Minister has already proven how completely disconnected he is from the needs of the disability community, let alone the specific needs of individuals with disabilities. He should not be given right of way over the care plans of all the nation’s people with disabilities. That should be the responsibility of qualified and experienced health and disability professionals. This is not a new argument. As a community, we have been arguing that plans need to be developed and approved by staff with disability qualifications, as opposed to the unqualified staff that so often make the life changing decisions on NDIS Plans within the Agency now. Moving these powers and more to the Minister, and removing any right of review is not only undemocratic, but may indeed be illegal. This parliament should not allow such a change to be made, and force some person with a disability or their family to test such law through to the High Court when this all goes terribly wrong.

Community participation

The blanket 50% cut to all community participation budgets is not acceptable. Community participation is not just people with disabilities going out for social gatherings. It is used to pay for people to attend medical appointments and run basic errands that they would not otherwise be able to do. For example, because my plan hasn’t met my needs for several years and the Agency hasn’t responded to any formal complaints or Change of Circumstances, I have not had any funding to use for support workers for community participation.

This means I have not been able to attend my doctor to receive the injection I am supposed to take monthly to stabilise my immune response. I can’t go to that appointment alone because for all intents and purposes, I pass out when I have the injection and need to be supervised, and need to have someone with me who knows and understands my condition to provide me with assistance (including anti-nausea medication, ginger and water). I will barely be vocal, so they need to be able to understand my signals, and also provide physical assistance when the time comes to leave, helping me into my wheelchair and driving me home again. Without this injection, my pain levels have gone up, as have my requirements for other medications. It also effects my digestion and I am unable to eat whole, hot foods, including vegetables and many proteins. My fatigue is also significantly increased, preventing me doing basic life administration like showering, reading emails or signing service agreements.

Similarly, I have not been able to hire a support worker to take me to the post office, to collect parcels the postman failed to leave at my door. I recently hitched a ride with a neighbour to the local shops to collect such a parcel. He dropped me near the post office while going to the service station for petrol. However, because I wasn’t under the supervision of a support worker, when public construction workers turned on an electric saw and started cutting concrete pavers, my body shut down from sensory overload and I passed out. I was wearing one pair of noise cancelling headphones, but changes made to my plan several years ago meant I’ve not been allowed to refresh them for a long time and they no longer work as well as they should. I was never given any money in my consumable budget so I can’t buy any of the noise reducing headphones like ‘Loop’ the budget barrier compounded by the rule preventing off the shelf purchases). All these issues compounded to leave me passed out in a busy shopping centre known to be criminally dangerous, unable to get away from the stressor causing my physical state, or access a person to protect me. Cuts to community participation budget are cuts to the safety of people with disabilities.

I do spend some of my community participation budget to attend a weekly pottery class run by the Canberra Potter Society. I find the class incredibly therapeutic. Working with the clay is a great stress relief, helping me manage my anxiety and depression related to living with disabilities; but so is spending time with my classmates, who also live with disabilities. We are able to bond and build relationships in ways that just wouldn’t be possible otherwise. In addition to counteracting the feelings of aloneness that come with living with an isolating disability, the process of creation is incredibly valuable for my metal health, both from an artistic creative perspective, and a capitalist productive perspective. Since beginning these classes, my artwork has been displayed in exhibitions run by the Potters’ Society, the Australian National Veterans Art Museum, and the Tathra Warf. The weekly class is my only social interaction. I am able to transport myself there on my mobility scooter. The teachers are trained and experienced in social work and disability support in addition to art practice and cater to our specific disability needs. In that environment we are safe, supported and heard in ways that we simply aren’t in the wider world. I am not alone in my fear that this safe and productive space will be taken away from us with the proposed cuts.

Canberra Potters runs 12 classes with additional supports for people with al needs and abilities each year. In these classes, they have numerous students who attend through NDIS funding either independently or with support workers. Approximately 30 students who attend Canberra Potters classes year upon year do so with NDIS funding.

I asked some of my fellow students what coming to pottery means to them in the context of the proposed cuts. Everyone is very distressed about the situation. Person one, who has been attending the same class for several years said pottery provides a chance at communication, “to hang out with our friends, have a break from home, talk to friends and make something for the day. If you feel angry you can take it out on the clay. A lot of us live with depression and that’s hard to stay at home with. If we come here, we can talk it out with our mates. I think if we lose this group, it will take a lot of us down. Most of the peers here have been coming for ages and we’ve built a friendship and to lose that is going to hurt a lot of us… There are a lot of people with mental health problems, and they need their peers and friends to lean on. You can take it out on the clay, or you can make something that you want to make, but at home we can’t do that. And I wouldn’t be able to stay at home 24/7 because I would go insane.”

Person two has been attending the class for a year or two. She comes from a family with several people with disabilities. She said “for me it’s to get away from home because it’s so stressful with the housework, and everybody’s medical issues. And it’s something that I can take home and say ‘I made that’. And I can use it, and I can put it in front of me and say look what I achieved. It helps me to manage my depression and anxiety.”

One classmate experiences a high level of mental health conditions. She has been attending for many years with the assistance of a support worker. She said “this whole week has been hard. Coming here makes you realise, what a big difference it makes for me. I’m scared of losing this. Every hour of the day is difficult. People don’t realise. It’s essential to have that. They need to know that some people are living differently to them.”

Student five said, “pottery means everything to me, it stops my suicidal thoughts. I made friends for the first time in 30 years. It gave me a purpose. It gave me a weekly structure and a sense of accomplishment because I found out I was good at this kind of art. It’s therapeutic, but I feel like I’ve actually achieved something. I’ve found out I’m good at a craft that other people like. I’ve also got a community of teachers and artists that I feel like I’m part of. Before I didn’t have any community, I was at home, with no community. My only outing was shopping, I didn’t feel like I had a personality. Although I had seen a psychologist for years, the act of pottery has given me more mental health than anything else.”

Suicide prevention and other crisis prevention benefits seemed to be a common theme in the most serious student responses. The consensus seemed to be, as person four said, “it’s the only time we get space from our own head.” But one of the teacher’s said she’d “seen enormous growth in confidence, in risk-taking, in knowledge and community connection. Seeing personal growth and the sense that people can do something that they couldn’t do before, or even begin to do. For me that’s lovely to see.”

Savings and economic issues

Examples provided in the submission already illustrate systemic ways in which the NDIA is wasting resources including creating plans with therapies not recommended by participants’ medical team. There is substantial wastage rejecting supports to which participants are entitled and using outside law firms to fight litigious cases against people with disabilities when rotating law teams often don’t even know the details of a case from one appearance to the next. Removing the right of review is not the answer to this wastage. Correct allocation of supports, in line with a rights-based approach is. So is suitable disability training of staff within the Agency.

For all the complaining about how much the NDIS costs government, what is not being discussed is that for each dollar spent on the NDIS an estimated $2.25 goes back into the wider Australian economy.[1] More than 1 in 5 Australians have a disability[2] which means every Australian knows someone with a disability or someone who works in the disability sector. Anyone can become disabled at any point in their lives. Choosing to cast people with disabilities aside at this point in history not only lacks foresight, and empathy, it is un-Australian and undemocratic. There are so many places on the big end of town that could be a source of revenue or budget savings for the government, instead of pulling services from the countries vulnerable. At a time when the world is becoming increasingly polarised, targeting the other and those on the margin, Australia should be standing up to make our country more safe for such people, not less. The NDIS always was a win:win, creating jobs and supporting the economy, not just costing the government money. But successive ministers and governments have let the media run certain narratives to the contrary. People with disabilities are nothing but a burden.

But each of us contributes in our own way. I volunteer my time with community groups, working for human rights, social justice and community cohesion. I write. I work with refugees. I teach people practical ways to help the environment. In the past 5 years, I saved the lives of nearly 500 Afghan women’s human rights defenders needing to escape the Taliban. But I don’t get paid for any of that work. Before I got sick, I served in the Australian Army. How much difference have you made, truly, with your high paying salary, that would justify cutting off life saving and basic supports to Australians with disabilities? Perhaps some of these savings should be coming from parliamentary salaries and benefits afterall, though I never argued for such cuts before.

Conclusion

A blanket cut of 50% to community participation in all plans is not safe, nor is there any way to tell if such cuts would be removing supports that weren’t reasonable and necessary. Savings should be found by reducing the NDIA’s legal expenditure, cutting down on actual dodgy providers in the fashion that participants have asked, and responding to needs for savings in accordance with the co-design principles required of a human rights approach to disability support. The Minister should not be provided with the additional powers requested under this Bill. The participants must not have their right of review withdrawn.

[1] https://nds.org.au/news/new-modelling-shows-52-billion-benefit-of-ndis-sector-launches-election-campaign-to-warn-of-impact-o (accessed 29 May 26)

[2] https://www.abs.gov.au/media-centre/media-releases/55-million-australians-have-disability (accessed 29 May 26)

What maps tell us about our world

Today, I visited The Map Centre at the National Library of Norway. While I have been interested in maps as long as I can recall, I adore the artistry of old maps. In Paris, I fell in love with the pictorial map I saw in the gift shop at The Louvre, and I have a print of an example of the equivalent style depicting Beijing in the 1930s. Early in my time at ANU, when I went to the UN in New York, I made the time to go to the New York Public Library and visit their map room and contemplated the how the Peace Treaty of Versailles after WWI shaped the fate of Africans for generations to come.

My favourite security studies professor has a huge map on his wall with Australia at its centre, aiming to show what, or more importantly who, should be in Australia’s strategic focus. It’s very telling when you look at that map, it’s an orthographic projection, so Australia appears the way it would from space and many of the big name countries we often hear strategists talking about don’t even appear on the map.

Anyway, Norway’s Map Centre has the largest collection of Nordic maps and maps of the far north. The oldest maps date from 1482 and the newest from 1800. I’m visiting Scandinavia on an ANU Hansen Scandinavian Friendship Grant to help finish my PhD in International Relations. In addition to the specific institutions I’m visiting for my research, I’m trying to see the world, and current affairs, from a Scandinavian perspective while I’m here. Of course, to understand current affairs you have to understand past affairs.

Looking at these ancient maps was fascinating. It reminded me how we need to ask who the person is that decides if a place, people, or nation exists. Over the decades, and centuries, records like these appear to wipe out the existence of peoples and their nations. But also, like that map on my favourite professor’s wall, the world looks different depending on where you sit.

Some of the earliest maps that depicted Norway also depicted Lapland, but the Sami have spent generations being dispossessed of their lands across Scandinavia. Australia, of course, was nothing more than a curve indicating the north coast of the Kimberley on a map from the 1500s. Here, in Australia, the understanding of the significance of the German invasion of Poland in WWII largely comes from period British TV shows. So too, the horror at German occupation of Norway, but it’s only looking at how close those countries are to each other on these maps, and understanding their shared strategic history, does that all hit home.

But I thought two items were most telling of all for the present day. One was the book written by the brother of a Norwegian King who travelled to Rome seeking to be Archbishop of Scandinavia, describing the customs and fashions of his people to continental Europeans who found them so different from themselves. Even though they are new to NATO, most people around the world today would definitely think of Scandinavia as part of Europe. But so often, Scandinavian social policy and the emphasis on the rule of law to protect people, especially the most vulnerable, stands at odds with practice in other European countries.

The other item was the map that took the arctic as the centre point, and showed how close each of the Nordic countries are to Russia. Now more than ever, Finland, Sweden and Norway each feel the pressure of an antagonistic Russia with little counterbalance in a multipolar world, in which no one is able to rely on the United States… for anything.

Regardless, all these old maps can teach you a whole lot that you won’t learn from the Google Maps you keep in your pocket each day, and they look mighty fine while doing it!

Town Hall meeting about closure of The Green Shed

A community meeting organised by independent senator David Pocock got quite passionate this afternoon, as staff and members of the community gathered to discuss the handover of The Green Shed to St Vincent De Paul. The change was announced recently as a result of an ACT tender process and has caused quite a stir in the community.

The proprietors of The Green Shed have spent 13 years building up the enterprise, proving that a tip shop can be a profitable business, successfully reducing landfill, providing a service to Canberra and supporting a range of community groups along the way. The Green Shed has provided over $2 million dollars in charitable donations over the years in addition to the free goods they donate to those in need to in the community.

Genevieve Jacobs, who Canberrans came to love at the ABC, but is now Group Editor for Region Media, which includes Canberra’s own, the Riot Act, recently penned a piece describing The Green Shed as “a reliable source of all sorts of odds and ends that delight the hearts of collectors and scavengers alike.”

What Jacobs entirely fails to realise is that The Green Shed has in fact provided a valuable, democratic goods outlet to Canberrans living on and below the poverty line for over a decade. Many of those people do not feel safe asking for help from a religious organisation, having experienced trauma in their past. Even for those who haven’t suffered so, accessing support from St Vincent de Paul is actually very difficult.

The Canberra Times opted to edit out the questions and comments posed at the meeting from customers of The Green Shed who have not been able to access Vinnies services, community groups who are concerned about the concentration of service provision by these major charitable groups, and failings of the model of service provision by Vinnies. The comment section on the Riot Act Facebook page includes many articulate replies providing case studies of these issues.

For example, Amanda Ralph writes:

“For me, The Green Shed has been a lifeline over the past 2 years since fleeing family violence. I’m not here to bash the work of SVDP, but there is significant loss to be had by the tender being awarded to them.

The free clothing, linen, towels and soft furnishings etc available via the Green Shed is essential for people at the very bottom who have been priced out of charity op-shops such as SVDP and Salvos.

I have personally reached out to the crisis line of Vinnies, and I did receive a bag of food, a $30 fuel gift card, a foodbank voucher and a $10 Vinnies store voucher.

That $10 went on a pair of pants ($6) and a long-sleeved top ($4) for my son. Not quite a winter wardrobe for us both.

Even if Vinnies intend to reduce landfill and operate in a similar fashion to the Green Shed, their fundraising via retail clothing stores will absolutely impact the availability and quality of clothing and shoes for free.

When you are in the midst of a deep financial struggle, you already feel worthless and ashamed. Even if they maintain “free” baskets, it will be AFTER items have been rejected from the retail sales piles.

The Green Shed staff have always had such empathy and compassion. I have just moved home for the second time since fleeing – this time into a house rather than the tiny shoebox previously.

Being able to fill a trolley with odds and ends, from shelving to doorstoppers, and a very worn but amazingly comfortable reading chair, and be told $30, when even Kmart quality items would have been $250 is just irreplaceable.

I do understand the intention to serve the community in bigger ways, and use the money raised via “tip shop” avenues to fund more community programs – it’s a great idea.

But core essential functions, like free clothing and blankets as we head into winter will be lost, from those struggling at the very very bottom….

There was a certain dignity afforded by not having to admit “I can’t afford to pay for that”…”

When community leader, known for running the inner north community street pantries and Ainslie Buy Nothing Group, Amy Blain asked Jones about Vinnies aims in tendering for The Green Shed, he confirmed it was because they wanted to be able to use the profits from the recycling process to support the community through Vinnies exclusive programming. The St Vincent de Paul constitution prevents the donation of cash in the same way the previous proprietors had supported other community groups.

Paul and Margaret McGrath, who operate the Ngunnawal Street Pantry, reiterated concerns about the model where Vinnies make a profit from their stores to cover costs for programs, which fail to meet the needs of the community in a range of different ways, especially in times of increasing cost of living pressures.

Margaret Kitchin from ACT NoWaste has said the decision to award the tender to St Vincent de Paul was not a financial one. But she has said Vinnies experience with stores across Canberra factored into the decision, as did the tender’s plan to include education programs and upcycling classes.

Given the community concern about what sort of experience Vinnies other Canberra stores provide, this decision does not seem to be in the best interests of Canberrans. In addition to the earlier concerns about pricing lower socioeconomic community members out of the op shop market, there are a significant number of donations that Vinnies do not accept at their stores that volunteers have told this author are thrown in the rubbish. Furthermore, contrary to policy and community trends, Vinnies have recently introduced branded plastic bags for store purchases, when they could simply be reusing donated bags.

The Canberra Environment Centre has been running recycling education, upcycling, repair and other practical, hands-on environmental workshops for years. When they were forced to move out of their Acton premises over twelve months ago, they and their supporters went all over town for support and a new location. But the ACT Government failed to come to the party. Nonetheless, the Canberra Environment Centre lives on at Gungaderra Homestead in Harrison. Any decisions, financial or otherwise relating to community environmental education in Canberra should have included them, rather than continuing to expand the ever-increasing monopoly St Vincent de Paul have in the community sector.

It was good of Phillip Jones, local Director of Communications for Vinnies to stand up at the community meeting today. But he isn’t an executive. All he could offer was intentions and communications.

The proud and articulate staff from The Green Shed were organised and communicated their disappointment and concerns well. As one of the team leaders said, it seems counterintuitive for Vinnies to be talking about wanting to “support the community” while at the same time, The Green Shed team, many of whom live with multiple disabilities are now facing homelessness and have spent the last week choosing between rent and food. They work well as a team and made the commitment today to negotiate, with the already agreed support of the unions, for a unique enterprise agreement with Vinnies for the staff who would transfer across under the new administration. What they have experienced so far has been undignified and unfair.

From what they said at the meeting, it seems staff were supposed to have even been included in consultations about the policy ahead of the tender process, let alone the tendering itself. While I don’t believe this change is valuable, if it was to come, the change management has been handled very poorly indeed.

It is important the media coverage at least, holds St Vincent de Paul to what was said today, even if the ACT Government won’t investigate and remedy the decision and process that has been poorly undertaken and concluded. Given the outrage within the community, and the upcoming election, I do believe an inquiry would be in order.

UN readies for another resolution while Australia stands in the way of ending impunity for wartime rape

The UN Security Council is in the process of developing a new resolution on Women, Peace and Security. The resolution has been anticipated for several months and is due to be passed as part of the Council’s annual open debate on conflict related sexual violence which is due to be held in New York on Tuesday. An Arria formula meeting was held earlier in the year to prepare council members for the debate, with a particular focus on ending impunity for conflict related sexual violence. Conflict related sexual violence is the focus of four of the existing eight resolutions on women, peace and security. But even the Council has bemoaned the lack of prosecutions for these crimes.

Nobel Laureate Nadia Murad will address the Council during the Open Debate. She has spoken out time and again for justice for survivors from her community who experienced sexual violence as war crimes, crimes against humanity and genocide at the hands of Da’esh in Syria and Iraq. For all the times the international community has shone a spotlight on her tears, we have still failed to do what she asks.

Germany, the current President of the Security Council and chair of this week’s debate is the only country to put a member of Da’esh on trial for any of these gendered crimes. But tens of thousands of foreign fighters travelled from countries around the world and committed these crimes. Many of those foreign fighters come from countries that are States Parties to the Rome Statute of the International Criminal Court and are therefore obliged to investigate and prosecute these crimes in their own court systems.

Both houses of Australia’s Federal Parliament passed multi-party motions calling for the investigation and prosecution of Australians who may have perpetrated sexual violence as war crimes, crimes against humanity and genocide. Several federal ministers have reinforced this obligation. These ministers have included Julie Bishop as Foreign Minister, Peter Dutton as Minister for Home Affairs and Linda Reynolds as Assistant Minister for Home Affairs.

Despite this, the government has failed to implement the strategies required to make such investigations and prosecutions are reality and they have invested energy into policies and legislation which prevent such action. Chapter eight of the Commonwealth Criminal Code clearly articulates the crimes that are laid out in the Rome Statute and ensures that Australian authorities have jurisdiction over such offences even when they are perpetrated overseas, against victims from another country. But this legislation has never been tested in court. The Australian Federal Police require the funding and other resources to stand up unit dedicated to such investigations. No such funding was made available in the latest federal budget.

In order for these prosecutions to occur, the perpetrator must be in federal custody. But the government has pursued a range of legislative and policy processes removing this probability. Given the parliament passed legislation allowing the government to revoke the citizenship of anyone who travelled to Iraq or Syria to join Da’esh, the government was obliged to include an administrative step determining if such individuals perpetrated war crimes, crimes against humanity or genocide before making a determination about citizenship revocation. The citizenship review board that advices the Minister for Home Affairs on such matters has apparently continued to fail to account for such obligations. Now, over a dozen individuals, some of whom are known to have perpetrated heinous crimes against women have had their citizenship revoked, further reducing the likelihood that their victims will see the justice they so rightly deserve.

There is a group of Yazidi women who are fighting for access to support services under Australia’s victims of human trafficking schemes. These women were purchased by an Australian man, for the purpose of sexual slavery, and repeatedly sexually and violently abused. Under Australia’s own criminal laws, those women count as victims of human trafficking, modern slavery, war crimes, crimes against humanity and genocide. But rather than allow them justice, the government revoked the citizenship of their abuser. If they so choose, they could bring a case against the Commonwealth for failure to uphold their obligations under the Rome Statute. Their country of residence, or any other country of interest could take Australia to the International Court of Justice for failing to fulfil our obligations under the Convention on the Prevention and Punishment of the Crime of Genocide.

Early in the new year, the government tried to go even further, seeking legislative changes that would allow them to revoke the citizenship of even more people, and enforcing Temporary Exclusion Orders to delay Australians of counter-terrorism interest from re-entering Australia. This is yet another policy that would prevent the arrest or detention of individuals responsible for conflict related sexual violence.

At the Arria formula meeting earlier in the year, civil society presenter Akila Radhakrishnan from the Global Justice Centre said achieving accountability for conflict related sexual violence “requires more than just eloquent rhetoric; it will require Council members to take concrete action and display considerable political will. Sexual and gender-based violence is, at its core, an expression of discrimination, patriarchy and inequality.” Countries like Australia must stop getting in the way of justice and follow up the global rhetoric with the actual action required to end impunity for conflict related sexual violence. We must investigate and prosecute these crimes now!

Greens policy on ME/CFS

The Australian Greens have launched a policy on the debilitating neurological disease myalgic encephalomyelitis, a type of Chronic Fatigue Syndrome known in Australia as ME/CFS. Senator Jordan Steele-John has campaigned passionately for patients with ME since coming to parliament in 2017. This is the first ever political policy to be released on ME/CFS and is well timed with a Federal election due in May.

The Senator was kind enough to call me today to discuss the new policy. After years of campaigning with the hashtag #millionsmissing from their normal lives, the Senator explained this policy was an important way to show the patient community that they were no longer invisible. “When the evidence shows that a disease like this is real, it doesn’t mean that people automatically stop experiencing stigma.” He went on to say this policy was designed to show that it was not just his words that the Greens had to offer ME/CFS patients, but the whole Green movement now had a plan for action to help make their lives better.

The Greens’ policy has four parts. The first is to increase funding for biomedical research to $15 million dollars that would be administered by the National Health and Medical Research Council. This would allow funding for a range of innovative work being done across Australia by a range of different organisations. It would be enough to cover the gap in funding to scale up the sample size of calcium ion channel research being undertaken by the National Centre for Neuroimmunology and Emerging Diseases, as well as a range of other significant biomedical research projects. Since the release of the Greens’ policy, the Coalition Government has announced $3 million dollars in ME/CFS research funding.

Secondly, they propose a national ME/CFS summit to bring together patient advocates, biomedical researchers, clinicians, the National Disability Insurance Agency (NDIA), Department of Human Services, and Department of Social Services. Such an event could be facilitated in such a way that it would catalyse policy alignment between all these groups, with a particular focus on government departments, service providers and medical practitioners. At present, the discrepancies between current research, medical practice, the NDIA and other government departments pose a significant barrier to the health and wellbeing of the hundreds of thousands of Australians who suffer from ME/CFS.

In many cases, patient advocacy groups have been the only source of support and guidance through these frought bureaucratic processes that combine to discriminate against people with ME/CFS. These groups have run on the smell of an oily rag for decades but take a leading role in coordinating communication and advocacy to improve the standard of care for ME/CFS patients. Funding and support of these groups is the third component of the Greens’ policy and it is long overdue.

The fourth component of the policy is a promise to provide participant pathways for people with ME/CFS to access the National Disability Insurance Scheme (NDIS). The NDIS was established with the explicit purpose of supporting Australians with disabilities to access social, economic and community life. Senator Steele-John was infuriated by the revelations that the NDIS had vastly underspent this financial year, but was still failing so many Australians in need of support.

There are a range of reasons given to the scores of people with ME/CFS who are rejected from the scheme. Some reasons relate to outdated research that suggested Cognitive Behaviour Therapy and Graduated Exercise Therapy would make them better; making them ineligible under the criteria of ‘permanence’. Others find themselves caught up in the stigma and misconception of medical professionals who misdiagnose them with Conversion Disorder or Somatic Symptom Disorder. If all the symptoms experienced by a person with ME/CFS are described in either the International Consensus Primer or the Canadian Consensus Criteria, then they will not meet the criteria for Conversion. But approximately 80% of people with ME/CFS are women, who for centuries have had their physical symptoms disregarded as mental illness. In addition to advocacy efforts to have ME/CFS added to List B of the NDIS, Senator Steele-John spoke about aims to continue working with his colleague Senator Rachel Siewert to reform the Administrative Appeals Tribunal to improve its fairness and reasonableness in NDIS appeals. He also spoke about the relationship between the AAT and abusive behaviour towards people with ME/CFS, which may mean it falls in the remit of the Royal Commission into violence and abuse of people with disabilities, the terms of reference for which are due to be finalised before the election.

Senator Steele-John’s efforts to support the ME/CFS community are commendable. It is a source of great hope that he has been able to expand on the good work undertaken by his predecessor Senator Ludlam and bring his entire party on board to work for the improvement of the lives of people living with this debilitating commission. He is facing a tough re-election campaign, facing off against candidates from the One Nation party. We can only hope that the good people of Western Australia get out to support his campaign and vote him back into the Senate in May so he can continue his invaluable work for Australians with disabilities, including those living with ME/CFS.

Nadia Murad: small town girl, reluctant hero, Nobel Laureate

Over the years, the Nobel Peace Prize has chosen some doozy candidates, but it remains one of the world’s most preeminent honours. Last weekend, the Norwegian Nobel Committee announced this year’s award would be shared by Nadia Murad and Dr Denis Mukwege. Both these people have fought for years to end sexual violence in armed conflict.

Nadia Murad grew up in a small town in northern Iraq. She dreamed of becoming a teacher or a beautician. But in 2014, her life was torn apart when ISIS forces swept through her village in an effort to kill the men in her community, enslave the women and girls, and convert the boys. Nadia is a member of a small religious and ethnic community. Although they believe in one heavenly God, ISIS believe they are devil worshippers. That day, Nadia was kidnapped, trafficked to Mosul and sold into sexual slavery. She was beaten and brutally gang raped for a month before finally escaping.

As in so many communities, Nadia and women like her who were so brutally assaulted feared the shame of their community. But she bravely stood up and told her story. What happened to Nadia was not her fault. The only person to blame for rape is the rapist. But what Nadia experienced was not just rape, it was part of a campaign to eradicate her community. It was genocide.

As difficult as it can be for survivors to tell their stories, Nadia sat before the United Nations Security Council and told the world what had happened to her. She told them of the pain and suffering she experienced at the hands of ISIS. She told them what they’d done to her whole community.

Since then, she has continued to campaign for justice. She feels her survival obliged her to fight for the rights of persecuted minorities and victims of sexual violence. In a statement after the Nobel announcement, she reiterated that she wanted to see perpetrators of sexual violence in a courtroom, not executed.

But in many ways, she is still beholden to the experience forced upon her. She is still a relatively ordinary young women, wanting to train to be a beautician; but is thrust into the spotlight because of her bravery, and the heinous acts of men from around the world.

After the announcement was made, in a nod to the #metoo movement and the topical Kavanaugh hearings, Nadia said “my hope is that all women who speak about their experience of sexual violence are heard and accepted.”

Nadia Murad at the National Press Club in Washington DC

Nadia is currently working to help rebuild villages that were destroyed in the battle with ISIS. Villages were burned to the ground, there is no medicine or food, and no crops in fields. While the Nobel Prize money, her share will be about half a million US dollars, will be very much appreciated, it won’t go far in the face of such great need. She explained that it costs about $US 20-30,000 to buy back a Yazidi sex slave and estimated there are about 3000 women and girls still held in captivity.

She has now called “on governments to join me in fighting genocide and sexual violence.” The Australian parliament has committed to investigate and prosecute these crimes, but so far has not acted to do so. To do so, they would need to establish and fund a dedicated team to investigate and prosecute our nationals who perpetrated these crimes as well as gather testimony from Yazidis who now call Australia home.

“A single prize and a single person cannot accomplish these goals. We need an international effort.” If all governments undertook such efforts, then, perhaps Nadia will have the prize she truly seeks, justice for her and her community, and a serious step toward ending impunity for conflict related sexual violence.

 

If you’d like to help Nadia’s cause, you can donate to Nadia’s Initiative via squarespace at https://nadiasinitiative.org/donate/

Gendered insecurity in the Rohingya crisis

Last month, Human Rights Watch released a report confirming that the Burmese security forces “have committed widespread rape against women and girls as part of a campaign of ethnic cleansing against Rohingya Muslims in Burma’s Rakhine State” since 25 August 2017. The report found that the actions of the military, border police and ethnic Rakhine militias amount to crimes against humanity under international law.

Although there is no legally agreed definition of ethnic cleansing, the description developed by a UN Commission of Experts holds significant sway. They described ethnic cleansing as ‘a purposeful policy designed by one ethnic or religious group to remove by violent and terror-inspiring means the civilian population of another ethnic or religious group from certain geographic areas.’ The events of September and October have certainly served to remove Rohingyas from northern Rakhine State.

In early December, the International Committee of the Red Cross, one of the very few international organisations with access to effected areas inside Myanmar, reported that “formerly energetic communities and village tracts are suddenly empty. Life continues for those that remain, but in certain parts of Maungdaw and Sittwe, there is a pervasive sense of absence.”

MSF have now also released extensive testimonies from survivors on the killing, arson and sexual violence they have experienced. Ninety percent of the survivors of sexual violence treated by MSF were attacked after 25 August. Fifty per cent of survivors are under the age of 18, including several under the age of ten.

Early reports of the number of pregnant women and new mothers in the refugee population could have been used as an indicator of increased conflict related sexual violence and ethnic cleansing. While the accuracy of the data and a heightened tendency for pregnant women to flee may both affect the analysis, the matrix of indicators of conflict-related sexual violence developed in response to UN Security Council Resolution 1888 identifies an increase in cases of unwanted pregnancy as an indicator of ongoing sexual violence. International non-governmental organisation Ipas, began increasing its response to the crisis, providing trainers to ‘provide on-site training for health workers in postabortion care’.

That same matrix also reminds us that the increasing ‘statements from doctors, war surgeons, gynaecologists and/or medical NGOs that they are increasingly seeing rape-related injuries’ are an indicator of ongoing sexual violence. As early as September, doctors from the International Organization for Migration, as well as a range of UN agencies and non-governmental organisations, reported high numbers of patients with physical injuries that are consistent with violent sexual attacks, including forced penetration and lacerations to the vagina.

In the two weeks immediately proceeding the crisis, the lead UN agency on sexual and gender based violence (UNFPA), provided services to 3500 Rohingya refugee women who had been sexually assaulted. It is incredibly difficult to gather large-scale data on sexual violence in emergencies, but we do know that only 7 percent of women subjected to sexual violence during the conflict in East Timor reported it, and only 6 percent of rape victims during the Rwandan genocide sought medical treatment. If the women and girls who have reported to those health clinics represent 6 percent of victims, they would be the tip of just one iceberg comprising 58,300 women and girls.

If we had used a gendered lens to analyse the unfolding crisis from the outset, we would have had a better comprehension of the ethnic cleansing that was occurring from the outset. This could have better informed humanitarian and international legal responses. A new comment in the Australian Journal of International Affairs unpacks reported figures of pregnant women who are seeking refuge in Bangladesh in an attempt to understand some of the gendered dimensions of the conflict. It proposes possible reasons for the presence of a high proportion of pregnant and lactating women in the refugee population, and goes on to reflect on indications of increased conflict-related sexual violence and ethnic cleansing. It shows that, while failings in the quality of data in emergencies mean it cannot be relied on as the basis for rigorous conclusions about the gendered nature of conflict, when taken with qualitative reports, and compared with other emergencies, gendered data can be used to build a better understanding of the conflict.

In the first two weeks of the Rohingya crisis, UNICEF reported that an unprecedented portion of the refugees fleeing to Bangladesh were children. The Chief of Child Protection for UNICEF in Bangladesh, Jean Lieby announced that preliminary data showed that 60 percent of the arriving refugees were children, who were often unaccompanied. Such extreme family separation can be an indicator of the degree of chaos and of rate of adult deaths. This second indication is reinforced by the fact the next largest age group of refugees are the elderly. UNICEF also reported that 67 percent of the refugees are female. Combined, this could indicate fighting age males had been targeted in Myanmar.

In mid-September, the Bangladesh Ministry of Health reported that approximately 70,000 of the Rohingya refugees who have arrived since August were pregnant or new mothers. This would represent a staggering 20.8 percent of the female population. Despite the high birth rates among Rohingya communities, we know that Rohingya women have an average of 3.8 children in their lifetime, we would expect only 6.9 percent of the female Rohingya refugee population to be pregnant or breastfeeding. The Bangladesh home minister has said that 90 percent of the refugee women have been raped. That would equate to over 335,600 people.

Peter Bouckaert, emergencies director at Human Rights Watch, said that “the level of hatred and extreme violence—especially towards women and children” is driven by dehumanisation and racism. Because the Rohingya have been described as “too dirty” for soldiers to rape, he believes there is no doubt that “the majority of the women who were raped were killed.” The organisation has drawn connections between what is happening to the Rohingya in Rakhine State and what occurred during the genocide in Rwanda.

Indeed, a comparison of the above data on the Rohingya refugees to that which we saw in the aftermath of the Rwandan genocide provided an early indicator of ethnic cleansing in Rakhine State. UN reporting in the aftermath of the Rwandan genocide indicated that the genocide had so rapidly altered the demographics that 60–70 percent of the population was female. It was estimated that the Rwandan refugee population exceeded pre-war fertility. In the immediate aftermath, this was presumed to be the case because of the high number of men who were killed during the genocide. Adolescent and adult males under the age of 45 were the primary targets in the early stages of the Rwandan genocide. There were also “indications that attempts to exterminate women, girls and the elderly eventually encountered significant popular opposition”. But sexual violence was a key feature of the Rwandan genocide. Although, as in the Rohingya case, the majority of rape victims were then killed, most recent estimates indicate that in excess of 20,000 Rwandan children were born from genocidal rape.

It is hoped that the new comment in the Australian Journal of International Affairs, and the general analysis described here, will serve as a reminder of the importance of gendered, cross-disciplinary research to accurately understand forces of peace and conflict in the world, and to inform appropriate policy responses such as humanitarian assistance and international legal action.

Where’s the Governor-General when you need him in a constitutional crisis?

Governor-General, Sir Peter Cosgrove AK MC

The power of the Governor-General is prescribed in the constitution and detailed in constitutional practice.  While the Governor-General customarily acts on the advice of relevant ministers communicated through the Federal Executive Council, there are times when the Governor-General can act without, or contrary to that advice. Overall, the Governor-General has the responsibility of  ensuring the execution and maintenance of the constitution.

The Coalition currently holds 76 seats in the lower house, the minimum number required to form government. Barnaby Joyce MP and Senators Fiona Nash and Matt Canavan, all of the National Party, currently have cases before the High Court to determine if their dual citizenship precludes them from holding federal office.

Section 44 of the constitution is worded to ensure no federal member is beholden to a foreign power. There may be some room for interpretation for individuals who unwittingly held dual citizenship with another country whose head of state is also Queen Elizabeth II. Can one truly be considered beholden to a foreign power if said power has the same head of state as Australia? However, there is no room for such interpretation when the dual citizenship is held with a country outside the Commonwealth. For example, the meaning of the constitution would be quite clear if someone were a dual national of Italy, as is Matt Canavan.

On the face of it however, all three members appear to be in breach of Section 44 of the constitution. Their eligibility to sit in parliament could not be subject to more serious questioning. Remaining in cabinet under such conditions is phenomenally irregular. However, the High Court is unlikely to make a decision before October. Then, if Barnaby Joyce is ineligible to hold office, his seat would likely be re-decided in a by-election.

In the mean time, could the government itself be considered unconstitutional? If Barnaby Joyce is ineligible then the Coalition only holds 75 seats in the lower house. It has been reported that when parliament next sits, if Joyce doesn’t refrain from voting, Labor will seek to have all votes deferred. Is this a basis on which the Governor-General can be assured of the Coalition’s ability to maintain government?

More broadly, in section 64, the constitution also states that no minister can hold office for any longer than three months without being elected to parliament. While common law protects the decisions made by those who thought they were acting out the duties of their rightful office, neither Joyce nor Nash have resigned from cabinet since learning of their predicament. As such, the decisions they make moving forward cannot fairly be interpreted as made while thinking they were performing duties of rightful office.

Given such a constitutional crisis, where is the Governor-General and what is he saying on the issues at play? At present, it seems the Prime Minister, and the government more broadly are waiting for the High Court to decide the fate of the suite of parliamentarians who have discovered they are dual citizens.  The High Court is unlikely to make a decision before October. However, especially considering the number of individuals who have not resigned, but retained their office and in some cases, cabinet positions, the time has come for greater oversight and employment of the responsibilities of the Governor-General.

Super department a bad sign for justice and the rule of law

Earlier today, Prime Minister Malcolm Turnbull announced the launch of a new ‘super department’ along the lines of the UK Home Office or the US Department of Homeland Security.

The move was not recommended by the recent review of the national security architecture by respectected Michael Le’Strange, was not endorsed by cabinet and has split the National Security Committee. The new department will capture the Australian Secret Intelligence Organisation, the Australian Federal Police, Border Force and the Department of Immigration. It will be headed by the Immigration Minister Peter Dutton.

Many commentators have argued the only reason to create such a department is political, providing Peter Dutton with additional power as a means of steering him away from a leaderahip challenge. Although the government has not stated what benefits such a department would bring to national security, the new department would presumably be responsible for strategic planning and coordination of the agencies in its purvue. This is most concerning. 

The Australian Federal Police has historically been under the remit of the Justice Minister with a strong relationship to the Attorney-General’s Department. The Australian Federal Police are not only used for counter-terrorism and border control activities. The AFP has personnel deployed on operations all over the globe including on peace support operations with the United Nations. They are a significant tool in Australia’s strategic investment in a rules based global order more closely aligned with the work of the Department of Foreign Affairs and Trade and the Australian Defence Force.

On the other hand, Border Force and Australia’s immigration policies, particularly those relating to refugees and asylumn seekers, are broadly condemned as breaching international legal norms and human rights standards.

The AFP are the authority responsible for investigating and prosecuting such international crimes as war crimes, crimes against hanity and genocide when they fall under Australian jurisdiction. Each of these crimes is outlined under domestic legislation and has been included in the Criminal Code Act. Even though it is known that Australians have perpetrated these crimes while fighting with Da’esh in Iraq and Syria, no investigations of prosecutions have yet occurred. 

Indeed, rather than meeting our obligations to investigate and prosecute these crimes, Australia has supported impunity for sexual violence in armed conflict by revoking the citizenship of a key perpetrator known to have committed these crimes. That decision was made by the very man now given authority over all the agencies within thisnew department.

Amy Maguire has argued that Australia’s human rights obligations now need to be rechecked under the new departmental structure. I could not agree more.