What does the NDIS mean for women and girls? Considering the implications of our market-based system for gender equality
Implementation of the National Disability Insurance Scheme (NDIS) is the biggest reform to the disability sector since deinstitutionalisation. To the broader community it can be assumed that the NDIS will benefit all people with disabilities. In the week of International Women’s Day, Jen Hargrave (@Jen_Hargrave) of Women with Disabilities Victoria (@WDVtweet) and University of Melbourne (@HlthEquityMDHS) and Maeve Kennedy (@mkennedy_vic) of Children and Young People with Disability Australia (@CDA39) look into the reform’s fitness to achieve gender equality now and for the next generation.
In this piece we discuss the NDIS’ capacity to provide women with greater choice and control, and a number of areas of equity and sustainability. We also examine the way the NDIS supports, or fails to support, women experiencing violence and consider the potential impact of broader gender equality measures on a market-based scheme.
The NDIS brings greater choice and control for some women and girls
For some women, the introduction of the NDIS – an individualised market-based system – has provided supports, and choices about those supports, that previously did not exist. Once an individual’s plan has been approved by the National Disability Insurance Agency (NDIA), funds for some goods and services can be spent where the participant chooses, including, at times, in the gig economy.
If you ask women with disabilities what they want from an individualised system, many will say they want to be able to choose the worker who comes into their home (or more broadly, their life), and to have more of an employer’s role and say in how that worker treats them and their children. Concerns around safety are prominent for many of the women we speak with.
“If people do the wrong thing by a client you’re usually there by yourself and it's your word against theirs” – Victorian woman with a disability
These issues are vital to consider when you are trusting people to assist you with critical and often personal supports, like showering and menstrual management.
By providing more choice and flexibility around supports, when it works well the NDIS can facilitate significantly greater community involvement and social connections for its participants. In turn, greater disability participation can create social change. Just as we are seeing at the moment in other areas of gender representation – such as the current AFLW season – increasing disability representation in the community means girls with disabilities can grow up seeing people like them playing active roles as community members and leaders.
Equity issues in the NDIS
Despite this promise, and the positive outcomes many are experiencing, significant evidence shows the Scheme is inequitable and that it risks entrenching and worsening existing disadvantage – Aboriginal people, people experiencing homelessness, people with mental health issues or chronic illness, and people with fluctuating conditions are among those who were perceivably overlooked in the Scheme’s design. It is important to understand that there are hundreds of thousands of Australians with disabilities who are ineligible for the NDIS or face significant structural barriers to accessing it – by design, it is only intended to provide services for just over 10 per cent of people with disabilities in Australia.
Among people who are eligible and accessing the Scheme, emerging research indicates that those with the greatest socio-economic capital are being approved for, and able to access, more of what they want in their NDIS individual packages.
Women and girls have lower participation in the NDIS
The NDIS provides services to slightly more than 10% of all people with a disability. Women and those experiencing disadvantage are more likely to be shut out. Photo by Anna Shvets from Pexels
Around 20 per cent of Australian women and girls have a disability, and research shows that they experience the effects of both gender equality and disability discrimination, as well as the compound impacts of these. NDIS data, mostly released through the Agency’s Quarterly Reports to COAG, are partly gender-disaggregated, showing that so far only 37 per cent of NDIS participants are women and girls. In its latest report (2019-20 Q2), the NDIA explores a number of factors that could contribute to this, but without gender-disaggregation of the numbers of the eligible population, it is unclear whether the current participation rate represents gender equity. There is also a clear need for investment by the NDIA in an engagement and participation strategy for women and girls, along the lines of the strategies currently being developed and rolled out for other under-represented cohorts.
The system’s capacity to support women to safety from violence
Women with disabilities experience higher rates of family and domestic violence than women without disabilities, yet if women or children with disabilities are separated by violence from their normal supports, under current policy and program arrangements the NDIS is not equipped to respond quickly. This can leave women in debt (awaiting NDIS reimbursement), without supports, or returning to the violence.
Even though we are five or more years into the Scheme in many geographic areas, we still don’t have a national plan about how the NDIS will work with state and territory systems to ensure women with disabilities have access to the supports they need when escaping violence – a critical gap that has a real impact on women’s safety and wellbeing. Additionally, with state transfer of various disability funds and responsibilities to the Commonwealth, the future of some pre-existing programs, like the Victorian Disability and Family Violence Crisis Response initiative, is uncertain. We risk ending up in an environment with even fewer supports available for women in crisis than we have had in the past.
The NDIS is also not well equipped to support women who become disabled as a result of family or other violence. Gaining access to the Scheme can be difficult and burdensome, and once you have been deemed eligible, based on data from the latest Quarterly Report (2019-20 Q2) it currently takes an average of 77 days for your first plan to be completed.
Does choice and control protect people from institutional violence?
It can never be argued that institutions were safe places for children or adults with disability or others living in these environments, and in many cases, various forms of abuse and denial of rights were embedded in institutional approaches. In theory, giving women access to the power to hire and fire their own disability support workers – through an individualised market system such as the NDIS – can be assumed to be a protective measure from violence.
However, it is worth pausing to note that the working conditions of one-on-one service can be just as isolated as institutional segregated environments. Additionally, many workers in the NDIS continue to experience poor working conditions, and it is well understood that disempowering conditions for workers can flow onto disempowering treatment of service users. Although most institutions have thankfully closed, service users’ safety must still be a key consideration.
This is important because there are a range of situations where provision of disability support can, and does, create opportunities for exploitation of power and perpetration of gendered violence against women with disabilities – for example, while providing intimate supports, working in isolated environments, and having access to financial management.
“We know that women with disabilities experience high rates of financial and economic abuse. Support workers helping you with finance for your housing or your banking.... how can you be sure things are being administrated properly? Especially if it’s a family member [being funded by the NDIS for] helping you” – Victorian woman with a disability
These instances are well documented, and it can only be expected that substantially more evidence will emerge through the current Disability Royal Commission. Gender-based violence against women and girls with disabilities has not yet been identified as an issue featuring in public hearings through the Commission’s forward schedule, but we hope it will be considered during the course of the Commission’s work.
There are formal – and honestly, complicated – channels for NDIS participants and others to make complaints about workers who are registered through the Scheme, primarily through the NDIS Quality and Safeguards Commission. Like in the gig economy, there are also opportunities to provide more informal, peer-directed feedback and ratings on the quality of service provision (e.g. Clickability). Women in immediate risk should always be encouraged to contact the police, and in most Australian jurisdictions police report striving to be responsive to people with disabilities, but we must acknowledge there are serious systemic barriers to justice.
Much greater effort at state and national levels needs to be put into ensuring the channels available for making complaints and reporting violence are clear and easy to understand and access. Channels must be available to people who are at highest risk of being targeted by people who choose to use violence, including women with little or no speech, or those without independent access to the internet and phones.
Will gender equality strategies influence the market model?
The passing of Australia’s first Gender Equality Act by the Victorian Parliament in early 2020 is ground-breaking. By this time next year, the Act is expected to impact 11 per cent of the state’s workforce, those in the public sector, requiring them to be gender transformative (that is, to contribute substantively to gender equality). Alongside this, the national blueprint for the prevention of violence against women, Change the story, is being promoted to workplaces in the private and public sectors as well as a range of educational and recreational environments.
These are valuable steps towards gender equality, but it is challenging to imagine how they will reach the majority of the disability workforce, which remains relatively detached from government levers. The disability workforce today comprises many sole workers who may be unregistered and/or unregulated. The background to this is that as institutions closed, leaders of the disability rights movement had every reason to say they did not want to recreate institutions in the community. Advocates called for the opportunity to choose workers who were not indoctrinated in institutional thinking. This position holds today, and for some, the right to choose has been gained, but this is another area of the Scheme where equity and safety come into question.
Further attention is needed in a number of areas
As well as the areas highlighted above, there are several additional issues that warrant further consideration.
There is much still to be learned about how the NDIS is supporting – or failing to support – women with disabilities to fulfil their roles as mothers and primary carers. There are persistent negative stereotypes about the capacity of people with disabilities to parent, and to parent well. How this plays out in the Australian context was highlighted last year in the ABC’s We’ve Got This radio series.
Access to sexual and reproductive health services and education for people with disabilities had received some attention from states and territories. As these jurisdictions step away from performing these service provision roles, there is reason to assess service availability and access
Little consideration has so far been given to the experiences of non-binary and gender diverse people with disabilities with the NDIS. While our article has focused on the experiences of women and girls, we don’t yet have enough data to consider the different impacts of the Scheme on trans-women or gender-diverse people. There were indications some time ago that the NDIA has been developing a strategy around its engagement with people from LGBTIQ communities but as far as we know this has not yet been finalised. Significantly more work will be required around ensuring LGBTIQ inclusion and promoting safety across all aspects of the Scheme.
Funding access and equity into the future
Finally, sufficient, sustainable funding remains a key concern in relation to Scheme access and equity. Although there are assurances from government that the NDIS is a demand-driven system and current demand is fully funded, we know many people are missing out on the services they need in an appropriate timeframe.
Cutbacks to NDIS funding are a constant threat, and observations from Jen’s research in England and Sweden reinforce the idea that individualised systems are prone to austerity measures. It is therefore understandable to be cautious that the initial ‘cash-splash’ of the NDIS may decline. If it does, we might expect that advocates’ attention turns to defending essential services, and with it media and community interest – with gender equality further overlooked.
Our final thoughts
Remembering, and building on, the incredible work and lessons from the feminism and gender equality movements is as critical this week as ever; as is recognising the continued strength, activism and advocacy from the disability rights movement.
The NDIS is now more than five years old. For its next five years, and further into its future, securing genuine inter-departmental and cross-sector focus and collaboration around equity for women and girls with disabilities will be critical. This is essential for improving NDIS outcomes and making the most of the opportunities it presents, as well as progressing gender equality for women and girls with disabilities across Australia.
For support with domestic violence and sexual assault, contact 1800RESPECT.
To learn more about the current Disability Royal Commission and how you can share your stories, visit https://disability.royalcommission.gov.au/.
This post is part of the Women's Policy Action Tank initiative to analyse government policy using a gendered lens. View our other policy analysis pieces here.
Posted by @SusanMaury @GoodAdvocacy