Many Australians with disability feel on the edge of a precipice right now. Recommendations from the disability royal commission and the NDIS review were released late last year. Now a draft NDIS reform bill has been tabled. In this series, experts examine what new proposals could mean for people with disability.
Authors
Sophie Yates
Research Fellow, Crawford School of Public Policy, Australian National University
Laura Davy
Lecturer, Crawford School of Public Policy, Australian National University
Recent media coverage about the National Disability Insurance Scheme (NDIS) frames the choices of people with disability as threats to their safety or the safety of others. Such reports suggest participants who use unregistered providers could be putting themselves in harm's way. Or that some participants - such as those with criminal backgrounds - pose unacceptable dangers to support providers.
But research shows choice and safety are not at odds when it comes to disability support. What does this mean for the recommendations from the review of the NDIS - especially given its push for evidence-based practice?
Choosing services and who provides them
Part of the original thinking in developing an NDIS structured around principles of choice and control was recognising that not having those things puts people with disability in more vulnerable situations. Research indicates people with disability are more likely to be safe and free from abuse when they have choice over what services they receive and who provides them.
Previous research by one of us (Sophie) also found some people feel safe as a result of having more choice.
When we interviewed people about why they use unregistered NDIS providers, most described feeling more secure when they were able to choose the right people for the job - those with the right attitudes and skills. One told us:
Safety for me means being able to work with people that I know have relevant qualifications and people that are embedded in my community.
This means being able to look beyond whichever providers happen to be NDIS registered and available in their area. Some people feel less safe with registered providers if they've had bad experiences with them before or they aren't sure who the provider will send each week.
People we interviewed also talked about how they select their support worker team for themselves or their family members via interviews, trial shifts and reference checks. This builds a sense of whether the relationship will work or not.
Limited service options, particularly in regional, rural and remote areas, place people with disability in disempowering and risky positions. They may be dependent upon one provider for essential services.
Reforms that restrict participant choice could have a detrimental effect on many people's NDIS experiences.
There is more than one way to support safety
Regulatory oversight is just one (albeit important) piece of the safeguarding puzzle. Choice - which promotes safety - is best supported when participants are informed, empowered, and have a range of people to go to for help, including when things go wrong.
Laura's recent research found many in the disability sector, including people with disability, family members and advocates, view the NDIS commission's complaints processes as inaccessible and difficult to navigate. One disability advocate pointed out:
You shouldn't need an advocate to liaise with the body that has the responsibility of safeguarding your rights and protection.
Unfortunately, the NDIS review had relatively little to say about strengthening the complaints processes.
It did make other quality and safety recommendations that have not received the same degree of attention as the controversial recommendation on mandatory provider registration. These proposals should not be allowed to fall by the wayside.
One recommendation is to invest in "nationally consistent access to individual disability advocacy services" so Australians with disability all have a right to speak up for what they want and need. There are also recommendations to help all people with disability to navigate NDIS, foundational and other services and increase decision-making support.
The recommendations to diversify housing and living supports are critical for expanding both choice and safety.
What about worker safety?
The disability support workforce has a high proportion of female and low-paid workers. They face increasingly insecure employment arrangements. These workers experience different pay and working conditions depending on the provider they work for and industrial award they are employed under.
Since the introduction of the NDIS, there has been a rapid rise in gig economy-style employment. NDIS participants can use online platforms to employ sole-trader support workers rather than going through agencies. Some self-managing participants also choose to directly employ their support workers, effectively becoming small businesses in the process.
Gig economy work potentially involves risks for workers, as well as participants, because there isn't any oversight or monitoring. That said, workers employed by disability service organisations also report low levels of confidence in organisational safety and reporting systems.
All of this points to the need for strategies to build and retain a high-quality, well-paid and safe workforce. This was noted in the NDIS review and the government's draft National Strategy for the Care and Support Economy released last year.
What could support safety for everyone?
Rather than assuming choice and safety are in opposition to each other and further restricting choice, our research suggests the following priorities:
- clear complaints pathways, with "no wrong door" referral models so people don't miss the chance to lodge issues
- accessible and responsive formats for submitting complaints
- accessible and up-to-date information so people know their rights, can navigate the NDIS and choose providers
- peer support with resources to promote these networks.
Both NDIS-specific and mainstream safeguarding institutions such as police, health authorities, consumer bodies and community services, need to build their capacity to listen and respond to people with disability.
Lastly, we need to foster "natural safeguards" - the relationships with family, friends and the community that keep everyone safe (not just people with disability).
Safety is about being connected and embedded within the community, where many people are looking out for you, checking in on you and noticing if you don't show up to your usual activities. Supporting all people with disability to build and sustain these relationships should be a priority.
NDIS participants and workers face distinct challenges but the voices and concerns of both groups need to be heard and addressed by service providers and government. Ultimately, a scheme where people with disability are empowered to make meaningful decisions between quality services, and workers are valued and supported in their roles, will promote safety for everyone.
The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.
