The NDIS: Choice, Control and Isolation

The proposed cuts to the NDIS will be worn by two large groups of people in society, the participants, people reliant on the NDIS for funding necessary services, and care workers who are already wearing the cost of the lack of funding through unpaid travel time, unpaid gaps between shifts and lack of safety and security in their workplaces. Workers and participants in the NDIS have a lot more in common and have shared interests in advocating for democratically run disability services that supports them both. This article discusses the plight of care workers as both connected to the plight of NDIS participants, and devalued as the most expendable workforce in Australia.

Both workers and participants under the NDIS are impacted by poor workplace safety and security. The Health Services Union states that a market based model doesn’t lead to the delivery of consistent, high- quality care. Care work is based on empathy, patience and is highly relational in its nature. These qualities of care are not necessarily replicated or valued by the NDIS model.

Before the latest round of government cuts to the NDIS, there were people with high needs had their funding cut, leading to them skipping meals and neglecting their showering and personal care. Dual Paralympic swimmer Esther Overton says due to a mistake in her funding she was living on two meals a day, going 15 hours without going to the toilet, and being forced to go to bet at 5pm every night.

This is an example of what occurs when care is placed in the hands of the market with no control by either the worker or the client. Ms Overton has no say over the decision making that affects her care and had to wait 5 years for a funding review. One participant has likened the relationship to the NDIS as the same as being subjected to domestic violence. The power is in the hands of a fragmented, unstable and unsafe system of providers and administrators and government bodies, where it should be in the hands of the care workers and the clients.

Deliberate Isolation

The cuts to community access will further affect both participants and workers, limiting essential trips like medical appointments and shopping, and leading to a higher staff turnover, unsafe work and the devaluing of time taken to form caring relationships that are beneficial for both the person in need of care and the care worker. The isolation of participants is a deliberate act of control.

The isolation of workers is deliberate, as a workforce that competes for shifts and never meets each other cannot collectively organise for better conditions for themselves or properly advocate for the needs of those they care for. Care planning is often undemocratically completed by the care organisation, not the participant or the carer.

Solidarity has always been the greatest threat to employer power, and building solidarity with fellow care workers is impossible if you don’t know who they are. Instead, care workers compete against each other for shifts in a deregulated labour market where insecurity is built into the structure of care itself. Ultimately this affects the people being cared for and lowers the quality of care.

When care becomes a market

We need more care that is based around community and social relationships. Workers are caught between having to act like a business owner with their own ABN and take on all the liability of having a business, whilst at the same time complying with increasingly complex and regulatory systems. Care workers are practically gig economy workers, employed casually, with no sick or annual leave or other benefits of permanent work. Workers often work split shifts and sleep over shifts which means 8 hours of work is practically unpaid. There is a focus on workers having to market themselves to get enough shifts to survive.

There is also a lack of training in the workforce under the NDIS, dangerously coupled with a lack of information provided about the clients. The transient nature of the work means that workers do not develop bonds either with other workers or with the clients. This is bad for participants who are denied the safety of familiarity. This also means working conditions are often exploitative. As previously discussed, workers that connect with each other are more likely to discuss their conditions and collectively change them. This rarely happens as workers are treated as sole traders that juggle several clients, several different apps or platforms and several different employers. Care has become a market to deliberately isolate care workers to benefit employers.

Regulation

Along with being insecure, Care work is highly regularised. The government is trying to crack down on unregulated providers, which don’t have to comply with training or WHS regulations. The regulations are worn solely by care workers. On the other hand regulating providers makes it harder for families of people with a disability to seek care without becoming a part of an organisation, when becoming part of an organisation more often decreased the quality of care provided.

The level of regulation required by the government also puts an added stress on the care workers through behavioural monitoring and compliance reporting and care plan tracking that doesn’t necessarily increase the quality of care for the person they are caring for, but takes a significant amount of time out of quality time spent with the client. Ironically some of Mark Butlers reasoning for cutting funding for community access is that care workers are often spending time looking at their phones rather than with the clients. Carers report adding 1-2 hours of unpaid labour in paperwork that they didn’t get a chance to complete during their shift.

Emotional Labour

Care work relies on empathy trust and building relationships. When care workers are treated the same as any gig economy workers these relationships are not built with the client or fellow workers, nor is time and stability valued in a clients care.

All risks are also shifted downwards onto the workers, not only through an increasing amount of reporting and paper work, but also through unpaid travel time, insecure work, unpaid cancellations, self-funded training, self-funded clothing, and car maintenance. Workers also bear the risk of something happening with no real support person to contact, especially after hours. Workers bear all personal and legal responsibility if a health condition arises. This leaves workers being both over managed and under supported, as well as having less support but more control over their actions.

According to the United Workers Union (UWU), only 1 out of 5 workers have reported a positive experience under the NDIS. Workers report unpaid travel time over long distances, unstable hours and having multiple jobs, unpaid labour including administrative duties and constant changes to the roster. Workers also reported exposure to violence including biting, spiting and physical attacks,

Safety

Care workers are seen as expendable and replaceable. In 2018 the NDIS incorporated psychosocial disability and mental health, whilst scrapping other funding for these vulnerable people. When people with complex behavioural needs are pushed into the disability market of the NDIS, there is a lack of social support and therapy. This is isolating, destabilising and unsafe for both care workers and clients.

Care workers operate in isolated working environments and are often alone in client homes without institutional backup of a supervisor or an oncall number to call for advice. There is no duty of care for a safe workplace from organisations, all risk is shifted downwards to individual workers and not the care providers.

Recent changes to the NDIS have led to a crackdown on unregulated providers. This has not led to safer work conditions for care workers. The enforcement of safety guidelines and practice standards are weak Privacy legislation meant to protect the clients means care workers are often attending participants homes with very little information about the participant. WHS obligations are ambigous in people’s homes as they function as both workplace and private territory.

The gap between policy and material safety conditions leads to workers injuries and violent deaths. When a participant dies there is an inquiry, but care workers deaths go without any proper investigation. Care workers are therefore the most expendable of any other workers in Australia. In the construction and mining industries, a workers death is called industrial murder and often leads to a massive fine for the employer and an investigation of safety legislation. Apart from the unreported research done by the United Workers Union, no investigation is done about safety for care workers.

The NDIS fragments care into individualised consumer relationships. Workers work as independent contractors amongst dispersed sites. The NDIS has structured the workplace this way deliberately, so all risks are shifted downwards to the workers, individual workers manage all the risks and workers cannot gain collective worker protection, organise through unions for better conditions, or discuss or improve their safety.

Gendered Violence

Between 70-75% of the disability support workforce are women, according to the Fair Work Commission. Women make up 47% of the broader Australian workforce.

This feminised care work puts women increasingly at risk in the workplace, where their workplaces consist of participants domestic homes. 38% of workers reported by the United Workers Union (UWU) as having experienced violence at work. 84% of workers reported the extreme impacts of understaffing lead to more dangerous conditions. Care work places women with participants who have complicated behavioural patterns, and sometimes violent histories with inadequate training on non-violent intervention or information.

Velvet was found dead with injuries at the property of Wael Abdullah Saleem Alfar who she was caring for on January 12. She is the first in Australia’s femicide count. Alfar had a ‘violent criminal history’ noted at his bail hearing yet was receiving NDIS funded care. NDIS failed to provide Velvet with a safe workplace and failed to prevent her exposure to danger. Velvets death highlights how care gets organised, gendered, isolated, and doesn’t protect workers. This is a workplace death, an industrial and political failure that resulted in the loss of life. Jacqueline King, General Secretary of the Queensland Council of Unions (QCU), states

“Every worker and their family have a fundamental right to make sure they can go to work safely and return home safely every day”

According to the UWU 38% of care workers have been denied that right.

Safe secure, Respected.

Last year the UWU launched the safe, secure respected campaign for NDIS workers. It was to campaign for fair wages, an end to wage theft and full pay for every hour worked, secure permanent jobs with consisting hours and stability, safety from harm and respect and recognition for the mental and physical toll that care work has on the worker.

The way the NDIS is structured, care workers are expendable and replaceable and this has a heavy cost on both the care workers and the people they support, with reforms geared towards decreasing workers security. Allowing flat rate cuts to peoples funding for community participation will lead to increased isolation for clients and less shifts for workers, with work being focused on medication and personal care. The minister can decide to cap funding across the board including worker to participant ratio’s, leading to a decrease in safety for both workers and clients. According to the UWU 84% of care workers point to understaffing as increasing the level of danger in the workplace.

The NDIS has transformed care work into a market commodity. Care workers are forced to compete for shifts that are split, involve unpaid travel time, are underpaid, isolated and unsafe. I have discussed the failures in the NDIS system grouped by isolation, regulation, the toll of emotional labour, safety and respect. Until both care workers and participants are given equal and democratic access to the decision-making processes that directly affect them, the system will continue to fail both workers and the people they care for. Only when care is based on relationships, solidarity, stability and safety rather than bureaucratic regulations will participants and workers be safe.

Care workers need to be supported to collectively organise. Communities need to be built based around care. Care workers and Participants are being failed while employers are allowed to build isolating structures.

On paper the NDIS values freedom of choice, safety, community, dignity, and autonomy. Freedom of choice disappears when funding is capped, and there is a high turn over of care workers that limit stable social relationships, especially when the area of funding being cut is the freedom to access communities, the freedom to work and the freedom to build social relationships. The latest NDIS budget cuts have left participants fearful that they won’t be free to live, let alone work, shop, or attend medical appointments.

As it stands the NDIS continues to neglect participants and isolate workers, producing insecure work, exploitation and preventable violence. Workers and participants need access to the decision making processes to shape the conditions of the care themselves. Real improvements to the NDIS will come from workers and participants organising together for safety, secure funding and a care system based on solidarity and connection.