NDIS General Issues Inquiry

A personal submission by Dr George Taleporos

People with disability are diverse and it’s important that the recommendations of the NDIS review reflect our diverse needs and preferences.

I am writing to the NDIS General Issues Inquiry because I want to ensure that the recommendations of the NDIS General Issues Inquiry reflect the needs of people with disability who self manage or plan manage our NDIS plans and rely on unregistered providers without disability qualifications to meet our daily support needs.

While I recognise the benefits of registered providers for people who choose them, and that some people prefer their workers to have disability qualifications, it is also important to recognise the importance of choice and control from the perspective of a self- managing NDIS participant and our right to decide who provides our support.

It is also important to recognise our right to dignity of risk, to make decisions for ourselves and learn from the outcomes of our decisions.

About me

I have a progressive neuromuscular disability since birth and I have worked in the disability sector for 25 years. I managed a statewide advocacy service for over 10 years, worked as a policy manager for over 5 years and continue to work in the disability field in a variety of roles including as a policy analyst and communications producer at the Summer Foundation. I am a member of the NDIS Independent Advisory Council and a non-Executive Director of a registered disability service provider. I am also a board member and peer support workshop leader for the Self Manager Hub, a disability led organisation for people who self manage our NDIS plans. I hold a PhD in psychology, honours in sociology, a Graduate Diploma in educational psychology and I am a Graduate and member of the Australian Institute of Company Directors.

I rely on support 24/7 that is carried out by unregistered workers who do not have disability qualifications. Without these workers I would not be able to survive. They assist me with my most basic needs including eating, drinking, washing, enabling me to use my wheelchair, my ventilator and my suction machine.

Why I use workers without disability qualifications

I have been self managing my support for over 20 years. With the support that I receive from unregistered providers without disability qualifications, I am able to live a good life in the community, work, contribute to Australian society and pay taxes. These workers are integral to my life and their job satisfaction, working conditions, training and development are very important to me. If my support workers are unhappy or in any way unsatisfied with their work, this is something that I work hard to address. It is a reciprocal relationship, where clear and open communication is key.

Why I use workers without disability qualifications

To work with me, my workers receive on-the-job training delivered by myself and an experienced member of my support team. It takes weeks for them to learn the skills and knowledge necessary to support me.

The skills and knowledge are specific to me and my needs and are not obtainable in any generic vocational course in disability. In fact, generic disability qualifications can be an impediment to the worker providing support in the individualised way that I need my support to be provided. Generic disability qualifications are usually taught by able- bodied people and teach students that they are the expert, when in fact, it is the disabled person themselves who is the expert in our own support needs.

I have found that the current approach to training the disability workforce is built on 2 false assumptions that need to change. These assumptions are:

• That able-bodied people know what’s best for us and
• That people with disabilities are all the same and have the same needs.

These false assumptions underpin the current ineffective training system that has a one size fits all certificate, delivered by able-bodied people.

As a result, we have so-called “qualified” staff who think that they know what’s best for us. “Qualified” staff too often think that they are the experts and fail to listen to us, failing to recognise that we, disabled people ourselves, are the experts about how to support us. It’s not the support workers’ fault, it’s what they are taught and it is the unfortunate consequence of what often happens when we attempt to professionalise an occupation without codesign principles, without the consumer at the centre. The provider becomes the expert and the consumer becomes the disempowered subject.

A recent research study into what quality support looks like from the perspective of people with disabilities found that, to provide quality support, disability support workers need to recognise the person with disability as an individual and the expert in their

Why I use unregistered providers

These are some of the key reasons why I use unregistered providers:

-   I can pay at a higher rate which is necessary to attract and retain staff – as a result of self-management and engaging my workers directly, there is no middle person between myself and the worker and therefore more of my funding can go directly to the worker. Higher rates attract more candidates and workers are more likely to experience greater job satisfaction and stay longer if they are earning more. The work is complex and demanding. It takes a lot of effort and time to train a new worker so it is important that I keep turnover down to a minimum.
-   I want to decide who comes into my home and who provides my support. I am only guaranteed this if I directly engage my workers.
-   I want to have direct communication with my workers. Going through a third-party, such as a registered provider, makes communication more difficult and time-consuming. It is also less personal, less effective and more bureaucratic and increases the chance of misunderstandings taking place.
-   I need to be in control of my life and I want to be the one making the decisions related to my life. Registered service providers need to be in control and make decisions and as the employer, that is both their right and responsibility. Handing over control to a registered provider is not a suitable option for me. Self- management has served me well for the last 20+ years.

A recent study into the use of unregistered providers highlighted the importance of this

option for many NDIS participants.

The option to choose unregistered providers was about empowerment and exercising choice and control - in other words it was fundamental for achieving effective service provision arrangements through the NDIS.

Participants in the study described advantages associated with using unregistered support workers, including increased flexibility with shift times, having choice of workers, having consistency of workers, being able to set worker wages, being able to move away from ‘agency rule book’ limitations, and increased empowerment and control within the support interaction.

The study found several participants who had negative experiences with support workers from registered agencies and felt safer and better supported using unregistered workers they were able to choose. This is something that I can strongly relate to. The following excerpt from the study also rings true for me:

    "In addition, many participants communicated that they actively avoided purchasing services from registered providers where possible. They felt at greater risk from coordinators at registered providers who often acted as gatekeepers around staff and times of shifts, and frequently sent 'just anyone' to work a shift (including workers unknown to clients). Participants noted that having no connection with support workers increased their sense of risk and anxiety. Further, the immaturity of the disability market (often referred to as 'thin markets') also meant that if participants did not use unregistered providers, they would have to go without services in some areas." Page 3.

What would be the impact on people with disability of forcing us to use unregistered providers and/or workers with disability qualifications?

Thousands of Australians with a disability have choice and control over our support by deciding for ourselves, who is best suited to support us. If our right to decide is taken away, there would be very serious consequences. Forcing us to use registered providers or workers with disability qualifications would undermine the principles of choice and control that are central to the promise of the National Disability Insurance Scheme.

It would adversely impact on our quality of life and our ability to engage supports that enable us to be more fully included in the community, socially and economically.

would be a serious step backwards in the upholding of human rights and self- determination for people with disabilities.

We have the right to dignity of risk, choice and control and to be treated as adults who can take responsibility for our own decisions.

In my life, I have only been able to receive the care that I need by self managing my support and engaging unregistered providers.

Many of us have taken on self-management having been rejected by agencies (because our needs were considered too complex) or because agencies were unable to meet our needs. Some of us do not have any suitable registered providers in our local area, or we have specific needs that existing unregistered providers are unable or unwilling to support. If we were not allowed to self manage it is possible that we will have much less effective support or, in some cases, no support at all.

Some of us will be left without support or with unsuitable support options

Many workers do not want to work for an agency and are not prepared to experience a reduction in their hourly rate. It is a serious concern that many will leave the sector if they are forced to work for a registered provider or to register themselves. It is already very difficult to find support workers and any changes that will reduce the number of people working in the sector must be avoided.

The consequences are especially serious for people with disabilities in regional and remote areas and marginalised communities. It is already the case that people’s cultural background, interests and culture are often not reflected in available workers. This is widely recognised for marginalised groups including First Nations people, Culturally and Linguistically Diverse communities and members of the LGBTIQ community to name a few. Removing access to unregistered providers in already thin markets, such as rural and remote locations and also in under-represented cohorts, will intensify the challenges of finding workers who are appropriately and sensitively matched to people’s eeds.

By limiting our options, our safety is at risk

We must consider the impact on safety by removing access to effective workers who want to work flexibly and making it harder for people with disabilities to find support when we need it.

Abuse, violence, neglect and exploitation against people with disabilities is more likely when people with disabilities do not have choice over who supports us and when we are not empowered to escape from a violent and abusive worker or provider. Reducing our

Recommendations to the NDIS General Issues Inquiry

options around who can provide us with support will put us more at risk of neglect, exploitation, violence and abuse. If our choices are restricted, abusive and violent workers will have more power over our lives and we will have less power to find other people to provide the critical day-to-day assistance that we need to survive.

Recommendation 1:

Ensure that people with a disability are able to self manage our support, including the option to choose unregistered providers and workers without disability qualifications. DO NOT force us to use workers who are registered and/or have disability qualifications.

Recommendation 2:

Fund peer support and capacity building for people with disabilities to build our capacity to self manage and to understand and manage risk.

Helen Dickinson and colleagues from UNSW recommend3:

   "Building the capacity of NDIS participants and plan nominees so they are clear
  what should be expected of services and what to do in situations of bad practice
   or misconduct would be a good way to help with quality and safeguarding issues
  across both registered and unregistered providers. Further, empowering
   participants and nominees to better operate choice and control over their
   services would have broader benefits for the overall effectiveness of the
  scheme." 

The government should invest in training people with disability to:

• recognise and report violence, abuse, neglect and exploitation
• assess our workers’ abilities to do the tasks to the standard that we require,
• understand industrial law and the differences between an employment and a contractor relationship
• understand our responsibilities as an employer and contractor
• support our workers to do their best work and feel valued and committed to working with us.

3 Dickinson, H., Yates, S., & West, R. (2022) Exercising meaningful choice and control in the NDIS: Why participants use unregistered providers. Canberra: University of New South Wales, Canberra. Page 25.

Recommendation 3

Put people with disabilities at the centre of developing the disability workforce.

Putting people with disabilities at the centre starts by supporting us to develop a training plan for our workers. This plan should clearly describe what we need from our support workers and the capabilities that the workers would need to support us well. The training plan should be individualised with the needs of the disabled person front and centre.

We need a disability workforce with the right attitudes, values, skills and capabilities to deliver support effectively, safely and in a way that supports us to achieve great outcomes. What these skills and capabilities look like will vary greatly depending on the person, our goals, our capabilities and the kind of support we need.

So we need to transform the current system, do away with a one size fits all qualification where able-bodied people are seen as the experts, making the decisions about the training that our workers need.

Recommendation 4

Support people with disabilities to develop and deliver training. There should be support to develop and source relevant courses including microcredentials. Microcredentials would provide a fast and effective way of teaching specific skills that are unique to the person’s support needs. For example, how to use a ventilator, a wheelchair, a communication device or a catheter. If the existing courses are poor quality or don’t exist, there would be support to codesign courses with people with disabilities and other experts.

Recommendation 5

Support a diverse workforce with a range of employment models including registered and unregistered providers, direct employment by people disabilities, independent contractors and online platforms. Each model is needed to attract the workforce required in communities around Australia and to meet the diverse needs of people with a disability. It is important that the Commission recognises the vested interests of some large registered providers advocating for a one size fits all requirement of mandatory registration, forcing all NDIS participants to use their services and in doing so, eliminating their competitors and reducing choice for NDIS participants.

Conclusion

We advocated for an NDIS that shifted the power from providers to people with disabilities. This can only be achieved if we can decide for ourselves who provides our support.

Some people with disability want their providers to be registered and to have certificate level disability qualifications.

It is important these needs and preferences are respected.

At the same time, some of us need access to unregistered providers and to choose workers without disability qualifications. Others need a combination of these options.

The key message of my submission is that all of these options should be available, blanket rules around qualifications and registration should not be applied or mandated in the disability sector. Doing so would infringe on our rights, limit our choices and increase our risk of violence, abuse, neglect and exploitation. The current quality and safeguarding framework that enables self managers to choose who supports us must be maintained.

People with disabilities are diverse with different needs and preferences that must be recognised and respected. That is our right and what we fought for, when we advocated for an NDIS based on the principles of choice, control and individualised support. It is essential that these principles are respected and upheld in the recommendations of the NDIS General Issues Inquiry.