The NDIS Review Failed Us – Will the provider and worker registration taskforce come to our rescue and uphold our human rights?

Last year, the NDIS Review made recommendations to take away our rights to decide for ourselves who provides our support.

This analysis is a call to action to the NDIS Provider and Worker Registration Taskforce to protect choice and control in the NDIS and work with people with disabilities to build a quality and safeguarding framework that recognises our human rights and our individual needs and preferences.?

I examine the human rights implications and the underlying assumptions of the proposed changes to the NDIS Quality and Safeguarding Framework put forward by the NDIS Review. I consider the impact this proposed approach could have on participant choice and control. I recommend solutions for what is really needed to improve participant safety while maintaining our rights to decide for ourselves who provides our support.

I urge the Taskforce to listen to the voices of our community and protect the key NDIS principles of choice and control. We have fought for far too long to be incharge of our lives. Our dignity and autonomy are at stake.

The current risk proportionate and graduated framework

A proportionate risk approach is built into the current quality and safeguarding framework, so it is misleading that the NDIS Review describes this as a new approach. What is different in the recommended changes, is how proportionate risk is determined.

The current proportionate risk approach applies a different level of safeguarding depending on whether the person has chosen and been assessed to be capable of plan management or self-management. People with restricted practices must be agency managed. The focus is on the individual’s personal needs, risks, circumstances and preferences.?

Self-management and plan management are the financial administration options that enable participants maximise our choice and control in the NDIS. Currently, over 90% of NDIS participants choose one of these financial administration options. However, the NDIS Review wants to dismantle the current risk proportionate and graduated approach.

NDIS Review Action 17.3 says:

The Australian Government should amend the National Disability Insurance Scheme Act 2013 to remove the link between a participant’s financial management of their plan and the regulatory status of their support providers.

If Action 17.3 is implemented by the government, NDIS participants who choose the option of plan management and self-management, and who have successfully passed the related risk assessment, will lose the right to choose unregistered providers.? This action effectively removes any benefit of choosing these funding administration options and will result in the same oversight and safeguarding requirements applying to all NDIS participants, despite our very different needs and circumstances. If this action is implemented, it will destroy self-management and participant choice and control in the NDIS. In its place, it proposes a safeguarding framework that treats all participants the same regardless of how our plans are managed.

Check out my podcast with University of New South Wales Professor Helen Dickinson that examines why NDIS participants choose unregistered providers

We need to recognise the diversity of NDIS participants

To develop effective disability policy, it is essential to recognise the diversity of people with disability. These differences extend far beyond our impairments and include our diverse needs, preferences and capabilities.? They also include differences in informal support networks, differences in capacity and capability to understand and manage risk and differences in our ability to speak up for ourselves. Recognising these differences is especially important when developing policy related to quality and safeguarding.?

Consider these illustrative examples of two participants:

Jennifer is a 16-year-old with an intellectual disability, she has severe communication impairments and does not have any family or friends. She was previously living in a group home where she was assaulted by a housemate. This led to a change in her living arrangements and she has been living on her own in a residential service with 24/7 support ever since. Her housing and support are provided by a single provider. Jennifer’s NDIS plan is agency managed.

David, is a 40-year-old with a severe physical disability who has 24/7 support in his own home, where he lives with his partner. He works as an accountant and has a strong network of family and friends. He self-manages his NDIS plan and this enables him to directly employ the support workers so he can choose his own workers and pay them at a higher rate than would be possible if they worked for a traditional provider. He requires high intensity, one-to-one support and assistance, including bowel care. He trains his workers himself and has produced training videos for all new workers to learn how to support him. All new workers also undertake shadow shifts with his more experienced workers. Self-managing and directly employing his support team enables him to have a consistent team of support workers rather than a revolving door of workers as had been the case when he was with a large registered provider. This individualised arrangement made possible through self-management and direct employment costs significantly less per year than the arrangement that he had when he was with a registered provider.

Currently the NDIS Act (2013) enables David to have the flexibility of directly engaging his supports and developing individualised arrangements by self-managing his NDIS plan. Jennifer can have additional oversight and safeguarding by accessing registered providers that are mandatory if she is agency managed.?

Under the current quality and safeguarding framework, agency management is the default funding administration option. NDIS participants need to apply to opt out of agency management (to choose either self-management or plan management) and pass a risk assessment demonstrating that the participant or their nominee can safely take on the risks and responsibilities of self-management or plan management. The current system, which enables different levels of safeguarding, depending on how our plan is managed, meets the needs of participants who require higher levels of safeguarding and oversight. It also provides participants with greater capacity to take on risks and responsibilities, the freedom to choose our providers, registered or unregistered, upholding our rights to choice and control.

The NDIS Review wants to change this so that Jennifer and David are treated the same by the NDIS quality and safeguarding framework. The changes they are proposing shift the focus to "support type", ignoring the individual preferences, capabilities, and circumstances. Both David and Jennifer will be treated as if they need the same level of safeguarding and oversight, because they would both be categorised as using "medium risk" support (see page 212). The NDIS Review fails to recognise that while both require "intensive one-to-one support in the home", their individual needs for safeguarding and oversight are very different.

Support type is not a suitable basis for defining risk

The NDIS Review approach to proportionate risk focuses on the “support type” while ignoring the person and their individual needs and preferences. This approach is inconsistent with a human rights framework and it is not in line with contemporary approaches to safeguarding. Best practice approaches to quality and safeguarding recognise the diverse needs of individuals and ensure that our rights to make decisions for ourselves are upheld.

By ignoring individual personal needs and preferences, the proposed framework cannot cater for the very diverse needs of our community. It is a one-size-fits-all approach that does not reflect the principles of individualised support and choice and control that were the promise of the NDIS, and that are necessary to deliver high quality, personalised support.

For a quality and safeguarding framework to work across the diverse needs and circumstances of the disability community, proportionate risk judgements should be made in relation to the individual need for oversight and safeguarding. Understanding individual needs involves consideration of a range of factors including, our capacity and capability to understand risk, our ability to advocate for ourselves, our support network, and the context within which our support is provided (a closed setting like a group home or an individualised arrangement in the community). The framework must also uphold our rights to make decisions about our own lives.

Restricting NDIS participants to registered providers is unjustified and inconsistent with our human rights

The NDIS Review 1000+ page "supporting analysis" document provides a disturbing narrative in its attempt to justify forcing NDIS participants to use registered providers.

Page 916 of the "supporting analysis" document says:

"While we acknowledge that participants value access to the unregistered provider market, the current approach of allowing providers to largely opt out of registration and regulation leaves many participants potentially exposed to high levels of risk without appropriate preventative safeguards - particularly participants who have complex needs or circumstances. This puts the onus of managing these risks on individual participants, which is an inappropriate burden for many."

So, the NDIS Review says that while it recognises people with disabilities want to be free to choose our supports, it doesn't want us making those decisions for ourselves because it believes it is "inappropriate" and "a burden". It also misleads by saying unregistered providers are not regulated. Unregistered providers are subject to the code of conduct and can be fined and banned by the regulator. They are also subject to Australian Consumer Law. Under Australian Consumer Law, if you buy a service and it is not provided to an appropriate standard you are protected by ‘consumer guarantees’ and they apply to all goods and services, including services purchased with NDIS funding.?

Natalie Wade, Taskforce Chair reminds us that unregistered does not mean unregulated in my recent Summer Foundation Reasonable & Necessary podcast below:

The disability rights movement has fought for decades for disability support systems where people with disabilities are in control of our lives and are able to make decisions for ourselves. The NDIS Review fails to recognise that it is entirely appropriate that adults with disabilities decide for ourselves who provides our support. It is not “a burden”, it is something that we choose when we apply to self-manage or plan manage our NDIS plans. It enables us to be in control of our lives, of who comes into our homes and who touches our bodies. Individualised support and being free to choose who provides that support is associated with better outcomes and greater satisfaction. Research shows that the ability to choose our services increases the likelihood we receive the services we want and need. This intern increases the quality of our services and our quality of life.

The disturbing narrative of the NDIS Review is that while people with disabilities want control over who provides our support, it says that many of us are not capable of making decisions for ourselves and so none of us should have the right to freely choose our supports.

The NDIS review narrative personified sounds like an over controlling parent speaking to an adult child saying: We know that you want to choose unregistered providers but we're going to put a stop to it. We don’t think you are capable of deciding for yourself what supports you need or what supports work for you. We are taking away your right to choose and you will accept what we think is right for you.

By taking away our right to decide who provides our support the NDIS Review infantilises adults with disabilities and contravenes Article 3 and Article 12 the UN Convention on the Rights of the People with Disability. Article 3 outlines the fundamental principles of respect for individual autonomy including the freedom to make one's own choices, and independence of persons. Article 12 states that people with disabilities should enjoy legal capacity on an equal basis with others in all aspects of life. This includes the right to make our own decisions and to have those decisions respected.

The NDIS Review fails to recognise the importance of "Dignity of risk" and our right to take risks and make choices that may involve some level of uncertainty or potential harm, as long as those choices are made freely and with informed consent.

People with disabilities should not be restricted from making decisions about our own lives. We have the right to take risks, make choices, and experience the consequences of those choices as any other person. The NDIS review recommendations violate our rights to autonomy, freedom and empowerment. It fails to recognise us as capable decision-makers and assumes that we need a government bureaucracy to keep us safe.

Registration does not keep people safe

The NDIS Review assumes that registration delivers quality and keeps people safe without providing any evidence that this is the case. If this were the case, why have so many people suffered abuse, violence, neglect and exploitation at the hands of registered providers? Police and coroners reports as well as years of research and Royal Commission hearings clearly show that registration does not keep people safe. The tragic deaths of Kyah Lucas and Anne-Marie Smith are just two amongst many examples of NDIS participants subjected to horrific violence, abuse, neglect and exploitation at the hands of registered providers. Research shows that many self managers have chosen to directly engage and train unregistered providers because of unsafe and abusive experiences using registered providers.

The Royal commission into violence, abuse, neglect and exploitation of people with disability showed that a network of informal supports, capability building to make decisions and raise concerns, and being part of a community are key preventative factors to address the serious issue of violence, abuse, exploitation and neglect of people with disabilities. We know that having access to non-traditional support outside of "disability service land" is needed to end segregation, to enable people with disabilities to have a good and safe life in the community.?

Simon Duffy 's concept of “citizenship” highlights the risks of trapping people with disabilities in traditional disability services and the benefits of social inclusion and choice and control. In their recent report on the NDIS, Duffy and Brown recommend NDIS participants having full control over how our allocated funding is spent and warn against bureaucratic barriers that limit participant choice and control and social inclusion.

Check out my podcast with the authors of the report below:

What does the disability community want?

The NDIS Review recommendation to require us to use registered or enrolled providers is not supported by NDIS participants and families. In a recent survey by Every Australian Counts with over 1300 responses, the changes to provider registration was found to be the recommendation with the least amount of community support. 68% of NDIS participants surveyed disagreed or strongly disagreed with the NDIS Review proposal while only 13% of participants agreed or strongly agreed. Family members and nominees were also opposed to the NDIS Review proposal. 58% of family members and nominees surveyed disagreed or strongly disagreed with the NDIS review proposal while only 22% of this group agreed or strongly agreed. The results for providers were very different, only 36% of support providers disagreed or strongly disagreed while 44% of providers agreed or strongly agreed. Overall, the survey showed only 23% supported the NDIS Review recommendations on provider registration. 57% did not.

The survey results are backed up by the feedback I heard from hundreds of people who attended the various forums that I hosted in my role as Independent Chair of Every Australian Counts and as a board member of the Self Manager Hub. My recent podcast with leading disability advocates and academics also highlighted concerns with management provider registration. You can check that out below:

The lack of support amongst the people that the NDIS is meant to serve, needs to be understood and taken seriously by the government and by the NDIS Provider and Worker Registration taskforce. These results require decision-makers to pay attention to what people with disabilities and our families are saying and think deeply about why they want to implement a change that is so unpopular in our community.?

Recognise the vested interests at play

This review was supposed to be about people with disabilities and our needs. It was supposed to improve the participant experience. So it is fair to ask how we ended up with? recommendations so opposed to what participants want and need from the NDIS.

An examination of submissions by registered providers and peak provider bodies reveal that registered providers used their financial resources to lobby for changes so they don't have to compete with unregistered providers, who they describe as having an unfair advantage.

The argument put forward by registered providers is that they want a "level playing field". They say it is unfair that they have extra costs associated with registration.?

Of course there are costs associated with registration. It is a business decision that providers make, often when they are large enough to afford the costs and work involved. Registration provides access to the entire population of NDIS participants and is a point of difference for marketing their services to people seeking additional oversight.?

So essentially, providers get to choose what side of the "uneven playing field" they play on and if they choose the registered side, they do so knowing the cost and benefits involved.

What the NDIS Review failed to recognise is that there are very good reasons for an uneven playing field.?

The differences in the "playing field" need to reflect the different needs and preferences of participants. Not all participants are the same and we don't need the same level of safeguarding and oversight. Some of us need the peace of mind of knowing that our providers have undergone an audit and have all the fancy "quality assurance systems" that you need to be registered. At the same time, some of us feel confident that we can work out what quality support looks like and we want to be free to choose unregistered providers. So we apply to self-manage or plan manage our NDIS funding and undergo a risk assessment to determine if we have the capability to manage the additional risks and responsibilities.

By forcing participants to use registered providers, the NDIS Review has chosen to take the side of registered providers. It is a demonstration of how powerful businesses can use their financial capital to advance their vested interests and influence decision-makers.

There will be severe adverse consequences if we are forced to use registered providers

The NDIS Review fails to consider the adverse consequences of forcing us to use registered providers. These adverse consequences include:

• Workforce shortages will be severe as unregistered providers exit the workforce and at the same time it becomes harder for new people to enter the workforce.?
• Participants relying on unregistered providers, especially in regional and remote areas will be left without support.
• Individualised arrangements that enable individuals to develop innovative and more cost-effective solutions for our specific needs will be in jeapordy if specific exemptions aren't put in place. For example, microboards and direct employment.?
• Reduction in new, cost-effective and innovative supports – Small unregistered providers are able to work in innovative, flexible and cost effective ways for participants.
• Increased segregation as participants can no longer access services in the open market and are forced into more costly segregated disability service models, further segregating us from our local communities.
• The cost of support will increase as a result of reduced competition and workforce. Participants will no longer be able to shop around and find the best value and most suitable? supports and consumables on the open market. At the same time, registered providers in the closed market will increase their prices.

Recommendations

We need to protect the key principles of choice and control in the NDIS.

A graduated and risk proportionate framework proposed by the taskforce must uphold our fundamental human right to decide who supports us, while improving the safety of NDIS participants and the sustainability of the scheme.

We must preserve? our right to self-determination by:

• Maintain the option to directly employ/engage people that we choose without limitations or restrictions. There are a range of ways that people currently do this, including, direct employment, directly engaging an independent worker, or by establishing a microboard. The term "directly" is really important here. It means that the participant has a direct relationship with our support people, without a 3rd party dictating terms.
• Recognise that the type of support that you use does not determine risk. Therefore, do not use "support type" as the basis of a graduated risk proportionate framework. Instead, we need to uphold our right to choose our supports, of all types.
• Enable informed exemptions. If the decision is made to force NDIS participants to only use providers and workers who are registered or enrolled (which is not my preferred approach) we must enable people to access an exemption from this requirement. Exemptions should be available to adults of legal capacity who are engaging unregistered providers or workers for themselves or their family membersand have passed an assessment process that demonstrates that they can manage the risks involved and understand their rights and responsibilities. The denial of an exemption should be subject to an appeals process.
• Improve access to capacity building to ensure that people with disabilities and our nominees understand our responsibilities and the risks associated with self-management and directly engaging support people. We need more focus on capacity building and enabling people to have the necessary support in place to self-direct our supports successfully. This might include HR advice, peer support and help with accounting and administration, managing payments and record keeping.
• Put in place a suitable risk assessment framework that can effectively determine whether the person is capable of safely and successfully self-managing with the necessary support in place. This framework should be supportive rather than punitive and include an independent appeals process.

Individualised quality and safety plans should be developed with all NDIS participants to build an ecosystem of quality and safeguarding supports around the person.

This ecosystem should include:?

• Capacity building to self-manage, including support to understand risk, rights and responsibilities and make decisions
• Support to develop and maintain circles of support of unpaid friends and family who are a part of the person’s life and ensure that our needs and preferences are recognised and that we are safe and well supported?
• Support to develop and maintain a documented and shared understanding of the characteristics, knowledge, skills, experience and qualifications required by the participant of support providers
• Access to multiple providers and support workers, so that the participant does not become captive to one provider
• Community visitor programs to regularly visit group homes?
• Formal and regular contact with a planner, support coordinator or navigator
• Access to peer support to self-manage
• Access to individual advocacy
• Accessible and affordable worker screening
• An easily accessible banned provider database
• A positive duty owed by all providers to provide quality support, free of abuse, neglect and exploitation
• Compulsory provider registration and accreditation for providers of shared support
• Subsidised provider registration and accreditation
• Mandatory separation of housing and support
• Greater access to training, including participant-led training videos and resources, accredited competency-based training and the development of transferable micro-credentials
• The adoption of a market capacity building and embedded stewardship approach, where providers are assisted in the community to innovate and provide effective and high quality support.
• Increased investment to support people with disabilities to understand our rights under Australian Consumer Law and to support us to raise concerns and make complaints.

Will the Taskforce uphold our human rights and our hard-won freedoms?

For decades, the disability rights movement fought for true choice and control over our services and lives - to break free from institutional models that failed and abused us. Self-management and plan management through the NDIS finally made self-direction a reality.

Yet the NDIS Review wants to take away our right to choose our providers based on the flawed premise that we are incapable of making choices about our own supports. It prioritised the financial interests of providers over our basic human rights as people with disabilities.

The NDIS Provider and Worker Registration Taskforce now have the power to rescue self-management and participant choice from the jaws of the regressive NDIS Review recommendations.

Under the impressive leadership of Natalie Wade , the Taskforce has been listening to our community and is a beacon of hope for the thousands of us - participants and families - who feel our voices have gone unheard. We call on them to uphold the foundational vision of the NDIS as a person-centered system that empowers us to live as equal citizens, not perpetual clients of a closed service model.

By developing a truly individualised, rights-based quality framework as I recommend, the taskforce can set us on a positive path. One where each of our unique circumstances and preferences shape the proportionate safeguards around us within a broader individualised "ecosystem" of informal and formal supports.

The opportunity to protect self-management and self-direction is at hand. The question is whether the taskforce will seize it on our behalf. Hundreds of thousands of us are looking to the taskforce as our only hope to steer the NDIS back towards its original path of empowerment, inclusion and dignity.

Will they uphold our human rights and hard-won freedoms to decide who comes into our homes and who touches our bodies? The answer will determine whether decades of activism achieved only momentary progress, or realised the authentic societal shift towards true self-determination for people with disabilities.