Fair Go? spokesman: Gavin Ritchie, 45, of Sydney, receives the disability support through the NDIS because he has a chronic illness.

Wants to know: why he has been able to access only very minimal supports through his NDIS plan, and why the support workers who administer his funds have not seemed very helpful getting him access to the supports he wants.

Sydney Policy Lab says: we found that despite consultation with disability advocates and people with disability when the NDIS was being designed, it is not wholly delivering on its promise of “choice and control” for people with disability. Choice and control is far from the universal experience of the NDIS’s implementation and evaluation. Below we set out how Australia reached this point and what it means for those in Gavin’s position.

What is the NDIS?

The NDIS was established to enable people with disability decide and gain access to the supports they need. It gives eligible people access to support providers through a managed market. It commenced on 1 July 2016 and full operations are expected in 2019-20.

It replaced a fragmented system that was funded federally and delivered by state governments. Under that system, people with disability experienced inadequate services, discrimination, disempowerment and abuse. The NDIS was to be part of the solution and people with disability and advocacy organisations were heavily involved in the early design consultations.

A central purpose of the NDIS was to give people more choice and control, something people with disability and their advocacy organisations have long demanded. It was widely perceived internationally to be a major public policy reform and a potential world leader in person-centred public policy.

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How does the NDIS work?

Many people with disability are ineligible for the NDIS, including people with temporary or episodic conditions and people under seven or over 65.

Those who are eligible must decide their short-, medium- and long-term goals before attending a planning meeting. Gavin, for instance, wants to train to become a Pilates instructor. A support plan, including funding, is drawn up to meet these goals, as well as everyday and occasional needs.

Support plans are reviewed annually. Participants may request an internal review if they are unsatisfied with their plan. These reviews have, however, been subject to lengthy delays. A draft review process was trialled but ultimately left out of the final NDIS.

Once they have received their plan, NDIS participants can use their funding to procure “necessary and reasonable” supports. This can be a complicated task. Navigating the system alone requires a relatively high level of English proficiency, digital literacy and cultural familiarity. And there are approximately 19,000 registered providers nationally, a mix of non-profit and for-profit organisations.

If a participant elects to self-manage their plan, they must handle provider contracting, budgeting, bookkeeping, participation in payment auditing, and similar activities. 14% of NDIS participants self-manage and 11% partly self-manage (combining it with plan management).

Gavin is in the 24% who use a plan manager to handle the finances while retaining choice over providers. The remaining 52% are agency managed, meaning the National Disability Insurance Agency provides them with a more limited range of providers while taking care of the finances. Furthermore, 40% of participants (across these categories) use a support coordinator to help choose and manage providers.

How is the NDIS performing on “choice and control”?

As Gavin well knows, the NDIS has not provided the desired choice and control to everybody.

A recent major evaluation found that while most participants have noted improved choice and control in one way or another, 13% felt they had less control over what supports they received and 48% felt it had remained about the same. Furthermore, 81% wanted more choice and control. Dissatisfaction was highest among people with mental/psychosocial disability.

There are a number of impediments to choice and control. While participants might be able to choose from a wider range of providers, they can struggle to find enough information about them and many advocacy organisations that exist to help people with disabilities make these decisions report difficulty doing so. The complexity of the NDIS means that many participants need help to manage their finances and/or choose providers. However, some participants report not having had their choices fully respected by staff.

Other issues are more direct outcomes of the NDIS’s market-like system. Providers must contain costs to compete in the market for support services. This can affect the types and quality of supports available. Some participants have been asked to give unrealistic notice periods or schedules for support, and others have been presented with restrictive contracts.

As well, pre-existing niche, not-for-profit providers are in a precarious position, particularly as more for-profit organisations enter the market. Services for Indigenous people and culturally and linguistically diverse people have been particularly limited, heightening language and cultural barriers to supports. Many remote areas are badly under-serviced, further failing many Indigenous people with disability.

How could choice and control be improved?

The NDIS was the result of the efforts of people with disability and their advocates who fought for more autonomy over their supports and their lives. Choice and control is an important objective, and individualised funding is a key ingredient. However, the way in which the NDIS largely functions by providing a range of pre-packaged options to people independent of their personal circumstances can limit choice and control.

Although NDIS is a major policy achievement, it is crucial that consultation and engagement with people with disability and their advocacy organisations be renewed. Disabled People’s Organisations Australia, for instance, is calling for a renewed “co-design ethic”. This would entail giving people with disability the chance to participate and mechanisms for shared decision-making in every stage of design, implementation and evaluation of the NDIS and the services available within it.

Reporting in this series is supported by VivCourt through the Guardian Civic Journalism Trust