Is Australia ready to give people with disability real choice and control over services?

The National Disability Insurance Scheme (NDIS) has been described as a once-in-a-generation reform which will benefit all Australians. The A$22 billion scheme is due to roll out progressively across most of the country from July of next year. Nearly 20,000 people already have individual plans in place within trial sites.

Choice and control are at the heart of this scheme. People with disability have welcomed this in a context where services have traditionally been underfunded with little flexibility. The existing one-size-fits-all approach was built more around the needs of organisations and the system than people with disability.

But what might happen if NDIS users want to purchase very different sorts of services? Would politicians have the courage to stand up to backlash caused if people with disability used their care money to pay for overseas holidays, sex workers, internet dating subscriptions or tickets to sporting events?

With the introduction of the NDIS, Australia is following a trend in disability services that we see throughout much of Western Europe and North America. Governments have moved away from the block funding of disability services and towards some variant of individualised funding.

Evidence suggests that when individuals have greater choice and control over their services, they’re more likely to have better outcomes and to make more efficient and effective use of the funding.

An important part of many of our lives are the relationships that we have, which variously provide intimacy, friendship, companionship and community.

Yet we know that the sexual and reproductive rights of people with disabilities have often been denied or ignored within traditional models of services. Many people with disabilities report feeling socially isolated. We might then expect that people with disabilities may use individual budgets to access intimacy and relationships that the rest of us may take for granted.

Choice and control are important concepts in the legislation underpinning the NDIS. People with disabilities can set their own goals, plan their care and coordinate their support services.

The NDIS website hosts a number of case studies of those who have already benefited from the scheme. Many involve purchasing assistive technologies, equipment, transportation and training courses. Often the aim is employment and better integration within communities.

These case studies are not entirely radical in their approach to disability services and largely reflect what good person-centred planning looks like. This is not to diminish the contribution the NDIS makes; after all, just a few years ago Australia came bottom in an OECD study of quality of life for people with disability. But it may take some time until we start to see choice and control fully emerge. When we do, there may be the potential for some very different sorts of packages of care to emerge.

The United Kingdom introduced direct payments in 1996, making it possible for people with disability to control their care money. Since then, a range of different funding arrangements has developed such as managed personal budgets (where the money remains with the local authority) and individual service funds, where money can be held by a third party, rather than the individual.

Levels of take-up of personal budgets now stand at 65% of eligible people. One-quarter of these take the money as a direct payment.

Where people take a direct payment, they must spend it in pursuit of a defined set of outcomes. But they are free to determine how best these might be met.

A few years ago a freedom-of-information (FOI) survey was sent to funders of direct payments by two groups that campaign for the sexual rights of people with disabilities. They requested information about what these monies have been spent on.

The group released the results and for weeks the media was awash with tales of a young man with learning disabilities using “taxpayers’ money” to fly to Amsterdam and have sex with a prostitute. Others reportedly visited lapdancing clubs, went on “exotic overseas holidays”, paid for subscriptions to internet dating sites and bought tickets to soccer matches.

These examples demonstrate both highly innovative and different ways of achieving outcomes and the tensions that arise when citizens (and not professionals) make judgements about what sorts of spending will improve their well-being. Some purchases, such as walk-in baths, have a more obvious link to care. But a TV sports package, a laptop or a massage may be less so and have exposed individuals and government agencies to critical media scrutiny.

On the whole, English authorities have demonstrated strong political leadership supporting the decisions individuals make. In some cases, they have even asked care workers to phone sex workers to check what they were charging for services to guard against people with disabilities being exploited. This is no mean feat in a context of significant fiscal constraint in public services and increasing numbers of “working poor” within the population.

This raises the question of whether there is a similar appetite in Australian politics to defend the rights of people with disabilities to spend care monies on quite different things.

The experience of employment services over the past few decades would suggest not. The theory of Job Network and Job Services Australia (JSA) was that they would be innovative, cost-effective and responsive to consumers.

The reality has been that providers are incentivised to offer standardised models of services. They focus on short-term employment outcomes rather than overcoming barriers to employment and ensuring that employment is sustained. These services have remained heavily regulated and controlled by government; they have not focused on outcomes for clients as originally promised.

Only time will tell just what will happen with the NDIS and whether it will offer true choice and control to people with disabilities. I hope there is the political courage to deliver on these promises and support people with disabilities to direct their own care, and not another version of the employment services story.

Helen Dickinson does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond the academic appointment above.