Improving consumer outcomes through examining carer choice in the NDIS


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The National Disability Insurance Scheme (NDIS, or the scheme) puts choice and control in the hands of Australians living with a disability.

This progressive departure from traditional welfare approaches promotes personalisation and flexibility by funding the goals and aspirations of NDIS participants.

With the help of a National Disability Insurance Agency representative, consumers themselves (or their nominated carers) are able to manage their own plans, and make choices for disability-related services, supports, therapies and interventions.

However, individuals present biases when choosing for others (Atanasov 2010; Polman 2012), including health care choices (Lockenhoff and Cartensen 2008).

So how do consumers and carers make choices regarding disability-related services? And, if these choices differ, how can we improve the NDIS to ensure the scheme optimises the welfare of consumers?

To investigate this and other important questions, the Institute for Choice, National Disability Services and Capital Markets CRC conducted a large-scale study to examine the choices of consumers and carers in the NDIS.

Our objective was to examine how the scheme can be improved to optimise outcomes for consumers.

We envision that understanding the choices of eligible NDIS participants allows for the improvement of plan-design consultations across Australia — in terms of quality and consistency.

Our data revealed thought-provoking findings regarding what consumers and carers pursue and the ways they go about addressing their goals.

On the pursuit of goals

NOTE:

  • Personal goals are in ‘inverted commas’.
  • Services, supports, interventions and therapies are italicised.

The NDIS is premised on a means-ends principle: individuals select means according to their pursued ends. In this sense, individuals are assumed to pursue personal goals through the available services, supports, therapies and interventions (see: The NDIS tension in boosting disability employment).

Our findings corroborate the existence of these means-ends associations.

However, contrary to the one-to-one (service-to-goal) associations presumed by scheme parameters (see scheme pricing, p. 8), our data reveals network-like patterns of associations amongst services and personal goals.

In Figure 1, we present the services most required by consumers, and the associations between the services covered by the NDIS and individuals’ personal goals. Our report findings corroborate the existence of these means-ends associations.

Figure 1: Means-ends associations between personal goals and support services required for current and potential NDIS consumers. Source: Fulfilling the life potential of Australians with a disability through customer-directed choices.

Consumers believed that their most required supports were associated with the goals ‘maintain or improve physical health’, ‘avoid gaining weight/losing weight’ and ‘avoid poor mental health’.

Also, supports towards getting and keeping a job was only instrumental to the goal ‘get a job and keep current employment’. Perhaps the popularity of these services would improve if consumers perceived more benefits related to this goal.

We present the results to the same exercise to the carers’ cohort in Figure 2.

As a whole, the carers group made significantly more associations between services and goals than the consumer group.

Like consumers, carers linked supports towards exercise and physical wellbeing to the goals ‘maintain or improve physical health’ and ‘avoid gaining weight/losing weight’.

Figure 2: Means-ends associations between personal goals and support services required for current and potential NDIS carers. Source: Fulfilling the life potential of Australians with a disability through customer-directed choices.

However, they additionally linked these supports to ‘having a good, happy or fulfilled life’, ‘being more independent and mobile’, ‘completing everyday tasks and activities’ and ‘avoiding poor mental health’.

Whereas consumers linked therapy to help physical, mental and social needs to the goal ‘avoid poor mental health’, carers associated this support to ‘be more independent and mobile and maintain or improve physical health.

Unlike consumers, carers associated supports towards fund management of disability support to ‘having a good, happy or fulfilled life.

Understanding priorities

In a qualitative stage of our study, we asked consumers and carers to indicate whether they required home- and work-related supports.

Our findings revealed that consumers were more likely to report work-related services (33.3% versus 19.4%), whilst for carers, the priority was on home-related supports (45.2% versus 16.7%).

Our large-scale data analysis show (in Figure 1) that only consumers associated supports towards getting and keeping a job to ‘get a job or keep current employment’.

For carers (in Figure 2), the home-related supports towards coordinating general aspects of life and disability are linked to a number of goals: ‘have a good, happy or fulfilled life’, ‘be more independent and mobile’, ‘complete everyday tasks and activities’, ‘maintain or improve physical health’ and ‘avoid poor mental health’.

Supports towards developing day-to-day skills, also related to home supports, were linked to ‘being more independent and mobile’, ‘having a good, happy or fulfilled life’, ‘completing everyday tasks and activities’ and ‘learning a new skill/trying something new’.

We hypothesise a number of reasons for these stark differences in associations.

First, as we pointed out in the introduction, a third-party perspective means consumers and carers use different criteria when associating services and goals.

Second, carers examine more severe disabilities — consumers who require someone to care for them are likely to be facing more severe limitations — which impacts the supports required.

Thirdly, carers have more expectations than consumers regarding the NDIS and what the scheme should help consumers achieve.

Fourthly, consumers underestimate the amount of support required to achieve different goals.

Finally, there is a chance that carers incorporate their own goals and aspirations to those of consumers when making choices in the disability sector.

But whose plan is it?

The impact of disabilities on the lives of carers is well documented.

However, the NDIS has been purposed to fund the goals and aspirations of consumers.

In neglecting to formalise the goals and aspirations of carers, there’s a risk the scheme is prone to systematic biases with regards to plan designs, individualised funding allocation and, subsequently, consumer welfare.

Rather than addressing the needs of carers through independent policy initiatives (e.g., Carer Allowance), we believe success in the NDIS requires an integrated policy outlook — one that examines and reconciles the choices of people with a disability, their carers and the broader community.

Otherwise, with the NDIS intended to support the needs of consumers, by neglecting to formalise the needs of carers, the scheme could be deviating from its very objective.

References

Atanasov, P.D. (2016). Risk Preferences in Choices for Self and Others: Meta-Analysis and Research Directions. http://dx.doi.org/10.2139/ssrn.1682569. Available at: SSRN.

Lockenhoff, C. E. and Cartensen, L. L. (2008) Decision strategies in health care choices for self and others: older but not younger adults make adjustments for the age of the decision target. Journal of gerontology: psychological sciences, v. 63B, n. 2, p. 106-109.

Polman, E. (2012) Effects of self-other decision making on regulatory focus and choice overload. Journal of personality and social psychology, v. 102, n. 5, p. 908-993.

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