The National Disability Insurance Scheme (NDIS) was designed to empower and support people with disability. But ten years into the scheme, many participants are finding their encounters with the NDIS dehumanizing and burdensome.

And, according to the scheme’s architect Professor Bruce Bonyhady, service gaps are now pushing people to present “the worst version of themselves or their children” to secure the supports they need.

With the NDIS independent review well underway, here’s why the scheme needs to reclaim its strengths-based roots and what’s currently getting in the way.

Evaluating impairment

The NDIS is what’s called a “personalisation scheme” that allows people with disability to control their government-funded services and resources.

To become an NDIS participant, applicants must provide evidence of a permanent disability that significantly impacts their life or requires early intervention. Evaluating impairment is important for accurate support planning.

But assessments that focus on a person’s deficits can put them in a vulnerable and confronting position. Re-assessments may even impact mental health.

Once accepted into the scheme, NDIS participants might expect this experience is behind them—but personal accounts included in last week’s NDIS independent review interim report suggest this is not the case. As one family member told the review:

“I love the NDIS. It has been a life saver for my family but not without stress, anxiety […] and seeing my family at breaking point. Every year we go through the same mundane crap and have to fight the fight, not knowing what the outcome will be.”

The need for strengths-based planning

Given the scheme’s design means NDIS participants have a verified permanent disability, they should not have to justify that they still need essential services. However, scheme participants report facing interrogation about whether they are “disabled enough” to warrant funded support. They are regularly advised by providers and advocates to imagine their “worst day” when detailing the support they might need.

According to participants, this frequently occurs during the yearly evaluation of plans, which has been described by NDIS Minister Bill Shorten as a “traumatic process.” The proposed revisions to these assessments aim to reduce their frequency in order to alleviate the associated distress.

The World Health Organization describes disability as an interaction between health conditions, environments, and personal factors. Contrary to an insurance mindset, disability can’t be medically “fixed” while discrimination and access barriers persist.

Strengths-based practice helps us to account for this complexity and is a common approach in psychology, mental health recovery and education. Strengths-based planning defines capability in relation to someone’s self-identified goals and in the context of support.

While a “worst day” description could indicate that NDIS participant “Maggie” is unable to shower independently or maintain personal hygiene, a strengths-based assessment would highlight the following:

“With the aid of a shower chair and an adapted loofah, Maggie can work towards her goal of bathing safely and independently, while still acknowledging that occasional assistance may be required.”

The voice of NDIS planners is rarely heard in research, so it’s hard to know why the strengths-based approach isn’t taken more often. However, suggested reasons include a lack of disability expertise and unclear eligibility criteria. Planners may also be safeguarding against potential sympathy bias in providers’ recommendations, although there is little evidence to show this bias exists in practice.

Regardless, the interim review calls for a shift in responsibility away from people with disability, onto the National Disability Insurance Agency staff to show:

“[…] why their decisions of what is reasonable and necessary disagrees with that of a qualified professional.”

And research suggests NDIS paperwork has a notable impact on the information NDIS participants can share about themselves, and how their capabilities and needs are considered in planning. Revised assessment protocols that celebrate strengths and account for social barriers could scaffold a more collaborative and empowering approach to decision-making across the scheme.

An oasis in the desert

The NDIS was intended to benefit all Australians with disability by investing in mainstream services and community inclusion. But those outside the scheme have been left behind, forced to self-fund essential services or go without.

Consequently, NDIS applicants feel pressured to report about their “worst days” and not showcase their strengths, in order to boost their chances of being accepted and retained in the scheme. These presentations are a symptom of competition in an under-resourced system.

The NDIS holds significance for a large portion of families, given that one in six Australians has a disability. For the NDIS to work, our society needs to understand disability is more than just impairments.

Supporting a functional NDIS will allow people with disability to contribute to their families, jobs and communities. Making the world more accessible will enable these goals and is the real solution to reducing the cost of the scheme.

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