‘On my worst day …’ How the NDIS fosters a deficit mindset and why that should change

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

This article was first published on The Conversation, and was written by Kate Anderson, Vice Chancellor's Senior Research Fellow, RMIT University, Darryl Sellwood, Scholarly Fellow, Disability and Community Inclusion, Flinders University, Flinders University

 

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If you have a legitimate problem then you will not have to worry....It's just the 1000's of people ripping of NDIS. First thing to fix is the exorbitant pricing by tradesmen & ladies when quoting a job for NDIS.
 
Have to say, I agree with DKH.
Although we are not on NDIS, the same arises with home aged care.
Some of the charges coming through on my hubby's aged care package can be eye watering. We dare not cut back on things because it will affect level of care. Better the devil you know.
I don't know about others who may be taking advantage of the system. Suffice to say, they are there.
 
One of the big expenses with the NDIS. Home visit by a therapist - not just the hourly charge but the other two charges that are billed.
Travel time and a charge for kilometers travelled. These two can double the cost of the home visit. Why are they not made to keep records and claim in on their tax and not NDIS.
 
The National Disability Insurance Scheme (NDIS) was designed to empower and support people with disability. But ten yearsinto the scheme, many participants are finding their encounters with the NDIS dehumanising 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:





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:


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:


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.

This article was first published on The Conversation, and was written by Kate Anderson, Vice Chancellor's Senior Research Fellow, RMIT University, Darryl Sellwood, Scholarly Fellow, Disability and Community Inclusion, Flinders University, Flinders University


imagine living with genetic adult onset vision & hearing loss on top of post encephalitis loss of smell & taste. Imagine having pre NDIA care support via Centrelink then accepted under NDIA for Plan 1-4 then some bureaucrat decided that as I married my carer I could no longer use them & also took away choice & control from self managed to plan managed . Imagine several appeals via their bureaucratic process including Admin Appeals tribunal (where an outsourced lawyer said they dont care about my evidence only a plan review which led to no change), 2 mediation meetings which led to loss of self management & the need to be Support Coordinated. Imagine that 2 skilled Supp coord's both agreed with my evidence (over 30 allied health & specialist reports) & they were also tabled as incompetant. Imagine being forced to have a level 3 supp Coord who also agreed with my evidence after a wastage of your tax money - $8000 for reports again (only to confirm my need & deterioration) & $6000 for the Supp Coord fees to review & write reports & too have a NDIA planner rather than Local Area Coord (but they do not read, comprehend, communicate & just make bureaucratic decisions). My level three Supp coord has just resigned & neither she nor I could find another as they all said that its a hopeless task (time, money, resources) when the need falls into a Thin market paridigm. Imagine several complaints to Bill Shortens office getting me no where but pre formatted hyperlinked responses. The issue - Thin markets. If there are only 2-3 deafblind in your state who have adult onset deafblindness & trying to find care support that is appropriate, reasonable & necessary & fit for purpose & credentialled which my carer & now wife is. She gave up her career & hence career income & Super to support me & is qualified with 5 degrees in the disability workplace, Auslan etc.... I dont need an expensive interpreter who lacks carer skills (although when out we use very close up slow auslan) & I dont need just home based care support (around the clock). So for $40,000 per year they have wasted over $100,000 of your tax dollars fighting rather than understanding what has been brought to their attention repeatedly & tabled at the Quality & safeguarding Commission in 2019 as well as reported by peak body Deafblind Aust as a systemic failure of the system. The Royal Commission raised the massive issue of Thin market aspects of professional specialised care support needed in Vol 6. Believe it or not NDIA told me to use my package to train 5 persons (gosh - dont they understand Auslan takes over 2 years to be credentialled). Talk about dehumanising, hopelessness esp when you see the wastage on some other disabilities & I cannot get my basic needs met under the scheme (no care support now for 2 years) & as my wife gave up her job 4 years ago we are over 4*$70,000 = $280,000 plus Super worse off financially yet if we divorced they would pay her again. The ABC dont seem interested as deafblind is not a sexy disability enabling ratings for the story. As I move to over 65 there is no motivation to move to My Aged care as the services are even worse. I could give stories of sheer stupidity of NDIA bureaucrats re understanding my needs or the skills of my guide dog (I won the last aspect after challenging them that my guide dog cant speak English or numbers, cannot navigate unfamiliar routes & does not have a built in GPS). Am I disillusioned YES. Do I think the NDIA Review will help NO. is the peak body for deafblind frustrated YES. I rest my case. In conclusion the Review failed to raise all staff sitting the Naplan test as they cannot read, cannot comprehend, cannot do basic maths & are not fit for purpose yet make decisions that impact peoples lives. I managed to type this on my assistive tech then cut past - time taken just under 1 hour & on top of all this they say loss of smell taste, vision & hearing is not seen as a complex disability.........
 
After reading the above posts, my blood pressure is approaching cerebral vascular accident levels. I don't need another stroke.

I'm ready to engage with not-for-profit community organisations who support persons with disabilities in the view of becoming a support person and an advocate for such persons when dealing with the NDIS and service providers. FREE OF CHARGE! That's how passionate I feel. Just f**k these scum, especially the providers.

I have dealt with several NDIS staff in my short time working for the NDIA. What is their background? A former carpenter, cake decorator and a f**king Burmese Cat breeder. Formal and recognised qualifications, plus experience in disabilities are non existent. What next? A Coles checkout chick walking into a local coordinator job?

Excuse the swearing but these people need quality help AND quick!
 

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