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Sunday, June 20, 2021

I am not a number: Do NDIS reforms put people into boxes?

Opponents of the National Disability Insurance Scheme (NDIS) reforms believe that independent assessments are simplistic, and overlook an individual’s needs.

“No two people with disability are the same,” said Dougie Herd, chair of the ACT Disability Reference Group.

“The new proposal seeks to take 500,000 people and divide them up into … personas or types or disability boxes to feed a score into one of 400 boxes. That then gives a plan to somebody without any real reference to what my individual needs are, or what somebody else’s individual needs are.

“That doesn’t make sense. It takes us back to the old system, in which … the funder says: Here’s what we provide, we’re going to fit you into whatever we offer, rather than the other way around, which is to say to the people with disabilities themselves: How do you live your lives? What are the consequences of your disability? And therefore, how can we make sure that we arrange for you the funding for the support that you need to live your life.”

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The NDIS independent assessments are made in limited time, said Nicolas Lawler, CEO of Advocacy for Inclusion, so may not be accurate or complete. The NDIA states that the assessors’ observation session must last at least 20 minutes, and that observation, assessment and writing the report takes 2½ to 3 hours on average.

“The notion that an independent assessor will have the ability to effectively comprehend and exhaustively capture the diverse experiences and full impact of various disabilities in under four hours is deeply problematic,” Mr Lawler said.

Bec Cody, CEO of the Mental Health Community Coalition ACT, agreed. “They’re getting a snapshot of a person; they’re not getting to know the person; they’re not looking at what the supports are that that person needs for an ongoing life.”

For instance, someone with disability might overestimate their abilities, or confuse the assessor. One NDIS client told the assessor they were studying art, meaning at a community art group; the assessor thought this meant a higher education course, which would have affected planning decisions. An intellectually impaired person or someone with trauma or social anxiety might answer questions in the affirmative (whether accurate or not), repeat words, and provide rehearsed or rote answers, Mr Lawler said.

Unnecessarily stressful

Mandatory independent assessments were neither trauma-informed, nor culturally safe, and would disadvantage people with psychosocial disability or mental illness, multiple disabilities, or CALD, Indigenous, or LGBTIQA+ people, ADACAS CEO Wendy Prowse said.

“In fact, one could imagine that if anyone in our society was mandatorily told they had to be tested to gain access to reasonable and necessary supports to live a good life, they too would find this stressful and undignified.”

That stress and anxiety could worsen symptoms, Ms Cody argued. Independent assessments could retraumatise people, damage a client’s recovery, and cause relapse. Mr Lawler agreed: “People with disability will be subjected constantly to intrusive scrutiny and continually forced to crawl through hoops to ‘prove’ their need.”

ACT Minister for Disability, Emma Davidson noted that a similar scheme in the UK increased suicides by 5%.

Inappropriate tools

Using clinical assessment tools to generate a client’s support package, rather than developing it with the person with disability, was not appropriate. The tools were not designed to identify a person with disability’s particular needs, Mr Herd said.

They had not been tested to determine appropriate funding support for individuals, and there was no evidence to provide confidence that they would, Mr Lawler said.

Because of this, people with disabilities might not receive the treatment they need.

Ms Prowse was concerned people with disabilities might not receive sufficient care to cover their day-to-day needs from taking a shower to study or work. Costs for states and territories might increase if the NDIS did not provide supports people need, she predicted.

Dougie Herd feared that people would be excluded from the NDIS because they were not disabled enough. As they get older, they may be moved into the aged care sector. Their plan could be reduced over time, even though they did not have all the supports they need.

“As a consequence, there will be fewer opportunities for people to live genuinely meaningful lives supported by a scheme that is responsive to their individual needs, and that will begin to look like how things used to be,” Mr Herd said.

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