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Girl who uses wheelchair deemed to have no mobility concerns by NDIS independent assessment

·4 min read

A nine-year-old girl who sometimes uses a wheelchair was described as not having mobility concerns in a report prepared for the National Disability Insurance Scheme trial of independent assessments.

As debate continues about the controversial proposal, Sue Tape, whose nine-year-old daughter, Eliza, took part in an ongoing trial of the assessments in January, told Guardian Australia the family had agreed to be involved out of “curiosity” but they were unsatisfied with the process.

The changes were initially framed by the government as about making the NDIS fairer, but have since been recast as a “sustainability” reform, amid an intensifying debate about a claimed cost blowout, which is questioned by advocates.

 Related: ‘Costs are going up’: Linda Reynolds warns of hard discussions on NDIS funding 

The plan to have independent assessments carried out by government-contracted allied health professionals would replace the current system where people provide reports obtained from their treating specialists.

Tape said Eliza, who lives with physical and intellectual disabilities, had taken part in a trial assessment in January. The family then waited 16 weeks for a copy of the report.

“It said that she doesn’t have any mobility issues,” Tape said. “And this is a child with brittle bones and who uses a wheelchair. I’m not quite sure how they arrived at that conclusion.”

The five-page “participant interaction notes” included a question, “Does the participant have any concerns with mobility?” and the listed response is “no”.

The response was baffling to Tape given the previous question notes Eliza uses a manual wheelchair, while other reports generated from the assessment also referred to Eliza’s mobility issues.

Watch: How an Aussie family business empowered a workforce living with a disability

Tape said she was only aware of the inaccuracy because she had specifically requested to see the report. She was worried it could have affected her daughter’s funding if the assessment were not a trial.

“I would imagine if I’m asking for a new wheelchair for Eliza because she grows out of the current one, they’re going to look at the independent assessment, and it says she doesn’t have any mobility issues,” Tape said.

Tape said it was unclear whether the assessor had made a data error, or what the finding was drawn from.

A National Disability Insurance Agency spokesperson said the agency had apologised to Tape for the delay.

But the spokesperson insisted “a person’s mobility or functional capacity would not be determined through one question alone”.

“The use of wheelchairs and other mobility concerns are captured in the assessment in multiple places,” the spokesperson said.

“Independent assessments will also be subject to quality checks.”

It comes as a survey for Children and Young People with Disability Australia (Cyda) found overwhelming opposition to the independent assessments plan, dubbed “robo-planning” by critics.

A report for Cyda, prepared by academics from two universities, sought views from more than 200 families, finding significant positives but also some dissatisfaction with the scheme.

This included about 40% not being satisfied with their services and support, and more than two-thirds saying they have had trouble accessing suitable services and support in their area.

Young people with disabilities and their families were also asked about the government’s controversial plan to introduce independent assessments.

According to the Cyda report, of the three-quarters of respondents who were aware of the assessments proposal, 80% had a negative view, compared to 6% who viewed it positively.

“Of those with a negative view, many were worried that an assessment of this type done by a stranger would not give an accurate picture of abilities for a range of reasons such as lack of trust, complex needs, and masking behaviours,” the report said.

The NDIS minister, Linda Reynolds, has said she will use the outcome of the trial to inform possible changes to the policy, but that independent assessments would go ahead in some form.

 Related: I’m the NDIS. But please call me Denise | First Dog on the Moon 

Critics of the trial claim it is flawed in part because people are asked to give feedback without being informed what impact the assessment could be expected have on their funding package.

The national disability insurance scheme chief executive, Martin Hoffman, told a parliamentary inquiry this month nearly 3,000 people had taken part in the most recent assessments trial.

He said to date more than 70% of people had reported “a good-to-excellent experience overall”, while 85% were positive about the questions and activities undertaken during the assessment.

“Of course we’re seeking to improve it, that’s part of the reason we’re doing the pilot,” he said.

“But the dismissal of it, even the pilot so far, is not reasonable, I think, given the sort of data we are seeing.”

Positives identified by the Cyda report included many respondents describing the support they received as “life-changing”.

Mary Sayers, the Cyda chief executive, said the report showed that while the NDIS was “transformational” when it worked well, there were ongoing issues that would not be addressed by the independent assessments plan.

Watch: Delta Goodrem opens up about having to learn to talk again.

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