Navigating NDIS an exhausting and disempowering process, people with disabilities say

Authored by abc.net.au and submitted by snowyjoey23
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Lawyer Tom Monks applied for NDIS funding a year ago and said while acceptance was straightforward, getting funding for the things he needs has been a struggle.

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The 46-year-old lost both his legs in an accident when he was two years old.

During his childhood in Albany he was cared for by the hospital system and said the treatment was great, but as an adult he has received far less support and has mostly self-funded his care.

"For most of last year, due to COVID, I wasn't able to spend my money for therapies," Mr Monks told ABC Radio Perth's Nadia Mitsopoulos at a specially-convened forum to discuss the NDIS.

"At this year's review they used that against me, saying 'you didn't spend the money so we will take some away from you'."

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Support to stay in the workforce

A wheelchair user, Mr Monks relies on accessible taxis for transport and said he used to get a $70-a-week mobility allowance to help meet the cost.

"They took that away from me, saying that my wife can take up the slack," he said.

"They also took away what is a reasonable amount to fix my wheelchair."

Requests for funding for physiotherapy and pain management were also knocked back.

He submitted an application for a review, but said the entire process had left him feeling angry and disempowered.

"It has taken me three months to get the reports to substantiate that I have no legs. It has taken me an exhaustive amount of time."

He said the support he was asking for would help him to keep working full-time, support his family and contribute to society, and if he could not work he would be reliant on the JobSeeker allowance.

"I'm not eligible for the disability support pension, I'm not disabled enough," he said.

"I got questioned if my amputation was permanent by Centrelink staff at one stage."

'I avoided the NDIS for as long as possible'

Children's book and science illustrator Sarah Davies said the stories she heard about the difficulties of accessing the NDIS meant she put it off for as long as possible.

"I have got Ehlers-Danlos syndrome, which affects every single part of my body that has collagen in it," she said.

"My joints don't work properly, I get a lot of pain. It has an impact on every aspect of my life."

Sarah Davies says navigating the NDIS has been an exhauting process. ( ABC Radio Perth: Emma Wynne

While she was accepted for NDIS without much difficulty, her initial meeting in February with an National Disability Insurance Agency (NDIA) local area coordinator (LAC) to discuss her plan went badly.

"I found the building wasn't disability accessible and when I brought that up with the LAC she was angry with me," Ms Davies said.

"That kind of set the tone for the entire meeting. She spoke over me and she was not at all respectful.

"It became clear that she didn't want to be there, she complained about her job, she had come to work sick and wasn't wearing a mask."

When Ms Davies told the LAC she was in pain during the meeting, the coordinator suggested she go and lie down on the floor of the toilets.

While Ms Davies has since received an official apology from the NDIA over that meeting she was concerned about how the agency was run.

"I realised that many of the systemic problems in the NDIS are because people are employed to make decisions who are not qualified to make those decisions," she said.

"They don't understand reports and they can't understand our conditions."

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She was concerned a government plan to introduce independent assessments would make it even harder.

Proposed independent assessments will involve an allied health professional, unknown to the person with disability, meeting with them for one to four hours to assess the level of support they need.

The outcome will determine if they are eligible for an NDIS funding plan.

"The idea of having to go through an independent assessment with a person who has no understanding of my particular disabilities is terrifying," she said.

Ms Davies is now awaiting the result of her review.

"I'm not ready to give up on my goals yet, that's why I'm still fighting. I just didn't realise it would be such a fight," she said.

Fighting for the promise of original scheme

Greens Senator Jordon Steele-John, who campaigned for a royal commission into disability care, said independent assessments would not address any of the current issues with the NDIS.

"The problems are not enough staff, the staff they do have often are not trained adequately, the ICT systems don't support the complexity of our lives to be recorded in the system, and there are not enough disabled people in senior management levels of the agency," Senator Steele-John said.

"All of these factors are coming together to create a system which is a source of fear for people when we established it to be a source of hope."

Greens Senator Jordon Steele-John says problems with the NDIS will not be solved by independent assessments. ( ABC News: Nick Haggarty

Julie Waylen, the WA manager of National Disability Services, the peak body for non-government disability services, said the NDIS needed to return to the purpose it had when it was set up — to give people more control over their lives.

"It's got fantastic foundations but it has just lost its way with these current reforms," Ms Waylen said.

"One in five West Australians has a disability. We know that it can happen to anyone at any time."

Minister for the National Disability Insurance Scheme Linda Reynolds was invited to participate the in ABC Radio Perth NDIS forum but was unavailable.

crystal-rooster on May 27th, 2021 at 05:04 UTC »

It's not just Australia. In the US my sister was denied disability after her amputation because it was a "temporary" disability as well.

xrufus7x on May 27th, 2021 at 04:24 UTC »

"I got questioned if my amputation was permanent by Centrelink staff at one stage."

Sounds like some government employee autopiloting their way through a form.

WhatTheHolyFuckIs on May 27th, 2021 at 04:18 UTC »

Uh no Bob. It will slide into my room one night and reattach without warning