NDIA Accountability Project

Difficulty accessing essential supports and experiencing dismissive treatment within the NDIS

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NDIS CAPACITY

NDIS has no capacity to provide services, even in the biggest city in Australia. From housing, to support and allied health NDIS has been woeful.

Background

  • I was living in the Illawarra for 6 years, and for the last 6 months there I lived in an Improved Liveability apartment in Wollongong. I moved back to Sydney in December 2021 to be closer to my family
  • The main reason I am now moving back to Wollongong is that I cannot achieve any of the goals in my NDIS Plan in Sydney. I must forgo proximity to my family to live a decent life

Housing

  • I require a Fully Accessible (FA) home. NDIS took 9 months to figure out I was wheelchair-bound (despite evidence), but finally approved it. My current apartment was designated FA under previous NDIS SDA standards, but does not meet current NDIS SDA standards. I believed, and all the advice I’ve sought indicated that the SDA Housing provider would bring the apartment, as far as possible, up to current SDA standards. Apparently, that’s not the case. I specifically require air conditioning that is functional, with a duct in the bedroom, as specified in the current NDIS SDA standards. This doesn’t exist in my current home. NDIS recently advised of the process to achieve this alteration. That process is complex and includes onerous conditions. Given, the pace of change NDIS has demonstrated, I don’t think the air conditioning will be altered before this coming summer. I can’t live in this apartment through another summer, with the current air con. I must move before then
  • There is only one complex, comprising apartments, available before summer comes in Wollongong. As I must move before summer, this is the only choice I have
  • Apparently, NDIS decided that I should live in a villa. I didn’t ask for this, nor was it ever explained to me what this NDIS decision meant. I expressed a preference, when I first applied for SDA, to live on the ground floor with a garden. It was never explained that I may have to pay $14K pa approx., to live in an ‘apartment’, if I am unsuccessful in a ’Change of Circumstance” application. The only FA properties available in Wollongong and Sydney are apartments. Building villas is not financially viable, and NDIS is set up as a market-based system. NDIS has previously approved me to live in and paid rent on two apartments. I don’t understand why this issue was not raised and rectified before. I’ve never “proved” I should live in a villa – no allied health reports mentioned this. I risk paying approx. $14K pa to move back to Wollongong, if NDIS don’t approve my ’Change of Circumstance” application. I’m on the disability pension. My circumstances have not changed – I simply need a fully accessible home, which I applied for in February 2021

Support workers

  • It has proven difficult to find reliable, experienced, trained support workers in Sydney, despite the best efforts of my support coordinator. In just over 6 months, I have worked with 3 different support worker companies, and with over 25 different support workers. I’ve lost count. It’s exhausting to have so many new workers. Staff turn-over seems to be a serious issue in Sydney
  • Many staff are not trained in manual handling or have any training or experience working with people with a disability. I have felt quite unsafe with some of them – almost being thrown out of my chair, or bracing myself against a car so as not to career into it
  • Sometimes, despite being booked, they simply don’t show. When I asked one company for only trained support workers, I had to wait a week until they could fill my shifts
  • There is a support worker company on-site where I live in Sydney, offering a concierge support arrangement. I’ve spent 6 months asking them for a Service Agreement, detailing what would be provided for the $74K taxpayers will spend on this. No luck. I gave up, and never signed. This means I don’t have on-site support, except afterhours
  • I know a support worker company I trust in Wollongong, who has low staff turnover. They currently have capacity to provide consistent, reliable, trained and experienced support workers
  • The support company in the complex I will move into in Wollongong has provided me with details, a service agreement and quote for their concierge model, even before I move in. The exact opposite of the support company in my current apartment complex

Allied Health and Medical Support

  • Hydrotherapy is essential for me. Pools in Sydney are rarely accessible. The two closest to me aren’t. I must travel to the accessible Ashfield outdoor pool. In winter, or when it’s aining (most of this year), I must travel to further to Marrickville, where there is on-street parking, often totally full. More than once I’ve travelled to Marrickville, then tried and failed to find a park, and simply gone home again. Not only difficult for me, but a waste of axpayer money. In Sydney, due to travel time, and time to find a park, I require more support worker hours. I therefore have less support worker hours to do other things, like attending health/allied health appointments, or any other activities. All Wollongong pools are accessible, close to my new home and parking is plentiful
  • Finding a physiotherapist who provides hydrotherapy has proven difficult, despite the best efforts of my support coordinator. I also need a specialist gym, to increase my mobility. While my support coordinator has now found one, the wait time is two months, and they require me to pay for 1.5 hours of assessment before I even use the gym. In Wollongong, I will again work with a physio I previously worked with and trust, at the pool and at her organisation’s specialist gym. There is no wait time for her services. She is part of the same organisation as the OT organisation mentioned below
  • Finding an OT has proven difficult, despite the best efforts of my support coordinator. In just over 6 months, I have worked with three different OTs, waiting well over a month each time, to simply see them. They have only produced reports required by NDIS. They have not practically assisted me to better live my life. I’m still waiting for a comfortable self-propelled chair to shower in, which I asked for from an OT in December 2021. I applied for an FA home in February 2021, but I still can’t shower in my own home. I have to go to the pool to wash. I still haven’t got a hired or purchased power wheelchair. To access the community, I must rely on support workers to wheel me around in manual chairs. In Wollongong, over many years, I only worked with 3 OTs from one company. I am re-engaging with them
  • Accessing medical support for my condition has been very difficult. I waited 2 months for one organisation to return my very regular voicemails. When they finally called, they did not have capacity until December 2022
  • I’ve been seeing a psychologist, sourced by my support coordinator. I wanted to talk with her about making the big decision to move back to Wollongong. When I tried to make an

appointment, she said she was leaving the position, and her replacement won’t be available for 2 months. This clinched my decision to return to Wollongong

The combination of all of the above has been very difficult to cope with. It is not sustainable on a daily level, and certainly does not facilitate me meeting my NDIS goals.

NDIS CULTURE

Attitude of NDIS staff, support coordinators, managers of support agencies

Most treat me as if I am stupid and do not understand NDIS, including SDA. All are patronising at best, gaslighting me at worst. English is my first language. I have a Social Work degree. My career included 20 years as a senior policy advisor in a range of NSW Government agencies. My disabilities do not impact my ability to speak, listen, write, nor comprehend. NDIA Planners consistently call or email my support coordinator, without involving me. They make decisions about my life, and cut me out. This is totally disempowering, goes against the NDIS charter. I defy anyone to actually understand the many and varied NDIS SDA processes. I sought advice from my current and former support coordinator about an aspect of SDA. Both unequivocally told me the same thing. Both were wrong. I based my decision to live somewhere based on wrong advice. I don’t blame them. Both are very experienced. I blame NDIS for being as transparent as reinforced concrete, especially SDA.

The above only describes the past 12 months. The combined effect of having none of the support I need, and being treated like an idiot, year upon year upon year has broken me.