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You can find the current article at its original source at https://www.theguardian.com/australia-news/2017/oct/21/things-cant-go-on-like-this-tears-and-tragedy-for-couple-let-down-by-ndis
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| Version 1 | Version 2 |
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| 'Things can't go on like this': tears and tragedy for couple let down by NDIS | 'Things can't go on like this': tears and tragedy for couple let down by NDIS |
| (about 1 month later) | |
| Denis Reid will never forget telling his wife of 48 years she had to leave. | Denis Reid will never forget telling his wife of 48 years she had to leave. |
| In the almost two decades since Annette’s multiple-sclerosis diagnosis, he’d done what he could with meagre funds to keep her at their home in Queanbeyan, a town straddling the New South Wales and Australian Capital Territory border. | In the almost two decades since Annette’s multiple-sclerosis diagnosis, he’d done what he could with meagre funds to keep her at their home in Queanbeyan, a town straddling the New South Wales and Australian Capital Territory border. |
| Denis, an army veteran from Bombala, pulled out his tools when his wife’s health began to deteriorate in 2009. | Denis, an army veteran from Bombala, pulled out his tools when his wife’s health began to deteriorate in 2009. |
| He fashioned blocks to prop up the bed, built access ramps for the house and car, and installed an extension hose and rubber linings in a DIY bathroom conversion. | He fashioned blocks to prop up the bed, built access ramps for the house and car, and installed an extension hose and rubber linings in a DIY bathroom conversion. |
| One night last year, it all became too much. Denis found himself unable to lift his wife out of bed. | One night last year, it all became too much. Denis found himself unable to lift his wife out of bed. |
| Forced to call the hospital for help, he resigned himself to the inevitable. | Forced to call the hospital for help, he resigned himself to the inevitable. |
| Confused and scared, Anne looked at her husband, tears welling in her eyes. | Confused and scared, Anne looked at her husband, tears welling in her eyes. |
| “She said to me: ‘You’re kicking me out of the house?’,” Denis said. “I said: ‘I’m not kicking you out of the house, I can’t look after you anymore.’” | “She said to me: ‘You’re kicking me out of the house?’,” Denis said. “I said: ‘I’m not kicking you out of the house, I can’t look after you anymore.’” |
| Annette has now spent eight months in a live-in care facility in the suburb of Monash, in Canberra’s southernmost valley. It’s a quiet part of the city, where the Brindabellas paint shades of blue across the southern horizon. | Annette has now spent eight months in a live-in care facility in the suburb of Monash, in Canberra’s southernmost valley. It’s a quiet part of the city, where the Brindabellas paint shades of blue across the southern horizon. |
| For Annette, it’s a prison. | For Annette, it’s a prison. |
| “She rings me up in bloody tears,” Denis said. | “She rings me up in bloody tears,” Denis said. |
| He quickly resolved to do whatever he could to bring her back, and applied for support through the National Disability Insurance Scheme. | He quickly resolved to do whatever he could to bring her back, and applied for support through the National Disability Insurance Scheme. |
| His experience mirrors that of many who have dealt with the scheme. An immense hope and enthusiasm for the NDIS – one of the largest and most important reforms in the nation’s history – has been tempered by a slow, daunting, and confusing bureaucracy. | His experience mirrors that of many who have dealt with the scheme. An immense hope and enthusiasm for the NDIS – one of the largest and most important reforms in the nation’s history – has been tempered by a slow, daunting, and confusing bureaucracy. |
| Denis sought and was granted a $150,000 NDIS package to support Anne, which included $30,000 for a bathroom renovation. | Denis sought and was granted a $150,000 NDIS package to support Anne, which included $30,000 for a bathroom renovation. |
| He got a quote from a builder friend for a professional bathroom fit-out, which came in at $18,000, well below what he had been approved to spend. | He got a quote from a builder friend for a professional bathroom fit-out, which came in at $18,000, well below what he had been approved to spend. |
| Denis had been given prior approval to self-manage the funds, but sent in a request form for the work to the National Disability Insurance Agency. | Denis had been given prior approval to self-manage the funds, but sent in a request form for the work to the National Disability Insurance Agency. |
| He was bounced between staff and state offices. No one could give him a straight answer. One moment the form had arrived, and was being processed. A week later, Denis was told it hadn’t been received and needed to be sent again. | He was bounced between staff and state offices. No one could give him a straight answer. One moment the form had arrived, and was being processed. A week later, Denis was told it hadn’t been received and needed to be sent again. |
| Eventually, the builder told Denis he was running out of time. | Eventually, the builder told Denis he was running out of time. |
| Anne’s support plan, under the heading of “home modifications”, tells Denis that the “NDIS will pay me and my support provider directly for these supports”. | Anne’s support plan, under the heading of “home modifications”, tells Denis that the “NDIS will pay me and my support provider directly for these supports”. |
| He assumed that meant he could pay for the work and be reimbursed. | He assumed that meant he could pay for the work and be reimbursed. |
| Several weeks later, after the job was finished, the NDIA came back to him. He had used a builder who wasn’t deemed a registered provider by the agency, so could not be reimbursed for the funds. | Several weeks later, after the job was finished, the NDIA came back to him. He had used a builder who wasn’t deemed a registered provider by the agency, so could not be reimbursed for the funds. |
| The requirement for registered builders is designed as a safeguard, to ensure only experienced and properly qualified builders carry out home modifications. | The requirement for registered builders is designed as a safeguard, to ensure only experienced and properly qualified builders carry out home modifications. |
| But Denis says he was never told about the need for a registered builder. He’s now $18,000 out of pocket and without the means to bring his wife home. | But Denis says he was never told about the need for a registered builder. He’s now $18,000 out of pocket and without the means to bring his wife home. |
| The NDIA asked him to lodge an appeal. | The NDIA asked him to lodge an appeal. |
| “To me that’s not good enough – three months more, that’s another 12 weeks in that bloody home,” he said. “They’re not paying out, they’re not seeing the stress she’s going through.” | “To me that’s not good enough – three months more, that’s another 12 weeks in that bloody home,” he said. “They’re not paying out, they’re not seeing the stress she’s going through.” |
| A spokeswoman for the NDIA said it is working to resolve the situation, and that it typically encourages participants to undertake large home modifications with the assistance of a building works program manager, who is a registered provider. | A spokeswoman for the NDIA said it is working to resolve the situation, and that it typically encourages participants to undertake large home modifications with the assistance of a building works program manager, who is a registered provider. |
| It’s been a big week for the NDIS. On Thursday, the Productivity Commission released a long-awaited report, which warned the scheme was not going to meet its target of 475,000 participants by 2019-20. | It’s been a big week for the NDIS. On Thursday, the Productivity Commission released a long-awaited report, which warned the scheme was not going to meet its target of 475,000 participants by 2019-20. |
| The report warned the pace of the roll out was compromising the quality of decision-making and the adequacy of support packages. Participants were left confused about their support plans. | The report warned the pace of the roll out was compromising the quality of decision-making and the adequacy of support packages. Participants were left confused about their support plans. |
| “Poor consultation and communication appear to have resulted in scheme participants being surprised by, or confused about, the content of their final plan,” the report said. | “Poor consultation and communication appear to have resulted in scheme participants being surprised by, or confused about, the content of their final plan,” the report said. |
| “Sufficiently deep consultation practices need to be built into the NDIA’s planning process, so that plans adequately meet participants’ support needs.” | “Sufficiently deep consultation practices need to be built into the NDIA’s planning process, so that plans adequately meet participants’ support needs.” |
| They’re not paying out, they’re not seeing the stress she’s going through | They’re not paying out, they’re not seeing the stress she’s going through |
| Once a plan was in place, there was a lack of support for participants to navigate the NDIS and work out what they could and couldn’t do. | Once a plan was in place, there was a lack of support for participants to navigate the NDIS and work out what they could and couldn’t do. |
| “Some scheme participants are finding it hard to understand and interact with the NDIS, particularly because the scheme is a new way of allocating and supplying disability supports,” the productivity commission found. | “Some scheme participants are finding it hard to understand and interact with the NDIS, particularly because the scheme is a new way of allocating and supplying disability supports,” the productivity commission found. |
| “Providing timely, accessible and useful information to participants about providers will help people with disability access their NDIS supports, and better exercise choice and control.” | “Providing timely, accessible and useful information to participants about providers will help people with disability access their NDIS supports, and better exercise choice and control.” |
| Support coordination – a key plank in helping participants understand their plans and the NDIS – was also struggling to meet demand. | Support coordination – a key plank in helping participants understand their plans and the NDIS – was also struggling to meet demand. |
| The commission heard evidence that support coordination was only being given to participants for a fixed period of time, rather than on the basis of need. | The commission heard evidence that support coordination was only being given to participants for a fixed period of time, rather than on the basis of need. |
| People with Disability Australia, an advocacy group, has heard worrying reports about failures in support coordination. | People with Disability Australia, an advocacy group, has heard worrying reports about failures in support coordination. |
| Senior policy officer Meg Clement-Couzner said participants – particularly those, like Denis, who are self-managing their funds – were left confused about the process for acquiring support. | Senior policy officer Meg Clement-Couzner said participants – particularly those, like Denis, who are self-managing their funds – were left confused about the process for acquiring support. |
| She said that made support coordination an “ongoing necessity”. | She said that made support coordination an “ongoing necessity”. |
| “One major thing that we’re hearing is that support coordination is being limited to really complex cases,” she told Guardian Australia. | “One major thing that we’re hearing is that support coordination is being limited to really complex cases,” she told Guardian Australia. |
| “It’s something that, particularly in the stages of transition in people’s lives – or perhaps people haven’t self managed before – support coordination can be really helpful in circumstances like that.” | “It’s something that, particularly in the stages of transition in people’s lives – or perhaps people haven’t self managed before – support coordination can be really helpful in circumstances like that.” |
| Last month a joint standing parliamentary committee inquiry heard evidence the scheme had become “faceless” and impossible to navigate for participants. | Last month a joint standing parliamentary committee inquiry heard evidence the scheme had become “faceless” and impossible to navigate for participants. |
| High staff turnover, a lack of face-to-face interaction during planning, and a bureaucratic, complex system were leaving participants stranded. | High staff turnover, a lack of face-to-face interaction during planning, and a bureaucratic, complex system were leaving participants stranded. |
| Kalparrin, an early intervention early childhood support provider based in Victoria, warned that was at odds with a sector designed to provide “human services”. | Kalparrin, an early intervention early childhood support provider based in Victoria, warned that was at odds with a sector designed to provide “human services”. |
| “What we’ve found with the majority of our clients … what they have come up against is a highly systemised, highly protective and very difficult to engage with system, based on telephone calls and rigid procedures, which is the exact opposite of the very sector that the scheme is designed to service,” Kalparrin’s chief executive, Mark Baigent, told the inquiry. | “What we’ve found with the majority of our clients … what they have come up against is a highly systemised, highly protective and very difficult to engage with system, based on telephone calls and rigid procedures, which is the exact opposite of the very sector that the scheme is designed to service,” Kalparrin’s chief executive, Mark Baigent, told the inquiry. |
| On Wednesday, a day before the productivity commission’s report, the NDIA announced an overhaul of the way it interacts with participants. | On Wednesday, a day before the productivity commission’s report, the NDIA announced an overhaul of the way it interacts with participants. |
| The changes will make face-to-face interactions standard, ending an over-reliance on phone calls to make complex decisions about the support needs of individuals. | The changes will make face-to-face interactions standard, ending an over-reliance on phone calls to make complex decisions about the support needs of individuals. |
| It will also create a single point of contact for participants, improve its communications, and revamp an online portal used to manage plans and payments, in an attempt to make it accessible and simple. | It will also create a single point of contact for participants, improve its communications, and revamp an online portal used to manage plans and payments, in an attempt to make it accessible and simple. |
| The NDIA chief executive, Robert De Luca, sees the current point in the transition as an opportunity to take stock of what has worked, and what hasn’t. The new pathway will be tested in a pilot and then progressively rolled out if effective. | The NDIA chief executive, Robert De Luca, sees the current point in the transition as an opportunity to take stock of what has worked, and what hasn’t. The new pathway will be tested in a pilot and then progressively rolled out if effective. |
| De Luca concedes the quality of the conversation with participants needed improvement, but does not believe the speed of the rollout is the source of the issues with the NDIS transition. | De Luca concedes the quality of the conversation with participants needed improvement, but does not believe the speed of the rollout is the source of the issues with the NDIS transition. |
| “The issues don’t relate to the pace of the rollout,” he told Guardian Australia. “They relate to the quality of the conversation, the quality of the plan development, the technology in terms of the portal.” | “The issues don’t relate to the pace of the rollout,” he told Guardian Australia. “They relate to the quality of the conversation, the quality of the plan development, the technology in terms of the portal.” |
| Labor believes at least some of the current problems with the NDIS are caused by a staff cap for the agency, which limits its direct employees to 3,000. The Productivity Commission recommended that cap be changed to allow the agency to better respond to demand. | Labor believes at least some of the current problems with the NDIS are caused by a staff cap for the agency, which limits its direct employees to 3,000. The Productivity Commission recommended that cap be changed to allow the agency to better respond to demand. |
| The commission also found the rapid growth required in the disability workforce was simply not occurring. | The commission also found the rapid growth required in the disability workforce was simply not occurring. |
| The NDIS will need 70,000 workers in the sector to meet demand at full operation. That will require one in every five new jobs created in Australia to be in the disability sector. | The NDIS will need 70,000 workers in the sector to meet demand at full operation. That will require one in every five new jobs created in Australia to be in the disability sector. |
| The shadow social services minister, Jenny Macklin, has called on the government to urgently act, including by removing the NDIA staff cap. | The shadow social services minister, Jenny Macklin, has called on the government to urgently act, including by removing the NDIA staff cap. |
| “There are just not enough staff. Not enough staff both inside the National Disability Insurance Agency, not enough providers providing the services that people need,” she said. | “There are just not enough staff. Not enough staff both inside the National Disability Insurance Agency, not enough providers providing the services that people need,” she said. |
| “The reason for this is that the government has imposed a cap on the staff in the NDIA. That’s been in operation now for a number of years and it is severely restricting the capacity of people with disability to get in to the scheme and to get the services that they need.” | “The reason for this is that the government has imposed a cap on the staff in the NDIA. That’s been in operation now for a number of years and it is severely restricting the capacity of people with disability to get in to the scheme and to get the services that they need.” |
| Denis, now 70, has taken to distance running to raise money for MS. He recently ran around parliament house in protest of deeming rates charged on his wife’s live-in care. | Denis, now 70, has taken to distance running to raise money for MS. He recently ran around parliament house in protest of deeming rates charged on his wife’s live-in care. |
| But he’s running out of steam in his race against the NDIS. Disillusioned and angry, he’s now reluctant to re-engage with the system. | But he’s running out of steam in his race against the NDIS. Disillusioned and angry, he’s now reluctant to re-engage with the system. |
| The erosion of trust in the NDIS is a concern to many in the sector, particularly for those with psychosocial disabilities. Once they’re disengaged, the most vulnerable groups will be hard to bring back. | The erosion of trust in the NDIS is a concern to many in the sector, particularly for those with psychosocial disabilities. Once they’re disengaged, the most vulnerable groups will be hard to bring back. |
| “Things can’t go on like this,” he said. | “Things can’t go on like this,” he said. |
| “People can’t afford this, and people need the NDIS to work.” | “People can’t afford this, and people need the NDIS to work.” |
| National disability insurance scheme | National disability insurance scheme |
| Multiple sclerosis | Multiple sclerosis |
| Health | Health |
| Australian politics | Australian politics |
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