Submission to the Joint Standing Committee on the

National Disability Insurance Scheme: Inquiry into the Provision of Assistive Technology Author: Summer Foundation, September 2018

Contact: Dr George Taleporos, Policy Manager

SUMMARY

The Summer Foundation works to change human service policies and practices related to young people (18-64 years old) living in, or at risk of entering residential aged care (RAC) facilities. Our vision is that young people with disability and complex support needs will have access to services and housing that supports their health and wellbeing and a good life in the community.

We are committed to working with key stakeholders to achieve accessible and affordable supports for young people with disability and complex support needs, to enable them to live in the community. We are committed to working to ensure that the NDIS realises its potential to end the forced admission of young people with disability into nursing homes.

This submission responds to the Joint Standing Committee on the National Disability Insurance Scheme Inquiry into the Provision of Assistive Technology Terms of Reference:

  1.   The transition to the NDIS and how this has impacted on speed of equipment provision.

  4.   The role of the NDIA in approving equipment requests.

Through our work journey mapping the experiences of Young People in Residential Aged Care participating in the NDIS, it is clear that access to assistive technology is not streamlined for people with disability and complex needs. The case studies in this submission highlight the delays in NDIS planning and approvals that can cause extended waiting periods of over a year. These can result in significant damaging impacts on health, safety and well-being. Therefore, we recommend the NDIA take the following actions:

  1.   Enable early access to funding for coordination and completion of assessments –
      People stuck in hospital and in Residential Aged Care should be provided with early access to funding for the necessary support coordination and allied health Assistive Technology assessments to reduce unnecessary stays in hospital and in aged care.
  
  2.   Remove the hurdles to accessing assistive technology –When funding is approved at the planning stage, participants should not be required to apply a 2nd time for the same funding.
  
  3.   Reduce the time delays for funding approval – NDIA should streamline processes to provide timely approvals (within 28 days) when the necessary assessment reports have been provided.

Prioritise the Assistive Technology needs of those waiting in hospital and at risk

        of admission into Residential Aged to be prioritised – NDIA should put processes
         in place to track and expedite these funding requests (guarantee approval within
     14 days when the necessary assessment reports have been provided)

Young people in aged care in Australia

As at June 30 2017, there were 6242 young people in RAC. According to Senate Estimates, over 2000 have now entered the NDIS with the most entering in the past 12 months.

Young people with disability living in RAC are one of the most marginalised and isolated groups of people in our society. Fifty three per cent of young people in RAC receive a visit from a friend less than once a year and 82% seldom or never visit their friends. They generally lead impoverished lives, characterised by loneliness and boredom. They are effectively excluded from society with 45% seldom or never participating in leisure activities in the community.

The NDIS has the potential to stop young people being forced into RAC. However, they are facing significant barriers to accessing the NDIS. Many do not know how to go about applying for support from the NDIS. They face challenges developing and implementing their NDIS plans. The problems experienced in planning include a lack of Specialist Disability Accommodation (SDA) funding, insufficient funding for equipment and support such as assistive technology, and a lack of expertise among planners and support coordinators working with people who have high and complex support needs.

NDIS participants can experience barriers to provision of assistive technology resulting in delays in hospital discharge and admission to RAC. For young people already in RAC their quality of life can be seriously affected. The Case Studies below illustrate the impact of long wait times, unclear NDIS approval processes, and delays in receiving vital mobility and communication equipment.

Case Study 1

‘I hope I am alive to see my wheelchair’ - Michele Day’s story

 Four years ago, Michele was living in her own home with the support of carers. When her MS progressed, her care needs increased. Michele had no other option but to move into aged care. Michele registered with the NDIS in 2016, but the process was halted when she was admitted to hospital with pneumonia. The NDIS later called the nursing home to check on Michele’s circumstances and she was reconnected.

Case Study 2

‘Doesn’t mean because you have a disability, that you should have to wait’- Daniel Black’s story

 Daniel was born with a very rare progressive form of Cerebral Palsy. Daniel's marriage broke down after 27 ½ years, shortly after this he was hospitalised due to weakness in his muscles. At the hospital Daniel was advised he would need to move into a nursing home.

  Daniel's first contact with the NDIS was a call out of the blue. At the first planning meeting, he describes the planner as a 21 year old with not much life experience. The social worker accompanying Daniel at the meeting decided this wasn't done correctly so a review was requested. Daniel had a review with a different planner and says he was 'awesome'; he had a Dad in a nursing home so was very understanding.

The NDIS helped Daniel move into his supported accommodation, although he did need help from other sources. Daniel was told that he would have his new electric wheelchair when he arrived at his new facility in October 2017. Two weeks ago, 11 months later, Daniel finally received his electric wheelchair. He is hoping this will help with his pain levels to enable him to get out more. Daniel was also promised a commode on arrival. Daniel says "I have a right like a normal person to have a shower every day." It took 9 weeks to receive the commode.

https://youtu.be/SVEiHcrAsY4 Link to Daniel’s digital story

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Case Study 3

‘The NDIS has good bones, a good foundation. It really just needs fine tuning’ - Bevan and Kim Nowland’s story

 Kim’s son, Bevan, acquired a brain injury from a dirt bike accident. Kim fought hard to get the best care and rehabilitation for her son. Kim had bought her own home 2 years before Bevan’s accident, and modifications had just been completed for her sister with a disability to move in. These modifications were now needed for her son.

 Bevan was discharged from rehab on 31 Aug 2016. He came home on a package from disability services QLD. Kim knew the NDIS was coming; she had already been to some workshops and she knew it would (in her words) ‘dictate’ their future. Kim’s first meeting with the NDIS was over the phone, 6 months after Bevan had returned home. The NDIS representative told her to go ahead and have a ramp installed, as ‘the NDIS would cover that cost.’

When NDIS planners were next in contact Kim was informed the ramp couldn’t be funded unless it went through their processes and was approved by an NDIS builder. The lady on the phone apologised to Kim who was now left with a bill for $3,300.

 Bevan’s plan was approved a month later. Initially it looked fantastic and was very broad. Kim didn’t really understand the wording on the plan so asked a lot of questions before signing off on it. She was assured that everything she had specified was covered. Then Kim found that the things she had been assured were covered, but needed approval. She had to gather quotes and documents from specialists, to then have the documentation questioned by NDIS workers. Kim says the lengthy delays affected not just Bevan, but the people carrying out the work. Quotes expire while they wait for approval.

Kim first provided a quote for the ramp rails needed at her house in March 2017. Approval was given on 15 November 2017 after Kim was required to collect additional quotes due to the expiration of the original quotes after 3 months. The money from the NDIS was received 10 February 2018, and the rails were finally installed in April 2018. The long wait hinders the process of the participant's recovery and lifestyle. Kim believes this is a safety issue.

https://youtu.be/Y8m9DE1_INY Link to Bevan and Kim’s story

Bevan and Kim found that the lack of clear information about NDIA approvals - as a later step in the planning process - had significant financial impact for them. Kim was mis-advised by the planner that the NDIS would reimburse her if she paid to have a ramp installed prior to NDIA plan approval. Bevan and Kim also experienced delays in approval for a ramp rail. Lengthy approval processes cause additional problems as quotes for the work can expire before approval is received. Negative health impacts of the unsafe environment include slower recovery and mobility impediments to community activities.

Case Study 4

‘I wouldn’t be home without the NDIS’ - Deborah Huismann

 Deborah, a senior secondary school English Teacher, started her journey on Christmas Eve 2015. She went from thinking about what she was cooking for Christmas Day to being in ICU in a coma with all her organs shutting down. A few days earlier a kitten had scratched Deb’s leg, it had turned to necrotising fasciitis. Deb spent the next 12 months in hospital and rehab. It came as a shock to her to be told that she would have to go to a nursing home; no one had discussed any options with her.

 Deb’s discharge from hospital to a nursing home was a difficult experience. She was told the NDIS wouldn’t roll out in her area until October 2018, therefore she would have to rely on state funding for her equipment needs. Deb received a call at the nursing home from DHHS telling her that she was eligible for early transition to the NDIS. Four months later Deb received a letter advising of her acceptance into the NDIS. Seven months later,
Deb had her NDIS planning meeting. Her plan was approved 1 month later.

 Deb’s plan included a bed, commode, electric wheelchair and ramps for her new home. All this equipment would be needed before she could leave the nursing home. Deb’s OT sent the required reports to the NDIS in September and a few months later, when Deb had not heard anything, she contacted her Planner. The Planner assisted in the request being fast tracked so she could leave the nursing home. Shortly afterwards the

equipment started to arrive. Deb, along with her sister, moved into their new home in February 2018 - 8 months before the scheduled rollout date for her region.

https://www.youtube.com/watch?v=7Tfl4E1r5_Q Link to Deb’s digital story

Deb’s story is included to demonstrate the positive outcomes when access to NDIS is prioritised through the processes of ‘early transition’ and ‘fast tracking’. Deb’s urgent need to leave RAC was recognised and addressed through speedy completion of the NDIS planning and approval of the plan supports. With the Planner’s successful request for NDIS ‘fast tracking’ of the activation of the supports, the necessary Assistive Technology arrived promptly. This enabled Deb to leave the nursing home just over a year after her admission and move to accommodation of her choice.

Recommendations

  1.   Enable early access to funding for coordination and completion of assessments – People stuck in hospital and in Residential Aged Care should be provided with early access to funding for the necessary support coordination and allied health Assistive Technology assessments to reduce unnecessary stays in hospital and in aged care.
  
      2.   Remove the hurdles to accessing assistive technology –When funding is approved at the planning stage, participants should not be required to apply a 2nd time for the same funding.
    
        3.   Reduce the time delays for funding approval – NDIA should streamline processes

to provide timely approvals (within 28 days) when the necessary assessment reports have been provided.

          4.    Prioritise the Assistive Technology needs of those waiting in hospital and at risk of admission into Residential Aged to be prioritised – NDIA should put processes in place to track and expedite these funding requests (guarantee approval within 14 days when the necessary assessment reports have been provided)