NDIA Accountability Project

Supporting unpaid carers in Western Australia

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Submission to the

Parliamentary Joint Standing Committee on

the National Disability Insurance Scheme

Inquiry into the Capability and Culture of the NDIA

December 2022

About Carers WA

Carers WA is the peak body representing the needs and interests of carers in Western Australia and is part of a national network of Carers Associations. Carers provide unpaid care and support to family members and friends who are living with disability, mental illness, long term health conditions (including a chronic condition or terminal illness), have an alcohol or drug dependency, or who are frail aged. The person they care for may be a parent, partner, sibling, child, relative, friend or neighbour.

Caring is a significant form of unpaid work in the community and is integral to the maintenance of our aged, disability, health, mental health, and palliative care systems.

Some important facts about carers include:

  • There are currently 2.65 million unpaid carers in Australia.
  • There are more than 320,000 families and friends in a caring role in Western Australia.
  • The replacement value of unpaid care, according to a report undertaken by Deloitte, Access Economics, “The economic value of unpaid care in Australia in 2020” is estimated at $77.9 billion per annum.

182 Lord Street

PERTH WA 60000

Phone: 1300 227 377

Fax: (08) 9228 7488

Email: info@carerswa.asn.au

Table of Contents

1.0 Introduction …………………………………………………………………………………………………………. 1

2.0 General Feedback …………………………………………………………………………………………………. 2

2.1 Accessing information, support and services ………………………………………………………… 2

 2.1.1 Access request and pre-planning document preparation ......................................... 2

 2.1.2 Criteria for Approval .................................................................................................. 4

 2.1.3 Support Coordination ................................................................................................ 4

 2.1.4 Plan Reviews .............................................................................................................. 5

 2.1.5 Communication and Effective Complaints ................................................................ 6

 2.1.4 Workforce challenges ................................................................................................ 6

 2.1.1 Access to supports for children with disability .......................................................... 7

2.2 Referral Pathways ……………………………………………………………………………………………… 8

2.3 Reliance on Informal Supports …………………………………………………………………………….. 9

2.4 Thin markets in service provision ……………………………………………………………………….. 10

 2.4.1 Access to respite services in Geraldton ................................................................... 11

 2.4.2 Service provision in Broome .................................................................................... 12

Summary of Recommendations ………………………………………………………………………………. 13 Conclusion ……………………………………………………………………………………………………………….. 14 Appendix 1: Complex Case Studies ……………………………………………………………………………… 15

Case Study 1 – Mary and Tony ………………………………………………………………………………… 15

Case Study 2 – Susan and Sean ……………………………………………………………………………….. 17

Case Study 3: Rita and David …………………………………………………………………………………… 19 References ………………………………………………………………………………………………………………. 21 Carers WA Submission: Inquiry into the Capability and Culture of the NDIA ii

1.0 Introduction

Carers WA appreciates the opportunity to provide feedback to the Parliamentary Joint Standing Committee on the National Disability Insurance Scheme, in response to the Inquiry into the Capability and Culture of the NDIA.

Carers WA welcomes and commends government on this Inquiry and other measures being undertaken with the intent to improve the NDIA and NDIS, which includes putting people with disability back at the centre of the NDIS. Given the significant role that carers1 play in supporting those whom they care for, it is imperative that these measures result in the recognition and inclusion of carers within NDIS processes, and ensure carers are also themselves adequately supported. This is of particular importance for carers who provide care to one or more people with higher care needs or for an extended period of time, for which their caring roles comes at a significant personal cost and with an increased carer burden.

In June 2020, Carers WA provided a submission2 and appeared at a hearing3 of the Joint Standing Committee in response to its Inquiry into the National Disability Insurance Scheme. This submission raised several issues of significant concern for WA carers, many of which have not changed and have become exacerbated by additional stresses such as the COVID-19 pandemic and workforce issues.

Western Australia has had a unique journey with the implementation and ongoing operation of the NDIS in the state. This journey has produced a variety of specific issues and experiences for users and navigators of the system, many of which are relevant to informal carers and to the terms of reference of this Inquiry, as well as other issues which are common to those seen in other state and territory jurisdictions. This submission will outline the issues of relevance to this Inquiry, with supporting case studies to further demonstrate their impact on carers in WA.

Carers WA would welcome the opportunity to engage further with the Joint Standing Committee on these issues, and looks forward to seeing the outcomes of this Inquiry.

2.0 General Feedback

2.1 Accessing information, support and services

Carers play a significant role in supporting the independence of those they care for and often act as advocates and system navigators on the care recipient’s behalf. However, carers are only recognised and identified on an ad-hoc basis by the NDIA and in the NDIS system, with limited to no provision for support for the carer themselves for the benefit of the participant.

This has a particular impact on carers who provide care to one or more people with higher care needs or for an extended period of time, for which their caring roles comes at a significant personal cost. For carers who are in their caring role for a prolonged period, the most impacted 10% will lose at least $940,000 in lifetime income and $444,500 in retirement savings5. The 2022 Carer Wellbeing Survey also revealed that carers who had a higher care load (46.3%) undertook less work than they wanted to, had poorer wellbeing than other carers, and were amongst the least likely groups to have accessed support from family and friends in the last 12 months6.

Carers in general have significantly higher rates of psychological distress than the average Australian. Over half of carers have poor wellbeing, compared to 25.4% of adult Australians. Only 17.1% of carers reported having good health, compared to 47.9% for the average Australian7. By age 67 primary carers will lose $175,000 in superannuation and $392,500 in lifetime earnings. Additionally, for every year someone is a primary carer they will lose on average $17,700 in superannuation and $39,600 in lifetime earnings8.

Further, the value of this care has been valued by Deloitte Access Economics at $77.9 billion per year9. However, despite this value, carers continue to face a lack of recognition, inclusion and support. This needs to be addressed within the Joint Standing Committee’s final report and recommendations for this Inquiry.

2.1.1 Access request and pre-planning document preparation

Within Carers WA’s June 2020 submission to the Joint Standing Committee, issues were reported with a lack of one-on-one support for NDIS access request preparation, and inadequate support for pre-planning for the initial planning meeting with the NDIS. While Local Area Coordinators (LACs) have a role supporting people with both these processes, carers reported that LACs in practice were providing weblinks for access request preparation assistance and not delivering support for pre-planning.

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA

The process to gain access the NDIS is one which requires significant time, knowledge and cost. This is work which often falls to carers, in addition to their caring role, as well as very little support to prepare documentation needed for an access request – a process which carers have reported to be confusing and stressful due to this lack of support. Carers report spendings 12-24 months on preparation of access request and pre-planning document preparation.

Following a successful access request, the participant and/or their carer will enter the NDIS planning cycle. This involves pre-planning; considering participant goals and the necessary supports to reach these goals; participation in a guided conversation with a NDIS planner or LAC to gather information, develop goals and discuss support; and the subsequent allocation of an individual package of supports from the NDIS. Carers have previously and continue to report a lack of support and inconsistent levels of support within this process, which can contribute to the participant receiving an inadequate plan.

The impact of these inconsistent levels of support and the stress which carers experience is reflected in Case Study 2 within Appendix 1, within which the carer Rita* describes her feelings in the lead up to her son David’s* Planning Meeting:

Extract from Complex Case Study 2: Appendix 1

In the build up to getting the Planning Meeting, Rita* described how nerve wracking it was for her, as a lot was riding on getting the funding. She felt an overwhelming sense of responsibility, couldn’t sleep well for weeks and said it affected her mental health as she could not think of anything else. It was not an experience she said would ever like to go through again. Rita also found it very challenging to try to explain to someone she had never met the details of someone’s life with a mental illness, and how this affected their day-to-day life – particularly when David* would often just say he was fine.

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA

Rita* was fortunate to have had a non-NDIS support person available to guide and support her at the Planning Meeting, which she felt helped her to make an accurate representation of the level of support that her son needed. She also initially had a good experience with the level of support provided by the first LAC allocated to her, but then the second LAC she was allocated to only sent her an initial email telling her who they were, with no further contact until her son’s plan was up for renewal eight months later. This is reflective of a wider issue of staffing expertise, experience and training.

This experience is also demonstrative of a wider issue with both carers and participants reporting limited to no contact from LACs, with no designated contact person and no continuity of contact. Carers report that often when a person within the LAC role is changed, the carer and participant will not even receive a notification of this change.

Carers WA recommends that more one-on-one support be provided for access requests and pre-planning document preparation to NDIA applicants, participants and carers.

2.1.2 Criteria for Approval

Carers have reported instances of very similar cases receiving different outcomes. Carers WA recommends the criteria for NDIS approval be clarified and the development of education for NDIA, NDIS and other relevant staff to ensure outcomes are clear and consistent.

2.1.3 Support Coordination

Following the allocation and approval of a plan, participants and/or their carers need to engage providers to implement the plan. Carers have reported receiving a plan in the mail and having no knowledge of how to go about implementing the plan. Further, where support coordination is in place, carers report limited to no support being delivered. Carers WA recommends additional support and funding is provided for support coordination for plan management, particularly for participants new to the scheme or when circumstances have changed. We also recommend flexibility is built into plan management and engagement for changes in funding when required for plan management.

2.1.4 Plan Review and Plan Reassessments

The plan review and reassessment process is a source of significant stress to carers, particularly when delays and complications occur which can extend this process over many months. In the meantime, the person with disability and their carer can be left with no funding support, meaning the carer must take on the additional caring responsibilities.

In Case Study 1 in Appendix 1, the carer Mary* experienced having to provide an outdated version of her son Tony’s* NDIS plan with prospective providers when the current service provider gave them 30 days to find a new one.

Extract from Complex Case Study 1: Appendix 1

Mary* worked with Tony’s* support coordinator, but had great difficulty in trying to find a )new service provider in this time frame which had the capacity to manage a person with )complex care needs of disability, mental health and health conditions. They approached )seven different providers, all of which had an intake wait time ranging from two to four )weeks. Tony’s NDIS plan also underwent a scheduled review during this time, meaning he no )longer met the criteria for Independent Living Options (ILO) funding and instead needed )Supported Independent Living (SIL) funding. There was also an accompanying long wait for )his SIL plan to be approved, meaning Mary had to share an outdated plan with potential )providers even though Tony no longer met the criteria in the plan.

In Case Study 2 in Appendix 1, the carer Susan* and participant Sean* experienced a loss of )funding during Sean’s plan review process, which impacted on funding being available to cover services.

Extract from Complex Case Study 2: Appendix 1

While this method was successful in getting the pharmacy paid for a new CPAP machine, the plan review process then took some time to be resolved, during which there was not funding to pay Sean’s* plan manager. The revised plan which was sent through was also uncorrected and not resolved of several items, including the CPAP machine funding, which Susan had to further follow up to get corrected.

Case Study 3 in Appendix 1 is demonstrative of how stressful plan review reassessment $time can be on carers.

Extract from Complex Case Study 3: Appendix 1

The new LAC sent Rita an email telling her who they were, then she did not hear from them again until David’s plan was up for renewal eight months later. David’s NDIS plan was renewed with the same level of funding, with only limited input required from the LAC. Rita )described how relieved she was when the plan was renewed, and how nerve-wracking ,renewal time was, with no certainty on if funding was going to be cut or not.

Carers WA recommends a review of plan review and reassessment processes, including provision of increased one-on-one support to carers and participants and reduction of time taken for reviews and reassessments.

Communication and Effective Complaints

Carers report experiencing communication issues with the NDIA and the NDIS Quality and Safeguards Commission, particularly with the number of times required to contact the NDIA to get advice and support, and getting effective results from formal complaints.

Carer Mary* experienced these issues when she filed several formal complaints to her son’s service provider and the NDIS Quality and Safegards Commission over a six-month period, with no improvements seen over this timeframe. Mary also again experienced these issues when her son’s provider gave a firm 30-day notice period for them to find a new provider, and she was having difficulty finding an appropriate provider in this timeframe.

Extract from Complex Case Study 1: Appendix 1

After going back and forth to the NDIS general number and NDIS Quality and Safeguards Commission several times for advice and support, Mary engaged advocates for herself and Tony. The result of the long-drawn out dispute was that the original service provider was found to have a duty of care to continue to provide Tony with support until the behaviour support plan was completed and support workers from the new service provider trained to support Tony. As a result over the changeover time the original service provider also improved communication regarding rostering, and stopped being reliant on Mary as a fall-back unpaid support worker.

Carers WA recommends communication and complaint processes within the NDIA and NDIS Quality and Safeguards Commission be reviewed to ensure effective outcomes from formal complaints, which are also communicated back to the lodger in a timely manner.

Workforce challenges

Carers have reported workforce challenges which impact on the quality of care which NDIS participants are receiving. This is inclusive of a lack of key workers such as support workers; high staff turnover, which results in carers needing to retrain support staff again and again; and these workforce challenges contributing to delays in times to get services in place. These workforce challenges are further expanded on in Section 2.4 of this submission.

2.1.1 Access to supports for children with disability

Carers have reported that it is easier to access Carer Gateway services to support them in their caring role, while caring for children with disability, than accessing any NDIS support. At times such as school holidays where their children cannot access mainstream supports, carers are having to access respite through the Carer Gateway in order to maintain their employment. Specific cases include:

  • Carer Gateway funding for a family to access in-home respite for their two young children with disability, due to a lack of appropriate options around childcare or babysitting services;
  • Carer Gateway funding for a carer in a regional area to support with in-home respite for her child with a disability. Their NDIS funding was already exhausted, there were no accessible or inclusive school holiday program providers in town and the carer had to work through school holidays.

Carers WA recommends increased options be provided for accessible childcare and school holiday programs for children with disability, as well as options to increase support for these services, either through the NDIS or an outside medium such as reform to the childcare subsidy. This would in turn would support carers of children with disability to have the option of returning to the workforce earlier than when their child enters the school system, as well as provide increased opportunities for carers to participate in other economic, social and community opportunities. The importance of supporting carers through such an outcome is outlined within the Carers Recognition Act 2010 and The Statement for Australia’s Carers.

2.2 Referral Pathways

Carers WA is strongly supportive of and encourages referral pathways between government programs, the Carer Gateway and other carer support services. However, it is imperative that this referral process is undertaken to the most appropriate source of fundingand that accurate information is being provided by the representatives of other government programs.

At present, NDIA processes to identify and recognise carers are ad-hoc, depend on the carer already identifying as such, and do not involve set processes to ensure the carer themselves is also adequately supported to enable both the carer and person with disability to thrive and participate in the community10.

Where carers have reported MyAgedCare and NDIA representatives encouraging them to seek support through the Carer Gateway, this is prompted as an alternative to seeking funding from these respective programs or to fill gaps in funding within these programs. Carers are also given the impression that the Carer Gateway will be able to fix any problems they may be facing, where in actuality it has far more limited funding available than prospective amounts available through MyAgedCare or the NDIS for eligible applicants. This misrepresentation of the capacity of the Carer Gateway is concerning, and results in much frustration and stress for carers if they have to go back to MyAgedCare or the NDIS to again discuss funding options. This also serves to counteract the overarching purpose of the Carer Gateway to help build capacity and resilience for carers within their caring role.

Carers WA recommends carer identification, recognition, support and referral be a formalised part of the NDIA’s operational processes and procedures, to ensure clarity in capacity and coverage of individual government programs. As raised in Carers Australia’s submission to this Standing Committee11, this is recommended to include increased use of Carer Impact Statements during application and planning processes, along with increased transparent data, modelling and forecasting in public documents. Carers Australia has also included within their submission and previously raised the need for new and reformed data collection processes and reporting mechanisms, to better capture information about carers, separate to that of participants in the NDIS12 – this measure is also supported and recommended by Carers WA. This is recommended to be undertaken in consultation with Carers Associations and carers.

Further, Carers WA also recommends formalised education on carers, relevant legislation and carer support services be incorporated and/or improved within NDIA training programs. This is recommended to be undertaken in consultation with Carers Associations and carers.

2.3 Reliance on Informal Supports

There is a prevailing over-reliance on informal supports within the NDIA and NDIS, whether the NDIS participant is living in the same home as their carer, or the NDIS participant is largely independent and living in their own home. Despite this, carers report that the NDIS does not provide an allocation of funding for them to take a break, to better enable carers to support the person they care for (which should be above and beyond Carer Gateway funding to be reflective of the higher amount of care required of carers of NDIS participants) This reliance on informal supports then results in carers becoming burnt out and no longer being able to continue in their caring role.

While the NDIA previously acknowledged this issue and responded by reintroducing the term ‘respite’ into the NDIS price guide, within the ‘Short Term Accommodation and Assistance (including the provision of respite care)’ item; carers have since reported significant difficulty in getting this item added to a NDIS plan, as well as this item being amongst the first to be cut from a plan if it is reduced. Carers WA has also heard reports of organisations relinquishing their STA facilities due to them not being viable, and STA not being included in NDIS participants plans. Further, we have also had reports of STA facilities being used as long term accommodation options, further reducing the number of beds and facilities available amidst high demand for this service.

Indeed, this reliance on informal supports can very easily go to extremes, as seen in the excerpt below from Complex Case Study 1 in Appendix One of this submission:

Extract of Complex Case Study 1 in Appendix One

Mary’s* son Tony* has complex care needs and requires 24-hour support in his own home. There was a breakdown in communication between the support workers and the coordinator, and Tony and the coordinator.

This resulted in the support workers going to Mary to intervene and the coordinator not going to Tony’s house to monitor the workers. Due to this lack of oversight, the quality of care, support and hygiene in the house declined significantly. There was also not a clear and consistent roster of workers, which was highly stressful for Tony, and no clear person for Mary to contact or know who was on duty. In addition, support workers would leave and not be replaced until there were only four out of the original ten workers still working.

This resulted in Mary doing 17 (24-hour) shifts at her son’s house over a three-month period.

2.4 Thin markets in service provision

A prevalent issue seen in WA is thin markets in service provision, which impacts the intent of participant choice and control in the NDIS, as choice and control is limited where service providers are not available to provide specific and relevant supports. As such, Carers WA recommends NDIA investment in initiatives to combat thin markets, workforce challenges and shortfalls in service provision such as in respite services.

Access to services, including respite services, is a particular challenge for carers in regional areas of WA. Carers WA recently conducted a research project in response to feedback from service providers and carers in the regions regarding a lack of respite facilities in regional areas, staff shortages, and difficulty in meeting demand. The need for improved regional service offerings is further demonstrated by recent reports from Carers WA’s outreach teams of concerning shortfalls of some services in WA regional areas.

Preliminary data on the main challenges being faced by WA regional service providers included the main themes of:

  • Respite access, availability, duration and staffing levels.
  • Regional barriers to accessing services, including access to phones, local funding for carer supports, language barriers, culturally appropriate services and transport.
  • Having access to appropriately trained staff.
  • Staff shortages, particularly in in-home and aged care staffing.
  • Need for locally available and accessible community supports (in addition to those provided through the Carer Gateway). E.g. Local peer support networks; flexible respite; funding to increase rural and remote access (including transport and travel for support staff); and a high care respite program in the Mid-West.
  • Wait times and demand for services.
  • Awareness of the challenges faced by people living in rural/remote areas, such as: increased transport costs and availability, access to technology (internet, phones and computers), resource availability, education and access to local supports.
  • Need for increased funding: for high care consumers and for staff training to recognise stress in carers.

2.4.1 Access to respire services in Geraldton

One of Carers WA’s outreach teams recently travelled to Geraldton engage with service providers, health practitioners and carers in the region to provide information and support on carer services in the region. During this trip and throughout their discussions, a serious lack of availability of services was reported, as well as staff shortages and system complexity contributing to a lack of services (especially respite). These findings were consistent with those of the regional provider survey outlined above, as well as recent experiences of other Carers WA outreach teams in regional areas.

Below are some summaries of the conversations had regarding different types of service provision in the Geraldton region (as communicated to Carers WA):

Respite

Respite options are severely limited in Geraldton and the Midwest as a whole.

Low level/flexible respite:

This entails either a support worker going to the home to support the client or taking them out into the community, in order to give the carer a break. Flexible respite is on average only for a 2 hour block of time. Only four agencies were identified as having availability for flexible respite, with one other providing different forms of respite such as cottage respite (overnight) for low-level care. Another agency also provided mobile respite for up to 24 days (24/7 care), but this service books up quickly and only has one staff member who can provide it.

High level/residential respite:

Carers WA was informed there is only one high level respite bed available for the whole of the Mid-West Region (285,000 square kilometres), which is booked up several months in advance. If an emergency happens and the bed is needed for a permanent resident of the facility this respite bed is prioritised for those residents and respite bookings cancelled at short notice, requiring the person to go back on the waitlist.

Permanent residential care:

Only three residential aged care facilities are available in Geraldton. All three of these have extensive waitlists, averaging around 48+ applicants waiting for a bed.

As a result, families who are under significant carer stress may bring their loved one to the hospital as a last resort, where they are often admitted as a Care Awaiting Placement (CAP) patient, where they may wait in hospital for an extensive period of time (weeks/months) waiting for a bed to become available at a nursing home. During this time, their health may deteriorate, decondition and mental health decline, as they are limited in how much they do while on the ward – hence placing more pressure on an already over-stretched health service.

2.4.2 Service provision in Broome

Another of Carers WA’s outreach teams also recently visited Broome, during which a meeting with local service providers was held that revealed similar and additional issues contributing to thin markets in service provision. These included:

  • A lack of suitable and affordable housing, meaning both community members and workers cannot find a suitable place to live. This is coupled with a lack of staffing, with many services at capacity, with either no opportunities for new staff due to funding, staff retention or limited housing options.
  • A great need for respite, but with limited options due to limited services, staffing and funding to pay for respite and transport.

Summary of Recommendations

  1. More one-on-one support be provided for access requests and pre-planning document preparation to NDIA applicants, participants and carers. The criteria for NDIS approval be clarified and the development of education for NDIA, NDIS and other relevant staff to ensure outcomes are clear and consistent.
  2. Additional support and funding be provided for support coordination for plan management, particularly for participants new to the scheme or when circumstances have changed. We also recommend flexibility is built into plan management and engagement for changes in funding when required for plan management. The plan review process be reviewed, including provision of increased one-on-one support to carers and participants and reduction of time taken for plan reviews.
  3. Communication and complaint processes within the NDIA and NDIS Quality and Safeguards Commission be reviewed to ensure effective outcomes from formal complaints, which are also communicated back to the lodger in a timely manner.
  4. Increased options be provided for accessible childcare and school holiday programs for children with disability, as well as options to increase support for these services, either through the NDIS or an outside medium such as reform to the childcare subsidy.
  5. Carer identification, recognition, support and referral be a formalised part of the NDIA’s operational processes and procedures, to ensure clarity in capacity and coverage of individual government programs. This is recommended to include increased use of Carer Impact Statements during application and planning processes, along with increased transparent data, modelling and forecasting in public documents.
  6. Formalised education on carers, relevant legislation and carer support services be incorporated and/or improved within NDIA training programs. This is recommended to be undertaken in consultation with Carers Associations and carers.
  7. New and reformed data collection processes and reporting mechanisms be adopted, to better capture information about carers, separate to that of participants in the NDIS. This is recommended to be undertaken in consultation with Carers Associations and carers.
  8. NDIA investment in initiatives to combat thin markets, workforce challenges and shortfalls in service provision such as in respite services.

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA 13

Conclusion

Should the Parliamentary Joint Standing Committee on the National Disability Insurance Scheme require any further information regarding the comments included within this submission, or assistance from the perspective of WA carers, Carers WA would be delighted to assist.

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA 14

Appendix 1: Complex Case Studies

Case Study 1 – Mary and Tony

Mary’s* son Tony* has complex care needs and requires 24-hour support in his own home. There was a breakdown in communication between the support workers and the coordinator, and Tony and the coordinator. This resulted in the support workers going to Mary to intervene and the coordinator not going to Tony’s house to monitor the workers. Due to this lack of oversight, the quality of care, support and hygiene in the house declined significantly. There was also not a clear and consistent roster of workers, which was highly stressful for Tony, and no clear person for Mary to contact or know who was on duty. In addition, support workers would leave and not be replaced until there were only four out of the original ten workers still working. This resulted in Mary having to do 17 (24 hour) shifts at her son’s house over a two-month period.

Mary filed several formal complaints over a six-month period to the service provider’s senior management and the NDIS Quality and Safeguards Commission, with no improvements seen in the service over this time. The service provider then gave 30 days’ notice of their intent to cease service.

Mary worked with Tony’s support coordinator, but had great difficulty in trying to find a new service provider in this time frame which had the capacity to manage a person with complex care needs of disability, mental health and health conditions. They approached seven different providers, all of which had an intake wait time ranging from two to four weeks. Tony’s NDIS plan also underwent a scheduled review during this time, meaning he no longer met the criteria for Independent Living Options (ILO) funding and instead needed Supported Independent Living (SIL) funding. There was also an accompanying long wait for his SIL plan to be approved, meaning Mary had to share an outdated plan with potential providers even though Tony no longer met the criteria in the plan.

Nearly at the end of the 30-day notice period given, while a suitable service provider was identified, their intake would take 12 weeks to transition support. Further, as Tony has significant challenging behaviour and history of critical issues, the new provider wanted to wait until an updated behaviour support plan was in place. While Mary found the new provider to be very thorough and understood the length of time required to get support staff in place and properly trained to support Tony, the old service provider was adamant that they would not continue past the date given for ceasing services. This would mean that Mary would have to go back to providing Tony with 24-hour support for the twelve weeks, a prospect which was a huge stressor in her life and would have significant impact on her ability to work.

After going back and forth to the NDIS general number and NDIS Quality and Safeguards Commission several times for advice and support, Mary engaged advocates for herself and Tony.

The result of the long-drawn out dispute was that the original service provider was found to have a duty of care to continue to provide Tony with support until the behaviour support plan was completed and support workers from the new service provider trained to support Tony.

As a result over the changeover time the original service provider also improved communication regarding rostering, and stopped being reliant on Mary as a fall-back unpaid support worker.

Case studies are deidentified for confidentiality.

The term ‘review’ has been used when referring to the complex case studies in Appendix 1, as these occurred prior to the July 2022 amendments to clarify use of the terms ‘review’ and ‘reassessment’

13 (NDIS, 2022)

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA 16

Case Study 2 – Susan and Sean

Susan* is a carer for her son Sean*, who has very severe obstructive sleep apnea and a complex heart and spine condition. Susan had a prolonged and difficult experience which she termed ‘CPAP hell’ in getting an appropriate replacement funded for Sean’s Continuous Positive Air Pressure (CPAP) machine after it was damaged.

Sean requires a CPAP machine to support his sleep apnea overnight, but due to a lack of maintenance of the machine by his support workers and the workers not having the machine packed adequately while it was being transported, the machine was damaged beyond repair. This was following some previous issues with the provider not assisting with hygiene of the machine and timely replacement of consumables.

Sean had gotten this CPAP machine when he was assessed by a hospital sleep specialist, where he was diagnosed with severe sleep apnea and provided with a machine specially calibrated to his needs and funded through the former WA Disability Services Commission. Sean has funding through the NDIS for CPAP maintenance or consumables related to the machine. As Sean had NDIS funding, the state health department would not fund another machine.

When Susan requested that some of Sean’s NDIS CPAP repair and maintenance funding be used to purchase a replacement CPAP machine, the NDIA directed her to get an OT assessment. Susan was not able to find an OT with the skills needed for a CPAP assessment, and appealed this requirement, on the basis that a specialist sleep clinic had already assessed Sean. To back this up, Susan obtained a diagnostic report from the original hospital sleep clinic lab technician and a quote with the recommended CPAP machine, equipment and cleaning consumables. The urgency for an appropriately calibrated machine was further increased when, despite being able to use temporary CPAP machines through a loan machine and rental during this process, Sean’s support worker had to wake him up when he had cyanosis.

The pharmacy through which the rental CPAP machine was provided then was not able to claim for the cost of the rental machine, which Susan urgently contacted the NDIS Planner about. The NDIS Planner then worked with Susan to identify the most straightforward way to get a CPAP for Sean using his NDIS funding. Some funding was identified to be repurposed for the CPAP machine, for which a plan review was required, as well as making the funding Plan Managed. This meant a Plan Manager could pay for the item from Sean’s plan and Susan could then purchase the CPAP from any supplier, whether they were registered as a NDIS provider or not. Susan also got a letter from Sean’s cardiologist to further demonstrate the need for the new CPAP machine.

While this method was successful in getting the pharmacy paid for a new CPAP machine, the plan review process then took some time to be resolved, during which there was not funding to pay Sean’s plan manager. The revised plan which was sent through was also uncorrected and not resolved of several items, including the CPAP machine funding, which Susan had to further follow up to get corrected.

Case studies are deidentified for confidentiality.

The term ‘review’ has been used when referring to the complex case studies in Appendix 1, as these occurred prior to the July 2022 amendments to clarify use of the terms ‘review’ and ‘reassessment’$^{\text{14}}$.

$^{\text{14}}$(NDIS, 2022)

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA 18

Case Study 3: Rita and David

Rita* is a carer for her son David* and has self-managed his NDIS funding for David since he first started receiving it in 2020. She describes her experiences prior to, during and after going through the NDIS application process.

Prior to receiving NDIS funding, David had been receiving limited support through an agency, amounting to a few hours of support per week. The agency would send whoever was available to provide David with community support, which changed constantly. The support workers would also sometimes come late, not at all and one time they even came 24 hours early. Communication within and with the agency was not great and it was not a nice experience for Rita or David.

As the NDIS was new to WA and not in all areas, it took a while for it to become available for David. Once it was available, David’s social worker assisted with his application for the NDIS. In the build up to getting the Planning Meeting, Rita described how nerve wracking it was for her, as a lot was riding on getting the funding. She felt an overwhelming sense of responsibility, couldn’t sleep well for weeks and said it affected her mental health as she could not think of anything else. It was not an experience she said would ever like to go through again. Rita also found it very challenging to try to explain to someone she had never met the details of someone’s life with a mental illness, and how this affected their day-to-day life – particularly when David would often just say he was fine.

Due to the COVID-19 pandemic, the planning meeting was over the phone, during which Rita was supported by a representative from 360 Health + Community. The representative, despite being pregnant and about to go on maternity leave, came to Rita’s home to support her and spoke to the NDIS planner throughout the meeting. Rita felt very appreciative to have had the support person with her at the meeting. She also said she wondered how people cope without this support and if people miss out on funding because they cannot articulate their needs.

Rita found the Local Area Coordinator (LAC) to be very nice, patient and understanding. However, there were some questions she was not sure how to answer, including how she (as her son’s nominee) would like the plan to be managed. Rita ended up answering NDIA managed as it seemed to be the safest option. Following the meeting, Rita wanted more information on this and researched it further, including through online Facebook forums, until she felt confident to try to self-manage the plan.

David received a good level of NDIS funding, but the LAC which Rita had met with moved on from the role. Rita found this to be a shame as the LAC had done a good job, she had built up a relationship with him and he would always answer her questions. The new LAC sent Rita an email telling her who they were, then she did not hear from them again until David’s plan was up for renewal eight months later. David’s NDIS plan was renewed with the same level of funding, with only limited input required from the LAC. Rita described how relieved she was when the plan was renewed, and how nerve-wracking renewal time was, with no certainty on if funding was going to be cut or not.

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA

Rita has now been self-managing her son’s plan for more than two years, and says David is getting good community and home support. She described how as a result of her research and talking to others she has learnt that not all LACs are knowledgeable about the NDIS, with a lot of incorrect information being provided by LACs as a result. Rita said she has found for complex questions, it is best to phone NDIS direct, but found it quite stressful trying to get correct answers while caring for a loved one also.

Case studies are deidentified for confidentiality.

The term ‘review’ has been used when referring to the complex case studies in Appendix 1, as these occurred prior to the July 2022 amendments to clarify use of the terms ‘review’ and ‘reassessment’$^{\text{15}}$.

(NDIS, 2022)

References

Carers Australia. (2022). Submission to the Joint Standing Committee on the National Disability Insurance Scheme: Inquiry into the Capability and Culture of the NDIA. Canberra: Parliament of Australia.

Carers WA. (2020). Carers WA Submission to the Joint Standing Committee on the NDIS. Perth, Australia: Carers WA. Retrieved from https://www.carerswa.asn.au/wp- content/uploads/2020/09/200902_Joint-Standing-Committee-on-the-NDIS- submission-June-2020.pdf

Commonwealth of Australia. (2020). Proof Committee Hansard: Joint Standing Committee on the National Disability Insurance Scheme. Canberra, Australia: Commonwealth of Australia.

Government of Australia. (2010). Carer Recognition Act 2010. Canberra: Government of Australia. Retrieved from https://www.legislation.gov.au/Details/C2010A00123CORP

NDIS. (2022). 2022 NDIS legislation amendments - July update. Canberra: NDIS.

Carers WA Submission: Inquiry into the Capability and Culture of the NDIA 21