Summer Foundation submission to the Joint Standing Committee on the NDIS

28 February 2022

The Summer Foundation acknowledges and thanks all staff and storytellers for their contributions to this submission.

Contact: Julie-Anne Pho Policy Manager

             Summer Foundation Ltd. | ABN 90 117 719 516 | PO Box 208 Blackburn VIC 3130 |

                     www.summerfoundation.org.au

Executive Summary

The National Disability Insurance Scheme (NDIS, Scheme) represents generational reform to the way disability services are delivered. The Summer Foundation welcomes the opportunity to contribute to the Joint Standing Committee on the NDIS’ inquiry into current scheme implementation and forecasting. Sustainability of the NDIS is essential for the stability, dignity and quality of life of more than 449,900 NDIS Participants (participants).

The Summer Foundation is committed to ensuring younger people with disability are able to live in high quality age-appropriate housing that meets their needs. We do this by building the capacity of younger people, their families, supporters, government and the sector. Our mission is aligned with the Federal Government’s Younger People in Residential Aged Care (YPIRAC) Strateay, which seeks to ensure there are:

No people under the age of 65 entering residential aged care by 2022
No people under the age of 45 living in residential aged care by 2022
No people under the age of 65 living in residential aged care by 2025

There are currently 2,938 participants, under the age of 65, living in residential aged care (RAC). More than 50 young people continue to enter RAC each month, with most young people entering via hospital due to ineffective interfaces between the health and disability systems. Investments in keeping young people out of RAC will reduce long-term financial costs for the NDIS and increase the quality of life for young people with disability. This must include systems change to the NDIS and other disability and mainstream services, including health, housing and aged care.

Many participants are not receiving the level of funding required to provide the supports they need. Decisions made by the Agency that do not have participants at the centre are made contrary to participants’ needs and goals. Incorrect decisions result in harm to participants. NDIA decision making must be person-centred, to increase participants’ independence and reduce their need for supports over time.

NDIS resources can be better utilised to more effectively support participants to have choice and control over their lives. Funds are currently being wasted, which not only harms participants but also hinders the long-term sustainability of the NDIS. Allocating resources to better support timely outcomes for younger people in, or at risk of entry into, RAC is the most effective way to ensure the ongoing sustainability of the Scheme.

1 Current as at 31 December 2021. See: NDIS Quarterly Report to disability ministers (31 December 2021)

This submission focuses on the terms of reference (TOR) most relevant to the cohort we serve i.e. young people under 65 who are currently residing in, or who are at risk of being admitted to RAC:

TOR B: The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Federal Governments

TOR C: The reasons for variations in plan funding between NDIS participants with similar needs

TOR F: The measures intended to ensure the financial sustainability of the NDIS

TOR G: The ongoing measures to reform the Scheme

TOR H: Other related matters

The Summer Foundation is confident that the recommendations in this submission will enable the National Disability Insurance Agency (NDIA, Agency) to continue to uphold its obligations under the National Disability Insurance Scheme Act 2013 (Cth) into the future, so that people with disability can live their lives with dignity and confidence.

Recommendation 1: The NDIA must make timely and accurate decisions on the level of Specialist Disability Accommodation (SDA) funding and housing related supports required for NDIS participants, matching Aged Care Assessment Team (ACAT) timelines of referral to RAC.

Recommendation 2: The NDIA must ensure YPIRAC planners and support coordinators are skilled and able to effectively build the capacity of YPIRAC.

Recommendation 3: The NDIA must provide clearer definitions around eligibility for different types of support options available through the Scheme.

Recommendation 4: The NDIA and State and Territory Governments must ensure effective integration of systems to enable people with disability to navigate health and disability service systems.

Recommendation 5: The NDIA must expand the Health Liaison Officer (HLO) role to ensure the needs of participants are addressed within the hospital setting.

Recommendation 6: The NDIA must increase the number of HLOs to provide adequate coverage across all hospitals.

Recommendation 7: Discharge teams, encompassing support coordinators, hospital discharge planners and allied health professionals, must increase their understanding of participant support needs and address barriers to housing and support.

Recommendation 8: The NDIS Quality and Safeguards Commission must enact legislative changes to the NDIS Rules in line with the Tune Review.

Recommendation 9: The NDIA Home and Living Panel must make timely and accurate decisions regarding SDA which meets participant needs and goals.

Recommendation 10: The NDIA needs to streamline the processing of Supported Independent Living (SIL) applications for participants moving into new housing properties, enabling SDA, SIL and assistive technology decisions to be connected thereby avoiding unnecessary delays.

Recommendation 11: The NDIA must implement a fit-for-purpose Customer Relationship Management system (CRM) that is representative of the core needs of participants to guide the market, support thin markets and highlight gaps or pressure in market channels.

Recommendation 12: The NDIA must undertake a demand activation campaign to support awareness among SDA-eligible participants.

Recommendation 13: The NDIA needs to provide and invest in proactive accessible information around the rights and supports available to participants, and develop the capability and systems needed to routinely release detailed and timely demand data.

Recommendation 14: The NDIA must allow flexibility in reasonable and necessary funding, in line with disability needs.

Recommendation 15: The NDIA should use the $18.9 million YPIRAC funding to better support timely outcomes for younger people in, or at risk of entry into, RAC.

Table of contents

Introduction 6

Terms of reference 6

TOR B: The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Federal Governments 6

    Interface between the NDIS and Federal systems                            6

    NDIS and aged care interfaces                                       6

    Interface between the NDIS and State and Territory Governments              11

     Development of guidelines to tighten interpretation of system interfaces      11

    NDIS and health interface                                          12

      Health and housing interface                                        13

TOR C: The reasons for variations in plan funding between NDIS participants with similar needs: 18

 TOR C i: The drivers of inequity between NDIS participants living
    in different parts of Australia                                            18

 TOR C ii. Inconsistent decision-making by the NDIA                         20

      Legal cost of inconsistent decisions                                   20

TOR F: The measures intended to ensure the financial sustainability of the NDIS (e.g. governance, oversight and administrative measures), including: 23

 TOR F iii. the way data, modelling, and forecasting is presented
    in public documents about the NDIS                                     23

 TOR F iv. measures to ensure transparency of data and information about the NDIS
                                                                    24

TOR G: The ongoing measures to reform the Scheme including: 26

 TOR G ii. planning policy for personalised budgets and plan flexibility           26

       Participant perspective on NDIS cost effectiveness                       27

TOR H: Other related matters 28

 New NDIA funding to support YPIRAC                                    28

      Securing alternative housing for YPIRAC                               28

Conclusion 31

About the Summer Foundation 31

Appendix A 32

Introduction

The ongoing sustainability of the National Disability Insurance Scheme (NDIS, Scheme) is vital for millions of Australians. People with disability, their families, close others, supporters and service providers all rely upon an efficiently working NDIS which is predicated upon value for money and free market provision of services.

Providing better outcomes for NDIS Participants (participants) is crucial to the sustainability of the NDIS. System reform and measures to build the capacity of participants and service providers are required to transition younger people out of residential aged care (RAC) and ensure timely and effective housing and support options.

The Summer Foundation has addressed the terms of reference (TOR) that require urgent consideration and targeted action in order to establish the pathways that enable young people with disability to live an ordinary life in the community.

Terms of reference

TOR B: The interfaces of NDIS service provision with

other non-NDIS services provided by the States, Territories and the Federal Governments

Interface between the NDIS and Federal systems

The Federal Government is responsible for funding the NDIS (in partnership with the State and Territory Governments) and aged care. It also contributes significantly to health and hospitals, which are delivered by State and Territory Governments. The interface between these systems is fragile and challenging to navigate. This results in participants being admitted to RAC due to National Disability Insurance Agency (NDIA, Agency) delays in determining eligibility for housing and associated supports. Whilst the entry of younger people to RAC, and the cost of long stay hospital patients are not directly or solely attributed to the NDIS, the stifled systems add additional pressure to both federal and state budgets, moreover taxpayers.

NDIS and aged care interfaces

Currently, the NDIS and aged care systems work against young people with disability by providing easy entry to RAC, despite being contrary to participants’ needs and goals. While the NDIS should provide timely access to housing and support options to participants, younger people end up seeking access to RAC after being told, often by the NDIA, that they are not eligible for funding to access Specialist Disability Accommodation (SDA), yet no other housing is suitable for their needs.

Hospitals are the largest referrer to RAC; however, to progress through the Aged Care Assessment process, the NDIA is required to assess other options available. More often than

not, the NDIA is stating that no housing is available, despite vacancies in SDA stock and other age-appropriate, accessible options. This is often the result of inaccurate or lack of determination of SDA funding.

Once a participant enters RAC it becomes increasingly difficult for them to leave. Their quality of life declines, along with their functionality and confidence, after admission to RAC. This decline often requires additional funding for capacity building to redevelop skills, if the participant is able to exit RAC later in life.

The Federal Government’s 2022 Young People in Residential Aged Care (YPIRAC) targets will only be achieved through the prevention of RAC admissions for younger people with high and complex disability. The NDIA needs to match Aged Care Assessment Team (ACAT) decision-making timeframes, and take no more than:

3 days to allocate funding for people with disability stuck in hospital and younger people at risk of entry to RAC, at the required level of SDA.
```
*Note: 3 days for the NDIA to make a determination, following receipt of all relevant
evidence.*
```
10 days to allocate funding for housing and supports to other NDIS participants with a housing goal (i.e. participants do not have to go through a 12-month Administrative Appeals Tribunal (AAT) process to get a fair SDA decision).
```
*Note: 10 days for the NDIA to make a determination, following receipt of all
relevant evidence.*
```

While the NDIA fails to match these timelines, participants will continue to be admitted to RAC. To enable decisions to be made, the NDIA must provide clear guidance to participants, allied health professionals and support coordinators on the evidence they require to meet a determination for SDA funding and housing related supports.

In the last financial year (2020-21), 94% of ‘exits’ from RAC occurred where the young person had either died or aged out (i.e. turned 65 years old).2 Only 6% actually left RAC and moved into alternative housing, which includes hospital and other group residential settings. Very few moved into SDA or other appropriate housing. This is not success, nor is it an adequate response to supporting younger people in aged care.

2 Community Affairs Legislation Committee (Senate - Thursday 17 February 2022)

Recommendation 1: The NDIA must make timely and accurate decisions on the level of SDA funding and housing related supports required for NDIS participants, matching ACAT timelines of referral to RAC.

SDA funding

The NDIA is underspending much of the $700 million committed to SDA payments in the mistaken belief that this will contribute to making the NDIS sustainable. However, the net cost to the federal budget of timely approval of SDA payments would be $306 million in 2025 and $117 million in 2031, which is offset by the current underspend (69% of $700 million) on SDA payments.3

Over time, there will be a continued growth in savings due to a reduction in support needs and therefore costs, which comes as a result of built environments that incorporate technology and are designed to maximise independence and enable the efficient provision of paid support.

Barriers to leaving RAC

The NDIA implemented YPIRAC planners to support younger people to explore available housing pathways. However, most often younger people are only asked if they want to move and are not adequately supported to understand the different options that are available to them. Planners need to ensure that younger people understand the impact their housing pathway will have on their lives and the lives of their loved ones, and the support which they will receive to live independently or with others. Building the capacity of younger people around appropriate housing options is critical.

Only around 30% of participants aged under 65 who are living permanently in RAC have ‘leaving RAC’ as a goal. 4 This is likely due to:

Many participants being institutionalised after living for many years in RAC and being told that it is the only safe, appropriate place for a person with disability to live
A lack of information about housing and support options.

Barriers for participants looking to leave RAC are:

Delayed or inappropriate funding included in their NDIS plan. In many cases, it is taking the NDIA 6-12 months to make an SDA determination and a further 6 months to allocate Supported Independent Living (SIL) funding
Inadequate SDA determination, forcing a participant to live with other people with disability despite their goal to live with family or independently
Potential lack of appropriate accommodation in the location they want to live. No demand data is provided by the NDIA - current data indicates where participants currently live, not where they would like to live.5

3 Summer Foundation’s Pre Budget Submission 2022. 4 Based on NDIA figures that as at 30 June 2021, of the 2,938 participants aged under 65 who were living permanently in RAC, only 886 of participants had clearly stated that leaving RAC was a goal. See NDIA SQ21-000180. 5 NDIA SQ21-000183, NDIA SQ21-000184.

When young people are admitted to RAC, they lose skills, confidence, independence and social connection. Many YPIRAC require capacity building, information, resources and support over an extended period of time to consider alternative housing and support options.

Supporting a young person to leave RAC requires a collaborative approach that includes the RAC provider, support coordinators, NDIS planners, family and other NDIS providers. Importantly, all younger people should be given the option to live in the community and be given information on home and living supports through the NDIS and mainstream/community services and housing. Sharing ideas of how other younger people consider their housing needs, planning for their life outside of aged care and living in the community can help a person ignite the possibility of living well in the community.

Effective planning and support coordination will enable participants to access the appropriate housing and supports from the outset, preventing the deterioration of skills and increasing independence and functionality. This will ensure NDIS funding is contributing to each participant living an ordinary life.

Recommendation 2: The NDIA must ensure YPIRAC planners and support coordinators are skilled and able to effectively build the capacity of YPIRAC.

a) YPIRAC planners must actively increase their engagement and capacity building of YPIRAC to explore housing and support options by providing adequate funding for exploration of housing and timely and accurate SDA and support determinations.

b) Increased funding of support and specialist support coordinators for all participants who are YPIRAC, or people with disability in hospital, to navigate housing and support options and facilitate the collection of evidence needed to enable SDA and support determinations.

c) Improved professional development options equip support coordinators and allied health professionals with the essential tools and strategies to work with participants who have complex housing and support needs. This is in line with the NDIS Practice Standards, which set out the rights of participants and the responsibilities of providers (including support coordinators and allied health professionals) that deliver supports and services to them.

Resources available

The Summer Foundation has developed a variety of tools to support young people and their families to build capacity around housing options. These include:

a) The Housing Hub, which advertises vacant accessible properties (including existing SDA, new SDA builds, and non-SDA supported accommodation) from a range of housing providers, and hosts a library of useful information about housing options and move planning.

b) A video series about moving out of a nursing home, which covers topics including challenges and barriers to moving, what supported a person’s move, coordinating daily support, and what life is like after transitioning out of RAC.

c) Postcards which have been distributed to YPIRAC and those at risk of admission to RAC. These postcards include QR codes that link to our supports, which depending on the younger person’s circumstances (e.g. if they already have an NDIS plan or not) guides the younger person through the stages they must go through to transition out of RAC.

YPIRAC planners must do more training and sustained advocacy to empower YPIRAC to consider their housing options and explore capacity building options. The Summer Foundation delivers the UpSkill program which builds the capacity of support coordinators and allied health professionals to support people with complex needs to achieve good outcomes and live well in the community. Training is available across many aspects of the NDIS, including supporting younger people out of aged care. An informed support coordinator, who understands the individual needs of the participants they work with, is essential to navigating the housing and support pathway.

“The main issue is relying upon the support coordinator, I think, heavily, heavily relying on them and that’s a good thing. It’s not a bad thing as long as they are good at their job.”

Andy*6 - Participant

“You need to get a good support coordinator. But it’s very important that you get along with your support coordinator, and she or he understands your needs and what you need for your plan. Because there’s no point getting a support coordinator … that doesn’t know who you are. Because it’s all about – all about supporting you as a person.”

Brent* - Participant

“We had heaps and heaps of reports … I engaged with a support coordinator and they got it over the line. Support coordinators are able to keep track of all the information and are able to speak confidently to the people at NDIS. I cannot tell you how important a support coordinator is to get a complex plan over the line.”

Joanna* – Family member

6 Asterisks indicate pseudonyms used to maintain contributor confidentiality.

Interface between the NDIS and State and Territory Governments

Participants often require access to a wide range of services, both within and outside the scope of the NDIS. There are imperfect interfaces between the NDIS and other mainstream systems. Increased cooperation and collaboration is required to ensure that people with disability have access to equitable outcomes.

The NDIS and State and Territory Governments have clear mandates at a high level, although these require interpretation to provide clarity for people with disability and their supporters. Responsibilities are often misunderstood where participants’ support needs intersect both the NDIS and mainstream service systems.

The lack of operational clarity about the lines of responsibility between the NDIS and mainstream service systems result in what the Tune Review calls “boundary issues and funding disputes, service gaps and confusion for NDIS participants, poor quality planning and inconsistent decisions about when a support is reasonable and necessary.”7 Confusion about which supports are funded by the NDIS, and which are provided by another mainstream service system (e.g. Health) often results in delays to access requests and support provision.

Development of guidelines to tighten interpretation of system interfaces

In November 2015, the Council of Australian Governments reviewed and agreed to the Applied Principles and Tables of Support (APTOS). This outlines the division of service roles and responsibilities between the NDIS and other service systems, including health, housing, aged care, and more. APTOS details high level principles about the delivery responsibilities of the NDIS and other service systems where there is interaction between 2, or more, systems in how they provide support to people with disability.

NDIS and Disability housing

Appropriate housing is a critical issue for many participants. The APTOS states that the NDIS is responsible for user costs of capital in some situations where a person requires an integrated housing and support model.8 Meanwhile, the provision of accessible and affordable accommodation options that meet the needs of people with disability is described under Housing and Community Infrastructure. This means that the NDIA is responsible for providing NDIS funding for SDA while the mainstream service systems within State and Territory Governments are responsible for providing accessible and affordable housing to participants who are not eligible for SDA, which encompasses 94% of participants.

The APTOS, in partnership with the SDA Rules,9 makes clear that the 6% of participants who receive an SDA determination are those who still need a very high level of in-home support. For the 94% of participants who are not eligible for and do not need SDA, State and Territory Governments and mainstream/community services need to ensure access to accessible, affordable and appropriate housing, including social housing.

7 Tune Review Report, [6,26]. 8 Applied Principles and Tables of Support, 18-19. 9 National Disability Insurance Scheme (Specialist Disability Accommodation) Rules 2020 (Cth).

Recommendation 3: The NDIA must provide clearer definitions around eligibility for different types of support options available through the Scheme.

It is the Agency’s responsibility to develop accessible information around Scheme access options that meet the varied needs of participants. Understanding where to access support is crucial to ensuring participants have timely access to appropriate housing options.

“There’s a lot of information that goes out. People give up because it seems all too hard.”

Pippa* - Participant

NDIS and health interface

Participants, as do many Australians, experience challenges navigating the different systems which they depend upon to live their lives. As at November 2021, there were 1,100 participants stuck in hospitals across Australia, awaiting NDIS decisions, suitable housing, access to NDIS funding or home modifications.

The health and NDIS systems operate completely independently with different timelines. For example, when a young person is admitted into hospital with a severe brain injury, as soon as they are medically stable and have completed inpatient rehabilitation, there is pressure to move them out of hospital. However, the NDIA typically takes months to provide adequate funding for housing and supports. It takes additional time for participants to navigate the disability sector and access relevant mainstream services, such as accessible housing.

Case Study: Tera*

In December 2019, Tera had a major brain haemorrhage when having a stent put into her heart. Three days later she had a heart attack, likely due to clotting around the new stent. Tera was unable to move a significant amount of her body and is bed-bound except when she is hoisted into a wheelchair. She had movement in her right upper limb, which she could use to hold and manipulate objects and to indicate yes/no answers to questions.

After being in hospital for 9 months without any further haemorrhage or heart attack, she told everyone “All I want is to go back home.”

Tera’s strong wish was to go home to be with her family, with the necessary medical, allied health and nursing support. She had an interim plan in June 2020 providing funding for a support coordinator, a plan manager, an occupational therapist and quotes for home modifications. While the aim was to enable the gathering together of all needed information for a complete plan, Tera and Edger had to push for months to get proper reports that the NDIS would accept.

Tera and her partner Edger* had been trying since early August 2020 to gain approval from the NDIA for a variation to Tera’s plan providing for all the support she will need. Tera and Edgar felt that the planner and the NDIA were tardy, unresponsive and not transparent.

They had provided all finalised reports and hospital documents, a budget request with further quotes and the support coordinator’s own report to the NDIA planner. However, she was at significant risk of being discharged from hospital into aged care.

After 1 year and a longer process than Tera and Edger should have experienced, Tera was discharged home and is being successfully supported by a team of nurses on rosters, support workers, night-time support and her partner Edger.

Recommendation 4: The NDIA and State and Territory Governments must ensure effective integration of systems to enable people with disability to navigate health and disability service systems.

Health and housing interface

Lack of disability housing is not the main barrier to hospital discharge. However, many people with high and complex needs struggle to return home or to find appropriate housing that addresses their needs. The Housing Hub has approximately 2,500 vacant SDA places currently listed. Despite these vacancies, the NDIA is referring younger people to RAC, advising that there are no suitable housing options available.

The effective and timely transition of people with disability and complex needs from hospital to the community has the potential for increased efficiencies and cost benefits to both hospitals and the NDIS. Living in a hospital costs $2,150 per patient per day, this is more than twice the cost of supporting people with disability to live in the community.

Timely access to funding for housing and support for people with disability and complex needs who are stuck in hospital has the potential to save the Federal Government, State Governments and Australian taxpayers more than $424 million per annum.10

Temporary housing options for participants in hospital

Participants in hospital should be supported in Medium Term Accommodation (MTA) while they are waiting to move into long-term housing such as SDA. MTA funding is included in the Core Budget of the NDIS plan, meaning that participants have flexible use of funding and may immediately use that funding for MTA housing. However, at this time, NDIA is only allowing participants who have a long term housing option secured to use MTA. This would work only when the NDIA is able to make timely and accurate SDA and support determinations. Currently, due to extended wait times and inaccuracy of SDA and support determinations, the MTA policy prevents participants accessing it as a solution to prevent entry into RAC or enable safe discharge from hospital.

For further information on the Summer Foundation’s recommendations for delivering positive outcomes for participants requiring MTA with a comparison of the current state of MTA and the desired future state, please see our Policy Position Statement on Medium Term Accommodation Eligibility, Funding and Quality to Meet the Needs of NDIS Participants.

Timeframes for NDIA decisions

As referenced above, the NDIA needs to match the aged care sector to avoid the risk of younger people with disability being admitted into RAC, either temporarily or permanently, while they are waiting on NDIA decisions on housing and associated supports. Decision-making by the NDIA should be at 3 days in urgent circumstances and 10 days for people at risk of entry into RAC or being discharged from hospital.

There is a collective need for the NDIA and State and Territory Governments to work together to streamline processes to ensure timely and effective discharge planning for participants and prevent new admissions of young people to RAC. This should involve:

a) Funding specialist services to assist hospital staff to identify suitable disability housing.

b) Capacity building for hospital discharge planners and NDIS-funded support coordinators.

c) New flags in hospital systems for the early identification of new NDIS participants and patients with disability who need intensive discharge planning.

d) Developing and piloting an evidence based approach to streamline the allocation of funding for new participants leaving inpatient rehabilitation.

10 Summer Foundation Pre Budget submission 2022.

Discharge planning for people with disability

The Health Liaison Officer (HLO) is a role specifically created by the NDIS as an approach to bridge the gap between the NDIS and state/territory health. The purpose of this role is to ‘work with hospital and health workers to improve communication between health systems and the NDIS, with the goal of supporting more timely discharge of potential or existing participants from hospital settings.’11 HLOs play an integral role in essential service delivery within the hospital.

The scope of HLOs

Broadening the scope of HLOs is crucial to ensuring effective discharge planning occurs as early as possible after a young person with disability is admitted to hospital. HLOs are contacted when a participant is ready for discharge, or for escalating cases around complex disabilities and connecting health workers with the NDIS. This means that people with disability requiring the assistance of HLOs may find themselves waiting for months, resulting in increased costs to the health system and a fast decline in their functionality and confidence. HLOs should be authorised to determine NDIS eligibility, and advise on and draw up Access Request Forms (ARFs) and plans. This will in turn ensure that required funding for the participant’s ongoing support needs is available ahead of discharge.

Recommendation 5: The NDIA must expand the HLO role to ensure the needs of participants are addressed within the hospital setting.

a) The NDIA must give HLOs delegation to make access determinations for the NDIS.

b) The NDIA must authorise HLOs to draw up and advise on ARFs. ARFs submitted through HLOs are to be given top priority from the Access Team.

This will achieve a coordinated health and NDIS interface where NDIS access is streamlined for patients in acute and sub-acute settings with complex needs. People with disability and complex health care needs can achieve more efficient discharge and remain in the community, thereby reducing long-term costs to the NDIS.

Number of HLOs

There is a national shortage of HLOs with only 24 working across Australia. Because of this shortage, they have minimal capacity to work directly with participants. HLOs do not have a strong presence in many hospitals and regions, with some hospitals reporting that they are not able to meaningfully engage with HLOs. This is especially true in regional areas that may have limited access to key personnel, due to arrangements such as sharing a single HLO with a wider metropolitan centre. Where HLOs are spread thinly, there is greater difficulty in escalating a person with disability’s case and resolving discharge delays that are preventing them from returning home.12

11 National Disability Insurance Agency, Health Liaison Officer Factsheet for Government (December 2019) 12 Summer Foundation’s Hospital Discharge of NDIS Participants with High and Complex Needs Position Statement

“There was [an HLO] whose job it is to get to make contact with the NDIA. I never had a phone call from that person, I don’t think [our support coordinator] ever had a phone call from that person.”

Edger* - Tera’s partner

“We have a HLO who has been assigned to us; however, she works across 3 hospitals. She does 1 day a week. Unfortunately, we have not been able to utilise her as an effective resource to assist us with decreasing length of stay and discharging clients from hospital. We have met with other hospitals who report their HLOs are extremely helpful in navigating the system and expediating discharge.”

Eliza* – Clinician

The NDIA must ensure that there is strong HLO presence in every single hospital, ensuring no gaps or inequities between different hospitals and regions. The number of HLOs must be increased to allow for a continuous and effective presence in hospitals. This will allow for rapid response and escalation of participant needs, unaffected by the participant’s location.

Recommendation 6: The NDIA must increase the number of HLOs to provide adequate coverage across all hospitals.

A further investment in HLOs of $5 million is needed, to allow for 48 additional HLOs across Australia.13 Increasing the number of HLOs to 72 would provide the additional capacity required to better support people with disability to be effectively discharged from hospital. This will also address issues of inequitable representation in regional areas, reduce the pressure on each individual HLO and the region they cover, reduce delays in hospital discharge and disability services and ensure better outcomes for participants. Regional areas where there are significantly fewer HLOs should be prioritised.

Capacity building for discharge teams

Many allied health professionals lack the time and opportunity to develop working knowledge of the technical aspects of the NDIS, the NDIS language, or the risks associated with admissions to RAC for younger people with disability. These professionals must be able to access specialist training to build their capacity to work across the different systems. They will be unable to address the barriers to housing and support if they do not understand participant support needs. This puts participants at greater risk of hospital long stays, admission into RAC and deterioration of skills and functionality.

13 Based on calculations that the HLO is an APS6 level role with an approximate $90,000 base salary with 20% costs (including superannuation)

Case Study: Alex*

Alex bounced between hospitals for almost 6 months after a bladder infection.

“I eventually ended up in [hospital rehab] over a period of months before I finally got notice that I could leave – the problem was they didn’t know where to put me, I could no longer walk and was in a wheelchair.”

Alex was unable to return to his previous apartment due to step access.

“While in [hospital], a social worker said to contact NDIS and submitted an application for me, which made a huge difference to my life and I didn’t really know what was happening at that time.”

When it came to looking at options, “Everyone drew a blank, it wasn’t looking very good. Finally they said ‘move you into a halfway house - a 9 story building for people over 65, having dinner with 80 or 90 year olds - you then have 13 weeks to decide where you want to live.’”

After moving into this temporary housing, a social worker presented Alex with an option, however, it was “more like a residential aged care place”. It was in an area Alex knew well though, so he took it. After a year, his Support Coordinator told him, “You do have options and you might like to look at a website [to see what] you might be able to move into now you’re in the NDIS.”

Alex now lives in SDA.

Recommendation 7: Discharge teams, encompassing support coordinators, hospital discharge planners and allied health professionals, must increase their understanding of participant support needs and address barriers to housing and support.

The Summer Foundation offers a variety of resources, which have been proven to build the capacity of cross-sector discharge teams.

a) The Housing Brokerage Service (HBS)14 assists the discharge of people with disability from hospital to housing that aligns with their housing needs and preferences through an innovative housing search. Established in April 2020 in response to COVID-19, the HBS team uses a model of secondary consultancy to support and build the capacity of key professionals working alongside people with disability who are stuck in hospital and require suitable housing. In its first 5 months of operation, the HBS worked with 62 people across Australia to stop them being forced into RAC when they leave hospital. Housing pathways included moving to an interim serviced apartment and then SDA housing; to long-term non-SDA housing with supports; and to private rental with supports.

14 Housing Brokerage Service update

b) The Collaborative Discharge Approach planning resource describes how health clinicians, support coordinators, community and housing providers can work collaboratively with the NDIS. For example, exploring the opportunity for a person to return home may also require providers to explore an interim housing option at the same time. This would occur if the person’s home or alternative housing option was not ready in the immediate term.

c) The Leaving Hospital Well project delivers training programs and offers a Community of Practice to health professionals specifically in the discharge space to build their capacity to understand, navigate and develop best practice collaborative discharge under the NDIS. A Leaving Hospital Well pre and post training survey conducted in 2020 found a 71% increase in the capacity of health workers to interface with the Scheme.15

d) UpSkill offers specialised training sessions, resources, and a Community of Practice for allied health professionals, and support coordinators, to access information and develop best practice approaches.

“Having staff trained in NDIS - it would probably take a little while, but when I consider I was in hospital for a month simply because they didn’t know where to put me - it is a reasonable amount of time.”

Alex* – Participant

TOR C: The reasons for variations in plan funding

between NDIS participants with similar needs:

TOR C i: The drivers of inequity between NDIS participants living

in different parts of Australia

Participants across the country experience significantly different outcomes based upon availability of supports and services. Participants in rural and remote areas often experience inequitable access to supports and services when compared to participants in big cities. There is a relative lack of Local Area Coordinators (LACs), advocates, support coordinators and allied health professionals in rural and remote areas. This means that participants are less able to engage with the NDIA and are inadequately supported to achieve their goals. These inequities make the NDIS less effective for them and results in reduced support and misused or wasted NDIS resources.

Where there are fewer support options, participants are at greater risk of being exploited and neglected. Thin markets provide participants with little to no choice in the providers of their supports which results in conflicts of interest as providers are delivering multiple services. Housing and supports are separate services and should be delivered as such, in line with the NDIS Practice Standards.

15 Leaving Hospital Well Project

Yet the NDIS Quality and Safeguards Commission does not mandate this separation, leaving participants at risk. There should be separation of delivery of supports across providers, or at minimum clear procedures which ensure separation of service provision within organisations, where other providers are not suitable to deliver services or are not operating in the location.

“It is important to make sure the influencers are not benefiting from the decisions that they are influencing the client/decision maker to make. Should be based purely on what is best for the client, taking into account their circumstances and the situation they are in. I felt very angry when this [i.e. when people influence you and don’t have your best interests in mind] happened – I felt like people could ‘use and abuse me’.”

Rachel* – Participant

“How will the NDIA transition away from how things are done now when some providers are making so much money? E.g. providers delivering all types of support – [Support coordination], SIL, etc. – how is choice and control achieved with these providers? People don’t feel like they have the power to go elsewhere. These providers have too much control.”

Megan* – Participant

Recommendation 8: The NDIS Quality and Safeguards Commission must enact legislative changes to the NDIS Rules16 in line with the Tune Review.

Changes to the NDIS Rules are required to mitigate the risk of conflicts of interest and protect participants from the risk of abuse and neglect. Legislation should require providers to:

a) Give clear and explicit declarations of conflict of interest to participants when providing multiple supports and services or managing plans. Explanations must be provided to each participant in their preferred language and mode of communication.

b) Avoid referrals to “preferred partners” that funnel participants to particular providers rather than having participants choose their preferred provider.

16 National Disability Insurance Scheme (Code of Conduct) Rules 2018 (Cth).

TOR C ii. Inconsistent decision-making by the NDIA

In what appears to be a move to control SIL costs, the NDIA is restricting the eligibility and entitlements of participants looking to move into SDA which is designed to foster independence and deliver improved tenant outcomes at equivalent or lower support costs.17 Many participants are not being funded for their required SDA design category, building type or number of residents.

Cost cutting in the interest of the long term sustainability of the NDIS has meant that participants are worse off than they were previously. Participants who were once eligible for the NDIS find that they no longer are, or they are experiencing cuts to their plan funding. More participants are appealing NDIA decisions, resulting in significantly increased costs for the Scheme.

Legal cost of inconsistent decisions

SDA funding determinations are not aligning with participants’ eligibility or the evidence presented. This forces participants to seek reviews of these determinations.

A participant may request that the NDIA conduct a review of their plan at any time in line with section 48 (s48) of the National Disability Insurance Act 2013 (Cth). 18 This generally occurs when a participant’s circumstances have changed and their current plan no longer meets their needs.

Where a participant believes that a decision the NDIS has made about them is wrong, they may apply for an internal review in line with section 100 (s100) of the NDIS Act. If participants believe that the outcome of this internal review still does not match their needs shown in their evidence, they may appeal to the AAT. So far this year, 13.4% of s100 reviews have proceeded to AAT appeal; this is a 2% increase from the figures obtained in October 2021.19

From 1 April to 30 June 2021, the NDIS Home and Living Panel decided that 1,137 participants were eligible for SDA but only 123 (10.8%) of these were funded to live alone. This is a significant drop from the previous period, between 1 July and 30 September 2020, during which time the Home and Living Panel funded sole occupancy SDA for 205 of the 802 (25.5%) participants eligible for SDA.20 It is also at odds with Housing Hub data gathered between 16 May and 16 November 2021, which shows that of the 646 participants with Housing Hub profiles, 295 (45.6%) searched for SDAs where they could live alone. A further 143 (20.7%) searched for SDA dwellings where they could live with family.21

17 Summer Foundation interim report on Moving into new housing designed for people with disability: Evaluation of tenant outcomes 18 National Disability Insurance Act 2013 (Cth) 19 Community Affairs Legislation Committee (Senate - Thursday 17 February 2022) 20 NDIA SQ21-000167 21 Housing Seeker Snapshot Report (December 2021)

Data suggests that the Home and Living Panel is increasingly rejecting requests for single occupancy SDA and this has resulted in increasing appeals regarding SDA decisions. This means that many participants have already gone through the process of s100 review, the NDIA still has not made the correct decision, and this has forced participants to appeal to the AAT. These reviews and appeals are costly, time-consuming and stressful for all involved and further extend an already lengthy process. Participants are left in limbo from the time the NDIA makes an incorrect decision, until the AAT finally corrects this decision.

The AAT recently rejected the NDIA’s argument that funding a participant to live in a 2-occupant SDA represents value for money and as such, a single occupancy SDA was not reasonable and necessary.22 The AAT determined that a 2-occupant dwelling would not achieve the same outcome at a substantially lower cost for several reasons, including:

a) The participant’s preference to live alone.

b) The participant’s concerns regarding their capacity to remain safe if living with others.

c) Living alone is appropriate for the participant’s current life stage.

d) Living alone will increase the participant’s independence and reduce the participant’s need for other kinds of supports.

The AAT has emphasised the importance of suitable SDA in achieving participants’ goals. Where participants have a preference to live in a single occupancy SDA and this aligns with their needs, they should be given a single occupancy SDA. Shared dwellings do not necessarily represent a cost saving to the NDIS and in some instances they are likely to cause harm to the participant.

The NDIA spent $17.3 million on external legal fees in the 2020-2021 financial year.23 Approximately 2000 appeals were heard during this time, at a cost of around $8000 per case. This represents a 30% increase of costs for the Agency from the previous financial year. The NDIA spent $19.1 million in the following 6 months and is on track to doubling its external legal fees costs in the 2021-2022 financial year. The NDIA’s AAT branch also employs 23 full time equivalent (FTE) legal staff and 32 FTE case management staff to support the Agency in defending appeals, at further cost to the Agency.

To defend this spending, the Agency explained that it pays market rates for lawyers and only a fraction of all participants appeal NDIS-related decisions to the AAT. 24 However, this figure is indefensible because many appeals cost more in legal fees and staffing than the funding decisions that are being appealed (e.g. appeals relating to a low cost piece of assistive technology), 97% of appeals are being settled prior to AAT determination and many of the remaining 3% are overturned by the AAT in the participant’s favour.

This suggests that the NDIA has been wasting millions of dollars to defend incorrect decisions, even in cases where the participant’s requested supports are at a low cost to the Scheme.

22 See Boicovitis and National Disability Insurance Agency [2022] AATA 204 (9 February 2022). 23 Community Affairs Legislation Committee (Senate - Thursday 17 February 2022) 24 Clun, R (17 February 2022) ‘National Disability Insurance Agency spends millions on external legal costs’ The Age <www.theage.com.au/politics/federal/national-disability-insurance-agency-spends-millions-on-external-legal-costs-20 220216-p59wxs.html>

It is unacceptable that $19.1 million is the current cost of making correct decisions. Much of the cost of AAT legal representation would be better spent ensuring that the NDIA is working with participants and decision supporters to understand each individual participant’s needs and goals and ensure the right decision is made at first instance. The focus should not be on purported financial cost savings to the NDIS. Participants must receive timely access to housing that aligns with their preferences and goals, and which helps them achieve independence.

Decisions that are person-centred and in line with what participants say they want and need are more likely to be seen as ‘correct’ in the first instance. Participants who believe they are at the centre of their NDIS plan do not have to seek an s100 review or appeal to the AAT. This will result in significant cost savings to the NDIS because there will be no need for the NDIA to pay for legal representation. Participants will be funded for supports that enable independence and functionality, and they will be less reliant on personal care supports from the NDIS. This will bring about further cost savings over time.

Recommendation 9: The NDIA Home and Living Panel must make timely and accurate decisions regarding SDA which meets participant needs and goals.

Even where a participant’s SDA funding meets their needs and goals, they often have to go through a secondary process to request housing related supports, such as SIL, to enable them to move into an SDA. Slow administrative and decision-making processes by the NDIA puts participants at risk of being stuck in hospital or RAC. Coordinated decision making must be implemented by the Agency to make determinations about all housing and housing-related supports together. Despite a new approach by the NDIA to bring together decisions into the Home and Living Panel, this is not the experience on the ground and the overly complex NDIA process does not encourage or inform participants or professionals to submit applications in this way.

“The process with all the assessments. It takes so long … This last 12 months it’s been terrible waiting for SDA. I can’t find the assistive technology equipment that works for me … My life is like a horizontal holding pattern until I get into SDA. Your mental health just takes a hit, going round and round trying to find solutions. Trying to fit in OT appointments, Support Coordinator appointments.”

Pippa* – Participant

Recommendation 10: The NDIA needs to streamline the processing of SIL applications for participants moving into new housing properties, enabling SDA, SIL and assistive technology decisions to be connected thereby avoiding unnecessary delays.

TOR F: The measures intended to ensure the financial

sustainability of the NDIS (e.g. governance, oversight and administrative measures), including:

TOR F iii. the way data, modelling, and forecasting is presented

in public documents about the NDIS

Current data about YPIRAC, participants in hospital, participants with SDA and other cohorts is very limited. Data provided in NDIS Quarterly Reports to disability ministers and GEN Aged Care is minimal and does not enable an effective market response to the needs of participants. The NDIA is designing and building a new fit-for-purpose Customer Relationship Management system (CRM) which should deliver upon the commitments in the Participant Service Improvement Plan and ongoing implementation of Tune Review recommendations.25 Features of the new CRM are outlined in the latest NDIS Quarterly Report to disability ministers.26

However, this is insufficient for capturing the full data range necessary for improving participant outcomes. For example:

a) While 1,140 people were waiting in hospital for a plan approval as of November 2021, no structured data is kept regarding their age, risk of admission to RAC, housing and support needs, change in plan funding or disability type.

b) The NDIA records the number of enrolled SDA dwellings by SA4 region 27 and design, and the number of participants with identified SDA needs by:

i) status, such as whether they are

  - currently living in SDA or not
  - seeking alternative housing

ii) SA4 region, being where they currently reside.

However, there is no data about where participants want to live, the SDA category they want to live in, or why they are seeking alternative housing.

Comprehensive data collection is essential to achieve and uphold the YPIRAC targets and support all participants with SDA eligibility. A functioning NDIS that meets the needs of participants requires comprehensive data about participants’ current living conditions, and about where and how they can best be supported. The Summer Foundation has outlined the minimum dataset required, see Appendix A.

Recommendation 11: The NDIA must implement a fit for purpose CRM that is representative of the core needs of participants to guide the market, support thin markets and highlight gaps or pressure in market channels.

25 See Recommendation 18 of the Tune Review. 26 NDIS Quarterly Report to disability ministers (31 December 2021) 27 Statistical Area Level 4

Comprehensive data sharing to drive continuous improvement is crucial to a financially sustainable NDIS. Appropriate tracking of participants to help them build and strengthen their capacity for independence and increased choice and control will enable the NDIA to better exercise its functions. The market can adapt, adjust and innovate, to benefit participants now and into the future.

TOR F iv. measures to ensure transparency of data and information

about the NDIS

As reported in the Summer Foundation’s SDA Investor Think Tank: Findings and Recommendations Report in August 2021, the SDA market is experiencing higher than anticipated vacancy rates. This is because most NDIS participants who are likely eligible for SDA are not aware of SDA funding, the implications this has for their freedom of choice, or the possible housing and support options available to them. By 2025, 30,000 participants will be eligible for SDA, with anticipated vacancy rates estimated at 3-7%. However, only 16,972 participants have SDA funding in their plans, 28 leaving some SDA providers with vacancies in 25% of their dwellings.

The NDIA’s role includes setting prices, shaping demand by determining participants’ SDA eligibility and allocating funds in plans. As the market steward, the NDIA has a responsibility to raise public awareness of SDA. To do this effectively, the NDIA must identify SDA-eligible participants on the NDIS database, and contact SDA-eligible participants to provide capacity building on housing options so participants can outline their housing needs and preferences. In order to have choice and control, NDIS participants must be properly informed about their options: ‘Without information on what is available, participants may either purchase services that do not meet their needs or not purchase services at all.’29

Information and resources for participants about housing and support need to be co-designed for and by people with disability; innovation is best guided by participants. Publishing plain language, participant-led videos, and other accessible guides (e.g. in Auslan and other alternative formats) on NDIA processes and decisions will better support people with disability. This information must be tailored to the needs of each participant and should take into account their preferred method of communication, to better enable education and understanding on the rights and services available to support them in making decisions.

“Create awareness of the different options and choices, so a person can choose what will work best for them, as a person. Write questions in a specific form, so anyone reading it can understand exactly what they are asking - make it black and white, direct and to the point. Don’t fluff around!”

Rachel* – Participant

28 Current as at 31 December 2021. See NDIS Quarterly Report to disability ministers (31 December 2021). 29 Carey, G., Malbon, E. (2020). ‘Information sharing as market stewardship in the NDIS.’

Recommendation 12: The NDIA must undertake a demand activation campaign to support awareness among SDA-eligible participants.

The Summer Foundation has worked with people with disability to develop a variety of resources to inform and assist younger people to understand their choices and options if they decide to move into SDA. These include:

a) The Tenancy Matching Service, which assists housing seekers and people who think they may be eligible for SDA to take the first steps towards choosing where they live and who they live with, and ultimately secure a home. Housing seekers are assisted by people with lived experience who have also gone through the process of determining SDA eligibility, looking for the SDA dwelling that best meets their needs, and then securing a tenancy.

b) An SDA explainer video series which provides easy to understand information for people with disability.

Participant demand data in the market is limited and causes difficulties for making informed investment decisions. This can affect investor confidence, since there is a risk that investors will finance inappropriate housing, which either does not meet the needs and preferences of participants or does not align with NDIA modelling. 30 The risk of vacancies is higher in an environment of uncertain demand, which in turn may impact the flow of capital into the market and the supply of housing being built.

Structured data will help inform the need for government interventions in thin markets, to address inequities in supports and outcomes for participants. Market interventions should include releasing more land for SDA providers to build dwellings, and tax concessions, grants, or subsidised/shared build costs to overcome barriers to cost effective delivery in rural and remote areas. A functioning market for all participants across all areas of the country is crucial to a functioning NDIS.

Recommendation 13: The NDIA needs to provide and invest in proactive accessible information around the rights and supports available to participants, and develop the capability and systems needed to routinely release detailed and timely demand data.

This must include:

a) A forecast of the total expected demand for SDA, including design categories.

b) The number of participants seeking SDA determinations and what types of SDA (and where) match their needs.

c) Assumptions behind the modelling for the annual budget for SDA.

Everyone benefits if the SDA market reaches its full potential – participants access appropriate housing, investors and providers are able to offer housing which enables positive outcomes, and the government leverages private capital that helps to achieve NDIS sustainability.

30 Specialist Disability Accommodation (SDA) Investor Think Tank: Findings and Recommendations

TOR G: The ongoing measures to reform the

Scheme including:

TOR G ii. planning policy for personalised budgets and plan flexibility

The NDIA has been working to improve NDIS access and planning processes to support participants to have greater choice and control in how they develop their NDIS plans and goals. However, many participants are not being supported to make decisions and fully participate in the planning and review process. Supporting participants to make informed decisions is of critical importance for a successful NDIS. Participants must be supported to explore housing and support options and to have their housing needs and preferences respected and upheld. A crucial element of addressing this is support coordination, as well as adequate information and resources to allow participants to fully participate in planning.

“We have a really good plan manager, and my sister’s using a Support Coordinator, and we’re very happy where we are sitting, but we have had to jump through a lot of hoops to get to that place”

“It is invaluable to me to have support workers on the ground.”

Joanna* – Family member

While it may be important not to standardise plans, there needs to be some consistency in the funding that is approved so participants and support coordinators know what their options are. Any new approach to planning must ensure participant budget setting is more transparent and there is greater flexibility over how NDIS funding is allocated and used.

“Flexible funding looks like having the freedom to use my funding in a way that suits my needs at any given period. So, there is set funding given to me for OT, or physio, and when you’ve got a progressive condition, you can’t forecast how much you’re going to need for the OT as your condition progresses and just having that flexibility to say, ’Okay I can use my core money if I run out of funds for the capacity building aspect of it.’ I think that needs to be more flexible.

“I think anything off the shelf you shouldn’t need a report or separate approval for. You’re spending more money on the reports than on the items you’re buying. There needs to be more flexibility to buy assistive technology without having to apply for it through that. There’s also still a lot of confusion around the AT process, and I still don’t know what I can and can’t buy - simplification of information provided by NDIA, has not provided clarity.”

“It is really important the meals situation remains being flexible. You might have a busy week coming up and you don’t want support workers in your house all the time. Because it does impact on your ability to meet deadlines and things like that when you’re working and studying and you’ve got to allow for time for the support worker to come in and give them instructions … Ordering your meals is

great occasionally, but that might not be sustainable to do all the time. You can’t have an either/or, this is where you need the flexibility. Giving people the choice and flexibility to make decisions based on their current situation and lifestyle. Apparently I could do this pre-covid but I didn’t know it, because there’s a lot of misinformation that comes about from the NDIA.”

Pippa* – Participant

The Summer Foundation’s response to the NDIS’ Personalised Budgets and Plan Flexibility Consultation provides greater information about the importance of plan flexibility.

Participant perspective on NDIS cost effectiveness

Participants want to be included in the Scheme and discussion around its sustainability. As users, participants have significant insight into what works and what does not.

“Reasonable and necessary means being able to live a life that’s on par with my peers. It’s having access to supports I need to be an active citizen … I understand the scheme needs to be sustainable. It shouldn’t be on us to sacrifice the quality of our life for the system. It should be on the government to fund and operate that system. Because our lives bloody well matter.”

Pippa* – Participant

“A lot of money is being put into the NDIS and quite a lot seems to be wasted through indecision and procrastination on behalf of the NDIS. For example, I’m sitting in a wheelchair I now own. The NDIS paid for it but I applied two years before, prior to that I was hiring and the NDIS was paying for a powered wheelchair at $166 per week over a period of two years, which came to a higher price than the wheelchair I purchased. So effectively they paid the price for two wheelchairs.”

Alex* – Participant

Flexibility and support arrangements should encourage innovation and move away from outdated and ineffective models of support. People with complex needs are often still limited to traditional disability accommodation, without flexibility of supports or choice about where and with whom to live.31

See the Summer Foundation’s Improving outcomes for participants who require Supported Independent Living (SIL): Provider and Sector consultation paper for further information about the benefits of an individualised funding model that allows greater flexibility, and more choice and control, for participants.

Recommendation 14: The NDIA must allow flexibility in reasonable and necessary funding, in line with disability needs.

31 Summer Foundation’s Improving outcomes for participants who require SUpported Independent Living (SIL): Provider and Sector consultation paper

Cost effectiveness is not purely value for money. NDIS costs must reflect participant needs and properly fund the supports and services required by participants. Providing adequate funding to participants when needed will enable them to build skills and functionality, develop independence and enhance quality of life. In the long term, early investment will result in participants who are able to be more active in their lives and therefore require less assistance to be funded. Ensuring appropriate funding of needed supports also prevents wasted fundings, unnecessary and stressful appeals and the stress of critical disruptions to daily living.

New NDIA funding to support YPIRAC

In December 2021, the Federal Government announced it will be investing an additional $35 million as part of its commitment to the YPIRAC Strategy. 32 Approximately $18.9 million of this is for additional NDIA staff to complement the Agency’s existing YPIRAC planners. However, it is not yet clear how this new funding will be spent, or if these staff will be in existing or new roles.

This funding will be better spent on improving and building on existing systems that have been shown to effectively support young people. As identified above, expansive systems issues exist preventing younger people from exiting RAC. Increasing staffing numbers within the NDIA, that replicate the functions that already exist within the Agency or the sector, is not a good use of resources and will not contribute to the achievement of the YPIRAC targets.

Securing alternative housing for YPIRAC

In addition to receiving timely and accurate determinations for SDA and housing related supports, younger people living in RAC require capacity building around the housing options which meet their needs, and access to experienced support coordinators to support a housing search. Currently, there is sector-led capacity building for support coordinators and allied health professionals, such as UpSkill and professional standards for Support Coordinators produced by Disability Intermediaries Australia. Yet, there is no standard in the capacity of understanding of support coordinators to navigate this complex space, particularly when a support coordinator is assisting a younger person to consider housing pathways.

32 Renolds, L & Colbeck, R (Minister for the NDIS & Minister for Senior Australians and Aged Care Services) 2021, $35 million investment to reduce the number of younger people in residential aged care, media release, 22 December 2021

Case Study: Alex*

A year after living in a residential care facility, Alex was able to move into SDA.

“I found out about SDA through the website Housing Hub which my support coordinator had shown me. My friend read through it and said this is good.”

Alex was helped to apply for SDA by his support coordinator, sister-in-law who is a social worker, brother and friend.

“With the help of my support coordinator it was easy. Again, my friend spoke to someone from a housing provider so she could fill the application in. They were working in tandem.”

The process for Alex was quite smooth. As he says, “I didn’t have to wait that long at all, I’m a prime candidate.”

There is an absolute need to strengthen the support coordination workforce to adequately navigate housing pathways for the participants they support. Additionally, allied health and other professionals need clarity on the evidence which is needed to inform determinations.

“We need some uniformity around scripture for Allied Health and need more training for health professionals around correct terminology for supporting documents for new items in plans. If paperwork isn’t done correctly then you have to resubmit. Especially when they don’t let you know and you’re pushing for what is going on. Nobody gets a response from the NDIS, it is just sitting there waiting for us to ask what is happening and then they let you know the paperwork wasn’t correct and needs to be resubmitted. We need some guidelines as it is getting harder and harder to get the NDIS support they need.”

Joanna* – Family member

Funding decisions by the NDIA are one of the greatest barriers preventing younger people from accessing the available housing. The provision of this funding is, as documented above, difficult for participants to access. It can be changed, reduced or removed in plan reviews conducted by the NDIA, despite clarity in the SDA Pricing and Payments Framework that once a participant is eligible for SDA, they would not lose this eligibility.33

This has also occurred with participants receiving a reduction of funding in SIL and supports, and being advised by an NDIA planner that they can no longer afford to live in the SDA and they need to live with other people with disability who they do not know.

This behaviour, in itself, demonstrates that the NDIA is not enabling participants to live an ordinary life, or have choice and control over their lives. The NDIA should make funding decisions that give participants power over the pursuit of personal goals, and the planning, engagement and delivery of their supports.

33 Specialist Disability Accommodation Pricing and Payments Framework para 71. 29

Recommendation 15: The NDIA should use the $18.9 million YPIRAC funding to better support timely outcomes for younger people in or at risk of entry into RAC.

This can be done by funding that will:

Make more timely and accurate decisions on SDA and housing related supports.
Build the capacity of professionals to provide the right evidence to support SDA and support determinations.
Build the capacity of the support coordination workforce to support participants through a comprehensive housing search based on their individual needs.

Funding for vacancy matching would also be welcomed, if performed by an experienced support coordinator, or a third party which works alongside and in partnership with the support coordinator, to identify the most appropriate housing based on the individual participants needs.

It is crucial that vacancy matching is not done by the Agency itself. The Agency is already responsible for providing funding for SDA, to the 6% of participants who are eligible, and housing related supports. Having the Agency play an additional role of matching participants to vacancies will create an obvious power imbalance where participants are not able to exercise choice over their housing.

Conclusion

The ongoing sustainability of the Scheme is vital for millions of Australians. People with disability, their families, close others, supporters and service providers all rely upon an efficiently working NDIS.

Closing the pathways that allow young people with disability to enter and remain in RAC does not sit solely with the disability sector. It is an intersectional issue, affecting other mainstream services including health, housing and aged care. Participants in RAC lose skills and face diminished social networks, resulting in increased costs to the NDIS as well as mainstream systems.

Focused systems change that reduces new admissions to RAC to zero and assists YPIRAC to re-enter and remain in the community is urgently needed. It is crucial that the provision of supports directly aligns with participants’ support needs and goals, and participants can access the right supports in a timely manner. This will also bring about savings to the NDIS which will continue into the future due to an ongoing reduction in support costs over time.

A financially sustainable NDIS achieves participant outcomes across their lifetimes. It focuses on maximising independence and igniting the possibility of living well in the community.

About the Summer Foundation

Established in 2006, the Summer Foundation works to change human service policies and practices related to younger people (18-64 years old) living in, or at risk of entering residential aged care facilities.

Our Vision is that younger people with disability and complex support needs live where and with whom they choose, with access to high quality housing and support options that enhance health, wellbeing and participation.

Our Mission is to create, lead, and demonstrate long-term sustainable systems change that stops young people from being forced to live in aged care because there is nowhere else for them.

The Summer Foundation has worked extensively with people with complex disability support needs to ensure they have access to all the NDIS supports essential to living the life they choose. A strong and sustainable NDIS is critical to achieve the targets of the Younger People in Residential Aged Care Strategy (2025).

Appendix A

The Summer Foundation recommends that in addition to what is currently being developed, the NDIA’s proposed CRM must also provide data-tracking of:

How many participants aged <65 in hospital are referred to ACAT
How many participants aged <65 in hospital are discharged to RAC
How many participants aged <65 discharged from hospital have SDA funding in their plans
How many participants aged <65 discharged from hospital have MTA funding in their plans
How many days it takes for NDIS eligibility/access to be approved for patients in hospital
How many requests for SDA the Home and Living Panel receive
The average time taken for the Home and Living Panel to make decisions
How many participants are found eligible for SDA by the Home and Living Panel
How many participants are found ineligible for SDA by the Home and Living Panel
How many participants are funded to live alone in SDA by the Home and Living Panel
How many participants are found to be eligible for SDA while in hospital by the Home and Living Panel
How many changes of circumstances in regards to SDA (s48), SDA reviews (s100) and appeals (AAT) were received
Whether participants are living in state-owned or previously state-owned SDA
Whether participants have had an SDA determination above the level of SDA they are currently living in (broken down by quarters, SDA Design Category, SDA Build Type including number of residents, age, disability group, and level of function)
How many participants with SIL funding were living in family homes, private rentals or non-SDA group homes
How many participants with SIL funding are seeking alternative housing as a goal in their plans

Number of participants in RAC who had a plan review to incorporate supports to assist them to explore options and move out of RAC