NDIA Accountability Project

Culture and Capability of the NDIA

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Culture and Capability

of the NDIA

Summer Foundation submission to the Joint Standing Committee on the National Disability Insurance Scheme

december 2022

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

summerfoundation.org.au

Introduction

The Summer Foundation welcomes the opportunity to make a second submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) on the capability and culture of the National Disability Insurance Agency (NDIA) and the impacts on the experiences of people with disability and NDIS participants (participants) specifically related to housing.

The current culture and capability of the NDIA does not adequately enable participants to live well in individualised housing. Inefficient administrative processes, a lack of transparency and a welfare mentality at the NDIA means that many participants do not feel equipped to transition to individualised housing and continue to live in housing that does not meet their needs. Participants report feeling stressed, not adequately supported and unsure of their housing options.1

Participants have shared stories of important and transformative improvements in their life that came from Specialist Disability Accommodation (SDA) and support funding through the NDIS. Without housing that is accessible, affordable and meets a person’s needs and preferences, people with disability cannot achieve “an ordinary life”.2 It is crucial that the NDIA strengthen their processes and reform their culture to ensure participants can exercise choice and control to live well in the community.

“My brother is a story of a young person who would have ended in aged care if it wasn’t for the NDIS – instead it took a team of people to fight for him to ensure that didn’t happen. He now lives in an SDA with the support he requires in place to achieve this.”\n\n- Frank*, close other of NDIS participant

1 Winkler, D, Brown, M, D’Cruz, K, Oliver, S, Mulherin, P, (2022). Getting the NDIS back on track: A survey of people with disability. Summer Foundation. Link here 2 National Disability Insurance Scheme (2021). Consultation Paper: An Ordinary Life at Home, July 2021. Link here

Summer Foundation | December 2022 | JSC Culture and Capability of the NDIA 2

Improving the capability of the NDIA

Enable people with disability to live an ordinary life

Everyone needs stable and appropriate housing to live a full life, including people with disability. Participants have reported that the NDIS has revolutionised their lives by providing funding that enables them to live well in accessible housing. However, participants also report that navigating the NDIS is complex and time-consuming, and creates a great deal of stress and uncertainty. Feedback from participants suggests many lack trust in the way the NDIS is run.

Specialist Disability Accommodation (SDA) is NDIS funded housing that has been specifically designed to meet the needs of people who have an extreme functional impairment and/or very high support needs resulting from their disability. Participants have shared stories of important and transformative improvements in their life that came from SDA and support funding through the NDIS. Research has shown that participants in SDA have increased independence, wellbeing and community participation, with reduced reliance on informal supports provided by family and friends.

“I am an adult with a disability and always thought I would live with my parents until they died or could no longer take care of me, then I would go into a nursing home. Now with the NDIS I am able to live independently for the first time in my life. This is due to supports for living at home and assistive technology such as a power wheelchair.”

  • Alex*, NDIS participant

The Australian Government has ratified the United Nations Convention on the Rights of Persons with Disabilities which commits them to upholding “the right to choose one’s residence and where, how and with whom to live”. The Committee on the Rights of Persons with Disabilities has expressed concern regarding Australia’s lack of available, able, affordable, and accessible housing. Research conducted by the Australian Housing and Urban Research Institute (AHURI) echoes this finding, stating that in contrast to its aims, the implementation of SDA has limited choice and control for participants. The impact of a challenging and inefficient process for NDIS Home and Living funding is that it leaves people with high support needs living in inappropriate housing situations. This includes hospital, aged care, or group homes – though suitable in some circumstances, are not appropriate for many people with disability.

As of June 2022, there are 2,934 younger Australians (under 65) with disability living in

residential aged care (RAC).10 While there has been movement toward the Federal Government’s Younger People in Residential Aged Care (YPIRAC) Strategy targets, the number of YPIRAC is falling in large part due to participants passing away or ‘ageing out’ of the cohort, as opposed to moving into appropriate housing that meets their individual needs. Last financial year, fewer people were supported to move into SDA (39) than in the 2020-2021 financial year (72).11 This demonstrates that more must be done to ensure YPIRAC are supported to explore their Home and Living options outside of RAC.

In order for people with disability to exercise true choice and control over their housing and support, there must be collaboration across the NDIA and all levels of government on building the capacity of people with disability on housing and support. People with disability must be supported to understand, document and search for housing options which meet their needs and preferences including mainstream (public, community, private) and SDA, as well as what support arrangements could meet their needs. In addition, state and territory governments must ensure adequate provision of accessible housing in their social, community and private housing stock to meet the needs of all people with disability, including those who are not NDIS participants.

One resource that can be leveraged by the government is the Housing Hub, Summer Foundation’s accessible housing matching platform for people with disability across Australia. The Housing Hub has produced a library of resources for both housing providers and people with disability to build capacity around housing options.

Getting the language right

There is a disconnect between the stated goals and intentions of the NDIS and the experience of participants. One of the foundational principles of the NDIS is that people with disability have choice and control over their lives. This is reflected in the NDIS Act, SDA Rules and other legislative mechanisms.

The SDA Rules state that SDA must “better assist the participant to pursue the(ir) goals, objectives and aspirations” and “substantially improve the life stage outcomes for, and be of long-term benefit to, the participant”.

However, participants have reported that many guidelines and processes from the NDIA do not align with their experiences, notably in housing and support. As part of a Home and Living application, participants provide evidence for the housing and supports they need. If they are not funded for the housing and supports requested, participants report that these decisions are not explained, they have no one at the NDIA to contact and no way forward. These determinations can reflect a lower funding level which is often at odds with the participant’s goals and their functional capacity needs.

One impact of this disconnect is an increasing number of NDIA determinations that do not align with participants’ needs and preferences or the legislation. This has led to increased numbers of participants appealing to the Administrative Appeals Tribunal (AAT). Recent analysis by the Housing Hub and Public Interest Advocacy Centre (PIAC) found that 92% of participants who appealed a Home and Living decision through the AAT received the determination they had originally requested from the NDIA. This suggests that the majority of Home and Living decisions made by the NDIA are inaccurate.

Though participants reported that access to housing and support through the NDIS has transformed their lives, participants also report feelings of stress and confusion throughout the process. Many are fearful that the improved quality of life that their housing and support has resulted in could be taken away at any moment by a change in policy or simple miscommunication.

The NDIA must ensure their communication with participants, from formal documentation to conversations at planning meetings, is clear, sets accurate expectations and reflects the way the NDIS operates in practice. The NDIA must ensure it is using language which is clear to participants and that offers a common understanding between government, people with disability, their supporters and the sector. Participants have identified the importance of NDIA staff communicating respectfully, listening to the participant and recognising them as experts of their own lives. Participants must have one point of contact at the NDIA to avoid confusion and address concerns early. The relationship between the NDIA and participants must be a partnership which operates with clear and transparent communication and works together on solutions.

Improving communication

Recommendations:

  • A culture of strong and transparent communication between the NDIA and participants is established. Participants have clarity and understanding of NDIS operations and decision-making.

  • Communication between participants and the NDIA throughout the Home and Living process must be improved. Participants and their supporters should be linked with an NDIA point of contact for a Home and Living application.

Improving decision-making and administrative processes

We are encouraged to see recent initiatives that seek to improve the efficiency of NDIA’s internal systems and Home and Living processes. This includes the new Information and Communication Technology (ICT) system, PACE16 and the new Home and Living supporting evidence form which aims to ensure housing and support requests are coordinated and assessed together.17 Whilst these are positive steps, the impacts of improved processes have not yet been realised by participants.

There are many NDIA systems and administrative processes that are opaque and create stress, uncertainty and unnecessary delays for participants.18 Many participants have reported that there is little transparency on the Home and Living determination process19 and some aspects seem to depend on the skill and experience of a planner. There is no clarity on how legislated criteria of reasonable and necessary supports20 are weighted, particularly against the demonstrated needs and preferences of the participant.

Participants and support coordinators alike report stress and frustration from NDIS administrative delays.21 22 Though there have been positive steps in this area, notably that the Participant Service Guarantee time frames are now a legislated requirement,23 analysis by the Housing Hub and PIAC found that extensive wait times continue to occur with Home and Living decisions. The median wait time for an initial Home and Living funding decision was 97 days, and if the decision is reviewed internally and externally there was a median wait time of 401 days.24 Home and Living decisions for those living in inappropriate settings such as hospital or RAC should be made in 10 days. One way this can be addressed is through use of data to automate some administrative processes, for example using data to approve an initial plan for participants with disability that are medically ready to be discharged from hospital but are still determining their ongoing support needs.

“I am currently requesting a plan review from the NDIS so that I can live a semi-independent life in a place of my own and away from group housing. This process has taken approximately 3 years since I first applied and with the COVID restrictions and the increased barriers the NDIS has put in place, I am still waiting to get that approval.”

– Nelly*, NDIS participant

Recommendations:

  • The NDIA must make timely and accurate Home and Living funding decisions in keeping with the legislated Participant Service Guarantee. Decisions for those living in inappropriate settings such as hospital or RAC should be made in 10 days.

  • To improve the transparency of Home and Living funding decisions, NDIA Planners should provide explanations for funding decisions made in a way that aligns with the communication preferences of the participant.

Support for Home and Living decisions

Evidence from Allied Health Professionals

To make a Home and living determination, the NDIA relies on evidence provided by participants and often produced by AHPs. Despite this, there is very little guidance from the NDIA regarding the specific evidence needed to make a decision. Consequently, there is huge variation in the amount, quality and relevance of the information provided to the NDIA. Many functional capacity assessments by AHPs are well over 100 pages long. This lack of certainty means AHPs find it challenging to provide the necessary information to the NDIA and instead provide all information which might be relevant to the decision, in the hope it will enable the right funding outcome.25

A recent survey of occupational therapists identified that clearer expectations from the NDIA will enable more concise functional capacity assessments, providing decision-makers with the most relevant information for funding decisions.26 The NDIA should release written guidelines regarding the specific evidence needed for a timely SDA and support decision which would enable stakeholders to assist the NDIA by providing concise and relevant information that is aligned with the NDIS legislation. AHPs also would benefit from NDIA training and capacity building on Home and Living to improve expertise across the sector.

  "(We need) clearer guidelines for OTs delivering this service. More openness
  and transparency within the process on the NDIA's behalf. In my practice I do not see any consistency between one determination to the next and I clearly believe this is unfair and some people are missing out on opportunities they deserve just as much as the ones who are receiving them." 
     - Carlos*, occupational therapist

Recommendations:

  7. Release written guidelines regarding the specific evidence needed for a timely
  SDA and support decision, including a step-by-step process and common
    language.

  8. Design a streamlined process with occupational therapists, using common
    language, defined criteria and clear expectations to provide more concise and
     rigorous reports for the Home and Living Panel.

  9. The NDIA must collaborate with Occupational Therapy Australia and the Summer
    Foundation to develop a training program for occupational therapists completing
     reports for Home and Living requests.

Support coordination

Despite the importance of their work, support coordinators face poor role definition and guidelines from the NDIA. As a result, there are workers with varying levels of knowledge and expertise, leading to a variability in the quality of support provided. Support coordinators have reported challenges in providing quality navigation of Home and Living supports due to the complexity of the pathways and the lack of information on navigating a housing journey.

Participants with complex needs who are exploring housing options should be supported by specialist support coordination. This should be delivered by support coordinators with experience in navigating the Home and Living pathways and mainstream housing. For younger people living in RAC, participants in hospital or other unsuitable housing, having access to 40 hours of Level 3 specialist support coordination dedicated to Home and Living will enable more effective exploration of housing options and navigating the transition into individualised housing.

All specialist support coordinators must have access to professional development opportunities and resources that enable them to deliver high quality support coordination to participants. Currently the NDIS Price Guide for support coordination does not allow for adequate training for capacity building of the workforce, requiring a model of 90% billable hours. Quality specialist support coordination must extend beyond basic functions such as connecting with mainstream services, and address more comprehensive supports such as health, housing, capacity building, goal setting and independence.

“There was a lot of work involved in gathering the reports and evidence [to\nsupport my application]. I needed to provide information, feedback and\nclarification to the [occupational therapist]. Some of the information required is\nvery invasive. [My] support coordinator helped with organising the application\nincluding the therapists required to do assessments and provide supporting\nreports. They also helped me to navigate the system and provided emotional\nsupport through the frustratingly long process.”\n\n- Darryl* - NDIS participant

Recommendations:

  1. Release written guidance for support coordinators on how to support a participant to navigate their housing options and apply for Home and Living supports.

  2. Every participant with complex needs should have 40 hours of Level 3 specialist support coordination funding included in their plans to enable them to explore and request the housing and supports they require.

  3. Require ongoing training and professional development for specialist support coordinators and build adequate hours for training into the NDIS Price Guide.

NDIA as market steward

In order for the SDA housing market to meet the needs and preferences of participants, the NDIA must work to ensure the SDA housing market is robust, diverse and innovative. The NDIA acts as SDA market steward and has responsibility to build and maintain market confidence. It also needs to monitor and actively manage risks and facilitate the provision of reliable and accessible information on SDA. Without adequate market stewardship, the SDA market is at risk of collapse and should that occur, quality and purpose built housing for people with disability will cease to exist.

Investment fund managers have expressed a lack of confidence in the SDA market due to NDIA’s lack of market engagement and a lack of transparency on the demand and supply pipeline. The NDIA provides very limited information on SDA supply and demand, notably not publishing build type and living arrangement data. Given the multi-year timelines associated with building new SDA, this is insufficient to inform investment decisions. In addition, SDA providers are reporting rising vacancies and low confidence in the SDA market. Over 48% of providers said it takes at least 6 months to fill a single vacancy and 70.4% reported that the NDIA owes them SDA payments for tenants living in their properties.

Further contributing to demand pipeline issues, data shows that significant potential demand for SDA has not been activated. It is estimated that 30,000 people, or 6% of NDIS participants, are eligible for SDA funding but only 20,090 participants have SDA funding in their plans. Of these, only 12,623 participants are actually receiving SDA payments and the majority of those are living in existing or legacy stock. This demand gap suggests that thousands of participants are unaware of the existence of SDA, have not been supported to explore their eligibility for SDA funding or do not have the appropriate level of SDA funding in their plan. To address these issues, the NDIA must undertake a demand activation campaign so those that are eligible for SDA understand their housing options and have the right level of SDA funding in their plans. This will enable the effective use of SDA housing currently sitting vacant, as well as eligible participants acting as empowered consumers in the housing market.

The NDIA collects a range of data that, if analysed and released, could provide a vital resource for investors and providers. This data would allow investors and providers to make informed decisions about the demand for location, type, size and features of housing for people with disability, and increase market confidence. The NDIA must take an active role in ensuring that Australia moves towards an innovative and diverse disability housing market that allows for choice and control, and dismantles the ‘take what you can get’ mentality that pervades the current market.

Separation of housing and support

Another way in which the NDIA must act as market steward is by creating mechanisms to protect participants from possible risk and coercion in their home. Many participants live in homes in which the housing and support is delivered by the same provider, also called Supported Independent Living (SIL) homes. This puts participants at increased risk because the stability, quality and safety of a participant’s home and their right to exercise choice and control is limited when a provider has competing interests. A participant may be hesitant to raise concerns or complain if they believe it may put their housing and supports at risk.

A stated outcome in the NDIS Practice Standards is that “each participant accessing a specialist disability accommodation dwelling is able to exercise choice and control and is supported by effective tenancy management” but this is not enforced. The NDIS Quality and Safeguards Commission must mandate the complete separation of housing from other NDIS support as a condition of NDIS provider registration.

Recommendations:

  • Undertake demand activation by including the right level of SDA and supports funding in the plans of eligible participants.
  • Improve clarity on the demand side of the SDA market by publishing comprehensive SDA demand reports. These will provide more transparency for providers, investors and participants on current and anticipated demand for SDA, such as the required building type, design category and desired location.
  • Use the available supply of SDA by approving participants for funding to move into the hundreds of vacant SDA properties currently on the market.
  • Mandate the complete separation of housing from other NDIS support as a condition of NDIS provider registration.

Culture

NDIA Values

The NDIA operates with a ‘welfare’ mentality that assumes some supports for participants are unnecessary or too costly, rather than trusting the participant to request what they need and are entitled to. Participants have reported not feeling listened to by the NDIA and frustration at not being seen as experts in their own lives. There appears to be a paternal culture within the NDIA of a lack of trust in participants and an assumption that many ask for more than what is reasonable and necessary. For example, some participants wish to live independently, but their Home and Living determination is for a less expensive support that reflects traditional models of disability support, for example congregate or group housing.

One of the ways the NDIA determines a support is reasonable and necessary is by assessing its ‘value for money’. This decision-making tool looks solely at costs, possibly on a line by line basis, rather than true costs and benefits for the participant. As a result, two or three person shared SDA is often considered better value for money than a person living on their own or with family. However, congregate settings are not always better value for money, particularly if a participant has a strong preference to live alone and is able to gain independence, capacity and confidence in living alone. Data shows that the median annualised cost of supports for a single resident apartment is up to $51,000 cheaper than some alternatives with 2 or 3 residents. Research has found that budgetary outcomes are much more sensitive to support costs than accommodation costs and if SDA dwellings are well designed to reduce the cost of delivering support, it could reduce net NDIS costs in the long term.

The NDIS Support for Participant Rules state that in deciding if the support represents value for money, the NDIA should consider “whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term”. The legislation states that the NDIA must consider both the benefit to the participant along with the cost. This means that any assessment of value for money must look holistically at the needs of the participant, including goals, choice, and the benefit that will be achieved through the specific support and the long-term (or lifetime) cost. Well built housing, with the right supports will enable a participant to build their independence and capacity over time, and reduce the need for funded supports.

“I’ve been waiting over a year to get the correct SDA into my plan. While I’ve been waiting for this approval to come through there’s been an apartment waiting for me and I’ve spent more than $80,000 in the accommodation where I’m staying now. It’s absolutely a huge waste of money. I can’t buy stuff until I have my own place, so I have to hire, which is astronomical prices, and nothing suitable for myself, everything is going backwards” – Chris* - NDIS participant

Participant-first culture and restoring trust

The NDIA must adopt a participant-first culture. This describes a way of working in which the impact on needs and preferences of participants are central to all decision-making and that co-design with people with disability is standard practice throughout the operation of the organisation. A participant-first approach is supported by the United Nations Convention on the Rights of Persons with Disabilities.

Participants, their families and close others, are best placed to advise on what are reasonable and necessary supports for them to live an ordinary life. Housing is a vital personal and private space that allows people to have fulfilling social and community lives, pursue employment, have relationships, and manage their own lives. The NDIA needs to implement a participant-first culture by understanding participants’ needs and goals and ensuring funding decisions actively enable choice and control at every stage.

PIAC and the Housing Hub believe that the focus on cost in Home and Living by NDIA decision-makers is disproportionate and unhelpful. The NDIA must give greater weight to the many ways that appropriate housing can improve the lives of participants, and consider all evidence submitted to determine the funding for Home and Living supports. Decisions must reflect the principles that underpin the NDIS, enabling participants to build capacity to achieve their goals. The NDIA needs to understand participants’ needs and goals and ensure funding decisions actively enable choice and control. Above all, the NDIS must see participants as experts in their own lives.

Conclusion

The current culture and capability of the NDIA is not meeting the needs of participants, but it can be changed. Through ‘getting the NDIS back on track: A survey of people with disability’, participants reported that they live in fear of funding being cut, experience a lack of communication, collaboration and relationship building with the NDIA, as well as poor timeliness and efficiency.

As a result of inefficient administrative processes and a welfare mentality, many participants are living for longer in housing not designed for their needs, which negatively impacts their health and wellbeing. It is vital the NDIA consider the long-term benefits of providing funding for a participant to live in a home that suits their needs and preferences, such as increasing independence and community connection over time.

NDIS legislation and NDIA governing documents outline a framework to “ensure that the decisions and preferences of people with disability are respected and given appropriate priority”, but there must be active changes to ensure that language is operationalised to change the day-to-day experiences of participants.

The NDIA must take an active role in ensuring that Australia moves towards an innovative, diverse disability housing market that facilitates choice and control. With the powerful voice of the Joint Standing Committee on the NDIS, real systemic change can be effected at the NDIA so participants are able to live well in their community and exercise true choice and control over their lives. Trust and confidence in the NDIS and the NDIA can only be restored if participants are seen as experts in their own lives.

About the Summer Foundation

The Summer Foundation was established in 2006 and exists to permanently stop young people with disability from being forced into residential aged care (RAC), ensuring people with disability have access to the support required to be in control of where, how and with whom they live.

The Summer Foundation works to support people with disability who have high and complex disability support needs. It has a strong focus on supporting people with disability to access quality housing, which meets their needs and preferences, and enables them to live well in the community.

The Summer Foundation has established a number of social enterprises, including the Housing Hub and UpSkill. Capacity building of people with disability, their close others, support coordinators, allied health professionals and other key supporters is a central feature of the work of the Summer Foundation.

The Summer Foundation works to influence, challenge and build capacity of the systems, policies and markets that need to change; to permanently eliminate the need for young people with disability to live in RAC.

We focus on unique, high impact interventions that complement the efforts of government, relevant sectors, markets and other organisations. We use a range of tools including: