Towards a more equitable NDIS

28 February 2022

Allied is a group of allied health professionals committed to working towards more equitable health and disability services. We welcome the opportunity to contribute to the Joint Standing Committee on the NDIS - Scheme Implementation and Forecasting for the NDIS, February 2022.

Our submission focuses on two key areas that merit scrutiny, as sources or consequences of inequity with the Scheme. These are:

Functional assessments and calculation of Typical Support Packages (TSPs)
Unmet disability needs of people living in Private Congregate Care (PCC) settings

KEY RECOMMENDATIONS

A. The development of formal strategies to ensure that allied health professionals are appropriately consulted by the NDIA to enable us to contribute to an evidence-based, more equitable NDIS of the future, including building equitable assessment processes. These could include:

The establishment of a committee of clinical oversight
Consideration of the role of the Commonwealth Chief Allied Health Officer within the NDIS framework
A specified allied health representative on the Independent Advisory Council
A combination of strategies to prevent advancement of costly, flawed clinical processes as per the now sidelined ‘Independent Assessments’.

B. That the unmet needs of people with disability living in PCC be formally recognised. Specifically, we ask the Committee to consider recommending that the NDIA:

Address the unmet needs of PCC residents through explicit inclusion in the upcoming Home and Living policy co-design process;
Develop targeted strategies for this group, including complex care pathways, access to complex needs planners; and
Attend to the ‘interface’ challenges identified, including considering better access to independent advocacy for this cohort.

FUNCTIONAL ASSESSMENT, AND CALCULATION OF TSP’S

TOR C

The reasons for variations in plan funding between NDIS participants with similar needs, including: i. the drivers of inequity between NDIS participants living in different parts of Australia, ii. whether inconsistent decision-making by the NDIA is leading to inequitable variations in plan funding, and iii. measures that could address any inequitable variation in plan funding

Allied would like to acknowledge the work done by the NDIS JSC on the Inquiry to Independent Assessments (October 2021), and is appreciative to read the finalised report tabled in parliament in October 2021. The recommendations that focus on best-practice, evidence-based assessment processes, that are co-designed with participants and allied health professionals, are highly commendable, as is the proposal to bulk-bill assessments for NDIS applicants. We look forward to the Government response to this landmark JSC report.

With regard to plan funding equity within the current NDIS planning process, we would like to draw the JSC attention to the NDIS planner process of assigning ‘Typical Support Packages (TSP’s).

The current process of assigning participants with a ‘functional level’ through the NDIS planning process (as disclosed through the National Disability Insurance Agency (NDIA) response to a question from Senator Jordan Steele-John, taken on notice on 18 May 2021 (Reference IQ21-000015 )[4] See Appendix A for ease of reference) raises equity concerns. The NDIA response lists the assessment tools required by planners for each disability type, and the score ranges (cut-off scores) determining high, medium, and low levels of function that are used as an input to determine funding level, or ‘Typical Support Package’ (TSP). While the assessment list was made public, the evidence base underpinning the assessments, and score ranges that determine high, medium, and low functionality, were not released.

From the disclosures on 18 May 2021, it appears that participants’ functional ‘level’ is determined in one of two ways. Either an NDIS delegate, an administrative officer, will define a ‘level’ by asking the participant the questions from the generic self-report tool used internally (presumably, the WHODAS-2). Or, if the participant’s functional reports provided by their known allied health professionals happens to include assessments matching those on the planner list, those assessment scores are used to determine functional ‘level’. Clearly, this is an inconsistent process.

There are many assessments on the disclosed planner assessment list, and only the WHODAS-2 is administered by NDIS planners for the adult population. So, the system carries the assumption that some of the assessment scores will come from participants’ known allied health professional reports, presumably in many cases, occupational therapy (OT) functional assessments.

However, allied health professionals have not been informed about the use of assessments in this way and, in some cases, do not regard the assessments on the list as best-practice functional

Assessments

assessments for the particular disability types e.g. Life Skills Profile (LSP 16) for psychosocial disability. Importantly, there is no evidence for the use of these assessment to identify supports needs and corresponding funding levels.

Interestingly, the July 2021 Quarterly Report Addendum document titled ‘Analysis of reported level of function trend’ (p. 9), details the ‘level of function trends’, analysed by how, and who, completed the assessment leading to determination of ‘functional level’.

It highlights a greater apparent trend towards functional decline over 5 years, when the functional level is determined by the internal, generic assessment tool (presumably, the WHODAS-2 delivered by planners/delegates). The proportion of participants assessed as ‘low’ functioning grew by 15% using the internal assessment tool administered by NDIS planners/delegates.

The apparent trend towards functional decline over 5 years was significantly reduced, when the functional level was determined by external disability specific assessment tools (presumably, as assessments completed externally by allied health professionals using consistent, tailored assessment strategies). The proportion of participants assessed as ‘low’ functioning grew by 4% using disability specific assessment tools (presumably delivered by participants allied health professionals providing reports).

There is a huge discrepancy between a 15% increase in participants showing functional decline, and a 4% increase in participants showing functional decline, when the 5-year dataset on functional ‘level’ compares internal generic assessment of function, and external, disability-specific assessment. The former appears to have been planner-delivered, whereby the latter appears to have been delivered by external allied health professionals with expertise in functional assessment. This discrepancy begs further scrutiny of the quality and accuracy of determination of functional ‘levels’, particularly when the functional levels are used to inform funding decisions; or to ascribe a judgment about broad, large-scale functional decline of NDIS participants.

The consistency, reliability and validity of the current system of assigning functional ‘levels’ requires examination, to ‘get to the bottom’ of the reported apparent trend of functional decline in NDIS participants, as well as plan funding inequity. This work will assist future discussions aiming to explore strategies to co-design a new, person-centred NDIS assessment process.

In summary, we ask that the Committee consider recommending formal strategies to ensure allied health professionals are appropriately consulted to enable us to contribute to building an NDIS for the future. There is much work to be done over the next 1-2 years to build a person-centred assessment process. This work will be key in achieving plan equity by basing participant funding on disability support needs. However, there are limited formal consultation avenues guiding NDIS collaboration with allied health professionals. Allied Health Professionals Australia (AHPA) has previously proposed a Committee of Clinical Oversight, or clinical governance. Other strategies that could ensure allied health professional peak bodies are consulted, could include consideration to the role of the Commonwealth Chief Allied Health Officer within the NDIS framework; or a specified allied health representative on the Independent Advisory Council (IAC). These strategies have the potential to hugely contribute to building a robust, evidence-based NDIS for the future, and prevent the future advancement of costly, flawed clinical processes as per the now sidelined ‘Independent Assessments’.

In addition, we seek that the JSC fully explore the current process of using planner-determined assessment scores as an input to TSP determination, as a source of plan funding inequity.

2. UNMET DISABILITY NEEDS OF PEOPLE LIVING IN PRIVATE CONGREGATE CARE SETTINGS

2.1 ABOUT PRIVATE CONGREGATE CARE FACILITIES

Private congregate care facilities provide privatised, group home accommodation and models of care. They exist Australia-wide and are known as Supported Residential Services (SRS) in Victoria, Psychiatric data hostels in WA, Licenced Boarding Houses in NSW, Supported Residential Facilities in SA and Boarding Houses and Hostels in Queensland. Collectively, they accommodate over 4000 Australians with disability, and those who cannot live independently.

2.2 WHAT ARE THE UNMET NEEDS OF PEOPLE WITH DISABILITY LIVING IN PCC?

A significant proportion of people living in PCC live with disability. For example, in SRS in Victoria, this is approximately 96%. The types of disabilities residents are likely to have include premature frailty (42%), psychiatric disability (39%) and intellectual disability (20%). A significant proportion experience more than one disability and had additional complex needs. For example, people with severe and enduring mental illness, or a cognitive disability, who have been homeless, discharged from hospital, recently incarcerated, or estranged from family and other support systems. Many do not have contact with family members or the support of a legal guardian. PCC are often the accommodation option of last resort. Staff levels are frequently low, often 1:30, and largely untrained

PCC residents are at heighted risk of violence, neglect and abuse. For example, in late 2021, the Office of the Public Advocate (OPA) published the Annual Community Visitors report, and documented significant concerns for people living in SRS. Community visitors are empowered by legislation to inspect SRS, and have the power to make these inspections unannounced. Community Visitors described evidence of neglect of resident’s needs, including instances of reduced access to food and water, medication mismanagement, bedbugs, soiled sheets, and untreated wounds. In addition, PCC facilities typically retain many of the features of institutional environments and residents are at increased risk of both authorised and unauthorised restrictive practices.

It was hoped that the commencement of the NDIS would improve the lives of people living in PCC. While there has been benefits for some residents, there are growing challenges for NDIS participants living in PCC. As revealed by a Fairfax media investigation in 2021 and early 2022, there are grave concerns that NDIS participants living in private congregate care are vulnerable to targeted exploitation of their NDIS plans. People living in ‘closed system’ arrangements, where a single provider delivers both accommodation and care, are most at risk of exploitation, or of becoming ‘captive’ to a single proprietor. There is an urgent need for policy initiatives focused on separation of care and accommodation provision for this cohort.

Further description of unmet disability needs is described under the relevant Terms of Reference (TOR) provided by the Committee, below.

2.3 TOR B.

The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Commonwealth, particularly aged care, hhealth, education and justice services.

PCC residents who are NDIS participants frequently experience complex needs requiring coordination across multiple systems. There continues to be a need to strengthen the ‘interface’, across a range of service sectors. For example:

Interface 1: Health and mental health services, and the NDIS

The interface with health services continues to be a challenging space to navigate for people with psychosocial disabilities. This is particularly true for people who live in PCC settings.

For example, there have been many examples where participants living with psychosocial disability have been turned away or discharged from clinical mental health services directly to PCC settings, without appropriate follow up and without established NDIS support.

In these examples the mental health systems maintain that certain supports are the responsibility of the NDIS to establish (are related to “disability and functional supports”), and the NDIS does not recognise the complexity of support needs and declines funding based on lack of evidence or the perception that supports are the responsibility of mental health services (are related to “supports that are clinical in nature”).

Falling through the safeguarding and service system gaps increases the risk that these individuals enter service agreements with proprietors who promise to offer both accommodation and care, who then receive sub-standard or unsafe services on both fronts.

Interface 2: NDIS Home and living options and state-regulated housing sectors

For PCC residents, access to appropriate alternative housing continues to be extremely difficult, and there continues to be substantial unaddressed housing needs. Supported Independent Living (SIL), Individualised Living Options (ILO) and Specialist Disability Accommodation (SDA) are reportedly increasingly difficult to have funded in participant’s plans, even when there is strong evidence of need and eligibility. Many health professionals report that SRS residents are declined NDIS housing options due to perceptions by planners that they are housed securely or appropriately; that State-based housing options may be available; or declined on the basis that there has been insufficient capacity-building intervention - when PCC are environments at best not conducive to, at worst prohibitive of, capacity building.

It is imperative that the experiences of those living in PCC are ‘journey mapped’ (to use the term that NDIA identified in their Home and Living consultation paper in mid-2021, that describes a process to fully understand participants experiences) as part of the NDIS Home and Living policy co-design process, to understand the challenges in leaving PCC facilities and sourcing suitable home and living options for this cohort.

2.4 TOR C. The reasons for variations in plan funding between NDIS participants with similar needs, including: iv. the drivers of inequity between NDIS participants living in different parts of Australia.

Large-scale data on NDIS functioning can mask pockets and populations experiencing extreme inequity in NDIS experience and plan funding. While PCC facilities exist Australia-wide, inequity is not driven by geography, but invisibility of the risks facing people with disability who reside within them. This cohort are described as invisible as their needs are not broadly understood by service systems including the NDIS, and they typically do not have capacity to self-advocate or navigate complex service systems. These factors combine to create inequity of access to appropriate supports, including home and living supports. Many do not have contact with family who can act as plan nominees, or have guardianship in place, or access to independent advocacy. Many do not have access to a phone, or literacy skills to confidently engage with written communication. Strategies to ensure supported decision making are not available. As described above, false perceptions by NDIS planners exacerbate these challenges, and this issue was compounded further by the pandemic- driven increased reliance on phone-based plan reviews and ‘rollovers’, rendering PCC environments and residents even less visible. Effectively, NDIS processes are not accessible to many people with disability living in PCC facilities. This leaves them vulnerable to exploitation of their NDIS funds, by proprietors offering care and accommodation.

2.5 TOR H. Any other related matters.

Regulatory systems do not optimally support safe and quality services

The regulatory systems overseeing the care of NDIS participants living in PCC are complex, and include State-based regulators of PCC proprietors and facilities, and NDIS Quality and Safeguards Commission holding responsibility for ensuring safe care of NDIS participants. The current regulatory framework does not prevent exploitation of NDIS participant plans by PCC providers. This is a significant issue that undermines the benefits of the NDIS for people with disability living in PCC facilities. PCC residents are vulnerable to exploitation from the PCC provider, with most being unable to make a complaint for fear of jeopardising their accommodation and supports. There is clear evidence in Victoria of providers evicting residents when they chose not to engage the accommodation provider as their core support and/or Support Coordination provider. When complaints regarding PCC proprietors have been made by health providers to the Quality and Safeguards Commission, there has been a failure to follow-up the complaint, with the rationale provided being that the participant must raise the complaint themselves. As described, making a complaint puts them at risk of homelessness, abuse or further exploitation.

CONCLUSION

We, Allied group, express our gratitude to the Committee for this opportunity to offer a Submission. We ask that the Committee consider our recommendations as outlined above.