Chapter 5Choice and control

Introduction

5.1Choice and control for participants is a key principle of the National Disability Insurance Scheme (NDIS). The objects of the National Disability Insurance Scheme Act 2013 (NDIS Act) include to 'enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports', and to support their 'independence and social and economic participation'.[1]

5.2This chapter examines how well the NDIA is enabling people with disability to exercise choice and control in relation to their NDIS plans and supports. To do this, it examines five factors that have a significant impact on the exercise of choice and control, according to the evidence provided to the committee, namely

structure of NDIS plan funding;

NDIA staff training and culture;

access to supported housing;

First Nations status; and

cultural and linguistic diversity.

NDIS plan funding

5.3The NDIA's classification of funding into separate and often inflexible categories can present difficulties for participants. Participants' needs change over time. Many participants have told the committee about the frustration they have experienced when they have needed a particular support, but the funds remaining in their plan were already allocated for other fixed purposes. This meant that even though the funds were there, they could not be spent as the participant wished at the time. This can inhibit the choice and control of the participant.

5.4When NDIS plans are created, funding is allocated to three main categories of supports, often referred to by planners and participants as 'buckets' of funds:

Core Supports budget

Capacity Building budget

Capital Support budget

5.5The Core Supports budget is described by the NDIA as the most flexible area of funding, including four categories of support:

consumables;

daily activities, such as assistance with self-care;

assistance with social and community participation; and

transport.[2]

5.6The Capacity Building budget encompasses eight sub-categories of supports, mapped to goals in participants' plans. These categories include:

Choice and Control, for example, training in planning and plan management;

Daily Activity, for example, therapies to build capacity to participate;

Employment, for example, employment related assessment and counselling;

Health and Wellbeing, for example, exercise advice required because of impact of disability;

Home Living, for example, support to obtain and retain appropriate accommodation;

Lifelong Learning, for example, assistance moving from school to further education;

Relationships, for example, positive behavioural support strategies to reduce behaviours of concern; and

Social and Community Participation, for example, individual life skills development and training including public transport training and support, developing skills for community, social and recreational participation.[3]

5.7Capacity Building funds can be used to purchase any approved individual support within its category, but participants are not permitted to move funding from one category to another. Furthermore, any services listed in a plan as 'stated supports' are not flexible. Funding allocated for a specific support or service cannot be used for anything else.[4]

5.8The NDIS Review recommended that the NDIA allow greater flexibility in how participants can spend their budgets, with minimal exceptions. The proposed flexible budget would include funding for supports currently known as core and capacity building supports.[5]

5.9The inflexibility and lack of clarity regarding funding buckets has been a source of significant frustration for participants, carers and service providers. During its most recent inquiry into the Capability and Culture of the NDIA, the committee received evidence from a participant that:

My experience is that the scheme is a bureaucratic nightmare and that even though I have post grad qualifications I am constantly unsure that I am taking the right items out of the right buckets of money. The terminology used and its inconsistent use across different formats given to participants is confounding. It is as if it is deliberately set up to confound.[6]

5.10Noting that capacity building supports are designed to build independence and reduce future reliance on the scheme, another participant shared her dismay that her capacity building budget was a small fraction of her core supports budget:

This appears to reflect a disturbing lack of priority given to the provision of supports which are actually designed to increase a participant's independence and wellbeing, rather than to maintain existing levels or indeed encourage a greater reliance on funded supports. Furthermore, the comparative lack of flexibility in the capacity building budget which can only be used to purchase existing services funded at the time of the plan's development, provides no capacity for the participant to grow and develop their support needs throughout the plan period of often up to 3 years.[7]

5.11The Capital Support budget relates to supports such as assistive technology or modifications to homes or vehicles. Funds within this budget can only be used for their specific purpose (for example, a rail in the bathroom or a wheelchair) and cannot be used to fund other items.[8]

5.12National Assistive Technology Alliance submitted that there is often limited allocation in capacity building budgets for human services that are necessary for good practice assistive technology provision, such as holistic and independent advice or assessment. The Alliance shared the experience of a participant who was frustrated that funds were available in the plan under capacity building but not capital support. This meant that the participant was unable to buy technology supports that would improve capacity because the supports were classified as Capital Supports.[9]

5.13On 9 May 2023, the government announced $29.3 million over two years to establish an expert advisory panel and work with participants and providers to make it easier to access quality assistive technology and other supports.[10]

NDIA staff and culture

5.14Participants, families, carers and service providers have repeatedly called for NDIA staff training and culture to be improved. The committee's recommendations over a number of parliaments have reflected these concerns. As a case in point, in its most recent report, the committee recommended that the NDIA improve staff training and skills regarding invisible, episodic, rare, and psychosocial disabilities.[11] Consistency of practice and better support to participants would improve choice and control for NDIS participants.

5.15Recent government investments to improve NDIA staffing and training include $429.5 million over 4 years from 2023–24 to invest in the agency's capability and systems, to improve processes and planning decisions. The initiative is focused on recruiting more NDIA planners and providing training, tools and system improvements so NDIA staff and partners in the community have the right skills and experience to better support participants.[12]

Local Area Coordinators (LACs)

5.16The NDIA describes the role of a LACs as supporting people with disability to create and work towards their goals, build capacity to make their own decisions and choices and access the supports they need to live the life they choose.[13] By contrast, the committee has heard that the role of the LACs had diverged from this framework, with different and conflicting functions operating to the detriment of participants' ability to exercise choice and control.

5.17Queenslanders with Disability Network (QDN) shared that its members were generally frustrated with LACs' roles being poorly defined, with some individuals lacking the skills necessary to meet the needs of participants, and LACs increasingly becoming 'inaccessible and unresponsive'. As a result, QDN noted that participants are 'missing out on critical services they urgently need.'[14]

5.18The South Australian Office of the Public Advocate (SA OPA) suggested that the role of the LAC had been 'adulterated' from its initial purpose of assisting people with disabilities to access mainstream and local community services, into more of a gatekeeping role.[15] The Allied Group similarly argued that the role of the LAC has been distorted and has instead become an 'extension of the NDIA functions with an emphasis on bureaucratic funding related activities such as planning (for funded supports) and plan reviews over other functions'.[16]

5.19Other submitters questioned whether LACs had the appropriate skill set to make appropriate assessments of need. For example, Allied Group further argued that Functional Capacity Assessments (FCA) should not be undertaken by LACs because they do not possess the necessary medical qualifications to determine 'reasonable and necessary' funded supports for inclusion in NDIS plans.[17] Vision Australia shared this view, describing FCAs as 'severely over-utilised' and 'costly, time consuming, and seldom result in improved outcomes for participants'.[18]

5.20MS Australia questioned whether apparent deficiencies in support provision by LACs were due either to a lack of appropriate skills and training, or being responsible for too large an area, or too many participants, to provide individual support.[19]

5.21The Independent Review also acknowledged difficulties regarding LACs, and noted that they had been diverted from their intended role.[20] The review recommended the creation of a new Navigator role, to 'act on behalf of the person with disability, at their direction, and be incentivised to build capacity, help the person meet their goals, facilitate choice and enable inclusion'.[21]

5.22Noting the review's recommendation that Navigators should not be agents of the NDIA, the committee will monitor the implementation of this change, and their effects on choice and control for participants.

Planners

5.23Evidence to multiple inquiries indicates that NDIA decision marking, especially in relation to planning, is not consistent. One reason is that different NDIA staff may give weight to evidence differently or take a different view on what constitutes 'reasonable and necessary supports'. The result is that the inconsistency impacts participants' ability to exercise choice and control.[22]

5.24The Public Interest Advocacy Centre (PIAC) identified several other factors that can contribute to inconsistent decisions, including:

the ability of the participant and their medical professionals to articulate their goals and needs in the language of the NDIS, rather than in language that reflects their true needs;

the participant's geographic location, with advocates stating that their experience shows inconsistent decision-making between different locations (revealing poor training practices within the NDIA);

the level of determination and endurance of the participant, their family and their advocates in pushing for the supports they consider necessary;

whether the participant had the support of an independent advocate; and

whether a person's local Member of Parliament was involved and advocating on a participant's behalf.[23]

5.25Disability Advocacy NSW contended that funding levels in annual individual plans could be entirely dependent on who conducted the plan review, and as a result, 'people are left with little choice but to go without services, accept subpar services or they must travel vast distances to attend appointments'.[24]

5.26Similarly, the Australian Lawyers Alliance (ALA) commented that differing interpretations of NDIS legislation and guidelines can lead to an inconsistent application of the rules and different outcomes 'depending on who is making the decision at any point in time'.[25]

5.27In one example, AEIOU Foundation reported a situation where 'two children with similar support needs receive significantly different funding plans'. The Australian Association of Psychologists Inc. (AAPi) recounted another circumstance where, between two children with similar needs, one received $28000 per year and the other received only $9000 per year.[26]

5.28QDN submitted that while participants felt that 'the quality of their plan has varied depending on the skills, experience and empathy of the planner' other concerns arose when participants had to deal with multiple planners who did not appear to have access to detailed records. [27]

5.29The NDIS Review acknowledged concerns regarding consistency in decision making and made extensive recommendations for reform.[28] The committee will continue to review the implementation of these changes as part of its ongoing oversight role.

Accommodation supports

5.30The committee heard serious concerns that participants in 'Group Homes' or Specialist Disability Accommodation (SDA) have a limited ability to exercise choice and control within that housing arrangement. A further concern is that the NDIA is not supporting all participants to exercise choice and control in relation to where and with whom they live with.[29]

5.31Allied Group described the difficulty that many participants experience in securing appropriate, safe and secure housing:

Access to appropriate housing continues to be extremely difficult, and there continues to be substantial unaddressed housing need. Supported Independent Living (SIL), Independent Living Options (ILO) and Specialist Disability Accommodation (SDA) are currently notoriously difficult to have funded in participant's plans, even when there is strong evidence of need and eligibility.[30]

5.32Choice about who participants live with includes the choice to live alone. The committee has heard that some participants have struggled to secure appropriate supports to live on their own or with their families. To address this challenge, QDN recommended the NDIA ensure that housing models include separation of housing and support and that supported disability accommodation (SDA), delivers choice of living arrangements and not just shared living.[31]

5.33Choice and control in this context includes, of course, funding in the NDIS plan. However, it also depends upon the availability of appropriate housing. This can be challenging, particularly in regional areas. The Summer Foundation recommended that the NDIA provide market stewardship for SDA, to ensure that the market is robust, diverse and innovative. They suggested that, without adequate market stewardship, the SDA market was at risk of collapse, threatening the existence of quality, purpose-built housing for people with disability.[32]

5.34The Independent Review made a number of recommendations regarding housing in its Recommendations 8 and 9. These recommendations are targeted at making housing supports fair, consistent and sustainable, and allowing participants to exercise genuine choice and control.[33]

5.35The committee supports these recommendations and will continue to monitor their implementation as part of its oversight role.

First Nations and CALD people with disability

5.36First Nations people and people from culturally and linguistically diverse backgrounds are distinct groups, each with their own cultural needs, understandings of disability, and experience of marginalisation in Australian society.

5.37Dr George Taleporos, a member of the NDIS Independent Advisory Council, warned of the difficulties that First Nations and CALD participants experience in choosing culturally appropriate service providers:

The consequences are especially serious for people with disabilities in regional and remote areas and marginalised communities. It is already the case that people's cultural background, interests and culture are often not reflected in available workers. This is widely recognised for marginalised groups including First Nations people, Culturally and Linguistically Diverse communities...[34]

First Nations people with disability

5.38Choice and control for First Nations people with disability is impacted by factors including cultural safety and difficulty in accessing services in regional and remote areas. For example, the First Peoples Disability Network (FPDN) noted that:

First People with disability and their families are amongst the most seriously disadvantaged and disempowered members of the Australian community; the systemic and intergenerational trauma experienced through being a part of both the Aboriginal and Torres Strait Islander Community and Disability Community means that First Nations people with disability face double disadvantage in areas such as health, employment, education and engagement in various services. Once a First Nations person with disability engages with these systems, they then face double disadvantage when navigating it. Often, First Nations people are unsupported to understand these systems, and have no choice and control over the outcomes of these engagements because of this lack of support.[35]

5.39AAPi submitted that, for many First Nations people, the NDIS was too complex to navigate, and that:

They either do not have services that are operating in these areas, or the NDIS focuses on a medical and individualistic model that is not culturally appropriate and they do not understand. Most give up before an application is even made.[36]

5.40Queensland Advocacy for Inclusion suggested that First Nations people may not have culturally equivalent words for 'disability' and that the task of gathering evidence to describe their disability to the NDIA could be additionally challenging.[37]

Regional and remote areas

5.41Although most First Nations people are more likely to live in urban and regional areas than in remote areas, they are more likely to live in remote areas than other Australians.[38]

5.42First Nations people comprise 30 per cent of the Northern Territory's population, almost 77 per cent of whom live in remote or very remote areas. The Northern Territory Public Guardian and Trustee (NT PGT) told the committee, as part of its inquiry into the Capability and Culture of the NDIA, that such 'asmall population spread across vast distances' poses significant challenges to both private and government service delivery. The NT PGT noted that it continues to observe:

… a high level of represented persons that identify as Aboriginal experiencing significant difficulties in receiving appropriate support services, including health care and NDIS supports and services in remote communities necessitating a relocation to regional centres resulting in a disconnect from country and culture, which is an essential element of Aboriginal life.[39]

5.43Kin Advocacy submitted that many of their Aboriginal clients in the WestKimberley and Pilbara regions would only engage with the NDIA if they had the support of an advocate. Kimberly region staff of Kin Advocacy reported that some NDIA staff do not demonstrate understanding of how to engage with Aboriginal clients. Whilst there are Remote Community Connectors to assist with NDIS access, there are often periods of time when staff are not available in the community.[40]

5.44As discussed in the previous chapter, the committee acknowledges the agency's recent work in launching a new NDIS Aboriginal and Torres Strait Islander Strategy and establishing a First Nations Advisory Council. The committee awaits future reporting on the participation of First Nations people in the NDIS, and hopes that choice and control for this cohort of participants improves.

Culturally and linguistically diverse (CALD) people with disability

5.45CASS Care submitted that some NDIA frontline staff do not fully demonstrate an understanding of CALD participants' and carers' cultural context which, nor respond appropriately to their cultural needs.[41]

5.46Kin Advocacy suggested that the NDIA has not demonstrated a commitment to improving how CALD people are treated through its structure, policies and culture, and identified issues including:

inaccessible communication and engagement due to inadequate staff numbers and high staff turnover;

over-reliance on call centres;

no clear policies on language services and when to engage accredited interpreters;

last-minute cancellation of interpreting services;

no clear demonstration of cultural competency training or guidelines on working with ethnolinguistically diverse groups; and

difficulty in finding information about the NDIS and service providers that is CALD-specific, accessible, and easy to understand.[42]

5.47 AMPARO Advocacy (AMPARO) discussed its experience of receiving state and federal funding to undertake outreach to provide information about the NDIS and assist with access and participation in the scheme. AMPARO noted that funding was limited and 'unable to adequately address the unmet need of people from CALD backgrounds with disability and their families to have equitable access to the NDIS'.[43]

5.48AMPARO also noted several additional challenges for CALD NDIS participants, including:

Inadequate support to connect to culturally competent, safe NDIS providers that can deliver quality services. They are often linked to poor NDIS providers, including support coordination services.

A major shortage of skilled, experienced and culturally competent staff across all areas.

Participants being asked to sign service agreements, even when interpreters have not been provided and they do not understand what they are signing.

Services overcharging through poor financial management or intentional fraud or ceasing involvement when the money runs out.[44]

5.49People with Disabilities WA suggested that language was not the only barrier faced by CALD people with disability. In its experience, many CALD participants came from cultures that prioritised deference to authority. These participants were therefore afraid that if they were to disagree with NDIA officials, they would be at risk of losing supports.[45]

5.50Difficulty in finding information in their own language, or finding NDIA staff with the right cultural competency, and other cultural barriers in interacting with government officials therefore inhibit the exercise of choice and control by people from CALD backgrounds.

5.51The Independent Review noted that challenges in navigating the NDIS were compounded for CALD participants, who are routinely subject to decisions being made without recognition and understanding of their culturally specific concepts of care, disability and community obligations.[46]

Role of the committee

5.52The committee recognises that rights of people with disability to exercise choice and control in their lives. This includes what supports they receive and how those supports are delivered, as well as where and with whom they live.

5.53The government and NDIA have made public commitments to realise the objects of the NDIS Act, namely that choice and control for participants is essential to the delivery and administration of the NDIS. However, as discussed above, there is still work to be done in the practical realisation of these commitments.

5.54The committee will continue to monitor the government's implementation of improvements to the NDIS, including NDIA staffing and training, NDIS plan funding structures, and access to appropriate accommodation and living arrangements. The committee also remains committed to scrutinising the performance of the NDIS for all participants, while acknowledging the additional challenges faced by First Nations and CALD participants.

Footnotes

[1]National Disability Insurance Scheme Act 2013, para. 3(1)(a) and (e). See also Productivity Commission, Disability Care and Support, Volume 1, 2011, p. 30.

[2]National Disability Insurance Agency, Plan budget and rules, ndis.gov.au/participants/creating-your-plan/plan-budget-and-rules (accessed 28 January 2024).

[3]National Disability Insurance Agency, Plan budget and rules, ndis.gov.au/participants/creating-your-plan/plan-budget-and-rules (accessed 28 January 2024).

[4]National Disability Insurance Agency, Support budgets in your plan, ndis.gov.au/participants/using-your-plan/managing-your-plan/support-budgets-your-plan (accessed 28 January 2024).

[5]NDIS Review, Final Report, pp.93–94.

[6]ACT Government, Submission 91, Inquiry into the Capability and Culture of the NDIA, p. 8.

[7]Ms Julie Acton, Submission 50, p. 1.

[8]National Disability Insurance Agency, Support budgets in your plan, ndis.gov.au/participants/using-your-plan/managing-your-plan/support-budgets-your-plan (accessed 28 January 2024).

[9]National Assistive Technology Alliance, Submission 1, p. 4-5.

[10]Commonwealth of Australia, Budget Measures: Budget Paper No. 2 2023–24, p. 198.

[11]Joint Standing Committee on the NDIS, Capability and Culture of the NDIA, Final Report, p. ix.

[12]Commonwealth of Australia, Budget Measures: Budget Paper No. 2 2023–24, pp. 197–198; and National Disability Insurance Agency, Workforce capability, ndis.gov.au/community/have-your-say/co-designing-reform/workforce-capability (accessed 9February2024).

[13]National Disability Insurance Agency, Local area coordination partners, ndis.gov.au/understanding/what-ndis/whos-delivering-ndis/local-area-coordination-partners (accessed 28January 2024).

[14]Queenslanders with Disability Network, Submission 114, Inquiry into the Capability and Culture of the NDIA, p. 10; see also Eastern Access Community Health, Submission 37, p. 3; JFA Purple Orange, Submission 6, Attachment 1.

[15]SA Office of the Public Advocate, Submission 42, p. 26.

[16]Allied Group, Submission 3, p. 3.

[17]Allied Group, Submission 3, p. 2.

[18]Vision Australia, Submission 28, p. 1.

[19]MS Australia, Submission 26, p. 6.

[20]NDIS Review, Final Report, p. 98.

[21]NDIS Review, Final Report, p. 101.

[22]Public Interest Advocacy Centre, Submission 29, Inquiry into the Capability and Culture of the NDIA, p. 9.

[23]Public Interest Advocacy Centre, Submission 29, Inquiry into the Capability and Culture of the NDIA, p. 9.

[24]Disability Advocacy NSW, Submission 5, pp. 6, 8.

[25]Australian Lawyers Alliance, Submission 100, p. 8. See also Australian Lawyers Alliance, Submission 100, Inquiry into the Capability and Culture of the NDIA, p.6.

[26]Australian Association of Psychologists Inc., Submission 122, Inquiry into the Capability and Culture of the NDIA, [p. 5].

[27]Queenslanders with Disability Network, Submission 114, Inquiry into the Capability and Culture of the NDIA, pp. 6-7.

[28]NDIS Review, Final Report, p. 6.

[29]Insert examples

[30]Allied Group, Submission 3, p. 3.

[31]Queenslanders with Disability Network, Submission 114, Inquiry into the Capability and Culture of the NDIA, [p.4].

[32]Summer Foundation, Supplementary Submission 34.1, Inquiry into the Capability and Culture of the NDIA, p. 10.

[33]NDIS Review, Final Report, pp. 9–10.

[34]Dr George Taleporos, Submission 21, p. [5].

[35]First Peoples Disability Network, Submission 183, Inquiry into the Capability and Culture of the NDIA, [p. 1].

[36]Australian Association of Psychologists, Submission 25, p. 7.

[37]Queensland Advocacy for Inclusion, Submission 26, Inquiry into the Capability and Culture of the NDIA, p. 5.

[38]Australian Institute of Health and Welfare, Profile of First Nations people, aihw.gov.au/reports/australias-welfare/profile-of-indigenous-australians, (accessed30January2024).

[39]Northern Territory Public Guardian and Trustee, Submission 115, Inquiry into the Capability and Culture of the NDIA, p. 3.

[40]Kin Advocacy, Submission 90, Inquiry into the Capability and Culture of the NDIA, [p. 4].

[41]CASS Care, Submission 99, Inquiry into the Capability and Culture of the NDIA, p. 3.

[42]Kin Advocacy, Submission 90, Inquiry into the Capability and Culture of the NDIA, [p. 4].

[43]AMPARO Advocacy, Submission 178, Inquiry into the Capability and Culture of the NDIA, p. 2.

[44]AMPARO Advocacy, Submission 178, Inquiry into the Capability and Culture of the NDIA, p. 4.

[45]People with Disabilities WA, Submission 120, Inquiry into the Capability and Culture of the NDIA, p.19.

[46]NDIS Review, Final Report, p. 27.