General issues around implementation and performance of the National Disability Insurance Scheme

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31 October 2021

Committee Secretariat

Joint Standing Committee on the National Disability Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

By email: ndis.sen@aph.gov.au

Dear Committee Secretariat

**General issues around implementation and performance of the National Disability Insurance

Scheme | Current Scheme Implementation and Forecasting for the NDIS**

Thank you for the opportunity to provide feedback on issues related to implementation, forecasting

and performance of the National Disability Insurance Scheme (the NDIS). Aged and Disability

Advocacy Australia (ADA) has considered the terms of the Committee’s inquiries into the general

implementation and performance of the NDIS, as well as the terms of reference provided in relation

to forecasting needs (the Inquiries). As the issues related to each of these inquiries intersect, we

seek to provide feedback to the Inquiries in this correspondence. ADA appreciates being consulted

on the important issues considered by the Inquiries.

About ADA Australia

ADA is a not for profit, independent, community-based advocacy and education service with nearly

30 years’ experience in informing, supporting, representing and advocating in the interests of older

people, and persons with disability in Queensland.

ADA also provides legal advocacy through ADA Law, a community legal centre and a division of ADA.

ADA Law provides specialized legal advice to older people and people with disability, including those

living with cognitive impairments or questioned capacity, on issues associated with human rights,

elder abuse, and health and disability legal issues related to decision-making.

Advocacy for persons with disability

ADA provides information, assistance and individual advocacy to people with disability who are

experiencing issues with abuse, neglect and discrimination as well as to those requiring support to

access or interact with systems and support services. In relation to the NDIS, we support clients who

are experiencing difficulty with gaining access to the scheme, accessing supports, planning, service

delivery and reviews.

The NDIS is a critical social program and a key tool in the funding and delivery of disability services.

However, there are ongoing concerns in relation to its operation, procedural fairness, transparency

and consistency in decision-making, and the impacts of these upon the scheme’s ability to provide

Australians with disability with equal opportunity for community participation, choice and control, in

accordance with the requirements of the National Disability Insurance Scheme Act 2013 (the Act).

Our advocates report that clients with disability regularly encounter significant barriers when seeking

access to the scheme and in dealing with the National Disability Insurance Agency (the NDIA), usually

associated with undertaking a review of approved support services or negotiating a change in

circumstances. The issues raised demonstrate a need for cultural reform, to ensure that the NDIA

and delegated arms reflect the principles and objectives of the Act.

General issues around implementation and performance of the NDIS

Access, communication and eligibility criteria

ADA advocates regularly assist persons with disability who seek to access the NDIS. Clients

consistently describe experiencing confusion, distress and prolonged delays when engaging with the

NDIA. Whilst the NDIS website includes useful accessibility options to assist a wide range of

stakeholders and possible applicants in obtaining general information about the NDIS, our clients

regularly face communication obstacles and process inflexibility when engaging the NDIA in relation

to scheme application or plan review. Examples of this include NDIA officers only communicating

with a client using means which are inaccessible to the individual, such as attempting to use the

telephone for a person who is hearing impaired despite requests to communicate via email. This

inflexibility leads to the exclusion of persons from the scheme who meet the eligibility criteria set out

in the Act.

Limiting means of communication is a breach of Article 21 of the Convention on the Rights of Persons

with Disabilities (the CRPD), which confers a positive obligation on the Australian government and its

agencies to ensure that persons with disabilities enjoy the freedom to seek, receive and impart

information on an equal basis with others, through all forms of communication of their choice.

The need for operational changes to improve communications by the NDIA and the consequential

impact upon participant experience is well-known, recently described in the 2019 review by Mr David

Tune AO PSM (the Tune Review)¹ and acknowledged in the Australia government’s response to the

review.²

We note that some recommendations relating to improving communication by the NDIA were

agreed by the government, and others supported in principle. Whilst the implementation of some

recommended strategies is welcomed, such as additional funding to support people with disability

navigate the NDIS, uncertainty persists regarding the continuation of these services. Funding

provided for these measures is based upon short term delivery periods, despite an ongoing need for

assistance.

For example, ADA supports the introduction of the targeted outreach program to spread awareness

of the NDIS in Aboriginal and Torres Strait Islander communities. However this program is limited in

its efficacy because it does not extend to assisting an individual navigate the application process – as

recommended by the Tune Review. Rather, the expectation of the program is that an individual who

is made aware of the scheme via the outreach program will then seek access having independently


¹ Tune, David, Review of the National Disability Insurance Scheme Act 2013: Removing red tape and implementing the NDIS Participant Service Guarantee, December 2019 < https://www.dss.gov.au/sites/default/files/documents/01_2020/ndis-act- review-final-accessibility-and-prepared-publishing1.pdf>.

² Australian Government response to the 2019 Review of the National Disability Insurance Scheme Act 2013 report, August 2020, < https://www.dss.gov.au/sites/default/files/documents/08_2020/australian-government-response-tune-review-28- august-2020-release.pdf>.

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prepared their application. Our advocates report that this is rarely the outcome for persons in

community. We also note that the targeted outreach program is only funded to operate for relatively

short periods in each identified area. For example, phase 2 relating to the Townsville LGA,

Rockhampton, Bundaberg, Toowoomba and west to the borders was funded to operate between

September 2020 and August 2021 only. Phase 3 covers a significant number of geographically diverse

communities located across a very large land area, including Mackay, Burdekin, Mount Isa, the Gulf,

Cairns, Cape York and Torres Strait, and is funded for the period of March 2021 to February 2022.

The permitted timeframes allocated to each region are insufficient, and do not make adequate

provision for the time it takes to ingratiate and build trust in community. Doing so is particularly

important for government agencies, for whom there remains significant wariness and distrust

amongst Aboriginal and Torres Strait Islander communities. This is a key reason why referrals

through this program have not reached expected levels.

These efforts alone do not deliver sufficient assistance to aid eligible persons in these areas gaining

access to the scheme, and Aboriginal and Torres Strait Islander persons (particularly those in remote

areas) continue to be at a greater disadvantage in respect of opportunity to access the NDIS. The

numbers of Aboriginal and Torres Strait Islander NDIS participants will continue to be under-

representative of disability rates in these communities if initiatives such as the targeted outreach

program are not continued and expanded.

Generally, information resources established by the NDIA for Aboriginal and Torres Strait Islander

persons with disability are useful. However, there are concerns about the degree of cultural

understanding and competency held by the agency and demonstrated by its officers, delegates, and

within its processes.

There is an urgent need for Aboriginal and Torres Strait Islander NDIA planners and delegates in

community, to improve cultural competency and assist eligible Aboriginal and Torres Strait Islander

persons with disability in accessing the scheme and necessary support services. For many NDIS

participants, undergoing a yearly review is a difficult and draining process. The negative impacts of

this are amplified for Aboriginal and Torres Strait Islander persons with disability who are exposed to

the NDIA’s lack of cultural competency. We suggest the establishment of a dedicated team within

the NDIA, including identified positions for Aboriginal and Torres Strait Islander staff who can identify

how internal processes can be adapted to provide cultural safety. This would improve Aboriginal and

Torres Strait Islander persons’ engagement with the scheme.

File management by the NDIA

ADA acknowledges that the NDIA has sought to introduce measures aimed at service enhancements

and participant experience, for example, through the National Information Program, the Individual

Capacity Building (ICB) Program, and the Information, Linkages and Capacity Building Program. ADA

supports the intention of these programs, which aim to deliver longer term capacity building and

scheme understanding for individuals, community and support services.

In the meantime, significant issues regarding NDIA communication and management of files

continues to impact individuals across all aspects of the scheme. This includes applicants who are

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seeking a review of a decision about NDIS access, participants seeking a plan review, and general

communication with participants who have requested information or clarity about their plan.

The NDIA’s obligation to provide relevant and accessible information, and to ensure that persons

with disabilities can exercise the right to freedom to seek, receive and impart information and ideas

on an equal basis as per Australia’s obligations under Article 21 of the CRPD, extends not only to the

availability of accessible general information (such as the information published on the NDIS website)

but also to reports, information, file notes and management of individuals. The obligation includes

implementing a communication strategy with each individual that uses contact methods that are

effective and accessible to the person with disability.

In our experience, this is seldom the reality. File transfer of an individual’s active matter to a new

NDIA officer is a regular occurrence, and upon this transfer it is commonplace for the individual to be

advised that the new NDIA contact does not have access to the information, reports or evidence that

has already been provided, or has not yet had the opportunity to read this evidence. The same

frequently occurs when carriage of a matter is transferred by the NDIA to an external solicitor to

represent the agency before the Administrative Appeals Tribunal (the AAT).

The result is further delay to resolution of the issue and increased confusion, distress and anxiety for

an individual. Being compelled to repeatedly tell your story of disability and hardship can be very

traumatising – particularly when an individual has already gone to significant effort to obtain and

provide information for the NDIA, often a complex and costly process in itself. For persons with

psychosocial disabilities who are subjected to delays, miscommunication and NDIA requests for

information which has already been provided, can have the effect of exacerbating the symptoms of

their disability.

Lack of understanding by the agency to appreciate and accommodate individual circumstances

continues to be a concern. For example, a recent client and NDIS participant who has experienced

domestic violence was sent an email by the NDIS advising that her request had been rejected.

Participants who are affected by domestic violence are managed by the NDIA’s Restricted Access

team, comprised of specialist staff who operate in accordance with higher level privacy protections.

The email received by our client was sent from a generic email address and appeared to be a

template response. The client attempted to call the NDIA to seek clarification, expecting to be

transferred to the NDIA Restricted Access team. However, in order to be transferred the client was

adsised that she needed to provide the NDIA officer on the general enquiry line with detailed

information – including her full name, address, NDIS participant number and a reason why she

should be put through.

The presumed motive for this process is well-founded: to ensure that only approved persons are

transferred to the Restricted Access team. However in practice it fails to recognize that persons who

have experienced domestic violence are likely to be deeply concerned about sharing identifying

details – particularly their address – with NDIA officers who are not part of the Restricted Access

team. This interaction, and the fear associated with providing her residential address, caused the

client considerable distress. Further education for general NDIA staff about the importance of

confidentiality, and how to appropriately have these discussions with a concerned individual would

be beneficial. Alternative processes may also be considered, such as requiring only the NDIS

participant number by the general enquiry line before transferring the participant to the Restricted

Access team, who can then undertake further identity screening before providing information to the

caller.

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Subordinate legislation, guidelines and NDIA policy

Part 2 of the Act sets out the objects and principles underpinning the operation of the scheme.

We note the independent review undertaken by Ernst & Young in 2015 in accordance with section

208 of the Act. In a report tendered to the government, the review recommended legislative

amendments to sections 4, 5 and 17A of the Act. ADA supports the review’s recommendation to

amend these sections, which are necessary to ensure that these sections reflect the inclusive

intention of the scheme.

The objects, general and guiding principles of the Act set out in this Part are the basis upon which all

subordinate legislation relating to the scheme must be grounded.

It is difficult to assess if this is the case, as guidance materials which appear to be relied on by the

NDIA to assist decision-making are often not publicly available. It is our strong recommendation that

comprehensive public consultation involving key stakeholders should inform development of all

guidelines and policies associated with the scheme. This would assist in ensuring that these

documents align with the primary Act and are fit for purpose. It would also invite public engagement

with the NDIA about the scheme, building the relationship with the community and improving

understanding and transparency.

Examples of inadequate understanding of the legislation or misinterpretation of the subordinate

legislation by the NDIA or its delegates are common. For example, NDIA officers attempting to draw

inferences from the Operational Guideline to support decisions, though no corresponding authority

can be found in the primary Act.

Effective communication, including publication of factors considered by the NDIA when determining

whether an applicant is likely to meet the eligibility criteria as set out under the Act, is urgently

required. Doing so will not only clarify the assessment process for NDIA staff, but it will also allow

persons with disability, carers and advocates to better self-assess the prospects of success for a

person who is weighing up making an application or considering plan review. Application and review

processes are complex, involved and exhausting, and receiving notice of rejection is distressing. This

may be avoided in some cases. Publication of guidance material relating to eligibility and review

assessments and criteria will also drive greater consistency in decision-making by NDIA officers.

ADA strongly supports recommendations 1 – 4 made by the Public Interest Advocacy Centre in its

submission to this Committee dated 13 July 2020, which relate to the publication of NDIA guidelines

and settlement outcomes for matters before the AAT.³ Publication is in the interests of transparency

and will increase community understanding and confidence in the scheme.


³ Joint Standing Committee on the National Disability Insurance Scheme, Inquiry: General Issues around the Implementation and Performance of the NDIS, Public Interest Advocacy Center, Submission 33, 13 July 2020, < https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/GeneralIssues /Submissions>.

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Failure to appropriately manage the application/review process and act in accordance with the

general principles

ADA’s advocates report numerous examples in which an application was rejected based on what

amounts to administrative error, rather than the application lacking substance. This is evidenced by

examples where an individual has received a rejection decision which appears to accept the reports

tendered by medical specialists, but suggest that the evidence does not use the correct language or

terminology preferred by the NDIA and therefore, cannot be approved.

Significant administrative work, organisation and cost is often associated with making an application.

This is usually undertaken by the person with disability, their families and carers. For persons with

complex or psychosocial disabilities, the reports and information provided in the course of review

(often additional to that provided in the original application, at the NDIA’s request) are costly and

extensive.

The considerable power and resources imbalance between applicants and the NDIA is well-known. A

reasonable degree of mistake and administrative oversight in an individual’s application is to be

expected, and processes should be implemented by the NDIA to determine:

  • if the error/oversight is substantial enough to necessitate correction; or
  • the application can otherwise be approved having regard to the balance of the evidence provided, in accordance with the principles of the Act.

This approach would reduce the significant number of NDIA decisions which are overturned or

amended by the AAT in favour of the applicant, as well as reducing distress and delay caused to

individuals, and NDIA expenditure on legal fees. We note the NDIA’s testimony to the Senate

Community Affairs Legislation Committee on 29 October 2020 that the agency spent over $29 million

on external legal fees in the 2019-2020 financial year. $13.4 million of that amount was spent on

matters involving the AAT.⁴ The NDIA has acknowledged that 65% of applications made to the AAT

lead to a new decision or a new settlement of some form. The remaining 35% of applications are

withdrawn, or the AAT finds that the decision stands.⁵

Evidence and time frames

Many clients with psychosocial disabilities struggle to provide enough evidence to support an

application.

We note the introduction of the National Disability Insurance Scheme Amendment (Participant

Service Guarantee and Other Measures) Bill 2021 (the Bill). ADA will provide detailed feedback about

the Bill in a separate submission. For the purpose of this inquiry, ADA supports making amendments

to the Act which are intended to improve flexibility and certainty for applicants. This includes

clarification of the eligibility criteria for persons with psychosocial disability, and recognition that


⁴ Commonwealth of Australia, Senate Community Affairs Legislation Committee, Estimates, 29 October 2020, <https://parlinfo.aph.gov.au/parlInfo/download/committees/estimate/1bad3d3e-80f8-498e-a93b- 585809f8dd26/toc_pdf/Community%20Affairs%20Legislation%20Committee_2020_10_29_8267_Official.pdf;fileType=appli cation%2Fpdf#search=%22committees/estimate/1bad3d3e-80f8-498e-a93b-585809f8dd26/0000%22>

⁵ Ibid, 40.

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disability of this kind can be fluctuating in nature. We hope that this will reduce the evidentiary

burden for many clients with psychosocial disability.

ADA also supports the Bill’s proposal to introduce timeframes by which the NDIA must advise an

applicant of a decision. However, these changes will only result in improved outcomes for persons

with disability if implemented in conjunction with other operational, communication and file

management advancements which are urgently required. For example, persons with psychosocial or

complex conditions often encounter significant delays in receiving a decision. Lengthy delays almost

always occur when a file is transferred between NDIA officers, or to external legal advisors. Evidence

previously submitted is unread, sometimes as a result of file transfer. Clients are then often advised

that their evidence is now too old, and they need to submit a more recent report. This is very

distressing and frustrating. For many people, obtaining a new report is impossible due to cost. The

application stalls or is rejected, and an individual is forced to make an application to the AAT if they

wish to proceed. Most people with disability and families are worn down by the application process

and feel intimidated and anxious about making an application to the Tribunal.

Quality and Safeguards Commission – registration process

Our advocates have observed that new providers with poor practices and understanding of disability

are enabled by the lack of adequate safeguards for plan and self-managed participants, who may

utilise providers that are not registered.

Registration is complex, lengthy and expensive, and often discouraging for new providers. However it

ensures that persons with disability are better supported, conflicts of interest are appropriately

managed, and critically, that the client’s safety is at the forefront.

Uncertainty of SDA and rental rights

A lack of clarity regarding rental rights exists in relation to specialist disability accommodation (SDA).

Legal rights and avenues for persons with disability differ depending on their location: for example in

Victoria, SDA residential agreements became part of the Residential Tenancies Act 1997 (Vic) in 2019,

providing a legislative framework for this specialist accommodation. Queensland has developed four

principles for inclusive communities in the Queensland Housing Strategy 2017-2027 - rights, control,

choice and inclusion. Whilst development of the principles is an important and welcome step, the

Queensland legislation governing residential tenancy agreements does not include specific provisions

about persons in SDAs.

This is a complex area that can be very difficult to navigate. Persons who require SDA housing already

face limited choices about where they can live, and a substantial power imbalance often exists

between landlord and tenant. For example an ADA client residing in an SDA experienced a sudden

increase in rental payments without reasonable explanation, placing them in a vulnerable position.

The NDIS Quality and Safety Commission (the NDIS Commission) considers this a rental payment

dispute and will not assist.

Whilst we appreciate the complexity and limitations of a dispute involving issues governed by both

federal and state laws, the current gap in assistance and necessary safeguards can leave persons in

an SDA in an exposed and vulnerable position.

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The federal government should engage with state and territory governments to consider if there

should be an intersection between the role of the NDIS Commission and state/territory rental laws,

and particularly, whether the NDIS Commission’s safeguarding procedures might be appropriately

utilised in this space.

Resistance of NDIA to support applicants’ accommodation choices

Our advocates report multiple examples of clients requiring assistance in dealing with the NDIA

regarding housing needs. Often, this occurs because the person with disability encounters resistance

from the agency in approving housing that meets their needs.

For example, an ADA client with severe psychosocial disability and in need of robust housing was

living in a supported independent living (SIL) arrangement that did not meet her needs. A section 100

review process was commenced, supported by a large team of allied health and housing support

professionals who all provided reports to evidence the application for an SDA. In spite of the

extensive evidence submitted, the NDIA planner decided that the client did not meet the criteria,

though no reasonable explanation was provided to support that finding. The client was extremely

distressed by the experience, worsening the symptoms of her disability and resulting in

hospitalisation for self-harm. The matter has since been referred to the AAT, which we hope will

correct the decision. Even if it is corrected, it will have been at significant mental, emotional, and

physical cost to the client and her family.

Oftentimes, the NDIA will refer to section 34(c) of the Act to suggest that there may be equivalent

alternative accommodations available at a lower cost, such as living in a SIL arrangement rather than

an SDA. This thinking often negates to consider other key principles of the Act: choice and control of

the individual, as well as the other requirements of section 34. It also identifies a misconception that

SDA costs equates to less value for money than the SIL model. For example, a SIL model with support

worker arrangements for 24/7 assistance of 3 residents may be significantly higher overall than an

SDA in a specialised building or complex with concierge support workers onsite, as required.

Current Scheme Implementation and Forecasting – response to terms of reference

The limited consultation period to provide the Committee feedback on the terms of reference does

not permit ADA to deliver a comprehensive response. We provide the following comments for your

consideration.

  • a. The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding, including:
    • i. the availability of support outside the NDIS for people with disability (e.g. community-based or ‘Tier 2’ supports), and
    • ii. the future of the Information, Linkages and Capacity Building grants program;

With respect to a(i) – the availability of supports outside the NDIS, and within it, is heavily

determined by an individual’s location and personal circumstances (including, for example,

educational and financial capacity of the person and/or their family).

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The Information, Linkages and Capacity Building grants program has been a helpful initiative for

support services to develop resources intended to build capacity and connection with individuals. We

are pleased to see funding for the Individual Capacity Building and Economic and Community

Participation streams will continue until 2023.

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

ADA considers that better integration between the NDIS and aged care, hospital and healthcare

systems, and education institutions is required. Our advocates regularly assist clients and carers

seeking to ensure NDIS support services can continue when a person with disability attends one of

these settings. Issues affecting support continuation are frequently encountered in schools and

hospitals.

For example, a recent ADA client was supporting a child with Autism Spectrum Disorder (ASD). As a

result of the child’s distressing behaviours, a home school program was implemented until learning

support from Autism Qld became available (approximately a 5 month wait list). The client’s request

for increased support worker input at home to assist with home school was rejected, with the agency

advising that home-schooling was both a ‘parental responsibility’ and a ‘Qld Education issue’, and

unrelated to the NDIS. As with housing, improved integration between the NDIS and state-based

education systems is required.

Similar gaps are experienced by NDIS participants who are hospitalised. An ADA client with Down

Syndrome and NDIS participant who requires assistance with eating and drinking was admitted to

hospital. Staff brought the man three meals a day, but the hospital would not provide any staff to

physically assist him with eating even though he was unable to do it himself. Upon advising the NDIA

about the issue, the client was advised that no funding will be used to support a person in hospital.

As a result, persons without family or friends who are able fill this gap are left in an impossible

situation, and hospital staff or NDIA support coordinators are forced to ‘break the rules’ to ensure

that basic needs are met.

  • 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;

We refer to issues raised above (see particularly pages 3 – 7). Intersecting challenges, including

access to specialists and ability to procure multiple reports or additional evidence when requested by

the agency interplay with the NDIA’s file management, communication and interpretation of

guidance material and subordinate legislation when making a decision.

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  • Invalid interpretation of the Act and/or supporting legislative framework, an applicant’s location, and inconsistent decision-making by the NDIA will all influence an applicant’s opportunity to receive equitable funding.

f. The measures intended to ensure the financial sustainability of the NDIS (e.g. governance, osight and administrative measures), including: i. the role of state and territory governments, and the Disability Reform Ministers Meetings, ii. the arrangements for providing actuarial and prudential advice about the scheme, and iii. | the way data, modelling, and forecasting is presented in public documents about the NDIS, (e.g. NDIS Quarterly Reports and Reports by the Scheme Actuary), and iv. measures to ensure transparency of data and information about the NDIS;

ADA supports a comprehensive and public consultation into the scheme’s financial sustainability, including a review of the NDIA’s spending model, the NDIA price guide, and reconciling the full costs associated with correction of incorrect decision-making (including NDIA labour costs associated with undertaking an internal review, as well any external legal fees).

Increased transparency is urgently needed to improve community confidence in the scheme. This should include publication of all data and information relied upon to support policy and process development.

Thank you again for the opportunity to comment. ADA would be pleased to further assist the Committee with its inquiry. Should you wish to discuss this submission, please do not hesitate to contact , Solicitor and Senior Policy and Research Officer on or via

Yours faithfully

Geoff Rowe Chief Executive Officer