Submission 87 — National Legal Aid — NDIS participant experience in rural, regional and remote Australia | External submission

National Legal Aid

NDIS participant experience in rural, regional and remote Australia

Submission to Joint Standing Committee on the NDIS

08 March 2024

National Legal Aid Secretariat

nla@legalaid.tas.gov.au      03 6236 3813     GPO Box 1422 Hobart TAS 700 I

Introduction

National Legal Aid (NLA) welcomes the opportunity to make a submission to the Joint Standing Committee on the National Disability Insurance Scheme inquiry into NDIS participant experience in rural, regional and remote Australia.

NLA brings together the practice experience of Australia’s eight state and territory legal aid commissions (LACs). Each LAC provides a wide range of services to people with disabilities, including legal advice, task assistance, legal advocacy and representation for people with disabilities seeking review of decisions of the National Disability Insurance Agency (NDIA) in relation to a person’s eligibility to start receiving a benefit under the National Disability Insurance Scheme (NDIS), or to appeal a decision which has adversely affected an existing NDIS plan or benefit. LACs also provide services to people with disability through Your Story Disability Legal Support which was initially established to help people share their stories with the Disability Royal Commission.

In the financial year 2022-2023 LACs provided more than 1.7 million legal services to people across the country. LACs are collectively the largest provider of legal services to people with disability in Australia. LAC services are delivered at courts and tribunals and from their head and branch offices across the nation, and by outreach including at correctional facilities, health facilities, community-based organisations and through health justice partnerships. Services include services to people with disability through Your Story Disability Legal Support, services to assist people in relation to the National Disability Insurance Scheme (NDIS), mental health advocacy and guardianship, disability discrimination, accessible community legal education, and services in the criminal, family, family violence and child protection justice systems.

NLA submission to JSC on NDIS – NDIS participant experience in rural, regional and remote Australia Page 2 of 15

Previous submissions on the operation of the NDIS

Our previous submissions about the NDIS include:

o The Disability Royal Commission Recommendations: Have your say – NLA submission to the Department of Social Services 12 January 2024.

o Disability Services and Inclusion Bill 2023 – NLA submission to the Department of Social Services, 18 August 2023.

o NDIS General Issues Inquiry – NLA submission to the Joint Standing Committee on the NDIS, June 2023.

o Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability - NLA submission to the Royal Commission, November 2022.

o Putting people first - Removing barriers for people with disability to access NDIS supports - NLA submission to the Review of the NDIS Act and the new NDIS Participant Service Guarantee, November 2019.

o Exposure Draft - National Disability Insurance Scheme Amendment (Participant Service

Guarantee and Other Measures) Bill 2021 - NLA submission to the Department of Social Services, October 2021.

o Realising choice and control through supported decision-making - Victoria Legal Aid submission on the NDIS Support for Decision Making Consultation, September 2021.

o Protecting people with disability in the forensic and criminal justice systems - Victoria Legal Aid submission to the Inquiry into the National Disability Insurance Scheme Quality and Safeguards Commission, June 2021.

o NDIS Consultation Paper: Planning Policy for Personalised Budgets and Plan Flexibility - NLA

submission to the National Disability Insurance Scheme, February 2021.

o NDIS Consultation Paper: Access and Eligibility Policy with independent assessments – NLA submission to the National Disability Insurance Scheme, February 2021.

o NDIS planning - NLA submission to Joint Standing Committee on the National Disability Insurance Scheme, September 2019.

o Inquiry into market readiness for provision of services under the NDIS - Legal Aid NSW submission to the Joint Standing Committee on the National Disability Insurance Scheme, March 2018.

o NDIS Thin Markets Project - Victoria Legal Aid submission to Department of Social Services and the National Disability Insurance Agency’s NDIS Thin Markets Project, June 2019.

NLA submission to JSC on NDIS – NDIS participant experience in rural, regional and remote Australia Page 3 of 15

Terms of Reference

a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews

LACs have the opportunity to provide advice, assistance and representation to applicants and participants at different stages of the NDIS, including applications for access and in relation to the reasonable and necessary supports to be included in a plan. Through this work, LACs across the country have been able to observe the unique challenges that participants and prospective participants face living in rural, regional and remote areas, with respect to the Scheme.

NLA refers to our previous submissions in relation to the NDIS, noting particularly our submission to the Joint Standing Committee on the NDIS General Issues Inquiry at pages 8, and 11 to 12 in relation to access.

By way of illustration, without purporting to provide an exhaustive list of all the issues faced by people living in remote, rural and regional (RRR) communities at all stages of the NDIS, NLA notes the following issues faced by our clients:

Prospective participants struggle to obtain evidence required to establish that they meet the access criteria, due to:

a. Lack of specialists/doctors/general practitioners/allied health professionals in rural, regional and remote communities,

b. Where there are specialists/doctors/general practitioners/allied health professionals, the availability and delays associated with accessing appointments in those communities.

c. Difficulty maintaining continuity of professional care due to turnover of rural health care workers,

d. Delays and limitations associated with accessing allied health services through the public health system, and

e. Specialists/doctors/general practitioners/allied health professionals having limited understanding of the NDIS and information to be provided to meet relevant criteria under the legislation and rules.

In relation to both access and reasonable supports criteria, prospective participants and participants living in rural, regional and remote communities experience barriers as a result of the practical and financial burden of travel to major cities, or regional centres, to obtain evidence from specialists/doctors/general practitioners/allied health professionals.
In relation to both access and reasonable supports criteria, prospective participants and participants living in rural, regional and remote communities experience barriers caused by the financial burdening of obtaining evidence from specialists/doctors/general practitioners/allied health professionals for participants where funding is not available through the NDIS.
The expectation of the NDIA regarding the detail to be provided in reports for each planning cycle, and the costs to participants and prospective participants associated with meeting that expectation.

NLA submission to JSC on NDIS – NDIS participant experience in rural, regional and remote Australia Page 4 of 15

NDIS Plan funding failing to take into account the practical reality of the community in which participants reside.
NDIS Plan funds being reduced/removed because the participant has not spent the allocated support funding in circumstances where they have been unable to locate and access that support in their area.

With respect to points 5 & 6 LACs regularly see participants appealing decisions regarding support funding in their NDIS plans because:

the funded support is not available, cannot be accessed or does not exist in their community, or
the funded support is unusable given the characteristics of the participant’s environment. For example:

a. funding for Supported Independent Living (SIL) at a ratio of 1:3, where such accommodation is not available and the highest available ratio in the participant’s area is SIL on a 1:2 basis,

b. funding for community access supports and allied health therapies, where the travel time associated to access the support/therapies exceeds the total amount funded in the plan for the support thereby making the funded support inaccessible.

c. funding of Assistive Technology (AT) or mobility aids that are inappropriate and/or unsuitable for the client’s home environment, for example, provision of funding for a wheelchair or mobility scooter that is not appropriate for the terrain in which the client resides.

Illustrations of particular issues

Travel for services

Case Study

Legal Aid Western Australia (LAWA) assisted a client in a town five hours drive away of Perth. The NDIA asked him to provide a report from a pain specialist, but the nearest specialist who could provide that was based in Perth. Because of his pain levels, he could not drive for five hours to reach Perth, so he could only get there by air, and he could not afford the airfare as he was not working. When LAWA spoke to him, his NDIS appeal at the AAT had stalled for over a year because he was not able to afford to travel to see the specialist to obtain the evidence the NDIA was requesting. LAWA gave the client some advice about asking the NDIA to fund the evidence and the travel, and he subsequently obtained access to the NDIS, but it was an arduous process.

NLA is concerned that many people in the situation described above would not have persisted with their claim, particularly if they had not received assistance, and would accordingly have withdrawn their application when they could not get to the services to provide the evidence the NDIA was asking for.

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Concerns are particularly raised by LAC staff who assist people who live on islands or in very remote and sparsely populated areas. These people usually need to travel for assessment and report which is often not possible or affordable. In addition, the support that they need can also often only be delivered on a fly in/fly out basis which may mean therapy and support is less than what has been recommended. Legal Aid NT (LANT) assists people who live in places as remote as the Tiwi Islands, Goulburn Islands, Groote Eylandt and the Barkly Region where there are no supports within thousands of kilometers. The NT and Tasmania experience a very thin market generally.

Lack of health specialists and access to the NDIS – Example of consequences

In the NT, the lack of access to general practitioners and medical and allied health specialists severely limits timely access to the NDIS. In some cases, wait lists of more than 2 years exist for young people to access assessments for conditions such as fetal alcohol syndrome (FASD) and intellectual disabilities. In turn this can result in some young people not accessing the supports that they need to break cycles of offending. Whilst not necessarily in rural, regional and remote areas, people in custody in youth detention or prison, are often not able to access/receive the services that they need. If assessments are not undertaken in the custodial setting, appropriate supports cannot be sought in preparation for release and robust pre-release plans cannot be developed. For many prisoners from remote areas of the NT, if assessments are not undertaken before release from custody, they can expect to face enormous challenges attempting to access assessments in community.

Access decision making and delays and effects

For prospective participants in rural, regional and remote areas, decisions to refuse access, and the time it can take to seek review of those decisions, can have significant practical consequences.

Case Study

Legal Aid NSW assisted a client living in a remote community in Western NSW. When she applied for access she was in hospital, unable to be discharged into the community to live with her family. Our client applied for access to the NDIS and the NDIA determined she did not meet the access requirements on the basis that her needs could be met by the palliative care system. Not only was the palliative care system not the correct system for our client to access supports to return to the community, practically the closest available palliative care service to her was in Adelaide. The decision would mean either remaining in hospital or moving far away from her family and informal support networks. She remained in hospital for 6 months while she sought review of the decision. Legal Aid NSW assisted our client in the AAT to have the decision set aside, become a participant in the NDIS and return to her family and local community.

The following finding of the Chairs of the Independent Review of the National Disability Insurance Scheme, are consistent with what LAC’s have observed through their provision of services:

a. In their interim What we have heard report (NDIS Review) Report on page 4, “For many participants, especially in remote areas, the limited availability or poor quality of services means that in practice they do not really have choice or control over their supports.”

b. In the NDIS Review: Final Report at page 82-83: NLA submission to JSC on NDIS – NDIS participant experience in rural, regional and remote Australia Page 6 of 15

“Many people with disability who haven’t applied or had an unsuccessful application have indicated this is because “getting supporting documentation for the access request was too challenging”. Decisions on access are too often being influenced by the amount or type of supporting evidence provided to the NDIA, rather than need. This favours better resourced applicants, those better equipped to navigate a complex process and those with strong advocates to navigate on their behalf.“

NLA is supportive of the Federal Government fully implementing all action items of Recommendation 13 and 14 set out in the Final Review Report of the NDIS Review. Those recommended action items are as follows:

13.1 The Australian Government should undertake more active, evidence driven market monitoring to identify issues with access to quality supports early and take more timely and appropriate action.

13.2 The National Disability Insurance Agency should progressively roll-out provider panel arrangements for allied health supports in small and medium rural towns or where participants face persistent supply gaps.

13.3 The National Disability Insurance Agency should develop matching tools to support participants and Navigators to pool demand for supports.

13.4 All Australian governments through the Disability Reform Ministerial Council should agree and publish a provider of last resort policy to ensure participants have continued access to supports where markets fail.

14.1 The National Disability Insurance Agency, in partnership with First Nations representatives, communities, participants and relevant government agencies should progressively roll-out alternative commissioning arrangements for both First Nations communities and remote communities, starting as soon as possible.

NLA considers implementation of the above action items will provide improved outcomes for participants and prospective participants residing in rural, regional and remote communities.

b. the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants

NLA considers the lack of physical presence of the NDIA in some RRR communities results in disadvantage for participants and prospective participants in those communities.

“In community” and accessible offices are important in providing assistance to navigate the Scheme.

Participants who, due to the nature of their disability and/or personal financial circumstances, experience difficulties accessing the necessary technology to communicate with the NDIA remotely are therefore further disadvantaged.

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Particular communications issues

A significant number of LANT clients have hearing impairment and/or do not have English as a first language. Clients have reported that they have experienced difficulty with remote interactions with NDIA including where the interactions have been related to important events such as planning meetings about disability support needs and reviews.

LANT observes that the use of AVL where it occurs is preferable to phone as it assists clients with hearing impairments who are able to speech read. It is considered that there is room for improvement in relation to both the availability of AVL and operating in AVL environments with hearing impaired people, for example, training in relation to the delivery of speech and the importance of facing the camera. While outside the Terms of Reference it is noted that there is no AAT Registry in the NT, which means that nearly all Tribunal events are online with NDIA staff and legal representatives involved remotely.

While both urban and remote clients report issues with timely communications about the making of decisions including new plans, issues are exacerbated for remote clients where post can take a long time to reach people. It would appear at least in the NT that further consideration could be given to achieving earlier participant contact. Improved use of remote indigenous connectors and legal representatives where appropriate authorities exist and have been provided by the NDIA would likely assist.

In addition, the connections between the NDIA planning and appeals areas need to be strengthened. LACs have experience of circumstances where new plans have been made for a participant without notice whilst appeal proceedings related to that participant are on foot.

Otherwise, maximizing use of pathways to co-ordinate with other relevant departments, including State and Territory departments, would help to better serve rural regional and remote clients.

NLA is supportive of the Federal Government fully implementing all action items of Recommendation 4 set out in the Final Review Report of the NDIS Review. Those recommended action items are as follows:

4.1 The National Disability Insurance Agency, through the joint commissioning process described in Action 4.3, should be the lead commissioner of a local navigation function to help people with disability find supports in their community and make the best use of their funding.

4.2 The National Disability Insurance Agency, through the joint commissioning process described in Action 4.3, should be the lead commissioner of a Specialist Navigation function for participants who have more complex or specific needs that cannot be reasonably met by general navigation support.

4.3 The National Disability Insurance Agency should ideally adopt a joint commissioning approach to deliver local navigation support within a nationally consistent framework developed in partnership with other relevant Australian government and state and territory government agencies.

4.4 The National Disability Insurance Agency should design, test and implement the navigation function gradually, prioritizing continuity of support for participants and their families and a smooth transition for the workforce and market.

NLA submission to JSC on NDIS – NDIS participant experience in rural, regional and remote Australia Page 8 of 15

NLA emphasises that when implementing action item 4.4, care should be taken to ensure local navigation supports are available to be delivered in both major cities and RRR communities.

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The experience of LACs through their service delivery is consistent with the issues identified in Figure 10.

For example:

Clients and advocates from RRR locations regularly tell us that they cannot access the service providers or services that city participants have access to. The problem is both a non-existent or narrower choice of service providers (if they don’t like one provider, it

NLA submission to JSC on NDIS – NDIS participant experience in rural, regional and remote Australia Page 10 of 15

quickly narrows their selection); and that service providers sometimes offer a narrower choice of services (no market). The lack of availability of Supporting Independent Living (SIL) living services and Specialist Disability Accommodation (SDA) in rural, regional and remote areas are particular issues resulting in people having to make difficult decisions about separating their family, moving away from other supports, and moving away from country. In the NT, a particular issue is lack of building contractors to undertake necessary structural work and the associated challenges of finding a sufficient number of quotes to satisfy the NDIA to then approve funding for the necessary works.

Case Study

SIL

A client of LAWA who lived in Geraldton, a major regional centre four hours north of Perth, could not find a service provider who could provide Supported Independent Living services at the ratio she was funded for in Geraldton. Our client’s elderly father ended up having to move with her to Perth so she could get the SIL services she needed. This was very burdensome and upsetting for the whole family.

Some requirements for service providers - for example being NDIA registered – can severely limit the choices of people in rural and regional areas. If there are only a couple of registered providers in an area and the client has already tried them (or they’ve withdrawn services) clients can be left without a service provider.
While NLA acknowledges the legitimate policy rationale for the need to carefully scrutinize any request by family members to provide paid supports to a participant, LAC’s have observed an inflexible approach adopted by the NDIA where, due to practical and geographic realities, participants are seeking to engage a family member to provide support in exceptional circumstances. This is the case even where those exceptional circumstances are consistent with the circumstances outlined in the Sustaining Informal Supports Operational Guideline,

for example, when:

a. there is a risk of harm or neglect to the participant, b. there are religious or cultural reasons for funding a family member to provide supports, or c. the participant has strong personal views, for example in relation to their privacy or dignity.

NLA is supportive of the Federal Government fully implementing all action items of Recommendations 10, 11, 12 and 13 set out in the Final Review Report of the NDIS Review. Those recommended action items are as follows:

10.1 The Australian Government should develop and fund an easy-to-use centralised online platform that provides information on all locally available supports and services for participants and Navigators.

10.2 The National Disability Insurance Agency and the new National Disability Supports Quality

and Safeguards Commission should enable better two-way information sharing with third

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party online platforms to encourage digital innovation that builds on the centralised online platform.

10.3 The National Disability Insurance Agency should transition to fully electronic payments and improve visibility of NDIS payments.

10.4 The Australian Government should invest in the underpinning digital infrastructure and capability needed to protect the integrity of the NDIS.

10.5 The Australian Government should develop and implement a clear transition path for existing Plan Managers.

10.6 The Australian Government should design and roll out an NDIS digital transformation strategy and roadmap to bring together and sequence all initiatives in the NDIS digital landscape.

11.1 The Department of Social Services should develop a new NDIS pricing and payments framework to be administered by the National Disability Insurance Agency and the Independent Health and Aged Care Pricing Authority, including better ways to pay providers to promote the delivery of efficient and quality supports and continuity of supply.

11.2 The National Disability Insurance Agency should progressively roll-out preferred provider arrangements for capital supports to better leverage its buying power and streamline access for participants.

11.3 The Australian Government should transition responsibility for advising on NDIS pricing to the Independent Health and Aged Care Pricing Authority to strengthen transparency, predictability and alignment.

11.4 The Australian Government should review and refine the pricing and payments framework once underpinning reforms have been implemented.

12.1 The Australian Government should establish and appropriately resource a quality function within the new National Disability Supports Quality and Safeguards Commission led by a dedicated Deputy Commissioner for Quality.

12.2 The new National Disability Supports Quality and Safeguards Commission should make quality improvement a priority in capacity-building initiatives and audit processes.

12.3 The new National Disability Supports Quality and Safeguards Commission, working with the Department of Social Services, should design, test and implement an approach to measure and publish metrics of registered provider performance.

The action items in relation to recommendation 13 are set out in response to ToR a.

d. the particular experience of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds, with the NDIS

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LACs have observed participants of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds to have a less positive experience with the NDIS.

For example,

LACS have experience of the NDIA failing to ensure evidence of support needs being obtained in a culturally appropriate manner. For example, one concern raised in relation to a matter involving independent assessment was that the resulting report gave rise to the possibility of gratuitous concurrence.
LACs have seen the Agency fail to account for Aboriginal and Torres Strait Islander participants’ preference to return to country with appropriate supports. When cultural needs are not appropriately explored, it has the potential to result in plans being inadequate.
LACs have experience of clients reporting lack of use of interpreters. Challenges in sourcing interpreters in some languages are recognised and acknowledged.
LACs have experience of the Agency failing to consider participant’s literacy levels and to provide adjustments to communicate with the participant effectively or meaningfully.

These observations are consistent with the findings of the Final Report of the NDIS Review, in particular observations found in relation to understanding and responding to intersectional needs:

“First Nations people with disability, women with disability, people from culturally and linguistically diverse and LGBTIQA+SB communities experience intersecting layers of individual and structural discrimination impacting all aspects of their lives. This discrimination means some people are less likely to seek help.

Our disability support system is underpinned by western concepts of disability and care. This means our policies, programs, institutions and services often respond poorly to culturally and racially diverse concepts of disability and care. This further compounds experiences of inequality and discrimination, especially for First Nations people who face ongoing impacts of colonisation and a history of dispossession, not only of culture and Country, but of their bodies.

This supports a cycle of discrimination and disadvantage that affects the accessibility, quality and safety of supports received. This lack of safety can incite fear, trigger trauma, re-traumatise people and lead them not to seek available supports.20 We must do more to break these cycles of discrimination and disadvantage.”1

The Independent Advisory Council (IAC) is established under section 143 of the NDIS Act. Section 144 of the NDIS Act states that the purpose of the IAC is to provide independent advice to the NDIA Board about the way the NDIA performs its functions. This includes the way in which the NDIA provides reasonable and necessary supports. Section 145 clarifies that the if IAC does provide advice on an issue, then the NDIA Board must have regard to the advice in performing its functions.

1 Page 31, Working together to deliver the NDIS, NDIS Review: Final Report

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In May 2022, the IAC published advice about “Improving Equity in the NDIS”, in which the council noted the following:2

“Advice of this nature cannot lead to a simple ‘quick fix’ list of recommendations. Instead, Council calls on the NDIA to:

Adopt an intersectional approach to better understand and respond to complexity and work toward creating and sustaining an NDIS that is inclusive, safe, and responsive to all.
Work with representatives of the target communities to Co-Design the long-term structural work required to improve equity using the indicators of success proposed to enable the NDIA and the disability community to monitor progress.
Work with representatives of the target communities to Co-Design a plan for action over the next 2 years as a first step toward implementing the spirit of the Advice.”

NLA supports the implementation of the above advice by the NDIA.

NLA is therefore supportive of the Federal Government fully implementing all action items of Recommendations 2.10 and 14 set out in the Final Review Report of the NDIS Review. Those recommended action items are as follows:

2.10 The Australian Government should develop a national strategy to improve the quality of the disability ecosystem for First Nations people with disability.

e. any other related matters. Funding for legal assistance

The National Legal Assistance Partnership, the mechanism for Commonwealth funding of legal assistance, has recently been independently reviewed with the report presented to the Attorney General on 5 March 2024.

As part of its submission to the Review, National Legal Aid has identified the importance of legal assistance for people with a disability, including funding a National Disability Legal Service and increased funding for the NDIS Appeals Program, which provides legal assistance within the Administrative Appeals Tribunal.

The recent evaluation of Your Story Disability Legal Support, a national service that supported people with disability, their families and carers to participate within the Royal Commission found

2 IAC, Improving Equity in the NDIS, May 2022, page 7 https://www.ndis-iac.com.au/s/FINAL-Improving-Equity-in-the-NDIS-Cleared-by-Principal-Member-23-May-2022.pdf

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that a national service delivery model provided greater access for people with a disability in rural and remote communities and people in marginalised or vulnerable communities.

The Disability Royal Commission also identified the value of increased legal assistance for people with a disability, their families and carers and recommendation 6.21 recommends additional funding of $20.6 million in 2024-25 and 2025-26 for the NDIS Appeals Program.

In considering NDIS participation in rural, regional and remote Australia, NLA recommends that the funding of legal assistance is also considered including establishing a National Disability Legal Service ($6.6 million per annum) and implementing Disability Royal Commission recommendation 6.21 ($20.3 million per annum).

Conclusion

Thank you for the opportunity to provide a submission to this inquiry.

Should you require any further information from us please be in touch with the NLA Secretariat on nla@legalaid.tas.gov.au

Yours sincerely,

Louise Glanville

Chair, National Legal Aid

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