Three ways to improve the NDIS to respond to COVID-19

Submission to the Joint Standing Committee on the National Disability Insurance Scheme: Inquiry into general issues around the implementation and performance of the NDIS

30 September 2020

Acknowledgement of country

Victoria Legal Aid operates on Aboriginal country throughout Victoria. We acknowledge the traditional custodians of the land and respect their continuing connection to land, sea and community. We acknowledge that Aboriginal and Torres Strait Islander people are twice as likely as non-Indigenous Australians to have severe or profound disability (based on age-standardised rates). While the proportion of Aboriginal and Torres Strait Islander participants on the NDIS at 30 September 2019 was 5.9 per cent or 18,252 people,¹ this represents only 2.3 per cent of the estimated resident Aboriginal and Torres Strait Islander population of Australia,² as compared to almost one-quarter (23.9 per cent) who are reported to be living with disability.³ We welcome the Federal Government’s support of a recommendation in the Tune Review⁴ that the NDIA develop a comprehensive national outreach strategy for engaging with people with disability who are unaware of, or are reluctant to seek support from the NDIS, with a dedicated focus on Aboriginal and Torres Strait Islander people. We encourage consultation with Aboriginal community-controlled organisations as part of that engagement.

© 2020 Victoria Legal Aid. Reproduction without express written permission is prohibited.

Written requests should be directed to Victoria Legal Aid, Strategic Communications, 570 Bourke St, Melbourne VIC 3000.

www.legalaid.vic.gov.au

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1 NDIA Quarterly Report to DRC for the period ending 30 September 2019, p.78, cited in Tune, Review of the National Disability Insurance Scheme Act 2013 (2019) 82. 2 Australia Bureau of Statistics, Estimates of Aboriginal and Torres Strait Islander Australians, 31 August 2018, available at https://www.abs.gov.au/statistics/people/aboriginal-and-torres-strait-islander-peoples/estimates-aboriginal-and-torres-strait-islander-australians/latest-release. 3 Aboriginal and Torres Strait Islander People with Disability, Disability, Ageing and Carers, Australia: Summary of Findings, 2015 (cat no. 4430.0) available from the ABS website (www.abs.gov.au). 4 Tune, D, Review of the National Disability Insurance Scheme Act 2013: Removing Red Tape and Implementing the NDIS Participant Service Guarantee, (2019) 88.

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Contents

Executive Summary	1
Summary of recommendations	2
1 Impact of COVID-19 on VLA’s clients and NDIS plans	3
1.1 Positive NDIS changes in response to COVID-19	3
1.2 Scope of AAT power to review a decision when a plan has been changed	3
2 Delay by the NDIA following finalisation of matters in the AAT	6
3 Service interface and gaps between the NDIS and state services	10
About Victoria Legal Aid	15
Our clients	16

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Executive Summary

The NDIS holds great promise for people with disability to have choice and control to live well and independently in our community. Victoria Legal Aid (VLA) is committed to ensuring that Victorians with disability have access to tailored, appropriate NDIS plans that improve their lives and wellbeing. VLA provides free legal assistance to thousands of people with disability every year experiencing financial hardship. For example, in the 2018/2019 financial year, one in four of VLA’s approximately 100,000 clients disclosed having a disability or mental health issue.⁵ VLA receives funding from the Commonwealth Department of Social Services to provide legal representation in NDIS matters on review at the Administrative Appeals Tribunal (AAT). Since 2013, VLA has provided legal representation to over 200 people with NDIS AAT appeals.

We are committed to working closely with the National Disability Insurance Agency (NDIA) and the Victorian and Federal Governments to help make the NDIS work at its best. During COVID-19, this means that people can change their NDIS plans to adapt their supports in response to restrictive measures. A key aspect of a well-functioning NDIS is that people are supported to live independently in the community, avoid interactions with the justice system and build pathways out of mental health units and prisons. VLA is committed to ensuring there is clear and transparent communication and systems for fairly and efficiently upholding rights, resolving disputes and ensuring quality of service provision.

We welcome the Federal Government’s commitment⁶ to implement recommendations from the 2019 report Review of the National Disability Insurance Scheme Act 2013 (the Tune Review).⁷ These changes, including introducing a Participant Service Guarantee and setting timeframes for key decisions, will create system-wide improvements to the NDIS.⁸

This submission aims to provide the committee with an insight into our clients’ experiences of the NDIS during COVID-19. It highlights three urgent issues we see through our daily casework where the NDIS is not working as intended and where the consequences for individuals are serious.

First, we address the impacts of COVID-19 on our clients, highlighting some positive steps taken by the NDIA which have increased flexibility and reduced the burden on many NDIS participants. However, COVID-19 has exacerbated a jurisdictional issue in the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act) which means the NDIA is resistant to changing NDIS plans where there is an outstanding review at the AAT, even when changes are urgently needed. We recommend that the Australian Government urgently implements its commitment to clarify that the AAT continues to have jurisdiction to hear and determine NDIS reviews even where there has been a subsequent change to the NDIS plan that is under review at the AAT. NDIS participants with a current AAT review must be able to amend their plans quickly and easily during COVID-19, especially participants living in Victoria, without affecting their ongoing litigation.

5 Victoria Legal Aid Annual Report 2018–19, available at https://www.legalaid.vic.gov.au/about-us/our-organisation/annual-report. 6 See https://www.ndis.gov.au/news/5207-landmark-reforms-deliver-promise-australias-ndis. 7 Tune, D, Review of the National Disability Insurance Scheme Act 2013: Removing Red Tape and Implementing the NDIS Participant Service Guarantee (2019). 8 Victoria Legal Aid, NDIS improvements crucial for people with disability during COVID-19 (28 August 2020) https://www.vla.vic.gov.au/about-us/news/ndis-improvements-crucial-for-people-with-disability-during-covid-19.

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Secondly, we highlight concerns with the NDIA’s conduct following finalisation of AAT matters. While incoming changes by the NDIA under the NDIS Participant Service Charter and in response to the Tune Review are to be implemented, our clients continue to experience significant and unexplained delays in the implementation of their AAT decisions – in some cases, delays of more than 6 months.

Finally, we share our clients’ experiences of continuing challenges at the interface between the NDIS and State services. We welcome positive developments, including the extension of the DHHS Intensive Support Team’s funding in Victoria until the end of 2020, and NDIS Justice Liaison Officers commencing in some custodial settings. However, the uncertainty regarding the NDIS/mainstream service interface continues to act as a barrier for people accessing NDIS supports to assist them to exit prison, be discharged from inpatient units, and maintain care of their children with disability.

Summary of recommendations

Recommendation 1: Urgently amend the NDIS to clarify AAT jurisdiction

The Federal Government should urgently amend the NDIS Act to clarify the AAT’s jurisdiction, confirming:

(a) The AAT’s jurisdiction to determine the statement of participant supports from the time the original statement of participant supports (the one under review) was approved by the CEO.

(b) The AAT’s jurisdiction to approve the statement of participant supports under sub-section 33(2) of the NDIS Act, which should result in a new plan under sub-section 37(1) of the NDIS Act.

(c) The statement of participant supports decision is effective from the time the original statement of participants supports was approved by the CEO or a later date to be determined by the AAT.

(d) The AAT should determine the date by which or the circumstances in which the NDIA must review the plan as required under sub-section 33(2)(c) of the NDIS Act.

Recommendation 2: Improve implementation of AAT decisions

The NDIA should:

(a) Ensure that AAT decisions are implemented fully, with funding for all supports to be made available to participants, within 28 days of an AAT decision.

(b) Make available appropriate resourcing to ensure there is connection and communication between the NDIA lawyer responsible for the matter at the AAT and the NDIA branch responsible for implementing the plan.

(c) Implement and communicate to all parties with AAT proceedings a clear escalation mechanism within the NDIA in the event that there are difficulties with the AAT decisions being implemented.

Recommendation 3: Coordinated federal & state NDIS support framework

The NDIA should adopt a coordinated and funded service delivery framework covering NDIS and State services, with the common goal of maintaining critical supports for individuals and with clear lines of responsibility between State and Federal agencies.

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1 Impact of COVID-19 on VLA’s clients and NDIS plans

1.1 Positive NDIS changes in response to COVID-19

VLA welcomes a number of beneficial changes implemented by the NDIA to respond to issues emerging from COVID-19. Many people with disability have been more severely exposed to the impacts of COVID-19 and the associated economic effects than other members of the community. In recognition of this, the NDIA made a number of changes on 21 March and 27 April 2020, including:

• Automatically extending NDIS plans after their review date to ensure continuity of funding
• NDIS participants can access longer plans of up to 2 years
• Efforts have been made to contact participants whose health, disability or other circumstances could make them more vulnerable during COVID-19 and increase accessibility of advice on changing plans, via web chat and telephone, and
• Some participants may use funding flexibly to purchase low-cost assistive technology to ensure they can continue to access their funded supports until September 2020.

From 13 June 2020, all participants with core supports can also use all four core funding categories under their core supports budget, without the need for a plan review.

The Federal Government’s commitment to implement the recommendations from the Tune Review will also lead to important system-wide changes to the NDIS. VLA notes that disability advocates and organisations have raised concerns about the proposed independent assessment process,⁹ and encourages the committee to consider these concerns as part of this inquiry.

These changes are positive steps taken by the NDIA to deal with some COVID-19 impacts. Further, the increased flexibility, longer plans, continuity of funding and increased accessibility to advice on changing plans are models which should be continued, invested in and replicated by the NDIA, as they place participants’ needs at the centre of decision making.

1.2 Scope of AAT power to review a decision when a plan has been changed

Despite the positive changes identified above, VLA is also seeing the ways in which COVID-19 is creating acute unresolved issues for NDIS participants seeking our assistance, including because of jurisdictional issues.

The question of whether the AAT’s jurisdiction continues after a NDIS plan is amended while the AAT appeal is on foot¹⁰ has meant that a number of our clients have been unable to amend their NDIS plans to respond to their needs during COVID-19. The NDIA has been reluctant and indeed has refused in several cases to vary plans during COVID-19 where there is a current AAT proceeding.

In one case, a mother was told that she needed to withdraw her son Lenny’s¹¹ AAT appeal to be able vary her son’s NDIS plan to respond to COVID-19.

9 See Caitlin Fitzsimmons, ‘Government appoints independent assessors to make the NDIS ‘fair and consistent’, The Age (13 September 2020) https://www.smh.com.au/politics/federal/government-appoints-independent-assessors-to-make-the-ndis-fair-and-consistent-20200911-p55ux3.html. 10 See for example: SHGH and National Disability Insurance Agency [2018] AATA 674; FFVQ and National Disability Insurance Agency [2018] AATA 1968; Williamson and National Disability Insurance Agency [2019] AATA 2944. 11 All client names in this submission have been changed.

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NDIA tells me to withdraw my son’s AAT appeal if I want interim supports

The world is a confusing place for my son Lenny when plans change. I am his rock and guide. COVID-19 has been so hard for us. To be honest, most days I haven’t been coping.

Lenny is seven and tall for his age. He loves playing with our two cats. He has been diagnosed with Autism and sensory processing disorder, as well as ADHD, oppositional defiant disorder, auditory processing disorder and anxiety. Lenny also has learning difficulties and needs constant support with home schooling and online therapy.

Being at home through COVID-19 has been hard. When COVID-19 hit, I realised I needed a wide angled web-cam in order for online therapy to work, but even though we have money in Lenny’s NDIS plan, the NDIS initially were chopping and changing about whether you can spend money on a device. First it’s ‘yes you can buy a device’, then they’ve put things on their website saying ‘yes you can buy a device’ and then they’ve removed it. I also realised we needed some additional low-cost assistive technology items to do remote therapy and a support worker to help me manage my carer role and attend important medical appointments because Lenny is now home 24/7. Funding for a support worker and low-cost assistive technology are already in Lenny’s plan but we need them more intensively during COVID-19. The NDIA didn’t think these are COVID-19 specific supports.

When I asked for urgent supports in April, the NDIA told me that I will need to withdraw Lenny’s Tribunal appeal to get them in his plan. This was scary and stressful. During the first lock down, I called one of the parent helplines because we weren’t coping, and I was told my options are to either deal with it or call DHS. Since then, I’ve tried really hard to get help from the NDIS. I’ve had many conversations with different people at the NDIA to ask for these supports. I got told different things and kept being passed around. Sometimes, I just never heard back from the NDIA. No one could give me a clear response. It feels like no one wants to talk about our urgent support needs. The overwhelming message was that there was nothing the NDIA could do because of the Tribunal appeal.

Stage 4 lockdown has been so hard for us. I feel like we’re trapped at home without any support. Lenny isn’t coping. He’s behind in school, isn’t cooperating with online therapy and has a really hard time when we need to leave the house to get essentials. I feel like I’m on a roller coaster. I’m Lenny’s full-time carer and I’ve also had to be his teacher’s aide and therapy assistant. Some days it’s ok, but most days I’m drowning in tasks. We’ve also had to deal with issues with Centrelink and issues with my landlord including falling behind in rent and a threat to evict us. I feel in the dark and out of control of everything. My GP recently prescribed me medication to help me manage my anxiety during COVID-19. I want the best for Lenny and without urgent supports, we’re finding it really hard to cope.

I understand that currently the NDIA and VLA are trying to work out a way for the NDIA to change Lenny’s plan without it affecting the jurisdiction of the AAT. I’ve also provided support letters about why we need the urgent supports. I asked for the supports back in April 2020 and its now August and Lenny is still waiting.

Lenny’s mother’s experience highlights how the NDIA’s approach is exacerbating hardship for children and families struggling to cope with additional pressures during COVID-19. This is

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particularly acute for our clients in the Melbourne metropolitan area, which has been in restrictive lockdown for more than 6 months.

Unfortunately, Lenny is not the only client who has experienced this difficulty in changing an NDIS plan during COVID-19. In May 2020, a VLA lawyer acting for an NDIS client received a call from the NDIA to do a “COVID welfare check” in relation to the client and to see whether the client needed any changes to his plan, but was then told that because there was an AAT appeal outstanding, no changes could actually be made to the plan.

Our clients have been unable to change their plans because there is uncertainty about the scope of the AAT’s jurisdiction to review a decision where a plan has been replaced. There are many instances where plans are replaced before the AAT makes a decision, and even minor changes to supports or goals result in a new plan. Changes to plans due to COVID-19 require a new plan to be prepared, and the effect of this on an existing AAT appeal is unclear. This is because under the NDIS Act, the AAT does not have clear jurisdiction to consider any subsequent decision that the NDIA may have made, including changes to a plan. As a consequence, the AAT’s decision can quickly become obsolete if there are changes to a plan before the AAT matter is finalised.

There is no uniform approach to preserving the AAT’s jurisdiction when a plan has been replaced or changed and the case law remains confusing. To deal with this issue, AAT members have adopted the following inconsistent approaches, including:

• making orders only in relation to reimbursement for the duration of the plan under review;
• making orders for prospective supports (e.g. by making its decision take effect from the date of its review rather than the date the original plan was approved);¹²
• creating a new plan (e.g. starting from the date the plan commenced until the AAT decision);¹³ or
• varying the unscheduled plan reassessment date so the plan has not been replaced before the AAT decision (either by agreement between the parties¹⁴ or remitting the matter to the decision maker by consent).¹⁵

As a result, to preserve the AAT’s prospective jurisdiction, where a plan has been replaced while an AAT proceeding is pending, our clients either need the NDIA to agree to an order under section 42D of the NDIS Act to remit part of the decision back to the NDIA to be redetermined, or alternatively they need to lodge an internal review request for the replacement plan and then have that decision included in the AAT appeal. In the latter case, this depends on the NDIA processing this in a timely manner. As the NDIS Act does not set a timeframe for a decision to be made on internal review under section 100 beyond “as soon as reasonably practicable”, participants may face delays before they receive an outcome to join it to the AAT proceeding.

This jurisdictional issue was considered in some length in the Tune Review, with the report noting that “[u]nderstandably, this is creating administrative red tape and frustrations for both participants and the NDIA”.¹⁶ The Tune Review went on to recommended that the NDIS Act should be amended

12 See for example: Re PNMJ and National Disability Insurance Agency [2015] AATA 866, [23]-[26], [106]. 13 Re QZHH and National Disability Insurance Agency [2018] AATA 1465, [47]-[65] (Member Parker); Re Ewin and National Disability Insurance Agency [2018] AATA 4726, [280]-[318] (Member Parker). 14 Re SHGH and National Disability Insurance Agency [2018] AATA 674, [30]-[32] (Deputy President Constance). 15 Re Williamson and National Disability Insurance Agency [2019] AATA 2944 (Deputy President Forgie). 16 Tune, D, Review of the National Disability Insurance Scheme Act 2013: Removing Red Tape and Implementing the NDIS Participant Service Guarantee, December 2019.

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to clarify the AAT’s jurisdiction, including the power for a plan to be amended while a matter is before the AAT. The Tune Review also recommended that internal reviews should be conducted within 90 days (between 1 July 2020 to 30 June 2021) and within 60 days after 30 June 2021.

The Australian Government has indicated it supports, or supports in principle, all of the recommendations of the Tune Review. It has committed to work in close collaboration with people with disability and the disability sector to implement these reforms over the next six months, in line with public health advice, including consultation on any legislative changes required.

In our view, urgent legislative amendment is needed to clarify the scope of the AAT’s power when reviewing plans that have been replaced. This is especially important in light of the extended hardship our clients are experiencing and their inability to amend NDIS plans during COVID-19 without affecting their AAT matter.

The ability of the AAT to vary or create plans spanning beyond the effective period of initial plans should also be reflected in the NDIS Act. These changes should reflect the intent of merits review to provide reviewers with a wide remit to give effect to the correct or preferable outcome. It should not restrict the AAT to reviewing individual plans in individual applications for review. It should also not require individual plans to be individually reviewed and then joined at the AAT level, given the additional resources that this would require of NDIS participants, the NDIA and the AAT. Pending full implementation of the Tune Review recommendations, the NDIA should also prioritise internal review applications which have been made to replaced plans to preserve the AAT’s jurisdiction.

Recommendation 1

The Federal Government should urgently amend the NDIS Act to clarify the AAT’s jurisdiction, confirming:

• The AAT’s jurisdiction to determine the statement of participant supports from the time the original statement of participant supports (the one under review) was approved by the CEO.
• The AAT’s jurisdiction to approve the statement of participant supports under sub-section 33(2) of the NDIS Act, which should result in a new plan under sub-section 37(1) of the NDIS Act.
• The statement of participant supports decision should be effective from the time the original statement of participants supports was approved by the CEO or a later date to be determined by the AAT.
• The AAT should determine the date by which or the circumstances in which the NDIA must review the plan as required under sub-section 33(2)(c) of the NDIS Act.

2 Delay by the NDIA following finalisation of matters in the AAT

We continue to see significant and unexplained delays by the NDIA in the implementation of decisions following finalisation of matters in the AAT. There is no legislated timeframe for the NDIA to implement the AAT’s decisions. From 28 August 2020, the Participant Service Charter now includes a timeframe of 28 days for the NDIA to implement a plan variation from an AAT decision. However, the implementation of the Participant Service Charter has not been given legislative force. As a result, NDIS participants still have some uncertainty as to when their AAT decisions will be implemented by the NDIA.

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The Tune Report found that the NDIA has deployed significant operational resources to improve the experiences of participants undergoing AAT appeals, including the timely implementation of AAT decisions. In practice, our clients have continued to experience long and unexplained delays between AAT decisions and the implementation of those decisions. The majority of these cases follow decisions being made by the AAT with the consent of the NDIA.

Appealing an NDIA decision to the AAT involves extensive delays and causes stress and difficulty for participants, their carers and families. Significant resources are usually required before the AAT can consider whether a participant’s request for supports should be funded. People’s support needs are effectively sidelined pending resolution at the AAT. Accordingly, it is essential that AAT decisions are implemented in a timely manner by the NDIA, as the consequences of further delays when the decisions relate to reasonable and necessary supports are significant for participants and can mean they are without necessary disability supports for extended periods. By the time decisions are made by the AAT, it is typically over 12 months since the person requested the supports in the first place.

NDIS delays have serious and significant impacts on people with disability’s quality of life. The impact of COVID-19 has only served to highlight the need for quick implementation of decisions. The experience of the father of a client who faced a delay of over 5 months between the AAT decision and receiving the supports illustrates the real-life consequences of NDIS delays.

It takes over 5 months for the NDIA to fund what they agreed to at the AAT

My wife and I have two daughters who are 17 and 15. Both my daughters have severe autism. They are unable to speak and have an intellectual disability. They both have NDIS plans. Due to their sensory seeking behaviours, they engage in harming behaviours, including self-harm. For example, they both bang their heads on walls and doors.

Over 4 years ago, an occupational therapist and behaviour support team undertook sensory assessments and recommended that a sensory room would likely provide the most effective means to allow the girls to self-regulate their sensory needs. It was recommended we install one in our house, with a LED musical touch wall and a bubble column with mirrors.

This was just before the NDIS was rolled out where we live in regional Victoria, so we were unable to get it funded then as services were waiting for the NDIS to arrive. As soon as it arrived, we applied for the NDIS and the girls were placed on plans with a range of supports, but the NDIS refused to fund the sensory room.

After an unsuccessful internal review application, in mid-2018 we appealed to the AAT. VLA acted for one of the girls at the AAT. We didn’t get to final hearing, as after 12 months of negotiations and providing many reports, assessments and quotes, in August 2019 the NDIA agreed to fund the sensory room. We agreed to consent orders in the AAT that reflected the cost of the equipment and installation needed. We were so relieved.

However, my relief was short lived, as despite a new plan letter being sent 3 weeks later which referred to the sensory room, the new NDIS plan didn’t actually include any funding for the room. The NDIS portal told me I had $0 to spend. I followed up with the NDIA time and time again but was told no one knew what was happening or I was referred to the NDIA head office, who also couldn’t help.

At one stage I was told that we needed to get an assessment and report from an occupational therapist to provide to a NDIA assistive technology assessor. I was so

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confused that the NDIA wanted another report to make the funding available. They had these reports before they agreed to pay for the room. Why did they need another report when there was an order of the AAT? It was a complete paradox.

By January 2020, 5 months after the AAT order had been made, we still couldn’t get the NDIA to actually make the funds available, and I was at my wits end. We had made an internal compliant and an Ombudsman’s complaint, and I went back to VLA to see if they could help. It was only then that someone within the NDIA worked out that if they switched the plans to self-managed, I could buy the equipment and claim reimbursement. After 5 difficult months of uncertainty, that is what I ended up doing. It worked out for us in the end, but not everyone has $12,000 in the bank to spend upfront and then wait to be reimbursed.

It seems to me that there is no mechanism within the NDIA to translate what is agreed at the AAT into an NDIS plan which can actually be used. We were able to get the sensory room in the end only because we could afford $12,000 upfront, but I imagine other families or people with NDIS plans are not so fortunate. It also took over 5 months from when the AAT orders were made.

I cannot express how happy I am now that we have the sensory room for the girls. It has genuinely helped to reduce the incidents of self-harm for both girls. When I look back at the process, if the NDIA has just agreed to fund the room to start with, or at the very least when they agreed back in August 2019 at the AAT, so much harm could have been prevented. It is my daughters’ quality of life which is at stake.

This case highlights that the NDIA did not have an adequate mechanism or system in place to convert the AAT’s orders into an operable NDIS plan that could be used, and there was no delineated pathway for the client to resolve this issue with the NDIA.

This client’s experience is unfortunately not an isolated one. A number of VLA’s clients have waited between 3 to 6 months to receive supports after their AAT matters finalised. One client had to wait 6 months from the decision of the AAT until the supports were funded, again in circumstances where the NDIA had consented and agreed in the AAT proceeding that the supports were reasonable and necessary and should be included in the client’s plan.

In Marcus’ case below, it was not until VLA indicated that we would need to commence legal proceedings in the Federal Court to require the NDIA to implement the order of the AAT that the decision of the AAT was actually implemented by the NDIA. In that matter, the NDIS had agreed in consent orders to backpay over $85,00 for costs incurred for therapy, but when the client’s mother sought payment, the NDIS did nothing for over 3 months and then advised her that “unfortunately [the NDIA] cannot provide a timeframe or guarantee payment however this has been escalated.”

It shouldn’t be this hard to get the help my son needs and deserves

For nearly three years my husband and I have fought what feels like an endless battle for our son, Marcus. Just before he turned 3, the NDIS took him on as a participant. Marcus has Autism Spectrum Disorder. His first plan did not have enough funding for the early intervention he needed.

We applied for review of Marcus’ NDIS plan in late-2017. The NDIA did not conduct this review. I felt that they had completely disregarded the application and Marcus was not being

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heard. I didn’t know what to do. It was only when we were assisted by a disability advocate a year later that the NDIA acknowledged our review request, and nevertheless it has still been an ongoing struggle. In the meantime, our family were out-of-pocket covering much of the cost of Marcus’ early intervention needs. The matter ended up in the AAT and Victoria Legal Aid took our case.

After an incredibly stressful process at the AAT, the matter settled at a conciliation and in June 2019 the NDIA agreed to pay for the supports, including backpay of nearly $90,000 to cover supports we had paid. The NDIA advised us that consent orders would need to be written and agreed to, which would take approximately 3 weeks. We were elated, we had finally resolved this, we felt a sense of relief, we felt so many emotions, a weight lifted from our shoulders that in 3 weeks we would have the funding to continue Marcus’ therapy. We were in disbelief, it was over. At least this was what we thought.

It took until September 2019 for consent orders to be finalised, until October 2019 for a new NDIS plan to be prepared, and in early December 2019 we were still waiting to be back paid. We are in such a difficult situation trying to scrape the bottom of the barrel to pay therapy bills – we relied on personal loans to get by. At one point when I asked the NDIA when we would be paid, I was told there was no guarantee we would be paid at all. We had come to an agreement with the NDIA in good faith and we trusted that they would keep their word and finally help our son.

Communication was poor, we didn’t know who is overseeing Marcus’ case, we didn’t know who was responsible, we didn’t know who to contact and we didn’t know when, or if, we would get what had been promised. I felt like I was banging my head against a brick wall.

We finally got paid in mid-December 2019 after we went back to Victoria Legal Aid and they threated further legal action. It made us feel deflated, extremely disappointed and disheartened. Even retelling this story makes me upset, frustrated and angry.

We will never stop fighting for our son. It shouldn’t have to be this hard to get the help he needs and deserves. This time in life is so crucial for him. Marcus is about to turn 6 and has so much potential – he is likely to start school next year. We just want him to have a bright future where he can function to the best of his ability.

In our clients’ experience, there has been a lack of connection and communication between the NDIA’s instructor or lawyer who runs the matter at the AAT and the local branch of the NDIA responsible for implementing plans after finalisation of matters at the AAT. In Marcus’ case, it took VLA proposing further legal action for the NDIA to make the agreed funds available, and in the meantime his parents had to rely on personal loans to fund the therapy he needed.

We encourage the NDIA to acknowledge the burden created by this conduct both for people with disability and for the legal system. Priority should be given to ensuring that decisions of the AAT are implemented promptly and without the administrative requirement for further reports or assessments to be funded.

We recommend that the timeframe of 28 days for the implementation of AAT decisions that has been included in the Participant Service Charter is implemented without exception by the NDIA. We also recommend that appropriate resourcing and funding is made available to ensure connection and communication between the NDIA lawyer responsible for the matter at the AAT and the NDIA branch

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responsible for implementing the plan to ensure the plan is prepared and implemented as intended. VLA’s experience with Centrelink implementing AAT decisions in social security matters provides a model on how this can work – in those matters there is clear communication between legal services responsible for the AAT matter and the regional officer at Centrelink who implements the decision.

Finally, in the event that there are difficulties with the AAT decisions being implemented, we recommend a clear escalation mechanism is implemented and communicated to all parties with AAT proceedings to provide a contact point for participants should there be any issues with implementation.

Recommendation 2

The NDIA should:

(a) Ensure that AAT decisions are implemented fully, with funding for all supports to be made available to participants, within 28 days of an AAT decision.

(b) Make available appropriately resourcing to ensure connection and communication between the NDIA lawyer responsible for the matter at the AAT and the NDIA branch responsible for implementing the plan.

(c) Implement and communicate to all parties with AAT proceedings a clear escalation mechanism within the NDIA in the event that there are difficulties with the AAT decisions being implemented.

3 Service interface and gaps between the NDIS and state services

Despite ongoing concerns around “thin markets”¹⁷ and uncertainty regarding the interface between NDIS and mainstream services, there is still no enforceable obligation on any government body to ensure NDIS participants – particularly participants with complex needs and people in regional areas – receive their funded supports. As a result, our clients continue to suffer the consequences caused by gaps between the NDIS and state mainstream services.

VLA raised these issues in our previous submission to this Joint Standing Committee in March 2019.¹⁸ There have been a number of positive steps between taken since then, including Intensive Support Team funding in Victoria being extended until the end of 2020 and NDIS Justice Liaison Officers recently commencing in some custodial settings in Victoria. Despite these positive changes, there remain interface issues and lack of service coordination for clients between state and disability services, and also in youth crime and criminal justice settings.

17 Joint Standing Committee on the National Disability Scheme, Parliament of Australia, Market readiness for provision of services under the NDIS (2018) 78. The Committee recommended that ‘the NDIA publicly release the outcomes of the Maintaining Critical Supports project and its policy on provider of last resort (PLR) arrangements as a matter of urgency’ (recommendation 24) in September 2018. See also, Joint Standing Committee on the National Disability Insurance Scheme, Parliament of Australia, Transitional Arrangements for the NDIS (2018) and Joint Standing Committee on the National Disability Insurance Scheme, Parliament of Australia, Provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition (2017); Productivity Commission, Parliament of Australia, National Disability Insurance Scheme – Costs (2017) 36; Australian National Audit Office, National Disability Insurance Scheme—Management of the Transition of the Disability Services Market, Report No 24 (2016–2017) 27; McKinsey & Company, Independent Pricing Review, (Final Report, February 2018). 18 Available at https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/General_NDIS/Submissions.

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There is still need for a better coordinated and funded service delivery framework between the NDIS and state services to maintain critical supports for individuals. The following experience of one of VLA’s clients illustrates some of the challenges people face trying to access NDIS supports.

It’s taken me 19 months of me screaming to get things into place

I have two beautiful sons who are at primary school, and both are on NDIS plans after they were diagnosed with Autism Spectrum Disorder and Attention Deficit, Hyperactivity Disorder. My life revolves around them and making sure I can get the supports they need. It’s a Monday to Friday job – I honestly have to work full time to advocate for my family. I spend most of my time getting reports, documents and preparing them into summaries to justify what we are spending to the NDIA and to get more or different funding when we need it.

With our first application to the NDIS for our eldest child, the plan was insufficient. Then over time, our second son was diagnosed and both plans for the children barely covered what we needed, even though there was so many reports provided to justify what we were asking for. We appealed to the AAT for both children.

COVID-19 unsurprisingly made things significantly worse for us. In early May 2020, our lawyer at VLA got a call from the NDIA to do a welfare check, but they were told that because we had an AAT appeal on foot, we couldn’t actually get a change to the children’s plans to respond to COVID. However, we were able to submit a change of circumstances application with success to change their plans with a whole new rollover resulting in withdrawing the AAT hearing. It was bureaucracy gone mad. I just don’t understand the processes and why my family has had to endure such stressors.

One of the other big issues I have noticed is a failure and breakdown between the public system and the NDIS. We have found that support providers and government services are still deflecting back to the NDIS and saying that it’s not their responsibility to provide us with services if we have an NDIS plan. For example, after one of my sons was hospitalised due to an acute mental health episode, the hospital refused to transfer us back to Ballarat (from Melbourne) because they said it was a disability specific admission. There are too many grey areas where everyone is passing the buck, often back to the NDIA.

There is a key missing element in the system: that is someone who is responsible to help navigate between the State system and the NDIA. Even though in legislation this is the support coordinator’s role, in our experience this is not done effectively, and it causes more confusion for all services. As its set up, NDIA fund the plan, and the support coordinator can help implement the plan, and the therapists and disability workers give the supports under the plan, but there is no middle person who can help us with the gaps – to know what is within the NDIS and what isn’t, and to help support families to get the supports they need when they fall through the gaps in the system.

After things reached crisis level in June this year (2020), including child protection and CAMHS (Child and Adolescent Mental Health Services), Autism Advocacy Services all getting involved, we were linked into the complex support needs pathway unit at the NDIA.

It has been a very long road and a huge amount of effort required to advocate for my family. It has taken me 19 months to get things into place. However, as of September 2020 we are

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out of funds again as the plan hasn’t been rolled over to assist with our crisis. COVID-19 has impacted our family moving forward.

I have been screaming out for help and even at the complex pathways level I’m being requested for further reports, when reports were only submitted 5-6 months ago, and the support coordinator is in regular contact to advise the NDIA of the situation. There has been 24/7 care implemented due to the level of need for our family. This journey has impacted my husband so significantly that he has had extended leave off work with no end in sight to his return of normal capacity.

The systemic abuse through this process has impacted both mine and my husband’s mental health and general wellbeing. It shouldn’t need to take such a significant amount of stress, burden and this level of advocacy. The NDIA should provide a person of experience and be authentic in assessing and making decisions that impact a family so significantly.

It should never have taken this long to get to this point and get the right funding and services in place.

This client’s experience clearly illustrates that systems such as the complex pathways unit are crucial to ensuring people and families with disability can access the supports they need and navigate a system which is not always clear in terms of who is responsible for funding.

The damage being caused through this deficiency is difficult to overstate and is clearly illustrated through our client Rick’s experience. Due to loss of his NDIS funded services when he entered custody, Rick was refused bail because his accommodation and supports failed. Rick lost his communication support workers and was unable to communicate for 6 weeks when he entered custody because the NDIS said they were no longer responsible for funding his communication supports once he was remanded.

Rick can barely communicate when he loses his NDIS funded supports and then can’t get bail or appropriate accommodation

Rick is 19 years old and has a diagnosis of bilateral severe/profound sensorineural deafness, severe language disorder in Auslan and severe pragmatic communication disorder. He also has ADHD, ASD, mild cerebral palsy, global intellectual delay, with a full-scale IQ of 50, slow transit bowel syndrome and anxiety. This means that Rick is non-verbal, requiring both an Auslan and deaf relay interpreter. He has no verbal communication or comprehension abilities whatsoever and no ability to lip-read. He requires significant supports and has a NDIS plan where, while in the community, he receives funding for 2:1 supports 24 hours a day. Rick has developed a relationship with one of his support workers, Jeff, who assists with his communication and is funded through Rick’s NDIS plan. Jeff is crucial in Rick’s life.

In early 2020, Rick is arrested for an alleged assault and is remanded in prison. When Rick is initially remanded, he had no access to support workers to enable him to communicate. He had no supports at all for 5 days, until he was transferred to a new corrections facility. Then, for the next 6 weeks, Rick was barely able to communicate. He could only see Jeff by Jeff visiting as a personal visitor or with his lawyer or psychologist, and Jeff was only able to do this once or twice a week for an hour. When Jeff was not there, Rick was able to use interpreters when he had appointments, but those interpreters could not actually effectively

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communicate with Rick, and they were not there most of the time. Rick had to rely on visual cues and the prison staff having an Auslan dictionary, but Rick’s severe language disorder meant he needed deaf relay and Auslan interpretation to understand.

When VLA raised this issue, the NDIA said it was not their responsibility as Rick was now in custody, and the Department of Justice said the delay was because they needed to train Jeff and get police and other clearances. There was no mechanism to ensure continuity of supports between the NDIS funded supports Rick had while he was in the community and the supports available while in custody. VLA also raised the lack of disability supports with the DHHS, the Intensive Support Team and Rick’s support coordinator, and found that no one was actively taking responsibility for ensuring Rick had the disability supports he needed. Eventually Rick was able to see Jeff again, but after 6 weeks, his risk behaviours had increased.

Rick also fell into a service gap which impacted his ability to get bail and housing. He was refused bail, in part due to the increase in risk behaviours, which was linked to his lack of communication supports, and in part because there were no accommodation options available to him. Rick didn’t have specific accommodation funding in his NDIS plan, and NDIA said they were not responsible for housing him in any event, and a community-based organisation said that due to the high level of support needs and safety concerns, and also gaps in funding between the NDIS, DHHS and Department of Justice, they didn’t have the resources to house Rick.

Rick was eventually transferred to a secure custodial residential facility but lost access to Jeff again because he was not registered as a worker with the facility or with a disability support organisation.

As a result, Rick remains in custody and cannot access his key communication support worker, and no one is actively looking for alternative accommodation options. Until he is released into a non-custodial setting, he cannot access his NDIS plan and key support workers, and while he cannot assess his key support workers, his risk behaviours increase which effects his ability to get bail.

We continue to see the consequences for our clients – particularly people with complex needs – where service providers are not willing or able to provide the services and supports a person needs to live well and safely in the community. As Rick’s story shows, at its worst, both the market failure and the lack of coordination between NDIS funded and State services has negative impacts on people’s mental health and wellbeing. People like Rick lose access to services they previously had on entering custody, which can cause both immediate and long-term harm to people’s social and economic wellbeing.

Although there have been improvements in the range of services provided by the NDIA to address interface and service gap issues, there is still no enforceable obligation on any government body to ensure that an NDIS participant receives their funded supports and no systematised way of avoiding and addressing thin markets or service gaps and their consequences.

We appreciate that novel issues may arise at the State/Federal interface. At present, we see that NDIS participants are themselves left to deal with the consequences. Instead, government agencies have a responsibility to work together to join up the multiple intersecting regimes to ensure there is a

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systematised and efficient approach for people with complex needs at the interface between NDIS and mainstream systems.

Recommendation 3

The NDIA should adopt a coordinated and funded service delivery framework covering NDIS and State services, with the common goal of maintaining critical supports for individuals and with clear lines of responsibility between State and Federal agencies.

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About Victoria Legal Aid

Victoria Legal Aid (VLA) is a Victorian statutory agency responsible for providing information, advice and assistance in response to a broad range of legal problems. VLA assists people with legal problems such as family separation, child protection, family violence, discrimination, criminal matters, fines, social security, mental health and tenancy.

In 2018–19, VLA provided assistance to over 100,000 unique clients from our 14 offices across Victoria. As the image below shows, our clients from the 2018–2019 financial year are diverse and experience high levels of social and economic disadvantage. Almost half of our clients are currently receiving social security and one in three of our clients receive no income at all. Over 25,000 people disclosed having a disability or experiencing mental health issues and a significant proportion live in regional Victoria or are from culturally and linguistically diverse backgrounds. We offer a specialist legal service which provides advice and representation at courts, tribunals and psychiatric hospitals for people with disabilities and mental health issues.

VLA receives funding from the Commonwealth Department of Social Services to provide legal representation in NDIS matters on review at the Administrative Appeals Tribunal (AAT). Since 2013, VLA has provided legal representation to over 200 people with NDIS AAT appeals.

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Our clients

• 7% Were at risk of homelessness
• 25% Disclosed having a disability or mental illness
• 12% Were in custody, detention or psychiatric care
• 18% Were younger than 19 years of age
• 5% Required the assistance of an interpreter
• 5% Identified as Aboriginal or Torres Strait Islander
• 32% Had no income*
• 47% Were receiving some form of government benefit
• 30% Were living in regional or rural Victoria
• 25% Were from culturally and linguistically diverse backgrounds**

These figures do not include clients seen by a private practitioner duty lawyer.

• Examples include children and young people, people experiencing homelessness, people in custody and immigration detention, and psychiatric patients. ** This is based on the Australian Bureau of Statistics definition of people from culturally and linguistically diverse backgrounds. It includes people who speak a language other than English at home and people who were born in a non-English speaking country.

Victoria Legal Aid Three ways to improve the NDIS – 30 September 2020

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