Reforming the NDIS to meet people’s needs

Reforming the NDIS to meet people’s needs

Tuesday, 6 August 2019

We have joined with the Northern Territory Legal Aid Commission and Legal Aid Queensland to present the stories of 10 people across Australia whose lives and wellbeing have been affected by the transition to the National Disability Insurance Scheme (NDIS).

‘The NDIS is a source of hope for many of our clients, but it is adding another layer to an already complicated system. “Thin markets” – where people cannot get the services they are funded to receive – are one of the significant reasons that the NDIS is not yet living up to its promise of giving choice and control to Australians with disability’, said Rowan McRae Executive Director of Civil Justice Access and Equity.

Our submission to the Department of Social Services and the National Disability Insurance Agency’s NDIS Thin Markets Project, highlights that ‘thin market challenges’ have very real consequences for people, their families and the communities around them.

The effects of these failures are particularly felt by people with complex needs and people in regional areas – where service providers are not ready, willing or able to provide the help a person needs to live well and safely in the community.

Of the 10 people whose stories we share, seven are living in regional or remote areas, six are young people, two are experiencing homelessness or at risk of it, and four spent protracted periods in jail or a mental health unit that could have been avoided with the right housing and supports in the community.   

We share the story of Legal Aid Queensland’s client Zachary:

Zachary lives in a remote community in Queensland, and his mother is required to travel over 800km each week to take Zachary to the closest regional town, city and metropolitan city for medical appointments assessments and therapy services. The funding in Zachary’s current NDIS plan does not include any allowance for travel time or for the provision of support workers to assist Zachary at home. Zachary’s parents are physically and emotionally exhausted and this current arrangement is unsustainable.

In another story about our 22-year-old client Beau, his Mum explained that she took her son’s case to the Administrative Appeals Tribunal in the hope that his NDIS plan would continue to fund enough visits to a care program in his regional town that he had been attending since age 7.

‘I want [Beau] to be happy. At [the program], Beau is getting the benefits of both the peer-to-peer socialisation and skills for independent living which I regard as very important for him. Beau is able to express what he wants, and he wants to go back to staying at [Street] every fortnight or so like he was doing. That makes him happy. If Beau is happy then it rolls onto us as a family. I think his wishes should be given priority’.

Six key priorities to address ‘thin markets’ and their impacts

Our submission identified six key priorities to address ‘thin markets’ and their impacts:

  1. Planning that sets people up well from the outset. Equipping, resourcing and overseeing skilled planning, that facilitates supports that are appropriate to the person and their needs, is critical to the effectiveness of the NDIS.
  2. A workforce and system that can engage with complexity. This includes skilled and experienced support coordinators for people with complex needs to problem-solve issues, navigate systems and think creatively about supports.
  3. Choice and control for people in rural and regional communities and access to culturally safe services. This includes training, engagement and capacity building for local services, changes to pricing and guidelines in relation to travel for providers and participants, and – if needed – directly purchasing services on behalf of participants.  
  4. A planned approach to people in prison or inpatient units. Clear processes for planning for a person’s release before their sentence is complete or discharge is imminent should be introduced to support successful discharge or release and reduce risk of reoffending or readmission.
  5. Using pricing as a lever. Pricing should contemplate the costs of delivering supports to people with high and complex needs, as well as the costs of delivering supports in regional and remote areas.
  6. A service safety net that is responsive, accessible and has clear accountability. If a person has been found eligible for the NDIS and has a funded plan but cannot secure supports for reasons related to the market or the support provider withdrawing, the NDIA or other government agencies must intervene to ensure that the person with disability does not bear the burden of this system failure. It must be clear (including to the public) who is responsible for arranging, funding and providing services in these situations.  

‘In its current form, the NDIS cannot adequately cope with complexity: complexity of needs, complexity of behaviour and complexity of location. Australia’s system for meeting the needs of people with disability can – and must – do better than this’, said Rowan.

‘Our submission also identifies models that are working to meet clients’ needs. We hope that these models will provide a blueprint for how the NDIS could be made to work better for the people who need it’ she said.

We look forward to continuing to work with people with disability, the NDIA, the State, Territory and Federal Governments and our partners in the community and legal assistance sectors to resolve these priority issues and maximise the potential of the NDIS for our clients and the community.

Two stories of ‘thin markets’ and their impacts

Beau – Removal of choice in access to respite services has serious consequences for young man and his family

Beau is a 22-year-old NDIS participant living in regional Victoria with Down syndrome.

He was adopted as a baby and lives with his mother in a regional centre with five younger children, some adopted and others fostered by his mother, including very young babies. Some of his foster siblings also have significant disabilities.

Beau’s disability means that he attends a full-time independent living day program between 9 am and 3 pm on weekdays and has done so since he turned 18. He calls his day program 'work' and loves going there. Beau has a girlfriend who also has a disability and he spends time with her once a week, either at his home or at hers. Beau collects and watches DVDs and he loves Power Rangers and wrestling videos. He also plays drums and harmonica in his church band.

Beau needs constant supervision to avoid putting himself at risk of harm. He can do some things by himself but needs help with personal care and a lot of day to day living needs.

Since the age of seven, Beau has accessed regular respite services approximately once a fortnight to give both Beau and his mum a break from the home environment. From the age of 16, Beau has mainly used a DHHS facility called Street (anonymised name of the respite service) in his regional home town as his respite provider.

Because Beau has gone to the same respite facility so regularly, he’s grown up with the same group of boys who also have significant disabilities. Beau considers Street his home away from home. He has made some close friends among the other boys and Street is only place he gets to socialise with these friends.

Beau’s initial NDIS Plan allowed Beau to use 'in kind' funding to continue going to Street for respite although the number of nights he could go there was reduced from his average 72 nights per year to 60 nights.

Unfortunately, in Beau’s second NDIS plan, this 'in kind' funding was significantly reduced from 60 nights to 24 nights. The NDIA told Beau that he could use other 'flexible funding' in his core supports to access respite service providers if he needed to.

However, in Beau’s regional town there are only two viable respite service providers for him and the NDIA’s decision to significantly reduce 'in kind' funding meant that Street, Beau’s preferred respite facility, wasn’t available to him.

Beau’s mum noticed an immediate deterioration in Beau’s behaviour when he couldn’t keep going to stay at Street. He became aggressive and would have tantrums that took hours to abate. Beau began to assault his mum and his behaviour was very distressing for her and his younger siblings. His siblings became scared of Beau and so his GP prescribed a significantly increased dose of anti-depressants to try and manage Beau’s moods.

Beau’s mum needed to have more respite from caring for him, not less. She noticed that her health was declining which put at risk her ability to not only care for Beau, but also his other siblings and the foster children she has taken into her home. She became very overwhelmed at the thought of having to give up caring for Beau.

She made a statement to Beau’s lawyer that was used to advocate to get a better outcome for him at AAT review which included the following comment:

'I want [Beau] to be happy. At [Street], [Beau] is getting the benefits of both the peer-to-peer socialisation and skills for independent living which I regard as very important for him. [Beau] is able to express what he wants and he wants to go back to staying at [Street] every fortnight or so like he was doing. That makes him happy. If [Beau] is happy then it rolls onto us as a family. I think his wishes should be given priority.'

Victoria Legal Aid was able to advocate for an outcome by consent with the NDIA which reinstated most of the funding previously withdrawn although the litigation process in the AAT was unnecessarily drawn out and very hard on Beau and his mum.

Beau now has 54 nights of funding for him to keep using Street for regular respite weekends. He can socialise with his close friends once again and his problematic behaviours with his family have abated.

John – Young boy from Northern Territory community cycles in and out of detention without NDIS supports in place

NT Legal Aid is assisting young people detained in the Alice Springs Youth Detention Centre and Don Dale Youth Detention Centre with their NDIS claims.

Significant difficulties in gaining access to the necessary specialist assessment services as a detainee causes lengthy delays in progressing the status of these claims. This delay often means that the young people cycle out of detention and back into the community without any decisions being made with regard to their claim.

For example, John is a young person who is currently detained in Alice Springs Youth Detention Centre who has been diagnosed with Foetal Alcohol Spectrum Disorder (FASD) and intellectual disability. As John lives in a remote area of the Northern Territory, he was not diagnosed or formally assessed prior to entering detention, despite a number of interactions with the justice system.

When John entered detention NT Legal Aid arranged for him to undergo diagnostic assessment from a service provider in Alice Springs, which is the only provider of assessments in the area. As a result, John was granted access to the NDIS.

John’s diagnostic assessment recommended a number of specialised supports, but these do not exist in Alice Springs. This has caused significant delays in establishing his NDIS plan, as any supports provided to John in detention will need to be delivered by visiting interstate service providers.

In this time, John has been released and subsequently detained again due to re-offending resulting from a lack of necessary supports.

More information

Read our submission

Read about our advocacy

Read about the NDIS Thin Markets project.

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