The biggest waste in the NDIS doesn’t come from decisions made by participants.
It comes from decisions made about us. The best way to get the scheme back on track is to start making better decisions, at the system level and at the level of individuals.
The NDIS will not be able to make good decisions that lead to social inclusion if these decisions are based on factors other than what individual people need.
Barriers to inclusion are individual, they are not based on impairment or diagnosis. If you have three people with the same diagnosis the barriers they face to social inclusion are very different. The new Bill removes the possibility for planning based on the whole person. I acknowledge amendments in this area, but they have not resolved my concerns.
The most recent amendments persist with the idea that people access the NDIS for a specific impairment. This is not how the current legislation works.
The current law considers that a person has a disability, which may consist of a number of impairments.
The NDIA has not been applying this law. They have been insisting that they only fund primary or eligible disabilities and this has been criticised by the Joint Standing Committee on the NDIS. The NDIS Review also stated that there was a need for moving away from this approach.
There are many serious impacts of this aspect of the legislation, that in conjunction with the introduction of classes of participant and classes of support will fundamentally change the NDIS. However, more importantly, they will see the extent to which the NDIS can actually lead to inclusion in the lives of people with disability sharply curtailed.
Consider the following fictional examples:
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Tony
Tony has a spinal cord injury as a result of a car accident when he was 29. Before his injury, Tony struggled with mental illness and received a lot more support from his mum than most people his age. Tony’s injury impacts his mobility and his self-care. But it also leads to even more serious struggles with his mental health. He’s staying home all the time and his mother is now providing round the clock care for him as he is threatening to end his own life.
Tony’s mum helps him apply to the NDIS. She is exhausted and finds the process very hard. Tony is accepted into the NDIS. His support needs associated with the spinal injury are assessed, but his mother and he spend most of the time in the support needs assessment talking about his challenges with mental health. He is allocated a slightly elevated support package than someone who does not have mental health issues, but he is told he is unable to use his ‘flexible’ funding for psychology because this ‘class of supports’ is not available to the ‘class of participants’ he belongs to.
Tony accesses a mental health plan and gets ten subsidised sessions, but his mother, who has quit work to care for him, can’t afford the gap for more than a couple of sessions so he does not get mental health care. Tony develops a dependence on alcohol to manage his mental health symptoms and pain, and becomes violent towards his mother.
Adrienne
Adrienne has a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS). As she has gotten older, she experiences more challenges with her mobility and starts using a walker to help her get around. People with EDS are much more likely to be Autistic, and Adreinne is no exception. Adrienne has a lot of trouble with social skills, but not to the extent that she has sought out disability specific supports before. She has never been able to work full time, but volunteers at the local animal shelter a couple of times a week and
Adrienne’s Case
is engaged with an employment service and completing a course at TAFE with their assistance.
When Adrienne started using a walker, she was no longer able to volunteer at the animal shelter as her walker is too hard to push over dirt and grass. The walker she was able to buy second hand is also too heavy for her to easily get onto the bus to get to TAFE and the hassle of transporting her mobility equipment makes the journey – which was already hard for her because of the noise and crowds – too difficult. One day, Adrienne has an outburst at the bus driver because she is in sensory overwhelm and in pain and struggling to manage her heavy walker on the bus. After this, she is too embarrassed to keep catching the bus to TAFE.
Adrienne applies to the NDIS and they give her access ‘for Autism.’ She is given a plan that includes access to a class of supports deemed suitable for Autistic people. This includes $15,000 of behaviour support planning to manage “outbursts.” This is a stated support.
Adrienne is told that she cannot use any of this $15,000 to buy a new lightweight walker that she would be able to manage on the bus, and would have bigger, wider wheels allowing her to go outside at the shelter with it. This walker costs $2000.
––Ben
Ben is a 9 year old child with intellectual disability and Autism. When Ben was accepted to the NDIS, his disability was not listed correctly by the NDIS and just Autism was listed.
Ben’s mother does not know what impairment Ben met access for. When she takes him to the support needs assessment, she begins talking about the impacts of his intellectual disability. The support needs assessor informs her a total funding amount of $23,000 has already been calculated based on a diagnosis of Autism level 2, but that because Ben also has an intellectual disability, he can increase the
Funding Allocation Based on Disability Classification
funding slightly because the intellectual disability impacts the accepted disability of Autism.
Ben’s best friend Toby has an intellectual disability and Autism. When his applied to the NDIS for him, intellectual disability was listed first. Autism was not listed. Toby is told that the total flexible funding that can be allocated is $42,000.
Neither Toby’s dad, nor Ben’s mum remember being asked to ‘pick’ a disability for their sons, they both remember putting both down on the paperwork and providing evidence for both diagnoses.
Case Study: Sandra’s Experience with the Justice System and Housing Crisis
Sandra has an intellectual disability and is very dependent on her partner Tom. She gets some NDIS supports, about one a week a social worker comes and checks in on her and helps take her to medical appointments. One day, Tom asked her to drop a package at his friend’s house and Sandra who does a lot of little errands for Tom because she likes catching trains around the city, agreed to do so. The police raided the house a few days later. It turned out the person Sandra had delivered the package to was a undercover police officer. Tom goes to jail for a long time for commercial drug supply. Because Sandra is his co-offender, her sentence cannot be significantly different from his. She ends up spending 6 months in jail. She is released from prison.
The house that she was living in with Tom has been emptied and re-tenanted. Sandra has nowhere to go and the local women’s shelter does not admit people who are exiting prison. The prison staff gave Sandra some details relating to temporary accommodation, but Sandra lost the number. Sandra ends up knocking on the door of the house where she used to live to ask to stay and the police are called.
Sandra ends up back in the police station. Someone suggests that maybe she has an NDIS plan and contacts a liaison officer. The liaison officer discovers that Sandra’s NDIS plan was cancelled
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because she refused to respond to an information request within 90 days during the time she was in prison.
Brendan
Brendan is a gay man with cerebral palsy who uses a wheelchair part 时间. He works for the ABC.
One day, he makes a series of social media posts about local talk-back adio host Blow Hardie being homophobic. As a result, he becomes subject to a vindictive campaign by Hardie for being a ‘disability faker’ and uses this to push his favourite cart about the ABC being run by ‘freaks and leftists.’
Pictures are published in the Daily Telegraph of Brendan not using his wheelchair and the NDIA and minister are flooded with complaints about him being a faker.
The NDIS writes to Brendan asking for access to all of his medical records. Some of Brendan’s medical records are kept at the local sexual health clinic, and include lots of details about his sexual risk factors as well as his HIV positive status. Brendan is dealing with a lot of stress and paranoia after the media took his photo without his permission. He doesn’t send his medical records to the NDIA and instead asks if they could let him know which specific parts of his medical history are in question.
They don’t get back to him, and instead, 90 days later revoke his access to the NDIA.
I could keep going.
Disabled people, whether you like it or not, have full complex lives. Whatever issues impact non-disabled people, also impact us. We go to prison. We have mental health episodes. We excel in our careers. We parent children. We parent disabled children.
An NDIS that doesn’t recognise the full complexity of our lives can never work towards our inclusion, because the barriers to our inclusion are part of the context of our lives.
What each of these people described above need is an individualised plan to address barriers and include them in society. While it’s not the current practice of the NDIA, that is the current legislation that governs the NDIS. Plans are individual, supports are reasonable and necessary and a disability refers to the sum of a person’s impairments.
Losing that orientation towards individualised support means losing the NDIS as we know it. Disabled people know that the NDIS needs to change. Anyone interacting with the NDIS knows it needs to change. But knowing something needs to change, is very different from agreeing with a particular plan for change.
This plan for change risks taking the individual out of the NDIS and replacing that individual focus with a dehumanising assumption that bureaucrats or ministers know what our support needs are, based on what another bureaucrat listed on our file.