Introduction

I am -year-old female who has the hidden disability of Hyper Mobility Spectrum Disorder. I live in the region and am a single mother to four children aged and who all have their own disabilities.

The -year-old now lives independently in SDA and the younger 3 live at home with me. My children all have varying diagnoses including Tourette Syndrome, Autism Spectrum Disorder, Anxiety, Depression, Obsessive Compulsive Disorder, Intellectual Disability, Hyper Mobility Spectrum Disorder, Dystonic Posturing and an NRXN1 gene deletion.

My family slowly joined the NDIS from 2016 when it was introduced into the area as diagnoses and evidence was sought.

In 2021, my application to become a part of Disability Advocacy NSW Systemic Advocacy Advisory Board was accepted. In 2022, I completed a Certificate IV in Community Services and in 2023 I am enrolled in a Bachelor of Social Science at University.

It has been my experience that the NDIA is dismissive, demeaning, abusive, inconsistent, traumatic, discriminatory, and contradictory. There is a lack of transparency, accountability, or oversight. The system itself is complex. But navigating the staff and their personal agendas even more so.

In this submission, I will give a brief overview of my accounts, reflecting on lived experiences of the NDIA as a child representative, a plan nominee, and a participant. Overall, my negative experiences far outweigh the positive ones.

NDIA’s Capability and Impacts

The NDIA has immeasurable potential to make a positive impact in so many people’s lives, but it does not. Instead, the agency has a power imbalance over people’s lives, which I experience as abusive and traumatic. In this regard, it fails to support the very same vulnerable cohorts it was built to serve.

Negotiating with the NDIA is akin to war.

There have concerns raised about the scheme’s cost blowouts and fraud. Participants consistently are told that registered providers are better. It has been my experience that registered providers are more likely to be fraudulent and abuse participants.

Dismissive

I have many reports detailing my children’s needs for regular psychology and behaviour intervention due to their disabilities. It appears the NDIA staff that are building plans have disregarded these reports in many instances. They have often refused these supports, advising me to seek a mental health care plan to obtain some free sessions.

My eldest’s mental health decline was a direct result of her physical decline. My son’s behaviours and severe anxiety a direct result of his autism. The NDIA does not accept that we are a whole person, they do not recognise coexisting conditions and refuse to recognise how they interact with each other, the result is a significantly underfunded plan.

Time and time again, I have explained to staff that Mental Health Care Plans do NOT

provide free access and are not for disability related issues, however, the NDIA refuse to accept this.

As a carer of multiple disabled children my ability to work is not only impacted by my children’s support needs, but also my own. I have been forced to live on poverty line like so many others. We can not afford the services. A psychiatrist, was required for my eldest at $650 per session. If it weren’t for the local neighbourhood centre, we’d have been homeless and hungry as a direct result of disability. NDIA would not budge, both children deteriorated with this disservice and the costs were to our family and have been high. A child protection review of my family occurred, that subjected us to multiple lengthy visits and undue stress for them to close our case without any help.

Demeaning Every review, every application, every communication.

We are further disabled as result of interaction with agency, because even though we know ourselves and our needs best, we are forced to use our precious funds to pay for someone else to repeat our words, we are forced to listen to the staff members uneducated opinion about what we do and don’t need. We are demeaned. We are categorised by our disability. Our plans appear to be determined by an algorithm that was ultimately programmed by someone. Whether the algorithm exists and if it does, what the qualifications or experience this person has, is simply hidden behind the smoke screen with other qualitative details, and yet, the assumed algorithm does not work, and plans are not as personalised as they need to be.

The language that we are forced to use to justify and prove ‘reasonable and necessary’ to have our basic human needs met is demeaning, negative, and soul destroying. When will the agency use this ‘reasonable and necessary’ criteria before spending more on lawyers to fight us than the supports that they are denying us costs?

There is no wonder, whatsoever, why a large portion of disabled people experience depression and other mental health conditions when you simply look at the language required to achieve the basic goal of getting a plan that meets your needs, and yet always falls short. How can participants with psychosocial disability make progress when the language used is so pessimistic?

This tells us, we, are not worthy enough. We are not capable enough.

We are not enough.

No Accountability One child’s first plan was $7000 despite the extensive evidence provided to prove they had support needs substantially more than that provided. Overwhelmed with my care load and no guidance or support, I resorted to a toddler sized tantrum and complained everywhere I could. Eventually, months later, I was finally heard. Without apology, or details as to any disciplinary action or further training provided to the staff, my daughter was issued another participant number and new plan, this plan was approved at over $21 000, it was such a relief to be a little closer to having her needs met. The old number and plan hidden somewhere behind that smoke screen that no one break through.

Abusive

My experience is that institutional abuse is the core structure of the NDIA.

As a survivor of childhood and adult domestic violence, I am well versed in abuse after therapy and education. The difference, I can’t choose to step away from the NDIA’s abuse, because if I do, my children and I lose all the supports that help us to survive and achieve the small things that our disabilities prevent. I am trapped by my current abuser.

One of the many abuse experiences was during 2021, my eldest daughter, predominately resided in the local hospital as one day in February, she woke up, got out of bed, stumbled into the hallway with her crutches and collapsed. That was the last time my daughter walked had my daughter’s needs not been neglected by NDIA and had she consistently received plans that met her needs, there is every possibility that she would still be walking today, she could have enjoyed more of her life as a young person if they hadn’t neglected her.

She was taken by ambulance from our house. The ambulance struggled to extricate her down the front stairs with her body ticking violently with her Tourette Syndrome. NDIA had been fighting over the products the ramp was to be built out of. The ramp took over a year and three injuries to my daughter before it was approved. It had to be built out of cheap pine that will need to be replaced in 10 years rather than the hardwood that was recommended that would last the life of the house with proper care.

When specialist disability accommodation was applied for, the NDIA continually placed roadblocks in the way. First, they declined without feedback. They had all the reports from the previous years, and information from the hospital about her current condition.

They provided a plan review that resulted in a months’ worth of funding for a plan period of three months. The NDIA advised us to use homeless services of which she did not qualify. Her mental health plummeted as she was isolated with hospital Covid restrictions.

On the 6th August 2021, I attended the NDIS office. I managed to get the attention of a staff member. He continually stated the process and timelines. I stated we were beyond those timelines now. I told him that the way NDIA treated us, I felt we would be better off dead, his response “you do what you feel you need to do”.

Then, the specialist home panel, of whom the NDIA refuse to provided details of member’s qualifications that allow them to make such substantial decisions that affect a person’s life extensively. The first issue, there is no details of her spinal injury, where this issue arose from is still unclear, although it was clear they had not read the years of reports, especially a recent one that stated there had been a gene deletion located which is directly linked to functional issues, there was no spinal injury.

The specialist home panel also consistently pressured her to accept a “group home” style of accommodation rather than an individual unit. This is despite the NDIA consistently advertising “participants have choice and control” and in direct violation of the United Nations Declaration of Human Rights Article 25 “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control”. Not only is there clear reports stating that she is not suitable to live with others, she did not want to and it was not an acceptable standard of living for her well-being.

Inconsistent

The easiest, most transparent way to show the inconsistency is with the table below. This is what just two of my children’s plan amounts have been over time with no changes to their listed disabilities or home life.

“ Plans with transport funded.

The next issue roughly a month later, an email asking what wheelchair bound means. The report clearly stated that she is now a fulltime wheelchair user at the top of the same report that also used the term wheelchair bound, stated unable to weight bare, and unable to sit upright. This was just another delay tactic to attempt to shirk their responsibility and leave her trapped, isolated and her disability needs further neglected as she was unable to access her capacity building therapies with the covid lockdowns, and the hospital would not assist as it was not a medical need. She continued to lay in a hospital bed deteriorating and despite the urgency being made known, the NDIA had no urgency to resolving the issue.

Then, they wanted to modify my house. My house was already overloaded. I had 3 children sharing a room as this daughter needed her own. She wanted to be independent, she needed to have quiet away from the chaos.

The manager of gaslighted me with “You are misinterpreting the legislation” when debating transport. That fight went to AAT where not only did they pay a lawyer to fight it they gave higher than what had originally been requested. I was also told that I was wrong when I called him out for gaslighting.

I felt bullied to settle that AAT case in 2020 as NDIA would not provide my daughter with an adjustable bed while at AAT. I highlighted that with her severe vomiting from tics in her stomach, she was at serious risk to choke to death in her sleep, their response was, “you will have to decide what’s more important then’’

Inconsistent

The easiest, most transparent way to show the inconsistency is with the table below. This is what just two of my children’s plan amounts have been over time with no changes to their listed disabilities or home life.

YEAR CHILD 1 —born YEAR CHILD 2 — born

2016 15 989.43 2016 -

2017 11 748.17 2017 -

2018 9 930.80 2018 f 938.48

2019 22 432.90 2019 38 348.55

2020 14 717.11 2020 9 381.35 *

2020 103 148.83 * 2020 60 509.66 *

6/2021 29 316.351 4 6/2021 44 870.45“

9/2021 78 758.51 9/2021 61 205.00

9/2022 342 674.89 (2-year plan) “ 9/2022 221 517.79 (2-year plan)

11/22 350 822.47 (2-year plan) * 11/22 223 661.89 (2-year plan)

“ Plans with transport funded.

In 2018, my -year-old was denied any core supports as it was deemed ‘parental responsibility’. Another family with a child the same age was provided a substantial core supports budget. My family, 1 adult, 4 children and 3 of which were NDIS participants at the time. The other family, 2 parents, 3 children of which 1 was a NDIS participant.

The National Disability Insurance Agency (NDIA)

The NDIA’s 1800 number is inefficient and inconvenient. It is time consuming and inconsistent. When you ask for some verifying information, it will largely depend on who is answering your call.

Over the course of the week, I tried to gather information on whether I could purchase a particular item. I enlisted the support of friends to also contact the 1800 number. From 15 calls, we were given 7 different responses.

Plan funding information varies depending on who you are. The information I receive and can see in the portal is vastly different to that of which my support coordinator can see, and different again to what the plan manager can see. Recently, it was also vastly different to what the planner wrote in an email to me.

Plans from LAC’s and NDIA are also vastly different. LAC plans are generally substantially lower than a plan provided by directly negotiating with a NDIA planner, and yet they take so long to approve whichever you are allocated.

Discriminatory

As above, -year-old was declined core supports because of his age, deemed parental responsibility. In my opinion, this is a clear case of age discrimination as the impacts of his disability to himself or the rest of the family appeared to not have been considered.

This age discrimination occurs regularly for supports. Whilst the legislation states that NDIS is for disability related costs where children are involved, they will routinely cite “parental responsibility”.

Disabled children cost more, have more appointments, and often restrict parents from the ability to work. NDIA will then discriminate us by telling us that is what carer allowance is for, but NDIA won’t pay for everyday living costs.

If carer payments are for disability related costs, what is for living costs?

Transport is another section that is often subjected to age discrimination with ‘parental responsibility’ wrongly cited, disabled children have so many more appointments than typical developing children, their needs vastly impact on available time constraints and their behaviour is often not well received by the public and therefore, when we need to go, we need to go now, not in half an hour if the bus decides it will show up.

Contradictory

The NDIA appears to be giving different information to participants and providers. It has implemented ‘Operational Guidelines’, that contradict the legislation and staff will tell participants and their families direct lines that contradict not only each other but also the legislation that the scheme is built on. For instance, pool entry fees are listed as an everyday cost and not funded in plans, however, with our disability, hydrotherapy is more effective and safer. Prior to having hydrotherapy, we would swim at small waveless beaches as we can not afford the luxury of the pool. Therefore, as per the legislation, it is a disability related cost and not an everyday expense for our family.

Planners will say one thing to participants even in writing and do the complete opposite. Staff saying one thing and doing another is more common than not. On the 5th of October 2022 I received an email of this very nature stating it was an “amended email” with the correct details now.

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The NDIA has also allowed multiple providers in the region that were not around prior

to NDIS to be approved for Temporary Transformation Payment in contradiction of the legislation, they also allow providers to charge a service establishment fee, yet neither of these are considered when building participant plans leaving them with less supports over the life of their plan.

Traumatic

All of these fights are traumatic in their own right. However, my most recent argument with NDIA has left me dumbfounded.

In December 2021 I was provided a wheelchair that was scripted by a NDIA registered OT, thats influenced by a NDIS registered supplier. It was a lengthy wait to be approved, I was looking forward to having improved access to the community with my family.

What I got was a nightmare. The chair poor quality and not suitable for intended use. I attempted to return it, and had numerous discussions until August 2021, eight months later. During these interactions, received weeks of abuse from the supplier, during communications with statements that included “I am not aware of any issues with the chair” after discussing 3 with him personally, as well as “As you must be aware your not the only person in or that require our services” and differing numbers that the wheels were to be inflated to over the course of the 9 months and telling me that I must have heard wrong even though I put these into notes on my phone so that I don’t get confused. When I told him that I had sought information he demanded their details of which I refused, he then told me that how can he know that they even know what they’re talking about. I copied in NDIA and the OT into these exchanges, and neither assisted, and despite my instructions to him to keep these people included in emails and not call me, he continually removed them and called me.

I filed for NCAT, alerted the fraud team and Quality Safeguards. No one came to my aid. I was left to fight alone, meanwhile another wheelchair request was denied as “duplication of supports”, I was already at AAT, and no assistance was rendered there either. NCAT, made it difficult for me to comply with their demands for submitting evidence being that I needed to print three copies of all evidence. collate them identically, include a content list and labelling each item as per the content list, and hand deliver them to the tribunal, have them verified and deliver one to the supplier. I made complaint to the OT’s company, they acknowledged that they would refund the chair, I forwarded the correspondence to NDIA as part of ongoing review in conjunction with AAT. Again, I was denied a new chair based on what the OT had originally written and “duplication of supports”. I still have the $10 500 power assist device for the wheelchair now with no chair to attach it to. I still live with reduced access to community, and I feel more unsupported and unprotected than I ever have, once again a government agency established to help and protect the public fails me dismally.

No Transparency or Accountability

The NDIA’s 1800 phone number, the enquiries and feedback emails are the biggest smoke screens the agency has. It seems the agency hides behind these screens. Staff can make decisions that have dire consequences for participants and yet, participants are not even provided a direct contact decision-maker. There is no direct contact and these initial contact points have nothing more than another generic email to forward details to. Complaints seem to go nowhere, and when they are responded to it can be months or up to a year later with no outcomes, this is also with quality safeguards, I made a

complaint that a registered service provider was regularly missing scheduled supports that were written in a service agreement in November 2021, on the 10th December 2022, I received calls and emails regarding how they intended to deal with the complaint given that

“On this occasion, taking into account the concerns that you have raised and the time that has past, the NDIS Commission may be limited in any meaningful action it can take to address and resolve your complaint issues”, therefore, the time they took to action my complaint has left my complaint useless and unresolved. So once again, we are reminded, we are not worthy enough.