My Journey With NDIS

I want to remain anonymous because I am not a participant. However, I have children who are.

My journey with NDIS has not been an easy one. We started in 2018/19 when my then 3-year-old son was diagnosed with Autism Spectrum Disorder (ASD), Level 3. From the beginning, it was a fight to get an access request form. I had to contact the ECEI Partner in my area, who are . Once I contacted them, it would take six months for someone to contact me to get the access request form.

SIX MONTHS to get a FORM!

I made several complaints, and about two weeks later, I had the access request form emailed to me.

We got to our plan meeting, and although the girls that came to see us that day were lovely, it was apparent that they had no real intent on helping us. They told me that NDIS does not fund nappies and other consumables from the start of the meeting, which I KNOW is incorrect because NDIS send out the planning booklets. They TELL you to go to the website and read up about the scheme, which I did. I handed them my reports from therapists as we started therapy after diagnosis (which was in November 2018, and the plan meeting was in March 2019). The response I got when I handed the reports to these girls was, “Oh, you’re very prepared” meaning, they weren’t expecting me to have all these reports ready.

The reports got put aside, and they do pedicat questions to get to know my son and our family and what we need. What I wasn’t prepared for after the plan meeting is the fight that was about to come.

We were told several times that sensory ‘toys’ are not funded because there isn’t any evidence around that they work. This is where you begin to learn that NDIS love semantics. They want you to use their terminology, such as Assistive Technology. Instead of ‘sensory’, you use words like ‘emotional regulation’, ‘tactile’, ‘auditory’, etc. These sensory items ARE allowed to be funded; you need to know the right words to use. I had several email exchanges and phone calls once realised I was cluing in and reading legislation. Also, there is loads of literature and evidence about such items. Several sensory shops are registered providers with NDIS and need to be audited by them. Why would they be registered and go through this process if their items are not able to be funded?

All this back and forth goes on, and it is unnecessary because, at the end of the day, they have zero rights to make decisions on Reasonable and Necessary (R&N) supports! They do, however, ‘build’ the plan to be submitted to the planner, which you have zero control over or have access to it. So, you have no idea what they are including or excluding. By this stage, I was fuming and had already made several complaints, complaints to my local MP, and the AAT to get advice. Their advice was to wait till the plan came in.

Once I received my son’s first plan, it was severely underfunded. A ridiculously small Core budget was allocated to make visual cards (PECS), but no funding for AT or Consumables and the Capacity Building budget was only enough to last six months’ worth of therapy with my son needing weekly Speech, OT, and Psychology, and a Dietician for his limited diet.

Experience With NDIS

Because I wasn’t aware of the process at the time, I raised an immediate review with NDIS and also put in an application with the AAT. With the application to the AAT, that was when I first heard of Disability Advocates, and I got in touch with our local branch. Because I had not gone through the proper internal review process, we only expected that the AAT would request a quick review from NDIA. However, a day before the conference was due, the AAT NDIS Lawyers contacted me to settle. It ended up going in my favour. By July, I had an adequately funded plan to last 12 months’ worth of therapy and a decent Core budget for AT and Consumables.

This experience alone already told me that the system is broken.

The mental and emotional toll this had on me was astronomical. I had to learn about the world of Autism quicker than most people because I had to fight a system that was letting my son down.

If the tables were turned and I made all these delays and underfunding choices as a parent and made my son suffer as a consequence, I’d have child services at my door and be under investigation for negligence. However, because it’s the Government, they are allowed to do this to my children in the name of ‘this is what we think your son deserves.’

May I remind you that my son has rights as a human. He deserves to be treated with dignity, respect, and equality. He was three then and almost six now, and thankfully, he is still blissfully unaware of what Autism is. I know the day will come where he will understand, but I’m hoping that it’s later rather than sooner because I don’t want my son to be hurt by this system or let down the way I have.

But this brings me to why I am here, writing this submission. Since learning about Autism, thi also clicked about behaviours I was facing with my other children. My son was my fourth child out of five. To date, all five children have been diagnosed, and I have three children as current participants on NDIS, with the last two about to apply.

The Independent Assessments appear on the surface to be about fairness. From my experience, I understand the want and the need for fairness. However, these proposed mandatory IAs with a 20-minute observation are a complete and total violation of my children’s lives and rights to privacy.

If this were a process for those who could not afford private assessments to gain access to the scheme, it appears to be a fair process.

However, when we look at things like ‘consent’ and ‘assessment’, we generally get to choose who does this and provides services. If we do not click with an Allied Health Professional or feel that they cannot help with the complexity of needs, we have every right to move onto another professional and find the right ‘fit’. This is incredibly important, especially with my son and the complexity of his needs. There is no point in having a Psychologist who isn’t experienced enough to deal with an ASD child like my son. It’s wasted time and energy, and this has already happened to us. The first Psychologist we saw was honest and advised that his needs were out of her depth, and we moved to a Psychologist with more experience. We do this because if someone is going to assess my son’s needs accurately, they need to understand him. It usually takes several sessions, assessments combined with experience and knowledge in their field to make recommendations.

Concerns Regarding Mandatory Assessments

However, the proposed IAs that NDIS want to implement removes consent by making this a mandatory process. If you refuse, you lose funding or are taken off the scheme, and it’s by a complete stranger that may or may not have relevant experience with ASD or the complexities that go with it; then, add on top of that, it disregards what his current therapists already recommend.

The observation is a complete and total violation of their right to privacy.

Our home is my children’s safe space. It is where they know they can be themselves without judgement. Therapy is not an easy task for my children either. It takes time and several sessions for my children to be open and trust people. They also do not comprehend things on a level that you or I would because they are Autistic. To give an example, ‘masking’ is one aspect of Autism that my children do. Masking is being able to do something or be compliant because you know you have to do something, but inside, they are scared and anxious, and that leads to an eventual meltdown. When you force an ASD child to do something, you escalate those feelings. This is WHY we do so much therapy. This is WHY we use sensory items because it helps them calm down, and it helps them express their wants and needs. But most of all, it allows them to communicate when they are unsafe, when they are not OK, when they don’t want to do something and when they do. It’s how they learn consent.

When you remove consent from the process, you are eliminating choice and control.

When you make a stranger that cannot adequately assess them using ‘standardised tools’ that they may or may not be adequately trained in, that cannot even adequately assess them, and force them to be observed is an act of disrespect. It’s undignified, and it’s inhumane. As a parent, by age 14, our children start to have rights to medical privacy. Even we can be shut out of specific processes because of their rights. So, how then can NDIA override that with mandatory assessments? How can NDIA override my authority as a parent to consent to my children’s rights and privacy and keep them from harm with mandatory assessments?

We already have teams of professionals that know and look after the health and wellbeing of my children. There are at least six professionals in their lives at any given time (Paediatrician, GP, Speech Therapist, Occupational Therapist, Psychologist, and Dietician). How on earth can one stranger who ticks off yes or no boxes and watches my children for 20 minutes have the same level of knowledge, expertise, and experience with my children as these six various professionals do?

NDIA say that in the review process that your therapist reports will also be considered, but they have made it quite clear that the Independent Assessment results are all that matter.

As per the below screenshot: “If your independent assessment shows you no longer need the NDIS, the assessment will help show the gains you have made in your functional capacity. Information is already available for participants who are leaving the scheme.” https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-process

By the end of 2021, we wilt be using independent assessments as pa rt of our normal plan review process with participants.

We will refer you for an independent assessment at important points, such as whe n you:

• are approaching a new life stage, for exa mple starting school, or preparing to enter the workforce
• have a change of circumstances
• request a plan review
• have stable supports and would like a longer plan
• have supported independent living supports in your pla n
• are having your NDIS access reassessed
• are preparing to transition ou t of the NDIS.

The NDIA will pay for your assessment.

Once you have had your assessment, we will contact you to talk about wha t happens next. In most cases, it will be the beginning of a plan review conversa tion.

If your independent assessment shows you no longer need the NDIS,-the assessmen twi ll help show th gains you have made in our functional capanty. ln!ormat1.o 1s already ava ilable for partic ipants who are leavin the Scheme.

You can use your assessment as a starting point with your Local Area Coordinator, Early Childhood partner or heath professional when work ing out what supports you ’d like after you leave the NDIS.