NDIA Accountability Project

Son's rare chromosome disorder and NDIS support challenges

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To Whom It May Concern,

My name is and I am a carer for my son who is currently 9 years’ old, and he has been on the NDIS for the last 2 years.

(my son) has a rare Chromosome Disorder called Trisomy 8 Mosaicism (T8M). People who have T8M have three (3) complete copies (instead of the typical two) of chromosome 8 in their cells. The extra chromosome 8 appears in some of the cells, but not all. The symptoms of this syndrome vary considerably, ranging from undetectable to, in some cases, severe. This chromosome defect occurs during the baby’s development (in the womb), the organs and tissues affected by extra chromosomes can vary, and in most cases no 2 cases are the same.

As part of condition, the following have been discovered/diagnosed:

  • Peters anomaly - which is a disorder of the eye which involves thinning and clouding of the cornea and attachment of the iris to the cornea, which causes blurred vision. It may also be associated with clouding of the lens of the eye (cataracts) or other lens abnormalities. Due to Peters anomaly on both of eye’s, he can only see 6 / 36, This means that what sees at 6m is equivalent to what a normally sighted person can see at 36m. has also been diagnosed in having nystagmus in both eyes. reading materials should be magnified at all times.

  • subsequent global developmental delay, fine motor skills, proprioception, strength and gross motor development, cognitive development, language acquisition, social skills, and independence in age related activities of daily living.

  • Autism Spectrum Disorder (ASD Level 2)

Specialist Services for [Name]

Please see below the specialists that [name] sees, and how often that sees them.

  • Psychologist - Every 2 weeks
  • Occupational Therapist - Every 2 weeks
  • Speech Therapist - Every 2 weeks
  • Physiotherapist - Every 2 weeks
  • Mobility – Guide Dogs - Every 2 weeks
  • , Ophthalmologist, – Every 3 to 6 months
  • Podiatrist – every 3 to 6 months
  • Orthoptist – Once a year

Before [name] gets a new NDIS plan, every year, reports must be submitted to the NDIS, on what [name] requires and how much the specialists require to give [name] the help that he requires. Every year I provide the NDIS with reports from Psychologist, Occupational Therapist, Speech Therapist, Physiotherapist, Mobility – Guide Dogs, Podiatrist, and Orthoptist.

Since [name] has been on the NDIS, I have had to lodge a review every year with his Local Area Co-ordinator (LAC) as [name] has never been given the correct amount of money that is required.

However, in 2021, after lodging another review of [name]’s NDIS plan as he wasn’t given enough money to cover 1 ½ services, yet alone 7 services. I discovered that the NDIS only read and gave [name] funding on 1 (one) report. Even though the NDIS confirmed that they received all of [name]’s reports. After discovering that the NDIS provided insignificant funds for [name], I took the NDIS to the NSW Civil and Administrative Tribunal. I was also told that the NDIS would supply me with some information on finding a Disability Advocate (DA). I am still technically waiting on this information 6 months after the case has been settled. I managed to find a Disability Advocate (DA) after a lot of google searches.

Due to [name]’s condition being so rare (T8M is believed to occur in one (1) out of every 25,000- 50,000 pregnancies). Not many people have come across this chromosome disorder. So, what I have found when dealing with the NDIS / NDIA is that [name] is put into a category that doesn’t suit [name]’s requirements. Last year he was put in autism spectrum disorder category and according to the NDIA children in this category do not require the hours of therapy that [name] requires. Without [name]’s therapy he will get even further behind from his peers.

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Since going through the NSW Civil and Administrative Tribunal, I have learnt that the NDIS and the NDIA very easily dismiss specialist reports. The NDIA would drag out the process for as long as possible, in the hope that I would give up and settle on the funding that was originally given. The representative for the NDIA would never believe me or my Disability Advocate (DA) on how funding was not enough, and they still refused to read the reports that were submitted. And I got the impression that the NDIA knows my son better than the specialists or I do, and Myself and specialists (which some are at the top of their field) are making everything up. That is why they were refusing the request for more money.

Also, the representative for the NDIA even told me that could play mainstream sport, even though he has a vision impairment and can only see 6 meters and he requires a ‘Specialised equipment: audible sports balls”, as stated in a report from Vision Australia.

  can’t run as a ‘normal’ child as he has low muscle tone,      can also get very easy

distracted. Which is not a good in mainstream sport. He has also been hit in the face quite a few times with a ball, as he can’t see it coming. And since the NDIA said that can play in mainstream sports and not reading reports, funding was cut for sporting events.

In late November 2021, 6 months after we have started with the NSW Civil and Administrative Tribunal. The NDIA asked for more in-depth reports from specialists.

For me to get more reports from specialists, I had to give them a deadline as Christmas was very fast approaching and services close over the Christmas break. So, his specialists had to work ‘over-time’ to provide me with these reports so we could give them to the NDIA just before Christmas. The money for these reports came out of NDIS plan, as the NDIA refused to cover the cost for more reports, even though I was originally told that the NDIA would cover the costs of extra report writing. And since the money came out of his therapy budget, we had to skip a few sessions with each therapist to cover the cost of report writing.

Once these reports were provided to the NDIA, they did not get back to us on their decision until the middle / end of January 2022. They also kept asking us for extensions to review the extra reports. In May 2022, NDIS plan expired. The NDIA granted extra funding so his appointments could continue. During this time the NDIA took a lot of evaluating to grant my son the funds he requires for his services.

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The whole NSW Civil and Administrative Tribunal process took approx. 15 months to get the correct funding for

I also got the impression that the NDIA doesn’t care what mental and emotional toll going through the NSW Civil and Administrative Tribunal can do to the people who care for and look after him.

How I believe these problems can be addressed

The NDIS / NDIA need to read all the reports from specialist when a new plan is been considered. This way the NDIS gets a better understanding of the Child’s needs to ensure they are getting the services that they require. The NDIS also needs to stop putting people into categories, which I thought they were not allowed to do.

I have also had NO help from my Local Area Coordinator (LAC), even though it says in my son’s NDIS plan the following:

‘My LAC will support me to connect, engage and maintain services’

The only time I ever hear from the LAC is when my son’s plan is up for renewal, or I lodge a review due to not enough funds been provided through the NDIS plan. Even then it is almost impossible to get hold of LAC. They don’t answer their phones and I leave a voice message also emails go unanswered. When I finally do get hold of someone, they tell me that LAC has left, and they will get his new LAC to contact me. This can take up to a week to get back to me.

I have lodge a complaint with the NDIS, and I was informed they will help me sort it out, but when it comes to lodging complaints about LAC nothing was recorded and information doesn’t get sent out. And due to me being busy with looking after
I do forget about contacting the LAC.

There needs to be more support for Carers and families of the NDIS recipient. If you do go through the NSW Civil and Administrative Tribunal, it needs to be easier to understand. My Disability Advocate (DA) was amazing, and I have no idea what I would have done without their help.

Thank you for your time.

Kind Regards

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