A father's story – It takes over 5 months for the NDIA to fund what they agreed to at the AAT

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A father's story – It takes over 5 months for the NDIA to fund what they agreed to at the AAT

Over 4 years ago, an occupational therapist and behaviour support team undertook sensory assessments and recommended that a sensory room would likely provide the most effective means to allow the girls to self-regulate their sensory needs. It was recommended we install one in our house, with a LED musical touch wall and a bubble column with mirrors.

Read about a father's story fighting for his daughters’ quality of life.

My wife and I have two daughters who are 17 and 15. Both my daughters have severe autism. They are unable to speak and have an intellectual disability. They both have NDIS plans. Due to their sensory seeking behaviours, they engage in harming behaviours, including self-harm. For example, they both bang their heads on walls and doors.  

Over 4 years ago, an occupational therapist and behaviour support team undertook sensory assessments and recommended that a sensory room would likely provide the most effective means to allow the girls to self-regulate their sensory needs. It was recommended we install one in our house, with a LED musical touch wall and a bubble column with mirrors. 

This was just before the NDIS was rolled out where we live in regional Victoria, so we were unable to get it funded then as services were waiting for the NDIS to arrive. As soon as it arrived, we applied for the NDIS and the girls were placed on plans with a range of supports, but the NDIS refused to fund the sensory room.  

After an unsuccessful internal review application, in mid-2018 we appealed to the AAT. VLA acted for one of the girls at the AAT. We didn’t get to final hearing, as after 12 months of negotiations and providing many reports, assessments and quotes, in August 2019 the NDIA agreed to fund the sensory room. We agreed to consent orders in the AAT that reflected the cost of the equipment and installation needed. We were so relieved. 

However, my relief was short lived, as despite a new plan letter being sent 3 weeks later which referred to the sensory room, the new NDIS plan didn’t actually include any funding for the room. The NDIS portal told me I had $0 to spend. I followed up with the NDIA time and time again but was told no one knew what was happening or I was referred to the NDIA head office, who also couldn’t help.  

At one stage I was told that we needed to get an assessment and report from an occupational therapist to provide to a NDIA assistive technology assessor. I was so confused that the NDIA wanted another report to make the funding available. They had these reports before they agreed to pay for the room. Why did they need another report when there was an order of the AAT? It was a complete paradox. 

By January 2020, 5 months after the AAT order had been made, we still couldn’t get the NDIA to actually make the funds available, and I was at my wits end. We had made an internal compliant and an Ombudsman’s complaint, and I went back to VLA to see if they could help. It was only then that someone within the NDIA worked out that if they switched the plans to self-managed, I could buy the equipment and claim reimbursement. After 5 difficult months of uncertainty, that is what I ended up doing. It worked out for us in the end, but not everyone has $12,000 in the bank to spend upfront and then wait to be reimbursed. 

It seems to me that there is no mechanism within the NDIA to translate what is agreed at the AAT into an NDIS plan which can actually be used. We were able to get the sensory room in the end only because we could afford $12,000 upfront, but I imagine other families or people with NDIS plans are not so fortunate. It also took over 5 months from when the AAT orders were made. 

I cannot express how happy I am now that we have the sensory room for the girls. It has genuinely helped to reduce the incidents of self-harm for both girls. When I look back at the process, if the NDIA has just agreed to fund the room to start with, or at the very least when they agreed back in August 2019 at the AAT, so much harm could have been prevented. It is my daughters’ quality of life which is at stake.  

 

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