The slogan of Australia’s National Disability Insurance Agency, the organisation whose goal according to their website is to “support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers.”. Sounds good doesn’t it? But as always there is a catch. The “better life” that they are willing to support has to be “value for money”. In other words, there has to be a return on investment for the funding the NDIS provide. A disabled person or child whose is considered a “dead end” in terms of funding is not considered value for money and would not get the support they need.
Up until my interactions with the NDIS I never thought of Diyanna’s existence was quantifiable with money or that she needed to be a return on investment. We have been with the NDIS since 2019 and our experience with every aspect of the agency has been degrading, stressful, misleading and counter productive to what was supposed to happen.
With Diyanna’s diagnosis in 2016 we were hooked up with Disability Queensland the state-run body handling children and adults with disability. That was the start of our journey. We had just finished the renovation our home in Murarrie and was coming to terms with what had happened to Diyanna and what her condition means. By mid-2017 Diyanna condition was worsening. 300+ seizures a day coupled with constant dystonia and developmental delay meant that our attention was on getting her the right medications and not really focusing on her future needs. It was more of right here right now.
Towards the end of 2017 Diyanna seizure reduced giving her brain space to interact with us. In our appointments with the OT we talked about the future needs for Diyanna. The care she will need, the possibility of schooling, the therapy requirements and finally home modifications. At this time, we felt that with the support of my parents we would be able to care for her 24 hours a day and do the daily therapy sessions with guidance from the physio, OT and speech even thought this would stretch us. We didn’t even consider schooling as we were not sure what to expect with Diyanna as at this point it was not medically safe for her to attend school. The home modifications were a different matter.
To help us identify what we needed to do to get our home liveable for Diyanna DSQ recommended we meet with an Occupational Therapist from Anglicare. She came to see us and assessed the situation. According to her we would need a lift, a new bathroom, wider doorways, multiple ramps and make the garage bigger. A wheelchair accessible vehicle was also recommended. The cost of such modifications would be immense.
Based on her report we asked a builder who knew our situation to give us a quote. To do everything that was recommended to the standards that met disability regulations in Australia. The costing came to a minimum of $200,000. This did not include costings for the draftsman, engineering, plumbing or contingencies. On top of this the carriage for the lift came at around $60,000. This was not a simple funding matter. Given that I had to cut down my work hours to care for Diyanna extending our bank loan was not an option. We tried various charities and organisations to help with funding but were turned down because Queensland was in the middle of the NDIS rollout and they were supposed to help with these situations. We were told that Diyanna would be in the program by mid-2018 and should have access to the funds to help with all her needs. But as with any Government organisation there were delays.
In march 2018 I organised a gofund me page for Diyanna to help expenses that kept coming to give Diyanna a quality of life. The funds were used to help the immediate modifications we needed. Which was the multiple ramps to get her wheel chair in and out.
At the end of 2018 we still didn’t have access to the NDIS. DSQ had stopped its support. Diyanna had no therapy or formal support structure. This was when my on-going battle with NDIS began. After calling the agency multiple times we finally got our first meeting with them mid-November of 2018. When I spoke about the recommendations of the home modifications and the vehicle, we were told that it would not be a problem. Diyanna only got access to her funding in February 2019.
As most of you know 2019 was a tough year. All of us were stretched keeping Diyanna alive, helping my dad through his surgery and radiation and being pregnant was stressful. Dealing with NDIS to get basic access for Diyanna was heart-breaking.
The first barrier they threw at us was the wheelchair accessible vehicle. We were told that we could not buy a second-hand vehicle that was already modified. Why? Because the NDIS would not take responsibility to replace or maintain the equipment inside a second-hand car as they didn’t know its condition and that it was not value for money. What did they want us to do? Buy a brand new or a near new vehicle that was already modified. This would cost us $80,000 to $90,000. So, no it was not an option for us. The second option was to find a brand new or near new vehicle that can be modified. And apply for the modifications in the next plan. That’s what we did.
Heading into the last trimester of the pregnancy I was struggling to care for Diyanna. I couldn’t feed her or carry her up the stairs. I couldn’t carry her to the hospital visits. I had fallen down the stairs trying to get to her during a horrible seizure episode putting Gabriella’s life in danger. At this point both the physio and OT recommended that NDIS increase Diyanna’s funding to get extra help to care for her. To which their response was that my pregnancy had nothing to do with Diyanna’s disability. Hence there was no need to increase funding. We didn’t have a stroller, a feeding chair or a car seat for Diyanna at this time. She would have her meals on my lap or with Dinesh. She was carried to her appointments and to church, she would sit on my lap or Dinesh’s lap or on my mother’s lap when we had to take her in the car. Any sane person would recognise that being pregnant meant I was unable to care for Diyanna but to the organisation that is supposed to “support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers.” it was not reasonable or necessary or value for money. In addition to this they requested us to get a new set of recommendations by an OT for the home modification. She came with the same conclusions as the previous OT. We were now in October 2019.
When presented with this information with the original quotes we were asked to get new quotes by “NDIS approved builders” we tried several builders of which only one turned up and said that the original quote was correct. He along with the representative for NDIS said that such modifications would not be funded. To top it off we were told that Diyanna would need to start school and that NDIS would stop her supports as she is of schooling age. There was no school that could accommodate Diyanna’s medical needs and the constant one on one support close to us.
Coming close to Gabriella’s birth the pressure was mounting on us to make a choice. Recommendations were made to find another home close to a school that could work for Diyanna in the future. Both the OT and the NDIS representative were aware that we were not going to be able to find a home that worked for Diyanna. But we were told that as long as the modifications were less than our current home NDIS would fund it. NDIS finally increased some of Diyanna’s funding when I had a Cererian for Gabriella. My parents leaving to Colombo for a few months also helped in getting access to the extra funding.
Based on the information we did what we had to do. We found a school which understood Diyanna’s medical condition. We sold our home and after visiting 22 different properties, (none of which were going to work for Diyanna without significant modification) giving offers to about 5 different properties we found a home. All this in the middle of the pandemic. To top it all off the pandemic changed our support structure for Diyanna. My parents who provided approximately 16 hours of care for Diyanna a day were taken out of the equation. To get that type of care based on the NDIS complexity scale would cost us $300,000 a year. To the NDIS such funding is considered “not reasonable or necessary or value for money”. Our only saving grace for Diyanna’s care has been the working from home arrangement Dinesh got from work because Diyanna is a high risk.
Since then it’s been a constant back and forward between us, the OT and the NDIS. Plans, recommendations and quotes were sent based on what we were told. Only to be asked for more information. Once we give what was asked NDIS comes back asking ask for more with each process taking a month to 3 months. The bottom line from each conversation is that we haven’t given enough evidence to show that its value for money.
Even though we have done everything so far according the recommendations of the NDIS representative the agency still insists that its not enough. Its as if they want to drag it out as long as possible in the hope that Diyanna might die. To inflict pain, anguish, anxiety and suffering to Diyanna and everyone that cares for her.
In the words of Diyanna’s OT “Diyanna requires 24-hour monitoring and medical care at home. Her medical needs are significant, including management of frequent seizure activity which can cause her to vomit, choke and stop breathing, frequent suctioning to prevent nasal drips which could result in aspiration, monitoring of her temperature due to her inability to regulate her own temperature which can trigger seizures, management of her posture which is critical to maintaining an open airway due to low tone around Diyanna’s neck, tongue and jaw which results in obstruction of her airways, management of Diyanna’s uncontrolled dystonic movements which cause her positioning to change quickly which then puts her at risk of suffocation. For this reason, someone must be with Diyanna at all times monitoring her breathing and positioning. At times Diyanna requires the immediate support of two carers, particularly when she is required to be quickly repositioned due to seizures (i.e. removing her from equipment such as her standing frame or gravity chair to allow her to be positioned in the recovery position), administer emergency oxygen, rescue medication following prolonged, life threatening seizures and suctioning. Immediate support from a second carer would not be possible if she were living on a different level to her parents and they were required to access her via external or internal stairs. As she grows bigger this will be a lot more challenging. In addition, Diyanna’s medical condition means she is at significant risk of her medical needs changing quickly, requiring immediate medical attention such as CPR. Therefore, it is vital that she have immediate access to her primary carers – her mother and father. Without immediate access it may result in a medical emergency or death.”
Can you put a price tag on life? I don’t think it’s possible but that’s what NDIS has done. A price tag depending on how much the disabled person can give back to society. Children with profound disabilities who will never be able to function independently in society is a waste of funding to the NDIS. Helping families with children like this is not a priority. In fact, it has been published that the current government wants to cut funding further. I know many families with children like Diyanna who are in the same situation or who are worse off than us.
Families like ours have no other organisation to turn too. We have talked to our local MP, the ministers office, the shadow minister’s office. But we keep going round and round in circles. While they argue, mislead and posture children like Diyanna suffer. Their lives are put more at risk with each passing day. Their families dehumanised and traumatised.
Diyanna’s school is wonderful. They understand her and are working with her at her own pace. Since being able to have weekly therapy sessions Diyanna has improved. She is more vocal and moves a lot more and is gaining strength and tone. But instead of seeing the progress, instead of helping Diyanna grow and flourish the NDIS is now actively hampering her growth and quality of life. “support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers.” These are just empty words by the NDIS. They don’t support a better life but create a nightmare scenario for families, making their lives harder and more unbearable.