Yesterday the disability and special needs community of Australia had a small win. We were able to gain enough opposition so as to cancel the introduction of independent assessment which was to be implemented though out Australia by the Federal Government in an effort to cut cost in the NDIS.
The National Disability Insurance Schem was set up over a decade ago by the then Labor government to give people with disability the ability to live a life with dignity. Cost of living is on the rise in every community. For a family with normal healthy individuals ensuring financial security is becoming harder. What people fail to realise is that when you have a disability or a have a depended with disability the financial stress it brings is enormous. This gap in financial assistance to the community ensured that they became second class citizens.
Up until the roll out of the NDIS people with disability had limited ways of gain the support that they needed. The support given to the disability community from the state governments was minimal. Financial help was depended on being born to a family that had enough funds or if they were able to fundraise or they were able to tap into various charity organisations. The NDIS was designed to give equal footing to a community that had been neglected for decades. It was to provide tailored support based on individual needs of the person with the disability and their support system.
According to the data given by the current government the NDIS scheme costs 21.5 billion in 2019–20 and supports over 433,000 Australians with disabilities. The current government which has been in office for just under a decade has been chipping away at the heart of the NDIS program. They say that the number of people in the scheme is beyond what it was designed for and in order to sustain the program new legislation to tighten the eligibility must be introduced.
But if you speak to the majority of people who are participants of the scheme, they will tell you that the scheme does not deliver what has been promised. The red tape and bureaucracy that has been introduced makes it hard for people to navigate the system and is designed to make them give up from trying. While the NDIS cannot sustain the people who have disability it however does have enough money to spend on luxurious office spaces and to hire expensive organisations as external assessors, lawers or partners. As reported, these cost the NDIS billions compared to the money spent on the individuals who are participants in the program.
The proposed changes were to involve independent assessors to assess all participants in the NIDS program and to evaluate if they were getting the funding according to their disability. They would base their assessment after spending 3 hours with the participant and their family. This was supposed to deliver a fairer and a more consistent outcome.
The geniuses of this proposal are questionable given the current practices followed by the NDIS blatantly tries to neglect the needs of participants. Currently the packages given to participants are based on reports, letters and tests provided to the NDIS by doctors and allied health professionals. They set out the type of equipment, vehicle modification, home modification, therapies and one on one support needed for the participant to have a successful life in the community. The NIDS assessors will then take up these recommendations and then decide if they are “reasonable, necessary and value for money” ensuring that the participants health, safety and wellbeing remain the focus of the package.
What is considered “reasonable, necessary and value for money” is depended on who assesses the requested supports. If a participant is lucky the person who is assessing will have some knowledge of disability and allocated the appropriate structure. Sadly, this is not the case for most participants. The current line of the NDIS is that “not enough information/evidence has been submitted showing the needed for such support”. Questions such as “when will she get better?” or “why does she need 5 dippers a day?” or “What will she be able to do with these supports?” are constantly asked from the participants.
The letters, reports and examinations given as evidence to support the request for funding needed for children like Diyanna are compiled by doctors and allied health professionals’ over multiple consultations which take months to a year. How can a 3-hour visit come to the same conclusions? When the NDIS continues to dismiss recommendations set by the medical and allied health specialists how could the recommendations from a 3-hour visit achieve the support needed?
Instead of supporting the most vulnerable of our society the NDIS to a majority of the disability community has become a nightmare.
So how does this work for Diyanna?
Diyanna was accepted into the program mid 2018. This was because she was enrolled in Disability Queensland program by the children’s hospital in 2016. But we had to provide letters and reports from Diyanna’s medical team as well as her allied health team. We were supposed to be contacted by the NDIS in July 2018 to discuss what Diyanna needs. Months went without a response during which time Diyanna had no support. Finally, I contacted them in November and managed to hassle them into setting a date for the initial face to face assessment.
We finally had this meeting in December 2018. All though Diyanna’s team had stated she needs 24 hours support the NDIS representative told us that they the NDIS would never provide such care especially because she is a child. And that it is expected that the parents and extended family give the support needed. To give 24 hours to Diyanna meant that Dinesh and I won’t be able to work. If we didn’t work, we wouldn’t have money. So clearly this was not an option. Our extended families have jobs and children of their own. Our parents are getting old but they tried to help in whatever way they could.
Out of the 168 hours of care needed a week the NDIS agreed to support 30 hours. I was already teaching part time. But this meant I had to change my work hours more. The home modification reports that were presented were not enough. We needed to get new ones. Diyanna would receive funding to see a physio, OT and a speechy to ensure that she can get the reports for her equipment. This was a once-a-month visit. The car modification would need to be pushed back for a year as they felt that Diyanna already had a big package. Even though we had given enough evidence to show that Diyanna needed significant support we were told it still wasn’t enough. It was at this meeting that the sentence that defines the our NDIS experience was told “The NDIS is an insurance scheme and there has to be a return on investment to the money allocated”. Indirectly I was told that funding is given if there was a return to be gained. Children like Diyanna do not fall into that category. Speaking to friends and family about this interaction caused mixed reactions. They were surprised and shocked but felt that it would not be the case simply because Diyanna was a black and white situation.
Finally in February 2019 we were given a package of funding for 8 months. During this time, we redid the home modification assessments which came with the same results as the old one. As I have written in my previous post the cost of modifying our home became a contentious topic with the NDIS representative. In July 2019 applied for a wheelchair and a special car seat (we would not get these till March 2020). We also looked at vehicles that can accommodate wheelchairs.
At the Disability Expo of 2019 we spoke with companies that do home modifications and car modifications. I was at the early stages of my pregnancy with Gabby and we were keen to try and get the home and the car modifications done as soon as we could as it was becoming harder for us to care for Diyanna. The modified vehicles were to cost $80,000-$100,000. Being on one solid income and a supplementary income meant such an expense was not possible. When asked if we can purchase a second-hand wheelchair vehicle, we were told that the NDIS would not help with the funding nor would the fund repairs and/or replacements the equipment of such a vehicle. The NDIS would only be responsible for funding if the vehicle was new or near new (with in 3 years old).
In other words, to be eligible for a vehicle modification the family would need to spend close to $50,000-$80,000 (depending on the type of vehicle needed) and purchase a vehicle. Once that is bought it would take at least a year to get the vehicle modified. There is also no grantee that the NDIS will fund everything that would be needed in the modification and might ask the family to contribute to the modification. Once the car is bought the cost of the modification itself comes to $40,000. And we are still waiting for the car modification approval. This is just one of the many things’ families have to put in finically to get help from the NDIS.
The NDIS also sets a price guide as to how much provides can charge participants for services. The providers ensure that they charge families for the maximum amount possible. Cancelation policies at times do not work and sometimes costs associated for travel is unreasonable. For example, the provide that gives Diyanna the allied health support charges $193.33 an hour with an additional $193.33 for travel. Each therapy session costs almost 400$. Based on her reports and recommendations from her team Diyanna needs weekly physiotherapy and speech therapy. Which would equate too $800 a week or $32,000 a year. This does not include the charges for replying to emails, answering calls, writing reports or preparing supporting documents. Much of Diyanna’s allied health budget has been consumed by the constant request by the NDIS for evidence there by denying Diyanna the therapy she needs.
If the NDIS was to provide 24-hour support for Diyanna the minimum rate according the NDIS is $51.09. This would be a yearly cost of $447,549. The current funding doesn’t even cover a third the cost.
Diyanna also needs equipment such as wheelchair ($15,000), shower bed ($4,000) car seat ($9,000), AFOs and body splints ($6,000) etc..
Then there are the medical expences which are not convered or supported by the NDIS.
Looking at the numbers set out by the NDIS at a minimum Diyanna would need $4480,000. Yes, it is a large amount but that is what it takes to give her a quality of life just like all other children. If she was taken from us as a ward of the state, she would cost the government over a million a year.
Children and adults like Diyanna do not have a choice when it comes to their disabilities and complications. These costs are beyond the abilities of what anormal hard working family can provide. Unless you are a millionaire you cannot afford to be disabled. How are families expected to cope? The NDIS has become a scheme support is given to those who can afforded to spend.
The majority of families do not have huge amounts money saved up to spend on new vehicles, to supplement the extra support needed, to get additional therapies or to buy homes that are near special needs schools that needed minimum modification for their loved ones. The hoops NDIS has set out for families to jump over so that they can have access to funding is unreasonable, ridicules and inhumane. This put families like ours not only in financial stress but also emotional, mental and physical stress. Families like ours are also unable to get support from other charity organisations because we are in the NDIS program. This forces more and more families to turn to fundraising so that they can purchase a care or do home modifications that the NDIS deems “not reasonable, necessary or value for money”.
The NDIS I was created to help families with such costs. And to provide adequate support so that the families can function. Yes 24-hour support may not financially viable but expecting parents to provide care for 20 hours a day and to do a job and to run a home and to take care of the other children is not viable either. All we want as parents is to ensure that Diyanna’s health, safety and wellbeing to be the main focus. What families need is to be supported so that they the family can care for the person of disability. It’s about sustainability. It doesn’t have to be 24-hour care even 12 hours would work. Instead of forcing families to spending $100,000 on a new disability vehicle allow and support families to by second hand vehicle. The NDIS needs to regulate providers and set out more reasonable price guide to bring down the cost of supports and instead of paying lawyers to defend the NDIS in courts they need to listen to the experts and come to a sustainable middle ground with families. That is the only way genuine change and sustainability can be brought into a program that has change the lives of so many people.
Unfortunately, I do not believe this government really cares about people like Diyanna. Even though they have admitted those mistakes were made, incorrect information was given and that they have moved the goal posts multiple times there is still no accountability or responsibility taken. And we are still a long way from a resolution.
We will keep fighting to get Diyanna what she needs. It’s hard, it’s frustrating and disappointing but we will keep pushing but Diyanna’s needs won’t wait till NDIS comes to the table. There is something that need to be done now. So please if you can donate to the fundraiser set for Diyanna and share our story.
Diyanna's Gene 
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