The National Disability Insurance Scheme (NDIS)provides supports for those who live with permanent disability to enable their economic social participation, as well as to close the gap between those with a disability and those typically developing. The demand for this life changing support through the NDIS has been unprecedented, and happened far more quickly than expected.
The NDIS has close to 530,000 active participants with around 180,000 or about one third having a diagnosis of Autism. The average first support plan for those living with Autism is around $15,000 for 'low need’, $35,000 for ‘moderate need’ and $60,000 for ‘high need’. Some supports approach$100,000. Government estimates the NDIS budget is approaching $40 Billion, which passes funds allocated to Medicare and aged care.
The NDIS scheme continues to face the problem of how it will pay for these essential supports, whilst adequately and appropriately meeting the needs of people with disability. Research suggests that Australian’s are proud of their efforts in supporting the scheme and that cost of the scheme is fair. The need for disability support is consistently identified as highthis is an investment into the lives of Australian’s who deserve a fair go. For this reason, amongst others, the NDIS needs to be high quality and effective. The government had an idea that independent assessments would help this process, yet this was rejected by Australian’s in 2021.
The rejection of independent assessments taught the government a lesson. It needs to listen to those people who are living with disability and theyknow the best ways support their disability. This new way of listening to the people is called ‘codesign ’ and was made law with regard toNDIS processes in 2022. In March 2022, the NDIS ‘Information Gathering for Access and Planning Committee ’ (IGAP) began work making the NDIS better. The IGAP was the start of this new way of doing business by including the voice of disability in the NDIS. Aspergers Victoria (AV) has a voice through this committee and speaks about Autistic needs.
The IGAP committee began listening to everyone involved in the NDIS, especially those living with disability. The IGAP requested AV to be involved. AV had their own focus group called a listening session. AV members were asked about how they tried to access NDIS supports. AV members also spoke about how good (helpful, effective, affirming, useful?) it was when they received help from the NDIS.
The IGAP heard the voices of AV members and also the voices of many others living with a disability around Australia. Most of those voices said the same thing. They found the NDIS was important to them and can change their lives for the better. They said it was very hard to talk to the NDIS. They found it hard to tell their story about how disability makes their life difficult. This strongly suggests that the current structure of the NDIS is not effective in seeing them and their life clearly and can make mistakes when seeking to help them with supports. It has been reported that many people living with Autism havefound the way they must talk to government traumatic and caused significant distress. This is a common occurrence for those living with Autism, navigating a neurotypical society with neurodivergence can cause a lot of difficulties, which typically developing individuals never have to experience.
The IGAP also heard the voices of the NDIS workers, including those whocare for and support people with disability. Some became troubled that they cannot help as much as they would like. These workers found they had problems really understanding the stories of how disability affects people ’s life. Many of the forms and tools used to learn these the stories and gain understanding need to be improved and slow everything down. Likewise, workers must follow the rules about how the NDIS can help, yet some of those rules could be more helpful. If the workers don ’t understand how disability affects the person ’s life, and have trouble using the rules, then the help they offer may be misguided and unhelpful. They stated that they know that much the work they do has complaints about……??… They reported that it is often very difficult to get the job done in under the four hours available for them to complete a NDIS plan. There is a huge amount of pressure as that plan needs to support a persons living with a disability for at minimum a whole year.
The IGAP is now hearing the voices of doctors. The doctor ’s say they would like to tell the story of how disability affects their patient ’s life. They find the way they must talk to the NDIS hard, just like people living with disability find it hard. They have a difficult task because the NDIS needs them to tell their story t using their medical skills. This means they need better access to tools and methods to give the NDIS what they need from them, the first time they provide information. There are ideas how to make the medical information needed simpler, to the point, more affordable and trusted by the NDIS planners. One of the biggest challenge for Autism diagnoses is that the information to tell this story needs to come from many professionals.
The IGAP is now hearing the voices of Allied Health professionals like Occupational Therapists, who the Autistic community know so well. They would also like to tell the story of how disability affects their patient ’s life. They are actually very good at understanding how a person with disability functions with and without support. Doctors tell a medical story and Allied Health show how that medical story affects a person ’s life. They say it is hard to tell that story to the NDIS and have similar problems like the Doctors. Some think that the story would be better told if they could tell it together with everyone. These allied health also commented that they feel frustrated when NDIS supports, which are needed and have been discovered through lengthy assessment processes, are rejected by the NDIS. This often means more work for the people working with the Autistic community as they need to continue communicating with the NDIS until patient's get what they need. The cost of this process is mostly seen in patient’s showing worse symptoms then leading to poor outcomes, in the money the NDIS needs to provide to pay for the time of the allied health workforce, and overloading a workforce that is already past capacity. All of these issues contribute to poor outcomes for people living with disability.
The NDIS needs to keep up with the needs of people with disability in a modern and developing society.
Mostly, the news about the NDIS is good andthe government is listening to people living with life long disabilies like Autism. In October 2022, the NDIS review started and will go for a year, ending in ????. Change is needed and just like in our personal lives, we must face change and build resilie.ce The NDIS is evolving into a stronger and more understanding organisation.
The NDIS is a social scheme that needs to hear each person ’s story and support them. It is not about a client number and what can be given. Such a complicated scheme will take time to review. It requires the efforts of many people, including organisations like AV, who believe in people with disability. They want people with disability to have a fair go and a good life. This story about the IGAP continues because it includes AV ’s members stories and their relationship with the people of Australia through supports from the NDIS.
By Denton as an opinion piece for AV Members