12/07/2025
On July 1, changes to the National Disability Insurance Scheme came into effect. According to the National Disability Insurance Agency, the NDIS Pricing Arrangements and Price Limits 2025-26 aim to increase “value for money”, fairness and consistency of service for participants. But what does that look like in reality?
Dr Melinda Smith OAM, an artist living with cerebral palsy, has seen decades of changes and reforms in disability services. “I am 63 years young,” she says, “but I am fitter, healthier and more mobile now than I ever was.” That, she says, is largely due to having access to allied health providers as a participant of the NDIS – one of the key areas affected by rate cuts and limits on travel expenses in changes that came into effect on July 1.
“When I was in my 40s,” she says, “my body was crippling up and I could barely move. I had no therapy – no physiotherapy, no occupational therapy. I was slowly declining with so many spasms and pain. It was difficult to sleep and live each day. My life was a mess.”
One of the allied health organisations that Smith has been involved in over the years – both as an employee and a service user – is the Cerebral Palsy Education Centre (CPEC) based in Melbourne’s south-eastern suburbs. Many of the individuals and families who receive support from CPEC, including access to speech pathologists, physiotherapists and occupational therapists, remain engaged with the organisation for years or even decades. The most recent changes to the NDIS, which mean therapists are effectively unable to travel to where their clients live and treat them in their homes, stops organisations such as CPEC providing services that have real potential to build better lives for many people with disability.
“I can’t imagine not having access to a service like CPEC now, even though there was a time where I didn’t,” Smith says. “Some of the young people with disabilities that I have met through CPEC have always had this service, and the things they do are so incredible and much more than what I was able to do at their age. For most of my life I didn’t have speech, I had limited movement, I didn’t have the option of a frame to help me walk. There wasn’t the possibility for so many things that are a reality for me now.”
Smith grew up in a time when disability support was limited to the bare minimum, which in those days mainly consisted of access to specialist schools and day-service programs that often isolated and infantilised attendees. Before the NDIS, her support was limited to funding from the Department of Human Services.
“When I was in my 40s, my body was crippling up and I could barely move. I had no therapy – no physiotherapy, no occupational therapy. I was slowly declining with so many spasms and pain. It was difficult to sleep and live each day. My life was a mess.”
“Originally that was agency-managed only, and the agencies that managed my funding were so awful. There was $30,000 of my funding that was unaccounted for and no one could tell me what happened to it – it was just gone. It was never recovered. In the late ’90s, I only had about 34 hours a week for absolutely everything. It took me two years to get another 20 hours and I had to fight and fight and fight for that. At that stage, that’s when my life was going downhill a bit – my body was struggling and it affected my mental health a lot. There was no funding for equipment or extra assistance with the support that I had at the time – it was just for the basics. It was incredibly limiting – physically, mentally and socially.”
Under the recent reforms, the NDIA has the ability to change funding periods for its participants, who would previously receive funding agreements of 12 months or more, offering stability and security for the support they could receive. One of the core goals of the NDIS, as outlined by the NDIA, is “confidence and sustainability – ensuring that people with disability have trust and confidence they will be able to access the supports and services they need now and into the future”. The new changes will offer some participants “confidence and sustainability” for 12 weeks at one time, after which they must justify their needs repeatedly.
Smith talks of the anxiety preparing for her NDIS assessment: “I was very nervous when I was first told about the NDIS. I didn’t know what to expect. I was concerned about my support being taken away from me, and I remember my first NDIS plan – I was so stressed about it. I had to give absolutely every single little detail about my life – my goals, my health, my needs. I spent hours and hours writing things for this one meeting. Then when I turned up at the meeting, my NDIS local area coordinator was an 18-year-old boy with cerebral palsy. I had to go through all my personal stuff – personal hygiene, how my body works, how I use the toilet – with this 18-year-old boy.”
Smith says access to services after receiving NDIS funding has changed her quality of life immensely. “When I think about my life then compared to now, there is no comparison. I feel like I live in a dream. There is so much the NDIS is doing to fail people with disability, but it’s nothing like it was before. My work life and productivity have more than doubled. I’m much older than I was back then, but the NDIS has given me the opportunity to pick things up and start my life properly when most people are winding down. I’m making up for lost time. I think a lot of my community is really making the most of what we can do now. It feels like a second chance, and I feel valued and valuable.”
The latest changes come after restrictions were made in October last year on what participants could claim through their NDIS funding. Although media coverage seemed to focus on the restrictions around things like s*x workers or s*x therapy, these changes also cut off support for things such as the costs associated with recreational sports and other health and wellbeing activities, both prescription and non-prescription medicines, diagnosis, early intervention and clinical treatment of health and dental health conditions, ambulance and health transport services and aids and equipment for a child’s education, such as modified computer hardware, education software or braille textbooks.
People with disability already experience more social isolation, mental ill health and poverty compared with the general population. These changes to the NDIS threaten the core values of the NDIS and demonstrate that the people at its helm have lost sight of its original purpose and potential impact.
“We have pushed boundaries since the NDIS came in,” Smith says.
“I think there is a better sense of awareness of what inclusion looks like, and a better understanding of the gaps and barriers. I am cognitive and able to speak for myself, but there are many out there who cannot, and they are the ones losing and missing out.”
It is vital that we keep pushing for the social reform the current model can provide. Through the introduction of the NDIS, there was an enormous boost in access for people with disability – to support, to services, to healthcare, to community. To have offered that and now restricted so much seems profoundly cruel. It creates more barriers for people who already experience so many barriers in everyday life.
“I agree that changes to the NDIS make it hard for us participants, but I don’t think that we as a community are going backwards,” Smith says. “I don’t believe we will ever go back to the days when people with disability lived behind closed doors, only protected by their caregivers, or not even protected at all by anyone that may have known them, confined in institutions or state hospitals. We will fight for our needs and support and security so that it doesn’t go backwards, and we can work towards full and equal lives.”
