The NDIS has opened pathways for help for Disabled people where there were none before, especially for adults with permanent disabilities.
The changes to the NDIS Act completely upend its meaning, especially choice and control. It takes away almost all the choice and gives no control to the participant in any way at all.
As a parent of an adult who lives independently with a diagnosed (including genetic test) physical disability which will never improve, but more likely will worsen over years, these changes will be detrimental to my son. In fact his plan has been reviewed without notification beforehand, simply a phone call that changed everything in his plan. When he received it, it was poorly written with massive spelling and grammar mistakes and it was clear it had been written in a hurry and going by his experience, it was pre-written and the phone call was merely to tell him what he could get rather than reviewing what he needed.
If my son’s social and community supports were removed, he would only get a support worker once a week, in contradiction of the reduced funding plan he was given which would increase support worker hours not to give him social and community access but to provide clinical therapy they are not qualified to provide.
His capacity building supports have been removed. The therapy he was receiving, as a person with FacioScapulaHumeral Muscular Dystrophy, requires clinical knowledge of his condition. This has been reduced to having an Exercise Physiologist write a plan for a Personal Trainer to do the therapy, alongside Support Workers.
It should be noted a Personal Trainer is someone who works with generally HEALTHY people. A Personal Trainer will not have the clinical knowledge of a condition like Muscular Dystrophy, nor will support workers and that increases the chance of my son suffering an injury at the hands of people following a plan that is not dynamic and adjusted on a week to week, or even session to session basis. Nor is it likely that a Personal Trainer or Support Workers will have the clinical insurance. Personal Trainers and Support Workers are not members of AHPRA. Personal Trainers are considered part of the sport and recreation industry. My son does not do therapy for sport and recreation.
Reviews, when requested and lengthy functional capacity test reports are provided, are being outright rejected and participants, like my son, are being forced to pay for their therapy out of their Disability Support Pension, something the NDIS was meant to alleviate. This is unsustainable. Therapies such as Exercise Physiology are provided to help maintain current functionality for as long as possible. Without such therapies, Participants like my son will deteriorate, as he’s already had a great deal of deterioration in the past twelve months, yet the one therapy he needs and consistently uses has been taken from him.
My son lives in a private rental flat. It takes half his DSP a fortnight in rent. He gets full rental assistance which covers ⅙ of the fortnightly rent. His rental has grab rails in the bathroom plus garage and at the front door. However it also has a single step at the front door and two steps in
the garage, both reasons why he needs a grab rail at those spots. His landlord does not want ramps installed.
Where does he go if he deteriorates to a point that he requires a wheelchair? Our home isn’t suitable. The bathroom isn’t suitable. Will NDIS even cover the cost of a wheelchair in the future? These are uncertainties both he and my husband and I, as parents, can’t continue to live with.
When his plan was cut so dramatically, it was so devastating that I had seriously considered suicide so my husband would get my superannuation to help pay for our son’s therapy. I still struggle with how best to help our son. My husband, already 65yo and with health issues, has returned to full time work as we were assisting our son with expenses when he was paying for his therapies.
After his plan review, his funding was cut again! It felt like punishment for requesting the Review. When I mentioned he was paying for his therapy out of his Disability Support Pension, the person on the phone call said, and I quote: “That is his choice.” Disability is not a choice. His choice and control were removed when they cut his funding and replaced it with inadequate and potentially dangerous supports. We were constantly told he won’t get three hours a week, that he was never funded for three hours a week with an Exercise Physiologist. He never got three hours a week because he wasn’t capable of three hours a week. His FSH Muscular Dystrophy causes fatigue. He has always had 1½ hours per week and never succeeds in getting all his therapy done in those half hour sessions because he needs time for rest breaks. So the funding is already inadequate for what he needs and will increasingly be inadequate as he deteriorates.
They also added funding for a podiatrist. He seems to always be given funding for a podiatrist that he has never, ever used. He has also received funding to see an Orthotist for two hours per month. In the 8 or so years he has been a participant in the NDIS, he has used an Orthotist 4 times. Twice in the early part of his participation and twice in 2025. They kept suggesting pool therapies, which aren’t available in the local town where we live but available in the next town, 45 minutes away, which would require MORE Support Worker hours PLUS transport to get him there for a HALF HOUR session because his condition does not allow him to do a full 1 hour due to fatigue. But while suggesting it, no funding was forthcoming towards it. Why are plans being given funding for supports that go unused, while much needed therapies and supports are completely removed?
By cutting out the Exercise Physiologist, the NDIS has effectively failed my son. He gets a few hours for a Support Coordinator. Some funding for an Occupational Therapist to do functional capacity reports perhaps once or twice a year. Funding for the Plan Manager. A cleaner for one hour a week and a support worker for two hours a week (which will likely be cut) and a few other basics like equipment. The one therapy he needs is the one they now, after 7 or 8 years, refuse to fund. This therapy started after he was referred by a Physiotherapist to the Exercise Physiologist! His current plan, which we plan to have REVIEWED AGAIN, and will take to the Tribunal if it is unsuccessful, is approximately $80 000 for one year. He could manage with that
funding BUT ONLY IF he had true CHOICE AND CONTROL and it wasn’t boxed into compartments of supports he doesn’t and can’t use.
The LAC (Carers Queensland) is seen as working for the NDIA and not for the participant. Both organisations have lost all our trust and all we expect is pre-written, pre-ordained supports without any say by the Participant in any way and without any reports actually being read and understood. If this Bill is passed, people with disabilities will be pushed back into the four walls of their home, expected to be content with living in poverty and staying invisible to the wider public. Unless they are capable of bringing glory to the country as paralympians. That’s how it feels to many people with disabilities, to many of their families and supporters.
I am angry, stressed, distressed and struggling with how my son has been treated with him and how he will be treated and survive when I and my husband are no longer around to support him.