National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 [Provisions]
Submission 118
The proposed Amendment Getting the NDIS back on track No 1 bill which includes provisions that participants will only be able to enlist the services of people who are registered providers with the NDIS will affect me very egregiously if it goes through.
The NDIS has made a huge positive difference to my life but this change will drastically worsen my current circumstances and is poor policy in terms of the whole of society and disability rights.
I am self managed. It has been working very well for me to be able to engage whomever I please as long as they have an ABN. One of my disabilities is managed primarily through diet - I suffer severe symptoms if I don’t eat the right, highly specific, diet. The meals that I need cannot be bought ready made. My other disability means that I don’t have the capacity to cook these meals that I need for myself, that help me not to have severe symptoms and that mean that I can function a whole lot better and do things that I like to do in the community, work towards my goals and not spend all my time being sick.
My meal preparation takes a long time. I receive services from an agency that was providing me with services since 1999 before the NDIS. I now get the same service from them, but it was never long enough before and cooking days would leave me totally exhausted completing the things that needed to be done. Since being on the NDIS I’m in a position to have a second person, who I found privately, to come in the finish the cooking, portioning, dishes etc - that used to take me up to midnight or later every week. If I just had longer hours from the agency person, I would go over my budget. Plus, over the decades I’ve found that many people through the agency can’t cook, so take a long time to make the food I need, and I have to explain everything which is exhausting (I have chronic fatigue). I’ve been very lucky to find an excellent home cook, privately. I’m comfortable with her in my home and working for me is a bit of extra money for her, the only paid work she does or wants to do. She is not replaceable by someone else at the agency - I know from when she’s on holidays and the many times I’ve had to have a person other than my regular from the agency - a big agency: Mercy. It’s very stressful when she’s away having people who take a very long time and can’t really cook. Plus the agency cost is more than double than me getting someone privately. This private person is not interested in becoming a registered provider, nor are my other privately engaged helpers.
The same situation applies to my gardener and cleaner. I don’t want to have to train up new people. I bet agency gardeners wouldn’t do hand weeding. I don’t want yet another stranger in my house. Also when I engage someone privately I can choose whether I’m home or not when they’re here - meaning I can keep emergency appts for physio, which happens quite a bit, when I need it.
The proposed changes will mean recipients receive at least half the amount of service - due to the high overheads etc of agencies. Or if you make all our budgets bigger it’s going to cost the budget a lot more and I know that’s a big issue. And totally unnecessary.
Not only unnecessary, but it’s very rude, arrogant and patronising for the government to think that it knows best what people with disabilities want and what is in our best interests - clearly that is not the case. These changes may safeguard a few very vulnerable people (I don’t think they will, I think
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 [Provisions]
Submission 118
it’s just trying to cover yourselves in case something goes wrong) but will make things much worse for those of us who self manage and are very capable of making the right decisions for our lives. I thought that was the idea behind NDIS? There are far better ways to safeguard particularly vulnerable people, or you could reserve these changes to apply to particularly vulnerable people (cognitively impaired without active family involvement?).
I urge you to reconsider and remove this ill conceived, limiting and damaging aspect of proposed changes to the NDIS. Please leave things as they are, these changes make me very scared, worried, sad, stressed and angry.
PS – since writing the above my regular from the agency has ceased to be my regular as she is working less. Her replacement, even though she has been here several times now takes about double the time so I need to get my private person in for longer to get the job done (as my budget won’t extend to always having the other person for double the time, and my meals are much better if the private person does more). I’ve asked the agency but they don’t have anyone else that would be able to do it better/quicker. I know from being with the agency for 25 years that people who can prepare my meals well and within the allocated time a few and far between.
This is disruption enough, please don’t mess with my life by passing these amendments.