Hi to the committee,

My name is Sam Clayfield and I’m currently in the process of trying to get onto the NDIS system as the state systems (that I’m currently on) is totally broken and can’t compete for care $/hr compared to the NDIS.

I am very concerned that there are changes in this bill regarding choices, and those choices being taken away from participants with this bill. Especially concerning as I am trying to shift into the NDIS so I can have a choice of carers rather than deal with the only registered organisation in SA that’s registered with WorkSafe Vic. Registered care organisations are problematic as they control the markets in regional areas- especially as they have just sent through a new price list last week. From July 1st 2024 these are the new prices- and I’m considered to be remote.

I have asked my support worker what she is paid per hr for shifts. And for the everyday/dayweekd rates day shift, she gets paid $36.70 an hr and on weekends on both Saturdays and Sundays gets paid $55.10/hr. Please compare this to the price list here; estar~

In-Home and Community Support (Support Worker assistance, including SIL)	Support charged by the Hour	Standard Rate	Remote Rate
Weekdays (6am-8pm)	$ 67.56	$ 94.58
Evenings (Weekdays, shift finishes8pm-12am)	$ 74.44	$ 104.22
Active Overnight Weekdays (shift finishes 12am-6am)	$ 75.82	$ 106.15
Saturday	$ 95.07	$ 133.10
Sunday	$ 122.59	$ 171.63
Public Holidays	$ 150.10	$ 210.14

| Support charged in blocks of 8-hours | Standard Rate | Remote Rate | | Night-time Sleepover | $ 286.56 | $ 401.18 llncludestwollours actM!suppon,additionalactM!supportwillincuradlari1e) | Short-term Accommodation (Respite) 1:1 - weekday | $ 699.60 | $ 979.44 | | Short-term Accommodation (Respite) 1:1- Saturday | $ 894.10 | $ 1,251.75 | | ShorHerm Accommodation (Respite) 1:1 - Sunday | $ 1,132.18 | $ 1,585.06 | | Short-term Accommodation (Respite) 1:1- Public Holiday | $ 1,370.26 | $ 1,918.36 |

| Specialised Disability Support | Services charged by the Hour | Standard Rate | Remote Rate | | Physiotherapy | $ 224.62 | $ 314.47 | | Occupational Therapy | $ 193.99 | $ 271.59 | | Support Coordination | $ 100.14 | $ 106.15 | | Specialised Support Coordination | $ 190.54 | $ 266.75 | | Social Work | $ 193.99 | $ 271.59 | | Counselling | $ 156.16 | $ 218.62 | | Spinal Nurse - Registered Nurse | $ 138.60 | $ 194.04 | | Spinal Nurse- Enrolled Nurse | $ 96.78 | $ 135.49

’ https://www.ndis.gov.au/providers/pricing-arrangements

Adelaide • Berri • Kad,na • Mount Gambier • Port Lmccin • Port Pme

1800 378 272 • H tara.com.au • 225 Greenhill Road. Dulwich SA 5065 The Paraplegic & Quadriplegic Association of South Australia Ltd , ABN 92 713 327 348 , ACN 644 670 gn see the letter re the rates that they are charging as of July 1st,

and they are now going to also charge extra for country areas. As a constituent in Barker who is reliant on care organisations- I find this greatly concerning. Is all the more reason that NDIS should have sole providers as an option too so that participants in NDIS can negotiate rates with the people that actually do the caring- not big registered organisations aking in the $ out of both carers and clients. I want to be able to have sole providers that I rust, and to know the money is going to them, and that I can make sure the $ is only being spent on my care- not helping an organisation that’s making millions off NDIS recipients and their carers that are really paid a pittance. I want to be able to have people I trust inside my home and have local people to me as my carers. Currently my 1 carer is doing 140km round trip for each shift and has to cut down the shifts she was doing here as using her own car on so many rural rds has damaged her car. Plus there are kangaroos etc- but the reality is that iI need to be able to access carers close to me. There is no registered care organisation based in Coonawarra SA. But there are plenty of people that would be happy to do part time work here that live close by and work on farms close by-it makes it safer for me too and will help me engage with my own community. Apart from visiting the Drs, I haven’t left the house since April 2021. Can’t without care. And the state systems can’t compete with the federal system.

Also of note is Victorian WorkSafe which currently is paying $64/hr to the provider Estara in comparison to what they say on their website is allowed under Vic law (SA has a similar amount per hr) has over the last few yrs has been $42/hr and $46/hr respectively … so how are people on state based care systems meant to compete with NDIS participants for care when they can only use registered providers? It is the reason I’ve applied to the NDIS, solely because I’m priced out of the care market by the NDIS- because of how I became permanently injured, and where it happened. Keeping sole providers in country areas IS ESSENTIAL as it gives choice to participants. Otherwise I will be shifting from one state system that has so little choice that I’ve been waiting since 2018 and still can’t get care 7 days a week since my Dad died in 2018.. to another system that will treat me like dirt and give me no choices. I’ve been stuck on Vic Workcover since 2009 when I catched Q fever- I now have Post Q fever Syndrome (apart from fatigue and the randomness of my symptoms, I may in the future have heart issues or lymphomas to look forward to). But the randomness of day to day life of my disease means some days I need help down to brushing my teeth- other days I need help to make sure if I try and get out of bed that I don’t fall over but iI can do some things for a short time- but there is no flexibility with the registered care organisations to match my illness. Whereas being able to organise sole providers that live close by on other farms, that would give me the flexibility and the carer flexibility to have choice what to do during the week. Some days I need more hrs than others. Registered organisations take away choice from clients just by how rigid they are. And in a country area if I was to have a Drs appointment by the time I would get to the Drs, possibly an hr or 2 wait in a country area- plus 40 minutes back to the house…I’d be lucky to be able to have a Drs appointment! And because the registered organisations are so rigid they don’t allow for choice for even medical appointments times etc. I don’t want to be stuck on another system where no choice means no help. Where I have to rely on family and neighbours (whom have health issues of their own currently).

For country people we get charged more and we get less choice. Please don’t take away options for unregistered providers- that will take away choice for country people.

Also not in your bill is any help for GPs. These Drs underpin the entirety of the NDIS system and the paperwork component they do not get properly paid for comolex cases- and also for Drs trying to help patients get onto the NDIS there seems to be a huge lack of resources for them to help patients. My medical team have really struggled to deal with this system. And the lack of advocate funding is also an issue as whilst I

• found one for help this week, I am then on a 6 week wait list. Most advocates I’ve spoken to are underresourced and underfunded to deal with the sheer quantity of applications to the NDIS and issues with the systems. Please consider the effects on those that help others too for your bill.

Please reconsider this bill and passing it through as it currently stands. I’m already disappointed with even the application process of NDIS- one of the reviewers issue being that I didn’t try an experimental therapy in a country area after we found out my main carer (my dear Dad) for 10 yrs was dying… that was brutal- they took issue with me making a choice about my own health care and medications that will not cure me and me choosing not to take don’t things. NDIS should not make it compulsory to trial unproven treatment in order to get onto the NDIS…especially when with my illness trialling medications in the past has been harmful to my long term health outcomes.And I’ve been part of WorkSafe/ Workcover in Vic and independent assessments are stressful, they don’t know all your medical history, reports even though written in my favour.. they are so exhausting and for people in country areas we are at the point where it is impossible for me to attend as I don’t have full time care! So if you put those types of assessments in place it will put barriers to those in regional areas who need help getting into the NDIS , and it will also cause even more issues with trying to get medical appointments in regional areas! For example my local state MP that has been wonderful trying to help me, found out that even though the NDIS would like for me to attend a pain management clinic in their rejection letter, inSA there is a 4 and a half yr wait to get into Flinders clinic. Over 4 hrs away. My Dr had already said this reallywas not an option to the NDIS for me but it seems to have been an issue for the NDIS- but has taken a state MP to check this stuff out to help with my application and to help the NDIS understandthat my Dr has done everything humanly possible to help me given the resources that exist in a regional area. And also..over a 4 hr drive for me in a state with no public transport options in Coonawarra where I’m based is already difficult for country people to get onto the NDIS! Already the NDIS seems like it is turning into a system like worksafe where getting approvals for things is incredibly difficult and local GPs are not listened to at all- and in regional areas GPs ARE the backbone of the health system and are not rightfully respected it seems for their breadth of experience and expertise. For example you are more likely to find a ural GP that knows what Q fever is compared to a city one-because is a rural occupational disease! External assessments , as someone who has been through many, it feels like you are being violated every time- Drs telling you they have to examine your body and touch you and you have no choice because if you say no they take your care away… it is so damaging I don’t even have words. Apart from local medical team, in general I’m terrified of Drs. Putting this new assessment stuff in place is taking away choice from people to see their own Drs whom they trust. If this happens in the NDIS it is breaching the rights to our own bodies and the right to see a Dr we trust.

I am dealing with the AAT now- but I’ve had an NDIA compliance officer that deals with cases that politicians have raised, Steve from the NDIA spent a week going through my file and said to me he believed I should be on the system and that it was a shame my disease wasn’t on the NDIS list as I would have already been on it- and told me to not take no for an answer and if get told no by AAT to go back to the start and apply again straight away by contacting my local federal member. I’ve also had both advice from Vic and SA governments to apply for NDIS as options for care and resolutions of health care in cross border communities is not going to charge any time soon- no one knows how to fix it, so no one seems willing to touch my case from the current state governments- they all believe that the NDIS is my only option. An unintended consequence of NDIS registered providers has been that they have jacked up the price of carers- who would take some one on for under $60/hr when on weekends Saturday is over $130/hr and Sunday over $170/hr.. yet the carer is lucky to get around $55/hr. Carers for big registered carers, and

• participants in this current new bill will continue to suffer‐ the NDIS cost issue could be sorted much more easily by allowing more sole providers and allow competition to take care of the pricing so that it goes to the actual carers and participants in NDIS can access care and carers and have choice. In the country this is already difficult- this bill will make it impossible in my view and from my dealings with just one provider. Please don’t pass this bill as it is.

Thank you for your time to read my letter. I hope the information is helpful to the committee, from the point of view of someone who has been in a state system and my experience/views/ feelings so far with the NDIS system as it is now. Also please don’t pass this bill as it is- there is so much that needs looking at in the Disability sector and registered providers aren’t the people you need to talk to… the actual carers, local Drs, avocates and participants and their families… talking to them are the only way to pass a new bill and make sure that any harm from a new bill is kept to a minimum .

Thank you for your time.

Kind regards, Sam Clayfield