Submission to the NDIS Provider and worker registration Taskforce

Dear NDIS Provider and Worker Registration Taskforce,

My name is Jarrod, and I am an NDIS participant. I have been self-managing my plan since I entered the NDIS roughly five years ago. I will be speaking in participant first language. Many of my statements about participants can also apply to plan nominees..

I believe any restrictions on the current self-management arrangements are unacceptable. Choice and control is a principle that has worked well for many disabled people long before the NDIS was created and continues to produce unimaginable benefits for disabled people, taxpayers and society.

Large registered providers have sexually and financially abused me. For example, my wife and I invited some of our support team as guests to our wedding. We clarified that this wasn’t a need for paid support but as guests at a wedding. Every support worker, apart from the registered provider, understood. Devastatingly, a week later, we received an invoice for 8 hours from that registered provider. He called and spoke abusively to my wife. Demanding we “approve the F$%king shift,” That support worker sent us a threatening letter with the registered provider's letterhead. My wife and I reported it and were told by the provider that it wasn’t right that we spoke to him directly, even though he came to us first. We had sought legal advice, which left us out of pocket. As newlyweds, it wasn’t something we wanted to spoil our high from our wedding, not to mention the financial abuse of disabled people.

An experience of sexual abuse was on my first ever day of work. I was getting out of the shower, and the registered support worker sexually assaulted me while I was hanging in my hoist. This assault left me feeling hurt, confused and disempowered as I didn’t have a say in the training, hiring or firing of the support worker.

A good news story about my current support system is that late last year, the batteries in my electric wheelchair died. Any wheelchair user will tell you that you don’t get much warning, maybe a day or two before they won't charge or stay charged. I contacted a registered repair company I knew would know the batteries I needed, but they had no stock, so I had to order them. They cost me close to $1100, that was before installation. A few hours passed, and I was worried. My support worker came that night to give me a hand into bed. I told her my issue. She is a bit of a tradie and knows her way around the basics of my chair. Together, we looked online at what local battery companies had and found a place that had THE LAST TWO BATTERIES! Being local, my support worker knows everyone and naturally had the shop owner's number. It was after hours, but she linked me up with him since she knew him, and he could hold the batteries for me. They cost $400, a big difference from $1100! I asked my tradie support worker and another very handy support worker to put me and my hoist in the car and come down with me to the local battery shop.

In the back of the shop, my all-female pit crew got to work, and I sat on the floor with my sling around me. They saved the day. I was back on my wheels for the cost and time of 2 hours and roughly $600.

Without access to my bespoke, non-NDIS registered providers, this wouldn’t be the case, as red tape, costs, and time would all blowout. I could not think what my life would have been if I had to spend three months in bed with the limited support hours I had. How would we pay rent? How would I be the husband my wife and I expect me to be?

If participants are agency-managed, a registered provider can access a participant's portal to claim whatever amount without the participant's approval, let alone see what has been claimed. Suppose you are on the new PACE system. In that case, payments get approved if the participant doesn’t reject it in 7 days, and this happens regularly, with participants or nominees only given a receipt..sometimes.

The participants have complete control when plan-managed, which won’t exist if the recommendations are adopted or self-managed. They are invoiced directly, and they decide if that invoice is correct or not. Participants can see patterns of invoices, support budgets in real time, and make fiscal assumptions for the plan's duration. It’s also a hell of a lot cheaper for the NDIS!

Regarding safety, plan-managed and self-managed participants are very good at having systems in place. Why would they pay for these “Shonks” the minister keeps talking about? Disabled people can spot dodgy a mile away; we’ve had a lifetime of it!

Suppose these safeguards are no longer available and the only real option is agency-managed, in an ecosystem where every provider knows you are an NDIS cash cow. In that case, the only people overseeing it are the understaffed, time-poor NDIA, or worse, a robotic computer system that doesn’t consider participants' lived experience and expertise. There are going to be far more cases of financial and horrific physical and physiological abuse caused by one service type and by the systems built for it.

It is clear from the review that there could be some improvements to the self-management test. The review team and the minister have recommended that a risk assessment be applied to the support types. Assessing risk based on support type is a fundamentally flawed concept.

For example, a 21-year-old participant has moved out of home and is looking for someone to assist with mowing. Knowing the 21-year-old is on the NDIS, the provider can charge an enormous rate. The 21-year-old is likely to pay this as he is a new single bachelor trying to prove to his parents that he’s “got this”.

On the other hand, a young professional human rights lawyer could need high care for short periods during the day. Because she is stuck using a “standard” registered provider, the worker

she will have is someone she doesn’t know, doesn’t have the same values as the participant and looks like a deer in the headlights when the young lawyer asks them if they have any opinions on the social model of disability.

My recommendations for safeguards of all participants:

Currently, NDIS providers are subjected to 24 acts nationwide, including the Quality and Safeguards Commission, regardless of registration status. What is missing is an investment in upskilling the justice system that would support the safeguarding of people with disabilities in and outside the NDIS.

A $5b a year for ten years investment in the following

• $3b per year for emergency services to upskill the first responders and the courts to undertake training and policy development that assists disabled people in equitably accessing the justice and emergency system.
• This investment should not only be co-designed by NDIS participants but also include any training that can be developed, facilitated, and overseen by disabled consults and facilitators.
• $2b per year for investment to ensure that service providers have a paid steering committee overseeing practice standards with an award-waged FTE Disability liaison officer who consults consumers and their families.
• Service Providers and the government would share the cost. The DLO must not be a client of the service provider and must not be subjected to NDAs (gag orders)
• A separate investment of $1b a year for ten years to advocacy organisations to deliver rights-based awareness campaigns, advocacy and leadership initiatives for people with disabilities, and is to be designed, run and evaluated by people with disabilities.

My Recommendations for fraud mitigation while ensuring the rights of NDIS participants are: Document OG Creating your plan 20231230, pages 8 states:

“Your plan will include information about: ? you and your living situation ? your goals, or things you want to work towards ? who supports you, for example your family, friends, community, and other government services ? any NDIS supports we fund

? how you can use your NDIS funding

? who will manage your NDIS funding

? when we’ll change your plan.

This guideline is about how we make decisions when we create your plan”

It is clear that these OG are not being followed and are not being used to asses someone's suitability to self-manage correctly. The first four dot points must be considered in deciding whether self-management is appropriate, as this will improve risk mitigation.

*I note the recently proposed law introduced in March will also allow the NDIA to consider if a participant's budget has been overspent in determining if self-management is appropriate. The bill presents a high risk of people being forced off self-management with no recourse.

In addition, I put forward the following recommendations.

• Suppose participants enter the scheme wishing to self-manage but have never self-managed a state or territory health or disability package. The participant is offered a 1 to 2-year plan management plan. At the end of the plan, the NDIA must prove that the participant is not suitable for self-management. The test should cover the participant's financial literacy and the connection to the community and the decision-makers in the participant's life.
• All participant's plans will include a stated support budget for support worker training. The amount is to sit inside the participant's plan budget and be utilised in a bespoke manner that benefits the participant's safeguarding needs. This would be based on a percentage of the support budget for daily activities.
• Participants' plans and budgets will be under an audit at least once every five years with a media campaign to alert self-managers of this through ILC partners and established trusted communication channels. Awareness of this will assist participants in having greater responsibility by playing an active role in the sustainability of their plan and the NDIS.
• If participants consistently fail to action invoices through PACE or otherwise, a new determination of self-management will be considered at the next planning meeting.
• Participants accused of misusing funding will be placed back on plan management, ensuring choice and control and access to appropriate support continue.
• Once a determination of misuse has been made, the decision must be able to go through the RORD process.
• ?Participants must continue to have access to mainstream businesses providing support best suited to the participant and be paid for with NDIS funds.

I thank you for your time in listening to me and many other concerned participants. I am available for further at (redacted)

Thank you, Jarrod Sandell-Hay