Response to Recommendation from the NDIS Review

I am writing in response to the recommendation of the NDIS review and in particular the changes in favour of large, registered providers and recommending people with disabilities being forced to use registered providers.

Quite frankly my worst fears about the NDIS Review came true. Forcing people with a disability to use registered providers is not what I (and I am quite sure the majority of the disability community) asked for. It’s what the registered provider lobby wanted so they can destroy their competition, take over the market and line their own pockets.

THE TASKFORCE must now listen to people with disabilities, like me, and stay true to the promise of choice and control by guaranteeing that all NDIS participants can decide for themselves who provides their support and when – this is what the disability community fought for and were promised.

I have cerebral palsy and am a NDIS participant. I have also completed a double degree at university and shortly will be embarking on higher studies. I self-manage my own funding and directly employ non - registered support workers, Occupational Therapists and Physiotherapists. I negotiate cost effective hourly rates to make my funding go further, I self-direct the support I require and to the standard I expect, and then I pay them directly, before claiming back through the NDIS Portal.

I recruit the support I need through advertising and interviewing to ensure I employ the right and most appropriate staff who provide me with the highest level of care that I expect and demand.

It is clear therefore and suffice to say, I do not want or need the same level of safeguarding as others may, nor should I be forced to.

To say the NDIS Review recommendations is insulting to me, would be a complete understatement. I am more than capable of advocating for and maintaining my choice and control in who provides my support, who comes into my home, who I go out with and who provides my personal care.

For me, who is embarking on higher studies at university, after completing 2 degrees concurrently, because I choose to use non-registered providers, the NDIS Review recommends I now need to apply to be able to do so and then I have to pass a “risk assessment”. This is nothing short of delusional and insulting. I would be far more qualified than anyone administrating these so called “risk assessments”.

If a participant does not wish to self-manage, they can exercise their choice and control and select a different pathway, be it Plan Managed or Agency Managed. This is the strength of the NDIS and what should be protected at all costs.

However, please do not belittle me or further insult me by questioning my ability to make decisions on who I choose to employ or can I pay bills. Just because a person has a disability like myself, doesn’t mean we are lacking in intelligence.

I also don’t think the taxpayer would appreciate how much more our funding budgets would blow out too if we had to use registered providers. If I could not self -manage and choose non-registered providers, my funding budget would increase by over $200,000 for my 3-year plan if I moved to a registered provider. That’s how much I alone contribute to preventing the NDIS cost blow out getting worse than what it currently is.

To counter act this, the only option I see to prevent further cost blow outs, is that government will be forced to cut our funding and minimise our supports.

I would sincerely hope this would not be considered.

I also want to know, why would I have to continually prove I have cerebral palsy via an independent assessment? Last I knew there was no “cure” for cerebral palsy. There is no need, nor do I want or choose to have intrusive and ineffective tests forced on me by so-called “experts” who do not even know me. Just another cost to be added to the current NDIS blow out.

Mr Shorten, the Minister of the NDIS, promised to rebuild trust in the disability community when in fact he seems to sold us out to the large, registered providers and completely ignored what the disability community have communicated. This is nothing short of cruel and has devastated the majority of the disability community.

These large, registered providers believe the solution to their financial issues is to get the government to ban all

non-registered providers. This is completely unacceptable, and it violates the key principle of choice and control that are the foundation of the NDIS that the community fought so hard for.

Registration does NOT guarantee quality, nor does it guarantee a participant will be safe. In fact, the reason I chose to move away from registered providers was due to the fact of the substandard quality of support workers, servelack of care and the lack of response to my complaints by the provider.

People with a disability have the right to exercise choice and control, including a direct employment model, and to continue to self-manage in its current format as I do.

We know that people who have a disability need to receive the funding to access support to live a good life and to do so, they must be free to choose or build the most appropriate support arrangements that work for them.

Satisfaction with support improves when a person with a disability is in control of who provides their support. It is why the number of agency managed participants keeps dropping, people with disabilities don’t want to be restricted to registered providers. We really value and NEED the option to choose registered OR non-registered providers.

Real choice and control are what the NDIS was supposed to be about and the disability community (people with disabilities, families, carers, support workers, support co-ordinators, OT’s Physio’s, Speech Therapists, cleaners, gardeners, etc., etc., etc., …….) will fight to protect our right to choose our supports, registered or non-registered without going through these additional ridiculous “assessments”.

We will not be treated like second class citizens.

THE TASKFORCE must listen to people like me and the rest of the disability community when I tell you what I ned and how I want to live my life… as ordinary as possible – NOT the NDIS Review or the large, registeredproviders telling THE TASK FORCE what I need or how I must live my life.

Please understand the importance of self-individualised arrangements of self-determination and dignity of risk and having the absolute right and control over who comes into my home and who provides my personal care. Recognise all of our diverse capabilities, skills, needs and above all preferences. Most importantly you must recognise the conflict of interest of large, registered providers - this will only result in more profits for them and less choice and control for people like me.

The NDIS Review is a direct attack on my right to self-manage my supports and the principles of choice and control. I, along with thousands of others, fought long and hard during the formation of the NDIS and we will allfight again to ensure they are maintained. Our right to self-management and self-determination will be protected.

I fought for an NDIS where I would be in control of my life, where I make decisions that affect me, includingwhere I live and who I (if I choose to do so) live with.

I will not accept the NDIS Review recommendations and reject them outright.

I want and will continue to self-manage, I will continue to directly engage all of my supports, meaning I have adirect relationship with them and not through a third party who will take my funds and then dictate how mysupports will be provided.

I will continue to pay for my supports and then claim through the NDIS portal as I currently do. This is whatan ordinary life looks like: you engage a service, you receive an invoice, and you pay it.

I will not be subjected to a round of more assessment to determine my disability nor will subject myself to arisk assessment.

And finally, I absolutely find the term “Disability Adapters” to be appalling and degrading. I ask the TASKFORCE,would you be so confident in implementing Aboriginal Adapters, Transgender Adapters, LGBTQIA Adapters? I thinknot so please don’t further insult me by telling me I need some sort of adapting.

The disability community is used to fighting for our rights. It is not just the approximately 650,000 participants onthe scheme. It is now all the non-registered providers, Therapists, Support Coordinators, Advocates, LifeCoaches, plus family members, carers, neighbours who provide top up supports - this list goes on and the numberkeeps creeping up. There are many in the community who have already taken up the call and are mobilisingto fight to

• stop the NDIS Review recommendations.

Even my colleagues at university are appalled at what they see is happening and have volunteered their time to take up the fight.

I don’t accept the recommendations, nor will I be subjected to them. Nor will the disability community.

Finally, I know the NDIS has to be sustainable now and in the future. I need it and rely on it to live my life as best as I can, as do thousands of others. But any decisions and recommendations have to be with consultation and direction with the disability community first and foremost….. not some NDIS Review and certainly not the registered providers dictating how the NDIS looks and operates. We may have a disability, but we are members of the community, we work, go to university, pay taxes, we volunteer, get married, have children, and yet we are still treated appallingly, and our concerns so often disregarded.

Which is why we now must continue our fight.