The Myth of Choice and Control

The National Disability Insurance Scheme (NDIS) is on track to put choice and control squarely in the hands of people with disability, their families and carers.

The NDIS was expressly created to replace a fragmented service system that gave people with disability little choice, and to move away from the decades-old practice of providing block funding directly to service providers.

Participant choice and control has always been, and will remain, central to the delivery of the NDIS. Funding is provided to people with disability, who can then choose how best to use those funds on the supports and services that will help them to meet their needs and goals.

(Taken from “Pricing update and more support for participant choice and control, NDIS Website)

Take a look at this line from the last paragraph of the above, “Participant choice and control has always been, and will remain, central to the delivery of the NDIS.” I am here to tell you that this is almost a myth. Certainly, now that people with a disability do not have to beg to big organisations receiving block funding for support, choice is a lot better. But I am not sure choice and control as people with a disability see it and choice and control as the NDIA see it are the same thing. In fact, I think they are worlds apart.

Yesterday I was engaged in a discussion on the NDIS Grassroots Page. The page has in excess of 53 000 members. Some of them are service providers and indeed executives of the NDIA. They kind of spy on people with a disability to see what they are saying. When I worked within the NDIS environment the administrators would sometimes tell me to be careful of what I was saying. “Gary ….”, they would warn me, “ Be careful the NDIA watch this page and we need you within.”

But anyway, the discussion yesterday centred around a guy that wanted meal delivery. He simply wanted some independence to have well cooked and healthy meals delivered to his home. He is, apparently, supported through the NDIA Complex Planners unit. This suggests he has some high support needs. Most likely he can’t shop or cook on his own. He wanted meal delivery but was refused.

The reason being that he had high support worker hours. The Complex Planner deemed that the support worker could do all of the participants shopping and cooking and that was enough. I sure hope his support worker is a good cook and knows how to handle food properly. Point being is that, if you follow what has been said above, the man should be able to make a choice as to how to use his funding … The NDIA say – “Funding is provided to people with disability, who can then choose how best to use those funds on the supports and services that will help them to meet their needs and goals.”

Ok the man says he wants healthy home delivered food, and thats his goal. It is certainly reasonable and necessary because he can neither shop independently nor cook. His support worker could help to heat up the delivered food and provide support for feeding if needed. A perfectly reasonable request. “NO!” says the Complex Planner because his support worker can shop and cook for him. But this is not what the person wants. He wants healthy, cooked and delivered meals. He would still pay for the food but would use NDIS funds for preparation and delivery.

This is how he wants to use his funding but Complex Planner has said no because, and I quote, “Healthy food is a health responsibility.”  Apparently, also, the planner sought advise from the NDIA Technical Advise Team (TAT) who deemed it a reasonable request but the planner overruled them. Choice and control?  Clearly it is anything but.

And you know I reckon the Complex Planner has support within the NDIA for this hard nosed decision. You can hear them clapping from here. “Oh well done ..” they are probably saying, “Its all about value for money …”  One’s health, one’s choice, one’s desires – Nah, doesn’t come into it. The participant is rightly frustrated and angry. His independence, dignity and ability to make his own decisions has been taken away from him. It is wrong.

Recently there has been much discussion about NDIS Ministers comments that NDIS funding should not be used to meet a participant sexual needs. The Minister sought to sensationalise things by publicly stating that NDIS funding was not going to be used for prostitutes on his watch. That wonderful example off a human being, Pauline Hanson, jumped on the  bandwagon supporting him. The gist of it was that they wanted to pass legislation to prevent any NDIS funding being used to meet a participants needs around sex and pleasure.

There are many participants who, for whatever reason, cannot meet their needs for sex and pleasure. This can be physical, might be related to mobility needs or it could even be related to behavioural, communication and social needs. Like all human beings, people with a disability have desires and needs around sex. This could be help to have sex or modified aids. Definitely reasonable and necessary and certainly meets the NDIS mantra of an “Ordinary Life.”

But Minister Robert is having none of this. He is besides himself that a person with a disability might want intimacy, pleasure or just good old fashioned sex. GOD FORBID – And apparently thats a large part of his ire, that this conflicts with his religious beliefs. Choice and control?  Whose choice and whose control? Seems like yet another non-disabled person deciding what fits the mantra!

There are way too many people that work within the NDIS environment that see themselves as gatekeepers. They don’t see themselves as enablers. An enabler looks at the legislation and says, “How can I use this legislation so that the person with a disability can achieve their goals?” The gatekeeper does the opposite and says, “How can I save the tax payer some money …” Or worse, like Minister Robert, they try to impose their own moral standards on others.

Sadly there are too few of the former and too many of the latter within the NDIS. Choice and control is largely a myth. This is why parents have to give up work because the NDIS decides that after school care have to provide disability support for kids with a disability. Or they say it’s a parental responsibility. After school care is largely run by private contractors with no clue about disability meaning kids with a disability are often not be supported properly. The fact that after school care can contribute to  social, communication and physical development of the child never seems to come into consideration.

Deaf people cant choose to study with private providers who have no extra funding for disability support. Why? because the NDIS says that disability support for study is a state responsibility. This ruling conveniently forgets that this only relates to state funded courses and not private organisations. This means the Deaf students choice and control of what they want to study and where is severely limited. I have three people who I am assisting currently who wish to study MBA or computer courses with private providers but cannot because the NDIS refuses to acknowledge that private providers do not receive support from State Governments for disability support.

Let’s not get started on Independent Assessments where people with a disability must use a professional appointed by the NDIS and not the professionals that have worked with them and know their issues over many years.

Choice and Control?? It exists in pockets of the NDIS and its probably better now than it was before the NDIS, but largely it is a myth. Choice and control is just that. It should not be limited, as it is now, by the moral views and assumptions of people within the NDIS who are mostly non-disabled. Ableism at its worst!

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