Carl Thompson

There has been a massive outcry about the NDIA’s decision to completely change the NDIS access and planning process.

While there are well-documented issues with using independent assessments to determine NDIS access and eligibility, I want to explain how the flawed plan to have independent assessments used to determine the majority of funding in an NDIS participant’s plan has affected me personally.

But first, a quick summary of the upcoming changes:

• People with disability will have no input into their NDIS plan budget. A three-hour assessment full of yes/no answers will determine our level of funding.
• Allied health professionals with close relationships to people with disability will no longer have any input into our NDIS plan budget. A complete stranger knows best, apparently.
• People with disability will not be able to appeal decisions made regarding their NDIS plan budget. If we disagree with the type and level of funding, we can either take it or leave it.

Just about every disability organisation in the country has come out against the proposed changes, with all of them saying the NDIA has not consulted with them adequately. Further, allied health representative bodies have also come out against the proposed changes, citing the planned usage of incorrect assessment tools and their lack of validity when used to make any decisions around NDIS plan budgets.

The NDIA and federal government have said the reaction to the introduction of compulsory independent assessments has been ‘mixed’. This is a lie. The reaction has been loud and clear; people with disability do not want this, families of people with disability do not want this, and disability service providers do not want this.

All of the above thoughts have been made crystal clear through multiple media releases, submissions to the Joint Standing Committee, and direct feedback to the NDIS’ ‘consultation’.

I have always been supportive of the NDIS. I advocated for its introduction, promoted it around the country through running workshops, and have been a poster boy at official government NDIS events.

#NDIS participant Carl, pictured w support worker Chelsea, on his newfound independence, “now my parents can enjoy their retirement!” pic.twitter.com/slZ3U1fpQL

— NDIS (@NDIS) January 5, 2017

But enough is enough.

We are not being listened to and I have had it.

So, what did I do? I quit my job as an NDIS Local Area Coordinator (LAC) in direct protest of the introduction of independent assessments. I simply cannot bring myself to be a representative of a scheme that no longer puts ‘participants at the heart of everything we do’.

I have felt sick, bringing myself to work and consistently seeing the internal chatter and marketing spin from the NDIS CEO and executives that frame independent assessments as being ‘best for us’. I have a disability, I am an NDIS participant, and these changes are not ‘best for us’.

I did not quit my job right away. I thought the upcoming introduction of independent assessments was just an idea. I thought the NDIA would listen to people with disability and their supporters and take their feedback on board. I thought I could participate in the feedback process like a good employee, trusting that the NDIA would see sense and adjust the proposed changes for the better. I thought they would listen. I could not have been more wrong.

The NDIA, both internally and externally have consistently told everybody that the changes to NDIS access and planning are in our best interests. They will make decisions more ‘fair’.

Is it fair that under the changes, I will have absolutely no say about how the funding in my NDIS plan is put together?

Is it fair that a stranger must interrogate me for three hours about all of the things I cannot do because of my disability?

Is it fair that one of my family or friends needs to be involved (without me present) and asked to dissect every facet of my daily life?

Is it fair that my budget will be rationed out to me in small increments, like a child who cannot be trusted not to blow their money on lollies?

Is it fair that I cannot ask for another assessment or appeal the results if I believe mistakes were made during the grilling?

And finally, is it fair that all these decisions were made without genuinely consulting the very people they will directly affect?

I do not think any of this is fair, but I am not going to just sit and take these changes as a given. In employment, they say people stay in their jobs because of the culture and leave for the same reason. Working under the direction of a government department that says one thing (we put participants first) yet does another (gaslighting participants by saying the changes are in our best interests, even though there is unanimous opposition) makes me feel ill.

The NDIA calls the changes ‘reform’. If this is reform, I do not want to be part of it.

Was quitting my stable job scary? Sure it was. Do I regret it? Not for a second. I will fight these changes, just as I have fought for the NDIS before. NDIS CEOs and Ministers with their grand ideas about ‘reform’ come and go, but this is my life, and I am not going to be silent anymore.

Carl is a disability advocate and NDIS participant, who has made numerous media appearances commentating on the NDIS. With personal and professional experience of the NDIS, Carl currently provides support to people with disability and their families around how to get the most out of their NDIS plans. Carl also runs a YouTube channel, where he educates people about living with a disability in a fun and informative way.