Just want to reflect a bit on the proposed #NDIS changes due to take effect this year.

I was on the verge of putting together an application when all of this started so this is impacting my personal decisions.

#RoboNDIS

I recently lost access to my city-based apartment where everything was close, including work and public transport, and where the local council had approved some support. I now live with my Mum in the burbs where it’s become much more apparent on a daily basis how impaired I am.

I need a mobility scooter (which I don’t have) or possibly an electric wheelchair, to get around the shops or do basic social stuff. I need help with cooking and household chores. I need someone to drive me to appointments.

My impairment is an energy impairment, which means I am prioritising between things that most people would just be able to do as a matter of course. Right now, I don’t often wash my hair or clean my teeth because I’m prioritising food prep, dishes and laundry.

My sister has cut down her hours at work so she can help me out a bit with things like vacuuming and getting to the doctor.

She lives over an hour away though, so it’s an awful lot of driving.

I might have to move even further away from her in the next year or two. Access to housing is a massive issue for me as I’m highly sensitive to mould and VOCs. The vast majority of housing is unliveable for me, so I might not get much say over the location of my next home.

Essentially, I need more support than what I have, and I may be losing the support I do have relatively soon. I need the #NDIS.

Problem is, with the proposed changes, applying for the NDIS will almost definitely mean a traumatic interview process followed by a rejection and no ability to appeal.

On the tiny chance I do succeed with an application, I could be risking punitive measures down the track it they ever decide I did not actually deserve the services they approved in the first place.

It’s safe to say I can’t afford this.

Why would the interview/independent assessment be traumatic?

I believe these assessments have the potential to be traumatic for any disabled person, but since I have #MECFS, I’m going to focus on the specific potential for trauma there.

Dr Nancy Klimas who studied trauma in chronically ill people was once quoted saying:

“I've had patients who met post traumatic stress disorder criteria, where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD."

Essentially, a lot of doctors know little to nothing about #MECFS and tend to fall back on assumptions and prejudices that harm patients.

From a patient perspective, it’s like being stuck down a well and the emergency service dude with the rope is refusing to throw it down because he doesn’t believe in wells.

It can take years to find appropriate healthcare. Many people with #MECFS live in fear that the diamond in the rough supportive doctor they’ve finally managed to find might retire or move practice.

The idea of being sent to a random allied health professional for an #NDIS assessment, where they will decide whether or not you get to have enough support to eat, dress, clean, take care of personal hygiene after one appointment, is freaking terrifying.

I have a supportive sister. I can’t even imagine how much more terrifying this could be for people currently depending on domestic abusers for personal care, which is a frighteningly common situation for people with all kinds of disability.

Over and above that, the standardised assessment questions they seem to have landed on seem to be focussed on what you can or can’t do on the day of the assessment, which is a totally inappropriate way to assess an energy impairment.

I’ve had 15 years practice managing this illness, so it’s rare now that I end up physically unable to do a simple task on demand. If an assessor asks me to make cup of tea, I’ll probably be able to do it.

But it will have been prioritised over something else, like feeding the cat later, hours after the assessor is gone.

In addition, an hours long interview where you are forced to discuss your deficits is in and of itself traumatic.

I fell into a deep depression for weeks after my last DSP review, despite passing it successfully, because the deep delve into all the ways your life sucks in comparison to what is considered “normal” is fucking soul destroying.

On a day to day basis, we are not hyper-focussed on how we are different. We develop routines and we get on with it. We normalise it. We are not directly experiencing how the other half lives for a comparison.

But assessments like these force you to face it head on, with no care taken by assessors to manage the distress and grief they’ve caused. They hold your basic human needs hostage to their dehumanising processes, oblivious to the destruction in their wake.

But say someone with #MECFS manages to get through all this and actually get on to the #NDIS. You have now committed yourself to going through this process over and over again, every time they review your plan, for as long as you remain on the scheme.

And if the Government have their way, they will also be entitled to demand your NDIS funding back if they later deem you didn’t need it. Given the subjective nature of “reasonable and necessary” and the general stigma around chronic illness, the risk of this happening seems high.

I simply can’t imagine a system of checks and balances that could effectively protect disabled people in a system where this is allowed.

I need the NDIS. Based on current legislation, I am absolutely entitled to NDIS support. I’m waiting to see what happens with these changes though, because ultimately, the capacity to regularly wash my hair, clean my teeth and get around the shops may not be worth the trauma.

@bluntshovels @WWDA_AU @PWDAustralia @EmergeAus @NDIS @WDVtweet @EveryAustralian

#NEISvoid #HandsOffOurNDIS #MillionsMissing