'Faceless monster, secret society': Women's experiences navigating ... Australia's National Disability Insurance Scheme (NDIS), 2021, Yates et al

‘Faceless monster, secret society’: Women's experiences navigating the administrative burden of Australia's National Disability Insurance Scheme

Abstract
Previous research has indicated that administrative burdens are particularly high in personalised funding schemes such as the Australian National Disability Insurance Scheme (NDIS), because these schemes are predicated on very high levels of self-advocacy. Administrative burdens tend to be inequitably distributed, thereby entrenching existing social inequalities.

This is the first study to look at the lived experiences of administrative burden within the NDIS explicitly—and particularly those of women, who are underrepresented within the scheme. The research involved qualitative interviews with 30 women with disability who were either NDIS participants or had considered applying for the NDIS.

We argue that like other marginalised groups, women with disability are experiencing significant administrative burdens within the NDIS, which are barriers to obtaining sufficient disability support. Based on this finding, we recommend the NDIS implement a gender strategy, as well as address burdensome administrative processes in general.

https://onlinelibrary.wiley.com/doi/10.1111/hsc.13669?af=R


(originally posted on the news from australia thread)

 

That's an interesting paper! I'm glad someone's looking at this. It rings very true to me. I wonder how this compares country to country?

Abstract
Previous research has indicated that administrative burdens are particularly high in personalised funding schemes such as the Australian National Disability Insurance Scheme (NDIS), because these schemes are predicated on very high levels of self-advocacy. Administrative burdens tend to be inequitably distributed, thereby entrenching existing social inequalities. This is the first study to look at the lived experiences of administrative burden within the NDIS explicitly—and particularly those of women, who are underrepresented within the scheme. The research involved qualitative interviews with 30 women with disability who were either NDIS participants or had considered applying for the NDIS. We argue that like other marginalised groups, women with disability are experiencing significant administrative burdens within the NDIS, which are barriers to obtaining sufficient disability support. Based on this finding, we recommend the NDIS implement a gender strategy, as well as address burdensome administrative processes in general.

 

Based on this finding, we recommend the NDIS implement a gender strategy, as well as address burdensome administrative processes in general.

No doubt women have a harder time of it. But the scheme has been quite deliberately trashed for participants by our federal government over the last 8 years, just because 1) it was introduced by their political opponents, and 2) they hate any form of social security. The whole rest of the social security system is also being trashed.

 

NDIS is very hard to get for anyone with ME. They want lots of recent tests and reports, and mine were mostly from twenty to thirty years ago. I also faced losing my other supports unless I applied to NDIS, it was just about mandatory. So I had to apply with full knowledge it would fail, just so other supports remained.

 

Can you expand on that?

 

Yes. Apparently all other disability funding schemes for home support were dependent on you not being on NDIS and either you applied or support was cancelled. I applied knowing it would fail. Then they switched my support funding to some new scheme (might not be because of NDIS though) so it would continue.

Funny story, they organized a taxi for me to pick me up and take me to a meeting on this, and when the taxi arrived they didn't have a destination address. Neither did I.

 

Everything you got. I don't recall details, this was several years back. They want doctors reports proving disability, and dislike disability due to illness. It was geared toward major physiological damage as a cause of disability from what I gathered.

I know one lady who got NDIS disability who had ME. It was a major struggle though, and needed lots of help with forms.

 

Thanks @alex3619

 

I agree with this. It's really a shame what's happened to ndis, how bureaucratic it is and how many people are left out of needed support.

I haven't applied for ndis yet, but for any other aussies reading this, there's a very helpful facebook group "ME/CFS & the NDIS" with a number of people who have successfully applied for and received support through NDIS. Once I've been sick 5 years (from what I can tell you either have to be nursing home level care or sick for 5 years to get ndis for mecfs) I think my application and the process as a whole will be easier to face with the knowledge from that group. There's also a separate fb group for applying for dsp with mecfs that is very helpful.