Thread by @criprights

This is a thread for those who don't know about how the NDIA is rationing or capping funding for disabled people and I suggest you folks in policy follow along closely. Because we people on the ground do. Tagging @NDIS for transparency, @NDISDeane, @DarrenODonovan, @rhondagalb

2/ Let's talk about SIL. That's Supported Independent Living, for those who do not know this.

The information in the thread below is from disabled people, families and people working in the sector every day - @SquigglyRick, you should also play along.

3/ There is a massive push by the NDIA to negotiate with service providers to the exclusion of participants. Huge discrepancies between the way SIL is handled, from state to state & office to office & planner to planner.
None of the issues are in the op guidelines/legislation.

3/ If you have SIL funding, you are not permitted to self or plan manage. It's not an operational guideline but a practice. So if you're a quad who has worked their whole life as the CEO of a bank, you're not allowed to manage your own supports.

Take THAT to AAT - noone has.

4/ The NDIA is insisting on a SIL quote being submitted before a planning meeting. That means the participant is denied the opportunity to present their full plan all at once and in their own words. There's no draft quote so you can align in home and community supports.

5/ The NDIA will not permit anyone but a service to submit a SIL quote. And then the NDIA and providers liaise together over the content of SIL quotes and exclude participant from this conversation. The guidelines also allow for the NDIA to request a quote however because they..

6/ ...are requesting the quote before the planning meeting, the only person who can brief the provider on what to include in the quote is the participant, therefore they are the only one who can request it.

A SIL quote is requested by participant. they should be able to submit.

7/ The NDIA is refusing point blank to make planning appointments until a SIL quote is submitted by the service provider.

This is contrary to the principles of the NDIS.

8/There is clear evidence that the NDIA is using the SIL quote to decide what funding they will offer the participant, even before they have had a planning meeting.

This is contrary to the principles of the NDIS.

9/ The NDIA is demanding that the SIL quote be submitted in their format and according to their guidelines. This is against the legislation, which says that a person can submit their plan information in whatever format meets their needs.

10/ One interpretation of the SIL process is that it is illegal because it fundamentally denies choice/control by asserting that shared accommodation is the only option for people w/complex support needs. It's the go to solution adopted by NDIA rather than solution of last resort

11/ There's evidence that the NDIA are negotiating SIL arrangements directly with providers, organising planning meetings with providers with the participants either excluded from those discussions or marginally involved.

12/ This is what is on the horizon - thousands of people stuck in group homes because a bunch of complacent service providers and NDIA staff just want to continue the nice cosy relationship they've had in the past.

And are we tracking who is living in congregate care? Are we?

13/ Again, those who are least able to advocate for change are being told that if you want change you have to fight for it.... but don’t expect any help.

14/ Some quotes: 'every time someone asks for anything they are told to get an OT report. The OTs are burnt out and withdrawing from NDIA. They’re being asked to do things that aren’t their job like assist people to identify communication devices.'

Or electric shavers.

15/ I want to raise an important point. There are guidelines and then there are practices. The practices are not transparent. Eg, in NDIS Grassroots Discussion the other day, ppl said that they were consistently told that their child 'couldn't access continence aids til age 5'

16/ Now, there is nothing to say that there is an actual age for knocking this back. But we figured it must be written, because kids a week off their 5th bday are being told 'next plan'.

Most non disabled kids are toilet trained by 3 or 4. No op guideline - so why this rule?

17/ Well, there are 'task cards'. It's a scripted set of rules that are handed to delegates (as well as LACs, but geared more to delegates). They're geared for navigating the CRM step by step breakdown, but they are prescriptive 'on the ground' rules, for what we can work out.

18/ The Task Cards set out the guidelines for what the planner can approve and the process that they need to follow. If they don't follow the task card & try to approve something outside the guideline, they are told to adjust the proposed plan to fit inside TSP or other benchmark

19/ Bear in mind that they also use 'reference packages'. So that is a cookie cutter template where if you are a 22 year old guy with DS, you're going to be mapped against a ref package for a 22 year old guy with DS - no matter what your goals are, co occurring disabilities, etc

20/ If you look at the SIL process, the task cards, the typical support packages - you realise this is a conveyor belt process where the outcome is predetermined and the promise of individualisation is a farce.

@SalRob310 - you across all this stuff too? @ainehillbilly?

21/ I understand that this is a big, complicated system.

I also understand people's lives are complicated.

But this system is not working.

The reason it is not working, #NDIS and #auspol, is because it is not designed with & by the people who will be living within it.

Fix it.

22/ I will also talk here about informal supports.

Informal supports are not children.We are supposed to support them.

I don't know how this part of your algorithm reduces our funding, but it does. I see the planners eagerly scrambling to assume informal supports during plans

23/ Informal supports are not your blind 83 year old mother. They are not your friends if they provide 'emotional support'. They are people who do the jobs that replace paid support and br/others and sisters you are hella not going to fund 'emotional support', are you?

24/ In my own planning meeting, I was asked if the members of my Scout Troop were 'informal supports'.

They are 10 and 11 year old kids. I'm their Scout leader.

They do not provide anything that approximates a replacement for reliable, paid care, even when they push me uphill.

25/ I think, but don't know, that the system uses those 'informal supports' to calculate how to ration our funding.

They also ration it by invariably reducing it after year 1, even if there is no evidence of capacity being built/need being reduced. I don't know how that's done.

26/ This system needs an urgent intervention. I don't know what that looks like, but I suggest perhaps a lens that includes the human rights element and principles of the NDIS being cast over the operational systems - right down to your inaccessible NDIS offices and systems.

27/ And you need to remember - collectively, our groups of activists are involved in or run groups that have over 100K disabled people in them. That's a fuck load of mystery shoppers, NDIA. I know we have a great relationship with Comms and we try to play nicely but holy shit.

28/ If you smartened up - I am not sure why you have not - you would be putting the brakes on a bunch of stuff and saying woah this is costing us a fortune in damage control, let's co-produce some of this properly.

And no, I am not talking about your 'participant pathway'.

29/ You need to take all your task cards and on the ground processes and put them through a lens that says,'is this congruent with the principles of the NDIS Act/legislation and the Convention on the Rights of Persons with Disabilities.

All those hidden, on the ground processes.

30/ You need to get people who are actually players in this game and people whose vested interest does not include a commercial interest to be involved in designing, redesigning and tearing apart the shit that does not work, like the dodgy repurposed single diagnosis ICT system.

31/ You need to look at the outcomes that you're getting and work out where they are breaching the rights of disabled people, over and over - and see test cases as learning rather than an opportunity to make more rules to limit or cap things.

32/ You also need to start thinking strategically and remember why we have the fucking scheme in the first place. Remember that shit about returning carers to work, about getting disabled people into work to make the scheme pay for itself? Remember the whole PREMISE of the NDIS?

33/ By tightening eligibility so that fewer people can work, you're also restricting people who are perhaps more likely to work with just a little bit of support& you're therefore creating a false economy. Ditto increasing your reliance on 'informal supports',keeping carers home.

34/ By making every single tiny goddamn decision one that people need to fight and take to AAT, you're spending millions on lawyers. We're trying to get someone to take the 5 year old continence aid rule to court but by the time it gets there, the kid will be 92 years old.

35/ And if any of this is news to you - well, you need to either improve the shit out of your consultation processes or go and get a better job.

I'm going to my day job now because we do not get paid to support our people. We just do it in between being disabled and caring.

36/ And actually you know what we are really really bloody tired & we could all do with you doing your jobs so that we can go on living instead of fighting.

Love,
Samantha & a bunch of unnamed activist team members who have contributed to this thread

PS Get your shit together.