Missing people, missing data

NDIS Review analysis

I’ve been making my way slowly through the final report of the NDIS Review and the supporting documentation, pondering their findings and the myriad conversations I’ve had with folks over the last year about disability support.

Thousands of disabled people, families, supporters, organisations and others contributed to the Review in so many ways and with so many words. I wrote and said more than a few of those.

What I didn’t do though, is talk much about my own disability support, my own fracturing system of containment, management, whatever the words are. The supports costing me a fortune, or those I go without with significant consequences. I don’t talk about that.

It is hard to do this work of advocacy though without thinking about our own experiences. Those deep, etches of pain and fear; the exclusion and the grief; the hard won expertise about how fragile those supports can be.

Last year, I was in one of the many discussions about the Review, this time with predominately non-disabled people, providers and others, for whom disability is this abstract thing they make their living from. Frustrated, I talked about the dehumanising experience of having no control over people coming into my home, touching my body, talking about me as though I’m another species. The virtual room became quiet, awkward with this real life apparition of what they had been discussing. They quickly moved on, and I learned, yet again, that actual lived experience isn’t much wanted.

I read the Review through this lens, my weird emotions clanging around inside as the stories of disabled people intersperse between horrifying graphs detailing how much has gone wrong with the Scheme. I see myself reflected in many of them, but I also know that there are so many experiences that I don’t have, and never will.

I’ve never been to a special school, or worked in a segregated workplace. I’ve never lived in a group home, or a boarding house. I’ve never been in prison. 

So I read some more, listening to those who have had these experiences, listening to their expertise about what this is like and what they need. I look at the data about what is happening to people with these experiences and think through the kinds of advocacy that they are calling for.

And so I’m going to start this look at the Review with the issues that keep me up at night, thinking about the disabled people who get no choice and control, who have been failed by the NDIS, failed by the market in social care, and to be honest, failed by advocates like me.

The Review is huge, as is the Disability Royal Commission. But there are some common elements between the two, most importantly how people with an intellectual disability are still living often in the same kinds of systems as they have for decades, with much of the promised changes not even touching the sides for them.

Today’s post is about some of those people and what the Review reveals, far away from the headlines. The next post will look at what the Review recommends for change.

[As an aside, I will get back to the DRC this year, finishing off the various half-written posts. I am keen to trace these connections between these two huge reforms and to see if that paints a picture of the kind of future we could dream of.]

Missing disabled people

There is some secrets about the NDIS that we all know, but aren’t widely understood. There are thousands of missing disabled people, mostly people with an intellectual disability, and no one in the NDIA knows where they are or what is happening to them.

There are also thousands of disabled people, mostly people with an intellectual disability, who live in large, old group homes, who have never been asked about where they want to live, or what they would like to do.

These are people with large support plans around $500,000 per year who also pay most of their DSP in rent and groceries, and for those in old group homes, also receive funding through Specialist Disability Accommodation (SDA), a funding subside meant for developers of accessible housing.

These disabled people aren’t getting the kinds of lives they were promised through the NDIS, and at the same time, the costs of their support are a third of the total cost of the Scheme. So any cost-cutting or austerity measures will fall disproportionately on these very disabled people.

They don’t get endless editorials in the Australian or the Australian Financial Review. They don’t get the attention from large campaigns for change, or significant political engagement. This group of disabled people are often spoken for by service providers, with little shame about their own self-interest in the current status quo. The market in social care has delivered billions in revenue for a range of providers, good, bad and diabolical, with little ability for disabled people and their families to choose between them, let alone imagine much more.

The NDIS Review supporting documentation reveals how bad the situation is for many of these disabled people who get so few choices and little control.

There are two types of funding associated with home and living supports - SDA for home, and Supported Independent Living (SIL) for supports. The Review says that"

'At 30 June 2023, 1 in 20 participants had SIL funding in their plan (5 per cent). In the year to 30 June 2023, payments to SIL participants for the support category Assistance with Daily Life were $8.8 billion, representing a quarter (25 per cent) of total scheme payments.'

Home and living supports, were a key area for the Review because of the size of the spending, but also because of what is actually being delivered for that investment.

Time for some data - 23,092 people had SDA funding in their plan, and 31,509 have SIL. Of the entire NDIS, 7,259 claimed any kind of home modifications in their plans. Only 747 people have funding for Independent Living Options (ILO), an alternative to SIL.

There are also a significant number of people who get funding for daily supports (about 9000) not through SIL. This kind of intensive personal support is growing faster than the overall Scheme.

The Review also flagged another group who is missing out altogether from this support due to the care provided by an older family member. 

“We analysed 2021 Census data, and found there were approximately 17,000 people aged under 50 who needed assistance with core activities, did not currently receive SIL support, and lived with a household member that provided unpaid care who is aged over 65.” [p546]

Despite the large amount of spending on home and living supports, the Agency has poor oversight of what is happening, saying that “for participants flagged as having SIL funding, 22 per cent were missing data on who they lived with and just over a quarter (26 per cent) had their living context recorded as ‘other’.”

So the Review looked at other data and found that:

“Living arrangements also vary considerably depending on a person’s type of disability, and those with intellectual disability are particularly disadvantaged. Those with intellectual disability aged between 15 and 64 are most likely to be living with a parent/primary carer as a non-dependent child (39 per cent). This is compared to 12 per cent of people with sensory disability and 10 per cent of people with physical disability.¹¹³⁸ Less than a quarter (22 per cent) own their own home, compared to 53 per cent of people with physical or sensory disability.¹¹³⁹ Irrespective of disability type, people with severe or profound disability experience poorer housing outcomes.^{1140 "}

They also found what many other inquiries have found - that people getting both their home and their living supports from the same provider have very little choice or say about their lives. This is happening to 2,388 people, so about 1 in 10 of folks getting SDA funding as per 2020 data, and I suspect has got even higher now.

Increasingly, what are known as ‘SIL-homes’ are being set up and the Review found that:

“Unlike SDA, there are no requirements for dwellings to have specialised design features. There is also no regulatory access by, for example, community visitors. There is poor security of tenure, and no limits on participant rental contributions. As an integrated housing and living solution, participants residing in these dwellings cannot choose another SIL provider unless they also relinquish their accommodation.”

These are the missing disabled people, living out in the suburbs in rented houses, getting SIL 24/7 support from the same provider of their housing, and no one knows where they are. The providers are often unregistered, so under no obligation to report restrictive practices, to let anyone in to check what is happening, or to deliver anything like choice and control.

This is also happening in boarding houses, or Specialist Residential Services, yet another wildly inappropriate euphemism for an institution. where the same provider runs the house, and controls the supports. No individual choices going on here.

What is happening to these folks behind these closed and hidden doors? The DRC was clear about what is known about what happens in group homes and boarding houses, but also said that these disabled people were not covered by the current regulatory system, as flawed as that is.

The other two groups of overwhelmingly people with an intellectual disability who the Review talks about in this section about home and living are folks who were moved from the large residential institutions into group homes, and those who are living at home with ageing parents.

The Review calls this first group ‘transitioned participants’ who:

‘have lived their entire lives in some form of institutionalised arrangement and have never been given any meaningful opportunity to have a say over where, how and with whom they live.’

Part of the reasons this group of disabled people remain excluded from the community is that the funding meant to support their inclusion is being used to prop up the old large group homes they live in. As at June 2023, 37% of all SDA funding is going to these old group homes. Disabled people who live there share with many other people. The data shows they are:

• 377 Basic SDA 4-resident group homes
• 584 Basic SDA 5-resident group homes
• 195 Legacy SDA dwellings (6 + residents)

As little as 7,000 new places have been created through SDA spending.

Many of these old group homes used to be owned by state and territory governments, but are now either owned or operated by non-government organisations. Additionally, the NDIA doesn’t know where all the SDA properties they are spending money on, are. There is no strategy to get change, no coordination or direction from the NDIA, or from state and territory governments.

Of this group, there are just over 2,000 older disabled people living in these places who aren’t eligible for SDA funding - the Review recommends this changes urgently.

The Review also found that despite these disabled people never getting a fair go under the Scheme, that if they do eventually move out ‘of an ageing dwelling with four or more bedrooms, the NDIA was unwilling to change the remaining participants’ support ratios to reflect the group’s smaller size of the remaining residents’.

So folks who get funding for shared support in these old group homes lose no matter what happens.

Disabled people living with ageing parents

This is the second group the Review names as needing significant attention by the NDIA. Again, they call out the Agency for having no visibility or data about this group, despite the significant numbers of older disabled people living with much older family members, and the lack of planning for when that support can no longer be provided.

The Review says that: 

‘we believe adult participants living with ageing parents should be prioritised for a reassessment of need and to explore and trial alternative living arrangements.

Currently the NDIA has limited visibility on the number of participants living with ageing parents. Addressing this lack of data is an essential first step to ensuring these participants can access the support they need and give much-needed comfort to their loved ones that their child will be supported once they are no longer able to support them.’ [584]

This should not be a surprise for anyone, particularly not in the NDIA. Older parents have been protesting and campaigning and fighting for decades for their adult children with significant disability, driven by the fear of what happens to them when they can no longer care for them. 

Market failure

In just this particular snapshot, the same statement appears over and over - the NDIA has no data, no visibility, no idea. Wild.

My scepticism about the capacity of markets to deliver for disabled people is well known, but even I’ve been shocked by the extraordinary adherence to ideology inside the administration of the Scheme as laid bare by this Review.

The Agency, under the previous Government and CEO, let the market rip, escalating costs and increasing abuse of disabled people as profligate wastrels of taxpayer funds. But nearly two years after the change of regimes, both politically and in the Agency, there is still little sign that real regulation is on the agenda for anyone.

Instead, focus has increased on disabled people, forced through endless hoops for small amounts of essential supports, all while sharks are allowed to literally abduct disabled people and take them away to god only knows where, all while pocketing millions of dollars. 

And yet, the Review says that:

‘NDIS markets – when well designed and functioning – can be a powerful tool to encourage service providers to be more responsive and effective in achieving outcomes for participants’ [p681]

How?! What bloody signal is going to make a market value disabled people, particularly people with an intellectual disability?

I’ve written enough for today, so will get into the proposed solutions in the Review, and how they overlap with the DRC, in the next few posts.

If you want to hear a broader discussion of the Review, the latest episode of Reasonable and Necessary is worth a listen. Team DSC is also publishing a range of excellent analysis. And in a plug for my own team at DANA, they've been doing amazing work looking at both the Review and the DRC. And for a perspective on the NDIS from the UK, have a read of Disability Debrief's essay on this.

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