Rolling Through

Who do you live with?  Is it your choice?

What if the government said that, to solve the housing crisis, everyone had to live in households of no less than three? 

After all, rents are up.  Vacancy levels are down.  It’s tough for the 31% of Australians who rent our homes to find something. It’s only reasonable that people should be forced to share in those circumstances, isn’t it?

Imagine the outcry!  Australian’s wouldn’t stand for it. 

Or would they? 

It’s what appears to be on offer to disabled people in Australia who require 24/7 support. 

There’s no riot in the streets – yet – but there is but there is A LOT of conversation online among disabled people about it.

Where has this come from?

Australia’s National Disability Insurance Scheme is calling for split support

On the 7^th of December last year, while most people were focused on their end of year break, the government released the final report of the Independent Review into the National Disability Insurance Scheme (NDIS).

The NDIS is a scheme that provides funding to Australians with significant and permanent disability to help us meet the extra needs we have due to disability and enable us to have more of an ordinary life, like the non-disabled people around us, than we might otherwise get.  The scheme is now about 10 years old and the government is making changes.

One of the Review recommendations that really has people worried is this:

Funding for participants requiring 24/7 living supports should typically be on the basis of those supports being shared. In general, … funding should be based on an average shared support ratio of 1:3 (p123).

Now if three people all require 24/7 support and they are required to obtain that support from a single worker, what’s that going to look like? 

The two most obvious options are they could live in the same house or in adjoining homes.

It would impact a lot more than living space.  In order to use the combined services of a single support worker, these three people will have to timetable and co-ordinate the minutia of their lives. 

Natalie Wade an Australian lawyer, knows this story from experience.  She can practice law independently but her disability means she needs assistance with personal care tasks.  Natalie lived, for ten years, in a cluster house of 6 people, with private space but shared supports.

You’ll have 30 minutes to go to the toilet, 45 minutes to get into bed, an hour to get dressed and so on. If you ran late, your neighbours would be waiting, and the workers would be behind. I got really good at going to the toilet on demand, not a minute before or longer.

Yes, you read that right.  “Sharing” supports means using the toilet according to schedule.  Every day.

Practically, it also means congregated living – disabled people being required to live together on the basis of a single shared characteristic – disability.

Congregate living separates disabled people from the general community and contributes to segregation – disabled people living separated from the general community.  It marks us out as different.  It makes us, “special”; one of the most duplicitous and evil words in the English language when applied to disability.

Special is not always good

When you’re “special” the usual rules don’t apply, but somehow that’s ok by the people who aren’t “special”.  It’s ok to separate you from everyone else and stick you with your “own kind” without regard to what you actually want.  It’s ok if someone else decides where you live and who with.  And yes, it’s ok to regulate when you use the toilet.

I don’t know how Natalie managed to live like that as she completed university and held down a government job.  She did it for 10 years.  She made it quite clear, in the inaugural Disability Leadership Oration, that congregated and segregated housing, including cluster housing, is something we need to end.

Natalie’s not alone in that determination.  

Segregation is harmful

On September 29 2023, after 4.5 years of work, Australia saw  the final report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (DRC).  Some of the people the DRC heard from were residents of group homes.

As a result of what they heard, the DRC recommends phasing out group homes (Vol 7p 44-46). 

The DRC,

heard how people with disability have experienced violence and abuse from staff and co-residents in the form of physical violence, sexual assaults, sexual exploitation, psychological or emotional abuse, and harassment. We also heard about the use of coercive control and financial exploitation by staff members and the use of chemical and physical restraints.  .

(Vol 7, p617)

It’s tempting to assume that there must be good places, to admit that yes, abuse happens but assume it wouldn’t be the norm.  In reality, that’s just wishful thinking.

In Public hearing 3, Professor Patricia Frawley, an Associate Professor of Disability and Inclusion at Deakin University, described violence, abuse, neglect and exploitation of people with disabilities as ‘pervasive’ in group homes. She noted that it occurs ‘almost as part of the day-to-day practices in these environments’.

(Vol 7, p617)

Even when people are not being actively mis-treated, they are often isolated from the surrounding community.  That’s not a good experience either.

[Group homes] are like a little island. The only people that step onto that island are families, people that have responsibilities like coordinators or counsellors … or staff. ‘Heidi’s’ lived in the same house for 20 years, where she is now and there is absolutely no contact with the resident in the street. It is like they don’t belong in society.

NDIS Review Vol 7, p616

Natalie Wade described in her oration the way that, when she lived in the housing cluster, she “often caught people staring into the units, trying to get a glimpse of us”.  That’s not community building, welcoming, neighbourly behaviour.  That’s turning human beings into animals in a zoo.

It’s definitely not inclusion.

A group home is currently defined as catering for 4-6 people.  The NDIS Review proposes sharing supports between 3 people.  I can hear the assertions in the room as they wrote it.  “It’s not a group home.  It’s only 3.” 

I don’t believe for a moment that it’s the number that makes the difference.

Micro-institutions are still institutions

The difference between an ordinary home and an institutional “home”  (another deliberately duplicitous term) is how much say people have in their day to day life.

I once lived in a share house of 9.  We had to be a bit organised to make it work.  We had rosters for cooking and chores and regular house meetings.  It didn’t feel like an institution because we worked out together how to make it work and we constantly negotiated. 

It’s not about the number.  It’s the distribution of power.

When people with 24/7 support needs are informed that to have their needs met they must split that support with two other people, it sounds likely to result in micro-institutional living.

The Review tries to distance itself from this scenario, saying,

Participants should have flexibility to choose a living arrangement. The provisional budget should be individualised and not restrict choice of living arrangements to sharing supports with other participants with the same level of overnight support needs.

NDIS Review (p144)

That gives journalists a nice quote that sounds like it supports the human rights of disabled people to have similar choices to other community members.  Yes, people should have flexibility to choose; but what available choices do people have to make this work, other than being required to live in ghettos of disability? 

The Review offers no answer.

The Review ignores the findings of the DRC

In its supporting analysis, the Review argues that it’s unnecessary for disabled people with high support needs to be able to live alone (implying that is therefore acceptable to require people to live with others, with little choice as to whom).

The Review argues,

Living alone is not necessarily in line with community norms. In 2018, only 8.6 per cent of people aged 25 to 64 without disability lived alone, compared to 19.6 per cent of people with disability.  That people with disability are more than twice as likely to live alone as the broader community does not align with the scheme’s principles of promoting inclusion, nor the concept of an ordinary life.

(NDIS Review Supporting Analysis p564)

What a load of uninformed double -speak!  It gives no consideration to why disabled people might live alone or might want to.  It ignores the fact that many of them have already experienced a life that is highly segregated and far from ordinary, so that living alone would be much more ordinary by comparison.  It ignores the fact that it is ordinary to have the option to live alone.

It suggests the writers of the Review are already disregarding the findings of the DRC. 

 If you have been mistreated in a group home or even just had a miserable time, (as the DRC heard is not uncommon), that would be a good reason to prefer living alone. 

If you have had every decision in your life made for you by other people, and suddenly you can see a chance to make your own decisions by living alone, it might look pretty attractive.

If you are disabled, government regulation can actively work to keep you single.  Many people with significant disability depend on the Disability Support Pension.  Like other social security payments, the rules are such that if you live with a partner, your payment is affected by their income. 

Moving in together means that the disabled person loses the small measure of financial independence they have and becomes a financial burden to their partner.  It also makes it much harder for them to move out if the relationship doesn’t work.  This aspect of the system actively contributes to disabled people living alone.  It actively denies people the ordinary life experience of living with a partner.  Make social security payments Independent of partner income and a whole lot more disabled people will share a home with their person of choice and reflect community norms.

When most people move in with flatmates, or a partner, it happens through social networks.  If you’ve been socially isolated for much of your life in “special” spaces, away from the general community, how much opportunity have you had to meet people you want to share your home with?  You are alone because segregation means you’ve been denied the social opportunities of an ordinary life. 

It is completely unreasonable of the Review to tell people they can’t live alone because it doesn’t meet community norms when government supported segregation is what has denied them access to the community norm of the ordinary social life where people normally find someone to share their home with.

It’s all about costs and political choices

The NDIS Review is clearly focussed on containing the costs of the NDIS.  It talks inclusion but at times conforms to the standard line that disabled people are a burden and should be grateful for whatever we get.  Rather than addressing segregation and social isolation, it proposes, in this instance at least, a system that will continue and exacerbate them.

Stephen Hawking is probably the most famous example of a person who received a high level of disability support and lived an included and respected life as part of the community.  Would he have become a world famous physicist if he’d had to split his support with others?  Of course, most people won’t become famous physicists, but everyone deserves the support they need to at least live an ordinary life, included in their community and reach their potential.

Disabled people are just getting started

Before and since the NDIS, some disabled people have found creative ways to get the support they need and be included.

If the NDIS is serious about promoting inclusion and supporting, at least, an ordinary life, they need to look to people like Jacob Hughes, whose support network includes flatmates and friends as well as paid workers.  They need to talk to David and his flatmate Goran. Goran provides the support David needs to be part of his community, not segregated from it.  Jacob and David aren’t the only ones forging new pathways.

At the time I was born, some doctors were still advising parents of disabled kids to “put them away, in an institution, forget about them and have another family”.  (Fortunately, no one tried that on my parents.)  That’s a world away from Inclusion.  Social change on this scale takes decades. 

The NDIS has made it easier for disabled people to find creative ways to live more ordinary lives, away from institutions and in the community.   We’re off to a good start.  It makes no sense to say, “Well, some of you have had 10 years.  We tried.  It didn’t work.  Back to segregation” – unless inclusion’s not really as important as you claim. 

There’s been lots of talk of co-design in relation to the NDIS Review but it seems like if it happens at all it’ll be after determinative decisions have been made.

That’s not co-design, it’s window dressing!

The Review expresses government concern about the cost to the community of providing support for disabled people.  The same government shows little concern about the cost to the community of negative gearing and other tax concessions to the wealthy.  It’s not about funding.  It’s about political choices.

Where have the social and economic benefits of facilitating the inclusion of disabled people been considered?

What kind of community do we want? 

Social change is a long process

NDIS Review talks inclusion but offers the small minded solution of segregation and split supports.  At the same time, NSW and WA state governments continue to refuse to sign on to the National Construction Code, which requires new residential builds to offer a basic level of accessibility.  We also live in a time where it’s not uncommon for expectant mothers whose unborn children test positive for disability to be advised, even pushed by medical professions to abort the pregnancy and to be misinformed about what disability could mean.  The messages disabled people receive are often inconsistent with the idea of inclusion.

There’s another insidious excuse put forward by the Review to justify split supports for those who need them 24/7.  The report claims that

Reliance on 1:1 24/7 living supports can foster dependency, increase risks of exploitation, and reduce focus on capacity building and opportunities to increase social and economic participation.

Yes, badly offered supports can foster dependency.  Good supports can increase opportunity and independence.  It all depends what supports are offered. 

I once heard of a disabled woman whose friend was shocked to find the woman didn’t know how to operate a television remote control.  She was physically capable of doing it, but it turned out that she’d had a support worker who thought it was their job to do everything – including changing the channel.  The disabled woman had never been given the chance to do it herself, so she’d never learned how. 

That’s not support.  That’s infantalising. 

Unfortunately, disabled people are often subject to the low expectations of others.  It’s especially common if the disabled person doesn’t communicate verbally, has a speech impediment, or is intellectually disabled. 

I’m a wheelchair user who is able to speak for myself, and yet, if I go out with someone else, there are people who will assume that person is my “carer” and address them rather than me.  I soon put them straight. 

I’ve even been congratulated by an older man for using an elevator by myself.  Wow!  Amazing!  I was tempted to congratulate him for doing the same.

Support based in low expectations isn’t support – it’s baby-sitting.

Good support is not patronising.  It enables a person to do something they otherwise couldn’t.  There are times when I need assistance putting on shoes.  Getting dressed is fine.  It’s just shoes.  If I don’t get shoes on, then I can’t really go out.  (Apart from the fact that I’d look a bit weird, it can be dangerous to use a power wheelchair outside your home with bare feet.  If you bumped something at speed, it could really hurt.)  There have been times, when I’ve been travelling, that I’ve made sure someone is around who can give me a hand with that task.  Once my shoes are on, I can get on with everything else.

I know of a woman with intellectual disability who has support to improve her reading.  That’s skill building. It could open up all kinds of new opportunities for her.

Other people need supporters to help bridge the gap between them and other people.  If someone uses Auslan, they might need an interpreter.  If someone communicates verbally but is not easily understood, a supporter might initially provide some tips to help others understand and to feel comfortable rather than uneasy.  Once there is some familiarity, less support will be needed.

I have a friend who is blind.  She enjoys going to the gym.  Some of the equipment could be dangerous if she didn’t have someone to help her navigate her way around.  With support, she can keep fit as a member of her local gym.

The trouble is, Australia has a LONG tradition of labelling disabled people as incapable.  It can be hard to find supporters who offer genuine support, rather than baby-sitting.  It’s a story I hear again and again; disabled people being held back, not by our impairments, but by the low expectations of the people around us.  Assume I Can is a video that came out for World Down Syndrome Day making just that point – really well!

 When support that provides opportunity is available when we need it, disabled people can have, at least, ordinary lives, included in our community.  We can start to reach our potential.  Sometimes support enables us to have lives that are even better than ordinary.

In computing there’s a saying,” Garbage in, garbage out”.  

Poor support is the predictable result of decades of negative assumptions about the capability of disabled people.  If we want better outcomes for the people who receive support, a good place to start would be to improve the quality of the support they receive.

A three way split on 24/7 support could reduce the amount of support people receive.  It seems unlikely to have any positive impact on the quality.

The NDIS has contributed for about 10 years to building a more inclusive society in Australia – and only people who lived in the initial trial sites have had access to it even for that long.  It’s a blip compared to the generations Australians have spent keeping disabled people on the margins.

There will be changes as a result of this Review, but I hope the voices of disabled people are heeded before the decisions are made final.   We must continue to dismantle segregation and build an inclusive Australia.  The past is not a place worth going back to.

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