Wednesday, March 27, 2013

Naming values, and the values of names

Being immersed in two projects funded by the NDIS Practical Design Fund, it has been harder than usual to keep up with the rapidly developing NDIS scene. However, last week's government announcement that the NDIS will be known as Disability Care Australia warrants a response, however late.

The announcement seems to have come as a surprise to many, including us, though we have been told the disability sector peak bodies were briefed on the process and given the opportunity to comment.

It is no surprise that some people might see the upside of a word like ‘care’. At its broadest level it carries meaning about compassion, about connection, and who doesn’t want some of that in their lives. The British media yesterday reported the UK government’s response to a public enquiry about health, concluding that the National Health Service needs more compassionate care. I can entirely see how a comparable sentiment may have brought the word ‘care’ to the list of possible names for the National Disability Insurance Scheme.

But this is a word that has layers of meaning, making it a problematic choice for the scheme’s name. And I encourage people not to make the mistake of assuming that name selection is a minor issue, a sideshow that has little consequence given the other important considerations about the scheme’s design and implementation. The name is a brand, intended to convey the values of the scheme. As such it is the first and most telling signal of the scheme’s culture. More on this later.

The difficulty of using the word care is well summed up in the following excerpt from Craig Wallace’s opinion piece for the ABC's Ramp Up:

“Instead of choosing a name that speaks to a new world, of rights, choice, inclusion and control, with people at the centre, we have a moniker that puts people with disability to one side - as people to be cared for. It spells more of the same.”

Hitting a similar vein, the National Council on Intellectual Disability posed the question, “Where is the language of the UN Convention on the Rights of Persons with Disabilities?”

Further, one Facebook contributor to the debate suggested the only way the use of the word care could be less unacceptable would be if it were applied to every Commonwealth government department, for example the Department of Infrastructure and Transport Care, the Department of Prime Minister and Cabinet Care, the Department of Foreign Affairs and Trade Care etc.

In its defence, the Commonwealth government might argue the name Disability Care Australia was a good fit with existing public funding brands like Medicare. Understandable, then, that the government might wish to build a brand stable. However, there remains the question on whether it is the right name for its target beneficiaries – people within the disability community.

In this regard, and in addition to consulting with disability peak bodies, we understand the government commissioned a series of focus groups comprising people living with disability and their families from a range of communities around Australia, and that there was good support for the name Disability Care Australia.

If this was the clincher (and it would have to, because the ‘brand stable’ argument isn’t enough by itself to justify the adoption of this tricky word ‘care’), we might seek to deepen our understanding as to the nature of the focus group participants. One might reasonably assume the focus group membership was derived using sampling techniques typical of market research companies, so that the focus groups bring a range of perspectives typical of Australia's disability community.

If true, fair enough, but focus groups are typically small so there are limits on what a focus group can tell you about trends across a broader population, especially the complex, multi-layered population called the disability community. But let’s just stay a little longer with the focus group issue.

I don’t know the focus group research agency’s identity so I am drawn to this next question: what did that agency truly understand about disability community demographics. It may have known enough to look for focus group participants with, among other things, perspectives covering person and family, metropolitan, regional and rural Australia, and the differing causes or types of disability. But this isn’t enough. However small or large the consultation, a demographic we cannot afford to overlook is the range of experiences that different people have in accessing support. What I mean by this is there are people within the disability community who have had differing types of experience with the disability service system. This includes people who have been ‘done to’ by the system, rendered passive service recipients, neglected or worse, and where the notion of care has become synonymous with an absence of control and choice, of being mis-served by paid carers who don’t.

It is not unusual to find that this particular demographic of painful service experience comprises people with greater degrees of disability and vulnerability, with less voice heard. These are the people who arguably have the greatest moral stake in the new system, because they are often the most distant from good life chances. These are the people we might hope can make the greatest advances in their life chances as a result of the changes.

If this is true, and I believe it to be, then because of the damage done in its name to some of those with the greatest stake in the success of the new system, the word ‘care’ should not have made the long-list of naming options, let alone the focus group short-list, let along being anointed as the chosen one.

The NDIS reflects a set of values the government wishes to advance and uphold; values around control, choice, participation in community life and participation in the economy. For values to truly come alive in any field of human endeavour, every decision and every action needs to be coherent and consistent with those values. Otherwise, the values will die the death of a thousand cuts, where a sequence of misaligned decisions and actions, however well-intentioned, serve to wound the intended values-based culture.

Ultimately, the success of the NDIS hinges on its capacity to live out the stated values, to express a values-based culture that advances people’s chances of a good life. Every decision and action taken will either contribute to, or undermine, the emergence of that values-based culture. Choosing a new name for the scheme is one such decision. Because of the complex and diverse perceptions of the word ‘care’, including for some people a profound negative emotional weight, it doesn’t present itself as an obvious choice to encompass the scheme and its values, and I don’t think the prospects are good for its rehabilitation.

I remain hopeful that the government – indeed the various governments including bipartisan support – truly wish to see a paradigm shift in the way people living with disability are supported, in line with our nation’s commitment to the UN Convention and the values underpinning it. If so, choosing a name for the NDIS warrants further reflection, in the hope that a different name emerges that better captures the values we want the new system to live by.


  1. I have to agree the word care has no place in association with the NDIS. I too remain hopeful that a different name emerges. It is frustrating from a teaching perspective that we talk and discuss extensively with student of all human service professions about language...then they go out into the world and come across DisabilityCare and we wonder why they lose sight and perspective on their role as human service professions is to empower and support not wonder they are confused.... then we are asked what are we teaching...well it certainly isnt CARE!!
    Caroline Ellison Flinders University Disabilty and Community Inclusion.

  2. Very much a lost opportunity. Harks back to all the old ways: care in the community, nursing care; domicillary care; 24 hour care - all with the same connotations of 'patronage' rather than rights.

  3. Thanks , a good discursive on the topic.
    I would like to see the use of 'disability' dropped from the title.
    After all everyone has different abilities, and the focus on disability in the title is really what gets me.
    I like the name of the nsw health department 'Enable', the umbrella department for managing PADP (Provisions of appliances for disabled people, or something like that) continence supplies etc.
    Enable gives a sense of empowerment don't you think? If the word disability is used in the title it is constantly reminding the service user that they have a disability, there are limitations, one cannot perhaps achieve what one wants because of disability. So I don't like the use of either term! Disability or care.

  4. [posted on JFA Purple Orange Facebook page]
    Thanks for the considered discussion in your newsletter about the use of the word "care" in the name which has been selected for the NDIS. I didn't know this had been arrived at so it was good to read your critique at the same time as finding out. I agree it does tend to place people with a disability in a passive position. I would have thought "access" or "inclusion" or perhaps "freedom" would have been better choices.

  5. This piece also relates to the term ‘carer’ or ‘young carer’ for family members. Why can we not be families, mums, dads, brothers, sisters?
    The term ‘young carer’, in particular, was originally coined to refer to young people who provided support to a parent with a disability or chronic illness. Over recent times it has been increasingly used to refer to siblings of children with a disability. This is regrettable on a number of levels.
    What 12 year old boy with a disability wants his 10 year old sister to be known as his ‘carer’? Instead we should be working from the premise that people with a disability and their whole FAMILY need support, whatever role they play. Using the term, ‘carers’, distances families which include a disability from the general community. It certainly doesn’t add to the dignity of people with a disability.
    We need a model that recognises that the whole family needs support, including siblings. We know that siblings may face a number of challenges and, without support, can develop their own mental health problems, regardless of any carer role they may play. If we follow a ‘carer’ model many siblings will be overlooked for support as they are not providing ‘care’ as such. Also, the sibling relationship will be the longest of any and so we need to nurture that relationship from a young age, not set up a power differential of ‘carer’ and ‘cared for’. We know that some siblings, as they age, move away from the family, and one of the possible reasons for this is that the expectation of becoming a ‘carer’ rather than a support person/sibling/friend can be too daunting.
    I am surprised that disability advocates have not had more input into the policy around family members, the roles they play, and how those roles are labelled.
    Kate Strohm, Director Siblings Australia

  6. This post on the name of the NDIS, is excellent and well worth reading by everyone. Good stuff JFA - goes straight to the poolroom!