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Extending your knowledge: The future of support

In this video, Jan Walmsley and Eric Emerson describe the introduction of personalised budgeting systems and the future of disability support.
MAN: FutureLearn. [THEME MUSIC] UNSW Australia. The future of disability support.
JAN WALMSLEY: Overall, I think things have improved significantly for people with intellectual disabilities since the middle of the 20th century. I think we may have seen a period in which we have very positive views, in which the possibilities of people realising themselves, of them having a better life, have been taken seriously. I think there was a big swing in the later 20th century from a very pessimistic view of people being born disabled and having no prospects, and it kind of being a fixed identity, to believing that actually if we invest time, energy, money, expertise, people can lead a better life. And I think we went a long way to achieving that in the late 20th century.
We didn’t achieve it, but we– but it got a lot better. At the moment I see some dangers in the way things are going. There are two areas, I think, where we need to be very cautious. One is that, in the name of promoting independence, citizenship, autonomy, we’re actually peeling back a lot of the support that was built up in the community since around 1970 in our countries, in Western countries. Supports like professional brokerage. Supports like places for people to go in the day. Supports like group homes.
They’re actually being dismantled in favour of a very individualised model of care– give people the budget, let them buy their own house, let them buy their own support, let them enjoy community facilities. Great, if you can achieve it, but there are many people for whom that’s going to be really difficult. That the community won’t welcome people with autism, who perhaps don’t behave in the way we expect. That they won’t include people who have frequent epileptic fits, and people don’t know how to respond to that. People out in the community at large do not know how to respond to it. So I think we’re seeing the danger that we’re actually throwing babies out with bath waters.
In the name of inclusion, in the name of ending segregation, ending specialist facilities, so that people can be part of the mainstream, the wider world. I think there are some significant dangers there for a lot of people for whom those have been essential supports.
ERIC EMERSON: The introduction of personalised, individual budgeting systems for disability services in the UK and in many states within the US, in a sense it’s been a mixed blessing. The evidence that we have does suggest that a significant number of people take the opportunities which individualised budgeting provides for them, in terms of managing the supports which they receive, they want, they desire, et cetera, and that overall, their quality of life is likely to improve as a result of that. And in a sense, I mean, why wouldn’t you have individualised budgeting? It’s the opposite– because the alternative is block treatment, one of the core aspects of institutionalisation. So it makes sense. It’s viable. It can be achieved.
It can be achieved within the kind of financial limits which most countries have to operate within, regarding the funding of Disability Services. But there are some downsides to it. And I think there are two downsides which I guess are particularly worrying. One downside is that what people want, quite often people can’t buy. Because you can provide funding to an individual to spend on whatever they think they need, what they want. But unless someone’s willing to provide that service, then there’s practically no point providing it, et cetera. And that has been a problem in most settings in which individualised budgeting has been introduced.
As it were, the market of people who are willing to provide that personalised individual support just isn’t out there. So there’s a real problem there, about how do you change the nature of service providers, so that they are capable of providing what people want to buy? And that’s been a real problem. We haven’t done that well in the UK. I hope Australia does a better job of it. The second downside to the introduction of individualised budgets is about the extent to which it can create inequality within groups of people with disabilities. People with intellectual disabilities, or people with disabilities associated with other impairments.
I guess one of the things that we’ve learned from the impact of social policies which are based on individual choice, is that some people are better equipped than others to take advantage of those things. So in the UK, we have policies around individual choice around schools your child goes to. Individual choices about the doctor you choose, et cetera, et cetera. And whenever you implement a social policy which gives greater control and choice to, as it were, members of the community, then what you generally find is that the dominant ethnic group, the more educated people within that dominant ethnic group, fare better. They take the opportunity that these policies offer.
And people who are less well equipped to grasp the opportunities which individualised budgeting or choice-based policies provide, often fall by the wayside. And one of the mistakes, one of the real mistakes that we made in the UK, is that we– when the policy was introduced, policymakers and government would not engage with that issue. As a result of which we’re seeing some inequalities. And particularly around elderly people, who are often much more anxious about the whole notion of individualised budgeting. Who are less likely to take it up, and therefore don’t benefit.
And what we failed to do was to think carefully about what can– what do we need to do to ensure that the inequalities which we should be expecting to occur with the introduction of a choice based model or choice based social policy, that those inequalities don’t occur. How can we provide safeguards so that people who are less well equipped to take advantage of these exciting new opportunities don’t get left by the wayside? And that’s something that we really need to think about very, very carefully. One of the issues that we’re currently struggling with in Europe of course is the results of the financial crisis and the fallout from that.
And what we see are two different impacts that’s having in relation to people with disabilities. The first is a retraction of Disability Services, particularly in relation to welfare benefits. Funding of Disability Services generally is problematic, and in different countries– in some countries extremely problematic. So we’re seeing significant reductions in local government budgets for providing disability services. And of course that is restricting the opportunities of people with disabilities to live the lives they want. It’s reduced the amount of money which is available to provide, whether it’s in block funding or individual budgets. So there’s a reduction in the level of service provision. There’s a reduction of the funding of services.
And the impact of that is that it is primarily affecting people with less severe disabilities. So in terms of intellectual disability, it’s people with mild or moderate intellectual disability who are really being hit by these cuts, because they’re being deemed no longer eligible for receiving support. So there’s a change in the, what in the UK we term eligibility criteria, for accessing disability services. It’s retracting, to focus more and more on the people who are generally regarded as in the greatest need, those people with most severe disabilities. The problem is that’s storing up problems for the future. And we know that there is just a fundamentally important logic about preventative interventions, and early interventions, as problems or issues develop.
And that’s the kind of work which is just disappearing.
The second issue that we’ve seen certainly in the UK, accompanying the global financial crisis, is to an extent a hardening of public attitudes and a hardening of media reporting around people with disabilities. So– and this is related to people with disabilities being seen as scroungers on the welfare state, an undeserving poor. And we’ve seen a very marked increase in media reporting in which disability is simply reported as a “problem.” Because people are pretending to be disabled in order to gain welfare benefits. And we’ve really seen a marked increase in that kind of media reporting, across virtually all media, at the same time as the global financial crisis.
And I guess that’s the kind of thing that– you know, hardening of public attitudes towards outsider groups is generally what you see in terms of recession.

In this step, we focus particularly on the future of support from the perspective of the Global North. Jan Walmsley and Eric Emerson discuss the move towards individualised funding and the benefits and drawbacks of this approach.

As Eric points out, individualised funding — or funding that is based on an individual’s needs for supports — makes sense from a disability rights perspective. In the past, disability funding has often been allocated by states in blocks to service providers — meaning that services make the decisions around what to spend the funding on, rather than people with disabilities themselves. With individualised funding, each eligible disabled person is allocated their own funds based on the supports they need to (ideally) flourish. In theory, the disabled person — or their ally — is then able to buy the supports they need with their individualised budget.

Experiences of implementing this model in the United Kingdom, United States and European Union have highlighted some drawbacks. As Jan suggests, an individualised approach to support can lead to a move away from collective approaches to support. In an accepting and inclusive world, collective support (such as group homes or community living programs for people with disabilities) might not be necessary. But most communities are not as embracing of difference, and without these programs some people with impairments could become increasingly isolated.

Another challenge for the individualised funding model is that it is dependent on a market being able to provide supports that disabled people want. But, as Eric points out, “what people want often they can’t buy.” For example, we saw this in Step 4.10 when Denise talked about the barriers for disabled people to access sex workers. Eric also says that an individualised model can compound disadvantage because some people are better equipped than others to make choices around support.

Finally, all models of state support are dependent on the state’s definition of disability. Eric explains how with the global financial crisis, eligibility criteria around disability have shifted so that fewer people have access to disability benefits.

Talking points

  • This discussion of individualised funding is more relevant in some countries than others. What is the situation in your local context?
  • What do you see as the potential benefits of individualised funding models?
  • Who do you think is most likely to miss out under an individualised model of funding?
  • What do you see as the future of support?

In the next step we look at issues of capacity and consent, particularly around sexuality and relationships.

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