Can Individualising Care Services Help Renew Democracy?
The argument that many advanced liberal democracies are currently experiencing somewhat of a crisis in terms of citizen engagement is well rehearsed. In many jurisdictions interest and participation in political processes is significantly reduced and recipients of public services have expressed dissatisfaction in their quality and availability. While this is, of course, an issue of immense frustration for many of us, for those who are particularly disadvantaged or live with a chronic disability it can have a profound impact on the lives and livelihood of individuals and families.
Governments of countries such as Australia and the United Kingdom have come to the conclusion that a particular area of public services – those provided to people with disabilities – are profoundly broken and in need of radical change. In both these countries there are too many examples of poor and sometimes unsafe services, which are often out of step with the wants and needs of disabled people. Within this context it has been argued that greater citizen engagement should lead to better outcomes for people with disabilities.
Over the past twenty years we have seen the emergence of individual funding schemes in disability services as a mechanism through which individuals will be more engaged in their care services. The idea is that if budgets are devolved to individuals then they can better determine what services are most appropriate, producing better outcomes and possibly efficiencies through the eradication of waste.
In the UK, direct payments were introduced at the end of the last century to provide individuals with a cash payment in lieu of disability services. Since this time there has been a gradual expansion of this scheme to personal budgets for all those in receipt of care services and experiments with joint health and social care budgets in some specific service areas.
In Australia several states have had individual funding schemes for some time, such as Victoria’s Individual Support Packages. The introduction of the National Disability Insurance Scheme is an attempt to expand these state-based developments so that all people with disabilities who meet the appropriate eligibility requirements will have the opportunity to have a greater say in their care package. This scheme has an individual funding component, which will allow individuals to direct their own care, determining how their overall care budget will be allocated.
Interest in these schemes comes from both sides of the political divide: those on the left see this as giving choice and control to citizens and on the right this is the ultimate expression of market-driven economics at the heart of welfare services. The attractiveness of this concept ultimately may prove to be its major challenge. In practice these kinds of schemes cannot be all things to all people and concepts of citizen rights and market-driven consumer systems are not necessarily good bedfellows.
Which version of this system is implemented will be important in terms of whether this form of engagement leads to greater citizen rights for people with disabilities. Where these schemes become primarily operated through vouchers with individuals choosing from a menu of possible services it may prove difficult to significantly alter care packages and achieve the kinds of lofty aspirations associated with a fundamental change to citizen rights. Much of the experience from the UK suggests that innovation is only really achieved where individuals with disabilities are able to make real changes to their patterns of care and use their personalized budgets in creative ways.
Receiving cash in lieu of care does not automatically achieve this if there are either very few providers of care services, or where what is provided is not consistent with what individuals might want to access. In talking about the benefits of these budgets often the analogy of a supermarket is drawn, suggesting that individuals will be free to fill their (care) basket with services that they want – rather than being allocated particular services or products by a professional. Whilst in some ways this is a helpful analogy in illustrating the self-directed nature of care under such systems, I am sure we have all been in the situation where we want to buy a particular product and find that the selection on offer comprises items that are too expensive, too basic, contain E numbers that you don't eat, too much salt, is provided by a brand you are ethically opposed to, or you simply don't like the packaging.
It might be possible to go to a different supermarket, but not all of us will have the time, means or transportation to take us to a different outlet. For those who live in metro areas there may be multiple supermarkets, but in rural and remote areas the choices may be far more constrained. Even if you did manage to go to a different supermarket, we know that these are becoming more similar and there is little way of difference in the top two.
In this context, the role of the supermarket purchaser is crucial as they are the ones who determine what goes on the shelves and is therefore available for purchase. Larger supermarkets may be able to achieve better prices for products, although sometimes by driving a very hard bargain with producers. In the context of care services, typically the major costs are in terms of human capital, meaning that efficiencies may be achieved but this will often come at the cost of terms and working conditions of care staff.
This analogy is used to demonstrate that by giving individuals budgets this may not necessarily produce greater engagement of individuals in their care services and enhance their citizen rights. Designating consumer roles can be a poor proxy for greater citizen rights for a whole host of reasons. This mechanism, for example, does not necessarily address issues of social inclusion, employment or other such issues. In individualizing services there is the potential risk that this undermines the collective nature of public services, potentially undermining opportunities for greater citizen rights.
The NDIS is a bold and welcome policy initiative and if it realizes its full potential will significantly alter the quality of disability care for generations to come. However, this path will not be easy and these benefits will not necessarily automatically accrue without some significant thought to, among other things, how this system will be supported, how individuals with disabilities will be supported to exercise choice and voice, social inclusion can be supported and, how care markets are ‘managed’.
Feature image: Special Olympics Australia/Flickr