Citizen Innovators: A New Model of Disability Services?
Democracy requires active participation by all citizens, including those with disabilities and other health conditions that have historically excluded them from full participation. Recent initiatives in disability services have pointed the way for people with impairments to play a role as innovators and pioneers of new approaches to public services.
The newly-launched National Disability Insurance Scheme (NDIS) in Australia was introduced because of a recognition that existing disability services simply were not of adequate range and quality. The Productivity Commission report on NDIS concluded: ‘the current disability support system is underfunded, unfair, fragmented, and inefficient. It gives people with a disability little choice, no certainty of access to appropriate supports and little scope to participate in the community’ (p.3). Whilst there were examples of good practice and innovative approaches in various states – Local Area Coordination in Western Australia is an internationally well-known example – there had been insufficient commitment at the federal level to assert the entitlement of people with disabilities to a level of funding consistent with equal citizenship. The design of NDIS – an insurance model in which funding is allocated to the individual to be spent on a way agreed in dialogue with local planners – creates scope for people with disabilities to be creative in how their monies are spent.
As NDIS develops in the trial regions, it is as yet unclear how much creativity is being allowed about how people spend their budgets. Individualised cash-for-care schemes in other countries demonstrate that levels of individual control can vary between getting a choice from a menu of existing providers (as is common in Norway), or being encouraged to think innovatively about new ways to get support (as in parts of the UK). Direct payments in the UK have been available to people with disabilities for nearly twenty years. In that time, many people with disabilities and their families have used this individualised budget to make innovative spending choices.
Here are three examples of small-scale innovation from the UK (not all of them successful):
1. I interviewed a mother of a young man with multiple and profound disabilities when researching a book about personalisation reforms. She told me about how a direct payment allowed her to make more appropriate and cheaper choices for looking after her son when she and her husband wanted a night out: ‘people were saying the respite unit only takes people in on a Friday and you can only come out on a Monday. All I really want is a baby sitter for Saturday night.’ By thinking creatively about how to get the best out of the direct payment she was able to purchase support for the Saturday night at a fraction of the cost of weekend respite.
2. In a recent project looking at micro-enterprises in social care, we came across a number of very small service provider organisations which had been set up by people with disabilities or with caring responsibilities. They had recognised that individualised funding created a market for people offering something different from the usual day centre-type activities. User-led micro enterprises provide a range of opportunities, including dance classes, football, and new ways to get work experience – such as through pedalling a smoothie bike at a musical festival.
3. A third example of how individualised funding can stimulate innovation comes from a group of people in a shared housing facility who pooled some of their direct payments to purchase gym equipment (see pp.75-80). This is a less positive example. The gym equipment lay gathering dust for months, because of uncertainty between the housing association, the care provider and the residents about who would bear the risk if there was an accident, and whether it should be available to everyone in the community or just the people living there. This is a reminder that innovation creates new dilemmas and requires new ways to think about risk and responsibility.
It is not clear yet whether NDIS will allow sufficient freedom over spending choices to stimulate innovation or whether existing service models will continue to prevail. If it is the latter, then NDIS will move closer to the fixed menu model, which allows people to get a service, but not necessarily to get a life.
The research was funded by the Economic and Social Research Council in the UK.
Image: Anjan Chatterjee/Flickr