Wigan, UK
It may not surprise you to learn that it has rained somewhat during the time I've been in the UK. In fact, since I got here on the 18th november, not one day has passed when there hasn't been rain. This is something of a novelty given that I live in South Australia, which is generally drier than a wafer. However, the novelty soon wears off once you're driving in the stuff, upon British roads that are jammed with squabbling cars whose harrassed occupants are trying to get to some other place. Often a shopping place. I recall listening on the car radio one evening how someone had called in because they were caught on the freeway for the last hour in late night shopping traffic, and with no prospect of getting out of said traffic for another hour. Their call was to request how best to deal with a full bladder, given there's no dunny in the car. The response didn't provide relief.
There are shopping alternatives of course, such as online shopping, where you can browse a multitude of offerings, and have stuff delivered anywhere in the world, and all from the comfort of your own home (inclusive of dunny). This online world has now extended to the purchases made by people living with disability who have Individualised Funding (aka Individualised Budget, Personal Budget, and Self-Directed Support). Through a collaboration between In Control and a specialist online services company, people with a personal budget can do their shopping online, at Shop4Support (www.shop4support.com).
Though still in its early days, this engaging site carries merchant 'stores' covering a growing range of offerings, including planning support, personal support, overnight support, financial services, advocacy, legal services and plumbing supplies. Just like Ebay or Amazon, shoppers can move through the site selecting items and then paying at the checkout. But there is other stuff there too. A person can upload their personal budget details to the website to help keep track of their spending, with the money moving directly from the public funder's account (the Local Authority, a bit like an australian state or territory) to the merchant's account. This gives the person full control but without the hassle of managing the transaction. For the local authority, this arrangement provides what appears to be a cost-effective approach to managing the transactions and accountabilities associated with Individualised Funding.
The other thing I like is that people can upload their own stories about how things are going, what is working well and what could be different. This creates the opportunity for an online community to share stories about how people are using Individualised Funding to move towards a good life.
The merchant stores carry have full price transparency, together with other information about the organisation's values and approach. This gives the shopper a good opportunity to compare different support agency offerings. I am also told that, just like some other online shopping sites, shoppers at Shop4Support can also apply a rating to different agencies. This means that there is consumer-driven real-time evaluation of support agencies and other merchants.
Lest we forget that you don't get yourself a rich life simply by buying stuff (where people run the risk of living a lifestyle characterised by people who are paid to be there) the site is also developing community pages so that visitors can explore local community facilities and services, to find out how best to access opportunities that are available to all citizens locally. I can also imagine the emergence of other offerings, such as Circles networks, Microboard support, and opportunities for people and families to link with other people in similar situations.
I haven't fully navigated the website because I don't have a personal budget and so can't access the full functionality. And much of what I've described in this blog posting is based on what the people who run Shop4Support have told me. So I can't vouch for the accuracy. But the point here is that the site exists, and demonstrates that it is possible for there to be Individualised Funding arrangements where: 1) the person is in the driving seat without being swamped by complexity or bureacracy; 2) the person is in the valued role of cashed-up shopper in a marketplace where s/he can choose those agencies and services that have the best match with what s/he wants; and 3) the person can access a number of opportunities for genuine fellowship in the local community.
Naturally there will be significant costs associated with setting up something comparable in Australia. I can't help but imagine that in the meantime there must be a lower-tech way of achieving this degree of connectivity.
The perception of many people with disability is that the louder change is promised the more things stay the same. It’s the subtle policy shifts that really mean something and people watch out for them. Accordingly to this view, there is a converse relationship between the size of the announcement and the reality of change on the ground. A really well funded media release alerts anyone who has a vested career interest contrary to the substance of the announcement, to really energise their networks (even at a less conscience level) and ensure quarantine / customs checkpoints are in place at every strategic point of the announcement ‘road map’. Most employees in human services still think of disability as primarily a crisis/welfare issue and this is not likely to change while it is in their interests to do so. Also not while the (largely unspoken) normative expectation of government policy makers is that community perception of disability will never change it’s view of people with disability as lesser and separate to themselves. Encapsulated in the phrase “That’s why we pay taxes isn’t it”. As is articulated in social inclusion theory (from many jurisdictions around the world), social barriers to participation, not physical, are the most pervasive.
ReplyDeleteThe terrific thing about individualised funding (that appears not be often spoken about) is that such debates can largely be consigned to the back seat. Practical ongoing negotiation need only occur at the funding stage of a self management model and the tedious task of seeking extended stakeholder approval can be largely bypassed. It is also not the responsibility of people with disability and their families (as a marginalised community) to right the wrongs of social discourse or take up political of other causes that are not of their immediate interest. They can, but that’s their choice. Too often in such debates, territory is carved out by well known spokespersons and the divisions appear to be manufactured to appeal superficially to a receptive audience based on historic, political or on other fault lines such as disability type