Caroline Tomlinson was a driving force behind the InControl scheme. Andrew Mickel reports on her experience and her efforts to instil the self-directed support ethos in Australia
Caroline Tomlinson knows the problems of starting self-directed support from scratch. She helped get InControl off the ground five years ago, and her 19-year-old son Joe was the first person in the UK to receive an individual budget. So she was an obvious choice to push the concept in Australia, a country with a smaller social care sector than here and whose providers are more powerful than the UK’s.
Tomlinson spent May touring down under to share her experiences and persuade users and providers alike of the benefits. Drawing on her experience in the UK, she was clear that persuading people to start self-directed support means convincing them to do the work themselves, and not just wait on government to make a move.
Locals join forces
Valuing People [the white paper on learning disabilities] in 2001 said some great stuff, but two years on it wasn’t making a difference,” says Tomlinson. “InControl isn’t this poncey idea from government. It was created by a group of people saying, ‘let’s find a way of working this out’.”
Tomlinson, through her work with disability organisation Embrace Wigan and Leeds, joined forces with other interested locals including Wigan Council’s chief executive. What they created eventually became InControl, but to get the concept off the ground, the idea first needed to be tested. Caroline’s son Joe, who was disabled after contracting meningitis as a baby, was first in line.
“I said we’d be first up because, frankly, my life couldn’t have been any worse,” she says. “What I feared was what would happen in the future. I refused residential care [for Joe], but we were going into this one-way street where he would probably end up in it by 30. The council was spending thousands of pounds on him, but the bottom line was it was a waste of money.
“So we started thinking about things differently. It was initially difficult, painful, really hard work. But that early learning influenced the process from then on. It really helped develop what we’ve got today.”
Tomlinson was therefore well-placed to take lessons learned overseas. She originally planned to visit Australia’s National Disability Service conference in Melbourne, but before long she found herself on a full-blown national tour complete with TV appearances.
Not everyone there was keen at first. “Initially, some of the providers were a little hostile to the concept, from the hearsay of what they thought it was about. People at the conference in Melbourne at first thought it was quite controversial. But when I spoke, I got a standing ovation. It’s easier when you hear a real story rather than an abstract concept.”
What happens next in Australia has the potential to be broadly similar to experiences in the UK over the next few years. Both state and federal governments have been interested in the concepts during Tomlinson’s tour. Trials are now being set up in Adelaide and Victoria and a steering group is also being formed.
Now back in the UK, Tomlinson is working as the director of consumer support at InControl. She is developing a new web portal to bring information on different providers to users and allow users to handle their money online.
She is attacking this project with the same vigour that established InControl. “If people believe a market will just spring up, they’ll be disappointed. We’ve got to facilitate this,” she says. “I want an eBay sort of system to find out what other people think about a given service. It could also be a really good platform for providers to show their wares.”
The site is being trialled in six local authorities and is due to be rolled out fully next year.
She is also putting in place more permanent arrangements to keep Joe out of residential care. A mortgage has been arranged for him to have his own property, and he now runs a clothes recycling enterprise as a means of supporting himself in the future.
It is this kind of foresight that was valued at first in the UK and now internationally.There are more visitors from overseas coming to see how things are working. And despite the shortcomings here, Tomlinson says that seeing the limitations of support abroad proves we are on the right track.
“In Australia particularly there’s far less of a support mechanism. It’s really opened my eyes. I’ve come back knowing that we have a phenomenal welfare state in this country.”
This article is published in the 11 September edition of Community Care magazine under the headline An evangelist for self-directed care