Meet Pat. She's 49 and lives somewhere in the East of England. Her son, Jonny, was born 26 years ago with profound disabilities. As an adult, he needs 24 hour care. Jonny lives in a residential care home run by a massive private firm which bought out the smaller operator that opened in a few years ago.
When I spoke to Pat today, she was worried that Jonny might die in care. Now dig this. Jonny doesn't have a fatal illness. Pat was talking about neglect. Not feeding him. Not giving him enough to drink. Not keeping an eye on him at night. Not giving him prescription drugs. Just not really being that arsed, to be honest. This wasn't hysterical parent stuff. I have known Pat for nearly decade and she's one of the steadiest people I know. If she's worried about Jonny, something is proper-wrong.
On Monday, Jonny goes back into the home after ten days with Pat - and a stay in hospital - to help him gain weight. Pat is terrified. I asked her why she doesn't pull Jonny out and she tells me she feels powerless. `What about personal budgets?' I ask. Pat asked six months ago and was refused because Jonny'sneeds were `well provided for'. Now, even following a meeting with the top brass in the council, Pat is being told that the county council isn't going to allow any new personal budgets till 2009 in order to allow them time to get their systems in order.
So she's stuck.
I give Pat some advice on how to negotiate with the council. I remind her she's not powerless. Her story ("I Thought My Poor Disabled Son Was Going to Die in Care") would be an editors dream and she needs, in a very understated way, to let the council know that if they don't give her a personal budget today, she'll take them on in public to get one. Not only will the council have to accede, they'll have all sorts of nasty stuff coming out about their own shambles of an organisation and the incompetence of their own own commissioned provision. Which, by a supreme and devastating irony, is `highly rated' by the Care Inspectors.
Pat worries about a backlash on her, something which she says has already started (organisations nearly always find ways to label complainents mad or bad). I tell her not to worry. All the media will be interested in will be the David versus Goliath of her highly photogenic disabled son(and her not-bad looking mother) versus Nasty Care Inc.
Trying to be positive, I ask her about the time, say in 2009, when Pat gets the personal budget she's been promised. Will she set up a personal package for Jonny with her own mortgaged flat, personally staff and all the bells and whistles? No. Because that means Pat herself would be taking total personal responsibility for three employees. The five o' clock on a Friday problem (when the weekend person calls sick) would become her problem to solve. So too would the care worker who went on maternity or sick - with nothing in the personal budget to pay them. No, Pat says, she'd look for another provider. I am surprised but she reminds me that she's a single working parent with not a lot of time on her hands to fix the Friday 5 O clock problem.
Pat's situation asks big questions about a lot of things: What the hell is happening in registered care homes? Why are councils not allowing personal budgets in 2008? But it also asks questions of the whole idea of personal budgets as a liberation package. Pat is a qualified professional. Middle class, well educated - you get the picture. If Pat doesn't feel she can handle all the responsibility of a personal budget - even when she's worried about her son effectively being killed by her care provider - then who the hell is going to be taking them? Pat would rather just find a care provider who is a lot less likely to kill her son than take on the package herself. And who could blame her?
What we perhaps need instead are organisations to which Pat can take her budget and say `I want complete transparency on this, complete control of the dials in terms of changing what's spent and how, a big say in who works with my son and how - but not the full-on responsibility of being an employer'.
Whoever can put these sorts of packages together - offering a step-change in choice and control for individuals and families, while taking away the worrying liabilities associated with running a small business will, I think do very well in the new world. Existing care providers could do this, but can they change their spots from do-ers to to do-ers with? Can their business models bend enough to allow these kinds of flexibilities and involvement? I think not. Which leaves the field open.
Pat and Jonny's story is here because it brings together a panopoly of issues in our social care system in 2008. The care homes that are killing people. The councils that cannot make the leap to personal budgets. The new systems and ideas for a new world of self-directed support which are a turn-off even to the most desperate families. I didn't hear desperation today but I heard powerlessness and a real fear of what the future holds.
It made me shudder.