Cash care system should be paying off

It’s been a bad week for the caring reputation of the state.

 

Lesley Riddoch:

Published on Monday 30 April 2012 00:00

 

A scheme exists for disabled, old or longterm sick to order their own care but many councils make it hard to use, writes Lesley Riddoch

It’s been a bad week for the caring reputation of the state.

A Sunday paper carried the story of a Scottish multiple sclerosis sufferer bedridden for two years after being discharged from hospital with bed sores. The 56-year-old Gourock woman was given a specially adapted bed (crammed into her own dining room) but no cure, compensation, physiotherapy or apparent caring support from anyone but her 80-year-old mother.

Last Monday, BBC’s Panorama showed an elderly London care home resident with dementia being slapped, man-handled and verbally abused on film after her daughter hid a secret camera. The abuse – in a care home passed as “excellent” by the government regulator – has led to five care workers being sacked.

It’s not clear if these cases are utterly exceptional or the tip of an uncaring iceberg. One thing’s for sure, though. These terrible, confidence-sapping failures might not have occurred if the vulnerable women and their families had been in control of their own care.

And yet just such a system has been available in the UK since 1996.

Direct Payments were meant to revolutionise life for people with learning, mental health or physical disabilities assessed as needing care. They could opt to receive the budget themselves and spend it on a personal assistant, charitable organisations like Crossroads, council services – or a mixture. Parents could administer the budget for children under 16 and guardians or attorneys could act for people with dementia or mental health problems.

The Direct Payments system was even described by the Cabinet Office strategy unit as “the most successful public policy in the area of social care”.

And yet in Scotland particularly, it seems very few people have opted to use it. In Dundee, for example, only 43 out of 4,300 people eligible for care opt for direct payments. Scotland-wide figures are unavailable. Indeed a common response amongst carers, care users and professionals is still, “Direct what?”

Why doesn’t this sensible-sounding system work?

Care provision will probably not sway a single vote in this week’s council elections. Direct Payments weren’t included in the SNP’s Carers Manifesto published this weekend despite current Scottish Government-led reform – the story was deemed too complicated.

And yet, care provision will challenge Scotland’s new councils more than any other single issue. The care budget is set to double in 15 years as our population ages. A third of us will need care at some time; almost all prefer to receive care in our own home and that option is also up to ten times cheaper than institutional care.

If local and central government cannot work together to personalise care, cases of institutional mismanagement will continue and the burgeoning care budget will keep rising.

So why are direct payments not the norm in Scotland?

I chaired an election hustings event at the Dundee Carers Centre two weeks ago and one problem dominated – direct payments cannot be used to employ resident relatives.

In 1996, fears of hard-to-detect abuse by family members, strained family relations and poor caring choices meant relatives were barred from receiving direct payment cash.

Jack McConnell’s government relaxed that absolute ban in 2003 when it became obvious perfectly capable partners – often living in poverty to provide round-the-clock care – were being excluded. The rules were changed to let non-resident relatives be paid in “exceptional” circumstances to be determined by each council. Result – a postcode lottery.

The general bar on employing relatives together with fears about paperwork and responsibility as an employer, professional disapproval and lack of information have combined to deter tens of thousands of disabled Scots from using direct payments.

In Dundee for example, where 4,300 people have care plans and 43 receive direct payments, only three people have been allowed to employ a relative. This is not a system that’s working.

And yet when it does, direct payments can be transformational.

Moria Ogilvie has MS, has used a wheelchair for seven years and is entitled to 35 hours care per week. She’s a former teacher and a feisty, outspoken lady. But Moira’s special in another way. She’s the only Dundonian employing her partner. Dave used to run a garage in Fife, but gave that up, moved to Dundee and became Moira’s paid carer five years ago. He spends an estimated 70 hours with Moira helping with bathing, washing, dressing, using the loo, driving her to the park, cinema, friends or the shops and general mobility.

“Sometimes when she’s in pain at night I change her position every half hour, move her legs, reposition pillows to help her sleep.” It’s hard to see how a non-resident carer could do a better job – and since Dave also had his own flat and was therefore technically non-resident Moira’s sympathetic care manager approved the arrangement. Moira’s pension means she contributes about £58 a week for her care but Dave then receives £200 per week after tax.

Of course, not every partner makes the ideal carer. The main complaint at the Dundee meeting though, was that applications to pay relatives were being dismissed out of hand.

The young mother of an autistic son (who works part-time and cares for a relative with Alzheimer’s) wanted to use her son’s direct payments to employ her own mother. The lad doesn’t relate well to strangers but is fine with his granny. The bid was refused and her solicitor-backed appeal also failed. No reason was given.

John Mitchell has a spinal injury, has used a wheelchair for ten years and uses direct payments to employ an agency and his partner. That aspect of his care plan is currently being “re-assessed”.

“My partner was on holiday for three weeks and Crossroads Care came in. They were very good but they put you to bed at 9pm and sometimes don’t get you up till 11:30am at weekends. I couldn’t cope with that 24/7.”

Some SNP councils (like Dundee) and the SNP-led Scottish Government seem to be heading in opposite directions.

The Self Directed Support (Scotland) Bill, backed in principle by Labour, will make it easier for care users to employ relatives in “not exceptional” circumstances.

Direct payments will also become the highly publicised norm, not the hushed-up exception. Personalisation will undoubtedly bring difficulties. But the sooner all care professionals embrace this new direction of travel, the better.

http://www.scotsman.com/news/lesley-riddoch-cash-care-system-should-be-paying-off-1-2264598