Hidden carers and how the Law Commission’s proposals may help

Proposals to reform assessments could help social workers shine a light on the needs of hidden carers. Vern Pitt reports

Carers are not what they used to be. Or rather, not what the current legislative framework supposes them to be.

Currently, carers must be giving “regular and substantial care” to qualify for help from a local authority. They must also request an assessment of their needs if they are to receive one, although social workers have a duty to inform the carer of their right to request one. Consequently, many carers are hidden from the system. This means they may be missing out on support that could improve their lives and avoid costly interventions later.

“It’s no longer the case, if it ever was, that there is one carer and one cared-for person,” says Moira Fraser, head of policy at the Princess Royal Trust for Carers. “We have a lot of people with learning disabilities who have been cared for their whole life by a parent and now their parent is getting old and frail and it is now the son or daughter caring for their parents,” says Fraser. “The complexity of people’s lives needs to be addressed.”

That’s why the Law Commission recommended sweeping changes to carers’ rights in its proposals to overhaul adult care law, published last month. It said carers would no longer need to request an assessment and instead should be offered one as standard, though they would retain the right to request one when it is not offered.

Carers would only need to appear to have needs that could be met by social care services to qualify for an assessment.

Campaigners say these changes could provide a real step forward for carers’ rights and would place them on a near equal footing to those for whom they cared.

Signpost to support

Regardless of whether carers qualify for interventions or not, an assessment can provide a signpost to the support they need and inform them of their entitlements. If nothing else, the opportunity to discuss their needs can open carers’ minds to options they may have thought impossible.

Should the proposals go ahead, the biggest impact on social workers would be an increase in the variety of carers they come into contact with. The removal of the regular and substantial criterion would mark a shift from an hours of care-based system of assessing carers. It means tasks that are not easily quantified in this way, such as support from a distance, intermittent support, often required by those with mental health problems, and emotional support, which is often impossible to quantify in time, will all now be brought within the system.

With new types of carers come new support needs. “If you’re in poor health yourself, caring at a distance could be enough to ruin your health,” says Emily Holzhausen, director of policy at Carers UK.

Naturally, many carers worry about the person they care for when they are not there and this stress can take its toll, she says, but there are services that can help. “There are very effective low-cost interventions such as emergency schemes [which support networks of carers who can step-in in an emergency] or telecare. The amount of people who say it gives them peace of mind and they know what happens if something goes wrong is massive.”

The prospects for the Law Commission’s proposals being included in government legislation on care reform, due next year, appear favourable. The UK government’s update to its predecessor’s carers strategy, published last November, recognised the need to reform assessments, while it has also provided over £1m in funding for projects to identify carers earlier and provide low-level interventions to support them.

Perhaps the biggest barrier to change is cost. The Welsh government has already expressed concern that the proposals could lead to an influx of carers requiring social workers’ time. But Holzhausen is not convinced: “People don’t flock to social services to have assessments. And in some cases that early investment will be preventing problems further down the line.”

Shifting definitions

Graeme Betts, carers network chair at the Association of Directors of Adult Social Services, adds: “Just shifting the definition doesn’t guarantee there will be more carers. Often they don’t want a service or don’t come to social services because they think they’re coping OK.”

Another mitigating factor in terms of the impact on social workers’ time would be the introduction of a proportionate assessment system, as proposed by the Law Commission. This would mean that social workers would not be required to fill out reams of paperwork for lower-risk cases. In essence this is what many adult care departments do already, argues Holzhausen.

To the extent that it involves a change, Betts says that proportionate assessments would put the responsibility for decisions back in the hands of social workers and is an expression of traditional social work values.

Fraser says the plans could also streamline the process. She says some councils conduct pre-assessments of carers just to decide if they are eligible for an assessment, which work would be unnecessary under the Law Commission’s proposals.

A broader definition of caring, as proposed, would benefit carers, empower social workers and possibly prove cost-neutral for local authorities. All that remains is for ministers to legislate and make it happen.

‘I didn’t know where to turn for help’

“I feel like I’m begging to be let into the system,” says Lisa Kilcairn, who cares for her mother.

Aged 33, Kilcairn has been a carer for almost her whole life, but she has not had a carer’s assessment. She feels she has been shut out of the system because she does not live with her mother and has a job.

Her mother has anxiety disorder with psychotic features and recently suffered a burst bowel, which has led to her needing to use a colostomy bag. A traumatic change for anyone, it is taking a toll on her mother’s mental health, says Kilcairn. In turn, the situation is putting a strain on Kilcairn. “When I was thrown into it back in February I didn’t know where to turn for help. Not only was I dealing with the trauma of what had happened, but also where to go to find things out for her.”

She became aware that she might be eligible for respite care and contracted her council. She found it difficult to gain an assessment. She was visited by a member of staff but it hasn’t resulted in any concrete plans.

“A carers’ assessment would help me be clearer on what I’m entitled to and what things I can access,” she says.

Instead, much of her knowledge is based on her own research. For example, she discovered for herself that her mother is not eligible for disability living allowance.

“I think access should be wider. It seems unfair that some people have the door shut straight away,” she says.

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Special report on Law Commission proposals

Princess Royal Trust for Carers response to the Law Commission proposals