This year CASCAIDr’s theme for our annual Access to Justice fundraising walk is the gaps that are getting bigger and bigger in the world of adult social services. For those already aware of our work and why it matters – every donation is appreciated – click here to donate.
For the past three days, we’ve been highlighting serious ‘gaps’ in adult social care provision – the Assessment Gap, the Care Plan Gap and the Care Services Gap.
Today we’re looking at the Carer’s Support and Advocacy Gap.
1. On Census Day 2021 (21 March 2021) there were approximately 4.7 million unpaid carers in England, who provide continuing help and support to a relative, partner or friend. There were approximately 120,000 young carers aged between 5 and 17 years.
2. The Care Act gives carers a legal right to assessment of their own needs (regardless of how much care they provide) and suitable support to help them cope with being a carer. Councils supposedly play a central role in ensuring that carers receive advice and information.
3. The State of Caring 2022 report (Carers UK 2022) was based on a survey of around 8000 carers in England.
- 21% said their physical health was bad or very bad and 30% said their mental health was bad or very bad. 29% said they felt lonely often or always.
- 41% of carers hadn’t taken a break from their caring role in the last year.
- 36% said that not knowing what services were available was a barrier to accessing support.
- 25% of carers said they had undertaken a Carer’s Assessment.
- Only 13% said they were confident that they would have the practical support they need in the next 12 months.
Recent examples of CASCAIDr’s work include instances of carers being left to fill gaps in care, carers not being offered an assessment and assessments not leading to any support, despite eligibility.The duty in the Care Act to offer an assessment that includes assessing whether a carer is WILLING and ABLE to continue – see here: section10 (5) of The Care Act 2014 – but willingness is down to the individual, in legal terms…
Today’s focus is on the gap in family carers’ support services and advocacy and information about them.
When we say ‘the gap’, we mean how unusual it is to find the Care Act’s promise made good when it comes to family carers.
The rhetoric is that the structure of rights for people drawing on services is exactly the same for Carers – ie assessment, eligibility, services in response.
You don’t see that explicitly set out in carers’ advice and information organisations’ material very much.
Sometimes that’s because the contract they’re providing services to the council under will be discouraging that organisation from engaging with carers about assessment rights, or deterring them from finding carers formally eligible, let alone working from there through to actual support plan rights.
They’ll be seen as good carers’ hubs if they simply signpost people around the area and bring them all together to mutually self-help.
We’ve got nothing against that of course – it can be good to use assets and strengths in the community FIRST, but the point is that carers have GOT legal rights – and not unimportant ones.
The Care Act gives carers:
- Rights to assessment in their own right, which involves discussion of just how willing and able they are to keep on going, so that the council can give them something to keep the benefit of their dedicated and free input before it’s too late
- Rights to an eligibility decision – so that they’re not JUST someone who is caring but someone who is sustaining significant impact to their own wellbeing as a result of caring
- Rights to a support plan and a budget – for services, and not just a carer’s grant or a short break for their loved one.
Whilst carers have a good legal basis for expecting some logical rational link between the services and what they’re saving the council, the value of the package is actually supposed under the Care Act to focus on something else – supposedly, the impact that they’re sustaining from their care, whether or not it’s objectively, a LOT of care – or not so much, but the person is at the end of their tether.
In the real world a support budget is much more usually based on whatever it takes to stop the carer giving up – so it’s much more openly a negotiation. That is because caring is a choice, whereas being disabled or otherwise in need, is not. And that’s why there’s no case law on it. The council’s offer either works, or if it doesn’t, the challenge or complaint to what’s on offer is settled before it gets to court with more services for the person cared for, making the individual feel better, but at some cost for the ongoing relationship between the carer and the council.
Nobody in this country is obliged to provide care for the people to whom they’re related – after the age of 18. The fact that most of us want to or feel a moral obligation is irrelevant to that position, but it means that successive Health Secretaries can genuinely say we live in a country where the family is looked to first. They should tell the whole truth though and not hint that that’s an obligation, or that the mean looked to exclusively, believe me!!
It’s people’s informal carers – about 5 or 6 million of them – who save this country about 162 billion pounds a year, equivalent to a second NHS in England and Wales, it is estimated, on public services that would otherwise have to be funded by the Treasury.
- 5% of the population are providing more than 20 hours a week of care.
- Hundreds per day are leaving the workforce as the juggling becomes impossible
- Over 60% of unpaid carers are women. Women are more likely to become carers and to provide more hours of unpaid care than men and high intensity care at ages when they would expect to be in paid work.
The reason behind carers having some real leverage, however, is that the law under the Care Act makes it possible to contend as follows:
- if you make it clear that you regard your care as being put in not voluntarily in the full sense of the word, and that instead you’re doing it because it appears that the council has no other means to meet the need
- and if you have told the council firmly in writing that you are not in agreement to being seen as willing and able to supply services to the cared for person without remuneration
- and if you have demanded a revision process for the cared for person to no apparent effect
then you are entitled to a reasonable sum from the person in question, which the council would in turn need to fund, and that would be despite the cared for person never having been given formal permission to use the money out of the direct payment on a close relative in the same household.
We think that must be good to know and that the council is prevented from denying that it knows that this is the position the cared for person and carer have been left in, and in breach of statutory duty over the absence of a review and revision decision.
So far as Care Act Advocacy is concerned, family carers need to know that if their loved ones have got substantial difficulties engaging in the process, it can be better to step back from speaking up for them oneself, and demand instead that they get a free independent Care Act advocate.
That Advocate is supposed to know more about the Care Act than the carer is likely to know, and will be objectively less invested emotionally, and quite possibly less exhausted.
You will get a chance to tell the advocate what your concerns are, and crucially, an Advocate can put a Report in, which is not a complaint. That is much more effective than most people will achieve on their own.
There’s a gap in Advocacy too of course right now. But if you insist, it’s as much of a legal right for a person who needs it, as the rest of the rights in the Care Act.