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The forgotten families of the social care crisis

The forgotten families of the social care crisis

The reforms that Sajid Javid must unveil before the end of the year do not only affect the elderly. Too often, this debate neglects those with learning disabilities and autism – and their loved ones, who bear the burden of such indifference

In June 2011, Claire Garrod sat down to watch an episode of BBC Panorama with her family. She had been told the show would refer to the care home where her 18-year-old son Ben, who has a learning disability and autism diagnosis, was a resident. 

“We weren’t even warned what we were watching, as a family. We were just told there was something on,” she says. Claire would never forget seeing the abuse unearthed at Winterbourne View by the Panorama investigation that night. 

As she watched undercover footage documenting the appalling treatment of vulnerable residents – being hit, pinned down, dragged and taunted – it dawned on her that her son, though not seen in the film, must have been a victim too.

She was right: a nurse was charged with punching Ben in the face, breaking his jaw and dislocating two teeth. Yet the family, who are campaigning for an end to these unnecessary detentions, have had no respite, much less a moment of closure. Two years later, Ben was abused again at a residential unit. 

“When my son was born, and I found out he was disabled, I was glad we lived in this country,” Claire says, “I thought at least if he’s in this country he’ll be safe”. 

Ten years have passed since the Winterbourne View scandal. Successive governments have apologised for its sickening revelations – but targets for a “dramatic reduction” in the number of people with learning disabilities being detained in inpatient units have been missed repeatedly. 

The Transforming Care programme of 2012, a key objective of which was to enhance “community capacity” and liberate young people from these units, has been a failure. Currently, 2,055 people with a learning disability and/or autism are still locked away in these units, at risk of physical restraint, solitary confinement and anti-psychotic medication. 

Of this total, nine in ten have been sectioned under the Mental Health Act – though, scandalously, many have not been given a mental health diagnosis. 

As we consider the forthcoming overhaul to social care – the much-anticipated government review promised by the end of the year, prominent in Sajid Javid’s in-tray – the failure to date of the “care in the community” strategy must be acknowledged with absolute honesty. 

The original idea, launched as long ago as 1983 by Margaret Thatcher’s government, was a good one – at least in principle. Reducing the number of people in institutions and providing decent care at community level was self-evidently a humane and enlightened objective. 

Yet it is an objective that remains unrealised. And this is no fringe issue: almost one in five recipients of long-term social care in England (this area of responsibility is devolved) has a learning disability. Yet any reform is at risk of overlooking the crisis in community care in its entirety.

In 1989, Sir Roy Griffiths was tasked with assessing the problems facing social care. His report, ‘Community Care: Agenda for Action’, was a typically managerialist account of what was going wrong. There was an absence of leadership on non-residential care, he lamented, and the sector amounted to being “everybody’s distant cousin but nobody’s baby”.

The need to improve the system radically was acknowledged – again, in principle – but the necessary resources were not allocated. The reforms to “join up” social care – and reduce the perverse incentives towards institutionalisation of those with complex needs – were a failure. 

The most pernicious of these incentives remains in place today: the NHS, not the local authority, is responsible for the cost of inpatient units. To put it bluntly: what fiscal sense does it make for a cash-strapped local authority to argue for its residents’ release, when their continued residency in institutional care is almost cost-free? 

Bear in mind that at least 25 councils were nearly made bankrupt by the pressures of Covid. As with other public services, the pandemic laid bare decades of underinvestment in provision for people with learning disabilities and/or autism. As a result, seven in ten had their support cut; and they were six times more likely than the general population to die from the virus.

Facing this shortfall of funding, families are increasingly expected to shoulder caring responsibilities themselves. But Vivien Cooper OBE, CEO of the Challenging Behaviour Foundation, who herself has a son with learning disabilities, believes this is about much more than funding. “There’s enough money”, she told me, “we said so ten years ago – it’s just in the wrong place”. 

It’s true that the cost of locking people up in mental health hospitals is eye-watering – £557 million a year, according to the National Audit Office in 2015. That’s half a billion pounds spent on just over 2,000 people, for a policy that is as harmful as it is fiscally unsound. 

Dan Scorer, head of policy at the charity Mencap, speaks of a “crisis of delivery, not policy”: one in which we know what needs to be done but the joined up working and funding just isn’t there. When Helen Whately, the minister for social care, asked in the Commons on 10 June “What does good look like?” for those with learning disabilities and/or autism, she was essentially ignoring a decade of detailed research, policy proposals and something close to a consensus that would have answered her question.

That answer has its basis in well-funded community care, and amendment of the Mental Health Act so that families do not live in perpetual fear of their loved one being sectioned against their will.

Pooled budgets to link up government bodies, and community discharge grants or capital grants for social housing, are also all well-tested options which have a role to play. 

The replacement of Matt Hancock by Javid on 26 June was a sharp reminder that a reform strategy for social care was due by the end of the year – though some doubt that the government has the bandwidth to meet this deadline.

Social care reform is, after all, perilous political terrain (as Theresa May discovered to her cost in the 2017 general election campaign). It requires long-term funding, a plausible plan for a joined-up approach and, crucially and most controversially, fresh thinking on the extent to which we should be expected to raid our own assets. 

Should thousands be forced to sell their homes to pay for their own care? If not, can we reasonably ask the asset-excluded younger generation to shoulder the increased burden via general taxation instead? Or is a progressive wealth tax, hypothecated to social care, the answer? Demography alone requires an answer, and urgently so. But no answer will be pain free.

At present, the debate is landlocked. On the steps of Downing Street in July 2019, on the day he became prime minister, Boris Johnson promised to solve the social care crisis “once and for all” and declared that he already had a “clear plan”. 

Almost two years later, there is no sign of that “clear plan” – quite the opposite in fact, as the bereaved relatives of the thousands of care home residents who died of Covid as a direct consequence of the government’s reckless measures can attest.

All too often, those who are fortunate enough to receive adequate social care in the community do so because of tireless advocacy by their loved ones, rather than a triumphant execution of policy. But this is a price that no modern 21st-century society should expect its citizens to pay.

Take 40-year-old Justin, who has worked at TK Maxx for 20 years. He is among the six per cent of people with learning disabilities of working age known to be in paid employment. When he was seven, his mother Mary-Ellen explained to me, “an educational psychologist told us he should go into a home because he’d never be able to do anything”. 

Confounding expectations, and with quality specialist education, he was able to find employment and move into his own flat. He cycles through Richmond Park each morning, and is helped by seeing a social support worker twice a week.

Mary-Ellen believes that “the world is getting better from the perspective of how the disabled are treated, at work and in the community”. But her own contribution to his care has been immense. When letters from the bank arrived offering Justin money, he fell into debt and she intervened on his behalf. When the pandemic struck, and services were moved online, the alphabet soup of agencies failed to coordinate to provide the correct benefit he was entitled to and she stepped in to connect the dots. 

Mary-Ellen has spent countless hours patiently resolving preventable problems, exasperated by the ignorance of some institutions about Justin’s needs. 

Their response is always “get a power of attorney”, referring to the process by which Mary-Ellen would be placed in sole control of Justin’s finances. She doesn’t consider this a solution:“That ruins a person’s life because a power of attorney takes all their rights away from them and they can’t do anything – if you drop dead, the next day they’re in limbo”. Once, she told Tortoise, a director of Justin’s bank even wrote in response that they “weren’t in the business of looking after people who cannot look after themselves”.

At every stage of care in the community, therefore, it is families who act not only as backstop but as safety net – in as much as they can. This is tragically so in the case of inpatient units. As Scorer says: “In most cases, the only reason people are discharged is because of the tireless dedication and campaigning of their family members.” 

The testimony of Claire, whose son Ben is recovering from his ordeal, reinforces this analysis: “He is doing really well, but it has cost me my life. I made a conscious decision: do I have a life or help my son?”

Claire went to the cinema for the first time in 13 years last week. She lives in fear that, should she take her eye off the ball or turn off her phone, Ben will be detained in a unit once more. 

Vivien Cooper, whose support Claire believes saved her life during the torment of the years following Winterbourne View, attests to the exhausting demands facing families that fight for decent care: “I have a son with complex needs who lives in an individualised service with his own support team. That hasn’t just happened, I’ve had to make that happen. I’m able to do that, but I still have to keep a very close eye on it and there’s constant pressure.”

At the back of their minds, parents invariably fear that their child could end up sectioned against their will. The 2019 Whorlton Hall abuse scandal, where patients suffered horrifying psychological and physical treatment, demonstrated once again the risks posed by institutional care of this sort – and the abject failure of the Transforming Care strategy to address the problem.

The national conversation on social care rarely focuses upon this particular predicament. Media coverage of the anticipated overhaul tends to concentrate upon the treatment of the elderly, and zero in on the so-called spending cap – how much we should be expected to contribute to our care from our own assets before the state takes over. This assumes, of course, that families have such assets: a serious misapprehension in many cases which skews the debate away from fiscal and social reality.

For a start, we need to stop thinking of social care as a service that is needed only by older citizens. In fact, working-age disabled adults account for more than half of the adult social care budget, while almost £10 billion is spent yearly on children’s care by local authorities in England. Given that relatively few can undertake paid employment, the hypothetical cap on their personal assets is scarcely the principal question that needs to be addressed when planning for their future.

Meanwhile, the inhumane detention of some of the most vulnerable members of society continues; the crisis of unmet needs in the community compounds the suffering; and parents and loved ones are forced to step up to prevent total breakdown, to an extent that is intolerable in a nation as rich and supposedly generous in its social provision as our own.

According to the Commons Health and Social Care Select Committee’s analysis last year, an urgent injection of cash to the tune of £7 billion is needed by 2023-4 – and that’s just to avoid total collapse. The final bill would run to tens of billions more if it’s to meet the escalating crisis of unmet need. But – as those at the sharp end emphasise again and again – money is not enough. It needs to be targeted with intelligence, local knowledge and sensitivity.

Whatever the overhaul looks like, it must take greater account than seems likely at present of people with learning disabilities and/or autism. No less than the elderly, they are primary victims of this national crisis. 

The review is a once-in a-generation opportunity to make up for a decade squandered to political inertia. There is no conceivable excuse for those in power not to seize it.

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