Social Care: It is about the money.

 This is the second blogpost where I’m revisiting the work I carried out from 1990 onwards - in the light of what has happened since.

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After Merry Cross and I carried out a review of the Boundary Road service for the London Borough of Camden in 1990 - the subject of my last blogpost - I was asked to do a review of “the range of living options available to disabled people in Camden in the 16-64 age group, and to help formulate user-led directions for future development”. 

The review focussed on interviewing a representative sample of disabled people to identify their current accommodation and access to support; and what their aspirations were for how they wanted to live their lives and the support they needed. 

The brief I was given stated that local health and social care services aimed “to work together to provide a range of living and care support arrangements which are varied and flexible enough to meet the needs of [disabled people] and enable them to have a real choice about where and how they live”.

Most of the resulting recommendations made to Camden’s health and social care services focussed on what needed to be done in order for disabled people to have access to the kind of personal assistance needed to go about their daily lives. They are the kind of recommendations to be found in so many documents when disabled people’s voices have been heard and responded to. At a national level, these voices and aspirations were most clearly encapsulated in the 2005 Independent Living Strategy, which drew on thirty years of campaigns for independent living and which was supported by both government and opposition at the time.

The Independent Living Strategy fell victim to the years of austerity after 2010 with most of its commitments unfulfilled. This was a result, not only of a reduction in funding to local authorities, the closure of the Independent Living Fund and so on, but also of a shift in the language and focus of public and policy debates on social care.

Government priorities are now couched in terms of speeding up hospital discharge by e.g. legislating to enable discharge from hospital without a proper assessment of support needs, and commissioning more ‘intermediate care beds’. 

A different narrative is offered by Social Care Future - “a growing movement of people with a shared commitment to bring about major positive change in what is currently called ‘social care’”.

We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing things that matter to us.

These are the same aspirations that were being articulated by those I interviewed for the Living Options Review over thirty years ago. And even before that by people like Paul Hunt and John Evans, stuck in long-term residential care in the 1970s and 80s. 

And, as is evident from the brief for the 1990 review, Camden’s health and social services were motivated by a similar aim - to enable disabled people “to have a real choice about where and how they live”.

But today, there are so many barriers to people having that meaningful choice about ‘where and how they live’ if they need support to go about their daily lives.  Some of these barriers are the same as thirty years ago - such as the lack of suitable housing. Other barriers have got worse over the years.

For example, we thought that local authority budgets were squeezed in 1990. Today social care provision is suffering from the consequences of the years of austerity which followed the 2008 financial crash. By 2019/2020, local authority funding overall had fallen by 16% since 2010, largely because of a reduction in central government grants. The funding fell more in areas with higher levels of deprivation.

The gap between the tax-funded resources available for meeting older and disabled people’s needs for support, and the level of those needs, has grown year by year. Local authorities are increasingly unable to pay for the care they commission at rates which are financially sustainable for providers of care. The result, according to the Care Quality Commission and Care England, is that increasing numbers of care providers are handing back contracts to local authorities or refusing to take on such contracts in the first place.  

The consequences for the care workers whose organisations continue to take on local authority contracts is illustrated by the Conference organised by the Association of Directors of Social Services in the East Midlands, where providers were advised on how to refer their staff to food banks and how to access benefits to top up their wages. 

People who fund their own care and support find it increasingly difficult to find or pay for the support workers they need. At the same time, fewer older and/or disabled people are qualifying for publicly funded support. According to the Nuffield Trust, over the last few years, local authorities have tightened up their eligibility criteria and the means test has not risen in line with inflation. Moreover, when local authorities do assessments of the need for support they are increasingly using so-called ‘asset based approaches’ to direct people to rely on family members, neighbours and volunteers. And more and more requests for support result in no care being provided at all. 

Age Concern has estimated that in 2021/22 28,890 older people died while waiting for support. 

The social care sector continues to highlight the impact of low wages and poor working conditions on the level of vacancies and the Association of Directors of Social Services estimate that in 2022 an average of over 170,000 hours of homecare was not being delivered each week.

What do I conclude from all of this?  

Well, I would say that we’ve seen progress in that the language of the independent living and disability movements is generally more evident (even if it doesn’t always match the reality) and few would deny disabled people’s right to the same aspirations and opportunities as non-disabled people.  For older people progress in changing how we are seen is not so evident: a fact very evident to me now that I am both old and disabled in that it is my generally my age that prompts patronising language and low expectations. 

But even progress in disabled people’s particular ‘culture wars’ has not prevented a reduction in our chances of getting the support we need to go about our daily lives. 

And why is that?

During all our efforts to change the way support is delivered we often emphasised that it wasn’t necessarily about the money.  Indeed, in many instances we proved that it cost less to deliver choice and control in people’s lives than it did to confine them to settings and forms of support which denied autonomy and self-determination. 

In 2023, however, I have concluded that it is about the money. Social Care Future’s vision of what a good life looks like, the striving to continue to make progress of changing the way that people are supported - all of this is important.  But I can’t be the only one who fears that - unless we have significantly more investment in social care - such striving will be in vain. 

Disabled people were successful in our campaigns for direct payments - money to enable choice and control over who provided our support and how.  But if direct payments, personal budgets or personal health budgets are not sufficient to compete with the wages paid by supermarkets then access to a normal life is impossible.

The battle we haven’t won is for an increase in public spending on social care.  

The planned reforms to social care - initially introduced in the 2014 Care Act but yet to be implemented - would, if ever implemented, shift some of the costs of care borne by individuals onto public expenditure.  But they wouldn’t increase the overall amount spent on social care.

In my last blogpost, which focussed on nursing and residential care, I concluded that any increase in funding on that form of care would only make the sector more profitable for private investors with little impact on the quality of care or the working conditions of staff. In contrast, an increase in funding on care and support to enable people to stay living in their own homes would not only attract more care and support workers, it would also deliver what most people want.  Moreover, it would reduce the numbers having to go into the most expensive forms of social care. 

But today (4th April 2023), the government announced its long-awaited ‘work force plan’ for social care - which halves the amount of money previously announced as available for increasing and supporting social care workers.

It is hard to see what the future of social care is - and therefore what the future is for older and/or disabled people is - other than the continuing decline of a crisis-riven service.

Life is going to be harder and harder for those of us who need support - and sometimes life won’t be sustainable with such a lack of support. 

Social care may need more funding but it's more important to first look at where the money goes

Thirty-two years ago, in 1990, Merry Cross and I carried out a review of 48 Boundary Road, a residential service catering for disabled people of working age in the London Borough of Camden.

This had been a radical new service when it opened in the late 1970s in a specially designed building. It was intended to offer disabled people the kind of choice and control in their lives which was sadly lacking in more traditional residential services. As we wrote in our report: 

When the building was first opened in 1979, it quickly established a progressive and exciting reputation amongst both professionals and the disabled community….The early days of Boundary Road were part of a growing recognition of the rights of disabled people to live independently and the organisation did much to make this possible for a number of people.

Despite this, we found that - partly due to the poor design of the building and partly due to poor management - the service fell short of its original intentions. We concluded that “it has lost its way and there is a high level of dissatisfaction amongst both residents and staff”.

We recommended that the building was transformed into an Independent Living Resource Centre, with a small amount of residential provision which should only be for short stays.  It should be a base for services which would make it possible for young disabled people to live in homes of their own with choice and control over the support they needed to go about their daily lives.

Recommendations such as these fell on fertile ground in the 1990s, when the Independent Living and wider disability movements were gathering pace. Camden’s Social Services Committee accepted our recommendations. 

At that time, an increasing number of local authorities were making it possible for disabled people to have control over the support they needed by providing cash payments in lieu of services (direct payments) enabling them to live in their own homes rather than in residential settings.  The Independent Living Fund was also providing cash payments to more and more people and in 1996 direct payments for younger disabled people were finally legislated for by the Conservative government and then for older people by the subsequent Labour government.

So what happened to 48 Boundary Road?

Well, if you do a search for that address now, it comes up as a purpose built 100 bed nursing home. The original building must have been demolished sometime in the 1990s and I went down a veritable rabbit hole of trying to  establish the ownership and inspection details of the nursing home which was built on the site. As far as I can see it was initially registered as a nursing home in 2001 and passed through different ownerships since then.    

One owner was Southern Cross Healthcare, a provider of a large number of care homes which was taken over in 2004 by Blackstone Capital Partners, an American private equity business.  They expanded the business by taking over other care home companies and continued the practice of the previous private equity owner of selling and leasing back the properties, thereby releasing capital gains for the owners but increasing the overhead costs of running the services. In 2006 the company was floated on the stock exchange.

By 2011, Southern Cross was in financial difficulties caused by annually rising rents combined with a squeeze on the fees which could be afforded by local authorities and self-funders. It went into administration in 2012. 

The nursing home at 48 Boundary Road has had a variety of owners since then, mostly for only two or three years at a time.  Its inspection rating by the Care Quality Commission has never been great - in 2015 an unannounced inspection found five breaches of regulations; in 2016 the CQC found improvement but still one breach of regulations; in 2019 (under a new owner) CQC rated the service as inadequate; in 2020 (under yet another owner) two inspections rated it as requiring improvement.

When the building first opened as a care home it was called St John’s Wood Care Centre.  But in 2022 it re-opened, under yet another owner, as Hampstead Court Care Home.  It is marketed as being a ‘luxury care home’ in Westminster (though it is in Camden) and now has 82 bedrooms (down from 100) so presumably it has been refurbished. Like the previous care providers on this site it is registered for both older and younger people. Its CQC registered owner is Willowbrook Healthcare Limited but Avery Healthcare has recently welcomed it to its ‘portfolio’.

Public and political debate on social care has been dominated by two narratives - one that social care is in crisis because not enough money is going into publicly funded residential and nursing care (with one of the consequences being that self-funders are charged more and are thus subsidising local authority funded care); the second that people are being forced to sell their homes in order to pay for their care, with a particular emphasis on the injustice that some conditions attract funding from the NHS whereas others, particularly dementia, do not. 

However, instead of just focussing on how much money is going into social care, perhaps we should pay more attention as to where the money goes and what are the other factors responsible for both the cost and the quality of social care.

Privatisation of social care - both of care homes and of help provided to people in their own homes - was encouraged by the Conservative governments of the 1980s and 1990s and was part of the major reforms introduced following the 1990 NHS and Community Care Act which transferred funding for residential care from the social security system to local authorities.  All governments since then have continued the policy that the role of local authorities should be confined to commissioning rather than providing social care services.  

Today, more than 80% of nursing and residential home places are provided by private companies with some of the largest being owned by private equity firms. These companies treat their investments as high risk and high return, loading the businesses with debt and creating complicated ownership structures which often involve offshore registration and tax avoidance. During the pandemic, the profits of the largest private providers of social care increased while the gap between the pay of directors and that of workers widened. 

The investment companies who take over care homes tend to employ financial engineering measures which aim to extract a large sum out of the business by selling off and leasing back properties, taking out cash from the business on an ongoing basis, and/or increasing its value prior to selling it on. 

High quality services require a valued, well trained and stable workforce. Yet the social care sector is dominated by low pay, insecure and poor working conditions and this undoubtedly helps explain the high level of staff vacancies. That so many care-workers still manage to provide good care, when investment in many care homes is motivated not by a public service ethos but instead by how much money can be taken out of the business, is a tribute to the humanity of each of those workers.

If we don’t change the current model of how residential social care is provided there is a danger that any increase in funding will merely make the sector more profitable for private investors in residential and nursing homes with little impact on the quality of care or the working conditions of staff. Or indeed little impact on people's ability to remain living in their own homes, which is what most of us want to do.

Avery Healthcare, now the owners of 48 Boundary Road, was recently acquired by a joint venture between Reuben Brothers and the US real estate investment trust Welltower Inc.  The press release announcing the acquisition said it was expected to “generate significant future growth opportunities”.

The "catastrophic costs" of the new social care funding regime

 If anything shows where the current government’s priorities really lie, it’s the way social care funding is being reformed.  As Baroness Jane Campbell said in a recent House of Lords debate “protecting accumulated wealth has become the overriding goal of reform”.  

For years the ‘problem’ of social care has been framed to be the ‘catastrophic care costs’ faced by some older people who, if they need to enter residential or nursing care, have to sell their homes to pay for it, thus reducing their children’s inheritance. But the catastrophe for many working age disabled people takes the form of years of poverty and a denial of opportunities.  Moreover, a recent amendment to legislation currently going through Parliament will embed such poverty as an integral part of the new funding regime for adult social care.

This new regime, which will be introduced from October 2023, will place a ‘cap’ of £86,000 on what someone will have to pay towards their care. It is being funded by increasing the National Insurance contributions paid by people of working age and therefore disproportionately affecting those on low incomes.  

This is unjust in itself but the government is now attempting to introduce an amendment which would change the way the cap works so that the wealthier you are the more you benefit.

Unlike health care, social care is means-tested and in recent years local authorities have been increasing the amount that people have to pay towards the cost of necessary care. For those who rely solely on benefits, this means anything above a Minimum Income Guarantee has to be used to pay for their support

Initially, the proposed new funding regime assumed that the amount local authorities contribute towards someone’s care would count towards the cap of £86,000.  Now, the government intends that only the amount someone contributes themselves should go towards the cap. A real life example, provided by Inclusion London, illustrates the unfairness of this for those who enter adulthood already disabled.

“A disabled person like Nadia, without assets and minimal chances to enter the labour market and accumulate wealth, must pay for care from means-tested benefits. The Government sets minimum amounts of money people should be left with. These vary depending on age, personal circumstances, and the impairment's severity, starting from £72.40 per week.  

Young adults such as Nadia with high support needs are left with £151.45 per week to live on. With her contribution of £68 per week, Nadia and people in a comparable situation will have to live on as little as £151 per week for 24 years. Only after that would they qualify for free care and be able to keep all of their disability benefits.”

This situation would also apply to anyone who becomes disabled during adulthood.  For example, consider you are a 29 year old, progressing well in your career, still living with your parents but slowly building up savings in the hope that you’ll be able to afford your own home. But one day, out of the blue, you are involved in a car accident which leaves you paralysed.  Once you come out of hospital you find that your job is no longer possible so your only income is disability benefits - which are diminished by the contribution you have to make towards your care costs.   You will be now be condemned to years and years of living in poverty.  And your chances of ever getting a home of your own have disappeared. 

The 2011 Dilnot Commission recommended that : “All those who enter adulthood with a care and support need should be eligible for free state support immediately rather than being subjected to a means test”. Andrew Dilnot repeated this recommendation in the context of the current legislation. But instead, the government has made the new regime even less fair by introducing the new amendment currently going through Parliament.

And it isn’t only people of working age who are getting a poor deal from this new system - whatever age you are, the fewer assets you have the more likely you are to lose almost all of them.  

As Torsten Bell, of the Resolution Foundation said: “Here’s a simple way to think about the problem the government has created: if you own a £1m house in the home counties, over 90% of your assets are protected. If you’ve got a terraced house in Hartlepool (worth £70k) you can lose almost everything”.

The two examples on the government’s own website illustrate how, the more you have in assets and income, the greater proportion of those assets and income you keep. 

The Dilnot Commission’s original proposals rejected the approach the government is taking as it goes against the purpose of a means test - ie ensuring that the fewer resources you have the smaller contribution you make towards your care costs.

So the only thing we can conclude from this is that the Conservative Party has decided that its priority is to protect the accumulated wealth of its core vote.

There are members of the House of Lords who are trying to defend the interests of those who have little or no accumulated wealth.  Their next chance to do this is at Report Stage of the Bill, which begins on 1st March.  We can only hope that they have more success than they have had so far. 

Why have so many disabled people died of Covid-19?

 

Between January and November 2020, disabled people accounted for a shocking 60% of all deaths recorded from Covid-19.  We might think that this was because of the age profile or co-morbidities amongst this population group but Office for National Statistics analysis indicates that, even after adjusting for these factors the mortality rate was higher than for non-disabled people, and particularly so for disabled women and those with learning disabilities. 

Other factors placed disabled people at risk, regardless of their age or health condition. For disabled people in general, measures of deprivation were the biggest factor accounting for some of the increased risk of catching and dying from the virus while for people with learning disabilities place of residence was the biggest risk factor, “suggesting that living in a care home or other communal establishment was a major factor in the increased exposure of people with learning disabilities to COVID-19”.  

The risk posed by communal settings was also apparent amongst those deaths examined by the Learning Disabilities Mortality Review which found that:

 

A third (35%) of those who died from COVID-19 lived in residential care homes, rising to almost half of those with Down’s syndrome. A quarter (25%) lived in supported living settings. Priority must be given to supporting measures to prevent the spread of COVID-19 in these settings. 

These are circumstances in which, generally, people do not have sufficient choice and control in their lives.  Care homes and supported living services (group homes) in general have accounted for a disproportionate number of deaths during the pandemic, not only because people were discharged from hospitals without proper testing or isolation but also because of the movement of staff from home to home and the general difficulties of infection control in communal settings (especially when protective personal equipment was in short supply). 

The fact that socio-economic factors accounted for some of the higher death rate amongst disabled people in general is evidence of significant structural inequality. Since 2010, changes to the benefits system - particularly those introduced in 2016 - have had the impact of making disabled people poorer, increased food bank use and driven up debt levels. This inequality and its impact on the death rate amongst disabled people during the pandemic is therefore a direct result of government policy.

Nevertheless, according to the ONS data when all risk factors were taken into account, “a statistically significantly raised risk of death remained unexplained for more-disabled and less-disabled women (1.4 and 1.2 times respectively) and more-disabled men (1.1 times) but not for less-disabled men”.

This raises the question: Are disabled people at greater risk because of unequal access to treatment and healthcare once they become ill?

On March 21st 2020, the National Institute for Clinical Excellence issued a new guideline on who should be admitted to critical care during the pandemic, based on the 1-10 Critical Frailty Scale. The guideline suggested that those scoring seven (severely frail, completely dependent on personal care “from whatever cause, physical or cognitive”) and above would be “unlikely to survive even with medical intervention” and that only those ranked 1-5 should receive critical care.  A focus on what people can’t do for themselves was at the heart of determining whether someone should get access to critical care. So, if a person needed help with all daily living activities, then they were considered too ‘frail’ to benefit from a higher level of care (such as artificial ventilation). The Chief Executive of NICE defended the issuing of this guideline, saying that - although the guideline was developed in only 6 days - an equality impact assessment had been carried out, and:

Despite doing it so quickly, we had a comprehensive set of comments and they were supporting the use of the clinical frailty scale. It was something already in use across the system at that point. We did not hear any concerns about it being discriminatory in relation to disability at that point.

However, an outcry from a number of individuals and organisations and an Early Day Motion laid in the House of Commons resulted in NICE issuing a revised Critical Frailty Scale, which currently states that it should only be used for people “aged over 65, without stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism”.  Anyone, of any age, who had a “stable, long-term” condition, or “learning disabilities or autism” should receive “an individualised assessment of frailty” and the CFS score should not be used. 

This, of course, still raises the question about why the need for personal care because of conditions related to old age should determine access to critical care. For disabled people of any age, it also begs the question: What is meant by ‘stable, long-term condition’? Many people live with progressive conditions for years and previously ‘stable’ conditions are often associated with increasing need for support as people get older.

I am puzzled as to why needing support in your daily life (at any age and for any reason) is evidence per se that you would be unlikely to benefit from being admitted to critical care.  This is the antithesis of what we mean by independent living: the need for support does not mean that you cannot have self-determination or a good quality of life, instead it is having choice and control over the support you need which delivers such things. Neither should the need for support undermine your right to life.  

Yet it would appear that, not only might the need for support determine access to critical care, but it may have influenced whether some people got access to any hospital treatment during the pandemic.

In the early months of the pandemic, there were press reports of DNR notices and advanced care plans being applied across whole groups of people in residential settings.  These included care homes catering for older people as well as group homes catering for people with learning disabilities and/or autism. Reviews of the deaths of people with learning disabilities noted several instances where “frailty or ‘learning disabilities’ were given as rationales for a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision for people who had died from COVID-19, yet this was not the case for people who had died from other causes”. The report concluded that “Further reminders that ‘learning disabilities’ or a clinical frailty score are not appropriate reasons for a DNACPR decision in people with learning disabilities may be required.” 

The Care Quality Commission has found that some people living in care homes died potentially avoidable deaths because of inappropriate decisions about treatment.  Some were subjected to blanket decisions ruling out attempts at cardiopulmonary resuscitation, and “providers sometimes conflated decisions about DNACPR with decisions about whether to admit people to hospital or provide covid-19 treatment”.  An Amnesty International report specifically focussing on older people found considerable evidence of inappropriate or unlawful use of DNR notices by GPs, clinical commissioning groups, hospitals, and care homes.

Surely a clinically based decision is an experienced doctor’s judgement as to whether the treatment will improve your chances of survival to a quality of life that you find reasonable, combined with your views as to whether you want to go through the experience of whatever the treatment is itself. And in most cases I suspect that is what happens except that, in the case of disabled (and older) people, pre-existing prejudices about the quality, or indeed value, of someone’s life can get in the way - a particularly dangerous situation when someone has difficulty communicating their wishes, or is not even asked what they are. 

In addition, a failure to enable disabled people to benefit from treatment even once they are admitted to hospital may also help to explain the disproportionate number of deaths.  Jo Whiley, in bringing public attention to the need to prioritise people with learning disabilities for vaccinations also provided a graphic description on BBC Radio 4’s Today programme of the kind of support her sister needed (and initially lacked) when she was admitted to hospital with Covid-19.  She described how her sister’s communication and cognitive impairment meant she was terrified and reacted by trying to escape from staff trying to treat her.  It was only when her parents were allowed into the hospital and were able to reassure and calm her that it was possible to provide her with the treatment that enabled her recovery and discharge from hospital.  

But in how many other cases was there not such a response and happy outcome? Reviews of deaths amongst people with learning disabilities found, “The most frequently reported required reasonable adjustments that were NOT made for people who died from COVID-19 were: the provision of specialist learning disability services in hospital; tailoring care provision to meet individual needs; and ensuring the person was supported in unfamiliar settings by those who knew them.”

This is despite BMA ethical guidelines which state “Doctors should bear in mind that, as public servants, it may be appropriate to make reasonable adjustments for those with disabilities. That could mean permitting a learning disabled patient to be accompanied by a carer even if that is generally prohibited under infection control rules”.

For many many years, disabled people have been campaigning for choice and control in our lives, for the right to self-determination, to have a say in how we are supported, where we live and who with, and for the right to make the most basic daily living choices that most non-disabled people take for granted. We made progress but this was always limited, primarily because of the constraints inherent in the existing systems of delivering support and housing. 

Since 2010 the government has made disabled people poorer, failed to reform and improve social care, and neglected to develop the kind of housing and support services which would have delivered a better quality of life. All in all they have exacerbated structural inequalities and the mantra of ‘work is the best route out of poverty’ remains an insult to those who are not able to work and/or face direct and indirect discrimination.  

At the same time, we have been labelled ‘vulnerable’ with little or no recognition of the factors - which have nothing to do with our impairment or illness - which create socio-economic deprivation, unequal access to healthcare and, in this pandemic, a greater risk of dying.  In the run up to the Independent Living Fund being abolished in 2015, I wrote two blogposts entitled “What’s your plan for people whose lives we apparently can’t afford?” The lack of any plan has had its stark consequences during this pandemic. 

Using the law to challenge charges for social care

 A few weeks ago I was reminded that - while we are all focussed on how to survive through the current difficulties - there are yet other struggles that disabled people and their allies are engaged in which have been going on for years and which continue.  The reminder came because of a rare victory against the impact of the failure to properly fund social care. 

The stark facts of the funding crisis facing social care are that some councils “could run out of cash”  and it would require £2.1bn to keep provision at the current levels (allowing for increase in demand) by 2023/4 and £10bn to restore provision to what was available in 2010/11.  

There are many ways in which this situation is impacting on older and/or disabled people and their families.  One is that local authorities are taking more of people’s benefit income to pay for the (often reduced) social care that they have been deemed eligible to need.

This is what happened in Norfolk, resulting in a fight-back from those affected and culminating in a Judicial Review of the local authority’s proposed increases in social care charges.

As Disability News Service reported, the High Court found that Norfolk County Council’s proposed new charging policy discriminated against people with high support needs because they would be charged proportionately more than those with lower support needs.

This court case came about as a result of many months of grassroots campaigning by an informal network which, organised via a Facebook group, grew to over 500 people. Growing such a network is important as the more people involved the more likely it is that someone will come forward who both qualifies for legal aid and who feels strong enough to go through what is usually a long drawn-out and emotionally draining process. 

During the course of campaigning, the group issued Freedom of Information requests to both government and other local authorities.  They discovered that the Department of Health and Social Care has little or no information on how local authorities are using the Guidance and Regulations relating to charging; and that other local authorities are also seeking to raise more money from charges, including by adopting the same changes as Norfolk. This confirms research carried out in 2018 which concluded that charges are a ‘tax on the need for support’. 

The solicitors for the claimant have issued a statement which describes the case and what was challenged. Inclusion London also hosted a webinar with the barrister who argued the case.  However, I thought it might be useful to summarise key details of the judgement in the hope that it might encourage people in other local authority areas to consider whether their Council’s charging policy might also be challenged. 

The case concerned a young woman who had previously paid a charge of £16.88 per week as her means-tested contribution towards the support she needed but who, when the changes were fully implemented, would be charged £50.53 per week.  This would have resulted in an almost 20% reduction in her income which was entirely from benefits.

This increase in charges resulted from two changes proposed by the Council.  The first was to reduce (in three stages) the amount that a person’s income should not fall below (the Minimum Income Guarantee); the second to take into account all of the daily living component of Personal Independence Payment.

Her lawyers argued that “The Charging Policy discriminates against severely disabled people, contrary to Article 14 read with Article 1 of Protocol 1 and/or Article 8 of the European Convention on Human Rights”.

The European Convention on Human Rights was brought into UK legislation by Section 6 of the Human Rights Act 1998, which makes it "unlawful for a public authority to act in a way which is incompatible with a Convention right”.

Article 1 of Protocol 1 of the Convention says that each person “is entitled to the peaceful enjoyment of his possessions. No one shall be deprived of his possessions except in the public interest and subject to the conditions provided for by law…” It has been long established that financial support a person receives from the government, including welfare benefits, falls within this article.

And Article 14 says that “The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.”

There were four questions that the Judge in this case had to consider:

1. Do the circumstances "fall within the ambit" of one or more of the Convention rights?

Both sides agreed that it did.

2. Has there been a difference of treatment on the ground of one of the characteristics listed or "other status"?

Lawyers for the claimant argued that the difference of treatment related to being severely disabled, which they said was covered by the term “other status”.  The judge agreed that being severely disabled was “exactly the sort of ‘personal characteristic’ which has always been recognised as protected from unjustified discrimination under Article 14”.

Norfolk County Council argued that ‘severely disabled’ was not precise enough a term in order to be covered by Article 14. The judge ruled that, on the contrary, this had been clearly assessed and determined to be the case by the fact that the claimant had been placed in the Support Group of ESA and received the enhanced daily living component of PIP.

3. Have two people who are in a similar position been treated differently?

Lawyers for the claimant argued that the charging policy meant that a higher proportion of her income was taken in charges than was the case for someone who was less severely disabled.

This argument rested on two points. The young woman could not work and was therefore entirely reliant on benefits, unlike someone with lower support needs who might be able to work and whose earned income (according to the Regulations) cannot be taken into account when assessing how much they should be charged. In addition, her assessable income was higher because she qualified for the enhanced rate of PIP daily living allowance. 

The Council argued that the charging policy was not discriminatory as it applied to everyone.  The judge said that it was because the impact was different for people who were severely disabled. “The way the Charging Policy is constructed means that, because her needs as a severely disabled person are higher than the needs of a less severely disabled person, the assessable proportion of her income is higher than theirs”.

4. Is there an objective justification for the different treatment?

Norfolk County Council put forward four objectives for its charging policy.  Its main argument was that it was facing a funding shortfall of £39m over three years. It also highlighted an aim of increasing employment amongst people with learning disabilities and pledged to provide £1m of the projected £5m savings into helping to achieve this. 

The judge quoted a previous case which ruled that "Saving public expenditure can be a legitimate aim but will not of itself provide justification for differential treatment unless there is, in the case in hand, a reasonable relationship of proportionality between the aim sought to be achieved, and the means chosen to pursue it (i.e. the measure under challenge)”.

The judge found that the Council did not recognise - in any of its documents or discussions - the bigger impact of the policy on severely disabled people compared with less disabled people. Neither had the Council considered an alternative approach suggested in the Guidance, namely that a percentage of income above the Minimum Income Guarantee could be taken rather than all of it. 

He also said that the impact of the policy on the claimant would restrict her independence which contradicts one of the Council’s stated aims of changing the charging regime.

The judge concluded that “The objectives identified are not sufficiently important to justify discriminating against the most severely disabled as compared with the less severely disabled in order to advance it”.

There were a number of other points which were argued during this case but I’ve identified what seem to be the main ones in the hope that this will help other disabled people, their allies and organisations to identify possible similar challenges to what other local authorities are doing or planning to do with their charging policies.

Some useful links:

Inclusion London’s Disability Justice Project aims to help disabled people use the law to fight for their rights. See, in particular:

https://www.disabilityjustice.org.uk/financial-assessment/ for information about how councils should carry out financial assessments in order to charge for social care.

How to find legal advice https://www.disabilityjustice.org.uk/where-to-find-legal-advice/

How to find out if you might qualify for legal aid:

https://www.gov.uk/check-legal-aid

Another National Disability Strategy...?

A Briefing document attached to the Queen’s Speech presented to Parliament on the 19th December 2019 announced the government’s intention to develop a National Disability Strategy. The announcement  indicated that this Strategy would include housing, education and transport. A forthcoming DWP Green Paper would be about encouraging "employers to play their role in retaining disabled people and people with health conditions in the workplace".  Social care was not mentioned at all - which is particularly unfortunate as current political debate on social care has been confined to how to prevent older people having to sell their homes, with very little consideration of how public funds are currently used or might be better used. 

Those civil servants working on this proposed Strategy might like to revisit the previous national strategy, published 15 years ago, consider what progress has been made, and what lessons might help inform future policy development.  Improving the Life Chances of Disabled People (which I worked on as part of a team in the Cabinet Office) set out an ambitious 25 year aim that:

By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society.

There were three aspects of ‘Improving Life Chances’ that disabled people’s organisations particularly welcomed.

The first was a commitment to “mainstreaming disability issues” and to achieve a “step change in the participation and inclusion of disabled people”.  In order for this to be achieved the Strategy set out how disabling barriers to equal access to housing, education, employment, transport, health services must be addressed; identified specific ways of tackling such barriers; and emphasised the importance of the Public Sector Duty to promote disability equality.

The second was the adoption of the definition of independent living as referring to 

all disabled people having the same choice, control and freedom as any other citizen - at home, at work, and as members of the community.  This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations.

This definition underpinned the Strategy’s proposals for a new system of delivering the support that people needed - a system which brought together different sources of funding to provide one single pot of resources, a budget that people would have control over and which could take in the form of cash and/or services.  

Eligibility was to be based on “requirements arising from disabling barriers” and budgets would “enable different types of support needs to be met, including personal care; family roles and responsibilities; access to the community, employment, voluntary work, training and education, and leisure activities; and include equipment, personal assistance, transport, adaptations and advocacy.”

Finally, the strategy not only recognised the importance of central and local government involving disabled people and their organisations in policy development and in the commissioning of services, but also contained a commitment that 

By 2010, each locality (defined as that area covered by a Council with social services responsibilities) should have a user-led organisation modelled on existing Centres for Independent Living.

From the 1980s, Centres for Independent Living had been set up in a number of areas by disabled people, primarily to support people using direct payments.  The Strategy envisaged that, at a minimum, these organisations should be funded to provide: information and advice; advocacy and peer support; assistance with self assessment; support in using individual budgets (including cash payments) to meet needs; support to recruit and employ personal assistants; disability equality training; and consumer audits of local services.

Although progress was made on some of these commitments, the financial crisis of 2008 and the ensuing years of austerity to a large extent halted further improvements and much more needs to be done in order to achieve disabled people’s rights ‘to live in the community with choices equal to others’ (as set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities).

There are strong social justice arguments for pursuing such a right.  But we also have to recognise that in the current context there is also a need to make sound economic arguments for policies to deliver this aim.  These arguments fall into two categories: the waste incurred by spending public resources on services which do not deliver good outcomes and, at worst, harm people; and the benefits resulting from investing in people and services which deliver good outcomes not just for the individuals concerned but for society in general.

In order to make our case we need to identify ‘windows of opportunity’ in the current social and political landscape.  Although a few of these may be found in the context of national politics and policies, it is likely that most are to be found within grassroots initiatives and communities - the most innovative and empowering developments have always come from those people (and their allies) whose lives are negatively impacted by a failure to invest in their futures.

‘Upstream’ costs and ‘downstream’ benefits

One of the most powerful, and in the end successful, arguments made by disabled people living in residential care during the 1970s and 1980s concerned the benefits of investing resources to enable them to live in the community with choice and control over how their support needs were met.  A key barrier for many, however, was the lack of suitable housing for them to move into.  This necessitated up-front expenditure on adapting or building such housing and, for many, it took years to persuade councils or housing associations to make such an investment.

Both then and now there is insufficient incentive for government, and after ten years of cut-backs little ability for local Councils, to make up-front investments in either housing or in community support services which would in the longer term both save money and improve the quality of people’s lives.  A key current example is the money tied up in expensive placements of people with learning disabilities and/or autism in so-called Assessment and Treatment Centres which makes it difficult to develop the community-based services which would deliver better outcomes and, in the medium to long run, would be likely to cost less. (See Note 1)

Fifteen years ago, the Life Chances strategy suggested an ‘invest to save’ approach in recognition that budgets currently tied up in institutional and/or disempowering services cannot be reduced unless additional up-front funding is provided for community-based services promoting choice and control in people’s lives.  When the Office for Disability Issues was set up following publication of Life Chances, we tried to persuade Treasury to take this approach in the 2006 Spending Review, but only managed to secure funding for a small number of projects which aimed to identify the costs and benefits of independent living.  The lessons of these - which involved support to parents with learning disabilities; independent advocacy; choice and control for older people - were lost in governments’ responses to the financial crisis of 2008.

Since then cost/benefit arguments about ‘invest to save’ have generally been confined to what steps can be taken to result in future savings to the NHS.  For example, how housing with support can make it possible for older people to leave hospital or avoid hospital admissions.

Current public and political debate on social care focusses on older people - and even then its focus is the extremely narrow one of whether people should have to sell their homes to finance residential care.  However, although there are fewer disabled people of working age using social care services than older people, total expenditure is roughly the same for each group and the number of disabled people of working age seeking support is increasing. 

Most of the increase in numbers and costs of social care for disabled people of working age is accounted for by people with learning disabilities and those with mental health support needs.  Yet it is in expenditure on these groups that clear examples can be found of unnecessarily high costs being incurred as a result of insufficient and/or inappropriate support being provided at earlier stages.  

A failure to adequately meet the needs of those who are born with or acquire physical and/or cognitive impairments and/or mental health difficulties not only results in poorer outcomes for individuals and their families but incurs unnecessary costs to society.  The recent announcement (in the briefing on the Queen’s Speech) of “£74m over three years for additional capacity in community care settings for those with learning disabilities and autism” is to be welcomed, as is the continued funding for local authorities to support former recipients of the Independent Living Fund.

However, neither of these announcements recognise the full extent of the benefits to be gained by ‘upstream’ expenditure to reduce ‘downstream’ costs.  For example, people with learning disabilities were the largest group amongst those in receipt of Independent Living Fund grants and the government recognised they would be particularly likely to be disadvantaged by its closure.   While funding for existing recipients has continued since the ILF closed in 2015, an increasing number of people who would previously have been able to look to the Fund are no longer getting access to the resources needed to enable them to ‘live in the community with choices equal to others’.  How many of those now in expensive long-stay hospitals would previously have received an ILF grant to enable them to remain living in their own home?  

A failure to invest in accessible and adaptable housing also results in unnecessary costs and a denial of the right to a private and family life for the 20% of people with a newly acquired spinal cord injury who are discharged from hospital to a care home.  How many of these would have instead been able to return to their lives, families and friends if we had invested in accessible housing? Last summer the Minister for Disabled People announced the government’s intention of consulting on requiring all new dwellings to meet the currently optional ‘accessible and adaptable’ standard in Building Regulations. However, there has been no further mention of this in recent government announcements concerning building regulations reform.

These are just two examples amongst many. The national policy debates on both social care and on housing need to be informed by the potential for making a better use of public resources by considering taking a longer-term, and cross-government, approach to outcomes. Debates on NHS funding and policy are often dominated by a preventative approach; while this is sometimes spoken of as the aim in social care, the reality is that rationing of scarce resources results in lower level needs remaining unmet with long-term consequences for both health and well-being.  Whatever new funding proposals are developed for social care, they must enable an ‘invest to save’ approach.

‘Top down’ diktat or community-led initiatives?

The current Prime Minister stated his intention to ‘fix the crisis in social care’ . Bryony Shannon has detailed everything that is wrong with this statement - the biggest problem being that it is “echoing the paternalistic approach that social care needs to move away from. He is taking charge, exerting his authority from ‘the steps of Downing Street’ and ‘doing-to’ us, the public.”    

In contrast, the Social Care Future movement is reframing the issue of ‘social care’.  This is a growing network of “people with lived experience, families, professionals, managers, support providers, user-led organisations, politicians, commissioners, community groups and others”.  They have come together to co-write a common aspiration:

We all want to live in the place we call home with the people we love, in communities where we look out for one another, doing the things that matter to us and with the peace of mind that should we, our families or neighbours need some support from public services to do so, that it will be there for us.

In contrast to the current social care system generally only responding to care needs when they become acute, initiatives which come from communities are commonly identifying needs which, if responded to, prevent or delay the development of greater need.  As research on community-led social care services found, these services are not only preventative, but also create good jobs - another key aspect of the sustainability of any service. 

If reform of social care merely focusses on stopping older people having to sell their homes in order to pay for residential care, it will fail to address the fact that expenditure on meeting the needs of younger disabled people (including disabled children) is already taking up half of the social care budget and is increasing.  Most importantly, it will fail to address the fact that social care resources in general are all too often tied up in services which do not deliver either good outcomes for those using them, nor good jobs for those working in them.

The solution is to harness the resources which exist within communities, to invest in organisations which are accountable to those for whom they provide a service, organisations which seek to care about what people care about and work alongside them to make it happen. 

The empowerment envisaged by the Life Chances proposals contained in the chapter on independent living failed to materialise.  Personal budgets were incorporated into bureaucratic priorities and those people who were intended to benefit from personal budgets had no say in how they were implemented.  It failed because most local authorities did not bring disabled people and their organisations into the heart of implementing personal budgets and commissioning services. It failed because the years of inadequate funding created insuperable barriers to ‘upstream’ investment to deliver ‘downstream’ savings.  It failed because communities were not enabled to develop innovative responses to promote participation and inclusion. 

These are important lessons that both the proposed National Disability Strategy and future social care policy need to address.

Addendum:After I published this blogpost, I listened to a podcast where someone said “If you want to fix potholes, fix social care”. The same evening I read in my local paper of a road with 50 potholes.  When developing the Independent Living Strategy at the Office for Disability Issues, we suggested to Treasury that no spending decisions in one policy area should be made without assessing any consequences for other policy areas. If this suggestion had been implemented, it would perhaps have been recognised that, if you squeeze local authority budgets in the way they have been in recent years, they will soon be able to do little more than their statutory duties - and repairing potholes (and much much else) drops further and further down the list of priorities. And of course potholes have consequences for the NHS - when cyclists and motorcyclists end up in A&E. 

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Note 1: Social model language would use the term 'people with cognitive impairments' or 'learning difficulties' rather than people with learning disabilities, (and refer to neuro-diversity), and these would be my preferred terms.  However, people who are involved in the struggle against ATUs tend to use the term 'learning disabilities'.  This is often because the legal and policy frameworks within which they are trying to get access to support use this term.