LEONARD CHESHIRE DISABILITY – WRITTEN EVIDENCE (ASC0079)

1. Introduction

1.1 Leonard Cheshire is one of the UK’s leading charities supporting disabled people. We support individuals to live, learn and work as independently as they choose, whatever their ability and to play our part in creating a fair and inclusive society.

1.2 Led by people with experience of disability, we are at the heart of local life — providing opportunity, choice and support in the communities we work in. This includes providing social care through supported living and registered care homes and supporting disabled people with educational and employment opportunities.

1.3 We provide over 120 care services across the UK, including supported living facilities, care homes and nursing homes. Our UK care services support over 3,000 people, many of whom have a range of complex disabilities and health conditions.

1.4 This response has been informed by this experience as well as the feedback and input of our campaign volunteers in England with lived experience of drawing on social care who have provided their testimonies and reviewed earlier versions of our response.

2. Summary

2.1 At Leonard Cheshire, we believe the invisibility of social care and the wider narrative around the system and how it works for disabled people is a barrier to substantive reform. Currently, social care is often only visible when something goes wrong and discourse focuses on what is wrong or broken in social care, rather than what it is and its role as an enabler for disabled people.

2.2 This presents challenges for disabled people, who are not adequately heard in discussions on social care from strategy, to design and delivery. This means disabled people are often confronted with a complex system, that is not easy to understand or navigate, without a clear sense of what good would look like for them.

2.3 At the heart of social care being an enabler is that disabled people have the choice and control over the care and support they receive. Currently, the social care system is one that does not centre choice, control, and independence at the heart of all decisions on care and support.

2.4 The key challenges for disabled people in the future of social care are being able to draw on social care, being able to personalise that care to meet their needs and being able to afford any costs incurred over the duration of their care journey. Current funding commitments and reforms to the social care system will not adequately address these challenges in the future.

2.5 The Government’s recent promise to put ‘people at the heart of care’ should provide more than lip-service and allow for meaningful co-production, and that must happen at all levels; individual, service, and strategic. Currently discussions about care don’t begin from a position of shared power and control, but rather from a negative position where disabled people feel they are faced with costs and seen as a burden rather than an equal partner in designing their social care.

2.6 Truly co-produced social care means that disabled people can draw on care and support that is person-centred, tailored to their individual needs and circumstances, and enables them to “thrive” and not just “survive”.[1] Care that is accessible, at the hours they need, and works from the start.

3. The invisibility of adult social care, and its consequences

3.1 One of the fundamental challenges facing adult social care is that it is ‘invisible’. Do you agree? What do you think explains this?

3.1.1 Unfortunately, at present among the public, social care is often only visible when something goes wrong or at the point that social care needs arise. It is at this point that the reality, complexity and inequality of current social care provision is realised. This is when issues around the level of care people receive, quality and the catastrophic costs to those drawing on care emerge. Whilst social care has been high on the political agenda in recent years, this has not necessary translated into wider public discourse. Where it has, there is a widespread narrative that social care is seen as something that is ‘broken’ and needs ‘fixing’, with this emphasis often focused simply on older people in the system,[2], and very little clarity on what social care actually is.

3.1.2 Leonard Cheshire Campaign Steering Group members with experience of drawing on social care, as part of our ongoing Care for Equality campaign[3], have told us that they want the narratives and perceptions of social care changed to be more positive: “Change the perception of social care as something that is done to someone. Instead for it to be viewed as an enabler. ‘Look what people can achieve if they receive the right support!”

3.1.3 Social Care Future has highlighted that these dominant narratives around social care at present may preclude the public from seeing a positive vision of what good care and support is, and the need for investment to deliver on that vision. The social care system is seen as being ‘broken’, with a paternalistic perspective on those that use it as ‘vulnerable’.[4] Leonard Cheshire agrees on this point, and with the view that social care should be seen as a route to enable people to live a fulfilling life and connect to the people and things that matter most to them.[5]

3.1.4 Disabled people of working-age are particularly ‘invisible’ in public discourse and policy making around adult social care. Leonard Cheshire has consistently emphasised that discussions on social care reform need to expand beyond care for older people, residential care, and personal care. Such discussions should centre the needs of working age disabled adults in plans for future reforms. This is with a view to ensuring those reforms recognise the purpose of social care is not to merely support individuals’ basic needs, but to fulfil their right to live full and independent lives.

3.1.5 In policy discussions, social care is often separated out rather than seen as a vital tool to help achieve complementary Government policy agendas such as reducing the disability pay gap and ‘levelling up’. Though the recent social care integration white paper has made positive steps towards better joined-up-working between health and care sectors to improve health outcomes and consistency of care for disabled people, more still could be done.

3.1.6 Research from Leonard Cheshire has shown that accessing good quality, tailored and well-funded social care can increase labour market participation to levels closer to the average for non-disabled people, and contribute to eliminating the disability pay gap. In turn this would generate an additional £6-£20 billion in annual income for the UK economy, and greatly benefit local communities.[6] Economic arguments are not the reason to reform social care, but they should no longer be the barrier. Disabled people should be able to access good quality, consistent care that they have control and choice over, first and foremost as it is a fundamental right to do so. Social care is an enabler, both for disabled people and wider society and economic arguments should not act as a barrier to a well-funded social care system.

3.2 How does this invisibility reflect the experience of social care for people who draw on care and support and their carers, and how is this experience different depending on the age range and particular circumstances of those who draw on care and support and their carers?

3.2.1 Discussions on social care reforms have often left out the experiences and care needs of working-age disabled adults, who make up one in three people who currently access care. In England, half of local authorities’ social spend is on working age disabled adults. The focus in public discourse and in the development of policy is largely the basics of personal care (washing, meal provision, etc), older residential care, and debate over selling one’s house to pay for care. But what working-age disabled people are telling us about their needs is strikingly different and is being unheard. Good social care goes beyond basic survival needs, it means people can see their friends and family, travel, take up hobbies, go to work, volunteer or pursue education. To do the things many of us take for granted. It is the needs of working age disabled adults that are so often invisible.

3.2.2 The invisibility of social care creates immediate issues when disabled people wish to draw on care and support for the first time. Disabled people tell us that they are confronted with a complex system, that is not easy to understand or navigate, without a clear sense of what good would look like for them. Actively seeking out others who have experience with the system is one way people are getting by, but this may not be possible among the support networks of all disabled people who wish to access social care for the first time. Clearly signposted and easy to navigate processes must be established to ensure everyone is able to exercise choice, control and independence over their care and support.

“The ease of setting it up, is an issue. You need a good support network around you and you need to be able to talk to someone who has that experience. You need to find the right people to enable you to access social care.”

H (37, Cheshire)

“People don’t know how to access care, so they are just grateful for whatever they get. Many people don’t understand they can query their care and improve it.”

F (53, Shropshire)

3.2.3 Disabled people have told us that the language used by social workers being full of “jargon”, acts as an immediate barrier by creating a lack of “understanding” of the services available. In some cases, the full range of support available to disabled people in their local areas is not outlined by social workers.[7] This is despite it being a legal requirement for local authorities across the UK to provide people drawing on social care with comprehensive information about the support available to them in their local area.[8]

“Accessing social care and understanding what is available is challenging. We have to fight for it. I have never been asked what I want. There should be choice. The whole system needs an overhaul, it’s not working as it stands.”

C (33, Kent)

3.2.4 Making social care more visible, uplifting, and spreading examples of what good looks like may take time, but there is an immediate need to ensure as a bare minimum, disabled people can avail of the information they need to have choice and control over their care and support. Accessible information about the full range of care and support available in each local area should be available to all disabled people, to enable them to make an informed choice about their social care. Having this information is also important so that disabled people are aware of what rights they have and can challenge the care and support they receive, if necessary, rather than accepting an unsatisfactory level or form of care.

“I would like to see good quality information available to navigate the social care system. It is very complex to understand especially from a young age. Everyone should have access to good information to be able to make informed choices about their care.”

T (details withheld)

3.2.5 More needs to be done to ensure that the social care disabled people receive is flexible and person-centred, in order to fully and safely meet each person’s needs and wishes, all of which should be the first considerations when any assessment for social care is conducted. Disabled people have told us that the care they draw on should be more flexible and adaptable. As we continue to live with Covid-19, this could look like providing phone calls to check on people and supporting the safety of disabled people and the social care workforce.  

3.2.6 The invisibility of social care also means that disabled people are often not encouraged to have a personal assistant. Despite the fact that many disabled people awarded a social care package from their local authority are entitled to manage this care themselves through a personal budget or direct payments, working-age disabled people tell us the process of finding personal assistants and navigating the system, and making use of direct payments challenging. Many others don’t realise this is a potential option for them. Local authorities need to put in place adequate information and support for disabled people to benefit from a personal assistant which can sometimes better suit the care and support they want, allowing disabled people who wish to make use of this option greater choice and control as well as opportunity to be an employer.

3.3 How would you define the purpose of adult social care? How does the invisibility of adult social care get in the way of achieving this purpose?

“For me, social care is about care and support in my own home. It enables me to get out and be independent and enjoy life as much as possible.”

F (53, Shropshire)

3.3.1 Rather than tightly defining the purpose of adult social care, Leonard Cheshire recognises that good quality social care is that goes beyond basic survival needs, giving support to enable people to remain active and engaged in their communities – including going to work, seeing family and friends and participating in leisure activities. The key part in this being that social care is an “enabler” that allows those who draw on it to define its purpose in line with their needs and wishes.

“My social care is really my arms and legs! It enables me to live a fulfilling life, so I don’t feel restricted. It enables me to socialise. One of the biggest differences social care has made to me is independence. I can now live independently and socialise with friends and I have a job. It is that sense of flexibility and control that is important.”

H (37, Cheshire)

3.3.2 At the heart of social care being an enabler is that disabled people have the choice and control over the care and support they receive. The current, often paternalistic view of social care is one that doesn’t centre choice, control and independence at the heart of all decisions on care and support.

“The problem with that question is that we all have different definitions of what quality is, what social care is. To some good quality is a bargain but others say you get what you pay for. With social care, I start by basing it on the social model of disability rather than the medical one. This puts the disabled person’s needs at the centre rather than looking at them as a problem to be solved. I feel guilty that I need help and I wish that there was more understanding and equality.”

D (54, Derbyshire) 

3.3 What are the key challenges that people who draw on care and support and carers will face in the future, which are not factored into current assumptions related to the social care system?

3.3.1 The key challenges for disabled people with the future of social care are being able to draw on social care in the first instance, being able to personalise that care to meet their needs and being able to afford any costs incurred over the duration of their care journey. At present current assumptions around funding requirements and reform to the social care system have not adequately addressed these challenges for working-age disabled people.

3.3.2 The process of assessing disabled people’s eligibility for social care can be a barrier to personalisation of care. Assessments are conducted too quickly, prohibiting social workers from developing an in-depth understanding of each individual’s life. People report not being listened to and tell us that staff conducting assessments should have better disability training, to enable assessments to be truly individualised and person-centred.

3.3.3 Working-age disabled people (36%) are more likely to have their requests for social care result in no services being provided compared to older people (25%), a figure that has been slowly increasing year on year.[9] Disabled people have told us their concerns about eligibility criteria to access social care, which can place them in quite an adversarial position. Many felt that disabled people often have to ‘prove’ their eligibility for care. What this can mean in practice is highlighted by the experiences of Sarah, a disabled person who shared her story with us.

3.3.4 A substantial postcode lottery exists across the country as to whether a request for social care will result in any services being provided, due to differing approaches to eligibility criteria. For example, in West Sussex, 93% of working-age disabled people are either provided with no social care services or simply signposted elsewhere following requests for support, compared to East Sussex where this is the case for only 25% of requests.[10] As working-age disabled people draw on social care for many years this can also create problems when moving home. Disabled people have reported losing access to their social care package when they moved between local authority areas.[11]

3.3.5 Recent figures from ADASS also highlight that a growing issue is considerably long waiting times for initial assessments and then for care and support or direct payments to begin. Between November 2021 and January 2022, they report a 49% rise in the number of people waiting over six months for an assessment and a 71% increase in the number of people awaiting care and support or a direct payment to begin.[12] If these trends continue, many disabled people will be left waiting for vital care and support, affecting their independence and freedom.

“It is always just the basic support, the bare minimum of what is available to support me with everyday life. I’ve never been offered care in the sense of someone to help me with a trip out for example. I’d like the opportunity to go somewhere with support. I used to be a teacher and was never offered any extra support then. You are just left to your own devices and if you need extra support then you have to fight for it!”

C (33, Kent)

3.3.6 Working-age disabled adults are not getting choice and control over the social care they draw on in a consistent manner, meaning their social care packages are not personally tailored to their specific needs. This is even though the Care Act 2014 puts in place a statutory duty for Local Authorities to provide comprehensive information to people who draw on social care, and to create person-centred care plans.

3.3.7 Funding pressures on Local Authorities have affected their ability to deliver these statutory obligations, with considerable negative impacts on disabled people and the care they can access. Long-term underfunding of social care has meant that even before the pandemic, 20% of adults who required care reported that they had gone without meals due to not receiving the care they needed.[13]

3.3.8 Research by Leonard Cheshire has found situations like this have continued, and for working-age disabled people lives have been curtailed due to inadequate social care and support over the last 12 months. Inadequate social care in the past 12 months has meant:

-          41% have not been able to visit family and friends              

-          36% have been unable to leave their house, shop for food or clean their home

-          33% have been unable to partake in their hobbies

-          28% have not been able to prepare a meal[14]

“Good social care is hard to find within budget. And that is well suited to you as an individual, to receive the support and hours that you want. The budget is always tight, and care is expensive. I have been given no help to plan for the future and there will come a point when my mum can’t help me.”

C (33, Kent)

3.3.9 Disabled people told us that the limited hours of care they access, and the rigidity in the range of activities and support offered by some care providers, prevented them from living their lives as they wished. Disabled people have told us they are often offered what feels like a one size fits all care package, with no aspect of personalisation or consideration of how their care and support needs or personal circumstances may change in the future. This makes planning for the future more difficult for the large percentage of this group who access care and support for a significant period, and some for the entirety of their adult life.[15]

“I have been offered help with the basic things like shopping and cleaning, which I can do myself. I would like support with the things that would improve my quality of life. The local authority seems to offer a one size fits all approach and only want to support me with the basic task orientated stuff that I can do myself. They don’t listen to what I want and what will improve my life.”

S (42, Cambridgeshire)

3.3.10 One considerable challenge disabled people who draw on care will face in the future is the cost involved in doing so. Working-age disabled people are considerably more likely to have lower incomes and savings, with more than a third (38%) living in poverty and having, on average £108,000 less in assets and savings than older people. [16][17] This means they are more likely to rely on the publicly funded social care system and stand to be disproportionately impacted by the new changes to care charging enshrined in the Health and Care Act 2022[18].

3.3.11 The recent amendment to the Care Act 2014 that only ‘out of pocket’ expenditure on social care that will count towards the cap, means those in the means-tested system, who contribute to part of their care costs but cannot afford to cover them in full, will not benefit from the cap until they have paid £86,000 out of their own pocket. Unpublished research by Sense has found that this will mean that some disabled people will now never meet the cap - despite spending 80 percent of their income on care costs.

“Social care is underfunded, and budgets have been slashed. There is a greater burden than ever before for people to fund their own care. I shouldn’t have to pay for the basic needs that everyone else has. Essentially, I have to pay to go to the toilet! If you tell someone they have to make a contribution every time they use the bathroom, what kind of reaction would you receive?”

C (33, Kent)

3.3.12 In some cases, social care charges for working-aged adults are taken out of their benefits such as Personal Independence Payments which are already insufficient to meet the extra costs associated with living with a disability.[19] In light of the ongoing cost-of-living crisis and the failure of the Government to provide sustained support and shield the public from increasing financial pressures the incomes of disabled people will continue to be stretched, creating greater pressure to pay for the care and support they currently draw on.

3.3.13 The recent cost-of-living support package announced by the Chancellor has thankfully acknowledged the costs faced by disabled people, but does not go far enough to make up for the rising costs many will face this year.[20] It is also still temporary, with the last payment being received some time in Autumn meaning many disabled people who draw on social care will still face difficult financial decisions into the future.

“It should be that the government allow for anyone who is shown to have low income or on benefits is not charged any care contribution and should stop disability benefits being used to be taken for care contributions, as individuals are needing their disability benefits more than ever.”

S, Buckinghamshire

3.3.14 The cost-of-living crisis is already set to disproportionately hit disabled people, as recent research from Leonard Cheshire has found that among disabled people:

-          25% have missed a meal because they could not afford it

-          28% have not been able to afford to keep their home warm

-          30% have had to ask for financial help from friends or family[21] 

3.3.15 Most worryingly, there are over 600,000 disabled people across the UK who we estimate to just £10 or less per week to pay for food and other essentials. All these financial pressures are having a considerable impact on the mental and physical wellbeing of disabled people, as over half (55%) say they feel anxious, depressed or hopeless about financial worries and problems. One disabled person has told us: “from just being able to survive with creative cost cutting, it has now become impossible”. They have had to resort to only eating foods that do not need cooking, wearing the same clothes many days to limit washing machine use and showering in cold water. Another said: “It’s either heat or eat. I live on pasta and noodles. No nights out, no fun. No money for equipment. Stuck at home and socially isolated!”

“I have to make a contribution and it’s very expensive and eats into my budget.”

E (34, Nottinghamshire)

“My contributions have gone up steeply. I have had to use my savings to cover pay for my care. I’ve had to reduce my care to fit my budget. Costs have gone up which have caused a lot of stress and upset.”

D (54, Derbyshire)

3.3.16 Disabled people have told us they are concerned about the rates that local authorities are charging for care packages as they feel they are not carrying out financial assessments in the correct manner, sometimes failing to take into account any Disability Related Expenses that disabled people declare during their assessment. This means that disabled people can be left with overly expensive care packages that they can struggle to afford, while also facing rising costs for energy, food, and other essentials. As a result, many disabled people are left facing a tragic choice between heating, eating and care.

3.3.17 Planning for a stable financial future is also difficult for working age disabled people who draw on care. The funding mechanisms preclude the ability to save adequately, and people are given no help to plan for the future. Widespread assumptions that disabled people can instead rely on living with parents is infantilising.

“Everyone wants to be able to live an independent life. It shouldn’t just be about the cheapest possible way to give care. It scares me to think of a future in a care home. I have a job, I’ve been successful, but I can’t afford my own home. I’m viewed as a burden on society and given the bare minimum to survive.”

C (33, Kent)

3.3.18 A final issue is that achieving quality of care for all disabled people who draw on social care, will require a skilled workforce that is adequately renumerated. Though recent social care reforms have promised £500m as part of the improved offer to the social care workforce, to deliver greater wellbeing support and an improved career pathway and training offer, to reduce turnover, this falls short of what is truly needed. Leonard Cheshire believes that long-term underfunding, recruitment, and retention problems in the social care sector have only been compounded by Covid, testing the endurance of even the most dedicated staff, increasing turnover, creating staffing issues and leaving the social care workforce without a sustainable long-term funding solution. Meaningful social care reform needs to invest in both the people drawing on care and the workers providing care.

3.3.19 At Leonard Cheshire, we believe there must be funding available within the system to ensure the care workforce is rewarded and strengthened with a new deal for care staff and fair remuneration. Whilst we welcome the introduction of the Real Living Wage for adult social care staff in countries like Scotland and Wales, greater funding must be made available to achieve pay parity with NHS staff and alleviate the workforce challenges in social care.

3.3.20 Further investigation of why disabled people are not consistently getting choice and control over the care they draw on, could deliver a number of recommendations that are actionable in the short-term including: (1) better training for social workers conducting social care assessments; (2) recommitments from Local Authorities to provide disabled people with personal budgets to provide their own care and (3) support for Local Authorities to develop the information on their local care offers.

3.4 What effect has the COVID-19 pandemic had on adult social care?

3.4.1 Disabled people have been disproportionately impacted at all stages of the pandemic, especially those who draw on social care. Early in the pandemic with the suspension of the Care Act, 2014, the Coronavirus Act set out the removal of disabled people’s established rights to social care. The changes to the duty to meet the eligible needs of disabled people and their carers were flagged as particular concerns by Leonard Cheshire during 2020.
What is of ongoing concern now is that many disabled people have told us that the reduction in care and support that began at the first lockdown, has not returned.

“My support hours have been reduced because I can't go anywhere because of lockdown. I’m very worried that after this is finished, my local authority will reassess me and say these reduced hours are adequate to cover my needs, leaving me permanently unable to access the community and isolated.”

Response to Leonard Cheshire survey conducted from April – June 2020

3.4.2 Through the suspension of the Care Act, 2014, the Coronavirus Act, while active set out the removal of disabled people’s established rights to social care, via changes to the duty to meet the eligible needs of disabled people (Section 18) and their carers (Section 20) are of particular concern. We have seen that these provisions had considerably negative consequences in what is an already severely overstretched sector, placing increasing pressure on care providers like Leonard Cheshire trying to preserve delivery of essential services. In some cases, this led to an erosion of disabled people’s rights or support when these are needed most, as 55% of disabled people told us they experienced changes to their care support in the early stages of the pandemic.

3.4.3 Polling conducted on behalf of Leonard Cheshire earlier this year has found that being left without adequate care remains a common experience for the majority of disabled people over the last year:

-          73% have been without social care at some point in the past 12 months

-          46% of those without adequate care were without care at least once a week

These reductions in care and support have also had considerable additional impacts on disabled people:

-          49% have experienced a negative impact on their mental health

-          44% have felt isolated or lonely

-          32% feel their physical health has been impacted[22]

3.4.4 Social care for many disabled people during the pandemic, if available, was in many cases no longer person-centred and suited to their needs. We have seen cases where local authorities were more likely to place disabled people in settings inappropriate to their needs in order to save money during the pandemic. Instead of specialist disability care support (typically costing c£1200/ week), disabled people have been increasingly likely to be placed in care homes for the elderly (costing c£600/week).. We have also seen situations where disabled people were placed in a social care setting where their needs would, as standard, entail receiving primary care nursing support. Placing people in inappropriate care settings, especially with very little notice, means that local authority staff do not have the required skills and training.

3.4.5 The government was also slow to start talking about ‘reasonable adjustments’ in relation to social care policy. This should have been there from the start, as it is the law, enabling providers to adjust care regimes in relation to the individual needs of the people cared for. Providers were best placed to recognise those who most needed the adjustments, however the government’s guidance for care homes did not engage sufficiently and early enough with the Mental Capacity Act 2005 or with the Equality Act 2010 to address these issues.

“The lack of support I have received has not helped with my employment prospects. I would like to work or do some voluntary work but there is no support.”

S (42, Cambridgeshire)

3.4.6 The reduced levels of care and support as a result of changes during the pandemic means that social care is not working as the enabler it should be for disabled people to achieve goals such as entering employment or volunteering. This is particularly concerning as research from Leonard Cheshire has highlighted the potential scarring effect of the pandemic on employment opportunities for disabled people, especially young people, 89% of whom have had their work impacted by the pandemic.[23]

3.4.7 The social care workforce as a whole has been hit considerably by Covid-19, which has impacted on the levels and quality of care that disabled people receive. As a care provider, Leonard Cheshire has experienced challenges with staff recruitment and retention during the pandemic, compounded by the introduction of all staff in our care homes to be mandated to be double vaccinated against Covid-19. We lost 3% of our social care workforce due to the government’s mandatory vaccination policy. Although this is a much lower figure that the 10% anticipated, the policy resulted in significant amount of staff time being invested in information sessions and support for staff to book their vaccines, as well as time to recruit new staff to backfill the vacancies left by staff exiting Leonard Cheshire.

3.4.8 The LGA estimated that additional staffing costs due to the pandemic to be £1.018 billion from the early stages of the pandemic to the end of September 2020.[24] Leonard Cheshire has also incurred extra staffing costs due to the need to recruit agency workers to cover staff absent from work who are self-isolating. We have also experienced high staff turnover in some of our services, with staff choosing to leave the social care sector for jobs in retail and hospitality. Skills for Care estimate that there are now 105,000 vacancies in social care.[25]

3.4.9 Finally, the Government’s recent ‘Living with COVID-19’ strategy threatens to place disabled people who draw on social care at continued risk from Covid, rather than ensuring that risk can be managed effectively and safely. The withdrawal of free asymptomatic testing, is of particular concern for disabled people who rely on informal care support, as this is a vital tool in helping protecting themselves, and others – current provision must be expanded to meet this need. Free asymptomatic testing provision must also remain in place for those who are clinically extremely vulnerable to Covid-19.[26]

4. Putting co-production at the heart of care

4.1 To what extent are the voices of people who draw on care and support and carers shaping the design and delivery of social care, irrespective of their age or circumstances? If these voices are not sufficiently heard, what is the impact of this on those who draw on care and support and carers?

4.1.1 The voices of disabled people who draw on social care are not heard to the extent they should be, when it comes to meaningful co-producing the care they receive. The Care Act 2014 defines co-production as the following: 'Co-production is when you as an individual influence the support and services you receive, or when groups of people get together to influence the way that services are designed, commissioned and delivered'.[27]

4.1.2 However, many disabled people have highlighted that though they may be able to influence the care they receive, the choice offered is very limited in terms of the support available to them. This is often because discussions about care don’t begin from a position of shared power and control, but rather from a negative position where disabled people feel they are faced with costs and seen as a burden rather than an equal partner in designing their social care and how it is delivered.

“There is too much emphasis on what I can’t receive and how much it will cost. I know there is a budget, but the focus should be on listening and not spending. I feel like I am treated like a second-class citizen.”

S (42, Cambridgeshire)

“I feel rather than drowning us with red tape, social care should be making life as uncomplicated as possible for us. So that we can look for opportunities to engage in activities, education and employment that interest and inspires us.”

D (54, Derbyshire)

4.1.3 One participant in our research, quite clearly captures what meaningful co-production means for disabled people: “Co-production, co-design, and delivery of services. Social care should give people what they need in a timely manner. Involve disabled people from design to delivery!” The need for disabled people to be central to policy making decisions within the social care system was also paramount among those we spoke to: “Scrap the one size fits all system and re-design a new system with and for the people who use it.”

4.1.4 It is concerning therefore, that the voices of disabled people have not been adequately listened to in policymaking as part of the recent social care reforms. This is despite over a quarter of a million working-age disabled adults currently drawing on social care, and almost half (49%) of local authorities’ expenditure on social care being spent on this group.[28]

4.1.5 The Government’s recent joint white papers ‘People at the Heart of Care’ and ‘Joining up care for people, places and populations’ both highlight that person-centred care is a key theme running through their shared vision, yet both make only fleeting reference to the principle of co-production. The sole mention in the social care white paper states that “embedding innovation… requires consultation, engagement and co-production with people who need support…”.[29] This could be seen to suggest that the place for co-production is reserved for design and delivery, rather than being central to strategy and policy making.

4.1.6 People who draw on care are the real experts in their own care, from how it should be delivered in the here and now, to what the future of social care should look like. Therefore, it is concerning that a new 10-year vision for the future of social care has been developed without a comprehensive consultative exercise with disabled people who draw on social care to shape that overall vision.[30] It is essential that people who draw on care co-produce the implementation plans that will make the Social Care White Paper a reality.

“The system is intimidating and impregnable, designed by people with a different perspective to me! It seems to concentrate purely on the functions of surviving and there is no consideration for other things in life that hold value such as socialising and being with other people”

T (details withheld)

4.1.7 Changes to social care charging under the Health and Care Bill will have future implications for disabled people who begin to draw on social care for the first time, and also for those who currently benefit from care. There has been a lack of clarity on what these changes will mean for working-age disabled people, though there has been widespread vocal concern from charities, including Leonard Cheshire, that working-age disabled people are disadvantaged by the new funding model. The Government’s recent Impact Assessment on the social care cap, for example, based its analysis of how the changes to charging may impact working-age disabled people on data almost a decade old (the 2012-2014 Wealth and Assets Survey).[31]

4.1.8 The largest reason for working-age disabled adults drawing on social care is for support with a learning disability (46%).[32] This means that many people would benefit from easy-read information on what these charging reforms mean for them, for local authorities and providers to be able to develop this effectively the guidance they receive must be clear and have a greater focus on working-age disabled adults. At present, the draft operational guidance does not adequately lay out what does and does not count towards the cap, as well as the mechanisms by which charging will work in practice.[33]

4.1.9 Rather than the Government amplifying the voices of disabled people as these visions and strategies were being developed, ensuring these reforms were truly designed to benefit them and would be communicated in an inclusive and accessible manner, many disabled people are left in the dark as to what their future care journeys will look like. This is particularly concerning as disabled people’s care journeys are often longer and more complex than older adults.

4.2 It is often difficult for people who draw on care and support and carers to exercise choice and control if they do not know what good support looks like or what kinds of care and support might be available. What information and support could be helpful to address this and how could it be made available more easily?

4.2.1 Working-age disabled people are not consistently getting choice and control over the care they draw on and co-production via personalisation of care must be at the heart of reform going forward.

4.2.2 Disabled people have told us that much better quality, accessible information should be available to help them navigate the social care system. Importantly this information should help to inform, but also empower disabled people so that they can have a positive vision to refer to when making decisions about their own care, but also challenging the care and support they receive if it falls short of this, based on a knowledge of the rights they hold.

“Finding the right people to deliver your care package is a hard slog. There needs to be more support for newcomers to the system.”

T (details withheld)

“There needs to be a central source of information (maybe a booklet) to help people understand their options. This would include points on how to access equipment too. It would make the system easier for people to understand so that people can make informed choices about their care, this would empower people. It would also help with expectations of what care looks like.”

F (53, Shropshire)

4.2.3 The fragmented nature of social care commissioning and delivery across the country can mean that it is a postcode lottery as to whether the information available on social care within a given local authority, is comprehensive and helpful for disabled people. But this should not prevent action on improving information and support available to help disabled people and advocates, such as friends and family, to navigate the social care system.

“I also feel that there should be more consideration for those that are life partners, family members and friends of someone who needs social care and advice and guidance for them to encourage and support as much independence as possible.”

D (54, Derbyshire)

4.2.4 The commitment in the social care white paper to develop a national website to inform people of social care charging reforms, alongside testing and developing ways to help people navigate their local social care system, is a positive step in addressing this, but much more can be done. Disabled people have told us they have faced accessibility issues in assessment processes and not being listened to by staff. Greater support is needed in order to help people navigate what can be a challenging system, that unfortunately can leave people worn down and left with inadequate care and support.

4.3 What does truly co-produced care look like for younger and for older people with differing challenges and needs? Have you got any good examples to share?

4.3.1 Real co-production must happen at all levels; individual, service, and strategic. Truly co-produced social care means that disabled people can draw on care and support that is person-centred, tailored to their individual needs and circumstances, and enables them to “thrive” and not just “survive”.[34] Care that is accessible, at the hours they need, and works from the start.

4.3.2 Disabled people have told us this means being able go to work, see family and friends, keep fit, gain qualifications, and participate in a range of hobbies and leisure activities.

4.3.3 The Government has recently committed to investing £150 million in a programme of digital transformation social care.[35] Part of this programme’s focus is deeply needed and welcome, in delivering long overdue upgrades to broadband and data collection and storage technology in residential care settings. Other parts, however, show a lack of ambition and strategic vision in leveraging technology and innovation to increase possibilities for quality co-produced social care. A key government target for care tech is to have 20% of care homes with care tech to prevent falls by 2024[36], but there is also so much more that mainstream technology can do to for disabled people, in delivering greater choice and control in the care they draw on.

27 May 2022