Chapter 6: Independent living: “Making It Real”
300.This chapter looks at how, if the adult social care system optimised independence and offered appropriate alternatives and choices for people who draw on care, the situation of unpaid carers could in many ways be transformed. The solutions for independent living, including direct payments, adaptable and appropriate housing, and the better use of enabling technologies, are all within reach with investment and political determination.
301.Much of this chapter emphasises the need to make what exists already to support independent living work better and universally, rather than being confined to instances of local good practice. In many cases, this means putting the choice of a personal assistant through direct payments within the reach of more people.
302.Alongside personal assistance, accessible and inclusive housing is key to enabling independent living. This chapter will explore the importance of finally grasping the necessity of providing adaptable, accessible and appropriate housing for people and families with care needs. Linked to this is the challenge to take advantage of the difference that new technologies can make in housing and in everyday life, to the benefit of disabled adults and older people, and unpaid carers.
303.For individuals who draw on care, the key question in this process is: ‘who’ and ‘how’. As one expert by experience told us:
“It is a universal proposition that if you want to live your own lifestyle and make your own choices about what you do, one of the prime ways of doing that is to have control over who provides your assistance and, importantly, how they provide that.”475
In other words, people with care needs must be able to choose whether they prefer to draw on care from unpaid carers, from paid carers, or from a mix of both. The first step towards exercising this choice is to have access to reliable advice and information about the options that are available.
Reliable advice and information: the key to achieving independent living
304.There are already options in place to enable people to have greater independence. We were repeatedly told, however, that the first barrier to accessing these options is the lack of information about them. It is local authorities’ duty under the Care Act 2014 to establish a service that provides information and advice relating to care and support to individuals who draw on care in their area,476 yet people with care needs are often not even aware of the fact that they have a choice when it comes to determining the nature of their care and support and of the relationships with their friends and families, because they are not proactively given meaningful information about possible alternatives. One expert by experience told us that a key barrier was “not knowing what was available from social care”: his local authority gave him “very little support” and he had to rely instead on advice from charities and others who were more familiar with the system. He told us: “It was a chasm of the unknown.”477
305.We were told by many witnesses that the best source of information for older adults and disabled people is their peers, and that the highest quality of advice and support comes from “people who have been there and done that.”478 One witness told us: “If you want a plumber, you ask your friend who you know has recently had a plumber because they know, so it is exactly the same principle.”479 People who draw on care are the best problem solvers for others who draw on social care; they know what solutions might work and what is unlikely to bring positive change, simply by living their lives and going through similar challenges.480 Some people sometimes need specific input from well-trained and expert health professionals, but everyone needs peer support.
306.In some places, people who need to find the right care are well supported. Local organisations led by people who draw on care include, for example, centres for independent living or disabled people’s organisations. These organisations are intended to provide advice, information and support to people with care needs, to enable them to achieve independent living, whether that is with or without the support of an unpaid carer. We visited a highly effective and popular disabled people’s organisation in London, where we were told that there were hundreds of examples of similar organisations helping their peers “get their rights”.481 Ian Loynes, the CEO of a centre for independent living called SPECTRUM, told us that peer support is “critical” to help people be informed, and he described his work as passing on “the knowledge and experience of how to live independently to others”.482 Adolf Ratzka, the father of the independent living movement in Sweden, who created the first Swedish peer-led organisation in 1984, described to us how members would help each other prepare for assessments:
“We trained each other in defining our needs in sessions for preparing ourselves for the needs assessment … We all went through these processes to defend our own needs assessments to get a reasonable evaluation of what someone needed in terms of the number of assistance hours so that they could convincingly convey that to the assessors of the Social Insurance Fund.”483
307.In 2009, the Health and Social Care Independent Living Bill [HL], a Private Members’ Bill, was introduced in the House of Lords, which proposed to make it a duty for every local authority to secure the availability of “an appropriate and sufficient range of independent advocacy services for disabled persons.”484 The Bill never received Royal Assent. Witnesses told us that the current situation is far removed from what it had set as an objective. Mr Loynes told us:
“I have never seen a commissioning document that places some value on the principle of informing, peer support and making sure that people have informed choice about how they choose to live their life and get the help they need in a social care setting.”485
Enabling access to peer-led organisations, therefore, is currently not a priority. Instead, the situation has got worse. Many of these organisations have lost “massive amounts of funding” over the last decade486 or even ceased to exist. As a result, one witness described to us how peer-led organisations “are being decimated.”487
308.If disabled people and older adults are to have equal access to peer-led organisations, there needs to be a dedicated strategy to bring back to life the objective laid out in the Health and Social Care Independent Living Bill, and ensure that every local authority commissions one or several peer-led organisations as part of its adult social care strategy.
309.These organisations must be seen as a ‘critical friend’ that is independent from the local authority to ensure that the advice and information provided are truly needs led, instead of financially led.488 There needs to be scope for these organisations to challenge the assessment process and the level of provision of support given by the local authority where this is necessary. Witnesses warned us, however, that there is a risk, from the moment that a local authority is funding an organisation, that the funding is withdrawn if the organisation becomes a source of challenge to the council, which ultimately would be counterproductive.489 Only total independence will guarantee a level of protection against the risk of intimidation and the withdrawal of funding. One witness recommended that one way forward would be to base commissioning and funding decisions on the feedback provided by receivers of the organisation’s services, rather than on the views of the local authority on the effectiveness of the organisation.490
310.Under the Care Act 2014, local authorities have a duty to provide information and advice to residents about care and support. The Government should enable local authorities to extend local support to those who need advice and information because they have care needs or provide unpaid care. This should be done through specific funding to commission peer-led independent organisations over at least a three-year period to enable innovation and capacity building.
Empowering the individual: expanding direct payments and personal assistance
311.The one scheme that is universally and currently available to enable disabled adults and older people to live independently, direct payments, has so far failed to live up to expectations.
312.Direct payments mean that, instead of receiving care services that the local authority has arranged, individuals with care needs are given payments that they can use to organise their own care. These payments are tailored to the amount of money their needs have been assessed to cost. The major difference they bring is that they can be used to hire personal assistants, who can be employed directly or indirectly by the person, so that the person controls the ‘who, when, what and how’ of how care is delivered.
313.Direct payments are used in several countries. In Sweden, for example, the legislation that enables direct payments and personal assistance was introduced in 1993, as the Independent Living movement grew across the country. Mr Ratzka told us that the uptake of direct payments and personal assistance once the legislation was implemented was “incredibly fast”: “so many people wanted to have the scheme, so many people had been marginalised, kept at home or in institutions, and had not been able to be part of the community,” he said.491
314.In Australia, a National Disability Insurance Scheme was introduced in 2013 to provide funding directly to eligible people with a disability, to enable them to pursue the support and services they need.492
315.Direct payments have the potential to make a significant difference. Experts by experience agreed that direct payments and personal assistance are currently the most effective way to achieve independent living. Mr Loynes, for example, told us that while he feels that care and support provided by his family will never enable him to live on his own terms,493 the PA model of care is empowering. “I employ my PAs and therefore I can dictate what they do. They get paid for what they do and there is a proper relationship there, not a kind of lopsided relationship.”494 Another witness told us that the PA model enabled him to train people up to the way he likes to live and the things he likes to do, allowing for care and support that is much more tailored to his personal life.495
316.There are many indications from the evidence we received and the broader literature to suggest that direct payments can bring greater choice and control, and that this can help some people achieve more ordinary lives.496 Mr Ratzka also pointed to the fact that the PA model of care has enabled him to contribute to society far more than if he received institutional services: he has been able to move from Germany to the US to be educated, completed a PhD, then moved back to Sweden to carry out academic research. “Personal assistance has given me a rich and fulfilling life. It has given me the ability to contribute to society,” he concluded.497
317.However, there remain cultural and practical barriers which stop this being the case for everybody. For instance, one study suggested that while direct payment users appreciated the control conferred by budget ownership, in practice for many it did not translate into improved living arrangements.498 People’s experiences can also vary in different parts of the social care system. For example, some older people may receive support which has been reduced to the bare minimum, so that it is often not possible to do anything other than meet basic needs, whether the person has a direct payment or receives a direct service. Moreover, widespread provision of advice and information by local authorities to recipients is crucial for the success of direct payments.
318.Economic evidence is also patchy, making it difficult for the Government and local authorities to invest in such ways of working with full confidence. It is difficult to estimate the cost and benefits of direct payments and personal assistance, because of the need for counter-factual evidence as to what the alternatives might have cost; but as one witness argued, “people who make an informed choice will have better outcomes and be less expensive for the state to look after when things go wrong.”499 We therefore call for a cost-benefit analysis of independent living, to give future governments the evidence they need when devising future policy in such a crucial area of practice and of people’s lives.
319.For many years, it has been the policy of successive governments to expand direct payments and the PA model of support. As early as 1989, the BCODP Independent Living Committee was set up and initiated the Direct Payments campaign, with the objective of changing the legislation to make it easier for local authorities to establish direct payment schemes.500 In 1997, after the Committee published its report on the efficiency of direct payments, the Direct Payments Act was implemented, allowing local authorities to make payments to individuals to enable them to secure the provision of care services.501
320.Since then, direct payments have found growing political support. Today, direct payments are described by Government and policy makers as the most desirable solution for people with care needs. The statutory guidance for the Care Act 2014 states that direct payments are “the Government’s preferred mechanism for personalised care and support.”502 The Government’s 2021 White Paper also included a commitment to ensuring that direct payments are understood and encouraged across the NHS, local authorities, care providers, voluntary and community groups, and the wider sector.503 Box 7 shows some examples of best practice by local authorities in relation to direct payments.
Box 7: Direct payments example of best practice: Hammersmith and Fulham Council
|
In 2018, an independent review carried out by an organisation run and controlled by disabled people, looked at direct payment support in the borough and made several recommendations to improve things. Residents who use direct payments have worked with the council to find new ways to support better use of direct payments in response to the report’s recommendations. Work has included:
|
Source: Hammersmith and Fulham Council, ‘What Are We Doing?’: https://www.lbhf.gov.uk/councillors-and-democracy/co-production/what-are-we-doing [accessed 28 September 2022]
321.Despite these efforts, the take-up of direct payments remains low. Only a quarter of eligible individuals use them. Data from NHS Digital shows that in 2020/21, the proportion of people who use services who received direct payments stood at 26.6%.504 The crucial barriers, in addition to a cultural context which makes genuine choice and control difficult to exercise for disabled adults and older people, seem to be the lack of accessible information, the lack of support for managing the day-to-day employment of PAs; and the sheer shortage of PAs.
322. We were told, in effect, that one of the first barriers to accessing direct payments and personal assistance is the lack of knowledge and access to information about this option.505 As we have already suggested, this can be resolved in part by expanding the availability of peer-led organisations, many of which actively work to support other disabled adults and older people to understand and implement their own PA scheme. According to Mr Loynes, peer-led organisations are the most effective way to normalise personal assistance and bring the model to more people. He argued that the current number of individuals who receive personal assistance is largely due to “word of mouth and background knowledge,” rather than to any official promotion campaign about what the system is.506
323.These organisations can also support older adults and disabled people in overcoming some of the barriers they face while setting up a PA scheme. For example, we were told that for many people, the perspective of becoming an employer of personal assistants, and of managing human resources-related issues, can be overwhelming. In addition, the service provided can be unpredictable. As Mr Loynes explained, if a PA fails to turn up in the morning because of an emergency, the impact on the person who needs their support can be traumatic.507 In many cases, peer-led organisations can help with these issues. SPECTRUM, for instance, helps members with recruiting staff and dealing with human resources, while enabling the older or disabled person to have control over who they are employing.508 This, however, is not universal practice. Another barrier is the unnecessary and burdensome amount of monitoring information recipients are required to provide in some local authorities.
324.However, the overwhelming problem made forcefully and consistently seems to be the difficulty of recruiting PAs and retaining them. We were told that there is a severe lack of supply of personal assistants, leaving many people without critical care and support, and affecting their mental and physical health. A survey carried out among 1,000 people using personal assistance between 2020 and 2022 showed that 77% of respondents have found it more difficult than before to recruit a PA. The main reason for this, according to the survey, is that people are taking jobs with better pay.509
325.The report also found that people are finding it difficult to recruit PAs who have the appropriate skills for the role: 59% of respondents said that they were finding it harder to find the right PAs for them.510 This echoes what we heard during a Committee visit to a disabled people’s organisation in London, where we were told that many of the people who come to the sector do not have the appropriate training or values.511 In addition to technical skills related to care and support, being a PA requires empathy and being prepared to understand how a person likes to live their life and adapt to their own terms. It is a profession that involves crucial personal skills and finding candidates who have these skills and values is becoming increasingly difficult for people looking to recruit a PA. This is compounded by the fact that most debates about the current challenges faced by social care focus on care workers in domiciliary and residential care, which means that the difficulties of recruiting PAs have been largely invisible. Best practice in recruitment is described in Box 8.
326.Another high barrier is that not enough is known about what PAs do and what their role consists of. One witness told us that, while many people would currently never consider becoming a PA, it is in reality “quite flexible” and different from a usual “nine-to-five job”.512 Another user of personal assistance argued that if personal assistance were to be re-established as a valuable and highly skilled role, “many will intuitively see that as a vocation, as a career.”513 Increasing people’s awareness of the nature and value of personal assistance, therefore, could attract more people into the profession. More, however, is needed than publicity. A precursor to this change would be to re-evaluate the pay and working conditions for personal assistance; as well as to ensure that PAs have appropriate training, so that they understand what providing personal care and support involves. This should be prioritised as part of the workforce strategy that the Government should put in place, as we recommended in Chapter 4.
Box 8: ENABLE Scotland: Best practice in enabling the recruitment of personal assistants
|
ENABLE Group provides self-directed health and social care to people in Scotland, through the PA model. ENABLE supports individuals in planning and designing the services they want, so that they can build their own bespoke team of PAs. The CEO of ENABLE Theresa Shearer told us that the main barrier to implementing a PA scheme is the lack of confidence that individuals and families have when it comes to being a recruiter and an employer. The organisation therefore runs an internal recruitment agency that facilitates the recruitment and onboarding processes for PAs. The agency works to people’s demands and criteria to ensure that the personal assistants hired are tailored to each individual’s needs. In parallel, the agency ensures that it attracts the right people into the profession. Individuals are recruited for their values and experiences, but not necessarily their social care experience. The emphasis is placed on their soft skills. ENABLE also pays PAs more than the Scottish living wage. According to Theresa Shearer, one-third of the organisation’s workforce earns between £11 and £12 an hour. ENABLE’s model, therefore, ensures that older adults and disabled people can recruit PAs that are right for their individual needs, without worrying about the recruitment process or human resources-related challenges. It also means that those joining the recruitment agency are driven by the right motivations, and that they have the appropriate soft skills to be a PA. This in turn enables personal assistance to become more attractive as a profession. |
Source: Q 104 (Theresa Shearer)
327.Normalising direct payments and personal assistance needs to become more than a policy pledge. The mechanisms exist to drive direct payments into the mainstream and to ensure that people who wish to achieve independent living without the support of unpaid carers, whether by choice or because they do not have friends or family members available to provide care and support, are aware of the options that are available to them. As one expert by experience told us, it is necessary to ensure that families and individuals who require support are given a free choice in how it is provided. This means that:
“The options given are clear, and that includes the option of saying, ‘Yes, I live with my parent, parents or partner but I don’t want them to have to provide X amount of care; I would like my care package to reflect this,’ without a battle.”514
328.This is only possible if there is an easy access to direct payments and personal assistance. More needs to be done, therefore, to understand how direct payments and personal assistance can be made easier and smoother to set up, drawing on examples of best practice such as those described in Box 7.
329.As part of its adult social care workforce plan, the Government must commission an independent review of the pay and working conditions for personal assistants.
330.The Government should set aside some of the specific funding identified in the White Paper to develop innovative models to make direct payments and personal assistance easier to access and manage, and to simplify the recruitment of personal assistants.
The importance of accessible and inclusive housing
331.Accessible and inclusive housing is central to enabling independent living. As one expert by experience told us: “When the disabled people’s independent living movement first listed the conditions that need to be in place in order for disabled people to choose how and where they live, suitable housing was at the top.”515
332.General Comment No. 4 of the UN Committee on Economic, Social and Cultural Rights enshrines a human right to adequate housing.516 However, for people with care needs and disabilities, this human right has never been within reach. For decades the lack of accessible and inclusive housing, the failure to invest strategically and sustainably in ‘Care and Repair’ schemes and the failure to plan at market level for an ageing society which wants to remain independent for as long as possible and ‘age in place’ and therefore needs housing which is flexible and adaptable, has not been a significant housing priority. The voice of disabled adults and older people has simply not been taken into account when housing is planned or designed. Too often, people having to make a sudden choice about where to move to are unaware about the alternatives to institutional care offered by supported housing or adaptations to existing homes.517
333.The Government has started to address the problem. The Disabled Facilities Grant is available for disabled people who wish to make changes to their home, although this can be a lengthy process—changes require council approval and only need to be completed within 12 months of the grant being approved.518 The 2021 White Paper recognised the importance of making homes fit for purpose, including plans to encourage more development of supported and retirement housing and extra care schemes, and made a funding commitment of £300 million to help health, local authority and other partners to plan strategically across housing, health and care to meet the needs of local communities.519 In June 2019, the Government also published guidance for councils on housing for older adults and disabled people.520 This is but a start.
334.At transitional points, particularly in relation to discharging patients from hospital into appropriate and safe accommodation, one of the greatest failures in health and social policy has been the neglect of housing as a key determinant of what is necessary and possible. This is exacerbated by the lack of affordable, accessible and inclusive housing and supported accommodation.
335.This problem will only get worse due to the UK’s ageing population and increase in people drawing on care. Investment is needed to ensure that housing stock is adaptable and safe so that people can remain independent.521 The Welsh Government, for instance, has announced a £181.5 million Housing with Care Fund to increase the stock of housing to meet the needs of people with care and support needs.522 Unsuitable housing can result in residents being trapped at home, the indignity of not being able to live independently, poorer mental health, a reduction in the ability to work and feelings of social isolation and anxiety.523 Without accessible and adaptable housing, disabled adults and older people risk facing not only discrimination and disadvantage in housing, but also isolation and poorer health.
336.Moreover, according to the Centre for Ageing Better, across the UK in 2017 21% of homes occupied by someone age 75 or over were classed as “non-decent.”524 The privately rented sector is particularly challenging: the Equality and Human Rights Commission found that one in three disabled people living in the private rented sector, one in five in social housing, and one in seven in their own home, were in unsuitable housing.525 Likewise, 50% of Local Plans do not have any provision for retirement housing and only 31.5% of the new homes planned between 2020 and 2030 will meet accessibility standards. Provision varies regionally: in the West Midlands, there are no accessible homes planned.526 Guy Harris, Director, AccessiblePRS, said that the disabled facilities grant—given by councils to disabled people to make changes to their home—while “wonderful” in theory, in practice it is “a postcode lottery”.527
337.Witnesses told us that the lack of choice for individuals with care needs when it comes to accessible and inclusive housing can, once more, be linked to the discriminatory narrative that surrounds older adults and disabled people in wider society. Mr Harris pointed to “the narrative that accessibility and disability are a very foreign concept that has no relevance to our lives”.528 In other words, building housing that is accessible for older adults and disabled people is not seen as a priority, but as an issue that only affects others. Mr Harris highlighted how “strange” this is, since older age and disability are likely to affect most people.529 Moreover, there is a need to consider appropriate housing for young adults who desire a choice of who they live with and where. They require the option of living with people of a similar age, with similar interests, rather than living in the same homes as older people. This goes back to the challenge of invisibility discussed in Chapter 2.
338.Social housing is particularly pressured, with long waiting lists. Over one million households are waiting for social homes. Last year, 29,000 social homes were sold or demolished, and less than 7,000 were built.530 Witnesses emphasised that the Government should increase availability of affordable and social rented housing.531
339.Moreover, systems used to identify disabled people’s requirements and deliver accessible houses are weak. Data again is partial and inadequate for good decision making. Only 12% of local authorities rated the data available to them on local disabled people’s needs as ‘good’ or ‘very good’.532 One notable exception—to which other councils should look—is Hammersmith and Fulham Council, which has produced a disabled people’s housing strategy, which outlines objectives of co-production; improvement of access to housing information; improvement of the council’s services as a landlord for disabled residents; and identification of ways to increase the supply of accessible and affordable housing.533
340.Information on the accessibility of properties is particularly poor in the private sector. Estate agents, for example, do not typically provide information about the accessibility of private lets or houses for sale.534 Among the advice we received was that councils should:
- provide independent sources of information and advice for people on housing, support and care services for people with care and support needs and their carers;
- develop local and regional registers of existing adapted properties across all tenures which should be part of the information available, help to access this and match households with suitable housing opportunities; and
- combine this information with hubs to help disabled adults and older people access help to repair and improve their homes and get suitable adaptations. 535
341.Few local authorities across Britain set targets for accessible housing and developers are reluctant to build accessible houses, as they see them as cutting profit margins. Developers are more likely to negotiate to the lowest allowable standards.536 As put by Mr Harris, a “developer that has bought land is doing what they know best to ensure profit. Getting developers on side has to happen at policy level, and that is a Government issue”.537
342.One exception to this trend is London, where higher accessible and adaptable standards have been the default for many years. From 2004 to 2016, the London Plan included requirements for developers in the capital to build homes to the Lifetime Home standard—a concept developed in the early 1990s by a group of housing experts, and which included 16 design criteria that could be applied to new homes to ensure that they were inclusive, accessible, adaptable, sustainable and good value.538 In 2016, following the Government’s review of housing standards, the London Plan was reviewed to reflect these new standards. The 2021 plan requires all new residential dwellings to be accessible and adaptable, as per the M4(2) standard described below; and at least 10% of new dwellings to be wheelchair accessible.539 However, an overall lack of affordable social housing in London means that, even if standards are appropriate, supply is still an issue.
343.Ad hoc solutions, discretionary guidance, and the goodwill of developers are not enough. There needs to be leadership to ensure that minimum accessible housing standards become the norm not the exception. The most common and persuasive proposal is that the Government amend requirement M4(2) of Schedule 1 to the Building Regulations 2010, so that it is no longer an optional requirement, but instead the mandatory minimum standard for the design and delivery of all new housing.540 M4(2) states that, where developers choose to adhere to the requirement, “reasonable provision” must be made for people to gain access to and use a residence and its facilities. These should be sufficient to meet the needs of occupants with differing needs, including “some” older or disabled people, and to allow adaptation in case of changing needs.541 Mr Harris emphatically stated that “nothing will change until the Government mandates minimum accessible housing standards.542 We therefore welcome the Government’s statement in July 2022 that it will mandate this standard following a consultation543 and encourage them to urgently find Parliamentary time to do so.
344.Moreover, the M4(2) requirement should also be expanded to cover inclusive design. The focus of standards and guidance is often on older people and people in wheelchairs, to the exclusion of people with sensory impairments, learning disabilities or autism spectrum disorder.544 Recently the LGA published guidance for councils on considering and meeting the sensory needs of autistic people in housing, which includes guidance on how autistic people may respond to sound, sight, touch and smell.545 Likewise, the British Standards Institution has published guidance defining good practice relating to neurodiversity and the built environment, including residential accommodation.546 We commend these guidance documents and encourage their adherence by developers and councils.
345.One proposed solution we heard was that of collaborative housing, which is more available in other European and North American countries. However, it is increasing in popularity in the UK, for example with Housing 21’s programme of older persons’ cohousing development in areas of multiple deprivation in the West Midlands. Early findings of a study of cohousing indicated that collaborative housing models encourage a sense of community that engenders mutual support and residents “looking out for” each other.547
346.Better supported housing would also help alleviate the situation. Supported housing gives disabled and older people choice about their lives, enabling them to live in a home environment rather than institutional settings. Better supported housing would also remove the stress that would otherwise be on institutional care, such as care homes and respite centres.548 According to the Equality and Human Rights Commission, housing that meets people’s requirements will save on health and social care costs in the future, as well as considerably lowering the cost of adaptations when they are needed.549
347.Case studies show that when residents are given choices, such as who they want to live with or what they want in their individual kitchens, their quality of life improves.550 In order for the market to be able to deliver cost effective supported housing that also promotes independence, we heard that commissioners “need to be able to take a strategic overview rather than purchasing care and support based on short-term considerations of unit price.”551 Housing associations need to engage with commissioners to inform this strategic vision, to help them better understand local supported housing need and how supported housing can deliver cost savings and efficiencies. One route to engagement would be participation in local Health and Wellbeing Boards, for instance.552
348.The Government should follow through on its commitment to mandate minimum accessible standards so that all new build residential properties across all tenures meet standards of accessibility and inclusivity, including for sensory impairments, learning disabilities and autism spectrum disorders.
349.The Government must increase capital funding to secure a new supply of purpose-built supported housing and revenue funding for services to help people live independently, if they are to deliver the commitments set out in the Social Care White Paper.
350.The Government should introduce an accessibility and inclusivity standard for marketing residential properties for rent, requiring properties to be listed with accessible and inclusive characteristics.
Unlocking the potential of digital technologies
351.Digital technologies, especially in housing, have the potential to transform the lives of older adults and disabled people and to enable them to achieve independent living.553 This includes the use of smart devices, powered using artificial intelligence, big data, robotics and the Internet of Things.554 The COVID-19 pandemic acted as a catalyst for the use of technology by older and disabled people: for instance, 5,500 adults with learning disabilities gained access to tablets, data and support via the Digital Lifeline Fund.555
352.In its social care White Paper, the Government committed to invest at least £150 million of additional funding over the next three years “to drive digitisation across the sector, and unlock the potential of caretech innovation that enables preventative care and independent living.”556 If this funding is unlocked, it will be devoted to testing ideas, scaling any benefits and building the case for change. The Government also commited to producing a shared roadmap of priorities with local authorities, the voluntary and community sector, people who draw on care and support and their care networks.557
353.The challenge of unlocking the potential of technology, however, is two-fold: there is little awareness of the role of technology among commissioners and service managers in adult social care; and where there is, this understanding is limited. It fails to grasp the full extent of people’s needs and aspirations, and of technology’s potential to enable people to achieve these ambitions.
354.Around 60 years ago, technology-assisted living came in the form of traditional telecare technologies in supported housing and focused on managing risk associated with people living alone or discharged from hospital. Since then, technology has developed significantly, but the thinking on technology in care and housing is still risk-averse and focused on managing that risk.558 Dr Kate Hamblin, Research Fellow, Centre for International Research on Care, Labour and Equalities (CIRCLE), University of Sheffield, proposed that as there is a duty on local authorities to promote wellbeing under the Care Act 2014, there is an opportunity to reconsider what role technologies can play in accessible housing in supporting people with care needs. She said that “There is now a key driver for change, a key opportunity for change, aside from the advances in technology.”559
355.In addition, technology has switched from analogue to digital transmission. Much traditional telecare, such as pendant alarms and environmental sensors, use analogue phone lines, which are being decommissioned, and as a result those devices will not be reliable. They therefore need to be reconsidered. This presents an opportunity for local authorities, service providers and housing providers using traditional telecare to think about how to develop.560 While there are digital equivalents of old technology, such as a digital pendant alarm, there are questions around factors such as battery life and back-up, “so they are not quite as equivalent as perhaps they could be with some of the standards”. This forces users and providers of technology to “think more broadly about how we can use technology in ways that support well-being and independence as well as manage risk.”561
356.We heard that the key to taking advantage of these opportunities is personalisation—“giving people the ability to make those creative decisions, or to be facilitated to make those creative decisions where that is more challenging for them”.562 However, we were told that:
“The traditional local authority approaches to technology are not really aligned with this personalisation approach. It is the more traditional bulk buy, block contracts, a lot of pendant alarms, rather than finding out what the person would like to achieve and then trying to create a bespoke package of technology to do that.”563
While manufacturers have spoken to local authorities about personalisation, we heard that the response seems to be that local authorities “want everything in beige”.564
357.Local authorities should make use of their market-shaping duty under the Care Act 2014 to help shift the independent living technology market towards the aspirations, needs and requirements of disabled people and older people. This would require implementing co-production and the codesign of new technologies with disabled adults and older people, whereas currently there are limited opportunities for them shaping the design and delivery of technology-enabled care.565
358.Therefore, there is a “need to be more ambitious about the role technology can have in supporting people’s needs and desires”. Clive Gilbert, Policy Manager, Policy Connect, pointed out that many older people and disabled adults are already using technology “to do everything from connecting with friends to managing a team at work to booking theatre tickets”. Consequently, while disabled adults and older people “may use a different tech set-up”, the things they do with technology are not “radically different”.566 In reaching this ambition, it is important that technology is put in the hands of disabled people themselves to avoid “doing technology to people”.567
359.It is also not enough simply to provide the technology: older adults and disabled people need to have a full service. This includes installation, ongoing support, reassessment and troubleshooting. Technology on its own is therefore not the silver bullet that it is sometimes presented as.568 Technology can also bring challenges in consent, data processing and ownership insecurity, which need to be managed by the social care sector.569 Moreover, there can be too much focus on creating independence. We heard that while “independence is very important … technology could also be very helpful in terms of interdependence and connections.” Technology can try to reduce the person’s need to engage with other people, particularly the care workforce, raising “bigger questions about what it can do to connect people and to keep people engaged and well that way”.570
360.We welcome the Government’s committed investment in care technology and its testing and scaling of related ideas. The Government must ensure that any testing of ideas related to care technology is done in co-production with people with lived experience.
361.The Government should create a research and development network for the sharing of technological innovation between social care stakeholders, similar to the NHS R&D Forum.
479 Ibid.
481 Summary of Adult Social Care Committee visit to Real, 6 September 2022: Appendix 4
484 Health and Social Care (Independent Living) Bill [HL], clause 6(2)(b) (2009–10)
490 Ibid.
496 British Council of Organisations of Disabled People, Cashing In on Independence (1994) p 6: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/Zarb-cashing-in-on-indep.pdf [accessed 28 September 2022]; Jon Glasby and Rosemary Littlechild, Direct payments and personal budgets: putting personalisation into practice, 3rd edition (Bristol: Policy Press, 2016) and Catherine Needham. and Jon Glasby (eds), Debates in personalisation (Bristol: Policy Press, 2014).
498 John Woolham et al., ‘Do direct payments improve outcomes for older people who receive social care? Differences in outcome between people aged 75+ who have a managed person budget or a direct payment’, Ageing & Society, vol. 37, (2017), pp 961–984: https://www.cambridge.org/core/services/aop-cambridge-core/content/view/772F12193787151D336404176681E79E/S0144686X15001531a.pdf
500 Independent Living Institute, The Independent Living Movement in the UK (2003): https://www.independentliving.org/docs6/evans2003.html [accessed 18 September 2022]
501 The Community Care (Direct Payments) Regulations 1997 (SI 1997/734)
502 Department of Health and Social Care, Care and support statutory guidance (November 2022): https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance [accessed 8 November 2022]
503 Department of Health and Social Care, People at the Heart of Care: Adult Social Care Reform White Paper, CP 560, December 2021, p 16: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1061870/people-at-the-heart-of-care-asc-reform-accessible-with-correction-slip.pdf [accessed 28 September 2022]
504 NHS Digital, Measures from the Adult Social Care Outcomes Framework (October 2021) p 17: https://files.digital.nhs.uk/57/AB0038/meas-from-asc-of-eng-2021-ASCOF-report.pdf [accessed 29 September 2022]
508 Ibid.
509 Think Local Act Personal, The forgotten workforce: Recruiting and retaining personal assistants (July 2022) p 4: https://www.thinklocalactpersonal.org.uk/_assets/Reports/Personal-Assistant-Survey-The-Forgotten-Workforce.pdf [accessed 29 September 2022]
510 Ibid., p 8
511 Summary of Adult Social Care Committee visit to Real, 6 September 2022: Appendix 4
516 United Nations Committee on Economic, Social and Cultural Rights, ‘General comment No. 4: The right to adequate housing (art. 11 (1) of the Covenant)’, Sixth Session (1991) p 1: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=INT%2fCESCR%2fGEC%2f4759&Lang=en [accessed 27 September 2022]
518 HM Government, ‘Disabled Facilities Grant’: https://www.gov.uk/disabled-facilities-grants/eligibility [accessed 14 November 2022]
519 Department of Health and Social Care, People at the Heart of Care: Adult Social Care Reform White Paper, CP 560, December 2021, p 7: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1061870/people-at-the-heart-of-care-asc-reform-accessible-with-correction-slip.pdf [accessed 29 September 2022]
520 Department for Levelling Up, Housing and Communities and Ministry of Housing, ‘Communities and Local Government, Housing for older and disabled people’ (26 June 2019): https://www.gov.uk/guidance/housing-for-older-and-disabled-people [accessed 27 September 2022]
522 Welsh Government, Housing with Care Fund (HCF): Guidance 2022–2023 (May 2022): https://gov.wales/sites/default/files/publications/2022–05/housing-with-care-fund-hcf-guidance-2022–2023_0.pdf [accessed 26 September 2022]
523 Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018): https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
525 Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018): https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
529 Ibid.
530 Shelter, ‘Social housing deficit’: https://england.shelter.org.uk/support_us/campaigns/social_housing_deficit [accessed 1 November 2022]
532 Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018): https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
533 Hammersmith and Fulham Council, Disabled people’s housing strategy 2021 (February 2021): https://www.lbhf.gov.uk/sites/default/files/section_attachments/hf-disabled-peoples-housing-strategy-2021.pdf [accessed 29 September 2022]
534 Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018): https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
536 Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018), p. 8: https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
538 Mayor of London, The London Plan: Spatial Development Strategy for Greater London (February 2004) p 58: https://www.london.gov.uk/file/177530/download?token=tDX4jWVq [accessed 28 October 2022] and Habinteg, Accessible Housing Standards 2015 (November 2015) p 2: https://www.housinglin.org.uk/_assets/Resources/Housing/OtherOrganisation/Accessible-Housing-Standards-2015-WEB.pdf [accessed 28 October 2022]
539 Ibid., p 132
540 Written evidence from the Chartered Institute of Housing (ASC0127) and Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018) p. 11: https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
541 The Building Regulations 2010 (SI 2010/2214)
543 Department for Levelling Up, Housing and Communities, Raising accessibility standards for new homes (updated 29 July 2022): https://www.gov.uk/government/consultations/raising-accessibility-standards-for-new-homes/raising-accessibility-standards-for-new-homes-html-version [accessed 27 September 2022]
544 Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018) p. 44: https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
545 Local Government Association, ‘Considering and meeting the sensory needs of autistic people in housing’ (30 June 2020): https://www.local.gov.uk/our-support/sector-support-offer/care-and-health-improvement/autistic-and-learning-disabilities/autistic/considering-and-meeting-sensory-needs-autistic-people-housing [accessed 27 September 2022]
546 British Standards Institution, PAS 6463 Design for the mind: Neurodiversity and the built environment : Guide (September 2022): https://knowledge.bsigroup.com/products/design-for-the-mind-neurodiversity-and-the-built-environment-guide/standard [accessed 27 September 2022]
547 Written evidence from the Centre for Research in Health and Social Care, University of Bristol (ASC0037)
549 Equality and Human Rights Commission, Housing and disabled people: Britain’s hidden crisis (May 2018) p 7: https://www.equalityhumanrights.com/sites/default/files/housing-and-disabled-people-britains-hidden-crisis-main-report_0.pdf [accessed 29 September 2022]
551 Ibid.
552 Ibid.
554 Policy Connect and All-Party Parliamentary Group for Assistive Technology, Smarter Homes for Independent Living (28 April 2022): https://www.policyconnect.org.uk/research/smarter-homes-independent-living/fulltext [accessed 27 September 2022]
555 Department for Digital, Culture, Media and Sport, Impact assessment: Digital Lifeline Fund: Evaluation summary (24 March 2022): https://www.gov.uk/government/publications/digital-lifeline-a-qualitative-evaluation/digital-lifeline-fund-evaluation-summary [accessed 26 September 2022]
556 Department of Health and Social Care, People at the Heart of Care: Adult Social Care Reform White Paper, CP 560, December 2021, p 10: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1061870/people-at-the-heart-of-care-asc-reform-accessible-with-correction-slip.pdf [accessed 29 September 2022]
557 Ibid.
559 Ibid.
560 Ibid.
561 Ibid.
562 Ibid.
563 Ibid.
564 Ibid.
565 Ibid.
567 Ibid.
568 Ibid.
569 Ibid.