Much discussion of social care during the pandemic has focused on the elderly. But young people with learning difficulties have been particularly badly affected, both in terms of their health and loss of services.
Long-standing weakness in England’s system of social care, combined with policy mistakes early in the Covid-19 crisis, contributed to high infection and death rates among social care users. Since the pandemic began, there has been a 62% increase in deaths among people receiving domiciliary care compared with recent years and a 20% increase among care home residents. Media coverage and resulting policy responses have been focused on care for older people. Much less attention has been given to the effects on younger people with social care needs.
An earlier Economics Observatory article describes the social care system in England and its widespread failures. These generated inefficiencies even before the pandemic and made it harder to provide care and protect social care users when Covid-19 hit. As is often the case in both academic and policy work, the focus of the article was largely on older social care users, specifically those over the age of 65. This is despite half of all public spending through local authorities on adult social care being on younger adults, equivalent to £6.8 billion in 2018/19.
The single biggest group of younger adults receiving publicly funded social care are those with learning disabilities: 134,000 received support in 2018/19 in England. Over the course of the pandemic, it became clear that those with learning disabilities experienced disproportionately high Covid-19 mortality rates: data show that they were six times more likely to die of the disease than the general population.
This article considers the impact of the pandemic on those with learning disabilities – and how the current social care system may have contributed.
What support is available to younger adults with learning disabilities and how is it funded and organised?
State support available to people with learning disabilities aged 18 to 64 includes benefits in the form of cash transfers, government-funded social care and healthcare through the NHS.
As of the end of 2020, an estimated 165,000 people aged 25 to 64 and 281,000 people aged 16 to 64 in England received disability benefits in the form of cash transfers because they had either a learning disability or an autism spectrum disorder. These transfers are paid through the disability living allowance (DLA) or personal independence payments (PIP).
Eligibility is needs-based on the level of disability, and some of those with learning disabilities may not meet the criteria. For help with daily living, the maximum PIP someone could receive is £89.60 a week. In addition, those with learning disabilities and their families are often also eligible for other benefits, such as the employment and support allowance (ESA) and carer’s allowance (up to £114.10 and £67.60 a week respectively).
The social care system for younger adults is the same as for older people. Eligibility for publicly funded social care through local authorities depends on meeting a needs threshold and having assets under £23,250, not including family members’ income. The assessment of a person’s need for social care is separate from the assessment of whether they qualify for disability-related cash transfers. This is despite a great deal of overlap in the criteria.
There is a national framework on the needs thresholds for who qualifies for social care, but these can be interpreted differently across local authorities. As with older people, local authority social care funding can be used to provide a range of services, including personal assistants, home help, community services or residency in care homes.
Younger adults who use social care receive a greater proportion of their care in the community compared with those over 65 years of age. This includes using services such as transport, day centres and help with employment and volunteering opportunities.
For people with learning disabilities who do not apply for local authority funding, who do not qualify or who receive less care than they or their families would like, social care is given informally by friends and families, provided through charities or self-funded.
Work by economists on learning disabilities focuses mainly on children. Specifically, it addresses the impact of having a child with disabilities or developmental delay on the outcomes for parents (typically mothers).
Recent research finds that delay in early childhood development reduces mothers’ working hours, and that the effect is larger when the child is a teenager than in kindergarten (Lafférs and Schmidpeter, 2021). Earlier work shows that child disability tends to reduce mothers’ participation in the workforce (Power, 2001; Corman et al, 2005). As responsibilities for a child with learning disabilities do not end when the child reaches adulthood, these consequences are likely to continue.
How has the pandemic affected younger adults with learning disabilities and how has the government responded?
In the early part of the pandemic, the focus of the media and policy attention was on the death toll among older social care users. But over time, the impact on younger social care users, and particularly those with learning difficulties, has become more apparent.
In September 2020, QCovid (a coronavirus risk prediction analysis) identified those with Down’s syndrome as extremely vulnerable and showed an increased risk for those with all learning disabilities. Then in November, Public Health England released data showing that those with learning disabilities were six times more likely to die of Covid-19 than the general population. Finally, in February 2021, the Office for National Statistics (ONS) demonstrated that the risk of death involving Covid-19 was 3.7 times greater for both men and women with a learning disability compared with people of the same age without one.
The Care Quality Commission (CQC) published an interim report showing that, during the pandemic, ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) orders were placed on some people with learning disabilities without consultation with them, their loved ones or the people who support them.
Beyond Covid-19 itself, successive lockdowns have restricted the access that younger individuals have to both health and social care. A recent UKRI-funded survey found that 30% of family carers or paid support staff said that the physical health of the person they support had changed for the worse since the first lockdown. Almost all participants reported that community activities had stopped completely or had been reduced, and 89% reported the same for their day service.
In addition to the direct impact on young people themselves, there have also been effects on their family members who act as unpaid carers. In a Carers UK survey in April 2020, 70% of unpaid carers reported providing more care due to the Covid-19 outbreak and the majority (55%) felt overwhelmed and worried about burnout.
When the Joint Committee of Vaccination and Immunisation (JCVI) announced their vaccine priority groups in December 2020, older residents of care homes were put in the first priority group. This reflected the high rates of disease and death in the first wave. Younger adults in care homes with learning disabilities, of which there were over 23,000 individuals in 2015, were not included.
The main criterion used for prioritising vaccination – after care homes, and health and social care workers – has been age. Initially, only those with Down’s syndrome and severe learning disabilities were prioritised for vaccines, as part of group four. Those with mild or moderate learning disabilities were excluded. A so-called ‘postcode lottery’ developed, as some areas of the country decided to expand the vaccine offering by placing all those with learning disabilities in group six.
After further evidence of the risks faced by those with learning disabilities and considerable press attention, the JCVI guidance was updated in February. All people on the GP Learning Disability Register became eligible for a vaccine as part of priority group six. But this register is considered incomplete, with the NHS estimating that only around a quarter to a third of the estimated number of people with a learning disability are on a GP register.
NHS England released guidelines in 2019 to try to improve identification of those with learning disabilities, but coding is still imperfect and relies partially on the availability of GPs to update the register on a case-by-case basis. Without accurate information, it is hard to target interventions or help towards this group.
How has the social care system for younger adults contributed to the impact of the pandemic on those with learning disabilities?
Covid-19 has presented challenges to those with learning disabilities and their families, which are hard to overcome. In some cases, such as Down’s syndrome, learning disabilities are accompanied by physical co-morbidities that make people more vulnerable to the virus. It can be harder to maintain social distancing, especially when social care is often provided in group community settings.
Further, when people with learning disabilities get sick, it may be harder to ensure they comply with the care that they need, such as oxygen masks. These individuals experienced health inequalities and unmet need before the pandemic, but Covid-19 has highlighted several of these shortcomings in the health and social care services available.
First, state support for younger adults with learning disabilities is a complex web, involving the benefits system, the NHS and local authorities, all supplemented by unpaid care. Families must make separate applications based on slightly different criteria to access various types of support.
On the supply side, social care is provided by a patchwork of public, private and third sector providers. There is no single body coordinating across these different systems and providers. Even in non-pandemic times, this makes the system difficult to navigate and for it to make the most efficient use of public money across services. When the pandemic hit, many home and community services were withdrawn, leaving many without the care they needed, and unpaid carers without support.
Second, the information held by the government and the NHS on those with learning disabilities is incomplete and sometimes inaccurate. This in part reflects the lack of coordination across the systems and services that provide support for those with learning disabilities. During the pandemic, this made it harder to identify quickly how different groups were affected by the pandemic and design and implement targeted policy responses. For example, once the JCVI had decided to extend the vaccine to all those with learning disabilities, the roll-out was impeded by the incomplete GP Learning Disabilities Register.
Third, there are large geographical and socio-economic inequalities in the support available. More deprived areas, with the most need, had the greatest reductions in per person local authority spending between 2009/10 and 2017/18. This was further highlighted during the vaccine roll-out where some local authorities prioritised those with learning disabilities more than others.
The government has again committed to bringing forward improvements in social care. The pandemic has highlighted how vital reform is to providing high quality support to those who need it. The pandemic has also demonstrated that younger social care users do not receive much attention in the debates around either the current shortcomings or future of social care.
How could the social care system for those with learning disabilities be improved?
The effects of the pandemic on mortality and access to support for those with learning disabilities will inevitably lead to many reflections on how the organisation and delivery of services could be improved. Looking through an economics lens, there are at least two areas where policy reform could make system more efficient and better for those that rely on it.
The first is to build up the links between the different systems that support people with learning disabilities. Separate assessment processes for disability benefits, employment support and social care generate high administration costs for the state and are burdensome for families. It is also harder to ensure that each person has the most cost-effective package of support that meets their needs.
The second is to improve data collection on the health and social care use of those with learning disabilities. This would make it easier to monitor the impacts of particular policies or events, such as the pandemic, on the population with learning disabilities, target policy interventions, and allow for more joined-up or integrated health and care services. Better data in this area could also help in assessing the quality of social care for younger adults, which is often delivered by private companies or third sector organisations.
Where can I find out more?
- Mencap for advice.
- Social Care Sector COVID-19 Support Taskforce: final report, advice and recommendations.
- Wave 1 results from Warwick study into the lives of adults with learning disabilities through the pandemic.
- A summary of government support for people with a learning disability.
Who are experts on this question?
- Rafael Wittenberg, London School of Economics
- José Luis Fernández, London School of Economics
- Chris Hatton, Manchester Metropolitan University
- Anita Charlesworth, Health Foundation