Plain English summary
From the policy viewpoint, there are important differences between social care for people with disabilities and the medical interventions that were originally the focus of the National Institute for Health and Care Excellence (NICE):
The family context is especially important, since partners and other family members constitute the largest single source of care services for people with disabilities. Consequently, public support may “spill over” beyond the person with disabilities to benefit his/her family carers as well (spill-overs outside the household are beyond the scope of this project).
Public support is often provided in the form of income supplements rather than services – for example, many more disabled over-65s receive support in the form of disability benefit payments (the responsibility of the Department for Work and Pensions) rather than local authority-sponsored care services (the responsibility of the Department for Health and Social Care).
Social care subsidised by local authorities is subject to a strict means test, in a way that NHS medical care is not.
These differences mean that we should take a wider view than standard cost-effectiveness analysis does. The data requirements are consequently more substantial. We need data on care outcomes that are representative of the relevant population and that include good measures of:
the extent and type of disability;
the wellbeing of disabled people and those they live with;
their income and receipt of additional disability benefit and care subsidies;
and the informal care activity by partners and other friends and family.
Preferably, the data should be gathered over time for the same individuals, so that we can observe how changes in disability and the level of public support affect people over time. Moreover, the number of households and individuals covered by the data needs to be large, so that there are enough examples of various types of disability to allow meaningful analysis. These data requirements are formidable. One of the few sources that might meet all of these requirements is the UK Household Longitudinal Survey (also known as Understanding Society), which has interviewed up to 100,000 adults in 40,000 households annually since 2009.
The project is using UKHLS data from interviews with older couples (aged 65+) over 2014-19 to investigate the relationship between disability, wellbeing, economic resources (income, benefits, care subsidies) and caring activity.
In the initial stage, the project will do a number of things:
Describe the differences in various aspects of wellbeing between disabled and non-disabled individuals, using statistical methods that allow for the fact that the two groups may differ on average in other respects – for example, people with disabilities tend to be older and are more likely to be disadvantaged in terms of income, housing, etc.
Distinguish between people with severe and milder levels of disability.
Examine the impacts of disability on the wellbeing of partners, to test the hypothesis that there are important unmeasured costs borne by partners
Describe the support that people with varying degrees of disability receive from:
o public sources (disability benefit and Local Authority subsidised care services)
o private sources (weekly hours of care by partners and family or friends outside the household)
If, after discussion with the EEPRU Oversight Group, the first stage of the project is seen to raise important issues deserving further research, then a second stage will examine the impact on wellbeing of people experiencing the initial onset of disability, and of already-disabled people experiencing an increase in the severity of their disability.