Disability, care and participation: secondary analysis of the Life Opportunities Survey and the 2009/10 Survey of Carers in Households

Lead Research Organisation: University of York
Department Name: Social Policy Research Unit

Abstract

Growing numbers of people across the world live with impairments. Medical and technological advances mean that babies and children with impairments are more likely to survive into adulthood, adults are more likely to survive accidents and diseases that would previously have killed them, and more people are living to old age, but often with long-term conditions and impairments. At the same time, financial constraints on governments mean that emphasis is being put on family members and friends ('carers') to provide the support that disabled and older people need to help them live independently.
The UK has carried out a range of surveys of impairment, disability and carers since the mid-1980s that have helped policy makers understand how many people need and provide support and these have provided organisations with 'ammunition' to help them campaign for change. The information from the latest in these series of surveys - the Life Opportunities Survey (LOS) and the Survey of Carers in Households (SCH) - has recently become available and offers an important opportunity to explore new and emerging patterns of impairment, disability and caring.
The LOS is exciting because it is the first survey to explore how the environment in which people live (housing, transport, other people's attitudes and so on) influences whether or not their impairments become disabilities. In doing this, it has responded to the criticisms of earlier surveys that disabled people and their organisations made. These criticisms pointed out that it is often the environment that people live in and the support services they have access to that turn an impairment into a disability. The LOS also collects information about everyone in a household, so we can also explore whether disabled people and other people in their household experience similar barriers to participation in society. The survey covers both children and young people (from the age of 11) and adults of all ages.
The Survey of Carers in Households is important because it seems to show that the population of carers has changed since the mid-1980s, with more people providing care when they themselves are well into older age.
Our work will:
- explore how patterns of impairment, disability and caring have changed over time;
- look at how disabled people and those who live with them experience barriers to participating in society;
- explore whether disabled people who live in more deprived areas or in the countryside experience different sorts and
sizes of barriers to other disabled people.
We will do this by using data from the two surveys and carrying out different statistical tests that will allow us to tease out all the different factors that might affect the experience of being disabled or being a carer.
As we do the project, we will be using senior researchers who have experience of this sort of work to train and 'bring on' the next generation of researchers.
We will have three partners in our project - SCOPE, an organisation of and for disabled people; Carers UK, an organisation of and for carers; and the Department of Work and Pensions, the English government department with lead responsibility for policy about older and disabled people. These partners will choose detailed questions that we will explore in our work. They will also help us to bring the findings from our work to other organisations and groups who will find them helpful.
At the end of the project, we will write reports of the different parts of the work, and will also write a four page summary, in everyday language, so that we can share our findings with as wide a range of disabled people, carers and the wider public as possible. We will write articles for professionals who work with disabled people and carers, as well as for other researchers. Finally, we will run a workshop where we can share our findings face-to-face with others who can use them in their work and campaigning.

Planned Impact

Academic beneficiaries have been outlined in a previous section.

The main groups of other beneficiaries are: representative organisations of disabled people; representative organisations of older people; representative organisations of carers; government departments; and the general public. They will benefit in the following ways:

1. Organisations of disabled people will be able to use the findings from this research in their campaigning to overcome barriers to participation experienced by individual, and groups of, disabled children, young people and adults. Organisations that represent older people will similarly be able to use findings in their campaigning that highlight the distinct needs of older people as they acquire impairments and/or take on caring responsibilities.

2. Carers' organisations will benefit from the greater understanding that our work will generate about two groups of carers whose needs have been underplayed in recent policy making - carers over the age of 65 and those who support their disabled children (of whatever age).

3. Extending understanding of the LOS and SCH within our third sector partners, thus building the base for these organisations to use the datasets in the future.

Two representative organisations (SCOPE and Carers UK) are partners to this bid and will directly influence detailed questions addressed in the project's work packages, thus making them direct beneficiaries of the project.

3. Several government departments would also benefit from the results of our work. The Department of Work and Pensions is a partner to this bid and will influence detailed questions addressed in the project, thus making it a direct beneficiary as we address issues that are currently on its agenda. Policy-makers in other parts of DWP that deal with welfare and employment would benefit from increased understanding of the ways impairment is translated (or not) into work- or income-related disability and we will target them directly with our findings. Other government departments that stand to benefit from our work include the Department of Health, which maintains policy responsibility for carers' issues and would thus benefit from the knowledge we generate about the impact of caring and the changing shape of the population of carers. The Department of Communities and Local Government maintains policy responsibility for housing and local government financing; it would thus benefit from the understanding we will generate about how housing increases or reduces barriers to participation for disabled adults and children and the role of access to public services in mitigating barriers. The Department of Transport, similarly, would benefit from increased understanding of the role of transport in increasing or reducing barriers to participation. The Department of Education could also benefit from the knowledge we will create about how disabled children and young people experience barriers to participation and how they might address these through education policy.

4. The general public also stands to benefit from the new knowledge we will generate about disability and caring. The majority of us will survive into older age, many of us with increasing impairments, and many of us will also take on caring responsibilities. New knowledge about how these transitions lead to the experience of disadvantage and of barriers to participation opens up the possibility of designing policy and practice that ameliorate those experiences for the high proportion of the population that will experience impairment, caring or both.

As we explain in our 'Pathways to Impact' document, we have planned knowledge transfer and partnership activities to ensure that our findings reach and influence as wide a range of these potential beneficiaries as possible. These include training in use of the data sets for our partners, advisory group involvement throughout, and tailored, multi-media project outputs and activities.
 
Description We have shown the ways in which the population of adults providing unpaid (informal) care to disabled or older people in England has changed since the first representative national data on carers became available in 1985. We did this by carefully comparing data from the 1985 General Household Survey (GHS) and from the 2009/10 Survey of Carers in Households (SCH). Our analysis demonstrated that the population of carers is now older on average than it was in 1985, largely explained by the substantial growth since 1985 in carers supporting a spouse or partner. There has been no increase in the proportion of carers supporting a parent and an increase in the proportion supporting a child (whether young or adult). The average level of heavy involvement in caring has increased across all carer age groups.

Despite the increased age and heavy involvement of carers, we found substantial reductions in the proportion reporting that the person they supported received any health and social care services. Our analysis took into account several factors that might influence service receipt. This suggested that while people whose carers provide the heaviest types of caring are more likely to receive services, there is a continuing and apparently sharper discrimination against those supported by a relative in the same household.
We have also increased understanding of how data from the nationally representative Life Opportunities Survey (LOS) of disability and participation can be used to explore barriers to participation in a range of social, economic, and civic activities, across different groups of disabled and non-disabled adults and children (11-16 years).

Working with the LOS data was challenging, mainly because crucial information about how the data had been analysed and new variables created by its originators had to be tracked down from different sources. Once we were able to proceed with analysis, we discovered how valuable this survey is for understanding who experiences barriers to participation in modern life, how impairment increases these restrictions, and which areas of participation are more or less affected by impairment. When we explored participation restrictions we controlled for a range of individual, household and area characteristics that might affect participation. Despite this, in every area of participation we examined, the presence of impairment added to the likelihood of individuals reporting restrictions.

There are now three waves of LOS data, opening up opportunities for research on transition into and out of impairment and participation restrictions. The first wave contains large amounts of interesting and useful data that remain to be fully exploited. Creating technical reports for analysis of the LOS and making these freely available means that others will be able to use these data more rapidly than we were able to, thus creating a lasting legacy for other researchers.

We explored in depth the ways in which participation restrictions grouped together and whether the data on impairment could be used to create a scale; in neither case were we able to create secure measures, indicating the need for complex analysis in future work.
Exploitation Route We had three research user partners in this project - SCOPE, Carers UK and the Department of Work and Pensions - who helped direct some analyses, particularly in relation to participation restrictions in the LOS. All have and will be using the findings of the project - both in campaigning (for the third sector partners) and to inform their policy thinking. Our full working papers will add further to this use.

The working papers outputs are freely available on our project website and we will be advertising their existence to a wide range of potential users - government departments, local authorities, the health service, user organisations and third sector organisations with an interest in disability, care and participation. Academic papers will follow.

Our technical reports, also freely available via the project website, will allow other researchers to replicate our approaches; this is particularly important for the LOS, where the range of secondary analysis carried out by researchers so far has been limited. The LOS is a rich source of data on the experience of participation restrictions for the whole population, not just people who report impairment, and deserves to be more fully exploited. Advertising our technical report will, we hope, prompt further use.
Sectors Communities and Social Services/Policy,Education,Healthcare,Leisure Activities, including Sports, Recreation and Tourism,Government, Democracy and Justice,Transport

URL https://www.york.ac.uk/spru/projects/secondary-analysis/
 
Description 1. Findings from both elements of the project have been submitted to the Government Office of Science as part of their work reviewing evidence on carers to inform the forthcoming Green Paper on adult social care. It is not yet possible to say what impact, if any, this will have. 2. We provided Carers UK, who were partners to the project, with a lay summary of the findings from the GHS/SCH analysis for use on their website. Despite requests to Carers UK, we are not clear that this material has actually been used by them.
First Year Of Impact 2017
Sector Other
Impact Types Societal,Policy & public services

 
Description Presentation to NHS England's Carers Oversight Group.
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Provided evidence to House of Parliament Parliamentary Office of Science and Technology for their briefing paper for Members who will be debating the upcoming Green Paper on adult social care.
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Request for evidence to Government Office of Science as part of their review of evidence on caring for the forthcoming Green Paper on adult social care. Both final reports were submitted.
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
 
Description Partners in ESRC funded project: Disability, Care and Participation 
Organisation Carers UK
PI Contribution As part of our project steering meetings, we provided our partners with early results from both programmes of analysis in the project that they could feed back to their organisations and, where appropriate, into planning. In our initial steering meeting they told us the areas in which they had a particular interest and we designed our analysis plans to accommodate these areas.We presented findings to a group of policy makers at DWP. We provided Carers UK with a lay summary of findings for their website but we are not aware that this was ever used.
Collaborator Contribution See above - attendance at project steering meetings and guidance on programmes of analysis that they would particularly value.
Impact https://www.york.ac.uk/media/spru/ESRC%202676%20-%20Disability%20Care%20and%20Participation.pdf https://www.york.ac.uk/media/spru/ESRC%202676%20-%20Disability%20Care%20and%20Participation.pdf https://www.york.ac.uk/media/spru/ESRC%202675%20-%20Technical%20Report_SCH.pdf https://www.york.ac.uk/media/spru/ESRC%202674%20-%20Technical%20Report_LOS.pdf https://www.york.ac.uk/media/spru/ESRC%202673%20-%20Technical%20Report_GHS.pdf
Start Year 2015
 
Description Partners in ESRC funded project: Disability, Care and Participation 
Organisation Department for Work and Pensions
Country United Kingdom 
Sector Public 
PI Contribution As part of our project steering meetings, we provided our partners with early results from both programmes of analysis in the project that they could feed back to their organisations and, where appropriate, into planning. In our initial steering meeting they told us the areas in which they had a particular interest and we designed our analysis plans to accommodate these areas.We presented findings to a group of policy makers at DWP. We provided Carers UK with a lay summary of findings for their website but we are not aware that this was ever used.
Collaborator Contribution See above - attendance at project steering meetings and guidance on programmes of analysis that they would particularly value.
Impact https://www.york.ac.uk/media/spru/ESRC%202676%20-%20Disability%20Care%20and%20Participation.pdf https://www.york.ac.uk/media/spru/ESRC%202676%20-%20Disability%20Care%20and%20Participation.pdf https://www.york.ac.uk/media/spru/ESRC%202675%20-%20Technical%20Report_SCH.pdf https://www.york.ac.uk/media/spru/ESRC%202674%20-%20Technical%20Report_LOS.pdf https://www.york.ac.uk/media/spru/ESRC%202673%20-%20Technical%20Report_GHS.pdf
Start Year 2015
 
Description Partners in ESRC funded project: Disability, Care and Participation 
Organisation Scope
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution As part of our project steering meetings, we provided our partners with early results from both programmes of analysis in the project that they could feed back to their organisations and, where appropriate, into planning. In our initial steering meeting they told us the areas in which they had a particular interest and we designed our analysis plans to accommodate these areas.We presented findings to a group of policy makers at DWP. We provided Carers UK with a lay summary of findings for their website but we are not aware that this was ever used.
Collaborator Contribution See above - attendance at project steering meetings and guidance on programmes of analysis that they would particularly value.
Impact https://www.york.ac.uk/media/spru/ESRC%202676%20-%20Disability%20Care%20and%20Participation.pdf https://www.york.ac.uk/media/spru/ESRC%202676%20-%20Disability%20Care%20and%20Participation.pdf https://www.york.ac.uk/media/spru/ESRC%202675%20-%20Technical%20Report_SCH.pdf https://www.york.ac.uk/media/spru/ESRC%202674%20-%20Technical%20Report_LOS.pdf https://www.york.ac.uk/media/spru/ESRC%202673%20-%20Technical%20Report_GHS.pdf
Start Year 2015