Melanie Henwood, independent social care consultant, reviews the findings of a study that will inform the government’s aim of equality for disabled people by 2025
Title: Experiences and Expectations of Disabled People: A research report for the Office for Disability Issues.
Authors: Bridget Williams, Phil Copestake, John Eversley and Bruce Stafford
In 2006 the Office for Disability Issues commissioned research to explore the lives of disabled people in the UK. The work builds on previous research and addresses information gaps on how their lives have changed. It also provides baseline information to assist in monitoring progress towards the government’s target of equality for disabled people by 2025.
The research adopted a number of strands in designing a large-scale quantitative survey of 1,860 disabled people. Disabled people and organisations were engaged through a reference network and a steering group, and were substantively involved in the design, delivery and analysis of the research. Further qualitative work was also undertaken with hard-to-reach groups. In-depth “ethnographic” interviews were undertaken, and focus groups held.
The disabled population is overwhelmingly an older one, and almost half of all disabled people in the survey were of pensionable age. The incidence of impairments increases with age, and older people were more likely to report multiple impairments. However, while for some people disability is age-related, just over half of the survey population had been disabled before they were 50, and 3% had been disabled all their lives.
The survey found that nine out of 10 disabled people had taken part in at least one social activity outside the home in the previous month. Older people were less likely to have done so, as were people with low incomes and with multiple disabilities. About seven in 10 disabled people identified barriers to their participation in more activities these were most likely to be associated with health, lack of money, lack of confidence and poor transport.
Older disabled people were more likely to be satisfied with their lives and the support they received, while younger people (16 to 34) were least likely to be satisfied. The survey observed that the lower satisfaction levels of younger people were likely to reflect higher expectations rather than different experiences. The findings on greater satisfaction (and lower aspirations) of older people are consistent with a range of other research findings on older people.
Strikingly, the study found that people with mental health conditions reported the poorest experiences and outcomes they were less likely than other disabled people to be in paid work, and more likely to live in low-income households and to feel they had been discriminated against.
Disabled people are less likely than the general population to have been involved in civic participation (defined in terms of taking action to solve a problem they feel strongly about – such as through contacting the council or their MP). This was true of 27% of disabled people compared with 38% of the general population.
Disabled people were less likely to be involved in education or learning. This was true of just 10% of the survey compared with 23% of the adult population overall. The significance of participation in learning opportunities is not simply for their educational value, but also for their wider social opportunities and as a way to “keep active”. Some of these findings are distorted by the age profile of the survey population. As the authors note, because older respondents were more likely to have left school before 16, levels of participation in education beyond compulsory schooling are distorted.
Nonetheless, across all age bands disabled people were less likely than the population overall to have formal qualifications. One in 10 were participating in a form of education. More than one-fifth who were not in any learning at the time of the interview indicated that they would like to do so, but many identified reasons why they could not.
Some disabled people face levels of discrimination which create further barriers to their participation and engagement in society. However, only 5% of people in the survey reported that barriers and attitudes in society prevented them leading a full life. Nonetheless, one in eight disabled people reported being treated unfairly or experiencing discrimination, and this was more likely among younger disabled people (26%), people with mental health conditions (35%) and people with multiple impairments (18%).
The value of employment to disabled people is evident. More than 90% of respondents in paid work agreed that employment was important in terms of financial independence, but also in keeping active, making a contribution to society and providing social opportunities to meet people. But the study found that disabled people were disadvantaged in the labour market and those in paid employment were less likely to be in managerial or professional posts.
Disabled people of working age who were not in employment were most likely to say they were unable to cope with work or were not well enough. However, one in 10 believed they did not have the skills to get paid employment. This was highest (17%) among those aged 16 to 34.
Economic well-being has a pivotal importance in people’s lives. Survey respondents identified their limited finances as a barrier to participating in activities. Disabled people in households with lower incomes were also less likely to report positive outcomes.
More than half the respondents were living on a household income below the national average, and one in six identified financial difficulties. Half identified concerns about their finances in the future.
The survey also explored people’s housing and home situations, including support. A high proportion (89%) indicated that their home was suitable for their needs. The figures were lower for younger disabled people (81%) and for people with visual impairment (61%). The majority of disabled people (54%) had no aids, adaptations or equipment to help them with their daily lives, while a quarter indicated that they would like to have such help.
Many disabled people have regular support from others 41% reported help with day-to-day activities, and 47% reported help with other activities on a more occasional basis. People who live alone were most likely to identify needs for support that were not being met. People were most likely to have help from their spouse or partner, or from their children. This is consistent with a wide range of research over many years both of people with disabilities and of carers who support them. One in seven had help from formal sources (such as social care). Of these, a quarter said they had no choice about important aspects of that support such as who provided it or at what times. Lack of choice was strongly associated with overall dissatisfaction with support.
Nearly 60% viewed their lives as good 30% rated their lives as all right and 10% thought their life was bad. Dissatisfaction is highest among younger people, those living alone, people with mental health conditions, people from ethnic minorities, those in urban areas and those on low incomes.
DISCUSSION AND ANALYSIS
The study’s approach is based on the social model of disability. This understands disability as resulting from the way society is organised and that disabling barriers are associated with attitudinal, economic and environmental factors which prevent disabled people having equality of opportunity. As the 2005 report, Improving the Life Chances of Disabled People, concluded, removal of these barriers “is the key to empowering disabled people and giving them the opportunity to exercise their responsibilities as citizens – in the home, in the community, and in the workplace”.
The transformation agenda in adult social care is centrally concerned with promoting independent living, and maximising choice and control through person-centred planning and personal budgets. The findings show that disabled people are less likely to be in paid work, less likely to have academic qualifications and more likely to be found in lower income households. The authors remark that “there is no evidence that the gaps between disabled and non-disabled people are closing”.
On a more positive note it is the case that, since the Disabled for Life survey was conducted in 2001, disabled people are now less likely to experience problems in accessing goods and services. This suggests that disability discrimination legislation has had some impact and attitudes are changing.
- Download the study from: http://www.officefordisability.gov.uk/research/eedp.asp
- Bridget Williams, Phil Copestake, John Eversley and Bruce Stafford (2008), Experiences and Expectations of Disabled People: A research report for the Office for Disability Issues
- Cabinet Office (2005), Improving the Life Chances of Disabled People, Prime Minister’s Strategy Unit.
- Grewal I, Joy S, Lewis J, Swales K and Woodfield K (2002), Disabled for Life? Attitudes to, and experience of, disability in Britain, DWP Research Report No 148
Participation and social networks: More than nine in 10 disabled people had taken part in social activities in the month before the survey, but older people were less likely to have been involved in activities outside their home. The attitudes of other people in society were seen as a significant barrier to participation, particularly for people with mental health problems.
Health and social care: Support is most likely to be informal. Many people who receive help from formal sources experience a lack of choice or control on delivery. Lack of choice was strongly associated with expressed dissatisfaction.
Housing: The suitability of housing is key to independence. More than a quarter of disabled people would like to have aids or equipment to help them but many did not know how to get such help.
Education and learning: Disabled people are significantly less likely than the rest of the population to have formal educational qualifications. Being involved in education or learning activity is viewed positively. Current reductions in opportunities for disabled people to access college classes which do not have employment-related outcomes, or where people cannot demonstrate progression, overlook the wider benefits.
Employment: Disabled people are less likely than the working age population to be in paid employment. Where they are working, they are less likely to be in managerial or professional positions. Among those who are not in paid employment more than 40% do not feel able to cope, but 17% of young disabled adults do not believe they have the right skills.
Discrimination: A small minority of disabled people see discrimination as the sole factor preventing them from leading a full life, but one in eight felt they had been treated unfairly or discriminated against. Younger disabled people and those with mental health conditions were the most likely to identify discrimination. Tackling the attitudes of society is centrally important in promoting social inclusion.
This article is published in the 11 September edition of Community Care magazine under the headline What disabled people expect and what they get