EXECUTIVE SUMMARY
AIMS AND METHODS
The main aim of this six-month scoping study was to review research and related evidence about the needs of, and services to, disabled people aged 16-64 in Scotland, including people with early onset dementia. Other important objectives were to identify the volume of evidence on different topics, gaps in current knowledge, relevant research in progress and key emerging issues, both overall and those affecting particular groups of disabled people.
Our approach was broadly informed by the social model of disability. However, this report necessarily reflects the fact that much disability research is impairment specific. In addition, in line with the research specification, the study does not include people with learning disabilities or mental distress.
The research was conducted using a six part framework for scoping studies, comprising:
Stage 1: Identifying the research questions
Stage 2: Identifying relevant studies
Stage 3: Study selection
Stage 4: Charting the data
Stage 5: Collating, summarising and reporting the results.
Stage 6: Consulting with key stakeholders. (Arksey and O'Malley 2005).
The evidence scoped covered the 10 year period up to December 2004 with the main focus on Scottish publications. A systematic search strategy was used on all relevant electronic databases, national statistics were examined and approaches made to academic institutions, specialist organisations, voluntary agencies and organisations of disabled people, requesting them to alert us to relevant material. A Microsoft Access database was designed to manage material and catalogue references. Most items related to more than one topic so there is considerable overlap between the studies scoped in the various sections.
The Scottish Disability Equality Forum ( SDEF), an umbrella body representing 140 organisations, was consulted at various stages of the study - when drawing up the research proposal, when searching for relevant material and at the draft reporting stage.
The main limitations of the study lie in its short timescale and restricted budget. This has meant we have been unable to include unpublished work, visit specialist libraries nor hand search journals. Thus, the material presented in this report is not comprehensive.
MAIN FINDINGS
Equality and Diversity
Thirty-two publications relating to equality and diversity were identified, 23 of which included disabled people's perspectives. Research has shown a high level of hate crime against disabled people in Scotland, although market research about public awareness and attitudes towards disabled people has elicited mainly positive responses. There has been relatively little research about the needs of disabled people from Black and minority ethnic groups in Scotland, with studies tending to be impairment or location specific. Nevertheless there are some recurring themes - a lack of awareness of services, often linked to poor information provision, cultural insensitivity within services, discrimination within the labour market and the benefits system, and a continuing acceptance of certain stereotypes about Black and minority ethnic families.
Little research has been carried out about gender and disability in Scotland. We were unable to find any published research about lesbian, gay, bisexual and transgender people with physical/ sensory impairments in Scotland. An English study exploring the experiences of disabled people with multiple identities reported mostly positive findings but, overall, the evidence suggests that diversity is not always seen in this light. Overall there is a need for greater emphasis on all disabled people being treated with courtesy, dignity and respect.
Needs Assessment
Twenty-eight publications are included in this section, although not all have needs assessment as their main focus. Sixteen include users' perspectives. The research tends to be either impairment specific or to look at assessment for particular services. No statistics are kept about unmet need yet a meaningful strategy to record it is essential in order to satisfy the needs of forward service planning. Needs are often discussed in terms of the services deemed necessary to meet them rather than in a wider 'needs-led' context. Overall, disabled people are portrayed as having needs rather than rights or entitlements.
Research in England has suggested that disabled people find community care assessments 'confusing and fragmentary' and often irrelevant to their real concerns. Differences between users' and professionals' priorities are a recurring theme, for example, social workers may fail to grasp the mutuality of many caring relationships. Professional decisions about assessment are often based on service criteria and perceived risk, both framed more narrowly than disabled people may see them. Taken as a whole, the research suggests that disabled people have a low level of involvement in the assessment process.
Needs assessment is subject to geographic variation, with local authorities, and sometimes local teams within authorities, interpreting central guidance differently. Arrangements for assessing the needs of people with sensory impairment in Scotland are described as ad hoc and subject to delay. The benefits of a holistic, multi-disciplinary approach are emphasised.
Transition to Adulthood
Fourteen publications relating to transition to adulthood were found, 10 of which report young people's views. There is little research specific to Scotland, although there are two recent reviews of the literature, one relating to Scotland. The main message from this research concerns the difficulties surrounding transition planning, both in terms of involving young disabled people in the process and ensuring that plans made are carried through. While most young people see leisure and friendships as important elements of moving towards adulthood, as well as finding opportunities for study and work, professionals may tend to see transition more narrowly, in terms of moving young people out of children's services and into adult provision. Poor co-ordination between children's and adult health and social care services has been reported frequently although there are increasing examples of good practice projects aiming to ease the transition.
Young disabled people face barriers in their everyday lives, in the form of inaccessible transport, the built environment, the impact of segregated education and the negative attitudes of others. Lack of appropriate support to overcome these obstacles can leave young people excluded from mainstream youth activities and culture.
Education
There are 22 publications on this topic, 14 including disabled people's views. There is a relatively high proportion of Scottish research. The research identifies various structural and institutional barriers to disabled people accessing education and achieving their full potential. Such barriers may be viewed by professionals in terms of individual, even medical, needs. Low expectations of disabled people among service providers, particularly those involved in transition planning and careers guidance can hold people back. The concept of inclusion may be misinterpreted as meaning that everyone should be treated in the same way, rather than incorporating disabled people's needs in all policies and procedures. However, more recent research points to progress in making appropriate provision, likely to be further improved by recent legislative changes.
Employment
We identified 39 publications about employment, including several Scottish specific studies. Twenty included disabled people's views. A review of the evidence base in this area has just been published by the Scottish Executive (Riddell et al 2005). It is well known that disabled people are poorly represented in the labour market and, even when employed, can be subject to financial exclusion and disadvantage. There is still much work to be done to understand and respond to disabled workers' needs: many want more structured, formalised support. The benefits of supported employment, as perceived by disabled people, service providers and employers, are well documented. Supported employment works well for some people with complex needs but funding arrangements are generally short term and insecure.
There is evidence that the New Deal for Disabled People is failing to address underlying barriers to employment linked to exclusionary market and welfare structures. There is a lack of suitable jobs for disabled people, with many fearing they will not be able to return to Incapacity Benefit if they stop working. It is too soon to assess the impact of the new provisions of the Disability Discrimination Act ( DDA) 1995 affecting employers. However research suggests that the government could do more to counter misunderstandings held by employers about the DDA.
Benefits
Thirty publications relating to benefits were found, 17 including disabled people's perspectives. Much of the research relates to the UK as a whole, reflecting the fact that social security is not a devolved matter.
There are complex links between impairment, socio-economic status, employment and benefit receipt. Wide variation exists in disabled people's financial situations depending on what benefits they know of, apply for and receive. Households with a disabled member have incomes 20-30% below that of other households. Taking account of the extra costs they face, half of all disabled people in the UK have incomes half that of the general population mean, usually taken as an indicator of poverty.
Access to financial resources is a major factor in disabled people feeling able to overcome the disadvantages they face yet research shows that current benefit rates for disabled people are inadequate to meet their needs. A complex system, inflexible rules and poorly branded benefits create difficulties for many, especially those from Black and minority ethnic backgrounds. Obtaining independent financial advice has been a turning point for some disabled people. Recent research has focused on measures to help disabled people off benefits and into work.
Housing
There are 26 publications in this section, many of them specific to Scotland, with 13 presenting disabled people's views. A good deal of detailed information exists about tenure, technology, disabled people's aspirations, affordability and good practice. However, the quality of information held by local authorities about disabled people's housing needs is said to be poor, rarely taking account of their views. Little is known about the needs of people in rural areas.
Access to suitable housing is key to establishing independence, although market driven and financial barriers can get in the way. Disabled people are twice as likely as others to live in the social rented sector. Research points to a limited level of user choice and understanding about housing support arrangements.
Transport
This was the topic where least evidence was found - only 8 publications, although this includes 2 Scottish reviews. Six include disabled people's perspectives. The apparent paucity of research on this topic was identified as a concern in our consultation with SDEF.
National statistics show that disabled people are less likely than others to hold a full driving license and households with a disabled member are less likely than others to have access to a car. Forty-seven per cent of disabled people are unable to use their local bus service. Uncertainty about the reliability and accessibility of transport can be a source of stress and deters some people from travelling. Disabled people have reported unhelpful attitudes among service providers. There is a need for an integrated and well co-ordinated public transport policy both nationally and locally. There have been improvements in accessibility recently although, overall, change remains slow and patchy, with geographic variation reported across Scotland.
Goods, facilities and services
Eighteen publications were identified on this topic, although few of them are specific to Scotland. Twelve include disabled people's views and there is some focus on young people's experiences.
Research in 2002 found that where organisations had made 'reasonable adjustments' to their services (as required by the DDA), this was usually in the form of physical adaptations, providers wrongly believing that their services were then accessible to everyone. Few had detailed knowledge or understanding of the DDA and the overall response to the legislation by service providers has been described as disappointing. One in five disabled people experience difficulties accessing goods, facilities and services. These include staff attitudes, the nature of the built environment, poor information provision, unhelpful presentation of goods and failure to use available technologies.
Social care - needs and services
Fifty-seven publications fall into this category, 28 reporting users' views. Most focus on particular groups of disabled people or specific services: the most recent overview of social care services to disabled people in Scotland was published nearly 10 years ago.
Twenty-four per cent of disabled adults aged 16-54, and 19% of those aged 55-64, require regular assistance. Research in Scotland has identified a lack of clarity about the objectives of care management although practitioners report more success in supporting disabled people at home than other user groups, because a range of funding sources is available.
People consistently report that being able to exercise choice and control in their support arrangements is of paramount importance. Organisational culture and staff attitudes can militate against this. Although take-up of direct payments has been slow in Scotland, a wide range of benefits is consistently reported. Disabled people want flexible services, responsive to individual needs and preferences and able to offer a range of practical, emotional and moral support. Research points to certain gaps in services and a shortage of provision for particular groups, including people with early onset dementia who are often inappropriately included in services for older people with dementia. Here, staff role and attitudes are crucial, a holistic approach is required and more evidence based training is needed, a point endorsed in our consultation with SDEF. There is a great deal of information available from both statutory and voluntary bodies and there is an identifiable demand for that information but what is absent is the mechanism to bring these two together in an easy and efficient way.
Health care - needs and services
This topic yielded 46 publications, including 32 specific to Scotland. Twenty-five publications report users' views.
Most of the research is based on a medical model of disability although the relevance of the social model is pointed out by some writers. The importance of accessible environments and inclusive attitudes and practices, if disabled people are to benefit from health care provision, is stressed. A number of studies examine rehabilitation services, with some pointers to good practice identified, for example, involving people with communication impairments in setting rehabilitation goals and employing a writer-in-residence within a rehab unit. However, it is also suggested that 'younger' disabled people living in nursing homes have few opportunities for review and rehabilitation, while rehab services for amputees are under-used. There is a need to make grater provision for younger stroke patients.
Research repeatedly underlines the importance of collaboration and joint working between health care professionals working in different areas and between health workers and colleagues in other disciplines. There is growing evidence about the health care needs of people with profound multiple impairments and those with early onset dementia.
Equipment and adaptations
We identified 17 publications in this area, 11 containing users' views. Long waiting lists and delays in providing equipment and particularly adaptations are frequently reported. These are attributed by more than one source to problems associated with authorisation of funding and a lack of delegated decision-making. Again, there is geographic variation across Scotland. There have been significant developments in policy and practice over the last decade, reflecting underlying changes in thinking about the purpose of providing equipment and adaptations to disabled people. The most recent publications focus on joined up, person centred services, aiming to promote equality and social justice. Proposals are made for future developments in mainstreaming provision and more inclusive design.
Technology and communication
Fifteen publications fall into this topic, 8 including a user perspective. Recent research highlights the huge potential of cyberspace for disabled people but the financial costs of buying a computer and the associated technologies that may be required prevent many disabled people from going on-line. A number of studies explore the benefits and limitations of both low- and high-tech communication aids. Speech and language therapists have wide ranging skills in direct communication work with disabled people but it is suggested that many are less than comfortable with the technical aspects of equipment.
Families and carers
There are 32 publications on this topic, most small-scale, qualitative and impairment group specific. Carers' views are given in 12 studies, disabled people's in 8. These studies should be seen in the context of the wider literature on caring, which is a contested field. Commentators have challenged the representation of caring as a 'burden' and the usefulness of the concept 'young carers', while also stressing the need to recognise the interdependence within many caring relationships.
The studies scoped suggest that, overall, researchers have moved on in their thinking, with many focusing on support needs, rather than 'burden' and several including disabled people's perspectives. Carers want more accessible information, fuller assessments of their own needs, short breaks and counselling. The timing of support offered to carers is crucial, as is a partnership approach. As some studies illustrate, disabled people's relatives are not necessarily their carers, nor do all families show 'caring' attitudes towards their disabled members. It is reported that children of people with early onset dementia may feel shame and embarrassment, while some disabled women are subject to violence and abuse at the hands of their partners.
Unmet need
Forty-five publications contain information about unmet need but in many cases this is not their main focus: 23 include disabled people's views. There are no national statistics about unmet need. Unmet need is approached in various ways - in terms of structural or attitudinal barriers, impairment group, type of unmet need, shortage of particular services and perceived shortcomings of specific provision. Barriers identified include inaccessible transport, housing, education, retail services, the built environment and low incomes. Specific groups identified as having significant unmet needs include people with early onset dementia, those with profound multiple impairment and individuals with sensory impairment. Services in short supply are said to include clinical psychology and legal advice and information. Some good practice is identified, aimed at overcoming the barriers contributing to unmet need.
CONCLUSIONS
Summary of volume and nature of evidence
The total number of items scoped was 223, the majority being research studies. Most evidence relates to the statutory sector, with surprisingly little about the voluntary sector and less about private provision. Just over half the publications were exclusively about Scotland.
The study included examination of all relevant statistical sources. Due to differences in the terms and definitions used - some asking questions about physical disability, others about mental disability, impairment, illness and other health issues - it is not always possible to isolate data relating to people with physical/ sensory impairment. Similarly, degree of impairment is not always evident in statistics. The Scottish Household Survey should continue to provide valuable time series data on prevalence and use of services in the future. More in-depth analysis linked to degree of impairment is available from the Disability Surveys for Great Britain.
Key emerging issues
A striking feature of much research and related evidence is the absence of an explicit theoretical framework. Much is impairment specific, implying a medical model of disability, with a focus on individuals' care needs. Other work conceptualises the challenges disabled people face in terms of barriers. Some studies oscillate between different perspectives.
Barriers to meeting disabled people's needs /rights and providing effective services can be identified at various levels. Examples of structural barriers include inaccessible housing, transport and aspects of the built environment. There are many policy barriers, such as segregated schooling and lack of effective inclusion polices within further and higher education. Several studies illustrate the 'knock-on' effect which barriers in one area can have on others; for example, transport related exclusion impacts on people's ability to work and to access leisure facilities. Problems at policy level can cause barriers within services and thus, at practice level. The fact that much research relates to particular services reflects the patchy and piecemeal nature of current provision, with geographic variation reported across Scotland, for example, relating to care management, direct payments and provision of equipment and adaptations. Delays in provision and shortages of specific services are reported. Barriers at cultural or attitudinal level are also discussed. These include an entrenched culture in some organisations which can make professionals reluctant to share power, and disrespectful attitudes towards disabled people on the part of service providers and the public more largely.
Disabled people are a heterogeneous group like any other and therefore there is no 'one' user view but rather a range of opinions, some of which may conflict. It is important to try to avoid over generalisation or over simplification when reporting disabled people's views.
There is limited discussion within Scottish research about disabled people's views across the board. There is evidence of people being consulted about individual studies or specific services. It appears there is great scope for wider and more active involvement of disabled people in setting research, policy and practice agendas.
At the individual level, disabled people frequently report a lack of accessible information and sometimes, in relation to finances and welfare benefits, confusion about how the system works and their own entitlements. Experiences of assessment are not good overall. Disabled people's views and priorities may differ from those of professionals who may tend to perceive the latter as service users or social work clients rather than seeing their lives and identities in the round.
People with early onset dementia
Research about people with early onset dementia in the UK is limited, and particularly so in Scotland, with much information being anecdotal. Thirty publications were included here. Studies about people with dementia often fail to consider the needs of those with early onset dementia. Both specialist and generic services have an important part to play. The aim of much research is to improve services, for example by identifying the elements of well co-ordinated care addressing primary need. The literature on services to this group should be seen in the wider context of services for people with dementia, which are generally marginalised and under funded.
People with sensory impairment
While there is relatively good information about services to people with sensory impairment and about Deaf people in Scotland, less is known about those with visual impairment and deaf-blind people. Indeed, data about the numbers and needs of the deafblind community is not complete. There is ongoing debate about various aspects of provision to people with sensory impairment in Scotland - whether community care teams should be impairment specific for example, and the value of contracting out services to the voluntary sector. People with sensory impairment face additional expenditure to meet their daily needs and can experience considerable isolation and prejudice. The Scottish Executive (2004a) has recently issued an action plan for services in this area.
People with profound multiple impairment ( PMI)
Recent years have seen a remarkable change in the nature and pattern of service provision for this group yet significant challenges remain in meeting their needs. People with PMI are at risk of being excluded in many areas of their lives: thus, there is a need for staff to be very proactive in their approach. Evidence exists about many aspects of the experiences of people with PMI and how best to support them: the need now is to incorporate that evidence in staff training so that it can be better translated into practice. There is growing awareness of the mental health needs of this group, although more work requires to be done in this area.
Good practice
Less information than expected was identified about good practice. This does not mean it does not exist but, rather, that it is not being documented or evaluated. Innovative, user led work within voluntary agencies and organisations of disabled people may not be widely publicised. There is a need for an easy mechanism to share good practice on a regular and informal basis. However, a number of good practice projects and initiatives were identified in Scotland. Many studies discuss the values and principles underlying good practice as well as some of the necessary practical conditions. These include
- putting disabled people at the centre of policy design and service delivery
- adequate, timely and coordinated interventions
- accountability to disabled people
- cost effectiveness
- joined up working
- accessible information provision
- the ability to make choices and feel in control
- age appropriate services
- a multi-disciplinary, holistic approach.
Gaps in knowledge
Finally, the need for further research was identified in relation to most topics. In some cases this is because little previous work has been done, in others, there is a need to examine the impact of new policies or legislation or to evaluate new initiatives. The importance of involving disabled people in planning and conducting studies, 'mainstreaming' disability issues within research where appropriate, and giving feedback to service users who have participated in research, is emphasised.