Scottish Government

Kirsten Stalker, Jacqueline Davidson, Charlotte MacDonald and Anthea Innes
Department of Applied Social Science, University of Stirling

ISBN 0 7559 2951 9

This document is also available in pdf format (148k)

Main Findings

• Services for disabled people in Scotland are patchy and piecemeal, with geographic variation reported in, for example, accessible housing and transport, direct payments and care management. Barriers to meeting disabled people's needs are evident at structural, policy, practice, cultural and attitudinal levels.
• Disabled people frequently report a lack of accessible information about services. Overall, research in the UK indicates their experiences of assessment are not particularly good. Disabled people's priorities sometimes differ from professionals', who may perceive disabled people as service users or social work clients, rather than seeing their lives in the round.
• Being able to make choices and control support arrangements is a priority for many disabled people. Services offering flexibility and responsiveness are highly valued. The majority of research presents disabled people as having needs rather than rights or entitlements.
• Some groups have particularly complex needs which are not always appropriately met by current provision. These include people with early onset dementia, those with sensory impairments and people with profound multiple impairment.
• Proposals for improving services to people with early onset dementia and their carers include age appropriate day care, pre and post diagnosis counselling and on-going assessment. It is argued that both specialist and generic services have a role to play.
• Recurring themes in research about the needs of disabled people from Black and minority ethnic backgrounds include a lack of awareness of services, cultural insensitivity within services and the persistence of certain stereotypes about Black families.
• Disabled people are increasingly consulted about individual studies and specific services, but there is limited exploration of their views across the board. There is great scope for more active involvement of disabled people in setting research, policy and practice agendas in Scotland.

Introduction

The main aim of this six-month scoping study was to review research and related evidence about 'younger' disabled people in Scotland, with a primary - but not exclusive - focus on Scottish material published between 1995 and 2004. Evidence on 15 topics was examined, as summarised below.

Equality and Diversity

Recent research in Scotland has shown a disturbing level of 'hate crime' against disabled people. Research about those from Black and minority ethnic groups reports poor information provision, lack of knowledge about services, cultural insensitivity within services, discrimination within the labour market and benefit system, and a continuing acceptance of certain stereotypes about Black and minority ethnic communities. Differences in 'social power' can deal a double blow to disabled women, for instance when an abusing partner is also the main 'carer': all women's refuges should be made physically accessible. Overall there is a need for greater emphasis on all disabled people being treated with courtesy, dignity and respect.

Needs Assessment

Needs are often discussed in terms of the services deemed necessary to meet them rather than in a wider 'needs-led' context. Research in England has suggested that disabled people find community care assessments 'confusing and fragmentary' and often irrelevant to their real concerns. Needs assessment in Scotland is subject to geographic variation, with local authorities interpreting central guidance differently. The benefits of a holistic, multi-disciplinary approach to assessment are frequently emphasised.

Transition to Adulthood

The main message from this research concerns the difficulties surrounding transition planning, both in terms of involving young disabled people in the process and also ensuring that plans are implemented. While most young people see leisure and friendships as important aspects of moving into adulthood, as well as finding opportunities for study and work, some professionals may tend to see transition more narrowly - in terms of moving young people out of children's services and into adult provision.

Education

Earlier research identified various structural and institutional barriers to disabled people accessing education and achieving their full potential. Low expectations of disabled people among service providers, particularly those involved in transition planning and careers guidance, can hold back some young people. More recent research points to progress in making appropriate provision and in increasing access and inclusion. This is likely to be further improved by current legislative changes.

Employment

Disabled people are poorly represented in the labour market and, even when employed, can be subject to financial exclusion. Many want better structured, more formal support. The benefits of supported employment, as perceived by disabled people, providers and employers, are well documented. There is evidence that the New Deal for Disabled People is failing to address underlying barriers to employment, particularly those relating to exclusionary market and welfare structures. Research suggests that the government could do more to counter certain misunderstandings held by employers about the Disability Discrimination Act ( DDA) 1995.

Benefits

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. Nevertheless, on average, households with a disabled member have incomes 20-30% below that of others. 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.

Housing

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 and rarely takes 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 militate against it.

Transport

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. Disabled people have reported unhelpful attitudes among transport providers. Financial costs can also deter people from using public transport, taxis for example being relatively expensive in all parts of Scotland. There have been improvements in accessibility recently although, overall, change remains slow and patchy.

Goods and services

One in five disabled people experience difficulties accessing goods, facilities and services. 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.

Social care

Disabled people consistently report that being able to exercise choice and control in their support arrangements is of paramount importance. Although take up of direct payments has been slow in Scotland, a wide range of benefits is reported. Disabled people want services to match their lifestyles - to be flexible and responsive to individual needs and preferences. 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.

Health care

The importance of accessible environments and inclusive attitudes and practices, if disabled people are to benefit from health care provision, is stressed. Research repeatedly highlights the importance of collaboration and joint working between health care professionals working in different areas and between health workers and their colleagues in other disciplines. A number of studies examine rehabilitation services, with various strengths and weaknesses identified. There is growing evidence about the healthcare needs of people with profound multiple impairments and those with early onset dementia. Better provision is needed for younger stroke patients.

Equipment and adaptations

Long waiting lists and delays in providing equipment and particularly adaptations are reported, attributed to problems associated with authorisation of funding and a lack of delegated decision-making. This is particularly significant for younger disabled people. There have been considerable 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, which aim to promote equality and social inclusion. An independent review of NHS Wheelchair Services is underway.

Technology and communication

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 prevents many disabled people from going on-line. A number of studies explore the role of speech and language therapists and the reported benefits and limitations of both low- and high-tech communication aids.

Families and carers

Research on this topic needs to be seen in the context of the wider literature on caring, which is a contested field, with debates about the representation of caring as a 'burden', about 'young carers', and about the need to recognise the interdependence within many caring relationships. According to recent Scottish research, carers of disabled people 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.

Unmet need

No national statistics are kept about unmet need, although a meaningful strategy for recording it might be thought essential for future service planning. Unmet needs have been identified in many areas, for example, inclusive leisure opportunities with appropriate support (for young people), access to retail services and legal advice and information. Some good practice initiatives are identified, aimed at overcoming the barriers giving rise to unmet need. There is a widespread need among service providers, school children and the public at large for Disability Equality Training and Deaf Equality Training. Recommendations for tackling unmet need include raising awareness of services among practitioners to ensure appropriate referrals are made and increased use of key working.

People with early onset dementia

The under investigation of people with early onset dementia has been highlighted as has the inadequacy of follow-up services after diagnosis. It is argued that the key to addressing unmet need among this group is a collaborative, multi-disciplinary approach. Evidence indicates that both specialist and generic services have an important part to play, including age appropriate day care, pre and post diagnosis counselling and on-going assessment. The aim of much research in this field is to improve services: this should be seen in the wider dementia context, in which services are generally marginalised and under funded.

People with sensory impairment

There is ongoing debate about various aspects of provision for 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. Assessment arrangements have been described as ad hoc and subject to delay. People with sensory impairment face additional expenditure to meet their daily needs and can experience considerable isolation and prejudice. Unmet needs include information, communication support, rehabilitation and advocacy. The Scottish Executive has recently published an Action Plan for services to people with sensory impairment.

People with profound multiple impairment

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 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

A number of good practice 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 heart of service delivery, early intervention, cost effectiveness, joined up working, accessible information provision, advocacy, a multi-disciplinary holistic approach to assessment and to disabled people's lives generally, the exercise of choice and control, and age appropriate services. An easy mechanism is required for sharing good practice nationally, on a regular and informal basis.

Gaps in the evidence

The topics on which most evidence was found were social care, health care, unmet need and employment; the fewest studies were found about transport. The majority of evidence relates to the statutory sector, with surprisingly little information about voluntary agencies. Little Scottish research has been done on gender and disability, or about LGBT people with physical/sensory impairments.

The need for further research was identified in relation to most topics. In some areas - such as cultural diversity, costs, the numbers, needs and views of deaf-blind people - this is because little previous work has been conducted. In other areas, it is time to examine the impact of recent policies and legislation, such as the new provisions of the Disability Discrimination Act. At the same time, disability issues should not be 'ghettoised' but be included within wider studies wherever appropriate.

Methods

The research was carried out using a six part framework for scoping studies developed by Arksey and O'Malley (2005). This involves identifying the research questions, identifying relevant studies, study selection, charting the data, collating, summarising and reporting the results and, lastly, consulting with key stakeholders. A Microsoft Access database was set up to manage material and catalogue references. The study was informed by useful information and advice from the Scottish Disability Equality Forum.

Reference: Arksey, H and O'Malley, L (2005) 'Scoping studies: towards a methodological framework', International Journal of Social Research Methodology, 8, 1, 19-32.

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Email: socialresearch@scotland.gsi.gov.uk
Website: www.scotland.gov.uk/socialresearch

The report, "A Scoping Study on the Needs of, and Services to, Younger Disabled People including those with Early Onset Dementia in Scotland, which is summarised in this research findings is available on the Social Research website at www.scotland.gov.uk/socialresearch

This document (and other Research Findings and Reports) and information about social research in the Scottish Executive may be viewed on the Internet at: http://www.scotland.gov.uk/socialresearch

The site carries up-to-date information about social and policy research commissioned and published on behalf of the Scottish Executive. Subjects covered include transport, housing, social inclusion, rural affairs, children and young people, education, social work, community care, local government, civil justice, crime and criminal justice, regeneration, planning and women's issues. The site also allows access to information about the Scottish Household Survey.

This scoping study reviewed 223 pieces of research or related evidence about the needs of, and services to, disabled people aged 16-64 in Scotland. The aim was to identify the volume of evidence available on different topics, key emerging issues and debates, and gaps in current knowledge.