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Prime Minister’s Strategy Unit

Improving the life chances of disabled people

Final Report

January 2005

A joint report with:

Department for Work and Pensions Department of Health Department for Education and Skills Office of the Deputy Prime Minister

This report is joint with the following departments:

Contents

Page No

Foreword by the Prime Minister 5

Executive summary 7

  1. Introduction 21
  2. The current situation and its causes 33
  3. Vision and strategy 53
  4. Independent living 69
  5. Early years and family support 101
  6. Transition to adulthood 125
  7. Employment 155
  8. Towards improved delivery 195 9 Implementation 217 Annex A The role of the Strategy Unit 235 Annex B Project team, Sponsor Minister,

Advisory Group and Expert Groups 237 Annex C Bilateral discussions and an overview of the consultation processes 241

The following annexes can be found on the Strategy Unit website (www.strategy.gov.uk):

Annex D A review of focus group consultations

Annex E A review of the main messages from responses to the analytical report

Annex F The results of a literature review of the specific issues faced by disabled people with the most complex needs

Foreword by the Prime Minister

Getting a job or education, travelling between home and work, going for a drink or to the cinema with friends are activities most of us take for granted. But for too many disabled people these ordinary aspects of life remain difficult to achieve.

That is why I asked the Strategy Unit to look at what more we can do to improve disabled people’s opportunities, to improve their quality of life and strengthen our society. Despite considerable progress, disabled people are still experiencing disadvantage and discrimination. Barriers – in attitudes, the design of buildings and policies, for example – still have to be overcome by disabled people, reducing their opportunities and preventing them fulfilling their potential. Too many services are organised to suit providers rather than being personalised around the needs of disabled people.

Nor is this a marginal issue. Up to one in five British adults is disabled and can find themselves cut off from the opportunities others enjoy. And our economy and society, too, lose out if we don’t use their talents to the full.

This Government is committed to improving the life chances of disabled people. Through the Disability Discrimination Act and the creation of the Disability Rights Commission, new rights are being provided and enforced. We are helping disabled people to get back into work through the New Deal and to have personalised support through Direct Payments.

But despite progress, there is more to do. Disabled people remain more likely to live in poverty, to have fewer educational qualifications, to be out of work and experience prejudice and abuse. They still routinely find themselves experiencing poorer services.

This report therefore sets out an ambitious vision for improving the life chances of disabled people so that by 2025 disabled people have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society.

I strongly welcome this report and its recommendations, which will be taken forward and implemented as future Government policy. All sections of society will of course have a role to play in realising our vision. But working together I believe we can achieve the transformation in disabled people’s life chances that we all seek.

Tony Blair

1 Executive Summary

Key Points

This report sets out an ambitious programme of action that will bring disabled people fully within the scope of the “opportunity society”. By supporting disabled people to help themselves, a step change can be achieved in the participation and inclusion of disabled people.

The report proposes that the Government should set an ambitious vision for improving the life chances of disabled people. ‘By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society’.

Future strategy for disabled people should seek to realise this vision through practical measures in four key areas.

(1) Helping disabled people to achieve independent living by moving progressively to individual budgets for disabled people, drawing together the services to which they are entitled and giving them greater choice over the mix of support they receive in the form of cash and/or direct provision of services. In the shorter term, measures should also be taken to improve the advice services available to disabled people and to address existing problems with suitable housing and transport. (2) Improving support for families with young disabled children by ensuring families of disabled children benefit from childcare and early education provided to all children; meeting the extra needs of families with disabled children; and ensuring services are centred on disabled children and their families, not on processes and funding streams. (3) Facilitating a smooth transition into adulthood by putting in place improved mechanisms for effective planning for the transition to adulthood and the support that goes with this; removing “cliff edges” in service provision; and giving disabled young people access to a more transparent and more appropriate menu of opportunities and choices.

(4) Improving support and incentives for getting and staying in employment by ensuring that support is available well before a benefit claim is made; reforming the gateway onto entitlements; providing effective work-focused training for disabled people; and improving Access to Work and other in-work support – all of which will see more disabled people in work, contributing to the Government’s overall targets for employment.

This package of measures extends choice and improves incentives for disabled people. It should deliver improved outcomes for disabled people, their families and wider society in the short, medium and long-term. The Government has accepted all the recommendations in this report. The strategy will now be driven forward by a new Office for Disability Issues reporting to the Minister for Disabled People. Annual reports on progress will be presented to the Prime Minister and published on the web. Implementation of these measures should take account of the needs of older people who are disabled or who have care requirements.

Disability should be distinguished from impairment and ill health

For the purposes of this report, disability is defined as:

A clear distinction needs to be made between disability, impairment and ill-health. Impairments are long-term characteristics of an individual that affect their functioning and/or appearance. Ill health is the short- term or long-term consequence of disease or sickness.

Many people who have an impairment or ill health would not consider themselves to be disabled.

Disabled people face a wide range of barriers

The types of barriers faced by disabled people include:

The population of disabled people is large …

Using the widest survey definition, it is estimated that there are about 11 million disabled adults in the UK – one in five of the total adult population – and 770,000 disabled children. Many of these people would not define themselves as disabled. The majority of these people experience low level impairments – wheelchair users, blind people and Deaf people make up an important minority. The population of disabled people is distinct from and much larger than the three million people in receipt of disability related benefits.

… highly diverse …

The population of disabled people is highly diverse. It includes people from all age groups and across the income and education spectrum.

There are large differences in impairment experienced by disabled people. Because of this, generalisations are often unhelpful. Disabled people with different impairments, from different socio-demographic backgrounds and facing different barriers will have very different day-to-day experiences.

… and changing

Older people are more likely to be disabled than younger people, but over the past thirty years the incidence of disability has risen fastest amongst children – though it is not clear to what extent this simply reflects increased reporting. Trends in impairment show an increasing number of children being reported as having complex needs, Autistic Spectrum Disorders and mental health issues. Among adults there are increasing numbers of people reporting mental illness and behavioural disorders, while the number of people reporting physical impairments is decreasing. This report is primarily about the needs of disabled people below pension age, but many of the proposals in the report will help to improve the life chances of disabled people across the entire life-course.

Disabled people experience disadvantage in many aspects of daily life

Compared with non-disabled people, disabled people are:

However, the cause of this appears to work in both directions: people are also more likely to become disabled if they have a low income, are out of work or have low educational qualifications.

The extent of the disadvantage is especially acute for some specific groups of disabled people

Disabled people often experience multiple forms of labour market disadvantage1:

For these groups there can be cumulative problems which add up to an even bigger impact on their life chances and quality of life.

Disabled people with some specific impairments face particularly poor outcomes. People with mental health conditions or learning disabilities have poorer educational qualifications, do much less well in the labour market and generally have lower incomes than other disabled people.

Disadvantage among disabled people has significant economic and social costs

The adverse outcomes experienced by many disabled people reduce quality of life both for disabled people themselves and for their families. Many disabled people

1

Data in this paragraph are from the Labour Force Survey (2001/02).

feel isolated, unwanted and a burden to society. Their families – parents, children and siblings – can also face negative attitudes, poverty and social exclusion. Many feel that they spend far too much time fighting bureaucracy – when they should be receiving the support they need to help themselves.

This has economic and social costs. Many disabled people are unable to make an effective contribution to their local community and economy

– yet with the right support, they could be working and actively taking part. Disabled people currently out of work represent a significant pool of potential skills and abilities – if only that potential could be tapped, and expectations raised. Instead of being empowered to work, earn, spend and pay taxes, too many disabled people are left to depend on benefits and government support. And, poor economic outcomes during their working lives prevent disabled people from providing comfortably for old age, thus prolonging disadvantage into retirement.

Government intervention is justified on a number of grounds

Government intervention to improve the life chances of disabled people is a key element of building a genuine “opportunity society”. Social justice requires government to take steps to extend opportunities, choice and empowerment for disabled people, promote diversity and improve standards of living for all.

Such intervention will, in many cases, also bring net benefits to the economy – for example, through a widening of the skills base and an increase in productivity.

And in some cases, intervention will be justified on straight value for money grounds – for example, if more disabled people are helped into work, there will be increased tax revenues and lower spending on incapacity benefits.

Tackling these barriers is not a matter for government alone

Disabled people themselves, employers, health professionals, educators, local communities, and providers of goods and services all have a key role in improving the life chances of disabled people.

Disabled people’s experience of government support and services needs to change. Too often disabled people feel that they are fighting a system which is fragmented, complex and bureaucratic, and which does not put the needs of disabled people at the heart of service provision. Public service reform and investment has not yet benefited disabled people to the extent it should.

This report sets out an ambitious vision for improving the life chances of disabled people

A step change is needed in the way the disadvantage faced by disabled people is tackled. This cannot happen overnight – which is why

this report has established an ambitious 20-year vision:

“By 2025, disabled people in

Britain should have full

opportunities and choices to

improve their quality of life, and

will be respected and included as

equal members of society.”

A radical strategy is needed to realise this vision – building on the progress made since 1997

This report sets out a long-term strategy for change. The strategy will empower and involve disabled people, personalise the support they receive and remove the barriers to inclusion and participation. It will build on the considerable progress that has already been made in promoting and protecting disabled people’s rights, in improving choice and in supporting disabled people in education, employment and other forms of participation.

The centrepiece of the strategy must be the promotion of independent living

Independent living sits at the heart of this strategy. Independent living is not just about being able to live in your own home – though that is often part of it for many disabled people. Rather, independent living is all about providing disabled people with:

This does not mean that disabled people are expected to do everything for themselves – but they are expected have the biggest say in what they do and how they live their lives, and to take responsibility for their lives. The independent living agenda cuts across a number of different policy areas – social care, health care, housing, transport, education and beyond.

This report sets out first steps towards achieving the vision

Practical measures identified in this report fall under four main headings:

(1) Independent living

A way of supporting independent living should be put in place

A new way of supporting disabled people is needed, focused on the goal of independent living. Over time, this new approach should bring together existing funding streams that are currently fragmented, and which require disabled people to go through multiple assessments in order to access different forms of support.

The new approach should also allocate available resources from within the overall budget, according

to individual needs. Allocations should be in the form of individualised budgets that are made transparent to the disabled person. Disabled people – and the families of disabled children – should be able to choose whether they take their individualised budget in cash, in some combination of services and cash payments, or entirely as services commissioned by their local authority. The budgets should be used to get whatever type of support the individual needs – whether it is equipment, personal assistance, housing adaptations, help with transport to work or something else entirely.

The overall aim of the new approach should be to make sure that resources are allocated and services delivered in ways that:

An important first step towards this new approach will be to test out some of the options

The new approach will require some radical changes to the way in which budgets are organised and services are delivered across a wide range of policy areas, government departments and local service providers. These changes will take time to get right – this report envisages that, subject to evaluation evidence and availability of resources, national roll-out of a new system could take place by 2012.

Some of the elements for the design of this system will need to be piloted – this report envisages a staged approach. In the short term, the focus should be on working with local authorities – and where appropriate with Local Strategic Partnerships taking forward Local Area Agreements – who are already taking steps to introduce elements of this system. The aim should be to build a coherent evidence base, without adding to local authority burdens. In parallel, the case should be considered for an invest-to-save fund to be bid for in Spending Review 2006. The aim of such a fund would be to provide up-front resources to facilitate further evidence-building and to introduce the changes required by the new system.

Disabled people should be at the heart of these initiatives

One of the key ingredients for developing this new approach should be the direct involvement of disabled people, primarily through local Centres for Independent Living. The capacity within these organisations should be increased to enable them to play an effective part in supporting disabled people to achieve independent living. Centres for Independent Living are potentially well-placed to provide advice and information, advocacy support and practical assistance in managing individualised budgets.

Steps should also be taken to improve the provision of advice, housing and transport options for disabled people

Some needs of disabled people are so acute that it would be inappropriate to wait until the long-term to implement changes. This report therefore recommends specific changes to secure:

(2) Early years and family support

The early years are a critical period for disabled children – many of whom live in child poverty

Child development and future life chances are critically affected by the support and services received by young disabled children and their families. Targeting support at these families will also play a major role in delivering the Government’s target to abolish child poverty – children from lower income households are more likely to report long standing illness or disability and mental health issues, reflecting a two-way relationship between low income and disability.

Families of disabled children should have access to individualised budgets – providing choice and control across multiple transitions

Families with young disabled children have additional needs which should be met. They may need specialist equipment or require housing adaptations. These needs may be specific to the child – such as assistive technology – or be part of the wider implications of having a disabled child with significant needs – such as need for home-based support.

Just like disabled adults, families of disabled children should, in due course, be able to access individualised family budgets to meet the additional needs arising from the child’s impairment. These would address the needs of the family as a whole arising from the child’s impairment, and so give the family choice and control over the support and services they receive.

Families of disabled children must be included in the support provided to all families

Early years and family support is a dynamic policy area with many new initiatives aimed at strengthening development and support for very young children. It is crucial that disabled children, alongside their non-disabled peers, are able to benefit from these reforms.

In the future, all national evaluations of children’s services – including Sure Start – should specifically assess the impacts on families with disabled children, and recommend specific actions to address barriers to their inclusion. In addition, guidance for evaluations of children’s services carried out at a local or regional level should be developed to make sure they take account of the needs of the local disabled children’s population.

Key services for disabled children and their families must be centred on their needs, not on processes and funding streams

The fragmentation, complexity and bureaucracy of service provision are particularly acute for families of disabled children. This can create artificial barriers and inefficient restrictions – such as provision of transport between a child’s school and home, but not including leisure facilities.

Individualised budgets will in due course play a key role in overcoming these barriers. But there are a number of key services for which disabled children and their families must have effective access as soon as possible:

Disabled children and their families should have timely access to the equipment they need, when and where they need it. This will require common assessment processes and funding across health, education and social services, and will mean that equipment must be updated and maintained without delay.

All families with a disabled child should receive childcare provision which is sustainable, high quality, flexible, affordable and accessible – in other words, implementation of the 10-year Strategy for Childcare should include disabled children and their families on equal terms with non-disabled children and their families.

And a key worker should be in place for all families with high needs, to provide them with information, improve communication and coordinate early intervention. Availability of key workers should be considered for inclusion in the assessment of local social care and education services.

(3) Transition to adulthood

Effective support needs to remain available for disabled young people

The benefits of early years intervention will be lost if the transition through childhood and into adulthood is not managed

effectively. There are three key ingredients needed for effective support for disabled young people at the transition to adulthood.

Over time, individualised budgets should mean a seamless transition from childhood to adult services

Individualised budgets should, in due course, give young disabled people and their families increased choice and control.

In the shorter term, child and adult services should overlap to remove the ‘cliff edge’ in provision experienced by many disabled young people

Many disabled teenagers, especially those with learning difficulties, could benefit from children’s services well beyond the current age cut-offs for those services. To address this, child services such as Children’s Trusts and the Family Fund should move to include all disabled people up to the age of 25, and should support disabled young people who are living at home or moving into independent living. At the same time, adult services such as the Expert Patients Programme should be made increasingly available to disabled young people.

Improved transitions require greater family support, personalisation, continuity, and opportunity

Alongside these other measures, transitions to adulthood should be improved for young disabled people through:

(4) Employment

Recent government policy has delivered some significant improvements – but more is needed to improve the labour market status of disabled people

The Government has introduced a number of changes since 1997, including the New Deal for Disabled People, extensions to the Disability Discrimination Act 1995, the national minimum wage and Pathways to Work. These changes have improved incentives and assistance for people to move off benefits and into work, and have placed additional requirements on employers to employ disabled people. However, more is needed to improve the labour market status of disabled people, and to raise expectations for what disabled people can achieve in work. This report supports the national implementation of Pathways to Work, subject to evaluation and subject to resources being made available.

Future government policy should be designed to ensure that in twenty years time any disabled person who wants a job and needs support to get and keep a job anywhere in the country should, wherever possible, be able to do so. Any employer wanting to employ a disabled person should be able to find the right person and the right support. Recommendations to promote independent living will play a key role – but additional measures will also be needed.

Effective early intervention should help disabled people to stay in touch with the labour market

Too often, employment-focused support is not accessed until disabled people have spent some time out of work and away from the labour market – either because they have never worked, or because they have been in a period of long-term “sickness absence”. Interventions at this late stage can be inefficient. This report makes two sets of recommendations which should ensure that support is provided earlier on in the process:

Steps should be taken to improve the employability of disabled people

There are two key elements to improving the employability of disabled people:

• Disabled people need to have the skills that employers want – compulsory education needs to play a key role in making sure that this is the case, but there should also be a role for more effective training and access to “lifelong learning” for disabled people;

• Disabled people should be able to have ready access to the personal support they need in order to work – this would require further improvements to the already successful Access to Work programme. At the same time, all employers should be able to access the effective advice and financial support to make the necessary workplace adjustments.

Disabled people should be able to access ongoing support personalised to their specific circumstances

Building on the success of the “New Deal” schemes, government is moving increasingly towards a menu-driven approach. People should be able to access support from a range of choices, focusing their own package of support on their own personal needs.

This report endorses the same approach for disabled people, ensuring that support is provided according to people’s needs, and is focused on enabling disabled people to maximise their potential and fulfil their aspirations. Case managers should be made available to help disabled people make the right choices, building on the way in which Jobcentre Plus personal advisers have been used in Pathways to Work. Over time, this should contribute towards achievement of much higher employment rates for disabled people, as a contribution to the achievement of a higher employment rate for the population as a whole.

Employers have a key role to play – but need to be able to access the right advice and information

This project has taken advice from an employers’ working group convened by the National Employment Panel. On the basis of this advice, this report recommends that employers should lead a campaign on the business benefits of employing disabled people with input from DWP and DTI. This should be backed up by improved access to information targeted specifically at employers.

All government departments will be responsible for driving forward this strategy and the implementation of these practical measures

The Government has accepted all the recommendations in this report. It will be the collective responsibility of all government departments to ensure that the recommendations in the report are taken forward. The report also establishes an Office for Disability Issues – reporting to the Minister for Disabled People – to help coordinate disability policy across government.

Annual reports on progress will be presented to the Prime Minister

Ongoing commitment to the vision and strategy in this report will be secured through a requirement for an inter-departmental report on progress to be presented annually to the Prime Minister and then published on the web.

Implementation of this package of measures should:

Successful implementation of the proposals in this report will depend, where necessary, on the appropriate level of funding being made available as a result of successful outcomes from future spending reviews. But in overall terms, a more efficient approach which promotes increased economic participation should deliver a net economic benefit in the medium to long term.

Chaper 1: Introduction

Summary

The main objective of the Strategy Unit (SU) project was to identify ways of improving the life chances of disabled people.

The report focuses on disabled children and disabled people of working age. However, the vision and strategy have been designed to ensure consistency with the approach to people over working age.

This report presents the project’s conclusions and recommendations. The UK Government has made a commitment to implement the project’s recommendations in England and, where appropriate, across the UK.

The project was carried out by a multi-disciplinary team including team members with experience in economics, social policy, local government and with expertise in disability issues.

This introductory chapter sets out the context and the aims of the project (Section 1.1). It then describes the scope and limitations of this report (Section 1.2). Recent developments in legislation and policy are highlighted in Section 1.3. The next section (1.4) defines some of the key terms and concepts used in the report. Details of how the project was conducted and who participated are provided in Section

1.5. Sections 1.6 and 1.7 outline the main phases of the project and next steps. Finally, Section 1.8 sets out the way in which the report is structured.

1.1 Project context

The Strategy Unit was set up in 2002 and reports to the Prime Minister through the Chancellor of the Duchy of Lancaster and the Cabinet Secretary. Its core business is providing the Prime Minister and government departments with a capacity to analyse major policy issues and design strategic solutions. (See Annex A for more details.)

The overall aim of this project was to identify ways of improving the life chances of disabled people

The Government has recognised that disabled people do less well than non-disabled people across a wide range of indicators of quality of life. Disabled people interact with a

range of government services, and face barriers that cut across departmental responsibilities. In this context, the Strategy Unit was asked by the Prime Minister to carry out a project which would:

This report presents the project’s conclusions and recommendations

The project was announced in December 2003, and published an Interim Analytical Report in June 2004. This report marks the end of the project, and presents the projects conclusions and recommendations. The report has been accepted by the UK Government and there is a commitment to implement the project’s recommendations in England and, where appropriate, across the UK. Options for implementation will also be discussed with the devolved administrations. The report should be seen as the start of a process of policy reform that will improve the life chances of all disabled people and contribute to closing the attainment gap compared with non-disabled people.

1.2 Scope and limitations of this report

It is important to clarify from the outset groups that will be within the direct remit of this report

Disability affects all age groups. Some impairments and illnesses are particularly associated with ageing, while some people carry lifetime disability into retirement. This report is primarily about the needs of disabled people below pension age, but it is important to remember that those needs do not stop – and for some people only start – after pension age. Many of the proposals in the report will help to improve the chances of disabled people across the entire life-course, but this project has not considered in detail their interaction with policies and requirements affecting elderly people. The implementation of the recommendations will need to achieve consistency and avoid differences in treatment that are based purely on age2.

The Government’s Special Educational Needs (SEN) Strategy – Removing Barriers to Achievement – set out the Government’s approach for supporting the learning of children with SEN. The Strategy was launched in February 2004 and will need to be fully evaluated once

2

A consultation document on improving access to services to older people was published by the Department for Work and Pensions and the Local Government Association in August 2004. The proposals, published in a document called Link-Age, aim to simplify access to services and help by linking up provision across and beyond government, initially between the Pension Service and local authorities.

it has had time to take effect. For this reason, this report has not developed detailed proposals for disabled children in primary and secondary education.

There are limitations to the data available about the disabled population

Data on the numbers of disabled people and their characteristics are taken from population surveys. There are a number of limitations to these data. The accuracy of population estimates based on survey data will depend whether the sample used is representative of the population. Furthermore most data on disability relies on self-reporting, and for certain impairments – particularly mental health conditions

– under-reporting may occur. To increase the reliability of estimates, a large sample size is needed – but is often not available, particularly when data is disaggregated by impairment type. This means that it is not always possible to disaggregate the population and discuss specific characteristics such as average education levels or employment rates reliably. Such analysis has therefore been left out of this report.

In devolved areas of policy the recommendations will apply to England only

The devolved administrations of Scotland and Wales have responsibility for devolved issues; therefore the conclusions in these areas apply to England only.

The devolved administrations may wish to consider if the actions identified in these areas are appropriate for them and, if so, how to take them forward. More work will be needed to identify the implications of some of the proposals within the devolution context.

The report does not seek to amend existing legislation pertaining to the Disability Discrimination Act (1995) and the new Draft Disability Discrimination Bill

The Disability Discrimination Act (DDA) and the new Disability Discrimination Bill are described in section 1.3. The draft bill represents a significant step in extending civil rights and opportunities for disabled people. The existing and forthcoming legislation together form an important backdrop to this report, and are taken as a given for the forseeable future. The same is true of progress towards a new Commission for Equality and Human Rights (CEHR), which will bring disability together with other aspects of the equality and diversity agenda (see section 1.3).

1.3 Recent developments in legislation and policy

There have been many important policy developments that should have a positive impact on disabled people’s life chances

This report builds on the considerable progress that has been made in recent years.

* Disability Discrimination a wide range of measures Act 1995 – the 1995 DDA Act recommended by the Disability was the first anti-discrimination Rights Taskforce. A particularly legislation specifically about significant amendment is a new disabled people. It enshrines in duty placed on the public sector law disabled people’s rights to ‘to promote disability equality’ participate in civil society through (this parallels the Race Relations application to employers, service Amendment Act)4. providers, landlords and schools and colleges. Some elements • The Commission for Equality and became law for employers in Human Rights – the Government December 1996. Others were announced in October 2003 plans introduced over time3. to set up a new Commission for Equality and Human Rights. It is

3 For service providers (e.g. businesses and organisations): -since December 1996 it has been unlawful to treat disabled people less favourably than other people for a reason related to their disability;

-since October 1999 they have had to make reasonable adjustments for disabled people, such as providing extra help or making changes to the way they provide their services; and

-from this year (2004) they have had to make reasonable adjustments to the physical

features of their premises to overcome physical barriers to access. For employers, those with fewer than 20 employers were excluded. This exclusion threshold was changed to 15 employees in December 1998. From 1 October 2004, the small exclusion was ended. For education providers, new duties came into effect in September 2002 under Part IV of the DDA amended by the Special Educational Needs and Disability Act (SENDA).

4

The draft bill will also amend the DDA by: covering transport vehicles in Part 3; extending duties on reasonable adjustments to landlords and others who manage rented premises; covering larger private clubs; extending the rights of disabled local councillors; and bringing people with HIV, cancer and multiple sclerosis into scope.

to sustain or improve their ability to live independently. The programme has for the first time allowed the provision of housing-related support services to be properly planned at the local level, allowing services to reflect local needs and priorities and to be better integrated with other local services.

assisting those people moving onto Incapacity Benefit to return to work. The aim is to enable people to overcome obstacles to work, by focusing on their capabilities and thereby challenging the belief that people with health conditions are incapable of doing any work. It has been piloted in three areas since October 2003, and a further four areas since April 2004.

government Green Paper due

to be published later this year.

1.4 Definitions and concepts

What is disability? And who are disabled people?

Disability is subject to a number of different definitions

Disability is defined for this project as the disadvantage experienced by an individual as a result of barriers (attitudinal, physical, etc.) that impact on people with impairments and /or ill health.

Disability is distinct from both:

Many people who have an impairment or ill health would not consider themselves to be disabled.

For young people, “Special Educational Needs” is another important concept. This term was first recognised in the 1981 Education Act and includes children with “a learning difficulty, which may be the result of a physical or sensory disability, an emotional or behavioural problem, or developmental delay”.

Box 1.1: The difference between disability, impairment and ill health

Most people have some form of impairment or ill health at some point in their lives. This may be temporary (e.g. pneumonia) or permanent (e.g. blindness, rheumatoid arthritis). Many people with an impairment or ill health do not necessarily think of themselves as disabled. But many of these people would be defined as disabled under a range of measures – and the extent of their disadvantage will be determined by the barriers they face and by the support they receive for their individual needs:

• An individual may be hard of hearing. Someone with this form of impairment is disabled because communication generally relies on being able to hear effectively. But if this person has access to a digital hearing aid, the extent

5 The distinction between impairment and ill health is not always clear-cut. Alternative terminology speaks of “long-term conditions” or “chronic disease”, both of which focus primarily on permanent ill health.

of their disadvantage will be relatively small.

• Another person may have Multiple Sclerosis. This is their impairment, and if they are a wheelchair user, they may be disabled because public transport is inaccessible to them. They may also develop ill health, because they are more susceptible to adverse effects from colds or the flu. Ill health may also result from disabling barriers: for example, lack of an appropriate wheelchair cushion may lead to pressure sores.

The phrase “disabled people” can therefore include anybody who is disadvantaged by the way in which the wider environment interacts with their impairment or ill health. In practice, “disabled people” are defined in different ways to include or exclude different groups. There is no single agreed definition.

Box 1.2: There are large numbers

of disabled people, and important

trends changing the characteristics

of disabled people

are increasing numbers of children with complex needs7.

But it is clear that:

6 ONS (2004) “Living in Britain: Results from the 2002 General Household Survey” 7 Family Resources Survey G.B. (2002-03), DWP

For example, in considering employment, the primary focus here is on disabled people who are out of work. Many of these people – but not all – are claiming incapacity-related benefits. But many people claiming incapacity-related benefits would not consider themselves to be disabled.

Box 1.3: The heterogeneity of the disabled population

There are three main sources of the heterogeneity of disabled people:

1.5 Project participants and processes

Composition of the Strategy Unit team

The project was carried out by a multi-disciplinary team (see Annex B), including team members with experience in economics, social policy, local government and with expertise in disability issues.

Links with other government activities and external groups

The team has had regular meetings with the study’s Sponsor Minister, Maria Eagle (Minister for Disabled People, Department for Work and Pensions). The team has also met regularly with the Project Advisory Group. The group, chaired by Maria Eagle, was made up of Ministers, external experts and civil servants. In addition, the SU appointed expert advisory groups to assist with different aspects of its analysis. Full details are given in Annex B.

Throughout the study, the team has gathered external input. It has held a number of meetings and discussions with a wide range of stakeholders and experts from among disabled people and their representatives, as well as other interested organisations (see Annex C). The team has also had regular contact with representatives from key government departments with an interest in this area, as well as with representatives from the devolved administrations.

In addition to contact with officials,

the team organised extensive focus group consultations which included disabled people and carers to support the development of the policy options (see Annex D). Written responses were received from just under 100 correspondents including individual responses and from a range of organisations (see Annex E).

1.6 Phases of the study

Phase one of the project was an extended scoping phase, running until early February 2004. The Strategy Unit held meetings with representatives of disabled people, service providers, government departments and other organisations. The Strategy Unit also reviewed the literature and evidence base on disabled people's life chances. The purpose of this phase was to establish an overview of the evidence and identification of main messages. At the end of this phase, the Strategy Unit proposed some areas for more detailed analysis in Phase Two of the project. This work highlighted the importance of transition points, and crosscutting themes around policy design and delivery.

Phase two of the project was an analytical phase, during which the SU undertook detailed analysis of the issues within the framework identified in phase one. During this phase the SU met a number of stakeholders and experts from inside and outside government. At the end of this phase, the SU published for comment an Interim Analytical Report8. The report drew together the evidence of the disadvantages that disabled people experience, and provided an analysis of the key barriers, an assessment of the current policy map, and outlined some alternative approaches.

Phase three of the project, the policy recommendation phase, ran through the summer and involved extensive consultation through focus groups, expert groups and bilateral meetings – as well as written responses. This phase saw the development of the vision, strategy and specific recommendations included in this report.

1.7 Next steps – implementation of the report

Government collectively will be responsible for implementation

This report has been accepted by the UK Government and a process of implementation has been agreed. This process will involve all government departments with responsibility for policies which impact on disabled people’s life chances. The day-to-day lead for implementation will, in due course, transfer to the new Office for Disability Issues (see Chapter 8). Accountability for the implementation of the report will be through a Ministerial Group, reporting on an annual basis to the Prime Minister. As implementation is taken forward, all departments will ensure that there is appropriate opportunity to comment on the

The report remains available on the Strategy Unit website at www.strategy.gov.uk

details of policy changes.

There is a three-month opportunity to provide feedback to the Strategy Unit on this report

The Strategy Unit would welcome feedback on this report and on the project as a whole. Feedback should be sent to:

Disability@cabinet-office.x.gsi.gov.uk

Or to: Strategy Unit Disability Team Cabinet Office 4th Floor, Admiralty Arch The Mall London SW1A 2WH

The deadline for responses is Friday 15th April 2005.

The report is available in a range of alternative formats. Please contact the Strategy Unit at 020 7276 1881 or

strategy@cabinet-office.x.gsi.gov.uk

for further information.

1.8 Structure of the report

The remaining chapters of this report cover the following issues.

Chapter 2 draws on material from the Interim Analytical Report and from other sources in order to establish the extent of the disadvantage faced by disabled people, the costs of that disadvantage, and how the picture is changing over time.

Chapter 3 sets out how and why government should address the problems identified in Chapter 2 to improve the life chances of disabled people. The chapter sets out the vision that government has committed to achieve and the key goals that need to be reached.

Chapter 4 on independent living puts forward arguments for enabling disabled people to fulfil their roles and responsibilities as citizens.

Chapter 5 looks at early years provision and family support.

Chapter 6 considers transition to adulthood for disabled young people.

Chapter 7 sets out an overarching vision that disabled people must be empowered, supported and well-equipped in order to enhance their employability. It also proposes measures to engage employers in recruiting and retaining disabled people.

Chapter 8 provides an assessment of how the programme of reform set out in previous chapters can be delivered effectively, focusing in particular on the application of the public service reform agenda to the services provided to disabled people.

Chapter 9 on implementation sets out recommendations for improved arrangements in the design and delivery of provision led by a new Office for Disability Issues.

Annexes provide further details on the preparation of this report and background analysis of some key issues. Annexes A to C are included in this report, and cover:

• organisations consulted and submissions received (Annex C).

Annexes D to F are published separately from the main report, and should be seen as background accompanying analysis. They can be found at www.strategy.gov.uk.

Summary

The population of disabled people is large – about 11 million adults and 770,000 children in the UK, using the widest survey definition. This equates to more than one-in-five adults, and around one-in-twenty children – though many of these would not see themselves as disabled, and many do not claim disability-related benefits or use services aimed specifically at disabled people.

The population of disabled people includes wheelchair users, blind people and Deaf people – these are an important minority of the total, but the majority of disabled people have other (often less visible) impairments. Among adults, trends in impairment show increasing numbers reporting mental illness and behavioural disorders, while the number of people reporting physical impairments is decreasing. Although older people are more likely to be disabled than younger people, trends show an increasing number of children reported as having complex needs, Autistic Spectrum Disorders or mental health issues.

Disabled people are doing less well than non-disabled people across a wide range of indicators and opportunities. Disabled people are more likely to achieve lower outcomes in terms of employment, income and education. They are more likely to face discrimination and negative attitudes, and often experience problems with housing and transport.

Poor outcomes are both a cause and a consequence of disability. Low incomes, non-employment, and low education all independently increase the probability of someone becoming disabled. Many of these risk factors are amenable to policy intervention. Often the onset of ill health or impairment deepens pre-existing disadvantage.

The extent of the disadvantage is especially acute for some specific groups. For example, although some black and minority ethnic groups are somewhat less likely to report impairment than the white

population, they are more likely to experience poor outcomes if they are disabled. People with mental health conditions or learning difficulties also face particularly poor outcomes.

The disadvantage faced by disabled people imposes significant economic and social costs – on disabled people, on their families and friends, on the wider community and on the economy. Instead of being empowered to participate and be included, too many disabled people are left to depend on benefits and government support.

This introductory chapter provides an overview of the evidence on disabled people’s life chances. Section 2.1 outlines the scale of the challenge faced. The relationship between disability and life chances is discussed in Section 2.2. Section 2.3 then turns to examine the costs of disadvantage for disabled people, their families, the economy and wider society.

2.1 The scale of the challenge

There are currently around 11 million disabled adults in the UK, equivalent to 21% of the population9 .

Over the last 30 years there has been an increase in the number of people reporting an impairment

Since 1975, the fastest growth in numbers has been for children – from 476,000 disabled children under the age of 16 in 1975, to 772,000 in 2002. This represents

millions

14 12 10

Retired

8 6

Working

age 2

4 Children

0

Figure 2.1: Number of people who reported a limiting long standing illness or disability by age, UK

1975 1981 1985 1991 1995 1996 1998 1998 2000 2001 2002 Source: ONS (2004) Living in Britain: Results from the 2002 General Household Survey 9ONS (2004) “Living in Britain: Results from the 2002 General Household Survey” Figure 2.2: Percentage of the UK population who reported limiting longstanding illness or disability by age

60

75+

50

65–74

40

45–64

30

16–44

20

5–15

10

0–4

0 1975 1979 1983 1987 1991 1995 1999 2003

Source: ONS (2004) Living in Britain: Results from the 2002 General Household Surve

an increase of 62%. Possible explanations include increasing prevalence of impairment among children, children with complex conditions surviving longer, increased diagnosis, increased reporting and/or overall increases in the population. Over the same period the number of adults reporting impairment has increased by 22% from 8.7 million to 10.7 million people.

One in twenty children under 16years-old is disabled and there are increasing numbers of children with complex needs

Evidence suggests that the numbers of children with complex and significant needs appear to be increasing. Increases of this type are partly associated with medical advances enabling severely disabled children to survive infancy and to live longer. One study estimates an 11% increase in paediatric artificial feeding at home between 2001 and 2002, which is associated with home delivery and support services10.

There has also been an increase in the likelihood of diagnosis and/or prevalence of both Autistic Spectrum Disorders and mental health issues in young children. The Medical Research Council states that Autistic Spectrum Disorders (ASD) affect approximately 60 in every 10,000 children under 8-years-old, while narrowly-defined ASD affects 10-30 in every 10,000 children11. These estimates “make autism spectrum disorders far more common than was previously recognised”12.

10British Artificial Nutrition Survey (2004) ‘Trends in artificial nutrition support in the UK between 1996 and 2002’.

11Medical Research Council (2001) ‘MRC Review of Autism Research: Epidemiology and Causes’.

12MRC (2001).

Patterns of impairment differ Multiple Sclerosis, HIV /AIDS or between disabled adults cancer from the point at which and children adverse effects emerge13, as well

Definitions of disabled people as people with impairments as typically cover people with a wide wide-ranging as back pain, range of impairments and ill health. depression and heart conditions. As Section 1.4 has observed, this is Disabled young people have a

one reason why the population different impairment profile from of disabled people is so diverse. adults – they are more likely to haveIn addition to wheelchair users, a learning difficulty, and initial onset blind people and Deaf people, of mental health problems often

the population of disabled people occurs in young adulthood14. can include people with long-term progressive conditions such as

Figure 2.3: Number of disabled adults by gender, age and impairment, GB

men women

Difficulty in hearing Skin conditions, allergies Epilepsy

16-24

Difficulty in seeing

25-39

40-49

Mental illness, phobia, panics

50 to 59/64

Learning difficulties Progressive illness n.e.c. Stomach, liver, kidney, digestion Depression, bad nerves Arms, h&s Diabetes Other Chest, breathing problems Legs or feet Heart, Blood Pressure or Circulation Back or Neck

600000 400000 200000 0 200000 400000 600000 Source: Annual Local Area Labour Force Survey 2001–02

13The Government has announced that the new Disability Discrimination Bill will bring those who have progressive conditions, but who do not yet experience significant impairment within the scope of the DDA. The Government will also use the bill to remove the requirement that a mental illness must be “clinically well recognized” before it can count as an impairment.

14SEU (2004) Mental health and social exclusion. The Stationery Office. Young Minds found between one in four and one in five young people experience mental health problems by age 16.

For disabled adults, the pattern of and men with depression or mental impairment is broadly similar across illness are most likely to be in the gender. The most commonly 25–39 age group15. reported impairments for both men

and women are problems of the The disabled population is changing. back or neck, the heart or Among adults, trends in impairment circulation, legs show that an increasing number of or feet or breathing problems. people report mental illness and

behavioural disorders, while the A higher proportion of women number of people reporting physical report depression or ‘other’ impairments is decreasing16. impairments. Fewer women than men report problems with their The prevalence of impairment heart, blood pressure or circulation, differs across ethnic groups

diabetes, or report chest or Black and minority ethnic (BME)

breathing problems. For most groups are less likely to report impairments the prevalence impairment than the white increases with age – though men population. Differences in age with learning difficulties are more structure account for much of this likely to be in younger age groups,

Figure 2.4: Percentage of people reporting a limiting long-term illness in England and Wales by ethnic group

30 25 20 15 10 5 0

Lower prevalence than white population*

UK PopulationWhite: BritishWhite: IrishWhite: Other WhiteWhite and Black CaribbeanWhite and Black AfricanWhite and AsianOther MixedIndianPakistaniBangladeshiChineseOther AsianBlack CaribbeanBlack AfricanOther BlackOther Ethnic Group

Source: Census 2001, ONS

15Annual Local Area Labour Force Survey 2001–02. 16DWP (2003) Incapacity Benefits dataset, 5%.

variation in prevalence, as in the UK BME groups tend to have a younger population structure. But even after controlling for this age effect, people of Indian, Pakistani, Bangladeshi and Chinese origin remain less likely to report that they are disabled. These lower rates may be influenced by cultural differences in self-reporting across ethnic groups17.

Despite the lower levels of reported impairments, evidence suggests that disabled people of BME origin are more likely to experience disadvantage18. Families from BME groups with disabled children have a lower take-up of services, and often feel less informed or able to access the system. People from BME groups tend to present to mental health services later, sometimes following contact with the criminal justice system. They may experience discrimination both on grounds of health status and ethnicity in seeking employment. A high proportion of the BME population lives in deprived areas and fall into disadvantaged groups – where a higher incidence of impairment would be expected19.

Figure 2.5: Variation in the risk of becoming disabled by region, controlling for age, employment status and occupation

0.015

0.01

0.005 0 -0.005 -0.01

-0.015 -0.02

Statistically lower risk than Merseyside MerseysideTyne & WearWalesW Mids urbanRest of NorthInner LondonWest Yorks. Rest of W MidlandRest of Yorks & HumbOuter LondonSouth YorksScotlandSouth WestE AngliaRest of SEE MidsRest of NWGtr Manchester

Source: Burchardt (2003) using BHPS. Risk is given relative to Merseyside. The arrow indicates the average risk of a person within that region becoming disabled in any one year, the length of the line indicates the 95% confidence intervals.

17

There is some difference in prevalence of specific impairments across ethnic groups, however sample sizes are too small for such differences to be reported in any meaningful way.

18Mental Health and Social Exclusion (2004) Social Exclusion Unit. 19Some of these issues are explored in Annex F to this document.

There are some regional differences in the prevalence of disability

Regional differences in the risk of becoming disabled do exist, but these do not show a systematic pattern. Links with regional de-industrialisation are not clear, as areas such as Merseyside show high risks of onset of impairment and/or ill health while the risk in nearby Greater Manchester is significantly lower.

The population of disabled people is distinct from the population claiming disability-related benefits

3.08 million people claim some form of disability-related benefit20,21. There are a number of different benefits, both specific and generic, that disabled people may receive. This report is primarily about disabled people, rather than those claiming disability-related benefits. There are significant overlaps between these two groups, but there are also significant differences.

Table 2.1: Types of benefits and tax credits for disabled people

Extra costs benefits • Disability Living Allowance (DLA) Help with the disability-related • Attendance Allowance extra costs of severely disabled (over SPA) people

Earnings replacement benefits • Jobseeker’s Allowance (JSA) Provide an income for people who • Incapacity Benefit (IB) are not in work • Severe Disablement Allowance

(now subsumed into IB)

Means-tested benefits

and tax credits • Income Support (IS)

(i) provide a minimum income • Working Tax Credit level; • Disabled child element of Child

(ii) help low income people with Tax Credit

housing costs • Housing Benefit

Compensatory benefits • War Disablement Pension

Compensate people who became • Industrial Injuries Disability disabled as a result of military Benefit service or their employment

20

DWP (2004) Client Group Analysis.

21

“Disability-related benefit” here refers to any benefit received because the individual has an impairment. “Incapacity-related benefits” are a subset of disability-related benefits, and refer to any income replacement benefit that someone with an impairment receives because of their impairment – specifically this includes incapacity benefit (IB) payments, incapacity benefit credits, income support (IS) on the grounds of incapacity and severe disablement allowance (SDA).

Figure 2.6: GB adult population by impairment severity (1996/97) and benefit receipt (2004)22

SDA+IS 0.19M Severely disabled 1.8M (Higher level DLA is targeted at this severity level) SDA+ DLA 0.23M Moderately disabled 1.8M (Lower level DLA is targeted at this severity level) Low level of disability 4.9M Not disabled 34.3M Total Claimants for each type of disability related benefit IB (Incapacity Benefit) 2.40M SDA (Severe Disablement 0.26M Allowance) IS (Income Support) 1.38M DLA (Disability Living 1.64M Allowance) All incapacity related 2.70M (IB, SDA or IS) All disability related 3.08M (IB, SDA, IS or DLA) Note: Data on numbers of people claiming three or more benefits is unavailable. This figure is a stylized picture of benefit recipiency against the total disabled population. It is not drawn to scale.

Source: Family Resources Survey – Disability follow-up, 1996/97 and DWP (2004) Client Group Analysis.

In particular, in considering There has been a significant employment, the primary focus here growth in government spending is on disabled people who are out of on disability benefits over the work. Many of these people – but last 20 years not all – are claiming incapacity-The number of incapacity-related

related benefits. And many people benefit claimants has tripled since

claiming incapacity-related benefits 197923. Currently 2.7 million peoplewould not consider themselves to of working age claim incapacity- be disabled. Unfortunately the related benefits compared withavailable data does not always 0.8 million JSA claimants, and

allow us to differentiate between 0.8 million lone parents receivingthese groups. income support.

22

The most recent available data on severity is from the Family Resources Survey Disability follow-up in 1996/97(all adults are included, including those over pension age). This tells us that 58% of disabled people experience a low-level impairment and 21% have a moderate impairment.

23

This excludes IB short-term lower cases.

Figure 2.7: Real spending on disability benefits (2004/05 prices)

35 30 25 20 15 10 5

Spending (£bn)

Other Severe Disablement Allowance Disability Living Allowance Attendance Allowance

Income Support for sick/disabled people Incapacity Benefit

Note: figure reports expenditure on working age and pensioner client group (and DLA

paid to severely disabled children) Source: Disability and Carers Directorate, DWP

0

Source: DWP (2004).

Note: ‘Other’ is Industrial Injuries Benefit and Payments to short and long-term sick and disabled people of: Community Charge/Council Tax Benefit, Housing Benefit and Discretionary Housing Payments and Income Support for under-60s excluding unemployed people. War disablement pension is excluded as consistent data is unavailable. Tax Credits are also excluded.

Government spending on disability benefits has increased in real terms over the last 10 years, and currently stands at £29.5 billion (2004/05 prices). This is due primarily to an increase in the numbers of people receiving disability living allowance and income support (with a disability premium). Spending on incapacity benefit has been falling since 1994/95, reflecting a fall in numbers receiving the benefit.

2.2 Disability is linked to life chances

Box 2.1: The reality of being a disabled person in 21st century Britain

A young man developed Multiple Sclerosis and as a result lost his job, his wife and his dignity. Someone was sent to get him out of bed at 10am, and to put him back to bed at 6pm – just so that they could fit in with the local authority carers’ rota. He tried moving into a long-term residential home, but was very unhappy24.

One father of two severely disabled children said, “I’ve had

24Source: SU consultation with disabled people and parents of disabled children

to put work on hold, which is absolutely crazy… I haven’t had time to generate the business. If we had the right level of care, I would be out there running my business, employing people, paying tax25.”

Susan’s son, David, was diagnosed with Autistic Spectrum Disorder when he was three years’ old. Susan had to wait for four months after the diagnosis before she was given any information, or contacted by any services. Susan found it difficult to get hold of information, and, when she did, there was no-one available to talk it through with her26.

Disabled people are doing less well than non-disabled people across a wide range of indicators and opportunities

Disabled people are more likely to achieve lower employment outcomes

Disabled people are less likely to be employed and more likely to be economically inactive27 than non-disabled people. Only one in two disabled people of working age are currently in employment compared to four out of five non-disabled people28.

The employment rate of disabled people is less than that of any other disadvantaged groups such as lone parents and black and minority ethnic groups29.

Employment rates are much lower for disabled men between 40 and State Pension Age than disabled women of similar ages. Employment rates are also especially low for some groups of disabled people, such as those with mental health problems and learning difficulties30.

Employment is beneficial for people. Not only does it provide financial benefits but it also boosts self- esteem, the opportunity to develop, socialise and build social networks. Employment provides people with a sense of dignity, self-worth and purpose. Disabled people out of employment may therefore lack these benefits.

Unemployment leaves permanent scars on individuals both financially and psychologically. A period of unemployment is found to reduce wages by about 6% on re-entry to the labour market in Britain, and after three years, individuals who return to work are earning 14% less than they would have received in the absence of unemployment31. There is also a strong relationship between unemployment and

25

The Times, 29th June 2004

26 Source: SU consultation with disabled people and parents of disabled children

27 ‘Economic inactivity’ describes people who are not in the labour market. People who are economically inactive are neither in work nor seeking employment.

28 Labour Force Survey 2002.

29 Labour Force Survey 2002.

30

The employment rates for those with learning difficulties percentages presented in the Labour Force Survey are far too small to be reported in a meaningful way.

31 Arulampalam, W (2001) “Is unemployment really scarring? Effects of unemployment experiences on wages”, The Economic Journal, Vol 111 585–606.

Figure 2.8: Inactivity Rates among Men (%) by age with a limiting long-standing illness or a limiting health problem or disability 1972 – 2002

Percentage (%)

80 70 60 50 40 30 20 10

0

1972-76 1979-81 1982-86 1987-91 1992-96 1997-99 2000-01 2002 Year

25-54 LLSI

25-54 LHPD

55-64 LLSI

55-64 LHPD

Source: Faggio and Nickell (2003); LLSI is a limiting long–standing illness. LHPD is a limiting

health problem or disability.

worsening mental health, and ill health in general leading to premature death32.

Patterns across employment for disabled people are mirrored by patterns across economic inactivity

Despite the strong economy and improving labour market conditions since 1998, there has been an increase in the number of economically inactive people reporting a disability.

Currently, nearly half of all disabled people of working age are economically inactive compared with 15% of non-disabled people. If we wanted to increase the employment rate of disabled people up to the current national average we would need to get almost 1.8 million more disabled people into work.

There are particular concerns around labour market inactivity amongst disabled young people. Disabled young people are considerably more likely than non-disabled people to be not in education, employment or training (NEET), particularly from age 19 when many will first transfer out of special school.

Levels of economic inactivity among disabled people vary with the severity of impairment. Half of those with middle severity rates report

32 Bartley, M (1994) “Unemployment and ill health: Understanding the relationships”, Journal of Epidemiology and Community Health, Vol 48 333–337.

that they are permanently unable to unable to work. A larger proportion work. In the age group 50 – 64, the of disabled women across all majority of disabled men – even severities report themselves to be those who are moderately disabled available but not looking for work.

– report that they are permanently

Figure 2.9: Employment growth needed to reach current overall UK employment rate

0.0 0.5 1.0 1.5 2.0 millions Disabled

LowestQualified

LoneParents

Area ofemploymentdeprivation

Over 50s

EthnicMinorities

Source: HMT (2003) Full employment in every region. There are substantial overlaps between the different groups.

Figure 2.10: Percentage of young people not in education, training or employment, by age and whether they have a disability or health problem

0 5 10 15 20 25 30 no disability or health problem disability or health problem 16 year olds 17 year olds 18 year olds 19 year olds

Source: The Youth Cohort Study (YCS) (2003) Cohort 10, Sweep 4.

Figure 2.11: Economic activity of men under 50 by severity category

Working 1-2

increasingly severe

3-4 5-6 7-8 9-10 Looking for work

0% 20% 40% 60% 80% 100% Figure 2.12: Economic activity of men aged 50 – 64 by severity category

Intending to look but temporarily ill Available, not looking

FT education/ training

Permanently unable to work

Working 1-2

increasingly severe

Looking for work3-4

Intending to look but 5-6

temporarily ill Available, not looking

7-8

FT education/training 9-10 Permanently unable to work

0% 20% 40% 60% 80% 100%

Source: Grundy, E, Ahlburg, D, Ali, M, Breeze, E and Sloggett, A (1999) “Disability in Great Britain: Results from the 1996-97 Disability Follow-up to the Family Resources Survey”, Department of Social Security, Research Report 94.

Many disabled people experience from poor social backgrounds and multiple disadvantage with lower levels of qualifications

There are proportionately more and skills. disabled people who are older,

Figure 2.13: Percentage of disabled people who experience some other form of labour market disadvantage

45

41.6 40 35

30

25.1 25 20 15 10 5 0

Lone 50+ No None of these Parent Qualification

9.6 7.2 25.5 Ethnic Minority Source: DWP using Labour Force Survey (2002), unpublished.

% of disabled people

Disabled people are more likely to live on lower incomes than non-disabled people

The income of disabled people is, on average, less than half that of non-disabled people. Even after direct taxes and benefit payments have been accounted for – disabled people still earn 30% less than non-disabled people33. At the same time, the experience of impairment and disabling barriers can mean that disabled people have increased costs compared with their non- disabled peers.

Disabled people are more likely to live in poverty. 27% of individuals in households with one or more disabled adults of working age have incomes below 60% of median income, compared with 20% of individuals in households with no disabled adults34. Among workless households with children the majority have at least one disabled parent: children are more likely to experience poverty if there are disabled adults in their family35.

Families of disabled children are more likely to live in poverty.

Twenty nine per cent of people with a disabled child in the household live in poverty, compared with 21% of households with no disabled children36. Mothers of disabled children are seven times less likely

33 Bardasi, E., S.P. Jenkins and J. Rigg (2000), “Disability, work and income: a British

perspective”, Working Paper No. 2000-36, Institute for Social and Economic Research. 34 DWP (2003) “Households Below Average Income”. 35 Stickland, H. (2003) Disabled Parents and Employment. Background paper for the

HMT/DWP Seminar held on 23 November 2003.36 DWP (2003) “Households Below Average Income”.

Figure 2.14: Quintile distribution of income for households with and without disabled children

40 35 30 1 or more disabled 25 children 20 15 No disabled 10% of children children 5 0 Bottom 2nd quintile 3rd quintile 4th quintile 5th quintile quintile Source: Households Below Average Income (2003).

than mothers with non-disabled children to be able to get work, mainly because of a lack of childcare37.

There are about 17,000 families in the UK with more than one disabled child and about 6,500 families with two or more severely disabled children. This is equivalent to well over 10,000 severely disabled children who live in a family with another severely disabled child38. Research shows that these families are more likely to be single parent, unemployed, on income support, in semi-skilled or unskilled manual jobs and less likely to own their own home39.

Disabled people are more likely to have no educational qualifications, and less likely to have advanced qualifications

Education is a key driver of opportunity. High levels of education lead to higher employment and income levels and also to better social networks and improved life satisfaction. Low levels of education are associated with the opposite – increasing the probability that disabled people will experience poverty and social exclusion.

Disabled people may face discrimination and are more likely to be victims of hate crime and harassment

One in four disabled people have experienced hate crime or

37

3% of mothers with disabled children work full time, compared with 22% of mothers with non-disabled children (Family Fund Trust (2002) and General Household Survey (2002)) and 35% of non-working lone parents have disabled children (Daycare Trust (2001) Bridging the gap).

38 Joseph Rowntree Foundation (1998) The number and characteristics of families with more than one disabled child. Based on Family Fund figures.

39

Joseph Rowntree Foundation (1998).

Figure 2.15: Proportion of people with no qualifications (%) by impairment 2001–02

0 10 20 30 40 50 percentage 16-24 25-39 40-49 Physical/ Mental illness Not Disabled 50 to Sensory 59/64 Impairment

Source: Annual Local Area Labour Force Survey 2001 – 02.

Figure 2.16: Proportion of people with advanced qualifications (A-levels or higher) by impairment 2001–02

0 10 20 30 40 50 percentage 16-24 25-39 40-49 50 to Physical/ Mental illness Not Disabled 59/64 Sensory

Source: Annual Local Area Labour Force Survey 2001–02.

harassment40, rising to 47% reported stigma and discrimination of people with mental health to be the main driver of social conditions41. Eight in ten exclusion. The majority of non-

respondents to the Social Exclusion disabled people agree that disabled Unit’s “mental health and social people do not have full equality exclusion” written consultation with non-disabled people42, and that

disabled people face prejudice43.

40 DRC (2003). 41 Mind (2003). 42 DRC (2003). 43 Eurobaromter (2001).

Disabled people often experience problems with housing and with transport

The economic disadvantages experienced by disabled people make it difficult for them to meet their housing needs through either buying or privately renting property. This increases dependency on social housing44. Between 1997 and 2003 there has been a 44% increase in the number of homeless households in priority need because a house hold member has a physical impairment, and a 77% increase in the number of households where the priority need is someone with a mental illness45.

Much of the housing stock is physically unsuitable for people with mobility or other impairments. These physical barriers do not just affect people with mobility impairments. People with a wide range of conditions (asthma, heart conditions, mental health problems, and so on) can find that inadequate and inappropriate housing makes their condition worse.

Disabled people therefore often need alterations to housing which incur costs over and above that of non-disabled people. According to a survey of housing in England in 2000, a total of 181,000 households contain people ‘with a serious medical condition or disability’ whose accommodation is not suitable for them46. Twenty-seven per cent said they could not afford to do these alterations and another 13% said they could not get a grant. 83,000 households were in the process of trying to move to somewhere more suitable47.

50

40

30

20

10

0

Figure 2.17: Percentage of disabled people living in unsuitable accommodation

0-15 16-24 25-44 45-64 65-74 75-84 85 and over % living in unsuitable accomodation

Source: ODPM (2003) Housing in England 2001/2.

44 ODPM (2003) Housing in England 2002/3, the Stationery Office.

ODPM (2004) English Survey of Housing. 46 ODPM (2004) English Survey of Housing. 47 Unpublished DWP paper.

Disabled people living in the privately rented sector were most likely to be living in housing unsuited to their needs, while owner-occupiers were most likely to report their housing was suitable.

Difficulties in accessing transport are a key component of wider social exclusion48. Disabled people travel a third less often than the general public49 and over a third of those who do travel experience difficulties, the most common being getting on or off trains or buses50.

As a result of economic disadvantage, disabled people are disproportionately reliant on an affordable, accessible public transport system. However, people with physical and/or sensory impairments experience an unequal access to public transport as a result of a failure in the past to take their access needs into account when designing and building current provision. Significant physical barriers still exist but accessible public transport is being rolled out progressively and deadlines have been set by which all public transport will be accessible. The rate at which accessible buses and trains are coming into service varies

48

around the country. For example, while 90% of buses in London are now accessible, the national average is currently only around 30%51.

People with learning disabilities or mental health problems also experience barriers to accessing transport. If a person needs someone else to accompany them on public transport this increases the cost. Negative attitudes and harassment are also reported to be key barriers to getting out and about52.

Poor outcomes are both a cause and a consequence of disability

For some disabled people, poor outcomes arise after they become disabled. For example someone may be unable to do their job following the onset of impairment, or a child may receive poor education because their special education needs are not appropriately supported. However in many cases, the onset of impairment is preceded by disadvantage. Evidence shows that low incomes, non-employment, and low education all independently increase the probability of someone becoming disabled53.

Social Exclusion Unit (2003) Making the Connections: Transport and Social Exclusion, Social Exclusion Unit.

49 Disabled Persons’ Transport Advisory Committee (2002) Attitudes of disabled people towards public transport, DPTAC.

50

DWP (2002) ‘Disabled for life?’ attitudes towards and experiences of disability in Britain.

51 Department for Transport (2003) Public Transport Statistics.

52 Strategy Unit consultation.

53 Burchardt, T (2003) “Being and Becoming: Social exclusion and the onset of disability” Centre for the Analysis of Social Exclusion, London School of Economics CASE report 21 and Jenkins and Rigg (2003).

Figure 2.18: Probability of becoming disabled in any one year, by income quintile

Probability of becoming disabled% per year

4 3 2 1 0

Bottom 2nd

Source: Burchardt (2003).

Many of these risk factors are amenable to policy intervention. Often the onset of ill health or disability deepens pre-existing disadvantage.

3rd 4th Top Income quintile

higher than its current level54. The average annual costs of bringing up a disabled child are three times greater than for a non-disabled child55, and there is significant variation within that average. However, just as important, are some of the intangible costs of this disadvantage.

2.3 The costs of disadvantage

Disadvantage for disabled people has cost implications for the individual concerned, their families, the economy and wider society

Many of these costs can be quantified. For example, if disabled people had the same qualifications as non-disabled people, their gross income would be an estimated 9%

54 Annual Local Area LFS (2001/02) and Dearden (1998) Ability, Families, Education and Earnings in Britain, IFS Working paper 98/14.

55 Gordon et al. (2000).

Table 2.2: Costs of high rates of economic inactivity amongst disabled people

Tangible Costs Intangible Costs To disabled people Forgone income net of taxes Loss of quality of life Loss of self-esteem To friends and relatives Loss of private income net of tax if caring for disabled person Loss of social life Pressure/anxiety To the economy and wider society Replacement worker training and hiring costs Output losses due to: • short/long-term absenteeism for mental and physical disability • premature mortality • reduced employment; and reduced employee efficiency. Reduced labour market flexibility Lost benefits of having a diverse workforce

Chaper 3: Vision and strategy

Summary

There are strong grounds for government action to improve the life chances of disabled people. Supporting and empowering disabled people to help themselves will improve their participation and inclusion in the community, in the labour market and in wider society. This will deliver social and economic benefits for all of society – and all of society needs to be involved.

This report sets out an ambitious vision for improving the life chances of disabled people.

By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life, and will be respected and included as equal members of society.

This ambitious goal will require a step-change in the way we deal with the disadvantage faced by disabled people. This report sets out a radical long-term strategy to achieve this step-change, building on the considerable progress that has already been made.

Four key goals have been identified in this report as the most important determinants of disabled people’s life chances:

3.1 What outcomes does government want to achieve?

A step change is needed to improve the life chances of disabled people

The previous chapter has set out the current situation facing disabled people in the UK. The scale of the challenge is significant and needs a radical, long-term strategy for change if the situation is to improve.

This action will be building on good progress that has already been made since 1997 in legislation and in wider policy. But further improvements are needed in attitudes towards disabled people and in the opportunities and choices that disabled people have in their lives. Many disabled people still have a poor quality of life, and are too often rendered dependent on benefits and care services by the attitudes and approaches of others. This lack of independence undermines disabled people’s equality and rights as citizens. Sometimes this is a result of direct discrimination, including harassment and hate crime. More insidious is indirect discrimination, including institutional cultures that assume disabled people have less to offer than non-disabled people, or which fail to include disabled people.

This report sets out an ambitious vision

This report sets out an ambitious vision that government should strive for over the next 20 years. It provides an overarching goal to inform all government action with respect to disabled people, to improve their life chances and therefore their quality of life.

Box 3.1 The Government’s vision

By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life, and will be respected and included as equal members of society.

This vision reflects the fact that there should be equality of opportunity for all people, irrespective of their needs. Different people will need different levels of support to access these opportunities, but the overall aim

Diagram 3.1: The vision, goals, policy objectives and strategy to improve thelife chances of disabled people

This diagram sets out the overall vision and how it can be achieved through the four key goals. Each goal corresponds to a chapter in this report. Under each goal is a set of policy objectives which, together, will contribute to reaching the goal. The strategy is the basis for action and provides three principles for intervention to ensure that the objectives, goals and, ultimately, vision is achieved.

VISION GOALS POLICY OBJECTIVES STRATEGY Active citizens withchoice and control over how additionalneeds are met Smooth transitioninto all aspects ofadulthood Support for familieswith young disabledchildren Improved employabilityBy 2025, disabled people in Britain should have full opportunities and choicesto improve their quality of life and will be respected and included asequal members of society • Building capacity

• Participation in local

communities andaccess tomainstream services

• Personalisingresponses to need

• Addressing barriers to transport andhousing

• Accessing ‘ordinary’ lives

• Meeting families’ needs

• Services fit for purpose

• Continuity and co-ordination • On-going supportfor the whole family

• Personalisation

• Opportunities

through on-goinginclusion

• Effective early support

• Improving disabled people’s employability

• Connecting disabled people with workand in -work support

• Engaging employers

Removing barriers Meeting individualneeds Empoweringpeople

should be for disabled people to be able to take up opportunities to improve their own quality of life in a way that is comparable with non-disabled people.

The vision also reflects the basic right of disabled people to be respected as equal citizens and to be included in British society along with their non-disabled peers.

It is also important to note that wider aims set out by government – including reducing health inequalities, child poverty and gender inequality – would be undermined by a failure to address disability equality.

The diagram on the previous page sets out the overall vision and how this can be achieved through goals, policy objectives and an overall strategy that will inform the implementation process.

3.2 What does society need to look like to deliver this vision?

There needs to be a shift in attitudes – both towards disabled people and by disabled people themselves

A significant barrier at the moment is negative attitudes towards disabled people, which can be transmitted either knowingly or unknowingly, directly or indirectly. These attitudes tend to cast disabled people as needing care or control, or as lesser human beings who do not fit into ‘normal’ society.

In order to deliver the vision described in Section 3.1, these negative attitudes – which one report has labelled ‘disabilism’56 – need to be replaced by a recognition of disabled people as full citizens and as equals to non- disabled people.57 The media has an important role to play in this process, for example by representing disabled people as citizens capable of leading interesting and fulfilling lives, and contributing to society.

There also needs to be a better understanding of disability and impairment in society, so that people understand what disability is, in particular the role of barriers in perpetuating exclusion. To address multiple sources of disadvantage, progress will also need to be made in attitudes on other diversity issues including gender, race, age and sexuality, which can be experienced by both disabled people and non- disabled people58.

Box 3.2: The scope and nature of discriminatory attitudes

Negative attitudes towards disabled people can stem from a range of sources including ignorance, lack of experience, and fear. They can occur at the individual or collective level, either directly or indirectly. Personal discrimination includes avoiding

56 Demos (2004) Disablism: How to tackle the last prejudice. 57

See the Scope Time to get equal campaign (www.timetogetequal.org.uk). 58 See Social Exclusion Unit (2004) “Breaking the Cycle: taking stock of progress and priorities for the future”.

interaction with an individual or giving an individual different treatment. Discrimination can also be collective, such as using derogatory terms about disability or portraying negative or inaccurate images of disabled people in the media. Collective discrimination can be institutional or cultural.

The following polling data indicates the current level and scope of discrimination.

• 17% of disabled respondents said they had experienced actual discrimination in the workplace because of their disability (DWP Attitudes and Awareness, 2002).

Any shift in attitudes must also involve disabled people and their families. This group can have lower self-esteem and aspirations, often as a result of direct negative experiences of discrimination and barriers. They are also members of society, and are therefore exposed to wider societal attitudes and expectations articulated through the media and other forums. A change in attitudes towards disabled people will empower individuals and their families to take up opportunities and choices to improve their life chances, with the appropriate support.

Disabled people need to be integrated into society and their needs fully taken into account

Society has come a long way with respect to gender and ethnicity issues, although there is still much progress to be made. However, recognition of disability issues arguably lags behind in terms of the extent to which it is incorporated into the structures of business, government and wider society.

Box 3.3: The diversity agenda: disability, race and gender

As highlighted in Section 3.2, the wider diversity agenda seeks to address the disadvantage and discrimination faced by a range of groups, including discrimination on the grounds of race, ethnicity, gender, sexual orientation, age and religion. There is much common ground between these groups in terms of the nature and impacts of discrimination and exclusion. And disadvantage can be compounded by the multiple aspects of identity.

However, the basis of civil rights between groups is somewhat different. The Race Relations Act 1976 and the Sex Discrimination Act 1975 seek to make sure that different groups of people are treated equally in order to achieve equal outcomes. But, the Disability Discrimination Act 1995 requires employers and others to treat disabled people differently to reduce their barriers to participating in society and to achieve equality of outcomes for disabled and non-disabled people. This is equivalent to requiring positive treatment of disabled people in some contexts.

The Commission for Equality and Human Rights will bring together the current equality Commissions in a single body that will take responsibility for new laws on age, religion or belief and sexual orientation, and for the first time provide institutional support for human rights.

For the vision in Section 3.1 to be achieved it will be necessary for disability issues to be incorporated as an integral component of the way in which all of society goes about its activity. The Disability Discrimination Bill public sector duty (Box 3.4) is intended to promote this process within the public sector.

Increasing the employment rate among disabled people will help promote social inclusion and should also reduce negative attitudes from others. For those who cannot realistically participate in the labour market, resources should be directed to enabling their inclusion in their local communities. The long-term aim is that disabled people participate in society on the same terms as non-disabled people. Mainstream policies and business should therefore be designed and implemented to take account of the needs of disabled people, alongside all other citizens. This will require widespread sign-up to the net benefits of ‘reasonable adjustments’ as set out in the DDA.

Box 3.4: The Public Sector Duty: promoting equality of opportunity for disabled people

The Disability Discrimination Bill will introduce a positive duty on the public sector to have due regard, when carrying out its functions, to the need to eliminate unlawful discrimination against, and harassment of disabled people, and to promote equality of opportunity for disabled people.

There are ‘specific duties’ under the duty to promote equality, including a requirement for a Disability Equality Scheme that sets out:

• the way the public authority will use the evidence they have gathered.

The aim of the positive duty is for the public sector to become an exemplary employer; responsive to the needs of disabled people through its service delivery; and a driver for wider change through its relationships with contractors and its regulation of the private sector.

3.3 What are the rights and responsibilities of the different players?

The delivery of societal change will require action by: the wider community including disabled individuals; government; the wider public sector; employers; and providers of goods and services. Without clarity on the rights, roles and responsibilities needed to achieve the vision, different people or groups may duplicate effort, take conflicting action, or simply do nothing at all – and it will be disabled people themselves who lose out.

In addition to the legislation described in Chapter 1, the Human Rights Act (1998) guarantees the right to life, right to liberty, to privacy, to freedom from degrading treatment, right to marry and found a family, and the right to education, subject to compatibility with primary legislation; and the Scottish Executive, Northern Ireland Assembly, Welsh Assembly Government and the Greater London Authority all have positive duties to promote equality.

responsibilities. These reflect specific obligations set out in law and also wider perceptions of what citizenship means and the values that underpin it. For example, when a citizen receives public funds through certain welfare payments, such as Job Seekers Allowance, it is widely accepted that the individual has a responsibility to take up opportunities for work or training60. These responsibilities can be implicit – reflecting social norms – or explicit through, for example, conditions attached to benefits.

Common understandings of rights and responsibilities change over time and are contested in the public realm. This is demonstrated by current debates on whether citizens have a responsibility to maintain a healthy lifestyle. Individuals in particular roles – such as benefits claimants – can assume specific new responsibilities, based on a contractual-type relationship between individual and state. The ability to meet responsibilities may be affected by barriers, such as social barriers to taking up employment. So, for responsibilities of disabled people – for example – to be met, barriers will need to be tackled and support will need to be provided to disabled people in their roles as citizens, parents, employees and so on.

In the context of disability, different groups within society need to recognise their own rights and responsibilities, so that progress can be made towards achieving the vision. The following list illustrates some rights and responsibilities of key groups.

60Strategy Unit (2004) “Personal Responsibility and Changing Behaviour: the state of knowledge and its implications for public policy”.

people, including through making ‘reasonable adjustments’ to physical premises.

3.4 What justifies government intervention to achieve these outcomes?

Disabling barriers reduce life chances, exclude disabled people and waste their talents and abilities

Disabling barriers – such as discrimination, the built environment, and policy design – have a damaging effect on life chances and lead to many disabled people living in poverty, social exclusion and with low educational outcomes. The result is that many disabled people face social and economic marginalisation from society. These poor outcomes for disabled people create a high level of inequity.

This matters for disabled people themselves, as well as for carers and families. It also matters for society as a whole, because we lose the talent and contribution of disabled people. The exclusion of disabled people from mainstream society also means that they participate less in public life and institutions. This means fewer voices are being expressed and taken into account in the democratic process and in the creation of the values and norms that shape society.

Disabling barriers also impact on economic growth and productivity

With less than half of disabled people of working age in employment, there is significant wastage of disabled people’s potential contribution to economic growth and productivity. The status quo seeks to compensate disabled people for impairment and disabling barriers, rather than supporting them to improve their quality of life. As detailed in Chapter 2, this not only costs the public purse in benefits spend, it also reduces the economic and social contribution of many disabled people who could be better supported to participate in the workplace, in their local communities and in society generally. Effective government action to improve the life chances

of disabled people should in many cases deliver net economic benefits, and result in more efficient use of public resources.

There are a number of reasons why the vision would not be achieved without government intervention

Disabling barriers, which prevent disabled people from being fully included in society, need to be actively addressed by government. Without action, existing behaviours, attitudes and structures will continue to marginalise disabled people. This should include government leading by example, demonstrating positive attitudes towards disabled people, and being a model employer.

At the same time, disabled people have additional needs which may require support. The type of support required can vary. For example, personal assistance or support to perform daily activities, advocacy to make informed decisions, adaptations to housing in order to live independently, interpreter or equipment to enable communication. The costs of meeting additional needs, particularly for those on lower incomes, would be prohibitive if borne by the individual alone. Government action reflects society’s responsibility to make sure that all people are enabled to live with dignity and to participate in and contribute to their local communities.

Finally, government intervention can address market failures – such as discrimination against disabled people by employers and service providers because of a lack of information about their skills and abilities. These market failures would continue without state action and undermine efficiency and social goals.

3.5 What does government need to do to deliver on the vision?

To achieve the vision, government needs clear principles to inform all policymaking. These principles should feed into a strategy that is implemented through a coherent delivery process. All three components – policy principles, strategy and delivery – should be consistent and self-reinforcing.

Policy design needs to be inclusive, effective and informed

To ensure that policy design is consistent with the overall vision and contributes directly to the achievement of the vision, policy should be based on the following three principles.

Inclusive

• Disabled people to be enabled to contribute to the life of their local communities and to society generally, supported by both specialist and mainstream policy. Disabled people’s needs should be

Figure 3.2 Connections between the policy principles, strategy and delivery of the vision

POLICY PRINCIPLES STRATEGY DELIVERY Inclusive Effective Informed Removing barriers Meeting individual needs Empowering people Designing inclusive systems Ensuring high performance Involving disabled people actively incorporated early on within all mainstream policy design and delivery, alongside other citizens.

Effective

• Disabled people should receive individualised responses to their additional requirements, to a high standard, when they need them,