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WHO Library Cataloguing-in-Publication Data World report on disability 2011. 1.Disabled persons – statistics and numerical data. 2.Disabled persons – rehabilitation. 3.Delivery of health care. 4.Disabled children. 5.Education, Special. 6.Employment, Supported. 7.Health policy. I.World Health Organization. ISBN 978 92 4 156418 2 (N LM classi˜cation: HV 1553) ISBN 978 92 4 068521 5 (PDF) ISBN 978 92 4 068636 6 (ePUB) ISBN 978 92 4 068637 3 (Daisy) © World Health Organization 2011 All rights reserved. Publications of the World Health Organization are available on the WHO web site (www.who.int) or can be purchased from WHO Press, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel.: +41 22 791 3264; fax: +41 22 791 4857; e-mail: bookorders@who.int). Requests for permission to reproduce or translate WHO publications Œ whether for sale or for noncommercial distribution Œ should be addressed to WHO Press through the WHO web site (http:// www.who.int/about/licensing/copyright_form/en/index.html). The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of speci˜c companies or of certain manufacturers™ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising from its use. Printed in Malta
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iii iiiContents Foreword ix Preface xi Acknowledgements xiii List of contributors xv Introduction xxi Understanding disability 1What is disability? 3Environment 4The diversity of disability 7Prevention 8Disability and human rights 9Disability and development 10 Disability Œ a global picture 19 Measuring disability 21 Prevalence of disability Œ di˜culties in functioning 24 Country-reported disability prevalence 25 Global estimates of disability prevalence 25 Health conditions 32 Trends in health conditions associated with disability 32 Demographics 34 Older persons 34 Children 36 The environment 37 Health conditions are a˜ected by environmental factors 37 Disability and poverty 39 Developed countries 39 Developing countries 39 Needs for services and assistance 40
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ivCosts of disability 42 Direct costs of disability 43 Indirect costs 44 Conclusion and recommendations 44 Adopt the ICF 45 Improve national disability statistics 45 Improve the comparability of data 46 Develop appropriate tools and ˚ll the research gaps 46 General health care 55 Understanding the health of people with disabilities 57 Primary health conditions 57 Risk of developing secondary conditions 58 Risk of developing co-morbid conditions 59 Greater vulnerability to age-related conditions 59 Increased rates of health risk behaviours 59 Greater risk of being exposed to violence 59 Higher risk of unintentional injury 60 Higher risk of premature death 60 Needs and unmet needs 60 Addressing barriers to health care 62 Reforming policy and legislation 65 Addressing barriers to ˚nancing and a˜ordability 66 Addressing barriers to service delivery 70 Addressing human resource barriers 77 Filling gaps in data and research 80 Conclusion and recommendations 81 Policy and legislation 82 Financing and a˜ordability 82 Service delivery 82 Human resources 83 Data and research 83 Rehabilitation 93 Understanding rehabilitation 95 Rehabilitation measures and outcomes 95 Rehabilitation medicine 97 Therapy 100 Assistive technologies 101 Rehabilitation settings 101 Needs and unmet needs 102 Addressing barriers to rehabilitation 103 Reforming policies, laws, and delivery systems 104 National rehabilitation plans and improved collaboration 105 Developing funding mechanisms for rehabilitation 106
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vIncreasing human resources for rehabilitation 108 Expanding education and training 110 Training existing health-care personnel in rehabilitation 111 Building training capacity 112 Curricula content 112 Recruiting and retaining rehabilitation personnel 112 Expanding and decentralizing service delivery 114 Coordinated multidisciplinary rehabilitation 114 Community-delivered services 114 Increasing the use and a˚ordability of technology 117 Assistive devices 117 Telerehabilitation 118 Expanding research and evidence-based practice 119 Information and good practice guidelines 120 Research, data, and information 121 Conclusion and recommendations 121 Policies and regulatory mechanisms 122 Financing 122 Human resources 122 Service delivery 122 Technology 123 Research and evidence-based practic 123 Assistance and support 135 Understanding assistance and support 138 When are assistance and support required? 139 Needs and unmet needs 139 Social and demographic factors a˜ecting demand and supply 140 Consequences for caregivers of unmet need for formal support services 141 Provision of assistance and support 142 Barriers to assistance and support 144 Lack of funding 144 Lack of adequate human resources 144 Inappropriate policies and institutional frameworks 145 Inadequate and unresponsive services 145 Poor service coordination 145 Awareness, attitudes, and abuse 147 Addressing the barriers to assistance and support 147 Achieving successful deinstitutionalization 147 Creating a framework for commissioning e˜ective support services 149 Funding services 149 Assessing individual needs 150 Regulating providers 151 Supporting public-private-voluntary services 151
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viCoordinating ˛exible service provision 152 Building capacity of caregivers and service users 155 Developing community-based rehabilitation and community home-based care 156 Including assistance and support in disability policies and action plans 156 Conclusion and recommendations 157 Support people to live and participate in the community 157 Foster development of the support services infrastructure 157 Ensure maximum consumer choice and control 158 Support families as assistance and support providers 158 Step up training and capacity building 158 Improve the quality of services 159 Enabling environments 167 Understanding access to physical and information environments 170 Addressing the barriers in buildings and roads 172 Developing e˜ective policies 173 Improving standards 173 Enforcing laws and regulations 175 The lead agency 175 Monitoring 175 Education and campaigning 176 Adopting universal design 177 Addressing the barriers in public transportation 178 Improving policies 179 Providing special transport services and accessible taxis 179 Universal design and removing physical barriers 180 Assuring continuity in the travel chain 182 Improving education and training 183 Barriers to information and communication 183 Inaccessibility 184 Lack of regulation 185 Cost 185 Pace of technological change 186 Addressing the barriers to information and technology 186 Legislation and legal action 186 Standards 188 Policy and programmes 189 Procurement 190 Universal design 191 Action by industry 191 Role of nongovernmental organizations 192
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viiiConclusion and recommendations 250 Governments 251 Employers 251 Other organizations: NGOs including disabled people™s organizations, micro˚nance institutions, and trade unions 252 The way forward: recommendations 259 Disability: a global concern 261 What do we know about people with disabilities? 261 What are the disabling barriers? 262 How are the lives of people with disabilities a˜ected? 263 Recommendations 263 Recommendation 1: Enable access to all mainstream policies, systems and services 264 Recommendation 2: Invest in speci˚c programmes and services for people with disabilities 265 Recommendation 3: Adopt a national disability strategy and plan of action 265 Recommendation 4: Involve people with disabilities 265 Recommendation 5: I mprove human resource capacity 266 Recommendation 6: P rovide adequate funding and improve a˜ordability 266 Recommendation 7: I ncrease public awareness and understanding of disability 267 Recommendation 8: Improve disability data collection 267 Recommendation 9: S trengthen and support research on disability 267 Conclusion 268 Translating recommendations into action 268 Technical appendix A 271 Technical appendix B 281 Technical appendix C 287 Technical appendix D 295 Technical appendix E 299 Glossary 301 Index 311
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ixForeword Disa bility need not be an obstacle to success. I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a prominent career in astrophysics and a happy family life. Reading the World report on disability , I ˜nd much of relevance to my own experience. I have bene˜tted from access to ˜rst class medical care. I rely on a team of personal assistants who make it possible for me to live and work in comfort and dignity. My house and my workplace have been made accessible for me. Computer experts have supported me with an assisted communication system and a speech synthesizer which allow me to compose lectures and papers, and to commu -nicate with di˚erent audiences. But I realize that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is very clear that the majority of people with dis -abilities in the world have an extremely di˛cult time with everyday survival, let alone productive employment and personal ful˜lment. I welcome this ˜rst World report on disability . ˝is report makes a major contribution to our understanding of disability and its impact on individuals and society. It highlights the di˚erent barriers that people with disabilities face Œ attitudinal, physical, and ˜nancial. Addressing these barriers is within our reach. In fact we have a moral duty to remove the barriers to participation, and to invest su˛cient fund -ing and expertise to unlock the vast potential of people with disabilities. Governments throughout the world can no longer overlook the hundreds of millions of people with disabilities who are denied access to health, rehabilitation, support, education and employment, and never get the chance to shine. ˝e report makes recommendations for action at the local, national and international levels. It will thus be an invaluable tool for policy-makers, researchers, practitioners, advocates and vol -unteers involved in disability. It is my hope that, beginning with the Convention on the Rights of Persons with Disabilities , and now with the publication of the World report on disability , this century will mark a turning point for inclusion of people with disabilities in the lives of their societies. Professor Stephen W Hawking
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xiPreface More than one billion people in the world live with some form of disability, of whom nearly 200 million experience considerable di˜culties in functioning. In the years ahead, disability will be an even greater concern because its prevalence is on the rise. ˚is is due to ageing populations and the higher risk of disability in older people as well as the global increase in chronic health conditions such as diabetes, cardiovascular disease, cancer and mental health disorders. Across the world, people with disabilities have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities. This is partly because people with disabilities experience barriers in accessing services that many of us have long taken for granted, including health, education, employment, and transport as well as information. These difficulties are exacerbated in less advantaged communities. To achieve the long-lasting, vastly better development prospects that lie at the heart of the 2015 Millennium Development Goals and beyond, we must empower people living with disabilities and remove the barriers which prevent them participating in their communities; getting a quality edu -cation, ˛nding decent work, and having their voices heard. As a result, the World Health Organization and the World Bank Group have jointly produced this World Report on Disability to provide the evidence for innovative policies and programmes that can improve the lives of people with disabilities, and facilitate implementation of the United Nations Convention on the Rights of Persons with Disabilities, which came into force in May 2008. ˚is landmark international treaty reinforced our understanding of disability as a human rights and development priority. ˚e World Report on Disability suggests steps for all stakeholders Œ including governments, civil society organizations and disabled people™s organizations Œ to create enabling environments, develop rehabilitation and support services, ensure adequate social protection, create inclusive policies and programmes, and enforce new and existing standards and legislation, to the bene˛t of people with disabilities and the wider community. People with disabilities should be central to these endeavors. Our driving vision is of an inclusive world in which we are all able to live a life of health, com -fort, and dignity. We invite you to use the evidence in this report to help this vision become a reality. Dr Margaret Chan Director-General World Health Organization Mr Robert B Zoellick President World Bank Group
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