How did the World report on disability come about? Like everything that WHO does, it began with a resolution from the World Health Assembly, the governing body of the Organization. It was developed jointly with the World Bank, as disability is broader than health, rehabilitation and community living. The wider context was the CRPD, the major international treaty which r einforces our understanding of disability as a human rights and as a development issue. This treaty has now been signed by XX countries and ratified by ZZ countries. [As of July 15, 149 signatories and 103 ratifications but check latest figures at http://www.un.org/disabilities/]] The CRPD understands disability to arise from the relationship between a person with an impairment and the wider environment. This interactional approach is consistent with the WHO ICF classification, which emphasises the role of the environment in either enabling or disabling people with health conditions. The CRPD has been described as the &quot;moral compass of the report&quot;, while the ICF provides the conceptual framework.
The World report fills a major gap, by providing evidence on the global disability situation. It answers questions such as &quot;how many disabled people are there?&quot; &quot;What is the extent of need and unmet need?&quot; &quot;What are the barriers to participation?&quot; and &quot;What works to overcome those barriers&quot;. The World report also helps by showing what works, and highlighting what can be done, in line with the CRPD, to improve the lives of persons with disabilities, for example better policy, more accessible services, better knowledge, and training for professionals from health and other fields so they understand the human rights approach to disability. The World report therefore provides evidence which underpins many Articles of the CRPD, and will assist member states in the implementation of the CRPD.
We know that disability is complex and multi-dimensional. If we are to address disability disadvantage, we need to work together. That is why it was so important to involve a wide range of people in developing the report. Over 380 people from 70 different countries contributed to the report, including academics, policy-makers, professionals, disability rights advocates and people from the NGO community. The report has been through an extensive consultation process in all WHO regions and rigorous peer review. A particular feature is the involvement of people with disabilities themselves. People with disabilities have been on the advisory committee, the editorial committee as contributors and peer reviewers. Personal testimonies from people with disability open each chapter, some of which can be found at greater length on the website for the report.
So, turning to the evidence in the World report. First, it tells us something about people with disabilities as a group. Since the 1970s, WHO has been saying that 10% of the population are disabled. Now, through analysis of the World Health Survey (WHS), the Global Burden of Disease (GBD) Survey, and national surveys, we can see that a more accurate estimate is 15% or one billion people. Secondly, the World report tells us about trends: there are increasing numbers of PWD, because we are living longer (and older people have a higher risk of disability) and because chronic diseases such as arthritis, diabetes and heart diseases are on the rise. Finally, disability is very diverse and affects people unequally. Poor people, women and older people are more likely to experience disability. And w hile disability correlates with disadvantage not all people with disabilities are equally disadvantaged. School enrolments differ among impairments. Those most excluded form the labour market are people with intellectual impairments and people with mental health conditions.
As we mentioned, both the CRPD and the ICF highlight the role that the environment can play in facilitating or restricting participation. The World report provides strong evidence of some of the most common barriers faced by PWD. The environment can be modified . As such much of the disadvantage experienced by people with disabilities is preventable. We can do something about these problems! To the right of the slide, you can see three of the women in WHO You Tube videos. From Lebanon, Mia told us about the discrimination she had faced in education. From United Republic of Tanzania, Faustina explained how assistive devices such as wheelchairs are vital to empowerment. In United Kingdom, Rachael told us about the obstacles she had had to overcome in order to train and work as a nurse.
What are the outcomes of these barriers? Poorer health than the general population. Lower educational achievements : Children with disabilities are less likely to start school than their non disabled peers and more likely to drop out. Even in countries where most non disabled children go to school – disabled with disabilities do not go to school. For example: - in Bolivia about 98% of non disabled children go to school, but less than 40% of disabled children go to school; - In Indonesia over 80% of non disabled children go to school, but less than 25% of children with disabilities go to school. Less economic participation : disabled people are less likely to be employed, and generally earn less when employed. A recent OECD study found that t he inactivity rate for people with disability (49%) was 2.5 times higher than among persons without disability (20%). As a result, people with disabilities have higher rates of poverty - including food insecurity, poor housing, lack of access to safe water and inadequate access to health care as well as fewer assets. People with disabilities often face extra costs for example for healthcare and assistance. PWD also experience increased dependency and restricted participation : for example as a result of institutionalisation, lack of access to transport and environments, and this results in isolation. The important thing is to realise that it is not so much the health condition which causes problems for people with disabilities – it is the way that society treats people with a health condition which matters most.
This slide shows the cover of the World Report which is one of the pictures taken from a poster series breaking barriers. There are nine chapters that include disability concepts, data, general healthcare, rehabilitation, assistance and support, environments (buildings, transport and information and communication) as well as education and employment. The World report does not cover the whole of the CRPD, but it does cover key areas necessary for inclusion in society. Each chapter has a similar structure, looking at need and unmet need, then barriers, and then ways of overcoming barriers. There are specific recommendations at the end of each chapter, as well as the general recommendations at the end of the report.
Rehabilitation assists individuals with disability to achieve and maintain optimal functioning in interaction with their environment by reducing the impact of a broad range of health conditions. Yet rehabilitation is a neglected area of healthcare, and of disability policy generally. ( supporting information for Bullet 2 ) For example, a 2005 global survey of the implementation of the nonbinding, UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities in 114 countries found that: - 42% countries had not adopted rehabilitation policies. - 50% did not pass legislation on rehabilitation. - 40% did not establish rehabilitation programmes. Evidence from studies conducted in Malawi, Mozambique, Namibia, Zambia, and Zimbabwe reveal large gaps in the provision of medical rehabilitation: 45.2 - 76.2% of people who needed the services did not receive them; and 63.4 - 82.7% of people who needed assistive devices did not receive them. Inequalities between men and women, between rural and urban dwellers and based on socioeconomic status were also found. Just in the area of hearing aid provision, hearing aid producers and distributors estimate that hearing aid production currently meets less than 10% of global need, and less than 3% of the hearing aid needs in developing countries are met annually. A recent global survey (2006‑2008) of vision services in 195 countries found that waiting times in urban areas averaged less than one month, while waiting times in rural areas ranged from six months to a year. ( ….Bullet 4 ) There are insufficient rehabilitation personnel with appropriate capacity. For example the 30 million people who need prostheses, orthotics and related services in Africa, Asia, and Latin America require an estimated 180 000 rehabilitation professionals. However, in 2005 there were only 24 prosthetic and orthotic schools in developing countries, graduating just 400 trainees annually. ( ….Bullet 5 ) Services also tend to be centralized (that is, concentrated in urban areas) leaving the rural poor with little or no access to rehabilitation. Referral systems are generally inadequate with services operating in a fragmented and poorly coordinated manner. ( ….Bullet 6 ) At the policy and legislation level, there is a lack of responsibility taken by Governments, inadequate strategic planning, and implementation. There is limited government spending and selective coverage.
Policy responses should emphasize early intervention , the benefits of rehabilitation to promote functioning in people with a broad range of health conditions, and the provision of services as close as possible to where people live. Creating or implementing national plans on rehabilitation , and establishing infrastructure and capacity to implement the plan are critical to improving access to rehabilitation. Funding mechanisms to address barriers related to financing of rehabilitation require careful evaluation for their applicability and cost-effectiveness. Mechanisms may include: reallocation or redistribution of resources; support through international cooperation; public-private partnerships for service provision; making essential rehabilitation services available free of charge for poor people with disabilities who cannot afford to pay; and promoting equitable access to rehabilitation through health insurance. Increasing human resources for rehabilitation and productivity will require training capacity to be built in accord with national rehabilitation plans; the identification of incentives and mechanisms for retaining personnel especially in rural and remote areas; and the training of non-specialist health professionals (doctors, nurses, primary care workers, CBR workers) on disability and rehabilitation relevant to their roles and responsibilities. Established rehabilitation services should focus on improving efficiency and effectiveness, by e xpanding coverage and improving quality and affordability . Client centred and multidisciplinary approaches should be encouraged. In less-resourced settings the focus should be on accelerating the supply of services through community-based rehabilitation (CBR) , complemented by referrals to secondary services. In all cases service users must be included in decision making – rehab is always voluntary. Increase the use and affordability of technology and assistive devices . Access to assistive technologies can be improved by pursuing economies of scale, manufacturing and assembling products locally, and reducing import taxes. Expanding research programmes, including improving information and access to good-practice guidelines is essential.
The report concludes with 9 cross cutting recommendations. Implementing them requires involving different sectors – health, education, social protection, labour, transport, housing – and different actors – governments, civil society organizations (including disabled persons organizations), professionals, the private sector, disabled individuals and their families, the general public, the private sector, and media . It is essential that countries tailor their actions to their specific contexts. Where countries are limited by resource constraints, some of the priority actions, particularly those requiring technical assistance and capacity building, can be included within the framework of international cooperation. First recommendation is on mainstreaming : this is the process by which governments and other stakeholders address the barriers that exclude persons with disabilities from participating equally with others in any activity and service intended for the general public, such as education, health, employment, and social services. To achieve it, changes to laws, policies, institutions, and environments may be indicated. Mainstreaming not only fulfils the human rights of persons with disabilities, it also can be more cost-effective Second, i n addition to mainstream services, some people with disabilities may require access to specific measures, such as rehabilitation, support services, or training. Third, a national disability strategy sets out a consolidated and comprehensive long-term vision for improving the well-being of persons with disabilities and should cover both mainstream policy and programme areas and specific services for persons with disabilities. The development, implementation, and monitoring of a national strategy should bring together the full range of sectors and stakeholders. Fourth, p eople with disabilities often have unique insights about their disability and their situation. In formulating and implementing policies, laws, and services, people with disabilities should be consulted and actively involved . Disabled people’s organizations may need capacity building and support to empower people with disabilities and advocate for their needs. Fifth, relates to training of healthcare workers, architects and other professionals , but also to ensuring availability of rehabilitation staff, sign language interpreters and support staff. Sixth, a dequate and sustainable funding of publicly provided services is needed to ensure that they reach all targeted beneficiaries and that good quality services are provided. Seven, m utual respect and understanding contribute to an inclusive society. Therefore it is vital to improve public understanding of disability, confront negative perceptions, and represent disability fairly . Eight and nine emphasise the gaps in our knowledge about disability, the need for disaggregated data , the need for evidence on outcomes of interventions so we know what works. More researchers, including more researchers with disabilities , should be trained to conduct these studies.
This slide shows how the World report will contribute to generating country level action. National launches or policy dialogues in countries will be the basis for developing or revising national plans of action with concrete actions and resource allocation to improve access to services, build capacity and raise awareness. These will develop country and regional programmes which can then be scaled up. WHO anticipates that the report through international policy dialogue will also help generate increased political will and raise awareness. It will also set the agenda for technical support activities. The large number of partners – WHO, DPOs, NGOs, professionals, development actors, academics - involved in the development of this report are also committed to supporting its implementation.
World report on disability
DISABLING BARRIERS – BREAK TO INCLUDE WORLD REPORT ON DISABILITY
Background <ul><li>World Health Assembly </li></ul><ul><ul><ul><li>Resolution 58.23 on "Disability, including prevention, management and rehabilitation", requests WHO to produce a World Report. </li></ul></ul></ul><ul><ul><ul><li>Developed and published in partnership with the World Bank. </li></ul></ul></ul><ul><li>Convention on the Rights of Persons with Disabilities (CRDP) </li></ul><ul><ul><ul><li>UN treaty came into force in May 2008. </li></ul></ul></ul><ul><ul><ul><li>Reinforces our understanding of disability as a human rights and as a development issue. </li></ul></ul></ul><ul><li>International Classification of Functioning, Disability and Health (ICF) </li></ul><ul><ul><ul><li>Emphasizes the role of the environment in enabling or disabling people with health conditions. </li></ul></ul></ul><ul><ul><ul><li>Adopted as the conceptual framework for the report. </li></ul></ul></ul>
Aims of the World report on disability <ul><li>To provide governments and civil society with a comprehensive analysis of the importance of disability and the responses provided, based on best available evidence. </li></ul><ul><li>To recommend national and international action to improve the lives of persons with disabilities. </li></ul><ul><li>To support implementation of the Convention on the Rights of Persons with Disabilities . </li></ul>
How was the World report developed? <ul><li>Involvement of a large number of stakeholders : </li></ul><ul><ul><ul><li>advisory and editorial committee; </li></ul></ul></ul><ul><ul><ul><li>over 380 contributors; </li></ul></ul></ul><ul><ul><ul><li>over 70 low, middle and high income countries represented. </li></ul></ul></ul><ul><li>Extensive review process : </li></ul><ul><ul><ul><li>regional consultations, peer review. </li></ul></ul></ul><ul><li>People with disabilities central to the process </li></ul>
What does the World report tell us? <ul><li>Higher estimates of prevalence </li></ul><ul><ul><ul><li>1 billion people (15%), of whom 110-190 million adults have very significant difficulties in functioning. </li></ul></ul></ul><ul><li>Growing numbers </li></ul><ul><ul><ul><li>Due partly to ageing populations, increase in chronic diseases, injuries from road traffic crashes, disasters etc. </li></ul></ul></ul><ul><li>Inequalities </li></ul><ul><ul><ul><li>Disproportionately affects vulnerable populations: women, poorer people, older people. </li></ul></ul></ul><ul><ul><ul><li>Not all people with disabilities are equally disadvantaged. </li></ul></ul></ul>
Disabling barriers: widespread evidence <ul><li>Inadequate policies and standards </li></ul><ul><li>Negative attitudes </li></ul><ul><li>Lack of provision of services </li></ul><ul><li>Problems with service delivery </li></ul><ul><li>Inadequate funding </li></ul><ul><li>Lack of accessibility </li></ul><ul><li>Lack of consultation and involvement </li></ul><ul><li>Lack of data and evidence </li></ul>
Outcomes of disabling barriers <ul><li>Poorer health than the general population </li></ul><ul><li>Lower educational achievements </li></ul><ul><li>Less economic participation </li></ul><ul><li>Higher rates of poverty </li></ul><ul><li>Increased dependency and reduced participation </li></ul><ul><li>It is the way that society treats people with disabilities </li></ul><ul><li>which matters most </li></ul>
Content overview <ul><li>Understanding disability </li></ul><ul><li>Disability – a global picture </li></ul><ul><li>General health care </li></ul><ul><li>Rehabilitation </li></ul><ul><li>Assistance and support </li></ul><ul><li>Enabling environments </li></ul><ul><li>Education </li></ul><ul><li>Work and employment </li></ul><ul><li>The way forward </li></ul>
Rehabilitation: issues and challenges <ul><ul><li>. </li></ul></ul><ul><ul><li>Rehabilitation is a good investment because it builds human capacity and promotes participation. </li></ul></ul><ul><ul><li>Global data is limited on met and unmet needs, but country surveys reveal large gaps in the provision of rehabilitation and assistive devices. </li></ul></ul><ul><ul><li>Limited access results in deterioration in health, activity limitations and participation restrictions, increased dependency, and reduced quality of life. </li></ul></ul><ul><ul><li>Few rehabilitation personnel: limited capacity, particularly in Africa. </li></ul></ul><ul><ul><li>Systemic problems: rehabilitation overly centralized, lack of effective referral. </li></ul></ul><ul><ul><li>Need for more investment in rehabilitation services. </li></ul></ul>
Rehabilitation: solutions <ul><ul><li>Policy, legislation and regulatory mechanisms . </li></ul></ul><ul><ul><li>Financing: address cost and coverage through international cooperation, partnerships, targeted funding. </li></ul></ul><ul><ul><li>Human resources: increase capacity and supply of personnel through education and training, mechanisms for recruiting and retaining. Mid-level workers as first step. </li></ul></ul><ul><ul><li>Service delivery: integration into health system, coordination, community-based, early intervention. </li></ul></ul><ul><ul><li>Assistive technology : appropriate for user needs, good follow-up, local manufacturing, reducing taxes. </li></ul></ul><ul><ul><li>Research and evidence-based practice . </li></ul></ul>
Cross cutting recommendations <ul><li>Enable access to all mainstream policies, systems and services. </li></ul><ul><li>Invest in specific programmes and services for persons with disabilities. </li></ul><ul><li>Adopt a national disability strategy and plan of action. </li></ul><ul><li>Involve people with disabilities. </li></ul><ul><li>Improve human resource capacity. </li></ul><ul><li>Provide adequate funding and improve affordability. </li></ul><ul><li>Increase public awareness and understanding of disability. </li></ul><ul><li>Improve disability data collection. </li></ul><ul><li>Strengthen and support research on disability. </li></ul>
Ways forward ? National plan of action World report National and regional/ programs Research National policy dialogues Awareness Capacity Building Services Law and polic y International policy dialogue Technical support
Summary <ul><li>1 billion people </li></ul><ul><li>Increasing numbers </li></ul><ul><li>Barriers can be overcome </li></ul><ul><li>World report shows us how </li></ul><ul><li>It's time to scale up </li></ul>http://www.youtube.com/who Choose "What's disability to me? Faustina's story"
Professor Gerben DeJong PhD FACRM Senior Fellow & Director, Center for Post-acute Innovation & Research, National Rehabilitation Hospital & MedStar Health Research Institute Professor, Department of Rehabilitation Medicine Georgetown University School of Medicine Washington DC, USA Rehabilitation's Vital Role
Outline of presentation <ul><li>Diversity of countries </li></ul><ul><li>Rehabilitation’s vital role in human health and well-being </li></ul><ul><li>Diversity of needs and practice patterns worldwide </li></ul><ul><li>Emerging needs </li></ul><ul><li>Building capacity </li></ul><ul><li>Contact details: [email_address] </li></ul>