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Foreword
 Inclusion International has fought for more than 40 years to ensure that people with an intellectual disability and their families can be recognized as full citizens, enjoy the rights enjoyed by others, and feel valued as contributors to their communities. In 1971, at our urging, the United Nations adopted the Declaration on the Rights of Mentally Retarded Persons (we would never use that term now!). Our members have gained new human rights provisions in national laws, and we have secured additional international provisions–in the United Standard Rules, in the United Nations Convention on the Rights of the Child. There is promise in the new United Nations Convention on the Rights of Pers-ons with Disabilities, which is on its way to adoption by the United Nations General Asse-mbly as this report is being finalized. But the reality facing our members is that despite the increase in the number of human rights provisions, the lives of people with an intellectual disability around the world are characterized by exclusion.At the same time, over the past decade there has been global effort to reduce poverty, especially of those most affected by it. Beginning with the World Social Summit in 1995, and most recently popularized by stars like Bono and Madonna, there have been various initiatives to mobilize change. The framework for these efforts has been the development of the Millennium Development Goals, a series of 8 time-limited and specific targets. | Yet again, despite these global efforts, people with an intellectual disability and their families continue to be economically disadvantaged. Even in areas where poverty as a whole has been reduced, the situation of people with an intellectual disability and their families remains unchanged, and often, they remain the poorest of the poor. Why have people’s lives not improved with the adoption of new human rights provisions? Why are people who have an intellectual disability and their families not benefiting from poverty reduction strategies? We went to our members to try to answer these questions. This report contains their answer. It is the story of poverty and exclusion told by individuals and amilies in more than 80 countries. It is a story of poverty and exclusion. But it is also a story of hope. Because in the stories told by our members there were also clues about how to overcome poverty and exclusion. We cannot wallow in our dissatisfaction with what exists today. We need to use our energy to translate what we have learned to create more inclusive communities. We need to find new partners to work with us. We owe it to all those who have shared their stories to nite our voices and to build a better world for all. Diane Richler President Inclusion International |
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Acknowledgements Thanks also to the Office For Disability Issues, Government of Canada for their contribution to the development of this report. This report would not be complete without the incredible pictures that help convey our message. For that we thank photographer Carlos Reyes-Manzo. We want to recognize David Towell for his unwavering support and his critical eye and Michael Bach and his staff at the Canadian Association for Community Living for their support and contributions throughout the process. This project would not have been possible without the dedication of Connie Laurin-Bowie. We thank her for her vision and direction in developing and executing this project and for helping us to continue to move forward with this work. Finally, to the hundreds of individuals and families who are not listed by name but who shared their personal stories, experiences and hopes so generously with us in every part of the world, thank you. We hope this report does justice to what you know to be true and what you imagine is possible. |
This report brings together the voices of our movement. It reflects the work and contri-bution of people all over the world who struggle daily to improve the lives of people with intellectual disabilities and their families. From the beginning, this initiative was not designed as an academic research study to be carried out by cons-ultants. Rather, we designed a participatory process that would engage our members around the world and allow them to describe in their own words their experiences as individuals and families.|
Introduction We know this, but as we’ve learned others don’t. So we began this study to tell the stories and share the experiences of people with intellectual disabilities around the world. We have a profound belief that knowledge is power. If we share the knowledge we have gained as a parent and family movement with others, they will be in a better position to use their own power to make a difference. Stories can move others. Voices calling for change can compel action. Knowledge shared generously helps others to learn. This was the hope that gave birth to this study and this Global Report. We are grateful to Inclusion Europe who contributed to this study a very helpful literature review on the concepts of poverty and exclusion.1 Their report emphasizes that poverty is indeed a multi-dimensional concept and includes unacceptable social and economic deprivation, and lack of empowerment and security. As Amartya Sen suggests If poverty is defined by deprivation, why are people with intellectual disabilities and their families so deprived? Universally, those who participated in this study gave a similar answer: because we are excluded – from social, economic, and political systems that give opportunity, resources, recognition and rights. This was another guidepost in our journey – poverty, disability and exclusion seem fundamentally linked. We need to understand how this comes to be, and how we might unravel their bonds so that people with intellectual disabilities come to belong, are included and take their rightful place in their families, communities, and society. |
poverty should also be understood in relation to human development and the ‘capabilities’ necessary for maximizing potential in the life of each and every individual, family and community.|
Defining Ourselves – People with Intellectual Disabilities and their Families
 Our member associations are often asked by others to define who we are and who we advocate for. Defining oneself can be tricky business. Too often people with intellectual disabilities are defined and labeled by others in ways that devalue and objectify. Who is the ‘we’ this study is about? Our answer is a third guidepost for our study.We are people who have been identified as having an intellectual disability, and their families. We are mothers and fathers, sisters and brothers, aunts and uncles, cousins, nieces, nephews, grandchildren, grandmothers and grandfathers. We are children of parents who have an intellectual disability. We are friends and advocates who make a commitment to help advance full inclusion, citizenship and human rights. People with intellectual disabilities are neighbours and community members, schoolmates, co-workers and fellow citizens. As self-advocates and families, we call on others to recognize that we all learn in different ways and make our own unique contributions to families and communities. We no longer want people to refer to the ‘mentally retarded,’ a term that has been used to devalue, segregate and discriminate against people. We challenge all those who would define intellectual disability as simply slower or deficient ways of remembering, thinking and communicating. Our message is clear. Respect and understand differences. Value all people for their contributions. Treat all people with equality regardless of their disability, religious, gender, ethno-racialcultural, sexual orientation, and other differences. This does not mean that people do not want to develop. On the contrary, we all want support to develop to our maximum potential and to pursue our own unique life path. We all want to thrive with other members in our families, communities, schools, and places of work. People with intellectual disabilities just want the same. So we use the term intellectual disability in this report to refer to that group of infants, children, youth, adults and seniors who are first and foremost members of families and communities; people who sometimes need particular support and care because of their unique learning, communication and other needs and contributions. |
| While there is no absolute count of people with intellectual disabilities around the world, we use in this report the average of the estimates that researchers and demographers in the field tend to use – 2.0% of the global population or about 130 million people. Millennium Development Goals – Vantage Point for the Study Calls to combat global poverty are resounding, even if they have not yet been met with effective response. National governments, donor countries, international financial institutions, United Nations agencies, NGOs, citizens from around the world join their voices to the call. The most comprehensive commitment to end global poverty is the United Nations Millennium Development Goals (MDGs) adopted in 2000 at the UN Millennium Summit by Heads of State from across the globe.
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Organization of the Report
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This Global Report is organized into four main sections. The first section outlines the approach to the Global Study.|
Approach to the Global Study
Introduction  This global study on poverty and exclusion was, by definition, an enormous undertaking. How can one grapple with the task of a global inquiry into the status of over 130 million people worldwide, and their fam-ilies? How does one account for the diversity of social, economic, political and geographic realities? We con-fronted this challenge by drawing on the immense capa-city of our international federation, our regional memb-ers, and our network of 200 national parent and family associations to reach people with intellectual disabilities and their families across the globe. We decided at the outset that it was essential that we draw primarily on their voices and knowledge. They are the experts in poverty and exclusion, they know it ‘from the ground up,’ and have a wealth of knowledge and ideas for change. The best way to engage and listen to those voices was through the local-to-global networks crea-ted over the past 40 years by Inclusion International and its member national and regional associations.The organizing principle for the research was a series of regional studies undertaken through the auspices of our regional members in each of five global regions – the Americas, Africa and the Indian Ocean, Europe, Middle East and North Africa, and Asia Pacific. This section of the report outlines the process for gathering and analyzing information, the challenges in doing so, and provides a regional perspective on the research process. |
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Gathering and Analyzing Information for the Global Report.
Each region designed their own research study within a set of common objectives:
The results of this information gathering and regional analyses are contained in regional reports and consolidated in this Global Report. Regional reports were prepared in all regions except for Asia-Pacific, where a regional consultation brought together people from this vast and most populous region of the world to share their experiences and perspectives on poverty and exclus-ion. Our international federation has not yet been able to develop strong national and regional networks across most countries in Asia-Pacific, although there is strong leadership and growing capacity in some countries. Consequently we do not have a detailed report from this region. |
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Challenges in the Research Many regions experienced similar difficulties and challenges in the research process particularly in relation to identifying individuals and families to participate, coordinating research across such vast areas and numbers of communities, and accessing reliable data. International statistical data sources on people with intellectual disabilities are largely unavailable given the different definitions used, and lack of attention to this group in global monitoring reports in education, children, human development, or other areas. There are no conso-lidated information sources to provide a clear picture of their social, economic, and political status on a regional, much less global basis. As well, in some regions it was the first time persons with intellectual disabilities and their families were being brought together to discuss shared issues. This created challenges in identifying participants and providing them with the comfort to speak up and have their voices heard. In some communities, the research process itself raised suspicion. In Zambia for instance, like in many other coun-tries studied, researcher facilitators had to go door-todoor in villages or ‘compounds’ to seek out families with a member with an intellectual disability. So used to hiding |
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their family member from view, families were often reluctant to come forward and there were limited means for communicating about the study. Facilitators reported a number of challenges in this process, including suspicion by residents that they were ‘satanists,’ or refusal to participate because research in the past had not produced tangible results, or simply because people could not be found at home.
Finally, while our international federation has developed extensive networks over the past four decades, there is still clearly much to be done. Many countries do not have strong civil society associations, and the capacities for networking within and across regions to share information and develop common analyses are extremely limited. This study makes clear the importance of developing more consolidated global information sources, and of strengthening our own capacities to link local knowledge and experience to national, regional, and international analyses. Overview of Regional Studies Each regional study presents a unique picture of the lives of people with intellectual disabilities and their families in that particular part of the world. We outline below the approach taken for each study. The Americas To grapple with the size and diversity of the Americas, Inclusión Interamericana (IIA) used three main research approaches. First, they organized a participatory research process with parent organizations in 13 countries in Latin America and the Caribbean. Participating countries included: Argentina, Bolivia, Brazil, Caribbean, Chile, Colombia, Ecuador, Guatemala, Honduras, Mexico, Nicaragua, Peru and El Salvador. |
The purpose was to engage people with disabilities, families, civil society organizations and governments in collecting three types of information:
Third, to consolidate the findings from across these country-level studies, and to draw on information from across the region, Inclusión Interamericana hosted a Regional Forum (Inter-American Forum on Poverty and Disability in the Americas: Towards Inclusion, August 2004) that brought together representatives from 24 countries in the Americas. Forum participants organized their analysis of findings from country reports into key themes related to civil society capacity buil-ding to promote change: empowerment, lobbying, advocacy, netw-orks, knowledge, information, and leadership. The 13-country part-icipatory research study and the findings from the Regional Forum on Poverty and Disability were published as “Voices from the Americas: Status Report on Poverty and Disability in the Americas.” Overall, participants found this research process resulted in: A body of information on poverty and disability, and country reports that can be used in mobilizing change; |
“Unless disabled people are brought into the development mainstream, it will be impossible to cut poverty in half.” James D. Wolfensohn, Former President, World Bank |
In the Africa and the Indian Ocean region, research was undertaken with three main strategies:
At the Regional Forum, delegates were divided into working groups to review information presented in panel discussions and share personal knowledge and experiences. Strengths, weaknesses, opportunities and threats to achieving the full rights and inclusion for people with disabilities and their families were identified. Their discussions covered a wide range of topics including:
The Africa Report draws on ANDD’s four-country study and the information gathered at the Ouagadougou Regional Forum to provide a rich picture and valuable information about poverty and disability in Africa.
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| More research and data in the area of po-verty and intellectual disability in Europe is needed to better und-erstand the issue of multiple disadvantage and to develop policy recommendation. However, without eff-orts to link the voices of real people to the process of policy dev-elopment little will be achieved. Even among other ex-cluded groups in soc-iety and people with other forms of disa-bility, the perspectives and experiences of people with disabilities themselves and their families are poorly understood and rarely heard. — From Poverty and Intellectual Disability in Europe |
Europe For the European regional study, four main approaches were used to gathering and analyzing information:
The country-level survey was comprehensive and collected information on the population of people with intellectual disa-bilities; sources of disability-related income; national expenditure on supports to people with intellectual disabilities; rates of edu-cation and employment participation; family caregiving and hou-sehold income; access to health care, housing, community act-ivities; and, civil society engagement in policy making. Together with statistical and other research sources, the Euro-pean report shows that despite differences in economic wealth of a country people across different countries face a common experience of social and economic exclusion. Having under-taken an extensive study and search for information sources, the report concludes that one of the main reasons for failure to imp-rove the status of people with intellectual disabilities is the lack of information. It makes a number of recommendations for more comprehensive information gathering and reporting by national, regional, and international bodies. At the same time, the report is clear that information on its own is not enough. Without engaging real people in local places in the process of developing policy “little will be achieved.” |
The Middle East and North Africa In the Middle East and North Africa (MENA) region, Inclusion International and its Committee of the MENA region have worked collabora-tively to develop a report on poverty. Two major sources for the report include:
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 For the purposes of organizing the regional study, and of developing a sub-regional network for the MENA region for ongoing collaboration, six sub-regions were ‘tentatively’ identified:
It was agreed that while some countries, such as, Iran were not formally considered a part of the MENA region, they have similar characteristics, opportunities, and challenges to its Middle Eastern neighbors. In the interests of being as inclusive as possible and to build the strongest possible network for disability advocacy in the region, representatives from this country were also included and contributed to the Regional Forum. Asia Pacific Our Report on the Millennium Development Goals (MDGs) |
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Inclusion International’s
The Middle East and North Africa (MENA) report indicates that in countries included in that study, the general poverty rate ranges from about 27% of the population in higher income countries to between 35% and 48% in less developed states, and increases to as high as 60% in Palestine. Like in other regions, people with disabilities and their families are highly over-represented among those in poverty. Case Study |
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P.R. is a girl with intellectual disability. She is 10 years old. Since she was diagnosed, she underwent several treatments in different towns. These are very expensive for her family. When she was 4 years old, her father abandoned her. Now she lives with her mother, but the latter does not always have enough money to buy all the medicines her daughter needs. The little girl has no friends. She usually accompanies her mother to various places (parks, artistic performances, In El Salvador, approximately 98% of people with disabilities are unemp-loyed.4 In Canada, over 70% of working age adults with intellectual disabilities are either unemployed or not in the labour force, leaving the majority without adequate income.5 The Europe study reports that 78% of people with severe disabilities age 16-64 are outside the labour force, compared to 27% without disabilities. In country surveys conducted for the Europe study very low employment rates of people with intellectual disabilities were reported for some countries: 3% for Bulgaria; 2% for Cyprus; .5% for Denmark; 2% for Greece; 7% for Hungary, 8.6% for Portugal, and 1.2% for Romania. Employment rates are not likely comparable across countries in Europe and North America given different survey methods and definitions. However, regardless of the country, the rates are extremely low. Costs of disability borne by individuals and families Un-reimbursed costs of care giving, health care, medications, and technical aids and devices contribute to individual and family poverty. In most majority countries of the south there are no reimbursement schemes, and in northern industrialized countries provisions are often meager, based on charity. In many accounts from the Americas study, the profiles of families show the impoverished conditions in which parents are trying to raise their children with intellectual disabilities. |
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The largest un-reimbursed cost is that of care giving provided by family members, usually mothers. As the Mexico country study reports, families provide 80% of care for family members with intellectual disabilities, and as in other countries mothers provide the bulk of care. The consequence of the almost exclusive reliance on mothers for needed support is often ill health and lost opportunity to earn income, as well as increased family debt. Caregivers also lose any future pension benefits if they have to stay out of the paid labour market to provide care to their family member. As a case study in the European Report on families with disabled children in the UK shows, extra costs of disability + inability to work (only 16% of mothers in this study were in full or part-time employment) = poverty + debt. For those living in many poor countries of the South, the Middle East and Asia Pacific, the cost of aids, devices, and needed health and social services is not the issue – these supports are not even available in their communities. The MENA study reports that families who live in villages, rural and remote areas face particular challenges in caring for a child with a disability. Poverty becomes ingra-ined in their lives through a combination of factors: lack of economic opportunity; women’s entrenched inequality (confining their role to the home, unable to advocate in their communities); community rejection of those with disabilities; and lack of services, transportation, and access to info-rmation (e.g. publications and media about rights and opportunities). Description of focus group participants in the Guatemala country study: The participants were four parents of the rural area, and eight parents of the urban one. One Ladin mother and 11 indigenous parents; only three of the participants know how to read and write, and none of the participants have done elementary school. All of them are from the Santiago Atitlan municipality and its communities. In two of these families, there are alcoholism and drug addiction problems; and most of the families eat two times a day. The average of the children of these families is six. There are some families with up to 10 children. Two families have two children with disabilities. Four couples assisted (mother and father). — Focus group, Guatemala Basic education is, and always has been, the key to freedom from subjugation, fear and want. Education is an effective weapon to fight poverty. UN Cyberschool Achieving Universal Primary Education for ALL Students By 2015, all children with intellectural disabilities will receive good quality, inclusive education with appropriate supports to ensure that each child reaches their highest potential. Our studies confirm the findings of many others: that children with intell-ectual disabilities are largely xcluded from regular education. They bear the cost throughout their lives. The actual number included in school in any dev-eloping countries is impossible to det-ermine definitively because of lack of published information. We know from the research gathered and accounts provided in this study that it is very small compared to the general population. Less than 5% of children in majority countries of the South complete primary school The World Bank Estimates that fewer than 5% of children with disa-bilities in majority countries do not complete primary education. It also suggests this “number may be growing due to global conditions of increasing poverty, armed conflict, child labor practices, violence and abuse, and HIV/AIDS.” The Africa regional study confirms this assessment. It reports very low education attainment of students with disabilities in countries studied – for example, with only 6.9% reaching high school level of education; 8.6% achieving basic education level; and 60% achieving less than basic education. Parents in focus groups in Tanzania reported that their children with disabilities are often segregated and many times are not in school. |
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The study from Europe reports that the majority of people with intellectual disabilities only attain primary education. As well, most countries surveyed in Europe found that individuals have difficulty accessing mainstream education. The Casitas Canton, jurisdiction of the Santo Tomas municipality, epartment of San Salvador, is located at 12 kilometres of San Salvador city, with approximately 3,000 inhabitants. Electric service exists in the majority of houses. Potable water service is not generalized. There is one school that
takes care up until sixth grade, without health service... The families participating in the focal group (for this study) are low income and low schooling families with children with disabilities that are making enormous efforts to bring up their children. Our regional studies point to laws and policies for more inclusive education in a number of countries in all regions. However, implementation is lacking. As a participant in the Regional Forum in Ouagadougou, Burkina Faso said, “Our country (Lesotho) has inclusive education by law, but in reality there is a lack of facilities and trained teachers.” Negative community attitudes reinforce exclusion. One participant in the Africa study reported “Even if parents succeed in placing their disabled child in a mainstream school, the problems continue because other parents often take their children out of that school because of the stigma.” We learned through our regional studies from MENA, Africa and the Americas that children with intellectual disabilities are so devalued in many countries that they remain invisible from view. Hidden by their parents who fear rejection and harm will come to them, they don’t go to school at all. In this context, opportunities for children and youth to learn and develop are practically non-existent. With no community services or public transportation especially in rural areas, and often prohibitive school fees, the vast majority of children with intellectual disabilities are not in school. As the Africa study reports the few financial resources tend to be saved so the “good ones” in a family can go to school. Mandated exclusion In several countries, families reported that it was not just a lack of services or inaccessible schools, or the cost of school fees. There was a legal barrier to enrolling their children in school, since a social ministry rather than the Ministry of Education had responsibility for educating children with disabilities and their children had no right to go to the regular school. Others reported that the only option for education was a private school run by a non-government organization and outside of the formal system. It was reported that even these options were unavailable in rural areas. In the Africa Regional Forum, one of the reasons participants advanced for promoting inclusive education was the recognition that it would be impossible to find enough resources to start new special classes for all the children with an intellectual disability now out of school. Long-term costs of exclusion People with intellectual disabilities pay a high price for being excluded from education, inclusive education in particular. Research shows that children with even significant disabilities who are included in regular education are much more likely to finish school, go onto post-secondary education and training, get jobs, have decent incomes, and become active members in their communities.7 Research for the Europe study reports a low percentage of people who have pursued secondary or upper secondary education. The report suggests that this “drastically reduces their chances to access the labour market.” Most regional reports also pointed to extremely low literacy rates for adults with intellectual and other disabilities as a result of lack of access to basic education. For example, the MENA study reports illiteracy rates in Libya of 55% among persons with disability, but even higher for people with intellectual disabilities – for example, 78% in Lebanon. Reports from the Americas – Canada, and from Latin American and the Caribbean – confirm this scale of the problem. The Africa report suggests the problem is even more challenging, because so many parents of people with intellectual disabilities have such low literacy levels: “High levels of illiteracy negatively affects parents/guardians of the persons with disabilities and their families in fighting poverty. This is as a result of not attaining a decent education level.” “Education is the key to the new global economy, from primary school on up to life-long learning. It is central to development, social progress and human freedom.” |
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Inclusion International’s MDG #3 Education |
| When a child with a disability is born into a family, the mother is often blamed. Many men then leave their wives and children and marry other women. There are therefore a lot on single mothers with disabled children. Source: Status of Poverty and Disability in Africa MENA study reports, “The common denominator among all families is the mother’s shouldering the foremost and main responsibility of caring for the family member with disability. In case she is not there, the burden falls upon the older sister.” We found the stigma and misconceptions associated with the birth of a child with a disability leads to family breakdown, particularly in countries in poor countries of the South. It is usually fathers who abandon, leaving mothers and sisters with the total responsibility for care. Community Services Access to community services also varies by gender, especially in countries where women’s sphere is still primarily the family home. A number of country reports from the MENA region, for example, suggest that the chances of men gaining access to rehabilitation services are almost double those of women with disabilities. Violent victimization Women and girls with disabilities are at a higher risk of violence than other women, in particular of sexual abuse. Research has suggested that over 60% of girls and women with intellectual disabilities have been sexually abused at some point in their lives.8 A common theme from participants at the Africa Regional Forum was that women and girls with disabilities are especially vulnerable to sexual abuse as they are often seen as not sexually active and therefore targets of attempted “virgin cleansing.” It was also reported, as confirmed by published research, that women with intellectual disabilities are targets for rape because they are considered unable to testify against the rapist Findings from the country studies for the Americas report also conclude that women with disabilities are more likely to be abused and mistreated than men, another reflection of the gender inequality that girls and women with disabilities face. Reducing Child Mortality Rate Among Children with Disabilities By 2015, the mortality rate of children who are born with a disability or become disabled in the early years will be reduced by two-thirds. Mortality rates for children with disabilities are estimated to be as high as 80% in countries where under-five mortality as a whole has decreased to below 20%.9 Our studies suggest that this 400% difference in mortality rates for children with disabilities cannot be explained by genetic or bio-medical factors alone. In reporting on this goal we look at other factors that make children and youth more vulnerable to disease and death. Lack of access to needed early intervention, rehabilitation, health care and other services Our reports show that in poor countries families with children who have a disability generally do not gain equal access to vaccination and early intervention programs, making them more vulnerable to disease, later onset disabling conditions and underdevelopment. Research in the Asia Pacific region has shown that even in countries like India with huge investments in early childhood development programs, in the slums and poorer areas where children with disabilities are. Case Study Kalifa was four months when Eugenia noticed that her daughter was not well. The doctors knew right away that she had Cerebral Palsy but just as the unusual birth, could not explain what went wrong. Eugenia’s family is not supportive of her position or her daughters and is very unwilling to help. She cannot maintain a full time job because she has no one to care for Kalifa nor to take her to school or therapy. She lives in a one-room shack in a squatting village without running water, lights or proper toilet facilities. Not to mention, no security. She accepts whatever financial aid she can get and is very grateful for the fact that at least her daughter is alive. Kalifa may never walk nor talk and her chances for a semi-normal life are very slim. Eugenia’s life of poverty is a major factor in Kalifa’s eventual fate. She cannot afford specialists or specialty treatments that are limited to the paying few. Her lack of a proper ducation lent a hand in her limited understanding of her daughter’s condition and treatments that are necessary. Both her and Kalifa have a very hard road ahead. Kalifa is now four years old. over-represented, this group remains largely invisible to program providers, and their health suffers as a result.10 The Americas report suggests lack of access to needed rehabilitation services makes children more vulnerable than they would otherwise be in their communities, and less able to cope when “natural disasters or unfavorable events” hit. The Africa report indicates that access to needed health care is a major problem in most countries. The primary factors restricting access is lack of services and high cost in impoverished communities. Health care facilities are often physically inaccessible. The report also indicates that health care professionals are unaware of the needs of individuals with disability and routinely deny them access to HIV testing, AIDS care, and place a lower priority on disabled individuals with AIDS when scarce AIDS drugs and services need to be rationed. In the Middle East and North Africa, countries surveyed for our research found that high health care costs outside major centres are a major factor preventing access. As well, medications are much less available. For those in more remote areas transportation is the main problem. If families do get to a hospital, access is often denied because of long waiting lists. In the Americas, families also reported that lack of transportation to health care centres and cost are the major factors preventing access to needed services and medications. Similar factors limiting access were found in the report on European countries, including negative attitudes by health care professionals, poorly trained health care workers and, to a less extent than developing countries, but still relevant, the cost of care. The cost of health care is a more acute problem for individuals and families in Central and Eastern Europe. Poverty and poor living conditions contribute to health risks for children Families with children who have a disability in poor countries are more likely than others to live in housing conditions that make children vulnerable to disease. The MENA study reports that with over-representation among the poor, children with disabilities and their families are more likely to live in unsanitary housing conditions, with over-crowding, bad ventilation and lighting, and without access to potable water and proper sewage systems. The report notes that all of these factors contribute to deteriorating health and psychological conditions of the disabled as well as their non-disabled parents and other family members. The consequence is families with weakened capacities to nurture a child with a disability. The Africa study found that when families have little food and access to health care, children with disabilities are often the last in line. As we witness increasing rates of malnutrition in the developing world, the report suggests children with disabilities are usually the worst off, systemically the ‘last in line.’ Poor access to early childhood education (programmes for children under 5 years) is identified as an overarching issue for all children but particularly for children with disabilities and poor children because most of the existing programmes are privately run and inaccessible. |
| Achieving the Rights of Children with Disabilities and Families By 2015, the rights of children with disabilities, as outlined in the UN Convention on the Rights of the Child, will be respected; mothers will receive adequate pre-and post-natal health care to ensure the well-being and healthy development of all children; families will get the help they need for the care and support of their family member with a disability. Using the World Health Organization’s definition of people with a disability, some 200 million children and youth – 10% of the world’s young people – are born with a disability or acquire a disability before age 19. Disability not only affects children, youth and adults with disabilities. It affects their families as well. The World Bank estimates that when families are included in the global picture of disability at least 25% of the world population is directly affected11 Thus, a discussion of the rights of children with disabilities must also take account of the place of families in securing those rights, and the rights of family members who are the front-line of support, advocacy and protection for so many children. Previous sections of this report make clear that children and youth with intellectual disabilities are particularly vulnerable to poverty and exclusion. With their families they lack access to needed health care, rehabilitation, and other community services. And, they are vulnerable to sexual abuse and victimization. |
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This section looks at how poverty and exclusion come to violate basic rights of children and youth with intellectual disabilities. These rights are protected under the UN Convention on the Rights of the Child and include rights to survival and development; to protection; and to participation. We also look at how the capabilities of families are undermined in the process.
Denial of rights to survival and development The Africa study reports, much like other regional studies, that negative misconceptions of disability are pronounced in many countries and underlie the exclusion and rights violations people with intellectual disabilities face. The report tells of people with disabilities commonly being referred to as ‘snakes,’ and being the object of witchcraft to cure the evil spirits or ‘bad luck’ disability signals. Especially in rural areas the shame of disability results in parents “locking their children up” to keep them out of sight; often because they fear for their child’s safety when they have no community support and they work away from home. The shame usually extends to the extended family, another reason to keep a child secluded. Stigma places children with intellectual disabilities at risk. It was reported that in some cultures, family beliefs and/or mythologies about disability result in infanticide. Short of this, stigma places children and youth at higher risk of disease because as we have seen they are excluded from needed health, rehabilitation and other services simply because of their disability. Devaluing attitudes are deeply woven into longstanding traditions and cultures. According to the MENA Report an individual’s disability is seen as a“decree of fate… accepted as a preordained, inescapable destiny… inevitable and there is no way to change it or alter anything about it.” The Report “The principle of‘all children, all rights’ is still much too far from being a reality.” suggests the marriage prospects of a non-disabled woman are more limited if she has sibling with a disability, an inte-llectual disability in particular. Prospective husbands fear the potential of disability being hereditary and the stigma that will result for him and his family. As reported in the Zimbabwe country report: “Negative attitudes by members of the general public in the areas visited… [found] that people who live around the areas understudy discriminate the disabled persons and their families…reviews [showed] that health officials have negative attitudes toward children with disabilities making it difficulty to access the much needed drugs and [they] end up being stigmatized.” Results from the Asia Pacific Regional Consultation sugg-est that disability remains largely hidden in many countries in the region, with people with intellectual disabilities often shunned and seen as having little or no value or potential, and not deserving of public investment. In most regions, including participants at the Africa Reg-ional Forum, self-advocates and families pointed to institut-ionalization of people with intellectual disabilities as a denial of basic rights. Institutions find their roots in the same kinds of stigma and stereotyping that leave children, youth and adults with disabilities isolated in their communities. Country reports did not generally report the numbers of people still in inst-itutions. The Canada country report indicated 10,000 to 12,000 people with intellectual disabilities are still institu-tionalized in that country. The Europe report finds that while persons with disabilities living in institutions are not generally affected by poverty-level income, they remain “victims of major social exclusion.” When stigma and rejection are combined with the depths of poverty, education exclusion and lack of access to needed services we have reported, children and youth with inte-llectual disabilities are left vulnerable outsiders either in institutions or in their own communities – hardly an environment for survival or development. In fact, they are left as victims for exploitation. Denial of rights to protection To a much greater extent than most other children and youth, those with intellectual disabilities are without the basic protections that keep them safe from harm and exploitation. Participants in the Africa country studies and at the Regional Forum report that children and youth with intellectual disabilities are so stigmatized in their communities that girls in particular are targets for rape and victimization. Some participants recounted that because it is assumed girls and women with intellectual disabilities are not sexually active, they become particular targets for rape for the purposes of ‘virgin cleansing’ – the myth that sex with a virgin cures HIV/AIDS. As families reported in the Zimbabwe study, for example, there are huge challenges to face in confronting the sexual exploitation of children with disabilities – one of the most demoralizing being that some men believe raping a disabled girl child cures them of HIV/AIDS. Another is the fact that authorities fail to recognize or address the systemic abuse. All regions report that authorities are ineffective in prot-ecting rights of children, youth and adults with intellectual disabilities, even though their rights are recognized. The Europe study reports that people with intellectual disabilities have difficulty in all European Union Member states, acc-ession countries, and Council of Europe member states in accessing rights protection and the justice system. All cou-ntries in the Americas study reported that legislative fram-eworks in force recognized and guaranteed the rights of persons with disabilities. They also reported “lack of regulations in the majority of these laws and their lack of compliance on the part of the governments.” In a township in Gauteng, South Africa I have come across 3 teenage sisters (all have an intellectual disability) in a special sch-ool who have been repe-atedly sexually abused by the neighbour who has HIV/AIDS. When the girls told their mother she beat up on them and said they had been lying. When this was reported to the police, they turned a blind eye. Upon my last visit to the school the one sister had already died (from HIV/AIDS related illnesses) and the princ-ipal informed me that the other two would not last very long. They looked sick and malnourished. — Report from a participant at the Ouagadougu Regional Conference |
| Denial of rights to participation and self-determination Reports from all regions indicate that children, youth and adults with intellectual disabilities are generally not encouraged or supported to develop their own ideas, raise their voices for what they want, or make their own decisions. The Africa report found that “children with disabilities are undervalued and are not given the opportunity to speak for them-selves, or express what they want to do. Decisions are made for them. At times people are making decisions that are not in the best interest of a person with a disability, or with that person’s input.” Rights to participation, to be involved in decision making with others, and to have your own rights to self-determination respected are fundamental rights in the UN Convention on the Rights of the Child. As we learned in the accounts from self-advocates, because children and youth are not enco-uraged to exercise these rights, there are few expectations that people will make their own decisions as adults, or be included in decision making with others. And, in many countries these low expectations are reflected in law: legal representation, guardianship and other laws remove people’s decision-making rights. The Africa study reports that without schooling most youth do not develop the skills they need for employment and more independence, and parents and others continue to make decisions for them. Yet when people with intellectual disabilities were asked in the study about their needs they said much the same as any others in their comm-unities: food, shelter, income, care from others, and “belonging to one’s community.” With low expectations from others, youth and adults do not get the skills training, or on-the- job opportunities. |
| Participants in our studies pointed many times to the lack of self-advocacy and family advocacy as one of the missing pieces in protecting people’s rights and supporting them to make their own decisions. As the Europe study suggests: “The absence of advocacy structures to facilitate personal decision-making of adults with intellectual disabilities may result in extensive use of measures of partial of full legal incapacitation…” The place of families in protecting rights Families of people with disabilities, especially parents, are sometimes seen by self-advocates to be part of the problem when it comes to protecting their rights, rather than the solution. It is true that people with intellectual disabilities have sometimes been harmed in their families, institutionalized against their will, and physically and sexually abused by family members. We heard reports of such abuse in our study, and heard reports of the hugely is proportionate numbers of children with disabilities who come into contact with child welfare authorities (where they exist) because of such harm. We heard in focus groups in all regions, that families could encourage decision-making rights, or deny them. They are the front line for self-determination for children, youth and in most cases adults with intellectual disabilities, simply because they provide the majority of supports individuals need. We heard from families about the stresses that raising a child with an intellectual disability can bring, not because of the disability, but because of the desperate living conditions that families forced into poverty must bear; the unavailability of needed services for their children; the lack of transp-ortation; the struggles that come with unemployment and living in remote areas; and the rejection they face from health care professionals, educators, and community members. These are not excuses. They don’t justify families Description notes on focus group participants in Colombia country study: Families that are in danger of abandoning their members who have a disability, or who are subjected to psycho - social risk factors and the violation of their rights; who belong to the lower level on the socio-economic classification; the majority, with no academic training and without a job, dedicated to the informal economy or begging. Located in the deprived outskirts sectors of the city of Medellin, in the department of Antioquia. |
| Interview with a Mother Myriam is forty-four years old. She works as an office assistant; she lives alone after her divorce. She educates 4 children: two boys and two girls. Myriam lives with her family in a small house near Charleroi. The eldest child assumes the father’s role. The second child, Eric, is 18. He has a severe intellectual disability… His disability is characterized by a physical hyperactivity; he is const-antly moving and therefore needs continuous support during the day and confi-nement at night. The two younger sisters often take care of their big bother on the weekends. They are very close to him and wou-ldn’t allow their mother to permanently leave Eric in the institution. Eric goes to his father every second Saturday from 10h to 18h. His mother prefers that he come back home, instead of going to the IMP (the Medical-Pedagogical Institute) in order to provide him a maximum of family life. It is very painful for her to have placed him in an institution in order to be able to work and secure the family needs. Even the word“placement” hurts her deeply. The institution has proved to be the only solution to allow for both work and private life. Eric stays there from Sunday evening to Friday evening. If he stayed with his family, he would need a support person from 7h to 17h; this system does not exist in the region and it would proba-bly cost a fortune. In the institution, Eric is put to bed at 19h and is locked into his room until the next morning. failing to protect child rights. But the accounts from this study help to understand what they struggle with. We also heard reports of families placing their children in institutional care, but most often because they had no choice. The MENA study emphasizes that families of people with disabilities are an essential asset in advancing inclusion in the region. They make it possible for people to be cared for and supported in the family home and in the community. However, the report also finds that because of the broader community context people end up being confined in their families. For the most part there remain entrenched negative attitudes and rejection of people with disabilities in immediate and extended families and the clan; and at school, recreation, health care centres, places of worship, public spaces, and other places in the community. Consequently, disability is still largely a private issue and hidden from public view as much as possible. |
| Resoundingly, we also heard that families are among the most committed of advocates to their family members with intellectual disabilities. They can be a bridge between a person with an intellectual disability and their rights; between a person and their community – friends, school, training work, comm-unity services if they can get them, and social participation. But as we were told many times over in this study, they can only play these roles effectively if they are supported by their commu-nities, and if they have the information, basic resources, and civil society and advocacy support to do so. Story of Ousmane and his family Ousmane is a 15-year-old boy who has an intellectual disability. He was born in the small village of Sourgoubila, 32 km outside of Ouagadougou, the capital of Burkina Faso. He has a polygamous family. His mother is the fourth wife of his father who has many other children. Until he was ten he was kept anonymous and hidden. In polygamous families there is a lot of competition between wives and half-siblings. As a result Ousamane’s mother kept him hidden out of shame and feelings of inferiority for being the wife who had a child with a disability. Thus, he had been given no value or respect within his family. In the last few years his mother allowed him to wander around the village, and brought him to the fields and taught him how to cultivate crops. Slowly the community began to interact with him, and as they did, the family began to become more accepting of him too. They involved him in family discussions and events, and started to realize what he is capable of. |
| Combating HIV/AIDS Among People with Disabilities By 2015, the spread of HIV/AIDS in the community of people who 've a disability will begin to be rever-sed and children with disabilities who have been orphaned will be supported and cared for in the community. The issue of HIV/AIDS came up many times in the Africa study. We do not have data on the extent of HIV/AIDS among people with intellectual disa-bilitie and their families. However, the Africa study provided many accounts of the devastating impact on children, youth and adults with intellectual disa-bilities and their families. Yet until rec-ently family-based organizations advo-cating for the rights of people with int-ellectual disabilities have not been act-ively involved in HIV/AIDs campaigns. HIV/AIDs workers have not conside-red the needs and issues affecting the community of people with intellectual disabilities. And they are not counted in the statistics. The Africa study points to some of the causes and issues to address. Sexual Abuse The terrible accounts cited above show that one of the biggest challenges in combating HIV/AIDS among child-ren, youth and adults with intellectual disabilities is the stigma and isolation that make them so vulnerable. Lack of Education Lack of education is a major risk factor involved in HIV contraction for people with disabilities. Because many children and youth are not in school, they are not rec-eiving education about sexuality and safe sex. So when they become sexually active, they are less able to protect them-selves. As well, it was reported that parents often assume their children with intellectual disabilities will not become sexually active, so they don’t provide the education their sons and daughters need. |
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Vulnerable Families Regardless of how they acquire HIV/AIDS, people with intellectual disabilities live in families and communities where others who support them are also at risk. We heard many accounts of people with intellectual disabilities who lost pa-rents, and the support systems they provided, to HIV/AIDS. The lucky ones have grandmothers to support them, as pr-ecarious as their situation might be; it was reported to us that others are simply abandoned. Ensuring Environmental Sustainability for People with Disabilities By 2020, achieve significant improvement in the lives of people who have an intellectual disability and their families who live in extreme poverty. UN Millenium Development Goals target the living conditions of people who live in extreme poverty and specifically the 100 million people living in slums. The regional studies exa-mined some of the issues affecting people with disabilities living in these conditions and some of the reasons why this group is over epresented in shanty towns and other such communities. They also point to factors that underlie the social and conomic instability in some countries and comm-unities that are making it impossible to address the exclusion faced by people with intellectual disabilities and their famlies. Precarious livelihoods The, at least, 26 million people with intellectual disabilities who live on less than 1$ a day live very precarious lives – many with no roof over their head, living in shanty towns, or remote villages, without adequate food, water, or basic sanitation. Their families are among the poorest in their countries, and rely on very low earnings in the formal, informal or self-employed sectors; or on begging and scavenging. When the costs we reported in MDG #1, of caring for a son or daughter with an intellectual disability are combined with living in extreme poverty, the math simply does not add up. In conditions of such deprivation individuals with intellectual disabilities and their families have little chance of dev-eloping the human, socio-cultural, economic, political and other capabilities that mark the path out of poverty. Case Study Eighteen year old Ringo lives in a fishing village with his seventy five year old grandmother. Ringo has severe physical disability and mild to moderate speech impairment. His speech is understood mostly by his grandmother. He is small in stature and seems to be under fed and poorly kept. Along the shores of one of Jamaica’s popular fishing village in St Catherine, Ringo’s home can be found among many shacks. The people living within this community make themselves omfortable regardless of the state and conditions they are living in. Ringo’s grandmother’s house is made from pieces of old zincs, pieces of board that are old and rotten. The roof leaks and there are holes and cracks through the walls. The dwelling consists of three rooms. The grandmother occupies one, an elderly gentleman lives in another and also a son of hers shares the other room with a common-law-wife and two children and a brother of his. You are wondering now where Ringo stays. Well, Ringo is put away at the back of the building in a make shift-room… When Ringo’s grandmother was asked about sustainability and survival for herself and Ringo she said her children sometimes provided her with food and the necessary things she needs. She quickly added that Ringo is given a meal three times each day. Ringo is left at the back all alone without friends, no love and comfort. His mother left him with his grandmother because of her other four children. She said Ringo’s brothers and sister are afraid of him. They complain that he drools and wet the bed, among other things. When we asked Ringo’s mother what she will do about Ringo if the grandmother should pass away (die), she calmly said, “When the time comes she will deal with that”. |
| For example, the Americas report profiles families included in one focus group this way: one parent (mothers) homes with absent fathers, with an average size of four to eight members; without schooling, unemployed or dedicated to the informal economy, with dissatisfaction of their basic necessities, [with children with disabilities] in high risk of being abandoned and with little protection. The Zambia country study reports that 85% of people with disabilities and their families rely primarily on agriculture – growing maize and vegetables and selling their produce at market. With the majority of families relying on agriculture, the economic consequences of drought are hitting this group in particular. The Africa regional report finds that the extreme poverty, stigma and exclusion that many people with intellectual disabilities and their families face marginalize them even more in communities already suffering from social alienation, poverty, unrest, environmental degradation and lost productive capacity. Lack of basic services The Africa, Americas, and Asia Pacific studies found that in many makeshift communities, slums and shantytowns there are disproportionate numbers of people with disabilities. People with disabilities and their families often live in these settlements without access to basic services, sanitation, and few income generating opportunities. Living conditions can often cause or exacerbate disability-related conditions. The Africa country and regional studies report that many families do not have access to clean water – water is either not piped into their communities, or it is unreliable, or there is no potable water available. Many also report limited means to transport water. |
| Natural disasters and environmental degradation It was also reported both in the Africa and Americas studies that in sit-uations of natural disaster people with disabilities are often left behind or aba-ndoned by their community. As we've reported above, many are already iso-lated because of stigma and rejection by their communities. When disasters hit we were told that aid workers don’t know where people are, and so they can't be evacuated from their communities. Both studies report that environme-ntal degradation is taking its health and economic toll on people with intellect-ual disabilities and their families, driving even more into precarious living condi-tions and deepening their poverty and deprivation. Life in conflict zones Countries in many parts of the MENA Region are in situations of conflict and war. The Regional study reports conflicts are contributing to rising rates of poverty, disability, environmental instability, and a sharp rise in mental illness in many communities. Conditions of political unrest and conflict exacerbate exclusion of vulnerable groups and the political environment in some countries makes it difficult for civil society organizations to promote human rights. Huge displaced populations arising from conflicts and wars in the region pose unique challenges for integration of disabled members into the broader community, which the MENA report notes is a main source of needed social support and services. The stresses of daily life under conflict, forced ovement from their communities because of war, and life in refugee camps confound and often make impossible parents’ capa-city to secure basic necessities of life for their son or daughter with an intell-ectual disability. |
| Social and economic instability Country and regional studies in Africa and the Americas suggest that current trends in the broader political, economic, environmental and social context makes action on disability issues extremely difficult in some countries and communities, if not impossible. The Americas study, for example, suggests the dominant economic agenda in many countries is to reduce public expenditure, privatize public services, and expand foreign investment and thus capital mobility. The results, par-ticipants in the Regional Forum suggested, are weakened domestic economies; dependence of many countries on tra-ding regimes beyond their control; economically polarized populations, all of which breed social conflict and political apathy. Participants suggested that in this context, gover-nments can diminish their role and claim insufficient finances to address poverty and invest in needed health care, housing and support services. Participants at the Americas Regional Forum told us that countries in the region are witnessing what happens when these trends combine with cultural attitudes about disability and little recognition of rights in the new democracies in the region. A cycle of poverty and exclusion is being created for individuals with disabilities and their families that seems almost impossible to break. The Americas study suggests these trends are creating a breeding ground for corruption and growing criminal netw-orks in some countries, further destabilizing their social and economic foundations. Participants suggested that in these contexts there are few, if any, prospects for countries to slow the tide of deteriorating living conditions for people with int-ellectual disabilities and their families. |
| Developing a Global Partnership for Development and Inclusion By 2015, global efforts to promote good governance and global partnerships will contribute to the human rights of people with intellectual disabilities, including citizenship and economic rights. In promoting partnerships for global development, the UN and world leaders have recognized the need to base these partnerships on good governance structures, policies and practice. But what should count as ‘good’? Our findings on the MDGs should make clear that people with intellectual disabilities and their families are not benefiting from current governance structures, public policies or partner-ships for development. Studies from all the regions show why. Excluded from dialogue on public policy and poverty reduction strategies All regional and country studies rep-ort that disability and family organizati-ons are not effectively engaged as par-tners in policy development at national, regional or global levels. The Africa and Americas regional studies indicate that national government ‘Poverty Red-uction Strategies’ do not effectively en-gage civil society organizations. As the Europe study notes there has been little or no attention to the role of families within policy development in countries in that region. Processes for developing National Action Plans for social inclusion – being coordinated with shared objectives across the European Union – are not generally visible or transparent, and there are few chances for civil society organizations to influence policy. The same exclusion holds true across all the regions. Participants at the Asia Pacific Regional Consultation also reported that people with intellectual disabilities and family organizations in their region are not included in regional-level planning processes. And, the MENA study reports there is no representation of people with disabilities in national advis-ory committees or other consultative bodies to governments. Civil society capacity is lacking Part of the reason for little or no presence in policy dialo-gue is that civil society capacity is lacking. Regional reports point to the existence of a growing number of disability and family civil society organizations, but these remain for the most part highly localized without the resou-rces for broader mobilization across communities, and without national and international linkages. Consequently, the disability issues they are trying to profile are not getting the broader public or po-litical coverage that would result in real investment in disab-ility. At the same time, family represen-tatives in the Regional Forums for this study stressed that they cannot begin tackling national and international policies all at once. They must first be able to connect locally with other families to build their co-llective capacities before they are able to make a difference on the global scale. As we have seen in our study, the families most affected by underdevelopment and entrenched poverty have very limited capacity to organize for change. Families already marginalized in their communities lack the political clout and experience to have an impact on policy decision making. The Africa report stresses this point: even if there were opportunity to participate in poverty reduction strategy consultations with governments, civil society, organizations, especially family organizations, would not have the capacity to contribute effectively. The report suggests that in large part this is because there is no tradition of local civil society advocacy for people with disabilities. It is also because, as we see in the accounts from Africa, individuals and families are consumed in so many cases with basic survival. |
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Participants at the Asia Pacific Regional Consultation report that national family-based organizations have little or no capacity to participate in anti-poverty strategies and that no strong regional capacity exists to work on behalf of persons with an intellectual disability and their families. Participants also told us that if special programmes for people with disabilities are funded they are usually too small scale to make a difference. Moreover, they do not tackle the larger social and economic issues driving people into poverty and keeping them excluded. Study participants suggested that aid agencies and international institutions need to invest in labour market policies, health care systems, education policies and infrastructure, gender equality, the HIV/AIDS pandemic, and environmental sustainability. But they need to do so in ways that take account of the extensivve needs of people with intellectual disabilities and their families. |
Towards a Global Agenda to Combat Poverty and Exclusion
Introduction
Despite the widespread exclusion and poverty they face daily, people with intellectual disabilities and their families were eager and willing to share their stories and add their voices to this Global Study. Through forums and consultations across the globe, individuals and families expressed their hopes and offered ideas to end the vicious cycle that keeps them poor and excluded. At Regional Forums in Ouagadougou, Burkina Faso; in Managua, Nicaragua; in Tunis, Tunisia; in Bucharest, Romania; and in Bangkok, Thailand, people with intellectual disabilities and their families reviewed the country studies and information they had gathered through the research. They presented their findings to each other in a number of ways. Some read their research papers – analyzing country survey findings and pointing to regional implications. Others presented PowerPoint projections on the demographics of poverty, employment, or institutionalization. Policy experts invited to the Forums shared policy proposals to address issues. Participants showed documentary videos and photographs that provide graphic accounts of people’s exclusion. Often self-advocate and parent presenters didn’t report the statistics on poverty, but rather told its narrative in their daily lives. The research presentations were compelling, heart-breaking and inspiring. In focus group discussions that followed, participants sifted through the findings, reflected on what they heard, talked about what they felt, analyzed and debated what it all meant. As participants began to explore the threads across country reports and personal accounts, larger regional trends began to emerge. Participants then examined opportunities for change, and challenges that would need to be confronted at all levels – local to global. With this view in mind, they defined the steps they believe must be taken to begin closing the gap in achieving the Millennium Development Goals. In this section we draw together the recommendations from across the regions to chart a global agenda for change. First, we report what each regional study recommends must be done to confront poverty and exclusion. As one reads these prescriptions for change, the foundations they seek to lay down become clear. Together these reports show us the building blocks for a Global Agenda to Combat Poverty and Exclusion. And, they provide the directions to put them in place.
Africa
In developing recommendations for this region, participants took into account the economic underdevelopment, extreme poverty, weak civil society capacity and the governance challenges across much of the region. These factors directly affect the situation of people with intellectual disabilities and their families, and the organizations that advocate on their behalf. To combat poverty and exclusion in Africa people with intellectual disabilities and their families, in country reports and at the Regional Forum, recommend:
➤ Challenge Discrimination, Misconceptions and Social Exclusion
• Raise awareness of families and communities with information, arts (such as dance, music and theatre, spaces for exchange of ideas)
• Work with children and youth on self-esteem, fears, self-actualization
• Link with schools and universities for awareness-raising
• Work with religious leaders and groups (because they have a lot of influence on the people)
➤ Empower People and Families to Address Poverty
• Provide vocational training for disabled people
• Increase access to quality employment
• Provide access to income generating activities – micro finance, low interest loans from lending institutions, income generating groups to solicit credit
• Provide housing access – low income-income housing for parents with children with disabilities; reserved housing and access to credit for people with disabilities to purchase
• Ensure governments provide financial aid to families
➤ Empower people for “Making our own Choices”
• Train disabled people to make their own choices
• Train families and parents about people’s rights
• Challenge perceptions by using examples of good practice while being sensitive to cultural practices
• Include disabled people actively in decision-making processes
➤ Achieve Gender Equality
• Ensure gender equality in families, school, community, and employment
• Promote fathers becoming more involved in caring for their children with disabilities
➤ Make Inclusive Education Mandatory
• Make inclusive education mandatory
• Assure free education, enroll children at school near their home, and ban special classes
• Invest in teacher training
➤ Assure Accessible Communities and Services
• Make all schools and universities accessible
• Link families to service providers and better coordinate with communities and governments
• Ensure National Development Plans in vest in accessibility
➤ Deinstitutionalize People
• Break through the barriers of exclusion caused by institutions
• Ensure people with disabilities are no longer put in institutions
➤ Stop HIV/AIDS and Sexual Offenders
• Empower and educate girls and boys
• Ensure strong laws and prosecution of sexual offenders
• Provide information and support to parents (the taboo needs to be broken)
➤ Build capacity of disabled people and family organizations (especially in rural areas)
• Establish disabled persons’ organizations at national, regional, district, ward and village levels for networking and empowerment – to build awareness, mobilize communities, and have their voices heard (grass roots approach)
• Promote family empowerment – create family networks, link families to service providers, provide parent-to-parent training, establish sister-city programmes, use the web
• Promote leadership development to address issues such as access to schools, infrastructure and health services
• Establish sub-regional committees across Africa to support efforts
➤ Mobilize National and International Networks
• Build partnerships with international organizations working in local areas
• Use South to South collaboration to share experiences and information
• Link African NGOs with Northern NGOs that have already “won” the battle
• Make sure partnerships involve individuals and families
➤ Push for Inclusive Polices and Legislation
• Connect people and families to influence government
• Sensitize political structures and policy makers
• Establish budgets for disability-related services at national, province, district, and constituency levels and integrate disability issues into all aspects of government and services and the district leve
• Influence existing programs – building a strong voice for inclusion
The Americas
The ‘Voices from the Americas’ Report focuses on Central and South America and the Caribbean and identifies economic, political and structural drivers of poverty and exclusion of people with intellectual disabilities. We also received country reports from Mexico and Canada in North America. Participants suggest that effectively engaging civil societies in the emerging democracies of the region, and strengthening social solidarity, is essential to effective strategies for the region. With this understanding, participants in this region recommend:
➤ Increase social solidarity
• Expand solidarity efforts for promoting inclusion and rights for people with disabilities and their families
• Establish alliances with different social sectors aiming to eliminate existing social and economic barriers
• Increase awareness about disability through widespread community information programmes
• Generate effective connections between international organizations, NGOs, governments, universities, and association of parents and people with disabilities.
➤ Strengthen civil society capacity and collective movements
• Strengthen capacity to influence policy, demand compliance of policy and law with human rights, and develop more inclusive policies
• Fortify disability organizations and increase their capacity to influence broader civil society organizations
• Involve civil society organizations in the struggle against poverty, without losing the human rights perspective
➤ Mainstream disability in poverty reduction strategies
• Promote direct participation of people with disabilities, their families and specialized civil society organizations in defining structured policies for poverty reduction
• Ensure policies are based on community experiences
• Increase visibility of the issues of poverty for people with disabilities
• Trigger social debate about poverty issues pertaining to people with disabilities
• Insist that the problem of poverty and disability is addressed in both the public and private sector
➤ Ensure education policy and practice addresses the needs of all learners
➤ Integrate gender equality for women with disabilities in mainstream social and economic policies
➤ Assure access to health and health care:
• Track health indicators for children with disabilities
• Ensure access to vaccine programmes
• Develop awareness of health care professionals, families and community workers
• Implement processes of community-based rehabilitation
➤ In action plans on child rights address needs of children with disabilities
➤ Ensure HIV/AIDS education and drug programmes target vulnerable populations including people with disabilities
➤ Mainstream disability in homelessness strategies
• Include targeted programmes to address the needs of
people who have a disability and their families
• Take account of the barriers they face to economic, social, and political participation
➤ Address inequalities among countries and promote economic and social participation of all groups
• In multilateral investment strategies
• In free trade policies
| Summary of Findings It is undeniable. People with intellectual disabilities, their families, and their organizations face an enormous gap in achieving the Millennium Development Goals. They paint a stark picture of exclusion: Extreme Poverty A staggering 26 million people with intellectual disabilities live on less than $1 a day. Even people with intellectual disabilities living in northern industrialized countries are hugely over-represented among the poorest in their countries. Families are similarly affected – with one or more parents not able to access paid work, or driven out of the labour market because they have no support to care for their family member with a disability. This makes their economic and social situation that much worse, contributing to a cycle of poverty and exclusion. Exclusion from Education Less than 5% of children with disabilities complete primary education. Large-scale exclusion from regular education – pre-school, primary and secondary schooling – leaves people without the knowledge and skills for employment, without basic literacy skills, without the support networks that come with inclusion, without recognition from others about the contribution they can make. The impact of exclusion from school extends to family members who care for children who are not in school and are therefore unable to participate in the labour market. The long-term consequences in terms of gender inequality, poor health, isolation and abuse, family poverty and poor living environments are irrefutable.  Gender Inequality Gender inequality compounds the disadvantage and discrimination that comes with disability. Those children with disabilities who are lucky enough to get to school are more likely to be boys than girls. Along with cultural forces that tend to advantage males, gendered differences in education participation of children with disabilities multiply the inequalities later in life. Men with disabilities are far more likely than women, many more times likely in some countries, to be in paid employment. The gender/disability nexus not only affects people with disabilities, but touches their families as well. Mothers who have a child with a disability generally bear the great majority of care giving responsibilities, and thus are not able to engage in other activities including employment and cultural activities. Myths and stereotypes about disability also disadvantage mothers – ‘blamed’ in some cultures for bearing a child with a disability – often devaluing and isolating them even more. Child Mortality Despite growing investments in early intervention and child development programmes in all regions of the world, our study found that children with vaccination and early intervention programmes is very poor. Cultural devaluing of people with disabilities is so intense in some communities that infanticide of newborns with disabilities is the result. Health and other challenges associated with childhood disability are exacerbated as families are driven into poverty. In families’ attempts to feed and care for all family members, children with disabilities are often the last in line. Add to this, disproportionately high rates of home-lessness, poor sanitation, lack of education and health care for mothers and children with disabilities and the result, as despairing as it is, seems inevitable: a 400% higher level of mortality among infants with disabilities in some countries. Child and Family Rights Denied – Our study found far-reaching violation of the basic rights of children with disabilities and their families in countries across the globe. Their exclusion from early intervention programmes, from education, from supportive community services, and from employment opportunities for parents is nothing less than that. Many of the country and regional reports for this study point to impressive national and international laws and policies to protect and advance rights. Yet on the ground, in people’s lives and communities, when they are iso-lated in institutions, these rights are not being realized. The horrific accounts, like those of systematic rape of girls with intellectual disabilities cannot go unaddressed. Those part-icipating in the study urged enforcement of existing rights as an essential step in alleviating the basic violations of human life we have witnessed. When we add it up, the evidence is clear: basic development and survival, protection and participation rights under the UN Convention on the Rights of the Child are denied to children and youth with intellectual disabilities. Devastating Impact of HIV/AIDS – Family-based organizations advocating for the rights of people with intellectual disabilities have not been actively involved in HIV/AIDs campaigns and HIV/AIDs workers have not considered their needs and issues. Yet people with intellectual disabilities are just as affected if not more than other members of their communities, given the high rates of sexual abuse they experience, and the lack of access to information on reproductive health. As families struggle to cope with the impact of a parent’s or sibling’s HIV/AIDS, there are even fewer resources and support for a family member with an intellectual disability. In the hardest hit regions of Africa if parents die of the disease a child with a disability is often abandoned. Environmental Instability – People with intellectual disabilities and their families are disproportionately a homeless population, living on the street or in inadequate housing and in parts of Africa, Asia, and the Americas in slums and shanty towns often without even the most basic needs met. In these situations, their housing and community environments contribute to ill-health, lack of education and opportunity, and deepen poverty. In many countries in Africa and Latin America, large numbers of people with intellectual disabilities live in households that rely entirely on agriculture for income and employment, or live in remote areas and are particularly vulnerable to drought and natural disasters. Environmental degradation impacts directly and disproportionately on people with intellectual disabilities and their families. In areas of conflict, where social and community environments are particularly precarious, the impact on households with a disabled family member is that much more acute. With intellectual disability so structurally related to poverty, inadequate housing, fragile livelihoods and environmental instability – equal life chances are impossible. Global InAction – Through this study individuals, families, and researchers reflected on effectiveness of government policies, poverty reduction initiatives and development assistance in addressing the deep gap in achieving MDGs for people with intellectual disabilities. We found that issues faced by people with disabilities are largely invisible to policy makers, decision makers and world leaders, even though they may be committed to combating poverty and exclusion. Civil society organizations are fledgeling and do not have the resources and leadership capacity to be heard by governments and donor agencies. The result is global inaction on disability, poverty and exclusion. Even a cursory look at development agencies and investment strategies shows two trends. They either ignore the plight of people with disabilities and their families altogether, or target disability programs in ways that largely keep them out of mainstream social and economic development. The MDGs proved a powerful tool in this study for shedding light on the realities of people with intellectual disabilities and their families. The findings point to a glaring divide between a world the MDGs aspire to, and the realities for the tens of millions of people with intellectual disabilities and their families who are left behind. |
 Despite the widespread exclusion and poverty they face daily, people with intellectual disabilities and their families were eager and willing to share their stories and add their voices to this Global Study. Through forums and consultations across the globe, individuals and families expressed their hopes and offered ideas to end the vicious cycle that keeps them poor and excluded. At Regional Forums in Ouagadougou, Burkina Faso; in Managua, Nicaragua; in Tunis, Tunisia; in Bucharest, Romania; and in Bangkok, Thailand, people with intellectual disabilities and their families reviewed the country studies and information they had gathered through the research. They presented their findings to each other in a number of ways. Some read their research papers – analyzing country survey findings and pointing to regional implications. Others presented PowerPoint projections on the demographics of poverty, employment, or institutionalization. Policy experts invited to the Forums shared policy proposals to address issues. Participants showed documentary videos and photographs that provide graphic accounts of people’s exclusion. Often self-advocate and parent presenters didn’t report the statistics on poverty, but rather told its narrative in their daily lives. The research presentations were compelling, heart-breaking and inspiring. In focus group discussions that followed, participants sifted through the findings, reflected on what they heard, talked about what they felt, analyzed and debated what it all meant. As participants began to explore the threads across country reports and personal accounts, larger regional trends began to emerge. Participants then examined opportunities for change, and challenges that would need to be confronted at all levels – local to global. With this view in mind, they defined the steps they believe must be taken to begin closing the gap in achieving the Millennium Development Goals. In this section we draw together the recommendations from across the regions to chart a global agenda for change. First, we report what each regional study recommends must be done to confront poverty and exclusion. As one reads these prescriptions for change, the foundations they seek to lay down become clear. Together these reports show us the building blocks for a Global Agenda to Combat Poverty and Exclusion. And, they provide the directions to put them in place. |
• Challenge Discrimination, Misconceptions and Social Exclusion
• Empower People and Families to Address Poverty
• Empower people for “Making our own Choices”
• Achieve Gender Equality
• Make Inclusive Education Mandatory
• Assure Accessible Communities and Services
• Deinstitutionalize People
• Stop HIV/AIDS and Sexual Offenders
• Build capacity of disabled people and family organizations (especially in rural areas)
• Mobilize National and International Networks
• Push for Inclusive Polices and Legislation
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 The ‘Voices from the Americas’ Report focuses on Central and South America and the Caribbean and identifies economic, political and structural drivers of poverty and exclusion of people with intellectual disabilities. We also received country reports from Mexico and Canada in North America. Participants suggest that effectively engaging civil societies in the emerging democracies of the region, and strengthening social solidarity, is essential to effective strategies for the region. With this understanding, participants in this region recommend:
• Increase social solidarity
• Strengthen civil society capacity and collective movements
• Mainstream disability in poverty reduction strategies
• Ensure education policy and practice addresses the needs of all learners • Assure access to health and health care:
• In action plans on child rights address needs of children with disabilities
• Address inequalities among countries and promote economic and social participation of all groups
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The MENA report suggests two main factors need to be taken into account in developing strategies to address the poverty and exclusion of people with intellectual disabilities and their families. First, unrest and situations of conflict impact every aspect of society. Second, religious and cultural differences characterize the way in which people organize themselves and the way that disability is perceived by society. In considering and analyzing findings from the 22 country reports in the region, participants recommend:
• Target public awareness programs to people with disabilities, families and decision makers at all levels:
• Strengthen legislative, policy, and enforcement measures in education and employment to:
• Establish and strengthen coordinated National Plans to advance integration of people with disabilities, and ensure implementation of plans • Establish measures to coordinate and implement laws and policies:
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• Improve Access to education and lifelong learning
• Fight against discrimination of persons with disabilities in employment
• Create equal access to mainstream health care.
• Caring at home: Focus on families of persons with intellectual disabilities
• Ensure legal capacity and access to rights and justice for everyone
• Address the link between poverty, exclusion, and institutionalization
• Compensate for extra costs of disability
• Develop specific measures for persons with intellectual disabilities in Central and Eastern Europe
• Create a better database for monitoring of social inclusion policies
• Mainstream intellectual disability in national, European, and world policies
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This region is home to over 50% of the world’s population on 20% of its land area. Asia Pacific embraces diverse populations, millennia old civilizations, religions and traditions in the midst of the world’s fastest growing economies. It includes countries like India and China with the largest populations of any other countries in the world, with distinct political systems, and rapidly developing economies; alongside already industrialized countries with comparatively small populations like New Zealand and Australia. There is widespread poverty in many areas of the region.In this context, and with limited disability and family civil society organizations in the region, it was impossible in the time frame and with resources available to undertake country or region-wide studies for the purposes of this Global Report. However, a Consultation was undertaken with representatives from countries throughout the region. Results point primarily to the need to develop civil society capacity to raise awareness, encourage knowledge sharing and advocate for policy development. These are essential first steps in addressing poverty and exclusion. Participants in the consultations in this region recommend:
People with intellectual disabilities and their families have written a comprehensive agenda to combat their poverty and exclusion in every region of the world. In these recommendations, there is a consistent message to communities and broader civil society, to teachers, employers, administrators, health care and other professionals, to governments and international agencies: help lay down the foundations for a good life for all of us. We want to believe that one of the main reasons these foundations are not yet in place for so many people and their families, is that others don’t yet know how to lay them. From our own experience we know that it is possible, even if at the beginning it looks challenging and unworkably complex. Foundations begin with building blocks. In reviewing the comprehensive Regional Agendas participants in this study created five main building blocks with which to build the foundations of a good life for all. These are the starting points for a Global Agenda to Combat Poverty and Exclusion of People with Intellectual Disabilities and their Families:
First, civil society organizations of people with intellectual disabilities and their families must be created, strengthened and supported – at all levels from local communities to global networks. Strategies must empower people to share their stories and knowledge, build networks, and raise their voices for change. Solidarity across civil society is critical, so that shared movements and common agendas are created. Second, governments play a critical role. Their laws and policies must explicitly assure rights protections for people with intellectual disabilities and their families. These must provide the basis for policies and programs that are resourced, implemented, coordinated across levels and departments of government, monitored, and evaluated. Most urgently, the issues of people with intellectual and other disabilities must be fully integrated into national, regional, and international social and economic policies and governance structures. From the outset, policy making must engage civil society organizations of people with intellectual disabilities and their families. Third, donor agencies and international institutions must dramatically expand their policy focus and investment strategies on people with disabilities and their families. The depth of poverty and exclusion is growing. Social and economic means and capacities are diminishing for far too many people and their families. The cycle of poverty and exclusion is becoming a downward spiral. It must be stopped. People must be given the basic building blocks and a foundation for a good life. With that they will learn, thrive, contribute, and make a difference in their communities. There are a number of recommendations in the Regional Agendas for multilateral and donor investment strategies to restructure and redirect international financing, policies and practices. There is also an urgent call to take the necessary steps in concert with people with intellectual disabilities, their families, and their local-to-global networks. They bring knowledge, expertise, resources and the capacity to make investments work on the ground, in communities, where it matters in people’s lives. |
 Twenty-six million people with intellectual disabilities are living on less than $1 dollar a day. Relative poverty rates in countries around the world place the vast majority of people with intellectual disabilities at the margins of community life; many have fallen through its web altogether. Exclusion is pervasive in people’s lives. We began this Global Study to better understand the conditions that have led to these outcomes, and to better grasp what might be done. Across the globe people with intellectual disabilities and their families have gathered together over the past three years to shed light on their lives. To tell it how it is. To share knowledge. To foster hope together that their contributions and ideas will make a difference. We have laid out a Global Agenda to Combat Poverty and Exclusion. We have written the Agenda to take account of diverse realities in countries around the world. We have a roadmap for change in every region of the world. And we have a simple message. Hear our voices. It could make all the difference. |
Introduction
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| List of Countries Participating in the Global Study: | ||
| Algeria Albania Argentina Austria Azerbaidjan Bahrain Belarus Belize Belgium Burkina Faso Bolivia Bosnia Bulgaria Brazil Canada Chile Columbia Costa Rica Czech Republic Denmark Ecuador Estonia Ethiopia Egypt El Salvador France Georgia Germany Ghana Guatemala |
Greece Honduras Hungary Ireland India Iran Iraq Jamaica Japan Jordan Kuwait Latvia Lebanon Lesotho Libya Macedonia Malawi Mauritius Mali Mexico Moldova Morocco Mozambique Namibia Nepal New Zealand Nicaragua Norway Oman Palestine Panama |
Peru Philippines Poland Romania Russia Senegal Serbia and Montenegro Slovenia Solomon Islands South Africa Sudan Suriname Sweden Syria Tanzania The Netherlands Trinidad and Tobago Uganda United Arab Emirates United Kingdom United States of America Thailand Tunisia Yemin Zambia Zimbabwe |