Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 1 The opinions expressed are those of the authors and editors and do not necessarily reflect the policies or views of UNICEF.
Front cover photo: © UNICEF/HQ05-1787/Giacomo Pirozzi
Design and Layout: Gerber Creative, Denmark
© 2007 The United Nations Children’s Fund (UNICEF)
ISBN: 978-88-89129-60-9 ISSN: 1028-3528 Innocenti Digest No. 13
Promoting the Rights of Children with Disabilities Acknowledgements
The UNICEF Innocenti Research Centre in Florence, The Innocenti Research Centre is grateful to the Italy, was established in 1988 to strengthen the UNICEF Programme Division, to UNICEF country research capability of the United Nations Children’s and regional offices, and to the United Nations Fund and to support its advocacy for children Division of Economic and Social Affairs and the worldwide. The Centre (formally known as the World Health Organization, for their inputs and International Child Development Centre) helps to support in this cooperative undertaking. identify and research current and future areas of UNICEF Innocenti Research Centre gratefully UNICEF’s work. Its prime objectives are to improve acknowledges the support provided to international understanding of issues relating to the Centre by the Government of Italy and children’s rights and to help facilitate the full imple- specifically for this project by the Governments mentation of the United Nations Convention on the of Sweden and Switzerland. Rights of the Child in developing and industrialized countries. Innocenti Digests are produced by the Previous Innocenti Digest titles are: Centre to provide reliable and accessible informa- • Ombudswork for Children tion on specific child rights issues. • Children and Violence • Juvenile Justice The underlying research for this issue of the • Intercountry Adoption Innocenti Digest was carried out by Michael Miller. • Child Domestic Work It has been updated and completed by Peter Mittler • Domestic Violence against Women and Girls and David Parker. The Digest was prepared under • Early Marriage: Child Spouses the guidance of the Innocenti Research Centre’s • Independent Institutions Protecting Director, Marta Santos Pais. Children’s Rights • Birth Registration: Right from the start Thanks are extended to Nora Groce, Gulbadan • Poverty and Exclusion among Urban Children Habibi and Lena Saleh for their expert guidance • Ensuring the Rights of Indigenous Children and perspectives. This publication benefited • Changing a Harmful Social Convention: from the contributions of participants in an initial Female genital mutilation/cutting consultation held at UNICEF IRC including Tony Booth, Susie Burrows, Nigel Cantwell, Sunil For further information and to download or to Deepak, Gaspar Fajth, Maryam Farzanegan, order these and other publications, please visit Garren Lumpkin, Maura Marchegiani, Penny the website at
Research support was provided by Shaista Correspondence should be addressed to: Ahmed, Adam Eckstein, Virginia Dalla Pozza, UNICEF Innocenti Research Centre Monica Della Croce, Sarah Enright and Georg Piazza SS. Annunziata, 12 Stahl. Administrative support was provided by 50122 Florence, Italy Claire Akehurst. The IRC Communication and Tel: (39) 055 20 330 Partnership Unit is thanked for providing editorial Fax: (39) 055 2033 220 and production support for the document. Email: florence@unicef.org Website: www.unicef-irc.org
ii Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 CONTENTS
Executive Summary ...... iv 6 Foundations for inclusion ...... 22 Editorial ...... vi Working with families ...... 22 Box 6.1: The Portage Model 23 1 Introduction 1 Box 6.2: Parent advocacy in Newham, London . . . . . 24 Promoting inclusion 1 Working with communities ...... 24 Scope of this Digest ...... 1 Box 6.3: WHO programme on Box 1.1: Disability terminology 2 disability and rehabilitation ...... 25 Community-based rehabilitation 26 2 How many children Box 6.4: Using local resources to with disabilities? 3 produce low-cost aids in Mexico and Box 2.1: Changing levels of disability in the Philippines ...... 26 CEE/CIS and the Baltic States ...... 4 From institutions to communities ...... 27 Towards inclusive schools and learning 3 Disability and inclusion ...... 5 environments ...... 27 The ’social model’ of disability ...... 5 Box 6.5: Bulgaria’s National Social Disability and poverty ...... 5 Rehabilitation Centre ...... 28 Box 6.6: Inclusive schooling in Italy: 4 International standards A pioneering approach ...... 29 and mechanisms ...... 7 Box 6.7: Uganda: An example of Convention on the Rights of the Child 7 inclusive planning 29 Box 4.1: Human rights instruments and Training teachers for inclusive education ...... 30 high-level decisions reinforcing the rights Box 6.8: Empowering teachers in Lesotho ...... 30 of persons with disabilities 8 Involving children with disabilities ...... 31 Other international human rights instruments and decisions ...... 9 7 Ensuring a supportive UN Standard Rules on the Equalization of environment ...... 32 Opportunities for Persons with Disabilities ...... 9 Local governance ...... 32 Box 4.2: Work of the UN Special Rapporteur Laws and policies ...... 32 on Disability 10 Box 7.1: Nicaragua: Coordination promotes Convention on the Rights of Persons the rights of children with disabilities 33 with Disabilities ...... 10 Box 7.2: Raising disability awareness Article 7: Children with disabilities 11 in the Maldives ...... 34 Article 24: Education ...... 11 “Nothing about us without us” ...... 34 Article 32: International cooperation ...... 11 Changing attitudes ...... 34 Monitoring implementation of the Convention 12 Budget allocations and priorities ...... 34 Implementation at national level: Next steps ...... 12 Box 7.3: Monitoring human rights Millennium Development Goals ...... 13 violations and abuse against persons Box 4.3: Millennium Development Goals 13 with disabilities ...... 35 Monitoring ...... 35 5 Human rights of children with International and regional partnerships ...... 35 disabilities today ...... 14 Global review of the rights of children 8 Conclusions ...... 38 with disabilities by the UN Committee on the Rights of the Child ...... 14 Notes ...... 39 Confronting discrimination ...... 14 Links ...... 44 Box 5.1: Disability and gender ...... 15 Convention on the Rights of Access to health, rehabilitation and Persons with Disabilities 51 welfare services ...... 15 Optional Protocol to the Convention on Access to education ...... 16 the Rights of Persons with Disabilities ...... 66 Institutionalization and lack of appropriate care . . . . 17 Protection from violence, exploitation and abuse . . . 19 Disability in conflict and emergency situations 19 Box 5.2: Landmines cause disability in Angola . . . . . 20 Participation and access to opportunities ...... 20
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities iii EXECUTIVE SUMMARY
Children with disabilities and their families constantly with disabilities and provides a framework for ensur- experience barriers to the enjoyment of their basic ing that those rights are realized. human rights and to their inclusion in society. Their abilities are overlooked, their capacities are underesti- Understanding barriers to inclusion mated and their needs are given low priority. Yet, the barriers they face are more frequently as a result of The social model of disability acknowledges that ob- the environment in which they live than as a result of stacles to participation in society and its institutions their impairment. reside in the environment rather than in the individu- al, and that such barriers can and must be prevented, While the situation for these children is changing for reduced or eliminated. the better, there are still severe gaps. On the positive side, there has been a gathering global momentum Environmental obstacles come in many guises and over the past two decades, originating with persons are found at all levels of society. They are reflected with disabilities and increasingly supported by civil in policies and regulations created by governments. society and governments. In many countries, small, Such obstacles may be physical – for example barri- local groups have joined forces to create regional or ers in public buildings, transportation and recreational national organizations that have lobbied for reform facilities. They may also be attitudinal – widespread and changes to legislation. As a result, one by one underestimation of the abilities and potential of chil- the barriers to the participation of persons with dis- dren with disabilities creates a vicious cycle of under- abilities as full members of their communities are expectation, under-achievement and low priority in starting to fall. the allocation of resources.
Progress has varied, however, both between and Poverty is a pervasive barrier to participation world- within countries. Many countries have not enacted wide, and is both a cause and a consequence of protective legislation at all, resulting in a continued disability. Families living in poverty are much more violation of the rights of persons with disabilities. vulnerable to sickness and infection, especially in infancy and early childhood. They are also less likely The Innocenti Digest on Promoting the Rights of to receive adequate health care or to be able to pay Children with Disabilities attempts to provide a for basic medicines or school fees. The costs of car- global perspective on the situation of the some 200 ing for a child with a disability create further hard- million children with disabilities. The Digest is based ship for a family, particularly for mothers who are on reports from countries across regions and from often prevented from working and contributing to a wide range of sources. These include accounts by family income. persons with disabilities, their families and members of their communities, professionals, volunteers and Needed actions non-governmental organizations, as well as country reports submitted by Member States to the United The articles of the Convention on the Rights of Per- Nations, including to human rights treaty bodies sons with Disabilities spell out the specific areas that responsible for monitoring the implementation of need to be addressed, as well implementation and international human rights treaties. monitoring mechanisms. These are complementary to the recommendations issued by the Committee on This Digest focuses particularly on the Convention on the Rights of the Child to governments. the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD). The A major task for international agencies and their latter instrument was signed by an unprecedented national partners is to ensure that persons with dis- 81 countries on opening day, 30 March 2007. As of abilities are automatically but explicitly included in the 15 August 2007, 101 countries had signed the CRPD initial objectives, targets and monitoring indicators of and 4 had ratified it. For entry into force, it is neces- all development programmes, including with those sary that the Convention receive 20 ratifications. The framed by the Millennium Agenda. Disabilities Convention offers a unique opportunity for every country and every community to reexam- At national level a number of specific actions are ine its laws and institutions and to promote changes called for by relevant UN standards. The most impor- necessary to ensure that persons with disabilities tant of these actions are to: are guaranteed the same rights as all other persons. It expresses basic human rights in a manner that ad- 1. In partnership with organizations of persons with dresses the special needs and situation of persons disabilities undertake a comprehensive review iv Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 of all legislation in order to ensure its conformity with disabilities should be supported in making with these standards, in particular the inclusion of their voices heard. children and adults with disabilities. All relevant legislation and regulations should include a prohi- Such actions taken by governments will promote and bition of discrimination on grounds of disability. facilitate the efforts by families and communities in 2. Provide for effective remedies in case of viola- support of children with disabilities. tions of the rights of children with disabilities and ensure that these remedies are accessible to all Conclusions children, families and caregivers. 3. Develop a national plan of action that integrates In countries the world over children with disabilities the relevant provisions of all applicable interna- and their families continue to face discrimination and tional instruments. Such plans should specify are not yet fully able to enjoy their basic human rights. measurable and timebound targets as well as The inclusion of children with disabilities is a matter of evaluation indicators, and should be resourced social justice and an essential investment in the future accordingly. of society. It is not based on charity or goodwill but is 4. Create a focal point for disability in each relevant an integral element of the expression and realization department, as well as a high-level multisectoral of universal human rights. Coordinating Committee, with members drawn from relevant ministries and organizations of per- The last two decades have witnessed a gathering sons with disabilities. This committee should be global momentum for change. Many countries have empowered to initiate proposals, suggest policies already begun to reform their laws and structures and and monitor progress. to remove barriers to the participation of persons with 5. Develop independent monitoring mechanisms, disabilities as full members of their communities. such as an Ombudsperson or Children’s Commis- sioner, and ensure that children and families are The Convention on the Rights of Persons with Disabili- aware of and fully supported in gaining access to ties, building upon the existing provisions of the Con- such mechanisms. vention on the Rights of the Child, opens a new era 6. Make concerted efforts to ensure that the neces- in securing the rights of children with disabilities and sary resources are allocated to and for children their families. Together with the Millennium Agenda with disabilities and their families. This includes and other international initiatives, these international free primary and secondary education in acces- standards lay the foundation for each country and com- sible buildings, training of teachers and other pro- munity to undertake a fundamental review of the situ- fessionals, financial support and social security. ation of children and adults with disabilities and to take Each child should be provided with appropriate specific steps to promote their inclusion in society. individual support, including assistive devices, sign language, Braille materials and a differenti- ated and accessible curriculum. 7. Establish programmes for the deinstitutionaliza- tion of children with disabilities, placing them with their families or with foster families who should be assisted with professional and financial sup- port. National standards of care and appropriate training should be in place and rigorously moni- tored to safeguard the rights of those children that remain in institutions. 8. Conduct awareness-raising and educational cam- paigns for the public, as well as specific groups of professionals, with the aim of preventing and addressing the de facto discrimination of children with disabilities. 9. Implement a system of community services and support for children with disabilities. 10. Ensure that organizations of persons with disabili- ties are consulted in relevant planning and policy making, and are duly represented and financially supported in extending their activities. Children
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities v Editorial
The rights of all disabled people, including those for early, primary and secondary education, or of children, have been reiterated and given a new life-skills and vocational training, or both, that are impetus with the Convention on the Rights of available to other children. They either have no voice Persons with Disabilities, which was signed on or their views are discounted. Although they are opening day, 30 March 2007, by the representatives invariably more vulnerable to abuse and violence, of an unprecedented 81 countries. This follows an their testi-mony is often ignored or dismissed. unequivocal statement made by Heads of State In this way, their isolation is perpetuated as they and Government, adopted by the United Nations prepare for adult life. General Assembly following the May 2002 Special Session on Children: Yet there are changes for the better. Much has been accomplished by governments and their Each girl and boy is born free and equal in dignity partners working at all levels of society. Increasing and rights; therefore, all forms of discrimination numbers of children who would have previously affecting children must end.... We will take all been sent to segregated schools or even been measures to ensure the full and equal enjoyment denied an education altogether now attend regular of all human rights and fundamental freedoms, classes at their local school and are accepted as including equal access to health, education and members of their local community. Achieving recreational services, by children with disabilities the full participation in society of children with and children with special needs, to ensure the disabilities is an objective of the global disability recognition of their dignity, to promote their self- rights movement, a powerful initiative by persons reliance, and to facilitate their active participation with disabilities to claim their basic human rights. in the community.1 This movement is gaining momentum and has recorded impressive achievements. Disabled The daily reality for most children with a disability persons’ organizations have successfully promoted is that they are often condemned to a ’poor start in education reforms in many countries, and they life’ and deprived of opportunities to develop to their have been recognized as a major force behind the full potential and to participate in society. They are process leading to the Convention on the Rights of routinely denied access to the same opportunities Persons with Disabilities.
vi Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 While there are grounds for optimism, we are still far active participants in the local community and society. from seeing all the world’s 200 million children with It is a means for raising children’s awareness of their disabilities enjoying effective and equitable access to rights and overcoming prejudice and discrimination. basic social services and meaningful participation in Through education children acquire the skills neces- society. For example, around 90 per cent of children sary to reach their full potential, both as individuals with disabilities in developing countries do not and citizens. Education offers one of the most effec- attend school. tive means to break the cycle of poverty that all too often overtakes children with disabilities and their Society must adapt its structures to ensure that all families. Education can also prepare other children children, irrespective of age, gender and disability, and the surrounding community to promote inclusion can enjoy the human rights that are inherent to their and to be more receptive to and supportive of chil- human dignity without discrimination of any kind. In- dren with disabilities. ternational human rights standards, including the Con- vention on the Rights of the Child, the UN Standard Disability cannot be considered in isolation. It cuts Rules on the Equalization of Opportunities for Persons across all aspects of a child’s life and can have very with Disabilities and the Convention on the Rights of different implications at different stages in a child’s Persons with Disabilities, all point the way towards life cycle. Many of the initiatives to promote the overcoming discrimination and recognizing the right rights of children with disabilities overlap with those to full participation of children with disabilities – in the for other excluded groups. This Innocenti Digest home and community, in school, health services, rec- aims, therefore, to encourage actors at all levels − reation activities and in all other aspects of life. from the local to the international − to include chil- dren with disabilities in all their programmes and This Innocenti Digest addresses inclusion in the wid- projects and to ensure that no child is left out. est societal sense and gives particular attention to inclusive strategies for all levels of education. Early The information presented here makes it abundantly childhood development interventions and informal clear that real progress is possible in all countries, education play a critical role in promoting children’s including the poorest, and that obstacles seeming to development and in preparing them for adult life as be insurmountable can be overcome.
Marta Santos Pais Director UNICEF Innocenti Research Centre
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities vii 1 introduCTION
The Convention on the Rights of the Child (CRC) of the Child, which requires that the child’s education recognizes the human rights of all children, including be directed to the development of their personality, those with disabilities. The Convention contains a talents and mental and physical abilities to their fullest specific article recognizing and promoting the rights potential; to the preparation of the child for responsi- of children with disabilities. Along with the CRC, the ble life in a free society, in the spirit of understanding Convention on the Rights of Persons with Disabilities and tolerance. (CRPD), adopted by the United Nations General Assembly in December 2006, provides a powerful Inclusion is a process that involves all children, new impetus to promote the human rights of all not just a number of ’special’ children. It gives children with disabilities. non-disabled children the experience of growing up in an environment where diversity is the norm In spite of the almost universal ratification of the rather than the exception. It is when the education Convention on the Rights of the Child, and the social system fails to provide for and accommodate and political mobilization that led to adoption of the this diversity that difficulties arise, leading to Convention on the Rights of Persons with Disabilities, marginalization and exclusion. disabled children and their families continue to be confronted with daily challenges that compromise the Inclusion is not the same as ’integration’, which im- enjoyment of their rights. Discrimination and exclu- plies bringing children with disabilities into a ’normal’ sion related to disabilities occur in all countries, in all mainstream or helping them to adapt to ’normal’ sectors of society and across all economic, political, standards. For example, in the context of schooling, religious and cultural settings. integration means the placement of children with dis- abilities in regular schools without necessarily making Promoting inclusion any adjustments to school organization or teaching methods. Inclusion, on the other hand, requires that Human rights have provided both the inspiration and schools adapt and provide the needed support to en- the foundation for the movement towards inclusion sure that all children can work and learn together. for children with disabilities. Inclusion requires the recognition of all children as full members of society Scope of this Digest and the respect of all of their rights, regardless of age, gender, ethnicity, language, poverty or The enjoyment of human rights by children with dis- impairment. Inclusion involves the removal of barriers abilities can be fully realized only in an inclusive soci- that might prevent the enjoyment of these rights, and ety, that is, a society in which there are no barriers to requires the creation of appropriate supportive and a child’s full participation, and in which all children’s protective environments. abilities, skills and potential are given full expression. The Digest reviews concrete initiatives and strate- The UN Educational, Scientific and Cultural Organization gies for advancing the social inclusion of children (UNESCO) states that the inclusion of children who with disabilities. These initiatives are by no means would otherwise be perceived as ’different’ means confined to income-rich countries. Indeed, some of “changing the attitudes and practices of individuals, the poorest countries in the world are now leading organisations and associations so that they can fully the way through a combination of political will, part- and equally participate in and contribute to the life nership with local communities and, above all, the of their community and culture. An inclusive society involvement of children and adults with disabilities in is one in which difference is respected and valued, decision-making processes. and where discrimination and prejudice are actively combated in policies and practices.” The World This Digest is intended to help raise the profile Conference on Special Needs Education, organized of childhood disability and to give impetus to the by UNESCO and held in Salamanca, Spain, in 1994, challenge of ensuring that children with disabilities recommended that inclusive education should be the are fully included in efforts to promote the human norm.2 This has now been reaffirmed in the new Con- rights of all children. It examines the situation of vention on the Rights of Persons with Disabilities. children with disabilities from a global perspective, considering countries and societies with widely dif- In the context of education, inclusion means the fering levels of economic development and service creation of barrier-free and child-focused learning provision, and a variety of sociocultural realities environments, including for the early years. It means that influence attitudes towards persons with dis- providing appropriate supports to ensure that all abilities. It seeks to demonstrate that the inclusive children receive education in non-segregated local policies and practices required to promote the facilities and settings, whether formal or informal. It is enjoyment of the rights of these children are both framed by article 29 of the Convention on the Rights feasible and practical.
1 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 © UNICEF/HQ95-0451/David Barbour
Box 1.1 Disability terminology
Language is powerful and the choice of words used Under the International Classification of can either perpetuate social exclusion or promote Functioning, Disability and Health (ICF) established positive values. Accordingly, the term ’children by the World Health Organization (WHO) in 2001, with disabilities’ rather than ’disabled children’ is disability is conceived as the outcome of the employed in this Digest to emphasize children’s interaction between impairments and negative individuality rather than their condition. environmental impacts.ii The World Health Organization emphasizes that most people will The term ’impairment’ is used to refer to the loss or experience some degree of disability at some point limitation of physical, mental or sensory function in their lives. Accordingly, the ICF classification on a long-term or permanent basis. ’Disability’, on focuses on a child’s abilities and strengths and not the other hand, is used to describe the condition just impairments and limitations. It also grades whereby physical and/or social barriers prevent a functioning on a scale from no impairment to person with an impairment from taking part in the complete impairment. By shifting the focus from normal life of the community on an equal footing cause to impact, ICF places all health conditions on with others. an equal footing.
The Convention on the Rights of Persons with Dis- Sources: i abilities states: United Nations, Convention on the Rights of Persons with Disabilities, United Nations, New York, 2006. See
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 2 2 how MANY CHILDREN with DISABILITIES?
It is estimated that, overall, between 500 and 650 on a working approximation giving a minimum million people worldwide live with a significant benchmark of 2.5 per cent of children aged 0-14 impairment. According to the World Health with self-evident moderate to severe levels of Organization (WHO), around 10 per cent of the sensory, physical and intellectual impairments. world’s children and young people, some 200 An additional 8 per cent can be expected to have million, have a sensory, intellectual or mental health learning or behavioural difficulties, or both. impairment. Around 80 per cent of them live in developing countries.3 Statistics such as these These estimates were found to be useful in the demonstrate that to be born with or acquire an detailed analysis of statistics on incidence and impairment is far from unusual or abnormal. prevalence of childhood disability in the UNICEF study on Children and Disability in Transition The reported incidence and prevalence of in CEE/CIS and Baltic States.4 They are based on impairment in the population vary significantly from research and data gathered over years in countries one country to another. Specialists, however, agree with the highest human development rankings. © UNICEF/HQ01-0216/Roger LeMoyne
3 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 The minimum benchmark was found particularly disabilities living at home or placed in institutions, helpful in comparing official country rates to this and the number enrolled in regular education or standard since data, if available, are often not com- special education systems or receiving benefits. parable between countries. Countries frequently use different classifications, definitions and thresh- Although accurate and representative data on olds between categories of ’disabled’ and ’non-dis- disability are lacking in many parts of the world, abled’, with the result that a child who is classified international efforts are underway to improve the as, for example, having a mild impairment according quality and availability of data. In 2005 the United to one system might be regarded as not being disa- Nations Statistics Division initiated the systematic bled at all under another. and regular collection of basic statistics on human functioning and disability by introducing a disability Because of the high degree of stigma associated statistics questionnaire to the existing data with disability in certain countries, parents and other collection system.6 family members may be reluctant to report that their child has a disability. Often these children have not even had their birth registered, with the result that they are not known to health, social services Box 2.1 Changing levels of disability in CEE/CIS or schools. In countries where literacy rates are low and the Baltic States and children frequently receive no formal schooling, some learning disabilities (such as dyslexia) may Since the break-up of the Soviet Union, many never be identified. In countries where diagnosis states in the CEE/CIS and Baltic region have is more advanced and the likelihood of survival registered dramatic changes in the recorded is greater or where state benefits are available to number of children with disabilities. The total support persons with disabilities, there is a greater number of children recognized as disabled in of- incentive to register a child’s disability, thus contrib- ficial data across the region tripled, from around uting to a higher recorded prevalence of disability. 500,000 at the onset of transition to 1.5 million in 2002. In Estonia, for example, the number of The issue of identification is also linked to age children aged up to 15 with disabilities who were group: it is not always easy to identify an impair- registered more than doubled from 1,737 in 1989 ment in a very young child (a child under three years to 4,722 in 2001, while in Ukraine the number of old, for example), and many impairments only be- children aged up to 17 with disabilities rose from come evident when a child starts attending school. 93,156 in 1992 to 153,453 in 2001.i In Uzbekistan, Some children – especially in developing countries according to official statistics, there were 33,280 – will also acquire impairments through accidents children registered as having an impairment in and illness, or in conditions of civil disturbance and 1992, while by 1999 this number had increased armed conflict. to 123,750.
With regard to data collection, consistent and ac- These official data do not reflect the situation curate information on children with disabilities fully. There are additional numbers of children helps to make an ’invisible’ population ’visible’ by with disabilities, especially in rural areas, who demonstrating the extent and, indeed, the normality have never been officially registered and who of disability. For example, in Gambia, following the are effectively hidden because of the stigma at- publication of the National Disability Survey of 1998, tached to their condition. recognition of the rights of persons with disabilities increased. The survey, administered to more than A detailed discussion of the background to and 30,000 households by a task force that included possible reasons for these dramatic increases persons with disabilities, was conducted to identify can be found in the UNICEF report Children and the kinds of disabilities affecting children and their Disability in Transition in CEE/CIS and Baltic geographical distribution. The aim was to facilitate States.ii The report attributes these changes to provision of services to children with disabilities.5 a combination of improved identification and reporting techniques, and in some cases, the Data on the types of impairment and the numbers incentive of improved cash benefits for children of children affected can inform service delivery with disabilities living in the community. and improve the provision of the appropriate aids and appliances. It also enables the monitoring of Sources: equality of opportunity and progress towards the i Figures provided from UNICEF Innocenti Research achievement of economic, social, political and Centre, MONEE database. These data were used in support of the report ’Children and Disability in Transi- cultural rights. The most useful statistics are those tion in CEE/CIS and Baltic States’, Innocenti Insight, disaggregated by gender, age, ethnic origin and UNICEF Innocenti Research Centre, Florence, 2005. urban/rural residence. It is important that figures ii Ibid. are further disaggregated in relation to the extent of impairment, the numbers of children with
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 4 3 disability AND inCLUSION
The history of disability is for the most part one of potential of intervention in reducing or alleviating an exclusion, discrimination and stigmatization. Often impairment or in providing rehabilitation or training. segregated from society, persons with disabilities – Provision of technical aids, medical intervention and and in particular, children with disabilities – have been professional support are all important ways of pro- regarded as objects of charity and passive recipients moting empowerment and independence and are an of welfare. This charity-based legacy persists in many integral part of the social model. For example, a sim- countries and affects the perception and treatment ple medical procedure may be all that is required to received by children with disabilities. help a child with eye or ear infections to benefit from classroom learning. The ’social model’ of disability Nevertheless, the medical model (sometimes known The human rights approach to disability has led to a as the ’defect model’) still exerts a disproportion- shift in focus from a child’s limitations arising from ate influence at many levels. For example, teachers impairments, to the barriers within society that and parents sometimes ask questions such as “Can prevent the child from having access to basic social children with Down’s Syndrome attend an ordinary services, developing to the fullest potential and from school?” or “How do you teach children with muscu- enjoying her or his rights. This is the essence of the lar dystrophy?” The answer to the last question was social model of disability. given by a group of 48 children with muscular dystro- phy from France: The emphasis given to equality and non-discrimi- nation in international human rights instruments is Care providers cannot understand that we are all reflected in the social model of disability. This model different, even if we have the same condition, the rejects the long-established idea that obstacles to the same disability. What we want to say to all adults participation of disabled people arise primarily from who take care of us is that we are 48 different their impairment and focuses instead on environmen- personalities. There is no personality type known tal barriers. These include: as muscular dystrophy.7
• prevailing attitudes and preconceptions, leading This quotation emphasizes that the rights, needs and to underestimation; voice of the individual child are fundamental. It is this • the policies, practices and procedures of local principle that lies at the heart of the Convention on and national government; the Rights of the Child and is reflected as well in the • the structure of health, welfare and education Convention on the Rights of Persons with Disabilities. systems; • lack of access to buildings, transport and to the Disability and poverty whole range of community resources available to the rest of the population; The World Bank has estimated that persons with • the impact of poverty and deprivation on the disabilities account for up to one in five of the world’s community as a whole and more specifically on poorest people, that is, those who live on less persons with disabilities and their families. than one dollar a day and who lack access to basic necessities such as food, clean water, clothing and A great deal can be done to remove or reduce the shelter.8 These figures have been brought to life in barriers faced by children and adults with disabilities. a recent report from Inclusion International which For persons with disabilities, this is both a liberating documents the poverty and exclusion experienced and an empowering view, one that emphasizes the daily by people with intellectual disabilities and their positive contribution that they themselves can make families in all regions of the world, but which also in removing the barriers to their participation. At the records many examples of how these obstacles are same time, the social model emphasizes the role of beginning to be overcome.9 government and civil society in removing the obsta- cles faced by citizens with disabilities in becoming ac- Poverty is both a cause and a consequence of dis- tive participants in the various communities in which ability. Correlates of poverty, such as inadequate they live, learn and work. medical care and unsafe environments, significantly contribute to the incidence and impact of disability, Emphasizing the social construction of disability in and complicate efforts for prevention and response. no way implies rejecting medical and professional By the same measure, many of the factors contribut- services and supports. Nor does it mean denying the ing to high levels of impairment among children are
5 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 © UUNICEF/HQ06-1260/Azhar Mahmood
potentially preventable, thus offering the opportunity address disability concerns in a systematic manner.12 to reduce the levels of disability as well as of poverty. This fundamental principle of inclusive planning was Such factors include malnutrition and micronutrient recognized by former President of the World Bank deficiencies, preventable diseases such as measles, James Wolfensohn: lack of sanitation and clean water, as well as violence, abuse and exploitation, including through labour. Lack If development is about bringing excluded peo- of access to all levels of education and low levels ple into society, then disabled people belong in of family support in any community are also closely schools, legislatures, at work, on buses, at the linked to both poverty and disability. theatre and everywhere else that those who are not disabled take for granted. Unless disabled Significant progress is being made in eliminating ma- people are brought into the development main- jor causes of impairment such as iodine deficiency stream, it will be impossible to cut poverty in half and lack of access to safe water. On the other hand, by 2015 or to give every girl and boy the chance the last decade has seen a persistence or rise in to achieve a primary education by the same date- other factors that have contributed to the incidence goals agreed by more than 180 world leaders at of impairments, including HIV/AIDS, environmental the United Nations Millennium Summit in Sep- pollution, accidents and drug abuse.10 War and civil tember 2000.13 strife are also major causes of impairment among children, largely affecting countries in the developing The World Bank has promoted a broad and inclusive world. UNICEF has estimated that between 1990 and approach to disability issues, including through the 2001, 2 million children around the world were killed appointment of an experienced disability adviser and and as many as 6 million disabled by armed conflict.11 the recruitment of disability experts. A guidance note The prevention of disability caused by landmines and released in 2007, which includes consideration of unexploded ordnance needs to be given higher prior- issues relevant to children and youth, has the aim ity in the regions most affected. to “assist Bank projects in better incorporating the needs and concerns of people with disabilities, as The additional burden placed on families with mem- well as integrating a disability perspective into ongo- bers, including children, with disabilities, deepens the ing sector and thematic work programs, and to adopt impact of economic poverty and may further perpetu- an integrated and inclusive approach to disability.”14 ate discriminatory attitudes towards these groups. Similar initiatives, developed with non-governmental organizations (NGOs), are also being pursued by the In the light of the inextricable link between poverty European Union.15 and disability, effective action to reduce poverty must
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 6 4 INTERNATIONAL standards AND meCHANISMS
Over four decades, the United Nations has made a a ’problem’ and, in doing so, maintain or reinforce strong commitment to the human rights of persons mechanisms of discrimination. with disabilities.16 This commitment has been re- flected in major human rights instruments as well as Certain children require additional or different forms within specific measures and initiatives, which began of support in order to enjoy their rights. For instance, with the 1971 Declaration on the Rights of Persons a child with a visual impairment has the same right with Mental Retardation and now has culminated in to education as all children, but in order to enjoy this the 2006 Convention on the Rights of Persons with right and to ensure her or his participation, the child Disabilities. Other examples of disability-focused ini- may require enlarged print, Braille books or other tiatives include the International Decades of Disabled forms of assistance. Persons, the 1993 Standard Rules on the Equalization of Opportunities for Persons with Disabilities and the Article 23 of the CRC refers to the obligations of 1994 Salamanca Statement and Framework for Ac- States parties and recognizes that a child with mental tion for Special Needs Education (see box 4.1 for a or physical disabilities is entitled to enjoy a full and more complete list). decent life, in conditions that ensure dignity, promote self-reliance and facilitate the child’s active participa- Convention on the Rights of the Child tion in the community:
The 1989 Convention on the Rights of the Child i) States parties recognize that a mentally or physi- (CRC) is the first binding instrument in international cally disabled child should enjoy a full and decent law to deal comprehensively with the human rights life, in conditions which ensure dignity, promote of children, and is notable for the inclusion of an arti- self-reliance and facilitate the child’s active partici- cle specifically concerned with the rights of children pation in the community. with disabilities. The implementation of the CRC is ii) States parties recognize the right of the disabled monitored and promoted at the international level by children to special care and shall encourage and the Committee on the Rights of the Child. ensure the extension, subject to available resourc- es, to the eligible child and those responsible for The CRC identifies four general principles that his or her care, of assistance…appropriate to the provide the foundation for the realization of all child’s condition…. other rights: iii) …assistance extended…shall be provided free of charge, whenever possible… and shall be • non-discrimination; designed to ensure that the disabled child has • the best interests of the child; effective access to and receives education, train- • survival and development; ing, health care services, rehabilitation services, • respect for the views of the child. preparation for employment and recreation op- portunities in a manner conducive to the child’s The principle of non-discrimination is reflected achieving the fullest possible social integration in article 2 of the CRC that expressly prohibits and individual development, including his or her discrimination on the grounds of disability: cultural and spiritual development. iv) States parties shall promote…the exchange of States parties shall respect and ensure the rights appropriate information in the field of preventive set forth in the present Convention to each child health care and of medical, psychological and ...without discrimination of any kind, irrespective functional treatment of disabled children…. In this of the child’s...disability...or other status. regard, particular account shall be taken of the needs of developing countries. This principle is motivated by the recognition that segregated or separate facilities for education, health This special article on children with disabilities care, recreation and all other aspects of human life is included “without prejudice to” the general on the basis of disability can create and consolidate applicability of the principles and provisions of the exclusion. These factors often perpetuate the CRC to the situation of children with disabilities. negative perception of a child with a disability as The article adds force to the other provisions of
7 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Box 4.1 Human rights instruments and high-level decisions reinforcing the rights of persons with disabilities
Complementing the Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and Political Rights and the Convention on the Rights of the Child, the following texts and international events specifically address the rights of persons with disabilities:
1971 Declaration on the Rights of Mentally Retarded Persons stipulates that a person with an intel- lectual impairment is accorded the same rights as any other person 1975 Declaration on the Rights of Disabled Persons proclaims the equal civil and political rights of all disabled persons, and sets standards for equal treatment and access to services 1981 International Year of Disabled Persons (United Nations) 1982 World Programme of Action concerning Disabled Persons 1983−1992 International Decade of Disabled Persons (United Nations) 1990 World Declaration on Education for All and Framework for Action to Meet Basic Learning Needs adopted at the World Conference on Education for All, in Jomtien, Thailand in March 1990, promotes “equal access to education to every category of disabled persons as an integral part of the education system” 1993 United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabili- ties provide detailed guidelines for policy development and implementation 1993−2002 Asian and Pacific Decade of Disabled Persons 1994 Salamanca Statement and the Framework for Action on Special Needs Education. Adopted by the UNESCO World Conference on Special Needs Education: Access and Quality, Salamanca, Spain, 7-10 June 1994. Adopted by 92 governments and over 25 international organizations, putting the principle of inclusion on the educational agenda worldwide 1995 World Summit for Social Development, Copenhagen Declaration and Programme of Action calls upon governments to ensure equal educational opportunities at all levels for disabled chil- dren, youth and adults, in integrated settings 1998 Human Rights of Persons with Disabilities, Commission on Human Rights Resolution 1998/31 2000 World Education Forum, Dakar, Statement and Framework for Action established attainable and affordable educational goals, including the goals of ensuring that by 2015 all children of primary age have better access to complete free schooling of an acceptable quality, that gender disparities in schooling are eliminated and that all aspects of educational quality are improved 2000 Human Rights of Persons with Disabilities, Commission on Human Rights Resolution 2000/51 2001−2009 African Decade of Disabled Persons 2002 UN General Assembly Resolution on The Rights of the Child, following the World Summit on Children, calls upon States to take all necessary measures to ensure the full and equal enjoy- ment of all human rights and fundamental freedoms by children with disabilities, and to de- velop and enforce legislation against their discrimination, so as to ensure dignity, promote self-reliance and facilitate the child’s active participation in the community, including effective access to educational and health services 2002 ’A World Fit for Children’, outcome document of the UN General Assembly Special Session on Children makes clear reference to the rights of children with disabilities, especially regarding protection from discrimination, full access to services, and access to proper treatment and care, as well as the promotion of family-based care and appropriate support systems for families 2003−2012 Second Asian and Pacific Decade of Disabled Persons 2004−2013 Arab Decade of Disabled Persons 2006 UN Convention on the Rights of Persons with Disabilities 2006−2016 Inter-American Decade of Disabled Persons
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 8 the CRC, including freedom from discrimination, UN Standard Rules on the Equalization of respect for the dignity of the child and the cultivation Opportunities for Persons with Disabilities of her or his potential to assume a responsible and independent life in society. They may be seen to be The CRC provides a binding implementation frame- particularly relevant to the situation of children with work with implications for law, policy and practice disabilities in the following provisions: with respect to children with disabilities. The Stand- ard Rules on the Equalization of Opportunities for • The child’s right not to be separated from his or Persons with Disabilities, adopted by the UN General her family (article 9). Assembly in 1993, provides detailed guidance on • Services and assistance to support parents in what should be done and how to do it.19 The Com- their child-rearing responsibilities (article 18). mittee on the Rights of the Child recommended that • Protection from injury, neglect and any form of the two documents be used as complementary tools violence (article 19). in promoting the rights of children with disabilities.20 • Protection of children deprived of a family Around the world, these Rules have had a major environment (article 20). influence on the development of disability legisla- • Refugee children (article 22). tion, the level and provision of services for persons • Periodic review of treatment (article 25). with disabilities and, above all, on attitudes towards • The child’s right to free and compulsory primary disability issues. The simplicity of the Rules enables education, to secondary and vocational education them to be used as a practical tool by those involved and the prevention of drop out (article 28). in developing disability legislation and policy.21 • Children belonging to minorities and indigenous people (article 30). Unlike the CRC, which is legally binding for all States • Protection from work that interferes with that have ratified or acceded to it, the Standard Rules education (article 32). express a political commitment on the part of States • Protection from abuse (article 33). to adapt society to individuals with functional impair- • Protection from sexual exploitation (article 34). ments. The Rules address all aspects of the lives of • Protection from torture or other cruel, inhuman persons with disabilities and indicate how govern- or degrading treatment or punishment, and from ments can make social, political and legal changes deprivation of liberty (article 37). to ensure that persons with disabilities are treated • Right to rehabilitative care for victims of neglect, as full citizens of their country. The Rules cover four exploitation, abuse or degrading treatment main areas: (article 39). 1 Preconditions for equal participation (awareness The implementation of the CRC is monitored at the raising, medical care, rehabilitation, support serv- international level by the Committee on the Rights ices and accessibility). of the Child, which oversees the progress made by 2 Target areas for equal participation (accessibility, States parties in promoting the realization of chil- education, employment, income maintenance dren’s human rights. Reiterating its concern with the and social security, family life and personal integ- rights of children with disabilities, in 2006 the Com- rity, culture, recreation and sports, religion). mittee issued a General Comment on this particular 3 Implementation measures (information and re- topic (see chapter 5 below for discussion of the search, policy-making and planning, legislation, Committee’s comments and policy recommendations economic policies, coordination of work, organi- concerning children with disabilities). zations of disabled persons, personnel training, national monitoring and evaluation of disability Other international human rights instruments programmes in the implementation of the Rules, and decisions technical and economic cooperation and interna- tional cooperation). In addition to the CRC, a number of other important 4 Monitoring mechanisms. The implementation of human rights instruments reinforce the rights of per- the Rules is monitored by the Special Rapporteur sons with disabilities (box 4.1). Of particular note is on Disability (see box 4.2), assisted by a commit- the renewed impetus for recognizing the principle of tee of experts drawn from the main international non-discrimination as a fundamental part of all inter- NGOs concerned with disability. national human rights instruments, thus guaranteeing their relevance to persons with disabilities.17 In October 2006 the Office of the UN Special Rap- porteur on Disability published the results of a Global Disability issues have also been addressed in the con- Survey on the Implementation of the Standard Rules, text of other human rights institutions of the United conducted by the South–North Center for Dialogue Nations, for example, in 2006 in a report by the Spe- and Development, based in Amman, Jordan.22 A cial Rapporteur on the right to education, addressing detailed questionnaire was sent to 191 government steps to fulfil the right to inclusive education.18 bodies in member States and to two organizations representing persons with disabilities in each coun- try; information was received from 114 countries.
9 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Box 4.2 Work of the UN Special Rapporteur Convention on the Rights of Persons on Disability with Disabilities
The United Nations Special Rapporteur on Disa- When proposals for a new disability convention were bility reports yearly to the Commission for Social first raised, it was suggested by some that there was Development. The reports present findings on no need for such a convention because the rights of the promotion and monitoring of the implemen- persons with disabilities were automatically included tation of the Standard Rules on the Equalization in all other conventions, whether or not these includ- of Opportunities for Persons with Disabilities ed disability-specific references. At the same time, and contain recommendations, as requested by organizations of persons with disabilities pressed the the Commission, on their further development. case for a disability-specific convention, noting ex- In carrying out the functions of the position, the amples of their needs being overlooked in the imple- Special Rapporteur establishes a direct dialogue mentation and monitoring of conventions and other with Member States and local non-governmental international initiatives. organizations and experts, seeking their views and comments on any information intended to In November 2001, the General Assembly of the be included in the reports.i United Nations adopted a resolution to establish an ad hoc committee to consider proposals for a Con- In 1994, Bengt Lindqvist was designated by the vention on the Rights of Persons with Disabilities. United Nations Secretary-General as the first The proposed convention aimed to give status, au- Special Rapporteur on Disability. In 1998 and thority and visibility to disability as a human rights 2000, he addressed the UN Commission on Hu- issue in a way that would have been impossible to man Rights concerning disability as a human achieve by any other means.23 rights issue. The Commission responded by adopting two important resolutions − 1998/31 At its concluding session in August 2006, the com- and 2000/51 − in which disability is recognized as mittee adopted the draft of the proposed convention, a human rights concern for the entire UN system. which was subsequently adopted by the UN General Assembly on 13 December 2006, and became open Bengt Lindqvist retired from the position of Spe- for signature by Member States from 30 March 2007. cial Rapporteur at the end of 2002 after serving States, as well as regional integration organizations, three mandates. He was succeeded by Sheikha become parties to the Convention and to its Optional Hessa Khalifa bin Ahmed al-Thani, who worked Protocol either by signing and ratifying the instru- closely with the UN Secretary-General and offi- ments or by acceding to them. Signature conveys cials of the Arab League to facilitate the adoption the intention to take steps towards ratification at the and declaration of the Arab Decade for Persons international level, in the prospect of compliance with with Disabilities (2004−2013) at the summit meet- the respective provisions. More than 80 Member ing of the Arab League in May 2004. Ms. Sheikha States and many NGOs took part in the signing cer- Hessa has also continuously stressed the need emony and the subsequent dialogue on implementa- for accurate statistical data and information on tion. As of 15 August 2007, 101 countries had signed disability, and this led to the worldwide dissemi- the Convention, and 4 countries – Croatia, Hungary, nation of a survey on government action on the Jamaica and Panama – had ratified it. For entry into implementation of the Standard Rules. force, it is necessary that the Convention receive 20 ratifications. Source: i United Nations Enable website, Children themselves, with support of child advo-
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 10 The Convention reflects a ’paradigm shift’ in attitudes are all too frequently overlooked and undervalued. and approaches to persons with disabilities, in the Their right to appropriate support in making their direction of the social model of disability described voices heard is emphasized in both article 7 and above. It represents the culmination of the process article 24. initiated over two decades ago by the United Nations of moving from the treatment of persons with dis- Article 24: Education abilities as ’objects’ of charity, medical treatment and social protection towards viewing persons with dis- A second article of the Convention with particular abilities as ’subjects’ with rights who are capable of implications for children is article 24 on education. claiming those rights and making decisions for their Article 24 reflects a clear commitment to the lives based on their free and informed consent, as principle of inclusive education as a goal. In this well as being active members of society. respect, it advances further the direction established in earlier documents such as the CRC, the Salamanca The General Principles of the Convention (article 3) Statement and Framework and the Standard Rules. are fundamental to all articles of the Convention and to its implementation by member States. They are as Article 24 also addresses the specific needs follows: of children with severe and complex sensory impairments for access to specific supports to a) Respect for the inherent dignity, individual auton- learning such as sign language, Braille and low vision omy including the freedom to make one’s own aids. Other children with disabilities may also need choices, and independence of persons. modifications to the curriculum, to styles of teaching b) Non-discrimination. and to the organization of the classroom. Support c) Full and effective participation and inclusion in to all children with disabilities has to be individually society. tailored and resourced both in terms of time and d) Respect for difference of persons with disabili- staffing. Clearly, parents and the children themselves ties as part of human diversity and humanity. have to be partners in deciding the nature and e) Equality of opportunity. intensity of such support and ways in which it can f) Accessibility. be reduced as both child and teacher become more g) Equality between men and women. confident and competent (see chapter 6 below for h) Respect for the evolving capacities of children further discussion of education). with disabilities and respect for the right of chil- dren with disabilities to preserve their identities. Article 32: International cooperation
All of the provisions in the Convention apply to chil- The Convention has important implications for the dren with disabilities as well as to adults. In recogni- role of international actors, and of the UN system in tion of children’s specific situation, however, several particular. In article 32, the Convention recognizes articles make explicit reference to their rights. The pre- the importance of international cooperation in amble recognizes that children with disabilities have support of national efforts for the realization of full enjoyment of all human rights on an equal basis its purpose and objectives, and stresses that with others. The general principles include respect for cooperation should aim at ensuring that development the evolving capacities of the child and children’s right programmes are inclusive of, and accessible to to preserve their identity. The general obligation re- persons with disabilities. The Convention is also open quires that children with disabilities must be consulted for accession to regional integration organizations. when States parties are developing and implementing In addressing the need for all development legislation and policies. Several other articles specifi- programmes to be inclusive and accessible to cally address the rights of children with disabilities, persons with disabilities, article 32 identifies a range including their right to participation, information, edu- of areas in which international partners are expected cation, family life and freedom from violence. to play a facilitating and supportive role. With the establishment of the Convention, disability will Three articles in particular – articles 7, 24 and 32 – take on a more prominent role in the development merit examination in greater detail. process. In these actions disability must be increasingly addressed within all programmes, not Article 7: Children with disabilities only as a separate item.
Building upon the CRC, the principles summarized Once a country ratifies the Convention, its provisions, in article 7 of the Convention affirm the fundamental and compliance with them, should be reflected rights of all children with disabilities to the entire in elements of its national development agenda, range of human rights inherent to all children. including its poverty reduction strategy and UN Requirements for the best interests of the child Development Assistance Framework. The UN and and for the participation of the children themselves other international actors will in turn be called upon in decision-making are particularly important for by governments and civil society to provide guidance children with disabilities, whose interests and voices and assistance in the implementation process.
11 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Monitoring implementation of the Convention The CRPD process has represented an unprec- edented opportunity for civil society and the non- In order for the Convention to have a positive impact governmental sector. For the first time in history, on the quality of life of persons with disabilities the United Nations General Assembly attributed a and on society as a whole, effective procedures leading role to non-governmental organizations in are required for its implementation at the national the elaboration of an international convention by level. The roles and responsibilities of stakeholders specifically involving them in its working structures. – including member States, persons with disabilities This partnership between organizations of persons and their organizations, UN system entities, with disabilities and development and human rights development partners, and regional entities – in the actors will be maintained throughout the implemen- implementation and monitoring of the Convention tation and monitoring process. need to be clearly established and defined. Implementation at national level: Next steps The Convention sets out reporting obligations at both the national and international levels. Particular priority The guidance contained in the CRPD and the stand- must be given to the actions needed at the national ards of the CRC, together with the conclusions emerg- level. As outlined in article 33 of the Convention, ing from the deliberations of the Committee on the States parties are required to designate focal point(s) Rights of the Child,25 have each generated important within government, and consider the establishment recommendations for next steps in implementation at of a coordination mechanism within government to the national level. The following represents a synthesis facilitate relevant actions. The article also highlights from these two, very usefully convergent sources: the importance of an independent mechanism for monitoring at the national level, and the engagement 1 Undertake a comprehensive review of all legisla- of civil society, especially the involvement and tion in order to ensure consideration to the inclu- participation of persons with disabilities and their sion of children with disabilities. Prohibition of organizations in the process. discrimination on grounds of disability should be included in all legislation. At the international level, the Convention establishes 2 Provide for effective remedies in cases of viola- a treaty monitoring body, the Committee on the tions of the rights of children with disabilities and Rights of Persons with Disabilities (in Geneva), ensure that these are accessible to all children, as well as a Conference of States parties (in families and carers. New York). As is the case for other human rights 3 Develop a national plan for action framed by treaty bodies, the Committee will be made up of the relevant provisions of the CRC and CRPD, independent experts, receiving secretariat support together with the Standard Rules. Action plans from the Office of the High Commissioner for should specify measurable targets, evaluation in- Human Rights. The Committee will consist initially dicators and timetables and should be monitored of 12 members elected by secret ballot from a list accordingly. submitted by States parties. Each ratifying country is 4 Create a focal point for disability in each relevant expected to provide an initial comprehensive report ministry, as well as a high level multi-sectoral to this Committee on progress over a two-year coordinating committee, with members drawn period to implement the Convention, and to report from all relevant ministries and from organiza- subsequently every four years. The Committee will tions of persons with disabilities. This committee also take into account the representations of NGOs should be empowered to be proactive in initiating and members of civil society. The reports of the UN proposals and policies. Committee will be in the public domain and available 5 Develop independent monitoring mechanisms, on the internet. The Optional Protocol to the CRPD such as an ombudsperson or children’s commis- introduces additional procedures to strengthen the sioner, and ensure that children and families are implementation of the Convention and the monitoring fully supported in gaining access to such mecha- role of the Committee.24 nisms. 6 Create an earmarked budget to ensure that funds Within the UN system, each agency involved in the are targeted at agreed areas of need, such as disability field will play a distinctive role. In respect financial support for families, income mainte- of children and women, UNICEF is particularly well nance, professional development and funds to placed to provide support to government and civil promote access to buildings and services. society partners, especially organizations of persons 7 Conduct awareness raising and educational cam- with disabilities, in the promotion of the implemen- paigns targeting the public at large as well as tation and monitoring of the Convention. The UN specific groups of professionals. Division of Economic and Social Affairs (UN-DESA) 8 Have particular regard to the additional vulnerabil- has been called upon to lead the establishment of an ity of girls and women to discrimination. inter-agency group that will support the development of a UN system-wide strategy to advance the imple- These and other recommendations are further dis- mentation of the Convention. cussed and exemplified in chapter 7 below.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 12 Millennium Development Goals Tangible evidence is required that the needs of persons with disabilities are explicitly included We will have time to reach the Millennium Devel- in UN initiatives, including in the light of the new opment Goals – worldwide and in most, or even Convention. all, individual countries – but only if we break with business as usual. Success will require sus- There is a wide basis of agreement on the principles tained action across the entire decade between and values that should inform international as well now and the deadline. It takes time to train the as national programmes for the advancement of teachers, nurses and engineers; to build the the human rights of persons with disabilities. There roads, schools and hospitals; to grow the small is also ample guidance in the UN Standard Rules and large businesses able to create the jobs and on the Equalization of Opportunities for Persons income needed. So we must start now. And we with Disabilities for the translation of principles into must more than double global development as- practice in specific domains such as education, sistance over the next few years. Nothing less health and employment, as well as many examples will help to achieve the Goals.26 of countries and communities in all parts of the world (Kofi A. Annan, United Nations Secretary-General, that have overcome obstacles to the inclusion of 1997−2006) children with disabilities in their local schools and neighbourhoods. The UN has also commissioned a The Millennium Development Goals (MDG) (see detailed toolkit on inclusive planning that includes box 4.3) represent a crucial inclusive framework for specific procedures to ensure the incorporation of a advancing the human rights and the quality of life of disability dimension in all development planning persons with disabilities and their families. and monitoring.30
Despite the omission of specific reference to per- All too often missing, however, is the political sons with disabilities in the 18 targets for 2015 or will to ensure that persons with disabilities are the 48 monitoring indicators of the MDG framework, automatically and explicitly included in development recognition has nonetheless been given to their programmes from the outset, rather than added as needs.27 An international effort is now underway for an afterthought or, as so often happens, overlooked the explicit inclusion of a disability dimension into the and further marginalized. five-year reviews of MDG achievement.28 However, concerns remain over the ability to translate interna- The chapter that follows summarizes evidence for tional goals into reality, as expressed, for example, by the urgency of this challenge and underlines the a disability and development worker in India: importance of making the fullest possible use of the opportunities now available to end the neglect of In the South Asian context, the MDGs look like persons with disabilities in all regions of the world. stars and moon up in the sky. Most of the goals in the past have failed to move beyond mere catchy slogans – Education for All, Health for All, Hunger Free Society are mere slogans. One of the reasons is that these goals still need to come from the heart of local policy makers. Are they really committed? Do they see people as valued human beings rather than mere targets and ben- eficiaries? Absence of political will is the single most important problem. 29 (Indumathi Rao)
Box 4.3 Millennium Development Goals
The Millennium Development Goals (MDGs) form a blueprint agreed to by all the world’s countries and leading development institutions for the year 2015.
1. Eradicate extreme poverty and hunger 2. Achieve universal primary education 3. Promote gender equality and empower women 4. Reduce child mortality 5. Improve maternal health 6. Combat HIV/AIDS, malaria and other diseases 7. Ensure environmental sustainability 8. Develop a global partnership for development.
13 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 5 human RIGHTS OF CHILDREN WITH disabilities TODAY
The daily reality of life for children with disabilities shame or even fear associated with the birth of and their families is frequently one of discrimination a child with a disability. It is reported by Save the and exclusion, in all countries of the world. The dis- Children that where there is a cultural reverence for crimination they endure can be direct, indirect, or a bloodlines, babies born with physical or intellectual combination of the two. Direct discrimination takes impairments are often hidden away or abandoned place when a child with a disability is deliberately because they are considered to be a sign of treated differently from a child without a disability, on impurity.33 Cultural attitudes are also influenced by the basis of his or her impairment. Indirect discrimi- negative or stereotyped depictions of persons with nation occurs when practices or policies that do not disabilities in folklore, books, films or television immediately appear to discriminate against children programmes. However, the experience of many with disabilities actually have a discriminatory impact countries has demonstrated that the existence in practice, resulting in the denial of certain human of deep-seated negative attitudes should not be rights.31 Indirect discrimination may be unintentional, regarded as an insuperable obstacle to progress. but its effects can be no less damaging than those of direct discrimination. Preconceptions or lack of open discussion about disability sometimes results in children with Global review of the rights of children with disabilities being overlooked in the planning and disabilities by the UN Committee on the Rights provision of services. In other cases, the services of the Child put in place are inappropriate, poorly conceived or ill-funded. Even in situations where such barriers The most wide-ranging and authoritative evidence of can be overcome, this means little if children with worldwide discrimination comes from a recent global disabilities are unable to gain physical access to overview of the situation of children with disabilities schools, hospitals, public buildings or recreational conducted by the UN Committee on the Rights areas, or to use public transportation to do so. of the Child, in its General Comment 9 based on analysis of the reports submitted over a long period Furthermore, the marginalization experienced by by many States parties.32 children with disabilities is all too often compound and cumulative. Children may be discriminated In this General Comment the Committee reported against or suffer social exclusion not only because that some recommendations had to be made they have an impairment, but also because of their specifically concerning children with disabilities for gender, or because they belong to other groups the “overwhelming majority” of countries reviewed. that experience discrimination (see box 5.1) such The Committee emphasized that obstacles stemmed as children living in poverty, children who have lost not from the disability itself but from “a combination their parents, children living on the street, or children of social, cultural, attitudinal and physical barriers belonging to religious, ethnic or national minorities. that children with disabilities encounter in their daily lives.” These barriers are reflected in many reports In this latter regard, the situation of Roma children in from countries in all regions of the world and are by Central and Eastern Europe and the Commonwealth no means confined to the poorest countries. of Independent States (the CEE/CIS region) represents a particularly damaging cycle of disability, The report contains clear suggestions for action, discrimination and disadvantage. Available evidence included in the recommendations for action at suggests very high rates of classified disability among national level in chapter 4 above, and discussed the Roma minority. Such a diagnosis may in part further in chapter 7. represent higher rates of impairment as an outcome of entrenched disadvantage, unmet needs and lack of Confronting discrimination information. However, it is likely also to be based in stigma and bias, reflecting the way that aptitudes are Discrimination can manifest itself in various ways: measured according to dominant cultural standards. through cultural prejudices, socio-economic, The perpetuation of disadvantage is further seen legislative or administrative measures, as well as in the observed practice of placing Roma children environments that are inaccessible to persons with in institutions or in special, segregated schools, disabilities. Cultural prejudices often reflect guilt, regardless of their impairment status.34
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 14 Box 5.1 Disability and gender
Countries often report higher rates of disability for they are often entrusted with the responsibility of males than females. The reasons for such disparities caring for persons with disabilities in their family may include higher rates of work-related injuries and thereby unable to seek paid work and to and greater risk-taking behaviour among boys and contribute to the well-being of the family. Similarly, men.i On the other hand, girls and women are often female siblings may be kept at home to look after more exposed to the risk of becoming disabled than the child with disabilities and be prevented from males because of neglect and certain forms of abuse going to school or seeking paid employment. Such and harmful practices, including early marriageii and discrimination against females is found in income-rich female genital mutilation/cutting.iii This being the case, as well as income-poor countries. the higher rates of disability for boys and men may also reflect the lower visibility given to girls, and to Efforts to address the gender dimensions of disability girls with disabilities, in many countries. In the context must proceed in a balanced and equitable manner of such double discrimination, girls and women may that reflects the situation of women and men, girls have limited access to essential services such as as well as boys with disabilities within integrated health care, education and vocational rehabilitation. strategies for all.
In Nepal, for example, it was reported in 1995 Sources: i that the long-term survival rate for boys who had Groce, N., ’An Overview of Young People Living with Disabilities: Their needs and their rights’, UNICEF polio was twice that for girls, despite the fact that Programme Division (Working Paper Series), New York, 1999. males and females have an equal chance of being ii See UNICEF Innocenti Research Centre, ’Early Marriage: affected by the disease.iv In Kathmandu, a serious Child spouses’, Innocenti Digest No. 7, Florence, 2001. underrepresentation of girls receiving treatment at iii See UNICEF Innocenti Research Centre, ’Changing a the Hospital and Rehabilitation Centre for Disabled Harmful Social Convention: Female genital mutilation/ v cutting’, Innocenti Digest No. 12, Florence, 2005. Children was identified as a cause for concern. iv Cited in Groce, N., ’An Overview of Young People Living with Disabilities’, op. cit., p. 2. But gender implications go further than this. Girls and v Boyce, W., et al., ’Physically Disabled Children in Nepal: women who do not have disabilities themselves are A follow-up study’, Asia Pacific Disability Rehabilitation also disproportionately affected by disability because Journal, Vol. 10, No. 1 (2000),
The effect of multiple discriminations is typically Mortality for children with disabilities under five more than merely additive. For example, a family can be as high as 80 per cent in some income- belonging to a minority group that experiences poor countries.35 Children with severe disabilities discrimination is more likely to live in poverty and may not survive childhood because of a lack of consequently have limited access to proper medical basic primary health care facilities. In addition, care. The combination of these factors increases the rehabilitation services are often concentrated in likelihood that a child will both be born with some urban areas and can be very expensive.36 Even the form of impairment and have lower priority in access simplest aids and appliances to reduce the impact to already limited support and services. of a child’s impairment may not be available. Even where services are largely urban based, children with The consequences of disability can be particularly disability will often have to be left by their parents serious for women and girls because they risk being for weeks or months while they receive care – with discriminated against on grounds of their gender profound psychological consequences. as well as of their particular impairment. As a result they may have even more limited access to essential Under article 24 of the CRC, every child has the right services, including health care, education and to enjoy the highest attainable standard of health vocational rehabilitation. and to have access to facilities for rehabilitation and the treatment of illness. Once a child is identified Access to health, rehabilitation and as having an impairment, however, other normative welfare services conditions may be overlooked, including basic health care. In countries where access to basic Of the 200 million children reported living with medical services is generally difficult, it is likely to be disabilities, few of those living in developing significantly more difficult for children and adults with countries have effective access to health and disabilities to obtain proper medical treatment. rehabilitation or support services. For example, they may miss out on vaccinations, or treatment for Many medical decisions made around the globe simple fever or diarrhoea, easily curable illnesses have come to convey that the life of a child with a which can become life-threatening if left untreated. disability is considered to be worth less than that of a child who has no disability. There are documented
15 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 cases of physicians in both income-rich and income- Legislative barriers can be exacerbated by administra- poor countries who have chosen to deny children tive divisions that indirectly perpetuate marginaliza- with disabilities access to essential operations.37 In tion and discriminatory attitudes. Services for children extreme cases, doctors, sometimes backed by the with disabilities are often organized differently than courts, have refused to intervene to save the life of a those for children without disabilities, leading to inef- child with a disability, even when the child’s parents ficiency and confusion for families. In many countries, have sought such intervention.38 Studies have also different phases of education have different funding, suggested that physicians may withhold medical administration and legislative systems, thus creating and rehabilitative services from people with severe bureaucratic barriers. In sectors such as education, impairments because of assumptions that they are health and social work, services for adults may be too severely disabled to benefit. In other respects, organized differently than those for children. As a health care providers may lack awareness of result, after reaching a certain age, young people may underlying causes that have a persistent influence on lose welfare support to which they were entitled or the health and well-being of persons with disabilities. may have to renegotiate this support.43
Yet in other instances, children with disabilities Access to education have been subjected to clinical and pharmacological interventions that would be considered unacceptable The child’s right to education is enshrined in human if carried out on children without disabilities in rights treaties, including articles 28 and 29 of the the same community, with examples including CRC. A critical implication is the requirement for electroshock therapy, excessive medication and primary education to be compulsory and available routine hysterectomies.39 The result in all such free to all; and secondary education to be available instances is that children with disabilities are deprived and accessible to every child, with the provision of of individualized or appropriate care. financial assistance when needed. The CRPD builds upon this principle and makes recommendations The basic and continuing education and training of about access to lifelong learning opportunities. In doctors and other health professionals should always many parts of the world, however, the majority of include up-to-date information on childhood disability. children with disabilities and especially those with This recommendation is reinforced by the CRPD. A moderate, severe and profound impairments, are still number of resources are available to provide basic far from enjoying access to any kind of school, let knowledge and skill development concerning persons alone to regular education. with disabilities for health care workers.40 In many Western countries and throughout Eastern Persons with disabilities and family members have and Central Europe, special schools have played an often played a key role in sharing their experience important part in providing education for children with and have made valued contributions to the training disabilities. Some of these have been residential, of health care professionals. Opportunities should especially in large countries with scattered also be available for paediatricians and other health populations, but many day special schools have been professionals to meet children with disabilities established with pupils living with their families. in community settings, such as play centres and schools, as well as adults with disabilities in colleges In recent decades, however, the role of special schools and workplaces, rather than in hospital clinics. has come under critical scrutiny, the lead being taken Parents across the world have expressed concern by Italy when it closed most of its special schools in that physicians tend to underestimate the potential of the 1970s, relocating the pupils to local schools and children with disabilities to benefit from education and providing individualized support through the recruit- training or to make a positive contribution to society.41 ment of support staff (see box 6.6 on page 29).
Ill-defined policies, objectives and an ambiguous Experience in many countries has shown that position on the part of national governments often many children who would previously have been exclude or fail to ensure the provision of welfare automatically referred to special schools can be services for children with disabilities, across different satisfactorily educated in mainstream schools, given regions of the world. Different definitions of disability support tailored to their individual needs, often and poor coordination between departments of through an individual educational programme. This health, social services and education are reported includes children with intellectual disabilities such in many developed countries and have serious as Down’s syndrome, a number of whom have implications for the extent to which children with confounded expectations by completing secondary disabilities enjoy their rights to support and other education and successfully passing the national services. This also makes it difficult for parents and school-leaving examinations.44 children to determine the benefits to which they are entitled, creating wide variations in the availability Successful inclusive education experiences in numer- and quality of support and services for children and ous countries are also linked to the expansion of early their families.42 intervention programmes – guaranteeing an early
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 16 start for children and families. In addition, important the same basis as those in special schools, and their steps are now being taken to initiate inclusive educa- parents may be asked to pay for the child’s transport tion programmes at the preschool level. to and from school. Similar limitations often apply to the availability of services in children’s early educa- In reviewing the role of special schools in the future, tion. Such restrictive policies have the effect of steer- some countries favouring inclusive education as a ing parents to use special schools when this is not first choice and as a matter of principle have decided necessarily in the best interests of the child. to retain special schools for children whose parents express a strong preference for such schools, and for In income-poor countries, resource shortages often pupils who would be particularly difficult to support represent the major constraint to inclusion: lack of in ordinary schools. Special schools are now more schools or adequate learning environments, short- closely linked to mainstream schools in a variety of age of teachers, lack of materials and an absence of ways, sharing resources and training and sometimes support.46 On the other hand, attitudes to children located on the same site, a trend increasingly seen with disabilities sometimes favour their inclusion. A across North America and Europe. number of countries (such as Pakistan) have recorded examples of ’casual integration’, in which children Apart from discriminatory legislative measures, hur- with disabilities have been readily accepted in ordi- dles to implementing inclusive education include: nary schools ’because they are local children’. It has been reported that in Viet Nam there is widespread • low priority for children with disabilities among social acceptance of children with disabilities across decision-makers; the general population. A Child Disability Survey in • lack of community awareness and support; 1998 found that the majority of households consist- • reluctance to admit children with severe and ing of children with disabilities said that local people complex disabilities; had positive attitudes towards them.47 Additionally, • inaccessible buildings and curricula that are not systems of customary and non-formal education in adapted to the special needs of children with dis- income-poor countries are based much more on fam- abilities; ily ties, coexistence and the value of the individual, • shortage and/or lack of appropriate training for making this education available to all community teachers, at all levels; members without distinction.48 While these tradition- • lack of support from special schools where these al systems have been weakened, they have not been exist; entirely lost in the face of modernization. • lack of targeted funding. Institutionalization and lack of appropriate care To some extent, income-rich nations with a relatively long history of segregated education for children Four decades of work to improve the living with disabilities present different barriers to inclusive conditions of children with disabilities in education than those found in income-poor countries. institutions have taught us one major lesson: there In the former, many ordinary primary and secondary is no such thing as a good institution.49 schools are not physically accessible to pupils with (Professor Gunnar Dybwad, founding father of the limited mobility.45 Access to the curriculum is even movement for inclusion, parent advocacy and self- more problematic for children with intellectual impair- advocacy for persons with disabilities) ments and learning difficulties, though this is being addressed in a number of countries. Also, some of Placement of children in institutional care remains a the most significant barriers result from the legacy of common response to disability in some parts of the policies and structures that have influenced attitudes world. The ability of parents or caregivers to cope and mindsets and so created resistance to change. with a child with a disability may be compromised for different reasons. They may, for example, find Market forces may also encourage discrimination themselves isolated in a community that does not within the education system. Schools oriented on understand their child’s impairment; and they may results generally publish formal assessments of pupil lack the needed economic and social support, or the attainment that foster an educational culture where required information, to be able to provide the needed parents and students compete to attend the best care and assistance for their children. schools. Children with disabilities may find them- selves excluded if it is feared that they may compro- However, it has become widely accepted that mise overall results. In this and other contexts, there institutional care for children whose needs cannot be may be resistance to attendance by children with dis- met within their own family is highly detrimental to abilities by the parents of children without disabilities. their well-being and development. Institutionalization often means that children are cut off from their Families often face further obstacles in securing a families and the life in their communities. Research place for their child in an ordinary school. For exam- has demonstrated that children experience ple, children placed in ordinary schools may not be developmental delays and potentially irreversible able to have access to speech or physiotherapy on psychological damage by growing up in such
17 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 environments. Even in a well-staffed institution, a community to help parents address the needs of child rarely gets the amount of attention he or she these children. Combined, these factors often result would receive from their own parents and families, or in parents having little option but to assign their from substitute caregiver families in the community.50 children to residential care. In addition, children in these settings are denied the important benefit of modelling by other children, Trends like these were seen in the Russian which is critical for learning. Federation, where economic hardship following the transition contributed greatly to problems faced by Under the CRC, children, including children with children with disabilities and their families. With disabilities, have the right to be cared for by their fewer resources available to them in the community, parents (article 7) and not be separated from their more and more parents were forced to place children parents unless a competent authority determines in institutions; in turn, the budgets of the institutions, this to be in the child’s best interests (article 9). In already stretched, were required to cover the costs this regard, there is little evidence to suggest that the of an increased number of children.54 In 2002 more best interests of a child with a disability are promoted than 200,000 children were living in 1,439 boarding through segregated structures or facilities rather than schools (internats), although only 11 per cent of in an inclusive society in which all children are able to them were orphans, and a further 30,000 children experience and benefit from diversity. with severe physical and intellectual impairments, half of whom were orphans, were cared for outside This is reinforced by the CRPD (article 23), which the education system in 151 boarding homes run by requires: “States parties shall undertake that where social protection agencies. A further 20,000 young the immediate family is unable to care for a child with children, mostly abandoned, lived in 249 infant homes disabilities, to take every effort to provide alternative run by health authorities.55 care within the wider family, and, failing that, within the community in a family setting.” The practice of institutionalization is by no means restricted to Central and Eastern Europe and the CIS. Furthermore, article 25 of the CRC states: “when Recent reports examine conditions in institutions, for a child has been placed for the purposes of care or example in Latin American countries,56 as well as in treatment, she/he has a right to a periodic review the Middle East and South-Eastern Europe.57 of treatment provided and all other circumstances relevant to the child’s placement.” The available For countries with a strong tradition of institutional evidence suggests, however, that such reviews rarely provision, a major priority must be to develop take place. appropriate services and financial supports in the community, especially to prevent abandonment and Once institutionalized, adolescents and young neglect.Wherever possible, if children cannot live persons with disabilities are also at increased risk of with their own families they should be in alternative neglect, social isolation and abuse. The World Report family situations, that is, living in ordinary homes on Violence against Children, for example, presents in the local community. These families should be evidence on the incidence of violence in relation to supported by experienced professionals and should the provision of care, including by institutional staff; be financially rewarded for their work and care. violence represented by a lack of care; and bullying The children should receive appropriate education and physical violence by other children.51 tailored to their needs, preferably in a regular school with appropriate support or, failing that, in a special In almost all countries in Central and Eastern Europe class or special school. Continuing contact with the and the Baltic States, the number of children in natural family needs to be maintained, with a view public care increased after transition. The number to their resuming care for the child at some point of children with disabilities living in institutions rose in the future, this time with additional support from rapidly during the early transition years, doubling and professionals in the community. In the meantime trebling their numbers over a short period. At the professionals like these should be recruited and end of the 1990s, close to 1 million children (about trained. In many cases there is scope to increase 1 per cent of all children) were reported to be living the capacity and involvement of other existing social in institutions in the 27 countries of the CEE/CIS networks, including faith-based groups and trade and Baltic States, including 317,000 children with unions, in support of such initiatives. disabilities.52 Medical conditions such as epilepsy, cleft palate and scoliosis are sometimes considered Many countries in Central and Eastern Europe and the sufficient reason for the unnecessary placement of Baltic States have begun to address these problems children in a long-term residential facility.53 A variety and to develop alternatives to institutional care, such of reasons are given to justify such institutionalization: as adoption, fostering and guardianship. However, professionals may insist that institutions will provide the pressure for institutional placement remains the most effective care; there is a lack of support strong. Outside this region, a number of countries for families to allow them to care for these children have closed all their residential institutions for children at home; few services and supports exist in the with disabilities and developed the kind of provision
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 18 summarized above. Others are in the process of As observed by the World Report on Violence doing so, not only for children but also for younger against Children, commissioned by the UN Secretary- and older adults with disabilities. As described more General, “children with disabilities are at heightened fully below, in addition to creating alternatives to risk of violence for a variety of reasons, ranging from institutional care, effective mechanisms of social deeply ingrained cultural prejudices to the higher protection need to be put in place that reach the emotional, physical, economic, and social demands most vulnerable families and caregivers.They include that a child’s disability can place on his or her educational and health care support, including fee family.”59 Impairments often make children appear waivers, provision of day-care facilities and home- as ’easy victims’, not only because they may have based care, material support to families living with difficulty in defending themselves or in reporting disability (tax breaks, cash transfers, in-kind support), the abuse, but also because their accounts are often counselling and social work services. dismissed.60 Violence against a child with a disability may be perceived as somehow less serious and the In the meantime there is much that can be done child’s testimony may be regarded as less reliable to create better conditions within the institutions. than that of a person without disabilities. Sometimes Accommodation can be altered to enable children there is a reluctance to report rape or other forms to live in small family groups and to be looked after of sexual abuse for fear of bringing more shame by staff who act as consistent surrogate parents upon an already stigmatized family.61 The problem is in environments that resemble an ordinary home compounded because initiatives to protect children to the greatest possible extent. National standards from abuse rarely include children with disabilities of care can also be established and rigorously in their remit.62 Similarly, although article 39 of the monitored through an independent inspectorate, as CRC calls for recovery and reintegration support for recommended by international standards, including children who have suffered abuse, this is far less the CRPD. often provided for children with a disability.
The training and support of residential care staff In addition, as a review carried out for the UN is of paramount importance in this process. It is Secretary-General’s Study on Violence against not surprising that totally inadequate numbers of Children notes, “disabled children are also untrained and unsupported staff working in very poor disproportionately represented in the criminal conditions will resort to institutional methods of block justice system. Furthermore, once in the system, treatment that leave children without toys, stimulation they often fare far worse than their non-disabled or personal attention. Given additional resources and peers.”63 The review considered the often inadequate training, however, staff can adopt more humane and understanding of disability concerns by officials in the child-centred approaches to caring for children. legal, law enforcement and correctional systems. In consequence they may not recognize problems or The provision of high quality and well-staffed conditions, or know how to protect and support these educational facilities in all remaining institutions children. For example, deaf children will not be able to should be a high priority, so that children are given use telephone hotlines to report abuse. There is a clear an effective opportunity to enjoy their rights to need for staff development and support in this area. education, regardless of where they are living. Disability in conflict and emergency situations Protection from violence, exploitation and abuse Conflict, civil unrest and natural disaster represent Children are entitled to protection from violence, significant causes of childhood impairments – exploitation and abuse, including from economic as well as barriers to supporting children with exploitation, sexual exploitation and abuse, sale, disabilities in these situations, for example among trafficking and any similar practices prejudicial to the refugees and internally displaced populations. child’s welfare. Children and young persons with disabilities have been reported as being significantly Children with disabilities are especially vulnerable more likely to be the victims of physical, sexual in emergency situations. They are often the first and psychological abuse than their peers without to be abandoned by families and usually the last to disabilities. The powerlessness, social isolation and receive emergency relief and support.64 A disability stigma faced by children with disabilities make them perspective is rarely present in assessments highly vulnerable to violence and exploitation in their from the early stages of an emergency, and it is own homes, as well as in care centres, institutions or also possible that, under pressure, humanitarian on the street.58 A child who requires assistance with care workers revert to segregating persons with washing, dressing and other intimate care activities disabilities and even accommodating them only by may be particularly vulnerable to sexual abuse. impairment category, as happened in the Freetown Perpetrators can include caretakers, attendants, amputee camp in Sierra Leone. family members, peers or anyone who enjoys a position of trust and power. School bullying is also a Children and adolescents may be separated from form of abuse. their families for long periods, with devastating
19 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Box 5.2 Landmines cause disability in Angola or more of the above six areas was reportedly inadequate to meet the needs of mine survivors While the total number of landmine victims in and other persons with disabilities.66 When children Angola is not known (due to limited data collec- are left injured, their growing bodies and bones tion), government estimates report that there are will require, on average, a new prosthesis every six 70,000 to 80,000 mine survivors, representing months. This places an immense financial burden nearly 80 per cent of all persons with disabilities. on families who are often already living in difficult The proportion of casualties who are children is circumstances.67 therefore also unknown. It is estimated, howev- er, that 85 per cent of mine survivors are young Children involved in civil wars and disturbances are people (70 per cent of whom are illiterate).i The particularly likely to suffer psychological trauma Committee on the Rights of the Child has noted and long-term damage. Providing emotional and with concern the large number of landmines personal support to children should be addressed as remaining across the country and continuing to a high priority. cause injuries to children and pose a threat to their survival and development.ii Particularly in the period since the December 2004 tsunami, understanding has grown of the need for There are few facilities available for people with specific provisions for persons with disabilities, physical disabilities in Angola and the provision including children, in relation to natural disasters. of any type of assistance, particularly outside The distinct needs of persons with disabilities major cities, has been significantly affected by must be taken into account, with their direct the long years of armed conflict.iii involvement, in emergency planning and training, and in the design of systems for evacuation, Sources: shelter and emergency communications. Persons i Landmine Monitor Report 2006, Angola,
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 20 affecting them, and to have these views given due of prejudice, inaccessible information or venues, or weight in accordance with the age and maturity because these children are simply overlooked. of the child.70 All too often, however, there is a reluctance to recognize the competence of children For persons with disabilities, the transition with disabilities to contribute effectively to decision- from childhood to adulthood is complex, in part making processes. This can be compounded by because they may be denied new experiences and attitudes of caretakers, teachers and even parents, information considered essential for their peers who may underestimate the ability of certain without disabilities. Adolescents with disabilities children to contribute a valid opinion. Changing often receive little or no information about health, such views about the ability of these children life skills and sexuality, putting them at greater to participate – or to benefit from support in risk of sexual abuse and of acquiring sexually participating – in discussion and decision-making transmitted infections, including HIV/AIDS.73 concerning their lives is critical. It represents Similar challenges exist with respect to substance a major challenge to prevailing attitudes and abuse, yet many of the factors that increase preconceptions in all countries, one that must be pressure on any young person to drink, smoke or addressed through training as well as through wider take illicit drugs – social isolation, loneliness and efforts to shift public beliefs and attitudes. depression – are frequently found among young persons with disabilities. The availability of timely and appropriate information and knowledge resources – for persons with Very few young persons with disabilities succeed disabilities, their families, service providers and in finding work in any country. Even if they do, the public – is critical to improve access to quality it is likely to be of lower status, less secure and services, increase participation in decision-making more poorly paid than that of their peers without and create public awareness and demand. Article disabilities. In many of the transition economies, 17 of the CRC asserts a child’s right to information workers with disabilities who enjoyed guaranteed and material aimed at the promotion of the child’s employment under socialist regimes now find social, spiritual and moral well-being and physical themselves without work, while in all countries and mental health. the chances of persons with disabilities finding stable salaried employment are far smaller than Two innovative examples in the Americas represent for their peers without disabilities. Many more potential models for adaptation in other countries young persons with disabilities enter the informal and regions. A National Dissemination Center for economy. Inside the home this may involve Children with Disabilities serving the United States performing domestic tasks, assisting with home- and related territories provides families, students, based work or tending animals, while outside the educators and others with information on topics home it is likely to mean performing menial tasks or regarding children and youth with disabilities. even begging. Multiple communication strategies are used in order to reach different population groups: direct contact While some children with disabilities will wish through telephone, correspondence and email, to continue with formal education on leaving as well as provision of web-based information school, others may welcome the opportunity to and resources (including in an audible version). prepare for the working world. Whatever their Based on this US experience, a similar initiative, priorities, well-planned and coordinated transition Entre Amigos, is underway in Brazil. This service arrangements are essential. These might include has similar objectives but has used a different the provision of vocational training; meaningful development approach, which builds on the work experience for individuals of at least the experience and contacts of more than 20 Brazilian minimum age of access to employment; and tax partner organizations.71 incentives to mobilize employers wherever feasible. Employers, employees and workers’ organizations Just as important as information provided formally such as trade unions have important roles to play is the opportunity for informal learning through in the promotion of equal opportunities in the the interaction of children with disabilities with workplace. In particular, this involves establishing their peers. This in turn will allow them to explore, conditions in the workplace aimed at the inclusion develop, learn and form opinions in the same of young persons with disabilities who have way as other children. Unfortunately, policies and access to employment in conformity with relevant programmes addressing the specific requirements international standards. Employment structures of young persons with disabilities are rare and and social security support will, in turn, need to be usually limited in scope.72 Children with disabilities tailored to the needs of individuals. lack many of the opportunities open to other children in areas such as learning, recreation, participation in sports clubs and societies, and inclusion in projects established by governments, NGOs or international agencies. This may be a result
21 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 6 FOUNDATIONS FOR inCLUSION
The important question for children with disabilities interact with their peers and to participate in society, is not whether, but how they can be fully included, the greater the benefit is likely to be for all children. as members of their families, schools, communities and society. Early identification and assessment, combined with appropriate interventions, mean that potential difficul- Working with families ties can be identified in time to limit the consequenc- es of an impairment on a child’s life and development The process of including a child with a disability in and to maximize participation in all the activities usual society as a whole begins with access to everyday for the child’s age group. Primary health care work- experiences in the home setting, with parents and ers, along with other community workers, have a key caregivers playing a central role.74 For children with role to play in identifying infants and young children disabilities, early intervention involving stimulation with developmental delays and impairments, and in and interaction with parents soon after birth is es- supporting families to help their child to learn and sential to development. Like every other child, a child develop. Early identification can also be promoted with disabilities has his or her own evolving capaci- through the preparation of all family members, espe- ties. At each stage of the life cycle – starting with cially parents, to monitor their child’s developmental early detection and family-based early intervention progress through the use of simple instruments, through different levels of educational and recrea- strengthened with a basic understanding of children’s tional development to the specific requirements that capacities at different stages. The participation of the come with adolescence – there are different critical wider family, especially grandparents, is of great im- moments, challenges and opportunities in every portance in ensuring parents feel supported and val- child’s development. Inclusive practices are relevant ued in this process. Health and community workers for children with disabilities at all ages. However, the need to encourage the involvement of the extended earlier these children are given the opportunity to family wherever possible. © UNICEF/HQ06-0223/Gulshan
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 22 Box 6.1 The Portage Model In South Africa, where significant progress is being made to promote the rights of children with disabili- The Portage Model for Early Intervention,i which ties, the Law Commission Review of the Child Care originated in Portage, Wisconsin, USA, was Act 1983 recognizes the importance of empowering developed in response to the growing need parents to care for their children at home. It suggests to provide services at home to young children that this requires improved health care services, ac- with disabilities living in rural communities. The cessible schools, free or affordable assistive devices model has now been adopted in 90 countries and and support programmes for parents. It also stresses translated into more than 30 languages. the need for a more integrated approach to the deliv- ery of services in order to help parents navigate their Because the role of a child’s parents and family way through the system more efficiently and receive is critical to the child’s successful early devel- more coherent and effective provision.75 opment, the first priority is to support family members in their own homes to become more A pioneering example of an influential home-based confident and competent when there are con- approach is the Portage Model for Early Intervention cerns about a child’s development. The Portage (see box 6.1). Model provides well-structured assessment and learning procedures and an individualized An early intervention programme with some similar- curriculum based on the child’s current level of ity to Portage has been run by the Samadhan NGO development and the family’s own priorities and in the poorest areas of Delhi, India for some years. resources. Although the home is regarded as Samadhan trains local community workers, the ma- the natural learning environment, the model can jority of whom are women, to identify children with also be centre-based in the local community, as impairments – particularly intellectual impairments – in Japan. in their community. Under the early intervention pro- gramme, which caters for children up to six years of Portage activities stimulate the achievement age, community workers collaborate with mothers in of developmental milestones that will help a one-to-one situation in the family home. This helps maximize the child’s independence as well as to increase the mother’s confidence and also encour- empower parents and caregivers through active ages other family members to become involved in involvement in their child’s development. Parents the child’s development. Families are supported by are assisted by a Home Visitor who works with neighbourhood community centres established by them to decide on priorities for the next steps Samadhan, where assessment, screening, diagnosis in development, and they jointly decide on the and programme planning is done. Apart from provid- means of helping the child to reach each new ing support for early childhood development, the milestone, however small. community workers create simple toys and teaching aids from locally found and low-cost materials.76 The Home Visitors come from several backgrounds: early intervention service has been a great success, they may be teachers, occupational therapists or particularly because it fosters the active involvement social workers. They can also be other parents of women from the low-income target communities who have experience working with young chil- where Samadhan operates.77 dren, in which case they are provided with train- ing by the Portage Association. Although Home Other issues may arise as parents or caregivers grow Visitors need only a brief period of preparation, older and in turn come to require support. Crea- they have continued access to support through tive solutions include ’shared care’ or short break weekly group meetings with a supervisor. schemes. Short break carers look after children with disabilities on a regular basis for limited periods of While the Portage Model usually requires chil- time. These can be anything from a few hours a dren and their families to work in isolation, the week to a few days a month. This gives the parents approach offers distinct advantages: it is popular a break from providing full-time care and helps chil- with families; it represents a highly structured, dren make new friends, widen their experience and yet simple and modifiable teaching package; it expand their social circle.78 The provision of shared uses a home-based approach adaptable to daily care is also critical when children are very young and living skills; it is inexpensive, widely available parents are adjusting to new challenges. and easy to translate; it enables greater continu- ity of care than segmented service approaches; Outside the home, parents’ organizations, whether and it provides a means to strengthen the bond formal or informal, have an enormous potential to between children and families. promote positive attitudes towards children with dis- abilities, advocate for change and raise the profile of Source: disability issues both at local and national levels (see i See
23 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Los Pipitos is an active parents’ organization in Box 6.2 Parent advocacy in Newham, London Nicaragua that supports children and adults with dis- abilities through innovative community programmes, In the London borough of Newham, which is a including dance and creative movement, visual arts, multicultural, socio-economically deprived inner- drama and music.79 It was founded in the mid-1980s, city area, the success of educational inclusion when 21 parents of children with a range of impair- illustrates the achievement of parents.i ments met in the garage of a house in Managua to share knowledge and exchange experiences with the In 1984, a group of parents of children with dis- aim of finding alternative and creative ways to help abilities who wished to see the end of segregated their children. Today, Los Pipitos has a membership special education stood for election to the Bor- of more than 14,000 families throughout Nicaragua.80 ough Council, and were eventually elected. The result was a council policy that recognized the Support through parents’ organizations is often right of all children, whatever their needs, to learn crucial as well for such purposes as assisting together. From the start, the process envisaged families with health services for their children radically changing mainstream schools rather with disabilities, whose health situations are often than fitting children with special educational particularly challenging. A useful example is provided needs into the existing system. by Family Voices, a US-based national grassroots network of families and friends that presses for There is now only one special school in the bor- comprehensive and culturally suitable health-care ough, as compared to the total of eight in 1984. services for children and youth with special needs. In 1986, only 7 per cent of children identified as The network, which provides significant informational having special educational needs attended main- and advocacy resources, focuses on family-centred stream schools, but by 2001 this figure had risen and community-based services with the aim of to 79 per cent. An independent report commented promoting the role of families in decision-making at that having to cater for children with serious all level of the health system.81 learning difficulties helped schools to make better provision for all pupils, evidenced by a marked Working with communities improvement in school achievement and exami- nation results through the whole of Newham. Even within a single country, some communities have made much more progress than others. Source: i What may seem impossible in one place may be Material from Jordan, L. and C. Goodey, ’Human Rights and School Change: The Newham story’, 1996, provided common practice in another. There exists, therefore, in Disability Equality in Education, Inclusion in Schools a great potential for communities to learn from one Course Book, Disability Equality in Action, London, another. When the resources represented by other 2002. children, families, adults, teachers and community workers are drawn upon, all persons with disabilities, including children and adults with severe impairments, can make a valuable contribution to the relevance. For this reason, the CRPD includes a spe- life of their community. cific clause requiring States parties “to ensure that children with disabilities have equal access with other With creative thinking and the vision of children children to participation in play, recreation and leisure themselves, many apparent barriers can be trans- and sporting activities, including those activities in formed into opportunities. Diversity in the classroom the school system.” – often a source of concern for teachers – can be- come a resource for learning. Children with differ- There are many examples of good practice encourag- ent strengths can support each other in a number ing the inclusion of children with disability in sport of ways, introduce different experiences and break activities, with the involvement of UN organizations, down prejudices and preconceptions. Indeed, time disability NGOs and a wide range of generic and dis- and time again it is reported that it is all children ability-specific sports organizations.82 Examples from who benefit. By learning to live and work together, Bosnia and Herzegovina, Lao PDR, Malaysia and the they lay the foundations for an inclusive society. For Russian Federation demonstrate that access to sport example, toys and educational materials for children and recreational facilities is not only of direct benefit with disabilities have often been produced locally. to children with disabilities but also helps them to This is not only cheaper, but more appropriate: it of- participate in valued activities with other children and fers employment for local workers, and children with thereby enhances their standing in the local commu- disabilities themselves can contribute ideas to design nity. Sport has been found particularly useful in areas and production. of conflict to prevent accidents caused by landmines by the creation of play-safe areas and by teaching all Encouraging children with disabilities to take part children how to avoid and identify mines, as well as in sport and recreational activities in company with to develop ways of promoting the inclusion of chil- their all their peers wherever possible is of critical dren with disabilities in the local community.83
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 24 Box 6.3 World Health Organization programme on disability and rehabilitation
The mission of the Disability and Rehabilitation • building capacity among health and rehabilitation (DAR)i initiative of the World Health Organization policymakers and service providers, and (WHO) is “to enhance the quality of life for persons • fostering multisectoral networks and with disabilities through national, regional and partnerships. global efforts.” The DAR team works with partners who implement programmes, including organiza- The DAR programme provides support to WHO mem- tions representing persons with disabilities, and ber states for policy development and for the integra- national and international professional and non- tion of rehabilitation into primary health care. Within professional non-governmental organizations. the United Nations system, the DAR team collabo- rates with the International Labour Organization (ILO), Current activities include: UNESCO and UNICEF to promote and strengthen the • raising awareness about the magnitude and community-based rehabilitation strategy for rehabili- consequences of disability tation, equalization of opportunities, poverty reduc- • facilitating data collection and analysing or dis- tion and social inclusion of persons with disabilities. seminating disability-related data and information • supporting, promoting and strengthening health The World Health Organization is currently leading and rehabilitation services for persons with dis- the preparation of the World Report on Disability, to abilities and their families be released in 2009. • promoting the development, production, distri- bution and servicing of assistive technology Source: i • supporting the development, implementation, World Health Organization DAR website
Toy libraries can also provide an invaluable resource to A disability perspective is encouraged in all these children and families. In Serbia and in Montenegro, toy activities by raising the awareness of staff, promoting libraries have been set up in 20 towns with the sup- awareness-raising campaigns, inserting a disability port of Save the Children and UNICEF. These libraries dimension into induction programmes for new staff are staffed by teachers, special education teachers and by training project workers, such as the traditional and psychologists on a voluntary basis. Once a week birth attendants who participate in the health projects. creative workshops are run for the children, including drama, drawing and terracotta, as well as discussion This point is also illustrated by the experience of groups during which parents and children can share the Women’s Credit and Savings Programme in their experiences.84 Viet Nam, established by Save the Children and run through the local Women’s Union. Monitoring Entry into the education system offers another oppor- of these micro-credit schemes demonstrated that tunity to identify impairments and provide appropriate although some persons with disabilities were using support. In Fiji, the NGO Project Heaven carries out the scheme, many families with disabled members early detection of disabilities (visual and auditory im- living in extreme poverty were afraid to borrow for pairments) among all primary and secondary school fear they would be unable to repay the loans. An students. The success of the project encouraged the awareness-raising workshop held in partnership with Ministry of Education to integrate it as a regular fund- the Women’s Union led to improved access to the ed activity of the Ministry.85 scheme for women with disabilities and mothers of children with disabilities. These improvements Many simple and creative initiatives to support included an increase in children with disabilities children with disabilities do not require new receiving scholarships and attending school and infrastructure or investment, but can simply build the provision of free essential treatment, including on community strengths and pre-existing facilities. treatment of children suffering from cleft palate and In Bangladesh, Handicap International and its eye conditions. Provision was also made for families local partners have worked to integrate a disability with disabled members to receive assistance with dimension into the work of community development their harvest. The overall result was that the largest organizations through its programme on Community NGO credit scheme in Viet Nam gained a clear Approaches to Handicap and Development. The disability perspective.86 partners work with over 100 local community development organizations active in mainstream Where programs work through community develop- development activities, including fishing, micro- ment organizations, they avoid having to incur extra credit, health, housing, legal aid and women’s justice. costs and benefit from existing skills, connections
25 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 and knowledge.87 Conversely, where these already Box 6.4 Using local resources to produce exist, segregated services can provide outreach to low-cost aids in Mexico and the Philippines the whole community. In India, for example, special schools run by the Spastics Society were opened to Projimo (Program of Rehabilitation Organized children without a disability living in nearby deprived by Disabled Youth of Western Mexico) has urban areas.88 promoted community-based health and rehabilitation initiatives.i A programme run With regard to older children, in Belarus UNICEF has from the outset by and for persons with worked with partners in providing children with dis- disabilities, Projimo broke new ground in grass- abilities with better care and opportunities for devel- roots health and empowerment. opment and integration. Family support models of collaboration between NGOs, local authorities and Among Projimo’s many initiatives is its Skills public agencies were developed and implemented in Training and Work Programme that provides 18 regions of the country. Children and adolescents constructive work opportunities. This includes were offered access to information and training in life the Children’s Wheelchair Project in the and vocational skills. In all, more than 2,500 children Sierra Madre mountains that produces low- and adolescents with disabilities benefited from this cost wheelchairs customized to fit individual project.89 In addition, almost 1,000 parents of children needs. Using wood, metal, bicycle tyres and with disabilities were given counselling and training to basic designs, the project produces over 100 strengthen their knowledge and skills to support them individually designed wheelchairs each year. in providing their children with better care. The demand for these wheelchairs is extremely high, and the master wheelchair builder, who Community-based rehabilitation has an impairment himself, receives requests to train community-based craftworkers from all A specific form of local support is community-based across Mexico. The Netherlands-based Stichting rehabilitation (CBR) programmes that are designed and Liliane Fonds helps to cover the cost of the run by local communities. CBR, which was first devel- wheelchairs for children from poor families.ii oped in the late 1970s and early 1980s by the World Health Organization (WHO), is a “strategy which, Most of the wheelchairs found in the Philippines within general community development, promotes are donated from other countries. However, rehabilitation, equalization of opportunities, poverty harsh road conditions in rural areas necessitate reduction and social inclusion for all children and adults customized wheelchair production. In 1996, with disabilities at a local level.” The major objective the National Federation of Disabled Persons of CBR is to ensure that persons with disabilities and (KAMPI), with support from the Department their families enjoy access to regular services and op- of Social Welfare and Development and a portunities. In this way, they become active members fundraising organization associated with a of their communities and, equally, communities feel a Japanese newspaper, set up a training project sense of ownership with regard to these projects.90 for persons with disabilities who were interested in making wheelchairs in their own communities. Community-based rehabilitation is implemented through the combined efforts of persons with Within months, KAMPI affiliate organizations disabilities themselves and their families in the were producing low-cost wheelchairs using neighbourhood, along with the appropriate health, materials that can be purchased from any local education, vocational and social services. The bicycle store: frames made of steel tubes and potential of CBR is fully realized when there is a wheels using bicycle tyres. Repairs are normally strong culture of sharing information about good be made by local welders or mechanics. KAMPI practice, and in providing evidence about coverage, wheelchairs were found to be both sturdier and quality of service, sustainability, comparability and less costly than commercial wheelchairs. cost effectiveness – a key characteristic of CBR projects when they are well managed.91 Sources: i United Nations Economic and Social Commission for Asia and the Pacific, ’Production and Distribution of Community-based rehabilitation can benefit everyone Assistive Devices for People with Disabilities: Part 1’, in the community. For example, when the community United Nations, New York, 1997,
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 26 A global resource for the promotion of CBR is Overreliance on institutional care for children in provided by WHO’s Programme on Disability and Central and Eastern Europe and the former Soviet Rehabilitation, which is discussed in box 6.3. Union has in turn encouraged a number of new initiatives for deinstitutionalization, with positive Community-based rehabilitation is a general strategy, results. As an example, in the Saratov region of within which specific initiatives will respond to local the Russian Federation, a Rehabilitation Centre for situations. In Guyana, for example, a CBR project Disabled Children has been established with the aim was started in the coastal areas of the country by of preventing institutionalization. The Centre sends parents of children with disabilities. Subsequently, out mobile teams of professionals who provide the decision was taken to extend the programme rehabilitation services to children with disabilities to indigenous Amerindian communities in the living at home. As in the Portage programme, they interior. As a first step towards establishing a CBR teach children skills to facilitate their inclusion into programme in the region of Rupunini, a meeting society. Family members, who are informed of their was organized to which community leaders from the legal rights and entitlements as caregivers, are also surrounding villages were invited. When it emerged trained to support children. The Centre has served that some of the villages had no schooling facilities many thousands of children and family members.96 whatsoever, it was decided that the CBR programme (See box 6.5 for examples from Bulgaria.) would support the setting up of village schools as well as training activities for teachers, village health An important lesson to be drawn from these workers and community volunteers. initiatives is that deinstitutionalization programmes must go hand in hand with relevant developments at Within this structure, the communities themselves the community level. Structures must be changed, promoted the issue of education for children with appropriate long-term support mechanisms need to disabilities. This example illustrates how taking a be put in place in the community, and understanding disability perspective from the initial stages of a and acceptance of children with disabilities in wider project and working within a community context society must be promoted for deinstitutionalization helps to promote education for all.93 not to give rise to its own set of difficulties. For example, sexual and physical abuse is a risk in Other interesting CBR initiatives discussed in box the community just as it is in institutions, and a 6.4 illustrate how low-cost local solutions offer the child’s right to protection can be reinforced by the advantage of being both sustainable and sensitive to establishment of an independent oversight system to specific situations. monitor protection issues.
From institutions to communities Towards inclusive schools and learning environments Many of the initiatives that have been discussed, especially those relating to families and communities, Inclusive education involves ensuring that meaningful are essential foundations for the successful learning opportunities are made available to all promotion of alternatives to institutional care for students within the regular educational environment. children and adults with disabilities. These include The ’World Conference on Special Needs Education: the introduction of measures that reduce the Access and Quality’ held in 1994 in Salamanca, Spain pressure for children to be admitted to institutions provided decisive support for inclusive approaches to in the first place, including the development of education. It unanimously adopted the Statement and child-centred public services, accessible schools a Framework for Action on Special Needs Education and the provision of local supports and services.94 providing guidelines for action at the national level as These elements can be complemented by the well as regional and international cooperation in the development of support programmes for and by promotion of inclusive education. families and the establishment of community-based alternatives. These new community services can be Ideally, inclusive education means attending the age- developed with the active involvement of parents and appropriate class of the child’s local school, with indi- community organizations. vidually tailored support. Inclusive education means that schools must change to accommodate a much Immediate changes that might be introduced wider range of children. For example, the curriculum in existing institutions include restricting new needs to be differentiated to ensure access to a wide admissions where alternative support structures are range of children – not just children with disabilities – already established, improving the quality of services and should reflect the needs and interests of children and protections against abuse, and regrouping in the local community. Children are taught in small children into smaller ’family style’ units, where groups and are helped to support one another rather girls and boys of a range of ages and abilities live than to compete. Inclusive schools pay particular in smaller groups with a ’house’ parent or parents. attention to developing appropriate methods of as- Sometimes such smaller family groups can be set up sessment and avoid all unnecessary segregation of in the local community.95 children within the ordinary classroom. They also pay
27 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 particular attention to school-based teacher prepara- Box 6.5 Bulgaria’s National Social tion and support and to involving parents in the life of Rehabilitation Centre the school and in fostering the development of their child. Above all, the leadership provided by the head In Bulgaria, the National Social Rehabilitation teacher/principal of the school has been shown to be Centre set out to establish a new model of the key to the successful management of change to care and services to change the practice of more inclusive practice. placement of persons with disabilities in isolated ’social care’ homes, and so to prevent young Inclusive education is by no means a luxury available persons with disabilities being overlooked to only income-rich countries. Indeed, many of the by society.i This involved the provision of most innovative and radical developments are now community-based services, building strategies taking place in low-income countries, such Lao to ensure the replication of good practice, and PDR, Lesotho, Morocco, Uganda, Viet Nam and cooperating with the national government and Yemen.97 Experience has shown that there are ways local authorities to create conditions for equal of developing inclusive practices at the local level participation of persons with disabilities in that do not involve additional funding: collaborative public life. Their programme was started with work between students, parental involvement in the financial support of the European Union. the classroom and teacher problem-solving and mutual support have been shown to be effective.98 The Saint Mina day centre in Sofia, the first day For example, until recently South Africa had a care centre for children with disabilities, was rigid curriculum characterized by traditional forms established in 1997. It receives 26 children a day of assessment and grading. This has now been and another 30 for consultancy. Children who replaced in favour of ’outcome-based education’, attend the centre have made significant progress which replaces a specification of content with one in their development and some now attend based on outcomes. These are accompanied by mainstream schools. The first National Social ’assessment criteria’ and ’performance indicators’ Rehabilitation Centre regional bureau for social against which students’ achievement of outcomes services was established in the city of Bourgas can be assessed.99 with the cooperation of the municipality. There are now also bureaus in the towns of Varna, Existing flexible education approaches can often Ponmorie and Stara Zagora. This initiative be used to promote more inclusive education for has led the way in Bulgaria’s move towards all children. The Colombia ’Escuela Nueva’ model, social reform from a system of social/medical designed as a multigrade approach for rural areas, institution-driven care to one based on the promotes active learning and provides an excellent model of community care. opportunity to respond to individual learning rates and needs. Flexible promotion from one level to the Source: i next and individualized instruction allow students to Department for International Development – DFID; Development Planning Unit, University College London, advance at their own pace. Students are encouraged for United Nations Human Settlements Programme to help others; peer instruction is practised, with (UN-Habitat), Implementing the Habitat Agenda: In older students tutoring younger ones.100 In Brazil, search of urban sustainability, Development Planning the Child Friendly School Model and ’speed-up Unit, University College London, 2001. classes’ also represent important opportunities to expand inclusive education for all through approaches focused on the child or adolescent.
Many countries are now facing the challenge to set In contrast, where educational resources and struc- up new systems of basic education for all, ensuring tures are already relatively well developed, a major that marginalized groups are included from the challenge is to ’unlearn’ entrenched practices based outset. This is true in countries where there is little upon a philosophy of exclusion and to direct resourc- or no formal schooling in place. It is also the case in es in new ways. Promoting inclusion need not mean other countries – such as in parts of South-Eastern losing the resources represented by special schools: Europe – where the education of children has been for example, there is the opportunity for such schools severely affected both by armed conflict involving to act as resource centres during a period of transi- the physical destruction of schools and by a large- tion and staff with specific experience in the field of scale migration of teachers to other countries. disability can become an invaluable resource in local In such situations it is important to ensure that schools. National support is crucial for the success of all new schools are designed to be accessible to such processes. In Costa Rica, for example, efforts students with disabilities, for example by building began in 1999–2001 to establish a National Resource ramps and ensuring that doors are wide enough to Centre for Inclusive Education that supports schools admit children in wheelchairs, that toilets are fully for more inclusive approaches to serving children accessible and that classrooms can be wired for loop with disabilities, and at the same time to improve the systems for children with hearing impairments. quality of education for all students.101
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 28 Box 6.6 Inclusive schooling in Italy: Box 6.7 Uganda: An example of inclusive planning A pioneering approach As a main plank of its commitment to rebuild the In the 1960s, Italy had a well-developed system of social and economic fabric of the country, the segregated schools for children with disabilities. In Ugandan Government has for some years given the the course of the 1970s, however, serious questions highest priority to the education of all its children.i were raised regarding these facilities and both parents and teachers began to press for change. Free primary education is guaranteed to four The Italian Government took up this challenge and children in every family, with priority given to in 1977 passed a law that restricted the placement children with disabilities, as well as to girls. As a of children in special schools and classes and began result, the number of children enrolled in primary to promote the inclusion of these children in regular schools rose from 2.5 million in 1996 to 7.6 million classes. Further legislation introduced in the early in 2003,ii while the number of teachers increased 1990s provides a framework for inclusion policies from 38,000 in 1980 to over 90,000 in 1998. and for cooperation between schools and other services.i This commitment to universal primary education has been made within the framework of the UN At present, some 98 per cent of children assessed Education for All initiative. Uganda was one of the as having some form of impairment are taught first countries to apply for debt relief under the in regular classes, including children with severe UN Heavily Indebted Poor Countries Initiative, in and multiple disabilities. In terms of assessment, return for a commitment to invest the money thus attention is paid to the individual characteristics of saved in health and education. In addition, several the child and the goals that he or she may achieve, international NGOs have entered into partnership rather than comparison against a set standard. This agreements with the government and grants have is carried out within an individualized profile that is been provided to this end by the World Bank, drawn up with the participation of the child’s family African Development Bank, the European Union, and school, along with socio-medical services and UN Development Programme and UNICEF. the local authority. Within this general context, the government has Italian law stipulates that children with disabilities taken a number of specific steps to ensure that the should be given priority in the allocation of places needs of children with disabilities are given priority. in school. Some 40 per cent to 50 per cent of For example, a Department of Special Needs children with disabilities go on to liceo or senior Education and Careers Guidance has been created high school at the age of 16. within the Ministry of Education and Sports; each of the 45 administrative districts has at least one The experience in Italy is that the inclusion of staff member who is responsible for ensuring that children with disabilities in regular classes benefits children with disabilities are admitted to school all children because teachers are required to work and do not drop out prematurely; and the Uganda with pupils in an innovative, non-traditional way. National Institute of Special Education is developing While this experience must be seen within the teacher training programmes at every level and Italian context, its success has had a significant offers support to the 45 district services. impact in challenging existing segregated education provisions in Europe and beyond. However, significant hurdles still need to be overcome in Uganda. For example, reform of the Source: school curriculum and the training and retraining of i Vianello, Renzo and Guiliana Truffa, ’Integrating Children teachers is a slow process. with Disabilities in Italy’, Children in Europe, No. 2, March 2002. Sources: i UNESCO, Including the Excluded: Meeting diversity in education: Example from Uganda, UNESCO, Paris, 2001; and Mittler, Peter, ’International Experience in Including Children with Disabilities in Ordinary Schools’, paper prepared for UNICEF seminars in Tunisia and Italy, October 2002,
29 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Both where there is an absence of facilities and in the Box 6.8 Empowering teachers in Lesotho presence of segregated structures, a growing body of experience indicates the feasibility of successfully In Lesotho, a project was initiated in which implementing inclusive practices in education. This intensive training workshops on inclusion were is demonstrated by two very different countries: provided to local teachers.i Despite large classes Italy, where the shift to inclusive education began as and an absence of basic resources in the 10 pilot early as the 1970s (see box 6.6), and Uganda, which schools that were selected, most teachers were has recognized the crucial importance for national found to be already teaching along inclusive lines development of ensuring that Education for All is not by ensuring that all children − even those in the a distant goal but a reality (see box 6.7). largest classes − were participating, understanding instructions or getting appropriate support from Training teachers for inclusive education other children.
In any country, and especially where material resourc- Additional training received by these teachers es are scarce, the key resource in the learning envi- provided them with basic information about ronment is teachers themselves. It is important that impairments and helped them to develop positive teachers have a commitment to teaching all children. attitudes towards children with disabilities. This Where teachers can receive relevant pre-service and training gave teachers the confidence to refer in-service training and have access to continuing children to local health workers for treatment of support, they are well placed to become leaders and common eye and ear infections that can affect a pacesetters in inclusive education. child’s learning. The success of the pilot schools encouraged the government to adopt the inclusion Inclusive teaching at the level of the classroom of children with disabilities as a national policy and is no more than good teaching anywhere. Many to expand the number of schools involved. teachers are already teaching inclusively without the benefit of additional specialist training (see box 6.8 Source: i for an example from Lesotho). But faced with the As quoted in Mittler, Peter, ’International Experience in Including Children with Disabilities in Ordinary Schools’, challenge of admitting children with disabilities into paper prepared for UNICEF seminars in Tunisia and their class, it is understandable that teachers may Italy, October 2002,
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 30 Involving children with disabilities • The process of participation is a central part of learning to take responsibility, to make decisions As discussed previously, there are numerous reasons and to develop self-esteem and confidence. why children’s participation should be encouraged, • Children with no voice are vulnerable to abuse, in daily life as well as in policy development. These violence and exploitation, since they have no arguments are particularly strong in the case of means of challenging this oppression.107 children with disabilities: Putting such initiatives into place is not a highly • In advancing inclusion and overcoming obstacles, specialized operation requiring significant additional persons with disabilities themselves are the resources. In practice, the inclusion of children with experts – nobody understands the impact of disabilities can be significantly advanced by simply exclusion better than those who experience it. consulting with these children and their families • A key element of citizenship is the right to when setting up projects or structures intended for a express one’s views and to influence decision- general population, or by maintaining an awareness making processes. Denying children with of potential barriers to inclusion in any new initia- disabilities the right to be heard effectively tives.108 Underestimation of the potential of children means denying them full citizenship. with severe or complex impairments is perhaps the • Decisions made about or on behalf of a child are greatest obstacle: experience has shown that all better informed and more likely to produce positive children can be helped to find the means to express outcomes if she or he is involved in the process. meaningful choices and preferences.109 © UNICEF/HQ06-0807/Shehzad Noorani
31 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 7 ENSURING A suPPORTIVE environment
Creating a more inclusive society for all, and for chil- A disability dimension can be introduced at city level dren with disabilities in particular, requires a number in a variety of ways: of preconditions that combine to provide a supportive environment for inclusion. These elements include: • by explicit incorporation of disability issues in local policy and planning; • the presence of local governance structures that • by the promotion of projects to change public promote children’s participation and the realiza- attitudes and promote awareness of the rights of tion of children’s rights; children with disabilities; • the introduction and development of laws and • by the creation of neighbourhood or district policies addressing disability issues; maps developed in consultation with children • mechanisms to permit persons with disabilities with disabilities − which can help provide local and their families to influence disability-related governments and other agencies with a means to policies; promote their rights and address their needs.112 • general and focused raising of awareness; • appropriate budgetary allocations; Laws and policies • adequate monitoring mechanisms to promote and assess progress. Many countries include in their Constitution specific provisions referring to non-discrimination, but while Such a combined approach is critical to ensuring sus- gender, ethnicity, race and religious beliefs are often tainable change and to establishing the most effec- cited as grounds for protection, specific references to tive supportive environments for children at all stages disability are less common. Since the 1980s, consti- of the life cycle. tutional and legislative changes in favour of persons with disabilities have been enacted in a number of Local governance countries, including Austria, Brazil, China, Finland, Germany, Malawi, the Philippines, South Africa, Good local governance pursues policy approaches Uganda, the United Kingdom and the United States. guided by human rights and designed to promote the Research shows that, across regions, 39 states have realization of fundamental rights and freedoms of all adopted non-discrimination or equal opportunity legis- those living under the jurisdiction of the local govern- lation in the context of disability.113 ment authorities. In this spirit, good local governance promotes the mainstreaming of children’s rights in These reforms have been based upon international local plans, policies, institutions and budgets. human rights instruments, including the Convention on the Rights of the Child. They were also influenced In this respect, the Child Friendly Cities initiative pro- by the 1993 UN Standard Rules on the Equalization motes the consideration of the rights of the child as of Opportunities for Persons with Disabilities and the a distinct point of attention in planning, policy-making work of the Special Rapporteur on Disability. The new and resource allocation, with children’s voices inform- Convention on the Rights of Persons with Disabilities ing the democratic process. Child Friendly Cities are also requires a re-examination of legislation and poli- classified as a “city, or any local system of govern- cies in all member States. ance, committed to fulfilling children’s rights.”110 These cities can be found throughout the world, with A commitment to inclusive planning ensures that Bangkok, Buenos Aires, Chicago, Florence, Mexico a disability dimension is clearly present in all policy City and Mumbai as examples. development, implementation and monitoring. To this end, a useful toolkit has been developed and is avail- A key feature of a Child Friendly City is that special able online.114 attention is given to disadvantaged and marginalized children, including children with disabilities. In Cana- A good example of inclusive planning is provided by da, for example, the Society for Children and Youth of South Africa, where the promotion of inclusion for British Columbia is a fully fledged Child Friendly City children with disabilities has been linked to broader programme that has given the issue of disability spe- developments such as the overall reform of the cial attention.111 country’s education system and curriculum, and to changes addressing the status of marginalized groups
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 32 BOX 7.1 Nicaragua: Coordination promotes the such as government ministries, local authorities, rights of children with disabilities development agencies and children with disabilities and their families. Box 7.1 provides an example of In 2002, 15 Local Commissions of Parents with initiatives taken in this respect through UNICEF’s Disabled Children were established in Nicara- cooperation in Nicaragua. gua. Some 168 people from 42 organizations working at the municipal level took part, and 531 The rights of children with disabilities are often parents and family members in 19 municipalities most effectively promoted when ’disability issues’ were trained in detecting disabilities as well as do not come under the responsibility of a single in the education and rehabilitation needs of the ministry. The mainstreaming of disability issues into children concerned. Comprehensive monitoring existing programmes and throughout established visits were carried out in these municipalities. sectors, such as health, education and social welfare ministries, might still involve establishing a focal point With financing from the Swedish International for disability to ensure that children with disabilities Development Cooperation Agency (SIDA), new are included in all programmes. Without this, early childhood education centres were estab- disability issues are in danger of being submerged lished and existing centres restructured to oper- and overlooked. ate with active participation from the local com- munity. All of the centres received rehabilitation One effective initiative has been to establish a na- equipment, and parents and families received tional coordination committee that oversees disability training in how to use it. The early childhood issues in all ministries and at different administrative education centre model supported by this levels to ensure intersectoral coordination. Organi- project was adopted by the ministries of Health, zations of disabled persons should always be fully Education and the Family, and was replicated in represented on an equal basis. In Turkey, for example, other parts of the country. intersectoral coordination has been promoted through the establishment of a coordinating agency, the Ad- Source: ministration of Disabled Persons.118 An alternative is ’UNICEF Nicaragua 2002 Annual Report’ (internal represented by South Africa, where both the Office document), UNICEF, Managua, 2002. on the Rights of the Child, and the Office on the Sta- tus of Disabled Persons, which are responsible for the Integrated National Disability Strategy, are based in general. Similarly, explicit priority is given to children in the President’s Office.119 with disabilities as an integral element of Uganda’s commitment to provide free primary education to four The development of national legislation and policy to children in every family (see box 6.7 above). In Brazil, address disability issues is an opportunity to ensure inclusion is part of wider efforts to address problems that public spaces, buildings, recreation areas and of poverty, marginalization and illiteracy. Some 5 mil- transport systems are conceived or modified in such lion children have benefited from Bolsa Familia, a a way that they can be used by all citizens and that nationwide programme providing grants to the poorest government departments themselves take a lead in families to send their children to school.115 This pro- the employment of persons with disabilities. In this gramme is being implemented along with a national regard, a number of countries have made notable initiative on inclusive education and is further strength- progress in modifying access to streets, buses, trains ened by municipal level capacity-building efforts.116 The and some buildings for persons with disabilities. experience of Brazil will provide valuable knowledge about the ways in which the special needs of children Access is not only a matter concerning the physical with disabilities can best be addressed in such large- environment but involves enabling children with dis- scale, multidimensional programmes. abilities to overcome barriers to communication and day-to-day interaction with others. For example, sign These examples show that inclusive initiatives can language has been given the status of mother tongue potentially benefit excluded children collectively. under Finland’s new school legislation.120 In Central Separate budgets for different excluded groups and Southern Africa, Braille materials and the provi- of children – children living on the street, working sion of trained sign language interpreters are made children and so on – can result in the inefficient available by many governments in the region.121 distribution of resources and an overlap of provision. As regards entry into the workforce for young per- Inclusion has also been linked to fundamental sons with disabilities who have reached the age of ac- democratic processes, including participation in civil cess to employment, governments in many European society and in voting and local decision-making.117 and Asian countries have introduced legislation and Non-governmental organizations and international regulations that require employers to reserve a cer- organizations have the potential to act as catalysts tain quota of jobs for persons with disabilities. Other at the national level, raising awareness of disability countries have introduced anti-discrimination laws issues and bringing together diverse actors that make it unlawful for employers to discriminate on
33 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Box 7.2 Raising disability awareness in a successful pilot project for the inclusion of disabled the Maldives children in regular schools in Lesotho was also due in large measure to the initiative of the national From 2001 to 2002, the UNICEF ’First Steps’ Early organization of persons with disabilities. Given the Childhood campaign in the Maldives broadcast importance of these organizations, it is essential that messages about infants and young children all groups concerned with disability are represented, across radio and television three times a day, and that the needs of all and not just some children using local children and families as ’actors’. Each with disabilities are represented. week there was a different message, and sev- eral spots focused on disability, including early In countries where there are many organizations detection, inclusion and positive perceptions of representing different groups of persons with children with disabilities.i In one message, a new disabilities, the creation of an umbrella group mother is shown simple ways to test whether her empowered to speak for all has proved to be a baby has a visual or auditory impairment. In an- powerful vehicle for change. At the level of the UN, other, a group of older children use a parachute for example, such coordination is provided by the to play a game with their younger siblings. Some International Disability Council; the major international of the children have a disability, some do not. NGOs were also members of the ad hoc Committee that produced an agreed draft of the Convention on In 2004, an evaluation demonstrated a direct link the Rights of Persons with Disabilities. These NGOs between the campaign and changes in public are also members of the Expert Committee that attitudes and behaviours. It specifically empha- developed the Standard Rules and that continues to sized that the “significant achievement” of the advise the Special Rapporteur on Disability. campaign was an increased awareness of chil- dren with disabilities, children who had previous- Changing attitudes ly been all but invisible in the Maldives. It stated: “Social acceptance of mentally and physically The UN Special Rapporteur on Disability has been a challenged children improved and even child-to- critical advocate in favour of the rights of persons with child interactions became increasingly positive disabilities, and has stressed that changing attitudes following the campaign.” towards disability require ridding society of prejudice and discrimination and breaking down walls of super- Source: stition and ignorance. The media are one of the most i ’UNICEF Maldives 2002 Annual Report’ (internal docu- powerful tools to effect this change and have been ment), UNICEF, Maldives; Kolucki, Barbara, ’High Praise for Disability- Inclusive Early Childhood Campaign in successful in changing public attitudes in many coun- Maldives’ , Disability World, No. 26 (December 2004- tries and regions (see box 7.2 for an example from the February 2005),
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 34 Box 7.3 Monitoring human rights violations and conformity with relevant international standards, abuse against persons with disabilities are old enough to have access to employment – reduces the high cost to States in terms of benefit In November 2000, the Special Rapporteur payments and the loss of potential productivity. It for Disability convened an expert seminar also maximizes the contribution that persons with in Stockholm, in order to draft guidelines disabilities make once they are have a job in the for identifying and reporting human rights form of tax and social insurance payments, and their violations against persons with disabilities.i The contribution to the national economy by developing seminar established five distinct areas that must the consumer potential of persons with disabilities. be monitored, as follows: Although there are few studies addressing this is- sue, the potential economic gains in this regard are • National laws: these can appear to protect substantial. A study presented to the World Bank, human rights but may come to be used in for example, conservatively estimated that for 36 ways that create inequity and violate the countries of the Americas region, the productivity human rights of persons with disabilities. loss in 1993 due to exclusion of persons with dis- • Legal cases: these are just as important as abilities from the labour market amounted to ap- the written laws of a country: regardless of proximately US$625 billion.124 what a law says, in reality what matters is how a law is interpreted and enforced. Monitoring • Government programmes, services and practices: these normally have the greatest Irrespective of the degree of commitment of national impact on the daily lives of persons with governments to ensuring the rights of children with disabilities and their families but it is disabilities, it is important that national develop- often difficult to thoroughly review the ments are promoted and monitored through national effect of these programmes. The seminar independent human rights institutions such as com- recommended that special reporting missioners or a children’s ombudsperson. Proce- manuals be made available to disability dures must also be in place to assess human rights rights groups. violations. These institutions may be effectively sup- • Media representation of persons with ported by the involvement of bodies such as national disabilities: media events must be monitored disability coordinating committees or organizations to ensure they do not promote ideas and of persons with disabilities. The situation of children images that infringe upon the rights of with disabilities is now being monitored country by persons with disabilities. country through a variety of mechanisms. States • Individual cases of abuse: documenting and parties report on progress regarding the rights of reporting these cases raises awareness and children with disabilities in reporting to the Commit- support and makes it difficult for neglect and tee on the Rights of the Child, and these issues are human rights violations to go unnoticed and addressed in the comments made by the Committee unaddressed. on those reports.125 The CRC reporting process pro- vides a rich basis for understanding the development Source: of the rights of children with disabilities.126 i ’Measuring Progress from Rights on Paper to Rights in Reality’, from the report on the Almasa seminar, November 2000,
35 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 © UNICEF/HQ98-0860/Roger LeMoyne
Children’s rights can be promoted through the The governments of the Asia and Pacific region, regular reports of the UN system and other which has by far the largest number of persons organizations, including on progress towards the with disabilities in the world, joined forces with Millennium Goals. The Convention on the Rights NGOs in declaring 1993–2002 and 2003–2012 as of Persons with Disabilities will provide important Asian and Pacific Decades of Disabled Persons, mechanisms to monitor progress towards the establishing mutual initiatives and targets, goals attainment of their rights.128 and timeframes.129 These initiatives were developed within the work programme of the UN Economic and Identifying common goals creates synergies that Social Commission for Asia and the Pacific (ESCAP), make international efforts more effective. The 1981 which provided leadership and coordination across International Year of the Disabled represented a the entire region. critical watershed moment in relation to children with disabilities, with interest being mobilized Review of the work carried out under the Asian and around disability issues in UNICEF and other Pacific Decades has shown that a great deal can international agencies, and international NGOs such be achieved by well-planned regional collaborative as Rehabilitation International, stimulating a range of mechanisms including South–South cooperation to innovative efforts. Subsequently, following the end promote national commitment to disability action, of the Decade of Disabled Persons (1983–1992), mainstreaming of disability in national policies, an inter-agency working group consisting of WHO, establishing enabling legislation and enforcement UNESCO, the International Labour Organization (ILO) mechanisms, and strengthening statistics on and UNICEF was formed to consult on issues related disability.130 Close cooperation with bilateral to childhood disability. The working group came agencies, including the Government of Japan and together to build joint technical capacity through the the Government of Thailand, was instrumental development of training materials, workshops, and in achieving the gains that have been assessed guidelines with indicators for early detection, and by in empowering persons with disabilities, with an designing effective interventions, including promoting increase in public awareness in addition to the areas access to mainstream education and social services. mentioned above.131
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 36 Regionally relevant aims and targets have also been Progress depends on the ability to think beyond set by the African Decade of Persons with Disabilities traditional ’boxes’. This may mean thinking of (2001–2010),132 coordinated by the Pan African disability in the wider context of other marginalized Federation of the Disabled and six major international groups and joining forces to work for a more organizations of persons with disabilities, by the Arab inclusive society. A challenge for both international Decade for Persons with Disabilities (2004–2013),133 and national agencies concerns the extent to and most recently by the adoption of a Program of which they can create opportunities or strengthen Action for a Decade of the Americas for Persons with mechanisms for working together in a more holistic Disabilities (2006–2016).134 way to meet the needs of children, families, adults and communities. Where traditional administrative Materials developed for the regional decades, boundaries have been crossed in order to pool and lessons learned from them, can provide firm resources, persons with disabilities have benefited foundations for new initiatives in the context of from an approach that recognizes that their needs implementing the new UN Convention. At the do not correspond to the narrowly focused remits same time, this treaty is likely to provide additional of departments such as health, education, social impetus and mechanisms to monitor and evaluate services, income support and employment. achievements against objectives and targets at the regional level. At the local level, creative solutions to these problems have been found by the appointment of The European Union (EU) designated 2003 as the a key worker who supports the child particularly European Year of People with Disabilities, with at points of transition between home and school the aim of accelerating progress towards ensuring and between childhood and adulthood. At the equal rights for persons with disabilities in its national level, bodies responsible for initiating and member States. The year was organized by the coordinating policy for persons with disabilities European Commission in collaboration with the across the board have achieved a great deal in many European Disability Forum, an umbrella organization countries. Supplementing previous international representing more than 37 million persons with standards and commitments, the UN Convention disabilities in Europe. A major success of the year on the Rights of Persons with Disabilities provides was the increased awareness and concern for an ideal opportunity to develop more effective disability issues among the European public. The mechanisms to ensure that children with disabilities year also provided further incentives for member attain their full human rights in the years to come. States to look at new policy and legal developments towards achieving equal opportunities for persons with disabilities.135
In the recognition that concerns of persons with disabilities are often not included in the policies or development projects of the EU, an initiative on Breaking the Cycle of Poverty and Disability in Development Cooperation was launched in late 2005 with support from the EU. The Make Development Inclusive project represents a partnership among 12 European organizations, with the objective of promoting, in a coordinated manner, the mainstreaming of disability issues in the development cooperation policies of the member States of the European Union, EU institutions and relevant NGOs. Particular focus is given to building the capacity of public institutions and NGOs working in the development field, including organizations representing persons with disabilities.136
The development of much closer collaboration between the many international agencies working in this field presents a major challenge for the future. The needs of persons with disabilities cut across the mandates of different departments and agencies, at both national and international levels. In planning for the future, the voices of adults and children with disabilities and their families need to be much more clearly heard in the councils of the world.
37 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 8 CONCLUSIONS
The inclusion of children with disabilities is not simply responding to the needs of all children is not only a a charitable act. It is a process inspired by the promo- matter of justice; it is also an essential investment in tion of human rights that benefits the entire popula- the future of every society that is committed to be- tion of a country and provides a clear statement of coming or remaining democratic and participatory.138 a government’s commitment to all its citizens and to the principles of good governance. International The movement towards developing truly inclusive human rights instruments, including the Convention societies is already underway in many parts of the on the Rights of the Child and the Convention on the world. It is gaining strength from the Millennium Rights of Persons with Disabilities, provide critical Declaration and the Millennium Development policy imperatives, frameworks and guidance for the Goals, from other international commitments development of inclusive practices. such as Education for All and ‘A World Fit for Children‘, and above all from the Convention on Inclusion represents the recognition of fundamental the Rights of the Child and the new Convention on rights and freedoms of a group of children who have the Rights of Persons with Disabilities. With the been historically among the most marginalized. It necessary national and international commitment allows them to realize their full potential and frees to establishing more just and inclusive societies, them from the discrimination and prejudice that have this momentum will decisively grow. Day by day, kept them hidden and on the margins of society. Pro- diversity is coming to be understood as a resource moting inclusion requires mobilizing and increasing and more children and adults with disabilities are the capacity of those key individuals most influential being given the opportunity to contribute to the life and supportive for this process – especially the ex- of their family, community and country. tended family, teachers, community members, health staff and other carers.
Reliable and objective statistics are important to as- sist planning and resource allocation and to place children with disabilities more clearly on the map. Although the statistical databases necessary for this purpose require time to develop, planning and pro- gramming must move forward. Denying or delaying services to children with disability on the grounds that more data are needed is not acceptable. Plans, policies and budgets should be designed to allow changes and modifications, as additional data are made available over time.
This Innocenti Digest has emphasized a number of principles for advancing inclusion: consulting and listening to children with disabilities and their fami- lies themselves; adopting a life-cycle and integrated approach that responds to the evolving capacities of the child, and working with parents, other family members, peers and communities – as well as with service providers, policy-makers and key leaders.
Specific strategies based on these principles include the planned shift of children with disabilities from segregated, institutionalized care and enabling them to be included within their families, local schools and communities, with all the required support systems and services.
A strong message from the World Conference on Special Needs Education held in Salamanca in 1994 was that child-centred schools are a training ground for societies that respect the differences and dignity of all human beings.137 Developing educational sys- tems and learning opportunities that are capable of
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 38 NOTES
Editorial 13 Wolfensohn, J. D., ’Poor, Disabled and Shut Out’, 1 United Nations General Assembly, A World Fit Washington Post, 3 December 2002, p. A25. for Children, A/RES/S-27/2 (paragraphs 7(3) and 14 World Bank, Social Analysis and Disability: 21), United Nations, New York, 11 October 2002. A guidance note – incorporating disability-
39 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 21 Blomgren, Lars, ’UN Standard Rules for Persons 35 Committee on the Rights of the Child, Summary with Disabilities: Visions and tools in our work Record of the 418th Meeting, CRC/C/SR.418, for a society for all children’, delivered at ’Myths 6 October 1997. and Facts concerning Children with Disabilities’ 36 Groce, Nora Ellen, An Overview of Young People conference, Malmö, 9-11 December 1999; Living with Disabilities: Their needs and their proceedings published by Rädda Barnen, rights, UNICEF Programme Division (Working Stockholm, 2000. Paper Series), New York, 1999. 22 See
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 40 49 Mittler, Peter, personal communication, February 61 See, for example, Boukhari, H., ’Invisible Victims: 2007. See also Gunnar Dybwad in Bersani, H., Working with mothers of children with learning Responding to the Challenge: Current trends and disabilities’, in Abu-Habib, L., Gender and issues in developmental disabilities, Brookline Disability: Women’s experiences in the Middle Books, Cambridge, MA, 1999. East, Oxfam UK, 1997. 50 Rosenthal, Eric, et al., Children in Russia’s 62 Jones, Hazel, Disabled Children’s Rights, op. cit. Institutions: Human rights and opportunities for 63 United Nations Secretary-General’s Study on reform, Mental Disability Rights International, Violence against Children, Summary Report Washington, DC, 1999, p. iii,
41 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 78 Shared Care Network,
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 42 111 Fronczek, Valerie and Robert Yates, ’Project 130 UN Economic and Social Commission for Asia Review: Child and youth friendly communities and the Pacific, ’Review of National Progress in initiative’, Society for Children and Youth of BC, the Implementation of Targets and Strategies of 2003
43 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 LINKS1
UNITED NATIONS SYSTEM
Office of the United Nations High Commissioner International Classification ofF unctioning, for Human Rights (OHCHR) Disability and Health (ICF) 8-14 Avenue de la Paix, CH 1211 Geneva 10, Website: www.who.int/classifications/icf/site/ Switzerland icftemplate.cfm Tel: +41 22 917 9000; Fax: +41 22 917 9016 Email: [email protected]; Website: www.ohchr.org The ICF is a WHO classification of health and health related topics that describe body function, structures, OHCHR plays the leading role in the UN system activities and participation. This database has a on human rights issues, promotes international wealth of information on disabilities and proposes a cooperation for human rights, undertakes preventive new international definition of disability. It includes human rights action and carries out human rights some resources focusing on children. field activities and operations. The website provides access to all comments on States parties reports by International Labour Organization (ILO) the Committee on the Rights of the Child. 4, route des Morillons; CH-1211 Geneva 22, Switzerland United Nations Department of Economic and Tel: +41 22 799 6111; Fax: +41 22 798 8685 Social Affairs (UNDESA) Email: [email protected]; Website: www.ilo.org 2 United Nations Plaza, New York, NY, USA Tel: +1 212 963 1234; Fax: +1 212 963 1010 By formulating international labour standards in Email: [email protected]; Websites: www.un.org/esa; the form of Conventions and Recommendations, www.un.org/esa/socdev/enable the ILO seeks the promotion of social justice and internationally recognized human and labour rights. It The main objective of the Department's programme provides guidance on the management of disability is to promote broad-based and sustainable issues in the workplace through a Draft Code aimed development through a multidimensional at ensuring that persons with disabilities are treated and integrated approach to economic, social, equally and have equal opportunities at work. The environmental, population and gender related aspects code is intended to assist private and public sector of development. In relation to disabled people, the employers, employers’ organizations, workers’ Secretariat for the Convention on the Rights of organizations and public sector agencies responsible Persons with Disabilities within UNDESA Division for for national policy. Social Policy and Development works to assist the promotion of effective measures for the prevention United Nations Educational, Scientific and of disability and the realization of the goals of full Cultural Organization (UNESCO) participation of persons with disabilities in social life 7 Place de Fontenoy, 75007 Paris, France and of equality. Tel: +33 1 45 68 1813; Fax: +33 1 45 68 5626/28 Website: www.unesco.org/education The UN Enable website (above) brings together a wide range of resources directly relevant to persons As a leading partner in the Education for All (EFA) with disabilities, including the text of the Convention initiative, UNESCO works to meet the challenge on the Rights of Persons with Disabilities and of providing quality education for all, together with information concerning international and regional other multilateral agencies, governments, bilateral developments and resources. agencies, civil society and NGOs. UNESCO’s action in the field of inclusive education has been set United Nations Statistics Division – Human within the ’inclusive education’ framework adopted Functioning and Disability Section at the Salamanca Conference in 1994. The Inclusive Website: http://unstats.un.org/unsd/demographic/ Education branch of UNESCO has many materials, sconcerns/disability case studies, policies and numerous resources that pertain to the education of children with disabilities An online database of statistics on human functioning and special needs. and disability, with specific concentration on major concerns, citing sources of data, and providing a list of statistical products and databases.
1 The websites provided in this section are external sites.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 44 United Nations High Commissioner for Refugees OTHER INTERNATIONAL AGENCIES (UNHCR) PO 2500, Geneva 2, CH 1211, Switzerland World Bank Tel: +41 22739 8111 Disability and Development Team, 1818 H Street, Website: www.unhcr.org NW, Washington D.C., 20433, USA Website: www.worldbank.org/disability The Office of the United Nations High Commissioner for Refugees was established by the United Nations The World Bank’s mission is to fight poverty with General Assembly in 1950. The agency is mandated passion and professionalism for lasting results. to lead and coordinate international action to protect In the area of disability, it is working to ensure refugees and resolve refugee problems worldwide. full participation of persons with disabilities in its Its primary purpose is to safeguard the rights and development work, and gives special attention to well-being of refugees. It strives to ensure that persons with disabilities in this section. This resource everyone can exercise the right to seek asylum and provides a wealth of data for statistics, policies, and find safe refuge in another State, with the option to publications with specific concentration on children in return home voluntarily, integrate locally or to resettle specific areas. in a third country. UNHCR has worked to ensure the inclusion of children with disabilities in its fieldwork INTERNATIONAL AND REGIONAL and has published detailed training materials on this NON-GOVERNMENTAL ORGANIZATIONS subject for local facilitators. AND NETWORKS
Action on Disability and Development World Health Organization (WHO) Vallis House, 57 Vallis Road, Frome, CH 1211 Geneva 27, Switzerland Somerset BA11 3EG, UK Tel: +41 22 791 2111; Fax: +41 22 791 3111 Website: www.add.org.uk Email: [email protected]; Website: www.who.org DAR webpage: www.who.int/ncd/disability/ ADD works with a variety of groups, some programme.htm established as cross-disability organizations and others who come together due to the experience WHO provides worldwide guidance in the health of a common impairment or shared experience, field, sets global standards for health, cooperates for instance, people who are deaf, or women with governments to strengthen health programmes with disabilities. The organizations range from and develops appropriate health technology, small groups at village or local level, to larger, information and standards. Its programme on representational national federations or unions, Disability and Rehabilitation (DAR) aims to enhance which are also linked into regional and international the quality of life and equality of opportunities for networks of people with disabilities. ADD supports all persons with disabilities by promoting equal groups of people with disabilities by building access to health and medical care, social services up their confidence in their own worth, abilities and rehabilitation services that can reduce limits on and rights; helping them take control of their activity. DAR provides a forum for the international lives; campaigning, advocating and lobbying for exchange of information and experiences, with the equal rights; helping them run more sustainable, aim of identifying new ideas, successful country democratic, efficient and inclusive organizations; models and useful strategies, and to discuss supporting them to set up self-help initiatives to their application in other settings. WHO has improve their standards of living. also developed an International Classification of Functioning, Disability and Health (ICF) – see the site AIFO (Associazone Italiana Amici di Raoul Follerau) listed above. Via Borselli 4, I 40135 Bologna, Italy Tel: +39 051 433402; Fax: +39 051 434046 Websites: www.aifo.it/English; www.aifo.it
The activities of AIFO are focused on supporting persons affected by leprosy and persons with disabilities through integrated development projects, with particular attention to the poorest and most vulnerable groups. AIFO also promotes development education in Europe for a better understanding of the causes underlying poverty and underdevelopment in connection with the North–South relationship. This organization provides various resources on children with disabilities and leprosy in some of the least developed areas of the world.
45 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Amnesty International Center for International Rehabilitation Website: www.amnesty.org/ 333 East Huron Street, Suite 225; Chicago, IL 60611, USA Amnesty International (AI) is a worldwide movement Tel: +1 312 926 0030; Fax: +1 312 926 7662 of people who campaign for internationally Email: [email protected]; Website: recognized human rights. AI’s vision is of a world www.cirnetwork.org/index.cfm in which every person enjoys all of the human rights enshrined in the Universal Declaration of The Center for International Rehabilitation is a not- Human Rights and other international human rights for-profit organization that develops technologies standards. In pursuit of this vision, AI’s mission is to and programmes to help persons with disabilities undertake research and action focused on preventing worldwide reach their full potential. The CIR and ending grave abuses of the rights to physical conducts fieldwork, research, training and education and mental integrity, freedom of conscience and around the globe. Research by the CIR tries to find expression, and freedom from discrimination, within solutions to daily problems encountered by persons the context of its work to promote all human rights. with disabilities in some of the poorest countries in AI has a large database on various reports and articles the world. that pertain to children with disabilities. Danish Council for Disabled People (DSI) Better Care Network Klovervej 10B, 2650 Hvidovre, Denmark Website: www.crin.org/bcn/index.asp Websites: www.disability.dk; http://www.handicap. dk/english The Better Care Network brings together organizations and individuals concerned about DSI is active in Ghana, India, Kosovo, Malawi, Nepal, children without adequate family care. BCN Nicaragua, Philippines, South Africa, Uganda and facilitates active information exchange, collaboration Zimbabwe. The website contains information on and advocacy on issues such as the prevention disability in developing countries to support NGOs, of separation and abandonment of children; the governments and others working in the field. The site development of family and community based care is a dynamic library to which the newest documents options for children who cannot be cared for by their and information are added. parents; and international and national standards for all forms of care for children without adequate DCDD (Dutch Coalition on Disability and family care. The website includes a dedicated section Development) on children with disabilities and a list of resources PO Box 3356, NL 3502 GJ Utrecht, Netherlands with a special focus on the situation of children with Website: www.dcdd.nl disabilities in institutional care. DCDD's mission is to improve the position of people CBM (Christoffel Blindenmission) with disabilities. DCDD takes the human rights Nibelungenstrasse 124, D 64625 Bensheim, perspective as its point of departure and works on Germany these issues for people in developing countries and Website: www.cbm.org countries in Central and Eastern Europe. Means for DCDD are awareness raising and policy advocacy, CBM Christian Blind Mission/Christoffel- primarily applied in the Netherlands and Europe. Blindenmission is one of the leading international development agencies for persons with disabilities. Disability Awareness in Action It supports the provision of services to persons 11 Belgrave Road, London SW1V 1RB, UK with visual disabilities as well as persons with Telephone: +44 207 834 0477; Fax: +44 207 821 9539 other disabilities in more than 1,000 projects in Email: [email protected]; Website: www.daa.org.uk 113 developing countries. CBM assists the world's poorest persons with disabilities and those at risk Disability Awareness in Action is a collaborative of disability regardless of their nationality, sex project between different organizations such as or religion. Disabled Peoples’ International, IMPACT, Inclusion International and the World Federation of the Deaf. It was established to provide a network for the exchange of information and experience between people with disabilities and their representative organizations, to support the self-advocacy of people with disabilities and promote their human rights. DAA’s efforts are particularly focused on people in developing countries.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 46 Disabled Peoples’ International FIDIDA (Finnish Disabled People’s International 101-7 Evergreen Place, Winnipeg, Development Association) Manitoba R3L 2T3, Canada Aleksanderink 48 A5 krs, 00100 Helsinki, Finland Tel: +1 204 287 8010; Fax: +1 204 453 1367 Website: www.fidida.fi Email: [email protected]; Website: www.dpi.org Finnish Disabled People’s International Development DPI is a human rights organization with active Association, FIDIDA, was established in 1989 in membership in over 120 countries around the Helsinki, Finland. It was formed by seven Finnish world, over half of which are developing nations. organizations for people with disabilities that, apart It is committed to ensuring that people with from their work within the disability sector in Finland, disabilities across the world are able to achieve full were interested in working with organizations for integration, self-determination and equalization of people with disabilities in developing countries. opportunity in structures and services that are at Today, these organizations have projects in Asia, the heart of every community. Specifically, DPI is Africa, South America and Eastern Europe. Since dedicated to the promotion and protection of the 2004, FIDIDA has cooperated with the Ministry for human rights of people with disabilities and the Foreign Affairs of Finland in the assessment of all provision of information and training to facilitate their new disability project applications by Finnish non- empowerment. The organization has also prepared governmental organizations to the Ministry. a toolkit on implementing the Convention on the Rights of Persons with Disabilities. This useful guide is written from a consumer perspective. It is available GLADNET Association (Global Applied at http://www.icrpd.net/implementation/en/toolkit/ Disability Research and Information Network on section1.htm. Employment and Training) Box 66043, University of Calgary, Calgary, Alberta, T2N 4T7, Canada European Agency for Development in Special Tel: +1 403 228 2227; Fax: +1 403 228 2207 Needs Education Email: [email protected]; Website: www.gladnet.org Ostre Stationsvej 33, DK 5000, Odense C, Denmark Tel: +45 64 410020; Fax: +45 64 41 2303 The GLADNET Association refers to the Global Email: [email protected]; Website: Applied Disability Research and Information Network. www.european-agency.org It is an international not-for-profit organization affiliated with the International Labour Organization’s This is an independent, self-governing European Disability and Work Programme. The Network brings agency established by the ministries of Education together research centres, universities, enterprises, in European Union member countries to act as government departments, trade unions, and a platform for collaboration in the field of special organizations of and for persons with disabilities. needs education. It offers member countries a Their common goal is to advance competitive unique opportunity to exchange knowledge and employment and training opportunities for persons experience in such a way that quality in special needs with disabilities. education is promoted. There is an extensive range of publications within and across EU countries. Handicap International ERAC, 14 avenue Berthelot, 69631 Lyon, Cedex 07, France European Disability Forum Email for UK contact point: [email protected] Website: www.edf-feph.org/ Website: www.handicap-international.org
The European Disability Forum exists to represent Handicap International is a major NGO with disabled people in dialogue with the European development projects in many countries. It is Union and other European authorities. Its mission particularly concerned with support to persons with is to promote equal opportunities for people with disabilities in conflict and emergency situations disabilities and to ensure that citizens with disabilities and with the campaign against landmines and have full access to fundamental and human unexploded ordnance. rights through their active involvement in policy development and implementation in the European Union. The membership includes the national councils of people with disabilities from the 27 European Union countries, plus Norway and Iceland, representing the national disability movements. In addition, there is a broad range of organizations representing different disability groups and campaign interests in Europe.
47 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Healthlink Worldwide International Save the Children Alliance Cityside, 40 Adler Street, London E1 1EE, UK 275-281 King Street, London, W6 9LZ, UK Websites: www.healthlink.org.uk/index.html; Tel: +44 20 8748 2554; Fax: +44 20 8237 8000 www.healthlink.org.uk; http://www.healthlink.org.uk/ Email: [email protected]; projects/disability/articles02.html Website: www.savethechildren.net/
Healthlink works with over 50 partners worldwide, The International Save the Children Alliance is mobilizing innovative knowledge and communication the world’s largest independent children’s rights processes; empowering people to voice their health organization with 29 members working in over needs and have those voices heard. In addition 120 countries. Save the Children works for a world to disability, it focuses on HIV and AIDS, malaria that respects and values each child, that listens to and tuberculosis, community health, advocacy and every child, and where all children have hope and information technology. opportunity. Save the Children works to overcome barriers of entrenched attitudes and discrimination Inclusion International that face children with impairments, even in those The Rix Centre, University of East London, 4-6 areas where there is willingness to provide an University Way London E16 2RD, UK education to all children. Tel: +44 208 223 7709 ; Fax: +44 208 223 7411 Email: [email protected]; Website: Landmine Survivors Network www.inclusion-international.org/ 11 rue de Cornovan, 1201 Geneva, Switzerland Tel.: +41 22 732 28 41 Inclusion International (II) is a global federation of Website: www.landminesurvivors.org family-based organizations advocating for the human rights of people with intellectual disabilities and their LSN works across the globe to help survivors secure families worldwide. It represents over 200 member the services they need to help them reclaim their federations in 115 countries throughout five regions, lives. Aiding people injured in landmine accidents Middle East and North Africa, Europe, Africa and the helps them move from being victims to being Indian Ocean, the Americas and Asia Pacific. survivors and fully participating citizens in their communities. First and foremost, LSN helps ensure International Deaf Children’s Society (IDCS) that survivors have the medical care needed to regain 15 Dufferin Street, London EC1Y 8UR, UK and maintain their health. Tel: +44 20 7490 8656 Website: www.ndcs.info Leonard Cheshire International 30 Millbank, London SW1P 4QD, UK The IDCS is the international development wing of Website: www.lcint.org the National Deaf Children’s society of the UK, and provides a resources library for search content. The LCI is a leading non-governmental organization website contains a long list of recent articles and with 60 years of achievement in promoting positive papers, and a comprehensive search engine. It has attitudes to disability and empowering persons with information primarily on Europe but also some useful disabilities. LCI works with organizations for persons resources on Africa and East Asia. with disabilities, international organizations, national governments and local communities to change International Disability and Development attitudes to ability and provide services to people Consortium (IDDC) around the world. c/o Handicap International, 5 Station Hill, Farnham, Surrey GU9 8AA, UK Light for the World Tel: +44 1252 821 429; Fax: +44 1252 821428 Darnautgasse 13/5, A 1120 Vienna, Austria Email: [email protected]; Tel: +43 1810 13006 Website: www.iddc.org.uk Websites: www.light-for-the-world.org; www.licht-fuer-die-welt.at (German) IDDC is a self-managing group currently consisting of 16 non-government organizations supporting Light for the World - Christoffel Development disability and development work in over 100 Cooperation is an Austrian non-governmental countries globally. IDDC's aim is to more effectively development organization committed to helping and efficiently promote the rights of people with people who have eye diseases, are blind or have disabilities through collaboration and the sharing other disabilities in underprivileged regions, of information and expertise. To achieve this aim, irrespective of gender, origin, ethnicity or religion. IDDC believes development policy and practice should be inclusive.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 48 Mental Disability Rights International Save the Children Fund (UK) 156 15th Street NW, Suite 1001 Washington, DC 17 Grove Lane, London SE5 8 RD, UK 20005, USA Tel: +44 20 7703 5400; Fax: +44 20 7703 2278 Tel: +1 202 296 0800; Fax: +1 202 728 3053 Email: [email protected]; Website: Email: [email protected]; Website: www.mdri.org/ www.savethechildren.org.uk
Established in 1993 as a joint project of the Bazelon SCF works in 70 countries, conducting research on Center for Mental Health Law and American children’s issues, supporting practical projects that University's Center for Human Rights and involve children and their families and advocating for Humanitarian Law, MDRI documents conditions, changes to benefit children worldwide. SCF is very publishes reports on human rights enforcement active in the promotion of the rights of children with and promotes international oversight of the rights disabilities. SCF is a member of the International of people with mental disabilities. Drawing on the Save the Children Alliance. skills and experience of attorneys, mental health professionals, human rights advocates, people with Sense (UK) mental disabilities and their family members, MDRI 11-13 Clifton Terrace, Finsbury Park, London N4 3SR, UK trains and supports advocates seeking legal and Tel: +44 845 0060 service system reform and assists governments to Website: www.sense.org.uk develop laws and policies to promote community integration and human rights enforcement for people Sense is the UK's largest organization for children with mental disabilities. and adults who are deaf-blind or have associated disabilities. It has a database of news articles, NAD (Norwegian Association for the Disabled) statistics and other various resources concentrating PO Box 9217, Gronland, N0134, Norway on issues specifically on children who are deaf-blind. Websites: http://www.atlas-alliansen.no/index. asp?id=26120 (English); www.atlas-alliansen.no SHIA (Swedish Organization of Disabled Persons) Box 4060, S 102 61 Stockholm, Sweden The Atlas Alliance is the umbrella organization for the Email: [email protected]; Websites: http://www.shia.se/ development work of disabled people’s organizations index.php?l=en&p=index (English); www.shia.se (DPOs) in Norway. It consists of 14 member organiza- (sites currently under development) tions and two affiliated organizations. SHIA is a major development organization fully Pan African Federation of the Disabled committed to inclusion, with programmes Website: www.dpiafro.mr/index.htm and activities in many countries. It focuses on strengthening local and national organizations of PAFOD is a continental organization of disabled persons with disabilities in developing countries. peoples’ organizations which constitutes 53 national assemblies organized within five subregional Sightsavers International federations – WAFOD, SAFOD, CAFOD, EAFOD, Grosvenor Hall, Bolnore Road, Haywards Heath, NAFOD – representing West, South, Central, East West Sussex RH16 4BX, UK and North Africa. Its mandate is to create a network Website: www.sightsavers.org of organizations for persons with disabilities across the continent. Through the training of leaders and Sightsavers works to combat blindness in developing the building of organizational capacities, PAFOD countries, restoring sight through specialist treatment works toward the strengthening of human rights and and eye care. It also supports people who are the equalization of opportunities for persons living irreversibly blind by providing education, counselling with disabilities. and training, with particular attention to those living in poverty in some of the world's poorest countries. RI (Rehabilitation International) 25 East 21 Street, New York, NY 10010, USA World Vision Tel.: +1 212 420 1500; Fax: +1 212 505 0871 Opal Drive, Fox Mine, Milton Keynes, MK15 0ZR, UK Email: [email protected]; Website: www.riglobal.org Tel: +44 1908 841 049 Website: www.worldvision.org.uk Rehabilitation International (RI) is a worldwide network of persons with disabilities, service providers World Vision works to make a serious and and government agencies working together to sustainable impact on poverty and its causes, improve the quality of life for people with disabilities especially as they affect children. It is committed to and their families. Founded in 1922, it now has more long-term change, which means connecting people. than 700 member organizations in over 80 nations. Its activities include access to inclusive education for children with disabilities and gender equality for women with disabilities.
49 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 ADDITIONAL RESOURCES Source International Information Support Centre Website: www.asksource.info/res_library/ Child Rights Information Network (CRIN) disability.htm Website: www.crin.org Source is a collaborative venture of the Centre for The Child Rights Information Network (CRIN) is a International Health and Development (formerly global network that disseminates information about CICH), Healthlink Worldwide, Handicap International the Convention on the Rights of the Child and child and the Exchange programme. The website has rights among non-governmental organizations, been formed from a merger of the resource centres UN agencies, intergovernmental organizations, of CICH and Healthlink Worldwide. It is designed educational institutions and other child rights experts. to meet the information needs of individuals and The network is supported by and receives funding organizations working in health, disability and from UNICEF, Rädda Barnen, Save the Children UK development worldwide, including health workers, and the International Save the Children Alliance. researchers and students, non-governmental and Extensive information, resources and publications are governmental organizations, and organizations available on this website. for persons with disabilities. Source has a unique collection of around 25,000 health and disability Enabling Education Network information resources, including books, journals, Centre for Educational Inclusion and Support, manuals, reports, posters, CD-ROMs, websites University of Manchester, M13 9PL, UK and organizations. Many materials are from Email: [email protected]; developing countries and include both published and Website: www.eenet.org.uk unpublished literature.
EENET was initiated by Save the Children UK, in World Institute on Disability partnership with UK and international 510 16th Street, Suite 100, Oakland, CA 94612, USA non-governmental organizations and research Website: www.wid.org institutions. It is committed to prioritizing the needs of countries, organizations and individuals with The World Institute of Disability is a non-profit, limited access to basic information and resources. research, public policy and advocacy centre, A regular newsletter is produced and the website dedicated to promoting civil rights and full societal contains a wide range of materials and resources on inclusion of persons with disabilities. WID focuses on inclusive education and related issues throughout four areas: employment and economic development; the world. An interactive CD presents a wide range accessible health care and Personal Assistance of relevant information for diverse audiences, Service; inclusive technology design; international bringing together the main themes within inclusive disability development, including work on inclusive education: parents, young people’s voices, teacher education in Eastern Europe. education, policy development, classroom practice, and the use of images.
Roeher Institute Kinsmen Building, York University, Toronto, Ontario, M3J 1P3, Canada Tel: +1 416 661 9611; Fax: +1 416 661 5701 Email: [email protected]; Website: www.roeher.ca/
The Roeher Institute is a leading policy-research and development organization. Its task is to generate knowledge, information and skills to secure the inclusion, citizenship, human rights and equality of people with intellectual and other disabilities.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 50 Convention on the Rights of Persons with Disabilities and Optional Protocol to the Convention on the Rights of Persons with Disabilities
Convention on the Rights of Persons with plans, programmes and actions at the national, Disabilities regional and international levels to further equalize Preamble opportunities for persons with disabilities,
The States parties to the present Convention, (g) Emphasizing the importance of mainstreaming disability issues as an integral part of relevant (a) Recalling the principles proclaimed in the Charter strategies of sustainable development, of the United Nations which recognize the inherent dignity and worth and the equal and inalienable rights (h) Recognizing also that discrimination against any of all members of the human family as the foundation person on the basis of disability is a violation of the of freedom, justice and peace in the world, inherent dignity and worth of the human person,
(b) Recognizing that the United Nations, in the (i) Recognizing further the diversity of persons with Universal Declaration of Human Rights and in the disabilities, International Covenants on Human Rights, has proclaimed and agreed that everyone is entitled to (j) Recognizing the need to promote and protect the all the rights and freedoms set forth therein, without human rights of all persons with disabilities, including distinction of any kind, those who require more intensive support,
(c) Reaffirming the universality, indivisibility, (k) Concerned that, despite these various instruments interdependence and interrelatedness of all human and undertakings, persons with disabilities continue rights and fundamental freedoms and the need for to face barriers in their participation as equal persons with disabilities to be guaranteed their full members of society and violations of their human enjoyment without discrimination, rights in all parts of the world,
(d) Recalling the International Covenant on Economic, (l) Recognizing the importance of international Social and Cultural Rights, the International Covenant cooperation for improving the living conditions of on Civil and Political Rights, the International persons with disabilities in every country, particularly Convention on the Elimination of All Forms of Racial in developing countries, Discrimination, the Convention on the Elimination of All Forms of Discrimination against Women, (m) Recognizing the valued existing and potential the Convention against Torture and Other Cruel, contributions made by persons with disabilities to the Inhuman or Degrading Treatment or Punishment, overall well-being and diversity of their communities, the Convention on the Rights of the Child, and the and that the promotion of the full enjoyment by International Convention on the Protection of the persons with disabilities of their human rights and Rights of All Migrant Workers and Members of Their fundamental freedoms and of full participation by Families, persons with disabilities will result in their enhanced sense of belonging and in significant advances in the (e) Recognizing that disability is an evolving concept human, social and economic development of society and that disability results from the interaction and the eradication of poverty, between persons with impairments and attitudinal and environmental barriers that hinders their full and (n) Recognizing the importance for persons effective participation in society on an equal basis with disabilities of their individual autonomy and with others, independence, including the freedom to make their own choices, (f) Recognizing the importance of the principles and policy guidelines contained in the World Programme (o) Considering that persons with disabilities of Action concerning Disabled Persons and in the should have the opportunity to be actively involved Standard Rules on the Equalization of Opportunities in decision-making processes about policies and for Persons with Disabilities in influencing the programmes, including those directly concerning promotion, formulation and evaluation of the policies, them,
51 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 (p) Concerned about the difficult conditions faced by (y) Convinced that a comprehensive and integral persons with disabilities who are subject to multiple international convention to promote and protect or aggravated forms of discrimination on the basis of the rights and dignity of persons with disabilities race, colour, sex, language, religion, political or other will make a significant contribution to redressing opinion, national, ethnic, indigenous or social origin, the profound social disadvantage of persons with property, birth, age or other status, disabilities and promote their participation in the civil, political, economic, social and cultural spheres (q) Recognizing that women and girls with disabilities with equal opportunities, in both developing and are often at greater risk, both within and outside developed countries, the home of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, Have agreed as follows:
(r) Recognizing that children with disabilities Article 1 should have full enjoyment of all human rights Purpose and fundamental freedoms on an equal basis with other children, and recalling obligations to that end The purpose of the present Convention is to undertaken by States parties to the Convention on promote, protect and ensure the full and equal the Rights of the Child, enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to (s) Emphasizing the need to incorporate a gender promote respect for their inherent dignity. perspective in all efforts to promote the full enjoyment of human rights and fundamental Persons with disabilities include those who have freedoms by persons with disabilities, long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers (t) Highlighting the fact that the majority of persons may hinder their full and effective participation in with disabilities live in conditions of poverty, and in society on an equal basis with others. this regard recognizing the critical need to address the negative impact of poverty on persons with Article 2 disabilities, Definitions
(u) Bearing in mind that conditions of peace and For the purposes of the present Convention: security based on full respect for the purposes and principles contained in the Charter of the United “Communication” includes languages, display of text, Nations and observance of applicable human rights Braille, tactile communication, large print, accessible instruments are indispensable for the full protection multimedia as well as written, audio, plain-language, of persons with disabilities, in particular during armed human-reader and augmentative and alternative conflicts and foreign occupation, modes, means and formats of communication, including accessible information and communication (v) Recognizing the importance of accessibility to the technology; physical, social, economic and cultural environment, to health and education and to information and “Language” includes spoken and signed languages communication, in enabling persons with disabilities and other forms of non spoken languages; to fully enjoy all human rights and fundamental freedoms, “Discrimination on the basis of disability’” means any distinction, exclusion or restriction on the basis of (w) Realizing that the individual, having duties to disability which has the purpose or effect of impairing other individuals and to the community to which he or nullifying the recognition, enjoyment or exercise, or she belongs, is under a responsibility to strive on an equal basis with others, of all human rights for the promotion and observance of the rights and fundamental freedoms in the political, economic, recognized in the International Bill of Human Rights, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable (x) Convinced that the family is the natural and accommodation; fundamental group unit of society and is entitled to protection by society and the State, and that persons “Reasonable accommodation” means necessary with disabilities and their family members should and appropriate modification and adjustments not receive the necessary protection and assistance imposing a disproportionate or undue burden, where to enable families to contribute towards the full needed in a particular case, to ensure to persons with and equal enjoyment of the rights of persons with disabilities the enjoyment or exercise on an equal disabilities, basis with others of all human rights and fundamental freedoms;
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 52 “Universal design” means the design of products, (e) To take all appropriate measures to eliminate environments, programmes and services to be discrimination on the basis of disability by any usable by all people, to the greatest extent possible, person, organization or private enterprise; without the need for adaptation or specialized design. “Universal design” shall not exclude assistive (f) To undertake or promote research and devices for particular groups of persons with development of universally designed goods, services, disabilities where this is needed. equipment and facilities, as defined in article 2 of the present Convention, which should require the Article 3 minimum possible adaptation and the least cost to General principles meet the specific needs of a person with disabilities, to promote their availability and use, and to promote The principles of the present Convention shall be: universal design in the development of standards and guidelines; (a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, (g) To undertake or promote research and and independence of persons; development of, and to promote the availability and use of new technologies, including information and (b) Non-discrimination; communications technologies, mobility aids, devices and assistive technologies, suitable for persons (c) Full and effective participation and inclusion in with disabilities, giving priority to technologies at an society; affordable cost;
(d) Respect for difference and acceptance of persons (h) To provide accessible information to persons with with disabilities as part of human diversity and disabilities about mobility aids, devices and assistive humanity; technologies, including new technologies, as well as other forms of assistance, support services and (e) Equality of opportunity; facilities;
(f) Accessibility; (i) To promote the training of professionals and staff working with persons with disabilities in the rights (g) Equality between men and women; recognized in this Convention so as to better provide the assistance and services guaranteed by those (h) Respect for the evolving capacities of children rights. with disabilities and respect for the right of children with disabilities to preserve their identities. 2. With regard to economic, social and cultural rights, each State party undertakes to take measures to Article 4 the maximum of its available resources and, where General obligations needed, within the framework of international cooperation, with a view to achieving progressively 1. States parties undertake to ensure and the full realization of these rights, without prejudice promote the full realization of all human rights and to those obligations contained in the present fundamental freedoms for all persons with disabilities Convention that are immediately applicable according without discrimination of any kind on the basis of to international law. disability. To this end, States parties undertake: 3. In the development and implementation of (a) To adopt all appropriate legislative, administrative legislation and policies to implement the present and other measures for the implementation of the Convention, and in other decision-making rights recognized in the present Convention; processes concerning issues relating to persons with disabilities, States parties shall closely consult (b) To take all appropriate measures, including with and actively involve persons with disabilities, legislation, to modify or abolish existing laws, including children with disabilities, through their regulations, customs and practices that constitute representative organizations. discrimination against persons with disabilities; 4. Nothing in the present Convention shall affect (c) To take into account the protection and promotion any provisions which are more conducive to the of the human rights of persons with disabilities in all realization of the rights of persons with disabilities policies and programmes; and which may be contained in the law of a State party or international law in force for that State. (d) To refrain from engaging in any act or practice that There shall be no restriction upon or derogation from is inconsistent with the present Convention and to any of the human rights and fundamental freedoms ensure that public authorities and institutions act in recognized or existing in any State party to the conformity with the present Convention; present Convention pursuant to law, conventions,
53 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 regulation or custom on the pretext that the present 3. States parties shall ensure that children with Convention does not recognize such rights or disabilities have the right to express their views freedoms or that it recognizes them to a lesser freely on all matters affecting them, their views being extent. given due weight in accordance with their age and maturity, on an equal basis with other children, and 5. The provisions of the present Convention shall to be provided with disability and age-appropriate extend to all parts of federal states without any assistance to realize that right. limitations or exceptions. Article 8 Article 5 Awareness-raising Equality and non-discrimination 1. States parties undertake to adopt immediate, 1. States parties recognize that all persons are equal effective and appropriate measures: before and under the law and are entitled without any discrimination to the equal protection and equal (a) To raise awareness throughout society, including benefit of the law. at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of 2. States parties shall prohibit all discrimination on persons with disabilities; the basis of disability and guarantee to persons with disabilities equal and effective legal protection against (b) To combat stereotypes, prejudices and harmful discrimination on all grounds. practices relating to persons with disabilities, including those based on sex and age, in all areas of 3. In order to promote equality and eliminate life; discrimination, States parties shall take all appropriate steps to ensure that reasonable accommodation is (c) To promote awareness of the capabilities and provided. contributions of persons with disabilities.
4. Specific measures which are necessary to 2. Measures to this end include: accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination (a) Initiating and maintaining effective public under the terms of the present Convention. awareness campaigns designed:
Article 6 (i) To nurture receptiveness to the rights of persons Women with disabilities with disabilities; (ii) To promote positive perceptions and greater social 1. States parties recognize that women and girls with awareness towards persons with disabilities; disabilities are subject to multiple discrimination, and (iii) To promote recognition of the skills, merits and in this regard shall take measures to ensure the full abilities of persons with disabilities, and of their and equal enjoyment by them of all human rights and contributions to the workplace and the labour market; fundamental freedoms. (b) Fostering at all levels of the education system, 2. States parties shall take all appropriate measures including in all children from an early age, an attitude to ensure the full development, advancement of respect for the rights of persons with disabilities; and empowerment of women, for the purpose of guaranteeing them the exercise and enjoyment of (c) Encouraging all organs of the media to portray the human rights and fundamental freedoms set out persons with disabilities in a manner consistent with in the present Convention. the purpose of the present Convention;
Article 7 (d) Promoting awareness-training programmes Children with disabilities regarding persons with disabilities and the rights of persons with disabilities. 1. States parties shall take all necessary measures to ensure the full enjoyment by children with disabilities Article 9 of all human rights and fundamental freedoms on an Accessibility equal basis with other children. 1. To enable persons with disabilities to live 2. In all actions concerning children with disabilities, independently and participate fully in all aspects of the best interests of the child shall be a primary life, States parties shall take appropriate measures consideration. to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 54 and services open or provided to the public, both in Article 11 urban and in rural areas. These measures, which shall Situations of risk and humanitarian emergencies include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia: States parties shall take, in accordance with their obligations under international law, including (a) Buildings, roads, transportation and other indoor international humanitarian law and international and outdoor facilities, including schools, housing, human rights law, all necessary measures to medical facilities and workplaces; ensure the protection and safety of persons with disabilities in situations of risk, including situations of (b) Information, communications and other services, armed conflict, humanitarian emergencies and the including electronic services and emergency services. occurrence of natural disasters.
2. States parties shall also take appropriate measures Article 12 to: Equal recognition before the law
(a) Develop, promulgate and monitor the 1. States parties reaffirm that persons with implementation of minimum standards and guidelines disabilities have the right to recognition everywhere for the accessibility of facilities and services open or as persons before the law. provided to the public; 2. States parties shall recognize that persons with (b) Ensure that private entities that offer facilities and disabilities enjoy legal capacity on an equal basis with services which are open or provided to the public others in all aspects of life. take into account all aspects of accessibility for persons with disabilities; 3. States parties shall take appropriate measures to provide access by persons with disabilities to the (c) Provide training for stakeholders on accessibility support they may require in exercising their legal issues facing persons with disabilities; capacity.
(d) Provide in buildings and other facilities open to 4. States parties shall ensure that all measures that the public signage in Braille and in easy to read and relate to the exercise of legal capacity provide for understand forms; appropriate and effective safeguards to prevent abuse in accordance with international human rights (e) Provide forms of live assistance and law. Such safeguards shall ensure that measures intermediaries, including guides, readers and relating to the exercise of legal capacity respect professional sign language interpreters, to facilitate the rights, will and preferences of the person, are accessibility to buildings and other facilities open to free of conflict of interest and undue influence, the public; are proportional and tailored to the person’s circumstances, apply for the shortest time possible (f) Promote other appropriate forms of assistance and and are subject to regular review by a competent, support to persons with disabilities to ensure their independent and impartial authority or judicial body. access to information; The safeguards shall be proportional to the degree to which such measures affect the person’s rights and (g) Promote access for persons with disabilities to interests. new information and communications technologies and systems, including the Internet; 5. Subject to the provisions of this article, States parties shall take all appropriate and effective (h) Promote the design, development, production measures to ensure the equal right of persons with and distribution of accessible information and disabilities to own or inherit property, to control their communications technologies and systems at an own financial affairs and to have equal access to bank early stage, so that these technologies and systems loans, mortgages and other forms of financial credit, become accessible at minimum cost. and shall ensure that persons with disabilities are not arbitrarily deprived of their property. Article 10 Right to life Article 13 Access to justice States parties reaffirm that every human being has the inherent right to life and shall take all necessary 1. States parties shall ensure effective access to measures to ensure its effective enjoyment by justice for persons with disabilities on an equal persons with disabilities on an equal basis with basis with others, including through the provision of others. procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and
55 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 indirect participants, including as witnesses, in all 2. States parties shall also take all appropriate legal proceedings, including at investigative and other measures to prevent all forms of exploitation, preliminary stages. violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and 2. In order to help to ensure effective access to support for persons with disabilities and their families justice for persons with disabilities, States parties and caregivers, including through the provision of shall promote appropriate training for those working information and education on how to avoid, recognize in the field of administration of justice, including and report instances of exploitation, violence and police and prison staff. abuse. States parties shall ensure that protection services are age-, gender- and disability-sensitive. Article 14 Liberty and security of the person 3. In order to prevent the occurrence of all forms of exploitation, violence and abuse, States parties shall 1. States parties shall ensure that persons with ensure that all facilities and programmes designed disabilities, on an equal basis with others: to serve persons with disabilities are effectively monitored by independent authorities. (a) Enjoy the right to liberty and security of person; 4. States parties shall take all appropriate measures (b) Are not deprived of their liberty unlawfully or to promote the physical, cognitive and psychological arbitrarily, and that any deprivation of liberty is in recovery, rehabilitation and social reintegration of conformity with the law, and that the existence of persons with disabilities who become victims of any a disability shall in no case justify a deprivation of form of exploitation, violence or abuse, including liberty. through the provision of protection services. Such recovery and reintegration shall take place in an 2. States parties shall ensure that if persons with environment that fosters the health, welfare, self- disabilities are deprived of their liberty through respect, dignity and autonomy of the person and any process, they are, on an equal basis with takes into account gender- and age-specific needs. others, entitled to guarantees in accordance with international human rights law and shall be treated 5. States parties shall put in place effective legislation in compliance with the objectives and principles of and policies, including women- and child-focused this Convention, including by provision of reasonable legislation and policies, to ensure that instances of accommodation. exploitation, violence and abuse against persons with disabilities are identified, investigated and, where Article 15 appropriate, prosecuted. Freedom from torture or cruel, inhuman or degrading treatment or punishment Article 17 Protecting the integrity of the person 1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. Every person with disabilities has a right to respect In particular, no one shall be subjected without for his or her physical and mental integrity on an his or her free consent to medical or scientific equal basis with others. experimentation. Article 18 2. States parties shall take all effective legislative, Liberty of movement and nationality administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with 1. States parties shall recognize the rights of persons others, from being subjected to torture or cruel, with disabilities to liberty of movement, to freedom inhuman or degrading treatment or punishment. to choose their residence and to a nationality, on an equal basis with others, including by ensuring that Article 16 persons with disabilities: Freedom from exploitation, violence and abuse (a) Have the right to acquire and change a nationality 1. States parties shall take all appropriate legislative, and are not deprived of their nationality arbitrarily or administrative, social, educational and other on the basis of disability; measures to protect persons with disabilities, both within and outside the home, from all forms of (b) Are not deprived, on the basis of disability, of their exploitation, violence and abuse, including their ability to obtain, possess and utilize documentation gender-based aspects. of their nationality or other documentation of identification, or to utilize relevant processes such as immigration proceedings, that may be needed to facilitate exercise of the right to liberty of movement;
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 56 (c) Are free to leave any country, including their own; Article 21 Freedom of expression and opinion, and access (d) Are not deprived, arbitrarily or on the basis of to information disability, of the right to enter their own country. States parties shall take all appropriate measures to 2. Children with disabilities shall be registered ensure that persons with disabilities can exercise the immediately after birth and shall have the right from right to freedom of expression and opinion, including birth to a name, the right to acquire a nationality and, the freedom to seek, receive and impart information as far as possible, the right to know and be cared for and ideas on an equal basis with others and through by their parents. all forms of communication of their choice, as defined in article 2 of the present Convention, including by: Article 19 Living independently and being included in (a) Providing information intended for the general the community public to persons with disabilities in accessible formats and technologies appropriate to different States parties to this Convention recognize the equal kinds of disabilities in a timely manner and without right of all persons with disabilities to live in the additional cost; community, with choices equal to others, and shall take effective and appropriate measures to facilitate (b) Accepting and facilitating the use of sign full enjoyment by persons with disabilities of this languages, Braille, augmentative and alternative right and their full inclusion and participation in the communication, and all other accessible means, community, including by ensuring that: modes and formats of communication of their choice by persons with disabilities in official interactions; (a) Persons with disabilities have the opportunity to choose their place of residence and where and with (c) Urging private entities that provide services to whom they live on an equal basis with others and are the general public, including through the Internet, to not obliged to live in a particular living arrangement; provide information and services in accessible and usable formats for persons with disabilities; (b) Persons with disabilities have access to a range of in-home, residential and other community support (d) Encouraging the mass media, including providers services, including personal assistance necessary to of information through the Internet, to make their support living and inclusion in the community, and to services accessible to persons with disabilities; prevent isolation or segregation from the community; (e) Recognizing and promoting the use of sign (c) Community services and facilities for the general languages. population are available on an equal basis to persons with disabilities and are responsive to their needs. Article 22 Respect for privacy Article 20 Personal mobility 1. No person with disabilities, regardless of place of residence or living arrangements, shall be subjected States parties shall take effective measures to to arbitrary or unlawful interference with his or her ensure personal mobility with the greatest possible privacy, family, home or correspondence or other independence for persons with disabilities, including types of communication or to unlawful attacks on by: his or her honour and reputation. Persons with disabilities have the right to the protection of the law (a) Facilitating the personal mobility of persons with against such interference or attacks. disabilities in the manner and at the time of their choice, and at affordable cost; 2. States parties shall protect the privacy of personal, health and rehabilitation information of persons with (b) Facilitating access by persons with disabilities to disabilities on an equal basis with others. quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, Article 23 including by making them available at affordable cost; Respect for home and the family
(c) Providing training in mobility skills to persons 1. States parties shall take effective and appropriate with disabilities and to specialist staff working with measures to eliminate discrimination against persons persons with disabilities; with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal (d) Encouraging entities that produce mobility aids, basis with others, so as to ensure that: devices and assistive technologies to take into account all aspects of mobility for persons with disabilities.
57 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 (a) The right of all persons with disabilities who are (b) The development by persons with disabilities of of marriageable age to marry and to found a family their personality, talents and creativity, as well as on the basis of free and full consent of the intending their mental and physical abilities, to their fullest spouses is recognized; potential;
(b) The rights of persons with disabilities to decide (c) Enabling persons with disabilities to participate freely and responsibly on the number and spacing of effectively in a free society. their children and to have access to age-appropriate information, reproductive and family planning 2. In realizing this right, States parties shall ensure education are recognized, and the means necessary that: to enable them to exercise these rights are provided; (a) Persons with disabilities are not excluded from the (c) Persons with disabilities, including children, retain general education system on the basis of disability, their fertility on an equal basis with others. and that children with disabilities are not excluded from free and compulsory primary education, or from 2. States parties shall ensure the rights and secondary education, on the basis of disability; responsibilities of persons with disabilities, with regard to guardianship, wardship, trusteeship, (b) Persons with disabilities can access an inclusive, adoption of children or similar institutions, where quality and free primary education and secondary these concepts exist in national legislation; in education on an equal basis with others in the all cases the best interests of the child shall be communities in which they live; paramount. States parties shall render appropriate assistance to persons with disabilities in the (c) Reasonable accommodation of the individual’s performance of their child-rearing responsibilities. requirements is provided;
3. States parties shall ensure that children with (d) Persons with disabilities receive the support disabilities have equal rights with respect to family required, within the general education system, to life. With a view to realizing these rights, and to facilitate their effective education; prevent concealment, abandonment, neglect and segregation of children with disabilities, States (e) Effective individualized support measures are parties shall undertake to provide early and provided in environments that maximize academic comprehensive information, services and support to and social development, consistent with the goal of children with disabilities and their families. full inclusion.
4. States parties shall ensure that a child shall not be 3. States parties shall enable persons with disabilities separated from his or her parents against their will, to learn life and social development skills to facilitate except when competent authorities subject to judicial their full and equal participation in education and review determine, in accordance with applicable law as members of the community. To this end, States and procedures, that such separation is necessary for parties shall take appropriate measures, including: the best interests of the child. In no case shall a child be separated from parents on the basis of a disability (a) Facilitating the learning of Braille, alternative of either the child or one or both of the parents. script, augmentative and alternative modes, means and formats of communication and orientation and 5. States parties shall, where the immediate family is mobility skills, and facilitating peer support and unable to care for a child with disabilities, undertake mentoring; every effort to provide alternative care within the wider family, and failing that, within the community in (b) Facilitating the learning of sign language and a family setting. the promotion of the linguistic identity of the deaf community; Article 24 Education (c) Ensuring that the education of persons, and in particular children, who are blind, deaf or deafblind, 1. States parties recognize the right of persons with is delivered in the most appropriate languages disabilities to education. With a view to realizing this and modes and means of communication for the right without discrimination and on the basis of equal individual, and in environments which maximize opportunity, States parties shall ensure an inclusive academic and social development. education system at all levels and life long learning directed to: 4. In order to help ensure the realization of this right, States parties shall take appropriate measures to (a) The full development of human potential employ teachers, including teachers with disabilities, and sense of dignity and self-worth, and the who are qualified in sign language and/or Braille, and strengthening of respect for human rights, to train professionals and staff who work at all levels fundamental freedoms and human diversity; of education. Such training shall incorporate disability
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 58 awareness and the use of appropriate augmentative Article 26 and alternative modes, means and formats of Habilitation and rehabilitation communication, educational techniques and materials to support persons with disabilities. 1. States parties shall take effective and appropriate measures, including through peer support, to enable 5. States parties shall ensure that persons with persons with disabilities to attain and maintain disabilities are able to access general tertiary maximum independence, full physical, mental, education, vocational training, adult education and social and vocational ability, and full inclusion and lifelong learning without discrimination and on an participation in all aspects of life. To that end, equal basis with others. To this end, States parties States parties shall organize, strengthen and extend shall ensure that reasonable accommodation is comprehensive habilitation and rehabilitation services provided to persons with disabilities. and programmes, particularly in the areas of health, employment, education and social services, in such a Article 25 way that these services and programmes: Health (a) Begin at the earliest possible stage, and are based States parties recognize that persons with disabilities on the multidisciplinary assessment of individual have the right to the enjoyment of the highest needs and strengths; attainable standard of health without discrimination on the basis of disability. States parties shall take all (b) Support participation and inclusion in the appropriate measures to ensure access for persons community and all aspects of society, are voluntary, with disabilities to health services that are gender- and are available to persons with disabilities as close sensitive, including health-related rehabilitation. In as possible to their own communities, including in particular, States parties shall: rural areas.
(a) Provide persons with disabilities with the same 2. States parties shall promote the development range, quality and standard of free or affordable of initial and continuing training for professionals health care and programmes as provided to and staff working in habilitation and rehabilitation other persons, including in the area of sexual and services. reproductive health and population-based public health programmes; 3. States parties shall promote the availability, knowledge and use of assistive devices and (b) Provide those health services needed by technologies, designed for persons with disabilities, persons with disabilities specifically because of as they relate to habilitation and rehabilitation. their disabilities, including early identification and intervention as appropriate, and services designed Article 27 to minimize and prevent further disabilities, including Work and employment among children and older persons; 1. States parties recognize the right of persons with (c) Provide these health services as close as possible disabilities to work, on an equal basis with others; to people’s own communities, including in rural areas; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour (d) Require health professionals to provide care of the market and work environment that is open, inclusive same quality to persons with disabilities as to others, and accessible to persons with disabilities. States including on the basis of free and informed consent parties shall safeguard and promote the realization of by, inter alia, raising awareness of the human the right to work, including for those who acquire a rights, dignity, autonomy and needs of persons with disability during the course of employment, by taking disabilities through training and the promulgation of appropriate steps, including through legislation, to, ethical standards for public and private health care; inter alia:
(e) Prohibit discrimination against persons with (a) Prohibit discrimination on the basis of disability disabilities in the provision of health insurance, and with regard to all matters concerning all forms of life insurance where such insurance is permitted by employment, including conditions of recruitment, national law, which shall be provided in a fair and hiring and employment, continuance of employment, reasonable manner; career advancement and safe and healthy working conditions; (f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
59 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 (b) Protect the rights of persons with disabilities, on 2. States parties recognize the right of persons with an equal basis with others, to just and favourable disabilities to social protection and to the enjoyment conditions of work, including equal opportunities and of that right without discrimination on the basis equal remuneration for work of equal value, safe and of disability, and shall take appropriate steps to healthy working conditions, including protection from safeguard and promote the realization of this right, harassment, and the redress of grievances; including measures:
(c) Ensure that persons with disabilities are able to (a) To ensure equal access by persons with exercise their labour and trade union rights on an disabilities to clean water services, and to ensure equal basis with others; access to appropriate and affordable services, devices and other assistance for disability-related (d) Enable persons with disabilities to have effective needs; access to general technical and vocational guidance programmes, placement services and vocational and (b) To ensure access by persons with disabilities, continuing training; in particular women and girls with disabilities and older persons with disabilities, to social protection (e) Promote employment opportunities and career programmes and poverty reduction programmes; advancement for persons with disabilities in the labour market, as well as assistance in finding, (c) To ensure access by persons with disabilities obtaining, maintaining and returning to employment; and their families living in situations of poverty to assistance from the State with disability-related (f) Promote opportunities for self-employment, expenses, including adequate training, counselling, entrepreneurship, the development of cooperatives financial assistance and respite care; and starting one’s own business; (d) To ensure access by persons with disabilities to (g) Employ persons with disabilities in the public public housing programmes; sector; (e) To ensure equal access by persons with (h) Promote the employment of persons with disabilities to retirement benefits and programmes. disabilities in the private sector through appropriate policies and measures, which may include affirmative Article 29 action programmes, incentives and other measures; Participation in political and public life
(i) Ensure that reasonable accommodation is provided States parties shall guarantee to persons with to persons with disabilities in the workplace; disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall (j) Promote the acquisition by persons with disabilities undertake to: of work experience in the open labour market; (a) Ensure that persons with disabilities can (k) Promote vocational and professional rehabilitation, effectively and fully participate in political and public job retention and return-to-work programmes for life on an equal basis with others, directly or through persons with disabilities. freely chosen representatives, including the right and opportunity for persons with disabilities to vote and 2. States parties shall ensure that persons with be elected, inter alia, by: disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from (i) Ensuring that voting procedures, facilities and forced or compulsory labour. materials are appropriate, accessible and easy to understand and use; Article 28 Adequate standard of living and social protection (ii) Protecting the right of persons with disabilities to vote by secret ballot in elections and public 1. States parties recognize the right of persons with referendums without intimidation, and to stand for disabilities to an adequate standard of living for elections, to effectively hold office and perform themselves and their families, including adequate all public functions at all levels of government, food, clothing and housing, and to the continuous facilitating the use of assistive and new technologies improvement of living conditions, and shall take where appropriate; appropriate steps to safeguard and promote the realization of this right without discrimination on the (iii) Guaranteeing the free expression of the will basis of disability. of persons with disabilities as electors and to this end, where necessary, at their request, allowing assistance in voting by a person of their own choice;
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 60 (b) Promote actively an environment in which persons (b) To ensure that persons with disabilities have an with disabilities can effectively and fully participate in opportunity to organize, develop and participate in the conduct of public affairs, without discrimination disability-specific sporting and recreational activities and on an equal basis with others, and encourage and, to this end, encourage the provision, on an equal their participation in public affairs, including: basis with others, of appropriate instruction, training and resources; (i) Participation in non-governmental organizations and associations concerned with the public and (c) To ensure that persons with disabilities have political life of the country, and in the activities and access to sporting, recreational and tourism venues; administration of political parties; (d) To ensure that children with disabilities have (ii) Forming and joining organizations of persons with equal access with other children to participation in disabilities to represent persons with disabilities at play, recreation and leisure and sporting activities, international, national, regional and local levels. including those activities in the school system;
Article 30 (e) To ensure that persons with disabilities have Participation in cultural life, recreation, leisure access to services from those involved in the and sport organization of recreational, tourism, leisure and sporting activities. 1. States parties recognize the right of persons with disabilities to take part on an equal basis with others Article 31 in cultural life, and shall take all appropriate measures Statistics and data collection to ensure that persons with disabilities: 1. States parties undertake to collect appropriate (a) Enjoy access to cultural materials in accessible information, including statistical and research data, to formats; enable them to formulate and implement policies to give effect to the present Convention. The process of (b) Enjoy access to television programmes, films, collecting and maintaining this information shall: theatre and other cultural activities, in accessible formats; (a) Comply with legally established safeguards, including legislation on data protection, to ensure (c) Enjoy access to places for cultural performances confidentiality and respect for the privacy of persons or services, such as theatres, museums, cinemas, with disabilities; libraries and tourism services, and, as far as possible, enjoy access to monuments and sites of national (b) Comply with internationally accepted norms to cultural importance. protect human rights and fundamental freedoms and ethical principles in the collection and use of 2. States parties shall take appropriate measures statistics. to enable persons with disabilities to have the opportunity to develop and utilize their creative, 2. The information collected in accordance with this artistic and intellectual potential, not only for their article shall be disaggregated, as appropriate, and own benefit, but also for the enrichment of society. used to help assess the implementation of States parties’ obligations under the present Convention and 3. States parties shall take all appropriate steps, in to identify and address the barriers faced by persons accordance with international law, to ensure that with disabilities in exercising their rights. laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier 3. States parties shall assume responsibility for the to access by persons with disabilities to cultural dissemination of these statistics and ensure their materials. accessibility to persons with disabilities and others.
4. Persons with disabilities shall be entitled, on an Article 32 equal basis with others, to recognition and support of International cooperation their specific cultural and linguistic identity, including sign languages and deaf culture. 1. States parties recognize the importance of international cooperation and its promotion, in 5. With a view to enabling persons with disabilities support of national efforts for the realization of the to participate on an equal basis with others in purpose and objectives of the present Convention, recreational, leisure and sporting activities, States and will undertake appropriate and effective parties shall take appropriate measures: measures in this regard, between and among States and, as appropriate, in partnership with relevant (a) To encourage and promote the participation, to the international and regional organizations and civil fullest extent possible, of persons with disabilities in society, in particular organizations of persons with mainstream sporting activities at all levels; disabilities. Such measures could include, inter alia:
61 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 (a) Ensuring that international cooperation, including Committee shall increase by six members, attaining a international development programmes, is inclusive maximum number of eighteen members. of and accessible to persons with disabilities; 3. The members of the Committee shall serve in (b) Facilitating and supporting capacity-building, their personal capacity and shall be of high moral including through the exchange and sharing of standing and recognized competence and experience information, experiences, training programmes and in the field covered by the present Convention. When best practices; nominating their candidates, States parties are invited to give due consideration to the provision set out in (c) Facilitating cooperation in research and access to article 4.3 of the present Convention. scientific and technical knowledge; 4. The members of the Committee shall be elected (d) Providing, as appropriate, technical and economic by States parties, consideration being given to assistance, including by facilitating access to and equitable geographical distribution, representation of sharing of accessible and assistive technologies, and the different forms of civilization and of the principal through the transfer of technologies. legal systems, balanced gender representation and participation of experts with disabilities. 2. The provisions of this article are without prejudice to the obligations of each State party to fulfil its 5. The members of the Committee shall be elected obligations under the present Convention. by secret ballot from a list of persons nominated by the States parties from among their nationals Article 33 at meetings of the Conference of States parties. National implementation and monitoring At those meetings, for which two thirds of States parties shall constitute a quorum, the persons 1. States parties, in accordance with their system elected to the Committee shall be those who obtain of organization, shall designate one or more focal the largest number of votes and an absolute majority points within government for matters relating to of the votes of the representatives of States parties the implementation of the present Convention, and present and voting. shall give due consideration to the establishment or designation of a coordination mechanism within 6. The initial election shall be held no later than government to facilitate related action in different six months after the date of entry into force of the sectors and at different levels. present Convention. At least four months before the date of each election, the Secretary-General of the 2. States parties shall, in accordance with their legal United Nations shall address a letter to the States and administrative systems, maintain, strengthen, parties inviting them to submit the nominations designate or establish within the State party, a within two months. The Secretary-General shall framework, including one or more independent subsequently prepare a list in alphabetical order of all mechanisms, as appropriate, to promote, protect and persons thus nominated, indicating the State parties monitor implementation of the present Convention. which have nominated them, and shall submit it to When designating or establishing such a mechanism, the States parties to the present Convention. States parties shall take into account the principles relating to the status and functioning of national 7. The members of the Committee shall be elected institutions for protection and promotion of human for a term of four years. They shall be eligible for rights. re-election once. However, the term of six of the members elected at the first election shall expire 3. Civil society, in particular persons with disabilities at the end of two years; immediately after the first and their representative organizations, shall be election, the names of these six members shall be involved and participate fully in the monitoring chosen by lot by the chairperson of the meeting process. referred to in paragraph 5 of this article.
Article 34 8. The election of the six additional members of the Committee on the Rights of Persons Committee shall be held on the occasion of regular with Disabilities elections, in accordance with the relevant provisions of this article. 1. There shall be established a Committee on the Rights of Persons with Disabilities (hereafter referred 9. If a member of the Committee dies or resigns to as ’the Committee’), which shall carry out the or declares that for any other cause she or he can functions hereinafter provided. no longer perform her or his duties, the State party which nominated the member shall appoint another 2. The Committee shall consist, at the time of entry expert possessing the qualifications and meeting the into force of the present Convention, of twelve requirements set out in the relevant provisions of this experts. After an additional sixty ratifications or article, to serve for the remainder of the term. accessions to the Convention, the membership of the
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 62 10. The Committee shall establish its own rules of Article 36 procedure. Consideration of reports
11. The Secretary-General of the United Nations 1. Each report shall be considered by the Committee, shall provide the necessary staff and facilities for which shall make such suggestions and general the effective performance of the functions of the recommendations on the report as it may consider Committee under the present Convention, and shall appropriate and shall forward these to the State convene its initial meeting. party concerned. The State party may respond with any information it chooses to the Committee. The 12. With the approval of the General Assembly, Committee may request further information from the members of the Committee established under States parties relevant to the implementation of the the present Convention shall receive emoluments present Convention. from United Nations resources on such terms and conditions as the Assembly may decide, having 2. If a State party is significantly overdue in the regard to the importance of the Committee’s submission of a report, the Committee may notify responsibilities. the State party concerned of the need to examine the implementation of the present Convention in 13. The members of the Committee shall be entitled that State party, on the basis of reliable information to the facilities, privileges and immunities of experts available to the Committee, if the relevant report is on mission for the United Nations as laid down in the not submitted within three months following the relevant sections of the Convention on the Privileges notification. The Committee shall invite the State and Immunities of the United Nations. party concerned to participate in such examination. Should the State party respond by submitting the Article 35 relevant report, the provisions of paragraph 1 of this Reports by States parties article will apply.
1. Each State party shall submit to the Committee, 3. The Secretary-General of the United Nations shall through the Secretary-General of the United Nations, make available the reports to all States parties. a comprehensive report on measures taken to give effect to its obligations under the present Convention 4. States parties shall make their reports widely and on the progress made in that regard, within available to the public in their own countries and two years after the entry into force of the present facilitate access to the suggestions and general Convention for the State party concerned. recommendations relating to these reports.
2. Thereafter, States parties shall submit subsequent 5. The Committee shall transmit, as it may consider reports at least every four years and further appropriate, to the specialized agencies, funds whenever the Committee so requests. and programmes of the United Nations, and other competent bodies, reports from States parties 3. The Committee shall decide any guidelines in order to address a request or indication of a applicable to the content of the reports. need for technical advice or assistance contained therein, along with the Committee’s observations 4. A State party which has submitted a and recommendations, if any, on these requests or comprehensive initial report to the Committee need indications. not, in its subsequent reports, repeat information previously provided. When preparing reports to the Article 37 Committee, States parties are invited to consider Cooperation between States parties and doing so in an open and transparent process and to the Committee give due consideration to the provision set out in article 4.3 of the present Convention. 1. Each State party shall cooperate with the Committee and assist its members in the fulfilment 5. Reports may indicate factors and difficulties of their mandate. affecting the degree of fulfilment of obligations under the present Convention. 2. In its relationship with States parties, the Committee shall give due consideration to ways and means of enhancing national capacities for the implementation of the present Convention, including through international cooperation.
63 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Article 38 Article 41 Relationship of the Committee with other bodies Depositary
In order to foster the effective implementation of the The Secretary-General of the United Nations shall be present Convention and to encourage international the depositary of the present Convention. cooperation in the field covered by the present Convention: Article 42 Signature (a) The specialized agencies and other United Nations organs shall be entitled to be represented The present Convention shall be open for signature at the consideration of the implementation of by all States and by regional integration organizations such provisions of the present Convention as fall at United Nations Headquarters in New York as of 30 within the scope of their mandate. The Committee March 2007. may invite the specialized agencies and other competent bodies as it may consider appropriate to Article 43 provide expert advice on the implementation of the Consent to be bound Convention in areas falling within the scope of their respective mandates. The Committee may invite The present Convention shall be subject to ratification specialized agencies and other United Nations organs by signatory States and to formal confirmation by to submit reports on the implementation of the signatory regional integration organizations. It shall Convention in areas falling within the scope of their be open for accession by any State or regional activities; integration organization which has not signed the Convention. (b) The Committee, as it discharges its mandate, shall consult, as appropriate, other relevant bodies Article 44 instituted by international human rights treaties, with Regional integration organizations a view to ensuring the consistency of their respective reporting guidelines, suggestions and general 1. ’Regional integration organization’ shall mean recommendations, and avoiding duplication and an organization constituted by sovereign States of overlap in the performance of their functions. a given region, to which its member States have transferred competence in respect of matters Article 39 governed by this Convention. Such organizations shall Report of the Committee declare, in their instruments of formal confirmation or accession, the extent of their competence with The Committee shall report every two years to the respect to matters governed by this Convention. General Assembly and to the Economic and Social Subsequently, they shall inform the depositary of Council on its activities, and may make suggestions any substantial modification in the extent of their and general recommendations based on the competence. examination of reports and information received from the States parties. Such suggestions and general 2. References to ’States parties’ in the present recommendations shall be included in the report of Convention shall apply to such organizations within the Committee together with comments, if any, from the limits of their competence. States parties. 3. For the purposes of article 45, paragraph 1, and Article 40 article 47, paragraphs 2 and 3, any instrument Conference of States parties deposited by a regional integration organization shall not be counted. 1. The States parties shall meet regularly in a Conference of States parties in order to consider 4. Regional integration organizations, in matters any matter with regard to the implementation of the within their competence, may exercise their right present Convention. to vote in the Conference of States parties, with a number of votes equal to the number of their 2. No later than six months after the entry into force member States that are parties to this Convention. of the present Convention, the Conference of the Such an organization shall not exercise its right to States parties shall be convened by the Secretary- vote if any of its member States exercises its right, General of the United Nations. The subsequent and vice versa. meetings shall be convened by the Secretary-General of the United Nations biennially or upon the decision of the Conference of States parties.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 64 Article 45 enter into force for all States parties on the thirtieth Entry into force day after the number of instruments of acceptance deposited reaches two thirds of the number of States 1. The present Convention shall enter into force on parties at the date of adoption of the amendment. the thirtieth day after the deposit of the twentieth instrument of ratification or accession. Article 48 Denunciation 2. For each State or regional integration organization ratifying, formally confirming or acceding to the A State party may denounce the present Convention Convention after the deposit of the twentieth such by written notification to the Secretary-General of instrument, the Convention shall enter into force on the United Nations. The denunciation shall become the thirtieth day after the deposit of its own such effective one year after the date of receipt of the instrument. notification by the Secretary-General.
Article 46 Article 49 Reservations Accessible format
1. Reservations incompatible with the object and The text of the present Convention shall be made purpose of the present Convention shall not be available in accessible formats. permitted. Article 50 2. Reservations may be withdrawn at any time. Authentic texts
Article 47 The Arabic, Chinese, English, French, Russian and Amendments Spanish texts of the present Convention shall be equally authentic. 1. Any State party may propose an amendment to the present Convention and submit it to the In witness thereof the undersigned plenipotentiaries, Secretary-General of the United Nations. The being duly authorized thereto by their respective Secretary-General shall communicate any proposed Governments, have signed the present Convention. amendments to States parties, with a request to be notified whether they favour a conference of States parties for the purpose of considering and deciding upon the proposals. In the event that, within four months from the date of such communication, at least one third of the States parties favour such a conference, the Secretary-General shall convene the conference under the auspices of the United Nations. Any amendment adopted by a majority of two thirds of the States parties present and voting shall be submitted by the Secretary-General to the General Assembly for approval and thereafter to all States parties for acceptance.
2. An amendment adopted and approved in accordance with paragraph 1 of this article shall enter into force on the thirtieth day after the number of instruments of acceptance deposited reaches two thirds of the number of States parties at the date of adoption of the amendment. Thereafter, the amendment shall enter into force for any State party on the thirtieth day following the deposit of its own instrument of acceptance. An amendment shall be binding only on those States parties which have accepted it.
3. If so decided by the Conference of States parties by consensus, an amendment adopted and approved in accordance with paragraph 1 of this article which relates exclusively to articles 34, 38, 39 and 40 shall
65 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 Optional Protocol to the Convention on the Rights of Persons with Disabilities
The States parties to the present Protocol have Article 4 agreed as follows: 1. At any time after the receipt of a communication Article 1 and before a determination on the merits has been reached, the Committee may transmit to the State 1. A State party to the present Protocol (’State party’) party concerned for its urgent consideration a request recognizes the competence of the Committee on the that the State party take such interim measures Rights of Persons with Disabilities (’the Committee’) as may be necessary to avoid possible irreparable to receive and consider communications from or damage to the victim or victims of the alleged on behalf of individuals or groups of individuals violation. subject to its jurisdiction who claim to be victims of a violation by that State party of the provisions of the 2. Where the Committee exercises its discretion Convention. under paragraph 1 of this article, this does not imply a determination on admissibility or on the merits of the 2. No communication shall be received by the communication. Committee if it concerns a State party to the Convention that is not a party to the present Protocol. Article 5
Article 2 The Committee shall hold closed meetings when examining communications under the present The Committee shall consider a communication Protocol. After examining a communication, inadmissible when: the Committee shall forward its suggestions and recommendations, if any, to the State party (a) The communication is anonymous; concerned and to the petitioner.
(b) The communication constitutes an abuse of the Article 6 right of submission of such communications or is incompatible with the provisions of the Convention; 1. If the Committee receives reliable information indicating grave or systematic violations by a State (c) The same matter has already been examined by party of rights set forth in the Convention, the the Committee or has been or is being examined Committee shall invite that State party to cooperate under another procedure of international investigation in the examination of the information and to this end or settlement; submit observations with regard to the information concerned. (d) All available domestic remedies have not been exhausted. This shall not be the rule where 2. Taking into account any observations that may the application of the remedies is unreasonably have been submitted by the State party concerned prolonged or unlikely to bring effective relief; as well as any other reliable information available to it, the Committee may designate one or more of its (e) It is manifestly ill-founded or not sufficiently members to conduct an inquiry and to report urgently substantiated; or when to the Committee. Where warranted and with the consent of the State party, the inquiry may include a (f) The facts that are the subject of the visit to its territory. communication occurred prior to the entry into force of the present Protocol for the State party concerned 3. After examining the findings of such an inquiry, the unless those facts continued after that date. Committee shall transmit these findings to the State party concerned together with any comments and Article 3 recommendations.
Subject to the provisions of article 2 of the 4. The State party concerned shall, within six present Protocol, the Committee shall bring any months of receiving the findings, comments and communications submitted to it confidentially to the recommendations transmitted by the Committee, attention of the State party. Within six months, the submit its observations to the Committee. receiving State shall submit to the Committee written explanations or statements clarifying the matter and 5. Such an inquiry shall be conducted confidentially the remedy, if any, that may have been taken by that and the cooperation of the State party shall be sought State. at all stages of the proceedings.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 66 Article 7 2. References to ’States parties’ in the present Protocol shall apply to such organizations within the 1. The Committee may invite the State party limits of their competence. concerned to include in its report under article 35 of the Convention details of any measures taken in 3. For the purposes of article 13, paragraph 1, and response to an inquiry conducted under article 6 of article 15, paragraph 2, any instrument deposited by a the present Protocol. regional integration organization shall not be counted.
2. The Committee may, if necessary, after the end 4. Regional integration organizations, in matters of the period of six months referred to in article 6.4, within their competence, may exercise their right to invite the State party concerned to inform it of the vote in the meeting of States parties, with a number measures taken in response to such an inquiry. of votes equal to the number of their member States that are parties to this Protocol. Such an organization Article 8 shall not exercise its right to vote if any of its member States exercises its right, and vice versa. Each State party may, at the time of signature or ratification of the present Protocol or accession Article 13 thereto, declare that it does not recognize the competence of the Committee provided for in articles 1. Subject to the entry into force of the Convention, 6 and 7. the present Protocol shall enter into force on the thirtieth day after the deposit of the tenth instrument Article 9 of ratification or accession.
The Secretary-General of the United Nations shall be 2. For each State or regional integration organization the depositary of the present Protocol. ratifying, formally confirming or acceding to the Protocol after the deposit of the tenth such Article 10 instrument, the Protocol shall enter into force on the thirtieth day after the deposit of its own such The present Protocol shall be open for signature instrument. by signatory States and regional integration organizations of the Convention at United Nations Article 14 Headquarters in New York as of 30 March 2007. 1. Reservations incompatible with the object Article 11 and purpose of the present Protocol shall not be permitted. The present Protocol shall be subject to ratification by signatory States of this Protocol which have 2. Reservations may be withdrawn at any time. ratified or acceded to the Convention. It shall be subject to formal confirmation by signatory regional Article 15 integration organizations of this Protocol which have formally confirmed or acceded to the Convention. It 1. Any State party may propose an amendment to shall be open for accession by any State or regional the present Protocol and submit it to the Secretary- integration organization which has ratified, formally General of the United Nations. The Secretary-General confirmed or acceded to the Convention and which shall communicate any proposed amendments has not signed the Protocol. to States parties, with a request to be notified whether they favour a meeting of States parties for Article 12 the purpose of considering and deciding upon the proposals. In the event that, within four months 1. ’Regional integration organization’ shall mean from the date of such communication, at least one an organization constituted by sovereign States of third of the States parties favour such a meeting, the a given region, to which its member States have Secretary-General shall convene the meeting under transferred competence in respect of matters the auspices of the United Nations. Any amendment governed by the Convention and this Protocol. Such adopted by a majority of two thirds of the States organizations shall declare, in their instruments of parties present and voting shall be submitted by formal confirmation or accession, the extent of their the Secretary-General to the General Assembly competence with respect to matters governed by for approval and thereafter to all States parties for the Convention and this Protocol. Subsequently, acceptance. they shall inform the depositary of any substantial modification in the extent of their competence.
67 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13 2. An amendment adopted and approved in accordance with paragraph 1 of this article shall enter into force on the thirtieth day after the number of instruments of acceptance deposited reaches two thirds of the number of States parties at the date of adoption of the amendment. Thereafter, the amendment shall enter into force for any State party on the thirtieth day following the deposit of its own instrument of acceptance. An amendment shall be binding only on those States parties which have accepted it.
Article 16
A State party may denounce the present Protocol by written notification to the Secretary-General of the United Nations. The denunciation shall become effective one year after the date of receipt of the notification by the Secretary-General.
Article 17
The text of the present Protocol shall be made available in accessible formats.
Article 18
The Arabic, Chinese, English, French, Russian and Spanish texts of the present Protocol shall be equally authentic.
In witness thereof the undersigned plenipotentiaries, being duly authorized thereto by their respective Governments, have signed the present Protocol.
Innocenti Digest No. 13 Promoting the Rights of Children with Disabilities 68
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