- Email: [email protected]
The United Nations Convention on the Rights of Persons with Disabilities
OCCASIONAL REVIEW
The United Nations Convention on the Rights of Persons with Disabilities
experience some disability. Disability is not something that happens to only a minority of humanity but is an experience we all share to a greater or lesser extent. Historically there have been two dominant but different ways of thinking about disability; commonly described as the medical model and the social model. The medical model focuses on the intrinsic problem (be it physical, mental or psychological) causing a person’s disability and tries to correct the problem, or disease process, using clinical interventions. The social model of disability emphasizes the obstacles society creates that limit disabled people’s health and wellbeing. An example may clarify these two different approaches; if a child has no legs, the medical model of disability would explore the options available to replace the legs, such as artificial limbs or a wheel chair and so facilitate mobility, whereas the social model would focus on the built environment and ways in which mobility can be improved for children in wheelchairs; by using ramps rather than steps for instance. ICF-CY sees the medical and social models of disability as partially valid and not mutually exclusive, with both medical and social responses appropriate to the problems associated with disability. ICF-CY creates a biopsycho-social model of disability, integrating the medical and social models with health seen at three distinct levels; biological, individual and societal (Figure 1). The ICF-CY model identifies these three levels of human functioning, at the level of body or body part, the whole person, and the whole person in a social context. Disability therefore involves dysfunction at one or more of these levels; impairment of body structure or function, activity limitation or participation restriction. Examples of the external environmental factors shown in Figure 1 include issues as diverse as social attitudes, architectural characteristics, legal and social structures, climate and terrain while internal personal factors include gender, age, coping styles, social background, education, profession, past and current experience. The ICF-CY document provides a list of domains. These can become a classification system when qualifiers are used. Qualifiers record the presence and severity of a functional problem at the body, person and societal levels. In the classification of body function and structure, the primary qualifier indicates the presence of an impairment on a five point scale (no impairment, mild, moderate, severe and complete) whereas in the activity and participation sections the performance qualifier describes what a child can do in his or her current environment and the capacity qualifier describes the child’s objective ability to execute a task or action. So the capacity qualifier indicates the highest probable level of functioning in that domain at a given moment. Having both performance and capacity data means a gap can be identified. If capacity is less than performance, then the child’s current environment has enabled her to perform better than the data about capacity would predict: the environment has facilitated performance. But if capacity is greater than performance then an aspect of the environment is a barrier to performance. Colleagues in physiotherapy and occupational therapy have been quicker than paediatricians in adopting ICF-CY in clinical practice, but its implications, particularly the importance of participation and interventions to improve participation, are being explored in research projects.
Douglas Simkiss
Abstract The United Nations Convention on the Rights of Persons with Disabilities was created in 2009. It does not create new rights but does highlight the universal human rights and how these apply for people with disabilities. This article describes the convention in the context of a new understanding of functioning, disability and health and the United Nations Convention on the Rights of the Child. It highlights the importance of participation in life for children with disabilities and considers the role of Paediatricians in advocacy for these rights.
Keywords advocacy; International Classification of Functioning, Disability and Health; participation; United Nations Convention on the Rights of Persons with Disabilities; United Nations Convention on the Rights of the Child
Introduction The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was ratified by the United Kingdom government in June 2009 and is an important document for children with disabilities and their families. To understand its relevance to paediatric practice, we need to understand the concept of participation described in the International Classification of Functioning, Disability and Health, as well as the United Nations Convention on the Rights of the Child and the importance role of paediatricians in advocacy. This article will discuss each of these issues.
International Classification of Functioning, Disability and Health The International Classification of Functioning, Disability and Health, Children and Young People’s version, commonly known as ICF-CY, is World Health Organisation’s framework for health and disability; complementing the International Classification of Disease (ICD). ICF-CY is a conceptual framework for the definition and measurement of disability and health in children. ICFCY stresses health and functioning, rather than disability. In earlier models, disability began where health ended; once a person was disabled they were in a separate category but ICF-CY puts the notions of health and disability differently, it recognizes that everyone can experience a reduction in health and therefore
Douglas Simkiss PhD FHEA FRCP(Ed) FRCPCH is Clinical Director, Children and Families Division, Birmingham Community Healthcare NHS Trust & Honorary Associate Professor in Child Health, Warwick Medical School, University of Warwick, UK. Conflict of interest: none.
PAEDIATRICS AND CHILD HEALTH 23:10
449
Ó 2013 Elsevier Ltd. All rights reserved.
OCCASIONAL REVIEW
Participation rights: rights that allow children and adolescents to take an active role in their communities (e.g., the freedom to express opinions; to have a say in matters affecting their own lives; to join associations). These rights are also called “Autonomy rights” or “Self-determination rights” and are normally subordinate to the previous two types of rights.
Health condition Disorder or disease
Body functions and structure
Activity
Environmental factors
Protection rights: rights that are essential for safeguarding children and adolescents from all forms of abuse, neglect and exploitation (e.g., special care for refugee children; protection against involvement in armed conflict, child labour, sexual exploitation, torture and drug abuse); this also includes Prevention rights. Articles in the UNCRC that are particularly relevant to disabled children are described in Table 1, but Article 23 relates specifically to disabled children; children who have any kind of disability should have special care and support so that they can lead full and independent lives. This article is really taking about participation in life and requires states to recognize that disabled children should enjoy ‘full’ lives. It further recognizes the right of disabled children to ‘special care’. Such support is to be provided to disabled children free of charge where possible, subject to resources. The aim of such support should be to allow every child to achieve ‘the fullest possible social integration and individual development’. The UNCRC has had a significant impact improving the lives of children around the world, but it has been clear that children with disabilities have not experienced the expression of these rights to the same extent as other children and that this is true for adults with disabilities also. This led to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). It is important to remember that the rights in this Convention are not new rights. They are the same human rights recognized in the Universal Declaration of Human Rights, the Convention on the Rights of the Child and other international human rights treaties but the Convention on the Rights of Persons with Disabilities guarantees that these rights are respected for people with disabilities.
Participation
Personal factors
Contextual factors
Figure 1 The ICF model of disability.
Participation in life Participation, defined as involvement in life situations, is important for all children. Research into the impact of interventions to promote participation in life for children with disabilities is developing; the SPARCLE study is a very good case in point. SPARCLE 1 was a Europe wide study, led by Professor Colver from Newcastle University, which evaluated participation in life for children with cerebral palsy aged 8e12 years old. There was wide variation in the extent of participation across Europe with children in east Denmark consistently showing better participation than children from other regions of Europe. Some of this variation was explained by intrinsic factors and pain, but the research suggests that the built environment was an important factor in either allowing or obstructing participation. The research suggests that all countries should promote legislation to adapt the environment as this will improve the participation of disabled children.
The United Nations Convention on the Rights of the Child
UNCRC rights particularly relevant to disabled children
The United Nations Convention on the Rights of the Child (UNCRC) is the most widely ratified United Nations Convention making it the closest thing to an internationally agreed human rights treaty. It is a legal document that asserts a full array of rights that are inherently due to children; laws that protect rights are fundamentally different from those that extend privileges that can and are revoked by executive or legislative powers. UNCRC contains four groups of rights, the first two are together called Provision rights:
Article 2 (Non-discrimination) e The Convention applies to everyone whatever their race, religion, abilities, whatever they think or say and whatever type of family they come from Article 3 e All organisations concerned with children should work towards what is best for each child Article 4 e Governments should make these rights available to children Article 12 (The right to participation) e Children have the right to say what they think should happen, when adults are making decisions that affect them, and to have their opinions taken into account Article 24 e Children have the right to good quality health care and to clean water, nutritious food and a clean environment so that they will stay healthy. Rich countries should help poorer countries achieve this
Survival rights: the right to life and to have the most basic needs met (e.g., adequate standard of living, shelter, nutrition, medical treatment); also referred to as “Basic rights”. Development rights: the rights enabling children to reach their fullest potential (e.g. education, play and leisure, cultural activities, access to information and freedom of thought, conscience and religion); also referred to as “interests” rather than “rights”.
PAEDIATRICS AND CHILD HEALTH 23:10
Table 1
450
Ó 2013 Elsevier Ltd. All rights reserved.
OCCASIONAL REVIEW
United Nations Convention on the Rights of Persons with Disabilities The UNCRPD is a convention for people with disabilities of all ages, but some important articles for disabled children are described in Table 2. The case for UNDRPD is well made by Coralie Severs (Figure 2). As with the UNCRC, there is a specific article in UNCRPD, article 7, relating to disabled children. It says that ‘Governments agree to take every possible action so that children with disabilities can enjoy all human rights and freedoms equally with other children. They also agree to make sure that children with disabilities can express their views freely on all things that affect them. What is best for each child should always be considered first’. In addition, article 23 specifically required that disabled children have equal rights in respect of family life and requires states to provide ‘early and comprehensive information, services and support’ to prevent ‘concealment, abandonment, neglect and segregation’ of disabled children. When the family is not able to care for a disabled child, the state must make ‘every effort’ to find alternative care within the wider family or in a family setting in the community.
Figure 2 The need for UNCRPD.
Finally, article 24 of UNCRPD requires a state to create an ‘inclusive education system’. Children with disabilities have a right to be educated ‘on an equal basis with others in the communities in which they live’. The UK government entered a reservation on article 24 and made a declaration on the definition of ‘inclusion’, saying
UNCRPD rights particularly relevant to disabled children Article 3 e The principles of this convention are C Respect for everyone’s inherent dignity, freedom to make their own choices and independence C Non-discrimination (treating everyone fairly) C Full participation and inclusion in society (being included in your community) C Respect for differences and accepting people with disabilities as part of human diversity C Equal opportunity C Accessibility (having access to transportation, places and information, and not being refused access because you have a disability) C Equality between men and women (having the same opportunities whether you are a girl or a boy) C Respect for the evolving capacity of children with disabilities and their right to preserve their identity (being respected for your abilities and proud of who you are) Article 9 e Accessibility: Governments agree to make it possible for people with disabilities to live independently and participate in their communities. Any place that is open to the public, including buildings, roads, schools and hospitals, must be accessible by persons with disabilities, including children. Article 19 e Living independently and being included in the community: people have the right to make choices about where they live, whether or not they have a disability. When you grow up you have the right to live independently if you prefer and to be included in your community. You must also have access to support services if you need help to live in the community, such as care in your home and personal assistance
‘The General Education System in the United Kingdom includes mainstream and special schools, which the UK Government understands is allowed under the Convention’ The UNCRPD was accompanied by an excellent guide for children explaining the convention called ‘It’s all about ability’. The guide makes a number of suggestions on how children can ‘make rights real’ (Table 3). But clinicians working with children also have a role in disseminating information on UNCRPD, the UK government is a signatory to the convention. This is an advocacy role, a task at which some Paediatricians have excelled over the years.
Advocacy Advocacy is a difficult concept to grasp, but here are two definitions. Elspeth Webb used the following story to describe advocacy; At the end of the last century the number of children dying from burns and scalds in the homes of Merthyr Tydfil miners outnumbered the number of miners killed in accidents. The opening of the pithead head baths had a much more dramatic impact on these mortality rates than could the opening of the most well equipped burns unit imaginable. Now, as then, health services play a minor role in determining the state of our children’s health. Much more important are the environments in which children live-at home, in school, and in the wider world. Although we must argue for better and appropriate health services for children and young people, our biggest task in advocacy is to change the reality of children’s lives.
Table 2
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451
Ó 2013 Elsevier Ltd. All rights reserved.
OCCASIONAL REVIEW
Activities to disseminate information on UNCRPD C
C
C
C
C
C
Examples of advocacy by paediatricians
Get involved with an organization or a campaign. There is strength in numbers. To join forces with others, you can support or join a local chapter of a national or international organization. They may have specific programmes or campaigns for young people Create your own project. Start an awareness campaign, hole a fund-raiser, conduct a survey (Has somebody you know been treated unfairly? Does your school have only stairs and no ramps?), write a petition to remove barriers you have encountered Organize a club to promote the Convention. Bring children with different abilities together, hold social events with all your friends and invite new people to join. Have movie parties or make dinner together. Just have fun and enjoy each other’s unique gifts and abilities Hold presentations in your school and in surrounding schools about the rights of people with disabilities. Be creative. Make posters and put on plays to help your fellow students understand the rights included in the Convention. Ask a parent or teacher to help organize the presentation, and plan where and when you will be able to teach. Invite your school principal to attend your presentations Make art with a group of your friends about the rights of people with disabilities. These can be drawings, paintings or sculptures e whatever you want to make to help share the news. See if you can display your artwork in your school, local libraries, galleries or restaurants e anywhere people will be able to enjoy your art. You can move your exhibition to different locations over time and share the Convention with many people Share your experiences and the lessons you’ve learnt with others. UNICEF’s Voices of Youth is a popular online discussion forum for young people
C
C
C
C
C
Table 4
self interest. In Table 4 there are examples of effective advocacy by earlier generations of Paediatricians; the UNCRPD affords rights to children with disabilities and provides a new arena for advocacy. A
FURTHER READING A Disability History Timeline: The struggle for equal rights through the ages, 2013. http://help.northwest.nhs.uk/storage/library/NHS_ DISABILITY_BROCHURE_-_Small_File.pdf (accessed 31.3.13). It’s about ability e an explanation of the Convention on Rights of Persons with Disabilities. UNICEF and the Victor Pineda Foundation, 2009. http://www.unicef.org/publications/files/Its_About_Ability_Learning_ Guide_EN.pdf (accessed 31.3.13). Steve Broach, Luke Clements, Janet Read. Disabled children: a legal handbook, 2010. http://www.councilfordisabledchildren.org.uk/ resources/cdcs-resources/disabled-children-a-legal-handbook (accessed 31.3.13). Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) http://research.ncl.ac.uk/sparcle/index.htm (accessed 31.3.13). Waterston T. Teaching and learning about advocacy. Arch Dis Child Educ Pract Ed 2009; 94: 24e8.
Table 3
and Ann Dyson from the American Academy of Pediatrics suggests; ‘Advocacy is many things. It is speaking out, speaking up, speaking for. In its simplest and most profound form, advocacy is giving voice to the questions, “What is wrong here? Couldn’t we do better?” Advocates witness and bring to light abuses and inequalities, unfair practices and dangerous conditions. Advocates take unpopular positions by questioning the status quo. They ask “Why?” when others assert, “We have always done it this way”. Some advocacy involves taking serious risks, caring enough about a cause to question authority and even to court personal repercussions. But other advocacy work is quiet, reformative and constructive e advocates who don’t simply wag their fingers and cry foul but figure out new ways of addressing serious problems and making a significant difference.’
Practice points C
C
C
Paediatricians sit in an influential position and are seen as protagonists for children and young people without the bias of
PAEDIATRICS AND CHILD HEALTH 23:10
Job Lewis Smith: promoted breast feeding of abandoned illegitimate children by wet nurses James Spence: pressed for parents to be allowed to stay in hospital with their children Donald Court: ensured that parents were represented on a committee for reforming children’s health services Hugh Jackson: publicized the harm done by children ingesting adult medicines and became a fervent advocate of injury prevention Murray Katcher: worked for legislation to prevent scalds by lowering water heater temperature settings
452
The medical model of disability is not sufficient to address the issues for children with disabilities. A bio-psycho-social approach rooted in the International Classification of Functioning, Disability and Health is more appropriate The United Nations Convention on the Rights of Persons with Disabilities is ratified by the UK government. It highlights on the importance of participation in life and builds on the United Nations Convention on the Rights of the Child Paediatricians have a role in advocating on behalf of children with disabilities and their families
Ó 2013 Elsevier Ltd. All rights reserved.
The United Nations Convention on the Rights of Persons with Disabilities
experience some disability. Disability is not something that happens to only a minority of humanity but is an experience we all share to a greater or lesser extent. Historically there have been two dominant but different ways of thinking about disability; commonly described as the medical model and the social model. The medical model focuses on the intrinsic problem (be it physical, mental or psychological) causing a person’s disability and tries to correct the problem, or disease process, using clinical interventions. The social model of disability emphasizes the obstacles society creates that limit disabled people’s health and wellbeing. An example may clarify these two different approaches; if a child has no legs, the medical model of disability would explore the options available to replace the legs, such as artificial limbs or a wheel chair and so facilitate mobility, whereas the social model would focus on the built environment and ways in which mobility can be improved for children in wheelchairs; by using ramps rather than steps for instance. ICF-CY sees the medical and social models of disability as partially valid and not mutually exclusive, with both medical and social responses appropriate to the problems associated with disability. ICF-CY creates a biopsycho-social model of disability, integrating the medical and social models with health seen at three distinct levels; biological, individual and societal (Figure 1). The ICF-CY model identifies these three levels of human functioning, at the level of body or body part, the whole person, and the whole person in a social context. Disability therefore involves dysfunction at one or more of these levels; impairment of body structure or function, activity limitation or participation restriction. Examples of the external environmental factors shown in Figure 1 include issues as diverse as social attitudes, architectural characteristics, legal and social structures, climate and terrain while internal personal factors include gender, age, coping styles, social background, education, profession, past and current experience. The ICF-CY document provides a list of domains. These can become a classification system when qualifiers are used. Qualifiers record the presence and severity of a functional problem at the body, person and societal levels. In the classification of body function and structure, the primary qualifier indicates the presence of an impairment on a five point scale (no impairment, mild, moderate, severe and complete) whereas in the activity and participation sections the performance qualifier describes what a child can do in his or her current environment and the capacity qualifier describes the child’s objective ability to execute a task or action. So the capacity qualifier indicates the highest probable level of functioning in that domain at a given moment. Having both performance and capacity data means a gap can be identified. If capacity is less than performance, then the child’s current environment has enabled her to perform better than the data about capacity would predict: the environment has facilitated performance. But if capacity is greater than performance then an aspect of the environment is a barrier to performance. Colleagues in physiotherapy and occupational therapy have been quicker than paediatricians in adopting ICF-CY in clinical practice, but its implications, particularly the importance of participation and interventions to improve participation, are being explored in research projects.
Douglas Simkiss
Abstract The United Nations Convention on the Rights of Persons with Disabilities was created in 2009. It does not create new rights but does highlight the universal human rights and how these apply for people with disabilities. This article describes the convention in the context of a new understanding of functioning, disability and health and the United Nations Convention on the Rights of the Child. It highlights the importance of participation in life for children with disabilities and considers the role of Paediatricians in advocacy for these rights.
Keywords advocacy; International Classification of Functioning, Disability and Health; participation; United Nations Convention on the Rights of Persons with Disabilities; United Nations Convention on the Rights of the Child
Introduction The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was ratified by the United Kingdom government in June 2009 and is an important document for children with disabilities and their families. To understand its relevance to paediatric practice, we need to understand the concept of participation described in the International Classification of Functioning, Disability and Health, as well as the United Nations Convention on the Rights of the Child and the importance role of paediatricians in advocacy. This article will discuss each of these issues.
International Classification of Functioning, Disability and Health The International Classification of Functioning, Disability and Health, Children and Young People’s version, commonly known as ICF-CY, is World Health Organisation’s framework for health and disability; complementing the International Classification of Disease (ICD). ICF-CY is a conceptual framework for the definition and measurement of disability and health in children. ICFCY stresses health and functioning, rather than disability. In earlier models, disability began where health ended; once a person was disabled they were in a separate category but ICF-CY puts the notions of health and disability differently, it recognizes that everyone can experience a reduction in health and therefore
Douglas Simkiss PhD FHEA FRCP(Ed) FRCPCH is Clinical Director, Children and Families Division, Birmingham Community Healthcare NHS Trust & Honorary Associate Professor in Child Health, Warwick Medical School, University of Warwick, UK. Conflict of interest: none.
PAEDIATRICS AND CHILD HEALTH 23:10
449
Ó 2013 Elsevier Ltd. All rights reserved.
OCCASIONAL REVIEW
Participation rights: rights that allow children and adolescents to take an active role in their communities (e.g., the freedom to express opinions; to have a say in matters affecting their own lives; to join associations). These rights are also called “Autonomy rights” or “Self-determination rights” and are normally subordinate to the previous two types of rights.
Health condition Disorder or disease
Body functions and structure
Activity
Environmental factors
Protection rights: rights that are essential for safeguarding children and adolescents from all forms of abuse, neglect and exploitation (e.g., special care for refugee children; protection against involvement in armed conflict, child labour, sexual exploitation, torture and drug abuse); this also includes Prevention rights. Articles in the UNCRC that are particularly relevant to disabled children are described in Table 1, but Article 23 relates specifically to disabled children; children who have any kind of disability should have special care and support so that they can lead full and independent lives. This article is really taking about participation in life and requires states to recognize that disabled children should enjoy ‘full’ lives. It further recognizes the right of disabled children to ‘special care’. Such support is to be provided to disabled children free of charge where possible, subject to resources. The aim of such support should be to allow every child to achieve ‘the fullest possible social integration and individual development’. The UNCRC has had a significant impact improving the lives of children around the world, but it has been clear that children with disabilities have not experienced the expression of these rights to the same extent as other children and that this is true for adults with disabilities also. This led to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). It is important to remember that the rights in this Convention are not new rights. They are the same human rights recognized in the Universal Declaration of Human Rights, the Convention on the Rights of the Child and other international human rights treaties but the Convention on the Rights of Persons with Disabilities guarantees that these rights are respected for people with disabilities.
Participation
Personal factors
Contextual factors
Figure 1 The ICF model of disability.
Participation in life Participation, defined as involvement in life situations, is important for all children. Research into the impact of interventions to promote participation in life for children with disabilities is developing; the SPARCLE study is a very good case in point. SPARCLE 1 was a Europe wide study, led by Professor Colver from Newcastle University, which evaluated participation in life for children with cerebral palsy aged 8e12 years old. There was wide variation in the extent of participation across Europe with children in east Denmark consistently showing better participation than children from other regions of Europe. Some of this variation was explained by intrinsic factors and pain, but the research suggests that the built environment was an important factor in either allowing or obstructing participation. The research suggests that all countries should promote legislation to adapt the environment as this will improve the participation of disabled children.
The United Nations Convention on the Rights of the Child
UNCRC rights particularly relevant to disabled children
The United Nations Convention on the Rights of the Child (UNCRC) is the most widely ratified United Nations Convention making it the closest thing to an internationally agreed human rights treaty. It is a legal document that asserts a full array of rights that are inherently due to children; laws that protect rights are fundamentally different from those that extend privileges that can and are revoked by executive or legislative powers. UNCRC contains four groups of rights, the first two are together called Provision rights:
Article 2 (Non-discrimination) e The Convention applies to everyone whatever their race, religion, abilities, whatever they think or say and whatever type of family they come from Article 3 e All organisations concerned with children should work towards what is best for each child Article 4 e Governments should make these rights available to children Article 12 (The right to participation) e Children have the right to say what they think should happen, when adults are making decisions that affect them, and to have their opinions taken into account Article 24 e Children have the right to good quality health care and to clean water, nutritious food and a clean environment so that they will stay healthy. Rich countries should help poorer countries achieve this
Survival rights: the right to life and to have the most basic needs met (e.g., adequate standard of living, shelter, nutrition, medical treatment); also referred to as “Basic rights”. Development rights: the rights enabling children to reach their fullest potential (e.g. education, play and leisure, cultural activities, access to information and freedom of thought, conscience and religion); also referred to as “interests” rather than “rights”.
PAEDIATRICS AND CHILD HEALTH 23:10
Table 1
450
Ó 2013 Elsevier Ltd. All rights reserved.
OCCASIONAL REVIEW
United Nations Convention on the Rights of Persons with Disabilities The UNCRPD is a convention for people with disabilities of all ages, but some important articles for disabled children are described in Table 2. The case for UNDRPD is well made by Coralie Severs (Figure 2). As with the UNCRC, there is a specific article in UNCRPD, article 7, relating to disabled children. It says that ‘Governments agree to take every possible action so that children with disabilities can enjoy all human rights and freedoms equally with other children. They also agree to make sure that children with disabilities can express their views freely on all things that affect them. What is best for each child should always be considered first’. In addition, article 23 specifically required that disabled children have equal rights in respect of family life and requires states to provide ‘early and comprehensive information, services and support’ to prevent ‘concealment, abandonment, neglect and segregation’ of disabled children. When the family is not able to care for a disabled child, the state must make ‘every effort’ to find alternative care within the wider family or in a family setting in the community.
Figure 2 The need for UNCRPD.
Finally, article 24 of UNCRPD requires a state to create an ‘inclusive education system’. Children with disabilities have a right to be educated ‘on an equal basis with others in the communities in which they live’. The UK government entered a reservation on article 24 and made a declaration on the definition of ‘inclusion’, saying
UNCRPD rights particularly relevant to disabled children Article 3 e The principles of this convention are C Respect for everyone’s inherent dignity, freedom to make their own choices and independence C Non-discrimination (treating everyone fairly) C Full participation and inclusion in society (being included in your community) C Respect for differences and accepting people with disabilities as part of human diversity C Equal opportunity C Accessibility (having access to transportation, places and information, and not being refused access because you have a disability) C Equality between men and women (having the same opportunities whether you are a girl or a boy) C Respect for the evolving capacity of children with disabilities and their right to preserve their identity (being respected for your abilities and proud of who you are) Article 9 e Accessibility: Governments agree to make it possible for people with disabilities to live independently and participate in their communities. Any place that is open to the public, including buildings, roads, schools and hospitals, must be accessible by persons with disabilities, including children. Article 19 e Living independently and being included in the community: people have the right to make choices about where they live, whether or not they have a disability. When you grow up you have the right to live independently if you prefer and to be included in your community. You must also have access to support services if you need help to live in the community, such as care in your home and personal assistance
‘The General Education System in the United Kingdom includes mainstream and special schools, which the UK Government understands is allowed under the Convention’ The UNCRPD was accompanied by an excellent guide for children explaining the convention called ‘It’s all about ability’. The guide makes a number of suggestions on how children can ‘make rights real’ (Table 3). But clinicians working with children also have a role in disseminating information on UNCRPD, the UK government is a signatory to the convention. This is an advocacy role, a task at which some Paediatricians have excelled over the years.
Advocacy Advocacy is a difficult concept to grasp, but here are two definitions. Elspeth Webb used the following story to describe advocacy; At the end of the last century the number of children dying from burns and scalds in the homes of Merthyr Tydfil miners outnumbered the number of miners killed in accidents. The opening of the pithead head baths had a much more dramatic impact on these mortality rates than could the opening of the most well equipped burns unit imaginable. Now, as then, health services play a minor role in determining the state of our children’s health. Much more important are the environments in which children live-at home, in school, and in the wider world. Although we must argue for better and appropriate health services for children and young people, our biggest task in advocacy is to change the reality of children’s lives.
Table 2
PAEDIATRICS AND CHILD HEALTH 23:10
451
Ó 2013 Elsevier Ltd. All rights reserved.
OCCASIONAL REVIEW
Activities to disseminate information on UNCRPD C
C
C
C
C
C
Examples of advocacy by paediatricians
Get involved with an organization or a campaign. There is strength in numbers. To join forces with others, you can support or join a local chapter of a national or international organization. They may have specific programmes or campaigns for young people Create your own project. Start an awareness campaign, hole a fund-raiser, conduct a survey (Has somebody you know been treated unfairly? Does your school have only stairs and no ramps?), write a petition to remove barriers you have encountered Organize a club to promote the Convention. Bring children with different abilities together, hold social events with all your friends and invite new people to join. Have movie parties or make dinner together. Just have fun and enjoy each other’s unique gifts and abilities Hold presentations in your school and in surrounding schools about the rights of people with disabilities. Be creative. Make posters and put on plays to help your fellow students understand the rights included in the Convention. Ask a parent or teacher to help organize the presentation, and plan where and when you will be able to teach. Invite your school principal to attend your presentations Make art with a group of your friends about the rights of people with disabilities. These can be drawings, paintings or sculptures e whatever you want to make to help share the news. See if you can display your artwork in your school, local libraries, galleries or restaurants e anywhere people will be able to enjoy your art. You can move your exhibition to different locations over time and share the Convention with many people Share your experiences and the lessons you’ve learnt with others. UNICEF’s Voices of Youth
C
C
C
C
C
Table 4
self interest. In Table 4 there are examples of effective advocacy by earlier generations of Paediatricians; the UNCRPD affords rights to children with disabilities and provides a new arena for advocacy. A
FURTHER READING A Disability History Timeline: The struggle for equal rights through the ages, 2013. http://help.northwest.nhs.uk/storage/library/NHS_ DISABILITY_BROCHURE_-_Small_File.pdf (accessed 31.3.13). It’s about ability e an explanation of the Convention on Rights of Persons with Disabilities. UNICEF and the Victor Pineda Foundation, 2009. http://www.unicef.org/publications/files/Its_About_Ability_Learning_ Guide_EN.pdf (accessed 31.3.13). Steve Broach, Luke Clements, Janet Read. Disabled children: a legal handbook, 2010. http://www.councilfordisabledchildren.org.uk/ resources/cdcs-resources/disabled-children-a-legal-handbook (accessed 31.3.13). Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) http://research.ncl.ac.uk/sparcle/index.htm (accessed 31.3.13). Waterston T. Teaching and learning about advocacy. Arch Dis Child Educ Pract Ed 2009; 94: 24e8.
Table 3
and Ann Dyson from the American Academy of Pediatrics suggests; ‘Advocacy is many things. It is speaking out, speaking up, speaking for. In its simplest and most profound form, advocacy is giving voice to the questions, “What is wrong here? Couldn’t we do better?” Advocates witness and bring to light abuses and inequalities, unfair practices and dangerous conditions. Advocates take unpopular positions by questioning the status quo. They ask “Why?” when others assert, “We have always done it this way”. Some advocacy involves taking serious risks, caring enough about a cause to question authority and even to court personal repercussions. But other advocacy work is quiet, reformative and constructive e advocates who don’t simply wag their fingers and cry foul but figure out new ways of addressing serious problems and making a significant difference.’
Practice points C
C
C
Paediatricians sit in an influential position and are seen as protagonists for children and young people without the bias of
PAEDIATRICS AND CHILD HEALTH 23:10
Job Lewis Smith: promoted breast feeding of abandoned illegitimate children by wet nurses James Spence: pressed for parents to be allowed to stay in hospital with their children Donald Court: ensured that parents were represented on a committee for reforming children’s health services Hugh Jackson: publicized the harm done by children ingesting adult medicines and became a fervent advocate of injury prevention Murray Katcher: worked for legislation to prevent scalds by lowering water heater temperature settings
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The medical model of disability is not sufficient to address the issues for children with disabilities. A bio-psycho-social approach rooted in the International Classification of Functioning, Disability and Health is more appropriate The United Nations Convention on the Rights of Persons with Disabilities is ratified by the UK government. It highlights on the importance of participation in life and builds on the United Nations Convention on the Rights of the Child Paediatricians have a role in advocating on behalf of children with disabilities and their families
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