Report of the Special Rapporteur on the Rights of Persons with Disabilities
[Publication Date: 9 August 2016; Document Symbol: A/71/314]
1. In its resolution 26/20, the Human Rights Council requested the Special Rapporteur of the Human Rights Council on the rights of persons with disabilities to report annually to the General Assembly.
2. In the present report, the Special Rapporteur provides a study focusing on disability-inclusive policies, which are a prerequisite for the implementation of the Convention on the Rights of Persons with Disabilities and the 2030 Agenda for Sustainable Development. The Special Rapporteur explains the complementary and mutually reinforcing nature of those two instruments and how, through inclusive policy frameworks, they can effectively contribute to fighting poverty and exclusion among persons with disabilities.
3. The disability-inclusive policy framework presented in the report builds on previous recommendations by the Special Rapporteur, contained in her reports on the participation of persons with disabilities in decision-making (A/HRC/31/62) and on the need for inclusive social protection systems (A/70/297), to enable the participation of persons with disabilities in social and economic development. Those recommendations are aimed at building societies and institutions that embrace persons with disabilities, as well as all other members of society, on an equal basis, as part of human diversity.
4. In preparing her report, the Special Rapporteur analysed some 90 responses to a questionnaire sent to Member States, national human rights institutions and civil society organizations, including representative organizations of persons with disabilities, whose main trends are reflected in the text.¹
II. The need for disability-inclusive policies
A. Ensuring inclusive development for all
5. Inclusive development is essential to ensure that all marginalized and excluded groups participate effectively in development processes. Many people around the world are excluded from the benefits of and prevented from contributing to development because of their age, sex, sexual orientation, race, colour, religion, national or ethnic origin, poverty, disability or other status. The consequences of such exclusion are deepening inequalities across and within countries: around 80 per cent of the world’s population has only 6 per cent of the world’s wealth, while the richest 1 per cent is likely to have more than 50 per cent in 2016.² As Amartya Sen wrote, an important goal of development should be to ensure that everyone enjoys their rights to achieve the capacity and opportunity to be a full member of society.³ Development should be broad-based enough to benefit all people, as a means both to enhance people’s capabilities and choices and to build overall more inclusive, equitable and sustainable societies that promote and protect people’s rights.
6. Persons with disabilities experience great inequalities worldwide and are more likely to experience poverty and other forms of social exclusion. They are also less likely to be employed, receive an education, or gain access to public services. Moreover, they are more likely to be the victims of violence and contract HIV/AIDS.⁴ Deaf persons, hard of hearing persons, deaf-blind persons, autistic persons and persons with psychosocial or intellectual disabilities, among other groups, face additional challenges in accessing essential services, such as health care, education or justice, owing to existing discriminatory legal and policy frameworks, segregated facilities and/or the lack of support, including support services.
7. Discussions on inclusive development often overlook the partic ular and wideranging barriers that persons with disabilities face in participating in society. They include physical barriers that prevent access to public spaces, workplaces and modes of transportation; barriers to information and communication (such as the lack of sign language interpretation, written information, screen readers, Braille and easy-to-read formats); institutional barriers that come in the form of programme design (for example, linking disability benefits to the inability to work); and attitudinal barriers that lead to discrimination and/or misconceptions about the rights and abilities of persons with disabilities.
8. Disability-inclusive policies are critical to removing those barriers, by enabling the conditions and support necessary that persons with disabilities may require to participate in and benefit from development outcomes and processes. That means considering disability-related issues in all public policies and programmes and enabling the participation of persons with disabilities through their design, implementation, monitoring and evaluation. Disability-inclusive policies entail a full range of policies, designed with persons with disabilities in mind, that take into account the environment in which people live and how it interacts with any impairment people may have. When adequately implemented, such policies can contribute to removing the barriers to participation that persons with disabilities face.
9. The adoption of the Sustainable Development Goals in 2015, which contain several references to persons with disabilities, represents an exceptional opportunity for States to design and implement disability-inclusive policies for the next 15 years, as they review their national development plans to align them to the Goals. Nonetheless, while there is an international commitment to “leave no one behind” and a consensus that no goal should be met unless it is met for everyone, it remains unclear how those promises will be translated into practice by State officials and policymakers worldwide, particularly in relation to persons with disabilities; hence the need for guidance on how to design and implement disability-inclusive policies and ensure that all the Goals and their related targets benefit persons with disabilities.
B. A human rights-based approach to disability-inclusive policies
10. Inclusive development cannot be effectively achieved in the absence of a human rights framework. A human rights-based approach, as a conceptual framework, offers practical guidance for the design, implementation, evaluation and monitoring of development policies and programmes based on international human rights standards.⁵ Development efforts should uphold and promote basic human rights principles, such as respect for human dignity, non-discrimination, participation and accountability. Thus, a human rights-based approach to development requires that disability-inclusive policies consider the demands and needs of persons with disabilities.
11. A human rights-based approach to disability is also required to achieve the inclusion of persons with disabilities in development. The Convention on the Rights of Persons with Disabilities represents a major paradigm shift in the approach to persons with disabilities from both a human rights and a development perspective. The dual nature of the Convention reinforces the idea that human rights and development are inextricably linked. In that regard, it is a valuable development tool that calls for inclusive policies and programmes, inclusive international cooperation and a participatory approach to policymaking. Accordingly, policy efforts should move away from the charitable and medical approaches towards a human rights-based approach to disability, where persons with disabilities are considered as rights holders, rather than as mere receivers of protection, rehabilitation and/or welfare. Development policies should not undermine the rights of persons with disabilities or contribute to their social exclusion. Moreover, the structural barriers that cause their exclusion and poverty cannot be addressed without the direct involvement and participation of persons with disabilities. That requires a profound change in the way many States, development agencies and other organizations currently operate worldwide.
12. The Convention on the Rights of Persons with Disabilities and the 2030 Agenda for Sustainable Development are complementary and mutually reinforcing instruments crucial to guaranteeing the full and effective participation of persons with disabilities in society. Whereas the Convention can offer normative guidance for the implementation of the 2030 Agenda, the Sustainable Development Goals can contribute to the effective realization of the human rights of persons with disabilities. In that regard, the Special Rapporteur welcomes the efforts of the United Nations and its mechanisms, including the Committee on the Rights of Persons with Disabilities, to integrate the 2030 Agenda into its work to promote the rights of persons with disabilities. In particular, the Special Rapporteur commends the initiative of the Office of the United Nations High Commissioner for Human Rights to develop guidance tools for States, national human rights institutions and civil society on how to implement and monitor the Sustainable Development Goals at the national level, in line with the Convention and the development of human rights indicators for the Convention, linked to the Goals, to measure progress in its implementation.
C. The economic case for disability-inclusive policies
13. There is a growing consensus that poverty affects persons with disabilities in a disproportionate manner, a correlation that is deeper than it first appears. In fact, while many studies recognize the link between poverty and disability, too often they do not consider the direct and indirect extra costs of living with a disability. Direct costs include the extra expenses for disability-specific items, such as assistive devices and personal assistance, and greater expenditure for general services, such as medical care and transportation. Indirect costs include lost benefits or opportunity costs, such as the loss of income of persons with disabilities or of their family members who cannot work, or work less, if the household includes one or more persons with disabilities (see A/70/297). A recent and growing body of literature estimates that those costs can amount to some 30 per cent of a country’s average wages.⁶ When those costs are taken into account, in practice the standard of living of many persons with disabilities who are technically not below the poverty line, is inferior to that of people who are considered poor. For example, after taking into consideration the costs of disability in Viet Nam, the poverty rate for persons with disabilities increased from some 17 to 23 per cent.⁷
14. Furthermore, household poverty rates do not consider the allocation of resources within a household. Evidence shows that persons with disabilities often do not get a share of their household’s resources. For instance, if resources are tight, parents may pay for the education of their non-disabled children but not for those with a disability.⁸ Studies using multidimensional indices of poverty therefore show a greater poverty gap between persons with and without disabilities.⁹ All those considerations need to be taken into account to fight poverty among persons with disabilities and to achieve the goal of ending poverty in all its forms everywhere.
15. The cost of exclusion is significant not only for persons with disabilities and their families, but also for a country’s economy. When persons with disabilities face barriers to participation, they are less likely to be able to work and thus contribute less to the economy. Even when they do work, they tend to earn less than their non-disabled peers because of their more limited access to education (including higher education), good quality jobs and loans to start businesses. A study by the International Labour Organization in 2009 estimated that the cost of excluding persons with disabilities could amount to between 1 and 7 per cent of a country’s gross domestic product.¹⁰ Those percentages might actually be understated, as they do not consider the costs of the reduced work time and wages of family members who are responsible for caring for relatives with disabilities, owing to a lack of support or the barrier-free environment that persons with disabilities need to be more independent;¹¹ nor do they take into account the future lost earnings of children without disabilities who forego some education because of increased responsibilities at home.¹²
16. Furthermore, it is impossible to measure the loss to society of excluding the talents and perspectives of persons with disabilities. Whether it is in the sciences, the arts or industry, persons with disabilities have much to contribute to society that goes unrealized when they are not given the opportunity to participate. A recently published history of autism shows how a growing understanding of the capacities of persons with disabilities and the efforts to break down barriers to participation can unleash major contributions to society.¹³
III. Key components of disability-inclusive policies
17. There are many elements to be considered in implementing disability-inclusive policies at the national level. While full inclusion cannot happen overnight, any State can begin by taking positive and meaningful action towards creating more inclusive societies. That entails changing the way in which State officials and policymakers think about persons with disabilities and establishing a policy framework that is responsive to their demands and needs. In that regard, the present report aims to raise awareness and call the attention of States to the most pressing issues when designing and implementing any policy.
18. The initial step towards establishing an inclusive policy framework involves three key aspects. First, the existence of a non-discrimination framework that prohibits discrimination on the basis of disability in all areas of life and ensures that reasonable accommodation is provided to persons with disabilities. Second, accessibility is a requirement that must be set up to enable persons with disabilities to access and enjoy all programmes and services and to participate fully and independently in society. Third, the availability of services and the provision of assistive devices that support the autonomy and inclusion of persons with disabilities, allowing them to benefit from all policies and programmes on an equal basis with others.
19. Policymakers and other public officials must take those three aspects into account when designing and implementing any public policy or programme, as they are indispensable for addressing the specific demands and needs of persons with disabilities. Furthermore, such components can significantly improve the effectiveness and efficiency of development policies and programmes, not only for persons with disabilities, but for the general population as well.
20. In taking such steps, the cross-cutting nature of disability must be recognized. Given that disability affects every aspect of a person’s life, unless inclusion is promoted in all areas of life it will not be fully effective. For example, inclusive vocational training requires inclusive employment and both require accessible transportation. Similarly, access to justice will not be granted to persons with disabilities if their legal capacity is not fully recognized. As all human rights are indivisible and interdependent, the denial of one right necessarily compromises the enjoyment of others. A coordinated approach to policymaking must therefore take into account all the above components and address the multiple aspects of the lives of persons with disabilities.
21. Importantly, a disability-inclusive and human rights-based approach to policy development should be adopted from the start in order to avoid future amendments. Disability-inclusive policies and programmes should not be the result of “after the facts” add-ons, adjustments or accommodations, as those may benefit only some persons with disabilities. While they may be appropriate in the short run, as long as they do not create new segregated structures, to ensure full participation all policies and programmes must be designed from the outset with the entire population in mind.
22. States have an obligation under international human rights law to ensure that their legal and policy frameworks do not discriminate on the basis of disability and therefore must guarantee that all persons with disabilities can access and benefit from them on an equal basis with others.14 The Convention on the Rights of Persons with Disabilities addresses non-discrimination as a cross-cutting issue. Article 2 of the Convention defines discrimination on the basis of disability very broadly to cover all forms of disability-based discrimination, including direct and indirect discrimination, discrimination by association and the denial of reasonable accommodation. Article 3 includes non-discrimination and equality of opportunity as general principles of the Convention. Article 4 (1) (b) and (c) requires States to repeal any legislation, regulations, customs and practices that constitute discrimination against persons with disabilities, including discrimination by private actors. Article 5 calls on States to adopt robust anti-discrimination legal frameworks prohibiting all forms of discrimination on the basis of disability and guaranteeing to all persons with disabilities equal and effective legal protection against discrimination on all grounds.
23. While most States have non-discrimination provisions in their legislation, including in their constitutions, disability is not always mentioned as a ground of discrimination and often, when included, is only considered in particular areas, such as employment. In line with human rights law in general and with the Convention on the Rights of Persons with Disabilities specifically, persons with disabilities should be protected from all forms of discrimination in all aspects of their lives and States should include disability as a ground of discrimination in all their legislation, including civil, administrative, criminal and procedural law. Since in most countries the constitution and constitutional law are at the top of the hierarchy of norms, constitutional provisions constitute a useful tool for protecting persons with disabilities against discrimination.
24. Article 5 (3) of the Convention requires States to take all appropriate steps to ensure that reasonable accommodation is provided to persons with disabilities, whenever that is needed in a particular case. That means providing all the necessary and appropriate modifications and adjustments to accommodate a person’s individual characteristics or differences, so as to ensure that persons with disabilities can enjoy all human rights and fundamental freedoms, including in accessing infrastructures, programmes and services, on an equal basis with others. According to article 2 of the Convention, that duty extends to persons who are associated with a person with disabilities (for example, agreeing to a flexible working hours schedule for a person who cares for a child with disabilities) and should not impose a disproportionate or undue burden on the duty-bearer, be it the State or a private entity. States must clearly establish in their legal and policy frameworks that the denial of reasonable accommodation constitutes discrimination on the basis of disability.
25. States must acknowledge that they have an immediate duty to provide reasonable accommodation, as the right to non-discrimination is not subject to progressive realization (see A/70/297). While ensuring comprehensive accessibility and sustainable, consistent support services will not happen overnight, it is critical to apply the principle of non-discrimination immediately, including the provision of reasonable accommodation, so that persons with disabilities can access and benefit from development policies and programmes right away.
26. The practical implementation of the duty of States to provide reasonable accommodation remains a challenge. Existing legislation in a number of States maintains definitions of reasonable accommodation that are narrower than the one provided for in article 2 of the Convention on the Rights of Persons with Disabilities. Moreover, some States lack practical guidance on how to provide it and/or on how to assess cases of disproportionate or undue burden, which limits the provision of that right. Contributions to the present report illustrate the fact that many States do not consider earmarking funds for the implementation of reasonable accommodation by the relevant public institutions and thus resort to the budget for ordinary operations, which are often limited and underfunded. Furthermore, budgetary frameworks do not usually provide for a flexible mechanism to respond to immediate requests for reasonable accommodation. Hence, States should not only ensure the provision of accommodation in line with the Convention, but also allocate sufficient earmarked funds for that purpose and train its public officials to ensure effective implementation.
27. States need to take all necessary measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise, including private schools, health-care providers, employers and providers of goods and services. Contributions to the present report illustrate that, in many cases, the non-discrimination provisions for persons with disabilities, in particular the duty of States to provide reasonable accommodation, applied exclusively to public entities, could not thus be invoked in cases of discrimination by private actors. States must enforce the provision of reasonable accommodation in both the public and private sectors.
28. Ensuring access to justice and effective remedies for victims of discrimination, whether through judicial or non-judicial proceedings, is essential for the enforcement of non-discrimination frameworks. Persons with disabilities are often denied access to justice on an equal basis with others for a variety of reasons, including denial of their legal capacity, lack of awareness of their rights, unaffordability, inaccessibility and absence of procedural accommodation. In many States, the national human rights institution or an equality body is mandated to examine allegations of discrimination, with different levels of powers and competences. While in some cases those institutions can impose sanctions and redress, in others they are only able to issue non-binding recommendations. In such contexts, judicial remedies should complement the work of national human rights institutions and equality bodies.
29. States might also consider adopting specific measures to accelerate or achieve de facto equality of persons with disabilities, in order to increase their participation in different areas, such as education, employment or political participation, as foreseen in article 5 (4) of the Convention on the Rights of Persons with Disabilities. For instance, many States have already implemented positive measures or affirmative actions, in particular employment quotas, to combat discrimination against persons with disabilities at work. Nevertheless, it is worth noting that in the absence of human rights-based public policies oriented to combating the structural disadvantages faced by persons with disabilities, the impact of those positive measures will be insufficient to prompt a change towards more inclusive societies.
30. States need to pay attention to the multiple and intersecting forms of discrimination faced by persons with disabilities. The Convention on the Rights of Persons with Disabilities recognizes the significance of such forms of discrimination, particularly in relation to women and children with disabilities, since they are at a higher risk of discrimination and exclusion (see subparagraph (p) of the preamble and articles 6 and 7). In the design and implementation of public policies and programmes, States must acknowledge the situation of the most marginalized groups among persons with disabilities, such as women, youth, older persons, indigenous persons, persons with psychosocial disabilities, persons with intellectual disabilities, autistic persons and deaf-blind persons (see, for example, CRPD/C/SVK/CO/1 and CRPD/C/AUS/CO/1). To be inclusive, policies and programmes must respond to the needs of those heterogeneous groups.
31. As with racism, sexism, ageism and xenophobia, ableism is a prevalent problem in all societies that must be acknowledged and contested. The assumption that persons with disabilities have less value than others lies at the root of many problematic policies and programmes related to persons with disabilities. However, whereas other forms of intolerance are increasingly challenged by public opinion, ableist ways of thinking usually legitimize the rhetoric behind different forms of discrimination against persons with disabilities. The Convention on the Rights of Persons with Disabilities carries an enormous potential to challenge negative assumptions regarding persons with disabilities and to foster respect for their rights and dignity. To combat ableism, States must respect and embrace diversity by promoting awareness throughout society of the capabilities and contributions of persons with disabilities and accepting them as part of human diversity.
32. Accessibility is a requirement to build barrier-free, inclusive societies where people can live independently and participate fully in all aspects of life and in their communities. Without access to the physical environment, transportation and information and communications, persons with disabilities cannot exercise their rights, participate in and benefit from development programmes and policies. All physical infrastructures, including buildings, transport systems, public spaces and any other facilities, should be designed in a way that they can be fully accessed and used by persons with disabilities. That includes not only entrances, hallways, rooms, restrooms and emergency evacuation routes, but also furniture and devices available for public use, such as elevators, counters, blackboards and cash machines. All information and communications should also be designed in an accessible manner, including signage, announcements, documents and television and radio broadcasts. When accessible information and communications are not available, a range of persons with different disabilities cannot effectively benefit from public policies and programmes.
33. According to articles 3 (f) and 9 of the Convention on the Rights of Persons with Disabilities, States have an international obligation to take appropriate measures to ensure access to persons with disabilities, on an equal basis with others, to the physical environment, transportation, information and communications, including information technologies and systems, and other facilities and services open or provided to the public, be they public or private, in urban, remote and rural settings. Such measures must include the identification and elimination of all existing barriers in the implementation of policies and programmes. General comment No. 2 (2014) on accessibility of the Committee on the Rights of Persons with Disabilities provides useful guidance on implementing those obligations.
34. The principle of universal design is fundamental to achieving full accessibility. Universal design implies that products and environments are designed to be usable by everyone, to the greatest extent possible without the need for adaptation or specialized design. Accessibility can therefore be achieved, not merely by retrofitting existing infrastructure, but by applying the principles of universal design, where programmes, policies and infrastructures are designed with the full range of human diversity and capabilities in mind. As the Committee made clear in its general comment No. 2, universal design makes societies accessible for all individuals, not only for persons with disabilities.
35. In order to ensure consistency and progress effectively towards full accessibility, States should establish national standards and regulations on accessibility and universal design, including on access to information and communications technologies, in order to provide clear guidance for those designing and implementing policies and programmes. Such standards do not need be developed from scratch. The International Organization for Standardization has published an accessibility guide and model standards.¹⁵ Similarly, the International Telecommunication Union has developed guidelines and recommendations related to the accessibility of telecommunications and information and communications technologies for persons with disabilities. All those standards can be adapted to country-specific contexts.¹⁶
36. Although many States have accessibility standards and/or guidelines in place, often they are not compulsory or only meet the needs of persons with physical impairments. Significant gaps remain in relation to particular groups, such as blind persons, deaf persons, persons with intellectual disabilities and autistic persons, particularly in the area of information and communications. For example, most public sector websites are not accessible. Contributions to the present report show that standards and regulations on accessibility are fragmented by sector, which tends to hinder effective coordination between different institutions, departments or companies in charge of their implementation. National standards and regulations on accessibility and universal design should be designed in close cooperation with all relevant stakeholders, including representative organizations of persons with disabilities, and in accordance with existing international standards in order to ensure interoperability across countries.¹⁷
37. While universal design should be incorporated in all new infrastructures, programmes and services, full accessibility cannot be implemented overnight. In the interim, it is therefore important to develop strategies and time-bound action plans to make public and private facilities and services accessible for persons with disabilities. Whereas retrofitting all structures in the short term may not be feasible, requiring that all new constructions and renovations follow accessibility and universal design standards has limited cost implications. Estimates indicate that it would only add about 1 per cent to construction costs.¹⁸
38. Funding for reasonable accommodations to ensure short-term case-by-case solutions to enable access is also important. An example would be providing a portable ramp to a student using a wheelchair in an inaccessible school. Although that measure would remove the barrier for that individual, it does not make the environment more inclusive. As such, it is a stop-gap measure that must be accompanied by a time-bound plan to make the programmes and services fully inclusive. The lack of accessibility cannot be invoked as an excuse by States to avoid their obligation to ensure access to the existing physical environment, transportation, information and communications and services. In such cases, reasonable accommodations must be provided.
39. The enforcement of accessibility regulations and standards needs to be improved in many States. Contributions to the present report highlight a low level of implementation of accessibility policies or programmes worldwide. Accessibility enforcement mechanisms are often the responsibility of local governmental authorities, but many of them have no monitoring capacity. In addition, regulations for the conservation of heritage buildings are very often invoked to justify non-compliance by a State with accessibility regulations and thus old buildings remain inaccessible to persons with disabilities.
40. To address the widespread lack of enforcement, accessibility requirements should be established for general buildings, transportation and web regulations, as well as other statutory technical regulations. Similarly, authorizations and licences to build or alter existing structures and services should require the implementation of accessibility standards. States should also incorporate accessibility requirements into their public procurement policies and procedures and into their national public investment systems. For example, directive 2014/24/EU of the European Parliament and the Council on public procurement takes into account accessibility criteria for persons with disabilities.¹⁹
41. Private services provided to the public and entities open to the same must also meet appropriate accessibility standards. That includes service providers, such as private schools and medical facilities, and private businesses, such as stores or cinemas. Any facility or entity designed to serve the public at large, in particular public services, must be accessible. As most service providers and business owners are not aware of accessibility standards and the varied needs of persons with disabilities, States must provide clear guidance and support on how to address them. Financial support to improve accessibility and training to achieve compliance should be considered alongside enforcement.²⁰
42. States should invest in awareness-raising and education programmes on the implementation of accessibility requirements. Well-elaborated standards and guidelines are useless unless they are known and understood by those who need to apply them. That implies sensitization and training for State authorities, policymakers and planners. Accessibility and universal design should also be incorporated into the curricula of technology institutes and universities for all careers in the areas of design, architecture, construction and engineering.
C. Assistive technologies and support services
43. While achieving full accessibility of the general environment and of government programmes will significantly improve the participation of persons with disabilities, it is still insufficient. The availability of affordable assistive and support services is vital for many persons with disabilities, especially the poor, to be able to fully access and benefit from policies and programmes on an equal basis with others. For many persons with disabilities, access to such goods and services constitutes a precondition for the respect of their inherent dignity and the full and equal enjoyment of all human rights and fundamental freedoms.
44. Assistive devices and technologies have the primary purpose of allowing individuals to perform an activity they would otherwise be unable to do, or increase the ease and safety with which those activities are performed. In the case of children with disabilities, they have a significant impact on their early childhood development and educational outcome, reducing the need for other types of support. Common examples of assistive devices include wheelchairs, walkers, crutches, prostheses, orthoses, adapted cutlery, extendable reaching devices and adaptive switches for persons with physical impairments; hearing aids, assistive hearing technology, alarm devices, amplified telephones, deaf-blind communicators; spectacles, magnifiers, white canes, voice recognition software, Braille displays and screen readers for persons with visual impairments; communication boards and speech synthesizers for persons with communication needs; and computers and visual and talking timers for persons with intellectual impairments. Assistive devices and technologies range from low-cost solutions to high-tech gadgets.
45. According to articles 20, 26 (3) and 28 (2) (a) of the Convention on the Rights of Persons with Disabilities, States have an obligation to promote the availability, knowledge and use of assistive devices and technologies for persons with disabilities.²² Article 20 (b) requires States to take effective measures to facilitate the access of persons with disabilities, including children with disabilities, to mobility aids, devices, assistive technologies and forms of live assistance and intermediaries. Those measures must include making them available at no or an affordable cost. Moreover, as part of their general obligations, States should undertake or promote research and development of, and promote the availability and use of, devices and assistive technologies suitable for persons with disabilities, giving priority to technologies at an affordable cost (article 4 (1) (g)). They should also provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities (article 4 (1) (h)). Despite those obligations, in many developing countries only 5 to 15 per cent of those in need of assistive devices and technologies are able to obtain them.
46. States should take into consideration several elements in the provision of assistive devices and technologies in order to ensure their effective distribution and use.²¹ Many persons with disabilities and their families do not know about the existence of assistive products and services. In many countries, assistive devices and technologies are produced on a very small scale or not at all. When available, assistive technology services are often delivered in limited numbers and/or in major cities, far away from where most persons with disabilities live. Moreover, persons with disabilities are rarely given the opportunity to choose the most appropriate assistive device for their specific needs or environment. The provision of assistive devices and technologies therefore needs to be an integral part of rehabilitation and habilitation services, so as to ensure that there are referral systems that provide proper fitting and/or customization and instructions on proper usage, maintenance and repair. Guidelines for the appropriate provision and distribution of assistive devices and technologies should also be considered, as well as proper training for personnel working in the area. Above all, systems should be structured in a way that promotes the empowerment and choices of persons with disabilities.²³
47. As stated earlier, some assistive devices and technologies can be costly, especially in low-income countries. Unless they are provided for free or subsidized, many persons with disabilities will not be able to afford them.²¹ In that regard, States should consider a number of measures to ensure affordability. First, assistive devices and technologies should be included in the coverage of national health insurance and/or social protection schemes. Based on the World Health Organization (WHO) priority assistive products list, States should develop a list of essential assistive products according to their national needs and available resources.²⁴ Second, States should also consider waiving import duties and taxes on assistive devices and technologies that are not produced within the country. Finally, States should support local businesses that build and design assistive devices through grants, loans and tax credits. Whether incorporated into existing programmes or provided through new, separate programmes, the provision of assistive devices should be subsidized to the maximum extent of the available resources of States, as required by articles 4 and 28 (2) (a) of the Convention.
48. Different forms of assistance and support services are required by some persons with disabilities to live and fully participate in the community, with choices equal to others. Article 19 (b) of the Convention on the Rights of Persons with Disabilities requires States to ensure that persons with disabilities have access to a range of in-home, residential and other community support services necessary to support living and inclusion in the community and to prevent isolation or segregation from the community. Those support services include personal assistance, support in decision-making, communications support (readers, sign language interpreters), mobility support (guides, service animals), living arrangement services (housing, household care) and community services. They can be both substitutes for and complements to assistive devices. Very often those services are not covered by health insurance or social protection schemes, even though they can take up a significant proportion of the average person’s budget, if they can afford it at all. States should take measures to ensure affordability and guarantee access to those services to the maximum extent of their available resources, to comply with articles 4 and 28 (2) (a), (b) and (c) of the Convention.
49. States should adopt guidelines and criteria to regulate the delivery of assistance and support services, including standards for training and certification. Sign language interpreters, interpreters for deaf-blind persons, personal assistants and other intermediaries should be trained and certified. In the case of sign language interpreters, certification must be in the country’s official sign language. Ethical codes of conduct should also be adopted to assist service providers in fulfilling their duties. Representative organizations of persons with disabilities should be consulted and engaged in all such processes.
50. States must also ensure that regardless of the type of service delivery arrangement (direct provision, public-private partnerships, partnerships with community-based or non-governmental organizations), persons with disabilities receive quality services and adequate support. Services should be designed to enable direct choice and the control of users over services providers, including the way in which support should be provided. In some countries, the allocation of personal budgets is the best option to ensure choice and control by persons with disabilities, thus allowing each individual to decide whom to employ and the type of services and support they receive.²⁵
51. States should consider integrating as many assistance and support services as possible into their existing policies and programmes. In fact, to access the majority of public education, employment, justice or health programmes and services, many persons with disabilities need some kind of support or assistance. Children with disabilities may need additional support in schools, a person with psychosocial disabilities may require support in applying for disability benefits, a person with intellectual disabilities may need a job coach to access employment.²⁶ States should budget and plan for such services when designing their policies and programmes.²⁷
52. Some disability-specific services may be run as separate programmes. They might comprise, among others, services that promote the autonomy and independence of persons with disabilities by providing information, training on independent living skills and peer counselling. They may also include services to help persons with disabilities in the transition from segregated facilities to living in the community. A good practice for delivering such services is through independent living centres that are run primarily by persons with disabilities. Such centres play a fundamental role, not only in the provision of services, but also in supporting individuals to advocate for inclusion and promoting broader changes at the community level.
53. To the maximum extent possible, States should provide support services and assistive devices and technologies under a community-based approach. That means not only providing relevant services in the community where the person lives, but also ensuring the participation of persons with disabilities in decision-making processes and activities related to the design and provision of those services, as well as recognizing and supporting existing social networks and community resources. In that way, community-based services enable the optimal use of local resources, often with more efficient delivery systems than through other measures. When services are not community-based there is either a drive towards segregation, or those needing such services may have difficulty in accessing them. Additionally, when services are designed in a participatory manner and with the communities in mind, their adequacy and adaptability is increased, which results in responses that are sensitive to geographical, social, economic and cultural issues. In the case of indigenous peoples, such community-based services could be used to avoid the risk of assimilation when providing disability-specific services to indigenous persons with disabilities.
54. Data on the availability of assistive devices, personal assistance and other support services is generally unavailable in low- and middle-income countries. It is important that States periodically conduct a needs assessment to determine and address the gaps in the availability of assistive devices and support services, and the effectiveness of that support. That could be done through community-based strategies and surveys.
IV. Implementing disability-inclusive policy frameworks
A. General consideration
55. To ensure the effectiveness of disability-inclusive policies, which should be devised considering accessibility, non-discrimination and support service requirements, States have to adopt a clear policy framework for the inclusion of persons with disabilities across all sectors of society. They must consider adopting a national disability strategy or a national disability action plan for that purpose. Such frameworks may include other specific plans of action on non-discrimination, accessibility and support services.
57. States need to address the interface between national and subnational levels of governance. In many countries, local governments are directly responsible for the implementation of important public policies in the areas of education, health care, housing, planning, construction and development. The lack of a coordinated response between national and local authorities has a negative impact on the availability and quality of services for persons with disabilities, in particular those living in disadvantaged rural and remote areas. Central Governments must ensure, to the extent of their competencies, adequate funding and technical support for local authorities in order to help them fulfil their functions.
58. International cooperation plays an important role in supporting national efforts for the implementation of disability-inclusive policies.²⁸ States must undertake appropriate and effective measures to foster international cooperation, including South-South and triangular cooperation, in partnership with organizations of persons with disabilities. The participation of persons with disabilities is essential to ensure that they are both agents and beneficiaries of development aid. The adoption of the Sustainable Development Goals constitutes an excellent opportunity for ensuring that international cooperation is inclusive of and accessible to persons with disabilities.
59. The promotion of gender equality is also a critical aspect to be included in disability-inclusive policies. Men and women with disabilities face different forms of exclusion and discrimination throughout their life cycle and expectations relating to their role within the family, school, workplace and the community also differ greatly and vary widely across countries. While many States have adopted legal frameworks to guarantee equality of rights between women and men, as well as national gender action plans, only a few have taken concrete action to address the specific needs of women and girls with disabilities, to enhance their participation and to dismantle the barriers they face.
60. Mainstreaming is essential for securing the inclusion of persons with disabilities in different areas of development. All general policies and programmes must be designed to be as inclusive as possible, in order to not create or perpetuate existing barriers in the environment, be they physical, informational, institutional or attitudinal, and must incorporate a disability perspective into policymaking in all sectors and at all levels of governance. As previously mentioned, that can be accomplished by ensuring non-discrimination, accessibility and support provisions. Mainstream strategies may lead to modifications in the objectives and processes of programmes to ensure that persons with disabilities participate in and benefit from them.
61. Persons with disabilities may have particular needs, which cannot be met by making general programmes inclusive, but which can be remedied by establishing disability-specific programmes. However, given that the needs of persons with disabilities cut across all sectors, they should be pursued in an integrated, coherent and well-coordinated manner, as opposed to through an ad hoc approach. Supplying assistive devices that only persons with disabilities need is one thing, but ensuring their participation in education, water and sanitation, employment, health care, transportation, governance, justice and other areas cannot be achieved without mainstreaming disability everywhere.
62. In the same vein, while the reasons for including persons with disabilities in more specialized or technical areas of government, such as energy, agriculture or climate change, may not seem obvious at first, it is important to do so. Policies and programmes in those areas respond to people’s needs and thus can have an impact on the lives of persons with disabilities. Persons with disabilities, for example, experience the effects of climate change differently and more severely than persons without disabilities. It is therefore important to analyse the implications of all policies and programmes for persons with disabilities, to ensure that they are inclusive.
63. Persons with disabilities know best which barriers they face in their own contexts and how they impact on their lives. Article 4 (3) of the Convention on the Rights of Persons with Disabilities requires States to closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations in the development and implementation of legislation and policies concerning issues relating to them. That includes any policy and programme, whether disability-specific or mainstream, that might have a direct or indirect impact on their lives. It is therefore imperative to include them fully in the development, implementation, monitoring and evaluation of all policies and programmes. The Special Rapporteur has developed a thematic study on the right of persons with disabilities to participate in decision-making that provides specific guidance on how to ensure that obligation is met (A/HRC/31/62).
64. States must adopt all appropriate legislative, administrative and other measures to ensure the effective and active participation of persons with disabilities in all phases of policy development. That requires prior consultation and engagement with representative organizations of persons with disabilities before the adoption of all policies and programmes. Importantly, States should be aware that service providers may have a conflict of interest and should give priority to the views of representative organizations of persons with disabilities led by persons with disabilities themselves.
65.Preparatory studies and analysis for policy formulation should include consultation and engagement with representative organizations of persons with disabilities, and incorporate relevant data on persons with disabilities and on potential barriers and facilitators in the environment that might influence policy outcomes. Proposals for policy design should also clearly identify how persons with disabilities will be included. Any public forum or process for reviewing policy proposals should be fully accessible to persons with disabilities and representative organizations of persons with disabilities should be invited to participate in them.
66. Implementation and evaluation should also be conducted in a participatory manner. Efforts should be made to recruit persons with disabilities into the State apparatus and to positions with private entities contracted by Governments. States should explore partnerships with representative organizations of persons with disabilities for the provision of services in order to gain inputs from users of services themselves, without waiving their primary responsibility for service provision. All monitoring and evaluation systems should examine the level of engagement of persons with disabilities in all policies and programmes.
67. National strategies and plans for the inclusion of persons with disabilities must be cross-cutting and comprehensive, with clear lines of accountability as to which State authorities are responsible for implementing them and in what time frame. States must designate an entity with the required authority for overseeing the implementation of such strategies, including requesting and receiving reports and other internal data from other line ministries in order to effectively monitor their actions in implementing disability-inclusive policies. States must also ensure that the agencies mandated with the different aspects of implementation are provided with adequate resources for that purpose. Government focal points and coordination mechanisms to advance and facilitate the implementation of the Convention on the Rights of Persons with Disabilities should be considered for that purpose, as foreseen in article 33 (1) of the Convention.
68. The effective implementation of laws, policies and regulations promoting disability inclusion also requires strong enforcement mechanisms, with meaningful penalties for non-compliance. Enforcement mechanisms should be focused at two levels. On the one hand, the State entity overseeing the national strategic plans on disability inclusion must have the authority to initiate investigations and recommend sanctions to both State and private entities who fail to implement them. Those can range from simply making the list of non-compliant entities public to the levying of fines, or the confiscation of public funds. On the other hand, persons with disabilities should themselves be able to trigger a procedure when they feel that State or private entities have failed to comply with adopted policies and programmes.
69. At the very least, States should establish complaint mechanisms for persons with disabilities to lodge grievances against non-compliance with laws and regulations. Those grievances should be investigated and sanctioned accordingly. National human rights institutions and independent mechanisms to promote, protect and monitor implementation of the Convention can play a key role in carrying out inquiries and investigations into the implementation of policies and programmes (as required by article 33 (2)), as well as providing assistance to persons with disabilities in accessing legal remedies. Consumer protection agencies have also demonstrated that they can be an effective mechanism for challenging non-compliance with the rights of persons with disabilities.
70. States must ensure that all sectoral budgets are devised in accordance with their strategies and plans for the inclusion of persons with disabilities and that public spending is monitored. First, ministries should budget and be accountable for all spending on disability-specific expenditures. Some States have established earmarked funds for persons with disabilities in the budget of all their government entities, aimed at covering disability-specific initiatives. Those schemes promote both service demand and supply, making programmes increasingly inclusive. Secondly, all sectoral budgets must include indicators to measure how much of the general mainstream budget pursues objectives that support the inclusion of persons with disabilities. To be effective, those measures must be accompanied by training and guidance for finance officers.
71. All expenditures should be monitored to ensure compliance with the human rights-based approach to disability. Public funds should not be spent to perpetuate or reinforce discrimination and the exclusion of persons with disabilities (for example, by constructing residential institutions). Consideration should be given to State budget and expenditure frameworks producing reports, in collaboration with representative organizations of persons with disabilities and national human rights institutions, to identify spending that is not consistent with the rights of persons with disabilities, in order to prevent the waste or inefficient use of public resources. Contributions received for the present report illustrate that corruption in State institutions and service providers and flawed procurement processes have an additional negative impact on the allocation of resources.
F. Data collection
72. States should have a timely system for generating appropriate indicators, including the disability indicators outlined in the Sustainable Development Goals and the disaggregation of all indicators by “disability status”. In addition, States may need to develop national indicators to address specific goals and concerns tailored to their particular country context. To produce such indicators, States are required to disaggregate data by disability. Article 31 of the Convention on the Rights of Persons with Disabilities requires States to collect statistics and data to enable them to formulate and implement policies to give effect to the rights of persons with disabilities.
73. The short set of six questions on disability formulated by the Washington Group on Disability Statistics provides a well-tested method for identifying persons with disabilities in national surveys and censuses in an internationally comparable manner. Adding the questions to national surveys (for example, household income and expenditure surveys, labour force surveys and demographic and health surveys) will enable the disaggregation of data needed to monitor most public policies, as well as the indicators for the Sustainable Development Goals. Together with the Washington Group, the United Nations Children’s Fund has developed a specific set of questions for children with disabilities and the International Labour Organization is developing a module on employment and disability for labour force surveys. Other relevant instruments available for in-depth data collection on disability include the WHO model disability survey. All those tools are important for supporting the efforts of States to collect data disaggregated by disability.
G. Embracing diversity
74. A cultural change in how disability is perceived is essential for disability-inclusive policies to be truly successful. Persons with disabilities must not be seen as objects of aversion or charity, but rather as rights holders in the same way as every member of society. An inclusive policy framework must therefore contain strong components that focus on awareness-raising and combating stereotypes and negative attitudes towards disability and persons with disabilities. Awareness-raising efforts can consist of training for State authorities, public officials, the private sector and the media, multimedia campaigns and the incorporation of disability-sensitive materials in school curricula.
75. Knowledge of the rights of persons with disabilities, including legislation, policies and regulations that govern inclusion and how to access State programmes, must be disseminated. According to article 4 (1) (i) of the Convention, States must provide training to professionals and staff working with persons with disabilities, including public officials and service providers, on how to address the rights, concerns and needs of persons with disabilities.
V. Conclusions and recommendations
76. Persons with disabilities are disproportionately affected by inequalities, with significant consequences for individuals, families, communities and societies in general. In order to overcome those inequalities, States must ensure that their national policies and programmes address the needs of persons with disabilities and promote the active participation of their representative organizations in their design, implementation and evaluation. For that purpose, it is necessary to adopt disability-inclusive development strategies that incorporate non-discrimination, accessibility and support measures for persons with disabilities. The United Nations and international cooperation partners should play a crucial role in supporting national efforts for the implementation of disability-inclusive policies, including data collection and monitoring.
77. With the adoption of the 2030 Agenda for Sustainable Development, most States will conduct a review of their national policies against the goals and targets of the Sustainable Development Goals. That represents a unique opportunity to include persons with disabilities adequately across all policies and programmes, as well as to ensure policy coherence and intersectoral coordination. Leaving no persons with disabilities behind requires that all States and relevant stakeholders collaborate to design and implement policies and programmes that are inclusive of persons with disabilities.
78. The Special Rapporteur makes the following recommendations to States with the aim of assisting them in developing and implementing disability-inclusive policies:
(a) Mainstream the rights and needs of persons with disabilities into all policies and programmes and ensure specific programmes and services for needs that cannot be covered by mainstream programmes;
(b) Ensure a human rights-based approach to disability in the design, implementation and evaluation of all policies and programmes;
(c) Ensure the active involvement and participation of persons with disabilities and their representative organizations in the design, implementation and evaluation of all policies and programmes;
(d) Integrate a gender perspective in such policies and programmes, addressing the intersectionality of discrimination faced by women and girls with disabilities;
(e) Establish a clear policy framework that prohibits all forms of discrimination on the basis of disability and guarantees to persons with disabilities equal and effective legal protection against discrimination on all grounds;
(f) Ensure the provision of reasonable accommodation in all programmes, services and interventions, establishing a dedicated funding mechanism for government entities;
(g) Establish a comprehensive policy framework on accessibility, including national accessibility standards and enforcement mechanisms;
(h) Establish a policy framework to ensure that persons with disabilities have access to assistive technologies and support services that are available, accessible, adequate and affordable, and provided under a community-based approach;
(i) Ensure free access to assistive technologies and support services for the poor, as part of the State universal health coverage and social protection systems;
(j) Establish an intersectoral policy framework for the inclusion of persons with disabilities across all sectors and at all levels of governance and consider implementing specific national action plans on accessibility, assistive devices and support services;
(k) Develop disability-related indicators to assess adequately the impact of all policies and programmes on persons with disabilities;
(l) Incorporate the short set of questions formulated by the Washington Group on Disability Statistics in all national surveys and censuses to collect data disaggregated on the basis of disability;
(m) Allocate funds to all public entities to make their policies, programmes and services progressively available, accessible and inclusive of persons with disabilities;
(n) Encourage international cooperation actors to support disability-inclusive policies and programmes and refrain from supporting any policy, programme or practice that is inconsistent with the rights of persons with disabilities.
79. The Special Rapporteur also recommends that the United Nations, including all its programmes, funds and specialized agencies, adequately consider the rights of persons with disabilities in all its work, and that it increase the capacities and promotes the collaboration of United Nations country teams to strengthen internal synergies and coherence when supporting States in implementing disability-inclusive policies.
² See United Nations Development Programme, Human Development Report 2015.
³ Amartya Sen, The Idea of Justice (London, Allen Lane, 2009).
⁴ See World Health Organization (WHO) and World Bank, World Disability Report (2011); and Pierre De Beaudrap, Muriel Mac-Seing, and Estelle Pasquier, “Disability and HIV: a systematic review and a meta-analysis of the risk of HIV infection among adults with disabilities in Sub-Saharan Africa”, AIDS Care, vol. 26, No. 12 (July 2014).
⁵ See Office of the United Nations High Commissioner for Human Rights, “Frequently asked questions on a human rights-based approach to development cooperation”(2006).
⁶ See, for example, J. Cullinan, B. Gannon and S. Lyons, “Estimating the extra cost of living for people with disabilities”, Health Economics,vol. 20, No. 5 (May 2011); Wiebke Kuklys, Amartya Sen’s Capability Approach: Theoretical Insights and Empirical Applications (Springer, 2005); Asghar Zaidi and Tania Burchardt, “Comparing incomes whenneeds differ: equivalization for the extra costs of disability in the UK”, The Review of Income and Wealth,vol. 51, No. 1 (March 2005).
⁷ Daniel Mont and Nguyen Viet Cuon, “Disability and poverty in Vietnam”, The World Bank Economic Review,vol. 25, No. 2 (May 2011).
⁸ Maria Fernanda Rosales-Rueda, “Family investment responses to childhood health conditions: intrafamily allocation of resources”, Journal of Health Economics, vol. 37 (September 2014).
⁹ See, for example, Sophie Mitra, Aleksandra Posarac and Brandon Vick, “Disability and poverty in developing countries: a multidimensional study”, World Development, vol. 41 (January 2013); Jean-François Trani, Mario Biggeri and Vincenzo Mauro, “The multidimensionality of child poverty: evidence from Afghanistan”, Social Indicators Research, vol. 112, No. 2 (June 2013); and Jean-François Trani and Mitchell Loeb, “Poverty and disability: a vicious circle? Evidence from Afghanistan and Zambia”, Journal of International Development, vol. 24, No. S1 (January 2012)
¹⁰ Sebastian Buckup, “The price of exclusion: the economic consequences of excluding people with disabilities from the world of work”, International Labour Organization Employment Working Paper No. 43 (2009).
¹¹ See M. Palmer and others, “The economic lives of people with disabilities in Vietnam”, PloSONE, vol. 10, No. 7 (July 2015).
¹² See, for example, Daniel Mont and Cuong Nguyen, “Does parental disability matter to child education? Evidence from Vietnam”, World Development, vol. 48 (August 2013).
¹³ See Steve Silberman, Neurotribes: The Legacy of Autism and the Future of Neurodiversity (New York, Avery, 2015).
14 See the Universal Declaration of Human Rights, article 7; International Covenant on Civil and Political Rights, articles 2 (1) and 26; International Covenant on Economic, Social and Cultural Rights, article 2 (2); Convention on the Elimination of All Forms of Discrimination against Women, articles 1 and 2; Convention on the Rights of the Child, articles 2 and 23; Convention on the Rights of Persons with Disabilities, articles 2, 3 (b), 4 (1) (b) and (e), and 5; and International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families, articles 1 (1) and 7.
¹⁵ ISO/IEC, “Guide no. 71 for addressing accessibility in standards” (2014).
¹⁶ At the regional level, the European Union is currently drafting a common directivefor web accessibility that, along with the European Accessibility Act, will ensure a common set of accessibility requirements within the European Union. Inclusion Europe has also produced standards to make information easy to read and understand, available from www.easy-to-read.eu/wp-content/uploads/2014/12/EN_Information_for_all.pdf.
¹⁷ See Committee on the Rights of Persons with Disabilities, general comment No. 2.
¹⁸ See Edward Steinfeld, “Education for all: the cost of accessibility”, World Bank Education Notes (2005); and United States Equal Employment Opportunity Commission and United States Department of Justice Civil Rights Division, “Americans with Disabilities Act: questions and answers”, available from www.ada.gov/qandaeng.htm.
¹⁹ The directive provides, inter alia, that for all procurement intended for use by natural persons, the technical specifications shall, except in duly justified cases, be drawn up so as to take into account accessibility criteria for persons with disabilities or design for all users.
²⁰ See National Council on Disability, “Implementation of the Americans with Disabilities Act: challenges, best practices, and new opportunities for success” (2007)
²² See also Committee on Economic Social and Cultural Rights, general comment No. 5 (1994) on persons with disabilities, para. 33, and Committee on the Rights of the Child, general comment No. 9 (2006) on the rights of children with disabilities, paras. 20 and 65.
²¹ WHO and the United Nations Children’s Fund use “assistive technology” as an umbrella term for both assistive devices and related services. See, for example, the discussion paper on assistive technologies for children with disabilities, available from www.unicef.org/disabilities/files/Assistive-Tech-Web.pdf.