BC wide protests for disability rights

Social protection - Article 28 Convention on the Rights of Persons with Disabilities

Social protection is an essential condition for social and economic development for all, but particularly for those who experience poverty and social exclusion. Social protection programmes can play a crucial role in alleviating and preventing poverty and vulnerability to secure people's well-being. They can also enhance the productivity, employability and economic development of people by creating better income-earning opportunities for them. Moreover, social protection can foster social inclusion and participation by ensuring effective access to food, health care, education and support services. Thus, well-designed social protection programmes have the potential to directly improve the enjoyment of rights of persons with disabilities. Regrettably, traditional disability-welfare approaches have promoted the opposite, building and spreading charity and medical perspectives in social protection responses. As a result, for too long, many national social protection systems resulted in furthering paternalism, dependence, segregation and institutionalization of persons with disabilities, limiting their opportunities to live independently in their communities. The United Nations (UN) Convention on the Rights of Persons with Disabilities challenges these views, promoting social protection systems that are inclusive of persons with disabilities and which facilitate active citizenship, social inclusion and community participation. The Convention calls on States parties to ensure that persons with disabilities receive equal access to mainstream social protection programmes and services as well as access to specific programmes and services for disability-related needs and expenses such as support services. Against this background, this article aims to discuss why and how States and other stakeholders should ensure the establishment of disability-inclusive social protection systems, in conformity with the UN Convention on the Rights of Persons with Disabilities.

The adoption of the Convention on the Rights of Persons with Disabilities (CRPD) (CRPD, [ 4] ) represents a major step towards disability‐inclusive social protection. Article 28 refers, for the first time in an international legal instrument, to the right to social protection and links it to the right to an adequate standard of living, including adequate food, clothing and housing, and the continuous improvement of living conditions. It also tailors the right to social protection to persons with disabilities, recognizing that they must enjoy this right without discrimination on the basis of disability, and establishes a pathway for their inclusion in all efforts related to the realization of this right.

More specifically, Article 28 creates an obligation for States parties to take appropriate measures to ensure that persons with disabilities receive equal access to mainstream social protection programmes and services – including basic services, poverty reduction programmes, housing programmes, and retirement benefits and programmes – as well as access to specific programmes and services for disability‐related needs and expenses.

Social protection also resonates in other provisions of the Convention, including in relation to the right to live independently and be included in the community (Art. 19), respect for home and the family (Art. 23), education (Art. 24), health (Art. 25), habilitation and rehabilitation (Art. 26) and work and employment (Art. 27). Importantly, social protection interventions should be measured against the Convention's principles of non‐discrimination, participation and inclusion, equal opportunities, accessibility, and equality between men and women (Art. 3).

The Convention moves beyond traditional disability‐welfare considerations towards a complex equality model that highlights the interdependence and indivisibility of all human rights, stressing that persons with disabilities must enjoy these rights on an equal basis with others.

Traditional disability‐welfare approaches have been instrumental in building and spreading the medical model of disability worldwide (Degener and Quinn, [16] ), since they were part of a societal structure that considered disability as a medical problem, and persons with disabilities as unable to work, cope independently or participate in society. Unsurprisingly, these approaches triggered further segregation and loss of self‐determination. Children with disabilities were sent to special schools and persons with disabilities received medical attention and rehabilitation in segregated settings, along the lines of “fixing” or “curing” them while disregarding their own will. When persons with disabilities were granted disability benefits, this was often based on the premise that they were not able to work.

This approach to disability needs to be challenged and social protection for persons with disabilities needs to move towards intervention systems that promote active citizenship, social inclusion and community participation, while avoiding paternalism, dependence and segregation. The ultimate aim is to achieve the right to live independently and be included in the community, in line with Article 19 of the Convention, which creates an obligation for States to ensure that persons with disabilities enjoy choice on an equal basis with others about life‐shaping decisions (e.g. where and with whom they wish to live), and thus control over their own lives; access to necessary support services as a condition for free choice on an equal basis with others (including the provision of personal assistance); and access to all community services available to others, including in the context of the labour market, housing, transportation, health care and education.

Disability‐inclusive social protection Poverty and disability

Poverty disproportionately affects persons with disabilities, who experience higher rates of poverty and deprivation, and lower levels of income than the general population (Groce et al., [21] ; Elwan, [18] ; ECLAC, [17] ; Mitra, Posarac and Vick, [29] ). A study using comparable data and methods across 15 developing countries in Africa, Asia, and Latin America and the Caribbean found a significant association between disability and multidimensional poverty in at least 11 of the countries studied (Mitra, Posarac and Vick, [29] ). Persons with disabilities are also at a significantly higher risk of relative income poverty in most Member countries of the Organisation for Economic Co‐operation and Development (OECD), with poverty rates for persons with disabilities exceeding 30 per cent in some countries (OECD, [32] ).

The exclusion of persons with disabilities from the labour market is a significant contributor to their disproportionate levels of poverty. Working‐age adults with disabilities experience low employment rates and salaries worldwide (WHO and World Bank, [45] ). A study in ten developing countries shows that unemployment and labour inactivity range from 32 per cent to 100 per cent among people with disabilities, depending on the level of the impairment (Buckup, [ 1] ). Those who work do so primarily in the informal economy, which increases their likelihood of receiving a wage below the minimum rate and of not being covered by social insurance. Persons with psychosocial and intellectual disabilities are less likely to be employed than other persons with disabilities (Vick, Jones and Mitra, [43] ). In OECD countries, the employment rate of persons with disabilities is on average 40 per cent lower than the overall level, while the unemployment rate is twice as high (OECD, [33] ). According to the International Labour Organization (ILO), the economic loss related to the exclusion of persons with disabilities from the labour market in low‐ and middle‐income countries is between 3 per cent and 7 per cent of the gross domestic product (Buckup, [ 1] ).

Discrimination and stigma, unequal opportunities, and physical and attitudinal barriers are also causes for the social exclusion and poverty of persons with disabilities. In particular, lack of education has a significant impact on poverty in adulthood. While research shows that persons with disabilities with higher educational attainments have considerably higher employment and income rates (OECD, [32] ), children and youth with disabilities are less likely to attend or be promoted in school, affecting their opportunities for future employment (WHO and World Bank, [45] ). Additionally, measures such as the arrest of homeless persons have a disproportionate impact on persons with psychosocial disabilities and may criminalize persons in need of support.

Research suggests that poverty reduction and social protection programmes do not meet the needs of persons with disabilities (ILO, [24] ; UNICEF, [42] ). For example, a study in two developing countries reveals that, despite the significant poverty gap between persons with disabilities and the general population, social protection programmes often do not specifically include persons with disabilities or respond to their specific needs. This constitutes a missed opportunity, given that in the past decade most developing countries have implemented new poverty reduction programmes (including cash transfers and public employment schemes) that could have benefited persons with disabilities and supported their exit out of poverty.

Disability‐related extra costs

Persons with disabilities and their families and/or carers incur a range of common daily expenditures that persons without disabilities do not. These include extra costs to purchase goods and services such as health care, transportation, assistive devices, personal assistance and house adaptation. On the one hand, many of these goods and services that are impairment‐related are not available through or covered by national social protection systems (WHO and World Bank, [45] ). On the other hand, persons with disabilities may pay higher prices for accessing the same goods and services as other people (e.g. private health and life insurance, when available) and consume larger amounts of certain non‐specialized goods and services, such as food, heating, personal care, laundry, and telephone and Internet services, thus incurring considerable extra costs (Stapleton, Protik and Stone, [37] ; Zaidi and Burchardt, [46] ).

Importantly, many of these extra costs are directly related to lack of accessibility. An obvious example is transportation, where a person with a disability may be obliged to use taxis on a daily basis owing to the non‐accessibility of the public transport system. Lack of accessibility also reduces the options for obtaining other goods and services. For instance, persons with disabilities often incur considerably higher expenditures for basic items such as food or clothing because they have no alternative to shopping locally or relying on others (Extra Costs Commission, [20] ). Accessible services can also be more costly than their non‐accessible equivalents.

While the extra cost of disability varies greatly depending on the availability and financial accessibility of goods and services (Mitra, Posarac and Vick, [29] ), researchers have calculated that it can amount to almost 50 per cent of an individual's income (Cullinan, Gannon and Lyons, [15] ; Saunders, [35] ; Loyalka, [27] ). A recent study on older persons with disabilities estimates that, on average, disability costs are approximately 65 per cent higher than the net weekly pre‐disability household income (Morciano, Hancock and Pudney, [31] ). In addition, the economic cost of living with a disability includes foregone benefits or opportunity costs (e.g. lost income of individuals with disabilities or their family members who cannot work or who work less, if the household includes one or more persons with disabilities) (Palmer et al., [34] ), the impact of which depends on many factors, including the type of impairment, the household's socio‐economic status, the individual's work status and the policy context (e.g. the existence of disability benefits).

Accordingly, the extra cost of disability has significant consequences for persons with disabilities and may lead to poverty and a lower standard of living when households cannot afford these expenditures. Many persons with disabilities cannot afford education and health services owing to the additional costs incurred because of disability. They also face significant barriers to accessing health care, such as non‐affordable or inadequate health services, discrimination in public and private health insurance, and insufficient insurance coverage. Catastrophically high health expenditures are preponderant among persons with disabilities across all gender and age groups (WHO and World Bank, [45] ). Consequently, the burden of disability‐related extra costs can easily nullify the enjoyment of other human rights, including living independently and with freedom of choice in any given society.

Social protection programmes should cover disability‐related expenditures to prevent a significant deterioration of standard of living and to prevent poverty (CESCR, [ 3] ). While evidence suggests that social benefits contribute positively to reducing the at‐risk‐of‐poverty rates for persons with disabilities (Eurostat, [19] ), in practice very few countries have established flexible systems that cover disability‐related costs. In most cases, benefits are static, provided in fixed lump sums without account being taken of the individual's particular situation and needs.

Life cycle approach

Social protection systems and programmes can only be effective if they address the specific needs of persons with disabilities throughout their life cycle: childhood, adolescence, working age and old age. This approach is aimed at removing existing barriers to accessing age‐based benefits and at creating uninterrupted interventions and a smooth transition from one age group to another with regard to the receipt of benefits.

Social protection should start by enabling children and adolescents with disabilities (and their families) to realize their full potential through inclusive and adequate services and support measures (especially in the education and health sectors); and to combat poverty. In effect, families in which there are children with disabilities are disproportionately more likely to fall below the poverty line (UNICEF, [42] ). Poverty, in turn, remains the main cause of malnutrition, school dropout, abandonment and the institutionalization of children with disabilities (UNICEF, [42] ; WHO and UNICEF, [44] ). States should adopt inclusive and barrier‐free social protection systems as they can have a life‐changing impact on children and adolescents with disabilities.

Social protection also plays an important role for women and men with disabilities of working age by stabilizing and protecting their income in the event of unemployment, illness or inactivity, and by ensuring at least a basic level of income security. Effective measures to support them in finding and retaining quality employment are an essential element of non‐discriminatory and inclusive policies that help them realize their rights and aspirations as productive members of society (ILO, [24] ).

Persons with disabilities who have not acquired entitlements to a contributory pension during working age face considerable difficulties in maintaining an adequate level of income security towards the end of their lives, when adequate non‐contributory pensions are not available. Moreover, as they are often less likely to have a partner or to marry, intra‐family support as an additional source of income security is often insufficient and unreliable (WHO and World Bank, [45] ). Therefore, social protection programmes are necessary to guarantee income security for older persons with disabilities and to provide support services. As disability rates are considerably higher among older persons, there is a growing demand for health and social care and support services to enable them to continue living independently and with dignity.

Women and girls

Women and girls with disabilities face many difficulties in accessing adequate housing, health care, education, vocational training and employment, and are more likely to be institutionalized and experience poverty. The CRPD recognizes that women and girls with disabilities are subject to multiple forms of discrimination, and provides for their equal and full enjoyment of all human rights and fundamental freedoms. It mandates that they have equal access to social protection and poverty reduction programmes.

Accordingly, social protection programmes should address the imbalances of power and the multiple forms of discrimination experienced by women and girls with disabilities. Steps should be taken to eliminate the barriers that prevent them from accessing social protection programmes and ensure that social protection systems take into account both disability‐related and gender‐related factors in the design and implementation of such programmes. Non‐contributory schemes, in particular, play an important role as women with disabilities are often excluded from the formal labour market. The role of women with disabilities (including older women) as caregivers should also be acknowledged by providing them with appropriate assistance to perform care responsibilities without reinforcing patterns of discrimination and negative stereotyping (Sepúlveda and Nyst, [36] ).

Multiple and aggravated forms of discrimination

There are persons with disabilities across all population groups, including in those historically discriminated against or disadvantaged, such as persons of African descent, indigenous peoples, lesbian, gay, bisexual, transgender and intersex persons, and minorities. In the design and implementation of social protection programmes, attention should be given to the multiple and aggravated forms of discrimination faced by persons with disabilities belonging to these groups.

Social protection systems must also respond to the needs of heterogeneous groups within the disability community, including those that may be easily forgotten in policy‐making, such as deaf‐blind persons, autistic persons, and persons with psychosocial or intellectual disabilities. Impairment‐specific considerations may be relevant for the purpose of providing targeted support services. It is worth noting, however, that traditional disability‐welfare approaches de facto promoted inequality among the diversity of persons with disabilities by adopting legislation that benefited certain groups while excluding others. The deprivation of legal capacity faced by many persons with disabilities has also led to systematic discrimination in accessing their right to social protection and control over the support provided.

Key elements to build disability‐inclusive social protection systems Legal and institutional frameworks

The right of persons with disabilities to social protection should be included in national legal frameworks. Existing legislation generally falls short in guaranteeing this right in its full extent to persons with disabilities on an equal basis with others. Provisions related to persons with disabilities’ access to social protection must be included in disability‐specific legislation and in mainstream legislation and policy on social protection, including for instance legislation on education, health, employment, housing and social inclusion.

Institutional frameworks should also be reviewed to ensure that persons with disabilities are adequately included in social protection systems. In principle, these frameworks must bring coherence and coordination, rather than fragmentation, across programmes, actors and levels of government responsible for implementing social protection policies (Sepúlveda and Nyst, [36] ). In practice, however, disability‐related social protection initiatives are too often disconnected from the broader social protection coordination system and implemented in isolation by the disability agencies within the government, rather than as part of the main social protection strategy. These disability agencies often operate without the engagement and necessary technical support of the main agencies in charge of national programmes. Of additional concern is the lack of coordinated responses between national and subnational authorities, which can jeopardize the availability and quality of benefits and services within a country.

This fragmentation increases the likelihood of persons with disabilities being excluded from mainstream social protection programmes, thus limiting the scope, quality and adequacy of the services and benefits they receive. It should be ensured that all disability‐related programmes are considered as an integral part of their national social protection strategies and are not delegated solely to the responsibility of the government's disability agency. Efforts should also be made to take into consideration the needs of persons with disabilities in mainstream social protection programmes, and enhancing their internal coordination mechanisms to address those needs in a comprehensive manner.

System design

An assessment about how the design of social protection systems affects persons with disabilities is needed, it should cover in particular: (i) the balance between contributory and non‐contributory schemes and (ii) the balance between mainstream and specific programmes.

Persons with disabilities can be covered by contributory schemes but they have considerably fewer opportunities to contribute to such schemes than persons without disabilities (due to higher unemployment rates, economic inactivity and informal employment). Contributory schemes could play an important role in providing social protection to persons with disabilities and often provide higher benefits than non‐contributory programmes. Making provision for government‐financed contributions for certain categories of persons who are unable to contribute directly, or who have limited contributory capacity, can strengthen the universal protection of contributory programmes.

Together contributory and non‐contributory systems help reduce the social protection coverage gap experienced by persons with disabilities. Policy‐makers should ensure that services are sustainable, adequate and of quality in contributory as well as non‐contributory schemes. Steps should also be taken to ensure that social protection systems cover all persons with disabilities on an equal basis with others. Finally, continuity of benefits and services should be ensured when a person moves from a contributory scheme to a non‐contributory one, and vice versa.

To achieve universalization and inclusiveness, social protection must be as mainstream as possible and as specific as necessary: while mainstream programmes support the access of persons with disabilities to general benefits and services on an equal basis with others (including by providing reasonable accommodation), specific programmes provide them with access to quality mobility aids, devices, assistive technologies and other forms of life assistance, as well as to a range of in‐home, residential and other community support services (including personal assistance to live independently and actively participate in the community). Together, these programmes must cover services, devices and other assistance for disability‐related needs, and extra costs (UN, [39] ).

Disability benefits

Disability benefits play an important role in ensuring income security for persons with disabilities and, therefore, in realizing their rights and aspirations as productive members of society. While these benefits may take various forms, including in‐kind transfers or subsidies, the majority are in the form of cash transfers, such as disability pensions. Cash benefits are the preferred option because they entail lower administrative costs and provide individuals with a choice and control in selecting services and providers (Mont, [30] ). The majority of these are contributory and serve as income replacement in the event of full or partial disability. Although non‐contributory benefits are extremely important for persons with disabilities, they are available in less than half of the world's countries (ISSA and SSA, [26] ; ILO, [24] ; ILO [25] ). Also, in most cases, the grants provided through these schemes are insufficient to ensure an adequate standard of living or even to cover the extra costs of disability.

Disability benefits are fundamental for promoting the inclusion and active participation of persons with disabilities; however, if wrongly conceived, they could create disincentives for such participation. When disability benefits bundle assistance to cover disability‐related extra costs or access to health care together with income support aimed at reducing poverty, persons with disabilities may lose the entire benefit package if they gain a higher income than the poverty line or minimum income threshold. This presents a dilemma to persons with disabilities, where they must choose between securing a minimum but stable income, and seeking employment and further socio‐economic participation and contribution; the latter option bearing the risk of job insecurity or insufficient income to cover all expenses. Therefore, if not well designed, these benefits can in themselves become a “benefit trap” that leads to low labour force participation (UNHCHR, [41] , para. 61). This problem is further compounded when the disability benefits are linked to a precondition of being “unable to work” (as opposed to having a low income or a reduced earnings potential) as part of the eligibility criteria, which not only reinforces stereotyping of persons with disabilities, but also perpetuates their dependency on the benefits by eliminating any expectation of their entering the labour market.

To avoid this dilemma, States should unbundle income security and disability‐specific assistance to find the right balance between supporting labour inclusion and providing an adequate level of income security for persons with disabilities. The two sets of policies should be seen as complementary, rather than contradictory, in promoting the full and effective participation of persons with disabilities. Measures to facilitate the inclusion of recipients of disability benefits in the labour market must include transitional or “bridging” arrangements to enable them to retain at least part of the benefits (e.g. assistance related to the extra costs of disability, and in‐kind benefits, such as health care) until they reach a certain wage threshold, and to become eligible again without delay if they lose their jobs (ILO, [24] ).

It is important that States provide persons with disabilities with choice and control over their disability benefits. In fact, if the disability benefit is provided as part of a household‐related benefit, there is no guarantee that it would actually contribute to the social participation and inclusion of the person with a disability.

Targeting and eligibility

The targeting of persons with disabilities entails several challenges. First, eligibility conditions in social protection programmes rely either on definitions of persons with disabilities that often have a narrow medical focus or exclude specific groups, or include programme‐specific definitions, which may be limited to work capacity or medical assessments. The national definition of persons with disabilities must ensure conformity with the CRPD.

Second, it remains difficult to determine whether a person is part of the targeted group or not. For instance, some countries may lack the administrative capacity required for disability determination in urban, rural and remote areas. The heterogeneity of the disability community makes targeting particularly challenging, especially in the case of invisible or episodic impairments. In some cases, corruption or medical discretion can also affect the disability assessments. Therefore, disability‐targeting errors are very frequent (Mitra, [28] ).

Third, in the case of means‐tested programmes, income thresholds are usually determined at the household level through direct means‐testing or proxy means‐testing. These instruments might overlook the extra cost of disability, and an individual assessment of personal and environmental factors is hardly ever made. Thus, persons with disabilities with higher support needs tend to be overlooked.

Fourth, disability‐related services, devices and other assistance may also be subject to means‐testing, limiting the coverage of disability‐related programmes. Therefore, while poverty reduction programmes should include additional disability‐related expenditures, disability‐specific social protection programmes should not be limited in scope to the poverty threshold, without considering the disability‐related extra costs.

Fifth, the eligibility criteria of social protection programmes should not include factors that could directly or indirectly exclude persons with disabilities. For instance, in many countries child nutrition programmes operate only at childcare centres and schools. Since children with disabilities have fewer opportunities to attend school, many of them lack access to nutrition programmes. Older persons with disabilities are also usually excluded from receiving disability benefits owing to their age, yet pensions and other available benefits may not fully address disability‐related needs.

Lastly, further work, including research and international cooperation, is required to support States in the design of simpler, more effective and more holistic targeting mechanisms, which would also inform States about the barriers faced by persons with disabilities and the support they need.

Relevance of benefit packages

Social protection programmes must meet the standards of quality, adaptability, acceptability and adequacy for all persons with disabilities. Accordingly, programmes must be adapted to the needs of persons with disabilities in their local context; be acceptable considering the multiple discrimination they face; and provide benefits of an adequate amount and duration to enable beneficiaries to enjoy an adequate standard of living (CESCR, [ 3] ). In other words, benefits and services offered by social protection programmes must be relevant and consistent with persons with disabilities’ right to an adequate standard of living.

Disability‐related needs should be considered and addressed in all areas of the social protection system. In many countries, the lack of availability of services is problematic: health coverage, for instance, does not always include specialized health services or assistive devices that persons with disabilities may need. Thus, they must bear, with other members of their households, the cost of accessing those services or devices. Similarly, public employment and housing programmes often do not guarantee appropriate conditions for persons with disabilities to actually benefit from those programmes.

Benefits should be sufficiently high to enable persons with disabilities to afford the goods and services required to enjoy at least a minimum essential level of economic, social and cultural rights (CESCR, [ 2] ). The CRPD Committee has stressed the importance of taking into account disability‐related costs to ensure a sufficient allocation of benefits, in particular for children with disabilities and their familie The Committee has also recommended calculating benefits on the basis of the personal characteristics and circumstances and the needs of persons with disabilities.

Conditional cash transfer programmes must take into account disability‐related needs. However, there is growing evidence that the conditionalities attached to these programmes tend to exclude persons with disabilities owing to structural barriers. This includes, for instance, the lack of inclusive education that precludes children with disabilities from attending school or the lack of accessible information that impedes deaf persons from participating in training or meetings with the social services. In response, some conditional cash transfer programmes have opted to exempt persons with disabilities from the conditionalities that they cannot fulfil because of existing external barriers. While such exemptions allow persons with disabilities to fight short‐term poverty, they contradict the overall goal of investing in human capabilities to promote social inclusion and active participation, and represent a missed opportunity to address longer‐term poverty.

To be inclusive, programmes should support persons with disabilities in meeting the conditionalities established by cash transfer programmes. While allowing them to benefit from the programmes despite not meeting the conditionality criteria is a positive, if insufficient, measure, an intersectoral intervention is needed to guarantee access to the required services by persons with disabilities and their families. This support must also be available to parents with disabilities when they are not the direct beneficiaries, but are responsible for ensuring that the targeted members of the household meet the set conditions.

The implementation of programmes should not undermine the rights of persons with disabilities. In some cases, to access benefits, adults with disabilities are compelled to renounce their legal capacity or receive treatment and rehabilitation on a regular basis, including psychiatric treatment. In other cases, services are offered in segregated settings – such as special schools or sheltered employment – or otherwise in a way that is not compliant with human rights standards. Such practices are contrary to the intrinsic dignity of persons with disabilities and contradict the principles of non‐discrimination, participation and inclusion.

Non‐discrimination

The principle of non‐discrimination must be respected at all stages of a social protection programme cycle, including at the design, implementation and monitoring stages. States must ensure that social protection systems and programmes are designed, implemented and monitored in a way that takes into account the experiences of all men and women with disabilities, from the selection of beneficiaries to the delivery of services and benefits. Systems must address the structural barriers that persons with disabilities face to participate in society, including lack of accessibility.

To promote equality and eliminate discrimination, reasonable accommodation should be provided to persons with disabilities (CRPD, [ 4] , Art. 5 ( 3)), in all instances and whenever needed, in the provision of social protection programmes. In many countries, however, when it is recognized, the requirement of providing reasonable accommodation is limited to employment and therefore does not apply to social protection programmes. Reasonable accommodation is an obligation that is not subject to progressive realization and its denial constitutes discrimination (UN, [40] ).

Accessibility

Accessibility is a precondition for persons with disabilities to benefit from social protection on an equal basis with others. Without access to the physical environment, transportation, and information and communication, persons with disabilities are prevented from enjoying their right to social protection.

Lack of physical accessibility affects not only access to social protection programmes, but also to the provision of services and the delivery of benefits. Public and private infrastructure (e.g. schools, health‐care centres and housing) is often inaccessible to persons with disabilities. Similarly, cash benefits are paid to bank accounts, but bank services are not accessible. The same applies to the distribution of benefits in kind, particularly in rural and remote areas (Mont, [30] ).

Lack of accessible transportation can impede persons with disabilities reaching social protection services and can increase the cost of accessing benefits to the point of making them irrelevant.

Information, materials and communication pertaining to social protection programmes must not create barriers to the participation of persons with disabilities. Persons with sensory and intellectual impairments are often particularly affected. In fact, when information, materials and procedures are neither accessible nor easy to understand, persons with disabilities have no means of knowing about the existence of programmes and their requirements. Many persons with disabilities could be illiterate because of lack of access to education.

In this regard, the CRPD Committee has stressed that States should ensure that social protection measures and services are provided in an accessible manner, in accessible buildings, and that all information and communication pertaining to them is accessible (CRPD, [ 8] , para. 42). The Committee has also highlighted the importance of adopting measures to remove barriers to access to basic services, drinking water and sanitation in rural and remote areas, and to include organizations of persons with disabilities in the monitoring of their implementation.

Participation

Persons with disabilities must be actively engaged in the development of social protection systems. The Convention requires States to promote an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs on an equal basis with mandates to consult and involve persons with disabilities, including children with disabilities, in the development and implementation of legislation and policies, and in other decision‐making processes concerning issues relating to persons with disabilities.

Accordingly, persons with disabilities must be granted the opportunity to participate, through their representative organizations, in the planning, design, implementation and monitoring of social protection systems, at all levels of governance. Such participation ensures that domestic efforts to implement social protection systems are informed by the perspectives and experiences of persons with disabilities, and helps to engage and commit policy‐makers and civil servants.

In most cases, however, there is no consultation with persons with disabilities. Organizations of persons with disabilities need to be informed of ongoing efforts, and processes need to be clear, accessible and disability‐friendly, given that organizations of persons with disabilities are often under resourced and unfamiliar with the field of public decision‐making and their right to participate therein (CRPD, [ 4] , Art. 3 (c); Art. 4, para. 3; Art. 29; and Art. 33, para. 3).

Resource implications

The obligation of progressive realization requires States to take appropriate measures to the maximum of their available resources towards the full realization of the right to social protection. This concept should not be understood as discharging States from any obligations until they have sufficient resources. On the contrary, States must take constant steps to improve the enjoyment of the right to social protection of persons with disabilities, with a time‐bound plan and measurable benchmarks to help monitor progress.

To guarantee the progressive realization of the right to social protection, States should formulate strategies and plans that include realistic, achievable and measurable indicators and time‐bound targets, designed to assess progress in its implementation. In addition, States should adopt adequate laws and policies, and disburse funds to implement these plans and strategies. States must refrain from entrusting private charities with funding responsibility for persons with disabilities, owing to the unsustainability of this approach and the possible negative impact on the rights of persons with disabilities.

The obligation of progressive realization prohibits deliberately retrogressive measures in the exercise of the right to social protection (CESCR, [ 3] ). However, in practice, since the financial crisis of 2008, many countries have been reducing their social protection systems, disproportionately affecting persons with disabilities (Hauben et al., [22] ).

Lastly, international cooperation plays a crucial role in supporting national efforts for the realization of the right to social protection of persons with disabilities, for example by ensuring that official development aid is inclusive of, and accessible by, persons with disabilities; facilitating and supporting capacity‐building; enabling cooperation in research and access to scientific and technical knowledge; and providing technical and economic assistance, as appropriate (CRPD, [ 4] , Art. 32).

Conclusions

Securing the right of persons with disabilities to social protection must be a priority for States and the international community. Inclusive social protection systems, including national social protection floors, can contribute significantly to supporting the social participation and inclusion of persons with disabilities by ensuring income security and access to social services. They can also play an important role in fostering the realization of the Sustainable Development Goals for persons with disabilities. The inclusion of persons with disabilities in social protection systems is not only a human rights issue, but also a crucial investment for development that States cannot afford to miss.

States must move away from traditional disability‐welfare approaches and turn towards rights‐based ones, and must develop comprehensive social protection systems that guarantee benefits and access to services for all persons with disabilities across the life cycle. For that purpose, States should consider adopting a number of legislative, administrative and other measures, inter alia, recognizing the right of persons with disabilities to social protection in domestic legislation; mainstreaming disability in all national social protection strategies, plans and interventions; designing disability benefits in a way that promotes the independence and social inclusion of persons with disabilities; ensuring that eligibility criteria and targeting mechanisms do not discriminate against persons with disabilities; and guaranteeing that benefits and services offered by social protection programmes are relevant for persons with disabilities and consistent with the right to an adequate standard of living.

Footnotes

1 Address for correspondence: Catalina Devandas Aguilar, 150 route de Ferney, CP 2100, 1211 Geneva 2, Switzerland; email: Cdevandas@sr‐disability.org.

2 See also <www.un.org/development/desa/disabilities/convention&#x2010;on&#x2010;the&#x2010;rights&#x2010;of&#x2010;persons&#x2010;with&#x2010;disabilities.html>.

3 See <www.giz.de/expertise/html/16762.html>.

4 See also Sepúlveda Carmona in this issue.

5 Disability in‐kind transfers or subsidies include, for instance, free public transportation, free access to public services, free or subsidized food and free or subsidized assistive devices.

6 See: CRPD (12, para. 53); CRPD (6, para. 67); CRPD (9, para. 60); CRPD (13, para. 43).

7 See: CRPD (14, para. 44); CRPD (10, para. 54); UNHCHR (41, para. 80).

8 Conditional cash transfers, which are cash transfers allocated to eligible households on the condition that they comply with specified requirements (e.g. children's school attendance), are considered by some experts as non‐compliant with the human rights based approach (Sepulveda and Nyst, 36).

9 See footnote 1.

10 See: CRPD (7, para. 58); CRPD (11, para. 53); CRPD (5, para. 43).

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By Catalina Devandas Aguilar