Are Cash Transfers a Means to Promote “Meaningful” Independent Living for Persons with Disabilities?
Despite progress made around disability and social policy in low- and middle-income countries (LMICs), there are still concerns that cash transfers in developing contexts may reinforce perceptions that persons with disabilities are dependent and incapable of work, rather than being a mechanism for meeting their needs and facilitating their empowerment.
Independent living as part of policy design is about supporting persons with disabilities (PWDs) to have choice and control over their lives and enjoy personal dignity and substantive opportunities to participate fully in work, family life, education, public, community and cultural life. Social protection systems should shift toward promoting the right to live independently and be included in the community. Until recently, social protection for persons with disabilities was viewed only within a medical and charity framework rather viewing them as rights holders with States as duty bearers. Thus, governments treated PWDs as patients in need of constant care rather than as productive members of society. International development projects mirrored these models, defining persons with disabilities by their medical and rehabilitative needs (the medical model) or as individuals needing social and economic support (the charity model).These models have been challenged over the past three decades by the human rights-based approach, which provides a clearer understanding of the constraints faced by persons with disabilities due to social, cultural and economic barriers, rather than being an inherent part of living with a disability. This view was strengthened by the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2006, which currently 160 member States of signed and 168 have ratified. The CRPD is the first international legal instrument that views persons with disabilities as equal rights holders. Its core message is that persons with disabilities “should not be considered ‘objects’ to be managed, but ‘subjects‘ deserving of equal respect and enjoyment of human rights”.
The CRPD does not offer a clear-cut definition of what constitutes disability, but clarifies that persons with disabilities include “those who have long-term physical, mental, intellectual and sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society with others”. This definition finally required policy makers to consider persons with disabilities as equal citizens with full rights, leading to the design of programmes with more appropriate goals such as achieving independent living (as stipulated in Article 19).
High-Income Countries and the Philosophy of Independent Living
Autonomy, self-determination and inclusion are at the heart of the CPRD’s goals, providing a framework for evaluating the situation of persons with disabilities and measuring their progress toward independent living on an equal basis with others. Yet, prior to the CRPD’s adoption, some European countries had taken a number of policy measures to this end, including de-institutionalization and direct payment schemes, which were promising developments toward persons with disabilities’ empowerment to choose and manage their own care.
The philosophy of independent living is that all individuals have the right to self-determination. This includes, among other things, the right to arrange their own care and other services, to choose the type of support they receive and how they receive it, and the right to manage their personal lives and participate in a community. This involves access not only to personal support services, but also to appropriate housing, transport, education, employment and training. Morris’ definition of independent living contains three main principles:
- the affirmation that persons with disabilities should have the same choices and control as non-disabled people;
- that the concept of independence does not rule out receiving assistance; and
- that the required assistance should be identified and controlled by persons with disabilities themselves.
Independent living emerged as a concept in the United States, the United Kingdom and the Nordic countries from the 1960s onwards due to the formation of self-help networks of persons with severe disabilities. In the late 1980s, persons with disabilities in the UK began campaigning for their right to live independently and demanded cash payments to cover their own needs, illustrating the importance of economic independence in realizing this right. In 1987, the British government approved the Independent Living Fund, a scheme that aimed to provide financial support for persons with disabilities to this end.1
A second landmark in the development of the concept in UK was the introduction of the Disability Living Allowance in 1992, which offered a new form of benefits to address persons with disabilities’ care and/or mobility. The 1996 Community Care Act (Direct Payment) expanded on persons with disabilities’ right to self-determination. Since then, direct payments—and more recently, personal budgets—have been promoted to provide choice and control for persons with disabilities. Although such direct payments have different implications due to the diversity of persons with disabilities; it is still a key achievement and a significant step toward the realization of full citizenship.
Social Protection Policies and Disability in Low and Middle-Income Countries
While progress has been made and documented in high-income countries, evidence on how the right to independent living has been implemented in LMICs is still lacking. Further research is needed on whether LMICs have yet foreseen direct payments as an empowering legislation that can enhance how persons with disabilities choose and control where, how, when and by whom their support is provided. In the absence of adequate government policies and financing to support the independent living model, many families have no choice but to provide such services themselves, which often results in an unhealthy dependency on family members, weakening opportunities for personal growth and independence.
Social protection as a policy framework has the potential to promote independent living rights for persons with disabilities in LMICs for two main reasons: its effectiveness in addressing vulnerability and social exclusion, and its relevance to human rights. National social protection initiatives have typically targeted the impoverished and marginalized groups of societies, but have failed to equally address PWDs. Social protection is an important mechanism for realizing the rights of persons with disabilities and guaranteeing non-discrimination in access to basic services such as health care, education and nutrition. It is being increasingly perceived as fundamental in achieving social inclusion and social justice rights in addition to tackling risk and vulnerability. Scholars along with UN agencies, donors and civil society recognize that social protection needs to look beyond income deficits and consider structural vulnerabilities and power hierarchies at all levels of society in order to effectively reduce social exclusion and marginalization.
In many LMICs, social cash transfers are the primary mechanism for tackling poverty and vulnerability. Such transfers can be unconditional or conditional, and/or targeted or universal. Although research on cash transfers in LMICs has received additional attention in recent years, little is known about the impact of cash transfers on of persons with disabilities, despite the greater attention and allocation of resources to these programmes in many middle-income countries.
The disproportionate rates of poverty among persons with disabilities have resulted that countries are less responsive to disability when providing social protection to poor individuals.
The international legal framework makes explicit reference to the right to social protection of persons with disabilities: this right is recognized in the Universal Declaration of Human Rights (1948) and the International Covenant on Economic, Social and Cultural Rights (1966), while the CRPD goes into further detail. Article 28 provides clear obligations for States parties to realize their right to social protection without discrimination due to disability, providing equal access to appropriate and affordable services and devices and other assistance with disability-related needs; social protection and poverty reduction programmes; assistance with disability-related expenses; public housing programs; and retirement benefits and programmes. State parties are legally obligated design social protection for persons with disabilities rather than simply a “policy option“. Standards adopted by the International Labour Organization, such as the Social Protection Floors Recommendation, 2012 (No. 202), complement these instruments and set basic minimum and higher standards of income protection, which should also be guaranteed to persons with disabilities.
More recent research has also begun to consider the intersectionality of barriers faced by persons with disabilities, such as gender inequality and discrimination based on ethnicity or refugee status. A conceptual shift in the way social protection is understood means that “transformative” social protection needs to consider equity, empowerment and social justice as well as material needs.
Conclusion and Recommendations
A strong argument can be made for using cash transfer programmes to meet persons with disabilities’ basic needs and secure their rights to self-determination and to live independently. In LMICs where there are limited provisions made to help realize the right to live independently such as support to personal assistant or any sort of disability allowance covering additional costs related to disability, alternative policy interventions should be identified.
It is also crucial to recognize the importance of adopting transformative social protection frameworks when addressing disability to ensure equal access based on a rights-based approach. Policy makers in LMICS should keep in mind four principles when designing cash transfer programmes for persons with disabilities:
- The adoption of a human rights framework;
- Inclusiveness in terms of coverage, effective access and outreach;
- Integration into larger mainstream social protection programmes; and
- The consideration of persons with disabilities’ additional daily costs (in comparison to non-disabled persons).
Despite the global expansion of social protection programmes, only a few LMICs implement inclusive practices with regard to PWDs. The design of social protection schemes for persons with disabilities needs to respond to the heterogeneity (in terms of types of disabilities, location, age, gender and more) of this group and the resultant diversity of their needs. Social protection for persons with disabilities needs to extend beyond poverty alleviation or reduction: additional support through disability-specific schemes is required in order to effectively address additional disability-related costs and promote greater participation, autonomy, and choice of persons with disabilities. The design of social protection strategies for persons with disabilities needs to consider environmental factors and challenges (such as the availability of services). Linkages need to be developed between social protection strategies and schemes and other relevant services, including rehabilitation and assistive devices, to promote access.
More evidence is needed to examine and discuss considerations for the appropriateness and feasibility of different types of cash transfers to persons with disabilities in an effort to provide equal access to social services and to enable them to choose their independent living needs and desires.
ABOUT THE AUTHOR
Ola Abu Al Ghaib is a researcher and consultant with almost two decades’ experience in disability, development and inclusive social policies in LMICs. Ola’s work has included policy analysis, programme design, management and evaluation, advocacy strategy, capacity development, qualitative research, and research with UN agencies (WHO, ILO, UNESCO), and local and international NGOs, including disabled people’s organizations. Ola has been a member of advisory bodies to support governments in social policy reform, and was recently involved in providing technical expertise on effective social protection policy.
Ola is currently a Ph.D. candidate at the University of East Anglia with a particular focus on social protection, disability, and inequalities of choice and autonomy; and disability assessment impact on access to social protection benefits & services