Children with disabilities are the most vulnerable children. It’s an issue close to my heart since one of my children – Rebecca – is disabled: she has Downs Syndrome. We were living in Paraguay during her formative years but, despite significant needs, we received no support from the state: there was none available. This placed a significant strain on us as a family since we had to pay for all her support and medical costs while Sandra, my wife, was a full-time caregiver and, consequently, unable to take a job.
Yet, we were fortunate. When Rebecca was three years old, we returned to the United Kingdom where, despite the fact that I was an impoverished PhD student living on a meagre grant, our situation rapidly improved. We were suddenly able to access a range of free social protection services including a Child Disability Benefit – the Disability Living Allowance – that covered many of the extra costs incurred caring for Rebecca. Further, Sandra received a Caregivers’ Benefit until she was able to return to work as a teacher. We also enjoyed a universal child benefit for our three children, a means-tested housing benefit, free health care and a range of other developmental services – such as speech therapy – that played a critical role in Rebecca’s development. Nowadays, Rebecca – who is 25 years of age – is living a fulfilling, semi-independent life, which is possible due to her continuing enjoyment of a range of free services, as well as two disability benefits that cover most of her financial needs.
Rebecca was lucky: the vast majority of disabled children across low- and middle-income countries are not. Indeed, in many countries, the birth of a disabled child is regarded as a curse. During research undertaken on disability by Development Pathways in 2016 – funded by the UK’s Department for International Development (DFID) – we heard many stories of fathers abandoning their wives following the birth of a disabled child. The abandoned wives, particularly in the case of more complex and challenging disabilities, often gave up work to care for their children with disabilities while also experiencing substantial additional costs, including for medical treatment, therapies, education and transport. We heard stories of mothers selling their land to pay for their children’s therapy. Yet, once the money ran out, the therapy stopped and, without land, they struggled to achieve even a minimal level of subsistence.
Consequently, the birth of a disabled child means that many families in low- and middle-income countries fall into a vicious downward spiral, often ending up in absolute poverty. The children themselves are frequently hidden away, invisible to society, while missing out on a good education which sets them back for the rest of their lives. In some cases, we heard of mothers abandoning their disabled children, leaving them with their grandparents who were even less able to provide adequate care and support, in particular when they had no pension to rely on.
If child disability benefits were in place across low- and middle-income countries, the situation would be very different. Not only would families receive essential financial support, the disabled children themselves would become visible, thereby enabling the state to provide them with other key services. Disabled children would be much more likely to access school and, if states also commit to investing in good quality inclusive education and free health care, the life chances of children with disabilities would improve significantly.
Few low- and middle-income countries offer child disability benefits although there are some notable exceptions. South Africa provides a Care Dependency Grant to children with disabilities aged up to 17 years who ‘require and receive permanent care and support services.’ It is accessed by almost one per cent of all South African children and pays a transfer equivalent in value to the country’s Old Age Grant. Other countries offering disability benefits for children include Mauritius, Nepal, Uzbekistan and Vietnam while Vietnam also provides a caregivers’ benefit.
While the existence of these schemes is positive – and they can make a real difference to the lives of children with disabilities – they could still be strengthened. In South Africa, for example, the Care Dependency Grant does not even cover the additional educational and medical costs incurred by families. And, it certainly does not compensate parents who have given up work to care for their children. Furthermore, even when child disability benefits are available there is strong evidence that many disabled children cannot access them: in South Africa, for example, it has been estimated that almost half of eligible children are excluded.
Yet, despite these flaws, the situation for children with disabilities in these countries is much better than elsewhere. It is certainly a significant improvement on the challenges facing disabled children in countries implementing conditional cash transfers programmes (CCTs). CCTs frequently sanction those children with disabilities who are unable to attend school, even when the reasons are beyond their control, such as limited availability, inaccessibility, discrimination, high transport costs or lack of specialist teachers.
Even when CCT programmes take measures to reduce the exclusion of children with disabilities, the initiatives are unsatisfactory and discriminatory. In Jamaica’s PATH programme, for example, if children with disabilities cannot attend school, they are still allowed to access the scheme but only the health grant component, thereby missing out on the payment linked to education. In the Philippines’ Pantawid and Peru’s Juntos programmes, disabled children unable to comply with the condition can be replaced by another child in the household who can. And, when households have no other children, they use the approach implemented in Jamaica. Yet this still excludes families with disabled children who are struggling to comply with the health conditions, while also reducing the overall value of the transfer received. Since CCTs use poverty-targeting, many disabled children are also excluded by the targeting errors, which are, of course, substantial. There is also no evidence that the additional costs faced by families with disabled children are addressed: they still receive the same low-value transfer as other families.
If the international community is truly committed to ‘leaving no-one behind,’ universal child disability benefits must be prioritised across all countries. The level of investment required is minimal: the costs of South Africa’s and Uzbekistan’s child disability benefits are only 0.07 per cent and 0.15 per cent of GDP respectively. In a country like Kenya, we estimate that, a child disability benefit for all children – offering a transfer value equivalent to the universal Inua Jamii Senior Citizens’ pension – would require an investment of only 0.08 per cent of GDP. Costs would be similar in most other countries.
Yet, despite the irrefutable case for child disability benefits, I am unaware of any international donor offering support. Most prefer to fund poor relief schemes that actively exclude most children with disabilities and, in the case of CCTs, discriminate against them. As a British taxpayer, I’d love to see DFID using my taxes to fund child disability benefits around the world (while addressing the harm caused by poor relief). And, I’m sure that many other taxpayers across the world would feel the same.
Furthermore, while I’m very supportive of UNICEF’s initiative to promote universal child benefits, I’d like them to go further and include universal child disability benefits in their campaign, to ensure that no child – including the most vulnerable – is left behind. The situation of children with disabilities is an international crisis and establishing universal child disability benefits can go a long way towards addressing it. Action needs to be taken now.
Committing to universal child disability benefits also makes economic sense. A study across 10 low- and middle-income countries has estimated that the losses in productivity due to not effectively addressing disability range from 1 to 7 per cent of GDP. Let’s remember that disabled children possess a wide range of skills and talents that need to be harnessed and maximised and they have much to offer to their nations. Child disability benefits have an essential role to play in enabling disabled children enjoy the best start in life. Let’s work together to push the issue to the top of the policy agenda.
The author Stephen Kidd is a Senior Social Policy Specialist at Development Pathways and has more than 30 years of experience working on social development and social protection across Africa, Asia, the Pacific and Latin America. Prior to joining Pathways, he was Director of Policy and Communications at HelpAge International, a Senior Social Development Adviser at DFID (where he led the Social Protection Policy Team), a lecturer in Social Anthropology at the University of Edinburgh and worked for over 10 years in Paraguay on indigenous land rights.
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