Caring for children living with disability

Samuel Ooko with his wife Lillian Anyango and their baby, Steve

Samuel Ooko with his wife Lillian Anyango and their baby, Steve.

Photo credit: Jeff Angote | Nation Media Group

What you need to know:

  • Recent years have seen renewed interest in generating reliable and internationally comparable data on children with disabilities, leading to the development of new tools for data collection, including the Child Functioning Module, released by Unicef and the Washington Group on Disability Statistics in 2016.

“It took us two weeks to realise that our son was born with albinism,” says Samuel Ooko Ondiek as we sit down to talk to him outside his one-room corrugated iron house painted blue on the outskirts of Kajiado town.

The father of five sons and married to Lillian Anyango Ondiek says that at first they didn’t know that their child had a disability until the hair of their nine month old Stephen Otieno did not turn black. 

Albinism is a rare genetic condition where the body is unable, or is limited in its ability, to produce melanin, the substance responsible for the colouring in skin, hair and eyes.

Theirs is a typical family in this part of Kenya but for one thing: four of the five children were born normal.

“My first reaction when I was told that my fifth son was born with albinism was just shock. I didn’t know what to think, but I immediately decided to love him. He was our son,” says Ondiek.

“His siblings were all born light-skinned, so I thought he would turn dark with time. Two weeks later, nothing had changed. It wasn’t until someone from the county who deals with children visited us and explained that the child needed some cream as he had a disability. She is the one who told us that our son was born with albinism.”

His wife says that when she gave birth, she wondered why his hair was slightly different and wondered what she could have lacked to give birth to a child with different hair.

“The doctor assured us that the child was healthy and there was nothing wrong with him,” said Lillian.

She was introduced to sunscreen, by Julie Minyos, the Kajiado County cordinator for the National Council for Persons with Disability (NCPWD) who saw the pain her child was experiencing after being exposed to the sun.

Ms Minyoso explained the condition to her and advised them to use sunscreen. But in many families, this is not the case. Some keep their children inside all the time, afraid of what neighbours might say, or because they lack knowledge of how to care for a child with albinism.

Often, the men choose to leave their wives as soon as the baby is born, arguing that it is not their child.

According to Unicef, 15 per cent of the world’s population – at least one billion people – have some form of disability, whether present at birth or acquired later in life. Nearly 240 million of them are children.

The Convention on the Rights of Persons with Disabilities (CRPD) defines living with a disability as having a long-term physical, mental, intellectual or sensory impairment that – in interaction with the environment – hinders one’s participation in society on an equal basis with others.

CRPD was adopted in 2006 in response to the severe human rights violations experienced by people with disabilities worldwide. It obligates governments to take concrete measures to promote their full and equal enjoyment of all human rights and fundamental freedoms.

Recent years have seen renewed interest in generating reliable and internationally comparable data on children with disabilities. This has led to the development of new tools for data collection, including the Child Functioning Module, released by Unicef and the Washington Group on Disability Statistics in 2016.

It has also resulted in a substantial increase in the availability of data on children with disabilities over the last five years, fostering new data analyses and contributing to increased knowledge generation.

Using the latest available data, the publication covers more than 60 indicators of child well-being – from nutrition and health, to access to water and sanitation, protection from violence and exploitation, and education.

The report also includes the first-ever global and regional estimates of children with disabilities.

Despite international commitments, children with disabilities remain largely invisible in research and programmes meant to build more equitable, inclusive societies.

This invisibility is both a cause and a consequence of their exclusion. But according to Ondiek, his son is just like any other. “Only the colour of his skin is different. Apart from that, everything is just like my other sons. Don’t sell or abandon your child because of their disability,” he said.

The myths about albinism in East Africa are many, and they vary between countries, but the general perception of the skin condition remains the same.

It is said that a person with albinism holds great power in their body and that if you give a limb to a witchdoctor he will make you rich. It is also believed that they are in fact ghosts and not human.

In countries such as Tanzania and Malawi, countless people with albinism have been attacked, and had their arms or legs chopped off with machetes. Many are reported missing. They live in constant fear of falling victim to someone’s greed for gold.

The situation is not as bad in Kenya, but the daily discrimination and lack of support from the government still makes life very hard.

The situation of mothers of children with albinism further exacerbates because of limited income opportunities. Young mothers of children with albinism give more attention to their children due to the risk of such children being stolen for sale.

This means they cannot work like other mothers. This situation worsened immediately after the pandemic struck. Covid-19 made the few who had economic opportunities lose them and now most of them are stay-at-home mothers who depend entirely on their husbands while the other half waits for odd jobs such as doing laundry for others to sustain themselves and their children.

Susan Momanyi, a social policy specialist at Unicef, says that families in Kajiado faced increased poverty, more began employing dangerous coping strategies and behaviours, which put the welfare of children and young people at risk.

As part of efforts to help reduce poverty, Unicef is currently piloting a programme called Universal Child Benefit or Child Grant, where they are moving towards a universal approach while moving away from targeting programmes.

According to Ms Momanyi, targeting programmes have been realised to be very expensive because of the administrative costs of going to the community, listing them and then hiring resources to do the econometrics to get the poor of the poorest.

“Universal Approach is very inclusive, every other person is able to receive it and it is cheaper and you know that everybody is cushioned. There is no exclusion to that.”

She adds that what the government is doing is looking at is moving to Universal Approach by 2032 and away from targeting programme.

“In particular orphans and vulnerable programme, we are looking at a progressive realisation where we start from 0 - 3 and after three years moving to another category. So, by 2032, all the children from 0 –18 now will be having a Universal Approach.”

At the moment, Unicef’s Universal Child Benefit is targeting Kajiado, Embu and Kisumu in their pilot programme.

Every child gets Sh800 per month and there are at least 8,300 children under the programme, which translates to 7,640 households have more than one child.

Primary healthcare and community health are the best way to prevent disease and protect children’s health. However, coverage of community health services in Kenya is 59 per cent. In some counties, it is much lower at just 17 per cent.

Primary and community health services are the cornerstones of universal health coverage. They help prevent ill health and deliver better healthcare for children at a lower cost. They can meet up to 90 per cent of a child’s health needs, including in times of crisis such as Covid-19.

This helps poor families avoid catastrophic costs, with almost ten-to-one ROI. “Therefore, we want the next government to increase budget for social protection to at least 1.7 per cent of the GDP, similar to other lower middle-income countries, and expand coverage, especially for children, moving towards universal social protection,” she said.

Multiple studies in different parts of the world have shown that providing cash transfers can improve food security and increase the number of people accessing health services, immunisations and school.

In emergencies such as droughts, floods – and pandemics – cash transfers are considered one of the most effective ways of supporting families as parents are best placed to decide what their children need most.

With a lump sum, they can purchase food, medicine, clothes and shelter as required. In areas where a cash transfer programme is already in place to help tackle poverty, emergency assistance can be distributed more easily and effectively. Existing beneficiary lists can be used, as the most vulnerable families have already been identified.