Why caregivers of persons with disability also matter

Kenya has made tremendous progress in disability discourses since the pre-independence times. In recent times, we have gladly seen a sharp rise in media coverage of disability issues as well as an increase in developmental support from a wide variety of players—not to mention sustained government efforts and programmes.

This public awareness is driven towards alleviating the well-being of persons with disabilities (PWD) as equal citizens in our nation. However, a story that is untold and largely unseen is the silent plight of their caregivers.

People are likely to get moved by the visual of a PWD whereas caregivers are an afterthought—especially when they are non-disabled and also partly because they are assumed to be handling their role pretty well. But when viewed on the negative, they bear the brunt of stigma.

Recognising the need to address the plight of not only PWDs but also their caregivers, the government recently launched the “Support Needs Assessment Report for Persons with Disabilities and their Primary Caregivers”. It contains thought-provoking findings on the state of caregivers of PWDs.

In middle-income countries like ours, caregiving is largely provided by the family. The report says 94 per cent of the caregivers do not engage in an economic activity. There is no greater love and sacrifice than this—to lay down everything, to be vulnerable enough to stoop low and help a fellow human being. I experienced that 16 years ago, following the road crash that made me a wheelchair user.

Disability

The absence of any economic activity among caregivers adversely affects their families. Disability is an expensive lifestyle (need for assistive devices, therapy services, medical expenses) and yet the families of PWDs are the poorest. The government’s Inua Jamii programme caters for PWDs requiring 24-hour care, issuing the household with a monthly stipend. And, cognisant of the huge demand for this support, it recently embarked on a scale-up exercise.

PWDs’ families also lament that the cost of transporting their kin to a therapy centre is way higher than that of the service they seek. For the salaried caregivers, such out-of-pocket health costs stifle their families’ ability to handle day-to-day expenses, cope with emergencies and even make investments. This was also manifested in the report.

That leaves one prone to depression and stress. A sense of community is needed to offer psychosocial and spiritual support to the families. However, only 13 per cent of the caregivers are in a support group. Disability then becomes a major risk factor for poor mental health.

A plan to improve the well-being of PWDs requires concerted efforts across all stakeholders. It requires a relook at the need to subsidise therapy services for PWDs and also review tax policies to offer relief to their caregivers. Through the support of stakeholders, including development partners, we also need to offer economic empowerment packages to these guardians. Thus we will fight stigma and illustrate that caring for a PWD is not punishment. The society, too, cannot escape from its duty to promote inclusivity give a sense of belonging to these families and support their advocacy efforts.

Looking into the well-being of caregivers of PWDs is not just about a special interest group. As former US First Lady Rosalynn Carter, who was a caregiving advocate, said, “there are only four kinds of people in this world: those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Mr Hassan is the CEO of the National Council for Persons with Disabilities (NCPWD). [email protected].