SHARING THE RESPONSIBILITY OF CARING FOR CHILDREN WITH DISABILITIES

By Morapedi Sibeko

• ⁠A lifelong pathway of care: A DSD–JICA learning exchange in Japan showed how health, education and social development can support a child with a disability from early screening through school and into work.
• One door, one plan: Northern Cape Social Development HOD Shouneez Wookey proposes linking clinic developmental checks to a shared referral network, so each child gets an individual development plan from the start.
• Caring for caregivers: Shared budgets, an intersectoral agreement and stronger respite care would ease the burden on families and turn existing policy into services parents can reach.

Caring for a child with a disability is a profound act of love, but it is also a relentless, full-time responsibility. Between the physical demands of daily care, travelling to endless appointments and the emotional toll of constantly searching for help, parents and caregivers rarely get a moment to breathe.
Respite care can be a crucial lifeline. It gives families a much-needed break while ensuring their children are safe, cared for and valued. Sustaining this support cannot rest on the efforts of exhausted individual households. It needs a responsive state that supports the whole community.

To build this support network, the Department of Social Development (DSD) has partnered with the Japan International Cooperation Agency (JICA) to rethink how the country cares for children with disabilities.
A recent learning exchange in Japan brought South African officials from social development, basic education and health face to face with a system that works in unison. The delegation returned with a powerful lesson: government departments must break down their silos to properly protect a family.

A lifelong journey of support

The Northern Cape’s Head of Department for Social Development, Ms Shouneez Wookey, saw first-hand what happens when a family’s reality is placed at the centre of government planning. The Japanese model shows that when departments coordinate their efforts, support becomes a continuous, lifelong journey.

This care follows a child from the moment a developmental delay is first noticed, through their school years in inclusive classrooms, and into meaningful employment. A child’s life cannot be neatly divided into separate government portfolios.
To turn this idea into real relief on the ground, Wookey proposes a seamless starting point: linking routine developmental checks at clinics directly to a shared, cross-departmental referral network.

This would be a major shift. Instead of waiting for a child to fall behind, the system would step in early. Under this framework, an individual child development plan is drawn up from the start, serving as a living roadmap that ensures coordinated care at every stage of the child’s growth.

This single structural change can turn an exhausting bureaucratic ordeal into a journey of dignity. Parents would no longer have to navigate a maze of different offices or repeat painful personal stories to several officials just to receive basic help. Instead, a social worker would welcome them and connect them to a single point of support.
That professional could arrange medical therapy, custom wheelchairs, inclusive schooling and emotional counselling all at once. The burden of fighting the system would shift from vulnerable parents to a system designed to serve them.

Shared budgets, shared outcomes

Good intentions on paper need practical machinery behind them, and effective planning is impossible without a realistic, shared budget. When departments fund programmes in isolation, the safety net fractures, leaving unintended gaps that families fall through.

Aligning state funds around shared outcomes changes this. It requires sectors to pool resources and work as one team, creating an unbroken circle of care that carries a child from infancy into adulthood.
South Africa does not need to start from scratch. The Children’s Act and the White Paper on the Rights of Persons with Disabilities already provide strong, compassionate policy foundations. The urgent task now is to bring them to life through everyday cooperation, so that national commitments become practical, accessible services a mother can reach in her own community.

Making this permanent means formalising partnerships between social development, health, education and the non-profit organisations already doing much of the work on the ground. Clearly defined responsibilities, shared referral pathways and sustainable funding will allow these partners to hold each other accountable.
An intersectoral agreement would act as the glue, ensuring that when a family turns to the state for help, nobody passes the buck.

Adapting, not copying

This partnership with Japan is not about copying a foreign system. It is about taking universal lessons of coordination, efficiency and deep respect for caregivers, and adapting them to South African communities.
At the heart of this initiative lies a simple truth: caregivers need care too. No parent should have to choose between meeting their child’s needs and protecting their own health and wellbeing.

When government works together, it can support the child while strengthening the families who love them, giving them the community, dignity and rest they deserve.