Feature by Hannah Awadzi
On March 21, Ghana joined the rest of the world to mark World Down Syndrome Day. The day was filled with activities led by various nongovernmental organisations.
Some hosted durbars to showcase the talents and skills of persons with Down syndrome and other disabilities, while the Ghana Association of Down Syndrome organised a friend walk and fun fair.
The Minister of Gender, Children and Social Protection, Agnes Naa Momo Lartey, joined the walk, encouraging persons living with Down syndrome and their families, pledging government’s commitment to support.
Among the initiatives she highlighted was the Livelihood Empowerment Against Poverty (LEAP) programme, designed to provide cash transfers to vulnerable households. Families were encouraged to sign up and benefit from these well-intentioned policies.
While commendable, invoking LEAP as a primary support system raises critical questions. It suggests that giving birth to a child with a disability automatically pushes families closer to poverty, leaving them with little more than donations and handouts often borne out of pity. Is cash transfer truly the most meaningful form of support for families navigating disability?
The Human Face of Policy Gaps
Special Mother Gifty shared her experience on the Inclusive Family Alliance Community Platform, an online space where parents of children with diverse disabilities engage in peer support, counselling, and solidarity initiatives.
Gifty had just completed hairdressing training and was preparing to set up her business when she became pregnant with her son Caleb. Her partner left for abroad, full of promises, but when Caleb was born with complications of birth asphyxia, neonatal jaundice, and infections, he was later diagnosed with cerebral palsy. Caleb’s father stopped sending remittances and even changed his contact number.
Gifty’s dreams collapsed. She and her son starved, surviving at times on sugar solution. When someone gave her GHS50.00, she began selling sachet water, leaving Caleb alone at home.
Caleb could only turn the head, he cannot do anything for himself, Gifty will say a simple prayer, “God protect my child” and go out in search of income.
“There are times I come home, and Caleb has had many seizures, bitten his tongue, lying in blood, his diaper full. I pick him up with tears in my eyes, but still thankful to God that he is alive,” she recounted.
While he sleeps, I must prepare for the next day, the stomach has no holiday, we need to eat to survive and we cannot be begging continually.
Later, philanthropists helped her learn soap and detergent production, improving her situation. Yet her greatest challenge remains where to safely leave Caleb while she works. “I wish there was a place I could send him in the morning, go hustle, and return for him even if I had to pay,” she said.
Gifty is not alone. Thousands of parents, especially those raising children with cerebral palsy, desperately seek respite.
Another mother, Selina, is pregnant while caring for her first child Gio, who also lives with cerebral palsy. Gio is growing heavier and requires full support for feeding, bathing, and diaper changes. Selina, with a history of difficult pregnancies requiring cervical cerclage, wonders how she will cope. Yet, where can she place Gio during this period?
That is why there is the need to think beyond handouts when thinking of social protection policies, there are high skilled professionals who became special needs parents and by virtue of that the only help that Ghana can offer is a handout as a form of support?
Beyond Handouts: A Holistic Vision
These stories highlight why Ghana must think beyond handouts when designing social protection policies. Disability does not equal poverty. Families of children with disabilities face unique challenges, but they are not inherently destitute. It is the absence of systemic support that pushes them into vulnerability.
True social protection must protect futures; it must recognize dignity, invest in resilience, and create opportunities for inclusion.
Programmes such as: Respite Care Programmes: Caregiving is demanding. Without relief, parents risk exhaustion and isolation. Structured respite programmes can provide temporary relief, allowing caregivers to rest, work, or pursue personal development.
Institutional Non-Family Care Options: Safe, professional environments for children with disabilities are essential when families need support. These institutions should complement family care, offering specialized services that enhance children’s development.
Inclusive Education and Employment Policies: Children with disabilities must have access to quality education, while parents are supported to remain in the workforce. This prevents economic marginalization and promotes long-term empowerment.
Care Economy Development: There is an opportunity for youth to build passion and careers in care work. Unlike many sectors, care work cannot be replaced by AI; it will always be needed.
Handouts, though well-intentioned, risk reducing families to passive recipients of charity rather than active citizens with rights. They perpetuate stigma, reinforcing the notion that disability equals poverty.
Social protection must empower families, strengthen resilience, and create pathways for dignity and inclusion. Ghana must embrace a holistic vision one that moves beyond handouts to build systems of care, education, and opportunity.
Families like Gifty’s and Selina’s deserve more than pity. They deserve policies that protect their futures, honour their dignity, and recognize their strength.
Hannah Awadzi, the writer, is the Online Editor at the Ghana News Agency and a parent of a person living with cerebral palsy, Hannah uses her lived experience as a parent caregiver to advocate for systemic change.
