In resource-restricted countries like Nigeria, parents of children with special needs, particularly mothers, bear the entire burden of care.

In an unexpected turn of events in early 2015, Modupe Famodun’s baby son was diagnosed with cerebral palsy.

A neurologist at the Federal Neuropsychiatry Hospital (FNPH) in Lagos in South-West Nigeria, had been strolling down the hospital corridor when an unusual, shrill cry pierced the air, immediately drawing her attention. Her instinct, sharpened by years of experience, led her to believe something was wrong.

 Upon inquiry, she found out that the crying child was Tiolu, Famodun’s then two-month-old son.

Filled with empathy for the young mother, the neurologist rallied a team within the hospital to conduct a series of laboratory tests for little Tiolu without charge.

 “What is cerebral palsy?” Famodun recalled asking the neurologist after she disclosed the test result. Cerebral palsy is the medical term for a group of disorders that affect balance, movement and muscle tone. And now her son, Tiolu, has been diagnosed with it.

Unable to come to terms with her son’s cerebral palsy diagnosis, Famodun repeated the test at the Lagos University Teaching Hospital (LUTH) two months later.

 She was desperate for a different outcome, but reality soon hit her. The result was no different from the first.

“This was the moment that brought me to tears because I was completely unprepared,” she said, her voice quivering as she fought her emotions.

In resource-restricted countries like Nigeria, parents of children with neurological disorders bear the entire burden of care. The impact is even more profound on mothers, who assume greater caregiving responsibilities.

A study conducted by Andrew Olagunju, a Nigerian psychiatrist and researcher, highlighted that the severity of the child’s disability can have a significant impact on the caregiver’s psychological well-being.

Emotional roller-coaster

In the months following her son’s diagnosis, Famodun would grapple with overwhelming anxiety as she contemplated the chances of her son ever living a normal life.

“I shut myself in and cried endlessly, hoping on God for a miracle,” she shared.

During the initial two months of her self-imposed isolation, she could barely bring herself to touch her son except when she needed to breastfeed him. Her husband took on all the duties.

“I was lost, totally lost,” she admitted, harbouring guilt for Tiolu’s condition and blaming herself for the events surrounding his early days.

Three days after Tiolu’s birth in 2014, Famodun suspected he had jaundice but a senior family member played down her fears. By the fifth day, when she finally sought medical help, it was already too late. In fact, he was presumed dead at the hospital. Eventually, the doctor resuscitated him but hinted at possible brain damage.

The medical confirmation of Tiolu’s cerebral palsy brought back those painful moments from 2014. She wrestled with regrets, guilt, and sorrow all at once, and it felt like her pain had no end. “I felt responsible for his suffering,” she said.

After Famodun’s supervisor at work learned about her situation, she granted her a year’s paid leave. This period allowed her sufficient time to recover from the emotional turmoil and adapt to her new role as a caregiver.

Her husband helped her through this life transition. “My husband offered counsel on several occasions and taught me how to efficiently manage my time, ensuring I could care for Tiolu before leaving for work,” she shared.

However, as she grew stronger in her role, her husband’s support waned. Four years later, he lost his contract job and eventually stopped returning home, choosing instead to live in the church for the next few months.

Feeling abandoned, Famodun slipped back into depression. She was now left alone to cater for the family’s well-being and shoulder Tiolu’s medical expenses.

Cost of care

Stella Igbokwe, a young mother whose only child was diagnosed with hydrocephalus — a condition in which excess cerebrospinal fluid builds up within the fluid-containing cavities of the brain — disclosed that she spends more money on her child’s care than she earns from selling fruit on the street.

“I spend over 50,000 naira ($37) every month on my son, Stanley. Registering him at Flora’s Trust Centre [a formal caregiving home] costs 20,000 naira ($14.7). The rest covers his medications, diapers, special diet and transportation. It is not easy,” she lamented.

In his research, Olagunju noted that in countries with limited resources, caregivers not only play a crucial role in the well-being of these children but often bear the primary responsibility for their treatment.

He attributes this to the unequal distribution of healthcare resources and limited health insurance coverage in these countries, leading to high out-of-pocket expenses for families.

It is estimated that public spending on support for people with disabilities (PWD) in low- and middle-income countries is below 0.3% of GDP. This is in stark contrast to high-income countries, where allocations for such support can exceed 1.4% of GDP.

Weak policies

According to Article 28 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and its Optional Protocol, which Nigeria ratified in 2010, effective social protection policies must take into account the additional costs faced by people with disabilities from low-income backgrounds.

In a report by the Office of the High Commissioner for Human Rights (OHCHR), eight Nigerian states were recognized for adopting regional disability laws. However, only five of these states allocated funds in their 2023 annual budget for the implementation of these laws, with Lagos State, the focus of this report, being one of them.

Remarkably, the budget for the Lagos State Disability Fund, aimed at enforcing the 2011 Lagos State Special People’s Law (LSSPL) to safeguard the rights of people with disabilities in the state, was greater than the combined budgets of the other four states.

The LSSPL fails to make provisions for financial assistance for children with disabilities and their families living in poverty, as recommended in the CRPD, but it faces criticism mostly for its poor implementation.

In early 2023, allegations of fund misappropriation were made against the general manager of the Lagos State Office of Disability Affairs (LASODA), the agency charged with implementing the LSSPL and managing its funds.

Following the accusation, the then general manager of LASODA, Dare Dairo, failed to respond to the allegations, simply saying that his office lacked the authority to withhold funds. He also noted that the agency was working with local government officials to enhance healthcare access for PWDs. However, access to free healthcare remains an unfulfilled promise for people with disabilities in the state, as out-of-pocket expenses for treatment remain the norm.

Expressing her discontent with the governing board, Tobiloba Ajayi, a lawyer living with cerebral palsy who contributed to the development of the LSSPL, said, “The law is comprehensive and beautifully written. We put in all the work to get the law passed, and yet, implementation has continued to be lacking.”

Some respite for caregivers – but at a cost

The privately owned Flora’s Trust Centre was established by Chikaodili Ugochukwu, a 55-year-old mother with a teenage son living with cerebral palsy. Her decision was influenced by the challenges she faced in finding a suitable caregiving home for her son close to their place of residence in Lagos.

In Nigeria, the number of formal caregiving homes is limited and unevenly distributed. Quite a number of the well-maintained ones are owned by individuals or non-governmental organisations (NGOs).

 Mothers interviewed for this report have expressed disappointment with government-owned caregiving homes, citing poor living conditions and low staff-to-child ratios, leading them to dismiss these homes as viable options.

When Ugochukwu began the centre in 2018, it was exclusively dedicated to children living with cerebral palsy, but it was impossible for her to turn her back on mothers raising children with other neurological disorders. “Disability management is a herculean task,” she said.

Ugochukwu felt obligated to take in Igbokwe’s son to ease the burden on the young mother, who does not receive support from her partner.

“Once I drop him off at the centre, I feel a sense of relief, knowing I can focus on my work. My primary concern now is ensuring that I have enough money to pay for another month,” Igbokwe said. 

An unsustainable practice

Although there have been instances where children were admitted to the caregiving home  without paying the enrollment fee, Ugochukwu soon found that this practice was not sustainable.

 “We are non-profit, but in the meantime, we require parents to pay subsidised fees to cover our operational expenses until we can attract more sponsors,” she explained.

Ugochukwu revealed that it costs no less than 800,000 naira ($590) to keep the centre running. This covers their overhead costs and enables them to employ the services of professionals to offer physiotherapy, speech and occupational therapy for the children.

On the centre’s lemon-coloured wall, a whiteboard displayed the names of enrolled children. There were 11 names, although only five children were present at the time of this report.

Among the absentees was Ifedayo*, a 12-year-old girl living with cerebral palsy. Her mother, Ayomide*, a 49-year-old single parent, had not renewed tuition for that month because Ifedayo’s older brother was on holiday and would be supporting her at home.

When her husband was alive, Ayomide never considered caregiving centres because he effectively supported her at home, even at some point becoming Ifedayo’s primary caregiver.

“After my husband passed away, I was really under pressure,” said Ayomide, who became the sole breadwinner of the family.

 She said that it was impossible to make ends meet while providing round-the-clock care for her daughter. “I was struggling to meet deadlines at work, and not all my clients were understanding.”

 She stumbled upon Flora’s Trust Centre by chance and decided to enrol Ifedayo after learning about the centre’s weekly boarding services. This meant parents could drop off their children on Monday mornings and pick them up at the end of the week.

Even after she found that this would cost her 60,000 naira ($44.2)—significantly higher than the centre’s non-boarding services—she still went ahead with her decision.

“It’s not that I could afford the money, but commuting daily to the centre would cost almost double the amount,” she explained, referring to the mobility challenges she experiences when going out with her daughter, whose condition confines her to a wheelchair.

False hope

At first, Ayomide thought that diligently following her daughter’s treatment plan would help her recover. “But there seems to be no end,” she said.

Like those who came before her, she would realise that caring for children with special needs is a journey, not a sprint. 

“Many of these children will rely on their parents throughout their lives,” said Lillian Akuma, a physiotherapist at the Child and Adolescent Centre of the FNPH. She has been working with children and adolescents living with neurological disorders for 12 years now.

“What I often observe is that many caregivers are unprepared for the transition from childhood to adolescence and eventually adulthood,” she continued. She noted that health professionals who provide care for these children were partly to blame.

“In a bid to comfort parents, we give them the impression that it’s just a phase the child will outgrow. But that’s not always the case,” she explained.

These parents, clinging to this prognosis, become anxious to witness their children reach important milestones. “They hope to see their children stand, but after two years, if the children haven’t even achieved neck control, the parents become depressed,” she said.

“I have conducted research on caregiver’s burden and discovered that when they are in this mental state, they no longer put in their all to support their children,” Akuma said.

 “When caregivers fail to fulfil their roles effectively, we can’t expect positive treatment outcomes for the children,” she concluded.

A safe place

The Child and Adolescent Centre, an annexe of the FNPH, where Famodun’s son was first diagnosed, is one of the few facilities offering medications for children with neurological disorders.

However, it holds significance far beyond being just a healthcare institution for many of these mothers.

“The Child and Adolescent Centre is like a family house for me,” said Wemimo Akinwunmi, a 39-year-old mother of a son living with cerebral palsy. Her son, Ayomikun, had earned the endearing nickname “Ambode” from fellow parents at the centre, which was a nod to a former governor of Lagos State whose first name was also Akinwunmi.

Akinwunmi recounted when she ran out of money for her son’s medication and the other parents rallied to provide the outstanding amount. On days when she had enough, she returned the favour to other parents in need.

The centre has gained immense popularity for two key reasons: first, its specialised treatment for children with neurological disorders, and second, as a safe space where their parents feel genuinely understood.

Famodun disclosed that the centre played an important role in restoring her confidence. ‘In 2016, I was transferred to the pharmacy section of the Children and Adolescent Center, where I met numerous mothers who shared similar experiences. I learned so much from them,” she said. She also benefitted from the return of her husband, whom she described as supportive.

 These days, when parents visit the clinic, the nurses frequently turn to Famodun to address their concerns. “I went from being quiet to becoming an activist for my son,” she said, smiling proudly.

*Chikaodili Ugochukwu lost her teenage son some months after this interview was conducted.

*Some names have been changed to protect their identities.

*Naira exchange rates used were based on the time of report

This story was produced with the support of the Women Radio Centre and the MacArthur Foundation.

Image Credits: Samuel Okoro., Samuel Okoro, Kate Okorie.