Families raising children with disabilities need more than sympathy and occasional assistance; they need structured support systems that allow both children and caregivers to thrive, disability inclusion strategist and founder of The Wholesome Parent, Tamara Ajasa, has said.
Speaking during a PWDSpotlight X Space on “Raising Children with Disabilities: The Role of Parents, Communities and Society in Building an Inclusive Future,” Ajasa identified respite care as one of three immediate interventions she would like to see strengthened in Nigeria’s support system for families navigating disability.
Her proposal centres on a challenge that is often less visible in conversations about disability: the exhaustion of the people providing long-term care.
Ajasa argued that families caring for children, young people and adults with significant disabilities can become locked into an unrelenting cycle of caregiving, particularly where the person requires extensive daily assistance.
“Families navigating disabilities, where there’s a child or a youth or young adult with a disability, especially those who are severe, most of the time the primary caregiver, who usually is the mother—not all the time, but usually is the mother—she hardly gets a break,” she said during the conversation.
For Ajasa, respite care should not be understood simply as temporary accommodation. She proposed facilities where people with significant disabilities can receive appropriate care, learn practical or vocational skills and develop greater independence while their families get time to rest and recover.
“If the government can be intentional about respite care and create a facility—not just even one; create facilities where, as the disabled child is ageing and gets to that point where it’s difficult for the parents to take care of them, they can be in a place where they are well catered for, so that their families can have a breather,” she said.
The caregiver is part of the support system
The call for respite care emerged from a wider discussion about the realities of raising children with disabilities in Nigeria.
Ajasa described special-needs parenting as a long journey with “mountains and valleys,” arguing that the initial shock of discovering that a child has a disability is only the beginning of what can become a prolonged process of seeking assessment, therapy, education, healthcare and community support.
She said parents often need time to process the diagnosis or realisation before they can begin navigating the practical questions of how to support their child.
The next stage, she explained, often involves research, consultations with professionals and engagement with other parents and communities. But access to such support is not always straightforward.
In discussing assessment and intervention, Ajasa pointed to the limited availability of specialised services and the high cost of private care. She said parents who cannot afford private services may have to combine government services, private facilities, online research and whatever community support they can find.
The result, she suggested, is that the burden of navigating the system can fall heavily on families themselves.
That burden is not only financial.
When caregiving becomes a lifelong responsibility
Ajasa’s argument for respite care is rooted partly in what happens when a child with significant support needs grows into adulthood.
She described situations in which parents continue caring for their children decades later, including cases where ageing mothers remain primary caregivers for adult children with significant disabilities.
Her concern was not simply that parents need occasional relief. Rather, she argued that Nigeria needs to think about what happens to both the person with a disability and the caregiver over the long term.
Under her proposed model, respite facilities could provide care, skills development and personal-care training, while allowing families to step away from the constant demands of caregiving without abandoning their loved ones.
She included this proposal among three interventions she would prioritise for families navigating disability. The other two were stronger incentives for businesses that invest in disability inclusion and free or highly subsidised therapy and special-needs education.
The cost does not end with diagnosis
The question of respite care cannot be separated from the wider financial burden associated with disability.
Ajasa argued that for some families, therapy, medication and specialised education can become long-term or lifelong expenses.
“If not free, can it be highly subsidised?” she asked, pointing to the recurring costs faced by families whose children require ongoing therapy or medication.
She illustrated the pressure with an example of medication whose monthly cost, according to the experience she cited during the conversation, had risen from about ₦9,000 to ₦50,000.
“How do you want to do it?” she asked, underscoring the difficulty such recurring expenses can pose for families.
The implication is that disability support cannot be reduced to a one-time intervention. For many families, the need for support continues across different stages of life.
From individual struggle to public policy
For Ajasa, respite care is therefore part of a broader question about how Nigeria understands disability.
She argued that government has an important responsibility but cannot act alone. At the same time, she said government support for disability inclusion remains inadequate and that advocacy must continue to push disability issues higher on the policy agenda.
She also challenged corporate organisations to see disability inclusion as a structural responsibility rather than an occasional charitable activity.
According to her, companies should consider dedicating portions of their corporate social responsibility budgets to systems that produce sustained benefits for people with disabilities and their families.
“It’s not about charities. It’s not about going to give a bag of rice in a home of the disabled. No. Beyond that, how can you create structure? How can you design systems that actually help?” she said.
Her argument places the caregiver within the wider architecture of inclusion: if the family supporting a child with a disability is exhausted, financially stretched and isolated, the effectiveness of other interventions can also be compromised.
“This is not the kind of journey you do isolated”
Later in the conversation, Ajasa returned directly to the emotional burden carried by parents.
Responding to a question about what she would tell parents who feel overwhelmed or isolated, she urged them to approach the journey one moment at a time.
“Sometimes one day is a bit too long. It’s too long a stretch to even process, so you take it one moment at a time,” she said.
She also stressed the importance of building support networks.
“This is not the kind of journey you do isolated,” Ajasa said, encouraging parents to find communities, connect with other families and seek help rather than attempting to carry the entire burden alone.
For her, community itself can become part of self-care.
The message is significant because the disability conversation is often centred on the person with the disability while the wellbeing of the caregiver receives less attention. Ajasa’s intervention brings that hidden dimension into focus: supporting children with disabilities also means supporting the people who care for them.
A support system that looks beyond survival
The call for respite care ultimately raises a broader question about what an inclusive disability-support system should look like.
Ajasa’s proposal is not simply for parents to be given occasional relief. It is for a system in which children and adults with disabilities can access appropriate care, develop skills and receive support while their families have space to rest and continue their own lives.
That requires moving the conversation from emergency assistance to long-term planning.
It also requires recognising that inclusion does not end when a child enters school or receives a diagnosis. Families may need support across childhood, adolescence and adulthood, particularly where disabilities involve significant and continuing support needs.
For Ajasa, the responsibility therefore extends beyond individual parents. Government, schools, healthcare providers, communities and businesses all have roles to play in building systems that reduce the burden on families and expand opportunities for people with disabilities. Her wider recommendations during the PWDSpotlight conversation included disability training for teachers, greater representation of children with disabilities in schools and stronger corporate investment in inclusive systems.
