Parents at the Frontline: Turning Lived Experience into Disability Advocacy

Featured Updated: 24 February 2026 19:06 EAT

BY BILL CLINTON

On the latest segment of STATE OF DISABILITY, the spotlight turned to the people who live disability inclusion every day- parents.

Faith Mbusi, a parent of a child with Down syndrome and Media Coordinator at National Coalition for Parents of Children with Disabilities (NCP-CDK), alongside Mrs. Wincate, a parent to a child with hearing impairment, share their stories, grounded in lived experience, revealing both the gaps in our systems and the power of organized parental advocacy.

At the heart of the conversation was a simple truth: parents need spaces to organize, share information, recruit, and support one another, not just to cope, but to advocate for solutions.

Faith underscored the economic strain many families face. Therapy sessions are costly. Transport to health facilities is expensive and time-consuming. She emphasized the urgent need for prioritized tax exemptions for disability-related services and equipment, noting that these costs are not optional, they are essential to a child’s development.

Accessibility was another critical concern. Faith called for balanced distribution of health centers across regions and proposed mobile therapy services to reach families in underserved and rural areas. She also highlighted the need for adequately resourced special needs services, including trained professionals, assistive devices, and inclusive learning materials that genuinely support children in schools.

Her message to parents was clear and unwavering:

“Advocate. Advocate. Advocate.”

Change, she noted, rarely comes without sustained pressure from those most affected.

Mrs. Wincate added a deeply important dimension, mental health.

Caring for a child with a disability can be emotionally demanding, especially in the face of stigma and isolation. She emphasized the need for psychosocial support for parents and caregivers, alongside stronger collaboration with organizations of Persons with disabilities (OPDs) and donors to fill urgent gaps where state support falls short.

She also issued a powerful call to parents: to fully embrace their children and fight stigma relentlessly, in families, communities, schools, and faith-based spaces. Acceptance, she reminded us, is the foundation upon which advocacy is built.

Together, Faith and Mrs. Wincate reinforced a vital point: disability inclusion cannot succeed without parents at the center.

Forums, like the National Coalition for Parents of Children with Disabilities (NCP-CDK) that connect caregivers across counties are not a luxury, they are a necessity. They enable parents to share information, mobilize collectively, and demand accountability so that policies translate into real support.

This conversation was not about sympathy. It was about care, dignity, access, and rights- and the urgent need to move from conversation to action.