Deborah Mangortey, mother of a child with Down syndrome, has called on the government to establish a free health care policy for children with complex health needs for the first five years of their lives.
She said a free health care policy will ensure that such children get all the necessary assessments and therapy recommendations and help the children get early intervention services
“Parents of children with complex health needs and disabilities are already burdened by the huge financial commitments that comes along with nurturing them, the system also puts stumbling blocks in the way of parents,” she said
Ms Mangortey made the call at the Special Needs Parenting Summit, a forum that brought together parents of children with Special Needs to dialogue on how they can make inputs into national policies.
She also advised parents to avail themselves for research purposes and share their stories publicly since that would help make systemic changes.
“Be interested in research and data collection, share your stories and make yourselves visible,” Ms Mangortey said, adding that disability was part of life and there is the need for parents of children with disabilities to make themselves visible.
The Special Needs Parenting Summit is aimed at amplifying the voice of parents of children with Special Needs in the formulation of national policies.
Mrs Serwaa Quaynor, mother of a man with autism; Mrs Mary Kuffuor, mother of a teenager with autism; Mrs Justina Yiadom Boakye, mother of a child with Osteogenesis Imperfecta; Mrs Lydia Bedwei, mother of a woman with cerebral palsy; and Madam Agnes Teiko Nyemi-Tei, mother of a girl with Down Syndrome; shared their success stories and called for unity and collaboration among parents to enable them make the needed impact in policy decisions
Madam Alice Appiah, Chairperson of the Gender Committee of the Ghana Federation of Disability Organizations (GFD) guest Speaker for the occasion, urged the mothers saying “some problems create opportunities for us”
She used the opportunity to educate parents of children with disabilities on the role of the GFD
Mrs Hannah Awadzi, Founder and Executive Director of the Special Mothers Project, said following the summit, a communique will be sent to the relevant Ministries, Departments and Agencies to inform their policy formulation on children with Special Needs.
The Special Mothers Project provides an online platform for parents of children with Special Needs to share ideas and experiences, network and engage in peer counselling.