by Chantelle Kriel, CEO of Casa Caritas.

Most children with disabilities require care beyond what parents or primary caregivers can provide. In South Africa, many parents with disabled children struggle to earn a basic living, let alone afford the optimal care their children need.

And, if children with disabilities do not receive proper care, they can be at risk of developing malnutrition, aspiration from not being fed correctly and scoliosis, which is a sideways curvature of the spine due to a lack of adequate physical therapy.

Today, approximately 15% (more than one billion) of people globally have some form of disability. To highlight the plight of people with disabilities, the United Nations (UN) established International Day of Persons with Disabilities in 1992, which is celebrated every year on the 3rd of December 2023. The day is aimed at creating awareness of the many challenges faced by the disabled community and advocating for their rights and ongoing well-being. 

It also calls for the progression of persons with disabilities in all spheres of life. This includes political, social, economic and cultural life, ensuring that people with disabilities are given the opportunities to progress and play an active role in society. The care of persons with disabilities is also highlighted on this day as many disabled people need facilities where they can receive 24-hour care and attention, particularly young children.

Adding the numbers

Determining the actual number of children living with disabilities in South Africa is challenging, because most numbers do not include the full spectrum of disabilities. The definitions of disability may be broader in other countries. But in South Africa, these have historically been rigid and only include physical and sensory functioning, while overlooking psychosocial functioning.

The United Nations Children’s Fund (UNICEF) estimates that there are 29 million children with disabilities in Eastern and Southern Africa. All of them have the right to enjoy play and leisure time, responsive care and education and to receive adequate nutrition and social protection. All too often, these rights are denied due to reasons such as stigma and lack of accessible services.

The most common disability reported among children in South Africa is cerebral palsy, which is often caused by an injury to the developing brain. According to Stellenbosch University’s Department of Paediatrics and Child Health, it is estimated that for every 1,000 babies born every year, about 10 will have cerebral palsy. Causes include physical injuries, lack of sufficient oxygen at birth, infections, alcohol use by pregnant women and genetics.

Lifelong care needs

There are children who were born with disabilities because of a genetic condition that impedes their physical, mental or social development, or children who sustained a serious injury either during childbirth or in their formative years. Also, some children may have been nutritionally compromised or suffered from an infection that affected their long-term development. At Casa Caritas, we take care of children who need lifelong care.

The proper care of disabled people is imperative. They need to be in a safe space where their needs are acknowledged and they receive proper care and stimulation. They need a structured environment that includes a daily routine, a controlled and balanced diet, sensory stimulation, physical therapy, occupational therapy and several types of stimulation on apparatus designed specifically for each child’s disability.

When children with disabilities are not granted the rights and care that they are entitled to, they are not given the opportunity to survive and thrive in society. As a result, they’re exposed to a subpar quality of life and little hope of a promising future.

Beyond awareness days

International Day of Persons with Disabilities brings awareness to the different forms of disabilities and calls on society to ensure that all disabled persons receive adequate care. This is a basic right for disabled persons and is in line with the 2030 Sustainable Development Goals (SDGs). In 2015, all UN member states agreed on a call to action to end poverty, protect the planet and improve the prospects of everyone, everywhere.

The SDG’s are grounded in the Universal Declaration of Human Rights and seek to promote and respect the human rights of all people from all backgrounds. This is especially true for vulnerable members of societies such as women, children, older persons and persons with disabilities.

Persons with disabilities are members of our communities and families whose affliction is not their own doing. It is the responsibility of all South Africans to ensure they receive the respect, opportunities, acceptance and care that they deserve.

Care facilities such as Casa Caritas remain havens for disabled persons to receive the long-term care they need to thrive. It is our combined responsibility as members of society to stop discrimination of the disabled community and to remove the systemic barriers they face. This is important – not just on International Day for Persons with Disabilities, but every day. – Health-e News