01 Mar 2022

Parenting and raising a child with disability or special needs is a lonely, frustrating and stressful business.

Ms Mysi Badenhorst from Cerebral Palsy Botswana Association said this when sharing the agony of raising a child with cerebral palsy with the Presidential Commission of Enquiry into the Constitution review on Monday inKanye in premise to her submissions. 

She stated that parents and caregivers of children with cerebral palsy condition had unique stressors and burdens and it seemed they were left to carry that burden alone. 

This, she said, was despite the existence of national policies for the support of people with disabilities. 

Ms Badenhorst, who has a child with the condition said their psychosocial burden was substantial as they endured aches and pains due to the heavy physical activity of caregiving. 

Children with the condition, she said, could not easily access health and education services as caregivers received no support. 

She decried lack of buffers on health expenditure, especially travel expenses to health facilities for constant treatment and physiotherapy of the child. 

“We suffer from depression, a feeling of guilt about our children’s condition due to the cultural stereotype that we might have done something wrong. We also feel isolated and unable to participate in social life,” she added. 

Ms Badenhorst also stated that due to the difficulty in balancing family and work, they had significant financial burdens because the burden of caregiving prevented them from finding gainful employment. 

Even working mothers, she said, found it difficult to save money for the future of their children owing the expenses associated with caring for a child with the condition. 

They could not even take care of their other children as they spent time tending to the child. 

In her submission to the commission, Ms Badenhorst proposed that the envisaged constitution should take into account their grievances with a view to improve the quality of life of caregivers and children with cerebral palsy. 

While, she acknowledged the disability welfare support offered by the government, she said it was grossly insufficient. 

She said instead there should be an allowance for caregivers to meet their needs. 

Ms Badenhorst said the government should ensure provision of accommodation to caregivers in areas where they access health services for their children adding that some social welfare policies must also cover at least some of the health care related expenses. 

She also called for an establishment of a ministry that would holistically mainstream issues of disability into the development agenda just like in other countries. 

The ministry, she said would lead the realisation of a true partnership between disability community and government as well as help drive transformation of the disability system in line with enabling good lives approach. A representative from Kanye Independent Leading Centre, an organisation that advocates for PLWDs Mr Mothusi Selefo supported the proposal to establish a ministry for disability community. 

The population census of 2011, he said had indicated that disability population had increased drastically and hoped the ministry would provide an opportunity to review the current support services offered to PLWDs. 

Currently, he said, they were worried about their future as they were treated like a burden because most of them did not know what support services they were entitled to. 

Mr Selefo was of the view that with the establishment of the ministry, they would be able to access services from one-stop centre as opposed to the current situation where they were tossed from pillar to post. 

He complained about the public transport services which were either completely inaccessible to PLWDs especially those using wheel chairs, saying there should be a section in the constitution that forces public transport operators to provide ramps to cater to them. 

Mr Isaac Nkganetsang from Botswana Society of People Living with Disability said the new constitution should ensure prohibition of discrimination in education, health and special needs services. 

He said it should promote dignity and equal opportunities to persons with disabilities adding that PLWDs should not be discriminated against a qualified person on ground of their disability. 

Disabled persons, he said should not be treated like patients, but they should be given an opportunity to practice their professions or venture into any business of their choice. 

w also concurred that there should be a provision in the constitution that ensured physical features in different premises/infrastructure did not place disabled persons at a disadvantage. BOPA