Life Esidimeni’s Baneng Centre patients safe from relocation for now, but fight to safeguard the rights and dignity of those with chronic mental health disabilities continues.
The deep inequality of South Africa has a huge impact on access to mental health services, particularly for those dependent on the public health system. It means that poorer families who cannot afford to care for those with various mental health ails, including developmental disorders, are forced to leave their loved ones in the care of state subsidised institutions.
These are the circumstances into which Thando* was born. Thando* is 11 years old and has been diagnosed with both autism and cerebral palsy. He is currently being cared for at Life Esidimeni’s ‘Baneng Care Centre’. Both conditions are lifelong developmental disorders that require significant support and treatment. While autism varies from person to person and ranges on a spectrum, coupled with cerebral palsy, Thando has been left significantly disabled.
He has a variety health problems ranging from respiratory issues to muscular and skeletal ones. Left with no choice, his family made the difficult decision of placing him in the care of the centre, recognising their inability to provide him with the treatment and care that he needs. Even making their own home safe for him is out of their financial reach.
Earlier this year, the Gauteng Department of Health decided to cancel its contract with Life Esidimeni. This decision put 2000 patients at risk of being forced out of care. According to Thando’s father Hendry*, “no one from the Department of Health met with us, or even discussed options and plans for the care of the patients”. He went on to describe how he and other parents tried to contact the MEC of Health, but never received any response.
After engaging the affected families and various civil society groups, the government said it would extend its contract with Life Esidimeni to the end of June. But in March, the department made a u-turn, and began planning to forcibly relocate 54 patients to a child centre, which experts said not only put Life Esidimeni’s patients at risk, but also the children at the centre.
Obey*, another parent whose daughter is also at the Baneng Care Centre, says, “If they are cutting down the costs, why do they start with people with disabilities, given these people need care the most?” She added that, for many parents, placing their children in the care of the centre is not because they don’t want to look after them, but rather because they have no choice: “I could no longer care for my daughter Lebo* in the way she needed, both physically and financially, as I am a single parent with no support and have two other children that also depend on me”.
Lebo*, who is eight years old, was born with a condition called Neuro-Developmental Delay (NDD) which impairs the growth and development of the brain or central nervous system. Lebo is unable to use parts of the brain which control her speech and movement. This means she cannot walk, sit or talk; she is able to eat, but not all foods. Lebo has also been diagnosed with epilepsy, and thus must be constantly monitored for seizures.
Regarding the decision to terminate the contract, Lebo’s mother says, “I feel the MEC has made an unfair decision without consulting the children and families of the Care Centre. Has she ever looked after a mentally or physically disabled child or adult before? Let her do this on her own for a month without help or outside support, on a minimum wage, and you will see how quickly her decision will change”.
The parents, shaken up by the relocation of patients at Life Esidimeni’s Randfontein centre, started their own committee and appealed for help. At an emotional meeting April, parents discussed the fact that no response to their letter has yet been received from the MEC, and that the only updates they have received have come via public media. As of the end of June, they do not know where their children will be taken to.
In May however the families were met by Masenogi Molefe, a representative of the Health MEC, who let them know that Baneng Centre will not be affected by the non-renewal of the contract and who also apologised to the families for not letting them know.
While this is a huge relief for the families of patients at Life Esidimeni’s Baneng Centre, for those at the Waverley and Randfontein centres the situation continues to look bleak. Relocations of those in Randfontein, who are some of the most severe cases of chronically mentally ill patients, have continued and patients were expected to be completely out of the facility at the end of June.
The only way to safeguard the rights and dignity of these patients, is to ensure that all forced discharges are brought to an end. A clear plan that prioritises the well-being of patients and ensures their continuity of care is needed because expecting families and inexperienced NGOs to take responsibility could have serious consequences for all those involved.
* Names have been changed to protect the identity of the children.
– Featured Image: Life Healthcare