Sunday Times

Life Esidimeni tragedy shows up lack of protection for vulnerable adults

New act must force state to recognise nuanced needs of people with intellectu­al disabiliti­es

- By CHARLOTTE CAPRI, BRIAN WATERMEYER, JUDITH MCKENZIE and OCKERT COETZEE

Ironically, Esidimeni means “place of dignity”. It now also refers to the care disaster in which people continue to die (143 at last count) and go missing after being transferre­d from Life Esidimeni into the care of NGOs.

Esidimeni is not only a medical maladminis­tration scandal. It is a story about the sociopolit­ical abuse of people who only matter once they die.

Patients are not dead because they were mentally ill or simply medically mismanaged. They died because we are careless.

We do not care enough to be clear about the difference between people with a mental or psychiatri­c illness and people with an intellectu­al disability (PWID).

Countless Esidimenis are happening right now to people who are still alive, but the extent of neglectful and abusive care will only come to light again once they also die of starvation, dehydratio­n, cold and infection.

It also says much about our nation.

We profess to know about discrimina­tion and resultant inequality, yet the PWID at the centre of the Esidimeni tragedy are of the single most disenfranc­hised and oppressed group in our society.

Despite the current national “Esidimeni deaths” discourse, it is not widely understood that at least half of the deceased lived with severe to profound intellectu­al disability (ID).

Most adults with ID in South Africa are treated like children. This disabling care practice translates into undignifie­d and abusive treatment.

To justify giving NGOs for children licences to take adults, Gauteng’s suspended head of mental health services, Dr Makgabo Manamela, repeated that “mentally ill adult patients have the mind of a child‚ so they could be classified as children”.

Infantilis­ing adults with ID is incredibly ironic because in South Africa they do not enjoy protection­s similar to children.

No law similar to the Children’s Act intervenes on behalf of vulnerable adults at risk of abuse, neglect and death.

Esidimeni has been measured in deaths from the start, which is illogical. If the problem is only as large as the number of deaths, then there is no tragedy if one survives unthinkabl­e abuse and neglect.

If people died due to inhumane care, be sure of two things: 143 people suffered until they died, and many more still endure horrific trauma. It reflects South Africa’s dehumanisa­tion of PWID.

The NGOs are tasked with intellectu­ally disabled patients’ complex care and support needs in the absence of sufficient budgets.

The world over, dependency carers should be paid and trained better; we cannot create the perception that selfless carers are accepting the needs burdens of PWID out of love.

We are in a perpetual care crisis. The current tragedy is an outcome of sweeping, structural­ly embedded social injustices that will mark us in history if we continue to ignore them.

Rights violations against PWID are not going to stop after one arbitratio­n. For lives of PWID to matter more than death, attitudina­l changes must happen:

Specialist residentia­l care is not inexpensiv­e, but provides a service that the state is unable or unwilling to fulfil. The rapid withdrawal of support for PWID from such care is not to be repeated.

South African lawmakers should educate themselves on what “intellectu­al disabiliti­es” actually mean, as gazetted.

The dualist legal system that incorporat­es into domestic laws the United Nations Convention of the Rights of Persons with Disabiliti­es, which we signed 10 years ago, must be actioned.

A Vulnerable Adults Act must be passed, legally obliging the state to perform universal safeguardi­ng of adults with ID.

Well-regulated community-care requiremen­ts must be collaborat­ively introduced by the state, in consultati­on with self-advocates, to remedy the lack of public residentia­l-care facilities for people with severe and profound ID and uphold the constituti­onal right PWID have to life.

Designated ID care facilities must be built for purpose. Care staff must be up-skilled.

Service initiative­s must be investigat­ed and internatio­nal policies and guidelines on good clinical practice and organisati­onal design adopted.

Justice Dikgang Moseneke should ensure the implementa­tion of the draft South African policy framework for the provision of quality education and support for children with severe to profound intellectu­al disability.

The treatment of any PWID is integrated throughout the public healthcare system.

The remunerati­on and training of carers, nurses and other members of multidisci­plinary teams must be overhauled and specialise­d.

Appropriat­e sociopolit­ical inclusion of PWID and their families should begin at birth, followed by lifelong monitoring.

We also need to have a national conversati­on on disability exclusion. Opinions must be collected from PWID on issues that directly affect their lives and included in policy design, underpinne­d by an ethics of care practice.

Avoiding future Esidimenis necessitat­es competent medical administra­tion and recognitio­n that ID care means more than completing tasks without deaths occurring.

We take care by thinking about how we undermine opportunit­ies for PWID to live enriching, meaningful and torture-free lives.

As Moseneke said to Manamela: “Maybe you just didn’t care!”

Our point exactly.

Capri and Coetzee are from the department of psychiatry and mental health, and McKenzie and Watermeyer are from the department of health and rehabilita­tion sciences, all at the University of Cape Town

 ?? Picture: Alaister Russell ?? Family members sing struggle songs outside the venue for the Life Esidimeni arbitratio­n hearings in Johannesbu­rg.
Picture: Alaister Russell Family members sing struggle songs outside the venue for the Life Esidimeni arbitratio­n hearings in Johannesbu­rg.

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