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Esidimenis are going on all the time

Ironically, Esidimeni means “place of dignity”. It now refers to the care disaster in which people died (143 at last count) after being transferred from Life Esidimeni into nongovernmental and community organisations.

Esidimeni is not only a scandal of medical maladministration. 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 medically mismanaged: they died because we were careless. We do not care enough to know the difference between people with mental or psychiatric illness and people with intellectual disability.

Countless Esidimenis are happening right now to people who are alive, but the extent of neglectful care will only come to light when they die. It is an ongoing, silent catastrophe that implies the abuse of the living matters less than being neglected to death. It also says a lot about our nation. We profess to know about inequality, yet the people with intellectual disability are among the most disenfranchised in our society.

At least half of the Esidimeni deceased lived with severe to profound intellectual disability. Though psychiatric illnesses frequently accompany intellectual disability, they are different. People who live with intellectual disability and a co-morbid mental illness live with a dual diagnosis. People can live with intellectual disability and not have a mental illness.

Calling people with intellectual disability mentally ill obscures this distinction, and dismisses the particular care needs of individuals who live with either or both.

Most adults with intellectual disability are treated like children. This is a transgression of the right to dignity and affects their maturation. Gauteng’s suspended director of mental health care services, Makgabo Manamela, told the Esidimeni inquiry and Judge Dikgang Moseneke that “mentally ill adult patients have the mind of a child‚ so they could be classified as children”.

First, a PhD in psychiatric nursing should afford one the competence to differentiate mental illness from intellectual disability. Second, a logic that promotes the infantilising of adults with intellectual disability is ironic — this group does not enjoy protections similar to those given children.

The Mental Health Care Act and its General Regulation Amendment lack rights governance for adults with intellectual disability living in community settings. No law similar to the Children’s Act protects adults at risk of abuse. Government is not legally required to intervene on behalf of vulnerable adults.

Esidimeni has been illogically measured in deaths. If the “problem” is only as large as the number of deaths, then there is no tragedy inherent in the unspeakable abuse the “survivors” have endured and continue to endure. If people died because of inhumane care, be sure of two things: 143 people suffered until they died and many more continue to endure horrific trauma.

By measuring tragedy in deaths only, we reveal a binary appreciation of intellectually disabled lives in which “alive or dead” is the only meaningful statistic. This leaves no space for questioning the quality of life of living people. It also reflects the dehumanisation of people with intellectual disability.

NGOs are frequently tasked with the complex care needs of intellectually disabled people in the absence of sufficient budgets. Faced with this impossibility, it is asserted instead that, above all, “these people need love”. Turning NGOs into saintly providers of good deeds to the wretched of the earth obscures the cost of this “love”.

It is expensive to provide appropriate care that is therapeutic and developmental. Carers should be paid better, and we cannot collude with the perception that selfless carers are accepting these burdens out of love. It is unhelpful to pit the needs of carer against patient — both need to be looked after well.

We are in a perpetual care crisis. The current tragedy is an outcome of structurally embedded social injustices that will mark us in history if we continue to ignore them. We must face the reality that Esidimeni-like rights violations happen daily and won’t stop after one arbitration. Attitude changes must infuse the systemisation and implementation of intellectual disability rights for their lives to matter more than their deaths.

There are several solutions that can mitigate risk, including specialist residential care. This is not inexpensive but provides an essential service that the state is unable or unwilling to fulfill. We should not repeat the rapid withdrawal of support for people with intellectual disability.

South African lawmakers have to educate themselves on what intellectual disability means. The legal system should incorporate into domestic laws the United Nations Convention of the Rights of Persons with Disabilities that South Africa signed 10 years ago. A Vulnerable Adults Act should be created to legally oblige the state to safeguard adults with intellectual disability.

Well-regulated community care requirements should be approached collaboratively and with urgency by the social development and health departments to remedy the lack of public residential care facilities for people with severe intellectual disability and to uphold their constitutional right to life. Designated intellectual disability care facilities should be built-for-purpose and care staff upskilled. Service initiatives should adapt recognised international policies on good clinical practice and organisational design.

Government should ensure the finalisation and implementation of the South African Policy Framework for the Provision of Quality Education and Support for Children with Severe to Profound Intellectual Disability, which has been developed by the basic education department. Moseneke should consider in his recommendations the needs of people with intellectual disability and their carers by emphasising mutually respectful dependency-care relationships.

The treatment of any person with an intellectual disability should be integrated throughout the public healthcare system. Safe task-shifting to community-based resources should be supported, as should families willing and able to care for adult members with intellectual disability.

The remuneration and training of carers must be urgently overhauled, and specialised intellectual disability training offered. Registration requirements should keep practitioners up to date with best practice.

Demedicalised intellectual disability training should become an inter-disciplinary competence. People with intellectual disability should be carefully consulted on their treatment by trained practitioners. Future service designs could integrate the expertise of intellectually disabled people and their families — broadening practitioner understanding.

The commodified care of people with intellectual disability should be balanced with cost-free relational processes that consider the purpose and individualisation of care, as well as the power relations in all dependency-care relationships.

The appropriate sociopolitical inclusion of people with intellectual disability and their families begins at birth. Monitoring is lifelong. There are also risk mitigations we can apply to attitudes. We should overcome our avoidance of the must-have national conversation on disability exclusion.

The more than two million people with intellectual disability should be enfranchised and able to contribute to politicising disability issues, as has been achieved in Scotland and Sweden. Opinions must be collected from people with intellectual disability, included in policy design. People with intellectual disability can compel good care performance if they select their own carers as their self-identified care needs change.

We acknowledge that intellectual disability care also unfolds in boardrooms. At times when resources are scarce, we have to consider whose needs are being accommodated — “ours” or “theirs”.

National intellectual disability work should be infused by ethics of care practice, which helps government and society to change responses to intellectual disability. The ethics of care approach has the power to start conversations about our interdependent need for care, growing our shared understanding of what an inclusive society looks like.

We have to attend to the institutional forms and practices through which we express our care. We must reject bad intellectual disability care and unscrupulous resource distribution. We must object to professional power inequalities that leave us feeling uncared for.

Avoiding future Esidimenis requires competent medical administration. It requires the recognition that care means much more than completing tasks without deaths occurring. A person with severe to profound intellectual disability requires developmental care that will enhance their potential and allow them to achieve a good quality of life.

We take care by thinking about how we undermine opportunities for people with intellectual disability to live torture-free lives. We care by conducting ourselves constitutionally. Bad care dehumanises people by failing to meet both material and emotional needs. Good care honours them by increasing interpersonal reassurance, precisely because individual powers have failed.

As Moseneke said to Manamela during the inquiry: “Maybe you just didn’t care.” Our point exactly.

Dr Charlotte Capri and Dr Ockert Coetzee work in the division of intellectual disability, department of psychiatry and mental health at the University of Cape Town. Dr Brian Watermeyer and associate professor Judith McKenzie work in the department of health and rehabilitation sciences at UCT

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