The month of March is Intellectual Disability Awareness Month. This occasion allows us to look back at the past, examine the present and envisage the future we want for people so-situated. Importantly it is an opportunity to learn more about intellectual disability and how to eliminate stigma surrounding such individuals. People with intellectual disabilities are chronically underserved and often bear the brunt of the failure of duty-bearers to take responsibility for vulnerable individuals. In view of this occasion, SAFMH has issued a press release on the subject. It appears below.
For centuries, people with intellectual disabilities have been systemically excluded from ordinary societal life. Treated as second-class citizens, such individuals have been isolated and placed in environments where they are often warehoused like unwanted and defective products, as opposed to being treated like human beings, deserving of inclusion, dignity, respect and a high quality of life. While there have been significant present-day attempts to change attitudes and integrate such individuals into employment and educational settings and also into communities, for many, the situation has not changed much, with the effect that people with intellectual disabilities continue to languish, living without purpose or meaning.
In its 2019 campaign for Intellectual Disability Awareness Month (March 2019), the South African Federation for Mental Health (SAFMH) intends to make an attempt to combat misconceptions surrounding intellectual disability and to show that not only do people with intellectual disabilities have the capacity to lead fulfilling lives, but also the ability to make meaningful contributions as responsible and productive members of society. Our campaign intends to blot out the differences between people living with intellectual disabilities and their non-disabled counterparts, showing that we are all human and deserving of dignity and opportunity. Our campaign is thus entitled “We are all pieces of the same puzzle.” It will canvass three areas. First of all it will look at the construct of people with intellectual disabilities being entitled to education, second the right to employment and third the right of people with intellectual disabilities to live in their communities. The aim is to show that when placed in conducive conditions, people with intellectual disabilities can not only survive, but thrive, to the benefit of not only themselves and their own betterment, but for the betterment and strengthening of society at large.
Learners with intellectual disabilities are all too frequently left behind. In 2016 Human Rights Watch estimated that up to 600 000 children with disabilities were out of school in South Africa. Many of these were children with intellectual disabilities. Extant law and policy such as the South African Schools Act or Education White Paper 6 on Special Needs Education: Building an Inclusive Education and Training System (White Paper 6) are implemented at sluggish rates and the Constitutional entitlement of everyone to basic education is flagrantly flouted. Levy (2017) discusses the challenges associated with the education of learners with disabilities, citing waiting lists, that special schools have not been declared no-fee schools and the lack of schools in rural areas as important challenges. The Department of Basic Education (2017) indicates that there are 464 special schools and 715 full service schools in the country, but this is simply not enough to cater for the amount of learners in need of a quality education.
Progress has been made with the release of the Draft Guidelines for Resourcing an Inclusive Education System (Guidelines). The Guidelines are comprehensive and serve to make provision for education for children with disabilities more tailored to the needs of the specific child. This is integral and we commend the Department for Basic Education for having done so. It is our hope that these Guidelines can be finalised and implemented expeditiously, but with South Africa’s poor track record with implementing policy there is a good chance that this may not be the case.
Frequently cast to the wind are the chances of a person with an intellectual disability obtaining gainful employment. In South Africa only 1.2% of the workforce are people with disabilities, according to the 16th Commission for Employment Equity Annual Report, in comparison with the 2% employment equity target for employment of persons with disability. This can be attributed to aspects such as stigma, low skills levels due to inadequate education, inaccessible and unsupportive work environments, ignorance in society and inadequate access to information. Despite these challenges, the reality is that persons with intellectual disabilities can successfully perform a wide range of jobs, and can be dependable workers. They can also add a variety of skills and values to the workplace if they are given the opportunity to do so. The mere fact that a person has an illness or disability, does not mean that they ought to, by necessary implication, be unemployed or considered unemployable.
Within the South African context, the Basic Conditions of Employment Act makes provision for what is known as reasonable accommodation. This concept denotes making justifiable allowances for an employee with an illness or a disability who can still fulfil the inherent requirements of their job provided certain adjustments are made. Reasonable accommodation can take many forms, and its applications can differ dramatically from person to person. These provisions are not intended for the employee to end up with a diminished output, but simply to create a conducive environment for the employee to fulfil his or her obligations to the organisation.
Sometimes people with intellectual disabilities cannot enter into the open labour market or need to learn skills before they can do so. One of the mechanisms through which such individuals can be gainfully employed either permanently or in providing them with requisite skills to move on is through what is known as protective workshops. Protective workshops are generally run by NGOs at community level and are extremely important as they are a means through which people with disabilities who otherwise would not have the opportunity to acquire gainful employment can gain skills and receive support to – where possible – empower them for the open labour market. This gives them a sense of accomplishment and dignity; something of which they would otherwise have been bereft.
Institutionalising people with intellectual disabilities is a practice that has existed for millennia. The state and families often place such individuals in settings where they become invisible to society and where they are largely forgotten about. In a world abounding with liberating international instruments and in a country with a Constitution espousing dignity, equality and freedom, this is patently unacceptable. In addition to this, this practice is wholly unnecessary for as has been articulated, many people with intellectual disabilities can flourish within society, carving out meaningful lives for themselves that, as articulated, also benefit others. Thankfully, a growing body of knowledge shows that deinstitutionalisation and the implementation of what is known as the recovery model can greatly improve the outcomes of people with intellectual disabilities.
Deinstitutionalisation, according to Peterson (2004) is “the policy of discharging patients with mental health problems and/or intellectual disability from hospitals so that they can be placed in the community, and the decentralisation of mental health services [that] thus integrates into primary health care.” According to Jacobs (2015) the recovery model refers to a person “staying in control of their lives.” He refers to it as “a process, an outlook, a vision, a conceptual framework or a guiding principle.” He argues that the focus should not be on treatment and management of symptoms, but rather on the building of resilience and providing people with the tools to regain a meaningful life.
The World Health Organisation Europe (2003) published a study on community-based care. It highlighted the benefits and described the role of institutions as a back-up. This is an important consideration because sometimes hospitalisation would be necessary to aid in a person’s recovery or to contain a relapse. It should not, however, be the first or only port of call for people with intellectual disabilities. What is important is that such individuals receive the requisite amount of support living in their communities, be it through professional intervention, social welfare or support from peers and loved ones.
South Africa’s major move to implement the recovery model and deinstitutionalisation came in the form of a decision taken by the Gauteng Provincial Department of Health to remove patients with mental illness and intellectual disability from 4 psychiatric hospitals and place them in community-based care settings run by non-governmental organisations (NGOs) that were wholly ill-equipped to care for them. This had catastrophic outcomes, coming in the form of the Life Esidimeni tragedy in which 144 people lost their lives due to starvation, preventable illness and overall poor care. This has been hailed as the greatest en masse human rights violation since the Apartheid Era. This represents even worse human rights violations than if the individuals concerned had remained institutionalised and flies completely in the face of what deinstitutionalisation is intended to accomplish.
SAFMH is a non-governmental organisation seeking to uphold and protect the rights of people with mental illness, psychosocial disability and intellectual disability. For Intellectual Disability Awareness Month we will be engaging in an array of activities including drafting of policy briefs on the subject matter of our campaign, a policy dialogue and activities with people with intellectual disabilities. We call upon the state, families and friends of people with intellectual disabilities, educators, employers and other community members to take action and to bring people with intellectual disabilities out of the shadows and liberate them, giving them a sense of hope and dignity. We call too upon people living with intellectual disabilities to engage in self-advocacy and to fight against the stigma that has bound them. We are all pieces of the same puzzle if only we are put together into one. Let us end this division and grow into an inclusive society. #takeyourplace
Project Leader: Information and Awareness
South African Federation for Mental Health
011 781 1852
072 2577 938
On 14 February, scores of children were removed from the care of 2 Môrester Children’s Homes and from the House Mea Children’s Home all located in Kwa-Zulu Natal. The removal took place on the strength of untested allegations of abuse and racism. Officials of the Department of Social Development accompanied by police swooped in and removed the children without a court order. According to the Children’s Act, such removals can only be enacted in emergency situations where the children concerned are in imminent danger.
The Children’s Act also provides for automatic judicial review of removals of children in the absence of a court order, according to which the matter must be brought before the court before the expiry of the next court day. This is a feature derived from the case of C and Others v Department of Health and Social Development, a Constitutional Court case that led to the amendment of the Act. When the Môrester and House Mea matter did eventually come before the court on 20 February, the presiding officer ordered that the children be returned to the Children’s Homes.
Failure to obtain evidence of an emergency situation is thus very serious. Removing children summarily without just cause is patently unconstitutional as it violates the rights of the child in terms of section 28(1) of the Constitution – that a child may not be made subject to abuse and degradation – and section 28(2), that the best interests of the child are of paramount importance in all matters concerning the child.
While this does not address – or serve to prove or disprove - allegations of wrongdoing on the part of the Children’s Homes, what it does mean is that the Department of Social Development’s brazen actions were unfounded and that they could have gone to court prior to effecting the removals. Added to this, the Department could not provide any of the requisite documentation necessary for the removals to occur in the first place. In the view of the South African Federation for Mental Health (SAFMH), this represents a serious transgression in terms of the Constitution as well as the Children’s Act.
The aspect that predominantly concerns our organisation is the mental health of the children concerned and the trauma they must have undergone during the removal process. Children residing in a child and youth care centre are children living outside of the family setting and who have often undergone the distress of a parent passing away, or have experienced abuse. This already renders them more vulnerable than most children and their need for stability is thus increased. Removing the children without following the necessary legal processes and ensuring that the necessary protective mechanisms, which safeguards their emotional well-being, is frankly reckless. The removal of children in this manner is frightening and, reinforces their experience of instability and mistrust of older people who have the power to upend their reality. This can be a catalyst for poor mental health and can even lead to the onset of a mental disorder.
The words of Judge John Murphy are poignant here. In the case of Centre for Child Law v MEC for Education and Others, he stated:
“I have to pause here, perhaps in a moment of exasperation, to ask: What message do we send to the children that they are to be removed from their parents because they deserve better care and then wholly neglect to provide that care? We betray them and we teach them that neither the law nor state institutions can be trusted to protect them. In the process we are in danger of relegating them to a class of outcasts, and in the final analysis we hypocritically renege on the constitutional promise of protection.”
This situation harkens back to the Life Esidimeni tragedy in which the Gauteng Department of Health executed a reckless and dangerous operation of rapidly transferring mental health patients en masse from four psychiatric hospitals to nongovernmental organisations (NGOs). The NGOs were wholly ill-equipped to care for the patients, resulting in the death of 144 individuals from preventable diseases, starvation and overall poor care. The series of decisions taken to enact this process – hailed as “Project Marathon” by the Health Ombudsman – was taken thoughtlessly with dire consequences. It was as though they were taken on impulse without considering what kind of outcomes awaited the individuals concerned. No efforts were made to ensure that facilities were appropriate, that the staff were qualified or that the NGOs were adequately resourced. No heed was paid to the cries of civil society that disastrous results could ensue should the operation be executed.
Indeed, it appears that the state has taken no lessons from Life Esidimeni. There still appears to be a perception within the state that reckless behaviour is acceptable and that government can act on impulse, even outside the Constitutional parameters and those established by enabling legislation. Such were the actions surrounding the Môrester Children’s Homes as well as House Mea Children’s Home.
We presume neither innocence nor guilt on the part of the Children’s Homes. That is the purpose of the investigation that is currently under way. We merely wish to highlight the potential ramifications of the removal, and that the state’s approach in this situation was reckless and ill-considered. After Life Esidimeni, it was the hope of civil society and other stakeholders that the state would begin to approach matters differently. Unfortunately this appears not to be the case. The question arises how many disastrous events have to ensue before the state learns its lesson? How many people have to suffer before government officials see the error of their ways? The short answer appears to be not any time soon.
Dear Honorable President,
RE: FAILURE TO IMPLEMENT LEGAL IMPERATIVES SURROUNDING MENTAL HEALTH CARE IN SOUTH AFRICA
First of all, we thank you for your attention. While mental health is certainly an unrecognized and neglected focus area, we note efforts to bring to light the failures in the system. It is our hope that these efforts will serve to realise the rights of people with psychosocial disabilities and intellectual disabilities. Today we wish to bring to the fore the failure to implement the laws and policies of the Republic as they relate to the mental health system with reference to the Life Esidimeni Tragedy and beyond.
First of all, we wish to remind you of mental health in the global context and of the international obligations of the Republic:
Globally, mental illness is strongly linked to health and social inequalities, and these inequalities affect large groups of people, whether these groups are defined socially, economically, demographically, or geographically. Certain groups in society are more vulnerable to experiencing mental health inequities, including: black and minority ethnic communities, homeless people, victims of violence and abuse, people living with disabilities, women and children. Those with severe mental illnesses are more likely to experience some of the most severe health inequalities. Inequalities in mental health and the dilapidated state of psychiatric facilities have significant ethical implication which involve key bioethics principles of medicine and public health that involves: respect for individuals, justice (equality and fairness), promotion of good, and to do no harm.
As a Member State of the United Nations and World Health Organisation, South Africa has an obligation towards the agreements adopted or endorsed at this level to ensure that its citizens’ human rights, health and mental wellbeing are underpinned in all local policies and legislation. At this level, world leaders have committed to recognise prevention and treatment of non-communicable diseases, of which mental, neurological and substance use disorders are included, as health priorities within global development. There can be no sustainable development without mental health and none of the Sustainable Development Goals can be achieved without prioritising mental health.
We turn now to national imperatives:
Chiefly, the Constitution of the Republic of South Africa (CRSA), Mental Health Care Act and the White Paper on the Rights of Persons with Disabilities as well as the Mental Health Policy Framework and Strategic Action Plan (MHPF) and National Development Plan are concerned with the right of dignity of service users. This is so because dignity is a right from which others flow- there is no real right to access to health care without dignity, for example. Other rights similar in nature are the rights to equality and life. Further applicable rights- those flowing from the aforesaid entitlements- are the rights to freedom and security of person and the right to a clean and healthy environment. We draw your attention to these rights, Honorable President, because they have been neglected, extinguished even, in respect of those among society’s most vulnerable. Applied correctly, the aforesaid instruments can facilitate the realization of each of these legal guarantees.
Honourable President, it is clear, the requisite instruments for creating a comprehensive and functional mental healthcare system indeed exist. Unfortunately implementation thereof is woefully inadequate. This was evidenced with both Life Esidimeni as well as within the status quo. The violations of these rudimentary entitlements led to death of some 144 mental health care users and the relapse of many others. Today, atrocities continue to occur throughout the system with death and destruction in the lives of individuals so-situated becoming a raging and rampant problem throughout the country. Applied correctly extant legislation and policy could ameliorate the plight of mental health care users, and South Africa could see a high rate of recovery and successful habilitation/rehabilitation. Unfortunately this is not the case. A comprehensive legal framework is meaningless if it is not implemented correctly, or in some cases at all. Until horror stories of poor or non-existent basic services subside, until mental health care users are able to obtain what is required in order to maintain a high standard of mental well-being, the drafting of the law, policies and plans concerned will remain a moot and futile expenditure of resources and effort.
Honourable President- to many mental health care users, the Life Esidimeni tragedy instilled emotions of anger, resentment, disappointment and distrust in the Department of Health, but also in Government in its entirety for failing to protect the lives of the former Life Esidimeni patients from suffering and from death. Many mental health care users are accessing services in the public health care system and are asking themselves “does my life mean as little to Government as the lives of the former Life Esidimeni patients?” The system as it presently stands- despite all of the scrutiny under which it has been placed- represents dereliction of duty on the part of your government and the fact that nobody is being held unaccountable renders the system to a state of wanton neglect.
Honourable President, we implore you to implement the obligations to which the state is bound, address the present shortcomings productively and systemically and hold those responsible for the glaring iniquities in the system to account.
It is greatly desirous that this communication will be addressed with a sense of urgency and that steps will be put in place to remedy the fatal defects in the system.
The South African Federation for Mental Health
Project Leader: Awareness and Information
South African Federation for Mental Health
011 781 1852
072 2577 938
International Day of Disability is celebrated annually on the 3rd of December. It is the culmination of a month's worth's of activities as it falls on the last day of Disability Rights Awareness Month. This year, the South African federation for Mental health elected to have community-based care as its focus for the occasion. To this effect we have issued a press release. Read it here:
International Day of Disability takes place annually on the 3rd of December. It is an opportunity to engage in activism surrounding the rights of people with disability and to raise awareness surrounding the need for their rights to be realised. While a single day of the year is hardly enough to scratch the surface, it heralds the prospects of making a start in advocating for the rights of people so-situated. People with psychosocial and intellectual disabilities are especially vulnerable as their disabilities are often not well-understood and methods of assisting them are not clearly defined in the minds of the state or society.
An important place to begin is to hold government accountable for the execution of its mandate. The state is the primary duty-bearer when it comes to providing the care and support these individuals need both to survive and thrive. Government is responsible for creating structures that allow people with disabilities to lead dignified lives. Unfortunately however, the state has prolifically and chronically failed people with disabilities, leading to social exclusion and poverty. This was evidenced in the Life Esidimeni tragedy and a spate of deaths and assaults of and by psychiatric patients in hospitals across the country, as well as within the community, as the state did not have adequate structures in place to ensure the safety of these individuals. Stripped of even the slightest bit of dignity, such individuals languished up to a point where crises arose, but by then it was too late and state intervention was meaningless.
South Africa has a comprehensive legislative and policy framework for people with psychosocial and intellectual disabilities With the Constitution, Mental Health Care Act, Mental Health Policy Framework and Strategic Action Plan 2013-2020 and White Paper on the Rights of Persons with Disabilities, there is a clear path towards the realisation of the rights of these individuals. Unfortunately the prescripts of these instruments remain largely unimplemented, with the effect that people with psychosocial and intellectual disabilities remain in limbo, often no better off than what they were before these frameworks came into place.
Government has also failed to hold disgraced former Member of the Executive Council (MEC), Quedani Mahlangu, accountable for the deaths of the 144 people in the Life Esidimeni tragedy. These mental health care users died under her watch and no visible action has been taken against her thus far. The African National Congress (ANC) has continued to protect her, even re-electing her to their Provincial Executive Committee earlier this year. Gauteng Deputy Chairperson, Panyaza Lesufi, defended her re-election in an interview, indicating that a) the fact that Mahlangu was no longer an MEC, b) that she was no longer a member of the provincial working committee of the ANC, c) that an inquiry had been held surrounding Life Esidimeni, and d) that the ANC had acted on the recommendations of the Health Ombudsman, was an adequate series of steps taken to hold her accountable. SAFMH maintains that Mahlangu ought to be made to take responsibility for her actions and inactions by the ANC doing more than shuffling her around the ranks of the party. It is truly disheartening that, to date, this has not been the case at all.
One of the essential elements that has been highlighted in policy and legislation is the need for deinstitutionalisation. Deinstitutionalisation occurs when mental health care users are, where possible, removed from the hospital environment and sent to live in communities. Mental healthcare services are then decentralised to provide care at community level. Despite supposed commitment to this process, its execution has largely been a failure. The reality is that, in some provinces there are simply no facilities at all for people with mental disabilities to go to outside of hospitals. In Gauteng, where the Gauteng Department of Health supposedly implemented deinstitutionalisation, this resulted in 144 people losing their lives as they were transferred to non-governmental organisations (NGOs) that were not adequately equipped to care for them and left many people in a state of wanton and tragic neglect. Some of these organisations had their licenses issued to them unlawfully, and others did not receive proper subsidies. Life Esidimeni amounted to a situation worse than Marikana and on par with incidents such as the Sharpeville Massacre and the Soweto Uprising. The state was warned by professionals, civil society and families that the transfer of the patients would have disastrous results, but the warning was cast to the wind and tragedy ensued.
Whilst Life Esidimeni is a poignant example of the state’s failure to take responsibility for mental health care users, it is sadly not the only example. With inadequate infrastructure, a lack of beds, a lack of qualified health care practitioners, inadequate security, stockouts of medications, confusion as to roles and responsibilities of stakeholders such as health care professionals, emergency service technicians and the police in involuntary admissions and human rights abuses happening frequently, a number of hospitals in the country have been identified as facilities in crisis. Despite increased budgetary allocation for mental health for the 2018/2019 financial year, nothing is changing and we are not seeing a purposeful upscaling of mental health services.
Mental health care users are among South Africa’s most disenfranchised members of society and it is unfortunate that our government acts in constant dereliction of duty towards them. The time to act is now, and fast. The South African Federation for Mental health (SAFMH) calls upon the state to urgently intervene and to make full use of its resources in prioritising mental health.
Project Leader: Information and Awareness
South African Federation for Mental Health
011 781 1852
072 2577 938