As South Africa took time to celebrate its annual human rights day on March 21, this year (2017) the deaths of the 94 patients in Gauteng Province in a space of under a year should not be forgotten. The provincial government of Gauteng took the decision to remove persons with psychosocial and intellectual disabilities from government health institutions to reduce spending on their healthcare. The implementation process was poorly planned, rapidly executed and chaotic.  The move had fatal and disastrous consequences as it not only contravened national and international law, but also proved cruel and inhumane. The record shows 94 lives were lost, families have been severely traumatised and a healthcare support system regardless of whether it was the most ideal or not was shaken to its knees.

Apart from violating domestic law – the National Health Act 61 (2003) and the Mental Health Care Act 17 (2002)) – as a State party to the UN Convention on the Rights of Persons with Disabilities (CRPD) and the International Covenant on Economic, Social and Cultural Rights (ICESCR), among other international instruments, there are several frameworks that were contravened by South Africa. This case provides an opportunity for some serious learning for South Africa (SA) as well as other African States. Learning from previous mistakes is vital for progress. Focus should be directed on how to avoid making similar mistakes in the future. It is probably more important to provide guidance to State parties or governments when they have made mistakes as opposed to the naming and shaming – particularly after the fact. To be productive, however requires the state or those in power to accept responsibility, acknowledge their mistakes and be receptive to the guidance. Ultimately, objectively and substantively unpacking the critical aspects or points at which things went wrong in the Gauteng saga from an international human rights perspective would be beneficial for the planning and implementation of these types of projects or programmes in the future.

 The human rights violations under the CRPD

 Given that characteristics of disabilities include long term mental, intellectual or sensory impairments the 94 people who died in Gauteng (as are all other persons with psychosocial and intellectual disabilities in South Africa and globally) fall within the scope of CRPD. Currently the CRPD is the most comprehensive international treaty in the area of disability and as such provides far more protections than any other singular international human rights instrument.

The CRPD sets out key rights that people with disabilities should enjoy in a fair society. It articulates human rights in a way that speaks specifically to this disproportionately marginalised group. In a nutshell, the CRPD applies a disability lens to all the human rights and fundamental freedoms applicable to all human beings and so it arguably does not present a new set of rights for persons with disabilities given that most of the rights therein are already protected under some other international and regional human rights treaties. It simply encapsulates a collection of key human rights pertaining to persons with disabilities and describes the specific elements that states parties are required to take into account in the protection of these rights. This explains the predominant focus on the CRPD taken in this article over other international treaties.

The Centre for Human Rights at the University of Pretoria, one of the most respected human rights institutions in both South Africa and the continent provides an ample starting point on rights violations under the CRPD. The Centre expressed shock in its Press Statement on this issue and highlighted the primary rights violations as articles: 10 (right to life); 15 (freedom from torture or cruel, inhumane or degrading treatment); 19 (right to independent living and inclusion in society); 25 (right to highest attainable health); 28 (adequate standards of living including adequate food, clothing and housing).

The purpose of this post is not to regurgitate these rights violations but rather to explore how things went wrong and how they could have been done differently.

What really went wrong in South Africa’s Gauteng Province from a CRPD perspective?

 Gauteng, home of South Africa’s administrative capital Tshwane (formerly Pretoria) and the country’s largest city Johannesburg undertook to deinstitutionalise mental health care. At the onset it is important to highlight that the concept of deinstitutionalisation in general is a critical and fundamental human rights issue for persons with disabilities particularly those with intellectual and psychosocial disabilities. It impacts the rights enshrined in the CRPD predominantly the rights to: autonomy (article 12); liberty and security of the person (article 14); freedom from torture or cruel, inhuman or degrading treatment or punishment (article 15); and the right to live in the community (article 19). Hence, deinstitutionalisation is a welcome and commendable initiative, because segregation of persons with disabilities in large institutions is an obvious and direct violation of the CRPD. However, the province’s reasons for doing so (i.e. saving cost) were not at all human rights based.

Furthermore, the benefits and value of deinstitutionalisation (particularly since the adoption of the CRPD in 2006) have been widely documented globally. The CRPD Committee (the UN committee responsible for monitoring the implementation of the CRPD) in its concluding observations to some African states has raised concerns regarding continued cases of institutionalisation. These concerns include the prevalence of institutionalisation of persons with disabilities in the State parties and the absence of community support services that provide for inclusion of persons with disability in society.  The Committee is also concerned about the marginalization of persons with disabilities, in particular persons with psychosocial and/or intellectual disabilities, from everyday life due to lack of provision of essential services. Violations associated with institutionalisation reported in some African states parties include physical restraint and isolation which are recognized globally as cruel, inhuman or degrading treatment, as well as the use of corporal punishment. In some cases some of the persons with disabilities are abandoned by their families in these institutions.

The CRPD Committee has called on African State parties to repeal legislative provisions which allow for the deprivation of liberty on the basis of disability, including psychosocial or intellectual disability.  It further recommends that State parties adopt necessary measures to prevent isolation or segregation of persons with disabilities from the community by being hidden in the family or in segregated institutions. Focus should be directed at the development of strategies for the deinstitutionalisation of persons with disabilities, within stipulated time frames and with measurable indicators. Such strategies should include comprehensive community-based services including personal assistance services.  Importantly the development and implementation of these strategies must be done in close cooperation with persons with disabilities and their representative organizations.  A far cry from the Gauteng experience which sparked protest marches and court interdicts. These protests are a consequence of a process that lacked proper and meaningful consultation and dialogue with affected communities.  A comprehensive, well thought-out strategy with realistic timeframes and human rights based indicators would have ensured that the community based services and other supporting services required for successful deinstitutionalisation were adequately available.  Community based support, social networks and naturally occurring community support impact and support the long-term sustainability and ultimately success of the deinstitutionalisation process.

From the findings of South Africa’s Health Ombud who probed the circumstances surrounding the deaths, it is clear the project was without a plan or clear objectives, and that the implementation was rushed, and chaotic. Indeed, this contributed to the resultant egregious rights violations. The mistakes that could have and should have been avoided can be observed at two critical levels of Gauteng’s project: 1) Project conceptualisation and planning; and 2) Project implementation and monitoring

1. Project conceptualisation and planning

As already highlighted above, the objective of the project was primarily for the purposes of cutting costs. As a single motivation for deinstitutionalisation, this objective on its own disregards South Africa’s obligations under the CRPD as well as the International Covenant on Economic, Social and Cultural Rights (ICESCR). It is true that the adequate functioning of the health care system depends on good budgeting, rational expenditure, planning, oversight and accountability on the part of the state and progressive realization of economic and social rights will take time and is at times dependent on the resources available to a government. However, progressive realisation of rights such as in this case, the right to healthcare does not mean that a government can deliberately take retrogressive measures that diminish enjoyment of people’s rights.   Put simply governments generally should not cut budgets affecting economic, social and cultural rights unless it introduces compensatory measures or efficiencies in spending that counter any negative impact from cuts.

Given that Gauteng’s motive or objective in this case was cost-cutting the SA Government as duty holder should have been in a position to explain the factors informing the chosen route and its impact on rights realisation as well as demonstrate that it was using the maximum available resources to continue improving the conditions of its people.  A scan through the Health Ombud’s report shows that there was never any deliberation nor initiative to demonstrate this on the part of the provincial authorities and in the end the process appears to have been disconnected from the national government.

In view of the fact that progressive domestic law or legislation is highly desirable and in some cases may even be indispensable to the realisation of human rights, South Africa does not fare badly in this arena. The country’s Mental Health Care Act provides that:

‘the person, human dignity and privacy of every mental health care user must be respected and that every mental health care user must be provided with care, treatment and rehabilitation services that improve the mental capacity of the user to develop to full potential and to facilitate his or her integration into community life.’

It is therefore quite astounding that Gauteng’s provincial government seemed quite oblivious to this. Gauteng should have taken into account the needs of the mental health care users first and reached out to different sectors of the impacted communities. It could have created partnerships that focus on a human rights based processes and ultimately collectively addressed what might have been identified as a pressing communal issue. The mistake of Gauteng then lies in having identified a problem alone without the involvement of the affected communities. Had the problem identified emanated from and resonated with the impacted communities it would have been easily accepted as a common cause for concern and thereby justifying the course of deinstitutionalisation that it took.

Another mistake lies in the fact that the project planning process was, according to the Health Ombud’s report largely limited to government officials. Communities and civil society organisations were not involved in any credible manner and many stakeholders reported having not seen the project plan at all. SA’s National Health Act (2003) emphasises community participation and provides for full community involvement through various structures, yet the Health Ombud’s report states that the planning documents made no reference to any of the structures provided for in the Act.

Reaching out to as many organisations and key players within and outside of the obvious stakeholders is absolutely necessary of which Gauteng should have included: people with psychosocial and intellectual disabilities and the organisations representing them and their families; all the 27 NGOs involved in the project together with Life Healthcare Esidimeni – the institution from which patients were being removed, relevant health and community service providers, businesses, policy makers, media and others. Some of these players such as the media have significant influence in the communities even though they might seem far from or unconnected to the problem or challenges. Ultimately the idea is to engage stakeholders who are most likely to be affected by the action.

As a final part of the planning process Gauteng should have established or created a distinct project implementation or coordination structure. Given the ensuing chaos in the implementation process it is evident that the coordination mechanism was lacklustre. Such a structure would have assisted in bringing together multiple and practical inter-sectoral allies and stakeholders in a useful and effective manner. It would have ensured the effective execution of a number of Gauteng’s basic but key functional responsibilities such as among others:

• Providing formal strategic direction;
• Facilitating dialogue between partners;
• Coordinating community outreach in the new communities where patients were to be relocated to; and
• Handling internal and external communication to ensure all stakeholders are well informed about the project.

2. Programme implementation and monitoring

Deinstitutionalisation of the kind that Gauteng unleashed is definitely a highly complex issue on numerous levels and is therefore not one to be implemented hurriedly. Institutionalisation of persons with psychosocial and/or intellectual disabilities is a centuries old phenomenon that requires significant and sufficient allocation of time for implementation if positive change is to be realised. Deconstruction of such a phenomenon will require change not only at the policy, legal and legislative levels but also of the attitudes of the communities, families and individuals. As such States thinking of or already embarking on this kind of exercise must brace themselves and be prepared to make a commitment that goes well beyond the short term. Ideally, the project ought to be structured strategically from as high as the national policy level rather than as an offshoot at the provincial level if it is to be sustainable. Although the ultimate responsibility here lies with the State, it is my view that governments should consider partnering with key international cooperation allies, local businesses, donors among others, to bolster their resource base at the financial, social and technical levels. The Health Ombud’s report suggests that this kind of support was available to Gauteng but the provincial leadership did not do very well in utilizing the support of experts and organisations in the field. Heeding the advice of professionals would have helped save lives and would have immensely supported a viable implementation route of the project.

Given the porous nature of the Gauteng project conception and implementation, talking about impact and monitoring would seem a redundant issue but not highlighting their importance here would be dire. A human rights-based approach to implementation impresses on the need to assess impact and this can be done by deciding in advance how the project is going to define success. The Gauteng project conceptualisation and planning was significantly flawed from a human rights based perspective, but the sheer necessity and imperative of setting appropriate milestones and benchmarks are also highlighted in this case. Appropriate milestones and benchmarks along the way would have provided an indication of progress in a verifiable manner. If planning had been human rights-based, the project would have included both process and outcome indicators and intervals at which they would have been evaluated.

However, this is all water under the bridge; sadly lives were lost but this need not ever happen anywhere again in the future if States honour their human rights obligations.