SAFMH engaged with mental health care users on mental health services in South Africa in the public sector, and gathered input to get a better understanding of the experiences of mental health care users when making use of public mental health services.
The majority (86%) of mental health care users who participated in this engagement exercise indicated that they had visited the clinic or hospital once a month on average. Furthermore, 32% indicated that they had spent between R31-R40 on transport for a return trip to the clinic or hospital, and had therefore spent an average of R420 per year on transport alone to get to the clinic or hospital. Medication stockouts had a direct impact on transport expenses in that mental health care users needed to return on average 2 to 3 times to the clinic to check whether medication was available; they therefore had to spend more than double the cost for transport per month. Considering that most mental health care users were unemployed and only received a disability grant, such a seemingly small amounts for transport are in fact significant for these mental health care users. For mental health care users who rely on the small income from a disability grant, such transport expenses can make a substantial impact on their monthly budgets for living expenses.
Most of the comments made on how mental health care services should be improved revolved around accessibility of services that are inclusive of a range of interventions, additional to consultations with psychiatrists or general practitioners or the collection of medication. Mental health care users indicated that mental health services at clinic level should include mental health and general health education, counselling (that does not limit the number of sessions with a therapist), and recovery programmes that assist the mental health care users in managing their mental health condition more effectively and where the mental health care users can set goals for themselves.
Through informal discussions with mental health care users and during Empowerment Sessions conducted in Kwazulu Natal, mental health care users often indicated that psychologists should be available at clinics to fulfil the needs of mental health care users who required counselling services in addition to just receiving medication and seeing the psychiatrist or general practitioner every few months. mental health care users also indicated that occupational therapists should also be available at clinics, who could play an important role in assisting mental health care users to achieve optimal levels of functioning, with the aim to prepare mental health care users to achieve independence and recovery as far as possible.
Participants also indicated that the system at clinics and hospitals should be improved to decrease the waiting time before being attended to. During site visits to the Northern Cape in the first year of the SAMHAM implementation plan, mental health care users noted that long waiting times at clinics were often the cause of non-compliance. mental health care users from the Northern Cape said that they became despondent just thinking of having to sit at clinics for hours, or at times, for most of the day, waiting to be attended to. They then opted not to go at all. It would be interesting to know whether the long waiting time had the same impact on treatment compliance in other provinces, as was the case in the Northern Cape.
80% of mental health care users noted that they had been treated in a friendly manner by staff when visiting their local clinic or hospital, while 64% noted that they had been treated with dignity and respect. 45% noted that they had been listened to and 45% noted that they had been given the opportunity to participate in their own treatment plans. Only 4% noted that they had been treated with no dignity or respect, while 10% indicated that they had not been given the opportunity to participate in their own treatment plans.
The high ratings of mental health care users who noted a positive experience in terms of staff attitudes (treating them in a friendly manner and with dignity and respect) when visiting the clinic or hospital was encouraging to see. It was however concerning to note that less than half (45%) of the participants said that they were listened to and had been given the opportunity to participate in their own treatment plans. Treatment and management of mental health conditions should always take the views and opinions of mental health care users into consideration when it comes to decision-making related to their treatment plans, and should allow mental health care users to be active participants. Failure or reluctance to listen to mental health care users or allowing them to have a say in their own treatment plans relates to disempowerment and taking away their voices – which is essentially in contradiction with national and international human rights instruments.
The lower ratings which indicated a negative experience in terms of staff attitudes towards mental health care users were from Limpopo (10% not being given the opportunity to participate in their own treatment plan) and from Western Cape (4% not having been treated with dignity or respect). Even though it was positive to note that incidents of negative experiences by mental health care users were low, mental health care users’ rights should be non-negotiable and there should be a no tolerance policy for any form of ill-treatment by clinic and hospital staff. Furthermore, mental health care users' rights to be involved in their own lives and medical affairs should be upheld at all times.
Saturday the 7th of April is World Health Day. The World Health Organisation (WHO) has set the theme for this occasion as “Universal Health Coverage: Everyone Everywhere.” States are encouraged to commemorate this occasion through the lens of the Sustainable Development Goals (SDG’s) and examine what steps need to be taken in order to achieve them. SDG 3 deals with health, specifically to “ensure healthy lives and promote well-being for all at all ages.” This includes that of people with mental illnesses and intellectual disabilities, the former of which having recently been recognised by the WHO as one of the non-communicable diseases. The South African Legal System contains all of the components necessary to realise this target with regards to people so situated. The right to access to healthcare is espoused in the Constitution and instruments such as the National Health Act, Mental Health Care Act, Mental Health Policy Framework and Strategic Action Plan and others. Unfortunately the reality on the ground is quite different with woefully inadequate basic services available to such individuals leading to poor health, relapse, hospitalisation, poor compliance with treatment, unavailability of medication, rudimentary components of care and others. This is particularly so in the case of individuals in tertiary community-based care.
Community-based care is an important part of the deinstitutionalisation model. This model was implemented to provide for recovery and reintegration of people with mental illnesses or intellectual disabilities into their communities. It is a component of the human rights-based paradigm from which the sector operates. This is in line with international obligations as well as our own law. It is a departure from the previously-utilised medical model which had hospitalisation as a key focus. Hospitalisation should be a last resort as it is expensive and restrictive. This means that the emphasis should be on these community-based services. Sadly, this is not the case. Recovery cannot take place in the absence of support. Support should therefore be available in community-based settings. This is not the reality. Distressingly under resourced, those providing the services- mostly non-governmental organisations (NGO’s) - cannot ensure that those they serve receive the necessary support. The state, as the primary duty-bearer is obliged to subsidise and capacitate these organisations but does not do so adequately or sometimes at all. This violates the right of the mental health care users to access to healthcare.
The shortcomings of the present system of community-based care were recently thrust into the spotlight in the Life Esidimeni Tragedy in which some 144 mental health care users lost their lives with many remaining unaccounted for. These individuals were transferred from 4 institutions to ill-equipped NGO’s many of whom had obtained their licenses illegally due to government’s failure to follow due process in the implementation of their Project Marathon. A consequence of this was that mental health care users were left to die inhumane deaths through starvation, dehydration and preventable diseases. In this case deinstitutionalisation was fronted, but the exercise was merely a cost-cutting one with no regard paid to recovery and rehabilitation. In the hospitals where the mental health care users were previously kept, they were provided with shelter, food, water and medication where necessary. The hospitals had their faults but the people were cared for with a relative amount of dignity and certainly did not have their lives placed at risk. Provision should have been made for support to “follow” them out of the hospital and into the community and to organisations where their needs could be provided for. Instead they were cast out into cruel and brutal conditions and treated in a manner amounting to torture. Far from a mere violation of their right to health, this chain of events in fact extinguished this right as well as a host of others.
In a knee-jerk reaction to Life Esidimeni, government has Gazetted Policy Guidelines for the Licensing of Residential and/or Daycare Facilities for Persons with Mental Illness and/or Severe or Profound Intellectual Disabilities. These provide for comprehensive and stringent criteria with which an NGO must comply in order to be able to obtain a license to operate a care centre. While laudable, these criteria are simply too onerous for most NGO’s to comply with, with the effect that once these Guidelines come into force many of these organisations will not be able to obtain licenses. This will mean that they will not receive government subsidies and will likely either have to compromise standards of care or shut their doors. This too will violate the right to health of mental health care users as it will take away existing services. This is plainly regressive and unconstitutional.
The South African Federation for Mental Health (SAFMH) is a non-profit organisation seeking to protect and uphold the rights of people with psychosocial disabilities and people with intellectual disabilities. We call upon the state and other stakeholders- to come together and ensure that “Universal Health Coverage: Everyone Everywhere” is achieved in South Africa. Individuals with psychosocial disabilities or intellectual disabilities are among societies most vulnerable and what is required is for issues surrounding individuals so-situated to be prioritised on an ongoing basis- not simply when a crisis arises. Good health enables people to live happy and fulfilling lives- something of which such individuals are fully capable. Do not let community-based care remain shrouded in darkness- appreciate its importance and #takeyourplace
For Inquiries contact:
SAFMH Project Leader: Information and Awareness
011 781 1852- Extension 201
Aaron Motsoaledi, Minister for Health, has officially gazetted Policy Guidelines for the Licensing of Residential and/or Daycare Facilities for Persons with Mental Illness and/or Severe or Profound Intellectual Disabilities. These Guidelines set out requirements for a non-governmental organisation (NGO) to obtain a license to operate a facility caring for people with psychosocial disabilities and people with intellectual disabilities. The Guidelines will be enacted in the wake of the Life Esidimeni tragedy where 144 people lost their lives and where a large number of people remain unaccounted for. The predominating factor catalysing what has been hailed as one of the worst human rights violations in South Africa’s recent history was that the majority of NGO’s to which mental health care users were transferred from Life Esidimeni were either unlicensed or had improperly obtained their licenses. Lack of adequate facilities led to people dying of preventable diseases, starving to death or dying from dehydration. While this may well be hailed as “too little, too late,” there is a growing body of evidence which illustrates the marginalisation and dehumanisation of mental health care users across the country. In light of this, and in light of the fact that there is no way of knowing what will happen to people so-situated in the future, these Guidelines bare careful analysis.
An aspect that is welcomed by the South African Federation for Mental Health (SAFMH) is that the Guidelines are extremely comprehensive and detailed, setting out precisely what needs to be in place for an NGO to qualify for a licence. There is, however, a downside to this in that the requirements are so strict and onerous that the vast majority of NGO’s will not be able to comply with them without considerable additional funding and subsidies. Since no promise is made of this, it is likely that many will have to close their doors, which will be of imminent detriment to mental health care users. It would appear that the state is so preoccupied with safeguarding themselves against future liability that they have not fully taken into account the situation on the ground. The Guidelines can thus be seen as a knee-jerk reaction rather than a clearly thought-out process. It would seem that in compiling these Guidelines, a healthy space for constructive dialogue, where NGO’s can express freely what they need, has not happened to the extent it should have, which has the effect that the Guidelines are somewhat unrealistic in nature.
A major aspect, and one related to the above, that we question is that the Guidelines do not make provision for capacitating NGO’s to comply with the requirements for registration. As articulated, many NGO’s simply do not have the resources to improve their premises to suit the required standards with the effect that they cannot become licensed. Often, there is also a lack of knowledge of national, provincial and municipal law, which can also lead to non-compliance. Given the shortage of supply in these services in relation to the demand, it is submitted that capacity building is vital to ensure that there are enough facilities available. Had government focussed on development rather than simply on process, a chance would have existed that the sector could have been furthered rather than hindered. It is submitted that government could have solved this problem by building in a segment where they made a statement of intent to aid NGO’s in meeting the requirements for obtaining a license.
The service users referred to in the Guidelines provide only for people with mental illnesses and people with severe or profound intellectual disabilities. It therefore does not include people with mild and moderate intellectual disabilities. It is submitted that this is an oversight because such individuals can also require a substantial amount of support and can also become vulnerable to abuse, neglect and exploitation. Because facilities providing for and protecting people so-situated are not included in the Guidelines, this could lead to them operating unlicensed; something which could very quickly become disastrous.
In disability rights, a medical model was previous used. The person was considered a patient and maximal level of integration back into society was not a real consideration. This appears to be the approach adopted by the Guidelines, which refer to discharge reports whereas community-based services are run by NGOs and according to a recovery-model approach. Service users are therefore never admitted (as they would be in a clinical setting) and thus are not formally discharged. Community-based service is based on the equality between staff and services users and not on a professional and patient basis. The multi-disciplinary approach and team set forth in the Guidelines is therefore embedded in the medical model and does not embrace the essence of community-based services at grassroots level. Where daily medical care is not indicated, it should not be a requirement, yet it is in the Guidelines. It is therefore suggested that in drafting these Guidelines, government lacked an understanding of how these services are intended to function.
It is also important to acknowledge the limitations of the Guidelines. They cannot, for instance, altogether curb the existence of unlicensed NGO’s. This is because such facilities can become self-supporting by, for example, charging fees. The shortage in supply of these residential and / or day care services means that many families and caregivers of the targeted groups may simply have no option as to where to send them and may settle for an unlicensed facility, regardless of the fact that it may be deficient in terms of the requirements of the Guidelines. It is submitted therefore, that government was remiss in not including consequences for operating without a license.
The South African Federation for Mental Health (SAFMH) is a non-profit organisation seeking to protect and uphold the rights of people with psychosocial disabilities and people with intellectual disabilities. We call upon all stakeholders- including government- to come together and derive a way in which these Guidelines can come to be a viable yardstick for how facilities operate.
Government has long-since required licenses from NGO’s in order for them to obtain subsidies. This is a necessity when signing service level agreements with the state. This imperative is thus not new. While the Guidelines have certain troubling issues, they are the best we have and it is time to take up the cudgels and make the best of the situation. Nothing can undo the monumental tragedy that was Life Esidimeni, but the state has made the effort to ward of this kind of human rights violation in the future. It bears criticism, but it also bears hope, and it is our hope that the Guidelines will serve to catalyse at least some kind of positive change in the future.
Project leader: Awareness and Information
Tel: 011 781 1852- ext 201
The 30th of March is World Bipolar Awareness Day. As with any commemorative occasion, it represents the opportunity to reflect on the past, to examine the status quo and also to make a determination as to what needs to be done in the future. People with Bipolar Disorder- as with all mental illnesses and psychosocial disabilities- have found themselves chronically discriminated against with tarnished perceptions imposing limitations on all facets of life. Indeed, prevailing social stigma remains rife among the public at large, which significantly diminishes the chance of a person so-situated from living as a productive member of society.
According to the World Health Organisation (WHO), Bipolar Disorder is a prevalent condition, with figures indicating it affects between 40 and 60 million people worldwide. Much research has been done surrounding the disorder and the combination of medication and therapy has shown good outcomes for affected persons. Notwithstanding this, Bipolar Disorder can become severe- even disabling- and there are many challenges individuals so-situated face- with the resultant unjustifiable limitation of their right to employment.
South Africa has ratified the International Covenant on Economic, Social and Cultural Rights. The right to work is espoused in this treaty. Importantly, this instrument details that this right extends to everyone, meaning that people with illnesses and disabilities are included in this catchment. In the event that an individual’s Bipolar Disorder constitutes a disability, the Convention on the Rights of People with Disabilities also becomes relevant. This treaty has also been ratified by South Africa and highlights the need to mainstream people with disabilities into all spheres of society. The Constitution of the Republic of South Africa provides for the rights to dignity and equality- all of which are required for the realisation of the right to employment.
The mere fact that a person suffers from an illness or disability, therefore, does not mean that they ought to by necessary implication be unemployed or considered unemployable. That this is the case in the Republic is contained in the Basic Conditions of Employment Act which 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. This excludes instances where the accommodation would lead to unjustifiable hardship or restrictions upon the employer. Under these conditions, it is wholly possible that an individual- such as one with Bipolar Disorder- can flourish in a work environment. Stigma attaches the intrinsic notion that these individuals are guaranteed to be unstable and unable to successfully fulfil the tasks attached to their job description without the requisite evidence to substantiate this. Challenges need not be barriers if only there is empathy.
Reasonable accommodation can take many forms and its requirements differ from person to person. These may include incremental increases in workload when a person returns from sick leave; flexible working hours; the breaking up of tasks; ensuring a working environment is quiet; reassignment to an alternative position; changes to supervisory methods; time off for medical treatment and collection of medication and many others. These 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.
The South African Federation for Mental Health (SAFMH) is a non-governmental organisation seeking to advocate for and uphold the rights of people with psychosocial disabilities and people with intellectual disabilities. This year, the organisation will be raising awareness about the right of such individuals to employment. On this World Bipolar Awareness Day, SAFMH calls upon employers, prospective employers and other stakeholders to ensure that the right of people with Bipolar Disorder to work is upheld and that proactive steps are taken to facilitate the realisation of this right. Government departments and other stakeholders are encouraged to educate both employers as well as current and future employees with Bipolar Disorder on the right to work and to reasonable accommodation in the workplace.
Bipolar Disorder is a diagnosis, but it need not be a sentence. There is no reason why capable members of society should be precluded from entering and remaining in the labour market. Should employers be willing to take the necessary steps where required, employees with this disorder can add immense value to an organisation. Let the awareness raised by this day be carried over to every day of the year and let people with this condition be empowered and capable of transcending stigma and negative perceptions. #takeyourplace
For Inquiries Contact:
Project Leader: Information and Awareness
Tel: 011 781 1852
South African Human Rights Day is celebrated every year on the 21st of March. A symbol of our troubled history, this commemoration addresses inherent and deeply-rooted discrimination against people who have been oppressed for centuries. While the advent of Constitutional Democracy has seen changes in law and policy intended to emancipate those who have been marginalised, social stigma looms large in the lives of many residing in the Republic today. Pervasive and pernicious, this societal phenomenon is dehumanising and diminishes one’s quality of life. While there exists a firm commitment to achieving substantive equality, efforts in practice to truly achieve this in the lives of the most vulnerable have been disparate and much remains to be done in order for this to be realised. Pertinent examples of groups remaining in peril are people with psychosocial disabilities and people with intellectual disabilities. A rudimentary example of this is that the right to work of people so-situated is largely curtailed or simply extinguished. This violates their rights to inherent dignity and that they are equal before the law. This is patently unconstitutional and contrary to the prescripts of international law.
The right to work is espoused in detail in the International Covenant of Social, Cultural and Economic Rights. It states that every person has the right to gain a living through work they choose and accept. It also details that states must make opportunities available for people to gain skill sets in order for them to become employable. It is important to understand that this right extends to everyone and is not exclusive to those without a disability. A legal instrument which augments the notion of equality within the workplace is the International Convention on the Rights of Persons with Disabilities, which has as part of its focus the mainstreaming of people with disabilities into all societal environments. Nationally, and in addition to the aforesaid Constitutional entitlements, a protective shield is created for people with psychosocial disabilities and people with intellectual disabilities by legislation such as the Labour Relations Act, the Basic Conditions of Employment Act, the Employment Equity Act, the Promotion of Equality and Prevention of Unfair Discrimination Act and others. Despite this; and as indicated; implementation on the ground is poor, resulting in people so-situated suffering the effects of unemployment and unfair labour practices.
According to the 16th Commission for Employment Equity, only 1.2% of the workforce are people with disabilities in comparison with the target of 2%. This figure is unacceptably low and represents a failure on the part of duty-bearers to respect, protect and fulfil the rights of people with disabilities in the workplace. People with psychosocial disabilities and intellectual disabilities constitute a significant portion of this demographic and suffer under the hand of flagrant present-day disadvantage despite our legal framework.
People with psychosocial disabilities and people with intellectual disabilities have long-since been considered incapable and capricious. This is highly prevalent among potential employers who are of the view that they will have to make unreasonable allowances for such individuals when, in fact, the law prescribes purely their reasonable accommodation. Stigma against people so-situated is entrenched in others from a young age and it carries over to all decisions made about them, including whether they have the capacity to become part of the workforce. This is despite a growing body of empirical evidence that such individuals can excel in a conducive environment and become dependable workers. In addition to the effects of stigma, work-readiness is a significant challenge for people with psychosocial disabilities and people with intellectual disabilities, with woefully inadequate availability of opportunities available for higher education and training accommodating the needs of such individuals. This is in spite of the fact that it has been shown that people with psychosocial disabilities and people with mental illness and intellectual disabilities can very successfully cultivate new skills when education is provided.
The South African Federation for Mental Health (SAFMH) is a non-governmental organisation seeking to advocate for and uphold the rights of people with psychosocial disabilities and people with intellectual disabilities. This year, the organisation will be raising awareness about the right of such individuals to employment. On this Human Rights Day, SAFMH calls upon employers, prospective employers and other stakeholders to ensure that the right of people with psychosocial disabilities and people with intellectual disabilities to work is upheld and that proactive steps are taken to facilitate the realisation of this right. Government departments and other stakeholders are encouraged to educate people who, themselves, have psychosocial disabilities and intellectual disabilities, as well as their families and caretakers, surrounding their right to employment
Human Rights Day is not only an opportunity to reflect on the past, but also a chance to examine the status quo and how it can be changed for the better. People with psychosocial disabilities and people with intellectual disabilities are wholly deserving of opportunities to realise their right to work and the accompanying rights to dignity and equality through entering into the workforce- and should not be denied this right on account of stigma and discrimination. #takeyourplace
For Enquiries Contact:
Project Leader: Information and Awareness
Tel: 011 781 1852
The 21st of March is World Down Syndrome Day. The rights of people with Down syndrome have long since been violated. Due to their intellectual disability, such individuals are seen as “second class citizens” without agency or autonomy. Underestimated and chronically disadvantaged, people with Down syndrome remain socially excluded and unable to uplift themselves. Their capacity to contribute to society is thought to be negligible and they are viewed as unable to become educated, unable to live independently and to enter into the labour market. The latter of the three is particularly concerning as it is through the right to work that entitlements such as the rights to dignity and equality can be realised.
According to Down Syndrome SA, most people with Down syndrome fall into the mild to moderate category of intellectual disability, meaning that despite the challenges they may face, they are still perfectly capable of functioning in a myriad of different work environments. This organisation also cites employment as a component greatly beneficial to the outcomes of such individuals. It is for these reasons that barriers to the right to work constitute such an extreme limitation of their fundamental and rudimentary human rights.
A hallmark of the right to dignity is a sense of self-esteem. Realisation of the right to work provides an individual with this because it creates a sense of empowerment. The social stigma surrounding Down syndrome pervades into the mind of potential employers, automatically disqualifying people so-situated from entering into the labour market at all. Thus, many people with Down syndrome simply have never had a job, resulting in low self-esteem and unhappiness, which can lead to further adverse outcomes such as depression. People with Down syndrome often find themselves caught in poverty traps. Unable to get work, there is no means of transcending these. This has a negative impact on their families and caregivers with the effect that relationships deteriorate and such individuals become isolated; their sense of esteem further diminished.
The right to be equal before the law is characterised by the absence of discrimination. The Constitution of the Republic of South Africa lists grounds upon which discrimination is expressly and strictly prohibited. One of these grounds is disability. This is inclusive of environments such as the workplace. According to South African Labour Law- specifically the Employment Equity Act, Labour Relations Act and Basic Conditions of Employment Act- in employing someone and retaining them in their employ, an employer may not unduly prejudice a person on the basis that they have a disability, provided they meet the inherent requirements of the job and provided that any accommodation provided to them is reasonable in nature. This is not merely an ideal to which employers must aspire, it is a legal imperative with which they must comply.
A difficulty precluding people with Down syndrome from obtaining gainful employment is a woeful lack of education and training. Absence of requisite qualifications can automatically disqualify such individuals from securing employment. Education too is intrinsically linked to the rights to dignity and equality as enshrined the Constitution. People with Down syndrome have the capacity to develop considerable skills when educated in the right environment and this can stand them in good stead in securing employment. Should this not be provided, however, such individuals cannot become work-ready and cannot be expected to successfully function in the work environment.
The South African Federation for Mental Health (SAFMH) is a non-governmental organisation seeking to advocate for and uphold the rights of people with psychosocial disabilities and people with intellectual disabilities. This year, the organisation will be raising awareness about the right of such individuals to employment. On this World Down’s Syndrome Day, SAFMH calls upon employers, prospective employers and other stakeholders to ensure that the right of people with Down syndrome to work is upheld and that proactive steps are taken to facilitate the realisation of this right. Mental Health Societies, Government Departments and other stakeholders are encouraged to educate people who, themselves, have this disability, as well as their families and caretakers, surrounding their right to employment.
People with Down syndrome have been chronically marginalised throughout the years. Constitutional Democracy exists to dispel this practice and ensure that the rights of such individuals come to fruition. Commemorative occasions such as World Down Syndrome play an important role in advocating for the rights of people so situated but one day isn’t enough to make the necessary systemic changes such individuals require. It is, however, a starting point for catalysing change and its importance, therefore, cannot be overestimated. #takeyourplace
Project Leader: Information and Awareness
011 781 1852