Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?

Background Intellectual disability (ID) is the most prevalent disability in the world. People with intellectual disability (PWID) frequently experience extreme violations of numerous human rights. Despite greater prevalence in South Africa than in high-income countries, most ID research currently comes from the Global North. This leaves us with few contextually sensitive studies to draw from to advance inclusive citizenship. Objectives Our scoping review aims to investigate pertinent ID rights issues in South Africa, synthesise quantitative and qualitative studies, and provide a synopsis of available evidence on which to base future work. We aim to clarify key concepts, address gaps in the literature and identify opportunities for further research. Method We followed strict eligibility criteria. Medical subject heading terms were entered into seven databases. Seven reviewers worked independently, two per paper. Quantitative and qualitative data extraction forms were designed. We followed Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol. An inductive approach enabled a thematic analysis of selected studies. Results By following PRISMA guidelines, 82 studies were assessed for eligibility of which 59 were included. Ten sub-themes were integrated into four main themes: the right not to be discriminated against, the right to psychological and bodily integrity, the right to accommodating services and challenges to rights implementation. Conclusion People with intellectual disability face compound difficulties when trying to assert their constitutionally entitled rights. This ongoing project requires serious commitment and action. Statutory obligations to nurture every South African’s human rights naturally extend to PWID and their supporters who forge ahead in a disabling environment.

By synthesising the medical and social models, the WHO (2002) offers an integrative bio-psycho-social model of disability. The International Classification of Functioning, Disability and Health (ICF) frames biological, individual and social aspects of health as inseparable. Disability as a consequence of disease or socio-political ignorance shifts to a site of interacting health, environmental and personal factors (Mji et al. 2017). At any given time and in any combination, these factors can facilitate or hamper a person's functioning (Selb 2017).
Finally, if we appreciate disability as fluid and situational, we are no longer polarised or opposed as enabled or disabled, but occupy different spaces on the continuum of 'changing states of impairment and health' (Swartz et al. 2012:1). By drawing on one another's experience of disability and ablebodiedness, it becomes possible for us to shift and meet along this continuum and reach a 'richer understanding' of living with ID (Swartz et al. 2012:8).
The issue of societal inclusion and exclusion of PWID on psycho-medical, socio-political or accessibility grounds touches on core questions of rights claims, justice, citizenship, equality, resources and protections. People with intellectual disability may have limitations in advocating for themselves and ensuring that their best interests are prioritised. Not affording PWID support or opportunity to contribute to policies that directly impact their lives can be viewed as morally abusive (Kittay 2009:620). Disenfranchising PWID maintains vulnerability to exploitation, marginalisation and inequality in systems where the distribution of care and services hardly occurs in their favour and very seldom adequately (Adnams 2010). Without appropriate supportive decision-making or opportunity to assert access to recourse with assistance, PWID are subjugated to whatever form care may take and at risk of abuse and neglect (Makgoba 2016).
Driven by misconception, fear and lack of knowledge, discrimination against PWID can result in isolation, segregation, stigma and death (Byrne 2017;Flores 2017;Lindau et al. 2017;Maclean et al. 2017;Makgoba 2016;Thornicroft et al. 2007;Wissink et al. 2017). Only 2 out of every 100 children with disabilities receive schooling in developing countries (Cramm et al. 2013;Du Plessis 2013). Compared to the general population and other disability groups, PWID are more often unemployed or underemployed because of low expectations of competence ('they' can't do much) and high expectations of problems ('they' are difficult to work with) (Carvalho-Freitas & Stathi 2017; Merrells, Buchanana & Waters 2017;WHO 2011;Wilson et al. 2017).  http://www.ajod.org Open Access

A South African setting
South Africa exceeds ID prevalence in high-income countries (Maulik et al. 2011;McKenzie 2016;Tomlinson et al. 2014).
To this point, foetal alcohol spectrum disorder (FASD) is an easily preventable cause of ID, but South Africa's prevalence rate of 6% -9% is one of the world's highest (Adnams 2010;De Vries et al. 2013;Roozen et al. 2016;Urban et al. 2008).
Accurate South African data on ID prevalence among 2-9-year-old children were last gathered in the 1990s (Christianson et al. 2002;Kromberg et al. 1997Kromberg et al. , 2008. During the 2011 national census, ID was not directly measured, and statistics on children with disabilities aged 0-4 years were not profiled ( Because of shortage of educational programmes for children with intellectual disability (CWID), parents in countries like South Africa easily become unpaid caregivers because care burdens and lack of support hinder their pursuit of employment (Geiger 2012;Mckenzie & McConkey 2016).
Being out of school also limits exposure of CWID to formal teaching on sexual health programmes (Rohleder & Swartz 2009;WHO 2011). This is problematic, because more than two-thirds of adolescents with ID are at risk of sexual abuse before they turn 18, whereas up to 83% of women and 32% of men with ID are at increased risk of being sexually assaulted in their lifetime (Byrne 2017;Peckham 2007).
Other frequently violated rights of PWID in South Africa pertain to physical abuse, exclusion, barriers to accessing medical and mental health services, involuntary confinement, denial of marriage or parenting, financial exploitation, unemployment, occupational restrictions and living safely outside of institutions (Drew et al. 2011;Erasmus, Bornman & Dada 2016). These rights are violated in public, family 1.The estimated South African population is 55 908 865 (World Bank 2017), implying that more than 2 000 000 individuals may be living with difficulties 'in remembering or concentrating'.
homes, places of education and work, care centres, health care settings, police stations, courts and civic offices (Drew et al. 2011).
As yet, we know little about South African evidence-based studies on which to build better ID rights practice. Most ID research comes from high-income countries where PWID enjoy various government and community supports but is not always applicable to settings in which most PWID live (Glicksman et al. 2017;Groce et al. 2011aGroce et al. , 2011bMcKenzie, McConkey & Adnams 2013a;Robertson et al. 2012). For this reason, we aim to investigate pertinent South African ID rights issues, clarify key concepts, synthesise quantitative and qualitative studies and provide a synopsis of existing evidence (Arksey & O'Malley 2005;Daudt, Van Mossel & Scott 2013;Harden 2010;Peters et al. 2015).

Aim
The primary aim of our scoping review was to collect all literature published in peer-reviewed journals on ID rights in South Africa over the past 25 years . We set out to study the ID advocacy, awareness and rights promotion research; describe outcomes of studies on realising human rights entitlements; and identify publications that address claims to citizenship of South African PWID. Following Peters et al.'s (2015) suggestions for scoping reviews, our objectives were guided by questions specific to this study: • What do we know about the state of human rights of PWID in South Africa? • Are there barriers jeopardising rights realisation? • Are PWID participating in socio-political lives of communities? • Is rights advocacy needed?
• Which studies can we use to address these questions?
We also aim to identify areas for future investigation by highlighting gaps in the available research.

Method
We followed the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol with PROSPERO (CRD42016036100). An inductive approach accommodated thematic analyses of selected studies.

Eligibility
Included studies are on rights of PWID in South Africa published between 1992 and 2017. Research sites and participants are in South Africa. Comparative country studies on ID had to include South Africa (World Bank 2017). Eligibility criteria for inclusion in this review are summarised in Table 1.
Reviewer panel consensus minimised study selection bias by resolving issues like the eligibility of studies on FASD and autism spectrum disorder (ASD). Intellectual disability is not required for an FASD diagnosis, and low or average intellect is actually more common in FASD (Royal College of Psychiatrists [RCP] 2001). Studies with participants with FASD and low or average intellect were thus excluded from this review (RCP 2001).
Although developmental disorders and ID coexist and share associations, ASD may not have caused ID and not all individuals with ASD have ID (RCP 2001). Conversely, studies that included, for example, people with Down syndrome (DS) and phenotypical ID were eligible for review (RCP 2001).

Information sources
We searched seven databases (Web of Science, PubMed, Scopus, ERIC, Africa-Wide Information/NiPAD, African Journal Archive and African Index Medicus) to increase the likelihood of locating South African publications among international studies. Electronically unavailable records were hand searched, authors were contacted or subject librarians at Stellenbosch University were approached. Backward and forward citation searches identified additional studies. The last search ran on 31 August 2017 which was also the author contact cut-off date.

Search strategy
Data were sought for outcome, setting and participants by using medical subject headings (MeSH) terms (Box 1) as per systematic scoping review practice. 2 Searches were sensitised for time span  and English as publication language. English is a compulsory subject in South African schools and the language of business and government. It is also the preferred instruction medium in most tertiary institutions from which ID practitioners and researchers graduate (Dictionary Unit for South African English 2016; Donohue, Bornman & Granlund 2015).

2.MeSH (Medical Subject Headings) is the National Library of Medicine (NLM)
controlled vocabulary thesaurus used for indexing articles. It facilitates replicability and consists of sets of terms naming descriptors in a hierarchical structure. Articles are associated with a set of MeSH terms that describe the content of the article.

Study selection
In an attempt to minimise risk of bias across studies that may affect the overall review results, seven reviewers worked independently, two per paper, to assess each study according to the review's eligibility criteria (C.C., O.C., J.M., L.A., M.S., S.M., A.H.). Three experts were available for data verification (P.S., C.A., L.S.). Future systematic reviewers can critically appraise individual bias within studies by means of checklists suitable to study design and available in the public domain as offered in Table 2. Individual studies can be assessed for evidence of bias reduction by purposeful design or by ways in which authors acknowledge any bias that might affect individual study results.

Results
By following PRISMA guidelines, 156 records were identified overall. Ninety-six studies remained after deleting duplicates. Two reviewers screened each abstract resulting in 14 exclusions. Eighty-two studies were assessed for eligibility of which 59 were included for qualitative synthesis ( Figure 2).
Characteristics of included papers (n = 59) are summarised in Table 4 in reference to alphabetically ordered first author, topic, study design and outcome. They are discussed in more detail below. Studies made use of quantitative (n = 26), qualitative (n = 31) and mixed-methods (n = 2) designs.
Individual study findings were synthesised into 10 subthemes. These were then integrated into four main themes ( Table 5). The first main theme speaks to the right not to be discriminated against (n = 36) and addresses inclusive education, inclusive communication and the right to be understood, acknowledgement of competence and capacity to be included, and socio-political participation and inclusive citizenship. The second theme addresses the right to psychological and bodily integrity (n = 11) in terms of protection against abuse, and the right of abuse victims to appropriate treatment. Thirdly, the right to be accommodated (n = 8) speaks to availability of appropriate services and subsequent access to these services. Finally, main theme four touches on challenges to rights realisation (n = 4), warns of barriers to support and considers obstacles to rights implementation.
The majority of included studies pertain to the right not to be discriminated against (n = 36) with inclusive education (n = 14) and acknowledgement of competence and capacity (n = 13) also enjoying focus. The right to psychological and bodily integrity (n = 11) enjoyed slightly more research interest than the right to be accommodated (n = 8) and challenges to realisation of rights (n = 4).
Rights issues that received the least amount of research attention throughout the review period include the right to be understood (n = 4) and availability of appropriate services (n = 2). Results show that the right to socio-political participation and inclusive citizenship requires urgent investigation (n = 1).
Although the Constitution and Bill of Rights still guides South Africa's post-democratic growth, ID remains excluded from socio-political discourses on equity and transformation. If meaningful transformation is only reached by including the whole of society, excluding PWID risks further discrimination and rights abuses of millions of South Africans.

Right to not be discriminated against
The right to inclusive education, inclusive communication, competence and capacity, and socio-political participation speaks to issues of discrimination (n = 36).
Popular belief that PWID are inferior opens them up to abuse and exploitation (Phasha & Myaka 2014). As vulnerable targets of stigmatisation and disenfranchisement, such discrimination is hard to overcome without support and advocacy (Carey 2003;Kamga 2016). Younger adults with ID from lower socio-economic areas who also have physical disabilities experience additional stigma (Ali et al. 2015). Disability exacerbates complicated issues of race and identity in South Africa, and black individuals with mild ID experience more stigma than white and mixed race PWID (Ali et al. 2015).

Inclusive education
The Bill of Rights entitles children and adults to basic education (s29.1a, RSA 1996). South Africa also interpreted and used international declarations to transition towards greater inclusion in education. The education system was meant to adjust in ways that would accommodate diverse learners' needs as inclusively as possible (Engelbrecht et al. 2003). Children with motor impairments were more likely to receive rehabilitation than those with intellectual impairment (p < 0.0001).
Little evidence found of cooperation between the health, education and social development departments.
Case study (Quantitative) Rights discourses Q-methodology The three rights claims (participation, special services and protection) should be re-examined through the lens of an ethics of care that enables participation, and that reconsiders reciprocity and interdependence.

Grounded theory study
After the Western Cape High Court 3 was petitioned on claims to education in 2011, the state was ordered to ensure -within reason -affordable access to adequate education for children with severe and profound ID (CSPID) (Du Plessis 2013; Mckenzie et al. 2017). The White Paper on the Rights of Persons with Disabilities (2016) now reinforces the enrolment of children with any severity of ID previously refused access (DSD 2016). Although the right to basic education is immediate, the state can still exclude PWID from educational settings by arguing reasonable grounds (Kruger 2015;Ngwena 2013). Up to 260 000 school-going aged children The state discriminates against CSPID, in particular, by using severity of impairment to disqualify them from compulsory education (Ngwena 2013

4.
Bornman (2002) The right to be understood Case study (Mixed method) Nurses' knowledge and skills in dealing with ID, PWID and caregivers is inadequate. Need for skills training identified. Bornman (1996) The right to be understood Case study (Quantitative) 38% prevalence rate of non-speaking CWID.

6.
Calitz (2011) Bodily and psychological integrity Opinion and analysis (Qualitative) Need future research on best way to assist PWID to navigate psycho-legal settings.

7.
Calitz (2014) Protection against abuse Case study (Quantitative) Burden of evidence to secure convictions rests on investigations and physical evidence.

8.
Calitz (2007) The right to competence and capacity Case study (Quantitative) It is possible for a person with ID to be triable and accountable.  Few urban CSPID under 4 years attend special care centres (Spangenberg et al. 2016), and even fewer do in rural areas where prevalence is higher but care centres in shorter supply (Huus et al. 2016). Although rural and urban caregivers are equally aware of rights to education (p = 0.001), urban caregivers believe more firmly that CWID have rights (p < 0.001) (Huus et al. 2016).
Including PWID in non-discriminatory educational communities is complicated. People with intellectual disability have vastly diverse educational needs and meeting them equitably will require the entire South African mainstream school-LSEN-care centre split system to change (Engelbrecht et al. 2003;Erasmus et al. 2016;Hall & Theron 2016  Rural CWID have higher levels of social maturity than urban CWID, perhaps indicative of environmental challenges and development of social competence.

Pillay (2008) The right to competence and capacity
Case study (Quantitative) Over 90% of PWID were able to testify, although 60% were not able to make an informed decision to consent to sexual intercourse. Distinctions in competency must be made irrespective of IQ-level.

Pillay (2010) The right to competence and capacity
Case study (Quantitative) Majority of sexual assault survivors with ID believe perpetrators should be imprisoned -indicates need for retribution and emotional response to hurtful experience.

Pillay (2011) Right to access services and be accommodated
Case study (Quantitative) PWID need help with obtaining social grants and school/occupational placements.

Pillay (2012a) The right to competence and capacity
Opinion and analysis (Qualitative) Facilitate testimony testimony while minimising discomfort and prejudicial treatment (like forensic testing of victims with ID).

Pillay (2012b) The right to competence and capacity
Opinion and analysis (Qualitative) Access to justice should be easier, not more difficult, for PWID.

Pillay et al. (2008) The right to competence and capacity
Opinion and analysis (Qualitative) Forensic mental health practice should better serve the needs and rights of rape survivors with ID.

Roberts (2016) Risks to realisation of rights Observational study (Crosssectional) (Quantitative)
Unmet dental needs of CWID is high.

Rohleder (2009) Protection against abuse
Case study (Qualitative) Tension exists between human rights discourse and of restriction of sexual behaviours.

Saloojee (2007) Right to access services and be accommodated
Case study (Quantitative) CWID more excluded from services than physically disabled children.

Shabalala (2011) Bodily and psychological integrity
Observational study (Case Control) (Quantitative) Higher rates of PTSD and symptom intensity in PWID and history of sexual abuse. Nonsexual traumatic events also result in psychological distress for PWID.
56. Slone (1998) Availability of appropriate services Case study (Quantitative) Referral of individuals with Mild ID was low from low-SES areas compared to high-SES areas; complicated by inadequate referral structures.

Slone (1999) Availability of appropriate services
Case study (Quantitative) Comorbidity not higher than previously reported; higher dual diagnosis prevalence in high-SES areas. No gender differences found. Study incorrectly reports support for positive relation between severity of ID and pervasiveness of psychopathology (correlation is negative).

Spangenberg (2016)
Realising inclusive education Case study (Qualitative) CSPID database will have multiple benefits for inclusion and services. (2015) The right to competence and capacity

Van Niekerk
Observational study (Cohort) SE services can be considered as a viable option in resource-constrained environments. Providers of SE services will need to modify approaches in order to meet contextual realities. ID, intellectual disability; PWID, people with intellectual disability; CWID, children with intellectual disability; CSPID, children with severe and profound intellectual disability; PTSD, post-traumatic stress disorder; UNCRPD, United Nations Convention on the Rights of Persons with Disabilities; LAMIC, low-to middle-income countries; FCG, family caregivers; SES, socioeconomic status; SE, supported employment.

Competence and capacity
Where competence relates to the ability to do something successfully or efficiently, capacity speaks to legal independence and participation during legal proceedings (UN 2006 Female learners subjected to school-based sexual violence defy misconceptions that PWID lack comprehension that their rights are violated, or lack competence to respond accordingly (Phasha & Nyokangi 2012). Disclosures of coercion, and of being threatened and humiliated for refusing male learners' sexual advances, evince awareness of rights to bodily and psychological integrity (Phasha & Nyokangi 2012). Capacity: Denying capacity legitimises discrimination and legally reinforces social prejudice against PWID (Pillay 2012a;UN 2006). Relative to severity level (e.g., mild, moderate, severe or profound ID), adults with mild and moderate ID can negotiate consensual sexual relationships with necessary support and guidance (Hough 2012;Phasha & Miyaka 2014;Reinders 2008). Yet in cases of sexual violence perpetrated against PWID, the burden to prove competency that consent was refused is on the survivor with ID (Pillay 2008(Pillay , 2012a(Pillay , 2012b. Despite the survivor's ability to give an account, legal determination of capacity to testify against the perpetrator is ultimately out of the survivor's hands and depends on results of mental health examinations (Phaswana, Van der Westhuizen & Krüger 2013;Pillay 2008Pillay , 2010Pillay , 2012aPillay & Kritzinger 2008;Pillay & Sargent 2000). Augmentative and alternative communication can enable courts to consider various forms of non-conventional proof of capacity and competence to give testimony (Bornman et al. 2011).

Inclusive citizenship
Citizenship provides legal status and involves participating freely in a particular national space on condition of honouring various rights and duties (Yeung, Passmore & Packer 2008

Right to psychological and bodily integrity
The second theme addresses the right to psychological and bodily integrity (n = 11).
Despite attempts at advancing legislation and public awareness around ID, individuals with ID appear to be easy targets for perpetrators of sexual violence. Sexual abuse of teenagers with ID is widespread, yet they experience compounded difficulties when navigating the justice system. In light of the vulnerability to sexual assault and becoming a victim of crime in South Africa, communicative capacity and being understood becomes especially important during subsequent legal proceedings

Protection against abuse
Female PWID are at increased risk of sexual abuse, that of teenagers with ID is common, and close relatives are http://www.ajod.org Open Access implicated in most cases of sexual assaults against CWID (Bornman & Rathbone 2016;Calitz et al. 2014;Meel 2009;Phasha 2009Phasha , 2013. Perpetuating such rights violations are misconceptions that PWID have a high sex drive, possess unusual power and feel no pain, and that sex with PWID is an act of pity and can cure the perpetrator of disease (Phasha & Myaka 2014).
Survivors with ID are particularly vulnerable to psychological effects of sexual assault and present with higher rates of posttraumatic stress disorder and symptom intensity than ID individuals with non-sexual traumatic histories (Shabalala & Jasson 2011). Given these increased vulnerabilities, it is unthinkable to exclude PWID from sexual education programmes (Yildiz & Cavkaytar 2017). Without access to sexual health education, PWID will continuously struggle to protect themselves against unwanted sex, pregnancy and transmittable infections (Bornman & Rathbone 2016;Meel 2009;Rohleder & Swartz 2009 Individuals with severe and profound ID will find it harder to negotiate consent around sexual practices. Interventions aimed at reducing incidence of sexual abuse of PWID can occur in formal educational and informal community settings (Phasha & Myaka 2014). For example, traditional healers hold high esteem among many South Africans, and customary notions that jeopardise rights of PWID can be reconceptualised with these individuals (Kromberg et al. 2008;Phasha & Myaka 2014).

Right to appropriate treatment: Health, justice and well-being
Tackling ID needs at primary health care level can advance universal services and foster integration of PWID into the national health system (Molteno, Adnams & Njenga 2011;Petersen 2004;Pillay & Siyothula 2011). High rates of sexual violence warrant mental and physical health interventions for PWID at primary health clinics (Phasha 2013;Shabalala & Jasson 2011).
We appreciate that sexual assault cases involving complainants with ID challenge the South African investigative and judicial systems (Calitz 2011;Pillay & Kritzinger 2008). Decisions about an ID survivor's ability to testify should not only depend on measures of intellectual functioning but consider self-determination as well (Phaswana et al. 2013). Appropriate mental health and legal services for ID rape survivors can aid justice and equality under the law (ss9.1 and 9.2) (RSA 1996).
The Sexual Abuse Victim Empowerment (SAVE) programme exemplifies a not-for-profit project established for complainants with ID in sexual assault cases (Dickman & Roux 2005). Since 1990, SAVE has advised investigators and prosecutors, addressed complaint-specific service needs like court preparation and availed expert testimony (Dickman & Roux 2005). By 2005, conviction rates similar to the best rate for sexual assault cases in the general population were achieved (Dickman & Roux 2005). Since then, justice for ID victims of sexual assault has lost some ground (Pillay 2012b), and the White Paper on the Rights of Persons with Disabilities admits that police lack disability service skills and have reservations about responding to complaints on behalf of PWID (Department of Social Development 2016).

Right to be accommodated
The lack of reliable and affordable public transport infrastructure and expenses incurred to access private transport, as well as the high rate of human immunodeficiency virus infection and acquired immune deficiency syndrome (HIV and AIDS) and its prioritisation in the primary health care system, serve to complicate access to state-subsidised primary care medical services throughout South Africa. The right to be accommodated (n = 8) speaks to subsequent access to available and appropriate services for PWID.

Availability of appropriate services
Most PWID in South Africa likely suffer poor nutrition and live in socio-economically distressed areas that further predispose them to negative outcomes (Pillay & Siyothula 2011;Slone et al. 1998Slone et al. , 1999. The majority of families who care for dependent PWID rely on monthly social grants of R1600 (± USD124 at the time of writing) (South African Social Security Agency 2017), and one in four families frequently go without food before their next grant pay-out (Pillay & Siyothula 2011).
Unmet service needs of PWID combined with poverty create a dire situation for PWID (Adnams 2010;De Vries et al. 2013;McKenzie et al. 2013b;Saloojee et al. 2007;Tomlinson et al. 2014). Nonetheless, there is little evidence of service integration among South Africa's health, education and social development departments in meeting these needs (Saloojee et al. 2007), whereas the opportunity costs of informal ID care remain unrecognised (McKenzie et al. 2013b).
Further, rights concerns pertain to ill-treatment of PWID by health workers (Newton & McGillivray 2017). Disconcertingly, primary health nurses are potential sources of support and often the first professional contact for families caring for PWID (Bornman & Alant 2002). Ill-treatment of PWID and their caregivers could be reduced by up-skilling primary health care professionals with knowledge of ID care (Bornman & Alant 2002). Community-based services for PWID can be supported by implementing and monitoring task-shifting of appropriate assessment, intervention and referral services (Geiger 2012;Petersen 2004;Shabalala & Jasson 2011).

Access to available services
People with intellectual disability in South Africa remain excluded from services that could encourage their well-being http://www.ajod.org Open Access (Adnams 2010;McKenzie, McConkey & Adnams 2013c;Molteno et al. 2011). Children with intellectual disability, for example, are five times less likely to receive rehabilitation services than physically disabled children (p < 0.0001) (Saloojee et al. 2007).
Owing to funding difficulties, community homes for adults with ID focus on custodial rather than participatory socio-political practices (McKenzie et al. 2013c). Although community-based residential and occupational programmes can enable socio-economic participation (DSD 2016), the misconception that PWID are economically unviable or unable to contribute financially to their communities violates their socio-economic rights (Dowse 2009;McDonaugh 2008). Adults who contribute in the form of child care, household chores and social grants feel exploited rather than valued for their role (McKenzie 2016;McKenzie et al. 2013c).
Adults with ID who also have behavioural, physical and mental health difficulties face multiple barriers to accessing necessary services (De Vries et al. 2013;McKenzie et al. 2013b). Mentally ill PWID may experience marginalisation in an amplified manner by being sequestered as less interesting yet more bothersome members of disabling societies. Given the direction of power in such settings, any protest on their part or 'suggestions ... about care are likely to be taken as resistance or obstruction' (Tronto 2010:165), confirming their status as less than equal adults.

Challenges to rights realisation
Finally, challenges to realisation of rights (n = 4) warns of barriers to necessary levels and kinds of support and considers obstacles to rights implementation. People with intellectual disability struggle to exercise their constitutional rights when confronted with service barriers and low political prioritisation of care (Department of Health [DoH] n.d.; Donohue, Bornman & Granlund 2014;Huus et al. 2015). Rights to health are hampered by shortages of professionals with ID training, unavailable medications typically indicated for treatment, obstructive referral pathways, travelling to multiple medical facilities for various interventions and poverty (Huus et al. 2015).
The majority of children with disabilities in South Africa do not attend compulsory school and a lack of clear policy constrains inclusive education (Donohue & Bornman 2014. Children with physical disabilities who also have ID will most likely be excluded from receiving assistive devices and rehabilitation (Alper & Goggin 2017;Boot et al. 2017;Donohue et al. 2014Donohue et al. , 2015Saloojee et al. 2007;Spangenberg et al. 2016). Moreover, CWID are at increased risk of abandonment, abuse, multiple handicap, behaviours that challenge but may be phenotypical, co-morbid psychiatric difficulties, preventable illnesses and poor physical and dental health (De Vries et al. 2013;Dickman & Roux 2005;Giarelli et al. 2009;Molteno et al 2001;Pillay 2012aPillay , 2012bPillay & Kritzinger 2008;Roberts et al. 2016;Van Rensburg 2007).

Discussion
Underestimating pervasive ableism in South Africa trivialises the exclusion of PWID from realising their rights. Public infantilisation, abuse and taunting perpetuate the isolation of PWID who may find themselves caught between negative public perceptions and attempts at community, occupational and socio-political inclusion. South Africa's political rights (s19.3a, RSA 1996) indiscriminately entitle prison inmates to vote in elections, whereas citizens with ID face multiple barriers to exercise this right (Combrinck 2014;Hartley 2013;Kopel 2017;Ndenze 2013;Swart 2015). South Africa's 'unsound mind' aphorism maintains an outdated justification for disenfranchising PWID regardless of contemporary support (Article 29a, UN 2006) and successful suffrage elsewhere in the world (Hood 2014;Kjellberg & Hemmingsson 2013;The Electoral Commission UK 2015).
Denial of competence and legal capacity are also fundamental ID rights violations that perpetuate discrimination and exclusion. Given contemporary interpretations of legal capacity and equality under the law (Article 12, UN 2006), the onus of proving that PWID are (un)able to participate in legal proceedings that impact their lives should be on the court -not on the survivor with ID.
People with intellectual disability are often targets of sexual violence, but obtaining justice for survivors with ID is difficult in South Africa. We thus question whether sexual assault survivors who have ID, after suffering trauma and perhaps undergoing a medico-legal examination, must undergo still further evaluations before being deemed fit to testify to their account of events (Pillay 2008). Why should rape survivors with ID have to submit to testing at all, as opposed to perpetrators proving they were unaware of their victims' intellectual impairment? Having to competently 'pass' a mental health exam prior to having capacity bestowed makes it harder for PWID to obtain justice, not easier. This approach to litigation might actually violate the dignity, equality, bodily and psychological integrity, and protection of PWID against discrimination by the state on grounds of disability (RSA 1996). Having ratified the UNCRPD (UN 2007), should the state not honour Article 12.3 and provide any means necessary to equitably meet the needs of PWID in the criminal justice system? The forensic examination of sexual assault survivors with ID should be critically (re)considered -no matter the levels of support required in the absence of mental health testing (Prinsloo 2008;Tronto 2010).
Furthermore, justice for offenders with ID must also be considered. Offenders may understand truth, lies and moral wrongfulness but be less able to link these to real implications. Knowing right from wrong should be differentiated from successful applications of social insight and adaptive skills in appreciation of the consequences of wrongfulness. We question denying ID defendants the opportunity to testify in their own defence. A finding of intellectual impairment need not summarily disqualify one from testifying, because defendants with comparatively better adaptive than intellectual functioning can be triable (Calitz et al. 2007;Pillay 2012aPillay , 2012b. The disenfranchising South African 'unsound mind' aphorism is again criticised, because PWID are not automatically without capacity (Combrinck 2014; Phaswana et al. 2013).
In returning to our ID definitions, legal capacity requirements that emphasise adaptive abilities might challenge a medical underscoring of intellectual deficit. Because abilities to observe, remember and communicate can be established during testimony, defendants might be enabled to give evidence -if so advised by legal representationnotwithstanding conventional 'test' findings of intellectual deficit (Pillay 2008(Pillay , 2012a(Pillay , 2012bPillay & Kritzinger 2008 (Makgoba 2016).
In light of the lacking legislation as discussed above, we turn to the Esidimeni care crisis, violations of the constitutional right to life (RSA 1996) and the urgency of purposeful community safety requirements of PWID. The Esidimeni crisis started in 2016 and marks the deaths of more than 140 adults in community care after being discharged from a specialist care facility by the Gauteng Health Department (Bornman 2017;Lund 2016;Rahlaga 2017;Tlhabye 2017).
Although at least half of the deceased lived with ID in the absence of psychiatric illness, a well-intended Ombud report (Makgoba 2016) obscured distinctions between mental illness and ID and thus dismissed the particular vulnerabilities and service needs of individuals who live with either or both. With no statutory framework or legislated minimum threshold of community care to answer to yet, the state currently maintains no legal obligation to perform adequate safeguarding of adults with ID.
Despite deinstitutionalisation, PWID remain isolated from communities in which they feel victimised, rarely participate in basic education and skills development programmes and struggle to find appropriate work placements without help. The need remains for protective and participatory communitybased services, but these must be developed and monitored in line with purposeful care and safe community inclusion. This is particularly urgent as results have shown. When family caregivers burn out or die, PWID are left with limited options. Few relatives or neighbours willingly take on the support needs of PWID (Geiger 2012), whereas community care facilities are in short supply and have years-long waiting lists.
As it is the right to inclusion of every person in South Africa, PWID should also be able to have their health needs initially assessed or met at primary health care level, yet are often redirected to specialist settings for services that could have been delivered at their local clinics. In the same vein, a lack of ID awareness at primary care level results in PWID getting lost to referral services in cases where they should have been receiving specialist intervention.
We end this discussion by suggesting that one way to reduce discrimination against PWID is to encourage equitable practices that include and rely on the expertise of people living with ID. In just societies that celebrate self-determination, assistance is commonplace, and barriers to developing adaptive abilities are removed to increase competency.

Practical implications
In returning to our aims and objectives, we now see that PWID in South Africa face more difficulties than the general population when attempting to access justice, health, educational, employment and social services. Prejudice increases violence against PWID, but negative bias excludes them from public health and safety campaigns. There is a need to address such discrimination through advocacy interventions similar to those employed in other national rights campaigns, like the HIV/AIDS Treatment Action Campaign 4 (tac.org.za).
Legislation for vulnerable adults with ID is yet to be advocated for and taken up in protections, services and policies in South Africa. An adult at risk is any person who is aged 18 years or over and at risk of abuse or neglect because of their needs for care or support. We all require opportunities to realise our constitutional rights. People with intellectual disability require encouragement to participate in the socio-political lives of their communities, whatever forms these take. Sufficient support will exceed minimal levels but must be provided -whether these offers are taken up will remain every individual's choice, but must be made available (Stein & Stein 2007;Tronto 2010). Exercising ID rights implies negotiating not only with individuals who aim to support ID voices, dismantle restrictions and develop political behaviours but also with those who prefer to maintain barriers. Because compliance and resistance to inclusive processes can be expected, self-advocacy groups and local ID organisations must be sustained.
Students from various disciplines enthusiastic about working with PWID will be better prepared for meeting ID care needs if trained as integrated practitioners (Geiger 2012;Roberts et al. 2016). Instructors with ID can broaden practitioner understanding, and future service designs can integrate the experience of PWID and their caregivers (Grut et al. 2012). Continuous professional development and journal clubs can keep practitioners current on best practice (Donohue & Bornman 2015).
Rights realisations for PWID requires eliminating stigma, encouraging inclusive practices, opportunities for occupational skills development, access to job coaching and supportive employers and pathways out of poverty. Dispelling stereotypes and presumptions, campaigning for quality primary ID health care, advocating for legislative support and lobbying political will could reduce the risk of life-threatening discrimination against PWID (Makgoba 2016).

Implications for research
South African ID rights researchers have aligned their arguments with the Bill of Rights (RSA 1996) and global disability initiatives like the UNCRPD (Drew et al. 2011;UN 2006). Knowledge on ID is still predominantly located in non-intellectually impaired individuals, mostly at universities from which PWID are excluded. If projects are not driven by people with intellectual impairment, their experiences of disablement must at least be included during service development and research planning phases.
Although inclusive research locates PWID as co-researchers, emancipatory research encourages principle researchers with ID to select topics, collect and analyse data and publish in accessible journals with necessary support as required. Both approaches can realise the right of PWID to create and claim knowledge on ID matters (Capri & Coetzee 2012). Consulting with self-advocates and researchers with ID can not only change the way ID is understood and responded to in South Africa but also collect opinions of PWID on issues that affect their lives directly.
Rights issues that received the least amount of research attention throughout the 25-year review period include the right to be understood (n = 4) and the lack of appropriate services (n = 2). The right to socio-political participation and inclusive citizenship requires urgent investigation (n = 1). There are opportunities for researching the experiences and attitudes of primary health care workers towards PWID and for addressing a lack of South African evidence regarding support and interventions for offenders with ID. The sexual rights and health of PWID, and rights to parent, can be included as neglected fields of study and advocacy.

Limitations
We aimed to describe published studies on advocacy, addressing stigma and promoting ID rights and awareness in South Africa. It is beyond the scope of this review to include work on ID in South Africa that has not been published in peer-reviewed journals (i.e. 'grey literature'), and this limitation can contribute to publication bias.
Although arguments on therapeutic sterilisation were rationally and logically presented by Nash and Navias (1992) over two decades ago, it must be noted that the context of sterilisation of PWID in South Africa has changed significantly since 1992. The authors uncritically argue that persons with mild ID would not be able to provide consent for sterilisation. The findings of this particular article might have been acceptable at the time, but are certainly not tolerable in 2017 (at the time of writing), and it is doubtful whether it would garner support from current clinicians in the field. Donohue et al. (2014) recognise that their results are limited by the sample of CWID selected to participate in their study and that their findings cannot be generalised as representative of experiences of all CWID in South Africa. Despite inclusive education service delivery problems, we must highlight that there are approximately 423 schools for LSENs in South Africa.

Conclusion
Our scoping review investigated pertinent issues relating to the rights of PWID in South Africa. We incorporated available research evidence in a synopsis of 59 eligible studies, addressed implications for practice and identified areas for future investigation. Realising the rights of PWID in South Africa to participate as socio-political equals, access services, own their psychological and bodily integrity, and move freely without discrimination is an ongoing project.
Barriers to exercising these rights were highlighted. Research evidence advocates that -for a start -the rights and needs of PWID be taken up with serious commitment by the South African state, its legislature and public service departments. Statutory obligations to protect and realise the rights of any South African must extend to PWID and their supporters who are forging ahead in a disabling and service constrained socio-political environment.
Turning back to the continuum of 'changing states of impairment and health' (Swartz et al. 2012:1), Kittay et al.'s (2005) myth of independence helps us realise that being human can be defined not by commonly shared characteristics (e.g. high-level cognitive functioning), but by what all human beings are not. We are not immune to the injurious fragility of bone and brain, we are not of able mind and body permanence and we are ultimately never independent.
Although still occupying a space on the fairly healthy end of Swartz et al.'s (2011) continuum, we may find it difficult to imagine ourselves in a future impaired, ill or injured state. But we must take cognisance of a universal human frailty so that we can face our own inescapable fragility with dignity and justice, secure in the protection against violence of moral, psychological and physical abuse.