The role of national human rights institutions in advancing Article 19 of the UN Convention on the Rights of Persons with Disabilities on the Right to Live Independently and be Included in the Community

2.1 The UN Convention on the Rights of Persons with Disabilities

Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD) provides for the right for all persons with disabilities to live in the community as equal citizens. The right of all persons with disabilities to live in the community is not explicitly provided for in any treaty prior to the CRPD.8 However, the right to live in the community is not a new right but rather, a creative interpretation of existing rights that has been specially tailored to apply to the context of persons with disabilities.9 In particular, the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities provides that:10

Persons with disabilities are members of the society and have the right to remain within their local communities. They should receive the support they need within ordinary structures of education, health, employment and social services.

Additionally, General Comment 9 of the Committee on the Rights of the Child (2006) states that young children should never be institutionalised solely on the grounds of disability.11 It is worth noting, however, that General Comment 9 of the Committee on the Rights of the Child does not prohibit institutionalisation absolutely. In this regard, General Comment 9 calls for state parties to ‘use the placement in institution only as a measure of last resort, when it is absolutely necessary and in the best interests of the child’.12 This underscores the fact that institutions are generally not best suited to provide care for children. It is now necessary to turn to the content of article 19 of the CRPD.

Article 19 of the CRPD calls upon state parties to ensure that:

• Persons with disabilities have the equal opportunity to choose where and with whom to live;
• A range of community-based services is availed to persons with disabilities to support inclusion; and
• Services and facilities available for the general population are available to persons with disabilities and responsive to their needs.

The UN Committee on the Rights of Persons with Disabilities has developed a General Comment on article 19 of the CRPD.13 Although General Comments provide expert interpretations to treaty provisions,14 it is worth noting that they lack binding legal force.15 Nevertheless, General Comments are useful in clarifying state obligations in relation to the specified treaty provisions.

The General Comment on article 19 of the CRPD16 identifies eight core elements of the article. The first is the right to exercise legal capacity in determining where and with whom to live.17 Secondly, is the principle of non-discrimination in accessing accessible housing.18 Thirdly, is the requirement to expand options for persons with disabilities to live independently in the community, beyond the support provided by family.19 The fourth core element of article 19 is the requirement to ensure that basic mainstream services are accessible to persons with disabilities in both law and practice.20 Fifth is the requirement to develop a concrete action plan on implementing personalised, rights-based disability-specific support services.21 The sixth core element requires that states ensure non-retrogression in achieving the content of article 19 unless in accordance with international law.22 The seventh element requires the collection of quality data on persons with disabilities, regardless of their place of residence.23 The eighth and final core element calls for the use of any available funding, including regional funding and funding for development cooperation, to develop inclusive and accessible independent living services.24

The core elements identified above underscore the interrelation and interdependence of rights, and of particular interest for present purposes is the relationship between articles 12 and 19 of the CRPD. As is stated in the General Comment on article 19 of the CRPD,25 the right to ‘choose and decide how, where and with whom to live is the central idea of the right to live independently and be included in the community’.26 This clearly entails an exercise of legal capacity. A question that may arise in this regard is whether one can exercise legal capacity to live in an institution. It is the view of the authors that all too often, there is a lack of options to choose from, and therefore, currently, the ‘choice’ to live in an institution is not a real choice as it is driven by a lack of alternatives. Furthermore, as the General Comment elucidates, individual choice includes:27

all aspects of a person’s living arrangements: the daily schedule and routine as well as the way of life and lifestyle of a person, covering the private and public spheres, every day and in the long term.

It is difficult to fathom how the above aspects of individual choice may be achieved in an institutional setting.

At the same time, it is worth acknowledging that the full realisation of article 19 depends on ‘progressive achievement’ of those parts of article19 that are progressively applicable (economic, social and cultural rights). These are article 19(b) and (c).28 In this regard, state parties have an immediate obligation to design concrete strategies, and resources to develop support services as well as making existing, and new, general services inclusive for persons with disabilities. 29

2.2 The Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa

In addition to the CRPD, the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa provides for the right of persons with disabilities to live in the community under article 14. While the Protocol has not yet come into force,30 it is important to compare article 14 of the Protocol with article 19 of the CRPD in order to clarify similarities and/or differences between the two provisions and resultant state obligations. Notably, the text of the Protocol is largely similar to that of the Convention, except for a few critical elements as discussed in this sub-section.

Unlike the CRPD, the Protocol explicitly provides for the right of persons who require intensive support to have access to respite care services/caregivers.31 This is critical, in the light of the fact that most African countries lack support for living in the community as will be discussed below under section 3 entitled: ‘Issues of concern on implementing the right to live independently in the community in selected African states’.

An additional difference between the Protocol and the CRPD is that the Protocol requires that Community Based Rehabilitation (CBR) should be provided in ways that enhance the inclusion of persons with disabilities in the community32 (in other words, CBR should not be based on a medical model approach of ‘fixing’ the person). Unlike the CRPD, the Protocol also requires that community living centers organised or established by persons with disabilities be supported to provide training and peer support, among other services to persons with disabilities. 33

As stated in the introduction, article 19 of the CRPD entails civil and political as well as economic, social and cultural rights. In this regard, the principle of progressive realisation of rights as outlined in article 4(2) of the CRPD is critical. Article 4(2) of the CRPD makes a distinction between rights that are to be progressively realised and those that are immediately applicable. It states that in relation to economic, social and cultural rights, each state party shall take measures to the maximum of its available resources, with a view to achieving progressively the full realisation of these rights. The Protocol does not make this distinction expressly. Article 4(a) of the Protocol calls upon states to adopt ‘appropriate measures for the full and effective implementation of the rights recognised in the present Protocol’. Under the Protocol, the language of progressive realisation is only expressly utilised in relation to articles 15(2) on accessibility and 16(3)(d) on the right to education.

4.1 Why NHRIs are well suited to advance article 19 of the CRPD

Many of the issues discussed in the foregoing section reveal system deficits that National Human Rights Institutions (NHRIs) are ideally placed to address and help resolve, given their broad mandate to promote and protect human rights under the Paris Principles.53 NHRIs, especially those that are compliant with the Paris Principles, play a critical and unique role in the promotion and protection of human rights at national level,54 while treaty and charter-based mechanisms play a critical role at an international level in assessing state compliance with human rights treaties. In essence, human rights protection and promotion cannot be achieved without effective national human rights systems. In this regard, state parties bear the primary responsibility of respecting, protecting and fulfilling rights obligations, and NHRIs created in compliance with Paris Principles form part of the central elements of a strong national human rights system that contribute to the promotion and protection of human rights at national level.55

The recognition of the importance of NHRIs in implementation of the CRPD can be found under article 33(2) of the CRPD. Article 33(2) obligates state parties to designate or establish one or more independent mechanisms to promote, protect and monitor the implementation of the Convention taking into account the Paris Principles. Article 33(2) has been noted as one of its kind in monitoring implementation of treaty obligations at national level. As observed by GD Beco:56

Human rights treaties define which rights States should respect, protect and fulfil. However, these treaties do not determine through which means they should do this ... In contrast, Article 33(2) of the CRPD provides that States should designate or establish one or more independent mechanisms to promote, protect and monitor the implementation of Convention taking into account the Paris Principles ... the inclusion of obligation to create independent mechanisms is a recent phenomenon.

This means that article 33(2) requires state parties to maintain, strengthen, designate or establish within the state party one or more independent mechanism or mechanisms to promote, protect and monitor implementation of the Convention. The state party may choose to appoint an existing body or bodies and empower them with the mandate to promote, protect and monitor the implementation of rights contained in the Convention.57 The body designated to be an independent mechanism or part of bodies that are so designated must be compliant with the Paris Principles.58

4.2 The role of NHRIs in advancing article 19 of the CRPD and potential limitations

This section examines the role of NHRIs in advancing article 19 of the CRPD using the case study of the Kenyan NHRI, the Kenya National Commission on Human Rights (hereinafter KNCHR or the Commission).59 The Commission is the designated national monitoring agency under article 33(2) of the Convention on the Rights of Persons with Disabilities.

NHRIs can support the enjoyment of article 19 of the CRPD by persons with disabilities in a variety of ways. First, NHRIs can advocate for the development of a well-defined legislative framework on deinstitutionalisation and independent living community support services to encourage the inclusion of persons with disabilities.60 NHRIs can make recommendations on this matter during review of bills and policies for compliance with human rights standards. This is in line with the responsibilities envisaged for NHRIs under the Paris Principles. Under the Paris Principles, NHRIs should advise and provide opinions, recommendations, proposals and reports to the government, parliament or other responsible organ on legislative or administrative provisions.61

Critical bills and policies that might present significant opportunities for deinstitutionalisation (in law) include mental health laws as well as stand-alone ‘persons with disabilities’ laws. This would be in line with General Comment 5 (2017) on living independently and being included in the community, in which state parties are required to adopt a national strategy on living independently and being included in the community and prevent the isolation or segregation of persons with disabilities.62 In this regard, KNCHR has been at the forefront of advocating for amendments to Kenya’s Mental Health Act, 1989 to render the Act more in line with the UN Convention on the Rights of Persons with Disabilities. Accordingly, the Commission has advised the National Assembly that the mental health law should: 63

Avoid institutionalization and medicalization of children to the greatest extent possible. The law should explicitly recognise that institutionalization is detrimental to the development of the child, and contain a general principle to the effect that every effort shall be made to provide support and treatment of children through community health services. The law should ensure that children and adolescents with mental health conditions are provided with early intervention through evidence-based psychosocial and other non-pharmacological interventions based in the community, avoiding institutionalization and medicalization.

While the advisory role is critical to the effectiveness of NHRIs in advancing human rights,64 one disadvantage related to this is that states may disregard the recommendations of NHRIs, which are not binding.65 Indeed the implementation of recommendations made by NHRIs depends upon the commitment of other state departments to act on findings made by NHRIs and their capacity to do so.66 To militate against this, NHRIs should endeavour to develop and maintain good relationships with relevant government agencies to facilitate dialogue where appropriate. This calls for carefully balancing between the adviser and adversarial roles played by NHRIs.67 It is also important for NHRIs to foster strong partnerships with business and civil society actors at national level in order to amplify efforts.

The second role of NHRIs in advancing article 19 of the CRPD relates to their mandate in ensuring compliance with obligations under treaties relating to human rights.68 The Paris Principles prescribe that NHRIs should bolster ratification and implementation of international human rights instruments.69 NHRIs are also required to contribute to national human rights reports to treaty body mechanisms and where necessary express an independent opinion on matters discussed.70 This entails the issuing of parallel reports to treaty body mechanisms in relation to treaties that have been ratified by the specific state. In this regard, NHRIs can make recommendations to advance article 19 of the CRPD in their parallel reports or in their engagements with special UN mechanisms (not limited to the UN Convention on the Rights of Persons with Disabilities). Such recommendations may call upon the treaty body/special mechanism to require the state in question to take any of the following steps:

1. Provide grants and budgetary allocations to persons with disabilities to promote independent living in the community covering support for assistive devices, guides, sign language interpreters, affordable skin-care protection for persons with albinism,71 and cash transfer schemes for personal assistance services.72 (This recommendation may fall under the parallel report on the International Covenant on Economic, Social and Cultural Rights).
2. Adopt the necessary measures to prevent isolation or segregation of persons with disabilities from the community by being hidden in the family, or in segregated institutions.73 (This recommendation may fall under the parallel report on the Convention Against Torture).
3. Systematically provide information to all persons with disabilities, including migrant workers with disabilities and their families, on how to access support services and assistance.74 (This recommendation may fall under the parallel report on the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families).
4. Ensure accessibility to community services and facilities by all persons with disabilities in all areas of life, as well as home and community-based care for children with disabilities, particularly in rural areas.75 (This recommendation may fall under the parallel report on the Convention on the Rights of the Child).

In relation to the above, the Kenya National Commission on Human Rights’ 2019 parallel report on the third cycle of the Universal Periodic Review76 noted violations on the right of persons with disabilities to live independently in the community and made the following recommendations:77

1. Amend Sections 10(3), 14, and 16 of the Mental Health Act which allows for involuntary detention of users of mental health services in consultation with organizations for/of persons with disabilities;
2. Develop action plan to support de-institutionalization and transition to community based mental health service;
3. Provide state funded support services for persons with disabilities at community level, including caregivers, respite services, peer support and personal assistance services.

Parallel reports by NHRIs may influence the Concluding Observations issued by treaty body mechanisms to a specific state. While Concluding Observations are very valuable expert interpretations, they are often not widely disseminated and the public in the given country often remains unaware of them. In many cases, states pay little attention to their implementation.78 This illustrates why it is critical for NHRIs to effectively play their role in relation to promoting compliance with obligations under treaties relating to human rights.

The third role that NHRIs may play to advance article 19 of the CRPD relates to monitoring, especially in relation to NHRIs which have already been designated as the monitoring agencies under article 33(2) of the CRPD as discussed in section 4.1 above. In this regard, NHRIs can monitor the extent to which Concluding Observations on article 19 are implemented. They can also monitor non-compliance with progressive national legislation that may advance article 19 of the CRPD.79 In addition, NHRIs can, for example, regularly and closely monitor places where children are institutionalised and advocate for the development of family and community-based alternatives for those deprived of a family environment.80 Monitoring should also include mental health institutions. In relation to mental health institutions, the World Health Organisation has developed a human rights-based toolkit for monitoring entitled the

QualityRights Toolkit,81 which has a specific module on the right of persons with disabilities to live independently in the community. NHRIs should be keen to partner/collaborate with health ministries towards use of the WHO QualityRights Toolkit in monitoring mental health institutions. The Kenya National Commission on Human Rights is already involved in this process.82

NHRIs should ideally monitor the extent to which relevant authorities follow the recommendations set forth in the monitoring reports. This presupposes a good working relationship with government departments,83 as NHRIs may require information from these departments in order to assess progress on implementation of recommendations. The inherent limitation is that governments may take the NHRI’s advice on small points, while pressing ahead with actions that breach human rights commitments.84 NHRIs can mitigate this by using courts or specialised tribunals as avenues to enforce recommendations in specific instances where their recommendations have been ignored or rejected.85 However, the ability of NHRIs to effectively leverage on this mandate must be accompanied by structural baseline commitments such as the ability to intervene in court cases relevant to human rights and the authority to take recommendations to court for enforcement. 86

The fourth role that NHRIs can play to advance article 19 of the CRPD relates to receiving and investigating complaints about alleged violations of the right of persons with disabilities to live independently and be included in the community. The Paris Principles require that national institutions be vested with specific mandate to protect human rights,87 which may entail activities such as receiving, investigating and resolving complaints.88 The Paris Principles do not require for NHRIs to have the power to receive complaints for alleged human rights violations,89 but where an NHRI is provided with this mandate it is expected to handle the complaints fairly and effectively.90 Therefore, NHRIs should, on receipt of individual complaints revealing a violation of article 19 of the CRPD, take steps to secure appropriate redress.

In order to effectively handle complaints, NHRIs should be easily accessible to members of the public.91 Unfortunately, this is not always the case as some NHRIs are not in a position to establish offices within easy reach of the whole population and digital access may also be limited by various factors. In other cases, NHRIs may be inundated with complaints and lack adequate resources and personnel to handle the complaints effectively.92 NHRIs can militate against this by advocating for higher budgetary allocations from government, as well as seeking alternative sources of funding where appropriate.

The fifth role that NHRIs can play to advance article 19 relates to their function in advancing economic, social and cultural rights generally, and in particular the right to housing. Notably, there are ongoing projects to upgrade slums in many African countries, including Kenya, and such projects should be inclusive of persons with disabilities. In this regard, the Kenya National Commission on Human Rights was ordered by the High Court in the case of David Ngige Tharau & 128 others v Principal Secretary Ministry of Lands, Housing and Urban Development & 2 others93 to oversee the allocation of houses in the Kibera Slum Upgrading Process to ensure that only genuine beneficiaries benefitted from the project.94 Where opportunities to advance economic, social and cultural rights are present, NHRIs should ensure that the principle of non-discrimination95 is applied in fulfilling these rights so that persons with disabilities are not left behind.

In carrying out the above roles, NHRIs must ensure the active participation of persons with disabilities and their representative organisations96 in accordance with articles 4(3) and 33(3) of the CRPD.

4.3 The potential role of NHRIs in advancing article 19 of the CRPD

As was stated in the introduction, the Paris Principles require that national institutions be vested with specific mandate to promote and protect human rights.97 The Office of the High Commissioner for Human Rights understands promotion as those functions needed to change attitudes and behaviour which may include education, outreach, publications, training and capacity building and advising and assisting governments.98 NHRIs should therefore take up the mandate to educate and inform state and non-state actors about article 19 of the CRPD. One of the reasons why persons with disabilities fail to fully enjoy the right to live in the community is stigma and negative attitudes that cause families to hide family members who have disabilities.99 NHRIs should raise public awareness about the inherent worth of all persons, including those with disabilities, in order to create more inclusive societies.

Many NHRIs have an express or implied mandate to hold public inquiries, either in relation to a single serious incidence or more often in relation to systemic or general human rights issues.100 The inquiry process enables NHRIs to examine an issue in depth and from a human rights perspective.101 For these purposes, NHRIs have full powers to compel testimony and witnesses.102 NHRIs may also choose to convene inquiries on issues of interest, but without utilising coercive powers. In this regard, NHRIs may rely on voluntary witnesses and seek the contribution of members of the public and NGOs without the formal powers of a more formal and adversarial process that is based on statute.103 Although public inquiries are resource intensive, conducting them can help promote respect for rights and raise public awareness.104 In relation to article 19 of the CRPD, an inquiry could be held in response to a serious incident, for example, allegations of abuse of institutionalised individuals residing in a mental health facility. This may require an NHRI to compel testimony and witnesses, and is best suited for NHRIs that have investigative powers. 105 NHRIs can also hold a (non-coercive) inquiry to understand the extent to which persons with disabilities are able to access support services, or the extent to which they experience isolation and segregation from the community contrary to article 19(b) of the CRPD.

As part of their mandate to protect human rights, many NHRIs can intervene in court proceedings as a ‘friend of the court’ in cases involving significant human rights issues.106 Some NHRIs can also initiate cases that are either of broad public interest or that would have a significant impact on advancement of human rights.107 This includes rights of persons with disabilities, including their right to live independently in the community.