Human Rights Watch welcomes the opportunity to provide information to OHCHR to inform its expert workshop on the centrality of care and support from a human rights perspective and the High Commissioner’s subsequent report. Below, we present information on (1) older persons’ access to community- and home-based care and support services in South Africa, and (2) care and support policies for persons with disabilities in Mexico.[1]

As the OHCHR has pointed out, with the exception of phrases such as health care or respite care, the term “care,” as used regarding persons with disabilities, refers to children, whereas when it comes to adults with disabilities the correct term should be “support.”[2] Organizations of persons with disabilities and human rights organizations, including Human Rights Watch, have made clear that support can take various forms.[3] Below we refer to “care and support” in South Africa in line with terminology used in the Older Persons Act, and to “care” in Mexico because its legislation only refers to “care,” not “support.” 

I. Older Persons in South Africa

Question 1. Older Persons’ Right to Live Independently and Within the Community

International and Regional Human Rights Law

International human rights standards guarantee all older persons the right to live independently within the community, but this right is fragmented across different international human rights sources. These sources include the rights to an adequate standard of living and to adequate housing under the International Covenant on Economic, Social and Cultural Rights (ICESCR), which South Africa ratified in 2015, [4] and the right of older persons with disabilities to live independently in the community under the Convention on the Rights of Persons with Disabilities (CRPD), which South Africa ratified in 2017.[5]

The African Charter on Human and Peoples’ Rights, which South Africa ratified in 1996, provides that older persons have the right to “special measures of protection in keeping with their physical or moral needs.”[6] Similarly, the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa (the Maputo Protocol), which South Africa ratified in 2004, guarantees “special protection” to older women, including in relation to their “physical, economic and social needs.”[7]

Older Persons’ Right to Care and Support Under South African Law

Partly to address apartheid’s legacy of racial inequalities in access to care and support, the post-apartheid government adopted the 2004 Social Assistance Act, which provides for the Older Persons Grant, a means-tested non-contributory social security entitlement for people aged 60 and over, and the Grant-in-Aid, for those requiring full-time care and support at home. Denied access to a decent education or decent work for at least half their lives under apartheid and therefore unable to save for older age, 87 percent of black African, 81 percent of coloured, and 58 percent of Indian/Asian older persons received means-tested social security entitlements in 2020, compared to only 30 percent of white older persons.[8]

The post-apartheid government also adopted the 2006 Older Persons Act, which enshrines the right of all older persons to “live in an environment catering for his or her changing capacities”[9] and to “benefit from family and community care and protection in accordance with society’s system of cultural values.”[10] It also aims to “shift the emphasis from institutional care to community-based care”[11] to help address apartheid’s legacy of emphasizing residential facilities (institutions) as providers of care and support for older persons.

The Older Persons Act provides for a range of community-based care and support services for Older Persons Grant recipients, including economic empowerment, recreational, and intergenerational activities; informational, educational, and counseling services, including on “Alzheimer’s, dementia and basic emergency care”; spiritual, cultural, medical, civic, and social services; nutritious meals; skills-building for livelihoods; professional care and rehabilitation to ensure independent living; and integrated community care.[12]

The act also provides for home-based care and support for Older Persons Grant recipients identified as “frail,” meaning they require 24-hour support.[13] This care and support is “a comprehensive range of integrated services,” professional or lay, that include hygiene and physical care; rehabilitation programs to support mobility; respite care; informational, educational, and counseling services on aging to family and community members; and free health care.[14]

Question 2. Concrete Policy or Programmatic Measures in South Africa

South Africa created measures to ensure the rights of older persons, including the Social Assistance Act, which provides for the Older Persons Grant; the Grant-in-Aid; and the Older Persons Act.

Provincial Departments of Social Development are responsible for delivering community- and home-based care and support services under the Older Persons Act in their province. Provincial governments set the budget and priorities for social development, including for older persons, and their treasuries allocate the budget for their Department of Social Development.[15] Provincial departments use part of this budget to subsidize non-profit organizations to fulfill the government’s duties under the Older Persons Act.

National regulations on implementing the Older Persons Act specify three tiers of service centers, delivering from a basic to a more comprehensive range of services.[16]

Question 3. Main Challenges in South Africa

Despite existing measures, nearly 30 years after the end of apartheid, hundreds of thousands of older persons still cannot access the care and support services they are entitled to.[17]

Human Rights Watch identified six key factors contributing to the unavailability of services, despite existing policy and programmatic measures:

1. Government Targets Not Based on Scale of Need

The national Department of Social Development, which is responsible for care and support services for older persons, does not have data on how many require services. Concerningly, it sets targets based on what it can afford, rather than on what older persons need. Despite half of older persons having disabilities[18] and more than half having chronic illnesses,[19] in 2021, only 3 percent of the then-3.7 million Older Persons Grant recipients had access to care and support services.[20]

2. Disparities in Provincial Plans to Increase Access to Services

While some provincial governments have acknowledged the need to increase older persons’ access to services, provincial plans are inconsistent; some have even decreased relevant budgets. Those with planned increases would only cover a small proportion of older persons believed to be entitled to services.

For example, between 2020 and 2023, the Western Cape’s budget for these services decreased by 8 percent[21] and Gauteng’s decreased by 7 percent.[22] In contrast, the Eastern Cape’s budget rose by 16 percent,[23] but over those three years, only 392 additional older persons received services.[24]

3. Insufficient Funding to Non-Profit Organizations that Deliver Basic Services

The government contracts with, and pays a subsidy to, non-profit organizations to provide basic services under the Older Persons Act, as described in the response to Question 1. Service center managers in Eastern Cape, Western Cape, and Gauteng provinces said this subsidy only covered between 40 and 70 percent of their costs.[25]

4. Overly Prescriptive Rules on Non-Profit Organizations’ Service Provision

The government’s overly prescriptive requirements regarding how the subsidy is spent further limits the types of community-based care and support that non-profits can provide. For example, the Eastern Cape Department of Social Development prescribed how the R250 (US$13) per person per month subsidy should be spent for FY23: 42 percent on food, 40 on administration, 13 on sports equipment and clothing, and 5 on personal health care.[26]These allocations do not reflect the range of services envisaged under the Older Persons Act,[27] the actual requirements of those being served by centers, or staff salaries.

5. Over-Reliance on Family Members

In the absence of community-based services, the Older Persons Act effectively shifts the responsibility to family members. However, an over-reliance on family support excludes older persons without families or whose relatives are unable, or choose not, to provide support at home.

The lack of care and support services for older persons also affects family members, often younger women.[28] When an older person requires support, family members may have to take responsibility for other relatives the older person can no longer support.

In March 2022, the Minister for Social Development said 3,000 more social workers were needed to implement the Older Persons Act.[29] According to her, the lack of social workers is due to budget constraints.[30]

6. Inadequate Grant-in-Aid

Those eligible for the Older Persons Grant and who require support with their day-to-day activities are also eligible for the Grant-in-Aid, a monthly social grant to pay someone for full-time support at home.[31] Unfortunately, few older persons interviewed by Human Rights Watch were aware of it.

And it is a paltry amount: in April 2023, the grant was R500 ($27).[32] Based on the 2023 national minimum wage of R25.42 per hour ($1.32), R500 provides only 20 hours, less than one day of full-time care and support per month.[33] Privately provided home-based care and support services exist, but are not affordable for all, exacerbating already existing inequalities.[34]

Global Recommendations Regarding Older Persons’ Right to Live Independently and Within the Community

Human Rights Watch requests OHCHR to recommend that states:

• Guarantee in law older persons’ right to community- and home-based support services.
• Establish a system to determine the number of older persons who require community- and home-based support services.
• Allocate sufficient funds to the delivery of community- and home-based support services.
• Ensure sufficient social workers, support providers, and other necessary personnel are adequately trained and employed to deliver quality and appropriate community- and home-based support services to older persons who require them.
• Review and assess whether social security entitlements are sufficient to guarantee older persons the resources necessary to access adequate support to live independently and within the community and increase the amounts as expeditiously as possible to cover the full costs of such care and support.
• Provide accurate information to older persons and support providers about available community- and home-based support services and social security entitlements.

To ensure older persons’ right to live independently and within the community is an independent right, Human Rights Watch requests OHCHR to recommend that UN member states establish a working group to:

• Draft a new UN convention on the rights of older persons that:
  • Consolidates fragmented international human rights standards into one provision on the right to live independently and within the community.
  • Provides clear and specific guidance about states’ obligations toward older persons and older persons’ rights.
  • Establish a committee to undertake systematic monitoring and reporting on this right and others under the new treaty.

II. Persons with Disabilities in Mexico

Question 1. Persons with Disabilities’ Right to Independent Living and Inclusion

International Law

Support and care systems, comprising disability-inclusive policies and services, are essential for persons with disabilities to fully and effectively participate in society, with choices equal to others, and to live independently in the community, per the Convention on the Rights of Persons with Disabilities.

As noted above the OHCHR has pointed out, with the exception of phrases such as health care or respite care, the term “care,” as used regarding persons with disabilities, refers to children. When it comes to adults with disabilities the correct term should be “support.”[35] Organizations of persons with disabilities and human rights organizations, including Human Rights Watch, have made clear that support can take various forms.[36] For example, support can be provided by other people, animals, or through other types of technical assistance. Regardless of form, support needs to respect the general principles of international human rights law on disability rights: that is, it should respect the inherent individual autonomy and dignity of persons with disabilities.[37]

Human Rights Watch uses “autonomy” in this context to refer to the right of every person to control their environment and make decisions about it.[38] As such, Human Rights Watch would stress that autonomy in the context of disability rights is not primarily a functional concept and should not be characterized mainly as a person’s ability to perform activities by themselves, such as bathing, transporting, or making choices.

Because Mexico’s legislation only refers to “care,” not “support,” the following discussion will use “care” even in reference to adults with disabilities. However, Mexico’s use of “care” instead of “support” for adults with disabilities raises significant concerns.

Right to Care Under Mexican Law

The right to care began to be recognized in Mexico with the creation of the Political Constitution of Mexico City in 2017. There has been significant momentum from the federal Congress to legislate on the right to care; however, for budgetary reasons, the legislation could not be fully approved.[39] There is also a bill in the Mexican Senate to create a National Care System.[40] Some states have moved toward recognizing care; for example, the state of Jalisco passed legislation on care in 2024.[41]

Question 2. Concrete Policy or Programmatic Measures

In Mexico, there are no national or specific state-level policies guaranteeing the right to independent living for persons with disabilities.[42]

The only relevant policy is the disability pension administered by the Ministry of Welfare, occasionally in collaboration with counterpart authorities at the state level.[43] The disability pension provided by the federal government in coordination with the states amounts to 1,550 pesos (equivalent to US$92) per month.[44] This is less than the average living wage per person in Mexico which amounts to 26,058 pesos (US $1583) per month.[45] The average monthly salary of employed individuals in Mexico in 2023 was 5,750 pesos (US$338).[46]

This amount is thus insufficient to cover even the basic cost of living for adults with disabilities, particularly those with more intensive support needs or those residing in areas with higher costs of living, such as Mexico City, Guadalajara, and Monterrey.

The disability pension only covers 1,485,451[47] of the 20,838,108 persons with disabilities in Mexico.[48] The Mexican government is progressively increasing the number of people benefiting from the disability pension, but progress has been slow. So far, there is no clear benchmark regarding when all people with disabilities living in the country will be covered.

Question 3. Main Challenges

Challenges in Access to Essential Services Necessary for Independent Living 

Limitations in employment opportunities, affordable and accessible housing,[49] accessible transportation,[50] and access to services such as personal assistants significantly hinder the ability of persons with disabilities to live independently.[51] Few state and national programs provide these key services, develop necessary services, or take measures to ensure existing services are accessible. Persons with disabilities also face high levels of marginalization.

Private Sphere Violence and Abuse

These challenges, coupled with the insufficiency of the disability pension, result in persons with disabilities becoming highly dependent on their families for economic and other support. In fact, the legislation in some Mexican states like Oaxaca, Jalisco, and Nuevo León considers it a crime for anyone to stop supporting their relatives with disabilities.[52] Such policies deepen the dependency of people with disabilities on their relatives. Furthermore, their dependence on relatives can render them at risk of domestic violence and abuse.

Problematic Discourse and Terminology in Legislation

In Mexico, the persisting discourse situating persons with disabilities within the medical model of disability hinders the creation of disability-inclusive care and support systems. Any care and support policy should be consistent with the CRPD’s general principles, notably respect for the inherent autonomy and dignity of persons with disabilities and their freedom to make their own decisions. However, both the pending federal legislation and the one passed by Jalisco fail to recognize this autonomy by referring to persons with disabilities as “dependent persons,” or persons who cannot perform certain activities by themselves and, in that sense, need to rely on others to perform such activities.

Similarly, according to both the pending federal legislation and the one passed by Jalisco, “dependence” is:

the state, whether permanent or transitory, in which persons find themselves due to degenerative processes associated with age, illness, or disability, and linked to the lack or loss of physical, mental, emotional, intellectual, sensory, or mixed functionality, requiring the attention or supervision of others or significant assistance to perform activities of daily living, or in the case of persons with intellectual disabilities or mental illness, (sic) other supports for the development of their personal autonomy.

This language is not unique to Mexican legislation; the Women’s Commission of the Organization of American States is also recommending it at the Latin American level.[53] In addition, there are precedents in the region, such as in Uruguay, whose 2015 legislation on care uses “dependency” terminology and which organizes its care system based on assessments of a person’s functionality instead of social barriers and the person’s support requirements.[54]

Insufficient Opportunities for Participation of Persons with Disabilities

In Mexico, there are very limited spaces for meaningful participation by organizations of persons with disabilities. So far, the policies for establishing a care and support system in Mexico have not adequately solicited input from organizations representing persons with disabilities, who have largely remained on the sidelines of these processes. This is despite the CRPD obligations on states to conduct such consultations[55] as well as robust case law from the Mexican Supreme Court regarding the necessity of consulting organizations representing persons with disabilities as part of legislative due process.[56] Moreover, considering the potential impact of care and support systems for independent living, Mexico should look to build on models in other countries where organizations representing persons with disabilities are also directly involved in the management and oversight of centers for independent living, including through direct management of support services.[57]

Global Recommendations Regarding the Right to Care and Support for Persons with Disabilities

Human Rights Watch requests OHCHR to:

• Urge States Parties to the Convention on the Rights of Persons with Disabilities (CRPD) to include support for independent living for persons with disabilities and older persons as well as robust systems for their inclusion in the community.
• Emphasize that all public policies to establish the right to care and support for independent living must respect the autonomy of persons with disabilities and older persons, including by using the correct terminology in line with international human rights norms, treating “autonomy” as a normative concept rather than primarily a functional one, and should implement a model that allows those individuals input and oversight over the care and support they receive.
• Emphasize that children with disabilities must be properly consulted regarding care and support policies that may impact them, in accordance with the child’s age and maturity.
• Recommend the creation of a care and support system for independent living and community inclusion in which organizations of persons with disabilities can participate significantly in its design, management, and supervision.
• Urge States Parties to the CRPD to ensure their laws honor children's progressive autonomy by establishing procedures to properly gather and share the opinions of children with disabilities in accessible formats.