The right to care and support is fundamental. But in Latin America, access to care often depends on unrecognized and unpaid work, mostly performed by women.
Fortunately, countries in the region are taking important steps to improve the situation for care providers, including by creating formal systems that help shift care responsibilities away from unpaid, unrecognized care work. In 2015, Uruguay created the first care system in Latin America, focused on meeting the needs of children, people with disabilities, and older peoples. This system, although a landmark achievement, nevertheless is not completely adequate, social activists and public officials have said.
Mexico is trying to follow suit but should not replicate the mistakes in Uruguay's system and should properly address the rights of both those providing care and support and those who require it. On September 18, Senator Malú Micher co-presented a bill to create a Mexican National Care System, but it references people in a “situation of dependency,” drawing on problematic language from Uruguay and the Organization of American States, among other elements inconsistent with human rights.
As Human Rights Watch spells out in its report on Uruguay’s care system, “Dependency is a problematic concept when it refers to people with disabilities or older people, as it implies an individual deficiency without considering the social environment. It also casts a negative image of these individuals, portraying them as a burden.” Consequently, Mexico’s care system and policies should not be framed around a person’s level of “dependency.”
The proposed bill in Mexico disregards the autonomy and rights of people with disabilities and older people by creating long term residences - that is, institutions, which violate their right to choose how and with whom to live. Institutionalization or forced reliance on family support often results in abuse, violence, and neglect, representing a form of disability-based discrimination.
Uruguay’s care system provides eligible people with disabilities with up to 80 hours of monthly support from personal assistants, which is a start to supporting independent living but wholly insufficient. The program also has other serious gaps. It excludes people between the ages of 29 and 79 and is inadequately tailored to support individuals with intellectual disabilities, sensory disabilities (such as blindness or deafness), or high-support needs (such as some people with autism). States should establish care and support systems that progressively provide universal coverage, to the maximum of the state’s available resources, based on requirements, and not restricted by age or problematic assessments of “dependency.”
To respect people with disabilities’ and older peoples’ rights and dignity, care and support systems should actively involve organizations representing people with disabilities and older people. This will help achieve a rights-based approach to designing and carrying out relevant policies. While such organizations were not adequately involved in developing and executing Uruguay’s care system, Mexico has the opportunity to do better.
One positive model Mexico could use is the Centers for independent living in the United States and other countries, run by people with disabilities. These programs support community living and independence by promoting inclusion, equal opportunities, and self-determination. They provide resources necessary for active participation in the community including referrals, wheelchair repairs, personal assistants, and accessible housing assistance. Mexico should establish such centers and ensure their long-term economic sustainability.
Right now, Mexico has the opportunity to create a truly rights-respecting, inclusive, and participatory care and support system that promotes independence. For such a system to result, the Senate should work closely with organizations of people with disabilities and older people with the goal of reviewing and eliminating problematic provisions in the bill.
