Nilda Villacres, an expert in public health in Ecuador, is also a single mother of a 30-year-old son who was born with cerebral palsy. Despite the difficulties, she feels fortunate to work in a profession that helps her cover the costs of the people who accompany her son during a good part of the working day.
“I take care of him alone during nights, weekends, and holidays when the girls are not there. I know many moms who left their studies to take care full-time of their son or daughter with a disability, and today they are not happy. As much as you love your son, you also have needs,” Nilda explained.
On this International Day of Persons with Disabilities, I wanted to talk about those care assistants who, usually informally, are an essential part of guaranteeing the needs and rights of people with disabilities every day, but who are often not considered in public policy discussions about disability in our region.
Informal personal assistance involves caring for people with disabilities, the chronically ill, or the elderly. Generally, this role is fulfilled by relatives, neighbors, or close friends who for the most part are not remunerated or affiliated with social insurance. The United Nations Convention on the Rights of Persons with Disabilities establishes that they have rights, including equal access to the same opportunities as other people, and can freely exercise those rights. However, many of them require daily personal assistance that is unaffordable for many governments. In the long run, that assistance therefore ends up falling on their families, mainly women.
Informal services represent the main source of personal assistance to persons who are dependent in countries around the world. In Europe, for example, it is estimated that informal assistants provide 80 percent of all long-term personal assistance services and that between 10 and 25 percent of the European population works as an informal assistant to a person close to them who requires support because of age, disability, or illness. There are little data for medium- or low-income countries. In Ecuador, a country that has advanced more in public policies for people with disabilities than other countries in Latin America, the estimated figure would be even higher because “formal” services are very scarce.
Assistance to Assistants
Long-term support to a child or a family member with a disability has significant effects on the lives of those caring for them, both economically and in terms of health.
On the one hand, it may involve leaving a job or not even entering the labor market so as to be able to perform the support work at home. This reduces the income of these households that in many cases already have the burden of additional costs for medicines, special foods, diapers, or hygiene products, as the case requires.
In addition, stress, fatigue, isolation, and the impossibility of living a life of their own can overburden caregivers and in the extreme even lead to burnout syndrome. This syndrome affects their physical, mental, and emotional health, which ends up deteriorating the quality of the service provided and implies economic and social costs.
Can and Should the State Regulate and Improve Informal Services?
It is important that governments increase efforts to provide adequate personal and medical assistance services that are professional, formal, and remunerated, and that facilitate the inclusion of people with disabilities in all areas. On the other hand, while the offer of formal services does not cover existing and growing demand, it is equally important for the state to recognize and improve informal services offered by family members.
One measure would be to offer monthly payments to informal assistants (“cash-for-care”). In Ecuador, the Ministry of Economic and Social Inclusion (MIES, its acronym in Spanish) provides monthly cash assistance of US$240 to informal assistants (9 out of 10 are women) based on the degree of disability of the people they care for. This program, known, as Bono Joaquín Gallegos Lara, is intended only for families living in poverty and benefited more than 24,000 households in 2018.
Another option would be to formalize these services, allowing for the affiliation of informal assistants with social security, perhaps with subsidized copayments, thus reducing the vulnerability of assistants to health risks and the lack of future pensions. A third element would be to professionalize informal assistants through training and competency certification. This measure could improve the quality of the service they offer and, in addition, facilitate their future insertion into the labor market as professional assistants.
Finally, it is necessary to establish and/or update a national registry of informal assistants to provide more information to the state on the situation of persons with disabilities, their families, and their needs. This would allow for designing better public policies in the field of disability, as well as encouraging the creation of community support networks among families and assistants in the same situation so that they could exchange experiences and share their concerns. Nilda, for example, would love to be part of a community support network because she believes that “there is no accompaniment or guidance, let alone affordable professional services.”
These measures do not solve the problem as a whole, but they are in line with the growing social demand to increase the economic protection of people with disabilities and the remuneration of informal services. The state is responsible for guaranteeing improvements in the coverage and quality of professional and formal personal assistance services. But it is an illusion to think that these assistance systems can work without informal services. The accelerated aging of the population will increase the need to articulate reforms that improve the sustainability and quality of informal personal assistance services. Registering, formalizing, and professionalizing these services could affect the welfare of people with disabilities and those who assist them.
Have you had experience as a personal assistant for a loved one with a disability? Share your experience in the comments section or at @BIDgente on Twitter.