Another Vision From the Coronavirus Health Crisis in Spain: The Perspective From the Plena inclusión Developmental Disabilities Associative Movement

To the Editor:

Plena inclusión (“full inclusion”) is Spain's leading nongovernmental organization on intellectual disability and other developmental disabilities (DDs). It comprises nearly 900 family-based nonprofit organizations throughout the country. Plena inclusión offers lifelong support to 140,000 people with DD (intellectual disability, autism spectrum disorder, and cerebral palsy) and their families.

We read with great interest the article by Arango (1) and would like to point out several statements that we consider to be incorrect. In particular, we highlight those pointed out in the paragraph, “One of the many mistakes the Spanish government made was that people with intellectual disabilities or autism were allowed to go out into the streets. This was done with the best of intentions (to minimize behavioral problems in this vulnerable population). However, this is precisely a population that must not become infected because 1) managing them in a hospital is especially difficult for both them and the system, especially now; 2) a relative will also be infected, as they need someone with them; and 3) sadly enough, they are not eligible for ICU care.”

The author claims that the government has allowed people with intellectual disabilities or autism to go out on the streets. This is not exactly the case.

People with disabilities, as Spanish citizens, are obliged to respect the measures taken by the government to manage the health crisis created by COVID-19. However, among people with disabilities, some do not understand why they should be confined to their homes or are not able to adapt to confinement. This generates situations of stress that can trigger behaviors that, because of their intensity, frequency, or duration, pose a risk to people’s own health and safety or that of those living with them.

Therefore, for the health and safety of both the individuals and those who live with them, the government authorized that this minority group of people could go out on the streets or drive around for short periods of time, owing to the therapeutic effect of these outings (2). These therapeutic outings may be carried out only if the necessary measures are taken to avoid contagion.

It should also be clarified that this authorization is not only for people with intellectual disabilities or autism, but also extends to other groups, such as people with severe mental disorders. The government, in the publication of its regulations, mentions people with autism and disruptive behavior as examples of the people benefiting from this exception but does not state that the rule applies only to them.

The author also claims that this authorization is a government mistake; however, he does not provide any evidence that these departures have led to an increase in contagion for people with DD who have benefited from it, for their companions, or for the general population.

Plena inclusión is conducting a survey among family members and professionals who have accompanied people with DD in their therapeutic outings. To date, 832 surveys have been collected (3), and we will soon be able to provide data on the usefulness of this measure based on scientific evidence.

The author gives three reasons why people with intellectual disabilities or autism must not get infected. We consider the third reason given to be particularly dangerous: according to the author, this group is not eligible for intensive care unit (ICU) care.

This statement is categorically false. In the only reference provided by Arango, Emanuel et al. (4) detail “six specific recommendations for allocating medical resources in the Covid-19 pandemic: maximize benefits; prioritize health workers; do not allocate on a first-come, first-served basis; be responsive to evidence; recognize research participation; and apply the same principles to all Covid-19 and non–Covid-19 patients.” None of these recommendations refer to the fact that people with DD are not eligible for ICU treatment or any other type of treatment related to the COVID-19.

On the other hand, and focusing on the case of Spain, the Bioethics Working Group of the Spanish Society of Intensive and Critical Care Medicine and Coronary Units (SEMICYUC), with the endorsement of the Spanish Society of Internal Medicine, prepared in February 2020 a document (5) that establishes a series of ethical recommendations for decision making in the exceptional situation of the COVID-19 pandemic crisis in ICUs. None of these recommendations exclude people with DD from being treated in ICU care.

SEMICYUC also clarifies that the medical criteria in each patient take precedence over its general recommendations, as long as it is reasoned, argued, and agreed upon in the daily clinical session or by the Ethics Committee.

Each case must be studied individually, regardless of whether it involves people with or without disabilities or autism. This principle and the SEMICYUC report have been endorsed by the Spanish Bioethics Committee (6).

To state (as Arango does) that people with intellectual disabilities or autism are not eligible for ICU care, in addition to being inaccurate, may be considered unethical and discriminatory, as it encourages medical decisions to be made based not on clinical criteria, but rather on disability.

We are concerned that “lessons learned from the coronavirus health crisis in Madrid” (1) may be understood to mean that people with disabilities or autism should be discriminated against and not receive the medical care they require. This is totally unacceptable and we, therefore, want to express our most profound disagreement for the record.