Good news that hides a major failure

This week something happened that hadn’t happened for a long time: the political parties have agreed on something. That something is a law to better support and care for people with Amyotrophic Lateral Sclerosis (ALS) using public resources.

This is great news, which has been celebrated with great joy by patients, their families, and those who cared for other people who died from this aggressive neurodegenerative disease with no cure. However, and sharing this joy, I wonder if the fact that there is an ALS law means that the welfare state has failed. We have a universal health system and a dependency law with benefits according to the degree of autonomy. How broken is this system if it has not been enough to support people with ALS and their families?

Well, it is that simple: it takes an average of 324 days to resolve a dependency benefit from the time it is requested. 111 people died a day last year while waiting. Furthermore, the maximum time for home help covered by the law is two and a half hours a day for the severely dependent. Is that feasible for someone who cannot get out of bed, shower or eat independently?

The ELA law is still only a piece of paper signed by parliamentary groups. When it is approved by Congress and the Senate, a process that is expected to be completed in October, it will recognize new rights.

Here are all the changes explained one by one, although the text still has to go through a period of amendments and it is possible that there will be some modifications.

We still don’t know how much investment all this will require. Neither do the associations. “We have calculated that implementing the law would cost 200 million euros annually, but there is no commitment with either the groups or the Government in the economic aspect, it is a point that is not up to us,” Fernando Martín, president of conELA, told me. His father died in 2019 as a result of the disease. The interview is interesting because he tells us some little-known things about the negotiations in Congress, such as how the deputies reacted after Juan Carlos Unzué’s argument in February. From that moment on, the conversations ran like Formula 1.

In this link The entire conversation is here, it’s worth it.

While you were doing other things…

Goodbye to low-emission zones

It’s like Groundhog Day. First the PP was the victim of its own appeal when they were in opposition. And once they had tried to fix it, swallowing the promises that raised José Luis Martínez-Almeida to the mayoralty of Madrid, Vox arrived and once again knocked down the low-emission zones. Santiago Abascal’s party, a climate crisis denier, celebrated it with a simple but insane video that only says one thing: Do you like driving?

In the legal appeals to end these measures, which have been proven to reduce pollution and therefore premature deaths from exposure to smoke emitted by cars, a tricky argument repeatedly appears: that lower incomes cannot join the ecological transition for economic reasons. In other words, they cannot change their car from 2000 that today cannot enter the city because it pollutes too much. However, these groups with less economic capacity are those who suffer the most from pollution and those who use the private car the least, reserved for higher incomes. My colleague Raúl Rejón explains the paradox very well. in this article.

That’s it for today. Happy end of summer (yes, that’s it) and happy beginning of autumn. See you next week.

Sofia