The Senate Plenary unanimously approved this Wednesday the bill to improve the quality of life of people with Amyotrophic Lateral Sclerosis and other diseases or processes of high complexity and irreversible course.
This law has its origins in three texts prepared by the PP, Junts, PSOE and Sumar based on a proposal from the group of people affected by ALS, some of whose representatives followed the debate live from the guest gallery, as they already did. in the Congress of Deputies.
In statements to the media prior to attending the Plenary Session of the Upper House, the Minister of Social Rights, Consumption and Agenda 2030, Pablo Bustinduy, expressed his “enormous satisfaction” at the fact that “this process culminates today”, which, He admitted, “it has been so difficult, so long” and that, in his opinion, “it represents an enormous success for Spanish society and organized civil society.”
In this sense, he valued that “they have managed to make this law a reality and that it is so with a very broad political and social consensus”, convinced that it is “an example for Spanish politics of what it should look like.”
Likewise, he expressed his gratitude “to the people with ALS, their families and the organizations that represent them and that have achieved this great success, this great victory for the country as a whole.”
“It will make people’s lives easier”
During the debate, the socialist senator Juan Ramón Amores, who suffers from ALS and who was greeted and dismissed with prolonged applause, confessed that he felt “tremendously fortunate to be able to give a voice to those who can no longer speak” and to explain the “benefits.” of a law, which, despite the fact that it “arrives late”, will “make people’s lives easier.”
After pointing out that the regulations “are a victory for civil society, for the sick and for the associations” that represent them, Amores also addressed those who “today” are going to be diagnosed, to send them the clear message that this diagnosis ” It’s going to be just as hard,” but the “care” that this law “guarantees” “will allow you to continue fulfilling dreams,” which is why he reminded the minister of the urgency of “putting it into action.”
For their part, the spokespersons for all the parliamentary groups agreed that this Wednesday is “a great day”, in which “very important progress” has been achieved, although they stated that it is also “a good day to ask for forgiveness.” for not having arrived sooner.
In parallel, they warned of the need to “be vigilant” so that the standard has “sufficient” funding and always “hand in hand” with the organizations, whose “task” they see as “essential.”
The law seeks to “guarantee the best quality of life”
As stated in the explanatory memorandum, the new law seeks to “guarantee the best quality of life” for the affected people, for which the administrative procedures for the recognition of degrees of disability and dependency will be streamlined and a ” “better integrated care” between social and health care systems for those affected with severe neurological processes that meet certain criteria.
Among them, having an irreversible or progressive condition; not having experienced a significant response to treatment; require complex social and health care, focused on the home environment and that will have a high impact on the immediate environment of the affected people and the rapid progression in some of these processes. For this reason, the new standard seeks to “accelerate” the administrative processes of assessment and recognition of the degree of disability or dependency.
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