Three proposals for the law in two months to take care of amyotrophic lateral sclerosis (ALS) patients once and for all. Three proposals (the PP, Junts and the PSOE) that are added to the one that was approved in the last legislative session, delayed 48 times, until finally vacating due to the electoral call.
Three proposals endorsed by Congress that feed the hope of some patients and, at the same time, their despair, since, as most of the parties acknowledged, “they don’t have time left”. As the representative of Sumar Rafael Cofiño said, “the political gears work with an exaggerated slowness”, and what is expected of Congress is to push forward as soon as possible a law, even if it is imperfect (his words were applauded ).
It is time to act, reiterated all the parties. But the reality is that there are three texts and now we will have to work to unify them, which will require time, as many of the deputies highlighted. Because despite the fact that the first two texts of the PP and Junts are very similar, the bill that was approved yesterday goes beyond quick and effective care for ALS patients. Socialists have proposed that the care of people affected by neurodegenerative diseases, such as ALS, Alzheimer’s, Parkinson’s and Huntington’s disease. One of the objectives of the regulations is to “rationalize and reduce procedures as much as possible, to ensure that there are no significant gaps between the process of a disease and the response offered to people who have it by the administrations public, from all areas”.
Therefore, the law advocates a simplification of the times and procedures for the accreditation of the disability situation, as well as with regard to reviews of the degree of dependency. Among the novelties of the text, it stands out that for the first time aid is established for people with electrodependence, those who depend on a machine connected to the electricity network to preserve their health.
In addition, coordination between health and social services is improved, and autonomous communities are recognized with the role of establishing the necessary coordination procedures for these people to receive multidisciplinary, continuous and “as individualized as possible” care, in the framework of its own regulations.
