During the year the ALS Law went into effect without aid reaching patients — to this day patients still cannot access benefits — the government did not propose to autonomous communities to establish … Severe degree of dependency (III plus) which was subsequently approved accompanied by assistance of up to 10,000 euros for those affected. Now, independent districts are mired in chaos, forced to scramble to adjust their benefits systems so that help reaches homes, something they might have expected had the executive branch worked out its plans with them. This was denounced by Oscar Alvarez, Director General of Elderly Care and Dependence of the Community of Madrid, who spoke of the “lack of precision” in the Ministry of Social Rights’ project of the real application of the standard.
“There is a common interest in all autonomous regions, which we conveyed to the Ministry in the last Regional Council. We express our dissatisfaction with the way the royal decree was handled and because we learned from the Bank of England what powers and obligations we have,” Alvarez lamented in a conversation with ABC.
He stresses that throughout this year, although the implementation of the Autonomous Communities Law was discussed in meetings between the Ministry and the Autonomous Communities on several occasions, “no work was done” on the Royal Decree-Law subsequently approved by the government. If they had done so, he asserts, autonomous regions would have been able to start managing adjustments in their dependency systems to accelerate aid now.
On October 21, in the press conference after the Cabinet meeting, the Minister of Social Rights, Pablo Postenduy, announced the funding of the Legal Aid Law through the approval of a royal decree-law that entered into force two days later. This will be done by creating a third plus degree of severe dependency, he said, and patients with amyotrophic lateral sclerosis and other complex diseases with an irreversible course will receive up to 10,000 euros per month, half of which will be borne by independent bodies, for their care.
“The maintenance system is a system that involves a lot of procedures and this royal decree only modifies some of the minimum of the maintenance law itself,” criticizes Óscar Álvarez, who denounces the fact that the executive leaves the message that patients will receive 10,000 euros per month without taking into account everything that the amendment entails. He does not question the formula chosen by the government, but he questions the unilateralism with which it was developed. He emphasizes that this situation leads to several “contradictions”, including, among others, that the rule does not clarify whether the economic situation of patients must be taken into account when receiving assistance, as is the case with the rest of the benefits that societies provide to dependents.
Start from scratch
Thus, says the Director General of Elderly and Dependent Care of the Community of Madrid, for assistance to reach homes, there is a need for a significant development in procedures for assessing and recognizing dependency, systems of calculation and justification for new benefits or developments in information systems that consider the new degree. He points out that all this requires time that people with amyotrophic lateral sclerosis and other irreversible diseases do not have. “All this could have been fully developed if the government had worked with the autonomous regions since 2024 and not started from scratch a year later,” he points out.
For its part, the Ministry of Pablo Postenduy responds to the media that moved “as quickly as possible” in order to “strictly comply with all the responsibilities assigned to it” under the ELA, in order to “accelerate the process as much as possible so that the benefits reach the users and their families as soon as possible.” The Social Rights Organization insists that it informed the autonomous regions on October 23 – two days after the rule was approved – of the measures taken, and that throughout this year it has maintained “direct and permanent contact” with those affected and their families. He stressed that “at the present time, all the necessary elements are available to continue work so that each institution can exercise its corresponding responsibilities.”
But Álvarez insists that there are many issues awaiting resolution, such as how much of the 500 million announced by the government will go entirely to ALS patients, for how long and how much will be allocated to the dependency system, what the minimum amount will be set for tertiary dependents or how the training of professionals who carry out such complex care for these patients will be ensured. It is expected that without defining all these parameters, the system will not be homogeneous throughout Spain. “The state is throwing the ball to the autonomous regions,” although he stressed that in the region they will do everything in their power to ensure that aid reaches homes as soon as possible: “We will do our best to ensure that aid arrives in the shortest possible time.”
He participates in the payment
Social rights and self-government will meet tomorrow to discuss this issue. Patients are particularly concerned about the possibility of co-payments in benefits. “In the ALS law it does not talk about co-payment but it speaks in dependency law, and we are concerned that if a person who needs 24-hour care has to face a co-payment, no matter how little it is, because there are very long hours, it is already too much,” explains Christian Lago, member of FundAME (Spinal Muscular Atrophy Foundation). Lago says what is also concerning is the criteria that will determine access to the standard for those affected by other diseases, and that the patient will be required to have a tracheostomy or require mechanical ventilation to be able to receive the benefits. Social rights ensure that people in these situations will not only receive help, but that the development of the disease will be taken care of.
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