Over the past year, the ALS law was implemented without any assistance reaching patients, and the government did not propose creating a system for autonomous communities, although sick people still do not receive benefits to this day. … Extreme dependency (III plus) was later approved with assistance of up to 10,000 euros to those affected. And now local governments are in turmoil, scrambling to modify their benefit systems to ensure aid reaches families, something that could have been predicted if the government had worked with local governments on the plan. This is the condemnation of Oscar Álvarez, head of the Madrid Regional Community Aged Care and Dependency Relations Department, who speaks of the “inaccuracies” of the Ministry of Social Rights’ project towards the practical implementation of the norms.
“All autonomous communities have a common concern and we conveyed it to the Ministry at the last territorial council. We express our displeasure with the way the Royal Decree was handled and what we learned from the City Council Education Committee about our powers and obligations,” Alvarez lamented in a conversation with the ABC.
He asserted that although implementation of the ELA law was discussed several times during meetings between the ministry and autonomous communities throughout the year, “no work has been done” on the Royal Decree Law, which was later approved by the government. Had they done so, he argues, municipalities could have begun managing changes to their dependency systems and accelerated aid.
Minister of Social Rights Pablo Bastinduy announced on October 21 at a press conference after the Council of Ministers that the ELA Act would be financed through the approval of a Royal Decree Law, which came into force two days later. According to him, this will be achieved by creating a grade III plus extreme dependence, in which patients with amyotrophic lateral sclerosis and other complex diseases with an irreversible course will be paid up to 10,000 euros a month, half of which will be covered by the municipality.
“The maintenance system is a system that involves a lot of procedures, and this Royal Decree law only modifies the minimum part of the maintenance law itself,” criticized Oscar Álvarez, who regrets that the executive branch has left the message that sick people will receive 10,000 euros a month, without taking into account everything that the amendment entails. He does not question the method chosen by the government, but he does question that it was developed unilaterally. This situation, he argues, has led to some “uncertainties”, including, among other things, that the standards are not clear whether a patient’s financial situation must be taken into account when receiving assistance, similar to other benefits provided by the community to dependents.
start from zero
Therefore, the Director General of Elderly Care and Dependency of the Community of Madrid states that home support requires a significant development of procedures for assessing and recognizing dependency status, a new benefit calculation and justification system, or the development of information systems taking into account new degrees. And all of this requires time that people with ALS and other irreversible diseases don’t have, he points out. “All of this would have been fully developed if the government had worked with autonomous communities from 2024 instead of starting from scratch a year later,” he says.
The Ministry of Pablo Bastinduy responded to the media, which acted “as quickly as possible” to “strictly comply with all responsibilities attributed to the media” under the ELA law, in order to “speed up the process as much as possible so that the benefits reach users and their families as soon as possible.” The social rights group notified autonomous communities of the adopted measures on October 23, two days after approving the regulations, and claims that it has maintained “direct and permanent communication” with affected people and their families throughout this year. “All the necessary elements are now in place to continue operations so that each agency can carry out its responsibilities accordingly,” he defended.
But Álvarez argues that several questions still await resolution, including how many of the government’s announced 500 million people will receive full benefits for ALS patients, how much time and money will be allocated to the dependent care system, what minimum amounts will be set for dependents in grade III and above, and how the training of professionals to care for these complex patients will be ensured. Without defining all these criteria, he predicts, the system will not be uniform across Spain. He accused the state of throwing the ball at autonomous communities, but vowed that the region would do everything in its power to ensure that relief supplies reach homes as quickly as possible.
Self-pay amount
Social rights groups and autonomous bodies are scheduled to meet tomorrow to discuss the issue. Patients are particularly concerned about the possibility of co-pays for benefits. “The ALS Act does not mention co-payments, but the Dependency Act does. We are concerned that if someone who requires 24-hour care has to pay a co-payment, no matter how small, they already have to pay a large co-payment because the time is so long,” explains Cristian Lago, a member of FundAME (Spinal Muscular Atrophy Foundation). Also of concern, Lago said, are the criteria that define access to the standard for patients with other medical conditions, which would require them to have a tracheostomy or require a ventilator to benefit. Social rights ensure that not only people in this situation receive help, but that the progression of the disease is also attended to.
About The Author
