This Tuesday, the Council of Ministers approved a Royal Decree-Law to provide the ELA law with 500 million euros and strengthen the System for Autonomy and Dependency Care (SAAD). The regulation includes aid of up to 10,000 euros per month for patients with ALS and other serious neurological diseases in an advanced stage, which will be financed in equal parts by the Government and the autonomous communities. Its objective is to guarantee specialized attention 24 hours a day.
Although the ELA law came into force a year ago, it needed regulatory development to truly benefit and reach those affected, thus lacking all this time a real and effective practical application. In fact, several associations had reported the death of hundreds of patients who had not been able to benefit from the aforementioned law. The Spanish Association of Amyotrophic Lateral Sclerosis (adELA) was one of them, which stressed in June that “without that real commitment” that funding entails, the law would run the risk of “remaining a dead letter.”
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Now, its budget allocation and operational criteria have been unlocked so that patients do not have to continue assuming the very high costs of care. “This reflects a year of intense work, not only on the part of this ministry, but also of different ministries within the Government, also of the autonomous communities and civil society, to comply with the deployment plan of the ELA law, which we made almost a year ago, streamline access and improve the design of benefits to address these especially complex cases,” the Minister of Social Rights, Pablo Bustinduy, said today in this regard.
Creation of Grade III+ extreme dependency
The approved Royal Decree-Law includes the creation of Grade III+ extreme dependency for access to specialized services, which is “the novelty that will have the greatest impact in the long term,” according to Bustinduy.
This degree recognizes a subjective right to intensive care for people who suffer from processes characterized by the absence of a specific curative treatment, short survival time from the moment of diagnosis, rapid evolution towards a high level of disability and the need to integrate complex health and social care.
Under this framework, the Government has established the aforementioned benefit of up to 9,868.60 euros per month for each patient, in order to guarantee continued assistance to their needs. This care will include issues such as respiratory and swallowing support, which are essential supports without which there would be a risk of death.
The amount of this aid has been calculated taking into account that this care requires an estimated ratio of five professionals per beneficiary and will be financed 50% by the central government (4,930 euros) and 50% by the government of the autonomous community in which the patient resides. Annually, for each patient a salary investment of 118,423 euros in 14 payments is guaranteed.
When will it come into force
The Royal Decree will be published tomorrow, Wednesday, in the Official State Gazette (BOE) but must be validated by the Congress of Deputies within a period of 30 days, according to sources from the Ministry of Social Rights consulted by Europa Press. Thus, until the norm is validated in Congress, it cannot come into force.