Por María Izquierdo 
Improving the latest protocol signed between the regional government and ELACyL includes the creation of a pool of professionals to assist people with ALS when their family caregivers need to run errands outside, while the Junta will pay half of the Social Security contributions when they have had to stop working and is ahead of the Government to ensure permanent care in the advanced stage of the disease.
July 1, 2025
Castilla y León |
Department of Family and Equal Opportunities
The Junta de Castilla y León will intensify services for people suffering from amyotrophic lateral sclerosis (ALS) and their families through the modification of the latest collaboration protocol signed between the regional government and the ALS Patients Association (ELACyL), with the aim of providing them with all the necessary and appropriate resources to live with the highest quality of life possible in any phase of the disease.
The Community Government will promote a new specialized support service free of charge to replace family members when they need to run errands outside the home; complement continuous care 24 hours a day, 365 days a year, and financially compensate family caregivers who have had to stop working.
The Vice President of the Junta de Castilla y León and Minister of Family and Equal Opportunities, Isabel Blanco, signed the new text today with the president of ELACyL, Rosa María Gómez, and announced a new contribution of 50,000 euros to the entity to face the new services, which adds to the earmarked grant of 250,000 euros, so the amount received by the association increases to 300,000 euros annually. Between 2023 and May 2025, the association has assisted 251 people with funding from the Junta.
As the Vice President stated, this update to the protocol is in response to the need to address this group as the state law approved last October is developed.
Support in detail
Therefore, new measures will be implemented to enhance support for these individuals and their surroundings. Firstly, when family caregivers need to run errands outside the home, a professional will accompany and care for the ALS patient free of charge. To do this, a pool of workers will be set up to attend to the user’s needs based on the family’s requirements. This service can now be requested from the ELACyL Association, which will manage it.
Secondly, the Junta will provide free additional support within ‘INTecum’ for ALS patients with tracheostomies, as established by national law, up to 24 hours every day of the year, providing a personal assistant as needed. Given the lack of regulatory development of this rule, the regional government is ahead of the national government and will provide a basic service for these individuals, which can be requested from today in the same way as requesting intervention in the ‘INTecum’ program.
Lastly, the Junta will financially compensate family members who have stopped working to care for the ALS patient with any recognized level of dependence. These aids will consist of paying an amount equivalent to 50% of their Social Security contributions. While at the national level this contribution is only made for caregivers of dependents classified with level three, the regional government goes further and will also cover the contributions of ALS patients whose level of dependence is one or two. In the coming days, the modification of the Order regulating dependency benefits will be published in the Official Bulletin of Castilla y León to apply for this aid.
In this way, progress continues to be made in ensuring the highest quality of life for these individuals, always within the possibilities provided by a disease like ALS.
Protocol content
In addition to the updates, one key aspect of this protocol is to continue to deepen early intervention by establishing emergency procedures not only when initially assessing the degree of disability and dependence of individuals in this situation but also in the corresponding periodic reviews. This reduces both the entry time into the system and the assessment time. Once inside, they are provided with the benefits they request according to their preferences, level of dependence, and economic capacity.
Another crucial aspect is the ‘ALS Protocol’ within the ‘INTecum’ program to adapt it to the needs of this group. While it is generally necessary to be included in the Palliative Care Plan to receive home support through this initiative, this requirement is not necessary for ALS patients.
Its purpose is to proactively act from the moment of diagnosis, the early stages of the disease, and the appearance of the need for care to cope with daily life, adapting them as the affected individual evolves. But with a single goal: all this support takes place in their own home. To achieve this, an integrated socio-health process is developed, offering respectful support and promoting active social participation. In addition, a review is applied to limit the co-payment established for all participants in the program, including ALS patients.
Since the implementation of the ‘ALS Protocol’ within the ‘INTecum’ program in 2023, a person-centered care system specific to this group has been established, always in line with their own decisions and demands. Those in need have been provided, free of charge, with products to help them face daily life, such as articulated beds, mattresses and pressure-relief cushions, hoists, personalized wheelchairs, adapted harnesses, electric lifters for the bathroom, or swivel chairs for the bathtub. Additionally, the acquisition of these types of products has been financed up to 50%.
With the same percentage, the agreements include funding for adaptations and renovations in the private homes of ALS patients, which have been essential for these individuals to continue living in their own homes. As of 2024, accessibility works have already been financed for 20,437 euros.
Furthermore, the Department of Family and Equal Opportunities included residential places for caregiver respite situations. A resource that was provided to four people in 2024, including the total cost of residential services at a private center for up to one month. Always in the center chosen by the affected individual and the family in accordance with their needs and preferences.
Increased support
Comparing the data from 2024 to the previous year shows a significant increase in services. Regarding individuals who received rehabilitation therapies and home assistance through ELACyL with financial support from the Junta, there was a 31% increase, from 205 to 269. Additionally, there was a 17% increase in the number of interventions carried out by the organization’s workers last year.
Regarding specific therapies and services, home physiotherapy increased by 25%, while clinic-based physiotherapy increased by 22%. In terms of speech therapy, there was a 13% increase in home services, while clinic-based services saw a 29% increase. Home assistance also grew by 22%.