María del Carmen is 53 years old, lives in Las Palmas de Gran Canaria and for several years she started having problems with her hands. He had carpal tunnel surgery, but the pain continued until, in 2018, he was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Since that moment, he has been monitored by a team from the Doctor Negrín Hospital. “Currently, I am dependent for basic activities of daily living, requiring continuous support and supervision. “I have lost strength in both hands and legs in addition to having difficulty breathing and loss of speech,” he explains in a recent complaint that he has sent to the Common Deputy.
The complaint of María del Carmen and her husband Alberto comes from the battle they are fighting against bureaucracy and long waits, in addition to the lack of information they find before the administrations. This woman was recognized in 2018 with degree two of dependency, but her situation has been worsening. Therefore, in April of that year the family requested a review of the grade in order to have more hours of care. Eight months later, they are still waiting, while the disease progresses.
Currently, he receives a Dependency Law benefit of about 375 euros, which is barely enough to pay for two and a half hours of home help per week plus physiotherapy sessions. For this reason, they have requested this review, which they consider essential, above all, to increase the number of hours of home help.
In the summer they assure that he was recognized with degree three of dependency, the highest that exists, but the family is still waiting for the PIA (Individualized Care Program), a resolution in which the amount to be received and the resources are determined. to which he is entitled. Alberto explains that this second phase of processing dependency aid is being an odyssey and that he has encountered a wall of silence. “The administration is making it more and more difficult, everything more difficult,” explains María del Carmen’s husband, who affirms that due to this uncertainty and struggle he has lost 14 kilos.
María del Carmen has to go between three and four days a week to the Doctor Negrín Hospital, as well as to a physiotherapy room to work on her muscles, position her shoulder and stimulate her… Alberto explains that he, who is 54 years old, works in shifts rotating sessions and that when it is his turn to work in the morning and his wife has those sessions, he has to be accompanied by a person who they have to pay for out of pocket, since for some time now he has not been able to leave the house alone or take public transportation, where he has suffered several falls.
“The situation today is terrible. Every day we are climbing a mountain only to fall again. And we always move in the same loop,” says Alberto, who remembers that he is mobilizing so that his wife receives the corresponding help, but that there are people who are alone and do not have support to deal with so much bureaucracy and administrations. public. In the General Directorate of Dependency of the Government of the Canary Islands, a complaint has also been filed.
The other battle that María del Carmen and Alberto are fighting is against Social Security. Also in April of this year he requested a review of his absolute permanent disability, as his situation has worsened. The husband emphasizes that on November 27 he went to the INSS office in Las Palmas de Gran Canaria to find out how his file was. He states that the answer he was given is that perhaps by March 2025 they will study it.
In their complaint to the Common Deputy (presented on December 17), María del Carmen and Alberto demand that the resolution of the PIA corresponding to grade III be expedited and that the review of absolute permanent disability be expedited. To do this, attach supporting documents and medical reports.
In addition, they remember that Law 3/2024 of October 30 to improve the quality of life of people with Amyotrophic Lateral Sclerosis and other diseases or processes of high complexity and irreversible course highlights the commitment of the competent public administrations to ensure dignified treatment, respectful and appropriate. In fact, this new standard establishes measures such as streamlining procedures for the recognition of disability or the training of health workers and caregivers.
It should be remembered that Amyotrophic Lateral Sclerosis (ALS) “is an incurable neurodegenerative disease that affects the motor neurons of the brain and spinal cord. This pathology causes muscle atrophy to the point of leaving the patient completely immobile, unable to perform basic tasks such as eating, speaking or breathing, but with the mental and cognitive faculties intact,” states the Law. The Government reported that ALS affects around 4,000 people in Spain, with 900 new cases diagnosed each year. The average age of onset is between 40 and 70 years.
This newspaper has asked the Department of Social Welfare of the Government of the Canary Islands about this case and the delays in the degree of dependency reviews, without obtaining a response for the moment. He has also asked the Ministry of Inclusion, Social Security and Migration about the average waiting times for disability reviews in Las Palmas, but no response has been obtained either.
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