One and a half years waiting for ELA aid: "We still have to pay money"

BarcelonaIn October 2024, when the Congress approved the ELA law, at the home of the Culleré-Piqué family, a bottle of cava was opened to celebrate that, finally, the sick peopleThe family complains that, while the Generalitat has avoided service cutsthe Catalan law, which complements with a maximum of 4,929.5 euros per monthCompanies charge 18.5 euros per hour of care during the day and 22 euros at night and on weekends, in addition to mileage charges – between 0.26 and 0.32 euros. That is, the estimations of the Department of Social Rights to calculate the aid do not take into account the extra amounts for night and holiday hours nor the travel expenses of the workers that companies do charge. Therefore, the difference is borne by the Culleré-Piqué family. Social Rights assures that, for patients with annual incomes below 53,000 euros, the system covers the total cost of the service. Above this threshold, a co-payment of 5% applies.

Until now, through the dependency law, a company contracted by the county council provided professionals to the family, but, as they needed more, the family had to pay part of it out of their own pocket. With grade III+ recognized, they have had to hire two companies –the only ones operating in the Lleida region– because one alone does not cover all the hours. The department transfers the money to her and she pays the companies and has to present the invoices every month. More bureaucracy and stress for families who are already overwhelmed. "Here the only beneficiaries are the State and the service companies, but not the workers who have precarious wages," analyzes Piqué.

Five years ago, Josep Culleré was diagnosed with the bulbar variant, which affects the brain and, unlike the common form, first affects respiratory and nutritional functions – it prevents swallowing food and liquids normally –. The progression of the disease is so rapid that he immediately needed help, and now he lives bedridden in an adjustable bed "without moving a muscle", hooked up to a respirator and with someone watching to prevent any obstruction – mucus or saliva – from choking him. Culleré had to delegate the management of the family farm, although he still "commands" through an adapted tablet because he has "an intact mind", explains Piqué from Belianes.

In fact, the diagnosis forced the family home to be adapted: they widened the doors, installed an elevator and an electric generator to ensure electricity, and even remodeled a van. Piqué lists the price of the bills: 14,000 here, 5,000 there. "Everything paid out of pocket; for a year and eight months we received nothing. Luckily, we've been a saving family," she states. From family income, both hers and that of her two adult daughters and her 81-year-old mother, who rally together in caregiving, a good portion of the salaries of professional caregivers has come.

Behind the ELA law are years of struggle by patients and families to obtain sufficient resources to get through the final stage of the illness. For Javier Gámez, diagnosed over seven years ago and a lawyer specializing in dependency, the approval of the law represented "a paradigm shift" and a "historic milestone," but the big problem is that it was born with a "fundamental flaw." In response to questions from ARA, Gámez – who had been a commissioner of the Mossos d'Esquadra – replies in writing and criticizes that "the rulers" were carried away by "the discomfort" of legislating for a specific group and avoided framing ALS "within the healthcare system, which is universal and free," and instead opted to "throw patients to the wolves" of the dependency system (SAAD), "which is social in nature and subject to co-payments and deductions," and which does not meet real needs. "It's the same old deception," he states.

Piqué also says she is disappointed by the administrations' treatment of these patients, who are running out of time. "The last of our euros will go to Josep, but with so many problems, they push patients to ask for euthanasia," she laments.

Fast and expensive

ALS is a disease characterized by its speed –"today you are standing and the next month you are in a wheelchair"– and by consuming a lot of money to pay for the professionalization and specialization of care. "My house is an ICU," states Piqué. Gámez details the necessary and expensive "orthopedic equipment" – articulated beds, transfer hoist, bathroom chairs…– that the Catalan ALS Foundation Miquel Valls, a reference in the disease and which supports claims, provides.

However, in addition, there are "invisible expenses," such as the electricity bill for the devices, medications, unfunded medical supplies, or constant massages to treat cramps or sores. Furthermore, family organization suffers, and the caregiver has to give up working, and therefore, their social life becomes very limited. "My friends and my sister-in-law take care of me, who take me out for a snack if I find someone to stay with Josep, who cannot be alone," illustrates Piqué.

Bureaucratic slowness is another of the great contradictions of an expected and necessary law. Firstly, because between the law and the decree that created the new figure of dependency grade III+, intended to speed up the procedures for patients with ALS and other very disabling diseases, a whole year passed during which, according to Gámez's calculations, 1,100 affected people died in Spain. It was not until March of this year that the Generalitat pushed forward its own decree, increasing the contribution.

The Minister of Social Rights, Mònica Martínez Bravo, has reported that the department has already recognized 105 affected people with grade III+, although only two have collected. Payments will be made retroactively and it is estimated that 200 patients will benefit. The department insists that the law has just begun to be implemented and that adjustments can be made, such as increasing the financial contribution for patients living in municipalities with fewer than 20,000 inhabitants.

Culleré lives in one of these rural areas of Urgell, and the subcontracted companies to provide home care for ALS patients cannot attend to them because they cannot find caregivers. Or only partially. Carme Piqué explains that she has to go to great lengths to find them, even if they lack the necessary specialization. "I teach them myself, and I altruistically teach anyone who asks me," she states. She attends by phone to ARA thanks to one of her daughters – both healthcare professionals – covering for her in the care.