Quadriplegic daughter family facing financial disaster: A family with a quadriplegic daughter without an adapted floor loses almost all of her dependence pay: Serveis Socials cuts from 442 to 36 euros the benefit received by the mother of a young woman with a great disability.
Macarena Giménez is 28 years old. She suffers from spastic cerebral palsy, is quadriplegic, blind in one eye and can barely see in the other, has dislocated hips and often suffers from psychotic outbreaks. A year and two months after birth, a doctor told his parents, Carme Velázquez (64) and Joan Giménez (71) that from then on they would be "the arms, legs, eyes and head" of his daughter. Since then, the life of this family in the neighborhood of Hostafrancs (Barcelona) has been "a constant struggle," explains the mother. The case has caused a stir after a call from Carme to El Món to RAC1.
The young woman has a recognized 94% disability and the third degree of great dependence. In 2009, under the dependency law approved by the Government of José Luis Rodríguez Zapatero in December 2006, Carme was assigned a benefit as a non-professional caregiver of more than 500 euros per month, retroactively since 2007. With the crisis and the cuts applied by the Executive of Rajoy the pay stayed at 442 euros.
On March 12, the General Directorate of Social Protection of the Generalitat of Catalonia sent to the family the first of the three resolutions that they have received in the last two months, in which they are notified that the aid amounts to 36 ,30 euros. The reason is not explained, beyond providing the legal grounds that motivate the decision and refer to the law. The Departament de Treball, Afers Socials i Família indicated to this newspaper that it is studying the file to determine if it fits another type of aid.
Quadriplegic daughter family facing financial disaster
Incompatibility of aid
The regulation foresees cutting benefits to carers of people with disabilities who attend an occupational center
The lawyer Maria Luz Serrano, who advises the family, has filed this week appeal against the last of the resolutions, on May 30. It argues that there has been no new circumstance in the living conditions of the family that justifies this new cut and that the state of Macarena meets all the requirements required by the PIA (Individual Care Program) so that his mother continues to receive the amount that in her day she was stipulated as an informal caregiver.
However, the appeal has no prospect of prospering, as acknowledged by the lawyer in an interview at RAC1 last week. The Consorci de Serveis Socials de Barcelona, the public entity comprising the City Council and the Generalitat that manages the dependency benefits in the city, argues an "incompatibility" between the different aids that the family receives. In particular, she argues that Macarena attends an Occupational Therapy Center, and that therefore the benefit her mother receives as a caregiver has to be drastically reduced: "The State Dependency Law and the Catalan regulations foresee incompatibilities: in these cases the prevalence provision of the occupational center, the main resource, and payment to the caregiver is reduced ", indicate municipal sources.
David Villanueva, senior technician of Dincat Plena Inclusió Catalunya (Catalan Federation of Intellectual Disability), reveals that the case of the Giménez is not extraordinary: "The benefits for non-professional caregivers are by far the most requested by families in charge of people with dependence - to the detriment of other options such as home personal assistants - and in recent times they have been greatly reduced ". The issue is that social centers do not cover all the needs of people like Macarena - she comes between 9.30 am and 4.30 pm -, which leads to an overload of work by family members, who often have to leave their jobs to act as caregivers. If in addition they see reduced or eliminated the economic aid that they received to take care of their sick children or their parents majors, the situation acquires dramatic tints in some cases.
To establish the amount of payments, the dependency law takes as reference the income of the family entity entitled to help. Although serious, the economic situation of the Macarena family is not of extreme necessity: "I know worse cases," Villanueva warns. Each member of the marriage receives a non-contributory pension of about 500 euros, in addition to a dependent child supplement for a similar amount.
But these 1,500 euros per month are not enough to cover the expenses that families with people with disabilities have to face: "Drugs and hygiene products that do not enter the Social Security, transport by taxi to the occupational center in winter and the beach in summer-, the "caterpillar salvaescaleras" (the orthopedic chair they need to go up and down the stairs of their apartment, valued at 6,500 euros, of which the Generalitat pays 3,000), food, dining room and other complementary services of the occupational center (with a cost of 220 euros per month), ... ", says Carme.
Economic damage
"For 22 years we have asked for an adapted social housing, but they have never given it to us"
However, the economic grievance that involves the amputation of Carme's pay as caregiver is not the greatest injustice suffered by this family: "The floor is scandalous and incomprehensible," laments his lawyer. "How can it be that this family does not have access to a home adapted to people with reduced mobility?", Says the technician of Dincat Plena Inclusió. It will not be because Joan and Carme have not asked for it: "22 years ago we asked for a Social Protection home adapted to our needs, but they never gave it to us," explains Carme.
The floor of Sants where they live has 40 m2. It consists of a single room, where Macarena sleeps, in a large bed, and Carme, in a single one, (Joan "rests" on the sofa); a storage room, a tiny dining room (the only place where you can unfold the contraption with which the young woman moves), a kitchen and a sink that Macarena can not access because it is not adapted. There is no ventilation, because the only window on the floor can not be opened ("it leads to an abandoned gallery and that's where everything comes in", says Carme), so that the fumes and smells of the kitchen go directly into the room where Macarena He spends most of the hours. There is no elevator either, so Joan and Carme go up and down the stairs - at least twice a day - to their daughter Macarena by weight. They are 60 kilos, without counting those of the "caterpillar".
During all these years, the family has been fulfilling the interminable bureaucratic procedures demanded by the different municipal teams that have governed the headquarters of the Sants-Monjuïc district to access housing adapted to their needs: "Some time ago we explained our situation to the district councilor Laura Pérez. We explained that we need a space with minimum accessibility conditions: at least one wash to clean Macarena and an elevator. He answered us and told us that it is unacceptable that we have to live in these conditions, but at the moment of truth they do not give us any solution, "Carme laments.
The Consistory admits the situation of vulnerability of the family, but defends that "all the necessary steps and coordination have been carried out to guarantee the correct provision of services to the family". Municipal sources add that "at this moment, they are trying to find a new adapted public housing" for them.
According to the law 13/2014 on accessibility of the Generalitat de Catalunya, all social housing promotion must reserve 3% of the units to adapted floors to enable the autonomy of people with disabilities. Likewise, the regulations approved by the Barcelona City Council at the end of last year, which will oblige developers to allocate 30% of new promotions or major renovations to public housing, also foresees that 5% of these flats will be adapted. These places can be requested whenever the situation makes it necessary and certain requirements are met. This is the case of the family formed by Carme, Joan and Macarena. However, more than two decades later, they are still waiting their turn.