The long wait for dependency: "Every day is a battle"

BarcelonaEduard Ges' daughter was diagnosed with epilepsy when she was eight months old. From then on, a real bureaucratic labyrinth began, which all families go through to access a dependency benefit, and which can be summed up in two words: ratings and information. The access door to services recognized by the dependency law - which is not only designed for older people - is a real headache due to the long waiting lists that force people to pay in advance. The girl is now two years and four months old and requires numerous sessions of physiotherapy and psychologists in private centers while public aid is not coming. "Every day is a battle with the paperwork," complains Ges.

On March 15 of last year they began to carry out the procedures for both dependency and disability, which go through different routes. As for the degree of disability, they are still waiting for the technicians to make an assessment, while the one for dependency was faster than expected, since a month later she was already passing the exam at home that determined that she had a grade III. This is the highest level on the scale and indicates that the person does not have personal autonomy and needs help with basic routine activities.

However, the speed has not meant that they have seen any help. In fact, they do not even have any official notification about the grade, although the child has already gone through the mandatory semi-annual grade reviews by law. Meanwhile, since mid-January, five weeks ago, the girl has passed the Individual Care Plan, known by its acronym PIA, which details the individual's needs and the benefits to which he is entitled. In his case, it is 455 euros, the maximum benefit provided for by the dependency law.

The family has not yet seen a single euro and pays for everything the child needs out of their own pocket. "We have been told that when we get paid we will start getting paid in September," says the father, who has left work and has taken advantage of CUME, a state subsidy that compensates for the loss of income of parents with dependent children with serious illnesses. The problem, he complains, is that this aid is only received when there is a diagnosis and no one takes into account the hours of work lost and the kilometres travelled while the tests are being carried out.

The family lives in Tona (Osona) and must also face the journeys to see at least two psychologists and physiotherapists or the specialists at the Sant Joan de Déu Hospital. In the bureaucratic difficulties Extra expenses due to disability are addedThe little girl still doesn't walk and a doctor advised them to buy her a platform to keep her standing for a few hours a day, but it cost 2,000 euros. "Luckily," says Ges, they finally found a free one.