Coronavirus raises costs without help for disabled families

“We convinced the person who helps us in the afternoons to stay in our house for a month. It cost us about 800 euros”, explains the mother of a young man with a 98% dependency

“Nothing is known about these kids like my son. They are totally invisible. We were aware that we were forgotten, but with the pandemic the maximum has been reached.” Montserrat ArÃ⁇ s she is the mother of Pol, a 22-year-old young man, affected by cerebral palsy and spastic tetraplegia. It is 98% dependent. “He cannot dress or eat alone, nor brush his teeth or go to the bathroom without our help. It is totally up to us,” specifies Arús.

The care that Pol requires was extreme for the family with the confinement, when the occupational center to which he goes closed, the assistant assigned by the Dependency Law he was unable to continue assisting him in the morning and there was no way to bring home essential exercises for the boy, beyond the video calls with which the monitors guided him. After coping alone, the parents had to pay out of pocket to avoid leaving Pol helpless while they covered the workday from their home in Sant Joan Despà (Barcelona).

“We convinced the person who helps us in the afternoons to stay in our house for a month. It was a very important cost, around 800 euros,” says Arús. In addition, the parents paid about 60 euros a week for two sessions of a physiotherapist to alleviate the sequelae that the confinement caused Pol. They also continued making contributions to the center where they treat the boy while they waited for it to reopen. “It is the most important thing that Pol has in his life,” praises his mother.

Tomorrow, December 3, the International Day of persons with disabilities. The director of the Catalan federation of attention to the intellectually disabled Dincat, Carles campuzano, warns of “important weaknesses” for the institutions to repair the extra costs that the coronavirus “has placed on the backs of families and entities.” Estimates that Generalitat must pay about 10 million euros that the services have paid to protect themselves from contagions.

The Barcelona’s town hall calculated in 2019 that the disabled and their environment suffer a decline from 17,000 to 41,200 euros per year by the cost of care and the loss of labor income. “We are families with very heavy burdens and the pandemic has finished us off,” Arús feels. Pol’s parents receive a pension per child dependent on 580 euros a month. After paying the centre’s fee and paying a caregiver, it is reduced to an income of about 100 euros, insufficient for the disbursement of the last months. They have not received compensation and the amount for the help that the assistant could not provide in the first state of alarm has not been returned.

“At first we had enough with the 100 euros that we had left because we did not hire anyone, but we had a terrible time. I could be on a video call and all of a sudden I would hear my son’s hysterical screams. I would run out to help him,” he recalls Arús.

Dincat asks for paid leave for those who look after their relatives because of the Covid. “We claimed them without success,” laments Campuzano. The lack has made it difficult for Arús to make teleworking compatible with the needs of his son: “My husband and I have been lucky that they have not fired us or given us an ERTE, but the companies have not received help to make us stay with our son. If we asked for it, it was at the expense of our income. ”

Unawareness

In turn, Dincat warns that the pandemic has revealed ignorance about the intellectually disabled. “There are people who have experienced the absurdity of seeing that they were allowed to go out to work but, instead, they could not go to their workplace and were still locked up in a residence. There has been the feeling that we were returning to a model in which it hid disabled people, “Campuzano censors.

The director of the foundation proposes that the Government raise the 7.5 million euros in which investment in disability care services has increased to some 20 million: “We could take an important leap to recover a decade of loss. There should be a commitment that the waiting list will cease to exist in the next legislature. In Catalonia there are more than 3,000 people waiting for a place residential, one-third of the statewide list. ”

“If they want to compensate the families, let them put resources in the centers. It is the only life our children can have,” pleads Arús, who notes that Pol has undergone a “radical change” since imprisonment: “Now it begins to happen. to do it well, to laugh and to speak, but still it has many fears “. However, she is recovering her routine, still altered by the virus: “In the center they cannot leave the classroom because there are not enough staff, but they are happy to go back to the pool. Within what they have, they are much more young He’s stronger than others. He’s giving us lessons. ”

SocietyThe legal vacuum allows cannabis clubs to avoid closure due to the coronavirus in Catalonia
SocietySecond life for closed kiosks in Barcelona
Covid-19Money from the ‘correbous’ to alleviate the effects of the coronavirus crisis

Deshawn