Roger Vilaseca, a 34-year-old man with a disability, has been waiting for 12 years for an assistance resource to be able to live independently without depending on his parents
It was a memorable day. That feeling of to be able to fly free, to touch the sky with your hands. The day Roger discovered that despite having an intellectual disability, I could go skiing alone to La Molina without depending on his parents to take him. He caught the train, was picked up by an attendant at the ski resort, and was able to speed down the snow. Since then, he has participated in the Spanish Special Olympics team and has participated in various world competitions. That’s why it’s hard for him to understand why it is so difficult to leave your parents’ house. “I feel stagnant, I am not moving forward,” he continues. In 2009, the Generalitat recognized her the right to access a home with intermittent support. Since then, he has been on the waiting list. In February it will be 13 years.
Roger has a 53% intellectual disability. His parents Teresa and Ramon sensed it when he was just beginning to walk. “They still don’t know what I have,” Roger laughs, but it is clear that it is related to autism spectrum disorder, in addition to dyslexia. The family, from Sant Quirze del Vallès, took him to school like the rest of the boys, but assuming that something was not going well. In high school he studied it in a special school, and after spending three years studying cooking, he went to work in a restaurant. “It’s that I’ve never been without doing anything, first I worked as an internship and then they hired me permanentlyI’ve always been ahead, “explains Roger.
In 2014 the family moved to Barcelona, leaving a lifetime in Sant Quirze del Vallès. “We are in front of the Sants station, which for Roger is important, and here there are many more servicesFor example, he goes to the pool every day, trains in triathlons, he can go skiing alone from home … these are things that were impossible in Sant Quirze, “says the father. In fact, in Barcelona, Roger participated in a plan town hall pilot a couple of years ago, where you could access, on a pilot basis, what the Generalitat should have offered you for decades. “For the first time I was doing things by myself and I had the help I needed, which doesn’t have to be my parents,” he says. “The problem was that I had to go live very far, in the Free Trade Zone, I did not know anyone and with the pandemic, we could not go out … I felt very alone,” he continues. The project is now over and Roger has returned to his parents’ house.
The disability prevents him, among things, from reading and writing. “I need an assistant to read me whatsapps, emails, letters …“, he explains. He also needs support to make the purchase or to manage his money. “If it depends on me, two days after getting paid I have already spent all my salary, there I need help”, Explain. These are the things you should do with an assistant, a role that your parents perform today. “It’s complicated, it’s like he’s still a teenager, like he can’t grow up like the rest,” says Roger with a half smile. He has seen how your friends or siblings have left your parents’ house, they have become independent, and he refuses to think that he cannot take that step.
Parents’ fear of old age
The key factor is the contribution that the Generalitat must make through the dependency law. “We cannot afford it, it is very expensive to do it privately“, says the father, Ramon, who fears that as the years go by, they will have less strength to be able to accompany Roger.” We have always tried to anticipate, to encourage him to take steps, but with this issue of housing, of access to the residential home, it is impossible, “he explains.”If we die or if something happens to us, we have it very clear that they would send him to a residence in a simple matter. But where? Will it be a good place for him? Will you be able to make your life as autonomous as possible? For us it is important that now he can have access to be able to accompany him and know if it is the best for him, “he insists.
Unfortunately, Roger’s is not the only case. According to the Dincat federation, which groups together entities that care for and represent people with intellectual disabilities, there are 3,500 people waiting for a residence, home-residence or assistance in the home. In addition, they say from the entity, more than a thousand also hope to enter day centers or day services. The Generalitat partially corroborates the data. It assumes that there are 2,305 people with intellectual disabilities waiting for a residential home and 1,075 for an assisted residence, but states that these figures cannot be added because, according to the Department of Drets Socials, there are people who are listed on both lists. What is evident is that the data on people with physical disabilities in the same situation are much lower: 56 and 339 people on waiting lists for both services. “It seems we don’t exist,” Roger complains. “But I have the right to feel free like the day of La Molina“.
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