Almost every day Obdulia visits her son, who suffers from severe multiple disability, at his home in San Juan de Alicante. You read that right; not a ‘hospice’, but rather a ‘home’. That is the whole idea. To demonstrate that adults suffering from such a condition can live together with a certain degree of autonomy in supervised accommodation. In this new chapter on our Neighborhood Superheroes, we present this pioneering initiative in Spain, run by the Lukas Foundation.
TEXT: FRANCISCO JAVIER SANCHO MAS IMAGENS: LEAFHOPPER
When Obdulia (a 61-year-old nurse in Alicante) calls the cruise company, she always warns them in advance: “We’re bringing someone in a wheelchair.” She does not say that it is Arturo, aged 26, who has suffered severe multiple disability from a young age. Nor that he can still move his hands, albeit with stunted fingers, or that he mainly communicates through smiles and his eyes.
Can you imagine it? 26 years caring for Arturo full time, as well as two other children. Now, Arturo (from now on we will simply call him ‘the traveler’), can also count on the assistance of the Lukas Foundation staff. Like José Carmona, a young occupational therapy assistant, who is looking after Arturo and his companions this evening. And Yolanda Santos, a social educator and program coordinator. And the rest of the center’s eight workers who work morning, evening and night shifts. A total of 19 foundation personnel ensure that the residential center runs smoothly. There is Inmaculada Grimal, a social worker, who shows you round the facilities smiling all the while. Everything is spacious: rooms, corridors and the bathrooms, each shared between two rooms. There, thanks to the adapted beds (really expensive, by the way) and harnesses, the caregivers are able to bathe all the residents.
During the day, there is also a therapy center which opened in 2014. Last year alone, they provided 1,400 therapies to people with disabilities of various kinds who come here to receive care and treatment. When evening comes, the six companions move into their home, which started up in 2016. “And look,” Inmaculada says to us, “look!” It is a sensory garden, each section filled with different smelling plants and adapted spaces. The foundation actually started off adapting playgrounds in both Madrid and Alicante, so as to demonstrate that inclusion was feasible if the conditions were right. And “look”, Inma enthuses: the bikes. Bicycles adapted for people with disabilities. The bikes are maintained and fixed by homeless people from the Santa María de la Paz hostel run by the San Juan de Dios order.
“And look!” Inma, the social worker, continues, “come in here”.
We are in a sensory room. You lie down on a water bed, connected to a stereo system that boosts the bass or treble frequencies according to your mood. And you feel the vibrations. “And look!” Up there, on the ceiling, moving lights simulate amniotic fluid.
The founder of Lukas, Anne Marie, is a Dutch lady with jet black hair. She came to live in Spain with her family years ago, because her husband, a textile engineer – who happens to be passionate about renewable energy sources – was transferred to our country. Alphons, her husband, is behind the warmth of the Lukas home. Thanks to contacts and friends, he managed to source 176 photovoltaic panels that make the center 85 percent energy independent.
She had no previous contact with severe multiple disability prior to starting the foundation. No close relative. It was a friend’s son that inspired her.
Together with a group of like-minded friends, she began to imagine adapted leisure areas. And, from there, came the “integration parks”. After building these parks in Madrid and Alicante, the foundation came about in 2014, with the day center offering all kinds of therapies (sensory stimulation, hydrotherapy, physiotherapy, therapies with dogs, etc.). Later, adapting models already operating in her native Holland, the home where ‘the traveler’ and his companions now live.
But, all this is not easy. You look at this foundation and think about the workers, the bikes, the adapted shower trolleys, trampoline mats, the park and the sensory room. And, of course, you think about money. How much all this costs.
“About half a million euros a year,” Anne Marie tells us.
“That includes all the donations and aid we receive. For example, that fully-adapted electric car was a donation from Nissan. And some 19 people on the payroll and a load of other expenses that would be impossible to meet without the help of many people, of all those kind institutions who come together in solidarity with us. There are so many that it would be impossible to list them all. Even those pictograms that teach people with disabilities to protect themselves from sexual abuse, given that they are especially vulnerable, cost money.”
“The first collaborators are the parents,” says Anne Marie. “Without their help, this would be impossible. They are fully engaged in their children’s care and adaptation. Our personnel is the other element.” One third of the expenses are covered by the regional government of Valencia. Another third depends on the organized events and its members (currently around 300). And another third comes from donations, such as the land provided by the city council, or the aid from sister organizations such as Fundación MAPFRE through the Vidas Cruzadas cause of its program Sé Solidario. “And also the collaboration of volunteers and a growing number of organizations such as the Rotary Foundation or the homeless people who maintain their adapted bikes.”
Is this model replicable in other provinces and regions?
“Totally,” Anne Marie affirms. “We would love that to happen. For researchers to come here and study it. Because we know it works. That it undoubtedly enhances the life of individuals with severe functional diversity. Because they live next to us, they are part of us. And people must be more aware of this. Everything else depends on political will and pooling our efforts. We have barely enough time and resources to do any more.”
Ignacio’s time in the ‘home’
Our other protagonists today are María Palacio and her son Ignacio. He was born 23 years ago, prematurely, with West’s syndrome. “He’s defying the habitual life expectancy limits,” María declares.
María took Ignatius to Alicante, to the Lukas home, during the second half of 2017. This was while she was waiting to be allocated a day center in Madrid, the habitual next step after these youngsters finish their schooling, when they are between 18 and 21 years old. Those six months at Lukas brought about tremendous progress.
What progress did you experience?
“Firstly, seeing him interact with other youngsters of his age in similar circumstances. Not continuing to treat him simply as a child. Well, he is like a child, really. He likes to listen to the radio and children’s songs, but, sometimes, he also has reactions that seem more appropriate to his true age.” Ignacio is all about smiling.
That is the thermometer María employs to gauge his quality of life.
“The day he stops smiling, I’ll start worrying. In the meantime, he needs attention every minute. You have to provide him with stimuli. Not simply sit by his side without interacting with him. He’s really receptive. When he feels he’s been ignored for a while, he starts complaining and gets sad.”
His smile is the thermometer of his life. But also his lung capacity.
“Once he started water therapy at Lukas, his lung capacity increased dramatically and it has not diminished since. It’s been impressive. Here, you don’t see Ignacio move around much, but he’s a diver in the water. Controlled apnea changed his life,” María states.
“He needs attention every minute,” María adds. And you notice the little tube and syringe on the kitchen table. Ignacio is fed via a tube. Attention every single minute.
All of them – those like Ignacio and Arturo ‘the traveler’ – require so much attention that we tend to forget those behind the scenes, ensuring they can live in dignified conditions and that the scientific and clinical world, as well as the healthcare services, adapt to their needs.
Meanwhile, at the home in Alicante, Arturo and his companions are already preparing for their next trip. Do you know where? Guess: The pilgrimage route to Santiago. They will be doing it in September. Riding the adapted bikes