APNEEF, a tribute to life and commitment
By Marina G. Peñarrubia
We have enjoyed the opportunity of getting to know the story and the heart of APNEEF (an association for people with special needs in Ibiza and Formentera) thanks to its president, Susi Fresneda and its coordinator, Carmen Bonet. The former was one of the first members of this well-known island association. It spontaneously came to being in 1998 as a not-for-profit thanks to a group of parents who found themselves in similar situations and decided to join forces because of their need and desire to help their kids do well. This is a story of unconditional love and commitment, an example of how community values are healthily present in Ibiza.
As with all great endeavours, things were not easy to start with. “We began little by little, fighting first at individual level. One person would solve a challenge and would share it with the rest. One of the mothers started studying psychomotor activities, I trained in hydrotherapy. Us parents did everything ourselves”, explains Susi Fresneda with her voice full of strength. Next to us is Lucas, her 11-year-old son, from whom she never parts. Doctors gave him a week to live when he was born, because he arrived without a brain and with a 98% disability level. His case was taken to Boston as it was the first one registered of its kind. “We were very lost, perhaps we didn’t do what he needed us to do at that time”, Susi goes on. That is one of the main aims of APNEEF: to establish a system through which families receive guidance and support, that allows them to evaluate the difficulties the child has and the options before them. Especially those families who have less resources.
“Meeting other mothers who have gone through something similar helps you a lot psychologically”, Susi explains, “you must not set any limits, as no-one knows what can happen”. The association is very much aware of this side of things, almost as much as they care for the wellbeing of the children. “It takes time to accept that you did not bring a healthy child into the world, and instead a different child has arrived. Mourning is needed to attain acceptance. There are parents who after one month get their energy back and others cannot, and that reflects on the child.” Over the last decades, associations like APNEEF have emerged in many cities. As well as offering assistance, they have broken old paradigms, such as the belief that having a member of the family with some kind of disability is a tragedy or an unsurmountable obstacle.
APNEEF has reached hundreds of children in Ibiza and Formentera, from newly-borns to 18-year-olds, offering them support also in adulthood. Nowadays the association has a solid working network and a long list of businesses and individuals who offer their bit of support. The APNEEF team wish to thank each and every one of them from these pages, because “all the work we have done and all the improvements in the children’s lives would not have been possible without them”, as Susi points out. “We are where we are thanks to everything that arrives. And it’s a constant process, as new children come every day and those who grow up also mostly stay with us”, emphasizes the president.
It’s not only about financial help – there are all sorts of contributions. For example, the furniture from their headquarters was donated by a company, “which is second-hand sanitary equipment, but that doesn’t matter, it’s really useful to us”. The alarm system, the painters… all came generously and even in the legal department there are people who participate by doing paperwork at low cost. Anyone can help out by doing whatever they do best.
While the Consell and Balearic Government finance part of their basic health services, most of which cannot be found in hospitals, APNEEEF has many other projects on the go. At the weekends they organize alternative therapies, such as hydrotherapy and equine therapy, which are methods based on water and on horses in order to treat various difficulties. There are also respite weekends during which the children stay at hotels and have fun with monitors, giving the parents a breather twice a year. The rest of the calendar is full of events: outings, workshops, sports days or cooking contests all contribute to the integral work that is being done with the children.
One of the biggest aims of APNEEF is to manage all their projects affordably so that they depend as little as possible on public funding which, sometimes, just doesn’t get there on time. “During election time, politicians’s doors are always open, but afterwards they tend to be too busy,” explains Carmen. The association now has its eyes set on a Can Misses building that is empty. “This space would be really useful to us, as there is still so much to do – and not having to pay rent and electricity would help greatly”, as Carmen points out.
Basic services are offered during the week, in the afternoons at different schools that offer them space, and in the mornings at their headquarters in Eivissa. This venue has adapted facilities and a lot of coming and going of workers. Ibicasa had the privilege of witnessing the vocational commitment of the people who work there: psychologists, child specialists, physiotherapists, speech therapists, psychomotor therapists, games monitors, administrative personnel and, of course, the volunteers. APNEEF also offers training for students on placement and for volunteers, who are welcome to work there when the association needs them. Not only is there demand for health professionals, though, and so all CVs that arrive here are read and filed: computer experts, translators, salespeople, plumbers, artisans, cooks… all are welcome.
APNEEF, a project that was built through the love and cooperation of a group of people, has become an institution that benefits us all somehow. Anyone is at risk of reaching an emergency situation they are not prepared for, and receiving the most appropriate attention and treatment is, without a doubt, a great step forward for our society. “We never say ‘no’ to any child. We open up a waiting list, we do our best to find room for them”, Carmen assures us. Staying put is not in the plans of APNEEF. “We really have activated so much. What is most comfortable for associations is to receive public funding and stay there. It takes a lot of work to organise events,” explains Carmen, and there is still much to do ahead.
“There is no help aimed at setting up new things. If anything is required, it needs to be the associations who set it up and, once it is up and running, then the Administration is willing to support and you can get signed agreements”, Carmen tells us. For this reason, APNEEF never ceases to look for funding, help and resources off its own back. “Children are constantly arriving and those who stay do not only need help until they are in their twenties – they continue to grow and mature and still need ongoing support,” states Susi. The association cannot let go of the responsability they have towards each of those individuals, even as grownups. And that is another of their main objectives: for the Administration to cover the basic services and thus allow them to develop and increase the projects on the horizon. “As long as the basics are covered, we can deal with sorting out the rest,” Carmen assures us: activities, extra support, housing systems that allow more independence… These are all small but key steps towards increasing integration and improving the lives of these special children and adults who are a very important part of our society. •