Tuesday 2 June – Republic Day, and Treviso is closed
Today is Republic Day in Italy and a national holiday, so when I arrive at Florence station to make my trip to Venice there’s a band playing on the concourse – rock music, but the number of seats and the fact there’s a man in uniform with a very feathery hat suggests there may be an orchestra coming soon.
Florence doesn’t seem particularly holiday-focused – shops are open, and trains are running as usual. But when I arrive in Treviso, it’s another story. I’ve reached the point in the trip where I no longer worry about finding my accommodation on arrival. My first priority now is always much more important – coffee. Today it took a bit longer to track one down than I expected, thanks to the holiday, but well worth it! Think I’ve definitely adjusted.
I like the look of Treviso and hopefully I’ll get a chance to have a look around before I move on at the end of the week.
Several emails waiting from people I’ve been in contact with over the last week, all wishing me well. That’s nice.
Wednesday 3 June – Mosquitoes and labyrinths
Very hot here, and I appear over the last 24 hours to have become an insect magnet. I remember, a bit late, that the last time I was in Venice I had a reaction to a mosquito bite and ended up on antibiotics. Note to self: must, must, must find a pharmacy for qualcosa contra le zanzare (something against the mosquitoes). I’m managing to add a few more words into the Italian vocabulary and even put together a few sentences. Quite proud of myself.
At the hotel, I meet Carlo Giustini, who is my interpreter, chauffeur and visit coordinator here. Carlo is project manager and corporate fundraiser for Oltre il Labirinto, “Beyond the Labyrinth”, a private foundation set up by parents of autistic children who felt existing services didn’t meet their needs. That was in 2009, and its work has expanded to make it a frontrunner in service planning and provision not only in the Veneto region but in Italy as a whole.
I begin by meeting the organisation’s director Mario Paganessi, a forward thinking entrepreneur with a business background in engineering, marketing and retail across three continents. Mario returned to Italy to be closer to his family and his son, who has autism. Feeling the parents’ foundation was in danger of losing direction, he took on the directorship with another associate, Alberto Cais, as president. The plan was to devote 3 months to stabilising the organisation and getting it on track. He’s still in post.
As an example of how peer support and private enterprise can combine to develop strong progressive services, I get the impression it would be hard to better Oltre il Labirinto. Mario is committed to high quality provision, first and foremost for the families who founded the organisation and those who have subsequently become members, but increasingly for those who are beginning to contact them thanks to their reputation as leaders in the sector.
As the children around whom the foundation was originally developed move into secondary education and on into adulthood, the organisation is developing “next step” programmes to help establish a long term, sustainable level of individual support through the years immediately post school and, ideally, for the rest of their lives.
The intention is to equip young people to live as independently as possible, and to ensure appropriate support will always be available for those who need it.
Oltre il Labirinto maintains a team of educators and operators from a range of backgrounds, including qualified psychologists and therapists. In addition to their professional qualifications, every member of the support team has received specific training in autistic spectrum conditions and how these impact on individuals and on families as a whole.
The organisation’s programmes are in the early stages of development, but plans are being put in place now so that by the time the children they support reach this stage, there will be a clear pathway appropriate to their needs and interests.
As part of this, Mario tells me about initiatives such as cork recycling and wine bottle labelling that are developing into sustainable businesses, generating income and forming the basis for ongoing employment opportunities for young people in the future.
In terms of service organisation and provision Oltre il Labirinto is a very different model from anything I’ve ever encountered, but there’s no doubt it’s filling a very real gap in services both for young people themselves and their families, and their commitment to high quality provision and building strong partnerships across Italy and beyond is admirable. I’ll be really interested to see how their work develops over the coming years.One pioneering project is the “Hug Bike”, a specially engineered tandem with disabled people in mind that allows the person at the rear to control and direct the bike while the person at the front experiences the feeling of freedom generated by cycling. The high quality customised bikes are assembled and sold from the foundation’s premises in Godega, and new markets are currently being explored outside Italy. Carlo’s 13-year-old brother Ottavio, who is autistic, even presented one to the Pope during a recent audience at the Vatican.
It’s a day with a great deal of food for thought. The one thing that comes through strongly is the commitment from everyone to communication, both across professional disciplines and with families and carers, with the individual needs of the person being cared for at the centre. The focus is always on linking services and service users to their wider community, and the organisations I’ve seen today have a very high level of flexibility in developing useful partnerships and responding to service needs.
Of course, as with any private enterprise, that puts a huge responsibility on the organisations to ensure quality of provision, and also to address the issue of accessibility to families on low incomes or in difficult circumstances. In Italy, there are regulations around the foundation of the “social cooperatives” that set up organisations such as Oltre il Labirinto, and these provide some safeguards.For now, though, it’s clear Oltre il Labirinto and their partners have a much higher level of flexibility and responsiveness than many of the services I’m used to at home.
Thursday 4 June – Less a community, more an extended family
This morning began by going over Carlo’s role within the foundation, which is primarily to build networks and partnerships across Europe, and to pursue funding from the many EU funding streams in existence to support the development of social services.
As part of this, Oltre il Labirinto has sent him to EU workshops and courses in Ireland and Belgium, geared to equipping social organisations with the information and skills they need to access Erasmus Plus and other key income streams. Many require no government or municipal backing, simply an awareness of the possibilities and the skill to put together a viable proposal.
We meet Carlo’s mother Laura for coffee at Pasticceria Savoia. Laura is one of the parents who, with the present director Mario, founded Oltre il Labirinto after Carlo’s brother Ottavio was diagnosed with autism. Ottavio is now approaching a key year of choice and change within the Italian school system, and it’s interesting to hear Laura’s thoughts on what the options might be for someone who is clearly high functioning but facing challenges within the current system. I’ll be writing more about this in my final report.
It’s interesting too to meet the owner of the pasticceria, Gennaro Immobile, who since February has had a young man working for him on a placement arranged by the foundation. Gennaro tells me the placement has been very successful, and has been extended beyond the original agreement at his request. The 17-year-old comes to the pasticceria every Friday morning in place of school, and helps with general duties. He requires supervision, but Gennaro doesn’t see this as a problem, and he feels it’s a good thing to be in a position to help with providing work experience. We chat for a while about the challenges of employing someone with learning difficulties, but for Gennaro, there’s little that can’t be overcome by good planning and flexibility. He’s already intending to take someone else on placement when the current arrangement comes to an end.
After lunch we pick up Anna Cilea, a psychologist who took the foundation’s autism awareness training course 3 years ago, and travel to Godega di Sant’ Urbano at the foot of the Dolomites. Here is the centre where the foundation’s Hug Bikes are assembled, and the cork and wine labelling businesses are based. Domenico and Lorena, who run the centre, are also founding parents of Oltre il Laborinto, and at 20 their son Simone is the oldest of the people the foundation currently supports.
Anna has worked one-to-one with Simone for several years and knows the family well. The local community allowed the foundation to buy the existing buildings and land, formerly the community hall, and they are now the home for workshops and camps throughout the year, where young people come with key workers such as Anna – and definitely not with their parents – to engage in a range of activities.
I found Domenico and Lorena to be great people, visionary, strong and very committed to achieving the best for Simone and for other young people like him. In conversation with them, and with Anna, I begin to develop a sense of the communities they envisage for the future: not only supported work opportunities and appropriate psychological or physical therapies, but strong sustainable long term relationships that maybe come as close as possible to replicating the support and individual care parents often continue to provide. The idea is that by the time parents are less able to maintain a full time caring role, a network of contacts has been established who not only have the necessary professional skills to support people at an appropriate level but also an existing relationship of trust with the family and the young person themselves which will continue on to the next stage of their lives.
“This is where the Fondazione comes in,” Domenico tells me. “Then, you aren’t alone confronting the challenges. There are other people who know what you are experiencing and who can help plan and support you. That’s so important, especially as children get older.”
I loved visiting Domenico, Lorena and Simone. I even got to try a Hug Bike with Domenico steering – which I can thoroughly recommend.
There’s no doubt Oltre il Labirinto is doing amazing work for the people who are connected with them. Their big challenge now is to make this sustainable, while at the same time expanding their services.
If they can manage that, there’s no doubt it will be a fantastic model for seamless, lifelong, individual care and support for people like Simone and Ottavio. I’ll be watching with interest to see how things develop.
Friday 5 June – Chilling (in an oven)
Temperatures in the upper 30s in Treviso today, so not surprisingly in the middle of the afternoon I have some of the open spaces in the piazzas almost to myself.
I was right in my first assessment of it when I arrived on Tuesday – it’s a beautiful town, giving the impression of being quite well heeled, with some amazing houses. Old city walls and a surrounding river complete the picture. Recommended!
Saturday 6 June – Venice: the final flourish
I meet the Veneto coordinator for AIFA Onlus, Tiziano Pilotti, this morning along with Marco Massironi and Paola Banovaz – all three are parents of children or young adults with ADHD. As you might expect, many of the issues they face would be recognisable to any British parent in the same situation: the struggle to have the condition taken seriously, the debate over when and how to medicate, and difficulty finding the right support and understanding among the wider family, friends and colleagues.
We have a good discussion, over coffee of course, about the needs of carers and how these could be better recognised and met – especially for single parents. I’m so pleased they were able to take time from their normal Saturday morning activities to share the realities of their situations, and I really hope one of the outcomes of this project will be the chance for organisations like AIFA and those working in this area in the UK to build more and stronger international links. None of us can really afford to work in isolation.
That meeting over, my time in Italy is nearly at an end. All that remains now is to meet up with a friend who happens to be a secondary school teacher in Venice itself. Carlotta stayed with us when she came to Scotland with a group of pupils attending a language school, in the year my daughter was diagnosed with Asperger’s and when life for us had turned on its head. She was the easiest of houseguests who took everything in her stride. At that time we as a family were just taking the first steps of a journey we’re still on, and it felt very much as if things would never be normal again. I couldn’t imagine then how we would ever be in a position to open a bottle of prosecco together in Venice – but I knew if we did, for me it would be proof positive that we’d emerged bigger and stronger from that tough, tough year and that life was getting back on course.
Today’s the day.
I meet Carlotta at Santa Lucia station in the baking heat. We stroll through Venice, where she was at university and where she met her husband, himself a Venetian and now headmaster of a school in nearby Mestre. As we walk, we talk about everything: this project, last week’s elections in Italy (Veneto elected the right-wing Lega party with 60% of the vote and Carlotta doesn’t approve), migration, Scotland’s attitude to independence, Venetian history, languages, our families. We sit like students on a marble step along the Giudecca, watching the world sail by a few metres from our feet. Venice is looking truly stunning. We’re on Italian time, which basically means whenever is quite soon enough, so it’s no surprise when we suddenly notice the time and have to rush to meet Carlotta’s husband and daughter for supper – they’re already waiting for us at the restaurant.
I have to slow her down as we dash across the Piazza San Marco, famously home of the most expensive cup of coffee in Europe, if not the world. “Sorry,” she apologises. “I don’t notice it’s beautiful, I see it all the time.”
We’re heading over a bridge and past a statue when I catch her arm.
“Attenzione, Carlotta.” She pauses and I point at the statue. “Questo sopracciglio – e spettacolore.” This eyebrow – it’s amazing.
For a moment she clearly wonders if the heat has been a bit too much for me. When I explain I’ve used every Italian word I know during my trip except this one, she laughs. We’re still laughing as we go into the restaurant.