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.