Eléonore, Felicity and Joffy are in their early 20s, and each have just left home. There’s nothing unusual in that, except that all three are multi-sensory impaired: what’s it like, leaving home when you need lots of support? SJ Butler spoke to families and professionals who have experienced this first hand.

No two deafblind people and no two families are alike. But Eléonore, Felicity and Joffy’s stories show that there are many similarities in the challenges they and their families have faced – and in the positive experiences too.

For the parents of a young child with a multi-sensory impairment, it may seem hard to imagine that one day they will leave home. At home, they are understood, loved, and safe – who else can look after them so well?

But as their child moves towards adulthood, families naturally begin to think about the future, and the young people themselves may feel a need to live as independently as they can, control their own lives, make new friends and try new experiences.

Josie Bell is Sense’s Family Liaison Worker, supporting the families of deafblind people in Sense’s residential services. In one family she works with, the young deafblind woman has for years been collecting the things she’ll take with her to her own flat – and has very much led her family towards helping her to leave home. That doesn’t stop her family worrying, but her desire for independence is clear and they know that leaving home is the right thing for her.
In another family, a deafblind young man was contented at home and had no concept of what it might mean to leave, but his family needed to consider his future and to make sure he would always be well looked after. For them, the challenge has been that they would have to make the decision for him.

Josie says that although this young man was unaware of the possibility of leaving home, ‘children become adults – they outgrow us’. Just like any other young person, it was time for him to set up a life with people his own age that would share his interests, and have the energy to try new things with him as well as support him. Despite his family’s worries, he’s happy, and leaving home has motivated him to become more independent.

For this young man’s family – as for many others – the main reason they decided to look for a home for their son was to make sure that his future was secure. They wanted to help choose where he lived, and who would look after him when they were no longer able to do so. They needed to be reassured that without them he would still be safe, cared for and happy.

Eleonore, Felicity and Joffy left home either straight from school, college or shortly after, so their transition to adult life away from home has felt like a natural progression.

This isn’t to say that the process of making the decision, finding the right home, obtaining funding, and setting everything up has been easy – no one would pretend that.

Nor has the emotional journey been gentle: families worry, have sleepless nights, stagger exhausted from battle to battle with funding bodies, deal with all the rest of family life, and above all, feel guilty that they’re saying they can no longer care for their child.

Whenever a family decides it’s time for their child to leave home, it’s difficult.

First and foremost, choosing a new home is a major decision. It’s also a long, slow process. Ideally, the first conversations start as part of transition planning at school when the child is 14. However, in practice, many young people leave school with no plans in place, perhaps because they and their family want more time at home together, or can’t imagine their son or daughter being able to leave home. Krystyna Cieslik, Sense’s Assessment and Advice Officer’s advice is simple: ‘Go out there, have a look, meet people, see what the options are.’

Sometimes, a family never does feel it’s the right time for a deafblind person to leave the family home and the result can be a crisis when parents become ill, or die, leaving their deafblind son or daughter in the care of social services, with no one to fight their corner. In one go, they lose the people they love, their home, and the support they need. In order to avoid this, it’s worth making plans, even if it’s not yet time to put them into action.

When they’re ready, with a plan in mind, the family can apply for funding and start to look for a suitable home. Sense will walk with a family every step of the way – providing not only advice and information, but also a shoulder to cry on, and a formidable presence when negotiating with funders.

Funding, as ever, is one of the greatest challenges. Josie Bell says, ‘Every family I know has had a funding battle. For very few its plain sailing and I can’t think of one where it went to plan, especially now.’

At a time when local authorities are under ever increasing pressure to cut their budgets, it’s no surprise that they often try to find the cheapest options, but this can lead to the deafblind person receiving inadequate support or to being placed in a non-specialist home, perhaps with much older people. Local authorities vary, says Josie, and some place little emphasis on enabling a person to lead an active life: ‘If they can get away with a basic sort of care package, which literally means that people are fed and clean and dry and safe, then that will do.’

When negotiating funds, most local authorities will start at the lowest level, but it’s clear that when they already know a family, and Sense is involved, there’s more chance they will increase their offer. It’s worth reminding them of the Deafblind Guidance, because it ensures that a proper specialist deafblind assessment is carried out. Some families have had to resort to legal action.

Korrina Campbell, Sense’s Head of Business Development, is targeting local authorities, helping them to identify young people as they approach school leaving age, and – armed with the young person’s housing options plan – to look ahead to the accommodation they will need.

She has a national view so, for example, can help three college friends to find a home together, or another to find a flat near their parents. Above all, she says, it’s about finding the right home for each person, rather than slotting them in where there is a vacancy.

Finding a home in the right place has always been a challenge for deafblind people and their families, so this summer Sense began working with Golden Lane, a national housing association specialising in homes for people with learning disabilities, which opens up many more options for people looking for supported living.

Once the deafblind person and their family have found the right place to live, there’s still often a great deal of preparation to do. The key to success, says Josie Bell, is plenty of communication and collaboration between the family and the staff in the new service: ‘That’s what really works, and what makes a difficult process bearable.’

Karen Elsbury, who manages Sense’s supported living projects, says that it’s helpful for families to know that they’re not closing the door on their child the day they leave home – they can always return home. Also, she says – unlike children who go away to university or to a new job - a deafblind child whose unhappy is far less likely to hide unhappiness: they will communicate it, quite possibly through strong behaviour. And if this happens, the team will find out what the problem is, and address it.
Even knowing this, when a disabled child leaves home, it’s a time of transition for everyone in the family. No matter how happy the young person is in their new home, almost every parent feels guilty. Krystyna says, ‘Unlike another young person who makes their own choice to leave, you’re making the decisions on their behalf. How do you know what the right decision is? You feel as if you’re pushing them away and you feel bad about that.’

But it is a positive move - Eléonore, Felicity and Joffy are thriving in their new homes. And while it’s true that after years of being fully involved in every aspect of their son or daughter’s life, parents’ feelings of responsibility may never fully go – their relationship with their child will change. Their role as carer will fade and they can build a parent-adult child relationship where each can simply enjoy the other’s company.

Find out more

Sense’s Information and Advice team | The first point of call when thinking about leaving home. 0845 127 0066 Info@sense.org.uk

Supported living – making the move, Alicia Wood and Rob Greig, NDTi, 2010, www.ndti.org.uk : Lots of information about different ways to fund supported living.

Leaving Home, Moving On, Nigel King and Maurice Harker | The Foundation for People with Learning Disabilities, www.mhf.org.uk : clear guide for young people and families

Housing Options I Free factsheets about all forms of housing www.housingoptions.org.uk

Golden Lane Housing I Ground Floor, West Point, 501 Chester Road, Old Trafford, Manchester M16 9HU; 0845 604 0046; enquiries@glh.org.uk; www.glh.org.uk

NHS Continuing Healthcare | http://www.nhs.uk/chq/Pages/2392.aspx