When you have multi-sensory impairments, moving from school into the adult world isn’t always easy. Sarah Butler explores this transition stage and how families and young people experience a time of change, uncertainty and possibilities.

If I look back to when I was 16, 17, 18, it was a time of anticipation, and of getting ready to launch into the adult world. I didn’t quite know what to expect, but all around me older people were going to college, working, moving into their own homes, starting relationships, and I knew that I would probably do the same things, in some kind of order. Like most of my peers I had a pretty clear route ahead of me.

In many ways, adolescence is no different for a young person with multi-sensory impairments (MSI). They too are growing up, physically, intellectually and emotionally. They too are coming to the time when they will finish full-time education. But from then on, things are less clear. On society’s part there is no assumption that they will leave home. Nor that they will continue their education, nor contribute to their community. Nor that they will pursue their interests and spend time with friends in their spare time.

So while the move into adulthood can be a time of choice and opportunity for young people with MSI, it can also be a time of great anxiety for both the young person and their family, as they work out what they want, and then try to organise it.

For young people with MSI do have choices. They may leave home and choose where to live, and with whom. For the first time they may be able to choose the activities they do each day, instead of fitting in to a school timetable. They may pursue their education, and participate in community life. But the choices they make are often limited by the resources and imagination of the people designated to support them. It does take imagination: as Peter Clayton of Sense East region says, ‘There’s no road map for life after school for someone with MSI.’

Expressing choice

Though many young people with MSI have communication difficulties, sometimes severe ones, they can all express themselves in some way and so make choices. It is therefore vital that their wishes are fully taken into account during the transition planning process.

Young people with MSI have various means of communicating, most using a mixture of speech, sign, symbols, gestures or body language. Even if they have no other means of communicating, their behaviour in a particular setting may be their way of communicating whether they like it or not.

To help people who don’t know them well to understand their preferences and needs, people with MSI can be helped to build a transition passport.  This might contain a mix of words, pictures and video, explaining how to talk to the young person, what they can see and hear, what they do and don’t like to do and at school and at home, things they can do by themselves, things they need help with (and what help they need), people and places they like, things they want to do in the future, and people they want to keep in touch with. They take this passport to meetings, and with them when they move on.

In recent years, the challenges of the move into adulthood for children with impairments have begun to be recognised by social services and other agencies. So where once – unless a parent took control – very little preparation was done before the age of 18, now there is a formal process, called ‘transition’, which starts when the child reaches age 14. In theory, all children with MSI will go through this process, and it should enable them to move smoothly into adulthood, well prepared, and with the support they need to continue developing.

What is the transition process?

The transition process gives young people with special educational needs the same rights to determine the kind of life they will lead as adults as anyone else. So rather than automatically sending young people to generic adult day services as soon as they leave school as was often past practice, now young people and their families can plan ahead, looking at different options for where they live, what they study, and how their support needs are met.

There cannot be a rigid template for a young person’s transition, as each is an individual. So while one might be ready to move into semi-independent accommodation and to attend a local college with the help of an intervenor, another may prefer to continue to live with her parents, and to do a different activity each day.

It isn’t easy for a young person and their family to decide what they want for the future, nor for them to find out what is available which may not match up with what they want. So to make sure that post-18 provision isn’t left till the last minute, the formal transition process is designed to start at 14, and should include all the people and agencies with a role to play.
Each year, an annual review meeting takes place, in which the child’s transition plan is looked at. The child’s school begins the process and invites the child and their parents, the Connexions Personal Advisor, and social services staff.

The Connexions PA is a specialist in the planning process, though they may not know much about complex needs, they should co-ordinate the process, liaise with the other agencies, and make sure that decisions made in the planning stages are acted upon. The local authority education department and is legally charged with producing the transition plan, although often the Connexions PA actually does the work. If the child has medical needs such as speech therapy, the health authority will be involved too.

The transition process should cover everything to do with moving to adulthood, including independence, relationships, housing, employment, education, money, health, advocacy, leisure and social activities, and transport. Often, though, planning tends to focus on the move to adult social services and to further education.

Sense staff often help families with the transition process. Sense does not have a statutory role, but can provide an assessment of the young person and what they need, work with the family to identify potential placements and provisions, and push the statutory agencies to make sure the transition process is productive.

This, at least, is how transition planning works in theory. In practice it works wonderfully some of the time, but all too often it proves nigh on impossible to persuade adult social services to participate in the planning meetings until a very late stage, or to respond to young people and families’ desires. And while some Connexions PAs are active, involved, and get things done, many are far less effective.

Yet again, then, it often falls to parents to push for what their child needs, to make their voices heard, and to insist that they get the best possible service rather than a belated afterthought.

Really pushing can bring amazing results. Sense’s Jenny Fletcher works with one young man who has 90 hours’ intervention per week, plus activities, plus Jenny’s support. He needs two intervenors at a time because of his physical needs, and has highly individual communication needs. Each day he does an activity of his choice outside his home, riding, a session at the Woodside Centre, or ten-pin bowling, for example. And at home he has variety too: music therapy, foot massage, he shops for food, makes  a smoothie. He lives with his parents, but so that his needs don’t take over their house and lives, he has a studio, a super-shed, in fact, in the garden, where he spends each day.

All this was provided on his individual budget, thanks to a lot of hard work by his parents, with support from Sense and his local support workers. But for some families the right package can seem incredibly elusive, no matter how hard they try for it.

Life story 1

Jenny Keeble

Jenny is 25 and lives at home with her mother Peggy. She has an older sister who lives in a residential unit, and two older brothers. She lost her sight and hearing as a young child and has learning difficulties.

Before Jenny left school she went through a transition planning process, although Peggy says that it was not really very useful: ‘There was no commitment, apart from the person from Sense, to look at her after-school service. I kept saying “But we need to get this organised, otherwise she’ll have left school and there’ll be nothing”.’ Luckily though, Jenny did get the community service that she and Peggy wanted, and when she left school at 19, she was supported by two intervenors provided by Sense and funded by her local authority.

But five months later Jenny had to have major surgery, and funding for the service was suspended while she recovered at home. When she was better, social services refused to fund the original Sense service as they had found a cheaper provider. But, says Peggy ‘It was a disaster. It lasted three and a half years, and in that time we had long spells with no support at all because they couldn’t find anyone to work with Jen. My son ended up doing a lot of it – they employed him but they didn’t look for anyone else to work alongside him so I had to do the personal care.’

Eventually Peggy reached breaking point - she was providing all the care, 24 hours a day, single-handed - and social services finally funded a place for Jenny at the Anne Wall Centre, where she now goes five days a week.
Transition is an ongoing process, though, and this summer Jenny goes before a funding panel again. Should funding for Jenny’s place at Anne Wall be cut this will be a disaster: Jenny, says Peggy, ‘needs to be out, seeing people – she gets very claustrophobic staying at home just the two of us’. And Peggy will have to give up her own commitments, including the deafblind club she runs locally, to stay at home with Jenny.

Peggy is no longer looking for a community-based service, as it proved so hard to find suitably trained staff who would stay and do the job. She wants Jenny to stay on at Anne Wall, where staff are trained and consistent.
Peggy is weary, determined, and frustrated: ‘If you have a child with disabilities you have a life of fighting for them, and it shouldn’t have to be that way. It’s hard enough caring for them.’

Funding

Living costs

Funding is, as ever, a thorny issue, and the source of many arguments between families and local authorities. Many social services teams cling to the concept that people with learning disabilities should attend non-specialist day services. Sense’s priority is to move away from this one-size fits all approach and to ensure that each young person gets the service they need.

Experiences differ greatly from area to area: some authorities are far more generous  or imaginative, than others. Or perhaps they better understand the importance of what they are funding.

A positive move is that social services have been piloting individual budgets, which should enable young people and their families to decide a package for themselves, including both social and health care. However it is too soon to say how much individual budgets will buy if and when they are introduced more widely.

Education costs

 Education is funded by local authorities until the end of full-time education at 16, 17 or 18. From 18 to 25, the Learning and Skills Council (LSC) may fund a young person’s further education. To receive this funding a young person must be assessed as being able to learn and Sense would always contest a case where someone doesn’t receive this assessment. Funding is often given for three years.

LSC funding is flexible, so a young person can attend a service outside their area, bringing their LSC funding with them.  It can pay for a specialist place, or for intervenor support to enable a young person to attend a community college.

From 2010, LSC funding will be transferred to local authorities, who will therefore make educational funding decisions. It is not clear whether these funds will be ring-fenced.

Transitional emotions

However well the transition process is handled, and however good the outcome, the transition to adulthood can be an exceptionally emotionally challenging time for young people and their families. If it goes badly, of course, it can be enormously traumatic.

For families there can be a feeling of being abandoned when their child approaches school leaving age – especially if adult services do not willingly participate in the transition process. And they can also feel overwhelmed by the process: who are the people they should be dealing with now? How do they find out what the options are after school? And how can they make sure that their child gets the best possible deal? Many will already have gone through years of pushing for the right education, and feel weary at the thought of starting it all again.

Unsurprisingly it takes its toll. Clive Fowler at the West of England School says that though their role is to work with parents and learners rather than to take over the process, ‘often parents are so emotionally drained by the process or find it difficult to manage that we play a bigger role.’

Sense’s Jenny Fletcher confirms that transition can be enormously confusing for parents, and that they often feel quite at sea once their child leaves compulsory schooling: ‘Parents don’t know what is possible. They know that they do not want their child to be sat at home with nothing to do for the rest of their lives. Often they’re grateful for what they can get.’

Her Sense colleague Sue Davies adds that for families, it can feel as though they have fallen off the map when their child reaches 18: ‘It’s like going into a black hole, you’ve worked so hard to get everything into place over the school years, and then it’s all pulled away.’ Despite the transition process she still comes across young people aged 17 and 18 for whom nothing has been set up. Understandably, she says, ‘it’s a very emotional time for families, and it can affect their judgement and ability to get what they want from the system. No matter how competent and intelligent you are, as a parent it’s sometimes difficult to sit in those meetings and give your best view.’

The young people too face a challenging time. After many years in school, where they become used to daily structures, people and environments, everything is about to change. This can be disorienting and frightening, as well as exciting.

It may be the first time that a young person is given the opportunity to make decisions about their future, and this is a challenge in itself for them: it can be very hard for young people with MSI to understand just what the options are and what the changes ahead will mean for them.

Making decisions

Each young person’s ability to understand change and to cope with it varies, of course, but their MSI is likely to affect their understanding of how the world works, and so their ability to make informed decisions.

It is vital that they are as fully involved as possible in deciding what they are to do as adults, of course. But sometimes their level of understanding can make this difficult: how does someone who has lived a protected life with perhaps limited experiences understand the concept of independent living?

All young people have a right to develop and move into adulthood, so the transition process marks this important stage for them and helps them to make a smooth move. It’s a long process because they may need time to find out about what is ahead and to prepare for it. And as the young person develops, they may want to change their provision to reflect their own growing awareness and abilities. Or their medical needs or family situation may lead to new provision being necessary. It’s a never-ending process.

Making transition work

The families who have spoken in this piece have had a mixed experience of transition. Professionals involved in the process say that in general the planning process is better managed than it used to be but that it is far better supported in some areas than in others.

They emphasise that working in partnership is what makes all the difference, and that the failure of one agency to pull its weight can disrupt the whole process. Jenny Fletcher, for instance, recently went to a transition meeting where there was no Connexions worker because she had been double-booked by the same school. She says, ‘Silly unnecessary things like that are extremely frustrating and because it’s an annual meeting, it’s another year before you can do anything.’

The biggest problem seems generally to be the pressures on adult social services, which mean that some just never make it to a transition meeting. When this happens, decisions cannot be made and the whole process can grind to a halt. It’s enormously frustrating.

Life story 2

Simon Walmsley

Alexis Walmsley’s son Simon is going through the transition process at the moment. Although they and the social worker both want the same thing, for Simon to move into an independent home, the process hasn’t been smooth: ‘We’ve been messed around by social workers over the years. They never had time, there’s always a more pressing priority.’ She likes Simon’s current social worker, but says, ‘I’m very disappointed because our social worker can’t come to Simon’s review meeting. It’s scheduled for a morning in Manchester (they live in Hampshire) and she has no budget to stay over so she can’t come. I’ve suggested a video conference call because we have no other meetings planned. I’ve a sneaky feeling we ought to be doing something else: we’ve just over a year to go now and we need to get the house organised. We need to start making waves again. It’s wearing, you can’t ever be complacent, if you are it always comes back to bite you. It seems so unfair that we have to be so pushy.’

Moving on

Despite the frustrations, plans do get made, and young people move on to a new phase of their lives. The way this move is handled is extremely important: the young person needs to prepare for their new life, and the staff who will work with they must also prepare so that they understand as much as possible about the person they will be working with.

With the right level of support and sharing of information, there’s every chance that a young person’s transition into adulthood will go smoothly and that a new world will open up for them. When it all comes together there’s enormous relief all round, for families, teachers, Sense outreach workers, and for the young person themself.

With all these meetings, funding issues, logistics, forms to fill, it can be easy to forget that at the centre of transition is a young adolescent, learning about themselves, and wondering about their place in the adult world just like any other. It’s a confusing time for them, and it’s crucial that everyone involved in the formal processes of transition remembers this, gives them all the support they need, and listens to them.

Helping young people to communicate

If you are interested in helping young people with MSI to communicate two events may appeal:
‘Quality Communication: Maximising opportunities for people with multi-sensory impairment’, University of Northampton, 12-13 September 2008.
For more information contact Patsy Hollingum: Tel: 01604 893 447 | Email: email patsy.hollingum@northampton.ac.uk

‘Co-creating communication with persons with congenital deafblindness’, The Royal Armories Museum Leeds, 8-11 October 2008.
For more information ring Lorraine Cosgrove: Tel: 0845 127 0060 | Email: conference2008@sense.org.uk

Resources

www.myfuturechoices.org.uk
www.skill.org.uk
www.mencap.org.uk