The transition period for young people with Usher

Francesca Wolf explores the challenges and rewards for young people with Usher as they move into adulthood – and offers some guidance about getting the best out of the opportunities that are available.

What does it mean to become an adult? As well as all the physical and emotional changes, for many people it means leaving school, forging our own relationships, living more independently, perhaps further study or employment, taking responsibility for our finances and our lives.

This journey can be exciting, but it is neither quick nor seamless. Just as toddlers learning to walk need a steadying hand, so do young people moving towards independent life need support as they learn to stand on their own two feet.

Adolescence is often a turbulent period, but young people with Usher face additional challenges – especially if sight begins to change. Those with Usher 1, who have been profoundly deaf from birth and have balance problems, may start to feel cut off from the Deaf community when vision problems kick in. Those with Usher 2, with partial to severe hearing loss, may not even be identified until they have problems with nightblindness or lipreading, and those with Usher 3 face a double whammy if sight and hearing diminish quickly or at the same time.

In recent years Usher has been identified at a younger age. When this happens, cochlear implants may open doors for children with hearing impairments to the speaking and hearing world. There is evidence, too, that early diagnosis and openness help children adapt to their changing circumstances and become resourceful.

But Usher is a variable condition. When diagnosis occurs in the teens or twenties it coincides with other major changes and can be a challenge to someone’s developing sense of identity. Shock, denial, anger and grief are common initial responses. Relationships with friends may need to be renegotiated and some activities move out of reach – including learning to drive, a cherished rite of passage.

Fear for the future is common, and most young people will have a lot of questions and concerns: will I get a job? Have friends? Live independently? Find a partner? Usher is a rare condition with an uncertain path forward and this can make it hard to find firm ground to stand on - let alone move forward.

It is remarkable, then, how many young people with Usher do successfully navigate the transition to adult life and there are many inspiring stories.

The transition plan

Most children diagnosed with Usher have a Statement of special educational needs. Eileen Boothroyd, Sense’s Education Officer, says, “A statement is important as it guarantees a level of protected support, based on each young person’s identified need.” For children with special educational needs there is a legal duty on local authorities to start a transition plan (TP), covering the years 14 – 25, in the year they are 14. It is subsequently reviewed each year to see how the child is progressing.

Usually the school begins the transition process. The child, parents, Connexions Personal Advisers, staff team and social services are invited. There may also be representatives from the health authority and other agencies.

At its best the transition plan is holistic and covers all aspects of a young person’s move to adult life - including independence, relationships, further and higher education, training, employment, finance, health, housing, leisure and social life. It should address the young person’s hopes and goals for the future and how best these can be met as he or she journeys into adulthood.

A transition plan is important in that it places young people at the centre of the process and ensures that they are involved at all stages so they can express their needs and aspirations, understand potential changes, and make informed choices about options. Family, friends and professionals need to help them realise their wishes.

Sometimes the process goes smoothly with all parties working together, but this is not always the case. Connexions PAs vary in their knowledge and understanding of the academic potential of young people with Usher. A further complication is that Usher is a changing condition so support needs to alter – sometimes rapidly.

Moreover for some parents, the trauma of diagnosis affects their ability to face Usher and address the challenges it presents. This means that their children may lack a Statement or knowledge of their condition. Obviously this makes it very difficult to put together an effective transition plan or plan positively for the future, and if children don’t have a Statement planning tends to be more ad hoc.

But even the most involved parents often have a fight on their hands at some point. They need energy, forethought and knowledge. They need to encourage their son or daughter to talk about what’s important to them. But they also need to tread a fine line between being supportive and over-protective - which can undermine a young person’s confidence and growing independence.

Quite a challenge. The transition process is complex and in many cases it helps to have support from an outside organisation such as Sense who can give advice. They also publish a useful guide called Getting a Result! to help young people and their families understand and participate fully in the process. The pack includes key questions to ask the Connexions Personal Adviser.

The transition plan is reviewed every year. By the age of 18 the young person is considered an adult and transfers to adult health and social services. An assessment of education and training needs should be carried out if it hasn’t been already. Connexions can continue support until the age of 25.

What happens after school?

All young people with Usher should have an assessment of their education and training needs as they approach school leaving – including those without a statement or transition plan. The responsibility of the local authority, this assessment is usually coordinated by the Connexions PA and is passed to the college or other subsequent provision. It should be holistic, person-centred, and involve the individual, family and appropriate professionals. As well as education and employment goals it should cover sensory and mobility aids, transport, health, social and care needs.

By 2015 it will be compulsory for all young people to stay in education or training until the age of 18. Although some young people with Usher do now leave at 16, most benefit if they stay in education until at least 18. "Having the time to consolidate learning can take longer so it is important they get the chance to stay on,” says Eileen Boothroyd.

Post-school options include mainstream or specialist colleges, work-based learning, university, volunteering and getting a job. Some young people take a gap year or have a period of unemployment. This gives them the space to take stock, consider the future, gather energy and have different experiences.

While for many young people staying at school until 18 is the best option, others choose to go to college. Further Education is for people aged 16 and over, but it doesn’t include degree level studies. FE takes place in college, sometimes in the workplace, and it is also possible to study at home (open or distance learning).

Further education colleges have a range of courses which often include work-based courses (NVQs, Vocational GCSEs, AVCEs); academic courses (GCSEs, A levels, Scottish Highers); basic skills; access to higher education; continuing or adult education and specialised Diplomas. Many offer vocational training programmes such as Apprenticeships or Entry to Employment which may be split between the workplace and college.

There are also some specialist colleges in the UK - many residential - which offer a range of options.

Colleges have information on their websites and a prospectus as well as a staff member responsible for disabled students who can be contacted for additional information about support. Prospective students need to consider what they want to do, what they are good at and their support needs.

Many young people with Usher do progress to college or university and gain diplomas or degrees. This can be a positive experience that develops confidence, skills, independence, friendships and also opens doors to employment.

But there are questions right from the start. What course? Which college or university? Which offer good support? Which have Usher-friendly accommodation? As well as looking at written information, it is always a good idea to attend open days in order to meet staff and view sites and accommodation at first hand.

Richard Linley, a specialist in Usher and post-compulsory education and training, says awareness of Usher is very variable in further education colleges. A recent study identified several students with dual sensory loss who had been categorised as visually impaired. “People sometimes slip through the cracks,” he says. “One student needed a signer because she couldn’t hear the lecturer. Another could not see him.”

Varied challenges

From this April, funding responsibility for students in futher education colleges passes to local authorities. It is advisable for young people and their families to get independent guidance well in advance about eligibility for financial and other support.

Those going on to university are entitled to the Disabled Students Allowance (DSA) and should be assessed as soon as getting a place. RNIB Assessment Centre works with Sense in assessing dual-sensory impaired people for DSA, but there is a lack of UK-wide assessment centres with Usher specialists.

Prospective students should contact a university’s Disability Officer before starting to discuss needs. Although some officers promise more than they can deliver, others are very good and provide valuable advice information and support.

This support is vital as students with Usher face varied challenges. Lighting is often an issue as is computer access or lack of note-takers. Managing changing visions is harder in unfamiliar environments and accommodation layouts may be hazardous, and individuals’ needs do alter. A student who found he occasionally needed a communicator guide at night was told “ Two months ago you could see fine. Why do you need this now?” Another began struggling to understand his interpreter in the lecture hall.

Happily this ended well, he flagged up the problem with the university, Sense was contacted, and it turned out that the student’s field of vision had significantly narrowed. The signer changed position and started using Visual Frame Signing. “It was a learning curve for everyone,” says Liz Duncan.

Usher-related changes may also make social life more tricky. Communication can be a challenge, especially in groups and student venues, often noisy and dim, are not the most Usher-friendly environments.

“Many don’t admit their sight problem because they want to fit in,” says Tamsin Wengraf, Sense Usher Information and Outreach Officer”. But it’s vital to educate fellow students as well as staff. Students with Usher need to tell others about problems they have with RP, balance and hearing loss so they can request and get the help they need.”

Support in the community

Young people with Usher are also entitled to support in their daily lives and at 16 Social Services should contact them for an assessment of their needs. Anyone with dual sensory loss which affects mobility, communication and/or access to information is legally entitled to support. It’s not essential to be registered, but services are more readily available if you are.

Assessments should be person centred, and cover human support, such as communicator guides as well as help at home and equipment like additional lighting. If vision or hearing change you have the right to request another assessment.

From the age of 16 a person can receive support and payments directly rather than through their parents. Either the local authority arranges the service or it gives Direct Payments so young people can arrange and pay for their own support. This gives them the chance to control their support in a way that wasn’t possible in the past.

However, as with transition planning, theory and practice sometimes part company. Liz Duncan, Head of Acquired Deafblind Services at Sense, says “Local authorities are under huge financial pressure and vary enormously in knowledge and understanding”.

She cites a case where it took three years to achieve a proper direct payment package for a young man with Usher. Despite the fact that he’s a BSL user with very poor sight he was allocated just one hour’s support a week. Dogged campaigning eventually led to 27 hours’ flexible support. But the council still haven’t provided enough money, because a skilled signer costs far more than basic care. “So we will continue to challenge the local authority and request more signed support,” says Liz.

Social life

Interpreters, intervenors and communicator guides should not be seen as optional extras but can make all the difference between participation in the community or isolation at home. A communicator guide, for example, can support a young person to take part in all sorts of leisure or social activities.

For there is a risk that some young people will lose confidence and become depressed or withdrawn. Sometimes this happens in early adulthood when formal education finishes and there is no longer daily contact with people, or a job ends and time becomes less structured.

And yet, despite all the challenges, many young people with Usher do thrive and find their way in life. To do this, though, they need information, ongoing support in the community, easy access to counselling, and contact with people who have been – or are – on similar paths.

Time after time young people with Usher say that gaining insight into how others have managed their social life, education and jobs, helps them understand their own situation and how to improve it. Social networking sites such as Facebook, Bebo MSN and Twitter are useful here and there are a range of networks and groups that can help people keep in touch and support each other.

Different stories

There are few statistics for young people with Usher and each person’s story is different. Those who do best usually learn to fight their own corner in the end as parents stand back a little.

There are some brilliant, inspirational young adults who have achieved a great deal. People with Usher are often smart, resourceful, resilient, adaptable, “can do” individuals although they face significant obstacles in society - much of it due to lack of awareness about the condition and its implications. Both family and professionals need to become more aware– for getting the right support at the right time from the right people can make all the difference.

Further information

Getting a result! is a Sense publication aimed at helping families participate in the transition process. Contact Eileen Boothroyd on 0207 0149 9328 or email eileen.boothroyd@sense.org.uk for a copy.

The National Usher Team at usher@sense.org.uk, tel: 01372 840300

Skill: National Bureau for Students with Disabilities, tel: 0207 450 0620 or www.skill.org.uk has informative booklets covering education, work and benefits

Useful websites: www.sense.org.uk/usher | www.directgov.uk | www.usherlife.co.uk

With thanks to: Eileen Boothroyd, Liz Duncan Shannon Faz, Wendy Faz ,Marylin Kilsby Richard Linley, Steve Rose, Nick Southern, Tamsin Wengraf, Monika Wengraf

Story 1

Nick Southern

“I found out I had Usher when I was 16. I became worried about my future: `What will happen to me?’ I thought.

I had been deaf from birth but eye problems started in my early teens when I couldn’t see in the dark. I didn’t enjoy school – a residential school for deaf children. Communication was difficult and there was bullying.

Afterwards I went to the College for the Deaf in Derby. This changed my life. The staff and students knew about Usher and I learned to sign fluently in BSL. The college supported me in my Diploma studies at Chesterfield College. I loved this course although I didn’t get involved in the social life, I felt apprehensive about going out at night.

I went straight on to a Fine Art degree at Reading University but with hindsight think I should have taken a gap year to develop my independence. My parents hadn’t encouraged this. At university I still feared going out at night as I’d seen reports about muggings and I felt vulnerable as a person with Usher.

Support was minimal then and I didn’t know my rights. My interpreters were unqualified and often misunderstood what was being said.

In my early 20s, I met other people with Usher for the first time through friends of friends. I joined an Usher group and from other Usher people I learned that you can cope, find ways round things, such as tactile communication and communicator guides.

After university I got work experience at the Tate through a charitable organisation called Workable and worked in the conservation office. Then I went to the US for a year and taught myself about websites from scratch. I made mistake after mistake!

Returning to England I applied to numerous jobs. I had numerous rejections. But then, I got a job at Sense - and have been here ever since!

Nick works as Sense Web and Intranet Coordinator

Dual Sensory Clinic for over-16s
There is a Dual Sensory Clinic at the National Hospital for Neurology and Neurosurgery in London where specialists in hearing, sight, balance and genetics give a combined assessment in a single appointment. Individuals must be 16 or over and referred by their GP. It’s a useful opportunity to discuss specifics and the overall situation which can help inform other choices. Tel: 0845 155 5000.

Story 2

Tamsin Wengraf

Tamsin Wengraf works as Sense Usher Information and Outreach Officer. Although she enjoys her work and life with her husband and children, it hasn’t all been plain sailing. “There have been barriers and I had to fight,” she says.

Tamsin is deaf and partially sighted. The diagnosis of Usher 1 at 14 was, she says, “In a way a relief, because schoolfriends had teased me – I was clumsy and had a zig zag walk.” By the sixth form she was struggling to lipread teachers. She lost confidence, then dropped out.

Tamsin moved to a specialist Deaf college linked to a mainstream college where, helped by note-taking and tutorial support, she gained more exams. “ I coped better there, made friends, no longer felt like a second class citizen,” she says.

Tamsin then gained a National Diploma in Business and Finance at Epsom College. She felt quite lonely at this mainstream college and realised finance wasn’t her vocation. So, hearing about a BA (Hons) Community and Health Studies Degree, she applied and, aged 22, went to Chester University.

“I was ill-prepared, thrown in at the deep end and very unhappy at first. The lecturers knew nothing about Usher and the note-taker wrote down the wrong things.”

So Tamsin decided to arrange her own support. She told fellow students she needed a notetaker to “be my ears” and give her full access to the main points, discussion and questions asked. It took her two years to find three good note-takers but the result was worth it.

After gaining her degree Tamsin did voluntary work then travelled round the world with deaf friends. They visited Hungary, Bulgaria, Rumania, Turkey, Iran, Pakistan, India, Thailand, China, Nepal and she spent a year working in Australia.

“I realised working with deaf people was my niche,” says Tamsin. “When I got home I spent seven months looking for a job and then got one as an advocacy coordinator for a deaf organisation. I went on to work in this sector. Access to Work provided support, including interpreters, large screen computers or taxis when working late.

”Everyone with Usher is different and my RP degeneration has been slow,” she adds. “Looking back, I wish I’d had more information as it empowers you. It enables you to adapt in advance and be assertive.”

Story 3

Monika Wengraf-Hewitt

Monika Wengraf-Hewitt, Tamsin’s mother, says that although the Usher diagnosis was a terrible shock, she allowed Tamsin her freedom. “I worried about her going out at night because she couldn’t see people coming towards her, but I didn’t stop her.” When Tamsin went travelling for two years, it was nerve-wracking: “There were long periods of no communication when they were in remote areas. I worried they might be kidnapped, have their van stolen, that other people might take advantage.”

Joining them in China was, says Monika, “… an eye opener. They were so resourceful and could communicate with everyone through signing. It showed me how they were actually more able in some ways than me.”

Back in the UK things were tougher. “Companies were not that interested in employing disabled people and it took time for Tamsin to gain confidence. But once she gained work she moved forward in leaps and bounds. She has become more demanding as she’s got older – now she knows and demands her rights.”

Employment

Sense National Usher Coordinator Marylin Kilsby says, “ When young people start thinking about careers I ask: ‘What would you like to do?’ Very often they can do it.”

Many people with Usher have good jobs in the widest range of fields – from IT to physiotherapy. Marylin Kilsby says that “ success stories abound” and there are only few jobs that are not possible, such as those involving driving or colour vision.

But this isn’t to deny that the employment market is tough today and most young people worry about jobs and careers. Sources of support and advice include Connexions and Disability Employment Advisers at Jobcentre Plus. It helps if they liaise with Usher specialists, such as at Sense. University and college careers advisers and online sites are also useful.

Young people with Usher have additional concerns because of uncertainty about changing visual needs. “ But don’t close doors, ” says Tamsin Wengraf. “Think long-term, be open and flexible,develop multi-skills. This prepares you for the future because your condition will change through life. “Recently, for example, she advised a newly diagnosed 17 year-old to continue his sports coach training whilst also developing other skills.

Sometimes deteriorating vision does make a job impossible. A bricklayer in his early 20s had to leave when accidents became frequent. But in other cases a slight change of role solves problems. A support worker in a school for disabled children considered leaving because she couldn't see very young children around her feet. However, she transferred her skills to looking after 10-11 year olds - whom she could see.

Holding onto a job sustains an identity and social contacts as well as providing income and satisfaction. But it can be tiring – a young lawyer with Usher 2 described balancing work and family life as “walking a tightrope”. Going part-time enabled her to continue without getting exhausted.

Know your rights

Most employees are entitled to support under Access to Work and the scheme also offers support to jobseekers such as interpreters at interviews.

Tamsin advises people to contact the scheme for a workplace assessment as soon as they start work. Sense or other professionals can provide support. “ It’s important to educate employers about what you are entitled to,” she says.

Some young people don’t want to stand out by revealing sight or hearing problems to employers and colleagues. “But support should reduce stress so you are more likely to get along with peers and do your job well,” says Liz Duncan. “In the past the scheme lacked understanding of deafblind people’s needs and was hampered by bureaucracy, but the service is improving.”

Sometimes simple changes such as better lighting or an occasional interpreter make all the difference in keeping a job. Or a taxi to and from work if it’s dark or there’s no public transport.

Information about jobseeking and Access to Work is available from Jobcentre Plus or the Government website: www.direct.gov.uk

Benefits

It is important to get advice about benefits before a child’s 16th birthday or you could lose money. Benefits people with Usher may be entitled to include Disability Allowance and Employment and Support Allowance.

For information contact a Benefits Advisor or go to the government website:
www.directgov.gov.uk/en/disabled

Housing

Most young people want to move away from home. But it’s often a battle for single people to get somewhere suitable near family and friends. Options should be addressed in assessments, but aren’t always.

From the age of 17, they can join the local housing register. Housing associations may also be able to help. Having a disability such as Usher makes it slightly easier to get housed but there’s no automatic right. Contact Sense for more information.