THE CHOICES FOR YOUNG ADULTS BORN DEAFBLIND.
A challenging time
Leaving school and making plans for the future is an important time for all young adults and parents. This is especially true for people who are born deafblind and their parents and carers.
This can be a worrying and stressful time for the family, with a lot of difficult questions to answer. Where will the young person live in the future? What will they do with their lives? What will they do when I'm not here? Where can I go for help?
This process often starts when the young person is about 14, with the `transitional review' at their school. This aims to help the young person and their parents or guardians to plan for their future, and brings together the professionals who have expertise in different areas. Those present should include representatives from further education and social services in order that plans for post-school provision can begin. The review plan should adapt the programme at school and pay attention to the changing needs of the young person. It should also indicate to social services and the careers department that plans need to begin to be made for post-school support.
Most deafblind young adults will need a lot of support from their parents and carers when they are thinking about their plans for the future. This may be the first time that they have been asked about their plans and what they would like to do.
Many deafblind young adults may have strong ideas about what they would like to do in the future. Some may need help to make these decisions, and so it is important that they are supported by people who know them well, who know about their skills and strengths, as well as being realistic about the choices available. Others will need parents or carers to make a decision on their behalf.
WHERE TO GO FOR HELP
Before making any decisions, it is important find out as much as you can about what is available. This factsheet describes some of the main choices, but it may also be a good idea to speak to one of the Sense's Regional Advisers who will know about the services both in your area and nationally. See the addresses and contact numbers at the end of this factsheet.
There are a number of other places you can go for help, depending on
what you need to know:
However, it is important to point out that services do vary a great deal from area to area, and you may need to be persistent to get the right support and services. There are many options and decisions to make and this factsheet describes some of the main ones.
For people who are deafblind some form of continuing education is very important. It means that they can continue to develop their communication and other skills and ability to find out about the world around them. Many young people, because of the developmental delay they have experienced will be eager to continue to learn in both a formal and informal environment.
Staying on at school
Most special schools cater for students up to the age of 19. Often schools will have a specific `further educationí department for students who are over 16, and part of their role will be to help the individual plan for the future. This might include making links with local provision - for example, a local college, day service or work placement, and providing specialist advice about post-19 support.
Rather than remaining at the same school, another option for the young
person might be to transfer to a more specialist school when they are 16
and to stay there until leaving school at 19. This can provide an excellent
basis for continuing education, and some schools now provide a programme
for students up to the age of 24 years.
Further education (FE) colleges
Most major towns have a further education college, and these will often provide courses designed for people with `special needsí. Often these will cover a wide range of subjects from basic literacy and numeracy skills to self advocacy, communication classes and independent living skills.
Some young people may be able to take part in mainstream courses, perhaps with extra support for their sensory impairments provided by the college.
The Specialist Careers Advisor, based in your local authority, will
have information about the courses available in local colleges, and the
colleges will provide more details about their courses. Many have open
days when you can visit, find out what is on offer, and see how other students
Even if a traditional `careerí may not be suitable for the deafblind person, the Specialist Career Service should be able to help with advice about finding appropriate sources of funding through the Further Education Funding Council (FEFC) or Higher Education Funding Council (HEFC).
Accommodation within further education
Another option is that the deafblind person may decide to undertake
some form of further education in a residential college where accommodation
is provided automatically. Contact Sense's Educational Advisory Service
to find out what is available.
PLANNING FOR THE FUTURE
Around this time, most families and young people start planning for
independent life in the future. For some young people it may seem like
a good time to begin living away from home, as part of their continuing
education towards an independent life.
Living with the family
Some deafblind people may prefer to continue to live at home with their
family, or to move back there after residential school. If a deafblind
person does live at home extra support should be available to support the
family and young person in developing an active life. A `home support packageí
Some people will need a complicated package of support; others may only need limited help - it all depends on their circumstances and needs. To find out what is available locally approach your local social services and ask for a full Community Care Assessment.
Living away from home
Other deafblind people may prefer to live away from home. There is an enormous variety of accommodation, so it is important to choose something that provides the right level of support and facilities. There are a range of people who provide residential accommodation including local authorities, independent organisations and many charities.
A lot of residential provision is now within small group homes - often houses in the local community shared with a small number of other people (from as many as 8 other people, to just one other). Sense runs group homes around the country that offer an excellent staff to resident ratio.
Sometimes it is possible to develop a home like this around the needs of one individual. More commonly, an individual will move into an existing home that provides an appropriate level of support. Some accommodation may also be available in larger establishments - again provided by a range of different organisations.
Not all the different types of accommodation will be available in every area. So in some cases it may be necessary for someone to move further away from their home area, perhaps to somewhere which provides a more specialist service - for example, a residential service provided by Sense. Sense would like to develop more local services but this is not always possible.
Living in supported or semi-independent accommodation
Some deafblind people may prefer to live in a supported or semi-independent
flat, either alone or sharing with one or more people. It may be that support
can be arranged for particular times of the day. Some people choose to
live in sheltered accommodation with some support provided by a warden.
Who pays for residential care?
The local Social Services Department (SSD) will usually pay for residential care, regardless of the type of accommodation chosen. This isnít automatic however, and the SSD will have to agree that the accommodation proposed is the best option. They should thoroughly assess the individualís needs, including the type of accommodation that is suitable for them before making a decision. The needs and views of the deafblind person and/or their parents or guardian are central to this process.
This assessment is called a Community Care Assessment, and the SSD are legally obliged to assess anyone who asks for it. If the assessment identifies particular needs, then the Social Services Department have a duty to `arrange suitable services'.
Your Sense Regional Adviser can provide support and advice on local
and national Sense residential services, other services, and some general
support on how to get these services.
Day Services in the community
For some people, attending a local day service will be an option. There
are a range of day services from sheltered workshops to day centres, provided
by local authorities, and voluntary organisations such as Sense, Scope,
and Mencap. In some areas independent companies are also developing day
services, which should have been inspected by the social services department
to make sure their services reach a suitable standard. It is a good idea
to find out about all the options in your area. Local authority day services
have a variety of names including:
Sometimes, specialist day services will be available - specifically designed for people who are deafblind. But more often local services will be for people with learning disabilities. If so, it is important to make sure that the service can meet the needs of someone who is deafblind - particularly in relation to an individualís communication needs.
Does Sense provide any day services?
Sense has a number of day centres and home-based services in various parts of the country which can provide daytime educational and vocational support. Each service will be tailored to meet the needs of the individual, and to help them make the most of local community resources. All Sense services will emphasise communication and choice-making as one of the foundations of any individual's development.
It will often be possible to put together a package of daytime support,
using a range of different services, as the best way to meet the deafblind
WHAT OTHER SUPPORT IS AVAILABLE?
People who are deafblind are entitled to claim welfare benefits such as Disability Living Allowance, and Income Support. It is important to claim. To find out about benefits contact your local Benefits Agency, or Sense Regional Adviser. Alternatively, contact the Royal National Institute for the Blind on 0171-388 1266 and ask for their publication 'Your Benefit'.
Parents may find it useful to obtain support from other people who are in similar situations. Ask your Regional Adviser about the Sense Branches, or other local support groups.
It is important to look at the leisure choices that may be available. Many people who are deafblind can enjoy a wide range of leisure activities - from swimming to canoeing, horse riding to rock concerts. Ask your Regional Adviser about what is available, or enquire at your local library.
Local libraries are a good place to find out about local clubs and groups.
There are also organisations who can offer information on accessible venues
and activities; for example, Artsline in London.
Local Deaf Clubs can also provide some friendly support. The Friends of the Young Deaf (FYD) for example have very active social calendars, and are a good resource for local information. Many of these groups use British Sign Language (BSL), and people are usually willing to teach and share their skills.
There are a range of sporting groups and facilities in every town and
most of them will welcome new members. Your local Sense Regional Adviser
can help you find out what is on offer in your local area.
This factsheet was produced by Sense:
and it is from Sense's Web site at, http://www.sense.org.uk.