British Organizations For Deafblind People.


Bristol Royal Society for the Blind Dual Sensory Loss Service.


BRSB now provide information services for deafblind people and have a reference library of over 70 topics which they can make available on request in any language or format. They also run a deafblind awareness and profile raising service in the City of Bristol - In 1998 they targeted banks, public services and shops; In 1999 they are targeting GPs and hospitals, schools and youth organizations and residential and nursing homes. They also have a Guide-Communicator Service for deafblind people in the City of Bristol and from April 2000 will supplement that with a volunteer Guide-Help scheme.
 


Carnbooth School Provides education for deafblind children from pre-school to 18+.
 
CACDP Development of Deafblind Courses.
  The CACDP project is to develop standards for visual Frame signing, and hands-on signing, and to develop an examination structure for interpreters for deafblind people.

CHARGE Family Support Group.
 


How it all Started.
The CHARGE Family Support Group was set up in 1987 when a doctor passed the name of Sheila Draper onto other families with a CHARGE child. Sheila had expressed that she wanted to meet other children like her son, Gregory, and so the Family Support Group was formed.

Keeping in Touch.
The aim of the group, as Sheila saw it, was for parents to be in contact with each other, either by letter or by telephone, to offer encouragement, support and to share information. She decided that a newslefler would be an efficient way to keep families informed and up to date The first issue was circulated to 10 families in November 1987.

Currently the newsletter is sent out 3 times a year to almost 200 addresses and whilst some are sent to professional organisations, the majority go to families throughout the UK and a few in Europe.

Getting Together.
Whilst attending the Sense Family Centre in Ealing, London, with her son Gregory, Sheila was offered its facilities as a meeting place for the families that she had made contact with. So it was that the first gathering of CHARGE families took place in 1988 with 9 families taking part. These summer meetings in Ealing have become an annual event. Over the years there have also been get-togethers in Birmingham, Manchester, and Cambridgeshire as the Support Group continually searched for venues that would meet the needs of families nation-wide. Currently there are annual meetings at the North Staffordshire Adventure Playground in Newcastle-under-Lyme, at the Sense Family Centre in Woodside, Bristol, as well as the day at the Family Centre in Ealing.

Getting Involved.
Membership of the group is free. Now a registered charity, the group relies on donations for its continuing existence. The membership covers the very wide spectrum of CHARGE and includes children of greatly varying abilities and disabilities. Some parents of deceased children have remained as members and some of these are still actively involved.

New families are welcomed to the group, sent articles that have been written about the condition and given a mailing list of other group members. Members are encouraged to be as active within the group as they like or simply add their names to the maiiing list to receive newsletters.

Members are sent questionnaires to complete and this information is part of a database that is used to help families give each other support and advice. It is also a good source of information for any professional who may want to research into the condition.
 

Council for the Advancement of Communication with Deaf People.
 


CACDP aims to promote communication between deaf, hard of hearing, deafblind and hearing people by offering high quality nationally recognised assessments and accreditation in British Sign Language (BSL) and other forms of communication used by deaf people.

They offer the following exams, subjects:

Council for the Advancement of Communication with Deaf People.
Registered Charity Number 1071662
Registered Company Number 3581178
 


Deaf-Blind Fellowship The sole purpose of the Fellowship is to provide opportunities for young deaf blind adults from 20 to 45 years old to get together where they may associate and take part in stimulating and challenging activities and have fun. Holidays are provided but are only suitable for deaf blind people who are capable of fitting into a normal holiday hotel setting.
 
Deafblind Scotland. A deafblind or dual sensory impaired person is someone who has significant difficulties with both sight and hearing. An estimated 40 people in every 100,000 have a dual sensory impairment. Most deafblind people spend a large part of their lives lonely and cut off from society and less than 5% of deafblind people have jobs. Deafblind Scotland exists to redress that balance, they employ eight deafblind members of staff and 50% of the Board of Directors are deafblind people. Deafblind Scotland offers communication skill training to any worker involved with deafblind people and provide deafblind awareness sessions to any interested groups of people.

Deafblind Scotland is a charity whose aims are to further the interests and needs of people who suffer from both hearing and sight impairments (deafblindness), and also to generate public awareness of this condition. Deafblind UK caters for the needs of deafblind people in all walks of life and provides many services.

Deafblind Scotland, have a 24 Hour Free Helpline telephone number for deafblind people and those who
support them, please use the service for help, information or just a chat, remember they are their to help us, they are just a telephone call away.

The Telephone number for Deafblind UK's, 24 hour Helpline is 0800 132320.

Deafblind Scotland And Deafblind UK are one organization.

Deafblind Scotland, Usher Syndrome Project,

Usher Syndrome Project in Scotland

Deafblind Scotland is committed to supporting people with Usher Syndrome as part of their work in the deafblind community. For some time it was apparent that people with Usher Syndrome, particularly in Scotland, were often unidentified and isolated, without access to organisations which might offer information, advice and support. We wanted to reach such people.

The aims of the project are to: Raise awareness of Usher Syndrome; Identify people with Usher Syndrome in the deaf community, the blind community and in the general population; Provide information and ongoing support to people with Usher and their families; Increase public awareness of the daily problems caused by having Usher; Train volunteers who have Usher to undertake this work in their own community.

It is hoped that as a result of doing this work in Scotland, much information can be gained which will be helpful to everyone working in this field. In order for us to achieve these aims it will be necessary to have the full support of the deaf community, the blind community, the general public and professionals who may come into contact with people who have Usher syndrome.
 


DEAFBLIND UK, The Association of Deafblind and Dual Sensory Impaired People.


Deafblind UK Technology Services


The Technology Services Section is based at Deafblind UK's headquarters in Peterborough, but Deafblind UK has many development workers based around the country, and a Scottish office in Glasgow. The Technology Services Section deals specifically with the problem of deafblindness and access to information technology.
 


Fairfields School, Day school for pupils with physical disabilities and associated learning disabilities; multi-sensory impairments or complex medical conditions.
 

Foley House Trust Double/single bedroom accommodation is available for 20 people (men and women, deaf-blind, deaf and those with additional disabilities). The age range is from 40 upwards. Other services include rehabilitation, holidays and respite care.
 

IAEDB, The International Association for the Education of Deafblind People, Activities: World and European Conferences every 4 years. Biannual magazine: "Deafblind Education". Staff Development Centre. Committees on: Staff Development, Usher Syndrome, Congenital Deafblindness, Aquired Deafblindness, Communication.

Multi-Needs Sensory Impairment Team,

Norfolk VI Units The Centre supports pupils who are VI, HI or deafblind at the Clare Special School.
 

Northern Counties School for the Deaf, Provides education for hearing and multi-sensory impaired children and young adults. There is day provision for those aged 4-19 years and Mon-Fri residential provision for those aged 11-19 years. Outreach service for parents of multi- disabled children.
 

Rebecca Goodman Centre Provides education on a day or residential basis to dual sensory disabled children from age 2 to 19. Whitefield schools can also provide training for teachers and professionals on dual sensory disability. A support service is available to support staff or parents working with dual and multi-sensory impaired children placed elsewhere.
 

Royal Association in aid of Deaf People.
 


The Royal Association in aid of Deaf people (RAD) is a registered charity which was founded in 1841. Today RAD strives to meet the individual needs of Deaf children and adults and deafblind people through the provision of services and the use of RAD Centres for Deaf People. The head office is based in Colchester and RAD has four regional teams based in Essex, London, Surrey and Kent.

From 10 RAD Centres and other outreach points spread across south-east England, RAD offers a variety of services which provide Deaf people with facilities that meet the unique needs of the Deaf community. These services include Family Groups, Special Needs Groups, Drop-in Days when advice, advocacy and counselling are available, Day Care Luncheon Clubs, Teenage Groups, Hard of Hearing Clubs and Equipment Needs Assessment. The training programme includes British Sign Language Classes and Deaf Awareness training for individuals and groups.

The RAD Sign Language Interpreting Agency provides professionally qualified people to aid communication between Deaf and hearing people. British Sign Language (BSL) is the first language of many Deaf people. There are many situations where an interpreter may be needed. The list is endless and ranges from job interviews and training, to doctor's and hospital appointments and ante-natal classes. It includes police and court work, solicitor's appointments and counselling sessions, meetings and conferences as well as weddings and funerals.
 


Using sign language and touch for those who are blind as well as deaf, this group of people is freed from the constraints which prevent them playing a full role in society.

RAD chaplains, based in the dioceses of London, Southwark, Chelmsford, Guildford and Rochester, collaborate closely with diocesan authorities in providing comprehensive and caring ministry for Deaf and deafblind people. Normal services are conducted in sign language, and Deaf congregations take an active and responsive part. Often, there is a Signing Choir, whereby spiritual and musical joys are shared.

When necessary, volunteers use finger-spelling to ensure that deafblind people can join in the worship, and balloons may be used to help feel the vibration of the music.

Apart from formal worship, RAD chaplains are dedicated, and highly trained, to provide a listening eye and a helping hand, for Deaf and deafblind people in times of stress: guidance, in spiritual and other intimate, personal difficulties; comfort in sickness, whether in solitude or in hospital; consolation in grief. They visit elderly and housebound people, giving Holy Communion to those who ask. And, of course, they enable Deaf people to understand, and to celebrate the great sacrements of life, if they so wish: marriage and baptism, or the reverence of a Christian funeral.

Although the RAD Chaplaincy is Anglican based, our ministry often extends to contact with people who are Deaf or deafblind from other denominations or faiths. Whenever necessary, we are happy to help with appropriate liaison.

If you would like to join us for worship, please contact:


Royal Deaf School, Cheshire, Teaches children from 4 to 19+ years with all degrees of hearing impairment, multiple handicaps & visual impairment. Specialist MSI unit. Training course for staff working with pupils with severe or profound learnning difficulties and multi-sensory impairment.
 

Royal School for the Deaf, Derby, Teaches deaf children including those with learning problems and/or visual impairment.

Royal National Institute for the Blind, Condover Hall School, School for blind children who also have other handicaps. Contains a special service for deafblind children. Runs short courses and study visits for professionals

Royal National Institute for the Blind,

Royal National Institute for the Blind, Services for Deafblind Adults
 

Guidehelp schemes offer deafblind people regular personal support on a one-to-one basis through guidehelp workers. The Social Services Development Unit assists local authorities in the setting up of guidehelp schemes. This contact is for authorities in the North of England and Scotland.
 

Alternatively for authorities in the South of England, Wales and Northern Ireland please contact

RNIB is committed to helping local authorities develop services for deafblind adults.

We can:

The Royal National Institute for Deaf People.
  The Royal National Institute for Deaf People (RNID) is the only major charity in the UK concerned with all aspects of deafness - representing the needs of deaf, deafened, hard of hearing, and deafblind people. Its vision is to enable deaf people to exercise their right to full citizenship and to enjoy equal opportunities. It does this by increasing awareness and understanding of deafness and deaf people, and campaigning to remove prejudice and discrimination by raising issues and promoting debate in the media and in parliament. And also including Communication Support Services for deafblind people, eg deafblind interpreters. .
 
Royal National Institute for Deaf People,  Poolemead Centre. Rehabilitation and long-term care of deaf & deafblind adults; has 5 rehabilitation units and 2 long-term care units; staffed & unstaffed group homes; flats; care home provision. Occupational development is available for residents and day placements.
 

Royal West of England School for the Deaf, Boarding/day school and service for deaf and deafblind pupils from 5 to 19 years.
 

SENSE The National Deafblind and Rubella Association.
  Sense is one of the leading national voluntary organisations supporting and campaigning for deafblind people, their families, supporters and professionals who work with them. Sense provides a wide variety of specialist services for people who acquire deafblindness in later life:

Sense Usher Services

Sense Usher Services provides information, training and support to help people with Usher syndrome live as independently as possible.

Sense Branch Network

Local branches act as mutual support and awareness raising groups for parents and to share information with each other. For information about the branch in your area, contact the Branch Officer.
 

Regional Addresses

They now have residential, day, outreach, intervenor and education services covering Exeter, Seaton, Glastonbury, Trowbridge and Bristol supporting nearly 50 adults with dual sensory impairments, or single sensory impairments with additional disabilities.
 

New membership scheme for Sense.

Sense has just started A new Membership Scheme, aimed at widening the participation of people connected to the charity, has just been introduced by Sense, the U K's leading charity working with people who are both deaf and blind.

The scheme--which targets social services, care professionals, volunteers, staff, deafblind people and families--aims to enable users to have more of a say in the policies and day-to-day running of Sense by helping the charity to keep in close contact and carry out major consultations with its stakeholders.

"The new scheme has been launched to give all those who come into contact with us the opportunity of increasing their involvement within the organisation", said Sense Chief Executive, Rodney Clark.

"This is vital if we are to continue to accurately reflect the real needs of our growing and diverse client group. A lot of people feel very strongly about Sense. This scheme is one way of formalising their voice and providing a structure in which to `belong'."

Membership, which costs £10 Pounds per annum, provides people with an automatic subscription to Sense's quarterly magazine--Talking Sense--the option to receive other existing newsletters and to belong to various support networks.


Sense Scotland.

Sense Scotland is part of the UK National Deafblind and Rubella Association and is registered as a company with charitable purposes in its own right in Scotland.

We work with deafblind people. The term deafblind refers to a range of combinations of hearing and visual impairment and very rarely means total deafness and total blindness. We also work with children and adults who have:

impairment to both sight and hearing with or without other difficulties
impairment to hearing with other difficulties
impairment to vision with other difficulties
People who are deafblind, or who have sensory impairment and other difficulties, can need special help with communication, information, learning and mobility.
 


Signpost North East, Information and advice for VI people, guide help befriending service for deafblind in Sunderland, advice service in Departments of Ophthalmology Clinics at six hospitals in the area.
 

SW-Special, The DfEE Co-ordination Project. (DfEE) Department for Education and Employment.
 

SW-Special Project will begin with a strong emphasis on sensory impairment (loss of sight, hearing or both), but will gradually develop to cover other areas of special educational needs. It will seek to put you in touch with a wide range of people and organisations, bring you up-to-date news and seek your opinions as a basis for development within the South-West of England.

The Project is overseen by a Steering Group drawn from Local education authoritys, Social Service and Health officers, parents, voluntary organisations and teachers. It is run by a Facilitator, Alvin Jeffs, who was previously Head of Special Educational Needs Services in Avon and has spent 32 years in the field of special educational needs education and training. As well as this Project, Alvin is also an inspector of primary and special schools for OFSTED, the vice-chair of a Health Trust for adults with learning disabilities and works very closely with parent organisations.

I haven't got an address for the SW-Special, The DfEE Co-ordination Project Yet but I hope to get it very soon.
 

Transition to Adulthood Team The aims of the Transition to Adulthood Team, are to enable young disabled people (16-25), their families and carers to plan for and to meet needs into adulthood, prior to and following leaving school or further education.
 

USHER UK.
  Usher UK is a national voluntary group affiliated to Sense and run by Usher people. It was formed in June 1995 and is for Usher people of all ages.

Aims and Objectives:
 


Communication is one of Usher UK's most important objectives. No matter what communication methods are required, Usher UK will seek to provide all channels of communication enabling all of Usher people to be kept as fully informed as possible.

Usher U.K. isn't only for Usher people, partners, family and friends - deaf or hearing - are all welcome to join and participate.

There is a quarterly Usher UK newsletter to keep members informed of what's happening and up-coming events such as fundraising and social events.  All members receive information and correspondence regularly.
 


Whitefield School & Centre, The library has a special needs information service for subscribers. Members may also subscribe to the bi-monthly current awareness bulletin which reflects the needs of parents, educators, support services, health services and administrators. The school provides education and support for deafblind children and children with sensory impairment and learning difficulties.

Woodside Family Centre, Centre run by Sense for blind and deafblind children and their families. Resource centre offering information and advice; toy library, sensory stimulation room, creche with many play resources and plenty of room.
 
A-Z to Deafblindness http://www.deafblind.com