Contact a Family
An invaluable source of information for families who care for children with any disability or special need, Contact a Family puts affected families in touch with each other. The ‘cafamily’ website has won many awards—the UK Internet Site of the Year 2000 and one of the ‘top ten health websites’ featured in The Guardian. As well as an excellent search facility and links to other disability sites, the website contains the complete CaF Directory—an extremely valuable resource which lists contact groups for over 1000 rare syndromes, behavioural phenotypes and medical conditions.
National Electronic Library for Learning Disabilities
This site is a ‘virtual branch library’ of the National Electronic Library for Health. Supported by the information services of the British Institute of Learning Disabilities (BILD), the site’s aim is to provide access to the best current knowledge in relation to the development and delivery of services for people with a learning disability. While still in development, the site’s ‘core collection’ already includes the text of many articles on learning disabilities. The 30,000 records on the BILD database will soon be available on the NeLLD site. There are alphabetised lists of useful links and organisations, a discussion board and links to journals with contents on the web.
The Foundation for People with Learning Disabilities
The Foundation for People with Learning Disabilities is a registered charity which is part of the UK Mental Health Foundation. Its website contains information on its research and projects, including the GOLD programme (Growing Older with Learning Disabilities), spirituality, and the Choice Initiative (support for people with severe, multiple and profound learning disabilities). It includes a forum to bring people together on policy and work-related issues. The ‘Connects’ page includes links to more than 1000 websites, organisations and events.
Included within this website is a web-based training resource for medical students and others concerned with the healthcare of people with learning disabilities, which has been developed with the (UK) Down Syndrome Association. This information can also be accessed via www.dsa-uk.com.
The British Institute of Learning Disabilities, an independent registered charity based in Kidderminster, is a major resource in intellectual disability. Its website includes membership, publications, reading lists and notice of special projects and events. Factsheets provide answers to commonly asked questions for people with learning disabilities and their supporters. (Membership of BILD, which entitles one to receive the quarterly British Journal of Learning Disabilities, BILD Advantage Newsletter and access to the BILD Library (interlibrary loans) is quite reasonable, notwithstanding the £/€ differential. Naturally, there’s an application form on the website.)
Norah Fry Research Centre
Situated in the University of Bristol’s Department of Mental Health, The Norah Fry Research Centre has as its principal interest the evaluation and development of services for people with learning difficulties. Its website discusses current projects, publications, news and events. With the aim of making research findings as widely available as possible, it offers free downloads of materials, e.g. Bridging the divide (the experiences of young people with learning disabilities and their families in transition), leaflets on tube-feeding, supported employment, and a review of the modernisation of day services.
The Tizard Centre at the University of Kent is one of the main academic groups in the UK working in learning disability, mental health and services for older people. The Centre’s website describes its publications and outlines its work and that of the East Kent University Affiliated Programme which has been formed in partnership by the Tizard Centre and East Kent Health Authority. The UAP is currently evaluating the outcomes of long-stay hospital closures and the adoption of an ‘active support’ model of care.
Mencap, the umbrella charitable organisation for learning disability in the United Kingdom, has recently redesigned its website with easy-to-use icon-images, plus sound, to access information on housing, money, education, jobs, leisure. The website lists member branches, has an A-Z index, and includes the text of several Mencap project reports.
RNIB Multiple Disability Service
The Multiple Disability Team of the Royal National Institute for the Blind has an extensive website which contains their Focus Factsheets for staff working with people with visual and learning disabilities. Eye problems, sight testing, eye care, glasses for adults with severe learning difficulties, low-vision services—there is much useful information to be gleaned from this site.
The UK White Paper Valuing people: A new strategy for learning disability for the 21st century was published in March of 2001, proposing a programme of action to improve services. The document is available on the above website, as well as an accessible version of the white paper and other accompanying material for self-advocates and families.
SCOVO (Standing Conference of Voluntary Organisations for People with a Learning Disability in Wales)
SCOVO has been updating its website to include a membership list (useful for contacting learning disability services in Wales), news and events guides, consultation documents etc. Their monthly Llais Update newsletter is also available online (llais + voice).
Community Living is an independent quarterly journal in learning disability, which also produces other publications in the field. The website includes an online learning disability discussion forum, in cooperation with Learning Disabilities UK (LDUK–www.learningdisabilitiesuk.org.uk).
The Elfrida Society
The Elfrida Society campaigns for new approaches to care, undertakes innovative projects and supports initiatives taken by people with learning difficulties. The society’s website describes a number of its projects—the ‘Homelink’ supported living scheme, an alcohol consortium, a parenting forum (for parents with learning disabilities living in Islington, London), access to the community, etc.
Values into Action
This UK organisation was founded in 1971 to challenge the continuing government policy of institutional care. The charity continues to campaign for justice and equal citizenship for people who have learning difficulties. Its website contains material on its projects, with position papers on issues such a language and labelling, genetic research, attitudes to people with disabilities, supported living and self-advocacy.
These two online general-disability magazines cover news and feature articles, profiles, classified ads etc. An archive of back issues is included. Disability Now includes 16 topical discussion forums.
SPECIFIC LEARNING DISABILITIES SITES
There are a great many UK disability support groups which have their own websites (see listings in the CaF Directory above.) Just to give two examples:
Down’s Syndrome Association—UK
An extensive website with information for families and professionals, a dedicated page is offered to new parents. Pages cover campaigns and media information, literature, news, medical research, etc. etc. (See also the Foundation for People with Learning Disabilities, above.)
National Autistic Society (NAS)
This site includes information about autism and Asperger syndrome and the support services available in the UK. It has sections for people with an autism spectrum disorder, and for families, professionals and journalists. It lists publications and resources, training, conferences, and includes news items and an online shop.
WEBSITES FOR SERVICE USERS
Although several of the above websites are designed to be accessible for service users (especially Mencap, VIA and the Elfrida Society), the following sites are specifically designed for and by people with learning disabilities.
This website covers a wide range of topics such as health, rights, relationships, money, housing, leisure, work and types of advocacy. It lists UK several self-advocacy groups which have their own websites.
Central England People First (formerly Northants People First) has had a website for several years. It lists links to ‘Mediafirst—media for people with learning difficulties’ and interesting projects and organisations involved in leisure and communication projects. It provides links to many self-advocacy groups in the UK, Europe, Australia, Japan and many US states. Let’s hope it can soon include Irish self-advocates’ websites!
Plain Facts is a topic-magazine produced for people with learning difficulties by the Norah Fry Research Centre (see above). Issues of the magazine are available on the website, each giving easy-to-read versions of research reports on issues such as supported employment, housing, choosing staff, making complaints, etc. There are links to other user-friendly websites.
MORE IRISH WEBSITES
(with apologies for omission in the last issue)
Down Syndrome Ireland
Down Syndrome Ireland’s website contains lists of resources and contact groups. It has A diary of events which, does not seem to be up to date—unfortunately, a common problem for all webmasters.
Irish Autism Alliance
The Irish Autism Alliance which was founded in the spring of 2001 has established a website at the above address. It has a useful contact list of the founding organisations in the alliance, and gives some information on the campaign for improving services in autism around the country.