Besides specialist advice and support to service users, their families and the professionals who support them, ASBAH pays considerable attention to providing information about spina bifida and hydrocephalus to a large number of other enquirers, including other professionals and voluntary agencies, statutory bodies, students, supporters and the general public.
The information department maintains ASBAH's central records, ensuring their continuing confidentiality by limiting access to authorised staff. The department compiles statistical abstracts which help to inform the Association's campaigning and lobbying on matters of strategic and political importance, and offers a research facility to senior staff engaged in campaigning, lobbying, and responding to consultation papers from the statutory sector.
There has been a vast amount of government legislation recently which will have enormous effects on the lives of our members. ASBAH is determined to monitor and, where possible, help shape this legislation. To do this, we have become very active in the field of parliamentary and ministerial lobbying. To work effectively in this area, we have to be very certain of our facts and the information department collates statistical data about our disabled members and their families. This enables us to produce evidence to support our comments about legislation and to help press for new legislation to improve conditions for people with spina bifida and/or hydrocephalus.
ASBAH has commented to numerous government reviews on such topics as wheelchair services, embryonic research, social security payments, transport for disabled people, access to personal files, continence supplies, housing adaptations, special needs education, civil rights for disabled people and the White Paper, The Health of the Nation.
Information staff also answer inquiries about a range of matters, including accessible holiday accommodation and travel arrangements, and refer callers to reliable sources of specialist insurance cover. They can also help to locate specialist suppliers of non-standard clothing and shoes, disability aids and equipment.
Requests for information should be sent to:
Information Officer, Association for Spina Bifida and Hydrocephalus, 42 Park Road, Peterborough, PE1 2UQ, England
Tel: 01733 555988
Fax: 01733 555985
email: gillw@asbah.org
(Please let us know which country you live in so that we can give better information)
