ASBAH, the Association for Spina Bifida and Hydrocephalus, was formed in 1966 and serves England, Wales and Northern Ireland.
Every year in the UK, there are up to 1200 pregnancies affected by neural tube defects ie SB and anencephaly. About 9 out of 10 families make the very difficult decision to terminate their pregnancy. ASBAH specialist advisers will give all the information on the disabilities that the parents need but never assist with the decision. Whatever choice the parents make, ASBAH will support them through this traumatic time.
Through a network of professional Advisers backed up by specialists in mobility, continence management, education and medical matters, ASBAH provides advice and practical support to people with these disabilities, their families and carers.
ASBAH aims to improve services for people with spina bifida and/or hydrocephalus, to work with them to extend their choices, and maximise opportunities for independence and achievement.
We work with about 60 independent local Associations throughout the country to share information and good practice, and to deliver a range of high-quality support and specialist services.
The Association has reached the halfway point in its regional development programme - the setting up of fully-integrated regional teams to make our services more effective in the field and also to build on our local networks of specialist contacts. We now have regional teams working in London and the South East, in Eastern England, in North East England and in Northern Ireland. Our intention, as soon as finances allow, is to spread this cover throughout England, Wales and Northern Ireland.
ASBAH is implementing policies aimed at ensuring that the rights of people with spina bifida and/or hydrocephalus to dignified and fulfilled lives are recognised by society at large, and that the voice of all our members with disabilities is listened to and acted upon within the Association. In all our work, we shall be guided by a new framework document, our Aims and Principles, which were agreed upon after lengthy consultation involving all levels of ASBAH as we approached our 30th Anniversary.
The Your Voice in ASBAH consultative group of disabled members meets throughout the year. The group, which sets its own agenda, provides essential feedback and acts as one of the channels through which people with the disabilities can join our policy-making committees and help guide the future of the Association.
ASBAH has expertise in advocating the legal rights of children with disabilities to the best possible education, working closely with their parents.
ASBAH continues to keep in close touch with similar organisations and other professionals both at home and abroad in order to dissseminate examples of good, professional practice in our highly specialised field.
ASBAH promotes the benefits of the B-group vitamin Folic Acid as a way of helping to reduce the number of pregnancies which are affected by spina bifida and other neural tube defects.
We continue to be an influence on government and the local authorities, by speaking up for people with spina bifida and hydrocephalus. Our high-level contacts with ministers, MPs and peers, and civil servants help ensure that disabled people have adequate funding and resources in order to secure their civil rights; ASBAH also takes part in campaigns which seek to rectify deficiencies in public sector support and in public attitudes towards people with disabilities.
The Association supports medical, scientific, social and educational research, when funds are available. The work of ASBAH is financed largely by voluntary contributions. ASBAH is a member of the Association of Medical Research Charities.
