One challenge which ASBAH has welcomed in the past three years has been the closer involvement of people with spina bifida and/or hydrocephalus in the work of the Association.
ASBAH has traditionally aimed its services at children and parents. Indeed, the first groups were set up by parents with their own particular children's interests at heart, and the professionals involved with those children.
Together, this partnership of parents and professionals saw there would be benefits in pooling knowledge and expertise within a national Association providing its own high-quality services, encouraging the development of good medical, educational, housing and employment practice throughout England, Wales and Northern Ireland and representing the interest of people with the disabilities at the political level.
Since the formation of ASBAH, improvements in medical technology and changing attitudes about life expectancy have resulted in more people with spina bifida and/or hydrocephalus surviving infancy than ever before, and who now have adulthood stretching out before them. Many have achieved levels of independence which earlier generations would have considered to be practically impossible.
Disabled people nowadays require more than a nice home, the best possible medical care and protection from the outside world.
Today, their expectations are far more challenging. Disabled people demand rights enjoyed by all people to continuing access to education throughout life, to worthwhile employment which can be full or part-time, paid or voluntary, and to have the means available to help them live life to the full.
ASBAH views this energy and these demands as an opportunity to improve on its performance in the future.
Today, disabled members are in full partnership with parents and professionals in the activities of the Association, participating at trustee and committee level in shaping its future.
One way to quicken this process has been to set up, within the organisation, a service users' forum of people with spina bifida and/or hydrocephalus called Your Voice in ASBAH.
This is a self-selecting group which discusses practice and policy and offers advice, monitors performance and nominates its members to participate in the organisation's main decision-making committees.
Discussions have ranged over a wide area of concerns, including equal opportunities in recruitment and promotion, ASBAH's educational policy, civil rights for disabled people, the depiction of disability in the media, ASBAH's own publications, and the post-18 gap in statutory services provision to people with disabilities.
The group guided ASBAH's response to the government consultation paper on its measures which will replace rights for disabled people, and which form the basis of its Disability Discrimination Act. As with racial minorities and with woman, whose rights are now protected by law in important ways, ASBAH believes disabled people suffer discrimination, and it is not enough to hope that society will gradually adjust attitudes, access and services.
Steps being taken by the Your Voice in ASBAH group to develop regional forums have been boosted by a government grant intended to encourage this activity, and the group has been involved in lobbying the European Commission for greater support of ASBAH's work. One early result has been the securing of a grant to fund training for a group of young women with spina bifida and hydrocephalus.
The group is also offering training courses to young people with spina bifida and hydrocephalus in the hope that they might be encouraged to take a greater part in the work of their local ASBAH associations.
