Our main aim is to provide advice, advocacy & support to children, adults and families and all others affected by spina bifida and/or hydrocephalus. When a child is first diagnosed it is a very emotional and stressful time for parents and other family members. Parents may feel socially isolated, frustrated and under a great deal of emotional and financial pressure.
Families need advice and support to help them come to terms with the initial situation that faces them and to learn how to manage in the years ahead. Such support will also be required throughout the child's life, usually into adulthood, to ensure that all the specialised needs of the individual are met.
Having access to the right advice and support helps ease the stress of those already experiencing a traumatic period.
Every individual or family situation is unique and therefore requires unique support, but our primary services include:
- Medical: We can provide information and advice on health related issues such as continence and mobility and liaise with all relevant health professionals.
- Education: Advice and information is available on such topics as nursery and pre-school provision, placement requests, education law, your rights, and disability discrimination. We can also provide training to teachers about physical, educational and behavioural aspects.
- Housing: We can help if you have to apply for house adaptions or indeed need to move to more suitable housing.
- Financial assistance: We can apply for grants on your behalf for assistance with expenses such as holidays, clothing, bedding and specialist equipment.
- Equipment: We provide information and advice on mobility issues and the sourcing and purchasing of specially adapted equipment including cars, wheelchairs and even toys.
- Benefits: There are some specific benefits you will be entitled to and we can assist with completing the applications.
- Advocacy: If you would like someone to accompany you to a hospital visit, or to a school review, we would be happy to do so. At other times you may just like to know what your rights are. We are also happy to provide information to schools, colleges, universities, or employers.
- Social needs: We provide advice and counselling on planning for the future, building personal relationships or responding to social barriers that may be encountered.
- Leisure and recreation: Advice on accessible holidays and sports activities.