SSBA Support for Parents and Families affected by Spina Bifida

How can we help?

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. 

Currently over 3000 registered users of the Association benefit from access to a lo-call telephone help line that puts them in direct contact with a Family Support Worker. This is a professional service staffed by specialist support workers.  

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 & Recreation
  Advice on accessible holidays and sports activities
• Family Groups

     Monthly groups are held on a Saturday in Aberdeen, Edinburgh and Cumbernauld. This free service provides the opportunity for families to listen to specialist advisors on a range of subjects and where their children can meet other children whilst having fun in the creche.