Support for parents and families

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 more than 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. For more information please contact Family Support by telephone: 01236 794500 or email: familysupport@ssba.org.uk for further details.

Call us about spina bifida and hydrocephalus on 08459 11 11 12 - We can help.

We provide a lo-call telephone number which means you will only be charged the local call rate. Both home or hospital visits may be arranged. A Support Worker will be available between the hours of 9.30am - 4pm Monday to Friday. At other times please leave a message on the answering machine and all messages will be responded to.