Our Family Support Service has been in existence since 2003. We have a network of workers who provide services nationally to individuals with Spina Bifida and/or Hydrocephalus, their families and carers.

The aim of the service is to work with our members, their families and carers, by providing guidance and information in an environment which is conducive to their needs.

The Family Support Worker (FSW) will visit individuals and/or families in their own home, in hospital, in school or in the work place. The nature and delivery of our service is a direct response to the needs of our members, their families and carers. We provide information, support and guidance from the time of diagnosis, which can occur during pregnancy or at the time of birth, through to adulthood.

We provide healthcare professionals, education professionals and those working within the Disability sector with information, resources and guidance, ensuring that our members receive the best possible provisions from their multidisciplinary team.

THE ROLE OF THE FSW

The role of the FSW is very diverse and is guided by the needs of our members, their families and carers. Our aim is to work with our members, their families and carers by providing guidance, advocacy, emotional and practical support.

Sometimes all that our members need is someone to listen to them. This is an essential part of the Family Support Workers’ role. We are a confidential*, non-judgemental and respectful service bound by the Data Protection Acts 1998 and 2003.

There are Family Support Workers throughout the country. Please contact the National Resource Centre who will put you in touch with the FSW in your area.

* Confidentiality will not be breached unless a person (service user or otherwise) is deemed to be at risk of or discloses an allegation of sexual abuse, self-harm, suicidal intention or criminal activity. SBHI staff are bound by a duty of care to report such allegations.

WHO ARE WE?

The Family Support Team has people from nursing, education, and social care backgrounds. Our team can assist you by providing information and support on medical matters, youth development, education, continence management, mobility, independent/supportive living, relationships and sexuality, entitlements, employment, advocacy and outreach services.

Family Support Services Contact Numbers:

Educational Officer                                   Katie Kelly              [email protected]          087 379 2051

(National position)

Spina Bifida Hydrocephalus Ireland

National Resource Centre,

Old Nangor Road,

Clondalkin,

Dublin 22

Website: www.sbhi.ie

Tel: 01 457 2329

Fax: 01 457 2328