We provide family support services in North Tipperary, Limerick, and Clare 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 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.

In addition to supporting the family through direct contact, this can often be achieved through indirect sources. We have been involved in organising and running information sessions and seminars throughout the Mid-West region. The need for such events has been identified through contact with members.

Family Support

Health professionals’ from midwifery and pediatric hospitals contact us at the time of diagnosis and the FSW can link up with families in the community to provide information, support and guidance. They liaise with you and health professionals such as consultants, therapy services, continence and pain management advisors etc.
They offer support and guidance that can empower our members to manage their own specific health needs.

The FSW can provide a number of different supports while members or family member and/or carers are in hospital. They can visit members in hospital and liaise with their medical team and the hospital social worker. They offer support by helping to make sense of ‘medical jargon’, to ensure members are getting the best possible up-to-date treatment and by empowering members to ask the most relevant questions. They can also help by sitting with members and talking through their fears and anxieties.

FSW’s provide help and support through pre-school, primary, post-primary, resource centre and third-level education by providing information, resources and advice in relation to education supports and provisions. The team also provides training to teachers and special needs assistants, specific to the needs of the individual with Spina Bifida and/or Hydrocephalus.

The FSW can liaise with the appropriate council and government bodies in relation to housing needs. This may involve guiding members through the process of housing applications, housing adaptation and mobility aids grants, rent allowance or community and residential housing.

FSW’s can accompany members to hospital visits, or to a school reviews. At other times members may just like to know what their rights are. They also provide information to schools, colleges, universities, or employers.

The FSW can provide members with resources and information on employment. The team can guide members through their work options and put members in touch with the appropriate work and training agencies specific to your needs. They offer advice on work-place employment and supported employment options and provide information and guidance to your employer and can act as an advocate should members encounter any employment difficulties.

Social Needs
FSW’s offer support and guidance on planning for the future, building personal relationships or responding to social barriers that may be encountered. A Family Support Worker can offer a number of supports in relation to relationships and sexuality. They provide information and guidance and can put you in touch with sexuality advisors as well as running information seminars and forums.

Continence Management
The FSW has a number of resources and information available on continence management, such as linking members with consultants and community continence advisors.

FSW is involved in lobbying the government to improve services and access for our members. Such issues include improved pediatric neurosurgery services, a transition programme to improve communication between pediatric and adult services. They support the research of Folic Acid and run awareness programmes and lobby government for mandatory fortification of Folic Acid in our foods.

As a direct response to our members needs the FSW runs yearly family respite weekends and monthly sports inclusion programs. For our junior members they offer summer activity days and day trips. To-date our monthly support groups, facilitate first-aid training, peer-to-peer support and study days covering topics such as education, continence management and skin-care management. The agenda for the support groups is led by the needs of our members.