Support

Family Support Service

The aim of the Family Support Service is to work with our members, their families and carers in their own home, in hospital, in school, or in the work place, by providing guidance and information in an environment which is conducive to their needs.

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. 

For further information please visit the Family Support section page

Education Officer

The aim of the Education Officer is to increase knowledge and awareness in relation to the conditions spina bifida and hydrocephalus.

The Education Officer:

  • Undertakes visits to Preschools, Schools, and College/Universities to discuss the teaching and learning implications for spina bifida and/or hydrocephalus.
  • Visits Universities and Colleges to guest lecture to students to increase the awareness levels to students in relevant courses.
  • Runs an information session in the workplace environment to give employers and co-workers an appreciation of some of the needs and effects of spina bifida and/or hydrocephalus.

Respite and Recreation Service 

The Respite and Recreation Service provides services nationally to people with spina bifida and/or hydrocephalus, their families, and carers. Its aim is to provide and develop respite and youth services that are conducive to the changing needs of our members.

We encourage our members to enjoy a healthy, social, active, and fulfilled lives, to avail of all education and employment opportunities and to promote the development of a progressive society that is inclusive, aware, and accessible to all. 

For further information please visit the Respite and Recreation section

SBHI Resource Centre - Clonshaugh 

The SBHI Resource Centre is located in Clonshaugh, Dublin 17. The centre offers a variety of different life enhancing opportunities to our members through One-to-One Computer Courses, Arts and Crafts, Social Outings, Hand Foil Printing, Daily Living Skills, and Personal Development Training. 

All training is person centred and is developed and designed to meet the individual specific needs of our members. 

All of the above is supported by our dedicated team of Occupational Therapist, Assistant to the Occupational Therapist, and Personal Assistant. The team works on a daily basis to support learning and personal development of people with spina bifida and/or hydrocephalus.

‘Le Club’ - SBHI Resource Centre - Clonshaugh. 11:00am to 1:00pm - Contact Aisling Tel: 01 848 7311. The club is for over 18's and is a great opportunity to meet new people and have lots of fun. Members of Le Club go to various different outings and events throughout the year and always have a wonderful time.

Advocacy and Lobbying

SBHI lobby the HSE, Department of Social and Family Affairs, Department of Health, and Department of Education and Science on behalf of our members. Issues we have lobbied include improved paediatric neurosurgery services, integrated transition programmes to improve communication between paediatric and adult services, and ensuring the Education for Persons with Special Education Needs Act (2004) is being adhered to, with particular reference to Special Needs Assistants.

We continue to support the research of Folic Acid and run awareness programmes and lobby government for mandatory fortification of Folic Acid in our foods.

The Family Support Workers advocate on behalf of members, families and careers at HSE Case Conferences and with the Department of Social and Family Affairs to ensure entitlements are being provided for.

SBHI are continually working with Children's University Hospital, Temple Street and the HSE to ensure that the Spina Bifida Clinic services are conducive to the needs of members, and that members transitioning to Temple Street are adequately considered.

Each year SBHI run seminars which lobby issues on behalf of our members, parents, and careers to the professional sector. To-date topics have included: Spina Bifida, Hydrocephalus, Relationships & Sexuality, Employment, Education, Independence and Social Issues, Transition from Paediatric to Adult Services, Equality & Entitlements, and Mobility.

 

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