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History
In 1968 a small group of parents whose children had Spina Bifida and/or Hydrocephalus established a voluntary organisation which would highlight awareness of these two conditions and support families, individuals and carers who were affected. Their determination and dedication resulted in the establishment of The Irish Association for Spina Bifida & Hydrocephalus (IASBAH). The association was formed by parents who were committed to taking action to improve the prospects of people who were living with Spina Bifida and/or Hydrocephalus in Ireland.
These parents were pioneers who laid the foundations for what is now a nationally recognised organisation. Their optimistic spirit encouraged them to affect real change for people who had the conditions, their families and carers.
In April 2008 National Association of Spina Bifida Hydrocephalus Ireland Ltd was formed, and trades as Spina Bifida Hydrocephalus Ireland (SBHI).
Today
Spina Bifida Hydrocephalus Ireland continues its tradition as a voluntary organisation, with an elected Board of Directors made up of voluntary members and parents as well as branches in all four provinces which are run by groups of local volunteers. SBHI has developed and changed in many ways since it was first established. However, its dedication to its members has remained consistent.
The association has over 4000 members nationwide consisting of, those with Spina Bifida and/or Hydrocephalus, their parents, siblings, family, friends and carers.
The biggest strength of the association continues to be its members and volunteers. Our members have a wealth of knowledge and experience which is invaluable to the association and its future development.
With the assistance of Government funding and support from the HSE the association has expanded its services nationally. As a result The National Resource Centre is now a professionally run centre, which employs a CEO, a Family Support Team, a Youth and Respite Team as well as administration support.
The Family Support service provides Family Support Workers (FSW) nationally to individuals with Spina Bifida and/or Hydrocephalus, their families, carers and professionals. The aim of the service is to work with our members from time of diagnosis or the time of birth through to adulthood. We provide guidance, advocacy, emotional and practical support, conducive to the needs of our members, their families and carers.
The FSW team also works with healthcare professionals, education professionals and those working within the disability sector by providing information, resources and guidance, ensuring that our members receive the best possible provisions from their multidisciplinary team.
Our Youth and Respite team specialises in the development and organisation of youth and respite services nationwide. The team encourages members to enjoy healthy, social, active and fulfilled lifestyles and to avail of all education and employment opportunities. The team also works to promote the development of a progressive society that is inclusive, aware and accessible to all.
In 2008 the association became an affiliated member of the International Federation for Spina Bifida and Hydrocephalus (IF). We now have a representative from the Board of Directors sitting on the committee for IF (www.ifglobal.org).
The association continues to evolve and is now an active body where paid and voluntary staff work together to support its members as proactively and effectively as possible.
Our Torc
The logo was launched in May 2003 and brought about a new corporate identity to the association. The concept of developing a logo to identify the association was based on the idea of incorporating the human figure. The logo features two people facing in co-operation and mutual support. Its message is interdependence - i.e. the interdependence between the association and the people it supports.
Today the Torc is the identifying symbol of Spina Bifida Hydrocephalus Ireland, recognised throughout the country and internationally as a sign of how the association has evolved into a truly interdependent organisation.
Mission Statement
The mission or purpose of Spina Bifida Hydrocephalus Ireland is to provide information, support and advice to people with Spina Bifida and/or Hydrocephalus, their parents and carers, as well as to promote social inclusion and equality for people with Spina Bifida and/or Hydrocephalus in Irish society.
SBHI's Goals
Our vision is that people with Spina Bifida and/or Hydrocephalus will participate to their fullest potential in all aspects of life. We will:
- Provide information, support and advice to people with Spina Bifida and/or Hydrocephalus, and to their parents, siblings, and carers.
- Promote social inclusion and equality for people with Spina Bifida and/or Hydrocephalus in Irish society.
- Help our members to get the best from health, education and social services.
- Lobby the Government to improve services and access for the disabled.
We are serving for a society in which all people with disabilities are recognised for their strengths and are afforded a fair and equal opportunity to make the most of their lives. We aim to enable our members to achieve full participation in society.
Strategic Plan 2005-2010
The research conducted for the purpose of the Strategic Plan highlighted areas which the SBHI needs to improve upon and develop. The needs of people with Spina Bifida and/or Hydrocephalus have evolved with the changing age profile of this group. The research identified the following changing areas, which need to be addressed by SBHI in the future.
- Social isolation - leading to underdeveloped social skills, poor quality of life and limited opportunities
- Awareness raising and education of the general public about Spina Bifida and Hydrocephalus
- Independence, education and employment of people with Spina Bifida and/or Hydrocephalus.
It is imperative that SBHI continues to listen to and consult with people with Spina Bifida and/or Hydrocephalus and their parents and carers, in relation to their needs, so that all services are targeted, appropriate and effective.
In relation to SBHI itself, the research found that the areas in need of attention included the structure and profile, and the role of people with Spina Bifida and/or Hydrocephalus within SBHI. There is a recognised need to develop policies in a number of areas for all staff and members of SBHI.
Aims
- To identify the changing needs and challenging areas in the lives of members of SBHI and their families, and to work towards bringing about positive change.
- To promote a positive profile of Spina Bifida Hydrocephalus Ireland, internally, locally, nationally and internationally in order to work effectively and productively for the members.
- To raise awareness among the public and professionals about Spina Bifida and Hydrocephalus in order to promote understanding and equality for people with these disabilities in society.
- To develop relationships with external organisations in the disability sector in order to promote the strength and diversity of Spina Bifida Hydrocephalus Ireland.
HSE (Heath Service Executive)
Part-funding for the provision of services is provided by the HSE under Section 39 of the Health Act 2004 (formerly Section 65 of the Health Act 1953). A service level agreement between HSE and SBHI is in place.
Company Structure
| BOARD OF DIRECTORS | |
|---|---|
| Chairman | Mr. Fiach McDonagh |
| Vice-Chairman | Mr. Peter Landy |
| Hon-Secretary | Ms. Thelma Cloake |
| Hon-Treasurer | Mr. Gerry Bell |
| National Youth Officer | Ms. Ann Reid |
| NATIONAL EXECUTIVES COMMITTEE (NEC) |
|---|
| The NEC is a committee formed to represent its members and to bring together members issues at a national level. The NEC consists of 5 directors and 3 representatives from each branch committee. The NEC sits on a regular basis, bringing issues to the CEO which are representative of each branch area. |
| NATIONAL RESOURCE CENTRE | |
|---|---|
| CEO | George Kennedy |
| Accounts Manager | Karen Byrne |
| Administrator | Kathleen Ashby |
| Receptionist | Rosie Carey |
| Youth and Respite Services Manager | Wala Brennan |
| Youth and Respite Coordinator | Helen Riney |
| Family Support Communications Officer | Sarah Jacobsen |
| Family Support Worker (Mayo/Leitrim/Roscommon/Sligo/Galway) |
Sally Hibbs |
| Family Support Worker (Cavan/Monaghan/Louth/Meath/Nth County Dublin) |
Hazel McGeough |
| Family Support Worker (Dublin - odd number postcodes/Kildare) |
Edel Browne |
| Family Support Worker (Waterford/Wexford/South Tipperary/Carlow/Kilkenny) |
Doreen Costello |
| Family Support Worker (Dublin - even number postcodes/Sth County Dublin/Wicklow) |
Clare Riordan |
Branch Structure
SBHI’s regional branches provide services to its members on a local level. Each branch is represented by an elected voluntary committee made up of the following positions:
- Chairman
- Vice-Chairman
- Secretary
- Treasurer
- Youth Officer
This committee also sits on the NEC where issues are brought to the CEO which are representative of each branch area.
We have affiliated branches in the following areas:
- Louth / Meath
- Mayo / Leitrim / Roscommon
- Kildare
- Dublin
- Kilkenny / Carlow
- Wicklow
- Wexford
For further information on branch services please see Services.
Orthopaedic Footwear Centre
The Company (IASBH Footwear & Caliper Repair Centre Ltd), which now trades as SBHI Orthopaedic Footwear Centre, was incorporated on 14th August 1991 to manufacture, repair, adapt and distribute specialised footwear, callipers, etc., in the Republic of Ireland. It commenced commercial operation on 1st January 1992 when it acquired the assets and liabilities of the footwear and caliper centre then being run by IASBAH.
The Orthopaedic Footwear centre caters for all aspects of orthopaedic footwear including those with Spina Bifida and/or Hydrocephalus as well as specialist shoes designed for people with diabetes and people with sports injuries. Also available is an extensive range of orthopaedic shoes for children. For further information visit the Footwear Centre page.
Contact us
National Resource Centre, Old Nangor Road, Clondalkin, Dublin 22. Telephone +353 1 457 2329.
For general enquires - info@sbhi.ie
For Confidential Family Support enquires click here
| BOARD OF DIRECTORS | ||
|---|---|---|
| Chairman | Mr. Fiach Mc Donagh | fiachmcdonagh@yahoo.com |
| Vice-Chairman | Mr. Peter Landy | peterlandy@gmail.com |
| Hon-Secretary | Ms. Thelma Cloake | thelma.cloake@gmail.com |
| Hon-Treasurer | Mr. Conor O’ Donavan | conor.O’Donovan@mottmacpettit.ie |
| Nat. Youth Officer | Ms. Ann Reid | a.purplechair@hotmail.com |
| NATIONAL RESOURCE CENTRE | 01 457 2329 | ||
|---|---|---|---|
| CEO | George Kennedy | gkennedy@sbhi.ie | 087 915 7613 |
| Accounts Manager | Karen Byrne | kbyrne@sbhi.ie | 01 457 2329 |
| Administrator | Kathleen Ashby | kashby@sbhi.ie | 01 457 2329 |
| Receptionist | Rosie Carey | info@sbhi.ie | 01 457 2329 |
| Youth and Respite Services Manager | Wala Brennan | wbrennan@sbhi.ie | 085 711 9087 |
| Youth and Respite Coordinator | Helen Riney | hriney@sbhi.ie | 01 457 2329 |
| Family Support Communications Officer | Sarah Jacobsen | sjacobsen@sbhi.ie | 085 711 9062 |
| Family Support Worker (Mayo/Leitrim/Roscommon/Sligo/Galway) |
Sally Hibbs | shibbs@sbhi.ie | 087 939 5371 |
| Family Support Worker (Cavan/Monaghan/Louth/Meath/ Nth County Dublin) |
Hazel McGeough | hmcgeough@sbhi.ie | 086 819 4790 |
| Family Support Worker (Dublin - odd number postcodes/Kildare) |
Edel Browne | ebrowne@sbhi.ie | 086 852 0616 |
| Family Support Worker (Waterford/Wexford/South Tipperary/ Carlow/Kilkenny) |
Doreen Costello | dcostello@sbhi.ie | 087 652 7175 |
| Family Support Worker (Dublin - even number postcodes/ Sth County Dublin/Wicklow) |
Clare Riordan | criordan@sbhi.ie | 086 819 4791 |
| ORTHOPAEDIC FOOTWEAR CENTRE | 01 457 2326 | ||
|---|---|---|---|
| CEO | George Kennedy | gkennedy@sbhi.ie | 087 915 7613 |
| Manager | Lorna Whelan | lwhelan@sbhi.ie | 086 851 7518 |
| Administrator | Rosie Carey | rcarey@sbhi.ie | 01 457 2326 |
Where we are
GPS co ordinates appear
Lat: 53:19:09N (53.31905)
Lon: 6:25:31W (-6.42524)
