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Family Support Service
The aim of the Family Support 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 also 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. For further information visit the Family Support page.
Youth and Respite Service
The Youth and Respite 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 life, 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 visit the Youth and Respite page.
Advocacy & Lobbying Service
SBHI lobby the HSE, Department of Social and Family Affairs 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.
SBHI ran a successful Folic Acid Awareness Campaign in 2004. It aimed to inform the public about the benefits of taking folic acid every day, in helping to reduce the risk of Neural Tube Defects, such as Spina Bifida. It involved targeting GP’s nationwide, Public Health Nurses, Secondary Schools and Hospitals. The Campaign was proudly supported by Clonmel Healthcare and Superquinn.
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 provided for.
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.
Branch Services
The Branch Services provide a vital link between members, the National Resource Centre and the Board of Directors. Many of the branches organise and run very valuable programs such as computer training, occupational and physiotherapy services and activity based events.
A branch meeting is also an important asset for the association where parents gather together to exchange support and guidance to each other, where members can bring about change by lobbying issues with their committee and where social networking is an essential part of these meetings.
| LOUTH / MEATH BRANCH | |
|---|---|
| Chairperson | Ms. Maidie Kellway |
| Vice-Chairperson | Ms. Anne McGrane |
| Secretary | Ms. Helen Mullen |
| Treasurer | Ms. Tina. Kerr |
| Youth Officer | Ms. Lorraine Gough |
Louth/Meath branch hold regular meetings (usually in Drogheda) where we discuss relevant issues in an informal atmosphere. All members are welcome to, and encouraged to, attend. These meetings are a valuable source of friendship, camaraderie and support. Guest speakers can be arranged on request. It's important that we keep in touch, to let each other know what’s happening locally, and to help each other out when we have problems.
We have a Family Support Worker for our area that is available to help members and to liaise with health officials, schools, employers etc. on our behalf.
We are aware that members look for information on medical procedures, shunt problems, benefits, education, access, transport, travel, socialising, employment etc. Our FSW can be contacted through the branch committee, or directly.
The branch organise social outings and arrange for members to attend respite/independence training, and weekends away. We are also fortunate to own a mobile home in Bettystown, where members and their families can relax for a week during the summer. We have added a 'safe play area' to the rear of the mobile.
We sometimes help with extra tuition for members who are having difficulties at school or who have fallen behind because of illness or hospital admission.
Helen Mullen
Branch Secretary
For further information please contact Helen at helenjmullen@hotmail.com
| WICKLOW BRANCH | |
|---|---|
| Chairperson | Mr. Aiden Kearney |
| Vice-Chairperson | Ms. Thelma Cloake |
| Secretary | Annette Armstrong |
| Treasurer | Laura Armstrong |
Wicklow branch support their members in many different ways. Information and education are readily available. We lend support to our members to attend all branch and national activities.
We would actively encourage participation in social events and also those events which are run to inform on issues such as medical, education, employment to name but a few.
We have a dedicated FSW who works closely with the branch and our members to ensure that they are getting the service and support that they, their families and careers need.
We strive to meet the needs of our members in all walks of life and welcome their opinions and active involvement in the branch. So if it is information or just a friendly ear you need the branch is always only a phone call away.
Thelma Cloake
Vice-Chairperson
For further information please contact Thelma at thelma.cloake@gmail.com
| WEXFORD BRANCH | |
|---|---|
| Chairperson | Mr. Ray Smith |
| Vice-Chairperson | Ms. Bernie Flood |
| Secretary | Mrs. Tracey Kehoe |
| Treasurer | Mrs. Martina Ivory |
| Youth Officer | Ms. Bernadette Flood |
| P.R.O. | Ms. Ann Marie |
Wexford Branch of Spina Bifida Hydrocephalus Ireland is based in the sunny south east and is run by a group of friends for the benefit of others.
The Branch provides physiotherapy and home tuition on a one-to-one basis in the person’s home after a referral has been made to the branch. In the past the branch has organised computer training, also on a one-to-one basis in the home as well as running swimming lessons in the Ashdown Park Hotel on Friday nights.
The Branch has a mobile home in Rosslare Strand, which is available for a week’s holiday or a weekend break.
Raymond Smith
Chairperson
For further information contact the branch secretary, Mrs Tracey Kehoe on 053 91 39868
| KILKENNY / CARLOW BRANCH | |
|---|---|
| Chairperson | Ms. Liz Fogarthy |
| Secretary | Mr. Robbie Roche |
| Treasurer | Mr. John Grace |
| Youth Officer | Mr. Eamonn Cleere (Amos) |
For further information contact the branch secretary, Mr Robbie Roche on 085 7662956
| ROSCOMMON / MAYO / LEITRIM BRANCH | |
|---|---|
| Chairperson | Mr. John Henry |
| Vice-Chairperson | Ms. Amanda Keane |
| Secretary | Ms. Noeline Ruane |
| Asst. Secretary | Ms. Mary King |
| Treasurer | Mr. Liam Newman |
| Youth Officer | Mr. John Murphy |
| P.R.O. | Mr. Dennis Canning |
For further information contact the branch secretary, Ms. Noeline Ruane noelineruane@eircom.net
| KILDARE BRANCH | |
|---|---|
| Chairperson | Mr. John Doyle |
| Vice-Chairperson | Mr. Joe Riordan |
| Secretary | Ms. Irene Doyle |
| Treasurer | Mr. Pete Shinnors |
| Youth Officer | Shirley & Brendan Keogh Ms. Mary Kilgannon |
For further information contact the branch secretary, Ms. Irene Doyle on 045 876284
| DUBLIN BRANCH | |
|---|---|
| Chairperson | Gerard Larkin |
| Vice-Chairperson | Ann Marie Maher |
| Secretary | Louise Gilmore |
| Treasurer | Michael Russell |
| Youth Officer | |
For further information contact the branch secretary, Louise Gilmore on 087 0558377
Publications
Ability Magazine
‘Ability’ is the magazine produced by SBHI for its members. It provides information about current disability issues, upcoming events and gives its members a chance to tell their story.
Information Literature
SBHI is the leading body in Ireland for information, support and advice about Spina Bifida and/or Hydrocephalus. It produces DVD’s, leaflets, posters and booklets on many issues specifically for people with Spina Bifida and/or Hydrocephalus.
