Ability Magazine - Autumn 2013

ability Magazine of Spina Bifida Hydrocephalus Ireland Autumn 2013

SBHI Patron, Packie Bonner, with family and friends at the Packie Bonner Golf Classic in the K Club August 2013.

Chairman’s Address & Contents

Chairman’s Address Welcome to the Autumn edition of our Ability magazine. I know that you all got to enjoy the wonderful weather we had this summer. As we are heading into the winter months with the evenings closing in you might find that you’re not getting out and about as much and it might be time for you to approach your branch with some ideas for activities that you and your fellow members might like to participate in. A number of you are, I’m sure, on Facebook and keep in touch that way but don’t forget to keep up to date with what’s going on in SBHI both locally and at a national level.

We’ve had some changes to our branch committees in the past months and I would like to welcome all the new committee members and thank you all for getting involved. Don’t forget the SBHI Board is here to give you any support you might need. A big thank you, of course, to those who have stepped down, some after many, many years. The work you have done for our members will always be appreciated and your legacy remains for all to see in this wonderful organisation which you all have helped to build.

This October sees the 2nd World Spina Bifida and Hydrocephalus Day, October 25th. I hope that all the branches will organise some events around this time to raise awareness and also some much needed fundraising. Check out this website and see what some other countries did last year to celebrate the first ever World SBH Day – http://www.worldspinabifidahydrocephalusday.com/ In closing I would like to congratulate all our students who sat their exams this year. Well done on your achievements and I hope you did as well as you expected. I look forward to meeting you all at our Annual Conference starting on 4th October and in the meantime stay safe.

– Fiach McDonagh, Chairman Spina Bifida Hydrocephalus Ireland, www.sbhi.ie email: fiachmcdonagh@yahoo.com

Spina Bifida Hydrocephalus Ireland (SBHI) National Resource Centre: Old Nangor Road, Clondalkin, Dublin 22.

Tel: (0I) 457 2329 Fax: (01) 457 2328 Lo-call: 1890 20 22 60 Email: info@sbhi.ie Website: www.sbhi.ie Ability magazine: Editor: Thelma Cloake Tel: 087-2883279 Email: thelmacloake1@gmail.com

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In this issue: l Chairman’s Address

l A Word from our CEO l Annual Conference & AGM l Packie Bonner Golf Classic l Pre-Budget Submission 2014 l SBHI Fundraising l Youth in Action Programme l Voluntary Services International l Peer Support Service l Saturday Over 18s Club l Better Together! l SBHI Away Week l What’s Coming Your Way l Saturday Fun Club with Andrea l International Federation l SBHI National Sports & Fun Day l SHINE 2013 l Family Weekend l Educational Officer Update l Around the Country l Orthopaedic Footwear Centre

A WORD FROM THE EDITOR: I would like to apologise for the poor quality of some of the photos in the last edition due to some technical issues and I have included these pictures again in this edition.

I would like to take this opportunity to thank all those people who contributed to the Ability magazine.

I hope you will enjoy reading this issue.

– Thelma Cloake Tel: 087-2883279 Email: thelmacloake1@gmail.com The Board, National Executive Committee, CEO, staff and members of Spina Bifida Hydrocephalus Ireland would like to express their sincerest condolences to Mr Mohammad Taufiq al Sattar on the tragic loss of his wife Shehnial, daughter Zainab and sons Jamal and Bilal.

Is feidir leo a gcuid eile i siochain.

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A Word from CEO

A Word from our CEO There are two significant events coming up in October that will be of major importance to SBHI. From October 4th through October 6th we will be holding our annual conference at the Clarion Hotel, Sligo. As it is the year of “The Gathering” we have titled the conference “The SBHI Gathering”.

The full programme is included on page 5 in this magazine. It is a full programme delivered in a series of breakout sessions dealing with some of the main issues affecting members and their families. We are very pleased with our line-up of presenters with our highlight being Mr David Hickey, Consultant Transplant Surgeon/Urologist, and Clinical Lecturer for the Royal College of Surgeons and former Dublin Football All Ireland winner.

We also hope that Minister Kathleen Lynch will be able to attend at some stage over the weekend. It promises to be an excellent weekend with a good mixture of interesting learning and plenty of time for rest and relaxation in a very nice hotel.

Then on October 15th the Government will present the 2014 budget to Dáil Éireann. In preelection statements the Taoiseach and the Tánaiste promised they would set as a priority the protection of people with disabilities. To quote directly from the Tánaiste who said, when asked what would be one key social justice issue that he would pursue if elected, “The first area that Labour, in government, would address, in terms of equality and in

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terms of giving decent supports to people would be the area of disabilities. I think as a country, we have to set that as a priority”. The Taoiseach, when asked the same question, replied similarly. These statements were made more than two and a half years ago. It is fair to suggest then that the actions of the Government have not matched their words. The cuts have been very harsh for people with disabilities for a number of years, but 2012 was one of the hardest. Key Government budget plans in health failed to materialise, deficits mounted and the Department of Health cut vital services for people with disabilities. On top of all the cuts that we are so familiar with, people with disabilities have been impacted by cuts to mainstream social and health services. Cuts to child benefit payments, to the fuel allowance scheme, the property tax, water charge, etc. will all affect people with disabilities and their families, in addition to any cuts to disability specific supports.

In the budget of October 15th this year, the Government has the option to take action or to allow matters to get worse. It is not sustainable to have further reductions to disability supports and services. The Government must start planning for the restoration

of support and services including accessible social and public services and work in particular with disability organisations.

Remember that next year local and European elections will take place and this will be the time when the Government’s ambition to protect and support people with disabilities will be seen. It is also the time when people with disabilities and their families can demonstrate their frustration in a very obvious manner. I have released, in late August, SBHI’s position on the upcoming budget and you can read it in its entirety on page 8 of this edition.

Also, I would like to welcome to SBHI our two new FSWs. Áine Harrington has replaced Aisling Joyce in the Mayo, Roscommon and Leitrim Branch area and she will also work in Donegal Branch area as required. Lara Hannah is covering for Clare Riordan who is on maternity leave and will cover the Wicklow and Dublin South branch area. Big thanks to Aisling Joyce for her excellent service and we wish her all the best into the future.

Congratulations to Clare Riordan and Wala Brennan on the births of their daughters. Both mums and daughters are doing well.

Congratulations also to our Educational Officer, Katie Kelly, on her recent marriage to Niall Dunphy.

Finally, our summer project was once again a great success and thoroughly enjoyed by all who took part. We thank all who helped in any way to ensure this success.

– George Kennedy, CEO, Spina Bifida Hydrocephalus Ireland.

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Name:....................................................................................................

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Number of Adults (13 years & over) attending: ....................

Number of Children (12 years & under) attending:..............

Number of Children (3 years & under*) attending: ..............

Number of Wheelchair Users attending:..................................

* Children 3 years & under FREE

_______________________________________________ SBHI BRANCH MEMBERS: Weekend Package (with accommodation): €250 per person sharing Twin Double €325 single room €550 per family (2 adults & 2 children 12 years & under) €15 per additional child (4 years to 12 years) Weekend Package (without accommodation): €160 per person €320 family (2 adults & 2 children 12 years & under) €10 per additional child (4 years to 12 years) _______________________________________________ NON-BRANCH MEMBERS: Weekend Package (with accommodation): €275 per person sharing Twin Double €360 single room €650 per family (2 adults & 2 children 12 years & under) 3< + <:/-=+->6+; 8.(4 years to ;/6+ ;381 al +=2/ €20 per &2/ addition child 12 years) =2381< ;3<2 +66 90 398 t accomm -/6/,;+= Weeken d Package B/+; 6981 (withou odation): < ;/6+8.

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For more information or to book please contact: George Kennedy or Karen Byrne on 01 457 2329.

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/;38 + 1+=2 &23< 3<with Weekend package accommodation includes: 0;3/8.< 363/<to+8.

0+7 2 nights’ accommod ation, 7/7,/;< entrance workshops, meals and entertainment from Friday evening to lunch on Sunday.

Weekend package without accommodation includes: Entrance to workshops, meals and entertainment from Friday evening to lunch on Sunday.

_______________________________________________ Please complete and return to SBHI, National Resource Centre, Old Nangor Road, Clondalkin, Dublin 22, by 13th September.

Method of payment: Cheque or Postal Order made payable to SBHI.

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Annual Conference

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SPINA BIFIDA HYDROCEPHALUS IRELAND

5

Golf Classic

PACKIE BONNER GOLF CLASSIC K CLUB 23RD AUGUST 2013 Although Friday 23rd was a damp, misty day the 200 or so golfers that took to the beautifully manicured K Club golf courses were not put off by the rain.

With only four points between the top five teams on the Smurfit course and only one point between first and second on the Palmer course it was very competitive overall. Many participants commented that although the courses were challenging the quality of the fairways and greens made playing golf at the K Club very enjoyable.

Our Patron, Packie Bonner, played a blinder on our behalf all day from 9.30am when he arrived until late into the night when he concluded with the Auction (Packie you are a natural auctioneer). Packie greeted every team as they arrived and thanked them for supporting SBHI. He also had photos taken with anyone who asked him, mingled and talked around the tables as people had their breakfast baps and coffee and generally made everybody feel very relaxed and comfortable on the day.

The first golfers took to the Palmer course from 11.30am on a time sheet with a total of 15 teams partaking in the inaugural Packie Bonner Perpetual Cup competition.

The other 32 teams present teed off at 1.15pm shotgun on the Smurfit course as the rain showed signs of clearing. As we had two teams on most tee boxes it took around five hours for most teams to complete the course. When everyone had

showered and changed they all gathered in the Palmer clubhouse for the customary after golf meal.

This was indeed the highlight of the day’s proceedings with everyone relaxed and in party mood we endeavoured to relieve our guests of any spare cash they might have left by encouraging them to contribute to our blind raffle. This proved very successful as the grand sum of €2,150 was raised on this alone. After our steak dinner and dessert our CEO George outlined many of the challenges faced by SBHI going forward and thanked the audience for their support today. Our Chairman Fiach McDonagh then thanked all the volunteers who work and support the organisation throughout the country within the branches. He also thanked Packie for his continuing work as our Patron and all of the golfers who took part in the classic. It was then over to Packie to address the gathering and he outlined the reason he chose to become a patron of SBHI. It was all down to a very special young lady in his life and that is his niece Oonagh who is now 18 years old and getting ready to sit her leaving cert in 2014. He stressed the need to continue the fight against the cuts being implemented by the HSE for people with disabilities and their families. He stated very strongly that the work and programmes being run by SBHI were very important to the members and that he

was very committed to making sure that these would be continued. So passionate was Packie that he immediately started to auction three items that had been given to us for the auction and within ten minutes he had netted the organisation €3,450 for these, truly phenomenal.

At the end of proceedings it was down to yours truly to thank everybody on behalf of SBHI for their participation and support.

I want to especially thank all our Sponsors on the day and also our Pro golfer Ciaran Molloy who raised €1,000 at the beat the pro competition on the 17th hole. A special word of thanks to John Lyons and all the staff of the K Club who really pulled out all the stops to make sure everything ran smoothly during the event. It is always risky when you start thanking people individually so to avoid me leaving anyone out please accept my thank you to everyone who in any way helped to make this event such a truly memorable and successful one.

It would be remiss of me not to single out Packie Bonner for special mention as the time and effort he put into this event both on the day and beforehand was truly incredible. Packie is a true gentleman and a great patron for SBHI. Roll on the 2014 Packie Bonner Golf Classic.

– Peter Landy Fundraising Manager 087-7376351

Group enjoying our golfing day out.

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www.sbhi.ie

Golf Classic GOLF CLASSIC RESULTS 2013 SMURFIT COURSE RESULT: 1st Meath Jets 104 points Eamon Porter, Brian Crinion, Dave Nolan, Tom Watters.

2nd Print Boys 103 points John Kavanagh, Freddie Snowe, Tom Gaskin, Joe Murphy.

3rd SAP2 102 points Liam Ryan, Noel Horkan, Mark Coonan, Neil Karran.

4th Paul Boyle 101 points Paul Boyle, Darren Delaney, Liam Delaney, Tommy Grinald.

5th John Dowd 101 points John, Paul, Mark and Garland.

6th Newlands Four Dave McDonagh, Ian Hayden, Seamus Hardan, Noel Mullinan.

Nearest the Pin: Willie Bryan.

Longest Drive: Paul Kavanagh.

Hole in one on the eight: Marcella McCormack.

Youngest Player on the Day: Luke O’ Neill.

Barry, Luke, Alan and John O’Neill with Packie Bonner.

PALMER COURSE RESULT: 1st EMS1 103 points John Cahill, Paddy Cahill, Gerry Guiran, Ben Gough.

2nd The Internationals 102 points Michael O’Connor, Turlough O’Connor, Conor Fortune, David Fortune. n

Conor O’Donovan, George Kennedy, Packie Bonner with Tim Bicknell and Noel Lawlor of Rabobank, one of the sponsors on the day.

Denise Kavanagh, Evan Stack, Packie Bonner, W Sweeney, Vinny Kavanagh, Pat Kinsella.

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Joe O’Mahoney, Packie Bonner, Pat O’Doherty, John McSweeney.

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Financial Update

Pre-Budget Submission 2014  People with disabilities over the past

Prime Time, Tuesday 22nd February 2011).

number of years have been greatly affected by cuts in health services in particular. As many different public bodies, and not the Department of Health alone, fund aspects of the social infrastructure that supports people with disabilities, it is essential that the overall, cumulative impact of budget decisions is explicitly considered.

 SBHI views the Budget as the Government’s expression of its priorities for the coming year. In this regard, we are recommending that the Government: n

Protects the basic standard of living of people with disabilities.

This means recognising the extra costs that people with disabilities incur living in one’s home, in maintaining one’s health, accessing education, employment and in travel.

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Introduces no more cuts to disability services and prioritises investment in community living.

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Prioritises investment in public services to make them appropriate and accessible for people with disabilities including health, education, employment, transport, and housing services.

 Government’s stated policy for tackling poverty and social exclusion focuses on three interconnecting themes, income supports, activation, and access to services.

We know that people with disabilities are disadvantaged on poverty and social inclusion indicators and experience barriers relating to accessing health and education services, and in labour market activation. It is not satisfactory that this should persist in 2013. Instead of tackling this problem, we have seen a steady ‘chipping away’ at the services and supports which form part of the social infrastructure that allows people to live ordinary lives in their communities.

 The ‘chipping away’ at both disability-specific and mainstream supports over the past years represents a complete lack of understanding of the challenges faced by people with disabilities trying to live an ordinary life with health and wellbeing. These include the reduction in HSE funding for disability services, cut to the Housing Adaptation Grant schemes, targeting of the Mobility Allowance and Motorised Transport Grant, reduction in number of Personal Assistance and Home Support hours available, cuts in the Household Benefits Package, threats to Special Needs Assistance in schools, increased prescription charges, increase in the threshold of the Drugs Payment Scheme, rolling back of free GP care for people with certain illnesses and reduction in the Respite Care Grant. In addition, as people with disabilities still face many barriers to participation in education and employment, we

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must ensure that labour market activation measures are open to those in receipt of disability payments. Human rights and social inclusion should not become the collateral damage of this recession.

 The Government must end its contradictory policy of on the one hand having national policy objectives that support community living for people with disabilities, and on the other, implementing continued cuts in funding and administrative practices that undermine community based approaches to services for people with disabilities.

The on-going dismantling of the existing community and social infrastructure makes no sense in the context of the Government’s own policy objectives.

 The inconsistent approach of supporting austerity measures, while at the same time aspiring to be socially inclusive is not working.

 The Programme for Government 2011 stated that: ‘By the end of our term in Government Ireland will be recognised as a modern, fair, socially inclusive and equal society supported by a productive and prosperous economy’. Now is the time for the Taoiseach and the Tánaiste to fulfil their commitment in the Programme for Government to an Implementation Plan for the National Disability Strategy, and to their identification of people with disabilities as their social justice priority (refer Leaders’ Debate on

SBHI can take no further cuts to its funding. Our workload has increased year on year by nearly 100% whilst the rate of Spina Bifida has remained at a level of 1 to 1,000 children born annually. This results in greatly increased costs so we cannot afford any further cuts. Furthermore the paediatric urological problem has not yet been addressed satisfactorily and is still a major issue for many of our members.

There is no proper service to cater for the progression of our members from paediatric services to adult services.

There are other issues effecting people with Spina Bifida and Hydrocephalus which must be urgently addressed as they are having adverse effects on the lives of our members.

We will continue to advocate all these issues at Government level and we ask all members throughout the country to take these issues to your local politicians also.

Now is the time to do this as next year we have local and European elections.

Spina Bifida Hydrocephalus Ireland cannot and will not stand for further cuts to services or funding.

– George Kennedy

www.sbhi.ie

Fundraising

SBHI Fundraising As with all similar organisations, Spina Bifida Hydrocephalus Ireland is presently suffering the pangs of recession and austerity. Our HSE core funding has been cut by nearly 25% and yet the need for our various services has nearly doubled in the past two years.

Peter Landy

Firstly on March 23rd a hardy group of individuals met in the Doolough Valley, Co. Mayo. It was a dry but crisp day with a sharp breeze blowing up the valley from the east. This very enjoyable walk known as the Famine Way Walk brought us from the Delphi Lodge to Louisburgh. It was an enjoyable walk once the cold wind had blown the cobwebs away. At the finish the sandwiches and hot soup were a welcome relief. In the evening the dinner and social chat was very enjoyable and the stories of how fit some of the walkers felt, were enjoyed into the night. Plans are already afoot for a repeat in 2014. It is a very enjoyable weekend and is a great way to start the spring and at the same time get fit.

Second, the “Ability Run” which was held in the Phoenix Park on May 4th attracted more than 300 participants. It was a great success and besides raising funds for SBHI it was a great day out for our members who came from all corners of the country for the day. There was a festive atmosphere in the Park with competitors dressed in fancy dress as well as the usual athletic gear. As this was only the second year of this effort we are delighted with its success and look forward to a bigger and even more successful day next year.

The Packie Bonner Golf Classic was next on the agenda. We officially launched the classic when Packie and I appeared on TV3’s Ireland AM programme on June the 7th. Later that morning Packie appeared on RTE Radio 1on the John Murray show. Miriam O’Callaghan interviewed him. Before he was finished the interview the switchboard in SBHI was jammed with people wanting to take part in the classic. Later the same day Packie along with Niall Quinn and Ray Houghton (all ex Irish international footballers) actually launched the classic to the press and we appeared on Sky Sports News later that evening.

Not alone did it give us a huge audience for our launch but it was a major help in raising our profile. Since June 7th there was a steady amount of applications to take part in the classic culminating in an entry of more than 50 teams. On August 23rd the classic took place on two courses in the K Club and was a huge success. More than 200 golfers took part and financially it was very successful. A great deal of gratitude is due to Packie Bonner who not alone attended but also brought upwards of ten teams personally to play. I hope to build on this success going forward into the future years and make it even more successful in the future.

I will be re-launching our Santa Seeds products into local pharmacies in the coming weeks so watch out for these as they are

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a healthy option and also at the same time will help our funds.

Also World Spina Bifida and Hydrocephalus Day is October 25th and I will be planning some events not only to highlight the organisation and its services but also to again help raise some badly needed funds.

The company SAP has taken SBHI as their charity of the year for 2013 and will be running some events throughout the country in the coming weeks. Activities such as bag packing, torc pin and armband selling and a cycle from Dublin to Athlone are some of the planned activities. The cycle run took place on September 7th and was a big success.

Churchgate collections are on-going in all areas nationwide and more volunteers will be needed if we are to continue to take these up.

Finally at the Annual Conference in Sligo we will be launching our own branch SBHI Irish Pride Watches retailing at €5 each. They are guaranteed latex free and can be worn in sports, swimming, etc. The watches are an ideal gift while supporting a good cause.

These are just some of the activities I have run presently and in the coming months I will have some other projects which I hope will help with our badly needed funds.

– Peter Landy Fundraising Manager 087-7376351

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Youth & Adult

Youth in Action Programme

October 25th, 2013

EUROPA EACEA: The Education, Audiovisual and Culture Executive Agency of the European Union – European Commission http://eacea.ec.europa.eu Helen Riney (SBHI Youth & Respite Services Coordinator) and Helen Walmsley (VSI Volunteer Programme Coordinator) are going on a ‘Feasibility Visit’ with the ‘Youth in Action’ programme to meet with the organisation ‘Tandem’ in Athens to arrange volunteer placements for people with disabilities aged 18-30.

SBHI and VSI will work with individuals on a one-to-one basis to assess individual needs.

The placements are fully funded including travel, accommodation, food and accessible transport. Any requirements and individual needs will be covered.

2nd World Spina Bifida & Hydrocephalus Day There will be a number of events organised both nationally and by individual branches.

Please check for details on our website www.sbhi.ie or our facebook page.

Check out this website for a highly recommended holiday destination…

Tandem works towards the empowerment of socially marginalised groups and their inclusion in society, with a special focus on people with disabilities, the promotion of cooperation, active citizenship, democratic procedures and social involvement and the promotion of European awareness and multiculturalism.

SBHI and VSI will be recruiting for this soon. Watch this space! n

http://www.sveziascandinavia.com/english/

Voluntary Services International the feasibility of the project for possible volunteering opportunities for our members working with other children and adults with disabilities. The project is very beneficial for both the volunteers and the children and adults in the institution. A mentor is also provided for volunteers as well as support provided by two full-time coordinators. Volunteers are both able bodied and disabled.

Helen Riney and Helen Walmsley (Volunteer Coordinator from Voluntary Services International) have been working together for approximately one year to facilitate volunteering opportunities abroad for people with disabilities i.e. members of SBHI. Interest is gradually building among our more independent members in particular and we hope to continue promoting and developing these opportunities into the future.

As part of this progress, we went to Athens in Greece on a feasibility visit from Thursday 5th – Monday 9th September to the organisation ‘Tandem’ who facilitate short-term volunteering opportunities to both able-bodied people and people with disabilities. The organisation embraces cultural differences, disability, economic difficulties, educational difficulties, geographical difficulties, health problems and social difficulties and their primary aim is facilitating potential volunteers with disabilities and facing other forms of social exclusion.

Tandem recognises the enormous benefits of volunteering to everybody and many of their own volunteers and staff have volun-

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The visit and volunteer placements are fully funded by the ‘Youth in Action’ programme and include travel, accommodation, food and accessible transport. Any requirements and individual needs are also covered. teered with people with disabilities. They are motivated towards helping people with fewer opportunities to gain skills and confidence and widen their horizons as well as empowering people to overcome challenges, discover new abilities, reach new limits and see life through other perspectives.

Tandem has a short term volunteering project running since 2002 in KAAPAA in an institution for people with disabilities.

This was the focus of our visit, exploring

The Feasibility Visit included a visit to the institution and learning about the project and the work involved, job shadowing, awareness of the organisation ‘Tandem’, promoting volunteering to people with disabilities, discussions on hosting EVS (short-term) volunteers, discussions on the needs of hosting volunteers with disabilities, practical arrangements and possible adjustments required and interviewing volunteers already in place.

– Helen Riney

www.sbhi.ie

Peer Support Service

Peer Support Service

by Gerry Maguire In October of last year, in conjunction with the Disability Federation of Ireland's Listening and Changing Project, and in recognition of a survey of members taken a couple of years back, Spina Bifida Hydrocephalus Ireland began the process of establishing a Peer Support Service for members. We have made significant progress since then and I wanted to take this opportunity to update you on exactly where we are at.

At the outset, I want to stress that Peer Support is not counselling under a different name. Put simply it is a sharing of life's experiences with others. By this sharing with other people with Spina Bifida and/or Hydrocephalus or, where required, with their families or indeed those who care about them, we can empower both of the people involved in the exchange.

Shortly after our first meeting with the DFI, we set up a group to see how best we could progress the establishment of the service. It was vital that we found out how

the members of SBHI would like to see the service progress. So we set up Focus Groups around the country and listened carefully to your views. It became clear that people wished to see the service operational in two ways – on a one-to-one basis or on a telephone basis. Armed with your input, we set up a Development Group chaired by myself which included members of the Association, the CEO, a Board member, staff from Head Office and a representative from the DFI. We were very conscious that even though our intentions were the best, it was crucial that we approach the development of the service in a thoroughly professional manner. We looked into other Peer Support Services and other similar programmes and took hints and tips from these in order to tailor our service. When we agreed on our requirements, we interviewed Peer Support trainers who would best meet our requirements. I am pleased to say that we have now identified an appropriate trainer and we are in final discussions with him. Our aim will be then to seek volunteers who are interested in becoming Peer Supporters.

We will be doing this over the next few weeks with a view to having a major promotional push for volunteers at the Association's AGM in October. So do think about volunteering! We will then look into running a two day training course in November/December with a view to running a pilot of the service in two branches beginning in January.

I can assure you that all of us on the Development Group are very conscious of how many people want this service up and running. We are determined, however, to do it right so that the service will be there for all time. Remember the service will be run by the members for the members. We have put a lot of time and effort into establishing this service in a proper way recognising at all times the huge responsibility we have in doing right by all members of SBHI. I am confident that when the service is fully operational it will be the envy of many of our sister organisations. Our aim is simple – to try to make the journey of living with Spina Bifida/Hydrocephalus a little easier to travel. n

Can you help?

You may remember that in the last edition of the Ability magazine we mentioned that we had received a lot of letters of a personal nature which we printed and asked for views. We have received many more and here are just a few. As we said in the last magazine, we have decided to have a dedicated section of the magazine and on the website for those who wish to write in with your questions and for those who wish to pass on their advice and suggestions. So get writing!

I have been on dialysis since 2009 due to kidney failure. Dialysis has changed my lifestyle considerably and relationships can be seriously affected as any relationships which I’ve been in since starting dialysis just haven’t worked out. I have often thought about stopping dialysis because of the frustration of it all. I’m also prone to severe pressure sores which have sometimes resulted in me being hospitalised,

www.sbhi.ie

sometimes for long periods. I’m finding now that I don’t go out as much as I used to. I’m fed up!

I have been going out with my boyfriend now for almost a year. We are both wheelchair users. We don’t get to see each other very often as we live far apart. Both of our parents see us as good friends rather than as a couple. This is frustrating because we know how strongly we feel about each other. Although we have difficulties in our relationship due to our disabilities, we are still a real couple. We have been talking about maybe going away on holidays together but our parents are horrified saying that we won’t be able to manage or that they will come with us. It is so frustrating. Why don’t they take our relationship seriously? Have you any suggestions on what we should do?

I have Spina Bifida and am a wheelchair user. I know that I have low self esteem and at times really struggle with my disability. I

have been in a few relationships but they don’t last very long. I have noticed that I am not doing as much as I used to and have started to put on a lot of weight. I live with my parents who don’t know how bad I feel about myself. Any ideas on what I should do? n

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Saturday Over 18s Club

Saturday Over 18s Club Once a month a group of young, enthusiastic adults meet up to have fun and plenty of ‘Craic’!

The Saturday Club has been running for over two and a half years now and has 14 members. We have been to many places including Guinness Hop Store, St. Stephen’s Green for a day in town, Leinster Rugby matches, Fishing, The Laughter Lounge, Shopping Trips and Sport Sessions. Our most recent trip was to Corkagh Park where we used the Cycle/ Wheelchair track to exercise and increase our activity. We then played some Basketball followed by a very competitive game of Bucket Ball. Afterwards a well deserved Chinese Meal was enjoyed in a local restaurant. It was a wonderful day and we plan to have another one like it soon. If you would like to join us at anytime, and you are over 18 please

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do not hesitate to contact Aisling @ 01848 7311. It is a great opportunity to

make more friends and be part of a very active, fun group. n

www.sbhi.ie

VOMPETITION OMPETITION

Better Together 2013

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VIDEO COMPETITION www.sbhi.ie

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My Story

SBHI Away Week – Calvert Trust, Keswick, Lake District, Cumbria England

by Mary DeCourcy Diary of Mary, Aged 572/3 SATURDAY 27TH JULY, 2013 6.30am – Dublin Ferry Port – I never knew that there is a 6.30 in the morning as well as the one at tea time. But here I am waiting for the rest of the SBHI group to assemble. I’m a little anxious as I don’t know a single other person on the trip. It seemed like a good idea weeks back to complete the application form.

The anxiety increases when, as they gather, it is obvious that I am the oldest by quite a few years! I feel like making a run for it, but Ray, my son, has already headed back to Wicklow.

My idea – ‘No need to wait with me, the others will be here shortly’.

There’s an assortment of wheelchairs, luggage, parents bidding farewell and the volume is increasing with the excitement. I am standing off to the side. I watch as friends greet each other with hugs and handshakes.

They all seem so young. When I enquired sometime later, I discovered that I am the eldest by at least 20 years. ‘Feck sake’, says I to meself! Della, the group nurse, comes to introduce herself to me. She is my own age and has the warmest smile. I begin to relax.

Martin, the rowdy bus driver, and Gerry the quieter one, take great care in ensuring that all the people, their luggage and wheelchairs, are onboard the two buses, and secured safely. I was assigned to Martin’s bus. All of this operation is overseen by Rory, the Coordinator. Now, I’m feeling a bit cranky as we wait to board the ferry for Holyhead. I toy with the idea of getting off the bus and getting a taxi back home, too late, we were boarding the ferry. ‘Ah well, best make the most of it’.

The ferry crossing is calm. I get a chance to chat to some of the group and to Della who is all excited at the imminent arrival of her first grandchild. I am already a grandmother to Lisa Mary, so I’m delighted to impart pearls of wisdom. ‘It’s a wonderful new phase in life’. I am starting to enjoy myself. This ‘auld biddy’ will show the young ones how it’s done (Not!) The drive from Holyhead to Keswick, Cumbria, was a mix of motorway and beautiful countryside. I slept a lot of the way, especially after we stopped for lunch at a motorway service station.

Arrival at the Calvert Trust: Founded in 1978, Calvert Trust is the inspiration of John FryerSpedding, whose vision was to enable people with disabilities to benefit from outdoor activities in the countryside. It is a beautiful old

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country house set in the breathtaking landscape overlooking Bressenthwaite Lake.

DAY 1 SUNDAY 28TH JULY – CYCLING AT CARLISLE Wake up call – 8.00am (same time every day).

The group has split into two for most of the activities and I am in the group with Mary A, Marcus, Paddy, Owen and Aisling. Tory is our Calvert Trust Instructor and will be with us for the entire week.

As I zip around the disused airfield at Carlisle, powered by my own hands on my three wheel hand-cycle, I was overcome with emotion. I feel like crying. Never before have I felt such freedom. My necessary walking sticks are safely stored at the bus. The warm rain lashes off my face, the rest of me is covered in wet gear and boots. I race, swerve,

speed up, and even turn a couple of donuts!

Now I understand the exhilaration of speed. I pedal with my hands as fast as I can go, launching myself across the various terrain, I raced against Marcus, Paddy and Mary at different times. I feign crashes and disasters.

Once, too fast downhill, I panicked and almost lost control. I get a fright but am gently encouraged by Tory to go down the same slope again in order to learn about controlling the bike and controlling my fear.

We spend the whole day there and the journey home in the bus is quiet as most people are asleep. ‘Happy tired’ was a feeling I hadn’t felt for a very long time. But I do today.

DAY 2 MONDAY 29TH JULY, 2013 – ROCK AND ROPE I’m sitting in a wheelchair, tethered to a triangular, movable metal structure at the top of a

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My Story cliff, on a wet, rainy Cumbrian morning. Fear lurches right up through me as I look over the edge of the cliff to the valley 70ft below. I am about to abseil down this. Madness! Pure madness, I think. I should be at home knitting something lacy for my granddaughter! I don’t care how lovely the landscape, or that the lush green treetops are almost touchable. I am being hooked up by very experienced people, using a series of clips, knots, hooks and other ‘ropey things’. Tory, Robyn and Dave obviously know what they are doing and do several safety checks. Fear sweeps through me and almost engulfs me. It swirls around my body like a tidal wave rushes to shore. I managed to control it for just long enough to say ‘OK I’m ready to go’. I control the descent, so I take it at a medium pace, wanting to have it over. My bare hands are burning on the wet rope. I reach the bottom, with a surge of adrenalin that allowed the words ‘Can I go again?’ escape from my big mouth!

Rory and Paige, the pretty Australian carer, drag me back up the steep, stony track with a rope attached to my wheelchair. The second descent was just as scary, but I take time to look around and see the trees, birds and shiny mountain rock. I even stop to enjoy the earthy scent of wet moss rising from the cliff face. I learn today that I can trust knots and ropes and the expertise of others and that it’s good to let go and just trust.

Back to base in the afternoon and the sports hall where we all test our physical strength and courage. I climb up the mock-up rock wall with the aid of Tory and Dave. I have never before said to anyone ‘please take my right foot and place it on the yellow thingy’.

Tory did this and placed my weak legs each step up the wall, while I used my hands to drag myself, breathless and struggling, up to the very top and honk the horn just under the high ceiling. A huge cheer went up from everyone below who encouraged and coaxed me each step of the way up. I next do the same journey on the rope ladder, safely secured and supported by Dave the Muscles!

Exhilarated, I reach the top there too!

some play table tennis, others snooker, and I enjoy just chatting or maybe a couple of games of cards. By the end of day two, I am coming to realise that age is not a factor in this group. I give as good as I get in the slagging. I am totally comfortable with these people now. Their wheelchairs have become invisible as their personalities and life stories shine through.

DAY 3 – TUESDAY 30TH JULY, 2013 – WOODLAND WALK AND STABLES One of the main features of this adventure week is the laughter. It flows freely, without malice and with warm-hearted and hilarious teasing of each other. Even though I do not rely on a wheelchair for mobility, I use one when I need to. This is one of those days. We drive up a spectacularly beautiful mountain, stop and have tea and coffee and enjoyed the panoramic views. On the descent, aided by Shane, Paige and Martin, we stopped at the birdwatchers point and are treated to a telescopic view of a pair of Ospreys on their nest in a far off tree. Some way down the mountain is a mock-up of an Osprey’s nest. It is immense. In fact, Martin and Paige can stand up easily in it and even treat us to a blast of the Birdie song!

“The osprey is a fish-eating bird of prey with a five-foot wingspan. There was no record of osprey nests in England since the 1830s until a pair arrived in the Lake District in 2001. Since then the birds have spent the winter in Africa and returned in the spring to nest and rear their chicks”. http://www.lakedistrict.gov.uk.

The Calvert Trust Riding Centre is a short drive from the main centre and is set in leafy, rural roads. A beautifully peaceful place.

Paddy, who never tires of horses and who owns five ponies himself, was in charge of the trap we trotted off on (we were accompanied by an instructor from the centre) the country roads. It was a lovely journey reminiscent of elegant times gone by.

This gentle excursion is followed by my first ever attempt at archery. I love it. Rory and Marcus are the most competitive in the group.

However, in the shoot-out, Marcus proves to be the superior marksman. I come third scoring a respectable 120 points (I think!) I make a note to myself to see about joining an archery club when I go home.

DAY 4 – WEDNESDAY 31ST JULY, 2013 – KAYAKING ON BRESSENTHWAITE LAKE I am very impressed by how much care is taken by the instructors and carers to ensure that all the participants are safe and comfortable in each of the activities. The whole group is together for this day and we are all kitted out in wet gear. It is a beautiful sunny day and the lake is sparkling like an elegant mirror surrounded by verdant forests.

I am on a team raft. The one dedicated as the ‘dry boat’ i.e. no splashing. ‘No splashing, Martin...NO SPLASHING, MARTIN, ya fecker!

I’m soaked to the underwear. Lovely, quiet, gentle Michael faces his fear of water today, and wins! A lunchtime picnic on the shore of the lake and it’s back to the kayak and the fun.

The trip ends with a visit to the Pheasant Inn before heading back to the Centre for dinner, a swim and early night.

DAY 5 – THURSDAY 1ST AUGUST 2013 – ARCHERY AND TEAM CHALLENGE More archery. Mary A proves herself to be an accomplished archer and she gave me some valuable tips. No wonder, she is a teacher of archery in her native Ardee. I will definitely adopt this sport, as it is an equal opportunities sport, with no distinction between individuals with or without disability.

By day 5, I learn something about myself that I never noticed before. I am very competitive! This became evident in the Team Challenge. We’re pitted against the other group, or ‘shower’, as I have begun to call them. We’re handed three sheets of paper with simple questions, certain tasks and

I try to do the trapeze twice, but courage deserts me and I cannot find it in myself to grab the bar and launch myself out across the room. No matter, the challenge this time is to accept defeat. Mary A manages her way three quarters way up the wall, while Paddy did the trapeze twice and, dangling on the support rope below, teases me without mercy, showing me how easy it is. I love you too, Paddy!

On our return to the Centre, I learn that I am not the only grandmother in the group.

Della’s daughter, Aisling, has given birth to a baby boy, Cian. Everyone joins in congratulating and celebrating the new arrival.

Wonderful news!

Each evening, following a swim and more laughter, we all gather in the games room,

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15

My Story other challenges regarding local knowledge.

We’re given two maps, a piece of rope, a camera and some silly clothes. The rope is for measurement, the camera for photos, and silly clothes to persuade a stranger to put on.

It was pouring down rain as we headed off into Keswick. I use a wheelchair today and I am still amazed at how so called ‘ablebodied’ people do not see a wheelchair (I digress). We managed to get the 10 different beer mats, Paddy and I busked ‘Molly Malone’ to some random people and earned £7.68 in 30 seconds. I am good at fundraising! These were some of the more memorable challenges. All in all, it was mighty craic, but unfortunately, the other shower beat us by five miserable points.

In the evening, the whole group went into Keswick to a local pub. The laughter was off the Richter scale. Thank God the chipper was closed on the way home. The food at the Calvert Trust was abundant, rich and very tasty. Tea and toast was the order of the day, back at the Centre.

It is hard to describe the amount of laughter that meshed into the fabric of the week as a whole but this night we told silly jokes, funny stories of our own lives, teased each other and generally gelled the energy of the group.

Shane, Owen and James came into their own and their infectious hilarity left me feeling that laughter truly is the best medicine.

DAY 6 – FRIDAY 2ND AUGUST, 2013 – A QUIET DAY SHOPPING In the morning we’re in the sports hall. I definitely would not try the Big Swing – a contraption into which the willing victim, is securely tied then drawn back up to the corner of the ceiling, or to where they are comfortable. It reminded me of being the arrow in the bow! Marcus, Paddy, Rory, Paige and Martin were daredevils swinging fearlessly through the air. They even incorporated a basketball and attempted to ‘dunk’ as they swung. I know now that I won’t ever be employed by any circus!

After lunch we went shopping to Workington.

I used a wheelchair and the daily challenge of people confined to chairs becomes more evident than ever before. Items too high up on shelves, aisles too narrow and in many places the footpaths are not usable. It’s a challenge in itself to manoeuvre your chair.

DAY 7 – SATURDAY 3RD AUGUST, 2013 – GOING HOME 4.30am wakeup call from Rory, who proved to be a truly great co-ordinator. Assembly in the kitchen with a group of 16 sleepy people.

My feelings are mixed. I don’t want this wonderful experience to end but I am keen to get home and back to reality. The drive back to the ferry is quieter than when we drove the other way. Martin, Rory and

Andrea in the front, Paddy, Aisling, Marcus, Mary, Owen and myself in the back behind the bank of luggage. The ‘other shower ‘are in the bus driven by Gerry, following. We are no longer strangers. We are people who have shared the most amazing experiences.

We have pushed ourselves physically and emotionally and we have formed ties that bind us to each other forever. I thank you all – Rory, Martin, Gerry, Della, Andrea, Paige and Gemma who cared for us with great compassion and dedication and more than a little slagging and teasing. But most especially I salute you, the participants, Paddy, Aisling, Mary A, Marcus, Owen, Daniel, Michael, Shane and James. You have taught me the meaning of courage and determination. Thank you for pushing me, teasing me, for teaching me that I don’t need to fight the label of ‘disability’ anymore. For your encouragement in the face of terror, and helping me to accept that because a challenge is beyond me it doesn’t mean I have failed. You are the most amazing group of people I have ever had the privilege to be part of. And I am so proud to count myself part of this group of people with Spina Bifida or Hydrocephalus or both. You have taught me that the only limits are those we set ourselves.

– Mary DeCourcy m_decourcy@vodafone.ie 087 2824430

Saturday Fun Club with Andrea Bowling

See pages 18-19

Arts & Crafts

Saturday Club participants enjoying themselves

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Keep an Eye Out

What’s Coming Your Way DFI HOLDING MEETING TO DISCUSS NEW BROADCASTING CHARGE The Disability Federation of Ireland is holding a meeting to discuss proposals for the new Broadcasting Charge, examining how it will affect people with disabilities and how it will form part of a social inclusion agenda. The meeting will take place in the DFI Head Office on Thursday, 19 September from 11am to 1pm.

The Broadcasting Charge, which will replace the Television Licence Fee from January 2015, applies to every household in the country. It is set not to exceed the current €160 cost of the Television Licence.

A consultation period for the new Broadcasting Charge was recently announced by Communications Minister Pat Rabbitte. The closing date for public feedback is Tuesday, 8 October. A consultation document has been published online, and submissions can be made by email or by post.

DFI intends to make a submission, welcoming input from members or interested parties. If you would like your views included in this, or to make a booking for the meeting, contact Joan O’Donnell on 01-454 7978 or email joanodonnell@disability-federation.ie.

To access and respond to the consultation document, visit http://www.dcenr.gov.ie/ Broadcasting/Broadcasting.htm. Comments can also be emailed to the Department of Communications at broadcast@dcenr.gov.ie, or posted to PSB Charge Consultation, Broadcasting Policy Division, Department of Communications, Energy and Natural Resources, 29-31 Adelaide Road, Dublin 2. ______________________________________

INTERNATIONAL EXPERT TO DELIVER FREE WORKSHOP FOR FAMILIES A new training programme on individualised ways of supporting people with disabilities, mental health difficulties and dementia will take place in Dublin this month.

The one-day workshop, to be held free of charge in the Red Cow Moran Hotel on 16 September, will be delivered by an international expert in the area, Hope Leet Dittmeier.

It will be hosted by Genio, an organisation promoting constructive change in the disability and mental health sector.

Ms Dittmeier uses an approach known as ‘Social Role Valorisation’ (SRV) to facilitate supported individuals in improving their quality of life. This workshop, called ‘The Usefulness of Valued Roles In Getting A Good Life: What Families Can Do’, is designed to help families explore the actions they can take to enhance the life outcomes of their family member.

Ms Dittmeier explains, “Regardless of their extraordinary effort, many families struggle with the loneliness and lack of opportunity explored by their loved one. In this workshop,

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I will propose that family members explore ways they might invest in a fundamentally different way, rather than a more intensive way”.

The programme will take place between 10.30am and 4pm on 16 September, with a light lunch provided. Places are limited, so applications should be made at http://www.genio.ie/family-workshop as soon as possible. For further information, contact Orlaith Potter of Genio at info@genio.ie. ______________________________________

OPEN TRAINING COLLEGE ACCEPTS APPLICATIONS FOR PROGRAMME Applications are open for a range of new courses on offer from the Open Training College as part of its 2013-2014 Programme.

The college, a division of St Michael’s House which has provided education for people working in the disability and nonprofit sectors since 1992, unveiled its updated programme in July.

Multi-Phase Programme The newly-introduced courses include Conflict Resolution, Person-Centred Planning, Supported Employment, Teaching Independent Living Skills, Supporting Wellbeing in Practice – Positive Behavioral Supports, Online Learning Module (Trainers/Managers), and HIQA Standards Training: Professional CPD Courses.

The courses have been broken down into several phases, each representing a different level of qualification. The phases can be undertaken either independently or as part of a series. This means that those taking the courses can choose to complete them solely through online learning or intensive face-toface sessions, or through a combination of both. The phases are also offered at various price points to accommodate different budgets.

As Dr Karen Finnerty, College Director, explains, this approach allows learners to select the level of training most appropriate for their educational requirements and budget constraints. “If an organisation requires accredited training, we can deliver it. We can offer non-accredited options too. It very much revolves around the specific knowledge demands of the individual or organisation, and what is affordable.”

How It Works The college presents the Conflict Resolution course as an example of its new programming.

Learners can opt to take an online-only, selfdirected module in Phase One, receiving a certificate upon successful completion.

Phase Two involves a one-day management seminar and small group activities, with participants again awarded a certificate. The final phase comprises a fully accredited six-week module which includes seminars, telephone and online tutorials, and assignments, leading to a QQI/HETAC Level 7 qualification.

Applications Applications can be made through the college’s website or by contacting the college to request an application form. The college is also accepting applications for the autumn commencement of the following accredited courses: • BA (Ordinary) in Applied Social Studies (Disability) • BA (Honours) in Applied Social Studies (Disability) • Certificate in Applied Management (Nonprofit/Human Services) • Higher Certificate in Applied Management (Non-profit/Human Services) • BA in Applied Management (Nonprofit/Human Services).

For more information on the new programme and to apply for the courses, visit http://www.opentrainingcollege.com/site/stu dying-at-the-otc. Alternatively, you can contact the college directly at 01-298 8544. ______________________________________

PUBLIC CONSULTATION ON NEW BROADCASTING STRATEGY LAUNCHED The Broadcasting Authority of Ireland (BAI) launched a public consultation on its 20142016 strategy on 27 August.

Established in 2009, the BAI is the national regulator of content across all broadcasting services in the State. As part of its role, it ensures that the broadcasting sector responds to its audience’s needs and remains accessible to people with disabilities.

A draft strategy statement, outlining its objectives for the next three years and its plans to engage with the public and broadcasting sector, has been made available as part of the consultation process. Organisations and members of the public now have until 22 October to respond to the new proposals.

Submissions can be made online, by email or by post.

Speaking at the launch, Bob Collins, Chairperson of the BAI, acknowledged that changes in new media and technology have affected how television and radio output is accessed. The new strategy aims to allow efficient regulation in this new media environment, enabling audiences to guide the work of the regulator more effectively.

Mr Collins stated that “the BAI must ensure that the fundamental interests and entitlements of the viewers and listeners are protected at all times. Working with broadcasters, we must also ensure that broadcasting properly reflects the nature and composition of our society and that the voices of those who are currently often under-represented, including women, are heard”.

The draft Strategy Statement of the BAI – along with supporting information – is available at www.baifuture.ie. Submissions on the statement can be made through the website, by email to info@bai.ie, or by post to: BAI, 2-5 Warrington Place, Dublin 2. n

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Saturday Fun Club

Join Andrea for some Saturday Fun Club Over the past few months the club has been very busy and the numbers of members and their siblings has grown.

The club headed for Dublin Zoo. There was an educational tour booked. The day started off with fantastic weather and a total of 32 children â&#x20AC;&#x201C; members and their siblings, parents and volunteers. After a couple of hours visiting the new arrivals to Dublin Zoo, we all went to the Meerkat Restaurant for a picnic. Everybody had fun.

22nd JUNE: The club had a surprise visit from Mr. Tayto. I had organised that we use Scoil Mochua to do some sporting activities until the star guest arrived. At 12pm Mr Tayto made his appearance into the hall, the children were very happy and excited to see him. After a few photos Mr Tatyo went around the hall and interacted with the children while they were playing their different games.

He finished off his visit by going into the goals as our goalkeeper. The event went into the Gazette paper and the Echo (copies can be got from me).

One of our members, Kate Flanagan, made her Holy Communion. We hope you had a lovely day and Sarah said you looked very pretty. Some of our members had siblings who made both their First Holy Communion and Confirmation. Well done to you all. We canâ&#x20AC;&#x2122;t forget our members who had birthdays over the past month. Happy Birthday wishes go to Keelan Pardy, Sasha Owens, Tom Bayliss and Sophia Keane.

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Niamh McDonagh, one of our volunteers, has gone off for the summer to volunteer in America. She will be missed and the club wishes her all the best on her travels.

Niamh Galvin and Clodagh McClean are also off to work and volunteer, you will all be sadly missed by the club and look forward to seeing you all very soon. A huge thank you goes to all of the volunteers who kindly give up their Saturday to help make each week fun.

6th JULY: The club had a magic and puppet show. Paul our magician arrived at 11.30am to the portacabin and began the morning with a punch and judy show. The excitement and joy in the faces of the children was fantastic. He later went on to do some magic tricks.

All of the children took part in the day.

We later went outside into the playground of Scoil Mochua where we all had fun and games.

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Saturday Fun Club

Above: Mr Tayto visits Saturday Fun Club.

13th JULY: We went to Clonfert Pet Farm, past Maynooth. The children spent their morning petting and feeding the different animals before taking a wellearned lunch break, and afterwards we got onto the bouncy castle. The weather was fantastic and everybody went home at 5pm.

20th JULY: Our final club for the summer was Saturday 20th July; the theme for this week was cookery and arts & crafts.

Starting from this September I will be organising either an outdoor or in-house event every three months for the club.

All of the outings and events will be fun and educational. I am also going to introduce computers back into the club, this will give the children a chance to learn new skills and work on areas of difficulty through fun-based educational software.

(Sports & Family Fun Day, venue to be confirmed).

28th September 11.30pm to 1.30pm (NRC, Clondalkin).

12th October 11.30am – 1.30pm (NRC, Clondalkin).

26th October 11.30am – 1.30pm (NRC, Clondalkin).

9th November 11.30am – 1.30pm (NRC, Clondalkin).

23rd November 11.30am – 1.30pm (NRC, Clondalkin).

30th November 11.30am – 1.30pm (NRC, Clondalkin).

14th December 11.30am – 2.30pm (NRC Clondalkin, Christmas Party and Arts & Crafts).

Contact Details: Andrea Fox (National Youth Officer) National Resource Centre Old Nangor Road Clondalkin Mobile: 087 1363264 Phone: 01-4572329 Email: andreaf28@sbhi.ie n

Looking forward to seeing you all on September 14th and we run every 2nd and 4th Saturday of the month 11.30am to 1.30pm.

For further details please contact Andrea @ 087 136 3284. Email: andreaf28@gmail.com and keep in touch through our link on the SBHI Facebook page.

Club Dates from September – December 2013: 14th September 12pm - 4pm

www.sbhi.ie

Punch & Judy Show, 6th July.

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International Federation

International Federation IF'S 24th INTERNATIONAL CONGRESS 2013: UNITE & SHARE

wished for more" announced outgoing IF President Pierre Mertens.

IF’s 24th international conference “Unite & Share” that took place in Izmir on 28 and 29 June was a great success and was wellattended by representatives of IF member organisations and local people engaged in the field of Spina Bifida and Hydrocephalus.

Participants from all over the world gathered in Turkey for two days to share the latest information. The conference was organised around lectures, creative and thematic workshops and networking activities. Numerous members attended IF's Workshop on Fundraising for Non-Profit Associations. Special honour was given to parting IF President Pierre Mertens, for his dedication and his relentless efforts to improve the lives of those born with Spina Bifida and Hydrocephalus.

Inspired by his daughter, Liesje, he became committed to IF and initiated various successful programmes for international solidarity, inclusive education, and art and disability projects. Under his leadership IF grew from a small federation to an internationally recognised NGO with professional staff and stable funding.

You can see all recorded material on IF's YouTube channel.

See more at: http://www.ifglobal.org/en/home-en/7news/707-ifs-24th-international-congress-2013unite-a-share#sthash.4Kf2Sv30.dpuf

IF ELECTS NEW BOARD MEMBERS AND PRESIDENT During its General Assembly held in Izmir, the International Federation for Spina Bifida and Hydrocephalus (IF) elected Margo Whiteford as its president for the 2013-2015 period. She succeeds Pierre Mertens at the expiry of his statutory term of office which he performed since 1995. Pierre will continue his work in the field of Spina Bifida and Hydrocephalus as director of Child-Help, a Belgian NGO. Margo will assume her new role on 29 June 2013.

Pierre Mertens recipient of the IF Award 2013.

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The newly elected members of IF's Board are: • Dr Santosh Karmarkar (India): representing the Indian Spina Bifida Association.

• Lumbwe Chiwele (Zambia): representing the Zambian Spina Bifida and Hydrocephalus Association.

Margo Whiteford from the Scottish Spina Bifida Association has been elected as next IF President.

Holding the position as Chairperson of the Scottish Spina Bifida Association for eight years, and having become its medical advisor, Margo Whiteford has regularly proven a great expertise and is in contact with various disability support groups and voluntary organisations.

She was born with Spina Bifida, and now works in Glasgow as a consultant clinical geneticist, with an interest in the aetiology of neural tube defects. Through her clinical practice Margo meets many people with Spina Bifida and/or Hydrocephalus of all ages.

"I'm happy to be taking on the leadership of IF when it has been built up to such a healthy state by the two Presidents who have gone before me. As a person with Spina Bifida who is also a doctor and Chairperson of a Spina Bifida association, I hope to be able to draw on my own experiences, to help improve the quality of life for other people with Spina Bifida and Hydrocephalus all over the world. I realise that leading an international organisation will be a challenge but I am lucky in having Board members from four different continents, and from a variety of backgrounds to support me in this task. With the development of PUSH it will be exciting to watch the IF community and network expand and I look forward to being part of it," said Margo Whiteford after the elections.

"It is with great faith that I hand over this function to Margo. The background of the first two chairpersons was having daughters with Spina Bifida. The next president IS a daughter with Spina Bifida. I could not have

• Emine Nurdan Anli (Turkey): representing the Turkish Spina Bifida and Hydrocephalus Association.

• Maarit Fjellhaug Nylund (Norway): representing the Norwegian Spina Bifida and Hydrocephalus Association.

See more at: http://www.ifglobal.org/en/home-en/7news/708-if-elects-new-board-members-andpresident#sthash.EQCG6ZTi.dpuf

CONSULTATION FOR WHO DISABILITY ACTION PLAN WHO is organising a series of global and regional consultations on the draft plan during the third quarter of 2013.

As part of the process of developing an action plan to ensure better health for people with disabilities, WHO has launched an online consultation process until 11 October 2013.

The draft action plan is available on WHO's website in Chinese, English, French, German, Spanish and Russian with Arabic coming soon. The draft action plan will also be available in international sign language. The online consultation is open to everyone interested in improving health outcomes for people with disabilities.

People with disabilities, disabled peoples' organisations (DPOs) and civil society organisations (CSOs) are particularly encouraged to submit their views on the draft plan, as are international development agencies and professional organisations and service providers involved in the delivery of rehabilitation services See more at: http://www.ifglobal.org/en/#sthash.AOqOkTL m.dpuf n

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Sports & Fun Day

SBHI National Sports & Fun Day Calling members of all ages, families and friends to reach the finish line @ Athlone Institute of Technology Dublin Road, Athlone, Co. Westmeath on Saturday 21st September 2013 Registration: 10am. Programme of Events: 10.30am – 4.30pm.

Register now for a fun filled day of sport for all Contact Louise or Helen @ the NRC Text: 085 711 9087 or Phone: 01 457 2329 or Email: lhealy@sbhi.ie or hriney@sbhi.ie Please note: All under 18 year olds must be accompanied by an adult.

Admission charge on the day: €5.00 single, €15.00 family (max 2 adults and 3 kids) Bring a packed lunch, or small canteen available on premises.

If you require transport you must notify your local branch well in advance.

Wear your county colours if you dare!!!!!

www.sbhi.ie

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SHINE

Lemongrass Weekâ&#x20AC;Ś

Shine Sandalwood

Hannah Landy

Reece McVeigh

Eanna Sheeran Osas Igbinadolor, CJ Melia

Ruth Barron, Mark O'Sullivan, Niamh Galavan

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Daniel Jordan, Ciaran Bailey, Sean O'Ke Amos C

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SHINE

2013

Lavendar Week…

Week…

Avril Jordan

Aine Flanagan

Jessica Bingham

Anthony Hynes

elly, Daniel Riordan, Kamil Zakrzewski, Cleere.

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Orla Mulligan

Rhoda Murphy, Anthony Hynes

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Family Weekend

FAMILY WEEKEND Top left: Dennis (Animal Magic), Emily-Rose Scally, Abigail Seagrave-Daly, Anna McDonnell, Laoise Flynn, Lara and Rosie (Animal Magic) all holding a snake. Top right: Siobhรกn Guerin. Below left: Ian Flynn and his mum Patricia signing the group's activity jigsaw on the Sunday morning. The jigsaw was kindly donated by Rory Glover (www.kildarepuzzles.ie). Below centre: Emily-Rose Scally trying out the junior stilt walking at the children's Saturday night entertainment. Below right: Sarah and Luca Keogh with Dennis and his owl from Animal Magic.

Bottom: The McDonnell and Scally Families.

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Education

Educational Officer update The summer has been a deceptively busy one for the Educational Officer between planning to visit new schools, drafting policies and procedures and starting development work on the website.

Katie Kelly, Educational Officer.

WEBSITE REDEVELOPMENT:

SCHOOL SESSIONS: The new academic year is already looking busy and has the potential to be even busier for the Educational Officer with school visits planned in many areas of the country already from Cork to Donegal and from Galway to Wexford. The sessions include creating awareness about the conditions Spina Bifida and/or Hydrocephalus and also discussing teaching strategies and ideas that would facilitate the inclusion of children with the condition in all aspects of education and school life. Feedback from schools who have participated in the sessions has been extremely positive, with many teachers taking some ideas from the session to help improve the educational experience of the students in their school. If you would like the Educational Officer to visit a school or college in your region please do not hesitate in contacting her using the details provided below. In addition to school visits the Educational Officer will be running awareness sessions in Educational Centres in many areas of the country.

PEER SUPPORT: The Peer Support programme is discussed in this edition in greater detail by the Chairperson, Gerry Maguire, but I must add that it has been a pleasure working on this project and seeing the huge progress being made by the development group. A lot of work has been put into this project to date in sourcing trainers, developing policies and procedures, etc. All of the members of the committee have been fully committed to seeing this programme work. It is a programme conceptualised by members, developed by members, the peer supporters will be members and it will be essentially for members.

SHINE: This summer has been a wonderful opportunity to work with the Youth and Respite team on the SHINE programme. This year, as with last year, the Educational Officer was involved with training the volunteers alongside SBHI members and experienced disability awareness tutor, Frank Larkin.

The new challenge this year was the talk on Independent Life Skills. The talk was just an overview of some of the skills that an individual would need to have or

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home. Just remember that even the smallest step in becoming independent is a big achievement that all members should be immensely proud of, best of luck everyone!

develop in order to live independently e.g. money management, healthy eating and meal planning, daily planning, mindfulness, household chores etc. I would personally like to thank Micheline Clancy, Karen Gibney and Louise Larkin for giving their own personal experiences and discussing some of the challenges they have had to overcome in order to live independently. I would also like to thank many of the participants for engaging with the session and asking some very interesting questions.

Many of the participants believed that independence was about making your own choices, managing aspects of your own life, being treated like an equal adult etc. I wish every success to those adults who are starting their journey in becoming independent or for those who wish to utilise some of the skills whilst living at

SAP announced in 2013 that Spina Bifida Hydrocephalus Ireland would be their chosen charity to work with. SBHI were of course delighted with this! Being such a large international company involved with software design it was opportune that they could have a look at our current website and suggest some changes or improvements. The current website is a fantastic resource for individuals, parents, professionals, potential volunteers and potential fundraisers as well as the general public who are interested in finding out more about the conditions. Like any form of technology things can be upgraded with new technology to improve accessibility and interaction. The information on the website is absolutely invaluable and will be a key feature of the new website design.

Some of the main features of the new website will be in the ease of use, accessibility, having a new section for an online shop, having a new section for the peer support programme, mapping of services and supports and interactive news. The website redevelopment is a huge piece of work and will be a massive project for the Educational Officer due to the short timeline of the project. It is, however, very exciting to be working on this project with professionals from SAP. n

2013 Strasbourg Freedom Drive September 12, 2013 The 2013 Strasbourg Freedom Drive takes place from the 9th-12th September 2013. Included in this year’s events is a Freedom Drive Conference, a march to the European Parliament and meetings with Members of the European Parliament. This year is the tenth anniversary of the Freedom Drive and we invite everyone to participate this year.

–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––– Upcoming event:

Eighth Annual Implementation Meeting of the Declaration of Principles for International Election Observation Warsaw, 17 September 2013 – 19 September 2013.

––––––––––––––––––––––––––––––––––––––––––––––––––––– Mr. Frank Larkin will be attending both of these events and a full report will be available in the next edition of Ability… watch this space!!!

Frank Larkin

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Around the Country

Around the Country DUBLIN Activities were somewhat put on hold for the months of June, July and August for summer holidays. However the monthly evening out continued on the last Saturday of each month. This night is gaining in popularity every month with almost 20 people now attending. To add interest to the night we will visit more venues in the future. Contact any of the committee, or Vickie in the Dublin Branch (01-8485227) for details. Karen Gibney is our chief organiser and a great deal of thanks is due to her for making this such an interesting and enjoyable night.

Thirty-two of our Branch members attended the Shine Summer Project this year. A mixture of members attended each week including the ‘Away Adventure Week’ in The Lake District in England. The weather for each week was spectacular and all members thoroughly enjoyed their break. A big note of thanks to Louise and Helen whose hard work made things so beneficial and enjoyable for all.

Cheryl Rego will be giving a talk to members, parents and carers on the necessity of good nutrition in the near future. Please look out for details of dates and location.

Fundraising is hugely important to ensure we can pay for the various activities that are so necessary for members. Church gate collections will be coming up soon and we need collectors badly. If interested please contact a member of the committee. We will be holding a table quiz on the north side of the city in late September. Again, contact your committee for details or Vickie in the Dublin Branch (01-8485227).

The Conference this year will be held in Sligo on October 4th through 6th. If interested in attending contact one of the committee members without delay or Vickie in the Dublin Branch (01-8485227).

The programme of events is absolutely fantastic with a great measure of interesting topics coupled with plenty of R & R time mixed in as well. I hope to see you all there.

A meet and greet day, in conjunction with the Wicklow Branch, will be held in the Glenview Hotel on Sunday 15th September from 1pm to 3pm, by Lara Hannah, temporary replacement for FSW Clare Riordan. There will be an opportunity to hear from Gerry Maguire and also to meet with Frances Halligan on this day. n

Congratulations…

The Board and staff of SBHI congratulate both Clare Riordan and Wala Brennan on the recent birth of their daughters.

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YOUR FAMILY SUPPORT TEAM: ________________________________

EDEL BROWNE (North Dublin City/Kildare) ebrowne@sbhi.ie 086 852 0616 ______________________________ SARAH JACOBSEN (Westmeath/Longford/Laois/Offaly) sjacobsen@sbhi.ie 085 711 9062 ___________________________ CLARE RIORDAN (South Dublin City/South County Dublin/Wicklow) criordan@sbhi.ie 087 220 9625 LARA HANNAH Covering for Clare Riordan 087 220 9625 ______________________________ AINE HARRINGTON (Mayo/Leitrim/Roscommon/Sligo/ Galway/Donegal) aharrington@sbhi.ie 087 939 5371 ______________________________ JUDY LONG (Waterford/Wexford/South Tipperary/ Carlow/Kilkenny) jlong@sbhi.ie 087 652 7175. ______________________________ HAZEL McGEOUGH (Cavan/Monaghan/Louth/Meath/ North County Dublin) hmcgeough@sbhi.ie 086 819 4790 ______________________________ DEIRDRE GALLAGHER (Cork/Kerry) dgallagher@sbhi.ie 086 819 4791. n

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Around the Country

MAYO/ROSCOMMON/LEITRIM/ SLIGO/GALWAY/DONEGAL Hi Guys.

My name is Aine Harrington and I am the new Family Support Worker covering the West of Ireland and Donegal. I graduated in 2011 with a BA Honours Degree in Social Care practice. I have also completed various courses and volunteer work to enhance my career and to educate myself about the challenges that face people. I have worked in various areas of Social Care, such as mental health, with young people in a youth club setting, social work department, and with the travelling community, however most of my experience has been working with people with Spina Bifida/Hydrocephalus and varying disabilities. I have a lot of experience, however I am looking forward to being challenged in my role as a Family Support Worker, and learning from my members the best ways I can support them.

During my first three months I have been busy introducing myself to all my members.

This has been very interesting and informative, I am looking forward to getting to know everyone a lot better and supporting my members with any issues or concerns they may be experiencing.

My office is based in Roscommon town. I am there about two and half days a week and members are more than welcome to make an appointment and come and see me, if they wish. During the other two and half days, I am on the road meeting my wonderful members. I have had the opportunity to meet people from Mayo, Galway, Sligo, Leitrim, Donegal and Roscommon, all of whom have been very welcoming and open to the service.

During my first three months I have also had a chance to check in with the branches in the area, and see all the wonderful work they do.

Both the Donegal and Mayo Branch do great work and I am looking forward to working closely with them during the year.

In the upcoming months I hope to establish some more adult social groups, as these are a wonderful way to get together and meet other members, in a relaxed setting. I also hope to set up some courses that adults can both attend and enjoy. Along with the branches we hope to organise a family weekend in Mayo, and some more family days where both the children and parents can have a day out.

I am very approachable, and will deal with

WE HAVE RELOCATED

GALWAY CLINICS/VISITS

The office for Spina Bifida Hydrocephalus Ireland for the West and Donegal has relocated to Roscommon town. It is located in the centre of town in the Primary Care Centre, there is plenty of wheelchair parking, and itâ&#x20AC;&#x2122;s an easy and accessible building.

I will be in Galway once or twice a month. I will contact everyone in advance of my visit to Galway, and if anyone wishes to meet me during this day, please contact me and we will arrange a time and convenient place.

Please contact me at the contact details below for an appointment or visit.

SLIGO CLINICS/VISITS Clinics are held on the second Tuesday of the month, in the Glasshouse Hotel, Sligo. Please contact me if you are unable to attend the clinic and we may be able to arrange an alternative.

I am looking forward to setting up an adult social outing in Galway in the next few weeks, depending on interest. I am liaising with Speeders in Galway, who have an interest in sporting activities, to support all our young members in Galway and surrounding areas.

MAYO COFFEE OUTINGS

The Conference is coming up during the first weekend in October and this is a great opportunity for everyone to get together. I look forward to seeing a big contingent of Sligo members as it is going to be right on our doorstep.

I am hoping to set up a get-together with adults and children in the next few months, at a time that suits people. For the younger members, it will give them an opportunity to mix with each other and play, and for the adults it will give us a chance to chat and discuss any issues and concerns. During these events I intend to organise a guest speaker on a subject of interest.

A number of members have expressed an interest in starting up a Cookery Course.

Anyone that would like me to look into it please feel free to contact me.

During August the Mayo Branch organised a Family Day which was held in Castlebar, where families and children had a lovely day out before they went back to school with Bowling/

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Aine Harrington any families issues or concerns professionally and realistically, I am looking forward to meeting all my members, please donâ&#x20AC;&#x2122;t hesitate to contact me.

Aine Harrington: 087 939 5371 Email: aharrington@sbhi.ie

Cinema and Lunch, great fun was had by all. At the moment the branch is trying to organise a family weekend for members, I will work closely with them around organising this.

DONEGAL I spent a week covering Donegal in July where I had the opportunity to meet most of my Donegal members. I will continue to be in Donegal/Letterkenny about twice a month.

These visits are a great opportunity for members in this area to come and speak to me, I am also looking forward to working closely with the members to help them with any issues or concerns they may be experiencing.

Donegal had a very successful churchgate collection where they raised much needed funds for their branch. I intend to support the Donegal Branch to set up some social events for their members during the year.

Congratulations to Frank Larkin who is involved with the Donegal Branch, he is off to Strasbourg and Warsaw to talk about Disability Hate Crime, we would all like to wish him luck, and enjoy the trip.

You can contact me on 087 939 5371 or email: aharrington@sbhi.ie

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Around the Country “NA CLUICHÍ SPEISIALTA” LEIXLIP 2013 Some of the members of the Kildare Branch of SBHI took part in the Cluichi Speisialta or LTCS Special Games which was organised by the Leixlip Town Twinning Association.

The Kildare Branch participants were: Olivia Delaney, Liz Scully, Gerard McLoughlin and Anna Shinnors, with volunteers, Teresa Conroy, Jack Ryan, Sean Farrell and our amazing driver Martin Fahey who was the life and soul of the party.

This event was held from Friday August 23rd until Monday August 26th of this year.

Athletes with disabilities travelled from France, Scotland and Norway to join the Irish athletes to take part in sporting events throughout the weekend. This was carried out as part of the twinning of Leixlip with Bressuire, France.

This was the first time for Leixlip to hold this event. The last time this event was held in Bressuire, with some of the members of the Kildare Branch travelling to Bressuire for the games.

The athletes from overseas arrived on Friday and the first event that involved the Irish athletes was the welcoming ceremony in St. Mary’s GAA club on Friday night

KILDARE where there was some musical entertainment for everyone involved. This gave a chance for all the athletes to meet each other before the games started on Saturday morning. Accommodation was provided for the athletes in Maynooth University apartments.

On the Saturday morning there was a parade for the athletes through Leixlip Main Street and then the teams were assigned and the group was split in two. Half of the teams spent the morning taking part in sporting activities in Confey GAA Club and half in Leixlip Amenities Centre. The groups then swapped venues in the afternoon following lunch in St. Mary’s GAA Club. The sports involved on the day in both venues were bocce rules, airsoft target shooting, target hurling, quoits game, petanque (soft bocce), and target penalty shoot. There was very much a fun element to the games as well as skill and there was a focus on participation.

On Saturday night there was a gala dinner held in the Springfield Hotel, Leixlip, followed

by a night of musical entertainment and dancing which was thoroughly enjoyed by everyone who attended.

Sunday morning was another early start which began with a game of ten pin bowling in Leisureplex in Tallaght. This was again followed by a lovely lunch in St. Mary’s GAA Club, Leixlip. The athletes were then given organised free time which involved a trip to Blanchardstown Shopping Centre. Following this the group returned to St. Mary’s GAA Club for the awards ceremony for the teams followed by another evening of musical entertainment and dancing. This involved a dance done by the French team and then some local Irish ceili music and local Irish dancers. This night ended the Irish athletes’ involvement in the games as the overseas athletes returned home on Monday 26th.

This weekend was a really enjoyable event and everyone is already hoping for the next one to be held in two years time! For the record, the Kildare Branch members gave a good account of themselves and kept up their record from their last games of having one of their members on the winning team.

– Anna Shinnors

Cluichi Speisialta 2013 – Flags of every country taking part: France, Ireland, Norway and Scotland.

The Kildare SBHI group minus Anna Shinnors getting ready for the parade.

The Kildare SBHI group.

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Gerard McLoughlin taking part in sports.

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Around the Country

KILDARE

(CONTâ&#x20AC;&#x2122;D)

Mary Fitzsimons and Ger Brady with members of Kildare Branch.

Liz Scully, Nessa Ashe and Julieanne Bell at Christmas Party 2012

Presentation to Margaret and Sean O'Gorman The children enjoying Reuben the entertainer at Christmas Party 2012

The Lalor family and Santa Aiden Lalor, Joe Murphy, Margaret Murphy, Pete Shinnors, Joanne Murphy, Bryan Dunne, Anna Shinnors at Christmas Party 2012

Conor Prendergast with Santa

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The Delaney family enjoying the Christmas Party

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Around the Country Health and Fitness Course This course ran for 6 weeks. The course included topics such as nutrition which included some healthy and tasty recipes for the group to try out, and easy-tomake healthy snacks which were good alternatives to microwave meals.

LOUTH - MEATH

Another very important topic covered was health and fitness. This included tips on different ways to exercise and keep fit. We also had some very challenging circuit training sessions which were great fun. We also learned how to check our pulse and heart rate. The members that took part in this course found it great fun and also very beneficial in leading a healthy lifestyle.

Tayto Park The Louth-Meath branch had a family fun day in Tayto Park on Thursday 22nd of August. This event was very well attended by members of the branch. It was a great opportunity for members of the branch to meet up and everyone really enjoyed it!!

UP AND COMING EVENTS Cookery course Commenced Wednesday 28th of August in the IWA Centre, Ardee, from 6.30pm.

All Louth/ Meath members welcome!!

Contact Hazel McGeough FSW or Mary Aylward, Youth Officer, for more information.

Louth-Meath Branch members out and about with Mr Tayto.

Jewellery making night Taking place on Thursday 14th of November in IWA Ardee at 6.30pm. Are you looking for that special Christmas gift for that extra special person in your life? Well come along to this fun night and hand-make something special for someone you love.

Kids fun club!!

Following the success of the Saturday Fun Club which is being run in The National Resource Centre by our National Youth Officer, Andrea Fox, I am writing this piece in order to get some feedback on whether it would be beneficial for a similar club to be set up in the Louth-Meath area. Members and parents who attend this Saturday Club have found it to be very beneficial as it has helped in the children’s development and social skills through involvement in activities such as arts and crafts and making new friends.

If you would like your son/daughter to be a part of this fun club or if you would like more information about it please don’t hesitate to contact me on 0876007410 – Mary Aylward

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Around the Country

Thank You… The Louth-Meath Branch was very sad to see the stepping down of the existing committee at this year’s branch AGM. For many, many, years the branch and its members were extremely well looked after by a super group of ladies:

Louth-Meath Branch family fun day in Tayto Park on Thursday 22nd of August.

Madie Kellaway Helen Mullen Ann McGrane Ann McLoughlin.

Over the past numbers of years they were also greatly supported by Tina Kerr.

The ladies were responsible for organising many fine events that were really enjoyed by the branch members and their families. They were instrumental in purchasing and locating the mobile home where members can enjoy holiday breaks.

We, the new committee, and all the branch members and their families wish to thank you for all the great support over the past number of years. We value your experience and know we can count on your support as we bring the LouthMeath Branch forward.

The new committee: Michael Campbell Catherine Campbell Fiona McDonald Siobhan Burke.

We hope for continued support for our future projects and fundraising events from all branch members and their families.

– Louth/Meath Branch Committee

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Around the Country

CORK / KERRY Hello from Cork.

We have had the services of a Family Support Worker in Cork for the last year. This service has been operated

by Deirdre Gallagher. She has proven to be an energetic lady in this job and has travelled the length and breadth of the county.

The young adult group has been meeting the first Friday night of each month, the group attended the Grease concert over the summer in the Cork Opera House. This group is working on a newsletter that will be sent out via email to all of the members.

Over the summer the younger members attended the Enable Ireland Driving Licence Club in Cork and The Rebel Wheelers Sports Club camps. A good time was had by all.

Marie and Majella

Jenn and Niamh

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On a serious note we need to be aware that services are being reduced, physiotherapy, speech and language and education supports are being reduced. We need to spend the money on service now to help reduce serious health issues for our children in the future. n

Jen

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Above left: Darragh O’Regan and Cian O’Neill. Above right: Don. Below: The boys!

CORK YOUNG ADULTS GROUP An adults group is held in Cork city on the third Friday of every month. The exact location changes from month to month but it always promises to be a great night out and is organised by the members. It can include bowling, cinema, meals out and, of course, drinks! Day trips have been organised to the likes of Fota Wildlife Park and the Model Railway Village in Clonakilty.

We are currently making plans for future trips.

We have put together a committee to complete a newsletter for Cork Spina Bifida and Hydrocephalus Association and hope to publish our first one before Christmas.

Included will be an article covering different topics from each member and also photos depicting the events, trips and achievements of members from right across the county.

Coming up: Cork Mini Marathon Paediatric First Aid Course Night at the Dog Track Ladies who Lunch Quiz Night in Douglas GAA Club.

Please contact: Deirdre Gallagher 086 8194791.

The Cork Spina Bifida and Hydrocephalus Association meets up once monthly in the Abode Centre, Skehard Road, Cork. This is led by Chairman Mike Dineen and supported by Secretary Valerie Hennessy and Treasurer Gerard Cronin.

Well done to Darragh O'Regan and Cian O'Neill, both members of SBHI, who received awards in basketball earlier this year. Darragh received the young player of the year award whereas Cian won an all-

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star award for his outstanding play. The boys play with the Rebel Wheelers basketball team who also play lots of other sports including rugby, hurling, floor volleyball, track and field events such as javelin, shot putt, discus, boccia and track chairs. Individual sports include karate, archery, hand cycles, sailing and table tennis. To find out more, please see www.rebelwheelers.com.

KERRY A coffee morning for mums is currently being held in Tralee, Co. Kerry every Tuesday morning. The location changes from week to week but I would like to encourage all to attend. Here you will get the opportunity to meet other mums in

your locality and to share your experiences and perhaps even form a new friendship or two. We are planning to have guest speakers and figures of interest in attendance in the coming months. If you are interested in attending, please call or text Deirdre Gallagher 086 8194791.

We hope to strengthen links and services in the Kerry area by bringing families together and by letting YOU have your say. Please get in touch.

We are planning a conference in the Kerry area in the coming months so if you have any issue or area that you would like covered at it please let me know.

– Deirdre Gallagher

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SOUTH EAST WEXFORD: Young adults support group recommenced on Thursday 5th of September in The Bailey Restaurant, Enniscorthy, at 5pm. Any new members that are not on my contact list and wish to attend are asked to contact Judy on 087 6527175.

TIPPERARY: The Tipperary branch of SBHI recently held churchgate collections. They proved to be very successful. The Tipperary branch is urgently seeking volunteers to help out with future churchgate collections in the Tipperary area. If any of you wish to help out could you please contact Maeve Withero (087 2750290) for further details.

WATERFORD: Upcoming sports day is on the 21st of September in Athlone IT. I am hoping to run a bus from Waterford city to the event. Any members from Waterford wishing to attend could you please contact Judy on 087 6527175 to arrange a place on the bus.

CARLOW/KILKENNY: Any members wishing to attend an essential cookery programme in Kilkenny are asked to express their interest to Judy. This cookery programme will run over 10 weeks at a minimal cost to the participant.

– Judy Long

FOTA WILDLIFE PARK: Above – Wexford Branch families. Below left – the Flood gang. Below right – Ray, Peter and Ciaran taking a break.

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FOTA WILDLIFE PARK: Above left – Wexford members having fun.

Above right – Bernadette, Margaret, Amy and Chelsea at the giraffe enclosure.

ABILITY RUN IN THE PHOENIX PARK: Left – Judy Browne getting ready for the ability run.

Below – Wexford Branch members in the Phoenix Park.

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Spina Bifida Hydrocephalus Ireland - Providing orthopaedic footwear and associated orthotic appliances for over 20 years

ABOUT US he SBHI Orthopaedic Footwear Centre was established in the mid 1980s. Its initial purpose was to provide an efficient service to its members in acquiring suitable orthopaedic footwear and appliances. It subsequently expanded its services to include all aspects of orthopaedic footwear, including specialist shoes designed for diabetics.

T

SERVICES The main services provided at the Centre are: All aspects of orthopaedic footwear and orthotic devices An extensive range of fashionable, orthopaedic shoes for children Orthotic supports for sports injuries A full repair service.

The footwear can be made to measure, or quality off-the-shelf footwear can be tailored to meet specific requirements.

The centre offers a wide variety of styles to suit every occasion and for all ages. All work is carried out by fully qualified Orthopaedic Technicians.

COMFORT AND STYLE The SBHI Orthopaedic Footwear Centre supplies a range of footwear and appliances that have all the required orthopaedic features for a perfect fit; the footwear also retains a large element of style which is so important to all our clients.

SELF-CARE OF FEET 1) Check for any breakdowns (i.e. pressure sores, ulcers, blisters)

particularly under the toes and the base of the feet at least once or twice a week.

Hint: use a mirror if needed to inspect the feet. Possibly check your feet after showering.

What you should look for when inspecting your feet: Any redness and change of colour Swelling that is not usually present Any break in skin, especially on the soles of the feet Any accumulation of hard skin on the soles of the feet Any other problems which may occur 2) Be very careful of banging or knocking feet when transferring.

3) Make sure you have supportive fitting shoes in order to prevent friction sores or blistering.

4) After showering ensure that your feet are dried properly (particularly between your toes).

from a Doctor or Physiotherapist/ Occupational Therapist. Private clients do not need a referral.

CLINICS Regular clinics are held at the following locations: SBHI National Resource Centre, Clondalkin, Dublin 22 St. Michael's Houses throughout Dublin Cheeverstown House, Templeogue, Dublin 6w.

A fully-trained Orthotist is in attendance at all clinics to ensure accurate fittings and mouldings.

Private clinics can also be catered for.

To make an appointment get in touch with us via our contact details below.

ENTITLEMENTS People who are covered under the Medical Card/Long Term Illness Scheme may be entitled to services free of charge on condition that they meet the requirements of the HSE. The Centre offers advice on these entitlements, in a sympathetic, efficient and friendly manner.

First-time clients availing of our services under the Medical/Long Term Illness Card must have a referral letter from a Physiotherapist, Orthopaedic Surgeon or Occupational Therapist.

Repeat clients must have a referral

CONTACT US: ORTHOPAEDIC FOOTWEAR CENTRE on 01 457 2326.

CEO: George Kennedy, gkennedy@sbhi.ie, 087 915 7613.

Manager: Lorna Whelan, lwhelan@sbhi.ie, 086 851 7518.

Administrator: Karen Malone, kmalone@sbhi.ie, 01 457 2326