Spring 2013 - Spina Bifida Hydrocephalus Ireland

ability
Magazine of Spina Bifida Hydrocephalus Ireland
Spring 2013
Above:
Frank Larkin’s Strasbourg Report
See page 16.
Left:
Famine Way Walk Weekend
See page 4

Chairman’s Address & Contents
Chairman’s Address
What a year! 2012 has been a
difficult year and there are very few
of our members who have not been
hit by the recession. We are encountering
the effects on a daily basis.
As an organisation we have not
escaped these cutbacks but we are
looking ahead to 2013 in a positive
light. This is probably an opportune
time to welcome Peter Landy on
board as our new Fundraising Manager. Peter, who is well known
to all of our members, has been involved in the organisation for
many years both at local and national level. It’s a hard task trying
to generate funds but we would ask all the branches and members
to get behind Peter and support his efforts.
Since our last edition we have celebrated our very first World Spina
Bifida & Hydrocephalus Day. This was a great success with branches
taking to the streets to sell our Torc pin. We got a lot of media
coverage and we will hopefully build on this for next year’s equivalent
on 25th, October 2013. It’s not only a day for celebrating the
lives of our members but also lobbying and keeping the name of
SBHI in the minds of those who make the decisions.
You will read in this issue a report from Donegal member Frank
Larkin who attended the launch in Strasbourg of the I.F.’s position
paper on Ageing with Spina Bifida & Hydrocephalus, again a very
positive step forward.
In this issue:
l Chairman’s Address
l A Word from our CEO
l SBHI Welcomes New
Fundraising Officer
l Famine Way Walk Weekend
l Upcoming Youth and
Respite Events
l Annual Conference & AGM
l Updates
l National Sports Day Athlone
l Being Young and Irish Seminar
l Educational Officer Update
l Ciara – SimplyBe Makeover
l Something Amazing is
Happening to Me
l Health Check
l The Disability Access Route to
Education (DARE)
l Renal Diet
l SOSecure Swimming Briefs
l Strasbourg Report
l Saturday Fun Club
l Help & Support l Budget 2013
l World Spina Bifida
and Hydrocephalus Day
l Saturday Club Halloween
in Dublin
l We Need a Paediatric Consultant
Urologist Immediately!
l Around the Country
On behalf of the board I would like to thank the staff and our
volunteers around the country who keep the branches going for all
their work in 2012 and wish you all a healthy and happy 2013
– 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
A WORD FROM THE EDITOR:
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
2 www.sbhi.ie

A Word from CEO
A Word
from our CEO
Welcome to our first Ability issue
for 2013. I hope you find this
edition interesting and useful as
we have added some new items. In
particular we have received many
communications, of a personal
nature, where members are
looking for help and support. We
have printed some of these
communications in this issue and
we would like to hear from you
what your views are on these
points. A group of members and
some of our staff have been
meeting recently in a working
group so as to look at the idea of
SBHI members supporting each
other through a type of peer
support service. This will allow
members to support each other
and benefit from mutual experiences.
We will be meeting with
members throughout the country
in the near future to look at the
needs and opportunities for
members of Spina Bifida
Hydrocephalus Ireland to become
involved in peer support. When the
dates, times and locations have
been decided we will be in contact
with you. These are important
meetings and we hope you will
attend your local area meeting.
The lack of the paediatric
urological services in the country
is a major concern to many of our
members and families
throughout the country. We have
brought this to the attention of
the Minister for Health, the HSE
and to the Joint Oireachtas
Committee on Health and
Children. Discussions are ongoing
in all of these areas. On
January 28th the Health
Supplement of the Irish
Independent featured an article
by Eilish O’Regan titled: “Lack of
Urologist in Temple Street is risk
to young lives.” The article
relayed, verbatim, the presentation
made by Edel Browne,
Manager of our Family Support
Workers. It detailed the history of
our efforts to solve this situation
and the full text of the entire
presentation can be found on the
Joint Oireachtas Committee for
Health and Children’s website.
Also you can find details of this
meeting elsewhere in the
magazine. Now is the time for all
families affected by this situation
to contact your local politicians
and state your cases to them
forcibly. Also please keep your
local Family Support Worker
informed as SBHI will continue to
bring pressure to bear on the HSE
and the Health Department until
the situation is resolved to our
entire satisfaction. Furthermore,
please contact your local Family
Support Worker with your issues.
We have just published our
Calendar of Events for 2013.
Again in spite of cutbacks we
plan to run our usual events
throughout the year.
I am delighted to announce that,
because of an extension to the
HSE grant, our Family Support
Worker service in Cork and Kerry
will continue until at least
December 31st 2013. This is due
primarily to the excellent work
being done by Deirdre Gallagher.
I would encourage all people
affected by Spina Bifida and/or
Hydrocephalus is this region to
continue to work with Deirdre.
Finally I wish all our readers the
very best of health in 2013.
– George Kennedy,
CEO, Spina Bifida
Hydrocephalus Ireland
Your Youth & Respite Team:
Andrea Fox, National Youth Officer – 087-1363264, andreaf28@gmail.com.
Wala Brennan, Manager Youth & Respite Services – 085-7119087, wbrennan@sbhi.ie.
Helen Riney, Coordinator Youth & Respite Services at the National Resource Centre –
01-4572329, hriney@sbhi.ie. n
www.sbhi.ie 3

Fundraising
SBHI welcomes
new Fundraising
Officer
To support the vital work of Spina Bifida
Hydrocephalus Ireland, we invite you to follow the
footsteps that Irish Famine victims took over 160
years ago by retracing a journey through the
beautiful Doolough Valley, taking in the scenic lake
near Delphi Lodge and into the picturesque town of
Louisburgh. We are inviting participants to raise
€600 for this sponsored 10-mile walk and join us to
retrace the journey our ancestors
made in 1849.
Spina Bifida Hydrocephalus Ireland (SBHI) has
recently appointed Mr. Peter Landy (above) as
National Fundraising Manager covering the 26
counties of Ireland. Peter is a native of county Louth
where he lives with his wife and three children. The
youngest of Peter’s children, Hannah, has
Hydrocephalus. Hannah is ambulant but has many
issues associated with Hydrocephalus. Peter is a longtime
member of SBHI and actively participates in his
local Louth-Meath branch and also at national level.
As a parent, Peter comes with an in-depth knowledge of
the issues affecting people with Spina Bifida and/or
Hydrocephalus and their families, and so is ideally
positioned to help our organisation to raise much
needed funds for the continuation and expansion of our
services. As the demand for SBHI services increase so too
does the demand for monies to meet these increases.
Peter is currently endeavouring to build relationships
with community and voluntary groups, business groups,
sports clubs, etc. with a view to creating networks
through which our organisation can become better
known across the country.
If you, or someone you know, would like to help Peter in
relation to fundraising or would just like more information
about fundraising in general you can contact
Peter Landy on 087-7376351 or at the National Resource
Centre on 01-4572329 or alternatively by email:
plandy@sbhi.ie. He will be delighted to hear from you. We
are always on the look out for new, unique or even quirky
fundraising ideas so if you think of one please let us
know. Peter’s role is to help you bring your idea to fruition
and support your effort with back-up and any support
services you may require. To coin a phrase made famous
by a very large multiple store:
“EVERY LITTLE HELPS.” n
Buses will leave from Dublin to Westport on Friday 22nd at 2pm
and return on Sunday 24th March 2013. For those interested in
securing a place on the bus please call 01 457 2329 to pay your
deposit and book your seat.
Sponsorship will include two nights bed & breakfast and dinner
on Saturday night in the four star Castlecourt Hotel
(www.castlecourthotel.ie).
The hotel is fully equipped for wheelchair users interested in
taking part. Transport to and from the walk will also be provided
with transport following for those less able or requiring a rest.
There will be refreshments during and at the end of this 10 mile
scenic, non-challenging walk from Doolough to Louisburgh.
For the more energetic there will be transport to and from Croagh
Patrick with a walking climb to the summit.
For more information: Spina Bifida Hydrocephalus Ireland,
Old Nangor Road, Clondalkin, Dublin 22. Tel: 01 457 2329.
Email: info@sbhi.ie www.sbhi.ie
4 www.sbhi.ie

Youth & Respite
Upcoming Youth and Respite Events
Book your place today for any of the events below by contacting:
Louise or Helen at the NRC, Clondalkin: Text 085-7119087. Phone 01-4572329. Email: lhealy@sbhi.ie or hriney@sbhi.ie
Essential Cooking – Wednesdays,
starting 6th Feb.
NRC, Old Nangor Road, Clondalkin,
Dublin 22.
For adults. 7pm to 9.30pm approx. Course
complimentary. Participants pay only for
ingredients. Transport available. Six
consecutive Wednesdays.
RSVP to the above.
__________________________________
Valentine’s Night with DJ Ian Browne –
Friday 15th Feb.
Clarion Hotel, Liffey Valley, Dublin 22.
Strictly over 18s. 8pm ‘til late. Entry €10.
Finger Food included. Pay on the night.
RSVP asap to above.
Please contact your local branch if you
require transport – they may/may not be
able to provide a service.
Reduced room rate €60 B&B for attendees.
Book directly with hotel on 01-6258000.
Exciting raffle prizes including a weekend
break for two in the Clarion Hotel, Cork
and dinner for two in the Clarion Hotel,
Liffey Valley, Dublin.
__________________________________
NEW ‘PILOT’ Children’s Respite:
Friday 22nd February-Sunday 24th
February.
MDI ‘Home from Home’ Self Catering
Apartment, 75 Lucan Road, Chapelizod,
Dublin 20.
Children aged 9-12 with high needs.
Names being received directly from the
Family Support.
__________________________________
Adult Getaway: Monday 11th –
Thursday 14th March
Kilcuan Centre, Clarinbridge, Co. Galway.
Transport available from NRC,
Clondalkin.
First come first served.
Kidz Korner – Saturday 30th March
(during Easter Break).
Clarion Hotel, Liffey Valley, Dublin 22.
Kiddies Fun Day. Easter Egg Hunt and
other egg-citing activities!
For children nine years and under.
Siblings of other ages also welcome.
12pm to 4pm. Entry €15 per family
(2 adults, 2 children).
Additional children €5 each.
Pay on the day.
RSVP by 22nd March.
__________________________________
Teenage Mid-Term Break:
Tuesday 2nd–Friday 5th April
Kerdiffstown House, Johnstown, Co.
Kildare.
RSVP no later than 1st March. First come
first served.
__________________________________
Annual Conference & AGM
The Clarion Hotel, Sligo, October 4/5/6th
This is your chance to nominate topics for this year’s conference. If there is some issue you would
like to see covered please contact a member of staff at our National Resource Centre
or the Family Support Worker in your area. n
www.sbhi.ie 5

Updates
UPDATES…
Neural Tube Defect (NTD) Survey:
Since May 2012, SBHI has been assisting
the HSE to carry out a survey of all
pregnancies and births, where there
was a diagnosis of an NTD (Spina Bifida,
Encepolocele, Anencephaly). The survey
is looking at diagnosis from 2009 to
present. All maternity hospitals in
Ireland were involved with this survey
and SBHI received a large response
from its online campaign seeking
parents to fill in the questionnaire.
The HSE is currently accumulating the
results of this survey at present and we
will have a true representation of the
number of NTDs diagnosed in Ireland
moving forward. Edel Browne–Curran is
liaising with the HSE officials responsible
for this on an on-going basis. The most
startling finding so far is that the level of
Anencephaly appears to be on a par with
myelomeningocele, which is the most
common form of spina bifida births in
Ireland. We are hoping to have a preliminary
report from the HSE in early 2013
with the statistics of 2009 and 2010.
If you have any queries in relation to this
survey, please contact Edel on 086-852
0616, 01-4572329 or ebrowne@sbhi.ie.
–––––––––––––––––––––––––––––––––––
Frances Halligan – Continence
Advisory Service:
Frances continues to carry out a telephone
advisory service to our members and
there is on-going interest in this service.
She is a retired nurse specialist who
worked in Our Lady Children’s Hospital,
Crumlin, with our members for upwards of
20 years and she volunteers her time to
SBHI to advise our members on continence
related queries.
Over the past year Frances also gave information
talks to members, families and
professionals around the country and this
proves to be extremely beneficial to
people. In excess of 600 members received
support through Frances’ continence
advisory service, either through telephone
or face-to-face consultations in 2012. All
referrals to this service come through the
Family Support Workers (see list of FSWs
on page 26).
–––––––––––––––––––––––––––––––––––
Ref Group for Establishing
Paediatric and Neo-Natal Clinical
Care Programmes:
The HSE in association with the Royal
College of Surgeons and Royal College of
Physicians, among others, are developing
clinical care programmes to improve and
standardise patient care throughout the
HSE. The programmes have three main
objectives:
1. To improve the quality of care they
deliver to all users of HSE services.
2. To improve access to all services.
3. To improve cost effectiveness.
Two of the care programmes will address
Paediatric and Neo-Natal services both
within acute and community sectors. Prof
Alf Nicholson and Dr John Murphy are
leading these programmes respectively.
Central to the success of this work is the
involvement of service users in the design,
delivery and evaluation of this work.
SBHI (represented by Edel Browne–
Curran), along with 10 other invited organ-
isations are involved in this process. The
lead consultants have at this stage met
with staff in all maternity and paediatric
units nationwide and informed the
hospitals of the development of the
programme in the near future. It is
necessary that SBHI is represented at this
level when these Care Programmes are
being put together in order to ensure that
our members receive the best quality of
care, regardless of what part of the
country they are living in and that there
are clear guidelines in place that will be
followed in all clinical settings. Updates to
follow.
–––––––––––––––––––––––––––––––––––
Domiciliary Care Allowance
Review:
A detailed submission was sent on to the
Dept. of Social Protection on behalf of
SBHI’s members in September 2012. The
purpose of this review was to analyse:
1. The objectives and purpose of DCA.
2. The application and assessment
process.
3. How decisions are reached and
communicated to parents.
4. How individual cases are reviewed.
5. Should the rate of DCA reflect the level
of disability / care needs of the child.
6. How the appeals process operates.
A lengthy document was compiled
specific to the needs of the families we
work with. Copies of this can be requested
through Edel Browne–Curran if desired.
SBHI is willing to meet with the Review
Group to assist the process and improve
the current system in conjunction with the
Department of Social Protection. n
National Sports Day Athlone
Hi all.
We attended the national sports day in Athlone last
summer. I must say it was a thoroughly enjoyable day,
well organised, with plenty of activities both indoor
and outdoor. Amazingly the weather held up and it
stayed nice and dry.
My kids, Nathan and Rebecca, took part in the morning
activities indoors but Alicia was still a bit small. In the
afternoon Nathan took part in the track and field and
the javelin throw in which he won 2 silver medals, he
was pure thrilled!! It was great seeing people of
different ages with different abilities all taking part.
Thanking you,
The Riordans!!! n
6 www.sbhi.ie

Member’s Story
Being Young and Irish Seminar
by Sean O’Kelly
On the 8th September, Megan and I
went to a “Being Young and Irish”
regional workshop in DIT in Bolton
Street. We were nominated by the
youth service of the Irish Wheelchair
Association. President Higgins set up
this initiative so that young people
(from the ages of 17-26) can have a say
in changing society in Ireland during
his presidency. There were four
regional workshops, Dublin, Cork,
Monaghan and Galway. At the end of
the regional workshops there was a
national seminar in Áras an
Uachtaráin.
I was surprised and delighted to
receive an email from the people
who helped organise the
regional workshops to say that I
had been selected to go to the
national seminar in Áras an
Uachtaráin on the 17th
November. I was lucky to be one
of a hundred people chosen. I
couldn’t have said no to a oncein-a-lifetime
opportunity, so I
emailed back within a few days of
receiving the email to say that I
would love to go.
In the days and weeks preceeding
the national seminar, I got emails
from the people who selected me
to go, emailing me with various
documents including the timetable of
the day, the various workshops that were
set, a draft declaration of our views on
changing society in Ireland, etc., so that
we would know what we would be
working with and also what our
timetable would be. I had to be there at
10.00am until 7.00pm. I thought that
would be a long day but a good one.
17th November arrived. I was really
excited. I didn’t know what to expect
other than the documents we were
given. I arrived at the Áras just after
10.00am. At the gate there were guards
checking people in. As we drove in the
gates I looked around the grounds in
amazement. When we parked, I went up
the ramp into the main reception room.
There were a few people signing people
in. I was given a “taking charge of
change” t-shirt and a badge that I could
put around my neck.
I was then directed outside and brought
into a big room where the seminar was
held. The room was full with lots of
people at large round tables. Each table
was numbered. Each number represented
a workshop. When I was given
the “Being Young and Irish” badge, on it
were two stickers each with a number on
it. The numbers that I got were nine and
six. The first number was the workshop
that had to be attended in the morning
and the other in the afternoon. The
workshops that I had to go to were
“Identity as Irish” and the other was
“Stay Positive”.
Sean listens
carefully to
President Higgins
at the national
seminar in Áras an
Uachtaráin
Before the workshops started, President
Higgins came and made a speech. There
were also speeches from a woman who
works for the President and also two
people from a team in D.I.T. came and
told us how they collated all the research,
from both online submissions and also
the regional workshops. That went on for
about half an hour.
The morning session started. Each table
was given a proposed declaration for the
“Being Young and Irish” seminar. The
proposed declaration was made up of
ideas from people doing the regional
workshops. We had to read it and then
change words or sentences if we didn’t
think they fitted in with the declaration.
Once we decided on many changes we
had to choose our top three. We each
were given a remote control. This was
used for voting. After each table read out
their individual ideas, the rest of us had
to vote whether it was right to put those
ideas in the declaration or not by
pressing ‘one’ for yes and ‘two’ for no.
We had lunch after that from 1:15 until
1:45 in the same room we had the
morning session. After lunch we went
into our afternoon sessions. I was not
able to get to the table that I was
assigned to in the afternoon because it
was too tight to get to and it was in the
back of the room so I was told to stay at
the group that I was at in the morning
session. When we all got to our tables
there was a presentation of the draft of
the amended declaration.
We then had to individually
think of ways that we could
achieve our vision. It was the
same process as in the morning
session where we had to write
down our top three ideas of the
decisions we thought of and
then we voted on each idea.
That went on for a while.
At 3:30 we had to go outside
while the organisers had to get
the room ready for the official
presentation of the ‘Taking
Charge of Change’ declaration
being delivered to President
Higgins and Government
representatives. We were
called back in after about half
an hour. The room was transformed
completely with loads
of chairs out and cameras from RTE and
other media bodies there. It was very
exciting. Once we all had settled in, the
presentations started.
A small group of young people did
presentations and also presented the
final draft of the declaration to President
Higgins and Government representatives.
After the declaration was delivered,
President Higgins and Minister Frances
Fitzgerald each made a speech on what
they thought of the declaration.
When all the presentations were finished,
there was a reception in the house itself,
where there were nibbles and drinks. The
whole lot of us were able to chat with
each other. President Higgins made his
last speech of the night thanking
everyone for their input into the whole
initiative. After his speech, Ryan Sheridan
played a couple of songs.
I really enjoyed the day. I found it really
interesting and loved meeting up with
the people who were at the Dublin
workshop. n
www.sbhi.ie 7

Educational Officer
Educational Officer Update
In my role as Educational Officer I
have been visiting a number of
schools, education centres, universities
and colleges throughout the
country. The school visits have taken
place quite literally from Malin Head
to Mizen Head, east to west.
I have absolutely loved meeting and
talking with parents about how their
children with Spina Bifida and/or
Hydrocephalus are getting on in school
and what kind of information would
help the school when I visit. I would like
to thank all of the parents to date for
being so open to discussing their
child’s needs. Visiting the schools has
been equally interesting! Many of the
schools I have visited really have the
best interest of each child at heart. With
a bit more understanding about the
conditions, Spina Bifida and
Hydrocephalus, they now have a much
better insight into the specific needs of
each child in their class and will
hopefully take all of the information on
board. If any parent or school is interested
in contacting me I will be
continuing to arrange school visits for
2013 (please see contact details below).
Another focus for February, March and
April is to undertake educational
sessions with teachers in collaboration
with the Education Centres throughout
the country e.g. Tuam, Mayo, Athlone
etc. These educational sessions will
discuss:
l
l
l
SBHI – the organisation (origins,
mission, structure),
About the conditions – Spina Bifida
and Hydrocephalus,
Teaching and learning implications,
l Group discussions.
I will also be visiting colleges with
teacher-training courses, nursing
courses, special needs, childcare, etc.
A first aid course for parents is
something I am working on at present.
This can be combined with manual
handling/people-lifting skills or it can
be arranged as a standalone course. We
are receiving feedback on a regular
basis about people who have injured
themselves from lifting or moving. The
manual handling/people-lifting skills
are absolutely vital to protect your
back. Don’t forget that just because you
have been lifting a certain way for years
doesn’t mean that you cannot learn
how to do it correctly and in such a way
that you protect your back. It is never
too late! These courses will only run if
there are enough people interested so
please contact me if this is something
you feel you would like to take part in.
It will be a 1-day course. The venue and
date of this course will depend on
where the majority of interested participants
are from e.g. Cork, Donegal,
Wexford, Athlone, etc.
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There will be other initiatives coming up
such as kidney management sessions
for members, skincare maintenance,
healthy eating and healthy living, etc.
and we will be informing all of the
members about these sessions as they
arise.
Thank you all and don’t forget to start
your training for this year’s Ability Run.
It is going to be bigger and better than
last year’s Wheelie Big Day and with
even cheaper entry fees too!
– Katie Kelly, 01-4572329
or e-mail: kkelly@sbhi.ie
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.1%&.

My Story
Ciara – SimplyBe Makeover
Ciara gets
made up
for TV3’s
Exposé
photo
shoot.
Last summer I entered a competition
with SimplyBe.ie to be a model for their
fashion catalogue. I entered the competition
as I had bought their clothes
before and could genuinely say that
they worked for me. I also felt that as a
young woman with a disability, I could
prove that all women can look and feel
good given the right outfits and a bit of
confidence. So I sent off the application
and thought no more about it until a
week later….
I was in work when I got a phone call from
Simply Be saying that I had been picked
out of 5,000 applicants to go into the last
100. I was so excited! I had to go to an
interview with people from the SimplyBe
team and it was there that I was told that
while they were not going to put me
forward for the final, that they had other
plans. On reading my application they had
realised that there were a lot of women
with different disabilities who wanted to
wear fashionable clothes and feel good
and they liked the fact that I had already
said that their clothes had helped me to
achieve that. They wanted to highlight this
issue and as a result in December I took
part in an interview and fashion shoot for
TV3’s Xposé with the help of the girls from
SimplyBe.
On the day, myself and my friend set off at
about 5.30am for an early morning shoot at
the Gibson Hotel. I had already spoken to
the team about my own issues around
clothes so they knew what I was
comfortable wearing . However they
wanted me to wear clothes that would be
different to my usual styles so that I could
try new things and feel comfortable doing
it. I felt nervous but decided it was a once in
a lifetime opportunity so I was delighted to
do it. The big issues for me are my feet and
my legs. I wanted to know if I could wear
things other than jeans or black trousers
and not feel self conscious. Also, my weight
has been an issue for me so knowing that
the company do a large range of sizes
meant that I could try different colours and
styles and still feel comfortable.
The day itself went in a blur, hair, make-up
and two gorgeous outfits later and I could
not believe the difference a few simple
changes could make. One of my outfits
was a teal-blue dress that I would have
never picked for myself but which I
absolutely love now! The main things I
learned were that everyone is different
and people need to find a style that works
for them. Skirts will work on some, skinny
jeans will be lovely on others. Also if you
need to wear special shoes for example
then keep wearing them but try to find
another way to express style such as tops
or accessories. For me the main things
were to start wearing more colours
instead of black and also it’s amazing how
much a belt or jewellery can make an
outfit.
The day has completely changed the way I
look at clothes and will try many more
things now than I used to. Even if things
don’t work it’s about finding something
that will work and it can be a lot of fun. I
thoroughly enjoyed my day. n
April 20, 2010 SPORTS The Examiner I 51
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www.sbhi.ie 9

Stories of Hope
Something Amazing is
Happening to Me
My name is Maeve and I am 42 years
old and have Spina Bifida. I want to
tell you about something amazing
that happened to me.
In April 1970, my parents were
delighted with their new arrival – their
first girl. But their joy and excitement
came to an end when they were told
that their little girl had Spina Bifida.
Shock, hurt and, of course, feelings of
“why us” floated around in their heads.
Both of my parents are very positive
and even during this awful time they
looked and held each other, gathering
their inner strength and they decided
they would try to deal with it as best
they could.
And so they have. Our mother said if
our daughter lives until she is ten,
twenty or even older, they would make
sure that I grew up independently and
help me to live a normal life as much as
possible. So from those positive
thoughts my life’s journey began.
Growing up with Spina Bifida has not
been easy. I’ve had four major operations
and countless visits to different
hospitals, visits that became a way of
life for me. Poor feeling in my legs has
always been a problem. A simple knock
or bump can give rise to cuts and sores
and the simple feeling of being cold all
the time causes its own problems. I can
remember sitting on a radiator and
because I couldn’t feel the heat, I got
serious burns without feeling any sense
of pain. My legs, although functional,
have always been on the wobbly side.
Standing still has never been easy.
School. What can I say about it I
managed to get through despite
having been absent a lot and I
succeeded in getting my Leaving
Certificate. Not being able to join my
siblings and classmates in physical
activities was difficult and when I tried
to join, I invariably fell over and became
the subject of name-calling and ridicule
by some. I know I am one of the lucky
ones with Spina Bifida. I am able to
walk, have a job and lead a fairly normal
life. I succeeded in passing my driving
test the first time, and I drive to work
most days.
Anthony and I have been married for
thirteen years but not being able to
have a baby has upset me greatly. After
I had been feeling sorry for myself for a
few months, a friend suggested that I
should try complementary medicine, so
after a bit of research I began to do so.
After a year or so of going to Mella
Ryan Ring at An Duiche Holistic Health
Centre in Tipperary for different treatments
ranging from reflexology to Reiki
and massage, I did not get pregnant
but something very strange happened
to me. A sense of feeling started to
come into my legs. It was a very strange
feeling and in some ways a very scary
one. Over the next few months I
noticed that I could stand up straight
without wobbling. The circulation in my
legs has also improved.
For the first time in my life, I started to
feel confident and good about myself.
Maybe the best part is that I no longer
need a caliper. I was being fitted for one
in Cashel and on the fourth fitting the
man seemed exasperated and said to
me, “Maeve, I’ve been making these for
years and there is something very
wrong here.” He threw the caliper aside
and said to me, “You don’t need one.”
That has given me the ability to face
the future with a sense of excitement.
One thing that my treatments have
taught me is the need to keep positive.
I know that I don’t walk straight but I
have started to improve. Who knows
Only God knows what will happen
next!
After my story was published in a book
called “Stories of Hope” by Valerie
Bowe last year, I am still gaining more
and more confidence as I go through
life. I have started a course in Adlerian
Counselling which, at the end of the
course, I hope to have achieved a
Diploma in Counselling and then I
would like to help other people like me
who are suffering with Spina Bifida to
give them the confidence to face the
unknown future ahead. n
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10 www.sbhi.ie

Health
By
Edel
Teresa
King
Health Check
So it’s that time of year again. For me
at least. My appointment has been
made for my yearly check-up.
I don’t think that I would be wrong in
saying that everybody reading this
article is more familiar than the average
person with the hospital environment.
We all have our stories to tell. Our
unique experiences, the ups and downs.
So when the call came through it put
me off kilter for the rest of the day.
For anyone with a disability their
relationship with the medical world is a
weird one. As a child, my able-bodied
friends found it entertaining when I told
them that I had had more than 13
operations. They didn’t mean any harm
by it. It was just a foreign world to them,
some of them having never been in a
hospital since they left it as a baby. For
me, for a while, it was a badge of honour.
I felt different, special, like I knew more
than them and I had been let in on a big
secret.
But over time, it became something I
longed to have no more to do with.
During my tween years, having to be
pulled from school to go to hospital or
having to take more care of myself in
areas others didn’t, was a nuisance. I
wanted to be just like everybody else. It
took me a long time to see that in order
to be able to live the life I wanted – to
Edel Teresa King
be “normal” – that this sometimes had
to come first.
I know that I’m lucky in that my
absolute worst period healthwise
happened before I was two. I have no
memory of it and for that I am thankful
because the bits that came later that I
do remember, were bad enough. My
parents went through it all for me really.
They aren’t ones to dwell but through
the years I’ve heard the stories and I
don’t know if I would ever have had
their strength.
My parents’ relationship to my health is
also vastly different to the experiences
of my able-bodied peers. They have
always played quite an active role in my
hospital visits. My mother will still go
into the room with me when I go see my
hospital doctor. I know that at 28 I am
getting a bit old to have my mammy
there with me but I also know that I am
more comfortable when she is there.
She has been through it all with me. She
remembers dates and procedures that I
don’t, she understands the lingo and
she knows how I will react to various
things.
I am big girl enough to attend the GP on
my own. But anything more serious,
anything that could have long term
effects, I feel reassured knowing that she
is there.
As a result of our past experiences I
probably share more than most about the
workings of my body with my mother. I
have spoken with friends about this before
and I know that I am open with her in
areas that they are too embarrassed to
broach with their mothers. But she has
seen it all. Seen me at my worst. She knows
me and my body. I like having that
sounding board if I am worried about
something.
My friends will try and be comforting at
this time. They will listen to me rant about
how it’s come around so fast, how I have to
get up early, how I might have this, I might
have that, I might have to go back in, what
will he say about this, that or the other.
And they will turn to me and reassure that
sure, I’ve been feeling fine, no infections,
nothing beyond a cold for the last year so
everything will be fine. Because they don’t
fully understand. Unless you’ve been
through it, nobody can fully understand.
I’m not overly worried. I have (touch wood)
as mentioned, experienced very good
health in the last year. But the memories
live on and that can be enough.
I am prone to bladder stones. Nearly every
year there’s one lurking in the x-ray and
every year I have to get it blasted. I moan
about this to friends and family and I know
they mean well but I get mad when I hear
them say things like “well, it could be a lot
worse” or “it’s just a day, you’ll be home
before you know it”. I KNOW it could be a
lot worse. I saw people through the years
going through worse.
But knowing that somebody else is having
a tougher time than me, knowing that in
the grand scheme of things my worries are
small, doesn’t make it any easier to go
through.
I may still have to go into hospital and get
the procedure done. Go through the
ordeal of finding a vein for the anaesthetic
(I have the worst veins in the entire world),
feel groggy and out of it for a day or two
afterwards. Look out for any signs of
infection in the week post op. It’s still a
day doing something and being
somewhere I would rather not.
I hope this piece doesn’t come across as
whiny or moany. That is not my intention.
I don’t want to be seen as that person. I
know my family and friends love and
support me and are just trying to make me
feel better. But sometimes the best thing is
to just leave me be. Let me get through it
in my own way.
By the time you are reading this my
appointment will have come and gone
and I’ll be putting it behind me until next
year when it all starts again. n
www.sbhi.ie 11

Education
The Disability Access
Route to Education (DARE)
Although this year’s application date has
passed, readers may be interested in
learning about DARE with a view to
applying in a future year.
What is the Disability Access
Route to Education
The Disability Access Route to Education
(DARE) is a college and university admissions
scheme which offers places on a
reduced points basis to school leavers
under 23 years old with disabilities. DARE
has been set up by a number of colleges
and universities as evidence shows that
disability can have a negative effect on
how well a student does at school and
whether they go on to college.
Who is it for
DARE is for school leavers who have the
ability to benefit from and succeed in
higher education but who may not be
able to meet the points for the preferred
course due to the impact of their disability.
Students who are eligible for the Disability
Access Route to Education (DARE) may
secure a place on a reduced points basis.
All students with a disability, irrespective
of whether they come through DARE or
not, are offered a variety of academic,
personal and social supports while
studying at third level. Individual institutions
will determine the nature and
delivery of such supports in accordance
with their own policies and practices and
subject to the availability of resources.
The following are examples of the types of
supports available:
l
l
l
l
An orientation programme to
introduce students to
university/college.
Study skills, extra tuition if required
and exam support.
Access to assistive technology and
training.
One-to-one meetings with support
staff, social gatherings and mentoring.
What places are available
Each college or university taking part in
the DARE scheme has allocated a limited
number of places on a reduced points
basis for students entering through DARE.
This number or quota is different for each
college and university. You can also get
details of the quotas on the website of
each college and university that takes part
in the DARE scheme.
If you are applying for the DARE scheme,
you must:
l give evidence confirming that your
disability has had a significant impact
on your educational performance,
l meet the minimum entry (matriculation)
and subject requirements of the
colleges or universities to which you
are applying,
l compete for one of the quota places
based on your Leaving Certificate
results.
You can find out more about the selection
and admission policies on the websites of
the participating colleges.
Participating Higher Education
Institutions:
l
l
l
l
l
l
l
l
l
l
l
l
l
Athlone Institute of Technology
Cork Institute of Technology
Dublin City University
Dublin Institute of Technology
Mater Dei Institute of Education
National College of Ireland
Pontifical University, Maynooth
NUI Galway
NUI Maynooth
Trinity College Dublin
University College Cork
University College Dublin
University of Limerick
How do I apply to DARE
l Step 1
Apply to the CAO at www.cao.ie by
appropriate date (in 2013 it was 1st
February).
l Step 2
You must disclose (in 2013 it is by 1st
March) your disability and/or specific
learning difficulty in your CAO application
and fully and correctly complete
Section A of the Supplementary
Information Form (the SIF is a part of
your CAO application). If you wish to be
considered for the DARE scheme, you
must indicate this on Section A of the
fully completed SIF by ticking “Yes” to
Question 5 (in 2013 it is by 1st March).
l Step 3
You must return the fully completed
Second Level Academic Reference
(Section B) and Evidence of Disability
(Section C) to the CAO (in 2013 it is by
1st April).
www.accesscollege.ie has a lot more
information on the DARE scheme and
filling out the application forms. More
detail is provided below on the information
required for the Evidence of
Disability and who to contact in participating
institutions.
If you are over 23 years old, you can apply
though the mature student pathways.
http://www.citizensinformation.ie/en/educa
tion/third_level_education/applying_to_col
lege/third_level_courses_for_mature_stude
nts.html
There are some financial assistance and free
fee options available for students. Please
have a look at www.citizensinformation.ie
for more information.
Evidence of Disability
You must return the Evidence of Disability
Form (Section C) completed by the
accepted Medical Consultant/ Specialist.
This form provides verification of your
disability and helps to determine appropriate
supports at third level. All applicants
must complete this form with the exception
of the following:
l
l
Applicants who have an existing report
completed within the appropriate
timeframe by the accepted Medical
Consultant/Specialist. The report must
contain the same detail as the Evidence
of Disability Form.
Applicants with specific learning difficulties
(Dyslexia or Dyscalculia), who
12 www.sbhi.ie

Education
Type of Disability Accepted Medical Consultant/Specialist Age of Report
Asperger’s Syndrome
Attention Deficit Disorder/Attention
Deficit Hyperactivity Disorder
Appropriately qualified Psychiatrist OR Psychologist
OR Neurologist OR Paediatrician who is a member
of his or her professional or regulatory body
Appropriately qualified Psychiatrist OR Psychologist
OR Neurologist OR Paediatrician who is a member
of his or her professional or regulatory body
No age limit
Must be less than three years old
Blind/Vision Impaired Ophthalmologist OR Ophthalmic Surgeon No age limit
Deaf/Hard of Hearing
Students may apply under ONE of the
following categories:
(A) Applicants who have an Audiogram
(B) Applicants who attend a School for
the Deaf
(C) Applicants with a Cochlear Implant
DCD - Dyspraxia/Dysgraphia
(A) Applicants who have an audiogram:
Professionally Qualified Audiologist
(B) Applicants who attend a School for the Deaf:
Principal of School for the Deaf
(C) Applicants with a Cochlear Implant: Ear, Nose &
Throat (ENT) Consultant OR Cochlear Implant
Programme Coordinator
Applicants with DCD - Dyspraxia/Dysgraphia must
provide a full psycho-educational assessment
completed by an appropriately qualified psychologist
AND a report from an Occupational Therapist
OR Neurologist who is a member of their respective
professional or regulatory body.
No age limit
Report from Psychologist must
be less than three years old
There is no age limit on the
report from the Occupational
Therapist/Neurologist
Mental Health Condition Psychiatrist Must be less than three years old
Neurological Conditions (incl.
Epilepsy, Brain Injury, Speech &
Language Disabilities)
Physical Disability
Significant Ongoing Illness
Specific Learning Difficulty (incl.
Dyslexia and Dyscalculia)
Neurological Conditions: Neurologist OR other
relevant Consultant.
Speech & Language Disabilities: Speech and
Language Therapist
Orthopaedic Consultant OR other relevant
Consultant appropriate to the disability/condition.
Diabetes Type 1: Endocrinologist or Paediatrician
Cystic Fibrosis (CF): Consultant Respiratory
Physician or Paediatrician
Gastroenterology Conditions: Gastroenterologist
Others: Relevant Consultant in area of condition or
Consultant Registrar/Registrar
Appropriately qualified Psychologist.
No age limit
No age limit
Must be less than three years old
Must be less than three years old
l
must provide a full psycho-educational
assessment completed by an appropriately
qualified psychologist. The report
must be less than 3 years old.
Applicants with DCD - Dyspraxia/
Dysgraphia must provide a full psychoeducational
assessment completed by
an appropriately qualified psychologist
and verification from an Occupational
Therapist or Neurologist. The report
must be less than 3 years old.
How do I contact DARE
To speak to a DARE expert in the
Disability/Access Office of each of the
participating institutions please use the
following contact details:
Athlone Institute of Technology
Patricia Kearney dare@ait.ie
090 646 8141.
Cork Institute of Technology
Laura O’Rourke dare@cit.ie 021 433 5107.
Dublin City University
Disability & Learning Support Service
dare@dcu.ie 01 700 5927.
Dublin Institute of Technology
Bob O'Mhurchu dare@dit.ie 01 402 7656.
Mater Dei Institute of Education
Carmel Carroll dare@materdei.dcu.ie
01 808 6584.
National College of Ireland
Karen Mooney dare@ncirl.ie 01 659 9269.
NUI Galway
Catherine Dufficy dare@nuigalway.ie
091 492 875.
NUI Maynooth
Catherine Doherty dare@nuim.ie
01 708 6025.
Pontifical University Maynooth
Sandra Norgrove dare@may.ie
01 708 4772.
Trinity College Dublin
Alison Doyle dare@tcd.ie 01 896 3111.
University College Cork
Mary O’Grady dare@ucc.ie
021 490 2985.
University College Dublin
Fiona Sweeney dare@ucd.ie 01 716 1658.
University of Limerick
Brenda Shinners Kennedy
dare@ul.ie 061 202 346. n
www.sbhi.ie 13

You Are What You Eat
Renal Diet by Taylor Farrell
The renal diet is an essential part of
treatment of an individual with Spina
Bifida. It helps you feel well in yourself
and avoids complications like fluid
overload, bone disease and high blood
potassium. The kidneys can help
maintain normal blood count and are
also important in regulating normal
bodily functions.
Nearly all people with Spina Bifida will
have a degree of kidney disfunction. Some
symptoms of kidney malfunction are
tiredness, chest pains, headaches, nausea
and poor appetite.
Having a healthy appetite is essential in a
renal diet and you must also be aware of
intakes of certain foods. If your blood
potassium level is allowed to rise too high,
it can affect the heart and in extreme cases
cause it to stop.
Vegetables can be used to make meals
more appetising and interesting. If you
have been advised to restrict your
potassium intake, you will need to include
vegetables in your daily allowance. Salads
along with fruit must be included as part of
your renal diet. Potatoes are very high in
potassium and must be double boiled in
large amounts of water. Try to make use of
alternatives like rice or pasta.
Protein is essential for tissue repair and
growth, therefore a substantial amount of
protein is needed to prevent muscle loss
and malnutrition. Protein is found in meat,
chicken, fish and eggs. Some protein
sources need to be limited as they contain
potassium for example milk, cheese and
yoghurt.
In Spina Bifida, kidney issues often develop
at an early stage in life, and if not managed
appropriately, damage can start at a young
age. Conserving kidney function is
important, so you must regularly attend
your clinic and monitor kidney function at
least once every 12 months.
Patients with kidney disease undergo a lot
of X-rays. The contrast used in CT scans is
potentially toxic to your kidneys, be aware
of this and do not be afraid to discuss it
with your doctor.
THE TWO MAIN DIETARY ISSUES
REGARDING HEALTH OF YOUR KIDNEYS
ARE:
l Weight management
l Salt intake
Weight Management
Obesity is a risk factor of CKD (chronic
kidney disease).
These can be useful tips in maintaining
your renal diet:
1. Follow a regular meal plan.
2. Watch portion sizes.
3. Do not choose sugary foods or drinks.
4. Choose healthy carbohydrates. These
include wholegrain bread and wholegrain
pasta.
5. Choose lean meat, removing any
visible fat and skin.
6. Remember all alcohol is high in
calories.
7. Get active. Discuss an exercise plan
with your doctor.
8. Use low calorie cooking methods.
9. Add plenty of variety to your meals.
Salt Intake
We need only 1.4g of salt per day for:
l Keeping body fluids balanced.
l Transmitting information to nerves
and the muscles.
We actually take in about 9g of salt per
day. 80% of salt intake is hidden in
processed foods. You can try and decrease
the amount of salt you take in by not
adding salt when you cook. Why not try
some suitable alternatives like, black and
white pepper, dried or fresh herbs, lemon
juice or vinegar.
LABELS
It is important to be aware when
reading food labels
A lot
A little
20g of fat
3g of fat
5g of saturated fat 1.5g of saturated fat
15g of sugars 5g of sugars
This is per 100g of food.
ALCOHOL
Alcohol is allowed in moderation except if
you are a risk of high blood pressure.
1-2 units per day for women
(max 14 per week).
2-3 units per day for men
(max 21 per week).
1 unit = < ½ glass of wine
< ½ pint of beer or lager
One average bottle of wine =
9 units of alcohol.
Many thanks to Taylor Farrell for putting this
article together. n
14 www.sbhi.ie

Useful Information
SOSecure Swimming Briefs
Finally... An effective
and discreet swimming
undergarment for
adults and teens.
Introducing the SOSecure Containment
Swim Brief by Discovery Trekking Outfitters.
This unisex undergarment provides
superior protection and is very discreet.
Incontinence is a common condition –
don’t let it keep you out of the pool. Enjoy
life to the fullest!
Discovery Trekking Outfitters is committed
to making a difference in the lives of those
who require special products. Their
SOSecure Containment Swim Brief (also
known as a swim diaper or swim nappy) is
an innovative design with a focus on
practicality, durability and comfort.
Considered the best design available, the
brief is used by occupational therapists,
physiotherapists and caregivers all over
the world. If you have any special requirements
for sizing, please contact the
company. Their helpful staff are happy to
assist you with any questions.
Available on: www.sosecureproducts.com.
Tel U.K.: 1-250-286-6577 or 1-877-551-6577.
Adult Swimwear is also available on
www.choiceshops.co.uk. n
One of SBHI’s Teen Break Weeks in 2012
www.sbhi.ie 15

International
Strasbourg Report
by Frank Larkin
Frank Larkin
The event to launch the IF paper on
Ageing with Spina Bifida &
Hydrocephalus took place in
Strasbourg in October and I attended
on behalf of SBHI. The day began with a
presentation by Dima Yared, Human
Rights Officer at the Regional Office for
Europe at the Office of the United
Nations High Commissioner for Human
Rights, Brussels. The rights of people
with disabilities is one of her areas of
focus.
Her presentation was on the Convention
on the rights of People with Disabilities.
She talked about how best to use the
convention in that it is an instrument
which recognises universal human rights
standards, how it identifies obligations on
States to promote and protect human
rights and how it sets out national and
international monitoring and implementation
mechanisms. She outlined that 128
countries had to date ratified the
convention. Ireland was the first country
she named when talking of the countries
which had signed but not ratified the
convention. She talked of the scope of
people included being in the convention
rather than a definition of what disability
is. This scope can be added to, to include
more and other disabilities. There is an
obligation to have access to minimum
standards. There is a responsibility for
legislation to be rights based and article
27 of the convention ensures monitoring.
Work in all sectors should be open, accessible,
inclusive and these are rights in the
open labour market. It is also a right that
you have access to career advancement,
self-employment should be promoted.
Other options like sheltered workshops
should only be used when all other
options in the open labour market are
proven not to work for an individual.
Reasonable accommodation in the
workplace is also a right. The responsibility
of implementation lies with everyone.
The next speaker was Andrea Nobs from
the technical university in Dortmund. She
talked about the work she is involved in to
promote the participation of people with
disabilities in the field of occupation and
how this is working well. We then heard
from participants from the lead organisation
in a Leonardo project which has 9
partner organisations in a number of
countries. The project works to promote
the employment of people with disabilities
in jobs which are not the stereotypical
office job sitting in front of a computer
that people would have perceived to be
the only thing people with disabilities
were capable of working at in the past. It
was then very interesting to hear from
some participants who have benefited
from participating on the project. Martin
Kunemund is the Project Manager and we
heard a very thorough overview of the
project from him.
We then heard from Diane Dodds MEP
and Scottish MEP Catherine Stihler. Diane
Dodds talked of her delight at hosting the
event as Spina Bifida and Hydrocephalus
were very close to her heart as she had a
son who had the condition and died age 9.
She talked of the great effort of people to
attend the event and was particularly
delighted to see such a great geographical
spread given that there were people from
26 countries attending the event. She
talked of the importance of keeping the
issues of Spina Bifida and Hydrocephalus
to the fore and that it was great that the
issue of aging with the condition was
being addressed in the launch of the
paper “UNFOLD”. The report is a call to
action to draw attention to the challenges
16 www.sbhi.ie

International
faced by people with SB and or H as they
age. It focuses on 3 main areas: Health,
Employment and Social Inclusion.
As was stated at the conference in Dublin
2010 there is no time to lose. Adults with
SB and or H need and deserve a lifelong
coordinated care structure. At the
conference in Stockholm this year the call
to action was unanimously approved.
The next few decades will see a major rise
in numbers of people living longer with
these conditions so it is extremely
important that policy makers take urgent
action to combat the problems/
challenging issues faced by the 1st generation
of people of senior years living with
these conditions to ensure that they will
have the ability to live their lives in the
same way as everyone else. If policy
holders choose to do nothing it could have
a severe economic and social impact.
People who live with the conditions, their
colleagues, family members, academic
experts and medical professionals have
provided the IF with evidence by way of
completing a survey. 19 countries
responded. Little is known about the
progress of these conditions as people age
and urgently more research is required to
ensure that those of us living and aging
with the conditions maintain good health
and live our lives equal to others.
Recommendations
Health, Independence and Quality of Life
are being compromised by the fears and
barriers that people with SB and or H are
experiencing as they approach old age.
With the proper multidisciplinary structures
these fears could be allayed and
could enable people with the conditions
to achieve a quality of life equal to others.
Policymakers need to recognise that the
aging and expanding group of persons
with SB and H is facing increasing and
serious challenges to live healthy lives and
fulfil their potential and that swift action is
required.
Policy makers also need to end health
inequalities now by ensuring that all
persons born with SB and or H have access
to the appropriate treatment, care and
support, provided to them in multidisciplinary
clinics. They also need to promote
social inclusion and employment of adults
with the conditions, beginning with the
promotion of inclusive education and
rehabilitation for children and adolescents
with the conditions. Awareness
campaigns are required to promote
positive perceptions and greater social
awareness towards people with the
conditions. Enabled access is required to
multidisciplinary clinics specific to the
complex needs of people aging with the
conditions. Education, employment and
the living environment need to improve
accessibility. Aids, assistive technology
and mobility equipment need to be
available at an affordable cost. Facilitate
and support capacity-building through
the development and strengthening of
national and/or local SBH associations
and parent support groups. Encourage
and facilitate international cooperation in
research and access to knowledge of
scientific and technical nature concerned
with all aspects of living with the conditions.
Diane
Dodds
MEP
EMPLOYMENT
Many people with both conditions fear
that employers fail to see past their
disability and therefore the person with
the disability is at a disadvantage
especially for the people aging with the
conditions. More flexibility of working
patterns and better understanding of the
conditions would increase the opportunity
of people with the conditions to
gain and maintain employment and assist
them to fulfil their potential particularly as
they age.
SOCIAL INCLUSION
Local support groups working together
with multidisciplinary clinics can offer
training and support for people living with
the conditions to enable them to become
and remain self-reliant, leading to better
opportunities to be and to feel socially
included. Increased support from national
and local authorities is needed to help
ease the burden on families and to ensure
the right of those born with the conditions
to live independently and be included in
the community.
To conclude this section of my report I will
quote Dr Timothy Brei who has Spina
Bifida: “We’ve grown beyond the boundaries
of established medical research. We
are the pioneers. Many adults with Spina
Bifida know more about their bodies than
the physicians they see.” I believe this to
be an extremely important quote in the
context of the whole paper as it for me
reiterates the fact that all policy decisionmakers
need to consult on an ongoing
basis with people affected by these conditions
in order that the correct paths are
taken in order to ensure the best possible
opportunities for people with the conditions
to live their lives in the same way as
every other person.
Art Exhibition
On the evening of the event there was a
launch of a photo exhibition and this was
a fantastic opportunity for seeing the
potential of people with both conditions
being realised in pictures. For the most
part the images were positive and shed a
greatly positive light on Spina Bifida and
Hydrocephalus. This exhibition can travel
and it can also be added to and in my
opinion is a great way of raising
awareness.
Proceedings ended with a get-together
hosted by Diane Dodds MEP and at this
event a number of people from the
different represented countries addressed
the event to highlight the work that they
are all doing in their respective countries. I
sat beside Diane Dodds MEP at this event
and had a great opportunity to talk to her
about the issues affecting us as an organisation.
She was not the only MEP I met as there
were bilateral meetings for 3 hours in the
afternoon where I met a number of Irish
MEPs where I also highlighted the issues
affecting us as an organisation. I will
continue to engage with the MEPs and
feedback all relevant information to SBHI.
Meetings with MEPs
l The first issue I spoke of was the lack of
a full time FSW in Donegal which
means that it is a very haphazard
situation as she only holds meetings in
Donegal twice monthly and is not
always available to Donegal members
at other times due to the size of the
area she is covering.
l Urology services in Ireland are very
poor for people with Spina Bifida/
Hydrocephalus as outlined in this
edition of the Ability.
l The hydrocephalus situation in the
country is also a difficult one in an
emergency situation as there is no
satisfactory emergency plan in place if
you are living outside Dublin. n
www.sbhi.ie 17

Activities
Saturday Fun
Club By Andrea Fox
On the 2nd and 4th Saturday of every
month I run a Saturday Fun Club for
members aged 4 to 12 years in the
National Resource Centre, Clondalkin,
from 11.30am to 1.30pm.
Each club is based on a different theme and
is filled with fun, educational and interactive
activities ranging from arts & crafts, cookery,
sports, and not to forget social outings from
time to time. The club is run on a voluntary
basis with volunteers from our Shine Project
and members of the association. I would like
to take this opportunity to thank all of the
volunteers very much for all your hard work
and dedication.
The aim of the club is to concentrate on
developing the participants’ existing skills
and learning new skills through fun-based
art and crafts projects. The programme
consists of a series of exercises to help
improve and develop hand and eye coordination,
concentration and self-confidence.
Each week the children work on a theme,
such as animals, transport, shapes, etc. The
activities are based on their own creative
ideas ensuring that the element of fear is
eliminated at all times. I prefer to use the
“Show Me Don’t Just Tell Me” method –
this way the children fully understand what
they are doing. I feel, as a member with
Hydrocephalus, that this is a more suitable
and successful way of learning how to do
things.
While all this is going on the parents are
given the chance to meet in the canteen, for
tea and a chat to share some of their life
experiences.
Parents with younger children who are three
years and under are still more than welcome
to come along to the parent group.
For more details or to come along, please
contact Andrea Fox (National Youth
Officer) on 087 1363264/ 01 4572329 or
afox@sbhi.ie
A LIST OF CLUB DATES FOR 2013
January
Saturday 12th January 2013:
Fun Club 11.30am – 1.30pm.
Saturday 26th January 2013:
Fun Club 11.30am – 1.30pm.
February:
Saturday 2nd February 2013:
Fun Club 11.30am – 1.30pm.
Saturday 23rd February 2013:
Fun Club 11.30am – 1.30pm.
March
Saturday 9th March 2013:
Fun Club 11.30am – 1.30pm.
Saturday 23rd March 2013:
Fun Club 11.30am – 1.30pm.
April
Saturday 13th April 2013:
Fun Club 11.30am – 1.30pm.
Saturday 27th April 2013:
Fun Club 11.30am – 1.30pm.
May
Saturday 11th May 2013:
Fun Club 11.30am – 1.30pm.
Saturday 25th May 2013:
Fun Club 11.30am – 1.30pm.
June
Saturday 8th June 2013:
Fun Club Educational Trip to
Dublin Zoo 11.00am.
Saturday 22nd June 2013:
Fun Club 11.30am – 1.30pm.
July
Saturday 13th July 2013:
Fun Club 11.30am – 1.30pm.
Saturday 27th July 2013:
Fun Club 11.30am – 1.30pm. n
CLOCKWISE
FROM TOP:
Conor Prendergast,
Saturday Club.
Pardy family
at the Zoo.
Saturday Club
Halloween Party.
Saturday Club
Halloween Party.
Saturday Club
cooking.
18 www.sbhi.ie

Peer Support
Help & Support
(Listening to the voice of members)
Listening and Changing Resources
and Supports:
SBHI became involved in this resource and
support programme in October 2012. This
programme was originally developed as a
direct response to a DFI (Disability Federation
of Ireland) and NAI (Neurological Alliance of
Ireland) Project “Supporting Organisations
for Mainstreaming: A Listening and Changing
Project”, funded by Genio. The aim of the
project is to enhance the capacity of people
with disabilities and their representative
organisations to advocate for access to
general community services and facilities. Six
organisations, including SBHI, initially participated
in the project. The three main objectives
of the project are:
1. To facilitate organisations to actively
listen to their members,
2. To support the members to envisage a
different future where they direct their
own lives,
3. To strategically plan appropriate
supports to realise this.
SBHI was offered a place to participate in this
project and has been working on it from
early October to date. The working group is
comprised of 4 SBHI adult members - Christy
O’Neill, Ann Richards, Gerry Maguire and
Frank Larkin, a Board member - Peter Landy,
staff members - Edel Browne-Curran (FSW),
Katie Kelly (Education Officer) and George
Kennedy (CEO). Since early October 2012, the
working group has been meeting to look at
the whole area of SBHI members supporting
each other through some kind of peer
support service where we can both support
each other and benefit from each other’s
experiences.
–––––––––––––––––––––––––––––––––––––
As an example of the need for this service,
in the recent past SBHI has received many
communications of a personal nature
where members are looking for help or
support. Included below are a few samples
of the kind of letters and issues received:
–––––––––––––––––––––––––––––––––––––
“I am a 19 year old male. I have Spina Bifida and
walk with calipers and sometimes use a wheelchair.
I have lots of friends, mainly disabled and
a few able bodied. I get on really well with one
of my able bodied friends. She is around the
same age as me. We chat regularly and
sometimes meet up to go shopping and for a
coffee. I think about her all of the time and
would love to have the courage to ask her out
on a proper date but am worried that she may
be shocked that my feelings towards her are
romantic and not just friends, and that she may
be freaked out at the prospect of a relationship
with a bloke. I just know that if I wasn’t disabled
that our friendship would have progressed to
another level by now. What do you think I
should do”
® Have you ever had a similar experience
® How did you cope
® How would you advise this person on
what is the best thing to do
–––––––––––––––––––––––––––––––––––––
“I am a 20 year old person with Spina Bifida. I’m
so tired of being different to everyone else. If I
want to go anywhere I have to rely on someone
to bring me. If I need to use the loo when I’m out
it is not just a short visit like everyone else has. I
have to worry about changing pads or
emptying catheters, and if I’m in company I’m
worried that it is so noticeable that I’m in the
toilet longer than others. I see my brothers and
sisters out with their partners and I know that
the likelihood is that I’ll never have a partner to
love me. I can see no brightness in this total
darkness. Some nights I go to bed praying that I
won’t wake up in the morning.”
® Given the fact that this is a problem
that Spina Bifida/Hydrocephalus can
bring to some people, do you have
similar thoughts and worries and how
did you cope with them
–––––––––––––––––––––––––––––––––––––
“I gave birth to my second child not long ago.
Scans during the pregnancy suggested that all
was not well, and sadly when my son was born
our worst fears were realised. My little boy was
born with Spina Bifida and Hydrocephalus.
Already in his short life he has had so many
surgeries, the main one being to close the large
opening at the base of his back. Despite all the
surgeries his “difference” is all too visible. I know
that many more surgeries may lie ahead
including shunt operations which will break my
heart as I watch him go through them. Despite
my best efforts to stay positive, I know that his
quality of life is going to be horrible. Although I
love him very much, I have to admit that there
have been times when I wish that my
pregnancy had ended prematurely either
naturally or surgically. I long to see him be able
to do all the things that his older brother can
do, but know that he never will.”
® Giving birth to a child with a serious
disability can be traumatic. While we
would love to see the day when there are
no babies born with Spina Bifida/
Hydrocephalus, sadly there are still cases
every year (up to 80 children born per
year in Ireland with Spina Bifida).
® If you are a parent with a young child or
if you were a parent in the past of a
child born with Spina Bifida/
Hydrocephalus, how did you cope
® Are there any tips you can pass on
® Have you ever had a similar experience
–––––––––––––––––––––––––––––––––––––
Feel free to send us your thoughts on
these important issues. Remember no one
has all the correct answers but we all have
our views so send yours to
peer2peersbhi@gmail.com. It is our
intention that, given the volume of correspondence
we receive on such issues, we
will have a dedicated section of the
magazine and on the website for those of
you who wish to write in with your
questions and for those who wish to pass
on their advice and suggestions.
–––––––––––––––––––––––––––––––––––––
We would love to hear what you think.
Do you think peer support is a good idea
What are the other types of issues/concerns/
problems that we might support each other
on through peer support in SBHI
Would you be interested yourself in sharing
your own experience and supporting other
members in SBHI through participating in a
peer support service
Let us know your thoughts: email us at
peer2peersbhi@gmail.com
Invitation…
We will be meeting with members
around the country over the next
couple of months to look at the needs
and opportunities for us as members of
SBHI to become involved in peer
support. We would love if you could
come to the meeting nearest to you and
let us know what you think.
(Meeting dates and locations will be
–––––––––––––––––––––––––––––––––––––
advertised in the next couple of weeks.)
After all, if we share all our experiences and
techniques to manage our cares and worries,
we might just lighten the burden of each
other’s disability together. This working
group is being led by members and we
would appreciate your guidance. n
www.sbhi.ie 19

Finance
The Financial
Impact of
Budget 2013
for People with
Disabilities
® The annual Respite Care Grant has been
reduced from a rate of €1,700 in 2012 to
€1,375 for 2013.
® The deep cuts to the Household Benefits
Package will directly affect people with
disabilities as they often have additional
costs in the areas of electricity, gas and
telephone.
® The prescription charge for medical card
holders has tripled from 50c to €1.50 per
item. This measure will greatly affect people
with chronic conditions and disabilities in
need of monthly medication.
® The Drug Payment Scheme threshold has
increased by 44% since 2010 where it was
just €100. Budget 2013 announced another
increase to €144. Families with a disabled
child/adult not covered by the Long-Term
Illness Scheme or Medical Card will be
hardest hit.
Although disability benefit levels have been
maintained people with disabilities income will
be greatly affected by this Budget. There are
threats of further cuts to vital disability services
in the Service Plan. Moreover the level of need
and number of people with disabilities is
growing.
Revenue and Tax Credits:
® Blind Tax Credit, Incapacitated Child Credit,
Home Carer Credit cut by 10%.
® Introduction of the Universal Social Charge.
® Rental tax credits reduced by 20%.
® VAT increased from 21% to 23% in 2012.
® Household charge of €100 introduced.
® Carbon tax on petrol, diesel, oil and gas.
Income Support:
® A 63% cut to the Telephone Allowance since
2011 down from €25.91 per month to
€9.50.
® Electricity and Gas Allowance cut with move
to cash/cash credit payments instead of
units.
® Respite care grant cut from €1,700 to
€1,375.
® Back to School Clothing Allowance cut.
Health:
® Savings of €5m (0.3 of 1% of Disability
Budget) to be found through shared
services, procurement and other initiatives
amongst Disability Service Providers and
Organisations.
® Drugs Payment Scheme threshold increased
by 44% since 2010 from €100 to €144 per
month in 2013.
® Prescription charge for medical card holders
tripled from 50 cent to €1.50.
® No money to meet growing demand and
waiting list for PA hours and Home Help.
Education Support:
® Allocation to VECs reduced.
® Pupil teacher ratio increased for PLC
courses.
® Reduced financial supports for Further
Education and Training scheme participants.
® Student contribution increased.
® Income threshold for student grants reduced.
Housing and Taxation:
® Introduction of the Local Property Tax.
® Cuts to the funding for housing adaptation
grant schemes by 32% to €35 million.
® Increased PRSI contribution for selfemployed.
® Introduction of carbon tax on solid fuels.
HEALTH
A total of €13.6bn has been allocated to the
health budget. This includes an additional
€150m in funding.
Additional Savings to be made in 2013:
Despite the extra allocation in funding provided
to Health, just over three quarters of a billion
Euro (€781m) in savings will have to be made in
2013 representing a major challenge for
services. Half of that is to be achieved through
cost efficiencies and re-organisation under
public service agreements. The savings were
outlined as follows:
® Reduction in the cost of Primary Care
Schemes (€323m);
® Pay related savings (€308m);
® Increased generation of private income in
public hospitals (€65m);
® Net savings on Department’s Vote (€60m);
® Savings on procurement (€20m);
® Other savings (€5m).
SBHI Comments:
On Budget day it was announced that savings of
€5m (0.3 of 1% of Disability Budget) will have to
be found through shared services, procurement
and other initiatives amongst Disability Service
providers and organisations.
Minister Reilly also stated, “just over half a billion
Euro in savings will have to be made next year
representing a major challenge for services.” But
no details have been provided yet about where
these cutbacks will fall. SBHI is advocating that
disability services be protected from further cuts.
Minister Kathleen Lynch welcomed the
commitment to restore the core community
services of home help, home care packages and
personal assistant hours. Community services
were recognised as necessary “to keep people
well at home, where they want to be, and out of
hospital and residential care”.
SBHI Comments:
SBHI welcomes Minister Lynch’s announcement of
the commitment to restore the core community
services but experience on the ground needs to be
monitored closely to ensure people benefit.
There is little recognition by the Government of the
unmet need in community services, particularly in
demand for new home help and PA hours noted in
the NPSDD Annual Reports. For example as many
people are waiting for PA service as currently
receive it.
Prescription Charge and Drug Payment
Scheme:
® The Prescription charge has been tripled
from 50c to €1.50.
® The monthly threshold for the Drugs
Payment Scheme is being increased from
€132 per month to €144 per month with
effect from 1st January 2013. The estimated
saving to the Exchequer of this measure is
€10m.
SBHI Comments:
The increase in the prescription charge for medical
card holders unfairly targets people with chronic
conditions and disabilities in need of monthly
medication. It will also increase the burden of
those trying to live with additional costs of
disability.
The Drugs Payment Scheme threshold has
increased by 44% since 2010 where it was just
€100. Families with a disabled child / adult not
covered by the Long-Term Illness Scheme or
Medical Card will be hardest hit.
Mental Health:
® The allocation of a further €35m for mental
health services and in line with the
blueprint set out in “Vision for Change” is to
be welcomed.
20 www.sbhi.ie

Finance
® Minister Kathleen Lynch pledged that she will
be engaging with the HSE directly to ensure
that the developments to be put in place with
this additional funding are fully reflected in
the National Service Plan for 2013.
SBHI Comments:
The key challenge will be that the funding is
targeted and used as it was intended to improve
mental health services, in contrast to the
experience of 2012.
Free GP care for people with certain
prescribed illnesses:
SBHI welcomes the €15m necessary to provide
free GP care for people with certain prescribed
illnesses which has been committed in Budget
2012. But many disabling conditions will still not
be covered.
Other Positive Measures:
® SBHI welcomes the significant savings to be
made in relation to the cost of prescribed
drugs and medicines on foot of a new
agreement with the Irish Pharmaceutical
Healthcare Association (IPHA). This is
expected to bring in savings in excess of
€400m over the next three years.
® Qualified nurses will be offered the opportunity
to apply to take part in a placement
programme in the health services for a
specific period. SBHI hopes that voluntary
service providers can benefit from much
needed nursing to meet demands in certain
areas in the disability sector.
SOCIAL PROTECTION
Expenditure on social welfare payments and
services will reach €20.8 billion in 2012 and
expenditure in 2013 is expected to be €20.26
billion. The rates for all core weekly payments
will not change however cuts to important cost
of disability measures will significantly impact
people with disabilities.
Disability Payments:
SBHI welcomes the fact that people with disabilities
will continue to get their basic payments at
current levels. There are no changes to the Fuel
Allowance, Free Travel and Free Television
Licence which values are being maintained.
However people are adversely affected by the
cuts announced to the Household Benefits
Package and the Respite Care Grant.
The Household Benefits Package:
The followings cuts were announced:
® The value of the Telephone Allowance has
been reduced by half. The new monthly rate
is €9.50 per month down from €22.60 in
2012.
® The Electricity/Gas Allowance has been
readjusted so that the same amount is paid
regardless of whether it is winter or summer.
The standard rate of €35 per month will
show as cash credit for those who receive a
bill or be paid as a cash allowance.
SBHI Comments:
The Telephone and Electricity/Gas Allowance are
important cost of disability measures, and this is
the second cut to the telephone allowance and
electricity/gas allowance in the past two years.
In 2011 the Telephone Allowance was cut from
€25.91 per month to €22.60 and now to just
€9.50 per month, representing a cut of 63% on the
2011 allowance.
The hardest hit by the cut in the Telephone
Allowance will be people with disabilities who live
in institutions and those who are isolated at home.
People with chronic conditions and older people
will also be impacted severely.
In addition, the Electricity and Gas Allowance have
already been cut in 2011. The electricity cash
payment was reduced from €43.80 a month to
€35.80 a month and the equivalent annual value
of the Gas Allowance was also adjusted from €489
to €393. Heating is critical for many people with
disabilities, and these serial cuts impinge on their
basic standard of living.
Carers:
® SBHI welcomes the fact that the half-rate
Carers Allowance has not been cut and will
continue to be paid to full-time carers who
are also getting another social welfare
payment.
® The weekly rates of Carer's Allowance and
Carer's Benefit will also be maintained in
2013, and carers who are caring for more
than one person will continue to retain the
extra weekly payment that they receive.
® The Department will continue to pay the
annual Respite Care Grant to carers however
this has been reduced from a rate of €1,700
in 2012 to €1,375.
SBHI Comments:
The 20% cut in respite grant is unacceptable for
families, who already incur significant disability
related costs. SBHI is strongly opposing this cut, as
inhumane and short-sighted.
Older People:
Older people will continue to get their State
Pension at current levels. There are no changes
to the Fuel Allowance, Free Travel, Free Television
Licence, Over 80 Allowance, Islander Allowance
and the Living Alone Allowance. Their values are
being maintained. However they are impacted
by the cuts announced to the Household
Benefits Package.
Job Activation:
Minister Burton announced that she is providing
an extra 10,000 work activation places for social
welfare customers next year. This investment is,
according to the Minister, “consistent with this
government's priority of getting people back to
work or getting them back to education or
training so they will improve their chances of
getting a job in the future”. She also describes
this as a “progressive first step on the road to
building a social protection system that will
ultimately provide our citizens with better
services." The employment programme
measures, which will cost €11 million are:
® Increasing the number of JobBridge
Internships by an additional 2,500 places at
a cost of €2 million;
® Providing an additional 2,500 Tús places,
which will cost €4.6 million;
® The Community Employment Programme is
to get 2,000 extra places at a cost of €2.96
million.
® In addition to these, €1.44 million will be
made available for a new Local Authority
Social Employment Scheme with 3,000
places.
SBHI Comments:
Job activation is important because
unemployment amongst people with disabilities is
very high (31% compared to 19% of the general
population according to Census 2011). The modest
measures announced in the Budget need to benefit
people with disabilities as much as for others
without work.
SBHI is concerned at the consistent pattern of
announcing new activation measures that are
open to jobseekers but not those on disability
payments.
SBHI lobbied to change criteria on the JobBridge
and Tús Schemes so that they are now accessible
to people on disability payments.
However the same limited criteria has been
applied to Intreo, ‘the new FÁS’ or one stop shop
for all employment and income supports now
being rolled out by the Department.
In this context, SBHI has serious concern the new
Local Authority Social Employment Scheme will
not be open to people on Disability Allowance or
those on other disability related payments. We
intend to follow up with the Department on this
issue.
Jobseekers:
There will be changes to the Jobseeker's Benefit
scheme.
® From 3rd April next, the length of time
during which people can avail of this
scheme is being reduced from 12 months to
9 months for people with 260 or more PRSI
contributions paid and from 9 months to 6
months for people with less than 260 PRSI
contributions paid.
® Recipients of Jobseeker's Benefit who, on
the 3rd April 2013 have been receiving a
payment for 6 months or more (or 3 months
in the case of those with less than 260
contributions paid) will not be affected.
Childcare:
Minister Burton announced the ‘Children Plus
Initiative’ to provide a range of childcare and
child welfare provisions in 2013. The total cost is
to be €18.5 million. The initiative will comprise:
® Over 6,000 afterschool childcare places for
children in primary school from low income
backgrounds where parents are availing of
employment opportunities. It is a joint
initiative with the Department of Children
and Youth Affairs (€14m);
® An additional €2m is being allocated to
school meals programme to provide regular,
nutritious food to disadvantaged children;
® €2.5m in funding will be allocated to the
Department of Children and Youth Affairs
for its Area Based Child Poverty Initiative.
This is a joint initiative targeting key areas
including child development, educational
disadvantage, health, well-being and
parenting.
www.sbhi.ie 21

Finance
SBHI Comments:
Disadvantage due to disability extends beyond
areas of deprivation. These measures need to be
monitored in terms of mainstreaming and
ensuring that the afterschool places are accessible
to children with disabilities and to ensure parents
with disabilities can access the childcare premises.
Child Benefit:
The rate of Child Benefit has been cut since 2010
impacting on all families including those where
the head of the household has a disability and is
already at risk of poverty.
Child Benefit rates 2009 to 2014
2009 2010 2011 2012 2013 2014
1 CHILD 166 150 140 140 130
2 CHILDREN 166 150 140 140 130
3 CHILDREN 203 187 167 148 138
4+ CHILDREN 203 187 170 160 140
SBHI Comments:
There has been a 22% cut to Child Benefit since
2010 for those with 1 or 2 children, equivalent to
€36.
Larger families are more at risk of poverty and yet
there has been a cut of between 31%-32% for
families with 3 or more children in the same time
frame with further reductions planned for 2014.
This is despite evidence that social transfers
including child benefit have been effective in
combating child poverty in the past (SILC, 2010).
In particular, households where the head has a
disability are three times more likely to be at risk of
poverty (SILC, 2010). The reduction in Child Benefit
will push them into greater hardship.
Back to School Clothing and Footwear
Allowance:
The Back to School Clothing and Footwear
Allowance will be reduced by €50 from €150 to
€100 for children aged between 4 years and 11
years. It will be reduced by €50 from €250 to
€200 for children aged 12 years to 17 years or
aged 18 years to 22 years if in full-time
education.
Back to Education Allowance:
® The Cost of Education Allowance (currently
€300) payable to Back to Education
Allowance participants will be discontinued
for new and existing participants (2013).
® The weekly rate payable to new Back to
Education Allowance participants will be
equal to their previous social protection
payment (1 January 2013).
® A standard maximum rate of €160 per week
will apply to new Back to Education
Allowance participants who were previously
getting an age-related reduced rate of
Jobseeker's Allowance (1 January 2013).
EDUCATION
Primary and Secondary Education Pupil
Teacher Ratio:
® The pupil teacher ratio for primary and
secondary schools remains unchanged at
28:1 and 19:1 respectively.
® The pupil teacher ratio for fee-paying, postprimary
schools will increase by 2 points,
from 21:1 to 23:1 from September 2013.
® No reduction in the number of Resource
Teachers or Special Needs Assistants
(SNAs). There will be 9,950 Resource
Teacher positions and 10,575 SNA
positions for the 2013-2014 school year.
® No overall changes to staffing levels or
funding for disadvantaged schools in the
DEIS (Delivery of Equality of Opportunity
in Schools) scheme.
® Measures are also being taken in order to
reduce the substitution costs for teachers
and Special Needs Assistants (SNA) in
schools, with effect from May 1st 2013.
Further Education and Training:
® The allocation to VECs will be reduced by
€13.2 in 2013 which is not expected to
reduce service levels.
® The pupil teacher ratio in Post Leaving
Certificate (PLC) programmes increased by
2 points, changing from 17:1 to 19:1, to
bring it in line with the pupil teacher ratio
in mainstream second level schools, with
effect from September 2013. The number
of PLC places should not be affected.
® From January, participants on the
Vocational Training Opportunities Scheme
(VTOS), Youthreach and FÁS further
education and training programmes who
move from Jobseeker’s Payments will no
longer have their new payments increased
to the maximum €188 per week, if their
jobseeker's payment is less than this.
However, people under 25 who were
getting an age-related reduced rate of
Jobseeker’s Allowance will get a standard
maximum rate of €160 per week.
® The student contribution at third level will
rise by €250 in 2013 to €2,500 and by
€250 for the following two years to a
maximum of €3,000 by 2015.
® The income thresholds for entitlement to
the student grant are reduced by 3% for
people qualifying in 2013. It will see the
threshold for the maximum standard rate
of grant reduced from €41,110 to
€39,875.
® HEIs will have their allocation reduced on a
one off basis by €25 million. The Minister
is requesting the Higher Education
Authority to ensure that this measure will
not impact on frontline student services.
Labour Market Activation:
€48 million has been provided in the National
Training Fund for labour activation measures
for the unemployed and targeted skills
training in 2013.The National Training Fund
expenditure will provide:
® €20 million under the Labour Market
Education and Training Fund to provide
6,500 places in 2013 for people who are
long-term unemployed.
® €23 million for the Springboard initiative
to increase the part-time higher education
opportunities for unemployed people.
® €5 million for a second phase of ICT Skills
Conversion courses.
Resourcing Special Projects:
® The Literacy and Numeracy Strategy will
continue to be rolled out.
® The overhaul of the Junior Cycle will be
supported by an investment of €3 million in
2013, and €8.7 million in 2014.
® The roll-out of high speed broadband will
continue.
® The Schools Building Programme will
continue for new schools and major extensions.
SBHI Comments:
SBHI welcomes the fact that the numbers of
Special Needs Assistants and Resource teachers
will not be reduced in 2013.
The continued roll out of the National Literacy and
Numeracy Strategy is positive.
SBHI will seek further clarification to ensure that
the activation programmes announced are accessible
to all people with disabilities, including those
on disability payments.
The increase in the student contribution will be
even harder for students with disabilities who
already incur additional costs of disability.
HOUSING
The housing budget provides a €310m
allocation in current spending while €275m will
be invested through capital expenditure in 2013.
It has been estimated that in excess of 5,000
units will be provided for social housing in 2013.
This will include:
® 350 units for people with special housing
needs.
® 150 units specifically for people leaving
institutional care.
® An additional 400 permanent homes
delivered through capital expenditure
under the Social Housing Investment
Programme.
® 300 transfers under the Mortgage to Rent
Scheme.
® Some 4,000 units will be delivered under
social leasing, including property transfers
from NAMA, the Rental Accommodation
Scheme (RAS) and mortgage to lease.
SBHI Comments:
The Congregated Settings Implementation Plan is
reflected in the commitment to supply 150 units
for people leaving institutional care.
Budget 2013 cuts the funding for housing
adaptation grant schemes by 32% to €35 million,
despite repeated Government assertions that this
was a priority area because it enables people to
remain in their own homes. Stricter targeting of
grants is likely to result, with more people in need
denied assistance.
SBHI is aware that there are to be no additional
new build projects to accommodate people with
disabilities under CAS (i.e. the 350 are already
approved and target the homeless and elderly).
The 400 permanent homes under the SHIP will
most likely be leased arrangements and bank
cooperation is an issue.
The 300 transfers under the Mortgage to Rent
Scheme will be taken from the social housing
budget.
22 www.sbhi.ie

Finance
TAXATION
Source: PWC (2013) Exploring what it means for
you, Budget 2013.
http://www.pwc.ie/budget/index.jhtml
As expected there were no increases to
corporate or income tax rates. Property, PRSI,
alcohol, cigarettes, cars and capital taxes made
up the bulk of the tax adjustment. After the
increase in VAT from 21% to 23% in Budget 2012,
Ireland currently sits almost two percentage
points above the EU average.
PRSI and Universal Social Charge (USC)
Changes:
The following changes will be made to selfemployed
and employed:
® The minimum amount of PRSI contribution
for a self-employed individual will increase
from €253 per annum to €500 per annum.
® The weekly employee PRSI exemption of
€127 will be abolished. This will mean that,
on average, employees will pay an extra €5
per week, €22 per month or €264 per year
in PRSI.
® The reduced rate of USC which applies to
medical card holders and those over 70
years old will be discontinued from 1
January 2013 for those with income in
excess of €60k per annum.
From January 2013, the Employee's PRSI-Free
Allowance of €127 per week (for those paying
PRSI Class A, E and H) and €26 per week (for
those paying PRSI Class B, C and D) will be
abolished.
SBHI Comments:
Self-employment is an important means for
people with disabilities to work. These changes will
adversely affect the self-employed who have
additional costs of disabilities and are not entitled
to any Cost of Disability tax credit or payment. In
The first World Spina Bifida and Hydrocephalus Day (25th
October 2012) was celebrated in the European Parliament in
Strasbourg with a Photography Exhibition entitled ‘UNFOLD
their potential, (y)our Return on Investment’.
The exhibition was organised by IF with the Patronage of Mrs.
Diane Dodds (Non-attached Member of European Parliament)
and the participation of people with Spina Bifida and
Hydrocephalus and their representative organisations throughout
the world. The theme of the 2012 edition of the World Spina Bifida
and Hydrocephalus Day was ‘UNFOLD their potential, (y)our
Return on Investment’ which was used as a title for the exhibition.
This theme aimed at conveying the message that policy makers
need to invest and capitalise expertise to unlock the vast
potential of people with Spina Bifida and Hydrocephalus.
The exhibition took place from the 22nd to the 25th October 2012
in the Galerie Sud, 1st floor LOW building of the European
Parliament in Strasbourg, and shows pictures of people with Spina
addition, it may discourage disabled people from
considering this route into employment.
VAT:
There was no change in the standard rate of VAT
(23%) which is welcomed news for those with
additional costs of disability. Any hike would
have increased the cost of consumer goods such
as food and clothing.
Motor Tax Increases:
Motor tax has been increased by 12% which is a
significant rise and will impact on family income.
Local Property Tax:
® Local Property Tax was introduced to meet
the goal of broadening the tax base while
minimising the impact on economic growth
and employment.
® The rate of the property tax will be 0.18%
with the higher rate of 0.25% on values over
€1m.
® Self-assessment on the value of the home
will apply and deferred payment will be a
possibility.
SBHI Comments:
The Budget related legislation makes virtually all
local authority and voluntary housing association
housing liable to property tax, unless appropriately
amended. This will cause a significant burden on
the delivery of this type of housing which is so
important to support independent living for
disabled people in their community.
Although the rates of property tax are lower than
was widely expected (and certainly much lower
than the 0.5% initially suggested by the IMF), its
impact on property owners, in particular the lower
paid and those in negative equity, should not be
underestimated.
In addition, from 2015, local authorities will have
the power to vary rates by 15% above or below the
central national rates.
The first World Spina Bifida
and Hydrocephalus Day
Carbon Tax:
Carbon tax will be introduced on a phased basis
on solid fuels.
SBHI Comments:
This will increase the cost of heating for disabled
people who rely on this type of fuel, most likely in
rural areas. However, the impact will not be felt
until after this winter 2012.
CHARITY DONATIONS
Overall, fundraising has been given a boost in
this Budget with Charities hoping to gain
€18m from changes to donations scheme.
Source: Irish Charities Tax Research (ICTR).
Donations made via the revenue commissioners’
tax relief scheme currently contribute €30
million annually to charities. With the changes
outlined in the Budget, the Irish Charities Tax
Research estimate that charities will benefit by a
further €18 million annually. In practice it
means that for every €2 donated by the public
to a charity via the scheme, the government will
effectively add a euro “top up”. The change will
be cost neutral to the Exchequer as the relief will
be simply diverted to the charity instead of
refunded to the donor.
SBHI Comments:
® SBHI welcomes the valuable recognition of
work of charities.
® The measures should help incentive and
promote professional fundraising practices.
® It will help give autonomy for more organisations
from state funding.
® SBHI emphasises however that charitable /
voluntary activity is no substitute for the
State’s responsibility to provide essential
services. n
Bifida and Hydrocephalus from
eighteen different countries
covering four continents. The
exhibition was formally opened
with a ceremony on the evening
of the 23rd followed by a cocktail
reception.
The exhibition is a result of a
photography competition
organised by IF which received over 181 pictures from 21 associations
representing 19 different countries from 5 continents. A jury
composed of 3 professional photographers, a person with Spina
Bifida, the exhibition’s designer and Diane Dodds (Non-attached
Member of the European Parliament), conducted three stages of
selection and the winning picture was announced at the opening
ceremony on the 23rd October 2012 at the European Parliament
in Strasbourg. n
INTERNATIONAL FEDERATION
FOR SPINA BIFIDA AND HYDROCEPHALUS
www.sbhi.ie 23

Picture Parade
Saturday Club Halloween
in Dublin
24 www.sbhi.ie

Make Your Voice Heard
We need a Paediatric Consultant
Urologist Immediately!
Children with Spina Bifida are not
receiving any urological review by a
Consultant Urologist in Temple Street.
Approximately 300 babies have been born
since 2009 with a Neural Tube Defect (NTD) in
Ireland. This situation is totally unacceptable
and one that SBHI is aware of and eager to be
a voice on behalf of the children with Spina
Bifida who are not being treated in the
manner in which they deserve.
On March 30th 2009, George Kennedy (CEO),
Edel Browne-Curran (FSW) and Sally Hibbs
(FSW) attended a meeting in Dr Steevens
Hospital to discuss the transition of the care of
children with Spina Bifida from Our Lady’s
Hospital for Sick Children, Crumlin to Temple
Street. Concerns were raised at this meeting
over the shortage of Neurosurgeons in Ireland
and also the complete lack of Urology
services to cover the care of children with SB.
The answer at this meeting was that the
“funding is prioritised and it is a priority post
within the HSE”. In May 2009, Ms Helen
Byrne, HSE, came and spoke at our National
Conference in Ballinasloe and reiterated this
commitment. From that stage onwards we
worked with the HSE and the Dept of Health
to fill this position without success.
Finally, in January 2012, the situation had
reached an intolerable level and we contacted
the HSE and demanded that they meet with
us to discuss this issue. This meeting was
attended by Helen Byrne (HSE), Valerie Wade
(HSE), Lucy Nugent (Temple Street: Patient
Services) and Sharon Hayden (Crumlin
Hospital: Patient Services). At this meeting the
situation was again highlighted as being a
priority post and that it should be filled by the
year end. Furthermore, we requested that the
HSE would attend our AGM conference and
make a statement to this effect on May 11th
2012 on our Professional’s Day. Unfortunately,
this offer was not taken up by the HSE on this
occasion. In order to garner support, SBHI
national office in conjunction with the Cork
Association, put together a Continence Day in
Cork on November 24th 2012. However, since
this meeting, we have continued to query the
HSE and the Government regarding this
situation and the answer we get is still the
same.
SBHI had an ideal opportunity to raise this
specific issue to the Joint Oireachtas
Committee on Health & Children on Thursday
December 6th 2012. As a result of this
briefing, the members of the Committee have
all individually written to the Minister for
Health, Dr James Reilly, seeking answers as to
the delay on the appointment of the Urologist
in Temple Street. The Committee members
have also written individually to the HSE to
highlight the urgency of this vacant post
being filled.
Parliamentary Questions have also been
raised as a knock-on effect of this committee
meeting to seek clarification as to the
situation as to the appointment. The following
is a question that was asked by Deputy Finian
McGrath of Minister for Health:
309. Deputy Finian McGrath
asked the Minister for Health the position
regarding a urologist for Temple Street
Hospital, Dublin (details supplied)
[57568/12].
Minister for Health (Deputy James Reilly): The
Children's University Hospital, Temple Street,
is the national tertiary care centre for Spina
Bifida and Hydrocephalus. All infants born in
Ireland with Spina Bifida are transferred to
Temple Street after birth for ongoing
neonatal management.
A multi-disciplinary Spina Bifida clinic was
established in Temple Street in February 2011.
A recruitment process was underway in
2009/2010 from which the Hospital hoped to
recruit a urologist, but unfortunately that
recruitment process found no suitable
candidate for the post. However, approval has
been given by the HSE to recruit a Consultant
Urologist and it is hoped that this post will be
advertised before year end. The HSE are
hopeful that this new recruitment process will
succeed in hiring a suitable candidate.
Children requiring urgent urological input are
prioritised clinically and seen in the UK under
the Treatment Abroad Scheme. Where
patients have been refused under the
Treatment Abroad Scheme, the hospital is
currently in final negotiations with St Georges
Hospital in London with a view to having the
hospital treat these children, pending the
appointment of a permanent urologist.
Arrangements are currently being made to
have a consultant visit from the UK to cover
clinical priorities here. This Government is
acutely aware of the challenges that patients
with Spina Bifida and their families face in
managing their condition. I am committed to
providing the best possible health service and
will continue to work with the HSE to ensure
the best possible outcomes for these patients.
The Current Situation:
There is one paediatric urologist at present in
Crumlin Hospital (children attending Temple
Street do not have a Urologist) and this
consultant is only looking after children with
SB in extreme situations. The paediatric
urologist consultant in Cork reviews children
in the south west region and is not in a
position to see any Temple Street patients in
the interim.
All children with SB have continence issues as
a result of this condition and children are
being denied the important service that can
assist to improve their quality of life.
In many cases children with SB are, therefore,
going to school wearing nappies / pads as
they are not being given the alternative treatments
that they should be able to avail of.
Children with SB are in a high risk category for
irreversible kidney damage, which in time can
lead to end stage renal failure and possibly
death if not monitored on an on-going basis.
Urology for our children is not an optional
add-on to their care that they desire; it is a
necessary part of their care.
Kidney failure is a disaster, but it is
predictable and preventable if the kidneys
are being adequately monitored.
We are aware that the additional Urology post
is in the pipeline, however, it has been in the
pipeline since 2009 with no outcome for our
children. We have been at meetings since
2009 where this specific issue was discussed
and we were informed that the position was
prioritised to be filled at that stage. The story is
still the same but the date of each meeting has
just changed. We have tried to solve this issue
through negotiating up to now so we feel now
that we need to use an alternative approach.
We want to see a positive move towards
appointing a urologist to provide the
important care that our children need. As the
national organisation representing people
with Spina Bifida we want to ensure that the
best possible standard of care is available to
our members. The following is a link to a
petition that was set up by a parent, Sarah
Lynch (Wicklow Branch), in late November
2012 and it is an on-line petition for this cause.
http://www.gopetition.com/petitions/appointa-urologist-to-temple-street.html
It is extremely difficult to watch children not
get the level of medical care that they need
and that is why we are calling on you here to
support us to ensure that this consultant’s
post gets filled in the immediate future. SBHI is
here to be the voice for you and we want to
ensure that the Government feels the pressure
of all our voices together as one on this
important issue.
If you have any queries on this issue,
please contact Edel Browne-Curran on
ebrowne@sbhi.ie , 086-8520616 or
01-4572329. n
www.sbhi.ie 25

Around the Country
Around the Country
DUBLIN
Almost a year into the new committee and
what an exciting year it has been. We have met
some wonderful people and it’s great to get to
know the members and their families. We are
coming to grips with our members’ needs and
are gradually providing activities needed by
members. Christmas has been and gone but
hopefully the good memories linger and we are
looking forward positively to the year ahead.
We held our Christmas parties for the children
and adults in the Clarion Hotel, Liffey Valley, on
December 15th and we feel both were a great
success. It was heart-warming to see the
children's faces when they met Santa. For
myself it was a very emotional but a happy
day and it was great to meet all the families
and I hope everyone enjoyed themselves. The
Abba Christmas event got the adults into the
Christmas spirit and everyone danced the
night away. The carol singing in St Stephen’s
Green Shopping Centre on Dec 22nd was an
amazing success and great fun with great
Christmas spirit abounding and it also raised
over €1,000. We hope to make this an annual
event and one that many more of us will enjoy.
Some members have met Cheryl Rego (our
nutritional therapist ) at her talk and hands-on
demonstration which was held in the NRC
Clondalkin. Cheryl is inspiring and passionate
about cooking and nutrition, a wonderful
afternoon was had by all on 19th Jan. We got
to sample all we cooked and went home with
lots of lovely recipes to try out ourselves. We
hope many more of you will meet Cheryl as
the year unfolds. Part of our vision this year is
to improve the health and well-being of our
members and we would like to welcome
Cheryl Rego our nutritional therapist/lifecoach
on board who will assist us in this forthcoming
year.
Don’t forget the many activities that we run
regularly. Particularly we have an activity club
for 14 to 17 year olds commencing on
Saturday February 16th and the entertainment
night for 18 to 25 year olds which
will be held in the Liffey Valley Clarion Hotel
on Friday February 8th. These activities are in
conjunction with the monthly activities held
in the Aisling Hotel. For full details on these
activities and also the many others run by us
please contact Vickie on 01-8485227.
Hopefully you all have a very successful,
happy and healthy New Year.
– Marie Jordan
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
________________________________
AISLING JOYCE
(Mayo/Leitrim/Roscommon/Sligo/
Galway/Donegal)
ajoyce@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
________________________________
Dublin members at celebration of World Spina Bifida & Hydrocephalus Day in Clondalkin
DEIRDRE GALLAGHER
(Cork/Kerry)
dgallagher@sbhi.ie 086 819 4791. n
Dublin Branch members meet Santa: Marie Farrell, Marie Jordan,
Sarah McGuckin, Lisa Algan, Siobhan O'Kelly.
Megan and Sean, Dublin Branch, at the Christmas Lunch.
26 www.sbhi.ie

Around the Country
DUBLIN NORTH –EAST REGION
Dublin North East Parent Support
Groups:
Hazel will be holding parent support
groups in your area on a quarterly basis
throughout 2013. She will post out invites
to all parents informing you of where and
when.
Dublin North East Family Support
Regional Clinics are:
Meath - Mondays in the Ardboyne Hotel,
Navan (Contact Hazel on 086-8194790 for
an appointment).
Cavan - Every 2nd Tuesday in IWA Centre,
Cavan (Contact Hazel for an appointment).
North Co. Dublin - Wednesdays, SBHI
Resource Centre Clonshaugh (Contact
Hazel for an appointment).
Monaghan - Thursdays in the Four Seasons
Hotel, Monaghan (Contact Hazel for an
appointment).
Up and Coming Events in Dublin North
East:
WREC - Wheelchair Rugby European
Championship Qualifiers - Ireland 2013.
Date: 7th-9th Feb 2013.
Where: Gormanston College, Co. Meath.
So come and support the wheels in green.
Free admission. For more information
please call Hazel on 086-8194790. n
National Learning Network
are holding an information morning
for people who are out of work
due to accident, illness or disability
on Thurs 14th Feb 2013 at 9.30am
in their office on Rampart Road,
Dundalk, Co. Louth.
Tel: 042- 9328441.
DONEGAL
Hydrocephalus Day, Donegal, 6th October 2012
The Hydrocephalus Study Day in Donegal took place on the
6th October 2012 in the Great Northern Hotel, Bundoran, Co.
Donegal. The day proved a great success with more than 50
people attending including parents of children with the
condition and adult members. The speakers on the day
included Senior OT Alice Rajaratnam, Katie Kelly Educational
Officer, John Hayes and Denise Curran from the HSE and
Anna Louise Coonan, member of the Association. The study
day was chaired by Frank Larkin, Treasurer of the Donegal
Branch of Spina Bifida Hydrocephalus Ireland.
It proved a very informative and interesting day and all who
attended seemed to enjoy it and gained extra insight into
the complex condition of Hydrocephalus. A huge thank you
to the Donegal Branch for all their work in organising the
day and the HSE Donegal for providing funding for the day,
which meant it could be provided free of charge for all
members and families.
– Aisling Joyce,
Family Support Worker for the West and Donegal.
Some of the panel of speakers at the Hydrocephalus Study Day
in Donegal.
Some of the attendance at the Hydrocephalus Study Day
in Donegal.
www.sbhi.ie 27

Around the Country
KILDARE
Kildare SBHI Christmas Party
Spina Bifida Hydrocephalus Ireland (SBHI), Kildare Branch, had
around 110 adults and children from Kildare attending their
annual Christmas Party in the Keadeen Hotel, Newbridge, on 18th
December last. Mr George Kennedy, CEO of SBHI national organisation,
also attended as a guest of the Branch. This was the largest
gathering of Kildare members in the history of the Branch, which
is a tribute to the hard working branch committee. The main
entertainment for the children was provided by the hilarious
Reuben from RTE Junior (see www.rte.ie/rtejr/presenters.html),
and of course Santa, accompanied by two mischievous elves, who
was a great hit and had presents for all the children.
Children in attendance enjoying Reuben the entertainer.
Also in attendance on the day was Margaret O’Gorman who, in her
capacity as committee member of Network Ireland (Kildare), and
also in a personal capacity with her husband Seán (of Ambit
Financial Services), has helped raise significant funds for Kildare
SBHI. Other such supporters of our Branch in attendance were
Margaret and Joe Murphy, branch members who have run
Ballroom of Romance for 26 years now, Mary FitzSimons (branch
member who completed triathlon) and Mary’s friend Ger Brady
who ran the Dublin City Marathon. n
Conor Prendergast with Santa.
Mary Fitzsimons and Ger Brady with members of Kildare Branch.
Liz Scully, Nessa Ashe and Julieanne Bell.
The Lalor family.
The Delaney family.
28 www.sbhi.ie

Around the Country
KILDARE (CONT’D)
Presentation to Margaret and Sean O'Gorman.
A Big Thank You…
SBHI would like to thank a new
parent, Mark Doyle, who
completed the Run a Muck
Challenge on Saturday October
20th 2012, raising much needed
€1,942 for the Association. It is a
difficult time to raise and it is a
wonderful achievement. We
would like to wish Mark,
Caitriona and their beautiful son
Éanna, all the best for 2013 and
welcome them to SBHI. n
Mark
Doyle
Run a
Muck
Aiden Lalor, Joe Murphy, Margaret Murphy, Pete Shinnors,
Joanne Murphy, Bryan Dunne and Anna Shinnors.
Kildare Young Adults Group
The group in Kildare meets on the last Wednesday of each
month in Fate Chinese Restaurant, Naas, from 7.30pm. The group
is open to members who are between the ages of 18 years to 35
years of age. It is an ideal opportunity for you to catch up with
some friends or maybe meet new people and discuss topics that
are relevant to your life and enjoy the company. The leader of the
group in Kildare is an adult member from Naas, Olivia Delaney,
and the Family Support Worker, Edel, also comes along on the
night. We are always open to new people coming along to the
nights so we would love to hear from you. Please contact either
Olivia on 085-8180760 or Edel on 086-8520616. n
Happy new year to you all! I’m really
looking forward to meeting and
welcoming members new to us, and of
course continuing to support members
that I know very well!
TERENURE
Coffee Morning / Kids Play Date (0-6yrs)
Second Thursday of the Month,
10.00am – 12.00pm,
Bettystown
WICKLOW / SOUTH DUBLIN
Panda Play Cafe, Terenure Rugby Club,
Greenlea Grove, Terenure, D6.
Join us for a cuppa and a chat, a great
chance to meet other parents and a lovely
place for the kids to play!
BRAY
On the second Tuesday of the month I am
available in Villa Pacis, Putland Road, Bray to
meet and chat. If you need any info or
support give me a call to arrange to meet
there – 087 2209 625.
WICKLOW TOWN
On the third Wednesday of the month I am
available in The Grand Hotel, Wicklow Town,
to meet and chat. If you need info or
support give me a call to arrange to meet
there – 087 2209 625
NRC
If you would like to meet in the National
Resource Centre, Clondalkin, for info or
support give me a call to arrange a time
that suits you – 087 2209 625.
Other
If any of the above don’t suit you, please
don’t hesitate to give me a call and we can
make alternative arrangements in your own
locality at a time that suits you!
The Wicklow Branch has a mobile home in Bettystown which is open to all members
around the country to avail of. It is available throughout the year so if you would like a
short or long break please contact Thelma @ 087 288 3279, thelmacloake1@gmail.com,
or the Family Support Worker in your area.
Email
Some members have found that email is an
easier way to link in with the FSW service. If
you would like to make contact by email
please contact me at criordan@sbhi.ie n
www.sbhi.ie 29

Around the Country
WEST
MONTHLY CLINICS
Mayo/Roscommon/Leitrim Clinic and
Visits take place on the 1st Tuesday of the
month in a different location each month
in line with calls and interest per area. If
you would like a clinic in your area please
contact Aisling on 087-9395371.
Donegal Clinic will take place on the 1st
Thursday of the month in Co. Donegal in
various locations in line with calls and
interest. If you would like a clinic in your
area please contact Aisling on 087-
9395371.
Sligo Clinic / Visits are held on the 2nd
Tuesday of the month, the clinic is held in
the Glasshouse Hotel, Sligo. Contact Aisling
on 087-9395371.
Galway Clinic / Visits are held on the 3rd
Tuesday of the month, clinics are held in
the Menlo Park Hotel, Galway. Contact
Aisling on 087-9395371.
It is important to note that I will only
hold these clinics if there is interest
from members in the areas. Therefore, if
you would like to meet with me during any
of the clinic days please call, text or email
before the clinic date in order to arrange a
time that suits, please contact me on 087-
9395371 or email ajoyce@sbhi.ie.
MAYO INFORMATION EVENINGS
Childcare/Paediatric First Aid Course
In response to the success of the Hand Cycling Programme run last year in Kilmovee,
Co. Mayo, regular Hand Cycling will begin on the 7th March in Claremorris, Co. Mayo, where
participants can book the hand cycle for a half hour on Thursday evenings from then on by
contacting Ray McNamara from the Mayo Sports Partnership on 094 904 7023/0876973093,
Email: rmcnamara@mayococo.ie or contact Aisling FSW on 087-9395371.
Safety Ireland First Aid Course
Recently a Safety Ireland Children’s First Aid course was held in Mayo in the McWilliam Park
Hotel, Claremorris. The Safety Ireland instructor on the day, PJ Carroll provided a very informative
and interactive course which detailed how best to deal with emergency situations and it also
included CPR training for both adults and children. Eight people participated on this training
course and I would like to thank everyone who attended on the day for their participation.
A Safety Ireland Children's First Aid Course
for parents took place on Saturday the 26th
January 2013 from 10am-5pm in the
McWilliam Park Hotel, Claremorris, Co. Mayo.
This was a one-day accredited course specifically
designed to teach life-saving skills in
relation to children and incorporates the Irish
Heart Foundation Heartsaver CPR course.
Fergal Mahon enjoying the Hand Cycling Programme
in Kilmovee, Co. Mayo.
Another information evening may be
organised later in the year and details will
be sent out to all members and parents in
the area when details are confirmed.
Adult Social Evening Mayo:
Social evenings for adults will be organised
over the next few months in the Mayo and
Sligo/Leitrim areas and details will be sent
out to all adult members in the areas as
soon as they are confirmed.
Roscommon Sports Activity Days and
Summer Camps for Under 18s in 2013:
In conjunction with the Roscommon
Sports Partnership, the following activity
days and camps have been organised for
this year 2013 and will all take place in Co.
Roscommon. See below for details:
l Army Skills Day on Saturday the 16th
February 2013 in Mote Park, Co.
Roscommon from 10.30–3.30.
l Cycle Skills Day on Saturday the 9th
March 2013 in Roscommon Town at
10.30am.
l Orienteering Day on Saturday the 13th
April 2013 in Mote Park, Co.
Roscommon at 11am.
l Kayaking Fun Day on Saturday the 11th
May 2013 in Portrun, Roscommon at
11am.
l July Inclusive Summer Camp will run
from the 8th–12th of July 2013 in Fourmilehouse
Community Centre 11–1pm.
30 www.sbhi.ie

Around the Country
l August GAA CUL Camp will run from
the 6th-9th August 2013 in the Hyde,
Roscommon.
For further details or to book a place
contact Annette McGeeney, Sports
Inclusion Disability Officer, Roscommon
Sports Partnership for more information on
09066-30853/087-7661920, email:
Annette@rosactive.org or alternatively
contact Aisling on 087-9395371 or email:
ajoyce@sbhi.ie.
Mayo Sports Activity Days and Summer
Camps for 2013:
In conjunction with the Mayo Sports
Partnership, the following activity days and
summer camps have been organised for
2013. Please see below for details:
l The Saturday Sports Club for under 18s
began on the 26th January and will run
l
l
WEST (CONT’D)
every second Saturday from then on at
11am in St. Gerald’s, Castlebar, Co.
Mayo.
A Social Night for adult members with a
talk on nutrition and diet and a table
quiz will take place in the Tennis Club,
Lough Lannagh, Castlebar, on Friday the
1st March 2013 from 7pm-9pm, families
are also very welcome to attend.
Claremorris Hand Cycling will begin on
the 7th March; participants can book
the hand cycle for a half hour on
Thursday evenings from then on by
contacting Ray McNamara, details as
below.
l A “Come and Try Sports Day” for
children and young people will take
place on Saturday the 18th May 2013 in
Breaffy GAA Club, Castlebar, Co. Mayo.
l An Adults “Come and Try Day Sports
Day” will take place in Breaffy GAA
Club, Mayo, on Saturday the 15th June
2013.
l Mayo Inclusive Sports Camp for under
18s will take place from the 22nd- 26th
July 2013 in An Sportslann, Castlebar,
Co. Mayo.
For more information or to book a place on
any of the above please contact Ray
McNamara, Sports Inclusion Disability
Officer, Mayo Sports Partnership, 094-904
7023/087-6973093, email:
rmcnamara@mayococo.ie. Alternatively
contact Aisling on 087-9395371 or email:
ajoyce@sbhi.ie. n
Members and volunteers enjoying the music
at the “Crack at the Track” and the Willoughby
Brothers who performed on the day.
The Duggan Bros band are
kindly donating the funds
from the sales of their CD
"Reflections" to SBHI
Duggan Bros are a band of two brothers
called Ian and Joss Duggan from Sligo,
who were part of the five brother band
(Brotherly Love) managed by Louis
Walsh. They play a wide variety of music
from Neil Diamond and The Bee Gees to
Jo. Their new CD “Reflections” is now
available to buy. All proceeds from the
CD are being donated to Spina Bifida
Hydrocephalus Ireland.
The CD is available from The Record
Room in Sligo or from the band at their
gigs. If you do not live in the Sligo area
they can post it to you, email:
jossduggan@yahoo.ie or call
087-2622540 or follow them on
Facebook at Duggan Bros.
“Crack at the Track” Adult Social Event
As an Adult Social Event, I organised that a group of adults from Mayo would attend the
“Crack at the Track” four-hour concert in the Ballinrobe racecourse, Co. Mayo, on the 19th
August. In total, 13 people attended, including six adult members and two parents, IWA
driver and escort, nurse Donna Boyle, and volunteer Catherine Durcan, and I attended.
I would like to thank Donna and Catherine for all their help during the day. I would also like
to thank IWA in Belmullet for providing bus transport and a driver and escort for the day.
It was a great day and everyone who attended has said how much they really enjoyed the
day. The day started out very wet but thankfully it cleared up and was a very enjoyable
event for all concerned.
The four-hour concert included over ten country and western acts including Nathan Carter,
Mike Denver, the Willoughby Brothers and many more and was very well organised and facilitated
by the staff of Midwest radio. Thanks to Midwest staff for a very well organised day.
Many thanks especially to all the members who attended and made it such a great day out!!
Aisling Joyce,
Family Support Worker
(West and Donegal).
www.sbhi.ie 31

Around the Country
CORK / KERRY
Hi all, I have arranged the first meetings of
the year and would love to see as many of
you as possible. I have lots of new plans
and hopes for the year to come and I
would love to hear your ideas too! Please
come along for lots of fun, chats, coffees
and PLANS!!!!
CORK: 2nd Friday of every month in the
Rochestown Park Hotel.
11am Coffee morning.
2pm Clinic.
5pm Young adults group.
Next one will be Friday 8th Feb 2013.
___________________________________
KERRY: 2nd Wednesday of the month in
the Manor West Hotel.
11am Coffee morning.
Next one will be Wednesday 13th Feb 2013.
2pm Clinic
5pm Young adults group.
___________________________________
The Valentines Ball:
15th February
in The Clarion Hotel, Cork city.
If you are interested in coming along please
contact Deirdre Gallagher 086-8194791 or
Judy Long 087-6527175.
___________________________________
Any members over 18 who are interested in
getting involved in the young adult support
group, there is a meeting taking place on
Monday Feb 18th. If you are interested
please contact Deirdre Gallagher, Family
Support worker, Cork/Kerry area at
086-8194791.
DEIRDRE GALLAGHER, 086 8194791,
dgallagher@sbhi.ie, www.sbhi.ie.
Spina Bifida Hydrocephalus Ireland
together with the Spina Bifida
Hydrocephalus Association in Cork held a
very successful Continence Day in the
Ambassador Hotel last November.
A number of speakers attended the
conference including Consultant Paediatric
Urologist Mr Imran Mushtaq from Great
Ormond Street Hospital in London,
Consultant Urologist Mr Ciaran Brady from
the Mercy Hospital in Cork, Francis Halligan
retired Clinical Nurse Specialist, Marie
McGrogan Persiteen advisor and Bernie
Kerry woundcare specialist. This is what one
parent had to say about the day:
“Management of continence is a subject that
concerns all people with spina bifida. As
parents we worry that our children may suffer
ill health due to kidney damage. I was very
keen to attend the continence information
day held in Cork on Nov. 24th to become more
informed on this subject. The speakers, who
included a consultant paediatric urologist
based at Great Ormond Street Hospital,
London, gave detailed information in their
presentations. In addition they were very
approachable and willing to address our
many queries. However, it was worrying to
hear that many in the audience had difficulties
accessing urological services
throughout the country. It is clear from the
general discussion that there is a shortage of
urological services for adults and children
with spina bifida in all parts of Ireland. I was
glad to hear that SBHI are seeking to address
this with the HSE. Overall the conference was
very informative and well worth attending”.
(Anna Buckley, Cork).
____________________________________
Spina Bifida Hydrocephalus Ireland
together with the Spina Bifida
Hydrocephalus Association in Cork also
held a Hydrocephalus Focus evening in
October in conjunction with Enable
Ireland where psychologist Leanna
Fogarty presented.
“This was a very informative evening and well
worth going to. I have a 4 year old son Cian
with spina bifida & hydrocephalus and I find
the hydrocephalus can be a hidden part of the
disability at times as it’s not visual to the eye
like a physical disability. This condition can
affect so many aspects of a child’s life i.e.
sensory, emotions, learning etc and learning
all about this condition is an experience for us
all and from that evening we realised that yes,
there is a lot that we can do to help maximise
our son’s potential i.e. the timing of learning
skill chart, this gave a breakdown of what you
should be emphasising with your child at
different age levels to help them focus more
on what they should be working on i. e. 3-10
Months Attention & Awareness & 2-4 years
Language Acquisition and this goes on up to
16 years. Living with this condition can be
difficult at times but this talk gave explanations
of how and why your child does certain
things which you may not have understood
before. We all want the very best for our
children and want them to lead independent
& happy lives and this talk was a stepping
stone in the right direction.” (Valerie Hennessy,
Cork).
“I attended the above meeting in Cork back in
October with my husband Colin. This was the
first time we attended anything related to our
son's condition. Christian is now 7 years old. I
was 20 weeks pregnant when I was told that
the baby I was carrying had hydrocephalus.
Neither my husband nor I had ever heard of
this condition and we did what most people
do in this situation, we tried to inform
ourselves via the Internet. This turned out not
to be our smartest idea as we encountered
some terrible stories and a lot of mis-information
so when we were offered the opportunity
to learn more about hydrocephalus in a
local setting we were delighted. Christian is
very fortunate in that he receives amazing
support from his school, St Columbas B.N.S. in
Douglas ,Cork, and his class teacher also
attended the evening.
We were welcomed by Deirdre and introduced
to some other members of SBHI's Munster
branch. Leanna Fogarty, Senior Clinical
Psychologist, then took us through her indepth
presentation on hydrocephalus. I was
particularly interested in the behavioural
aspects as this is an area that we have
struggled to gain information about. I
thoroughly enjoyed her presentation and very
much appreciated the informal questions and
answers format as it allowed you to ask your
question whilst Leanna was still on that
particular point. I would also like to applaud
Leanna on giving up her evening to help us
and all the other parents there. As a parent of
a child with hydrocephalus I have experienced
what can only be described as an appalling
lack of information from all the medical
professionals we have encountered and from
speaking to other parents, some at this event, I
know that this is a mutual concern therefore it
was so refreshing to finally meet someone
who presented the information in a personal
and practical manner.
I encountered Deirdre Gallagher as recently as
last September during a clinic at the C.U.H.
and in this short time I have finally begun to
lose the feeling of isolation that I have experienced
since that day during my 20th week of
pregnancy when I heard the word hydrocephalus
for the first time. I would like to
Thank her and SBHI for giving hydrocephalus
a voice and for giving parents like me opportunities
to openly discuss our children’s
"hidden condition" with others in similar
situations. I look forward to the next one!
Thanks again Deirdre, you've been a great
support.” (Susan Ahern- Daly).
Together with the Spina Bifida and
Hydrocephalus Ireland association I am
planning a brand new year ahead with lots
more to come. If you have any ideas, plans,
hopes or dreams for 2013 please contact
me and we can work on pushing things
forward together!
– Deirdre Gallagher 086-8194791.
32 www.sbhi.ie

Around the Country
SOUTH EAST
During October two of our members
Bernadette Flood and Colin Byrne along with
our Family Support Worker, Judy Long, went
on South East Radio to advertise the World
Day of Spina Bifida and Hydrocephalus.
They also spoke about the difficulties in life
with the condition and how it affects them
everyday.
They also spoke about our Torc pin day in
Wexford town where our members along
with their families took to the streets to sell
our Torc pins and wrist-bands helping to
promote Spina Bifida and Hydrocephalus.
Although the day was cold an enjoyable
day was had speaking to the members of
the public about the condition and over a
thousand euro was gathered on the day.
The Wexford Branch also held their
Christmas party in Sean Og’s Hotel,
Kilmuckridge, on the 1st of December 2012.
A great evening was had by all with a full
attendance of members. They all enjoyed a
4-course meal followed by dancing and
singing with DJ John Furlong. Smiles galore
was evident on all faces with the arrival of
Mr and Mrs Claus who made the long
journey from the North Pole to deliver
presents to all the children. They stayed on
for a while and had a sing song with all the
members with many members giving their
versions of many Christmas songs. Sharon
Foley, Colin Byrne, Caoimhe Collins,
Charlene Kelly and Amy Kinsella among
others sang for Santa.
We had many new members in attendance
along with our Family Support Worker, Judy
Long, and her mammy. After Mr and Mrs
Claus left, children danced and played with
their new presents and were all tired and
ready for bed by the time the night was out.
We would also like to thank Mrs Nolan,
Saoirse Nolan’s granny, for making and
donating beautiful Christmas cards to the
branch for us to sell. A very generous
amount of money was made.
We finally wish all our members a Happy
New Year and look forward to the Wexford
Branch adventures of 2013. n
South East Clinics:
Tipperary: Clonmel Park Hotel &
Ballykisteen House Hotel, Tipperary town.
Waterford: Tower Hotel.
Wexford: Riverside Park Hotel, Enniscorthy,
Ashdown Park Hotel, Gorey.
Carlow: Seven Oaks Hotel, Dolmen Hotel.
Kilkenny: SBHI Office, 5a Upper New
Street, Kilkenny.
Contact Judy to arrange appointment
087-6527175.
Wexford area: Young adult support
group held on the first Thursday of every
month in the Riverside Park Hotel,
Enniscorthy, with members attending
ageing in range from 22 to 28. We meet at
5pm until 7pm and have dinner. All new
members in the Enniscorthy area are
welcome to come along and join us.
Parent/toddler support group in the
Riverside Park Hotel, Enniscorthy, second
Thursday of each month from 11am-1pm.
All new parents welcome for friendly
informal chat over tea and a scone. Contact
Judy for more information 087-6527175.
Waterford: Calling all members age 18+ in
the Waterford to contact Judy with regard
to setting up a young adult support group
in the area.
UPCOMING EVENTS
Integrated wheelchair dance classes
commencing in Waterford in April. Anyone
interested in coming along please call
Judy for more information 087-6527175.
Coffee morning in Tipperary: Parents
interested in attending can contact Judy
087-6527175. n
CLOCKWISE FROM TOP LEFT:
Caoimhe and Niamh Flood.
Bernadette Flood and her
Godchild Evan.
Group of Wexford Branch
members with Mr and
Mrs Claus.
Tracey Kehoe.
Members of Wexford Branch.
Our 2 youngest members
Annie Murphy and Calum White
with Mr and Mrs Claus.
Members of Wexford Branch.
www.sbhi.ie 33

Around the Country
MIDLANDS
SPINA BIFIDA & HYDROCEPHALUS
STUDY DAY 20TH OCTOBER 2012,
MULLINGAR PARK HOTEL
The study day was attended by a total of 12
SBHI members from the Midlands Region and
Professionals from the HSE Early Intervention
Team and a PHN from HSE Offaly, along with
2 sign language interpreters.
Presentations were made by Frances Halligan,
Teresa Ronan, Marie McGrogan, Sarah
Jacobsen and Anna-Louise Coonan.
Day opened at 10.00 am with Sarah Jacobsen
welcoming attendees.
Frances Halligan, SBHI Continence Nurse
Advisor, followed with 60 minute presentation
which outlined Spina Bifida and the
implications of Myelomeningocele and
Meningocele on the bladder and the corresponding
bladder management needs.
Frances covered the management of the
bladder from birth through to adulthood.
This was followed by 50 minute presentation
by Teresa Ronan, Bbraun Continence Nurse,
who spoke about bladder management with
specific reference to catheterisation including
Self-Catheterisation, Superpubic
Catheterisation and Intermittent
Catheterisation. Teresa also made particular
reference to best practice catheterisation use
to avoid UTI's and kidney damage.
Tea & Coffee were served at 11.40am.
Frances Halligan presented a 60 minute
overview of the bowel and bowel
management. She also spoke of the
relationship between the bladder and the
bowel and the implications and importance
of best practice management of both.
Following this, Marie McGrogan, Coloplast,
presented a 30 minute talk on Peristeen and
its use in best practice bowel management.
There was opportunity throughout all
presentations for participation from the floor
in the form of questions and answers. At the
end of the morning sessions there was also
an opportunity for private one-to-one
sessions with all presenters.
Lunch was served at 1.30pm.
The afternoon session began at 2.15pm with
Sarah Jacobsen presenting an 80 minute talk
on Hydrocephalus and best practice
management. The presentation spoke about
what Hydrocephalus is, Hydrocephalus
management from a medical perspective and
Hydrocephalus management from a social
perspective.
This was followed by Anna-Louise Coonan,
SBHI Kildare member who presented for 30
minutes and spoke about her personal
experiences of managing Hydrocephalus
from primary school through to adulthood.
There were opportunities throughout the
afternoon presentations for participation
from the floor in the form of questions and
answers. At the end of the afternoon sessions
there was also an opportunity for private
one-to-one sessions with all presenters.
Study day concluded at 4.30pm.
_____________________________________
MIDLANDS ADULTS VALENTINE
RESPITE BREAK 15 – 17 FEBRUARY
Clarion Hotel, Liffey Valley, Dublin
Friday 15th February
5.00pm
8.30pm
Check into Hotel
Valentine’s Party with
Finger Food & DJ
Saturday 16th February
7.30am to 10.30am Breakfast
10.30 to 5.00pm Free Day (lunch not
included)
Options: Liffey Valley Shopping Centre,
Vue Cinema Liffey Valley,
Leisure Centre at Clarion Hotel,
8.30pm Dinner at Kudos Bar.
Sunday 17th February
7.30am to 11.00am Breakfast & Check-out.
11.30pm Drop-off to Heuston & Connolly
Stations.
Cost per person for weekend is €30. This
includes Accommodation & Breakfast for 2
nights, Valentines Party, Cinema on Saturday
and Dinner on Saturday Night. Please note:
Lunch on Saturday is not included.
For further information and to book your
place please contact Sarah Jacobsen on
085-7119062 or sjacobsen@sbhi.ie or
www.facebook.com/sarah.jacobsenfswsbhi
_____________________________________
MIDLANDS PEER SUPPORT FOCUS
GROUP 21 FEBRUARY
7.00pm Central Hotel, Tullamore
Following on from the Peer Support Working
Group meetings which have been taking
place in the NRC with our older group of
members, who are looking to establish a peer
support network within SBHI, the working
group has now reached its consultation
stages where they would like to find out if
this service would be welcomed around the
country. The working group, which consists
of 4 adult members: Gerry Maguire, Ann
Richards, Frank Larkin and Christy O'Neill,
have been meeting since early October 2012
and discussing what they feel SBHI could do
to be more inclusive of its adult members.
This group is facilitated by an external facilitator,
Dee Hennessy, and also has support
from Louise McCann, Support Officer from
DFI.
Each region focus group will be facilitated by
one of our members who will have received
training in facilitating focus groups, along with
a support facilitator from either DFI or SBHI.
The FSW in that area will attend the focus
groups solely as a support person but will have
no specific role in the focus group.
Each region group meeting will have a
maximum of 12 participants and will last
approximately 90 minutes.
_____________________________________
MIDLANDS BRANCH START-UP
MEETING 25 MARCH 7.00pm
Venue to be Confirmed
There has been a lot of interest from members
over the last 18 months in the Midlands Region
in relation to a Midlands Branch. As you are
aware there is currently no branch in our area.
The Branch Services provide a vital link
between members, the National Resource
Centre and the Board of Directors. Many of the
branches organise and run very valuable
programmes such as computer training,
occupational and physiotherapy services and
activity based events.
A branch meeting is also an important asset for
the association where parents gather together
to exchange support and guidance to each
other, where members can bring about change
by lobbying issues with their committee and
where social networking is an essential part of
these meetings.
This meeting will take place on 25 March to
gauge interest and to outline the role of the
branch and how it may be of support to you
and your family. The meeting will be facilitated
by George Kennedy, CEO, and a member of the
SBHI Board of Directors. All Midlands members
are welcome to attend.
_____________________________________
SBHI FAMILY WEEKEND 26 – 28 APRIL
Kerdiffstown House, Kildare
The family weekend this year will take place
from 26 to 28 April. This is a fantastic opportunity
for families to get together in a relaxed
environment with other like-minded families
who can share experiences. There will be
opportunities for parents to receive information
and/or training in specific areas as well
as ample opportunity for relaxation activities
and social events for all parents. There will be
dedicated, age-appropriate activities for all
children including drama, art, sport and sibling
workshops. The emphasis for this weekend is
on Fun for all.
Families from the Midlands with children
under 18 are very welcome to attend this
weekend. Please note that this weekend books
up very fast and preference is given to families
who have not attended before.
_____________________________________
Please contact Sarah Jacobsen for further
information on any of the above and to
register your interest on 085-7119062 or
sjacobsen@sbhi.ie or
www.facebook.com/sarah.jacobsenfswsbhi
34 www.sbhi.ie

Ladies we want you!!!
Yes, we would like your help to raise much needed funds and have fun in the
process. Why not get a group of your friends together and walk or run…
The Flora Women's
Mini Marathon 2013
Monday 3rd June @ 2 pm
IMPORTANT NOTICE:
OPENING DATE FOR ENTRIES WILL BE WEDNESDAY 20TH FEBRUARY 2013.
You can enter online @ http://www.florawomensminimarathon.ie / OR by using the
entry forms that appear in the Evening Herald every Wednesday and Saturday from
that date.
Perhaps you could use our Ability Run on May 4th (see back cover) as a warm up!!!!
!
SPINA BIFIDA
HYDROCEPHALUS
IRELAND
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THE ABILITY RUN 2013
Walk, Wheel or Run in aid of
Spina Bifida Hydrocephalus Ireland
4th May 2013 in the Phoenix Park, Dublin
Whatever your ability, join us for our fundraiser in the
Phoenix Park on Saturday, 4th of May 2013
10km run/walk/wheelRegistration 8am10:30am sharp.
11am start (prizes available for 1st/2nd/3rd -male, female, disability).
online registration, registration on the day
5km family and disability friendlyRegistration 8am
11:15am sharp. 11:45am start
online registration/registration on the day
family rate (2 adults/2 children -
family rate (2 adults/2 children -
Corporate rate available for groups (15+ participants)
This event will use Timing Chips so it will be great for anyone training for a 10km,
half marathon, marathon or triathlon event!
For more information please go to: www.sbhi.ie/AbilityRun.html
or register online via: www.runireland.com