frontline97-digital-3

DUNDALK FC — FRONTLINE IN PRINT — HEART SURGERY
FRONTLINE
Volume 97 ● Winter 2015
THE IRISH VOICE FOR INTELLECTUAL DISABILITY
FAMILIES

2
FRONTLINE CONTENTSVolume 97 | Winter 2015
10 SUPPORT FOR FAMILIES:
BUILDING ON SUCCESS
Roy McConkey
12 THE ECONOMIC COSTS OF
DISABILITY FOR FAMILIES
John Cullinan
14 RESPITE IS NOT SOME
MYTHICAL UNICORN
Emma Dunne
16 JAMES’ STORY: A PARENT’S
PERSPECTIVE
Vicki Casserly
17 PARENTS AND
PROFESSIONALS: THE FARMER
AND THE COWMAN?
Máiríde Woods
18 CREATING COMMUNITY
AND ENJOYING LIFE: THE
STORY OF FIONNATHAN
PRODUCTIONS
Jonathan and Fionn Angus
21 A BITTER SWEET ENDING:
AGAINST ALL THE ODDS
Marcella O’Sullivan
25 OLDER PEOPLE WITH A
LEARNING DISABILITY: ARE
THERE FAMILY-FRIENDLY
OPTIONS IN CARE DELIVERY?
Evan Yacoub
FEATURE: FAMILIES
9 KEITH WARD & DUNDALK FC
ARE WINNERS!
Mary Moran
27 DOWN SYNDROME AND
HEART SURGERY
Freddie Wood
28 FRONTLINE: REFLECTION ON
THE HARD-COPY YEARS
Colin Griffiths
29 FRONTLINE: LOOKING BACK
Mary de Paor
29 PEN & PALETTE: BOOK
REVIEW
Reviewed by Jean Spain
3 Editorial
4 Inclusion Ireland News
Cormac Cahill
NEWS
5 CHANGING PLACES IRELAND
Cormac Cahill
7 FAMILIES BRIDGING THE GAP
7 Letter to the Editor
8 OPEN TRAINING COLLEGE
GRADUATIONS
8 SENSATIONAL SWIMMERS
MAIN ARTICLES REGULARS
FRONTLINE Winter 2015

3FRONTLINE Winter 2015
CREDITS
Editor
Stephen Kealy
Editorial Board
Mary de Paor
Owen Doody
Mitchel Fleming
Siobhán Kane
Siobhán MacCobb
Michael McKeon
Brian Manning
Kathy O’Grady
Darshini Ramasubbu
Judy Ryan
Jean Spain
Michael Teehan
Angelina Veiga
Published by
Frontline Magazine Ltd.
Design and Production
Guilder Design,
niall@guilderdesign.com
Printed by
Opus Print
ISSN 0791–1270
Published Quarterly
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to publish the magazine Frontline.
Copyright resides with the individual
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any article must be obtained in writing
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Views expressed in Frontline are those
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Reg. Chy No: 18745
F R O M T H E E D I T O R
PEOPLE, NOT OBJECTS
Family is an essential fabric of who we are—understandings forged
in so many conscious and unconscious interactions—an environment
where we are engaged and given opportunities to experience
warmth and tenderness—where children are challenged and they, in
turn, challenge. Trust is burnished by active reciprocal engagement
and its calibration reflects the many-layered nuances of family life.
Such simple understandings as respect, warmth, looking out for
one another, sharing, expressions of concern; while not taken for
granted, these are recognised as vitally important to the human
condition, and their absence is equally recognisable.
Frontline, over the last twenty-five years, has published good national and local intellectual
disability news stories. Also published were many articles and commentaries on the difference that
is made by active engagement with people with an intellectual disability. Many people’s stories
over those years have demonstrated the qualitative difference that is made when activities of daily
living are personalised—reflecting trust, respect and forging relationships with people, as opposed
to treating them as objects of reference.
A core objective of Frontline has been to place the person with an intellectual disability at
the forefront as people—people with rights, feelings, the need for warmth, affection, security,
fun, to be loved and cared for. Not everyone is suited to a caring role, but there is an enormous
responsibility on those charged with the care of others, regardless of whether they have an
intellectual disability or not, to engage respectfully, to foster relationship—to attune themselves to
those who are not in a position to communicate their needs. A punitive approach obliterates any
possibility of meaningful relationship.
When families, for whatever reason, entrust the care of their son or daughter to another person
or agency, whether statutory or voluntary, it is on the basis of trust and in the expectation that any
engagement with their family member will be respectful and personal.
Commentators have used very strong language to describe what was shown to the nation on
the recent Primetime programme on Áras Attracta. There is, of course, the danger that many of
the good things that happen on behalf of people with an intellectual disability throughout the
country could be lost. However, given all of the horrible observed behaviour of persons employed
in the caring role, the most appalling element for us was the non-recognition of the person.
Apologists have talked about the lack of staffing and underfunding. No amount of staffing or
funding can be a substitute for treating people respectfully and engaging with the people with
whom staff are paid to interact.
In this issue, Paul’s sister Marcella O’Sullivan tells his story, describing how his challenging
behaviours were cited. It is likely some of the behaviour seen on the Primetime programme could
have been described as ‘challenging’. But no one needs to be an expert to understand than the
lack of engagement by staff members was a crucial component in such behaviour. How had the
need to use one’s mobile phone, or to smoke a cigarette, become more important than doing the
job for which they were employed? HIQA visitations do provide some reassurance, but what is
crucially needed is for people’s lives to become more engaged and meaningful. Very often training
fails because of a lack of follow-up and implementation. This requires that those in leadership
positions must be courageous, proactive and constantly aware that the core component of active
engagement and relationships are based on respect. However, all involved in caring roles must
own their own behaviour and be accountable for that behaviour.
.
Stephen Kealy
Fionn Angus
Jonathan Angus
Cormac Cahill
Vicki Casserly
John Cullinan
Mary de Paor
Emma Dunne
Colin Griffiths
Roy McConkey
Mary Moran
Marcella O’Sullivan
Jean Spain
Freddie Wood
Máiríde Woods
Contributors to this issue:
The Board of Frontline are seeking expressions of interest in the position of Editor.
The position is voluntary and for a three year period. For further information,
please contact: editor@frontline-ireland.net
Cover Pic: Marcella
O’Sullivan & Paul
O’Sullivan

4 FRONTLINE Winter 2015
I N C L U S I O N
International Day of Persons with Disabilities
Inclusion Ireland and Down Syndrome Ireland marked the
International Day of Persons with Disabilities in style by
hosting two performances of the Blue Teapot production
of Sanctuary, to packed audiences at Dublin’s Liberty Hall
Theatre on 3 December 2014. The audience was treated
to a double bill: a presentation by the Inclusion Ireland
self-advocacy group, followed by the Sanctuary play. The
powerful presentation was: ‘Change the law on relationships
for people with disabilities – we have a right to have
intimate relationships.’
The Inclusion Ireland self-advocacy subcommittee has nine
members.
Brian Hayes spoke first and said; ‘We are here today to
celebrate the international day for people with disabilities.
Thank you so much for coming today and helping us to
celebrate.
We hope today will bring some change to people’s lives so
people have more confidence in themselves to demand equal
rights and the freedom of having a relationship of their choice.
The law in Ireland today says that people with intellectual
disabilities do not have the same rights to enjoy intimate
relationship as everyone else in Ireland. Today we want to tell
the government that this in not right and we want this law
changed.’
Marie Wolfe, a member of the self-advocacy committee and
a lifelong activist for the rights of people with disabilities,
spoke on the day saying ‘Let us live the way we want. We
have desires and wants like anyone else. Enough talking we
want action so change the law. We are asking for the law to be
changed for a long time now. Enough talking. We want action
to change the law.’
Sanctuary highlights how Section 5 of the Sexual Offences
Act 1993 dramatically impacts on the intimate lives of
people with disabilities. The cast of sanctuary are actors
with intellectual disabilities, and they raised many poignant
points during their performance. They questioned the
power dynamic that exists between support staff and people
who use disability services. Though humour and poignant
remarks, the play demonstrates that people with disabilities
are denied the basic human right of privacy in their daily
life.
The current law, the key topic of the day, puts people with
intellectual disabilities in a vulnerable and powerless position
which often results in poor sex education and training for
adults with disabilities who are subjected to policies within
disability services that are far from rights-based. Marie Wolfe
described it perfectly in Liberty Hall when she said ‘Give us
the right sex education and training. People who use services
need sex education and training. We need good information so
we can make our own decisions. We feel service protect us too
much. The law makes services afraid to give us sex education
and respect our rights, so they hold people back.’
Phil Davy, chairperson of the Connect People Network
who have made two submissions on how the law should be
changed, asked for the Department of Justice to please listen
and act on what they are saying.
INCLUSION IRELAND CONTACT DETAILS
Cormac Cahill,
Communications & Information Officer
cormac@inclusionireland.ie
(01) 8559891 / 086-837 3394
Inclusion Ireland
Unit C2, The Steelworks,
Foley Street, Dublin 1.
Tel: (01) 8559891
Fax: (01) 8559904
Email: info@inclusionireland.ie
Facebook: www.facebook.com/pages/Inclusion-
Ireland/144471862139?fref=ts
Twitter: @InclusionIre
INCLUSION
IRELAND NEWS
Brian Hayes - Chairperson, Margaret Keogh - Vice Chair,
Stephen McDermott - Secretary and Board member, Martin
Rowan - Vice-Secretary and Board member, Adrian Noonan
– PRO, Dermot Lowndes - Vice PRO, Marie Wolfe - Member,
Phil Davy - Board member, and Bernard Doyle - Member.
Brian Hayes speaking at the presentation

CHANGING PLACES IRELAND
Without Changing Places toilets, the person with disabilities is put
at risk, and families are forced to risk their own health and safety by
changing their daughter or son on a toilet floor. This is dangerous,
unhygienic and undignified. It is now accepted and expected that
everyone has a right to live in the community, to move around within
it and access all its facilities. (Changing Places UK website www.
changing-places.org)

Changing Places toilets are different to standard disabled toilets;
they include extra features such as hoists and changing benches,
have enough space and provide a safe and clean environment for
the user.
The Changing Places campaign in the UK has helped to
transform the lives of persons with disabilities and their families
with the introduction of over 750 fully accessible toilet facilities
across the United Kingdom (including Northern Ireland) since
its inception in 2007. The UK Changing Places consortium
works together to support the rights of people with profound
and multiple learning disabilities to access their community.
Consortium members include the Centre for Accessible
Environment, PAMIS, Mencap, Nottingham City Council,
Dumfries & Galloway Council and the Scottish government. A
Changing Places campaign has also been launched in Australia.
Sadly, the Republic of Ireland does not currently have any
registered Changing Places facilities.
Ann Healy lives in Blessington, Co. Wicklow, and is parent
of Ailis, an adult daughter with a disability. Ann explains that
standard disabled toilets across Ireland do not currently provide
the necessary supports that are suitable for her daughter when
she is out socialising in a public place.
‘My daughter, Ailis, like all young women her age, loves
nothing better than to go shopping, have a meal and take in a
movie. Unfortunately, she can only choose to do one of these
things at a time because normal disabled toilet facilities do not
cater for her needs—she needs a hoist to use the toilet, so we can
only go out for a few hours at a time.’
However, all this could soon be a thing of the past. Inclusion
Ireland is hoping to emulate the success of the UK campaign by
facilitating a Changing Places Ireland website in early 2015.
The Changing Places Ireland website will be fully map-based
and will provide users with information on where toilets are,
how they can be accessed and when the facilities are available.
Inclusion Ireland has established a Changing Places Ireland
working group. The group includes Inclusion Ireland staff
members Cormac Cahill and Fiona Duignan, Director Lorraine
Dempsey, Ann Healy (parent) and Vicki Casserly (South Dublin
County Councillor). The working group held its first meetings
in November and December 2014. It will focus on ensuring that
Changing Places facilities in Ireland become the norm, rather
than the exception, in the years ahead.
Ms Healy believes that their campaign will be a life-changer
for many families. ‘A few years ago, when I came across a website
www.changing-places.org.uk – which lists more than 750 toilet
facilities in the UK which have both a hoist and a changing table,
I realised that life didn’t have to be like that,’ she said. ‘Changing
Places toilets also cater for people who currently have to suffer
the indignity of having to be changed on toilet floors because
they need an adult height-adjustable changing bench.’
John Morgan, a wheelchair user from Dundalk, believes that a
lack of truly accessible toilets can prevent people with a disability
having an active social life and the current accessible toilets in
his home town need some urgent attention: ‘The town hall in
Dundalk went through major renovations during the Celtic Tiger
years and it has three so-called accessible toilets, but they are
totally inaccessible,’ he said. ‘I raised this matter with the town
clerk, as going to the toilet is the most basic need for everyone—
whether they have a disability or not. I have explained to him
that if I can’t go to the toilet, I can’t go to a show in the town
hall. It’s as simple as that.’
The new Changing Places Ireland website is a work-in-
progress, but once it is launched it will be fully map-based and
compatible with tablets and smart phones, so persons with
disabilities, parents and carers can access the information when
they are away from their home computer or laptop. A number of
facilities/premises that do not meet all the criteria, but still want
to become involved in the initiative, will be included in a section
on step-down facilities. They will be encouraged to take the extra
actions necessary to ensure that they have the full facilities in the
future.
The Federation of Voluntary Bodies has also been heavily
involved in the new campaign by asking their members to
publicise their facilities for the purpose of the website. Inclusion
Ireland has also been in touch with Mencap (who are one of
the main partners in the Changing Places UK, and have been
Cormac Cahill, Communications & Information Officer, Inclusion Ireland makes the case for the Changing Places
campaign.
Ailis Healy & her mother Ann

the driving force behind Changing Places facilities) to act as a
sounding board for the campaign in this country.
Inclusion Ireland and the Changing Places Ireland working
group believe that the lack of such quality and accessible
facilities across Ireland is a societal issue and not just a disability
issue.
They are looking to create a Changing Places Ireland alliance
of organisations across the spectrum that they believe will drive
this campaign forward and create more awareness in the public
of the pressing need for these facilities.
Ms Healy hopes that the Changing Places Ireland campaign
will ensure that top-class toilet facilities will be installed
many more public places across Ireland, so that persons with
disabilities can enjoy an active social life. ‘The aim of the
campaign is to ensure that Changing Places facilities will
become the norm in places that are used by the public, such
as shopping centres, airports, train and bus stations, visitor
centres, galleries and hospitals etc.—so that people like Ailis
can enjoy a fuller life,’ she said. ‘I was delighted when I raised
it with Inclusion Ireland and they agreed to develop their own
campaign to highlight the pressing need for these facilities here
in Ireland. The Federation of Voluntary Bodies have also been
very supportive and some member organisations are making
their facilities available on the website (including KARE Local
Services in Newbridge, Naas and Blessington; the Delta Centre
in Carlow; and Deans Gate Day Service in Kilkenny).’ Ms Healy
added: ‘There is also a new changing place in Mary Immaculate
College in Limerick and one planned for the National Gallery
in Dublin. Hopefully, there may be others around the country
which will become known when the new Changing Place
Ireland website gets off the ground in early 2015.’
Ms Healy calls on people from around Ireland to get behind
the campaign and to raise awareness of Changing Places Ireland
at local level. ‘People who are interested in helping to promote
the campaign can help by raising awareness locally with
county management, local politicians and planners to ensure
that new public buildings or those that are being refurbished
will include a changing place in their plans.’ Changing
Places Ireland has launched a Facebook page (www.facebook.
com/ChangingPlacesIreland) and parents, individuals and
organisations are encouraged to share and like posts and get
involved in the campaign.
CHANGING PLACES CRITERIA
■ Height adjustable, adult sized changing bench
■ Ceiling track hoist system
■ Adequate space for the disabled person and up to two
assistants
■ Centrally located toilet with space both sides for assistants
■ Privacy screen
■ Wide paper roll
■ Large waste disposal bin
■ Washbasin, preferably height adjustable
THE INFORMATION REQUIRED
■ Name of building
■ Address
■ Telephone number
■ Website
■ Facility Details
■ Type of venue
■ How to gain access
■ Opening hours
■ Changing Bench
■ Hoist
■ Toilet
■ Who can use the toilet?
(Readers can contact Cormac regarding the Changing Places
campaign on cormac@inclusionireland.ie or (01) 8559891.)
I N C L U S I O N

T H E R A P I E S /
L E T T E R
INCLUSION IRELAND RECENTLY published a working
paper: ‘The Case of Speech and Language Therapy’ authored
by Pauline Conroy. The key findings of this report were
that there is not a functioning, public speech and language
therapy service in Ireland and that access to a service can
depend on where you live.
Another of the key findings, which should come as no
surprise, was the resilience, hard work and creativity of
families and support groups. While acknowledging that
the Health Service Executive (HSE) should be funding these
services, many parents have taken their own action to
ensure their child has a service.
Official statistics noted that almost 3000 children were
waiting more than 12 months for speech and language
therapy treatment. Conroy’s report contained the stories of
children who had been waiting years for this vital therapy.
In the report, Maria explained how her daughter, ‘a child
of austerity’, had only accessed a handful of speech therapy
sessions over a seven-year period.
In many areas of the country parents are coming together
to provide what Conroy terms ‘associative parent provision’.
Through family contributions and fundraising, children are
able to access an appropriate speech and language therapy
service at an affordable price. While fundraising to provide
services is not desirable, the determination of families
to provide a service in a vacuum created by the HSE is
admirable.
In 2007, thanks to the hard work and dedication of a
small group of parents, Clare Crusaders established a clinic
to provide therapy services to children with a disability.
Clare Crusaders is a community response to the lack of
publicly available services. At present, this family-led
charity provides occupational therapy, speech therapy and
physiotherapy to 350 children with a disability for free.
The cost of €250,000 per annum to run the service is met
through community fundraising.
The effectiveness of early intervention is not lost on
the families associated with the Kildare Down Syndrome
branch. Conroy notes that through a combination of
family contributions and fundraising, children can access
a small, weekly playgroup. Children learn many of the
skills required for preschool through play. The children
are brought out from the group for individual sessions of
speech therapy. While this is happening, parent can meet
together over coffee, and there are also regular lectures and
talks.
Many local family support groups such as Laois Offaly
Families for Autism assist their family members to access
speech therapy privately via a subsidy. In a recent survey,
25% of children in Laois and Offaly had not seen a speech
and language therapist for more than one year. Again, a
family-led response is making speech therapy available to
children.
Recent media reports on the lack of an effective speech
therapy service have inspired one County Louth man to
establish a local service. The aim is to provide an affordable
speech therapy service for young people with autism that
will make a difference in their lives. The founder is a father
of two boys with autism.
It is shameful that families and support groups have to
raise funds to access a speech and language therapy service
for their children. These are basic services that should
be publicly available. However, families in many parts of
Ireland have shown their determination and creativity
by establishing their own cost-effective services. Families
realise the importance of early intervention, especially in
speech therapy, and many of them are bridging the gaps in
HSE services to give their child a better chance.
LETTER TO THE EDITOR
Dear Frontline editor,
As many people were, I was very concerned by the allegations
that arose from the recent RTÉ investigative programme. I was
however also impressed by the calls from the family of one
resident, Mary Garvan, for the avoidance of trial by media and
in effect for due process.
Olivia O Leary in a Drivetime broadcast entitled ‘A Sacred
Trust’, best summed up my experience and sentiments on the
issue. For many years my sister, who has Down Syndrome
has been in the care of what is now known as the Muiriosa
Foundation. She lives in a community house and works in
an enterprise supported by Muiríosa. I know that my sister
is surrounded by staff at all levels who are dedicated to her
welfare and well being, and who at all times show exemplary
dedication and commitment. I am confident that this is the
case in the vast majority of situations. This of course makes
the situation outlined by the RTÉ investigation all the more
reprehensible: a breach of a sacred trust. My fear is that
the misbehaviour of a few can tarnish the good work and
professionalism of so many. We must not allow this to happen.
Patrick Larkin
Fosterstown,
Trim, Co Meath
FAMILIES BRIDGING THE GAP

O P E N T R A I N I N G /
C O P E F O U N D AT I O N
OPEN TRAINING COLLEGE
GRADUATIONS
CONGRATULATIONS TO ALL the recent graduates of the Open
Training College who attended the Conferring of Awards ceremony on
Saturday, 15 November at the RDS Concert Hall in Dublin. Almost one
hundred graduates achieved third-level awards in the areas of Social
Care and Management in the disability and wider non-profit sectors.
Special mention goes to Aenid Doherty (The Gerry Clarke Award),
Paul Foster (Social Care Ireland Award for Academic Excellence), and
Peter Shiels (The Wheel Management Award for Academic Excellence)
for achieving their respective ‘Student of the Year’ awards on the day.
Aenid Doherty, a care worker at Enable Ireland, stated, ‘I am
thrilled to have been awarded the Gerry Clarke Award for Excellence
in Practice from the Open Training College. It is a great honour. He
was a very popular tutor because he was so knowledgeable, yet
so approachable and helpful to anyone who needed a bit of extra
guidance on the Social Care course. I am also surprised and delighted
to have received my Honours Social Care degree here today. I wish to
thank my family, friends and co-workers for all the support along the
way.’
97 Graduates received accredited awards for courses in:
■ BA in Applied Social Studies (Disability)
■ Certificate in Applied Management (Non-profit/Human Services)
■ Person Centred Planning - Focus on the Individual
■ Certificate in Supported Employment
■ Honours BA in Applied Social Studies (Disability)
■ Teaching Independent Living Skills
■ Higher Certificate in Applied Management (Non-profit/Human
Services)
■ BA in Applied Management (Non-profit/Human Services
Each course is delivered through the award winning ‘Supported
Open Learning model’ which is designed specifically to allow frontline
workers and managers to benefit from access to accredited, flexible
educational opportunities that transform their ability to implement
best practice within human services in Ireland today.
More information about OTC courses can be found on the College
website: www.opentrainingcollege.com, or by calling (01)2990580
or emailing enquiries@opentrainingcollege.com
Aenid Doherty ( Enable Ireland) recipient of the Gerry Clarke
Award at the Open Training College Conferring of Awards
SENSATIONAL SWIMMERS
AT COPE FOUNDATION
SUCCESS FOR ALL THE
FAMILY
IN A MULTIDISCIPLINARY effort, a new innovative swimming
programme has been offered to parents and children attending
Cope Foundation. The programme, ‘Sensational Swimmers’ was
a great success with all families that participated. The ‘Sensational
Swimmers’, programme is specifically developed to help children
with specific learning needs, autism, communication difficulties and
sensory difficulties to enjoy success in the water and in learning to
swim. It also works with families to develop their confidence, so
that swimming can be a family activity and experience.
The Sensational Swimming Programme was developed by
the Speech and Language Therapy Department, Physiotherapy
Department Leisure Recreational and Physical Activity
Department in Cope Foundation. The multidisciplinary project
team noticed that in their local community children who had
additional learning needs often struggled to participate in
conventional swimming lessons and/or accessing their community
swimming pool, and that families had difficulty accessing local
pools as a result. The team found that adding specific teaching and
communication strategies, addressing behavioural issues, and using
an understanding of specific learning needs greatly improved the
children’s enjoyment and success in learning to swim.
The programme offers
■ Orientation day for families and children to introduce the child
to the pool
■ Parent Training on Lámh sign language and the use of visual aids
to support transitions, facilitated understanding and increase
attention to activities.
■ A picture of reference and individualised social story as part of
preparation for attending the lessons.
■ 6 weekly sessions with goal progression from developing safety
awareness and confidence in the water to learning specific
swimming instruction.
■ Receipt of a certificate by all the children on completion of the
lessons, with an outline report of goals to continue to focus on,
in order to consolidate the child’s learning.
What parents say!
‘I have now enrolled my son with confidence in swimming lessons in
our local area.’
‘I am ready to bring my children to a public pool and feel more
confident in doing so.’
‘My daughter has used the visual aids at home to request swimming
and to talk to others about what she is doing. ‘
‘My child has loved coming to the class and I wish it would continue.’

THE 2013/2014 SEASON was a momentous one for
Dundalk Football Club. For the first time in 19 years they
have just brought the most coveted trophy in League
of Ireland soccer back to Oriel Park, by winning the SSE
Airtricity League. They also won the EA Sports Cup in a
final which saw Oriel Park filled to capacity. Attendance at
these matches reached several thousands.
Just two years ago I attended Oriel Park in a league
relegation play-off with my son Cillian, where just three
hundred supporters turned up to cheer on the team.
Fortunately they managed to stay in the Premier Division
and went on to completely turn the tide in the last two
years with their new manager Stephen Kenny.
I have written before in Frontline (Issue 89, Winter 2012)
about my 17 year old son Cillian’s devout love for Dundalk
FC, whether for their battle to stay in the top division or
bidding to become league champions. The one constant
that has been his dedicated following of the Lillywhites.
And that devotion is not just one way. For the last number
of years, Dundalk FC have helped my child in more ways
than they could ever know. Yes, they are champions of
the country now in soccer, but they are also champions as
sportsmen and true gentlemen.
Throughout this year several players were sidelined
through injury and forced to sit in the stand for the weekly
matches. My son, who talks and questions nonstop, asked
one night if he could sit with Keith Ward and Stephen
O’Donnell, the team captain. It was one of the first times
that Cillian has left my side, and from
then on they have included him as one
of the lads, answering his never-ending
questions and encouraging his love for the
team all the way. I am full of admiration
for these young players, many of whom are
not much older that Cillian himself and
who week-after-week include him at their
games.
At the EA Sports Cup final match, a
home win for Dundalk, the celebrations
were electric. We were sitting in the stand
and managed to make our way to the
front, where we tried to get as close to
the players as we could. One official who
knows the bond between the team and
Cillian allowed us onto the pitch where
the team celebrated their amazing win
with hordes of fans surrounding them.
Cillian has very restricted mobility and was
quite happy to savour the mood watching
the celebrations and feeling the electric
excitement. All of a sudden Keith Ward,
who had been so good to Cillian all year,
ran over to us and placed the medal which
he had just received around Cillian’s neck
– saying simply ‘That’s for you, Buddy.’
I am never normally stuck for words, but even now
words fail me when I think of that most wonderful gesture.
I remained frozen to the spot, cried , then tried to protest—
pointing out that he would need the medal back. Cillian, of
course, not realising the significance of the gesture, simply
said thanks, and carried on as if it was the most normal
thing in the world. To me, it was the most generous thing
ever and one I know we will never forget. Keith replied that
he won it for Cillian and was happy to give it to him. It’s
hard to believe that such a young lad would be so generous
and unselfish, giving away his first major soccer medal. The
pitch was packed with fans, but I felt as if there was just
the three of us on the field.
There is a mental health campaign called ‘#LittleThings’
running at the moment, where people are encouraged to
talk about the little things that have helped them improve
their mental health. Every time I hear it advertised, I think
of Keith Ward and all the lads on the Dundalk FC team.
Keith’s gesture was no ’little thing’ in my eyes—but it will
forever remind me of a most unselfish act and it keeps
me going on a bad day. The only problem I have now is
trying to get Cillian to take off that medal. He is firmly a
member of the team in his eyes and he has Stephen Kenny
plagued for a contract for next season! Unfortunately
Keith Ward has now signed to play with Sligo Rovers next
season. I haven’t told Cillian yet—we’ll deeply miss him,
but wish him every success at his new club. Sligo Rovers are
extremely lucky to get such a true sportsman.
KEITH WARD DUNDALK FC ARE WINNERS!
Mary Moran on Dundalk footballer Keith Ward’s incredible generosity in giving his EA Sports Cup winners medal to
her son Cillian
C I L L I A N ’ S S T O R Y

F A M I L I E S
SUPPORT FOR FAMILIES: BUILDING ON
SUCCESS
THROUGHOUT THE WORLD, people with intellectual
disabilities are dependent on family carers. This is especially
so in childhood, but in most countries their care-giving
extends well into adulthood and often for a lifetime. What is
remarkable is the exemplary care that most families provide
to their much-loved relatives despite having little prior
experience of disability or any formal training. They have to
be available 24/7, often with few breaks and irrespective of
the toil it takes on their emotional well-being and financial
resources. They are the unsung heroes in creating better
lives for Irish people with disabilities and yet I fear that their
enormous contribution is taken for granted as health and
social care services become more professionalised.
Ironically, austerity cutbacks often hit family carers
hardest; they have to struggle on when short breaks are cut
back, day centres are full and a promised place in residential
care evaporates. But too much tension causes ropes to snap.
I fear that we professionals are in danger of losing the trust
and respect of families, many of whom are better educated,
more articulate and demanding than those of a previous
generation. Positive action is needed throughout our service
systems to forge new partnerships with families so that the
rights of people with intellectual disabilities to a fulfilled life
are achieved.
The lessons from history
Fundamentally we need to loosen the shackles of outmoded
ways of thinking. In common with many other countries,
today’s Irish services were premised on taking over the
care of people with disabilities from their parents. Hard-
pressed families in the 1930s onwards were encouraged to
entrust their disabled relative to religious orders or medical
personnel based in hospital-like settings and ongoing
contact was mainly through ‘visits’. This model of care
dominated for some 50 years—right up until the 1970s—but
the vestiges of it still persist to this day, and at a high cost
to the state both financially and in terms of reputation with
ongoing revelations of past and current abusive practices.
However, around the mid-1950s some brave families
started to question the accepted wisdom of the day and
formed local associations that started to offer community
clinics, preschools, schools and (later) day centres and
group homes. Parents lobbied government to fund the
staff of these new-style services and over the succeeding
years a plethora of different professionals were recruited
with specific training and expertise to meet the particular
medical, therapeutic, educational and social needs of
children and adults with intellectual disabilities. As these
newly formed organisations grew into multi-million
Euro enterprises, the influence of parents waned. These
services too have flourished for over 50 years, but as had
happened with institutions, questions began to be asked
from the 1990s onwards about their value-for-money,
their accountability and their response to individual
needs and aspirations. Hence, in 2015 I suspect we are at
a tipping point when a new philosophy starts to become
more dominant in guiding service provision: namely the
philosophy of ‘personalisation’. This bring about radical
change to the ways in which service supports are delivered
over the coming decades, in the same way that community
services transformed institutional care. It will not be merely
a repackaging of old wine in new bottles: this new wine will
destroy the old bottles.
Family-centred working
Families will have to be central in personalised services.
Indeed, from their perspective, they always have provided
personalised care to their relative. Usually it has been
services who have treated children and adults as part of
a group rather than as individuals. Thankfully in recent
decades we have seen the emergence of family-centred
practices. This began in the 1980s with home-based early
intervention services led by visionary psychologists,
therapists, social workers and educators, and it has spread
through inclusive schooling, short-break provision,
supported employment schemes, leisure activities and
personalised living options.
In all these initiatives, the involvement of the family
has been central to their success. They have been the
sustainers, if not the instigators and drivers, of new ways of
supporting people with intellectual disability. Many of these
new schemes have been subjected to thorough evaluation
and research—often far in excess of the scrutiny to which
Roy McConkey, Emeritus Professor of Developmental Disabilities, University of Ulster, argues that service systems
have to forge new partnerships with families so that the rights of people with intellectual disabilities to a fulfilled life
are achieved.

traditional services are exposed. I have been privileged to
lead on many of these evaluations in both parts of Ireland,
as well as internationally: the results of the evaluations are
detailed in many reports and articles. Reflecting back on
these findings, three strategies contribute to the success
of personalisation. They cost little to implement and
are embarrassingly obvious. Indeed, some may question
the value of spending thousands of euros on research to
discover them. In defence, I would simply state many
millions more are spent every year in services in which
these attributes are not present and arguably not even
expected.
Trusted relationships
The relationships that professional workers have with a
person with intellectual disabilities, their families and with
one another are undoubtedly the number one priority.
Central to this are the human qualities (such as warmth,
concern, friendliness, sense of humour, commitment)
that each brings to the relationships. They weigh much
more than any qualifications or expertise. These personal
characteristics may be honed through training, but they
cannot be taught. Ironically, I have seen these qualities
more often in staff working in the lowest salary grades than
I have in highly paid managers and clinicians. Recruitment
practices, job specifications and supervision sessions all
need to emphasise these human qualities and how they
are deployed, especially in times of distress, dispute and
disappointment. Active listening to people is the key to
relationship building—and maintaining contact though
phone, text or social media is essential and can cost little
in terms of time. Paid supporters will find it easier to
build these relationships in natural locations such as the
family home, rather than in clinic settings. These contexts
also enable a more complete assessment to be made of
the family’s needs as well as those of the person with the
disability.
Information
The most common complaint I have heard over the
years from families is a lack of information and poor
communication. For many families, coping with disability
is a totally a new experience. Staff need to be proactive in
giving information to families and talking through what
it could mean for them. Likewise, staff need to respond
speedily to family’s request for information, even if it starts
with ‘I don’t know, but I’ll find out.’ Being honest about
one’s ignorance can apply, especially when clinicians are
asked to speculate about the prognosis following their
assessments. Likewise differences of opinion between
parents and professionals need to be respectfully negotiated
and accurate information about choices and options can
assist this. This is particularly important around transitions
between services. The reasons why families may be refused
services need to be carefully explained and set in the
context of alternative options. Families still talk of having
to ‘fight’ to get the services they require.
Coordination
Families bemoan the number of people and agencies
with whom they have to deal. Their lack of coordination
frustrates parents as they retell their story and deal with
clashing appointments and conflicting advice. Well-tried
solutions start with having a ‘key-worker’/’coordinator’ for
each family, through whom communications from different
professionals and agencies can be channelled. Also all the
parties need to contribute to a written and updated family-
centred plan that embraces all the supports provided to the
person with a disability and to the family, and which is held
by the family and shared with all parties to it. However,
the thorniest coordination issue is often around service
transitions: from child to adult services, for example. The
lack of forward planning and the dearth of communications
between staff in the different services is a persistent
complaint that speaks volumes about existing mindsets and
service structures.
And there’s more...
Of course there are many other strategies that will transform
present service provision, such as personalised funding
arrangements, greater use of mainstream rather than
specialist services, and the growth of advocacy by persons
with intellectual disability, to name but a few. Equally,
societal changes will put extra pressure on families: the
increase in single parenting; the contraction in extended
families and in neighbourhood supports. Underpinning
all of this will be increasing numbers of old and very old
persons with an intellectual disability, and more children
with complex needs surviving into adulthood. Our already
stretched health and social care budgets will not be able to
afford the types of services currently provided. A continuing
challenge will be to ensure that those with the greatest
need receive the most support, as will be finding ways of
providing personalised care when families are no longer
available or able to do so. The agenda may be daunting, but
it is manageable given the passion, creativity and expertise
that thankfully still exists in Ireland. This, over the years,
has been reflected in the pages of Frontline and hopefully
will continue to do so in the years ahead.
In the coming decades families inevitably will need to
become more self-reliant in the sense of taking control
over their lives, but being actively supported in so doing.
We have growing evidence internationally from Canada,
Australia and Scandinavia, as well as from Ireland, that
many families are not only willing to take on this role but
that in doing so, benefits are brought to everyone and most
importantly to their disabled relatives. The bigger question
is whether we can find the people, the strategies and the
systems that will provide reliable and effective support to
families throughout our island. I am confident that we will,
provided that we change current mindsets among families
and service personnel. Already a good start has been made,
but the best is yet to come.
Roy began his career in intellectual disability in 1970 at
Manchester University. He moved to St Michael’s House
Dublin in 1977 and then on to work with the Brothers of
Charity in Scotland in 1988, before returning to Northern
Ireland in 1997. In recent years he has maintained close
contact with Irish services through his Visiting Professorship
at Trinity College and his involvement with the Health
Research Board, Genio Trust and the National Federation
of Voluntary Bodies. A list of his publications is available at:
www.researchgate.net/profile/Roy_Mcconkey.

THE ECONOMIC COSTS OF DISABILITY FOR
FAMILIES
John Cullinan, NUI Galway, argues that in terms of educational attainment, labour market outcomes and social
participation people with disabilities fare significantly worse across a wide range of measures.
IN A MUCH-CITED SPEECH to the World Bank in 2004,
the Nobel Prize winning economist Amartya Sen made a
distinction between two types of economic costs, or what
he called ‘handicaps’, that tend to be associated with
disability (Sen 2004). First, according to Sen, individuals
with disabilities face lower human capital accumulation (e.g.
education) possibilities, are less likely to be employed, and
even if employed are likely to have lower earnings. This he
called an ‘earnings handicap’. Second, because individuals
with disabilities tend to have extra needs, they face greater
difficulties in achieving economic well-being from a given
level of resources, i.e. they face what Sen called a ‘conversion
handicap’. Together these two types of economic costs have
very significant implications for the economic situation of
the disabled population and their families. In this context,
this article reviews the evidence on these costs in Ireland and
discusses their implications for poverty, deprivation, economic
hardship and social exclusion. It also sets out some thoughts
on an appropriate public policy response.
Education and labour market outcomes
Analysing the relationship between disability and educational
attainment is complicated by the fact that, while disability can
have a negative impact on educational attainment, it is also
the case that low education is associated with an increased
probability of acquiring a disability. Nonetheless, the evidence
in relation to the association between disability status and
level of educational attainment is striking. For example, Nolan
(2014a) shows that for adults with disabilities, 43% have not
progressed beyond primary education, compared to 19% of
all adults. Indeed, for those with an intellectual and learning
disability, 63% have not progressed to second level education.
Furthermore, he shows that only 10% of people with
disabilities have a third-level degree, compared to 19% of all
adults. Once individual-level differences are accounted for (e.g.
age and gender), analysis of the relationship between long-
term illness or disability and educational attainment suggests
that the probability of having no educational qualifications is
increased by 22 percentage points for someone who is severely
hampered as a result of disability, and about 18 percentage
points higher if hampered to some extent (Nolan, 2014a). The
implications of this and other research undertaken on the
issue are that levels of educational attainment are considerably
lower amongst the disabled, with negative implications for a
range of important future outcomes, including labour market
outcomes.
Moving to the labour market, recent research also shows
that people with disabilities face many barriers to full
participation in the labour market and, as a consequence,
their labour force participation rates and employment rates are
considerably lower than others of working age (Nolan, 2004b).
For example, in the 2006 Census of Population, only 35% of
persons with a disability aged between 25 and 64 years were in
work, compared to 73% of all adults. The percentage at work
was particularly low for those with a physical, psychological or
emotional disability. However, it is not just the likelihood of
having a job that is affected. Disability is also likely to have an
impact on earnings for those who are in work. Nolan (2004b)
states that ‘while estimating these effects is complicated by the
fact that those with a disability and in employment may have
distinctive characteristics, the evidence suggests a significantly
lower predicted hourly wage for an otherwise identical
individual reporting a hampering chronic illness or disability.’
Poverty and social exclusion
Thus far the evidence presented suggests that individuals with
a disability are negatively impacted in terms of educational
attainment and labour market outcomes, both of which
are crucial for the economic well-being of these individuals
and their families. In terms of these impacts, Nolan (2014a)
highlights the heightened poverty risk and experience of
consistent poverty for people who had a chronic illness or
health problem, or who were limited in their activities. For
example, the so-called ‘at risk of poverty’ rate was considerably
higher for households with an individual with a disability
(16.0% versus 12.7% in 2008), while the ‘consistent’ poverty
rate was double (6.4% versus 3.2%). The work also highlights
F A M I L I E S

that disability impacts on broader aspects of participation in
community life and that this is also of central relevance in
terms of the social exclusion experienced by disabled people
more broadly (Nolan, 2014a).
Direct costs
The discussion so far tells only part of the story in terms of
the economic costs of disability for families. The impacts
of disability on educational attainment and labour market
outcomes are clearly related to Sen’s notion of an ‘earnings
handicap’. However, of equal, or perhaps even more,
significance is his concept of a ‘conversion handicap’ and
recent work by Cullinan and Lyons (2014) has investigated
this issue in detail. Their analysis considered the direct private
economic costs borne by households containing disabled
persons when compared to the wider population. Because
households with an individual with a disability divert scarce
resources (i.e. their income) to purchase disability-related
goods and services, they suffer from a conversion handicap
in terms of translating their income into economic well-
being. Using a ‘standard of living’ approach, the authors
defined the direct economic costs of disability as the extra
income required by a so-called ‘disabled household’ to achieve
the same standard of living as an equivalent ‘non-disabled
household’ and sought to estimate these direct cost.
Using data for 2011, the study found that these direct
economic costs are significant, vary by the number of
individuals within a household with a disability and also
by the extent to which an individual is limited by their
condition/disability. Overall the main finding is that the
estimated economic cost of adult disability is 35.4% of income
(or about €207 per week) on average, using a ‘condition-
based’ measure of disability, and 54.5% (or €276 per week)
on average using a ‘limitation-based’ measure of disability.
These are the central estimates of the additional income that
would be required for disabled households at the median
income levels to attain the same standard of living as an
equivalent non-disabled household. Other findings of the
research suggest that the additional costs of disability are
borne most heavily by those individuals who suffer the most
from their disability in their day-to-day lives, and those living
in households with multiple disabilities.
These findings are important. They suggest that disabled
households divert a very high percentage of their income
to goods and services they would not ordinarily choose
to purchase. This is at the expense of goods and services
that are typically associated with economic well-being,
which they may be forced to forego. The results also have
important implications for the measurement of poverty
amongst those with a disability in Ireland. Since disability
reduces the standard of living of individuals with a disability,
poverty measures such as those presented above will likely
underestimate the needs of these individuals. Thus, adjusting
household data for disability would actually likely increase
poverty rates in the country.
What to do?
In terms of policy implications, the evidence clearly suggests
that current policy does not go far enough in addressing the
extra costs faced by individuals with a disability in Ireland and
it supports the case for the introduction of a ‘cost of disability
payment’, a cash payment that takes into account the extra
and unavoidable expenses incurred by individuals with a
disability and their families. There has been a protracted
debate in Ireland concerning the possible introduction of
a cost of disability payment, though the importance of
this issue has been acknowledged by many, including the
Commission on the Status of Disabilities in Ireland and the
United Nations. While the level and nature of government
assistance are ultimately determined by social and political
choices, the evidence presented here is that there are a wide
range of very significant direct and indirect economic costs of
disability that imply people with disabilities and their families
are much more likely to face poverty and economic hardship.
Quite simply, current policy does not adequately address these
issues.
The economic impact of childhood disability
While the analysis presented thus far has considered the
economic costs of disability for adults and their families,
recent research has also considered some of these issues
for children with disabilities (Cullinan and Roddy, 2014).
In particular, the research presented, for the first time, a
socioeconomic profile of childhood disability in an Irish
context. Using data from the Growing Up in Ireland survey, it
considered the association between a range of socioeconomic
measures and the disability status of nine-year-old children in
Ireland. The findings are striking. They suggest that, overall,
the primary carer of a child with a disability is considerably
less likely to participate in the labour market and considerably
more likely to turn down work opportunities, when compared
to a primary carer of a child without a disability. Indeed,
these differences are found to be more pronounced, the more
limiting is the child’s disability. Similar patterns are also found
in relation to parental education and social class. Parents of
a child with a disability are less likely to be educated at third
level and more likely to be in the lowest social class. Not
surprisingly, these households also tend to have lower incomes
and much greater difficulty in making ends meet. In fact, for
all of the socioeconomic measures examined in the research,
the presence of a child with a disability in a household is
strongly correlated with worse outcomes. In considering these
results, it is important to also acknowledge the intangible costs
of childhood disability to the child, their family and society.
Studies show that raising a child with a disability places
complex demands upon various aspects of family functioning
and may increase stress, as well as affecting family members’
health and general wellbeing (Reichman et al. 2008; ISPCC
2007; Seltzer et al. 2001).
In conclusion
The research described in this article portrays a worrying
picture of the economic circumstances of the disabled and
their families in Ireland. The evidence is clear that in terms of
educational attainment, labour market outcomes and social
participation more generally, people with disabilities who are
hampered in their day-to-day lives fare significantly worse
across a wide range of measures. Furthermore, people with
disabilities and their families face a whole host of additional
direct costs which lead to a further reduction in their living
standards. As it stands, it is evident that policy in Ireland
does not go far enough in addressing these issues and, in this
context, a cost of disability payment should be considered as a
way of alleviating some of these adverse outcomes.

F A M I L I E S
RESPITE IS NOT SOME MYTHICAL UNICORN
Emma Dunne, whose daughter has autism, says that respite is not a luxury, it’s a necessity.
AS A PARENT CUDDLING my new baby, ‘respite’ was never a
term or an idea that entered my head. To be honest, I had no
real understanding of what that term entailed or would later
come to mean in my daughter’s life, and mine. When Tess was
born, I dreamed of my daughter growing up and all the typical
girly adventures she would have and how nice it was that she
had a sister to share all these moments with—school, boyfriends,
weddings, babies—the list in my head was endless. Then, two
and a half years later, without welcome or warning, came the
diagnosis of autism.
We were surrounded by support and the idea that if we worked
hard enough, at home and at school, autism didn’t have to
mean an end to all those dreams for Tess. Although we have long
since accepted that autism is here to stay, we are now facing a
different future as a family. Tess is now attending St Paul’s Special
School for children with autism. She is a gorgeous, affectionate
and lovable 8-year-old. Tess is also non-verbal, not toilet trained,
impaired by Sensory Processing Disorder sleeping difficulties,
learning disabled, fast, strong and has an incredible desire to
bolt or escape out of every situation. Tess’ daily care needs are
relentless. She cannot be left alone for even a few minutes; and
of course this has a huge impact on me, my husband and her 3
siblings. The older and stronger Tess has become, the challenges
of bringing her anywhere make me question if it is actually
worth it. The embarrassment and disappointment that her
siblings often feel, the stares and tuts we encounter from other
parents, and constantly trying to manage and keep her safe make
me think that it’s easier just to stay home.
We are tired. We are in need of a break. Respite should no
longer be this mythical unicorn that people talk about; respite
should be a secure and safe service provided to families in our
situation. We have been on a waiting list for respite services since
Tess started in St Paul’s 4 years ago. The list hasn’t moved, it has
only increased in size. We are still in the same place on that list.
Instead of the HSE increasing the services in relation to the need
and demand, respite has become unreliable and significantly
reduced (from 4 houses to 3 houses at St Paul’s).
Respite is not only beneficial for us as parents, but it is also
incredibly valuable for our other 3 children. Tess’ siblings deserve
a chance to do some typical family activities that may not be
suitable for someone with ASD. Wide open spaces, small crowded
spaces, anything with a queue, places that are really noisy or
busy or places where you are meant to be still and quiet—it’s
nearly impossible to plan an outing that doesn’t involve one of
those elements. And that can mean that we have to leave early,
or simply cannot attend the event.
We were advised to transfer Tess from St Michael’s House to
St Paul’s Hospital because our case workers could see (before
we could) that respite was going to be a primary need in our
future. St Paul’s, as well as being a fantastic school, had the best
respite services available. I shrugged off the idea of respite in the
beginning, as I didn’t think I would be able to hand over the
care of my daughter to strangers. I did not think that anyone else
would be able to care for my child like I could or should. But I
knew in my head that Tess’ name should be on the waiting list
and I was hopeful that by the time we were designated a place
that my heart would have caught up with this decision. Well,
my heart caught up with it years ago. I can see the huge benefits
to a stable and structured respite service. I know that I would be
better able, physically and emotionally, to care for my daughter
long term, if I had days to rest and was able to plan days away on
my own or to look forward to special adventures with my other
children. And Tess would have the opportunity to develop bonds
with her peers. All of my other children have had countless
play dates, sleepovers, birthday party invites—normal growing-
up activities like going to the cinema or bowling with friends.
If respite was provided, this would enable Tess to take part in
activities outside the school setting and improve her interactions
with her peer group.
As I mentioned, respite was not something I dreamed of in the
beginning, but it certainly is now. I question the HSE’s reluctance
to provide an adequate service to exhausted parents and isolated
children. Does the HSE feel that parents caring at home for their
disabled children are not worth helping? Does the HSE feel that
because my child has a disability she does not deserve adequate
services? Is it because Tess doesn’t speak, that she has no right to
complain? The general public seem more concerned with water
charges than further cuts to the disability services. People I speak
to assume that if you have a need, and you have a diagnosis, that
you will be given what you need. But we know that this is far
from the truth.
There is a new model of respite bubbling under the service
and it feels like cost saving measures to the most vulnerable yet

again. I have been told that the model of respite where a child is
minded by a family in the community is working in some parts
of the country. This doesn’t sit well with me as a parent. I want
my child to have a secure respite unit with her peers, with people
she already. I would rather have a team of skilled people looking
after my child in a house that was suited to Tess’ level of ‘busy’. I
don’t believe any amount of HSE training to the potential family
will prepare them for the reach of a child with Pica or a child
who is determined to escape out any unlocked window or door.
My stress and worry would be constant. A host family would be
garda vetted, but who controls who else enters the home? Who is
accountable? Handing over responsibility of care for a non-verbal
child, even for a night, is not taken lightly.
We would have been better off years ago, when there was
after-school respite care for a few hours while you waited for a
place in one of the respite houses, or that you would have access
to a social worker to help you navigate the HSE. The decline in
services due to hiring embargoes and funding reductions have
had a detrimental effect on the families living with disability.
Now I have the added worry of being offered a different form of
respite that I am not entirely happy with and if I refuse to accept
it, will that be filed as ‘respite offered and refused’? Does my need
for respite get ignored because I turned down what I feel is an
unacceptable alternative? What are the chances that the HSE will
view each case independently and determine which children are
suitable for community respite or in-home respite? My previous
experiences with disability services leaves me frightened that a
suitable respite service is going to remain a thing of myths. Still,
I’m hopeful that this won’t be the case. I know that respite is a
primary need in our house, and I asked other families in a similar
situation how they felt about respite.
Jaqueline K responded: My son will be 8 years old in January
2015. His diagnosis is autism and intellectual disability. He has
two siblings, one older and one younger. He currently attends a
special school and receives transport to and from the school on a
daily basis.
The school used to offer a respite service one night per week,
every fifth weekend and a two-week respite holiday per year. That
was a lifeline for the families receiving it. However, since my son
started at the school we have only received 3 weeks of holiday
respite in total. Since May of last year, even holiday respite has
been cancelled. There are a number of factors for this, but it is
mainly lack of funding, cutbacks and an embargo on hiring staff.
Life on a daily basis with Autism can be extremely draining.
It’s the same old saying ‘come spend a day in my shoes’ to see
exactly what living with special needs/autism is like. As a full-
time mother I am the carer in my son’s life. I attend all of his
appointments and make sure his needs are met. His needs do
take priority in the family—something his two siblings find hard
to accept on a number of levels. Yes, some days go well, but we
seldom go to events as a family unit.
Over the years we have found that there are very few people
willing or capable of caring for our son. Family members
seldom suggest helping out. So respite would be a service that
we as a family could benefit from. The ideal situation would be
the school respite, where he is already familiar with the other
children. In the past it has been suggested that the way forward
for us may be respite with a host family. But I’m hesitant. Apart
from recent revelations of abuse of children and adults with
disabilities in care, I find it very hard to accept a reason why
people wish to accept our challenged children into their homes
to care for them in exchange for payment. I would much rather
the HSE provided the money to my son, so that I could choose a
care assistant to work for me at my home.
Jackie O’B said: If I felt like committing suicide because of the
hopelessness and lack of support, I would be told to ‘seek help’
before taking such a tragic step. Well, here we are: we are asking
for help, and it’s just one closed door after another. If I weren’t
here, they would have to pay to provide full-time care for my
child. It simply doesn’t make sense! How about helping by giving
respite to families, so we can take care of ourselves and those who
are dependent on us?
Nicole added: My biggest fear is what will happen when we
die. To be honest I can’t see services changing at all because of
the lack of funding.
Carol, who’s son is now in adult services, mentioned: We used
to have respite. The difference not having it anymore has made
to the quality of my life and my ability to cope is staggering. I
have just one or two nights a year to myself. I’m exhausted all
the time. Eric has Norovirus and I was up 3 nights in a row, just
having to get on with it during the day. He hasn’t been to his
service for 2 weeks because of one thing or another. It’s torture.
Dermot MacEvilly’s son is currently attending respite. Dermot
stated the following: “It is difficult for those that do not have
a child with autism to understand the scale of the challenge of
raising an autistic child—or, indeed, the impact it has on the
rest of the family, in particular their siblings. Liam lacks any
danger awareness, has frequent toileting accidents, has very
poor attention span and is prone to having tantrum rages. As a
result, Liam needs constant line-of-slight supervision, with an
adult with him at all times. The longest we would leave Liam
alone would be 3 or 4 minutes. Our day starts at about 7am most
mornings, but at least once a fortnight Liam will wake before
5am and will be awake for the rest of the day. When he’s not in
school, one of us has to mind him constantly. Liam goes to bed
around 9pm most nights he will need his nappy to be changed.
It is frequently 11pm before Liam goes to sleep, before which he
can be quite agitated and vocal. So in short, we are on duty from
7am to 11pm most days. On top of that, we have to try and do
a day’s work, run a home and raise a family, as best we can. The
consequence of this is that we are constantly exhausted, and
mentally and emotionally stressed. We struggle to give Liam’s
brother anything like the level of attention and care he should by
right expect, which further adds to our stress.
The one chink of light in the midst of this chaos is respite.
Respite gives us a window to spend quality time with Liam’s
brother and for us to dial off for a night. Respite doesn’t cure
anything, it merely opens the valve a little to release some of the
pressure in our lives. It gives us the space to recoup and helps to
prevent the level of stress from reaching a point that is simply
too much to bear.
Respite is not a holiday, or a luxury – it’s a necessity. Without
it, it is not possible for parents of severally autistic children who
attend institutions like St Paul’s to keep going without either
their health, or their family life, or both from failing. With each
family I spoke to, it was clear that we are all bound by the same
needs and the same concerns. We are all desperate to have a
suitable and reliable respite service as part of our child’s care plan.
Respite is more than a desire—it is a most basic need.
Emma Dunne, originally from Ontario, Canada, lives in Balbriggan
with her husband James and their four children. She is Tessa’s full
time carer. Tessa was diagnosed with Autism in March 2009. Prior to
Tessa’s diagnosis, Emma worked for Citibank in Dublin.

‘I don’t see my son’s disability as limiting my hopes and dreams for his
future in any way. My job as his Mum is to maximise the services and
supports available to him to allow him to reach his full potential.’
In April 2005, I was excited to learn I was expecting my first baby.
My road to parenthood had begun. This journey was to be filled
with excitement, anticipation and wonder, and greeted with many
expectations. On 5 January 2006, I gave birth to my gorgeous son
James, and in that moment fuelled with emotion, all my dreams
came true. From day dot, you are anticipating every new day as an
adventure, one filled with many firsts—first eye contact, first smile
first time to recognise hands, fingers toes and so on.
However whilst enjoying being a new mum, by the time James
was seven months old, I had noticed that he was not sitting up
properly or maintaining posture. He also had restricted movement
and was not physically achieving expected developmental
milestones. I was anxiously waiting for him to sit up, roll, crawl, sit to
stand, kick his bed covers off—but nothing. And so my new journey
began, call it instinct but sometimes mums know.
We first attended Our Lady’s Hospital in Crumlin, where we met
a wonderful man, Dr Colm Costigan. He talked me very rationally
through his ‘process of elimination’ approach, where they allow a
certain amount of time for children to physically catch up in the
percentile bracket for developmental checks. In other words, they
would wait and see by giving James time to ‘catch up’ in certain
brackets, giving him physiotherapy to encourage physical activity
during that time.
It was at this point that I caught a glimpse of the road ahead.
James turned two and, irrespective of the fantastic physiotherapy
and occupational therapy he received from OLCH, it was evident
something was amiss. Dr Costigan, gently spoken, informed me
that he suspected James had cerebral palsy and he would refer us
to neurology for confirmation of that. In that instant, in many ways
I felt like my world was collapsing around me, but I also had an
overwhelming sense of relief because I finally secured a diagnosis
which would help us move forward in the right direction.
I don’t remember the drive home that day. But I remember
collapsing into my mum’s arms on my arrival home. To anyone who
hasn’t gone through it, it’s a hard one to explain. You are filled with
grief, sadness, a sense of loss and fear because, as I explained, when
you first become a parent, you somehow assume all those milestones
will be met and you never plan around situations like ours. There
could have been a thousand people around me that afternoon, and
yet I felt so lonely and completely lost.
The fear of the unknown was very strong: the lack of
understanding of my son’s condition, what services he would need,
what the future would hold for us. At that point, we were referred
to an Early Intervention Centre in Enable Ireland. My gusto had
kicked in at that point and I was ready for whatever challenges lay
ahead. The most important thing that struck me at this time was
that despite the difficult diagnosis and the many challenges ahead,
two vital things didn’t change: I was still a very happy mum and still
had a wonderful little boy. We still lived our lives to the full every day,
and—almost without realising it—we had already begun finding our
way around things to give James independent ability to function day
to day. The fear was going away.
James began receiving physiotherapy which strengthened
his weak muscles, as well as speech and language therapy to
encourage communication. Emotional support was just as
important, so a social worker and a psychologist also worked
with James and our family. Although it can sometimes be difficult
emotionally, there were many more good days with all the support
of the service. We began to focus on the ability, not disability.
To bring you to where we are today—James is now 8, he attends
a mainstream primary school and is currently in 2nd class. One of
the most visible challenges we have met is the public perception
of disability. My attitude towards disability is to be proactive, not
allowing the situation to define us. Yes we acknowledge it, but we
use that acknowledgement to empower us and always be open
and honest. This demystifies stigma associated with disability. I feel
perception is a huge barrier which prevents inclusion in our society.
Persons with disability, my son included, strive for equality and
equal opportunity to participate in all aspects of living.
In James’ school setting, the role of his special needs assistance
is crucial to allow him to be independent. Perception in our
community can be somewhat skewed as to the role of the SNA.
I equate the role of an SNA to the role of a PA which allows the
person with disability to have independence and the ability to
maximise choice to live and be part of an inclusive society. The
role of an SNA is not to create an air of dependency, it is led by
the needs of the person with disability and to remove obstacles
which may cause exclusion in the school setting. A common barrier
JAMES’ STORY:
A PARENT’S
PERSPECTIVE
Vicki Casserly tells the story of her son James who was
born with cerebral palsy.
F A M I L I E S

or misperception I have been met with is attitudes to children
with disability attending mainstream school. I sometimes have to
make it clear that I don’t expect James just to do well by attending
school—like any parent, I expect him to do his best, and that is
hugely different.
As a parent, I focus my time and energy in overcoming obstacles,
focusing on what can be done to empower my son to live life to
the maximum. I feel as a modern society, more emphasis should
be put on education and awareness to give us the desired universal
community we aspire too.
A greater sense of rights and entitlements should be more easily
available for parents entering this journey—with clarity given on
options available such as Domiciliary Carers Allowance, Carers
Allowance, Carers Benefit, Carers Leave, support groups and so on.
Taking some of the stress away from what is already a stressful and
daunting experience, and informing parents of options can lighten
the load.
To summarise my hopes and aspirations for James, I want him to
grow up into a strong, confident young man, happy, independent
and, most of all, healthy. When James grows up, he wants to travel
the world (starting in Barcelona, because it’s the most accessible
city in Europe), and to be a Paralympian swimmer. Like so many
other parents, I hope our society evolves and aspires to allow James
and others to achieve this.
PARENTS AND PROFESSIONALS: THE FARMER
AND THE COWMAN?
IN 1975, I PICKED UP A MAGAZINE in the waiting room of
an intellectual disability centre where we had gone to have our
little daughter assessed. There were the usual pictures of open
days, outings, accounts of great leaps forward. But the article I
remember was the story of a boy from a remote area who entered
the agency’s residential school at four years of age, unable to
speak or play properly. After a few years of care and stimulation
at the school, he was pronounced ‘normal’ and left. His
apparent intellectual disability was the result of a deprived home
background.
The writer did acknowledge that his was an unusual case, but
I can still remember the paralysing mixture of fear and hope
that I felt. I had thought of myself as a ‘good’ parent; but had I,
somehow, been doing the ‘wrong’ thing for the last three years?
Was there a chance that these professionals had some secret
magic that would unlock my daughter’s powers? By the time we
reached the psychologist’s parlour, I was almost a suitable case for
treatment.
This story illustrates the problems that can grow up in the
relationship between parent and professional. Both have
somewhat unrealistic fears and expectations. Professionals—
particularly medical professionals—are socialised into the values
of optimism, progress and action. Parents, on the other hand,
often feel slightly guilty about having to ask for help. Even when
they ‘know’ that their child’s handicap is not their fault, there
is often a residual guilt. At first their need to do something—
anything—for their child can make it difficult for them to
evaluate what the professionals offer. If their assessment of the
child seems like cloud-cuckoo land, it may be that they don’t
really know her.
Parents do have a great deal more clout than they like to think,
but it is always difficult for them to insist on their point of view
if it conflicts with the advice of people who have jargon, statistics
and videos on their side. This is particularly obvious where
parents are poor. But even when they are as educated as those on
the other side of the desk, parents are still hampered by the great
fear that their son or daughter could lose his/her place. Most
agencies feel that this fear is quite unfounded; some are upset
that it should even be voiced; but it crops up over and over again
among parents, particularly when they mention things they
would like changed. Where there is a chronic shortage of places,
the unspoken bottom line is always: hold on to your place,
you’re lucky to have it. Unlike the ‘normal’ world, you will not
be able to move your child to the school in the next parish. The
only way to switch services is to move house!
I’ve always had a good relationship with the staff who
have looked after my daughter over the years; I admire their
devotion and enthusiasm. Yet a phrase in an article by Chris
Conliffe recently leapt off the page at me: ‘the worlds of parents
and professionals seldom overlap’. Parents take over when
the professionals go off duty, and where the person with the
handicap doesn’t talk much, the two worlds may remain a
mystery to each other. I sometimes think the problem is one
of language. If I take my daughter to the shops, that’s how I
express it; if the staff do it, they call it an exercise in community
integration. Perhaps a bit of normalisation here would not go
amiss!
While I admire most of the professionals for their optimism in
the face of slow or no progress, the down-side of that optimism
can be a brushing-aside of all difficulties in the name of positive
thinking. Parents are in disability for the long haul, they are there
when problems surface after-hours and they cannot move on to
a new area if a project doesn’t live up to the hype. This makes
them cautious about change. There can be an unconsciously
patronising attitude to parents by professionals wishing to get
new schemes off the ground. ‘Oh, the parents will have to be
educated’, they reply airily, to any objections. Now, while we
parents do have our neurotic and blinkered moments, so too,
I might venture to suggest, has the odd professional. Among
adults, any education worth having is a two-way affair.
I think if I was back in that assessment waiting room today, I
would take out my felt pen and write: ‘This magazine displays an
anti-parent bias.’ Perhaps I’ve just got older and more assertive,
but I know now from my own experience that there are as many
children rescued by their parents’ unswerving devotion in the
face of professional disbelief, as there are cases like that little
boy’s. And most children with a disability need parents on one
side and professionals on the other, if they are to make any sort
of fist out of our world.
(First published in Issue 9 of Frontline, Spring 1991)
Máiríde Woods writes about the delicate relationship between the parents of those with an intellectual disability and
the professionals who treat their children.

F A M I L I E S
CREATING COMMUNITY AND ENJOYING LIFE:
THE STORY OF FIONNATHAN PRODUCTIONS
Jonathan and Fionn Angus write on how an unfortunate break from school led to an appearance on RTÉ’s Saturday
Night Show and so much more.
WE’D LIKE TO tell you about Fionnathan Productions, an arts
collaborative and video-making enterprise that intends to
change the world. First, we’ll tell you how it started, then why
we are doing it, then what we are hoping to do next.
How Fionnathan started
To introduce ourselves, Fionnathan comes from Fionn and
Jonathan. Fionn is a young man who completed secondary
school this year in County Clare, and Jonathan is his father.
The two of us decided to set up this project when we met with
adverse circumstances. The mainstream secondary school had
made a decision to exclude Fionn halfway through his first year
of the Leaving Cert Applied programme. They were wrong to
do this, and we proved as much, winning an appeal to have him
reinstated. But the process took four months, during which his
mother and father (both trained teachers) home-schooled him.
His mother taught the core subjects, which left his father the fun
job: helping him to explore and develop what he loved. He has
three main areas of interest:
1. Ever since he was small, Fionn has nurtured an abiding
interest in wildlife. He is fascinated by animals, and has an
interest in agriculture, zoology, ecology, and conservation.
He enjoys travelling—around Ireland and around the world.
And like his father, Fionn loves to read books.
2. Fionn plays the violin. Most often he plays Irish traditional
music.
3. Fionn is fascinated by movie and documentary film making.
And, like a lot of his peers, he is mesmerised by the world of
celebrity.
As a family, we have joined numerous nature and
conservation groups, and enjoy going on guided walks and
attending workshops. We heard about the White Tailed Sea
Eagle reintroduction project this way. 100 young eagles were
relocated from Norway and set free in Kerry. Through an
amazing stroke of luck, the first pair of eagles to build a nest
did so on an island just outside the harbour of Mountshannon,
where we live. Along with many other community members and
birdwatchers from farther afield, Fionn has spent many hours
observing the first sea eaglets in Ireland in over 100 years. There
is a page about Fionn’s involvement on the Mountshannon
Eagles website, and Fionn’s thoughts on the tragic demise of
one of the White Tailed Sea Eagles were read out on Clare FM,
and shared widely on social media.
But Fionn’s interests extend beyond the aviary. We spent a
week of this past July with the Irish Whale and Dolphin Group
surveying from Donegal to Galway for bottlenose dolphins.
On the yacht Celtic Mist (once owned by former Taoiseach
Charles Haughey) we were led by Marine Biologist Dr Simon
Berrow in the use of towed hydrophone and photo-id visual
techniques, as well as biopsy sampling of all the groups we
encountered. We surveyed inshore waters during the day and
went ashore on islands in the evening, inviting people onboard
to discuss dolphin conservation. This survey also supported the
development of cetacean recording in the area, by promoting
IWDG recording schemes.
Fionn is a diligent student, and he has become knowledgeable
about all types of animals. Once he had memorised the
taxonomical orders of mammals, we decided to prepare a
presentation for school children on Ireland’s mammals. With
the help of a slide show, Fionn talks to the children and answers
their questions. We next developed talks on the return of the
sea eagle to Ireland, and on studying whales and dolphins.
Fionnathan are recognised by the Heritage Council as ‘Heritage
Experts’, and we joined the Heritage in Schools Programme
Panel. In fact, Fionn is Ireland’s youngest Heritage Expert.
Neither a small stammer nor the fear of public speaking has
prevented Fionn and Jonathan from taking up subsequent offers
to give talks to various groups. At Fota Wildlife Park, Fionn
joined the mayor of Cork on the podium to launch the Tour
de Munster. We were then invited to present talks on effective
community inclusion and participation at Down Syndrome
Limerick’s AGM and at the International Initiative for Disability
Leadership Exchange, hosted this last June in Dublin by Leap (a

wonderful family leadership group). Through the latter we met
people doing innovative and inspiring work in England, Canada,
Australia and New Zealand. There were a number people
interested in collaborating with us, so there might be some
travelling in our future. And, during the final month of 2014, we
are doing a short North American tour, speaking to audiences in
Canada and the United States.
Perhaps it may surprise you that the son is the more
accomplished of the two musically. Thanks to weekly individual
lessons and (pretty much) daily practicing since the age of
nine, Fionn has a strong and confident footing in traditional
Irish music. Jonathan is working hard to catch up, and often
accompanies him on the guitar. We love to perform publicly, at
farmers’ markets and anywhere that groups of people gather.
You may have heard us, as we’ve played over the past two years
in twenty Irish cities, towns, and villages, plus two weddings
(no funerals), one pub session, two talent shows, on six islands
off the west coast, and on numerous farms—to serenade cows,
horses and sheep. Recently, we have begun monthly charity
busks, donating whatever money we collect to worthwhile
groups.
In the summer of 2013, we interviewed eight people with
Down Syndrome who live in County Clare. This project arose
from the desire to give a group of people some insight into the
lives of a small sample of this unique population (of which Fionn
is one). The group for whom we made the video were the 120
cyclists in the Tour de Munster, all of whom had raised funds
connected with the 4-day ride to benefit people with Down
Syndrome.
We thought it would be great to ask people a single question.
Fionn was the one who came up with the perfect question:
‘What do you love about your life?’ When we began to plan
the project, we realised that we didn’t want to exclude people
just because they couldn’t or wouldn’t speak on camera. So
we came to the solution that, whatever the answer might be
(sometimes voiced to us by a loved one of the interviewee),
we would film the person doing that thing. The film was well
received, and the next thing we knew, RTE was calling.
On RTÉ’s Saturday Night Show, Fionnathan were interviewed
and performed music in October of 2013. When he was asked
by the host, Brendan O’Connor, in front of a quarter million
viewers at home, ‘How does it feel to have Down Syndrome?’,
his reply was, ‘How does it feel to not have Down Syndrome?’
And Jonathan simply said that Fionn is more capable than him
in many areas of life, that dividing society into ‘disabled’ and
‘abled’ people is usually unhelpful, and that we are all made
‘able’ through sharing in and contributing to society.
In the last few months, we have begun to contract with other
organisations to collaborate on videos. In the spring of 2014 at
the Inclusion Ireland AGM, Fionn interviewed Minister of State
Kathleen Lynch and Pat Healy, National Director of Social Care
for the HSE. During the summer we completed a promotional
video for Down Syndrome Limerick, showing all the wonderful
types of support they offer families and individuals. And in the
early autumn we created a film for PossibilitiesPlus, featuring
four people who are self-directing their supports through
individualised funding. This video was premiered at the Merrion
Hotel, with TDs in attendance.
We’ve even had a bit of time in front of the camera on a
professional feature-length film. Fionn was invited to audition
for one of the main roles in Glassland, a production financed
by the Irish Film Board for international cinematic release. The
casting director liked the way he read for the part, then called
him back for a second reading with the director and lead actor.
We were a bit disappointed to hear that they chose another
young actor, but we didn’t give up. We asked if there was any
other job we could do, and we both landed parts as incidental
actors.
I don’t mean to suggest we’ve had nothing but successes
since starting this project—there have also been plenty of
Fionnathan Fails.
■ We lost out on any award in 2 of the 3 film festivals we have
entered thus far.
■ We didn’t win the large role in ‘Glassland’
■ We weren’t allowed to participate on the crew of ‘Before the
Boat’ (short film project) because of insurance issues.
■ We haven’t got to interview Christy Moore or Liam Neeson or
Michael D. Higgins (yet)
■ We didn’t get to join One Direction.
So, there have been plenty of letdowns. We just find that
optimism seems to be the best default position, and we keep
looking positively toward what is coming next around the
corner.
Why Fionnathan?
Busking is a very public activity, and you meet all kinds of
fascinating people. Although it’s wonderful when people
introduce themselves as someone with a family member who
has Down Syndrome, it’s just as wonderful when this aspect is
overlooked. One of my favourite moments was when a woman
came up as we were busking, and she said to Fionn, ‘I just
wanted to tell you how brilliantly you play, given the fact that
you are left handed.’
Primarily, we are doing this to win for Fionn a good life,
whatever that will prove to be. Along the way, we may learn
some things that could benefit others on their journey to find a
good life, and we’re happy to share what we learn.
When asked about Fionathan Productions and what he liked
about it, Fionn answered, ‘I really love this guy beside me and
he really backs me up and I am so proud to be his son.’ So, for
the time being, we’re both happy to see where this journey
takes us. This project may have a limited shelf life. The need
to allow space in Fionn’s life for more long-term relationships
to develop with same-age peers is a very important one. As
a family, we’ve applied for funding from the HSE for Fionn’s
individual plan, and hope to hire a young lad or two to help
him navigate more peer-based social situations. He attended a

youth film school during the summer, without a designated
supporter, and that was mostly successful.
Fionnathan exists to have fun and change the world, to
trouble your understanding of ability, to reveal superstars in our
midst, and to prove that, in fact, we are the people we’ve been
waiting for.
We share our stories of audacious creativity and abiding
optimism with the masses, opening one heart at a time.
Through music, live presentations, videos and visual arts, we
seek to collaborate with diverse people who are passionate
about what they do. We playfully engage with the world of
celebrity and pop culture. And we are seriously into social
justice and conserving natural habitats.
Three goals:
1. to win for Fionn an excellent life, while documenting and
sharing the journey,
2. to inspire and support other people in achieving their own
dreams, and
3. to shift the societal paradigm, so that unique and
alternately-gifted people are celebrated.
Through example, we show that the best way to support one
another is in loving interest: that’s how each one of us shines.
What Next?
As for the future, we plan to do multiple collaborative projects
to highlight the strengths of uniquely-abled people. We plan
to record a CD, collaborating with multiple musicians, to have
an art exhibition, and to publish a book telling the story of
Fionnathan. And speaking of art projects, we’ve just discovered
the Fab Lab in Limerick, where we can collaborate on laser
cutting and 3D printed sculptures. We are working on ‘What
Do You Love? The Celebrity Edition’. While completing the
first version, we realised that it would be fascinating to ask
this question of other interesting people. We started with Sean
Kelly, one of Ireland’s most famous and successful athletes. Next
were two talented Irish musicians, Ryan Sheridan and Damien
Dempsey. Then, we asked Fionn’s dentist, Michael Cronin. We
then brought our question to Conor Newman, archaeologist
and Head of the Irish Heritage Council. Doug Allan, BBC wildlife
photographer, was generous with his time and thoughts. This
was our first interview where Fionn followed up with other
questions. World-renowned Irish traditional violinist Martin
Hayes even played us a few tunes between questions.
Other interviews or meetings we have been fortunate enough
to have over the last year include actors John Hurt, Jack Reynor,
Cillian Murphy, Jared Harris, Jamie Harris, Will Poulter, Paul
Reid, Donal Gleeson, and Gabriel Byrne; film producers Juliette
Bonass and Noel Pearson; film directors Vivian Dick and Gerard
Barrett; BBC wildlife presenter Gordon Buchanan; horse trainer
Buck Buchanan; musicians John Sheahan, Iarla Ó Lionáird, Sam
Amidon, and Bill Frisell; US poet laureate Billy Collins; French
economist Thomas Picketty; and President Michael D. Higgins.
It’s been a busy year.
As well as continuing to give presentations sharing our
knowledge and love of wildlife and music to school children,
we will continue to share our story with family-based advocates,
college students and forward-thinking service professionals and
policy makers, both around Ireland and abroad. We have lots
of ideas for short film projects and a number of serial themes
for web or TV. One that we are in preparation for is called
‘Fionn Goes to Work’, where we will interview and spend the
day working with individuals in many different occupations, to
highlight the many kinds of work that people engage in, and
to help Fionn make a more informed choice about the type
of work he wants to strive for. We already have a soapmaker,
a farmer, a teacher, and a wildlife TV presenter on board.
Exciting stuff. If you have ideas, or would like to offer to
host Fionn for a day of interesting work, let us know.
And, if you’d like to stay informed and connected with our
future exploits, follow us on Facebook, Youtube or Twitter;
go to our website (search for Fionnathan, in each case); or
drop us a line at Fionnathan.Productions@gmail.com
F A M I L I E S

A BITTERSWEET ENDING: AGAINST ALL
THE ODDS
Marcella O’Sullivan tells the harrowing story of her brother Paul’s time in residential care and a lock-up institution
THIS IS A STORY with a bittersweet ending, the trials
and tribulations in life, power of control, the survival of
a vulnerable man and the journey that had to be taken
and the lessons to be learned. It’s a story about simple
skills such as listening, understanding, patience, trust,
honesty, observing and (most important) belief that took
so much courage, bravery and strength so his voice could
be heard, so he too could have a natural life with the
normal things most of us take for granted.
He will teach you that the small things in life can
mean so much, when value, kindness, respect, dignity,
worth, care and love are part of being seen for who you
are, and not the labels attached to you. He will also
teach you that it is never too late to learn new skills,
and that everyone is someone when given the right
opportunity. Most important, this story is about the roles
family have to take on, when someone has complex
needs.
As a society we are too quick to judge a book by
its cover. This is a voice for the voiceless in whatever
journey they are on because roads can be long and
winding, but persistence can help one discover who they
really are and why each journey is so important. We all
want to be seen for who we are, and grow to be who
we are meant to be. This story is all of that and more,
because love and family conquered the impossible and
broke down the walls, against all odds.
We all have a different make up; we look different, but
we all have the same mental, physical and emotional
needs. Just because one has a disability, it doesn’t mean
they are born without those same needs. We all laugh,
cry, hurt, have loss, and get physically sick at some point
in our lives. Whether you are non-verbal or have any
type of a disability, you still have the same needs—but as
a society we forget that.
We all have weaknesses and strengths; just because
you may have a disability does not change that either.
What a mainstream person may have in strength may
be the weakness for someone who has a disability, but
the strengths of someone with a disability may be the
weakness of someone in the mainstream. Mainstream
people may have more opportunities through education,
but they may have no experience of life and the
struggles encountered by someone with a disability.
All of us have a disability when facing new challenges
or learning new skills—that’s what someone with a
disability encounters every day. If opportunities aren’t
given to help manage the disability or to grow as a
person, that’s when life becomes a real struggle. People
like Paul can end up vulnerable and out-of-touch with
society and life itself.
So, I guess what I am asking is, SEE THE PERSON NOT
THE LABEL. When you see the person, the person grows.
When you see the label, the label grows. Society must
not disable people, but enable them to be all they are
meant to be. Remove limits by changing your mindset.
As I discovered, if those around someone with a
disability, have a mindset closed to change and to up-
skill themselves, and if they only believe in their way,
then the person with a disability, who has complex
needs and is reliant on those around them to help them
change and gain skills, has no chance to embrace life
and all it offers.
I guess the friendship of support staff is the vital part
of the story for someone with complex needs. Support
staff are the next thing to family. Again as a society, we
all choose our friendships. Someone with a disability
often doesn’t have that opportunity to choose, and
that is key: if the support is compatible, they will grow
together as individuals.

frontline97-digital-3

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