![28 FRONTLINE Winter 2015
FRONTLINE: REFLECTION ON THE
HARD-COPY YEARS
SO FAREWELL THEN, Frontline magazine as we know it. It
is twenty-five years since Frontline first saw the light of day
and in that period much has changed. People with intellectual
disability have moved out of congregated settings and into
‘ordinary’ houses. Many people have got jobs in shops, factories,
workshops and service industries all over the country. Also in
that time Ireland has become a multilingual, multiracial society.
In short, difference has thrived, and in that space people with
disabilities have become recognised to a great extent as the same
as everybody else.
It has now become commonplace that communities proudly
announce that they are inclusive, and within these places
people with intellectual disability find it possible to lead a more
fulfilling life. Most people do, but not all, because there is no
universal panacea for the legacy of the old institutions and the
old institutional ways of thinking that still cling on. But most
do live better lives, lives that they have more influence over and
lives that can be called lives of quality. To some extent I think
this is attributable to the Special Olympics of 2003—surely a
seminal event in the growing understanding of what inclusion
means in practice. Also it seems to me that Irish society has
opened up; it always was a welcoming society, but even more so
these days. Despite the pressure of the recession, Ireland remains
a place where people are welcome. Having acknowledged the
progress that has been made, the revelations of abuse that have
recently surfaced, and the general sense that HIQA inspections
have uncovered services that are imperfect at best, leave an
uneasy feeling.
However, I take the view that even the apparently incessant
bad news emerging from the intellectual disability services sector
holds a silver lining. I think, firstly, that most services are doing a
good job of providing quality and also that those that are not are
getting a severe reminder that poor service will not be tolerated
and, secondly, that those people who treat service users with
intellectual disability without kindness have no place working
with or being around them.
As editor of Frontline in the early years of the last decade,
I found that four times a year I was under pressure to
‘get the copy in’. This was perhaps easier for me as I was
working in the academic sector and academics love the
opportunity to get a publication out in the public arena
swiftly. Furthermore, they can write—after all, words are
their stock in trade. Since Stephen took over the editorship
Frontline,while retaining an academic focus, has become
more ‘people friendly’. This is a welcome development
as the involvement of people with intellectual disability
and their families has deepened and I think become more
influential.
Part of the vision of the editorial board was that a copy of
Frontline would be available in every centre, preferably in
houses and places where people with intellectual disability lived
and worked and spent their time. In other words, the magazine
would be ‘around’, people with intellectual disability, staff and
family members would be able to just pick it up, glance through
it, read an article if it interested them, or use it to light the fire
if not! In short Frontline could become like Hello magazine,
ubiquitous and influential on that account. I do not think that
this goal was ever fully achieved, certainly some centres and
services took multiple copies and spread them around, but
others kept them in libraries where they had to be sought out;
still others had never [and still have not] heard of Frontline.
What was Frontline? At its best, it was a source of information
and entertainment. It told what people with intellectual
disability, their families, those who worked to support them
and others were doing. It offered a kaleidoscopic perspective
on the issues of the time; hard-edged research co-existed with
reports of fun days out and garden fêtes. The achievement of
such an all-inclusive perspective was quite unique. In addition,
it provided a place for people with intellectual disability to tell
some of their stories, for their families to explain their joys and
sorrows, and for all to articulate their hopes for the future.
As a source of information Frontline was both very powerful
and at times quite patchy. As a space in which opinion about
the issues of the day in the sector in Ireland could be articulated
it had no equal. However, in the end I think Frontline was
essentially a place to meet one’s friends.
I will miss it as the magazine rides off into the sunset.
However,r the new digital dawn is upon us and Frontline,like
every other form of print media, has had to adapt. The new
format will be more flexible and hopefully more accessible,
even though we will have to access it from our phones, tablets
and whatnot. I think over the next 25 years, Frontline will be
equally as important as in the last 25. It will, in fact, be the
same but different.
Colin Griffiths looks back at twenty-five years of Frontline magazine in print.
F R O N T L I N E](https://image.slidesharecdn.com/34258aa7-3968-4d30-a7b8-fc1d10b07263-150805094138-lva1-app6891/85/frontline97-digital-3-28-320.jpg)
![29FRONTLINE Winter 2015
FRONTLINE: LOOKING BACK
THIS FINAL PRINT-ISSUE of Frontline marks 25 years
of publication—a total of 97 issues of the magazine! In
the spring of 1989, as people entered the Brandon Hotel
in Tralee for the AGM of NAMHI, two gentlemen were
making a pitch for a new magazine called Frontline. Over
the previous six months, John Saunders, Tony Darmody,
Patrick McGinley, Chris Conliffe, Seamus Dunne, Patricia
Walsh and Bob McCormack had worked with publisher
Nick Maxwell of Wordwell to bring Frontline into being.
They had determined that there was a need for an Irish
magazine that would:
■ ‘meet the needs of frontline workers and parents;
■ report on major research areas which are of interest to
staff and parents, in a readable, intelligent way;
■ report on “good practice” in service developments in
such a way as to facilitate others implementing it in
their own service setting;
■ describe the real situation, even if this entailed
controversy;
■ adopt an independent advocacy role in relation to
people with a mental handicap [sic] and their families.
This would include material written or co-written by
clients and material written for more able clients;
■ encourage acknowledgement of the limitations and
problems of new developments or approaches, as well as
describing the successes.’
It is a little ironic to read the ‘market penetration’ hopes
held by that first editorial team: ‘Most staff do not read. A
proportion of parents are reading avidly, seeking practical
help in working with their child. The total market is about
30,000 families and 5000 staff and ... agencies ... might
be willing to circulate a flyer to members of their parents
and friends association.... Libraries and consultation
waiting rooms are another potential market, including
libraries outside Ireland.’ Frontline did become established
in a vital, if modest, niche in the Irish learning disability
community, and it has managed to continue in that role
for a quarter of a century—but its market penetration
never developed beyond a few hundred subscribers, made
up of service organisations, individual professionals and
families.
The content of Frontline has always been overseen by
a voluntary editorial board, members who are, like the
readers, professionals, frontline workers and parents. Some
have been able to give their time to the magazine for two
or three years; others have stayed involved for over twenty.
Seven editors have successively taken on the responsibility
of getting 32 pages ready for the designer and printer four
times each year. (Doing the sums, one can see that there
were only three glitches in meeting those deadlines during
the 25 years.)
For all of its first two decades, Frontline was published by
Nick Maxwell and Wordwell. Nick worked patiently with
successive editors, demanding 32 readable pages, maybe a
little controversy occasionally, and more pictures please.
He and his staff always managed to slot us in between
the production deadlines of his higher-profile magazines
and book publishing. He was never forthcoming with
detailed accounts, but we all knew there was loss, rather
than profit, in the ledger. Finally, in 2009, he suggested we
should take control of our own affairs, and the members
of the editorial board established a not-for-profit company,
‘Frontline Magazine Limited’. Fortunately, we were able to
call on the design services of Niamh Power for a further
three years, and she led us to our current designer Niall Ó
Laoghaire—who is now helping to bring the magazine into
the new era.
After 25 years, Frontline will now adapt to the all-
embracing world of the internet at our fingertips and social
media giving instant communication and feedback. Those
of us who still prefer paper-page reading to screen-scrolling
will understandably regret the loss of the print magazine—
and we apologise for that. But production/printing
costs for small-run magazines have become prohibitive.
However, Frontline will be able to engage much more fully
with our Irish (and international) intellectual disability
community in an online format.
I’m still pretty much a twentieth century person—
fifteen years into this scary century, I’ve only had my
smarter-than-me Samsung mini mobile phone for a few
months. New editorial board members will be able to bring
about the changes necessary for an up-to-date and more
interactive magazine—I, and I hope all our readers, wish
them every blessing in the work.
(If you can offer your skills to Frontline, please, please contact
our editor Stephen Kealy.)
Mary de Paor looks at the early years of Frontline and has a peep at the future in its new online incarnation.](https://image.slidesharecdn.com/34258aa7-3968-4d30-a7b8-fc1d10b07263-150805094138-lva1-app6891/85/frontline97-digital-3-29-320.jpg)
frontline97-digital-3
- 1. DUNDALK FC — FRONTLINE IN PRINT — HEART SURGERY FRONTLINE Volume 97 ● Winter 2015 THE IRISH VOICE FOR INTELLECTUAL DISABILITY FAMILIES
- 2. 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
- 3. 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 Frontline Magazine Ltd. is a ‘not for profit’ organisation, formed solely to publish the magazine Frontline. Copyright resides with the individual authors, but permission to reproduce any article must be obtained in writing from Frontline. Views expressed in Frontline are those of the authors themselves and not nec- essarily those of the editor or editorial board. Letters to the editor are welcomed. Name and address should be provided; they will be published unless otherwise requested. Articles may be submitted for possible publication in Frontline. Guidelines for authors are available from the editor. Items on meetings, conferences etc. should be submitted well in advance of events, to meet the magazine publica- tion schedule. Frontline editorial address for letters, articles and other items for inclusion: Frontline Magazine Ltd. Unit C2, The Steelworks Foley Street, Dublin 1 E-mail: editor@frontline-ireland.net Website: www.frontline-ireland.com 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. 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
- 5. 5FRONTLINE Winter 2015 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
- 6. 6 FRONTLINE Winter 2015 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
- 7. 7FRONTLINE Winter 2015 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
- 8. 8 FRONTLINE Winter 2015 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.’
- 9. 9FRONTLINE Winter 2015 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
- 10. 10 FRONTLINE Winter 2015 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.
- 11. 11FRONTLINE Winter 2015 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.
- 12. 12 FRONTLINE Winter 2015 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
- 13. 13FRONTLINE Winter 2015 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.
- 14. 14 FRONTLINE Winter 2015 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
- 15. 15FRONTLINE Winter 2015 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.
- 16. 16 FRONTLINE Winter 2015 ‘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
- 17. 17FRONTLINE Winter 2015 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.
- 18. 18 FRONTLINE Winter 2015 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
- 19. 19FRONTLINE Winter 2015 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
- 20. 20 FRONTLINE Winter 2015 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
- 21. 21FRONTLINE Winter 2015 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.
- 22. 22 FRONTLINE Winter 2015 F A M I L I E S PAUL IS A 47-YEAR-OLD non-verbal man. As his sister, three-and-a-half years younger, I have became his voice over time. Together we took a journey, for Paul to be heard and to be seen for more than just his labels. His life journey shows his strength to survive in any situation. Paul went to a special school in Cork because he wasn’t able to fit into the mainstream sector. But teachers didn’t understand him; he was the bold child who got bored easily and caused disruption in the classroom. So at eight, he was moved to a place ‘that would understand his needs better’. But within a short period Paul started to regress. No explanation was given to him; he was now living in a residential school, away from home, with others he didn’t know. He came home every second weekend and for short period at holiday times, but the institutional setting began at that point. I even remember as a little girl going to collect Paul, putting my face up to a glass door trying to see how he was. Even then I had a strong intuition that it was wrong for Paul, and that they didn’t understand him. Paul never learned to read or write, and he lost the words he had once had. Boredom was always an issue. He developed ‘challenging’ behaviours and by the time he was coming into adulthood, the only place available to him was the psychiatric sector. Paul was on a cocktail of medication by the age of 17 years. Nothing was ever explained to him— he was just landed in the settings. At 18 years old, he was in a lock-down, high-security unit in Cork. As his sister, again reflecting back to me as a youngster, he was someone who knew words would never help him in the settings where he was. He showed his annoyance and frustration in behaviour—the only way he could communicate. His behaviour came out of frustration—and he was given the diagnosis of challenging and self-injurious behaviour. Paul was stated to have mental retardation—over time the term changed to ‘mental handicap’, to handicap, and today it’s known as ‘intellectual disability’. I believe that with no real intervention, apart from medication, from the age of eight, Paul communicated quite loudly about his dissatisfaction of where he was. Watching him from young boy to adulthood, I saw Paul change and the person he had been disappear. He wasn’t being heard and the more he behaved badly, the more medication he got. He had no voice; professionals deemed that the best place for him was in a psychiatric setting. I often hear that ‘that was the way it was back then’, and ‘it was the only answer they had.’ Maybe so, but does that let people off the hook so easily? ‘Back then’ is still very much the recent past for Paul’s journey. Over the years Paul came home less frequently. For many years I didn’t know where he had gone. In the late 1980s, Paul ended up in the Cork Regional Hospital with a burst appendix. Not much was said to me, as the youngest sibling (also ‘seen and not heard’). I know I did ring the hospital, but because I was under 18, I was ignored. Later, in 1990 I found out where Paul was and I got the courage to go to see him. I knew it was right thing to do, and that it wouldn’t be a welcome visit. I rang the bell and I must been waited over half hour before they brought Paul out. The man I expected to see was not the man standing in front of me. He was frail, sedated and a very frightened. But what struck me was that he recognised me, and for a fraction of a moment, he allowed me to see that he was ‘still in there’. That day I made him a promise I would do everything I could to help him to have the life he deserved. I had no idea how I was going to do it, but I knew I would someday. Over the following years I continued to see Paul. It took me five years to get him to the front door of the place, the fear of the outside world was so frightening to him. Paul was then in his mid-twenties, 4ft 10inches, weighing about 6 stone. Any time I saw him he was so sedated, he could hardly walk. Two staff members brought him out—men over 6ft tall. What a contrast! I slowly started to question things, but always the situation was defended. I could see intimidation from the front door, so I definitely questioned the level of control and intimidation inside. It was like Paul was living in a prison. In 2001, I was finally able to speak up on Paul’s behalf. When I called one October weekend, PAUL arrived with infected wounds on his face, with half his ear gone and his cheek bones protruding clearly in his face. I was told he had received antibiotic treatment the month before, and didn’t require any more. Paul’s hands were blown up like balloons from being tied behind his back—‘for his protection’, I was told. His weight had dropped further, and he was in nappies. Paul looked extremely unwell and nothing was being done. By then he was over 30 years old, and although I had no idea what to do, I knew I couldn’t just walk away and say nothing. I went to an MEP who understood that the situation was as serious as I did. She came with me to see Paul and she sat on the floor crying with him, while two staff members held him down during our visit. We both went to the Minister for Education at the time and he told me: ‘I know it is hard, but accept the situation and move on.’ He admitted that the photographs were hard to look at, but there was nothing he could do. I went to the Minister for Health, and he didn’t even know where the place was. I put an article in the paper in December 2001 and, finally, that sparked serious interest in Paul’s health. I spoke on radio stations about the situation and it was always only about how Paul had no voice to describe the place he was in and his life. Paul was finally seen by a specialist; He had thread worms and he was ulcerated from the back of his throat the whole way to his bowel. Can you imagine the pain he was in? Even today he has a huge scar on his face and also half his ear is gone, as well as the scar from his burst appendix –all reflect that time. I believe my intervention saved Paul’s life, because with the huge amount of medication he was on, his terrible physical condition would have been unnoticed until it was too late. He was in a lock-in situation and there were no external checks on how the place was run. Over the next 18 months, meetings began and professionals were brought in to see what might be done for Paul. In May 2003 I was asked to step back and allow the HSE to do their job and follow the recommendations given to help Paul. I knew leaving that day that nothing would be followed through if the spotlight were removed. Within six months all of the planned changes were stopped and the recommendation for Paul to leave within 18 months didn’t happen. So his voice was quietened, I was silenced and the old routines continued. I continued to visit Paul, to watch and observe both him and the place he had to call home. Paul would come
- 23. 23FRONTLINE Winter 2015 out dirty, and in clothes 2-3 times too big for him. All I ever heard was that Paul was to blame for all of it, with no acceptance of responsibility by the staff. There were up to thirty inmates at any time, all with varying psychiatric needs, and only medication as an intervention. Most of the inmates had an intellectual disability which added to the difficulty in understanding their individual needs. All the staff had psychiatric training, but none had intellectual disability training; I could see problems without ever understanding anything about how the system worked. In 2005 I stopped listening to everyone else and began to hear Paul. He needed someone to listen to him, and even after all the case conferences, I wasn’t listened to either, as his sister. I continued to observe the place, but Paul needed me to believe in him and his voice, so I began to educate myself. I studied about special needs, ABA, and about Paul’s medication. I started to bring Paul to my home in Ennis, to get a clearer picture of who he was—without all the labels. Staff had tried to make me be afraid of Paul, but I can truly say I never felt threatened or afraid of him. I got to know Paul , and although I knew the journey was going to be hard, I knew we would get there. More problems became evident in the place Paul lived— he would have bruising on backs of his legs, his face, continuous gashes to his head and black eyes. When I questioned his presentation, the intimidation I encountered for looking out for the welfare of my brother and the care he was encountering, was far from pleasant. In 2008, I ended up taking the case to the Equality Authority for Paul’s human rights to be heard. In the meantime, during his visits to Ennis, I had come to understand Paul’s ways of communicating without words. He used his hands and thumbs to indicate different things, and I learned about the side effects of his medication. Slowly he began to relax more—as he learned that he could trust me and that was listening to him. I learned different strategies to help eliminate Paul’s stress slowly he began to grow and show that his spirit was still very alive. I started from when I had known Paul as the little boy, not the adult with the labels. I had to become his voice, psychologist, behaviourist, carer, sister, family, tutor and mentor, salt, o.t. and every other role he needed. But , the most important thing was that Paul was still the person I remembered, and I knew there was a lot more to him than met the eyes. Despite the many challenged we experienced, really all he needed was the right person with the right support to help him communicate without words. I became his multidisciplinary team, so he could move forward. Once again we had to publicise the continuing problems at his care-institution. The Equality Authority listened and an investigation was carried out, with more recommendations. But in 2010 and 2011 things got very serious: head gashes, epileptic seizures, rapid changes in medication, medication not given when he was coming out for weekends, blows to his face and not being told of incidents, 22 staples to his head, 18 teeth extracted. One staff member said to me that Paul would be killed in there if something wasn’t done. No one has been held accountable for any incidents and reports didn’t reflect the truth of what had happened. I was under great stress and worry, trying to protect Paul in that setting—with their word against mine. According to them, Paul was receiving the best of care. I was dealing with intimidation, as much as PAUL was. Many weekends I found it hard to go to Cork, but I knew that once I had started this journey in 2007 there was no stopping until Paul was safe. I heard that staff were suffering from the stress I was causing. The sarcasm in Paul’s files made unpleasant reading, but I continued to document what I saw. Money was provided to ‘do up’ the place, but no one dealt with the problems of care. I reported an incident to the Guards three times, before anything was written down—and still nothing came of it. I was shown many places that Paul could transfer to, but nothing seemed different from where he was. I believed Paul
- 24. 24 FRONTLINE Winter 2015 F A M I L I E S deserved a home of his own, not just a building, but a home life. I wanted Paul moved to Ennis, closer to where I lived, nearby if anything happened to him. Paul finally received an appropriate diagnosis: autism, with sensory and environmental overloads. In November of 2013, after eight years in residential care as a child and 31 years in a lock-up institution, Paul finally left institutional care. He now lives in his own home with support staff. All the one-on-one work I had in place has been transferred into the service. His communication methods are finally seen for what they are, and understood. He no longer closes himself off and the intense tension he had in his body is gone. He knows as long as I am near, he will always be safe. Supporting staff are very aware of his past and triggers, so he can stay in the moment and look to a bright healthy future. He is slowly gaining back his identity and going forward independently. His clothes do not have name labels on them; no one else wears his clothes. His environment is suited and adapted to his needs. He is supported to maintain his own home and to learn the skills of personal hygiene, laundry, cooking, cleaning, paying bills and he is becoming integrated into his community and meeting new friends. He is beginning to understand about his own money, having treats like hot chocolate or ice cream, etc. He has a passport, travel pass, bank account—all in his own name as an independent individual. Paul has grown a lot in the short space of one year. The self-injurious behaviour strategies he had adopted to survive are now much reduced and he is embracing a life with both quality and quantity in it. Paul is growing into the man he is meant to be and no longer lives in fear. He has begun to hum to music and is slowly learning some sounds to mean yes or no. So again nothing is impossible and he may finally believe he truly has something to say in words because he knows it will be listened to. Paul still has a lot of learning to do, but he can do a lot of teaching. After all our journey together, Paul has shown that it is never too late to change and learn new things. He was a determined man who wanted to be heard. Now, I can watch him from a distance, seeing him grow in independence because his voice is finally heard by those who support him. When he needs me to support him, I will stand beside him and we do it together and when he needs a speaking voice, I will speak on his behalf. I knew that I was taking huge risks in speaking up for Paul along our long journey. But I had made a promise to him and I had to keep it. There is no justice for those who are vulnerable in care; even though Paul’s injuries spoke a thousand words, but they were not enough. I know some people are fearful of HIQA coming in, but something is needed to protect all the Pauls of this world. At least HIQA is one safeguard. Families should not be discriminated against for speaking out about inadequacies in the care of their family member. Doctors need to listen to families—they know their child or sibling. Organisations need to welcome and listen to families, not push them away. For society to change, we need to LISTEN.
- 25. 25FRONTLINE Winter 2015 OLDER PEOPLE WITH A LEARNING DISABILITY: ARE THERE FAMILY-FRIENDLY OPTIONS IN CARE DELIVERY? Introduction Watchman (2014) summarises some of the dilemmas encountered when making decisions about the care of people with learning disability and dementia. In this article I will discuss older people with a learning disability with and without dementia. Referrals to generic services such as nursing homes can also take place when the individual’s physical health needs exceed the capacity of the current care giver(s), regardless of the diagnosis. This, coupled with the increasing life expectancy of the general population (including citizens with a learning disability), suggests that the debate in relation to supporting this subset of population is one which will be ongoing. In this article I am keen to discuss the idea that the three options of care for older people with a learning disability outlined below can be more closely linked, rather than being separate entities. Furthermore, these options can be considered with reference to reducing the risk of social isolation and disruption to contact with relatives and loved ones. One potential proposal is the idea of ‘inreach’ into nursing homes to ensure a good quality of care and subsequently a good quality of life for service users. The inreach role can play a significant advocacy role in relation to clinical aspects, in addition to identifying communication issues and any barriers there are to meaningful social interaction. A vignette will hopefully help illustrate this further. Community learning disabilities teams can provide a central link role between the 3 options. The discussions around where best to care for older people with a learning disability have understandably focused on the area of dementia. The international debate around general or specialised care for people with a learning disability and dementia began in the 1990s with the work of Janicki and Dalton (1999), which coincided with the increase in awareness and knowledge of the link Down Syndrome and early dementia. Janicki and Dalton considered three options: ageing in place, in-place progression, and referral out. Ageing in place Many people with a learning disability have existing support networks. Janicki and Dalton (1999) referred to a person with a learning disability and dementia remaining in their own home environment, with adaptations, after a diagnosis of dementia as ‘ageing in place’. This includes: 1. Introducing staff training on dementia, such as the importance of orientation work. 2. Environmental adaptations to address the effects of dementia such improving accessibility. This can take place in a residential or family home. Watchman highlights the significant issue of lack of support for family carers (Gilbert et al 2004, Watchman 2004) which leads to isolation and a feeling that more expert care is required. Watchman also identifies research to outline the positive aspects of ageing in place. Given that people with a learning disability often find change very difficult and are exposed to significant change in their lifetime, clearly an option which prevents a change of living environment is an attractive one. This is also an option which ensures minimal disruption to family contact. In-place progression The 2nd option in Janicki and Dalton’s model for people with a learning disability and dementia is ‘in-place progression’ (Janicki and Dalton 1999). This refers to a move to, or creation of, a dementia-specific environment for people with a learning disability. Watchman states that it is the option least often seen. Absence may be due to care providers not being equipped or financed to adapt premises in order to accommodate people with a learning disability and dementia. Referral out The third option ‘referral out’ involves a move for the person with a learning disability to a generic social care environment usually a nursing home. Watchman outlines Evan Yacoub looks at the improvements that will have to be made in the care of patients who have an intellectual disability and dementia or other age-related diseases.
- 26. 26 FRONTLINE Winter 2015 F A M I L I E S research questioning the suitability of such a model (Michael and Richardson 2009). An important factor is the pre-existing difference in communication between those with, and those without, a learning disability. In an environment where staff-to-service user ratios can be low, not having the ability to make one’s needs heard can be a huge issue. Other considerations, such as the lack of a peer group and social activities not being pitched at a suitable level, can also impact on the quality of the placement. Furthermore, nursing homes maybe geographically located in places where it is difficult for relatives to visit the service users. Thompson and Wright (2001) noted the frequent inappropriate placement and referral out of people with learning disabilities to generic older people’s services. This can sometimes happen as an emergency, but as Hussein and Manthorpe (2005) state, it can also happen, for example, because of hospital closures. Inreach In my current role, I provide learning disability psychiatry input into two counties in Ireland and there are more than 20 service users with a learning disability placed in nursing homes. In some cases this was the service user’s choice, or the preference of the family, but in the majority of cases it was the result of the physical health needs overwhelming local services. A typical example would be where more than two staff are required to turn the service user to prevent bedsores, which would lead to the community placement breaking down. Ageing in place and in-place progressions are aspirations for local services. Dementia training is a priority and there is a proposal to set up a joint local facility with the team for mental healthcare of older people. The community learning disability service can provide a central link in coordinating such placements, providing an array of care options. However given the number of existing nursing home placements and the possibility of more referrals taking place, it has been important to start to set up an inreach service with four major functions: 1. A psychiatric assessment and treatment service for service users with or without dementia in nursing homes. 2. A health advocacy role to ensure that service users’ physical health needs are adequately addressed, an often neglected area (Michael and Richardson 2008). 3. A social advocacy role to ensure that social communication issues, for example, do not negatively impact on the service users’ ability to integrate into the nursing home environment. 4. A training and education role, which can be informal through meetings with staff or formal by inviting nursing home staff to learning disability-specific training. The aim is to use HIQA (2013) standards as a template for the inreach service. HIQA is a regulator of community learning disability services in Ireland. By addressing these areas, covered amongst numerous others by the HIQA standards, it is envisaged that some of the challenges encountered in generic environments by people with a learning disability can be overcome. Vignette A service user’s physical health needs exceeded the capacity of local services due to the number of people required to turn her to prevent bed sores and to ensure that she was able to leave her bedroom. An exploration was carried out by the local community learning disabilities’ team jointly with the family, looking to identify the most accessible nursing home for the family members to visit. Multidisciplinary staff continued to be involved in an inreach capacity to ensure that nursing home staff were familiar with the specific needs of the service user, and that every effort was made to facilitate positive contact with family members. Given that some of the family members visiting were children, it was felt that contact outside of the nursing home would be preferable on occasion. A timetable was drawn up to ensure that the service user was dressed and sitting in communal areas for significant periods every day. This reduced isolation, and made it easier for relatives to go out with the service user, therefore maintaining a good quality of life. It was highlighted to nursing home staff that the service user’s communication difficulties could easily lead to her needs to spend time with others not being seen as a priority. Summary Keeping service users in environments familiar to them when their needs change, or upgrading their environments to meet their emerging needs, should be the gold standard for older people with a learning disability. However, if referrals to generic environments take place, it is important to support such placements and the service users to ensure good quality care and quality of life. A vital aspect of a good quality of life is maintaining positive contact with families, relatives and loved ones. Community learning disability teams can play a coordination role regardless of which option is chosen. References Gilbert, T. 2004 Involving people with learning disabilities in research: Issues and possibilities, Health and Social Care in the Community 12 (4), 298-308. HIQA 2013 National quality standards: Residential services for adults and children with disabilities, 2013. Hussein, S. and Manthorpe, J. 2005 Older people with learning disabilities: Workforce issues, Journal of Integrated Care 13 (1), 17-23. Janicki, M.P. and Dalton, A. (eds) 1999 Dementia, aging and intellectual disabilities: A handbook. Philadelphia: Brummer/Mazel. Michael, J. and Richardson, A. 2008 Healthcare for all: The independent inquiry into access to healthcare for people with learning disabilities, Tizard Learning Disability Review 13 (4) 28-34. Thompson, D. and Wright, S. 2001 Misplaced and forgotten? People with learning disabilities in residential services for older people. London: Mental Health Foundation. Watchman, K. 2014 People with a learning disability and dementia: Reducing marginalisation Australian Journal of Dementia Care 2 (6), 31-4.
- 27. 27FRONTLINE Winter 2015 DOWN SYNDROME AND HEART SURGERY I HAVE BEEN VERY PRIVILEGED over three decades of professional life to treat many babies and children with Down Syndrome. Down Syndrome occurs approximately one in every 650-1,000 live births. Congenital heart disease occurs in approximately 40% of these individuals, predominantly ‘pink’ as against ‘blue’ ‘Pink’ congenital heart disease occurs from a left to right shunt, when there is a communication from the high (left) pressure side of the heart, to lower (right) pressure side. This then results in excessive flow through the lungs compared to the systemic circulation. Because of this excessive flow through the lungs, the babies frequently develop high-output heart failure, failure to thrive, get repeated respiratory tract infections and rapidly develop pulmonary hypertension. This is a condition where the blood vessels of the lungs react to the excessive blood flow and attempt to control it by going into spasm which, after a period of time, becomes permanent. When this occurs, the babies come out of heart failure and start to thrive, but their overall life expectancy is then reduced significantly to between 15 and 25 years approximately— maybe a little longer with present medication. Children with Down Syndrome develop pulmonary hypertension more quickly than children in the general population, usually at around 12-15 months, and it can become permanent from 18 months (generally). As a consequence, these babies need surgery/intervention anywhere from 4 months of age to 1 year, in order for them to have the same life expectancy as children with Down Syndrome who do not have heart disease. The conditions which cause this are Patent Ductus Arteriosus (PDA), Ventricular Septal Defect (VSD), Partial Atrio Ventriculo Septal Defect (PAVSD) and Common Atrio Ventriculo Septal Defect (CAVSD). PDA can be very effectively treated in the catheter Lab by device closure or by surgery. Both are equally effective and safe. Surgery is now reserved for babies weighing less than 10 kgs, or who have a very large duct that requires surgical division. Once treated, it is rare for any other intervention to be required. VSD requires open-heart surgery, usually between 6 months and 1 year. The VSD (hole between pumping chambers) is patched with a cloth (usually dacron) operating through the atrium when the heart is stopped. It is successful in 99% of babies and they survive to become normal. 1 % may require a pacemaker. No further surgery is usually necessary. Partial AVSD is a more complex defect made up of a hole (ASD) between the collecting chambers (atria) and a cleft left atrio ventricular valve (mitral). Again, this is an open-heart operation., The ASD is patched, usually with pericardium from the sac outside the heart, and the valve cleft is sown up/repaired. This again is a very safe operation, with 99% of babies surviving. 1% may need a pacemaker at some stage. Some 2-5 % may require a reoperation either for patch dehiscence or continued leak of the mitral valve. Lastly, the most complex of the heart conditions which infants with Down Syndrome may have is complete AVSD. This involves an egg-shaped defect at the base of the heart, resulting in an ASD, VSD all as on hole and clefts in the left AV (mitral) and right AV (tricuspid) valves making the valves ‘common’. All of this results in a ‘torrential’ left- to-right shunt and consequent heart failure. This defect is more common among children with Down Syndrome than in the general population. Indeed, it is the commonest congenital heart defect in Down Syndrome. Repairing the defect requires quite complex open-heart surgery. The left AV (mitral) valve has to be reconstructed, the VSD patched, the ASD patched and, frequently, the right AV (tricuspid) valve repaired. The surgeon is operating close to the conduction (pacemaker). The survival rate for this procedure is approximately 96-97%. A pacemaker may be necessary in 2-3 % of those affected. Reoperation for a leaking mitral valve is required in 5-6 % of cases, over 3-10 years. The vast majority recover very well and have a life expectancy of 50- 65 years. It is not known what exactly will happen with the left AV (mitral) valve, as it is quite mis-shapen compared to normal. There is some evidence that these valves may need to be replaced when the individual reaches their late twenties or early forties, however this may only become clear in the next 10-15 years. It has been most rewarding that all the children who have had surgery have reached their milestones, as if they had no heart disease. Indeed, 30 years ago, this surgery was not offered to babies with Down Syndrome because of what was considered very high risk. Having pioneered it in the 1980s, it is very rewarding to see so many thriving, from a cardiac point of view, and that it is now standard to offer this surgical treatment to all children with Down Syndrome. Lastly, I have found it remarkable how the boys and girls with Down Syndrome have become the centre of their family’s life, binding everyone together. Freddie Wood explains in detail the various heart conditions that can affect those with Down Syndrome. H E A R T S U R G E R Y
- 28. 28 FRONTLINE Winter 2015 FRONTLINE: REFLECTION ON THE HARD-COPY YEARS SO FAREWELL THEN, Frontline magazine as we know it. It is twenty-five years since Frontline first saw the light of day and in that period much has changed. People with intellectual disability have moved out of congregated settings and into ‘ordinary’ houses. Many people have got jobs in shops, factories, workshops and service industries all over the country. Also in that time Ireland has become a multilingual, multiracial society. In short, difference has thrived, and in that space people with disabilities have become recognised to a great extent as the same as everybody else. It has now become commonplace that communities proudly announce that they are inclusive, and within these places people with intellectual disability find it possible to lead a more fulfilling life. Most people do, but not all, because there is no universal panacea for the legacy of the old institutions and the old institutional ways of thinking that still cling on. But most do live better lives, lives that they have more influence over and lives that can be called lives of quality. To some extent I think this is attributable to the Special Olympics of 2003—surely a seminal event in the growing understanding of what inclusion means in practice. Also it seems to me that Irish society has opened up; it always was a welcoming society, but even more so these days. Despite the pressure of the recession, Ireland remains a place where people are welcome. Having acknowledged the progress that has been made, the revelations of abuse that have recently surfaced, and the general sense that HIQA inspections have uncovered services that are imperfect at best, leave an uneasy feeling. However, I take the view that even the apparently incessant bad news emerging from the intellectual disability services sector holds a silver lining. I think, firstly, that most services are doing a good job of providing quality and also that those that are not are getting a severe reminder that poor service will not be tolerated and, secondly, that those people who treat service users with intellectual disability without kindness have no place working with or being around them. As editor of Frontline in the early years of the last decade, I found that four times a year I was under pressure to ‘get the copy in’. This was perhaps easier for me as I was working in the academic sector and academics love the opportunity to get a publication out in the public arena swiftly. Furthermore, they can write—after all, words are their stock in trade. Since Stephen took over the editorship Frontline,while retaining an academic focus, has become more ‘people friendly’. This is a welcome development as the involvement of people with intellectual disability and their families has deepened and I think become more influential. Part of the vision of the editorial board was that a copy of Frontline would be available in every centre, preferably in houses and places where people with intellectual disability lived and worked and spent their time. In other words, the magazine would be ‘around’, people with intellectual disability, staff and family members would be able to just pick it up, glance through it, read an article if it interested them, or use it to light the fire if not! In short Frontline could become like Hello magazine, ubiquitous and influential on that account. I do not think that this goal was ever fully achieved, certainly some centres and services took multiple copies and spread them around, but others kept them in libraries where they had to be sought out; still others had never [and still have not] heard of Frontline. What was Frontline? At its best, it was a source of information and entertainment. It told what people with intellectual disability, their families, those who worked to support them and others were doing. It offered a kaleidoscopic perspective on the issues of the time; hard-edged research co-existed with reports of fun days out and garden fêtes. The achievement of such an all-inclusive perspective was quite unique. In addition, it provided a place for people with intellectual disability to tell some of their stories, for their families to explain their joys and sorrows, and for all to articulate their hopes for the future. As a source of information Frontline was both very powerful and at times quite patchy. As a space in which opinion about the issues of the day in the sector in Ireland could be articulated it had no equal. However, in the end I think Frontline was essentially a place to meet one’s friends. I will miss it as the magazine rides off into the sunset. However,r the new digital dawn is upon us and Frontline,like every other form of print media, has had to adapt. The new format will be more flexible and hopefully more accessible, even though we will have to access it from our phones, tablets and whatnot. I think over the next 25 years, Frontline will be equally as important as in the last 25. It will, in fact, be the same but different. Colin Griffiths looks back at twenty-five years of Frontline magazine in print. F R O N T L I N E
- 29. 29FRONTLINE Winter 2015 FRONTLINE: LOOKING BACK THIS FINAL PRINT-ISSUE of Frontline marks 25 years of publication—a total of 97 issues of the magazine! In the spring of 1989, as people entered the Brandon Hotel in Tralee for the AGM of NAMHI, two gentlemen were making a pitch for a new magazine called Frontline. Over the previous six months, John Saunders, Tony Darmody, Patrick McGinley, Chris Conliffe, Seamus Dunne, Patricia Walsh and Bob McCormack had worked with publisher Nick Maxwell of Wordwell to bring Frontline into being. They had determined that there was a need for an Irish magazine that would: ■ ‘meet the needs of frontline workers and parents; ■ report on major research areas which are of interest to staff and parents, in a readable, intelligent way; ■ report on “good practice” in service developments in such a way as to facilitate others implementing it in their own service setting; ■ describe the real situation, even if this entailed controversy; ■ adopt an independent advocacy role in relation to people with a mental handicap [sic] and their families. This would include material written or co-written by clients and material written for more able clients; ■ encourage acknowledgement of the limitations and problems of new developments or approaches, as well as describing the successes.’ It is a little ironic to read the ‘market penetration’ hopes held by that first editorial team: ‘Most staff do not read. A proportion of parents are reading avidly, seeking practical help in working with their child. The total market is about 30,000 families and 5000 staff and ... agencies ... might be willing to circulate a flyer to members of their parents and friends association.... Libraries and consultation waiting rooms are another potential market, including libraries outside Ireland.’ Frontline did become established in a vital, if modest, niche in the Irish learning disability community, and it has managed to continue in that role for a quarter of a century—but its market penetration never developed beyond a few hundred subscribers, made up of service organisations, individual professionals and families. The content of Frontline has always been overseen by a voluntary editorial board, members who are, like the readers, professionals, frontline workers and parents. Some have been able to give their time to the magazine for two or three years; others have stayed involved for over twenty. Seven editors have successively taken on the responsibility of getting 32 pages ready for the designer and printer four times each year. (Doing the sums, one can see that there were only three glitches in meeting those deadlines during the 25 years.) For all of its first two decades, Frontline was published by Nick Maxwell and Wordwell. Nick worked patiently with successive editors, demanding 32 readable pages, maybe a little controversy occasionally, and more pictures please. He and his staff always managed to slot us in between the production deadlines of his higher-profile magazines and book publishing. He was never forthcoming with detailed accounts, but we all knew there was loss, rather than profit, in the ledger. Finally, in 2009, he suggested we should take control of our own affairs, and the members of the editorial board established a not-for-profit company, ‘Frontline Magazine Limited’. Fortunately, we were able to call on the design services of Niamh Power for a further three years, and she led us to our current designer Niall Ó Laoghaire—who is now helping to bring the magazine into the new era. After 25 years, Frontline will now adapt to the all- embracing world of the internet at our fingertips and social media giving instant communication and feedback. Those of us who still prefer paper-page reading to screen-scrolling will understandably regret the loss of the print magazine— and we apologise for that. But production/printing costs for small-run magazines have become prohibitive. However, Frontline will be able to engage much more fully with our Irish (and international) intellectual disability community in an online format. I’m still pretty much a twentieth century person— fifteen years into this scary century, I’ve only had my smarter-than-me Samsung mini mobile phone for a few months. New editorial board members will be able to bring about the changes necessary for an up-to-date and more interactive magazine—I, and I hope all our readers, wish them every blessing in the work. (If you can offer your skills to Frontline, please, please contact our editor Stephen Kealy.) Mary de Paor looks at the early years of Frontline and has a peep at the future in its new online incarnation.
- 30. 30 FRONTLINE Winter 2015 Disability Psychotherapy Ireland Interest Group In association with the Irish Institute of Psychoanalytic Psychotherapy Email: admin@disabilitypsychotherapyireland.com Address: 107 Lower Baggot Street, Dublin 2. Tel: 087 4120758 Spring/Summer Series DISABLED ORGANISATIONS: A psychoanalytic perspective Work in the area of Disability Psychotherapy is relatively new in the Irish Health System and generally focused within services with a small number of therapists in private practice offering psychotherapy to this client group. DPI is aware of the need for a space for clinicians to have an opportunity to discuss various aspects of their clinical work with clients who present with Intellectual Disability and for those who may be interested in developing their practice in this area. The importance of having a reflective space to better keep the client at the centre of our thoughts can be challenging to find for the professional who works in Disability Services. The discussion groups organised by DPI can provide such a space. The upcoming Spring/Summer Series will consider organisational dynamics by reading relevant papers and open discussion. Discussion meetings are limited to a small number of participants (8-12) therefore early booking is advisable. The fee is nominal to cover room booking and tea/coffee. Seminar Information and Booking Time: 10.30 am to 1pm Dates: Saturdays: 14 February, 21 March, 9 May Venue: Irish Institute of Psychoanalytic Psychotherapy, 107 Lower Baggot Street, Dublin 2. Fee: €45 Completed Booking Form with full payment should be submitted by January 12th 2015
- 31. 31FRONTLINE Winter 2015 B O O K R E V I E W PEN PALETTE: BOOK REVIEW Reviewed by Jean Spain PEN PALETTE IS A book of poetry and paintings by people with intellectual disabilities who are past and present students on the Certificate in Contemporary Living Course at the Nation- al Institute for Intellectual Disability (NIID) in Trinity College Dublin. The book was sponsored by the Margaret Mc Loughlin Fund. Margaret was born with Down Syndrome and a serious heart condition. When she died ten years ago, after living into her 20s, her family established the Fund in her honour, to support and develop the creative skills of the students as part of their educa- tional experience in Trinity College. The family now wanted to celebrate Margaret’s anniversary—and what better way, than by the publication of this wonderful book. The art work is full of colour and makes you look closer for the full meaning of what the artists are telling us. Their honesty re- ally takes your breath away. Then there is the poetry—some very sad, others filled with happiness. The following two poems are just an example from this beautiful and thought-provoking book. In the preface to the book, Brendan Kenneally describes disability “as a mask that conceals a rich, surprising and fertile ability.” I see this as a book as a wonderful work, a celebration of the many talents of people with intellectual disability when they are allowed to express their feelings. Daddy by Sandra Flynn Not at home anymore Because of my disability? Divorced, (don’t you love Mammy anymore?) Please-- Come home. (I’ll be better I promise.) I miss the way things used to be. Here in the Connemara cabin by Derek Murphy Here in the Connemara cabin When we hear the music When it plays loud We all dance We were at mass We had communion But now the music has started We’re glad. It is so nice When it plays loud We’re happy that the music is on We like the quiet as well. Mc Loughlin Family at the launch of book “Pen Palette” by graduates of the Certificate in Contemporary Living (CCL)
- 32. FRONTLINENOW FREE ONLINE, with an extensive archive of back issues www.frontline-ireland.com