THE IRISH VOICE FOR INTELLECTUAL DISABILITY Volume 97 ● Winter 2015 F RONTLINE FAMILIES DUNDALK FC — FRONTLINE IN PRINT — HEART SURGERY CONTENTS F RONTLINE Volume 97 | Winter 2015 FEATURE: FAMILIES 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 10 SUPPORT FOR FAMILIES: 14 RESPITE IS NOT SOME THERE FAMILY-FRIENDLY BUILDING ON SUCCESS MYTHICAL UNICORN OPTIONS IN CARE DELIVERY? Roy McConkey Emma Dunne Evan Yacoub 12 THE ECONOMIC COSTS OF DISABILITY FOR FAMILIES John Cullinan MAIN ARTICLES REGULARS 27 DOWN SYNDROME AND 3 Editorial HEART SURGERY 4 Inclusion Ireland News Freddie Wood Cormac Cahill 28 FRONTLINE: REFLECTION ON NEWS THE HARD-COPY YEARS 5 CHANGING PLACES IRELAND Colin Griffiths Cormac Cahill 29 FRONTLINE: LOOKING BACK 7 FAMILIES BRIDGING THE GAP Mary de Paor 7 Letter to the Editor 29 PEN & PALETTE: BOOK 8 OPEN TRAINING COLLEGE GRADUATIONS REVIEW Reviewed by Jean Spain 8 SENSATIONAL SWIMMERS 9 KEITH WARD & DUNDALK FC ARE WINNERS! Mary Moran 2 FRONTLINE Winter 2015 FROM THE EDITOR CREDITS Editor Stephen Kealy PEOPLE, NOT OBJECTS Editorial Board Family is an essential fabric of who we are—understandings forged Mary de Paor in so many conscious and unconscious interactions—an environment Owen Doody where we are engaged and given opportunities to experience Mitchel Fleming Siobhán Kane warmth and tenderness—where children are challenged and they, in Siobhán MacCobb turn, challenge. Trust is burnished by active reciprocal engagement Michael McKeon and its calibration reflects the many-layered nuances of family life. Brian Manning Kathy O’Grady Such simple understandings as respect, warmth, looking out for Darshini Ramasubbu one another, sharing, expressions of concern; while not taken for Judy Ryan granted, these are recognised as vitally important to the human Jean Spain Michael Teehan condition, and their absence is equally recognisable. Angelina Veiga 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 Published by Frontline Magazine Ltd. 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 Design and Production living are personalised—reflecting trust, respect and forging relationships with people, as opposed Guilder Design, [email protected] to treating them as objects of reference. A core objective of Frontline has been to place the person with an intellectual disability at Printed by the forefront as people—people with rights, feelings, the need for warmth, affection, security, Opus Print fun, to be loved and cared for. Not everyone is suited to a caring role, but there is an enormous ISSN 0791–1270 responsibility on those charged with the care of others, regardless of whether they have an Published Quarterly 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 Cover Pic: Marcella or agency, whether statutory or voluntary, it is on the basis of trust and in the expectation that any O’Sullivan & Paul engagement with their family member will be respectful and personal. O’Sullivan 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 Frontline Magazine Ltd. is a ‘not for profit’ organisation, formed solely funding can be a substitute for treating people respectfully and engaging with the people with to publish the magazine Frontline. whom staff are paid to interact. Copyright resides with the individual In this issue, Paul’s sister Marcella O’Sullivan tells his story, describing how his challenging authors, but permission to reproduce behaviours were cited. It is likely some of the behaviour seen on the Primetime programme could any article must be obtained in writing have been described as ‘challenging’. But no one needs to be an expert to understand than the from Frontline. Views expressed in Frontline are those lack of engagement by staff members was a crucial component in such behaviour. How had the of the authors themselves and not nec- need to use one’s mobile phone, or to smoke a cigarette, become more important than doing the essarily those of the editor or editorial job for which they were employed? HIQA visitations do provide some reassurance, but what is board. crucially needed is for people’s lives to become more engaged and meaningful. Very often training Letters to the editor are welcomed. fails because of a lack of follow-up and implementation. This requires that those in leadership Name and address should be provided; they will be published unless otherwise positions must be courageous, proactive and constantly aware that the core component of active requested. engagement and relationships are based on respect. However, all involved in caring roles must Articles may be submitted for possible own their own behaviour and be accountable for that behaviour. publication in Frontline. Guidelines for . authors are available from the editor. Items on meetings, conferences etc. Stephen Kealy should be submitted well in advance of events, to meet the magazine publica- The Board of Frontline are seeking expressions of interest in the position of Editor. tion schedule. The position is voluntary and for a three year period. For further information, Frontline editorial address for letters, please contact: [email protected] articles and other items for inclusion: Frontline Magazine Ltd. Unit C2, The Steelworks Contributors to this issue: Foley Street, Dublin 1 E-mail: [email protected] Fionn Angus Mary de Paor Marcella O’Sullivan Website: www.frontline-ireland.com Jonathan Angus Emma Dunne Jean Spain Reg. Chy No: 18745 Cormac Cahill Colin Griffiths Freddie Wood Vicki Casserly Roy McConkey Máiríde Woods John Cullinan Mary Moran FRONTLINE Winter 2015 3 INCLUSION INCLUSION IRELAND NEWS International Day of Persons with Disabilities people with disabilities. The cast of sanctuary are actors Inclusion Ireland and Down Syndrome Ireland marked the with intellectual disabilities, and they raised many poignant International Day of Persons with Disabilities in style by points during their performance. They questioned the hosting two performances of the Blue Teapot production power dynamic that exists between support staff and people of Sanctuary, to packed audiences at Dublin’s Liberty Hall who use disability services. Though humour and poignant Theatre on 3 December 2014. The audience was treated remarks, the play demonstrates that people with disabilities to a double bill: a presentation by the Inclusion Ireland are denied the basic human right of privacy in their daily self-advocacy group, followed by the Sanctuary play. The life. 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 speaking at the presentation 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 Brian Hayes - Chairperson, Margaret Keogh - Vice Chair, disability services that are far from rights-based. Marie Wolfe Stephen McDermott - Secretary and Board member, Martin Rowan - Vice-Secretary and Board member, Adrian Noonan described it perfectly in Liberty Hall when she said ‘Give us – PRO, Dermot Lowndes - Vice PRO, Marie Wolfe - Member, the right sex education and training. People who use services Phil Davy - Board member, and Bernard Doyle - Member. need sex education and training. We need good information so we can make our own decisions. We feel service protect us too Brian Hayes spoke first and said; ‘We are here today to much. The law makes services afraid to give us sex education celebrate the international day for people with disabilities. and respect our rights, so they hold people back.’ Thank you so much for coming today and helping us to celebrate. Phil Davy, chairperson of the Connect People Network We hope today will bring some change to people’s lives so who have made two submissions on how the law should be people have more confidence in themselves to demand equal changed, asked for the Department of Justice to please listen rights and the freedom of having a relationship of their choice. and act on what they are saying. The law in Ireland today says that people with intellectual disabilities do not have the same rights to enjoy intimate INCLUSION IRELAND CONTACT DETAILS relationship as everyone else in Ireland. Today we want to tell Cormac Cahill, the government that this in not right and we want this law Communications & Information Officer changed.’ [email protected] (01) 8559891 / 086-837 3394 Marie Wolfe, a member of the self-advocacy committee and a lifelong activist for the rights of people with disabilities, Inclusion Ireland spoke on the day saying ‘Let us live the way we want.