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. We Unit C2, The Steelworks, have desires and wants like anyone else. Enough talking we Foley Street, Dublin 1. want action so change the law. We are asking for the law to be Tel: (01) 8559891 changed for a long time now. Enough talking. We want action Fax: (01) 8559904 to change the law.’ Email: [email protected] Facebook: www.facebook.com/pages/Inclusion- Sanctuary highlights how Section 5 of the Sexual Offences Ireland/144471862139?fref=ts Act 1993 dramatically impacts on the intimate lives of Twitter: @InclusionIre

4 FRONTLINE Winter 2015 CHANGING PLACES IRELAND

Cormac Cahill, Communications & Information Officer, Inclusion Ireland makes the case for the Changing Places campaign.

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

FRONTLINE Winter 2015 5 INCLUSION

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

6 FRONTLINE Winter 2015 THERAPIES / LETTER FAMILIES BRIDGING THE GAP

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. speech therapy. While this is happening, parent can meet In many areas of the country parents are coming together together over coffee, and there are also regular lectures and to provide what Conroy terms ‘associative parent provision’. talks. Through family contributions and fundraising, children are Many local family support groups such as Laois Offaly able to access an appropriate speech and language therapy Families for Autism assist their family members to access service at an affordable price. While fundraising to provide speech therapy privately via a subsidy. In a recent survey, services is not desirable, the determination of families 25% of children in Laois and Offaly had not seen a speech to provide a service in a vacuum created by the HSE is and language therapist for more than one year. Again, a admirable. family-led response is making speech therapy available to In 2007, thanks to the hard work and dedication of a children. small group of parents, Clare Crusaders established a clinic Recent media reports on the lack of an effective speech to provide therapy services to children with a disability. therapy service have inspired one County Louth man to Clare Crusaders is a community response to the lack of establish a local service. The aim is to provide an affordable publicly available services. At present, this family-led speech therapy service for young people with autism that charity provides occupational therapy, speech therapy and will make a difference in their lives. The founder is a father physiotherapy to 350 children with a disability for free. of two boys with autism. The cost of €250,000 per annum to run the service is met It is shameful that families and support groups have to through community fundraising. raise funds to access a speech and language therapy service The effectiveness of early intervention is not lost on for their children. These are basic services that should the families associated with the Kildare Down Syndrome be publicly available. However, families in many parts of branch. Conroy notes that through a combination of Ireland have shown their determination and creativity family contributions and fundraising, children can access by establishing their own cost-effective services. Families a small, weekly playgroup. Children learn many of the realise the importance of early intervention, especially in skills required for preschool through play. The children speech therapy, and many of them are bridging the gaps in are brought out from the group for individual sessions of HSE services to give their child a better chance. LETTER TO THE EDITOR

Dear Frontline editor, is surrounded by staff at all levels who are dedicated to her As many people were, I was very concerned by the allegations welfare and well being, and who at all times show exemplary that arose from the recent RTÉ investigative programme. I was dedication and commitment. I am confident that this is the however also impressed by the calls from the family of one case in the vast majority of situations. This of course makes resident, Mary Garvan, for the avoidance of trial by media and the situation outlined by the RTÉ investigation all the more in effect for due process. reprehensible: a breach of a sacred trust. My fear is that Olivia O Leary in a Drivetime broadcast entitled ‘A Sacred the misbehaviour of a few can tarnish the good work and Trust’, best summed up my experience and sentiments on the professionalism of so many. We must not allow this to happen. issue. For many years my sister, who has Down Syndrome has been in the care of what is now known as the Muiriosa Patrick Larkin Foundation. She lives in a community house and works in Fosterstown, an enterprise supported by Muiríosa. I know that my sister Trim, Co Meath

FRONTLINE Winter 2015 7 OPEN TRAINING/ COPE FOUNDATION

OPEN TRAINING COLLEGE SENSATIONAL SWIMMERS GRADUATIONS 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 Aenid Doherty ( Enable Ireland) recipient of the Gerry Clarke Department in Cope Foundation. The multidisciplinary project Award at the Open Training College Conferring of Awards team noticed that in their local community children who had additional learning needs often struggled to participate in CONGRATULATIONS TO ALL the recent graduates of the Open conventional swimming lessons and/or accessing their community Training College who attended the Conferring of Awards ceremony on swimming pool, and that families had difficulty accessing local Saturday, 15 November at the RDS Concert Hall in Dublin. Almost one pools as a result. The team found that adding specific teaching and hundred graduates achieved third-level awards in the areas of Social communication strategies, addressing behavioural issues, and using Care and Management in the disability and wider non-profit sectors. an understanding of specific learning needs greatly improved the Special mention goes to Aenid Doherty (The Gerry Clarke Award), children’s enjoyment and success in learning to swim. Paul Foster (Social Care Ireland Award for Academic Excellence), and Peter Shiels (The Wheel Management Award for Academic Excellence) The programme offers for achieving their respective ‘Student of the Year’ awards on the day. ■ Orientation day for families and children to introduce the child Aenid Doherty, a care worker at Enable Ireland, stated, ‘I am to the pool thrilled to have been awarded the Gerry Clarke Award for Excellence ■ Parent Training on Lámh sign language and the use of visual aids in Practice from the Open Training College. It is a great honour. He to support transitions, facilitated understanding and increase was a very popular tutor because he was so knowledgeable, yet attention to activities. so approachable and helpful to anyone who needed a bit of extra ■ A picture of reference and individualised social story as part of guidance on the Social Care course. I am also surprised and delighted preparation for attending the lessons. to have received my Honours Social Care degree here today. I wish to ■ 6 weekly sessions with goal progression from developing safety thank my family, friends and co-workers for all the support along the awareness and confidence in the water to learning specific way.’ swimming instruction. ■ Receipt of a certificate by all the children on completion of the 97 Graduates received accredited awards for courses in: lessons, with an outline report of goals to continue to focus on, ■ BA in Applied Social Studies (Disability) in order to consolidate the child’s learning. ■ Certificate in Applied Management (Non-profit/Human Services) ■ Person Centred Planning - Focus on the Individual What parents say! ■ Certificate in Supported Employment ‘I have now enrolled my son with confidence in swimming lessons in ■ Honours BA in Applied Social Studies (Disability) our local area.’ ■ Teaching Independent Living Skills ■ Higher Certificate in Applied Management (Non-profit/Human ‘I am ready to bring my children to a public pool and feel more Services) confident in doing so.’ ■ BA in Applied Management (Non-profit/Human Services ‘My daughter has used the visual aids at home to request swimming Each course is delivered through the award winning ‘Supported and to talk to others about what she is doing. ‘ Open Learning model’ which is designed specifically to allow frontline workers and managers to benefit from access to accredited, flexible ‘My child has loved coming to the class and I wish it would continue.’ 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 [email protected]

8 FRONTLINE Winter 2015 CILLIAN’S STORY

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

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.’ THE 2013/2014 SEASON was a momentous one for I am never normally stuck for words, but even now Dundalk Football Club. For the first time in 19 years they words fail me when I think of that most wonderful gesture. have just brought the most coveted trophy in League I remained frozen to the spot, cried , then tried to protest— of Ireland soccer back to Oriel Park, by winning the SSE pointing out that he would need the medal back. Cillian, of Airtricity League. They also won the EA Sports Cup in a course, not realising the significance of the gesture, simply final which saw Oriel Park filled to capacity. Attendance at said thanks, and carried on as if it was the most normal these matches reached several thousands. thing in the world. To me, it was the most generous thing Just two years ago I attended Oriel Park in a league ever and one I know we will never forget. Keith replied that relegation play-off with my son Cillian, where just three he won it for Cillian and was happy to give it to him. It’s hundred supporters turned up to cheer on the team. hard to believe that such a young lad would be so generous Fortunately they managed to stay in the Premier Division and unselfish, giving away his first major soccer medal. The and went on to completely turn the tide in the last two pitch was packed with fans, but I felt as if there was just years with their new manager Stephen Kenny. the three of us on the field. I have written before in Frontline (Issue 89, Winter 2012) There is a mental health campaign called ‘#LittleThings’ about my 17 year old son Cillian’s devout love for Dundalk running at the moment, where people are encouraged to FC, whether for their battle to stay in the top division or talk about the little things that have helped them improve bidding to become league champions. The one constant their mental health. Every time I hear it advertised, I think that has been his dedicated following of the Lillywhites. of Keith Ward and all the lads on the Dundalk FC team. And that devotion is not just one way. For the last number Keith’s gesture was no ’little thing’ in my eyes—but it will of years, Dundalk FC have helped my child in more ways forever remind me of a most unselfish act and it keeps than they could ever know. Yes, they are champions of me going on a bad day. The only problem I have now is the country now in soccer, but they are also champions as trying to get Cillian to take off that medal. He is firmly a sportsmen and true gentlemen. member of the team in his eyes and he has Stephen Kenny Throughout this year several players were sidelined plagued for a contract for next season! Unfortunately through injury and forced to sit in the stand for the weekly Keith Ward has now signed to play with Sligo Rovers next matches. My son, who talks and questions nonstop, asked season. I haven’t told Cillian yet—we’ll deeply miss him, one night if he could sit with Keith Ward and Stephen but wish him every success at his new club. Sligo Rovers are O’Donnell, the team captain. It was one of the first times extremely lucky to get such a true sportsman.

FRONTLINE Winter 2015 9 FAMILIES SUPPORT FOR FAMILIES: BUILDING ON SUCCESS

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.

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 THROUGHOUT THE WORLD, people with intellectual from the 1990s onwards about their value-for-money, disabilities are dependent on family carers. This is especially their accountability and their response to individual so in childhood, but in most countries their care-giving needs and aspirations. Hence, in 2015 I suspect we are at extends well into adulthood and often for a lifetime. What is a tipping point when a new philosophy starts to become remarkable is the exemplary care that most families provide more dominant in guiding service provision: namely the to their much-loved relatives despite having little prior philosophy of ‘personalisation’. This bring about radical experience of disability or any formal training. They have to change to the ways in which service supports are delivered be available 24/7, often with few breaks and irrespective of over the coming decades, in the same way that community the toil it takes on their emotional well-being and financial services transformed institutional care. It will not be merely resources. They are the unsung heroes in creating better a repackaging of old wine in new bottles: this new wine will lives for Irish people with disabilities and yet I fear that their destroy the old bottles. enormous contribution is taken for granted as health and social care services become more professionalised. Family-centred working Ironically, austerity cutbacks often hit family carers Families will have to be central in personalised services. hardest; they have to struggle on when short breaks are cut Indeed, from their perspective, they always have provided back, day centres are full and a promised place in residential personalised care to their relative. Usually it has been care evaporates. But too much tension causes ropes to snap. services who have treated children and adults as part of I fear that we professionals are in danger of losing the trust a group rather than as individuals. Thankfully in recent and respect of families, many of whom are better educated, decades we have seen the emergence of family-centred more articulate and demanding than those of a previous practices. This began in the 1980s with home-based early generation. Positive action is needed throughout our service intervention services led by visionary psychologists, systems to forge new partnerships with families so that the therapists, social workers and educators, and it has spread rights of people with intellectual disabilities to a fulfilled life through inclusive schooling, short-break provision, are achieved. supported employment schemes, leisure activities and personalised living options. The lessons from history In all these initiatives, the involvement of the family Fundamentally we need to loosen the shackles of outmoded has been central to their success. They have been the ways of thinking. In common with many other countries, sustainers, if not the instigators and drivers, of new ways of today’s Irish services were premised on taking over the supporting people with intellectual disability. Many of these care of people with disabilities from their parents. Hard- new schemes have been subjected to thorough evaluation pressed families in the 1930s onwards were encouraged to and research—often far in excess of the scrutiny to which

10 FRONTLINE Winter 2015 traditional services are exposed. I have been privileged to clashing appointments and conflicting advice. Well-tried lead on many of these evaluations in both parts of Ireland, solutions start with having a ‘key-worker’/’coordinator’ for as well as internationally: the results of the evaluations are each family, through whom communications from different detailed in many reports and articles. Reflecting back on professionals and agencies can be channelled. Also all the these findings, three strategies contribute to the success parties need to contribute to a written and updated family- of personalisation. They cost little to implement and centred plan that embraces all the supports provided to the are embarrassingly obvious. Indeed, some may question person with a disability and to the family, and which is held the value of spending thousands of euros on research to by the family and shared with all parties to it. However, discover them. In defence, I would simply state many the thorniest coordination issue is often around service millions more are spent every year in services in which transitions: from child to adult services, for example. The these attributes are not present and arguably not even lack of forward planning and the dearth of communications expected. between staff in the different services is a persistent complaint that speaks volumes about existing mindsets and Trusted relationships service structures. The relationships that professional workers have with a person with intellectual disabilities, their families and with And there’s more... one another are undoubtedly the number one priority. Of course there are many other strategies that will transform Central to this are the human qualities (such as warmth, present service provision, such as personalised funding concern, friendliness, sense of humour, commitment) arrangements, greater use of mainstream rather than that each brings to the relationships. They weigh much specialist services, and the growth of advocacy by persons more than any qualifications or expertise. These personal with intellectual disability, to name but a few. Equally, characteristics may be honed through training, but they societal changes will put extra pressure on families: the cannot be taught. Ironically, I have seen these qualities increase in single parenting; the contraction in extended more often in staff working in the lowest salary grades than families and in neighbourhood supports. Underpinning I have in highly paid managers and clinicians. Recruitment all of this will be increasing numbers of old and very old practices, job specifications and supervision sessions all persons with an intellectual disability, and more children need to emphasise these human qualities and how they with complex needs surviving into adulthood. Our already are deployed, especially in times of distress, dispute and stretched health and social care budgets will not be able to disappointment. Active listening to people is the key to afford the types of services currently provided. A continuing relationship building—and maintaining contact though challenge will be to ensure that those with the greatest phone, text or social media is essential and can cost little need receive the most support, as will be finding ways of in terms of time. Paid supporters will find it easier to providing personalised care when families are no longer build these relationships in natural locations such as the available or able to do so. The agenda may be daunting, but family home, rather than in clinic settings. These contexts it is manageable given the passion, creativity and expertise also enable a more complete assessment to be made of that thankfully still exists in Ireland. This, over the years, the family’s needs as well as those of the person with the has been reflected in the pages ofFrontline and hopefully disability. will continue to do so in the years ahead. In the coming decades families inevitably will need to Information become more self-reliant in the sense of taking control The most common complaint I have heard over the over their lives, but being actively supported in so doing. years from families is a lack of information and poor We have growing evidence internationally from Canada, communication. For many families, coping with disability Australia and Scandinavia, as well as from Ireland, that is a totally a new experience. Staff need to be proactive in many families are not only willing to take on this role but giving information to families and talking through what that in doing so, benefits are brought to everyone and most it could mean for them. Likewise, staff need to respond importantly to their disabled relatives. The bigger question speedily to family’s request for information, even if it starts is whether we can find the people, the strategies and the with ‘I don’t know, but I’ll find out.’ Being honest about systems that will provide reliable and effective support to one’s ignorance can apply, especially when clinicians are families throughout our island. I am confident that we will, asked to speculate about the prognosis following their provided that we change current mindsets among families assessments. Likewise differences of opinion between and service personnel. Already a good start has been made, parents and professionals need to be respectfully negotiated but the best is yet to come. and accurate information about choices and options can assist this. This is particularly important around transitions Roy began his career in intellectual disability in 1970 at between services. The reasons why families may be refused Manchester University. He moved to St Michael’s House services need to be carefully explained and set in the Dublin in 1977 and then on to work with the Brothers of context of alternative options. Families still talk of having Charity in Scotland in 1988, before returning to Northern to ‘fight’ to get the services they require. Ireland in 1997. In recent years he has maintained close contact with Irish services through his Visiting Professorship Coordination at Trinity College and his involvement with the Health Families bemoan the number of people and agencies Research Board, Genio Trust and the National Federation with whom they have to deal. Their lack of coordination of Voluntary Bodies. A list of his publications is available at: frustrates parents as they retell their story and deal with www.researchgate.net/profile/Roy_Mcconkey.

FRONTLINE Winter 2015 11 FAMILIES

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.

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 IN A MUCH-CITED SPEECH to the World Bank in 2004, work, compared to 73% of all adults. The percentage at work the Nobel Prize winning economist Amartya Sen made a was particularly low for those with a physical, psychological or distinction between two types of economic costs, or what emotional disability. However, it is not just the likelihood of he called ‘handicaps’, that tend to be associated with having a job that is affected. Disability is also likely to have an disability (Sen 2004). First, according to Sen, individuals impact on earnings for those who are in work. Nolan (2004b) with disabilities face lower human capital accumulation (e.g. states that ‘while estimating these effects is complicated by the education) possibilities, are less likely to be employed, and fact that those with a disability and in employment may have even if employed are likely to have lower earnings. This he distinctive characteristics, the evidence suggests a significantly called an ‘earnings handicap’. Second, because individuals lower predicted hourly wage for an otherwise identical with disabilities tend to have extra needs, they face greater individual reporting a hampering chronic illness or disability.’ difficulties in achieving economic well-being from a given level of resources, i.e. they face what Sen called a ‘conversion Poverty and social exclusion handicap’. Together these two types of economic costs have Thus far the evidence presented suggests that individuals with very significant implications for the economic situation of a disability are negatively impacted in terms of educational the disabled population and their families. In this context, attainment and labour market outcomes, both of which this article reviews the evidence on these costs in Ireland and are crucial for the economic well-being of these individuals discusses their implications for poverty, deprivation, economic and their families. In terms of these impacts, Nolan (2014a) hardship and social exclusion. It also sets out some thoughts highlights the heightened poverty risk and experience of on an appropriate public policy response. consistent poverty for people who had a chronic illness or health problem, or who were limited in their activities. For Education and labour market outcomes example, the so-called ‘at risk of poverty’ rate was considerably Analysing the relationship between disability and educational higher for households with an individual with a disability attainment is complicated by the fact that, while disability can (16.0% versus 12.7% in 2008), while the ‘consistent’ poverty have a negative impact on educational attainment, it is also rate was double (6.4% versus 3.2%). The work also highlights

12 FRONTLINE Winter 2015 that disability impacts on broader aspects of participation in and unavoidable expenses incurred by individuals with a community life and that this is also of central relevance in disability and their families. There has been a protracted terms of the social exclusion experienced by disabled people debate in Ireland concerning the possible introduction of more broadly (Nolan, 2014a). a cost of disability payment, though the importance of this issue has been acknowledged by many, including the Direct costs Commission on the Status of Disabilities in Ireland and the The discussion so far tells only part of the story in terms of United Nations. While the level and nature of government the economic costs of disability for families. The impacts assistance are ultimately determined by social and political of disability on educational attainment and labour market choices, the evidence presented here is that there are a wide outcomes are clearly related to Sen’s notion of an ‘earnings range of very significant direct and indirect economic costs of handicap’. However, of equal, or perhaps even more, disability that imply people with disabilities and their families significance is his concept of a ‘conversion handicap’ and are much more likely to face poverty and economic hardship. recent work by Cullinan and Lyons (2014) has investigated Quite simply, current policy does not adequately address these this issue in detail. Their analysis considered the direct private issues. economic costs borne by households containing disabled persons when compared to the wider population. Because The economic impact of childhood disability households with an individual with a disability divert scarce While the analysis presented thus far has considered the resources (i.e. their income) to purchase disability-related economic costs of disability for adults and their families, goods and services, they suffer from a conversion handicap recent research has also considered some of these issues in terms of translating their income into economic well- for children with disabilities (Cullinan and Roddy, 2014). being. Using a ‘standard of living’ approach, the authors In particular, the research presented, for the first time, a defined the direct economic costs of disability as the extra socioeconomic profile of childhood disability in an Irish income required by a so-called ‘disabled household’ to achieve context. Using data from the Growing Up in Ireland survey, it the same standard of living as an equivalent ‘non-disabled considered the association between a range of socioeconomic household’ and sought to estimate these direct cost. measures and the disability status of nine-year-old children in Using data for 2011, the study found that these direct Ireland. The findings are striking. They suggest that, overall, economic costs are significant, vary by the number of the primary carer of a child with a disability is considerably individuals within a household with a disability and also less likely to participate in the labour market and considerably by the extent to which an individual is limited by their more likely to turn down work opportunities, when compared condition/disability. Overall the main finding is that the to a primary carer of a child without a disability. Indeed, estimated economic cost of adult disability is 35.4% of income these differences are found to be more pronounced, the more (or about €207 per week) on average, using a ‘condition- limiting is the child’s disability. Similar patterns are also found based’ measure of disability, and 54.5% (or €276 per week) in relation to parental education and social class. Parents of on average using a ‘limitation-based’ measure of disability. a child with a disability are less likely to be educated at third These are the central estimates of the additional income that level and more likely to be in the lowest social class. Not would be required for disabled households at the median surprisingly, these households also tend to have lower incomes income levels to attain the same standard of living as an and much greater difficulty in making ends meet. In fact, for equivalent non-disabled household. Other findings of the all of the socioeconomic measures examined in the research, research suggest that the additional costs of disability are the presence of a child with a disability in a household is borne most heavily by those individuals who suffer the most strongly correlated with worse outcomes. In considering these from their disability in their day-to-day lives, and those living results, it is important to also acknowledge the intangible costs in households with multiple disabilities. of childhood disability to the child, their family and society. These findings are important. They suggest that disabled Studies show that raising a child with a disability places households divert a very high percentage of their income complex demands upon various aspects of family functioning to goods and services they would not ordinarily choose and may increase stress, as well as affecting family members’ to purchase. This is at the expense of goods and services health and general wellbeing (Reichman et al. 2008; ISPCC that are typically associated with economic well-being, 2007; Seltzer et al. 2001). which they may be forced to forego. The results also have important implications for the measurement of poverty In conclusion amongst those with a disability in Ireland. Since disability The research described in this article portrays a worrying reduces the standard of living of individuals with a disability, picture of the economic circumstances of the disabled and poverty measures such as those presented above will likely their families in Ireland. The evidence is clear that in terms of underestimate the needs of these individuals. Thus, adjusting educational attainment, labour market outcomes and social household data for disability would actually likely increase participation more generally, people with disabilities who are poverty rates in the country. hampered in their day-to-day lives fare significantly worse across a wide range of measures. Furthermore, people with What to do? disabilities and their families face a whole host of additional In terms of policy implications, the evidence clearly suggests direct costs which lead to a further reduction in their living that current policy does not go far enough in addressing the standards. As it stands, it is evident that policy in Ireland extra costs faced by individuals with a disability in Ireland and does not go far enough in addressing these issues and, in this it supports the case for the introduction of a ‘cost of disability context, a cost of disability payment should be considered as a payment’, a cash payment that takes into account the extra way of alleviating some of these adverse outcomes.

FRONTLINE Winter 2015 13 FAMILIES

RESPITE IS NOT SOME MYTHICAL UNICORN Emma Dunne, whose daughter has autism, says that respite is not a luxury, it’s a necessity.

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, AS A PARENT CUDDLING my new baby, ‘respite’ was never a my heart caught up with it years ago. I can see the huge benefits term or an idea that entered my head. To be honest, I had no to a stable and structured respite service. I know that I would be real understanding of what that term entailed or would later better able, physically and emotionally, to care for my daughter come to mean in my daughter’s life, and mine. When Tess was long term, if I had days to rest and was able to plan days away on born, I dreamed of my daughter growing up and all the typical my own or to look forward to special adventures with my other girly adventures she would have and how nice it was that she children. And Tess would have the opportunity to develop bonds had a sister to share all these moments with—school, boyfriends, with her peers. All of my other children have had countless weddings, babies—the list in my head was endless. Then, two play dates, sleepovers, birthday party invites—normal growing- and a half years later, without welcome or warning, came the up activities like going to the cinema or bowling with friends. diagnosis of autism. If respite was provided, this would enable Tess to take part in We were surrounded by support and the idea that if we worked activities outside the school setting and improve her interactions hard enough, at home and at school, autism didn’t have to with her peer group. mean an end to all those dreams for Tess. Although we have long As I mentioned, respite was not something I dreamed of in the since accepted that autism is here to stay, we are now facing a beginning, but it certainly is now. I question the HSE’s reluctance different future as a family. Tess is now attending St Paul’s Special to provide an adequate service to exhausted parents and isolated School for children with autism. She is a gorgeous, affectionate children. Does the HSE feel that parents caring at home for their and lovable 8-year-old. Tess is also non-verbal, not toilet trained, disabled children are not worth helping? Does the HSE feel that impaired by Sensory Processing Disorder & sleeping difficulties, because my child has a disability she does not deserve adequate learning disabled, fast, strong and has an incredible desire to services? Is it because Tess doesn’t speak, that she has no right to bolt or escape out of every situation. Tess’ daily care needs are complain? The general public seem more concerned with water relentless. She cannot be left alone for even a few minutes; and charges than further cuts to the disability services. People I speak of course this has a huge impact on me, my husband and her 3 to assume that if you have a need, and you have a diagnosis, that siblings. The older and stronger Tess has become, the challenges you will be given what you need. But we know that this is far of bringing her anywhere make me question if it is actually from the truth. worth it. The embarrassment and disappointment that her There is a new model of respite bubbling under the service siblings often feel, the stares and tuts we encounter from other and it feels like cost saving measures to the most vulnerable yet

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

FRONTLINE Winter 2015 15 FAMILIES JAMES’ STORY: A PARENT’S PERSPECTIVE

Vicki Casserly tells the story of her son James who was born with cerebral palsy.

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

16 FRONTLINE Winter 2015 or misperception I have been met with is attitudes to children options available such as Domiciliary Carers Allowance, Carers with disability attending mainstream school. I sometimes have to Allowance, Carers Benefit, Carers Leave, support groups and so on. make it clear that I don’t expect James just to do well by attending Taking some of the stress away from what is already a stressful and school—like any parent, I expect him to do his best, and that is daunting experience, and informing parents of options can lighten hugely different. the load. As a parent, I focus my time and energy in overcoming obstacles, To summarise my hopes and aspirations for James, I want him to focusing on what can be done to empower my son to live life to grow up into a strong, confident young man, happy, independent the maximum. I feel as a modern society, more emphasis should and, most of all, healthy. When James grows up, he wants to travel be put on education and awareness to give us the desired universal the world (starting in Barcelona, because it’s the most accessible community we aspire too. city in Europe), and to be a Paralympian swimmer. Like so many A greater sense of rights and entitlements should be more easily other parents, I hope our society evolves and aspires to allow James available for parents entering this journey—with clarity given on and others to achieve this. PARENTS AND PROFESSIONALS: THE FARMER AND THE COWMAN?

Máiríde Woods writes about the delicate relationship between the parents of those with an intellectual disability and the professionals who treat their children.

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

FRONTLINE Winter 2015 17 FAMILIES

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.

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 WE’D LIKE TO tell you about Fionnathan Productions, an arts development of cetacean recording in the area, by promoting collaborative and video-making enterprise that intends to IWDG recording schemes. change the world. First, we’ll tell you how it started, then why Fionn is a diligent student, and he has become knowledgeable we are doing it, then what we are hoping to do next. about all types of animals. Once he had memorised the taxonomical orders of mammals, we decided to prepare a How Fionnathan started presentation for school children on Ireland’s mammals. With To introduce ourselves, Fionnathan comes from Fionn and the help of a slide show, Fionn talks to the children and answers Jonathan. Fionn is a young man who completed secondary their questions. We next developed talks on the return of the school this year in County Clare, and Jonathan is his father. sea eagle to Ireland, and on studying whales and dolphins. The two of us decided to set up this project when we met with Fionnathan are recognised by the Heritage Council as ‘Heritage adverse circumstances. The mainstream secondary school had Experts’, and we joined the Heritage in Schools Programme made a decision to exclude Fionn halfway through his first year Panel. In fact, Fionn is Ireland’s youngest Heritage Expert. of the Leaving Cert Applied programme. They were wrong to Neither a small stammer nor the fear of public speaking has do this, and we proved as much, winning an appeal to have him prevented Fionn and Jonathan from taking up subsequent offers reinstated. But the process took four months, during which his to give talks to various groups. At Fota Wildlife Park, Fionn mother and father (both trained teachers) home-schooled him. joined the mayor of Cork on the podium to launch the Tour His mother taught the core subjects, which left his father the fun de Munster. We were then invited to present talks on effective job: helping him to explore and develop what he loved. He has community inclusion and participation at Down Syndrome three main areas of interest: Limerick’s AGM and at the International Initiative for Disability 1. Ever since he was small, Fionn has nurtured an abiding Leadership Exchange, hosted this last June in Dublin by Leap (a

18 FRONTLINE Winter 2015 ‘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 wonderful family leadership group). Through the latter we met casting director liked the way he read for the part, then called people doing innovative and inspiring work in England, Canada, him back for a second reading with the director and lead actor. Australia and New Zealand. There were a number people We were a bit disappointed to hear that they chose another interested in collaborating with us, so there might be some young actor, but we didn’t give up. We asked if there was any travelling in our future. And, during the final month of 2014, we other job we could do, and we both landed parts as incidental are doing a short North American tour, speaking to audiences in actors. Canada and the United States. I don’t mean to suggest we’ve had nothing but successes Perhaps it may surprise you that the son is the more since starting this project—there have also been plenty of accomplished of the two musically. Thanks to weekly individual Fionnathan Fails. lessons and (pretty much) daily practicing since the age of ■ We lost out on any award in 2 of the 3 film festivals we have nine, Fionn has a strong and confident footing in traditional entered thus far. Irish music. Jonathan is working hard to catch up, and often ■ We didn’t win the large role in ‘Glassland’ accompanies him on the guitar. We love to perform publicly, at ■ We weren’t allowed to participate on the crew of ‘Before the farmers’ markets and anywhere that groups of people gather. Boat’ (short film project) because of insurance issues. You may have heard us, as we’ve played over the past two years ■ We haven’t got to interview Christy Moore or Liam Neeson or in twenty Irish cities, towns, and villages, plus two weddings Michael D. Higgins (yet) (no funerals), one pub session, two talent shows, on six islands ■ We didn’t get to join One Direction. off the west coast, and on numerous farms—to serenade cows, horses and sheep. Recently, we have begun monthly charity So, there have been plenty of letdowns. We just find that busks, donating whatever money we collect to worthwhile optimism seems to be the best default position, and we keep groups. looking positively toward what is coming next around the In the summer of 2013, we interviewed eight people with corner. Down Syndrome who live in County Clare. This project arose from the desire to give a group of people some insight into the Why Fionnathan? lives of a small sample of this unique population (of which Fionn Busking is a very public activity, and you meet all kinds of is one). The group for whom we made the video were the 120 fascinating people. Although it’s wonderful when people cyclists in the Tour de Munster, all of whom had raised funds introduce themselves as someone with a family member who connected with the 4-day ride to benefit people with Down has Down Syndrome, it’s just as wonderful when this aspect is Syndrome. overlooked. One of my favourite moments was when a woman We thought it would be great to ask people a single question. came up as we were busking, and she said to Fionn, ‘I just Fionn was the one who came up with the perfect question: wanted to tell you how brilliantly you play, given the fact that ‘What do you love about your life?’ When we began to plan you are left handed.’ the project, we realised that we didn’t want to exclude people Primarily, we are doing this to win for Fionn a good life, just because they couldn’t or wouldn’t speak on camera. So whatever that will prove to be. Along the way, we may learn we came to the solution that, whatever the answer might be some things that could benefit others on their journey to find a (sometimes voiced to us by a loved one of the interviewee), good life, and we’re happy to share what we learn. we would film the person doing that thing. The film was well When asked about Fionathan Productions and what he liked received, and the next thing we knew, RTE was calling. about it, Fionn answered, ‘I really love this guy beside me and On RTÉ’s Saturday Night Show, Fionnathan were interviewed he really backs me up and I am so proud to be his son.’ So, for and performed music in October of 2013. When he was asked the time being, we’re both happy to see where this journey by the host, Brendan O’Connor, in front of a quarter million takes us. This project may have a limited shelf life. The need viewers at home, ‘How does it feel to have Down Syndrome?’, to allow space in Fionn’s life for more long-term relationships his reply was, ‘How does it feel to not have Down Syndrome?’ to develop with same-age peers is a very important one. As And Jonathan simply said that Fionn is more capable than him a family, we’ve applied for funding from the HSE for Fionn’s in many areas of life, that dividing society into ‘disabled’ and individual plan, and hope to hire a young lad or two to help ‘abled’ people is usually unhelpful, and that we are all made him navigate more peer-based social situations. He attended a

FRONTLINE Winter 2015 19 FAMILIES

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 youth film school during the summer, without a designated day working with individuals in many different occupations, to supporter, and that was mostly successful. highlight the many kinds of work that people engage in, and Fionnathan exists to have fun and change the world, to to help Fionn make a more informed choice about the type trouble your understanding of ability, to reveal superstars in our of work he wants to strive for. We already have a soapmaker, midst, and to prove that, in fact, we are the people we’ve been a farmer, a teacher, and a wildlife TV presenter on board. waiting for. Exciting stuff. If you have ideas, or would like to offer to We share our stories of audacious creativity and abiding host Fionn for a day of interesting work, let us know. optimism with the masses, opening one heart at a time. And, if you’d like to stay informed and connected with our Through music, live presentations, videos and visual arts, we future exploits, follow us on Facebook, Youtube or Twitter; seek to collaborate with diverse people who are passionate go to our website (search for Fionnathan, in each case); or about what they do. We playfully engage with the world of drop us a line at [email protected] 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

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

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PAUL IS A 47-YEAR-OLD non-verbal man. As his sister, made him a promise I would do everything I could to help three-and-a-half years younger, I have became his voice him to have the life he deserved. I had no idea how I was over time. Together we took a journey, for Paul to be heard going to do it, but I knew I would someday. and to be seen for more than just his labels. His life journey Over the following years I continued to see Paul. It took shows his strength to survive in any situation. me five years to get him to the front door of the place, the Paul went to a special school in Cork because he wasn’t fear of the outside world was so frightening to him. Paul able to fit into the mainstream sector. But teachers didn’t was then in his mid-twenties, 4ft 10inches, weighing about understand him; he was the bold child who got bored 6 stone. Any time I saw him he was so sedated, he could easily and caused disruption in the classroom. So at eight, hardly walk. Two staff members brought him out—men over he was moved to a place ‘that would understand his needs 6ft tall. What a contrast! better’. But within a short period Paul started to regress. I slowly started to question things, but always the No explanation was given to him; he was now living in a situation was defended. I could see intimidation from the residential school, away from home, with others he didn’t front door, so I definitely questioned the level of control and know. He came home every second weekend and for short intimidation inside. It was like Paul was living in a prison. period at holiday times, but the institutional setting began In 2001, I was finally able to speak up on Paul’s behalf. at that point. I even remember as a little girl going to collect When I called one October weekend, PAUL arrived with Paul, putting my face up to a glass door trying to see how he infected wounds on his face, with half his ear gone and his was. Even then I had a strong intuition that it was wrong for cheek bones protruding clearly in his face. I was told he had Paul, and that they didn’t understand him. received antibiotic treatment the month before, and didn’t Paul never learned to read or write, and he lost the require any more. Paul’s hands were blown up like balloons words he had once had. Boredom was always an issue. He from being tied behind his back—‘for his protection’, I was developed ‘challenging’ behaviours and by the time he was told. His weight had dropped further, and he was in nappies. coming into adulthood, the only place available to him was Paul looked extremely unwell and nothing was being done. the psychiatric sector. Paul was on a cocktail of medication By then he was over 30 years old, and although I had no by the age of 17 years. Nothing was ever explained to him— idea what to do, I knew I couldn’t just walk away and say he was just landed in the settings. At 18 years old, he was in nothing. a lock-down, high-security unit in Cork. I went to an MEP who understood that the situation was As his sister, again reflecting back to me as a youngster, as serious as I did. She came with me to see Paul and she sat he was someone who knew words would never help him on the floor crying with him, while two staff members held in the settings where he was. He showed his annoyance him down during our visit. We both went to the Minister and frustration in behaviour—the only way he could for Education at the time and he told me: ‘I know it is hard, communicate. His behaviour came out of frustration—and but accept the situation and move on.’ He admitted that the he was given the diagnosis of challenging and self-injurious photographs were hard to look at, but there was nothing he behaviour. Paul was stated to have mental retardation—over could do. I went to the Minister for Health, and he didn’t time the term changed to ‘mental handicap’, to handicap, even know where the place was. I put an article in the and today it’s known as ‘intellectual disability’. paper in December 2001 and, finally, that sparked serious I believe that with no real intervention, apart from interest in Paul’s health. I spoke on radio stations about the medication, from the age of eight, Paul communicated quite situation and it was always only about how Paul had no loudly about his dissatisfaction of where he was. Watching voice to describe the place he was in and his life. him from young boy to adulthood, I saw Paul change and Paul was finally seen by a specialist; He had thread worms the person he had been disappear. He wasn’t being heard and he was ulcerated from the back of his throat the whole and the more he behaved badly, the more medication he way to his bowel. Can you imagine the pain he was in? Even got. He had no voice; professionals deemed that the best today he has a huge scar on his face and also half his ear is place for him was in a psychiatric setting. gone, as well as the scar from his burst appendix –all reflect I often hear that ‘that was the way it was back then’, and that time. ‘it was the only answer they had.’ Maybe so, but does that I believe my intervention saved Paul’s life, because with let people off the hook so easily? ‘Back then’ is still very the huge amount of medication he was on, his terrible much the recent past for Paul’s journey. physical condition would have been unnoticed until it was Over the years Paul came home less frequently. For many too late. He was in a lock-in situation and there were no years I didn’t know where he had gone. In the late 1980s, external checks on how the place was run. Over the next Paul ended up in the Cork Regional Hospital with a burst 18 months, meetings began and professionals were brought appendix. Not much was said to me, as the youngest sibling in to see what might be done for Paul. In May 2003 I was (also ‘seen and not heard’). I know I did ring the hospital, asked to step back and allow the HSE to do their job and but because I was under 18, I was ignored. Later, in 1990 I follow the recommendations given to help Paul. I knew found out where Paul was and I got the courage to go to see leaving that day that nothing would be followed through him. I knew it was right thing to do, and that it wouldn’t if the spotlight were removed. Within six months all of the be a welcome visit. I rang the bell and I must been waited planned changes were stopped and the recommendation over half hour before they brought Paul out. The man I for Paul to leave within 18 months didn’t happen. So his expected to see was not the man standing in front of me. He voice was quietened, I was silenced and the old routines was frail, sedated and a very frightened. But what struck me continued. was that he recognised me, and for a fraction of a moment, I continued to visit Paul, to watch and observe both he allowed me to see that he was ‘still in there’. That day I him and the place he had to call home. Paul would come

22 FRONTLINE Winter 2015 out dirty, and in clothes 2-3 times too big for him. All I grow and show that his spirit was still very alive. I started ever heard was that Paul was to blame for all of it, with from when I had known Paul as the little boy, not the adult no acceptance of responsibility by the staff. There were up with the labels. I had to become his voice, psychologist, to thirty inmates at any time, all with varying psychiatric behaviourist, carer, sister, family, tutor and mentor, salt, o.t. needs, and only medication as an intervention. Most of and every other role he needed. But , the most important the inmates had an intellectual disability which added to thing was that Paul was still the person I remembered, and I the difficulty in understanding their individual needs. All knew there was a lot more to him than met the eyes. Despite the staff had psychiatric training, but none had intellectual the many challenged we experienced, really all he needed disability training; I could see problems without ever was the right person with the right support to help him understanding anything about how the system worked. communicate without words. I became his multidisciplinary In 2005 I stopped listening to everyone else and began to team, so he could move forward. hear Paul. He needed someone to listen to him, and even Once again we had to publicise the continuing problems at after all the case conferences, I wasn’t listened to either, as his care-institution. The Equality Authority listened and an his sister. I continued to observe the place, but Paul needed investigation was carried out, with more recommendations. me to believe in him and his voice, so I began to educate But in 2010 and 2011 things got very serious: head gashes, myself. I studied about special needs, ABA, and about Paul’s epileptic seizures, rapid changes in medication, medication medication. I started to bring Paul to my home in Ennis, to not given when he was coming out for weekends, blows to get a clearer picture of who he was—without all the labels. his face and not being told of incidents, 22 staples to his Staff had tried to make me be afraid of Paul, but I can truly head, 18 teeth extracted. One staff member said to me that say I never felt threatened or afraid of him. I got to know Paul would be killed in there if something wasn’t done. No Paul , and although I knew the journey was going to be one has been held accountable for any incidents and reports hard, I knew we would get there. didn’t reflect the truth of what had happened. More problems became evident in the place Paul lived— I was under great stress and worry, trying to protect Paul he would have bruising on backs of his legs, his face, in that setting—with their word against mine. According to continuous gashes to his head and black eyes. When I them, Paul was receiving the best of care. I was dealing with questioned his presentation, the intimidation I encountered intimidation, as much as PAUL was. Many weekends I found for looking out for the welfare of my brother and the care he it hard to go to Cork, but I knew that once I had started this was encountering, was far from pleasant. In 2008, I ended up journey in 2007 there was no stopping until Paul was safe. taking the case to the Equality Authority for Paul’s human I heard that staff were suffering from the stress I was rights to be heard. causing. The sarcasm in Paul’s files made unpleasant In the meantime, during his visits to Ennis, I had come to reading, but I continued to document what I saw. Money understand Paul’s ways of communicating without words. was provided to ‘do up’ the place, but no one dealt with the He used his hands and thumbs to indicate different things, problems of care. I reported an incident to the Guards three and I learned about the side effects of his medication. times, before anything was written down—and still nothing Slowly he began to relax more—as he learned that he could came of it. trust me and that was listening to him. I learned different I was shown many places that Paul could transfer to, but strategies to help eliminate Paul’s stress slowly he began to nothing seemed different from where he was. I believed Paul

FRONTLINE Winter 2015 23 FAMILIES

deserved a home of his own, not just a building, but a home and he is embracing a life with both quality and quantity life. I wanted Paul moved to Ennis, closer to where I lived, in it. Paul is growing into the man he is meant to be and nearby if anything happened to him. no longer lives in fear. He has begun to hum to music and Paul finally received an appropriate diagnosis: autism, is slowly learning some sounds to mean yes or no. So again with sensory and environmental overloads. In November of nothing is impossible and he may finally believe he truly 2013, after eight years in residential care as a child and 31 has something to say in words because he knows it will be years in a lock-up institution, Paul finally left institutional listened to. care. He now lives in his own home with support staff. All Paul still has a lot of learning to do, but he can do a lot the one-on-one work I had in place has been transferred of teaching. After all our journey together, Paul has shown into the service. His communication methods are finally that it is never too late to change and learn new things. He seen for what they are, and understood. He no longer closes was a determined man who wanted to be heard. Now, I can himself off and the intense tension he had in his body is watch him from a distance, seeing him grow in independence gone. He knows as long as I am near, he will always be safe. because his voice is finally heard by those who support him. Supporting staff are very aware of his past and triggers, so When he needs me to support him, I will stand beside him he can stay in the moment and look to a bright healthy and we do it together and when he needs a speaking voice, I future. He is slowly gaining back his identity and going will speak on his behalf. I knew that I was taking huge risks in forward independently. His clothes do not have name labels speaking up for Paul along our long journey. But I had made on them; no one else wears his clothes. His environment a promise to him and I had to keep it. There is no justice for is suited and adapted to his needs. He is supported to those who are vulnerable in care; even though Paul’s injuries maintain his own home and to learn the skills of personal spoke a thousand words, but they were not enough. hygiene, laundry, cooking, cleaning, paying bills and he I know some people are fearful of HIQA coming in, but is becoming integrated into his community and meeting something is needed to protect all the Pauls of this world. new friends. He is beginning to understand about his own At least HIQA is one safeguard. Families should not be money, having treats like hot chocolate or ice cream, etc. discriminated against for speaking out about inadequacies He has a passport, travel pass, bank account—all in his own in the care of their family member. Doctors need to listen name as an independent individual. Paul has grown a lot to families—they know their child or sibling. Organisations in the short space of one year. The self-injurious behaviour need to welcome and listen to families, not push them away. strategies he had adopted to survive are now much reduced For society to change, we need to LISTEN.

24 FRONTLINE Winter 2015 OLDER PEOPLE WITH A LEARNING DISABILITY: ARE THERE FAMILY-FRIENDLY OPTIONS IN CARE DELIVERY?

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.

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. Introduction Watchman highlights the significant issue of lack of Watchman (2014) summarises some of the dilemmas support for family carers (Gilbert et al 2004, Watchman encountered when making decisions about the care of 2004) which leads to isolation and a feeling that more people with learning disability and dementia. In this expert care is required. Watchman also identifies research article I will discuss older people with a learning disability to outline the positive aspects of ageing in place. Given with and without dementia. Referrals to generic services that people with a learning disability often find change such as nursing homes can also take place when the very difficult and are exposed to significant change in individual’s physical health needs exceed the capacity of their lifetime, clearly an option which prevents a change the current care giver(s), regardless of the diagnosis. of living environment is an attractive one. This is also This, coupled with the increasing life expectancy of the an option which ensures minimal disruption to family general population (including citizens with a learning contact. disability), suggests that the debate in relation to supporting this subset of population is one which will be In-place progression ongoing. The 2nd option in Janicki and Dalton’s model for people In this article I am keen to discuss the idea that the three with a learning disability and dementia is ‘in-place options of care for older people with a learning disability progression’ (Janicki and Dalton 1999). This refers to a outlined below can be more closely linked, rather than move to, or creation of, a dementia-specific environment being separate entities. Furthermore, these options can for people with a learning disability. Watchman states that be considered with reference to reducing the risk of social it is the option least often seen. Absence may be due to care isolation and disruption to contact with relatives and providers not being equipped or financed to adapt premises loved ones. One potential proposal is the idea of ‘inreach’ in order to accommodate people with a learning disability into nursing homes to ensure a good quality of care and and dementia. subsequently a good quality of life for service users. The inreach role can play a significant advocacy role in relation Referral out to clinical aspects, in addition to identifying communication The third option ‘referral out’ involves a move for the issues and any barriers there are to meaningful social person with a learning disability to a generic social care interaction. A vignette will hopefully help illustrate this environment usually a nursing home. Watchman outlines

FRONTLINE Winter 2015 25 FAMILIES

research questioning the suitability of such a model Vignette (Michael and Richardson 2009). An important factor is A service user’s physical health needs exceeded the capacity of the pre-existing difference in communication between local services due to the number of people required to turn her those with, and those without, a learning disability. In an to prevent bed sores and to ensure that she was able to leave environment where staff-to-service user ratios can be low, her bedroom. An exploration was carried out by the local not having the ability to make one’s needs heard can be a community learning disabilities’ team jointly with the family, huge issue. Other considerations, such as the lack of a peer looking to identify the most accessible nursing home for the group and social activities not being pitched at a suitable family members to visit. Multidisciplinary staff continued level, can also impact on the quality of the placement. to be involved in an inreach capacity to ensure that nursing Furthermore, nursing homes maybe geographically located home staff were familiar with the specific needs of the service in places where it is difficult for relatives to visit the service user, and that every effort was made to facilitate positive users. contact with family members. Given that some of the family Thompson and Wright (2001) noted the frequent members visiting were children, it was felt that contact inappropriate placement and referral out of people with outside of the nursing home would be preferable on occasion. learning disabilities to generic older people’s services. This A timetable was drawn up to ensure that the service user was can sometimes happen as an emergency, but as Hussein dressed and sitting in communal areas for significant periods and Manthorpe (2005) state, it can also happen, for every day. This reduced isolation, and made it easier for example, because of hospital closures. relatives to go out with the service user, therefore maintaining a good quality of life. It was highlighted to nursing home Inreach staff that the service user’s communication difficulties could In my current role, I provide learning disability psychiatry easily lead to her needs to spend time with others not being input into two counties in Ireland and there are more than seen as a priority. 20 service users with a learning disability placed in nursing homes. In some cases this was the service user’s choice, or Summary the preference of the family, but in the majority of cases it Keeping service users in environments familiar to them was the result of the physical health needs overwhelming when their needs change, or upgrading their environments local services. A typical example would be where more than to meet their emerging needs, should be the gold standard two staff are required to turn the service user to prevent for older people with a learning disability. However, if bedsores, which would lead to the community placement referrals to generic environments take place, it is important breaking down. to support such placements and the service users to ensure Ageing in place and in-place progressions are aspirations good quality care and quality of life. A vital aspect of a for local services. Dementia training is a priority and there good quality of life is maintaining positive contact with is a proposal to set up a joint local facility with the team families, relatives and loved ones. Community learning for mental healthcare of older people. The community disability teams can play a coordination role regardless of learning disability service can provide a central link in which option is chosen. coordinating such placements, providing an array of care options. However given the number of existing nursing References home placements and the possibility of more referrals Gilbert, T. 2004 Involving people with learning disabilities taking place, it has been important to start to set up an in research: Issues and possibilities, Health and Social Care inreach service with four major functions: in the Community 12 (4), 298-308. 1. A psychiatric assessment and treatment service for service users with or without dementia in nursing HIQA 2013 National quality standards: Residential services for homes. adults and children with disabilities, 2013. 2. A health advocacy role to ensure that service users’ Hussein, S. and Manthorpe, J. 2005 Older people with physical health needs are adequately addressed, an often learning disabilities: Workforce issues, Journal of Integrated neglected area (Michael and Richardson 2008). Care 13 (1), 17-23. 3. A social advocacy role to ensure that social communication issues, for example, do not negatively Janicki, M.P. and Dalton, A. (eds) 1999 Dementia, aging impact on the service users’ ability to integrate into the and intellectual disabilities: A handbook. Philadelphia: nursing home environment. Brummer/Mazel. 4. A training and education role, which can be informal through meetings with staff or formal by inviting Michael, J. and Richardson, A. 2008 Healthcare for all: The nursing home staff to learning disability-specific independent inquiry into access to healthcare for people training. with learning disabilities, Tizard Learning Disability Review 13 (4) 28-34. The aim is to use HIQA (2013) standards as a template Thompson, D. and Wright, S. 2001 Misplaced and forgotten? for the inreach service. HIQA is a regulator of community People with learning disabilities in residential services for learning disability services in Ireland. By addressing these older people. London: Mental Health Foundation. areas, covered amongst numerous others by the HIQA standards, it is envisaged that some of the challenges Watchman, K. 2014 People with a learning disability and encountered in generic environments by people with a dementia: Reducing marginalisation Australian Journal of learning disability can be overcome. Dementia Care 2 (6), 31-4.

26 FRONTLINE Winter 2015 HEART SURGERY

DOWN SYNDROME AND HEART SURGERY

Freddie Wood explains in detail the various heart conditions that can affect those with Down Syndrome.

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 I HAVE BEEN VERY PRIVILEGED over three decades of infants with Down Syndrome may have is complete AVSD. professional life to treat many babies and children with This involves an egg-shaped defect at the base of the heart, Down Syndrome. resulting in an ASD, VSD all as on hole and clefts in the Down Syndrome occurs approximately one in every left AV (mitral) and right AV (tricuspid) valves making the 650-1,000 live births. Congenital heart disease occurs in valves ‘common’. All of this results in a ‘torrential’ left- approximately 40% of these individuals, predominantly to-right shunt and consequent heart failure. This defect is ‘pink’ as against ‘blue’ ‘Pink’ congenital heart disease occurs more common among children with Down Syndrome than from a left to right shunt, when there is a communication in the general population. Indeed, it is the commonest from the high (left) pressure side of the heart, to lower congenital heart defect in Down Syndrome. Repairing the (right) pressure side. This then results in excessive flow defect requires quite complex open-heart surgery. The left AV through the lungs compared to the systemic circulation. (mitral) valve has to be reconstructed, the VSD patched, the Because of this excessive flow through the lungs, the babies ASD patched and, frequently, the right AV (tricuspid) valve frequently develop high-output heart failure, failure to repaired. The surgeon is operating close to the conduction thrive, get repeated respiratory tract infections and rapidly (pacemaker). The survival rate for this procedure is develop pulmonary hypertension. This is a condition approximately 96-97%. A pacemaker may be necessary in 2-3 where the blood vessels of the lungs react to the excessive % of those affected. Reoperation for a leaking mitral valve is blood flow and attempt to control it by going into spasm required in 5-6 % of cases, over 3-10 years. The vast majority which, after a period of time, becomes permanent. When recover very well and have a life expectancy of 50- 65 years. this occurs, the babies come out of heart failure and start It is not known what exactly will happen with the left AV to thrive, but their overall life expectancy is then reduced (mitral) valve, as it is quite mis-shapen compared to normal. significantly to between 15 and 25 years approximately— There is some evidence that these valves may need to be maybe a little longer with present medication. replaced when the individual reaches their late twenties or Children with Down Syndrome develop pulmonary early forties, however this may only become clear in the next hypertension more quickly than children in the general 10-15 years. population, usually at around 12-15 months, and it can It has been most rewarding that all the children who have become permanent from 18 months (generally). As a had surgery have reached their milestones, as if they had consequence, these babies need surgery/intervention no heart disease. Indeed, 30 years ago, this surgery was not anywhere from 4 months of age to 1 year, in order for them offered to babies with Down Syndrome because of what to have the same life expectancy as children with Down was considered very high risk. Having pioneered it in the Syndrome who do not have heart disease. 1980s, it is very rewarding to see so many thriving, from a The conditions which cause this are Patent Ductus cardiac point of view, and that it is now standard to offer Arteriosus (PDA), Ventricular Septal Defect (VSD), Partial this surgical treatment to all children with Down Syndrome. Atrio Ventriculo Septal Defect (PAVSD) and Common Atrio Lastly, I have found it remarkable how the boys and girls Ventriculo Septal Defect (CAVSD). with Down Syndrome have become the centre of their PDA can be very effectively treated in the catheter Lab by family’s life, binding everyone together.

FRONTLINE Winter 2015 27 FRONTLINE

FRONTLINE: REFLECTION ON THE HARD-COPY YEARS Colin Griffiths looks back at twenty-five years of Frontline magazine in print.

SO FAREWELL THEN, Frontline magazine as we know it. It their stock in trade. Since Stephen took over the editorship is twenty-five years since Frontline first saw the light of day Frontline,while retaining an academic focus, has become and in that period much has changed. People with intellectual more ‘people friendly’. This is a welcome development disability have moved out of congregated settings and into as the involvement of people with intellectual disability ‘ordinary’ houses. Many people have got jobs in shops, factories, and their families has deepened and I think become more workshops and service industries all over the country. Also in influential. that time Ireland has become a multilingual, multiracial society. Part of the vision of the editorial board was that a copy of In short, difference has thrived, and in that space people with Frontline would be available in every centre, preferably in disabilities have become recognised to a great extent as the same houses and places where people with intellectual disability lived as everybody else. and worked and spent their time. In other words, the magazine It has now become commonplace that communities proudly would be ‘around’, people with intellectual disability, staff and announce that they are inclusive, and within these places family members would be able to just pick it up, glance through people with intellectual disability find it possible to lead a more it, read an article if it interested them, or use it to light the fire fulfilling life. Most people do, but not all, because there is no if not! In short Frontline could become like Hello magazine, universal panacea for the legacy of the old institutions and the ubiquitous and influential on that account. I do not think that old institutional ways of thinking that still cling on. But most this goal was ever fully achieved, certainly some centres and do live better lives, lives that they have more influence over and services took multiple copies and spread them around, but lives that can be called lives of quality. To some extent I think others kept them in libraries where they had to be sought out; this is attributable to the Special Olympics of 2003—surely a still others had never [and still have not] heard of Frontline. seminal event in the growing understanding of what inclusion What was Frontline? At its best, it was a source of information means in practice. Also it seems to me that Irish society has and entertainment. It told what people with intellectual opened up; it always was a welcoming society, but even more so disability, their families, those who worked to support them these days. Despite the pressure of the recession, Ireland remains and others were doing. It offered a kaleidoscopic perspective a place where people are welcome. Having acknowledged the on the issues of the time; hard-edged research co-existed with progress that has been made, the revelations of abuse that have reports of fun days out and garden fêtes. The achievement of recently surfaced, and the general sense that HIQA inspections such an all-inclusive perspective was quite unique. In addition, have uncovered services that are imperfect at best, leave an it provided a place for people with intellectual disability to tell uneasy feeling. some of their stories, for their families to explain their joys and However, I take the view that even the apparently incessant sorrows, and for all to articulate their hopes for the future. bad news emerging from the intellectual disability services sector As a source of information Frontline was both very powerful holds a silver lining. I think, firstly, that most services are doing a and at times quite patchy. As a space in which opinion about good job of providing quality and also that those that are not are the issues of the day in the sector in Ireland could be articulated getting a severe reminder that poor service will not be tolerated it had no equal. However, in the end I think Frontline was and, secondly, that those people who treat service users with essentially a place to meet one’s friends. intellectual disability without kindness have no place working I will miss it as the magazine rides off into the sunset. with or being around them. However,r the new digital dawn is upon us and Frontline,like As editor of Frontline in the early years of the last decade, every other form of print media, has had to adapt. The new I found that four times a year I was under pressure to format will be more flexible and hopefully more accessible, ‘get the copy in’. This was perhaps easier for me as I was even though we will have to access it from our phones, tablets working in the academic sector and academics love the and whatnot. I think over the next 25 years, Frontline will be opportunity to get a publication out in the public arena equally as important as in the last 25. It will, in fact, be the swiftly. Furthermore, they can write—after all, words are same but different.

28 FRONTLINE Winter 2015 FRONTLINE: LOOKING BACK

Mary de Paor looks at the early years of Frontline and has a peep at the future in its new online incarnation.

THIS FINAL PRINT-ISSUE of Frontline marks 25 years readers, professionals, frontline workers and parents. Some of publication—a total of 97 issues of the magazine! In have been able to give their time to the magazine for two the spring of 1989, as people entered the Brandon Hotel or three years; others have stayed involved for over twenty. in Tralee for the AGM of NAMHI, two gentlemen were Seven editors have successively taken on the responsibility making a pitch for a new magazine called Frontline. Over of getting 32 pages ready for the designer and printer four the previous six months, John Saunders, Tony Darmody, times each year. (Doing the sums, one can see that there Patrick McGinley, Chris Conliffe, Seamus Dunne, Patricia were only three glitches in meeting those deadlines during Walsh and Bob McCormack had worked with publisher the 25 years.) Nick Maxwell of Wordwell to bring Frontline into being. For all of its first two decades, Frontline was published by They had determined that there was a need for an Irish Nick Maxwell and Wordwell. Nick worked patiently with magazine that would: successive editors, demanding 32 readable pages, maybe a ■ ‘meet the needs of frontline workers and parents; little controversy occasionally, and more pictures please. ■ report on major research areas which are of interest to He and his staff always managed to slot us in between staff and parents, in a readable, intelligent way; the production deadlines of his higher-profile magazines ■ report on “good practice” in service developments in and book publishing. He was never forthcoming with such a way as to facilitate others implementing it in detailed accounts, but we all knew there was loss, rather their own service setting; than profit, in the ledger. Finally, in 2009, he suggested we ■ describe the real situation, even if this entailed should take control of our own affairs, and the members controversy; of the editorial board established a not-for-profit company, ■ adopt an independent advocacy role in relation to ‘Frontline Magazine Limited’. Fortunately, we were able to people with a mental handicap [sic] and their families. call on the design services of Niamh Power for a further This would include material written or co-written by three years, and she led us to our current designer Niall Ó clients and material written for more able clients; Laoghaire—who is now helping to bring the magazine into ■ encourage acknowledgement of the limitations and the new era. problems of new developments or approaches, as well as After 25 years, Frontline will now adapt to the all- describing the successes.’ embracing world of the internet at our fingertips and social media giving instant communication and feedback. Those It is a little ironic to read the ‘market penetration’ hopes of us who still prefer paper-page reading to screen-scrolling held by that first editorial team: ‘Most staff do not read. A will understandably regret the loss of the print magazine— proportion of parents are reading avidly, seeking practical and we apologise for that. But production/printing help in working with their child. The total market is about costs for small-run magazines have become prohibitive. 30,000 families and 5000 staff and ... agencies ... might However, Frontline will be able to engage much more fully be willing to circulate a flyer to members of their parents with our Irish (and international) intellectual disability and friends association.... Libraries and consultation community in an online format. waiting rooms are another potential market, including I’m still pretty much a twentieth century person— libraries outside Ireland.’ Frontline did become established fifteen years into this scary century, I’ve only had my in a vital, if modest, niche in the Irish learning disability smarter-than-me Samsung mini mobile phone for a few community, and it has managed to continue in that role months. New editorial board members will be able to bring for a quarter of a century—but its market penetration about the changes necessary for an up-to-date and more never developed beyond a few hundred subscribers, made interactive magazine—I, and I hope all our readers, wish up of service organisations, individual professionals and them every blessing in the work. families. The content of Frontline has always been overseen by (If you can offer your skills to Frontline, please, please contact a voluntary editorial board, members who are, like the our editor Stephen Kealy.)

FRONTLINE Winter 2015 29 Disability Psychotherapy Ireland Interest Group In association with the Irish Institute of Psychoanalytic Psychotherapy 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

Email: [email protected]

Address: 107 Lower Baggot Street, Dublin 2.

Tel: 087 4120758

30 FRONTLINE Winter 2015 BOOK REVIEW PEN & PALETTE: BOOK REVIEW Reviewed by Jean Spain

Mc Loughlin Family at the launch of book “Pen & Palette” by graduates of the Certificate in Contemporary Living (CCL)

PEN & PALETTE IS A book of poetry and paintings by people the publication of this wonderful book. with intellectual disabilities who are past and present students on The art work is full of colour and makes you look closer for the the Certificate in Contemporary Living Course at the Nation- full meaning of what the artists are telling us. Their honesty re- al Institute for Intellectual Disability (NIID) in Trinity College ally takes your breath away. Then there is the poetry—some very Dublin. sad, others filled with happiness. The following two poems are The book was sponsored by the Margaret Mc Loughlin Fund. just an example from this beautiful and thought-provoking book. Margaret was born with Down Syndrome and a serious heart In the preface to the book, Brendan Kenneally describes disability condition. When she died ten years ago, after living into her 20s, “as a mask that conceals a rich, surprising and fertile ability.” I see this her family established the Fund in her honour, to support and as a book as a wonderful work, a celebration of the many talents of develop the creative skills of the students as part of their educa- people with intellectual disability when they are allowed to express tional experience in Trinity College. The family now wanted to their feelings. celebrate Margaret’s anniversary—and what better way, than by

Daddy Here in the Connemara cabin by Sandra Flynn by Derek Murphy Here in the Connemara cabin Not at home anymore When we hear the music Because of my disability? When it plays loud We all dance Divorced, We were at mass (don’t you love Mammy anymore?) We had communion But now the music has started Please-- We’re glad. Come home. It is so nice (I’ll be better I promise.) When it plays loud We’re happy that the music is on I miss the way things used to be. We like the quiet as well.

FRONTLINE Winter 2015 31 RONTLINE FNOW FREE ONLINE, with an extensive archive of back issues www.frontline-ireland.com