THE IRISH VOICE FOR IN T ELLEC T UAL DISABILI T Y Volume 94 ● Spring 2014 F RONTLINE ASSISTIVE TECHNOLOGY DECISION MAKING — PALLIATIVE CARE — BRAZIL CONTENTS F RONTLINE Volume 94 | Spring 2014 FEATURE: ASSISTIVE TECHNOLOGY 20 ASSISTIVE TECHNOLOGY IN OUR LIBRARY Stephanie Lynch & Kathleen Cooney 21 POURING MY TEA Stephanie Lynch 22 THE NETWELL CENTRE ANd CASALA—ENHANCING 27 BETTER NIGHTS, BETTER dAYS LONGER LIVING IN SMARTER Phillip Moorcraft & Tim Riegman PLACES Julie Doyle 28 accessible services for EVERYONE 23 ASSISTIVE TECHNOLOGY: Eoin O’Herlihy NEVER MORE ACCESSIBLE OR 16 ENABLING ENVIRONMENTS: ‘INVISIBLE’ 30 UNDERSTANDING ANd A STEPPING STONE TOWARDS Kevin Hoey DEVELOPING THE EXPERIENCE INDEPENDENT LIVING OF ASSISTIVE TECHNOLOGy Patricia Regan 24 ALTERNATIVE ANd USE AUGMENTATIVE Dr John Dinsmore COMMUNICATION ANd ASD 18 STORY TIME IN LITTLE Stars Clare Hudson CRÈCHE FeatURING JACKIE 31 LISTENING TO THE SILENCE: HOW ASSISTIVE TECHNOLOGY AND SOPHIE 26 MAKING MY hOME WORK CAN HELP OR HINDER THE Joan Nolan & Stephanie Lynch FOR ME GUIDEBOOK THERAPEUTIC PROCESS Alan Corbett REPORTS MAIN ARTICLES 5 NATIONAL hOME-SHARING 8 DISABILITY: CHALLENGES AND ANd SHORT BREAKS POSSIBILITIES NETWORK, BIENNIAL Marie Murray CONFERENCE: STEPPING FORWARD Joanne Hayes 11 FAMILIES ANd hIGH-QUALITy INDIVIDUALISEd SUPPORTS 6 SITTING AT THE EDGE OF 15 DUBLIN SMART TOURISM INTELLIGENCE Paul Doherty GUIDE, dUBLIN: DOWN Eimir McGrath SYNDROME IRELAND, 2013 Reviewed by Niall Power and 12 APAE: A LOOK AT HOW THEY Mary de Paor 7 THE ASSISTEd dECISION- DO IT IN BRAZIL MAKING (CAPACITY) BILL Ciaran Leonard 2013: WHAT DOES IT MEAN? REGULARS Mary de Paor 03 Editorial 14 CHILDREN’S pALLIATIVE CARE IN IRELAND 04 News from Inclusion Ireland Louise Neary & Claire Quinn Siobhán Kane 2 FRONTLINE Spring 2014 FROM T H E E D ITOR CREDITS Editor Stephen Kealy ASSISTIVE TECHNOLOGY It is always interesting and enjoyable to watch youngsters Editorial Board Mary de Paor use electronic equipment with such ease, with no inhibition Owen Doody in finding out how a particular piece of hardware (with its Mitchel Fleming accompanying software) works—maybe with lots of trial and Colin Griffiths error, but focused on achieving their goal. Children as young Siobhán Kane Stephen Kealy as 18 months are enthralled by a single switch operation on Siobhán MacCobb an iPad or other electronic devices. Looking at students at a Michael McKeon university lecture highlights the ubiquitous importance of the Kathy O’Grady Darshini Ramasubbu laptop. Many National Schools have multimedia available in the Jean Spain classroom and many pupils have access to iPads or laptops. The Michael Teehan potential of technology is quickly being explored in every educational, social and community Angelina Veiga setting. To underestimate its importance and relevance to people with intellectual and Published by other disabilities would be a serious error of judgement that could possibly be expressed Frontline Magazine Ltd. in a reluctance to fund greater learning and independence options for them. This issue of Frontline has the theme of assistive technology. It only scratches the surface of its enormous Design and Production possibilities for the disability community, the elderly and for people who are vulnerable for Guilder Design, [email protected] other reasons. Louise Neary and Claire Quinn’s article on palliative care highlights the need to provide Printed by a personalised approach for people with intellectual disability who are nearing the end Opus Print of their lives. Some people with intellectual disabilities need hospice care; some services ISSN 0791–1270 address this need, but a lot more need to do so. Published Quarterly Referenced in the Inclusion notes is an interesting development in the Oireachtas, TD Finian McGrath’s private member’s bill seeking the right, without having to go through a resource-expensive process, to receive additional teaching hours for pupils with Down Syndrome. There is an enormous amount of international research filling many library shelves that highlights the difficulties that children with Down Syndrome experience with communication and language expression and, in particular, the type of teaching and supports that are so important to helping them to live more independent lives. However, a diagnosis of Down Syndrome does not mean each child’s needs are exactly the same Frontline Magazine Ltd. is a ‘not for and assessment of those needs will ensure that those children with more complex needs profit’ organisation, formed solely receive sufficient resources to participate fully in a learning environment. Hopefully Finian to publish the magazine Frontline. Copyright resides with the individual McGrath’s initiative will eventually be expressed in a Department of Education circular authors, but permission to reproduce recognising what is already so well known internationally. any article must be obtained in writing In January 2015 Frontline will become primarily a web-based publication. It has become from Frontline. Views expressed in Frontline are those an increasing challenge to produce the print magazine for a limited number of subscribers. of the authors themselves and not nec- Electronic publication will considerably reduce costs, while reaching a much wider and more essarily those of the editor or editorial interactive readership. As yet, no decision has been taken on the cost, if any, of subscription board. for the new format. The change will hopefully be quite seamless, and we will keep Letters to the editor are welcomed. Name and address should be provided; subscribers alerted to how the project progresses during the coming months. Meanwhile, they will be published unless otherwise you can be assured that Issues 95, 96 and 97 will still arrive to you in the familiar printed requested. format. Articles may be submitted for possible publication in Frontline. Guidelines for authors are available from the editor. The Board of Frontline are seeking expressions of interest in the position Items on meetings, conferences etc. of Editor. The position is voluntary and for a three year period. For further should be submitted well in advance of information, please contact: [email protected] events, to meet the magazine publica- tion schedule. Frontline editorial address for letters, Contributors to this issue: articles and other items for inclusion: Kathleen Cooney Kevin Hoey Marie Murray Frontline Magazine Ltd. Unit C2, The Steelworks Alan Corbett Clare Hudson Louise Neary Foley Street, dublin 1 Mary de Paor Siobhán Kane Eoin O’Herlihy E-mail: [email protected] John Dinsmore Ciaran Leonard Niall Power Website: www.frontline-ireland.com Paul Doherty Stephanie Lynch Claire Quinn Subscriptions: Julie Doyle Eimir McGrath Patricia Regan [email protected] Reg. Chy No: 18745 Joanne Hayes Phillip Moorcraft Tim Riegman FRONTLINE Spring 2014 3 NEWS U P D ATE News from INclusIoN IrelaNd by Siobhán Kane Communications & Information Manager Waiting lists for therapy services over two years in mental health problems. It found these parents are almost some areas twice as likely to suffer from depression as other parents, and Data released by the HSE shows waiting lists of over two years are also at a greater risk of physical ill-health, with respiratory in some areas for therapy services such as occupational or diseases, arthritis, back pain, digestive complaints and diabetes speech and language therapy. Approximately 2090 children are particularly prevalent. Fifteen percent of parents of children waiting at least twelve months for occupational therapy. There with disabilities were classified as depressed, but fewer than are also lengthy waiting lists for speech and language therapy, half of them reported being treated for depression. The study with 1940 people waiting a year or more for an assessment. used data from the national Growing Up in Ireland research A further 2983 had already been assessed as requiring a project. The study co-author, Dr Stephen Gallagher, from service, but have been waiting at least a year without a reply. the Department of Psychology at University of Limerick, said In response to these figures, the HSE said it is rolling out ‘providing care to a child with a disability can often be very reform under the aegis of the Progressing Disability Services stressful. When parents lack the resources to manage the for Children and Young People project, which will provide for difficult situations they are experiencing their health is likely a more equitable and consistent way of providing services for to suffer. Moreover, if their condition goes untreated the ill- children with disabilities. It also said 80 additional therapeutic effects can extend beyond the parent to influence the whole staff are being recruited. Speaking on Today FM’s The Last Word family.’ Dr Gallagher urged for greater supports for families. programme, Inclusion Ireland Advocacy Officer Mark O’Connor The study was published in the international journal Research said the additional 80 posts are a welcome development, in Developmental Disabilities, and was co-authored by Dr ‘provided they go into the right areas’. He said there are Gallagher and Professor Ailish Hannigan from the Graduate particular blackspots around the country where service levels Entry Medical School, UL. are very poor. He also said Inclusion Ireland receives calls from parents whose children haven’t had occupational or speech Government urged to strengthen children’s rights and language therapy for years on end and this is ‘detrimental under UN protocol to their child’s development’. The government has been urged to ratify the optional communications protocol to the UN Convention on the Rights Legislation on resource hours for children with of the Child, so children whose rights have been violated can Down Syndrome overcomes first hurdle complain directly to the United Nations. Under this protocol, A Bill is progressing to committee stage in the Oireachtas children, or their representatives, can submit complaints that will give children with Down Syndrome an automatic directly to the UN Committee on the Rights of the Child. entitlement to resource teaching hours.