The irish voice for in t e l l e c t ual disabili t y Volume 94 ● Spring 2014 f r o n t l i n e

assistive technology

DECISION MAKING — PALLIATIVE CARE — BRAZIL CONTENTS f r o n t l i n e 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

 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  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. The Bill was introduced However, the government must first ratify this protocol. The in early February by Independent Dublin TD Finian McGrath, protocol will officially come into force in the coming months, who has a daughter with Down Syndrome. Under usual as it has been signed by ten countries, including Germany, practice, when a Bill is introduced in this way by an opposition Portugal and Spain. A spokesperson for the Minister for TD, it is voted down by the government parties and does Children Frances Fitzgerald TD, said the matter of signing the not progress any further. However, in this instance, Deputy protocol is under consideration in the Department. McGrath’s Bill is being allowed by government to proceed to committee stage without a vote in the Dáil. If enacted, €30,000 HSE funding available for 2 individualised the Bill will add Down Syndrome to the list of disabilities for funding placements which individual resource teaching is automatically provided. The HSE has made €30,000 available for two individualised A spokeswoman for Education Minister Ruairi Quinn said the funding placements in the Kildare/West Wicklow area. The decision to allow the Bill to progress to committee stage was money was made available through the brokerage organisation made ‘in the context of work the National Council for Special PossibilitiesPlus and is designed to provide an alternative Education (NCSE) is doing to find a new model of allocating day programme with a value of €15,000 per annum each. resources to schools in relation to special educational needs’. PossibilitiesPlus held an open competition for the places, The NCSE is expected to present recommendations to Minister following an information evening on the subject in late January. Quinn in the coming months on a revised system of allocating More information on PossiblitiesPlus is available via their resource teaching hours to schools for children with disabilities, website www.possibilitiesplus.ie. which could entirely replace the current system. The proposed new system would move towards a process based on allocating Inclusion Ireland to launch training calendar resources according to the individual needs of a child, not on Inclusion Ireland is launching a training calendar in March diagnosis. that will include separate training events for people with an intellectual disability, their family members and professionals Higher depression risk for parents of children with working in the area. Training will be provided on areas such a disability as wills, capacity legislation and HSE reforms that will affect A new study from the University of Limerick has found that how disability services are provided. There will be preferential parents of children with an intellectual or learning disability booking periods and reduced fees for Inclusion Ireland are at a significantly higher risk of developing physical and members. See www.inclusionireland.ie, or call 01-8559891.’

 frontline Spring 2014 CONFERENCE RE P ORTS NATIONAL HOME-SHARING AND SHORT BREAKS NETWORK, BIENNIAL CONFERENCE: STEPPING FORWARD

Joanne Hayes, Social Worker, Home Share Clare, on the need for respite highlighted at the NHSN Conference

The need for respite is regarded as a necessity and a crucial ‘shared living’. Contract families differ from short break families component in the provision of support to people with disabilities in that approved families/individuals are contracted to provide and their families. The word ‘respite’ has many connotations; it a specific number of overnight breaks a month. Shared living is generally understood to be an opportunity for the main carer offers permanent, longterm care in a family setting to adults to take a break or have a holiday. However, respite also provides with an intellectual disability. Numerous policy guidelines positive opportunities to children, young people and adults with recommend that if a person with disability leaves their disabilities to make new friends and enjoy relationships outside family home, either permanently or for a period of time, the of their immediate family circle. Home-based short inclusive substitute home should have all the characteristics of a good breaks with host families provide an alternative to traditional family home. Shared living invites people in the community to residential respite in specialist units and group homes. These share their life’s experiences with a person with a disability on breaks give people with disabilities and their relatives a break a full-time basis. This in turn can ensure individualised supports from their everyday routine and provide positive opportunities and the opportunity for a person with disability to lead a fuller, for real and sustainable social contact. more integrated life. The NHSN is an association of people and organisations With the aim of informing organisations who are about to engaged in using, promoting and providing home-based embrace this model of respite, presentations were offered on services to people with disability in Ireland. The association evidence-based practice guidelines. The process of individuals was founded in 2003 and provides governance and support or families becoming home sharers was discussed in detail, to host families and service providers. The vision of the NHSN including recruitment, training, assessment, report and approval. is in line with core values of social inclusion and person- Information was also given about the ‘Host Family Handbook’ centredness and it strives to develop good-practice guidelines which has been developed to provide host carers with a compact and standards for professionals. The association also aims to resource and reference guide of good-practice guidelines. In represent this growing sector on a national and international attempting to assure the creation of successful Host Family level. Breaks, a proposal for good-practice guidelines is also being On 31 October 2013, the NHSN Biennial Conference developed. These guidelines will attempt to provide a framework was held at the Ashling Hotel in Dublin. The theme of the which various organisations can work from and give a standard conference, ‘Stepping Forward’, celebrated the developments level of support to people with disabilities, their families and and successes of home-based breaks in responding to the their host families. diverse needs of people with disabilities and their families. Challenges were also highlighted throughout the conference. There were also presentations on training and support for host For example, maintaining adequate funding is an ongoing families and best practice guidelines at an operational level. struggle for many organisations. Moving from a traditional The conference was well received by host families and various model of respite provision to a family-based model is also organisations around the country interested in reconfiguring another challenge. Recognition in policy and legislation on a their traditional respite and residential care services. national level would assist in standardising this provision of The focal point of the event was the sharing of positive respite, ensuring that all stakeholders receive a minimum level of changes in people’s lives as a consequence of engaging in support. this model of respite. Key stakeholders voiced their lived A key strength of the NHSN is that in sharing information experiences. A ‘guest’ (person availing of respite) spoke about and knowledge, various organisations have the opportunity to how the consistent, continuous and caring friendship with her learn from one another and build capacity. To ensure that this host family has helped in overcoming some challenging times. supportive mechanism grows, members meet bimonthly with Another inspirational speech from a host carer conveyed a view to pooling resources, reflect on practice and strengthen the positive impact this experience has had on the whole levels of service provision. It was evident from the conference family in terms of developing awareness, acceptance and that access to quality community resources striving for social sensitivity towards disability. Informal networks of support inclusion and increased social capital is the way forward. With develop naturally through this model of respite, whereby both this in mind, the NHSH Conference ‘Stepping Forward’ was a families are aware of one another’s ups and downs, major life positive event that showcased cost-effective innovation in a time events, birthdays and celebrations. The testaments from these of austerity. stakeholders are a reflection of the strengths that are inherent in this model of respite provision. More information on the NHSN and the Conference can be Another highlight was the opportunity to learn from various accessed at: www.nhsn.ie/ organisations on setting up and moving through different types of hosting models. Some organisations have been providing short breaks or ‘home-sharing’ for over 30 years and in recent years have expanded to ‘contract families’ and frontline Spring 2014 To comment on this article, email: [email protected]  CONFERENCE RE P ORTS SITTING AT THE EDGE OF INTELLIGENCE

Eimir McGrath on a Seminar by Dr Alan Corbett, Teachers’ Club, Parnell Square, Dublin 1, 30 November 2013—hosted by Disability Psychotherapy Ireland

Psychotherapy for people with intellectual disabilities is an area of clinical practice that sadly is often overlooked. Specialist training is very difficult to access in Ireland, so the one-day seminar, Sitting at the Edge of Intelligence, was an extremely valuable opportunity to hear expert in the field, Dr Alan Corbett, speak of the key issues that need to be considered when working therapeutically with people with intellectual disabilities. Dr Corbett is a pioneer in the field of intellectual disability with over two decades of clinical practice experience. He was previously Director of Respond, the UK’s foremost clinic for learning disabled survivors and perpetrators of sexual crime. He was also National Clinical Director of the CARI (Children at Risk in Ireland) Foundation and Clinical Director of ICAP, an organisation providing psychotherapeutic support to the Irish community in the UK. He currently works in private practice and is a consultant psychotherapist, lecturer, researcher and author. The seminar covered the fundamental concepts and issues regarding disability psychotherapy. Notions of intelligence were explored, questioning the still-too-prevalent misconception that people with disabilities are limited in their capacity to engage in a therapeutic alliance. In examining the relationship within therapy, the rich diversity of communication that does not rely on verbal ability was discussed, especially transference and countertransference, and how this can be a means of communicating the inherent difficulties of living with a disability. Valerie Sinason’s seminal work, and the work of Anne Alvarez, were referenced regarding trauma, disability, and potential levels of therapeutic engagement. (Sinason 2010, Alvarez 2012). The issues that arise when considering assessment and consent for engaging in therapy were addressed, including the need for supports to ensure that the therapeutic process can be successfully undertaken. This led to discussion regarding Ireland (DPI) organised a Spring Series of Clinical Seminars the difficulties that can be encountered when working to provide space for clinicians to meet and discuss aspects of therapeutically within a system that may not be supportive of clinical work, as well as relevant clinical papers. This was very the work. quickly fully subscribed and an Autumn Series is now being Dr Corbett is a very accomplished lecturer and facilitator planned, along with another day-long seminar in November who shared his expertise through the presentation of which will be co-facilitated by Dr Corbett and Anne Alvarez, structured material that was clearly illustrated by his use internationally renowned consultant child and adolescent of case studies from his own clinical practice. This was psychotherapist. interspersed with space for interaction and dialogue between all participants that sparked a lively engagement. Overall, the For further information regarding forthcoming seminars, seminar was really well paced, with a good balance of theory and for anyone who has an interest in psychotherapy and practical information that held everyone’s attention for people with intellectual disabilities, please contact and invited participation, providing a very informative and [email protected] stimulating day. The seminar was extremely well attended and many Eimir McGrath is an accredited psychotherapist, play therapist, participants expressed the need for more training days supervisor and trainer who specialises in attachment, trauma, focusing on psychotherapy for people with intellectual and disability issues, as well as lecturing in psychotherapy, play disabilities. In response to this, Disability Psychotherapy therapy, disability studies, and dance.

 To comment on this article, email: [email protected] frontline Spring 2014 CONFERENCE RE P ORTS THE ASSISTED DECISION-MAKING (CAPACITY) BILL 2013: WHAT DOES IT MEAN? Mary de Paor digests a seminar held in Dublin explaining the Assisted Decision-Making Bill, 2013

An informative seminar on the Assisted Decision- assistance agreement, but they are approved by the court. making (Capacity) Bill 2013, was held on 6 February in the (The court can suggest the need for a co-decision maker, but offices of the European Parliament Information Office in it cannot force a person to have such an agreement). Again Dublin, organised by Inclusion Ireland, Leap and the Centre for decisions are made together by the person with someone Disability Law and Policy of NUI Galway. It was presented by Dr whom they trust, and that person makes an annual report to Eilionóir Flynn of the NUIG Centre. the Public Guardian. (At present the Bill does not include a Dr Flynn emphasised that the draft Bill is likely to be changed mediation mechanism, in the case where the person and the before it becomes law—hopefully this year. It will apply only co-decision maker may disagree on the reasonableness or safety to people over the age of 18, and it will not change laws about of a decision.) voting, marriage, mental health treatment or consent to sex. (Two days before the seminar, the Department of Health Enduring power of attorney had announced public consultation on a general scheme of An enduring power of attorney is an agreement that someone legislative provisions for advance healthcare directives, which you choose will make decisions for you once you consider will also be included in the Assisted Decision-making (Capacity) that your capacity is, or shortly may be, in question. (This Bill.) The Bill will apply to every citizen, not only to people who will replace the Enduring Powers of Attorney Act of 1996, but have a disability or a mental impairment. arrangements made under that Act will still apply.) A doctor Capacity concerns the ability to make decisions—involving must determine that the person has the capacity to make the ability to understand information, remember it, use or the decision for a power of attorney. The person states which weight it, and communicate it. In all decision-making situations, decisions they want to be made on their behalf and names the certain principles apply: that there is accessible information; person who should make them. The ‘attorney’ registers the that ‘unwise’ decisions may be made; that the least restrictive agreement and reports annually to the Public Guardian. In this intervention/assistance must be given, in protection of the case, decisions are made for the person—in the areas previously person’s freedom and rights; that the person must participate agreed. in the intervention; that their will and preference should take precedence; and that others who know the person well should Decision-making representatives be consulted where necessary. The ability to make decisions The person, or someone else, applies to the court when it is will be presumed, unless it becomes an issue in a specific felt that a decision-making representative is required—that circumstance. the person does not have the capacity to make a decision The Bill establishes the Office of Public Guardian whose role on their own. The court will determine that need and what will include raising awareness of the UN Convention and the decisions the representative can make. The representative Act, supervising decision-making assistants; appointing panels may be someone the person knows, or someone from the of representatives and court friends; managing a register of Public Guardian’s panel. The representative role will be agreements; dealing with complaints; and advising the courts. It primarily voluntary, but the person may be liable for their will also be essential that codes of practice are prepared for the expenses. The legal role and responsibilities of decision-making proper implementation of the Act. (It is still unclear whether representatives has not (so far) been spelt-out in the Bill. there will, or not, be a role for HIQA in any of these matters, or Wardships of Court will be reviewed within three years for the National Advocacy Service.) of the passing of the new Act, and co-decision-making or The Bill defines varying levels of assisted decision-making: representative decision making orders will be put in their place, assistance agreements, co-decision-making agreements, powers as determined by the court. of attorney, decision-making representatives, and informal decision-making. Informal decision-making The Bill also includes ‘informal decision-making’, which may Assistance agreements be seen as a kind of safety net for those (family members or Anyone who believes that their capacity is ‘in question or service providers) who currently make decisions on behalf of a shortly may be in question’ can make an agreement with a person, ‘as if they had capacity and authorised them to make trusted person, or persons, to advise them. The agreement is it’. Such informal decision-making must ‘comply with general notified to the Public Guardian (but it is not a court process). principles’ and not go against any agreement (assistant, co- The role of the assistant/s is not to make the decision, but to decision-making, or representative); it applies only for ‘personal help the person to communicate their decision and to make sure welfare matters’, not including financial matters. their wishes are followed. The person may cancel the agreement Dr Flynn urged her audience to keep a close watch on the at any time if they no longer have trust in their assistant—as progress of the Bill as it goes through further stages in the Dáil, long as the change is again notified to the Public Guardian. and to make their strong views/wishes known to their local representatives. Further information on the Bill is available at Co-decision-making agreements www.oireachtas.ie/documents/bills28/bills/2013/8313/b8313d. The decision for this kind of agreement is similar to the pdf). frontline Spring 2014 To comment on this article, email: [email protected]  FAMILIES

DISABILITY: CHALLENGES AND POSSIBILITIES

Marie Murray explains the intricacies and balances of the caring role for families.

The Inclusion Ireland Conference in June 2013 (in ■ Who was rejecting? Who was accepting? the Gibson Hotel in Dublin) was entitled ‘Hearing voice ■ Who was angry and with whom? and giving choice: Peer Support and Networking for self-advocates and families’. Two separate yet connected Disability and parental relationships sessions took place in the morning. At one session, In my own experience of talking with families when a self-advocates met to discuss their lives, their wishes, family member has a disability, the following issues have their views, their choices and their proposals with also arisen: regard to services and appropriate supports. This session ■ The story of the disability, how it occurred, whether at was planned and run by advocacy groups such as the birth or acquired, what it meant in the short term and National Platform for Self-Advocates, Connect People long term, how it was handled and understood at the Network and Seasamh, which ensures that service users time, who, if anyone, felt responsible or ‘blamed’. have representation and a say in organisational decisions ■ Whether or not parents could express sadness, that concern them. The concurrent family session in the disappointment and grief that their child would have adjoining room explored how families can influence and a life that was harder, whether distress was suppressed, support each other, the importance of shared experiences spoken by some, denied by others or even discussed at and building networks. Examples of family-led initiatives all. that had been developed to support people with ■ Whether both parents viewed the disability similarly or disabilities in their local communities were given. differently? My own brief for the family session was to consider the ■ Whether it brought parents closer together or drove intricacies and balances of the caring role for families, its them apart. challenges and possibilities, and the role of psychotherapy ■ Whether they were able to talk about it or unable to do in this. In this context, this article outlines the kinds so. of issues that arise and the discussions that occur when ■ If there was denial or acceptance of the disability by one families are given the opportunity to talk about their or both parents. experiences. ■ If parents resolved issues together or apart. ■ What expectations parents had of the ‘child’ and the Family issues future. Family life is complex. All families have challenges. ■ Who if anyone believed/hoped there would be a Family stress does not arise exclusively in families in developmental catch-up or a miracle cure? which there is a member with a disability, but research ■ When, if ever, did hope fade for one or both parents? does show that when a family member has a significant ■ How parents negotiate care now. disability, the family stresses are greater, particularly on parents. These stresses may then extend out and filter Disability and family relationships down into the entire dynamics of family life. In a time The issues of relationships and how they are altered or of recession these stresses are increased as services are changed also arise in family sessions and include the decreased and already diminished vocational choices following discussions: shrink further for everyone. This makes family support ■ What supports were initially provided to parents by even more important. family, neighbours, friends and relations and the community in general. Disability and grief ■ How disability in the child/adolescent/young adult has Disability inevitably brings most people into the grieving altered the parent/child relationship in both positive process, especially in the early stages when it becomes and negative ways? apparent that a child will face special challenges in life. In ■ How the balance of dependence and independence, family therapy, therefore, questions arise in relation to this protection and empowerment, safety and freedom is grieving process such as the following: managed when a young adult requires special supports. ■ What assistance was given when the initial loss and ■ How are relationships managed with brothers and grief of having a child for whom life would bring more sisters, with aunts and uncles and grandparents, with challenges was experienced? family and friends and the extended family and all the ■ Who could articulate their upset/ disappointment/ different views that people may have about what is anxiety / distress/ anger /sadness/ grief? ‘best’ for the person with a disability. ■ What dreams were lost? What fears arose? ■ Who listens best to the wishes of the person with the ■ How did life change? For whom did it change most? disability? ■ How did people respond? ■ How do parents let brothers and sisters help without ■ Who supported? Who didn’t? burdening them and without feeling guilty if they call ■ Who was distressed? Who seemed to cope? on them for support? ■ Who was depressed? ■ How do parents seek help without hampering

 frontline Spring 2014 relationships and good will in their other children? ■ How do parents avoid taking on everything themselves? ■ Does attending to the person with a disability get priority and who if anyone in the family may resent this? ■ What opportunities are given to brothers and sisters of the person with a disability to be of assistance? How does this differ depending on family size? ■ Who in the family appreciates the person with a disability most? ■ Who does not? ■ Who offers support and assistance? ■ Who cannot do that? ■ Who resents having to help out? ■ Is there one brother or sister who supports more? If so is that person called on automatically to help? Too often? Unfairly? ■ Are parents so protective of the family that they do not ■ Young adults with disability often leave home later ask for help? than the usual time or do not leave home at all. How is ■ Are they concerned that help is a burden and therefore preparedness for leaving home measured and by whom? they take on more than they themselves are able for? ■ What is the role of the community? Is there a community that is vigilant, supportive, and Professional relationships appreciative or is it anxious, suspicious, fearful, Dealing with professionals can be difficult for families who ignorant? find that they have to negotiate with so many different ■ The issue of capacity—how is that defined and services, speak to so many people, acquire knowledge and understood? expertise in relation to their rights and entitlements and ■ Other issues of decision making—what are the rights how to make the best decisions for/with their own child. of the person with disability to their own medical care, The following issues therefore also arise: own decision making vis-à-vis ensuring that choices ■ What social services are available? that are made are informed, are not impetuous and are ■ What professional help is sought and provided for the in the best interests of the person? family? ■ Is professional intervention experienced as available, ■ Is it enough? It is supportive? Is it encouraging? supportive or intrusive? ■ Does it empower or disempower? ■ What it is like to be at the behest of services and the ■ Is it experienced as respectful? whim of provision? ■ Is the unique experience and knowledge of the family ■ Access to services—who cares for the person and for the has considered? carer? ■ Is the person with disability consulted sufficiently? ■ The danger of burnout, fatigue, feelings of helplessness, ■ Has the family sought family therapy? hopelessness, feelings of exhaustion in parents after ■ If not, what are the issues that such conversations years of struggle and too much worry for too long. might help and who would this help most? Who would ■ Parents’ own entitlements to life with respite from care. wish to attend and who would not? ■ Loss of dignity in having to keep asking for what ■ What does the family need now? should be rights and entitlements. ■ What concerns do parents have for the future? ■ Negotiating complex service and government systems, ■ Who can help them best with these concerns? spending hours online, talking to hundreds of people, ■ What financial, trust, legal arrangements might need having to be educator, psychologist, legal expert and to be put in place to ensure their child’s welfare when advocate. parents die? ■ Ensuring participation of their ‘child’ as a citizen and an integral part of society and community life. Transitions from child to adult services A crisis point for many families occurs at the time of Emotional challenges for the person with disability transition from child to adult services. At this point the In the wealth of discussion about the person with issues that arise in therapy include the following: disability, the person with disability themselves can get ■ Confusion about what the adult role for the person lost. So much time is spent on intervention, on accessing with disabilities should be? services, on measuring progress, on educational goals ■ How do you balance safety and autonomy? and in planning for the future that the individuality, ■ How do you respect individuality and development the uniqueness, the personal, emotional, affective life while not exposing a vulnerable person to danger? of the individual with disability can be overlooked. For ■ How do you assess risk when parameters are different? a person with disability there is also loss, perhaps grief, What is the balance between protection, overprotection yearning and longing and the wish, that we all have, not and exposure to risk of those who may be more to be different, to be accepted, to be loved, to be good vulnerable in certain areas than others? at something and to be helped with what is difficult to frontline Spring 2014  FAMILIES

do, to have skills recognised. The issue of psychotherapy ■ How is their frustration, their disappointment, their for people with disability is one that requires greater sense of difference, their sense of being cheated attention in the light of the experiences for the person managed? with disability and the need for a place in which that ■ Are they also protecting the family from what they feel person can safely address those personal experiences in an just as the family is protecting them? age-appropriate way. ■ Is their emotional life over managed? Is it over-intruded The issues that have been identified for discussion upon? Is it dismissed or ignored or viewed as part of include (using age- and stage-appropriate terminology disability? and/or other media) the following: ■ How are decisions made and at what transitional and ■ Early life experiences – memories of that. developmental stage can the person with a disability ■ Feelings of being dependent – expectations of others gradually assume more responsibility. and of themselves. ■ At what stage (if possible) are decisions made more by ■ Family relationships, feeling different, having to be the young person and less by other family members and minded, feeling the resentment of brothers and sisters professionals? or feeling too special in the family. ■ What is the difference between imposition and ■ To what extent did the person with disability recognise consultation? and understand their difficulties and difference from ■ How can consultation be respectful, sensitive, warm, others? realistic, supportive and collaborative? ■ How did it show? ■ How can professionals assist individuals and families ■ What did it mean to them? while respecting the uniqueness of the person with a ■ Could they talk about it? disability and that person’s family? ■ Were they accepted or rejected, supported or bullied, patronised or privileged, protected, overprotected or left Summary to fend for themselves? It is, of course, a cliché to say that none of us is without ■ What self-concepts emerged? some disability. In our cache of strengths and challenges ■ What view of self was shaped by having to attend a each of us knows what we can do well and with ease, different school or additional services? speech and what we do with difficulty and what defeats us. We each language therapy? occupational therapy? finding some have the right to recognition of our abilities, support things more difficult to achieve? needing specialist for our disabilities and respect for our unique skill set help? having professional intervention? that we bring to the world. That includes all of us. It ■ How did they feel when they could not participate took expansive thinkers such as Howard Gardner in the equally with classmates in some activities? early 1980s to recognise the damage of deficit models of assessment and the extent to which psychological Psychotherapy and disability testing focused on difficulties rather than strengths. The provision of psychotherapy to people with learning He recognised the indispensable role played by family disability is an important issue in any rights-based, support, societal interest, cultural values and appropriate equal-opportunity, respectful, collaborative approach to services to find, nurture and encourage all talents in services. Of course there are questions as to how this can everyone. be provided keeping in mind issues of informed consent, The current rights-based, client-centred, collaborative capacity to engage in therapy, issues of contracts and ways of understanding what people want, rather than a confidentiality, age-appropriate content in psychotherapy top-down expert stance, is a direction to be welcomed. discussion and appropriate models of therapy—given the This requires truly respectful recognition, listening, wide range of therapy models that exist. empowering and co-construction of services that are The provision of psychotherapy is further complicated family and user friendly and facilitate the provision of by the fact that while there have been a number of what people want, instead of what they are told they Irish professionals and services that have provided ‘should’ do. This may seem to be especially difficult at psychotherapy as part of their overall service provision a time of cutbacks and scarce resources, but it is crucial, to people with disability, we do not yet have national from an ethical perspective, that there is no return to old strategies, practices, procedures, protocols or best practice models that assess, categorise, institutionalise, segregate, guidelines for psychotherapy for people with disability marginalise and exclude any citizen from as much self- across the entire ability-disability spectrum. This is a loss determination and choice as possible within that person’s for individuals and families dealing with the multiplicity capacity. We are all entitled to this. of challenges that face them. The questions that arise in relation to psychotherapy include the following: Dr Marie Murray is a Clinical ■ What access to therapy, if any does the young person Psychologist and Psychotherapist, with disability have? a Registered Family Therapist and ■ How is this done ensuring safety, confidentiality, age- Supervisor and a Registered Member appropriate conversation and models of therapy? of the European Association for ■ How can people with disability be both protected and Psychotherapy. She is a former empowered? Director of Psychology and The ■ How do they get to express the emotions that all young Student Counselling Services in people feel? University College Dublin.

10 To comment on this article, email: [email protected] frontline Spring 2014 FAMILIES FAMILIES AND HIGH-QUALITY INDIVIDUALISED SUPPORTS Paul Doherty, Leadership Development Manager, Genio, says future policy will see more people with an ID being treated within the community.

Although many families have not yet been made this to happen, however, it was felt that such families would sufficiently aware of it, there is a clear trend in Irish need appropriate training in individualised ways of working, national policy towards new ways of supporting people with exposure to specific examples of individuals who had been disabilities, mental health difficulties and dementia that will supported to make successful transitions to the community, see more of them being facilitated to live in the community, clarity concerning how necessary state-funded supports would rather than being maintained in segregated institutions. be secured and sustained, and opportunities to participate in Families that are already alert to this trend seem to be family leadership development programmes. A need was also responding to it in different ways, but for many, any positive felt for the establishment of new forms of relationship with potential they see is overlaid with a range of anxieties. service providers, service commissioners and policy makers, The fact that the new approaches are emerging against a whereby there would be greater confidence that family voices backdrop of budget cutbacks inevitably raises the question would carry appropriate weight. of whether they are in fact more about cost-containment Genio has worked within the limits of its resources to than progressive service reform. Families are therefore respond to families’ needs. We have set up a series of training understandably concerned, not only about the quality of any days for families on ‘social role valorisation’—a leading alternative provision that will be made for their relatives, approach to arranging individualised supports. We have but also about its sustainability in the longer term. Even also included family leaders in a major new eight-month with adequate support, some families also question whether training initiative in which they are training together with their relatives will be capable of living self-directed lives in participants coming from service-providing organisations. the community, and even whether such lives will in fact be To promote balanced dialogue with other key stakeholder preferable to their current experience. groups, Genio has supported the emergence of a multi- In Genio, we are supporting demonstrations of how stakeholder forum in which family leaders engage with individuals can achieve much better life outcomes when leaders from service-providing organisations and formal they are properly supported in the community. Since 2010, peer support programmes to identify and disseminate good we have been grant-aiding projects that have resulted in individualised practice. supported individuals enjoying lives that include more of the To address the expressed need for training in good things that people in the wider population generally individualised ways of working, Genio intends to support take for granted. Our commitment to promoting high-quality the development of a new training programme that will be individualised supports in the community is driven, not specifically tailored to the needs of families and delivered by the current policy trend, but by an awareness that such primarily by family leaders. However, in this, as in all our supports can quite literally ‘save people’s lives’ in the sense work with families, we recognise a need to enter the family of recovering the possibility of their experiencing autonomy, domain with appropriate humility. It has been suggested by meaning, dignity and genuine inclusion. some that the ‘family space’ has sometimes been colonised We recognise that the achievement of proper support by powerful agencies and that families must therefore in the community requires that a number of different reassert what Michael Kendrick refers to as their ‘natural stakeholders fulfil essential and complementary roles. In a authority’, or, as Margaret Ward suggests, ‘reclaim [their] majority of cases, family members are foremost amongst family business’. (Related articles by both Michael Kendrick those stakeholders and Genio has sought to back innovative and Margaret Ward appear in the CRUcial Times Newsletter, initiatives aimed at strengthening them in their vital support June 2013. See www.cru.org.au). Genio’s work with families role. Genio-supported initiatives have included projects to should clearly serve to empower, rather than to disempower, help families to access relevant information, to plan and and the development of the new training programme for arrange individualised supports, to deepen community families will therefore be a collaborative undertaking in connection and integration, to exercise leadership, to which we will seek from the outset to facilitate family undertake advocacy, and to maintain their own wellbeing involvement and leadership. as they provide support for their relatives. (An evaluation of some of Genio’s family-focused work that was completed Genio is an organisation whose mission earlier this year is available on www.genio.ie, along with a is to bring together government and complete list of the projects supported.) philanthropy to develop, test and scale At a ‘scoping session’ for families that was organised cost-effective ways of supporting people by Genio in June 2013, it was agreed that, with the right who are disadvantaged to live full lives backing, many families would freely choose to retain or in their communities. If you would like reclaim some of the responsibility they might otherwise have to know more about Genio’s work with surrendered to professional service workers in order to enable families, please contact Paul Doherty at their relatives to realise their potential for a good life. For [email protected]. frontline Spring 2014 To comment on this article, email: [email protected] 11 D ISABILIT Y ABROA D APAE: A LOOK AT HOW THEY DO IT IN BRAZIL

Ciaran Leonard gives us a quick look at how Brazil approaches the issues around the care and education of their citizens living with intellectual disability

generally, let alone a specialised, quality service of training and care for those more vulnerable in society. APAE in Goiania functions on four separate sites across the city. In the main complex we found the administration and telemarketing sections (32 employees engaged in telemarketing to raise sufficient funds to maintain the organisation’s services). Alongside these sections, a clinic was in full flow with medical doctors, physiotherapy, social services, speech and language services and a training program for young mothers of newly born children with ID. On the other side of the building, a school for 6-12 year olds operates with classes of no more than 5 or 6 children. A large play area and restaurant completed the services on this site. The second site across the city provides a school for These few lines originate in Goiania, Central Brazil, a older children, with emphasis on sport, cultural and leisure large city of approximately 2 million inhabitants. Having activities (with a swimming pool that would be the envy of recently moved from working in Delvin, Co. Westmeath, professional swimmers). In this complex there are a series of with the Muiriosa Foundation as a social care worker, I training workshops for both the young adult users and for thought a quick look at how Brazil approaches the issues their family members, many of whom fall into the category around the care and education of their citizens living with of low-paid workers. Indeed one of the criteria which APAE ID might be of some interest to Frontline readers. As our usual adopts in accepting new service users is that they be from points of reference are often the UK, Europe and sometimes families of minimum salary workers or unemployed. I found the US, how this work is approached by this particular it fascinating that a large proportion of their work is with organisation in Latin America is interesting, to say the least. family members, thereby addressing social and economic APAE (The association of parents and friends of people needs which often weigh negatively in the development of with disability) functions across Brazil in about 2,000 the person with ID. of the country’s 5,000 municipalities. It is a non-profit, The third site functions on a farm on the outskirts of the voluntary organisation which operates as a kind of franchise city. It provides a variety of training programs for the service throughout this vast land. Each entity is a separate unit users, including a kitchen/catering course and another which operating under a wider federation of APAEs. To set up a trains and assists young men particularly to enter the market similar operation one needs to adopt its principles and of industrial cleaning. The site also boasts a state-of-the-art values. It was founded in 1954, but has been in operation carpentry shop which provides quite a lot of the furniture here in Goiania since 1969 offering services to 550 citizens for the wider APAE community. An arts and crafts section with ID and their families. The salaries of teachers alone are manufactures artefacts for a small shop on the premises. funded by the municipal government. This collaboration The very real engagement of the service users was palpable between the municipality and APAE is important in that and I was aware of a group of young men engaged in dance APAE offers services normally considered as part of a public and music therapy as I was shown around the complex. I health service and sells services in its laboratory (see below) was particularly struck by the open access to all power tools, at low rates to the city government. saws etc. and was advised that health and safety training APAE is classed as an organisation which promotes human for the users of the workshop is ongoing, No accidents or rights and focuses on social inclusion, breaking down social serious injuries have been recorded in over 13 years. APAE and economic barriers and preparing their young people for makes very real attempts to insert their service users into the the world of work. Interestingly, they do quite an amount world of work. This has been successful to varying extents, of work and training with the families of the service users, depending on the motivation of the employer. After the including training for the workplace to their immediate training period at one of the workshops, the young worker is relatives in an effort to alleviate some of the economic and then accompanied by a social worker until they are properly social burden on the wider family unit. integrated into their new workplace. Salaries paid are the The Brazilian state, whether at municipal, state or federal market value for all workers in that particular category. level, does not provide any free public service to families of Perhaps what struck me most was the work that APAE people with ID. Recently the government has declared that carries out with pregnant women on its fourth site. This area it would prefer to see special education incorporated into the is designated the Institute for Diagnostics and Prevention state school system, but while theoretically a positive move, (IDP). It offers all pregnant women the possibility of testing this is largely regarded as political rhetoric and ideological for a series of illnesses and diseases which would potentially banner-waving, given that the state school system is grossly harm or damage the foetus. The expectant mother completes under-funded, mismanaged and has enormous difficulties a simple blood collection in her local public health unit and providing basic mainstream education for the population it is then sent for testing, free of charge to the user, to APAE

12 frontline Spring 2014 P ALLIATIVE CARE who test for a range of illnesses including HEP B, HEP C, HIV, rubella, syphilis, shingles and many other potentially CHILDREN’S foetus-harming illnesses. If a positive result in recorded, the pregnant woman is then offered accompaniment to determine any potential harm to her child. PALLIATIVE CARE If there was one over-riding impression I was left with after my visit, it was that this was a truly integrated service— literally from the cradle to the grave. Care and consideration IN IRELAND commences with the accompaniment of pregnant women in high-risk categories. Clinical diagnosis and support services Louise Neary & Claire Quinn say palliative care should are on the same site as the school for younger children. be provided by staff with children’s nursing and medical Workshops and ongoing training operate and APAE is qualifications currently developing a project for their third-age group. A further impression which remained with me was the Introduction extent of the involvement of APAE with the families of the In the current health services, the challenge is to provide service users. A large amount of APAE’s resources and time is appropriate palliative care services to children with a invested in training parents, siblings and even grandparents reduction of resources and staff members in the acute, in two aspects. Firstly, in the information and training needed community and disability sector. Therefore healthcare to care for the young child with ID—how to administer professionals and service providers need to deliver medication, continue physiotherapy at home, nutritional services in innovative ways and use best-practice models aspects of their care and, most importantly, the psychological to give quality care in the current economic climate. aspects associated with accepting and promoting the place of Ireland is among only a few countries in the world to the child living with a ID in society. Secondly, APAE promotes have a paediatric palliative care national policy—which and offers workshops to train the family members in a trade is admirable—however, there is ongoing work to fully (seamstress, carpentry, industrial cleaning services, etc.) to implement the recommendations to improve the quality of address often pressing socioeconomic questions which can life of children with palliative care needs and their families. prejudice the ongoing development of the family member with ID. This holistic approach sees the person with ID within Children’s palliative care the context of the family unit, whose needs and development Palliative care for children is a holistic approach to care can be prejudiced by adverse economic conditions. within a model of family-centred care (World Health Interestingly, APAE does not offer residential services. Organisation WHO 1998). The basis of high-quality Indeed, the provision of residential services across the services requires an interdisciplinary model of care utilising city is extremely limited and provided by two religious all available resources to meet the needs of the child and institutions for those with profound ID and physical needs family. It can be provided in all healthcare, disability and only. Specialised transport is not furnished, requiring the home settings with sufficient support and resources. service users and their family carers to travel to and from Paediatric palliative care is a new and developing nursing their respective units by private means or, as in the majority and medical speciality. This speciality is gaining a research of cases, by public transport. This provides its own difficulties base and recognition from all healthcare professionals with long queues from early morning (buses are usually in acute and community settings. At present, decisions packed full and extremely uncomfortable at the best of times, are made through consultation with experts in the field but the upside of this is that many of the teenage and adult and mutual agreement is obtained on future directions in service user groups learn to travel alone and engage with children’s palliative care (Straatman et al. 2008). the public in a real manner—challenging some of the social Ireland’s national policy for paediatric palliative care was barriers we have all become accustomed to. published in 2010 (Department of Health and Children APAE is currently attempting to address another emerging 2010). The aim is to provide palliative care in the child’s need in the world of ID—the care of elderly citizens with ID home, where this is the child and family’s preference. The and their specific issues. They intend developing a project need for a nationally agreed care pathway for children’s which would see the creation of small homesteads on a larger palliative care is acknowledged in order to provide some farm setting to shelter and care for those who perhaps have direction for healthcare providers. Currently children with lost their primary carers over time. complex medical needs and life limiting conditions are If there were some key words which my visit to APAE attending community, acute and intellectual disability presented, they would be around the concept of care for services and there is little expertise in devising integrated the entire family of the citizen with ID care pathways in conjunction with acute services for these and perhaps the integrated, coordinated children. approach to service provision. I am extremely grateful to Snr Marcos Borges, Children’s hospice the General Manager of APAE, Goiania, Interestingly, the development of a children’s hospice for the time he took in taking me around has not been seen as an urgent recommendation within the various sites, for the information national policy. Consequently, LauraLynn Hospice does furnished and, indeed. for his enthusiasm not receive state funding, because it has been seen as the in ensuring a quality service for vulnerable location of parental choice for palliative care. However, citizens. Ciaran Leonard clinicians are aware that successful implementation frontline Spring 2014 To comment on this article, email: [email protected] 13 P ALLIATIVE CARE of palliative care depends on local resources, skills of the national policy. But again, families find it increasingly healthcare professionals and collaboration with community difficult to access respite facilities that can accommodate palliative care services that are available and accessible children with life-limiting conditions and palliative care to families. Although home is the preferred location for needs (who often have associated complex medical and many families, this option requires an appropriate local technological needs) in acute paediatric units and disability support system to be available and responsive to the child services. The need for respite in and outside the home and family’s needs. Siden et al. (2008) conducted a study setting is highlighted in the national policy, as well as in that analysed data for over 700 children with a wide range Respite services for children with life-limiting conditions and of life-limiting conditions and recorded the child’s place their families in Ireland: A national needs assessment (The of death. Interestingly, all families had access to palliative Irish Hospice Foundation, LauraLynn Ireland’s Children’s care services in hospital, home and hospice settings. The Hospice 2013). In the current economic climate, there findings stated that parents were equally divided in their has been little evidence of improvements in respite care preferences for each location. services and the HSE plan for locally available respite services for these children. Respite services often depend Current service provision of children’s palliative care on the availability of appropriate services usually supplied The policy highlights that palliative care services need by the voluntary services. to be accessible, equitable, flexible and appropriate for the child and family, and to link with existing health Conclusion and recommendations and primary-care services. The consideration of both This policy document focuses on the need to respond to children with malignant and non-malignant disease is also this demographic change and to cater for this group of highlighted in the policy. It is well known that children children. It provides a future framework for this area of with malignant conditions are facilitated to die at home in care and a clear direction for health professionals and a higher number of cases, with greater access to local adult stakeholders. If implemented, it can positively enhance the hospice and home-care teams—and often local paediatric care of children. It will need to be continually reviewed to oncology and haematology clinical nurse specialist services provide the best evidence in this area of palliative care. The in shared care settings, as well as specialist palliative-care improvement of communication and integration of teams services. The adult home care teams in the community are working across professions and care-providers (especially more familiar with the disease trajectory in oncological between the state and voluntary sectors) is pivotal, with conditions and symptom management for these children the use of integrated care pathways. The provision of and paediatric oncology has the best developed system of respite services is paramount to the future of services in the care (Lambert 2002). O’Brien and Duffy (2010) highlight home and/or appropriate local services to ensure parents that in Ireland families do not always have a choice in the are supported. location of palliative care provision for their child because services may not be available in their community or Louise Neary (RNID, RCN, RNT, MA, MSc) home. Therefore we need to ensure this is addressed with was appointed as Ireland’s first Nurse Tutor appropriate community-based nurses with these skills and solely dedicated to the provision of education abilities. in children’s palliative care and intellectual Our national policy highlights that palliative care should disability in 2013. She has clinical experience be provided by staff with children’s nursing and medical in the care of adults and children with qualifications; however, in practice this is often not the intellectual, physical and sensory disabilities, as well as case (Hill and Coyne 2012). Irish research has shown the with neonates and children in general medical and surgical difficulties adult trained nurses encounter in providing units. Her research interests are parental participation and palliative home care for children and their families. community living for children with intellectual disabilities. The difficulties highlighted included that children with complex needs often have increased technological needs Claire Quinn (RGN, ONC, Grad Dip Pal Care, and unfamiliar specialist equipment, an uncertain illness MSc) joined LauraLynn in 2012 with remit trajectory, the need for paediatric medication management of establishing Ireland’s first department skills, working within a family-centred model of care, specifically dedicated to the provision of lack of transferability of adult skills, concern of their clinical education and research for health level of competency, liaising with other care providers to professionals working in the area of children’s formulate a plan of care, general practitioner reluctance palliative care. Claire is also the module to be involved in decision making, parental expertise in leader on Care of the Child and Family with life-limiting care-giving activities, and the complexity of symptom Illness at NUI Galway. Building on her clinical experience management in paediatrics (O’Leary et al. 2006, Quinn of caring for children with a life-limiting illness, she is and Bailey 2011). Staff within adult palliative care teams now undertaking a doctoral study with the University of and disability, maternity, neonatal units and public health Lancaster. She has contributed to the seminal national settings need to be able to access and attain palliative care policy Palliative Care for Children with Life Limiting education and training. This need is highlighted in the Conditions in Ireland (2010) and is a member of the policy, but the HSE currently funds only a small number of National Development Advisory group for children’s such initiatives. palliative care, tasked with implementing the national The need for accessible and responsive respite services policy recommendations. for children with palliative care needs is highlighted in References with the editor

14 To comment on this article, email: [email protected] frontline Spring 2014 SMART TO U RISM DUBLIN SMART TOURISM GUIDE, Dublin: Down Syndrome Ireland, 2013 Reviewed by Niall Power and Mary de Paor.

have to use coins (and the right fare) on Dublin buses. That can be hard for people if they don’t know it—and that you can get a change refund at Dublin Bus HQ. The guide gives the internet sites for most kinds of transport, but not for Aircoach, which has a lot of routes. It might be good to say what bus numbers go to the ‘top 10 things you must see, if there is a new edition of the guide. And they could mention the free Dublin Bus app for smart phones. I’m glad Croke Park was in the list of places to go. They could have said lots more about the GAA—and Dublin Football! Mary’s comments: The Irish traditional foods list was very good. Maybe they could have mentioned where to find them on the menu (like Gallagher’s Boxty House). Phone numbers might be useful for the hotels and some of the places to visit. It’s hard to put so many centuries of history into just a few pages; I missed a sentence about pre-Viking Baile Átha Cliath, and the Great Famine, rather than plagues. Down Syndrome Ireland (DSI) has published an 82-page The ‘ten top things you must see’ were well chosen and guide to Dublin, funded under the Gruntvig Lifelong Learning interesting. The National Museum of Ireland entry (p.51) refers Programme of the European Commission. The guide is designed only to the Natural History Museum, with no information about for persons with special needs—but it can also be useful for any the other two parts of the national museum collection elsewhere. city visitor. Twelve members of the DSI’s National Advisory Council The ‘live’ zoo is in the ‘having fun’ section, along with hop-on- devised the Dublin Smart Tourism Guide in the spring of 2013, in hop-off bus tours, which were also in the transport section. The the same format as similar guides to Rome (by members of the authors also suggested visitors might like to go greyhound racing, Associazione Italiana Persone Down) and Lisbon (by members and to the National Leprechaun Museum. of the Associação Portuguesa de Portadores de Trissomia 21). The two walking routes were very good, but a little confusing, The guides cover the city geography and history, with maps and with the map for Walk Two coming before the description of Walk information on transport, suggestions on where to eat and sleep, One, and vice versa. things to see and do, and self-guided walking tours. The authors of the guide suggested two good tours outside We read the Dublin guide together. Niall’s comments are: There Dublin, to Co. Wicklow and Kilkenny. And we enjoyed the ‘notes is good information at the beginning about traffic (that we drive on from the editors’ at the end of the guide, giving their personal the left), our time zone, electric plugs, and the weather. I thought it recommendations. The National Advisory Council members now a little funny that they said the Gardaí ‘are usually friendly and don’t have an additional qualification—as Dublin City Guides! Niall has carry guns.’ suggested there might be a second edition of the Dublin Smart I’m really interested in public transport and it was good to have Tourism Guide—and we think it would make an excellent free App. maps for the DART and LUAS. But the LUAS map didn’t have the Niall’s dad and I visited Lisbon in February. I had downloaded extensions to Saggart and Cherrywood. They didn’t say that you the Lisbon Smart Tourism Guide (in English!) and found it very useful. It seems a pity that the Dublin guide is only available in English—not translated for our Italian and Portuguese visitors. Any volunteers?

The Dublin Smart Tourism Guide is available, priced e7.50, from Down Syndrome Ireland, City Link Business Park, Old Naas Road, Dublin 12; tel: 1890-374374; email: [email protected]. The guide can also be downloaded for an e-book reader or smart phone, from downsyndrome. Orla Hannon (Co. Clare), Declan Murphy (Waterford), Gráinne de Paor Down Syndrome Ireland), ie/wp-content/uploads/ Shaun Bradley (Letterkenny), Councillor Clare Byrne, David O’ Brien (Dublin), Pat Clarke (Down Dublino-en-landscape-120413- Syndrome Ireland) and Thomas Garry (Tullamore) web.pdf frontline Spring 2014 To comment on this article, email: [email protected] 15 ASSISTIVE TEC H NOLOG Y ENABLING ENVIRONMENTS: A STEPPING STONE TOWARDS INDEPENDENT LIVING Patricia Regan says the use of assistive technology is proving to be an exciting and productive method for facilitating more independent-living situations.

We are living in a world where technology is integral to These technologies can lay a crucial role in facilitating our day living—from waking up to the clock-radio alarm, independent living and accessing education. using a smart phone reminder to attend an appointment, The increased sophistication of communications the use of sensor lights to make our way safely from the car hardware, coupled with technological developments to the front door at night time. in devices such as sensors, has created the potential for Assistive technology is a term that has come to be vulnerable people to be monitored remotely and supported generally used to refer to practical tools that can support as needs arise, rather than having to be supported by staff functional needs of people who experience difficulties directly and irrespective of immediate need. Telecare can linked to disability or ageing. The most widely used be described as ‘the delivery of health and social care to definition of assistive technology is probably the individuals within the home and wider community outside definition of ‘assistive products’ used by the International formal institutional settings, with the support of devices Standards Organisation (ISO): ‘Any product (including enabled by information and communication technologies’ devices, equipment, instruments and software), especially (Tang et al. 2000). produced or generally available, used by or for persons Assistive technology and telecare devices that are with disability: for participation; to protect, support, train, commonly in use include: measure or substitute for body functions/structures and ■ Gas, flood, smoke, carbon monoxide and temperature activities; or to prevent impairments, activity limitations or extreme sensors, sometimes linked to voice announcers, participation restrictions.’ staff pagers and mobile telephone contact systems, gas Many people think of complicated computer software and water shut-off valves, automatic window openers, programmes, when they think of assistive technologies. ■ Bed and chair occupancy, door opening, falls and infra- However, there are many characteristics of technology, low red sensors, to high technologies, commercial to custom technology. ■ Environmental control systems that ensure easy to use We often describe inexpensive devices that are simple and controls for TVs, DVDs, lights, etc., easy to make and maintain as ‘low’ technology, and harder ■ Fingerprint-operated door and room locks, to obtain as ‘high’ technology. Examples of low technology ■ Easy-to-use mobile telephones that include alarm could be communication boards, modified eating prompts, task scheduling, GPS tracking, utensils, or bath aids. Powered wheelchairs and electronic ■ Door closing and key reminders, medication reminders, communication devices, and eye-scanning equipment are ■ Low-tech solutions such as picture phones and plugs to examples of high technology. prevent sink/bath overflows. When we speak of assistive technology, we often think of technologies that help people with disabilities to be Figure 1: Motion Activated Memo Reminder more independent in activities of daily living, for example, the use of infrared motion sensors that can facilitate the opening of a door, turning on a lamp, making a phone call, all from pushing a button. Assistive technology is often discussed in the realm of educational technology, where products are provided to people with disabilities to access educational materials and instruction in school and in other learning environments. The use of assistive technology by people with intellectual disabilities to enable individuals to live more autonomous and independent lives is not usually highlighted when assistive technology is being discussed in the media. There is a presumption that such technologies would be ‘too difficult’ for the person with an intellectual disability to manage, and that the User friendliness is a key feature in the area of assistive concept of ‘wrap-around care’ is the ‘safest’ way to support technology, as it works best when a good match is the person with a disability. reached between the user and the technology. ‘One size However, in Ireland, and in other countries around the fits all’ does not work in the area of assistive technology; world, the use of assistive technology is proving to be a comprehensive needs assessment is crucial to identify an exciting and productive method for facilitating more a tool that is well-matched to the individual, and the independent-living situations, and in supported living. environment in which they live. Critical transition points

16 frontline Spring 2014 in a person’s life—from school to work, or moving from with supports tailored to their individual need (Report of a congregated setting to community living—are times the working group on congregated settings, HSE, 2011). where the use of assistive technology may be of benefit to Assistive technology can play a vital role in enabling this facilitate independence. new model of support, such as in-home supports. The following areas should be taken into account when In-home supports are the forms of support that enable conducting a needs assessment: the person to live independently and safely in their ■ The individual’s cognitive/learning level, own home. As well as support provided by paid staff, ■ Their physical abilities related to device usage, smart technology (technology to enable people to live ■ The individual’s awareness/motivation, and independently) should form part of the new model of in- ■ The individual’s self-determination/expectation. home support, to facilitate independence and community inclusion. There is a fear that the introduction of assistive Figure 2: Big Button Phone with 4 Picture Press Dialling technology is due to ‘financial cutbacks’ and ‘cost saving’, rather than trying to facilitate increased independence and autonomy. This is a valid fear, due to the current financial crisis that the country finds itself in, and daily discussions in the media with regard to staff being ‘let go’ and words like ‘redeployment’ being bandied about on the airwaves. Parents/relatives/friends of people with disabilities have every right to be concerned about the safety and well-being of the person that they love. However, if a person with a disability has the potential to achieve even a small amount of independence due to a piece of assistive technology, wouldn’t it be a shame not to give that person the gift of some autonomy in their activities of daily living? There is no magic wand; there is no way of knowing whether assistive technology will facilitate independence without Before an individual with a disability and their trying it out, where appropriate, and it goes without saying parent/carer/significant other begins to look at assistive that assistive technology should go hand-in-hand with the technology as a means to facilitate increased independence, appropriate level of direct support from a carer/staff/friend the abilities of the individual concerned are taken into of the individual with a disability. It is not envisaged that account. A keyworker, and the greater multidisciplinary assistive technology will ‘take over’ the role of direct, team, may be consulted, along with parents/carers and paid support; rather, it is to empower and facilitate perhaps new skills may need to be learned to use the independence. It is not an either/or situation, but there are technological device. As in any situation, if the person who situations globally where, over time, the amount of direct is to use the device isn’t interested, often this device will support has been reduced considerably through the use of be abandoned quickly, or ‘left on the shelf’. We all know assistive technology. You might wonder who will fund this situations where complex mobile phones were purchased assistive technology—a valid point. But such technology for relatives/friends with good intentions, but were too has become very cost-effective and it can supplement difficult to use by the recipient, and therefore abandoned. paid support very well, as research on the provision of Unfortunately, the purchaser of the phone may come to assistive technology in Ireland (conducted by the National the conclusion that the person ‘can’t use a mobile phone’, Disability Authority in 2012) and in other countries has instead of looking at the skills and abilities of the person shown. involved, enabling the person to buy a mobile phone that best suits his/her needs. It also takes time to learn a Figure 3: Big Button Phone with SOS Button and GPS new skill, and the appropriate amount of time should be Location dedicated to skill learning commensurate with the person’s abilities. According to the National Housing Strategy for People with a Disability 2011-2016, extensive international research, spanning over thirty years, consistently points predominantly towards a better quality of life for people with disabilities in community settings compared to institutional care. All those now living in congregated settings should have the opportunity and right to move to a home of their choice in the community (Time to move on, HSE, June 2011). However, while a person’s home offers safety, warmth and a good environment to live in, it cannot be and should not be the person’s complete world. Independence and inclusion in our own community is a We are at a vital time in our history, with the closure of measure of a fully-engaged life for people with a disability, congregated settings and the move towards community as it is for everyone. The new model of support should living for people with intellectual disabilities,. It would be a enable people with disabilities to live in dispersed housing, shame to substitute large institutional settings with smaller frontline Spring 2014 To comment on this article, email: [email protected] 17 ASSISTIVE TEC H NOLOG Y institutional settings, based in the community. Now is the time to look at the wider picture on Story Time how people with disabilities of varying abilities can be supported to live in a variety of home settings, with a variety of supports, with assistive in Little technology, where appropriate. Of course, there are cases where full-time paid support is necessary and essential for the Stars Crèche safety and well-being of the individual living in the community—that is not disputed. We are Featuring Jackie at a turning point in how the type of support, individualised to the needs of the person with a disability, can facilitate the best possible quality and Sophie of life and tap into the potential of the person involved. This is not to say that everyone wants to live alone; many people with disabilities enjoy the company of their friends (as per the rest of the population). However, how often is this model employed to facilitate budgets, staff ratios and vacancies in community houses, rather than true individualisation and the wishes of the person with a disability? Some people, particularly those on the autistic spectrum, may not like sharing with others, and if appropriate, they should be facilitated through the use of assistive technology, and with the correct and individualised level direct support, to enjoy the best quality of life for their individual situation. To conclude, they say that ‘no man is an island’—every person in the community relies on others, in varying degrees, to achieve their potential. Assistive technology should not replace support; rather it should be considered, where appropriate, to supplement the correct and individualised direct support to facilitate the person with a disability to achieve his/her potential and to experience the simple pleasures in life that many of us take for granted.

Patricia Regan is employed as a Senior Occupational Therapist by the HSE and has worked for the Longford/Westmeath Occupational Therapy Service since 1994, previously having worked in Beaumont and St Vincent’s Hospitals and the former North Eastern Health Board. She qualified as an Occupational Therapist from Trinity College Dublin in 1991 Story Time with Sophie, Deirdre, Maria and the children from “Little Stars” and completed a MSc in Rehabilitation Studies Navan Rd. Dublin 7. in University College Dublin in 2005. Patricia This is the story of how two young adults with a physical and worked as a Project Lead in Assistive Technology intellectual disability undertook a new valued role in their local on the Alvernia Transfer crèche. It involves Jackie and Sophie, the innovative staff from Programme, and as Siamsa, the use of appropriate Assistive Technology, hard work and a Person Centred a warm welcome from Sandra and the children of Little Stars, on the Planning Facilitator for Navan Rd. the HSE Intellectual Following on from an information sharing session at the Emersion Disability Service, Conference held in Killarney in the Summer 2013 staff from Siamsa Westmeath Area, in were inspired when they heard about a girl with a profound disability 2012 to 2013. She who went to a crèche and helped tell the children stories…. is currently the Irish As it happens there is a crèche across the road from St. Vincent’s Delegate for the centre “Little Stars”, and the staff in Siamsa felt that it may offer World Federation of some of the young adults an opportunity to get involved in their Occupational Therapists. community. When approached the staff in Little Stars were very

18 frontline Spring 2014 So in October 2013 Jackie and staff started going to the crèche for story time. Jackie delivered her story line moving her head to the side to activate the recording on the BIGmack and it was a great success. From the very first day all the children were really friendly and receptive. After a while Sophie showed an interest in being involved in story time too, so now they take it in turn every Monday morning. Sophie uses her head to activate a pillow switch which is attached to the BIGmack. When the pillow switch is pressed it activates the BIGmack, AS Sophie finds the pillow switch easier to activate. It was decided to do a different story every second week ensuring that the story contains a key recurring phrase that is recorded onto the BIGmack. There is a lot of work every week with deciding on the story, recording it on the BIGmack, making props and practising to get it just right. Jackie and Sophie are getting great enjoyment from story time in Little Stars, the preparation, meeting the children, going for coffee and chat Jackie Carty with staff afterwards and of course being involved in their community. welcoming and delighted with the offer of help with story Sandra, the manager said that this time each Monday morning. is a great opportunity for the children to interact in such Back in Siamsa a discussion took place about who would a fun activity with people who have a disability. This enjoy working with children, be interested in helping out Christmas one of the children asked Santa for a wheelchair with story time and have the skills to use the assistive like Jackie’s and Sophie’s - she wanted it for her teddy, and technology (BIGmack) that would make it possible. it arrived! Every Monday they ask who is coming today as Jackie Carty was the young lady who was first given they come down the stairs they can be heard asking “is it the opportunity, Jackie has a wonderful smile and really Jackie or Sophie?” when they see who it is they have a big enjoys the company of others and, as stated earlier she “Hi” the staff don’t get a look in! has a physical and an intellectual disability. Jackie uses a BIGmack* BIGmack* for communication. She has a great skill of using Record any single message for up to two minutes directly her head to activate the BIGmack which is mounted onto into the BIGmack then press its large activation surface for her wheelchair. playback. Jackie and the staff got together and picked their first story. The children who would be listening to the story Joan Nolan, CNM 2, Siamsa, Adult Day were aged 3 and 4 years. It was important that Jackie would Services, Daughters of Charity, St. Vincent’s have a key part to play in the story telling and of course Centre, Navan Road, Dublin 7. that the children would enjoy the story. It was agreed that the first story would be the popular “The Very Hungry Caterpillar”. In this story a very important line “but I’m still hungry” is repeated throughout the story, this line was recorded onto Jackie’s BIGmack. The plan was that the staff would tell their part of the story Stephanie Lynch, Clinical Nurse Specialist, and at the appropriate time Jackie with a prompt would Assistive Technology, Daughters of Charity, move her head to press her BIGmack thus delivering the St. Vincent’s Centre, Navan Road, Dublin 7. important line “but I’m still hungry”. It was crucial that this worked well for the children as well as Jackie so props were made to enhance the telling of the story. Jackie and the staff practised using her BIGmack and the props to get the story just right. frontline Spring 2014 To comment on this article, email: [email protected] 19 ASSISTIVE TEC H NOLOG Y Assistive Technology In Our Library Stephanie Lynch, Clinical Nurse Specialist, Assistive Technology, Daughters of Charity, St Vincent’s Centre describes the IT amenities for those with an intellectual disability.

Cyberskills room, there are four dedicated computers with assistive technology resources.These computers are accessible to users who have an intellectual disability. Each computer is positioned on an adjustable-height table to facilitate wheelchair users; they have a selection of special-needs software installed with a number of alternative input devices attached to facilitate access; and all have internet access. When initially making the software recommendations, the challenge was to find resources that meet the users’ ability level and had age-appropriate content for older users, while at the same time being motivating. The following features are included in the different software programs: ■ Software is easy to launch and navigate. ■ Graphics are visually simple, clear, uncluttered and free of busy and rapidly changing screens. ■ Language is clear and simple. ■ Tasks are easily understood with the ability to select or deselect specific tasks. ■ Some of the software provides the user with an age- appropriate real ‘life skills’ environment. ■ All the software supports alternative input devices. ■ The software includes options that allow configuration and design for individual needs. ■ Individual configurations are easily saved and retrieved. ■ Different levels of difficulty can be set to challenge, but not frustrate, the user. ■ Software allows changes in its content and how it is presented.

Using a standard mouse or keyboard requires a combination of motor, cognitive and physical skills that can be a challenge to many users. They require an input Blanchardstown Library, the largest Public Library device that is appropriate to their cognitive and physical in Ireland, is situated opposite Dublin’s Blanchardstown skills. Each computer has a variety of input devices Shopping Centre, beside the Draoícht Theatre and on a available and all have a touch monitor which provides busy bus route. the most direct form of access to interact with software. The Cyberskills room in the library is a large accessible Alternatives to the standard mouse are available, such as custom-built ICT training facility for local community a trackerball, which has a large sturdy ball that can be groups. Funding for this facility was made possible by a moved using the whole hand and three large coloured grant from the “eInclusion Fund” which was available buttons which, when pressed, perform the same actions as a few years ago, administered by the Department of the a standard mouse. Taoiseach. The fund was set up to facilitate the greater There are alternative keyboards available in different use of ICT and the internet by groups experiencing layouts and sizes. Some have lowercase letters which can difficulties in this area—including people with intellectual help with letter recognition; others have larger keypads difficulties, older people, women working in the home which are easier to focus on and easier for users to isolate and men working in traditional trades. individual keys. At the initial setup stage, Librarian Lillian Whelan, Switches are also available as an alternative to the who made the application for the funding, contacted standard mouse and keyboard. They provide a direct and staff from our Client Computer Service at St Vincent’s simple method of access to engaging and motivating Centre for advice on software and hardware accessible for computer activities, and they are connected to the users with an intellectual disability. Lillian included our computer using a switch interface. recommendations in the funding application and it was With the implementation of the New directions report successful. (Health Service Executive 2012), day service users are Along with the twenty training computers in the moving from St Vincent’s centre-based day services to

20 To comment on this article, email: [email protected] frontline Spring 2014 inclusive community-based services. There are now several community-based day activity groups using the accessible ICT facilities in the library Cyberskills ASSISTIVE room. As individual users have different abilities, TECHNOLOGY interests and learning styles, the purpose of the sessions vary. It may include the development of new ICT skills, practising and consolidating previous learned skills. For others it is an accessible activity that they enjoy. I continue to provide support and advice to users and staff availing of the resources in the Cyberskills room in Blanchardstown Library. It is a great accessible community resource. Sessions are booked in advance and it is possible to block-book during regular library opening hours.

Contact: [email protected], Blanchardstown Library, Civic Centre, Blanchardstown Centre, Fingal, Dublin 15. Pouring My Tea ‘Hello, my name is Kathleen Cooley and I am 73. I had a great party for my last birthday. I live in a house with six of my friends. My hobbies are knitting, making jewellery with beads, meeting my friends and I like watching television. I can do most things for myself, I like doing things without help. I love my cup of tea I like to pour my own tea. It is hard for me to see when my cup is full, I don’t like when I spill my tea. Now I have something to help me, I put it on the top of my cup, I pour in my tea and it makes a loud noise when the tea is at the top, then I stop. It doesn’t work when the batteries stop working. I like using it because I can pour my own tea and I don’t spill it.’ The above is a short description by Kathleen of her use of a Liquid Level Indicator - it enables a user who has a sight impairment to pour a drink without the risk of spillage. The device yellow in colour, it is placed on the side of a cup and when the liquid has reached the top a series of audi- ble beeps and vibrations will alert the user that the liquid has reached the top. It requires a battery and is suitable for hot and cold drinks.

Stephanie Lynch, Clinical Nurse Specialist, Assistive Technology, Daughters of Charity, St. Vincent’s Centre, Navan Road, D7. frontline Spring 2014 To comment on this article, email: [email protected] 21 ASSISTIVE TEC H NOLOG Y THE NETWELL CENTRE AND CASALA— ENHANCING LONGER LIVING IN SMARTER PLACES Julie Doyle on various types of technologies to support independent living for older adults

Countries globally have been experiencing an technology. Furthermore, cognitive disabilities resulting unprecedented increase in the number of older adults. As a from age degenerative processes can significantly increase result there has been an elevated interest in understanding the learning curve of older adults, making it more difficult the factors that may support the maintenance of and time consuming for this group to learn new skills, independent living and quality of life of older adults. compared to younger adults. Designers of applications that Extending the opportunity for older people to age in a target older adults as a user group must understand this place of their choice is a major policy alternative to long cohort’s attitudes towards technology and communication term care, thereby enabling older people to stay active, and ensure applications are designed with their unique productive and engaged in society and to enjoy a higher needs in mind. It is therefore crucial to involve older quality of life for longer. adults in the design of technologies that will support There is a large role for innovative technology to them in living independently in their homes. At CASALA support monitoring, early detection and management of and the Netwell Centre, this involves user requirements health and wellbeing in the home. Most diagnostic and gathering through interviews and focus groups, involving treatment approaches to health are centred in clinical older adults as co-designers in technologies at each stage settings, and very few have focused on improving the of the design and development process and evaluating self-management of wellbeing using novel in-home, usability, effectiveness, satisfaction and impact of such ICT (information communication technology)-based technologies with older adults. intervention systems. Utilising combinations of ambient CASALA have been involved in the design, development sensor monitoring, telehealth and ICT, it is possible to and deployment of various types of technologies to predict changes in wellbeing, and to deliver feedback and support independent living for older adults. Telehealth interventions to support personal wellness management. is the remote exchange of data between a patient at The Netwell and CASALA research centres, based at home and their clinician, to assist in diagnosis and Dundalk Institute of Technology, have as their core goal monitoring, typically used to support people with long- to ‘Enhance Longer Living in Smarter Places’. Together, term conditions, such as diabetes, chronic heart failure these cross-sectoral, multi-disciplinary research centres or COPD. Telehealth can provide the person with more are developing new ideas that support ageing-in-place control and understanding of their condition. Telecare and enhance the quality of life and well-being of older refers to support and assistance provided at a distance people through technology, community and environment- using technology. It is the continuous, automatic and based interventions. Specifically, the Netwell Centre remote monitoring of people by means of sensors, to focuses on integrated community-oriented services, more enable them to continue living in their own home while sustainable home and neighbourhood design, and age- minimizing risks such as a fall or a gas leak. For a person friendly initiatives. CASALA is focused on technology suffering from dementia, for example, a sensor on a door development, industrial engagement, commercialisation that detects when it is opened, can alert a carer or family and market stimulation for innovative systems and member if a door has opened during the night, which services for older people. A large part of the ongoing might mean that the person with dementia has left the research at Netwell and CASALA involves Great Northern home. Haven (GNH)—a demonstration housing project An important aspect of the use of technology to support consisting of 16 purpose-built homes, each equipped health and wellness self-management is that feedback with a combination of sensor and interactive technology is provided to the appropriate person, be it the person to support independent living for older adults. The themselves, a clinician or a nominated carer, in a way that apartments at GNH are occupied by older adults, all is easy to interpret and act upon. Furthermore, technology of whom have been living there since June 2010. Such should only act as an enabler to healthy ageing rather longitudinal monitoring of residents living in these smart than a replacement for current practice and services. homes provides very powerful information on how older adults live their lives and supports the monitoring of For more information visit www.casala.ie Visitors are wellness and the promotion of timely interventions to welcome to visit the centre and the demonstration prevent or slow down health decline. apartment at Great Northern Haven to view some of the Both Netwell and CASALA employ a person-centred technologies utilised. approach to the design of services and technologies for the older population. Technology can often represent a barrier for older adults, acting as an inhibitor to usage rather than a facilitator. There are many reasons for this including unfamiliarity, computer anxiety and inaccessible

22 To comment on this article, email: [email protected] frontline Spring 2014 ASSISTIVE TECHNOLOGY: NEVER MORE ACCESSIBLE OR ‘INVISIBLE’ Kevin Hoey, Sunbeam House Services, Bray on a pilot scheme that empowers those with an ID through technology.

Hop on a bus or a train and at least half the passengers are planning that, very much, puts ‘the person first’. This chance ‘find’ clicking some gadget, be it a smart phone or the latest tablet. on my part led to the start of an interesting assistive technology Not so long ago, the only person seen with such a device was pilot project at SHS which I believe will challenge much of what we probably a person with a communication challenge, the device have done in the past. being used solely, and in many cases reluctantly, to overcome some My intention is not to endorse one piece of software (detail sensory deficit. In many cases the device was bulky and probably of which is available on www.aspirico.com so you can decide cost a king’s ransom. The robot-like emanations turned heads and for yourself about its functionality). However, it was the premise were often a source of embarrassment for the user. Nowadays, behind the software that intrigued me most. Ownership of the this need is conveniently camouflaged behind the latest iPad or personal plan, within the database, lies with the person being Galaxy tab and the person with a sensory challenge fits in well with supported. The person has the final say on which part of their the masses. The cost of the device is significantly lower than its life plan is visible to whom. The system facilitates an advocate, if predecessor and the flexibility of its use is immense. required, who might be a keyworker or family member. However, One gentleman I have the pleasure of working with at Sunbeam it is essential that it is a person who will not unduly influence the House Services (SHS) has made this transition. When he wishes to person supported, who has their own login and their own view, ‘speak’, he flips his iPhone open (reminiscent of that early Star Trek customised to suit their level of intellectual ability. wrist action) and gets his point across in jig time. He then returns to From the organisation’s perspective, the key performance checking his emails or catching up with his Facebook posts. indicators (KPIs) linked to the person’s goals can be identified and The expensive four-figure-priced boxed application has been their progress tracked. If the technology is used organisation-wide, replaced with the ‘app’ costing from zero to a relatively modest it provides the service and support manager with a tool to see sum. The creation of these apps has in many cases moved from the where organisational deficits exist and where resources need to be domain of the techy developer to the family member of the person allocated to meet them. The system has the ability to link with the supported, innovatively creating new and useful pieces of software, organisation’s quality system, e.g. Personal Outcomes Measures. the purposes of which are very specific. Don’t take my word for it, From an accessibility perspective, the person supported can just google ‘Apps for Autism’, and you get a ten-page list detailing upload and build their personal plan using a range of multimedia apps that meet this need. One common symptom of autism is a formats, including soundbytes, video clips etc. A simple ‘email-like’ difficulty in speaking or an inability to speak. Many of these apps messaging system allows the person to send and record queries use augmentative and alternative communication (AAC) features to all the stakeholders tasked with supporting them. Additional that teach the person with autism how to construct sentences optional modules include personal finance and time-tabling. using symbols and pictures. They also have text-to-speech, word We piloted the software at Sunbeam House Services with a prediction, and a customisable vocabulary and interface. group of people supported, family members, frontline staff and The people requesting services and supports from our service service managers. The vendors assisted us with the start-up, and have pushed us to rise to the challenge of assistive technologies training for all stakeholders was provided. as an aid to meet their needs. As a service provider working with One interesting comment made by a family member during adults whose challenges in life are intellectual, this is an area that is the pilot was their concern about handing over control—the relatively new. Our colleagues in the sensory and physical disability system allowed the person to ‘keep secrets from the family’, if sector are somewhat ahead of us. However, I believe SHS, and our they wished. But that concern was balanced by the potential for colleagues in the sector, are catching up. the person’s siblings to be involved, even though they lived in A number of young people at our Training Centre have both Australia—because the system is web-based. intellectual and sensory challenges and the apps installed on their I would not like to understate the challenges that were iPads greatly assist in their communication needs. However, less identified, both from cultural and technical perspectives, during obvious assistive technology is now available to meet the changing the course of the pilot. However, when the pilot group reported face of services and supports in the intellectual disability world. to our senior management team, the value of the system was During my thirty years working at both frontline and management recognised and there was an agreement in principle to support level, my colleagues and I, perhaps unwittingly, have subscribed to its introduction. The vehicle for this will be the launch of ‘Self the notion that, ‘we know best’. As controversial as this statement Directed Supports’ which has just taken place at SHS. Iplanit will is, I believe we were not alone and most services, particularly in be used to assist the people supported when we ask them ‘What the ID sector, were designed on this assumption. This debate is for do you want of us?’ another time, but there is no doubt, times are changing. Policy In conclusion, there has never been a better shifts have seen self-directed supports escalating across the sector. So time to take advantage of assistive technology how can we use assistive technology to help the people we support in the intellectual disability sector. Much of answer the question ‘What do you want of us?’ the ‘self-perceived’ stigma attached to it can While prioritising my ever-growing inbox, I was about to hit the be eliminated. Miniaturisation has done away delete key on what I thought was one more piece of unsolicited with the in-your-face element of the devices, advertising. I spotted the word iplanit. What caught my eye was, and mainstreaming has brought down the I thought, a misspelling. However the name turned out to be cost to a point where it is available to all who the catchy title of a piece of software designed to assist in service need it. Kevin Hoey frontline Spring 2014 To comment on this article, email: [email protected] 23 ASSISTIVE TEC H NOLOG Y ALTERNATIVE AND AUGMENTATIVE COMMUNICATION AND ASD

Clare Hudson, Speech and Language Therapy Manager, St Paul’s Hospital and Special School gives a clinical perspective on the wide array of technologies available

Not so long ago I was getting some help from my fourteen ability to write short sentences) and his use of this language year old niece to download something onto my phone. As I to communicate with others. At the time, Simon frequently struggled with the task she said, ‘Maybe it was easier when engaged in behaviours that were harmful to him. Simon had apple and blackberry were just fruits.’ I’m sure she heard these in the past used low tech AAC systems such as the Picture words from some wiser person, but at that moment I wouldn’t Exchange Communication System (PECS), but the team have minded if they had been just fruits again! However, new working with him wondered whether a VOCA could support meanings of such common words (not to mention clouds no Simon to communicate more effectively, ultimately reducing longer being just for rain) reflect the technological world we the frequency of his self-injurious behaviour. live in. While some might be daunted by this contemporary Following observations of Simon in a number of world, for individuals with autistic spectrum disorders (ASD) environments, the data collected was analysed and a and their families, recent technological advances have already hypothesis was drawn up as to the function of his self-injurious opened doors to new experiences and opportunities and in behaviours. In addition, communication opportunities were time have the potential to open many more. set up in Simon’s natural environment to allow consideration This article provides a brief overview of Alternative and of what motivated him to communicate. A multi-faceted Augmentative Communication (AAC), describes the use of a intervention plan was put in place which included the following voice output communication aid (VOCA) with a young man elements: with ASD, and gives a clinical perspective on the decision- ■ Provision of a VOCA to match Simon’s abilities and needs, making professionals and families face with the wide array of allowing him to be more specific about the messages technology available. communicated, ■ Manipulation of Simon’s physical and social environment to AAC create more frequent opportunities and reasons for him to Communication Matters organisation (2013) suggests that AAC communicate, refers to a range of strategies, equipment, systems, methods, ■ Specific training for Simon’s communication partners in the and techniques used by people who have impairments of use of ‘augmented input’ (Elder and Goossen’s 1994, cited speech, language or communication. These approaches in Mirenda 2001; Cafeiro 2005). This approach involves may be unaided (not requiring anything external to the the communication partner simultaneously touching the body—e.g., use of eyes, facial expressions, gesture, signing) corresponding symbols to his/her words as they are spoken. or aided (requiring something external to the body—e.g., Thus a model for use of the VOCA is provided. symbols, communication boards or books, and technology- ■ Integration of the VOCA into Simon’s everyday activities, as based systems such as VOCAs). Aided systems can further be this has been shown to lead to the most successful outcomes divided into high-tech (those aids requiring a power supply, (Beukelman and Mirenda 2005). (such as VOCA) and low-tech (those aids that do not require a power supply e.g., pictures, symbols). AAC has been used Figure 1 Line graph showing the frequency of Simon’s self- to support the communication skills of individuals with autism injurious behaviour and communicative interactions before for many years and various approaches have been shown to and after the intervention (T1 and T2 respectively) be successful, including VOCAs (Brady 2000), pictorial systems 200 (e.g., Carr and Felce 2007) and sign language (e.g., Tincani 180 2004). Over the last number of years, technological advances 160 have led to an increase in popularity and interest in the use 140 120 of high tech AAC to support individuals with ASD. The visual SIB nature of the information provided by this technology, which 100 80 CI is more concrete and permanent than spoken words alone, 60 supports receptive and expressive communication for many 40 people with ASD. 20 0 Time 1 Time 2 A clinical perspective A number of years ago, when working with an adolescent ‘SIB’ denotes ‘Self-injurious behaviour’ and ‘CI’ denotes ‘Communicative called Simon, I first got involved with high tech AAC in the interactions’ form of a VOCA. Simon has a diagnosis of ASD. At the time he ‘Time 1’ is data collected before the intervention and ‘Time 2’ is data collected had no spoken output, but he had relatively good functional after the intervention literacy skills (ability to read and write short sentences), and interacted with others for a very limited range of reasons The intervention lasted one month (the length of the loan and about a limited range of topics. There was a mismatch period for the VOCA at the time) and involved staff training, between Simon’s expressive language abilities (seen in his modelled sessions by the speech and language therapist and

24 frontline Spring 2014 carry-over sessions by the staff working with Simon. The The words in bold denote those that were spoken using the outcomes included: VOCA in Simon’s case and using the VOCA for Aided Language 1. A substantial decrease in the frequency of Simon’s self- Input by the partner injurious behaviour and a concurrent increase in his Throughout the intervention Simon showed excellent ability communicative interactions (see Figure 1) and potential in terms of navigating around the VOCA and 2. An overall increase in the frequency of communication moving from screen to screen (operational competence), and functions across settings (Figure 2) in his ability to understand and combine symbols to create messages (linguistic competence). As may be anticipated for Figure 2 Bar chart showing the frequency of Simon’s some individuals with ASD. given the inherent social impairment, communicative interactions across a range of Simon had greater difficulty managing conversations (social communication functions in both school and residential competence) and managing social situations (social domain). before and after the intervention Interaction between the four skill areas named above supports ’School 1’ and ‘Residential 1’ denote data collected before the intervention the development of communicative competence in AAC use. 25 Simon’s difficulties in managing conversations and social situations were seen, for example, in a visit to the shop where he 20 used the VOCA to tell what he wanted in the absence of a shop 15 assistant close by to hear him. Based on the study findings and observations of Simon, 10 he was funded for an AAC-specific hand held device. When 5 I met Simon most recently, he had also moved with the 0 technological times. He was using a handheld media device Ask Give Answer Request Comment Gain for the general population (iPod touch) with an AAC-specific question information question attention app (Proloquo2go) as a communication aid. Like us all, Simon Function of Communication uses a number of different modalities when communicating School 1 Residential 1 School 2 Residential 2 with different people. He often finds that with communication partners who know him well he can efficiently and effectively during observations in school and residential unit respectively ‘School 2’ and get his message across by pointing, leading and vocalising. ‘Residential 2’ denote data collected at the end of the intervention during Simon’s preferred topics of interaction have remained similar observations in school and residential unit respectively to those of his pre-VOCA days. The VOCA has, however, provided him with a channel to effectively communicate 3. Qualitative and quantitative changes in Simon’s interactions with un- and less familiar communication partners, and to with his communication partner (see Table 1). The duration communicate about novel needs that arise in new situations. of the interaction at the end of the intervention is seven This case study has its limitations from a research turns (four of which are Simons) from a baseline of three perspective: the speech and language therapist was Simon’s turns. Simon maintains the topic on each turn without communication partner at Time 2 data collection, rather than having to depend on a question prompt from his partner. Simon having the same communication partner as at Time 1. Demands of one task changed from Time 1 to Time 2. Table 1: Table showing an example of an interaction The study did provide, however, a clinical experience of the between Simon and his communication partner (partner) potential gains for one individual with autism through the before and after the intervention. introduction of a VOCA, combined with specific training to communication partners. For Simon, an improvement in his Interaction Before Intervention (T1) Interaction After Intervention (T2) quality of life was evident. Partner: “Yes. At ten o’clock Partner: “Something about you’re going cycling. home...” Decisions, decisions ... In fifteen minutes Like many other professionals, over the last number of years there’s cycling” Simon: “ ” (Simon Tuesday I have had to up-skill in the area of technology for use with turns a and looks at Simon: (Bangs his head off the his communication individuals with ASD. On many occasions I have felt like I was table three times) partner) playing catch-up with the children and families I work with in terms of keeping abreast of all new technological advances. Partner: “Simon’s going home Whilst challenging, this is also a very exciting time. It seems on Tuesday” that current devices and apps on the general market have great allure for many individuals with ASD. This may be due Simon: “2.20” (Simon turns to the highly visual nature of the information presented, and looks towards the author) the dynamic screen or the inherent predictability of the effect of pressing a specific button, or something else ....This Partner: “Yeah. You’re going technology is relatively affordable, easy to carry around and home on Tuesday at socially very acceptable, and it is therefore becoming more 2.20. And who are you widely used. going to see there?” Within the Aladdin’s cave of apps and devices, the task of (Opens ‘family’ deciding what to use can seem overwhelming. At this point page) let’s get back to basics—to key principles of AAC that will Simon: “Mam” support the decision-making process to determine what is best frontline Spring 2014 To comment on this article, email: [email protected] 25 ASSISTIVE TEC H NOLOG Y suited to a specific individual, for now and for the future. These principles include: Making My Home ■ Clear identification of the purpose of the technology/device or app. Work For Me ■ Devices and apps are available to support education, leisure skills, communication, independent living, social skills and employment. Guidebook Determine whether the focus is to support the individual’s language and communication skills, The Assistive or to teach numeracy or literacy or, indeed, to Technology Team, provide an activity in which the individual can Daughters of Charity, engage independently for a period of time (e.g., a Dublin (DOC AT Team) game or a film). have put together a ■ Matching the capabilities and needs of the user/ Guidebook for better individual to the features of the device/app access for people with Specialised assessment will gather information on intellectual disabilities. the needs of the user in the following domains: The guidebook was sensory, physical, social, cognitive, linguistic and initially put together to communicative. Assessment will also consider the help individuals who were characteristics and needs of the communication moving from congregated partners as well as environmental demands. settings into homes in Identification of key features of the device such as their community. As size, durability, volume controls and maximums is it evolved, it became essential in the matching process (user to device apparent that the matching). guidebook would be useful ■ Identifying and including an appropriate to anyone in their existing instructional approach as part of the intervention home or when looking for package, as this is required to enhance a new home. Although not communication. exhaustive, the guidebook offers some useful tips on organising ■ AAC users and communication partners benefit a home to better facilitate the carrying out of activities of daily from support and training to use specific living and making a home safer to enable the individual to be more techniques and strategies to maximise the benefits independent in their home and effectiveness of AAC. The book incorporates symbols to point out key information for A best judgement can be made between the people with visual impairment, for people who can be forgetful, individual and device or app when the assessment for people with hearing impairment, and for people who use a is complete. It is then time to give it a go. It may wheelchair or have limited mobility. be that a device or app is found not to be suitable For anyone planning to move house, this guidebook provides immediately, but experience tells us that the door information that may help them, their family and carers in may not be shut forever. A match between the choosing their new home. An easy-to-use checklist has been individual and the device may be made at a later date provided to assist when looking at potential new homes. A list of (adapted from Howard et al. 2012). some useful websites has also been included. More individualised solutions may need to be addressed by the individual’s clinical Final thoughts support team. We live in exciting times and it seems that the The DOC AT Team hope to have an easy-to-read version of the technological revolution has come at a good time for guidebook in the near future. many people with autism. While the latest technology The DOC AT Team would like to thank the following individuals does not provide the cure or the answer to autism, it for the art work included the guidebook: may open doors for people with ASD to increase their independence, social access, and to enhance their Front Cover - Aisling Boylan, Developmental Education Centre quality of life. While we await further research findings Assistive Technology – Deirdre Redmond, Skills Development into the effectiveness of the use of technology with Centre people with ASD, we know from a clinical perspective Back Cover – Nathan Palmer, Josh Murray Nagle, Ryan Penrose, that when technology is applied appropriately to Mark de Haas, Lorna Curran, Caitlin Hassan and Trevor Aigbe, address a specific issue, it can be very effective. The Class 7, St Vincent’s National School, Navan Rd, Dublin 7. key to success is in professionals and families working together to find the correct match. For now, armed For more information about the Making My Home Work For Me with knowledge of the key principles of AAC, I am Guidebook, please contact the Assistive Technology Team, Daughters ready to embrace the new apples and blackberries of of Charity, St Vincent’s Centre, Navan Road, Dublin 7 this world and see where they lead… The case study outlined in this article was To read or download a copy, go to: www.docservice.ie. (On the home completed as part of an MSc LACIC at the page click, on the news tab, go to end of the page and it is under University of Sheffield. Publications.)

26 To comment on this article, email: [email protected] frontline Spring 2014 BETTER NIGHTS, BETTER DAYS Phillip Moorcraft and Tim Riegman write about an innovative acoustic monitoring system that enhances the lives of intellectually disabled residents by improving care and respecting privacy.

“It wasn’t until I started as an (AM2) operator that I realised what I had missed when making rounds. We now know much better what’s going on than before when we were making rounds.’ (Trudy Zuurhout, AM2 operator) The acoustic monitoring system promptly and effectively identifies problems and enables more efficient deployment of staff. Staff at Venray noted that specific residents could also be monitored better with little additional effort. With a 50% increase in productivity, the facility was able to reallocate 34% of its night staff to improve day care. The DZL Venray case is an example of one of many care homes that benefitted from acoustic monitoring in various ways. Some of the care homes had experience with using a traditional baby-monitor ‘system’, before making the transition to a professional acoustic monitoring system and they quickly noticed the benefits. Acoustic monitoring can provide a great opportunity Respecting residents’ privacy is of utmost importance. to improve the quality of care for people with an intellectual Therefore, appropriate usage procedures must be established disability. An acoustic monitoring system non-intrusively and adhered to. In-room indicators (visual and/or audio) can listens to sleeping residents and triggers an alarm when the be used to let residents know when they are being monitored. sound level in a room exceeds individually set thresholds. When explained correctly to them, clients and their peers Staff monitoring the system only listen into the room once an welcome the use of this system, as the residents are no longer alarm has been triggered. This enables staff to swiftly respond needlessly disturbed during the night. to residents in need of care. Continuous monitoring replaces To conclude, an acoustic monitoring system improves routine in-room checks. As a result, peacefully sleeping the overall experience for residents, families, staff and residents are kept from being disturbed and staff are enabled management. Residents are no longer disturbed needlessly to focus on attending to needs, instead of looking for them. during the night, which improves positive behaviour during Furthermore this improvement of night staff efficiency enables the day. Staff are able to monitor all residents continuously care homes to reallocate night staff for better day care. and only respond to actual issues. Their efficiency increases Acoustic monitoring is a proven technology, implemented notably, which pleases the management. In turn, management by many Dutch health and social care homes. One of them can reallocate more staff and funding into improving day is ‘De Zorggroep Limburg’ (DZL) which operates 31 nursing time facilities, which pleases both residents and their families. homes. DZL’s Venray location used an acoustic monitoring Families have piece of mind knowing their loved ones have an system to monitor their 100 residents with an intellectual innovative solution that ensures if any issues arise during the disability. They quickly noticed the benefits of acoustic night time they will be dealt with in a timely manner. monitoring over a traditional nurse call system. Before the acoustic monitoring system was implemented at CLB specialises in the development, production, installation DZL Venray, staff were still actively completing in-room checks and service of innovative integrated communication and alert every hour. These routine checks proved to be an inefficient systems to hospitals and care homes. Its solutions help support means to provide needed care in a timely fashion. Chances of staff to improve care quality, provide greater privacy for assistance being required in-between routine visits were very residents and help to reduce operational costs. Established in high; staff doing rounds often found themselves to be badly 1981, and based in The Netherlands, CLB’s reputation is built positioned at the moment of need. Residents also did not on its extensive experience within the health and social care respond well to having their sleep disturbed and their privacy sectors, as well as other industries, government and public compromised. sectors. The implementation of an acoustic monitoring system E: [email protected] improved the situation at every level. With intermittent checks I: www.clb-international.com on residents replaced by continuous, non-intrusive monitoring of each room, the staff quickly noted that delays in discovering needs had been eliminated. Staff remain centrally located, ready to respond promptly to alerts triggered when a room’s sound from noises such as continuous coughing, crying or shouting exceeds its designated level over a period of time. Residents who are quietly sleeping no longer need to be disturbed unless there is a genuine reason to do so. This has led to improved general behaviour. frontline Spring 2014 To comment on this article, email: [email protected] 27 ASSISTIVE TEC H NOLOG Y accessible services for everyone Eoin O’Herlihy explores thinking beyond disability access, especially when conducting access audits, designing buildings, and making services accessible, usable and welcoming to everyone. Eoin provides some everyday examples of good practice whilst highlighting the benefits of a rounded approach towards making services accessible for all.

The majority of people coming to use buildings or environments we need to think beyond just carrying out an access audit for are visiting to use a particular service or engage in a specific activity, disabled people and consider the wider population. such as taking out a book or using computers in a library, exercising We also need to think beyond the built environment and carry in a gym, participating in an arts event, paying for motor tax in out access audits which assess the accessibility of the available a public building, attending court, attending school or playing in services and any information provided. After all, inclusive access is a park or playground. But far too often, the needs of the user are achieved by eliminating barriers—whether physical, attitudinal, or ignored. For example, some of the barriers faced by people with procedural—which may otherwise inhibit full participation of all disabilities when accessing services include: community members. ■ Information barriers: One of the major barriers faced by people with disabilities when accessing public services is the lack of Table 1 Description of Universal and Inclusive Design. accessible information. This is a significant issue across a wide Universal This refers to the design and composition of range of public services including education, health and access an environment so that it can be accessed, to justice. An accessible guide to the court services is one way Design: understood and used to the greatest extent to assist people with disabilities. Another example is contact by phone. More and more people are contacting service providers possible by all people, regardless of their age, via the telephone. Therefore it is important to have systems in size or disability. Universal Design is written place to address the needs of people with hearing loss, speech into Irish national legislation in Part 6 of the impairments or people with intellectual disabilities. Disability Act 2005 and more recently it was used ■ Lack of accessible transport: One of the common barriers faced by as the principle on which Part M of the Building people with disabilities is access to public transport. Regulations and Technical Guidance Document M ■ Attitudinal barriers: A regular complaint made by people with 2010 has been based. disabilities is the lack of staff awareness when meeting and greeting customers with disabilities. Therefore it is important Inclusive This refers to the design of mainstream products to provide satisfactory customer services and ensure all staff are Design: and/ or services that are accessible to, and welcoming and to ensure a high level of customer services for usable by, as many people as reasonably possible people with disabilities. ... without the need for special adaptation or ■ The physical environment: It is recognised that the physical specialised design. accessibility of buildings is improving. However, far too often access within buildings is restricted due to poor circulation, poor wayfinding and signage, inadequate lighting, lack of What this really means is that when organisations are reviewing visual contrast to assist people with visual impairments and an the accessibility of their buildings, information and services, they inadequate number of hearing-enhancement systems to assist need to consider their approach to various elements, such as: people with hearing impairments. ■ Providing reasonable accommodation for disabled staff ■ Customer services barriers: Very often organisations lack a clear members commitment to accessibility. In order to assist people with ■ Providing satisfactory customer services and ensuring all staff disabilities, service providers should have a dedicated point of are welcoming contact and an access policy and action plan to highlight how ■ Providing policies that address accessibility they are working towards making their services accessible for all. ■ Ensuring that the day-to-day management and maintenance of buildings addresses accessibility Universal Design and Inclusive Design have key roles to play in ■ Promoting and marketing of services that are inclusive and ensuring that the services outlined above, within purpose-built designed to accommodate everyone buildings and environments, are accessible to all visitors. Barriers can ■ Purchasing accessible goods and services sometimes occur if people only think about accessibility in terms of ■ Providing information in accessible/alternative formats and pre- disabled people and any issues they may experience in accessing visitor information that assists visitors to plan their visit/journey. the built environment—ignoring the bigger picture, which is about making the services accessible for all people regardless of age, size Some of the everyday accessibility examples I have experienced or disability. and use to explain these points further include: ■ In a hospital: clear and concise signage incorporating good use Thinking-beyond-disability and the built environment of colour, with symbols to identify floor levels. One hospital has when carrying out access audits to make the services incorporated low level signage with Braille. accessible ■ In a leisure centre: travel cots placed in male and female I regularly receive enquiries about what should be covered in a changing facilities to assist parents with young children disability-focused access audit. In response, I advise clients that in ■ In a national park: a baby-changing facility designed as a line with the principles of Universal Design and Inclusive Design, standalone accessible facility—a

28 frontline Spring 2014 welcome facility for mobility impaired visitors The following are some additional examples of key design ■ In the same park: a sink and urinal installed at an accessible criteria, not referenced in technical guidance, that should be height for children and people of smaller stature considered when designing buildings to be accessible and usable ■ In a petrol station: signage on a petrol pump with a number for all people: to call for additional assistance if required ■ Parking for parents with small children: These spaces, to allow ■ In a car park at a beach: wheel stops placed within parking easier access for parents with young children, are generally bays to ensure cars don’t mount footpaths, allowing all users wider than normal and situated close to shop entrances. (including those with prams) to access the beach ■ Cycling facilities: More and more people are using bicycles, ■ A museum website: an easy-to-find page on the site dedicated but how are these users being accommodated? Useful facilities to accessibility—providing pre-visit information about the include secure storage and shower/changing facilities. building, local public transport links, relevant contact details ■ Baby changing facilities: Far too often public buildings are and assistive technology available for visitors to use and make designed without the provision of baby-changing facilities. their visitor experience more enjoyable Currently there is very little guidance on how many baby- ■ A health service provider has introduced text messaging to changing facilities should be provided and how they should remind people with visual, hearing or intellectual impairments be designed (BS8300:2009 does provide some guidance.).. of upcoming appointments, which would be beneficial to all. ■ Mixed seating: Seats with a shallower depth than standard ■ A library where all of the staff wear large-print name badges will benefit people of smaller stature. Seats with armrests can so that they are more accessible to people with visual benefit some people when sitting into or getting out of a seat, impairments. while seating without armrests can benefit larger people. ■ Ramp access into swimming pools makes it easier for people ■ Changing Places: Standard toilets and accessible WCs do not with mobility impairments, older people and parents with meet the needs of all disabled people. For example, some small children. people with complex impairments or learning disabilities require extra facilities. Changing Places facilities provide The above examples help to demonstrate just some of the additional features that can assist, such as a hoist considerations to bear in mind when carrying out access ■ Designing for obese users: Design accommodations can audits. Finally, any review must be more than an assessment of include planning for larger equipment; avoiding wall-mounted quantitative data, such as door widths and ramp gradients. An WCs; including heavy-duty grab bars in and around showers; access audit should also measure the accessibility and usability and providing ample space within WCs and around beds. of the service being provided within the building to ensure ■ Signage and wayfinding: A good wayfinding system benefits all people can equally engage with and access the service in everyone and makes it easier to understand a site and/or question. internal layout. It can aid independent orientation and reduce the amount of signage used, and costs. The use of meaningful Thinking beyond disability access when designing icons with text labels also benefits all users. buildings ■ Designing for different religious beliefs/cultures: Designers When accessibility building regulations were first introduced and building owners need to identify all end users’ needs, in Ireland, they mainly focused on access for people with including people of different religious beliefs. For example, disabilities. In recent years, there has been a shift away from prayer rooms and wash facilities to accommodate wadu. disability access only, and greater attention now to designing buildings for everyone. For example, in Ireland, Part M (access Conclusion and use) of the Irish Building Regulations was updated in For many years we have been designing buildings and 2010 and came into operation from 1 January 2012. The main environments with the ‘accessible toilet and ramp’ approach in requirement of Part M states that ‘Adequate provision shall be mind, and catering for people with mobility impairments. But made for people to access and use a building, its facilities and its this is changing. It is now recognised that accessibility affects environs.’ all members of society regardless of their age, size or ability. One of the key amendments to Irish Regulations is that there Designers, architects, planners, engineers and all those involved is no reference to disabled people in the requirements, and with making the buildings and environments accessible are adequate provision must be provided for all people to access and beginning to understand that they need to understand the use a building, its facilities and its vicinities. The requirements journey sequence taken by end users in order to make the have been strengthened so that architects, engineers, services and the specific activities people are engaging with in contractors, building owners and designers must now take into buildings and environments accessible. account all people regardless of specific characteristics/abilities. It is also now recognised that other elements of accessibility When explored further, the Irish Technical Guidance must be included in order to make services accessible for Document M (published in 2010 in conjunction with the new all—ensuring that accessibility is considered beyond ‘the requirements of Part M) states that those involved in the design built environment’. There are a number of key elements of buildings must: ‘foster an inclusive approach to the design and that must link to ensure a high level of accessibility. These construction of the built environment, and adequately provide elements include accessible public transport, information for all people regardless of their age, size or disability.’ It also and communication (i.e. pre-visit information), customer indicates that the principle of Universal Design underpins the services, buildings/environments and use of public spaces. If requirements of Part M. In the context of the built environment any link of the accessibility chain does not function properly, and accessibility, this means buildings and environments must be accessibility will not work. Therefore it is critical that everyone designed to meet the needs the widest range of people possible, takes responsibility for implementing accessibility to provide without the need for specialised adaptation. accessible services for all. frontline Spring 2014 To comment on this article, email: [email protected] 29 SERVICEASSISTIVE pTECROVISIONH NOLOG Y LISTENING TO THE SILENCE: HOW ASSISTIVE TECHNOLOGY CAN HELP OR HINDER THE THERAPEUTIC PROCESS Alan Corbett weighs up the pros and cons for assistive technology.

relationship. There is a risk that we as therapists may become overly preoccupied with the technology itself, at the risk of losing the core components of the relationship. The addition of anything more than two people into the consulting room increases the risk of the client experiencing feelings of being sidelined or overlooked, feelings that are painfully familiar to many of the clients with whom we work. While supervising a counsellor who was working with a client who used a computer package to help her be understood, I noticed how the majority of our supervision sessions seemed taken up by discussions about the technology rather than the person. In looking at this is more depth, it became clear that what was happening in the supervision session was a fairly good reflection of what Assistive technology is a growing industry, with a wide was happening in the counselling sessions. The counsellor had range of tools being developed to help people with disabilities forgotten that her primary job was to attend to her client, rather process and communicate spoken language. As this issue of than to her client’s computer. Frontline demonstrates, there is much to be excited about in This highlighted an important reminder of the risk of technology this wave of technological innovation. The lives of people with masking the primary needs of our clients. When someone has disabilities, and those who live and work with them, could be been traumatised, what they tend to need more than anything improved immeasurably over the coming decade as aids and else is to know that someone else can bear the weight of their devices become more affordable. As a psychotherapist who experiences. With people with severe and profound disabilities, we specialises in working with people with intellectual disabilities, I should not restrict ourselves to the spoken word. The more severe can see many ways in which technology could help bridge the the disability, the more we need to use and be open to non-verbal gap between my more severely disabled clients and the outside communication. Play therapy, sand tray work and art therapy world. Many of the clients I assess and work with are referred are just some of the ways in which people with severe verbal to me because trauma has entered their life. Sometimes the communication difficulties can be helped to tell their story. Much trauma is a historical one, involving childhood abuse, neglect or of therapy is about facilitating a process of mourning. Trauma is deprivation; in other cases it is more recent—a raw, open wound. a form of loss which, unless treated, can lead to permanent and Trauma tends to silence its victims, making them feel powerless debilitating emotional and behavioural difficulties. Mourning needs and unable to loosen its grip on them. to take place in the presence of another human being, and when Trauma also tends to exacerbate disability. The clients I work someone lacks words, the communication between one person and with may have a primary, organic disability, but this can then another may need to be translated through all sorts of exchanges. be hidden under a secondary disability that stems from the Foremost amongst these is silence. Many of the clients with whom abuse they have experienced. The aim of therapy or counselling I have worked have struggled to put their experiences into words, someone with an intellectual disability is to help them work and have needed much reassurance from me that perhaps they through and process the traumata they have experienced. People will not be able to do so, but they can still, through their silence, with disabilities tend not to refer themselves—this is usually done communicate the weight of what they have been through. In by a carer or family member. It is rare that someone is referred to doing this we are listening to the whole person and not just the me because it has been decided that they could benefit from a words they use. space in which to think about who they are, what they want to do As technology evolves to enable more people with disabilities with their life or how to manage feelings of sadness. More usually to voice their stories, it is vital that we are mindful of the risk of people are referred because they have developed a destructive becoming attuned more to the technology than the person it behaviour or a habit that is causing people around them to be is seeking to help. Technology can undoubtedly increase the worried. One of the first conversations I have to have is with possibility of stories being told and heard. It should not, however, the referrer to let them know that my primary job will not be to be at the risk of other less technological but more human manage or get rid of the troublesome behaviour. My real role is to techniques. help the client work out why the behaviour is there. Disability Therapy has had to engage with the world of Dr Alan Corbett is Chair of the Training Committee of the Institute assistive technology for some time now, particularly when of Psychotherapy and Disability. He has been Director of Respond, working with clients with profound verbal communication National Clinical Director of the CARI Foundation and Clinical difficulties, or physical disabilities. And yet, despite the inevitable Director of ICAP. He teaches on a number of psychoanalytic adjustments one has to make when technology is introduced trainings in Britain and Ireland, lectures internationally and into the consulting room, the key to therapy remains within the publishes widely on disability, psychotherapy and trauma.

30 To comment on this article, email: [email protected] frontline Spring 2014 UNDERSTANDING AND DEVELOPING THE EXPERIENCE OF ASSISTIVE TECHNOLOGY USE Dr John Dinsmore, Centre for Practice and Healthcare Innovation, Trinity College Dublin, explains that researchers and technology developers will maximise and refine better assistive technology (AT) use ‘Design is not just what it looks like and feels like. Design is biological/functional, social and psychological needs, as well as how it works.’ These words from Steve Jobs have echoed as my the environment or context in which the technology is to be used. mantra to creating new ‘assistive technologies’ from research Secondly, we need to create technologies that provide a personal since the moment I picked up my first iPod in 2002 and wanted experience; the catch, however, is that we also want to design for to understand why this technology and the iPhone and iPad that widespread adoption and use. Thirdly, the technology must be followed have been so groundbreaking, that globally they been able to assist lifestyle modifications and change behaviour. Finally, adopted into mainstream life. Technically these wonderful ‘gadgets’ to ensure societal adoption, the design and development of AT can be classified as assistive technologies, yet we don’t perceive must not be done in a silo around the personal user, but delivered them in the same light as the cold, often elusive umbrella term as part of a model that links in with key stakeholders in the user’s that we use to define a range of applications to support individuals ecosystem—including health services, family and community-based with various disabilities. Why? Because we see them as facilitators supports. to improve our lives, not as a crutch or something that will play In the world of ‘smart’ technologies (such as the iPhone) the negatively on our self-image and consequently any perceived opportunity has never been greater to collect and analyse data stigma we may feel to living with a disability. This is the essence of in ‘real time’ to better inform our knowledge of this ecosystem great assistive technology design, that we understand and develop and the experience of individuals living with disability. Collecting positively the experience of the user, through technology that does and understanding this wealth of new data will allow researchers not cause increased stigma or social exclusion for any disability. and technology developers to maximise and refine better assistive Diagnosed with multiple sclerosis in her late 20s, my technology (AT) use, as well as to predict and overcome any grandmother spent six decades battling the condition that left her barriers to adoption of the AT, which will hopefully create new paralysed from the waist down. At the age of fourteen, I popped sustainable and scalable ecosystems of AT use in ID. in to see her after school one day and explained I was interested Finally, a recent Irish example of the use of a simple website as an in studying psychology. With the scene set, I plucked up the assistive technology to understand the experience of the individual courage and said ‘Granny, you haven’t walked in years (nearly 40 with ID was created by the IDS-TILDA (Irish Longitudinal Study on at that point), how do you cope?’ She looked at me, smiled and Ageing – Intellectual Disability Supplement) team led by Professor said, ‘John you may not have seen me walk and many haven’t, Mary McCarron, at Trinity College Dublin. Stemming from a but in my head I can run.’ And it hit me, that I had wrongfully project entitled ‘Scenes of our Lives’, which asked individuals to judged her experience of living with a disability on my perception use art to express their experiences of living with ID, the IDS-TILDA of the condition, rather than her reality of the experience. This homepage (please visit: http://www.idstilda.tcd.ie) was transformed conversation shaped my career to understand perceptions behind to create an accessible website to provide information on diet and illness and disability and how we can use models of behavioural health, employment, learning, health services, exercise and social change with effective AT to improve the lives of these disabled connectedness (‘keeping in touch’) for individuals with ID. This is and/or chronically ill individuals. important, as the 2011 wave 1 of the IDS-TILDA report showed As researchers we need to ask, ‘How do we make people feel that out of 743 individuals with ID over the age of 40, 56.5% had more confident using AT?’ Core to answering this question is the not received easy-to-read information on keeping healthy; 69.1% ability to provide an empowered, personalised experience through had never received easy-to-read information on healthcare services; the use of the technology. Indeed, successful technologies will and 75% never wrote, texted or used social media. Uniquely, the always aim to provide great experiences as part of their intended project focused on peer learning as a motivational tool for people outcome to improve the lives of individuals. The aim of assistive to engage with the site, as individuals with ID acted out scenarios technology development in ID, as we progress into an era of to scripted pieces from their common experiences. This project connected and mobile health, should be to translate AT research provides a great example of a simple AT platform providing much to practice to improve and empower the lives of people with needed and relevant information to individuals, shaped and intellectual disabilities in all domains including education, health, delivered by their experiences. recreation and employment—as well as advance and maximise the Dr Dinsmore is a health psychology researcher opportunities for social inclusion, active citizenship and independent who’s worked on analysing the behavioural living. In essence we need to capture the complete living experience. change, illness perceptions, cognitive mediators, This is in line with ‘UN Article 26 – Habilitation and Rehabilitation’, quality of life and quality of care of individuals which promotes that all appropriate measures should be used to living with chronic illnesses. He has worked on enable persons with disabilities to attain and maintain maximum various collaborative psychology and technology independence, full physical health, mental health, social and projects with Intel, Imperial College London, Uni- vocational abilities including improved social inclusion. It further versity of Ulster Jordanstown and the NUI Galway, states that all measures should be used to ‘promote the availability, covering conditions such as stroke, COPD, schizo- knowledge and use of assistive devices and technologies, designed phrenia and obesity. John is now engaged in research and develop- for persons with disabilities, as they relate to habilitation and ment projects examining the impact of psychological principles such rehabilitation’ as part of a person’s experience of daily living. as behavioural change to the development of assistive technolo- To successfully achieve this vision, we face a number of key gies in disability and chronic illness self-management as part of an challenges. Firstly, design must involve understanding of a person’s enhanced user experience model. frontline Spring 2014 31 Subscribe to f r o n t l i n e ANNUAL SUBSCRIPTION RATES (2014)

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