The Frontline of Learning Disability by The Frontline of Learning Disability

NO. 70

SUMMER 2007

the

frontline OF LEARNING DISABILITY

Advocacy Stop Bullying Women’s Health

frontline NO. 70

Contents

SUMMER 2007

Editor Mary de Paor Deputy Editor Jim Jordan Editorial Board Mary de Paor Mitchel Fleming Colin Griffiths Stephen Kealy Aidan Butler Jean Spain Liza Kelly Nicholas Maxwell Michael McKeon Kathy O’Grady Áine O’Neill

Published by The Frontline of Learning Disability Ltd

Peoples’ Pages Stop Bullying!

Home again at Tigh an Oileáin by Mary de Paor

Streetwise by Audrey Carroll, Hilary Keppel and Sergeant Angelene Conefry

Moving from a long-stay institution to a communitybased residential programme for persons with intellectual disability: the views of families by Owen Doody

Gallery: St John of God National Art Exhibition

The Jericho Syndrome by A. R. Giles

Women’s health: An ecological approach by Patricia Noonan Walsh

Epilepsy — did you know? by Liz McKeon

Production Niamh Power Subscriptions Helen Dunne Typeset by Wordwell Ltd Printed by Ruon Print

FEATURE 18 Doing disability research: equal lives for equal people

ISSN 0791–1270 Published Quarterly

by Phillip Curry, Carol Hamilton, Hasheem Mannan, and Patricia O’Brien

Cover picture: Festive Faces. Social Activation Group, Menni Services, Dublin

Frontline is a ‘not for profit’ organisation, formed solely to publish the magazine Frontline. Copyright resides with the individual authors, but permission to reproduce any article must be obtained in writing from Frontline. Views expressed in Frontline are those of the authors themselves and not necessarily those of the editor or editorial board. Letters to the editor are welcomed. Name and address should be provided; they will be published unless otherwise requested. Articles may be submitted for possible publication in Frontline. Guidelines for authors are available from the editor. Items on meetings, conferences etc. for Noticeboard should be submitted well in advance of events, to meet Frontline’s publication schedule.

Frontline editorial address for letters, articles and other items for inclusion:

The Frontline of Learning Disability Ltd, PO Box 69, Bray, Co. Wicklow. Telephone: 01-276 5221; Fax: 01-276 5201; e-mail: frontline@indigo.ie Website: www.frontline-ireland.com

‘Our Voice’ advocacy service by Martina Kilgallon

Seasamh model of leadership and advocacy by Anita O’Connor, Derek Watson and Timothy O’Connell

The Irish Association of Advocates by Jim Winters

Longford Advocacy Partners in Disability by Valerie Maguire

Independent personal advocacy service by Gerald Mac Cann

STEP Enterprises—Carol’s story by Carol O’Reilly

REGULARS 03 Editorial 04

News Advocacy: Current developments in the Citizens Information Board Long stay health charges Advocacy studies National self-advocacy conference 2007 Chronic disease management in people with intellectual disability

Reviews SPEAKING UP: A plain text guide to advocacy Meeting the Needs of Children with Disabilities: Families and professional facing the challenge together STEP BY STEP GUIDE TO BASIC COOKERY Frontline Summer 2007

editorial

Standing up and being counted

THIS ISSUE OF FRONTLINE could almost be considered ‘a retrospective’—a onetime editor going back over old ground. Nearly ten years ago (Issue 33, January 1998), we published a feature on self-advocacy, and, as guest-editor of this issue, I thought it might be useful to chart what has been happening more recently in that area. It is very encouraging to see that a great deal is happening, and at an overdue but accelerating pace. Recent legislation has given Comhairle (now CIB— Citizens Information Board) responsibility for the development of an effective advocacy network nationwide, and it is engaged in building up a range of services, benefiting from the previous groundwork of many individuals and disability service organisations. My hope was to put together a few pages to show what is being done in the area; but the magazine is nearly filled with ‘advocacy stories’. I must thank Liza Kelly (Inclusion Ireland) and Máiríde Woods (Advocacy Executive, CIB) for sourcing the articles for me, and each of the “The Streetwise programme authors and groups who responded. We can read about the energies of self-advocacy groups—such as Seasamh in Kilkenny and was devised in order to help the Stop Bullying group who met at the National Institute for Intellectual Disability (Trinity College) and the Institute’s Transfer of individuals with intellectual Knowledge research programme—and about several advocacy services on behalf of those who are less able to speak up for disabilities live more themselves—the advocacy officers of Inclusion Ireland, Cheshire Ireland, community-based services in Sligo and Longford, and the confidently and safely in their newly-formed Irish Association of Advocates. Broadening the concept of advocacy further, Patricia Noonan community and, also, to foster Walsh and Liz McKeon (and IASSID Physical Health Special Interest Group conference) advocate advances in the good-health status of more comfortable relations people with disabilities. Owen Doody recounts a study which gave a voice to family-members of people who had been moved from between them and members an institution to a community-based residential programme. The programme was devised in order to help individuals of the Gardaí” Streetwise with intellectual disabilities live more confidently and safely in their community and, also, to foster more comfortable relations between them and members of the Gardaí. A.R. Giles appears to advocate that managers of disability services should have more empathy with the HSE! Advocacy in action is certainly evident in the heart-lifting story of Tigh an Oileáin. Again, this is a story that harks back—in fact, to Dr Noreen Buckley’s interview with the O’Connell family on Valentia in the very first issue of Frontline 18 years ago. Eighteen years, and the magazine is still in existence. But in order for it to continue, and to improve, the Frontline editorial board needs new ideas and new blood—and not least, a transfusion of resources! As an example, Frontline badly needs a website-maintenance person—and the current editorial personnel are not competent to take on that responsibility. It would only take a few hours, just four times a year—any volunteer?? Mary de Paor

While this issue of Frontline is in production, Irish Special Olympians are competing in the Special Olympics World Summer Games in Shanghai, 2–11 October. Our best wishes to everyone involved. We will hope to tell some of the stories of the athletes, coaches and volunteers in our next issue.

Frontline Summer 2007

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Advocacy: Current developments in the Citizens Information Board The Citizens Information Board (formerly Comhairle) has established new advocacy services which aim to ensure that every person—whatever their degree of disability—will have their road to services smoothed, with an advisor to assist them to participate as fully as possible in all areas of Irish society—whether they just need information so they can advocate for themselves, or whether they need a trained person to undertake the job for them. In addition to its mainstream information, advice and advocacy channels, the CIB will be responsible for three strands of disability advocacy as set out in the Goodbody report which was commissioned in preparation for the Citizens Information Act 2007. There are three strands in the disability advocacy service. The first strand is the Personal Advocacy Service (PAS), providing a direct advocacy service to the public. It is envisaged that this service will deal mainly with serious complaints and appeals. It will be developed on a phased basis, initially accommodated in the Citizens Information Board premises in Dublin. The second disability advocacy strand is the Community and Voluntary Programme for people with disabilities, currently being expanded from the existing thirty projects nationwide. The third strand envisaged is a Community Visitors Programme for people in residential care. The CIB will undertake a feasibility study on this programme, in the light of other developments in the area. The Comhairle advocacy guidelines (guiding principles and operating procedures for the delivery of advocacy services through community and voluntary organisations) (2005), prepared by Goodbody Economic consultants, are available on the CIB website: www.citizensinformation.ie. (from the CIB magazine, Speaking up for advocacy, Issue 7, August 2007).

Long stay health charges 2007 had been designated the European Year for Equal Opportunities for All. The Equality Authority has been given the task of leading the Irish activities for the year. Inclusion Ireland secured a small grant under the Burning Issues fund for the year to raise awareness with people with an intellectual disability and their families on the Long Stay Health Charges. [They] will be distributing information leaflets that will answer the many questions that people have as well as providing training to Groups. Inclusion Ireland will also be shortly commencing work with the HSE and the Federation of Voluntary Bodies on a joint proposal to bring to the Minister for Health and Children on addressing the many difficulties created by the new charges regulations. Inclusion Ireland has received correspondence from the HSE notifying of a low take-up of those expected to make a claim under the repayment scheme for earlier charges which were found to 4

have been illegal. Inclusion Ireland believes there are many people with an intellectual disability who paid some or all of their Disability Allowance to a service provider under the illegal charge, but have not made a claim for repayment. If you are, or if you know someone who may be entitled to a repayment contact Inclusion Irelandfor information on how to make a claim. Please note that the deadline for making a claim is 31 December 2007. (From the Inclusion Ireland Newsletter, August 2007 (Issue No.35). Inclusion Ireland can be contacted at Unit C2, The Steelworks, Foley Street, Dublin 1, tel: 01-8559891, email: info@inclusionireland.ie.)

Advocacy studies The Higher Certificate in Arts in Advocacy Studies (lifelong learning programme) is run at the Institute of Technology, Sligo, in partnership with the Citizens Information Board and the Equality Authority. The programme is offered by distance learning in twelve modules over a two-year period. Face-to-face elements of the course are delivered normally on the first Saturday of each month. The course has been delivered at three centres: Limerick, Sligo and Dublin. It is intended to develop additional modules to the course which, on completion, will lead to a BA in Advocacy Studies. Applications and further information and available from Andrew Long, Advocacy Course Administrator, School of Business and Humanities, Department of Humanities, Institute of Technology, Sligo. Tel: 071-9137234; email: advocacy@itsligo.ie

National self-advocacy conference 2007 Inclusion Ireland held a hugely successful conference for selfadvocates in the Ormonde Hotel in Kilkenny on 20–21 June 2007. The annual event for self-advocates is increasing in popularity every year. This year the theme was ‘relationships and Seamus Doyle (at the microphone), with friendships—getting the Denis Twomey and Padraig Reilly (KARE). balance right’. The conference included presentations from self-advocates, an open forum and workshops. The presentations covered the topics of making friends, supported parenting and dating.

(l.-r.) Rita Quirke, Elizabeth Breen, Lavinia Donoher, Ann Marie McDermott and Bridget Proudfoot (SCJMS). Frontline Summer 2007

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The workshops were around the topics of speaking up, living safer sexual lives, decision-making, enabling connections and human rights. Participants in the workshops had the chance to learn and discuss the topics. There were open forums throughout the two days where participants could raise issues from the floor. Many of the participants danced the night away at the gala dinner dance on the evening of the first day of the conference. There was a large attendance at the conference, with 265 participants. A conference DVD and a book of quotations will be available shortly. For more information contact Liza Kelly at Inclusion Ireland (email: liza@inclusionireland.ie). Sarah Lennon, Inclusion Ireland.

Chronic disease management in people with intellectual disability 21—23 May 2007, at Monash University Conference Centre, Prato, Italy. The aim of this three-day conference, held 21–23 May 2007, at Monash University Conference Centre, Prato, Italy, was to develop a framework from which to base the development of strategies for the management of chronic disease in people with intellectual disability. This conference was a Roundtable of the Physical Health Special Interest Group (Health SIRG) of the International Association for the Scientific Study of Intellectual Disability (IASSID). The conference focussed on the essential elements of such a framework by identifying: ◆ what is known about chronic disease and its management ◆ priorities and determinants of best practice ◆ methods for developing and promoting best practice ◆ how best to engage governments and the general public. Conference mornings were devoted to keynote speakers, followed by parallel sessions with a choice of seminars. In the afternoons, facilitated group discussions explored and debated preset questions. While the primary aim of developing a framework was not fully realised, participants reported useful findings from the groups. Information was shared on specific conditions with long-term consequences such as epilepsy, mental health issues, and spasticity. This will help to inform discussions on improving health outcomes for people with intellectual disability internationally. Day One focussed on the current evidence-base for practice. Speakers included Associate Professor Bob Davis from Monash University, Australia, who had convened the conference. He highlighted the importance of managing chronic disease and the impact this management has on health care systems. How health care is delivered is important for people with intellectual disabilities and is even more important if they are coping with a chronic condition. Frontline Summer 2007

Health services need to have basic information around the conditions that are more common or specific to people with intellectual disability, for example, Down syndrome. Other relevant long-term health issues are epilepsy, vision and hearing impairments, obesity, under-nutrition, dental and mental health problems. Acknowledging that people with intellectual disabilities are particularly vulnerable to a range of chronic medical and mental-health problems, Professor Davis identified the need for awareness of these vulnerabilities, in order to assist people to receive better care, better management of their condition and more anticipation of problems that might occur. He called for improved communication between all those involved in the care of people with intellectual disabilities and he emphasised the additional need for support from specialist groups. Day One also included presentations on monitoring the health of people with intellectual disabilities within the European health surveys and educating health professionals. The theme of Day Two was ‘Developing best practice in chronic disease management’. The keynote presentation, ‘Responding to the epidemic of chronic disease in Europe’, given by Ellen Nolte of the European Centre on Health of Societies in Transition, generated much discussion amongst participants. The following parallel sessions included disease management strategies, health monitoring, impact of dual diagnosis and the health experiences of individuals with intellectual disability. Day Three focused on developing models of health care for chronic medical illness management, with a keynote address from Dr David O’Hara who looked at health disparities and inequalities and the issues for people with intellectual disabilities. He identified primary-care challenges, including health promotion, education and screening, and he highlighted the need to promote selfdetermination amongst people with intellectual disabilities as a means of reducing health disparities. He gave examples of how technology can support people to become more involved in their own health care. Parallel sessions on Day Three included a systematic review on organising healthcare services for persons with an intellectual disability, empowering individuals to improve their health and well being, and health assessments in adults. The conference provided a discussion forum for people seeking to promote evidence-based practice in chronic disease management for those with intellectual disabilities. It was informative and heartening to see the level of interest in furthering both research and best-practice in this area. Personally, it has heightened my awareness of the range of health-related issues for people with intellectual disability and the need for a coordinated response to meet these needs. The conference also highlighted the importance of promoting self-determination for all individuals in society and the supports needed to facilitate this. Deirdre Corby, Dublin City University. deirdre.corby@dcu.ie 5

People’s pages

STOP BULLYING! We are a group of self-advocates and colleagues from around Ireland. We all have one thing in common. We want to stop bullying.

Some members of the Stop Bulling Group, from left: Bill Roberts, Nina Cohen, Kelley Johnson, Elizabeth Mannix, Stephen Curtis, Emer Keenan

We have been meeting regularly for six months. During that time we shared our stories of bullying. Helen Donnelly, one of our members, wrote a poem about her experience.

A BULLYING POEM — HELEN DONNELLY IF I GET BULLIED I STAND UP AND DEFEND MYSELF, PUT MY HAND TO THE PERSON IN FRONT AND SAY “BACK OFF” A COUPLE OF TIMES. SO THE PERSON WOULD GET THE MESSAGE LOUD AND CLEAR. “LEAVE ME ALONE.” IF A PERSON ASKS ME TO DO SOMETHING I CAN’T DO, I TURN AROUND AND FACE 6

THE BULLY AND SAY “NO SPELLS NO”,WHICH MEANS NO I WON’T DO WHAT YOU ASK ME TO DO. IF A PERSON TELLS ME HOW TO ORGANISE MY LIFE FOR ME, I LOOK AT THE BULLY AND SAY NOT IN SUCH A RUDE WAY. I WILL SORT OUT THE WAY I WANT IT TO BE. WHAT YOU’RE DOING RIGHT HERE AND NOW. Frontline Summer 2007

People’s pages

Waiting at the Bus Stop: Role Play — Shane Byrne I was slightly nervous before I started the role play. But I was ok when I got into the middle of the scene. I was standing waiting for the bus. I was just standing there minding my own business. Suddenly 3 women and a man confronted me: bullies. They called me names ‘specky 4 eyes, Blondie’. They said I couldn’t tie my shoelaces. They tried to take my bag, watch and phone. I went into a corner. I told them to go away. I tried to hold onto my bag. In the end the 45 bus came along. They got on the bus. I was left standing there alone.

We looked for information about bullying but we found few resources that we could use. Self-advocates from Santry Hall told us about their campaign on bullying. We decided to take action against bullying by having a workshop, which was very successful.

Planning the Workshop

What we did at the workshop

We planned the workshop over several weeks. We decided that it was for self-advocates only. We advertised it by email and by giving out flyers at the Inclusion Ireland Conference. 33 people came to the workshop. But there were over 100 people on a waiting list. Bullying is a big problem. We made a role play. We organised speakers to come to the workshop: a parent, a support worker, a self-advocate and a member of the Gardaí (who did not come on the day!) We organised coffee and lunches. We had music about bullying through the day.

We started by getting to know each other and what we wanted from the workshop. We talked about the rules for the day. We watched a role play where a person was bullied at a bus stop. People from Santry Hall talked about bullying and how they tried to stop it. They showed us a DVD they had made. We talked about different kinds of bullying, like being hit or punched, being called names or having your things taken. After a break we shared stories about bullying. Some people found this hard. On the next page are some of the stories people told.

Frontline Summer 2007

People’s pages

Some stories of bullying I was bullied on the bus. The driver yelled at me and called me names because I had a companion pass. I had my lunches taken. I was bullied when I went horseriding. I was yelled at on the street. I was yelled at when I went swimming. When I was fourteen years old at school I was called names: ‘Specky four-eyes’, and the staff did nothing. After lunch we heard from a panel of speakers about what we could do about bullying. We heard that it was important to have someone on the staff to whom you could talk in private about bullying. We heard that sometimes parents feel bullied by services, and sometimes by their children. We heard that it was important to speak up for ourselves. Then we talked in groups about what we thought should happen to stop bullying. At the end of the workshop, Helen Donnelly read her poem and two people from Santry Hall sang their antibullying song.

People called me names on the bus. They shouted ‘Get off the bus’. I was at school. I was hit, the staff did nothing. I was bullied in my house. They threw cups at me. I told the people in charge and I moved to a new house. I was bullied in school. One person called me names and spread rumours. My friends turned against me because of one person. I told the teacher and it stopped.

What we thought should happen about bullying

Anti-bullying should be in the constitution.

bully has the power, but we have The the power to stop it. Speak up. help from staff (whoever is in Get charge). Report it. Tell bullies to stop it. Stand up for your rights. Complain about it. Tell someone if you are being bullied. Set up a support group or committee. Employ a qualified support worker to deal with bullying.

Group work at the stop-bullying workshop 8

Frontline Summer 2007

People’s pages

What should we do next? We met and talked about the workshop. People had filled in evaluation forms and they told us that the workshop was very useful. We talked about how we felt about the workshop: what we did well and what could have been better. Some of the comments from the Anti-bullying Group are below.

What the Anti Bullying Working Group said about the workshop:

If you would like to know more about us, would like to join the group or have ideas about how we can raise some money to support our work, please contact Stephen Curtis tel: (01) 8962174 or email him on curtisr@tcd.ie

Help if you are bullied Here are some people or organisations that might be able to help if you are being bullied.

It was a good thing that support staff didn’t say anything.

Inclusion Ireland, tel: (01) 8859891

It was great that people got a chance to say their bit.

Comhairle/Citizens Information Board, tel: (01) 6059000

A pity about the Garda who didn’t come.

Citizens Information Centre, 1890-777121

It was my first time at a workshop and I thought it was brilliant

Reading about bullying

We are planning to do more workshops in the future. We would like to talk to school groups about bullying. We want to talk with the Gardaí about what they can do about bullying. We want to have complaint cards in the buses. We are writing to Dublin Bus to talk with them about how bullying might be stopped on the buses. We want more people to join the Anti-bullying Group. We need money to help us to take this further. Frontline Summer 2007

Earl, M. 1999. Stop it: Bullying and harassment of people with learning disabilities. Glasgow: Enable Scotland. Heddell, F. 2000. Open your mind, not your mouth. Glasgow: Enable Scotland. Heddell, F. 1999. Living in fear. London: Mencap. Inclusion Ireland. 2005. My voice, my choice. Dublin. Nina Cohen, Ross O’Neill, Helen Donnelly, Shane Byrne, Kelley Johnson, Elizabeth Mannix, Emer Keenan, Bill Roberts, David Hall, Jennifer McDonnell, Paul Alford and Stephen Curtis, Dublin 9

Services

Home again at Tigh an Oileáin

n rural Ireland, disability services are, by necessity, often located at a considerable distance from their service users’ home communities. In County Kerry, for example, services have developed primarily in Killarney (St Mary of the Angels, Beaufort, and Kerry Parents and Friends) and in Tralee (St John of God Brothers). To avoid unbearably long road commutes, five- or seven-day residences have been developed alongside central day services. It works well, but—where possible, wouldn’t it be preferable to bring people back to their own community, to mature among ‘their own people’? A fanciful, unrealistic idea? Tigh an Oileáin on Valentia Island is an impressive example of how it can be made to happen. The first issue of Frontline, in the spring of 1989, featured an interview with Mick and Rosaleen O’Connell—arguably the bestknown couple on Valentia Island—and their (then) 12-year-old son Diarmuid. At the time, Diarmuid was a residential service-user at Beaufort, and later he joined the adult services of the Kerry Parents and Friends (KPFA) at Old Monastery, Killarney. Mick and Rosaleen were always closely involved in supporting KPFA, and for many years Rosaleen was a family-liaison worker, driving all over the county to visit families whose sons or daughters availed, or might later avail, of the services.

Top: (l. to r.) Tony, Kevin, Diarmuid, Patrick (standing), Alan and Joe, sitting in the sunroom with their friend Geraldine. Above: Tigh an Oileáin 10

About 1998, the idea was hatched to establish a house on Valentia Island for a number of KPFA service users who came from the island or surrounding area. Miracles don’t happen overnight—without effort or, indeed, the facilitation of angels— but Kerry seems to have an abundance of both. Along with the organisational leadership of Tony Darmody and the KPFA, and the indefatigable work on-the-ground of the local committee chaired by Donal O’Donoghue, Mick and Rosaleen started fundraising and preparing the ground on Valentia Island (quite literally, because they were able to donate the site near Knightstown). Tigh an Oileáin opened its doors in mid-2003. Rosaleen had told me about the project, on its way to completion, but because I failed miracle-class myself, it took me more than four years to get to Valentia to visit ‘the lads’ in residence! It was on the wild and wet last day of June that my son Niall and I headed down the Iveragh Peninsula along the water-sheeted roads to Cahirciveen, and over the short ferry crossing to Knightstown. We came to a halt just up the road from the village—when Niall said: ‘That must be it, Mum, it’s all on one level and there’s a minibus in front.’ He was right, as ever, but I had expected to see a bungalow, and this was more Caisleán than Tigh! So, let me tell you about Tigh an Oileáin, where a ‘quality of life’ par excellence is enjoyed by Tony, Joe, Kevin, Diarmuid, Patrick and Alan. They have individual bedrooms, wide corridors, a music room, a games room, a sitting room and a large sun room/dining room (extension built during 2006) looking across Valentia Harbour to Beginish Island. On the other side of the house is a large workroom, filled with computers, art materials, nature-study posters and individual workstations—and evidence of projects done by the lads and their two friends (Geraldine and John James) who are day-users. The two-acre grounds of Tigh an Oileáin contain a well and a power generator—sometimes necessary for their exposed Frontline Summer 2007

Services

Top: Diarmuid and Alan with Ulysses and Róisín Left: Lunchtime for Zig and Zag Below: Patrick checking the water gauge Below right: Five Kerrymen in Rome

Atlantic-island site. A ‘standard’ polytunnel stands next to a posher climate-controlled glasshouse and potting shed. There are two donkeys (Ulysses and Róisín) and Zig and Zag in the rabbit hutch. Successors of their original fan-tail white doves (who were eliminated by a hawk) now live in a lovely designed-for-safety dovecote. The basic philosophy of Tigh an Oileáin is to create a local lifestyle for the residents, and this is evident in nearly everything they do. Their health is monitored by the local GP and district nurse and, like their neighbours, they have access to the nonacute hospital on the island and Cahirciveen hospital across the bay. They can walk to the shops in Knightstown. They grow flowers for the village’s Tidy Towns image, plant up baskets and boxes and provide their maintenance throughout the summer. They grow some of their own vegetables and supply plants for the KPFA garden centre in Listowel. Each morning at precisely 10.00, according to their daily rota, one of the lads retrieves the water gauge out in the garden. The water level is measured, added to their computer record, and reported to the met officers at Valentia Observatory. There’s a full schedule of jobs to be done inside and out, cleaning their own rooms (and the animal and bird cages) and helping to prepare meals. The Green Flag they’ve earned for their consistent efforts in recycling hangs on the wall outside the workroom.

Centre manager Fran Flynn (unfortunately on holiday when we visited) leads six members of staff. Maureen, whose area is lifeskills, literacy and science, showed me some of the aids she uses with individual residents. Picture boards, PECS and Widgets have eased the frustration of one lad who has very limited speech. The step-by-step approaches of TEACCH help another lad to organise his chores and make complex choices. Mike heads up the gardening and farming tasks and Julia leads their art and crafts projects—but everybody pitches in to prepare their float for the Cahirciveen St Patrick’s Day parade. One year the float was focussed on sea creatures, and this year it featured a huge butterfly, in line with their current nature study of native butterflies and moths. The lads also enjoy weekly drumming/percussion sessions with Karolien. Mary, Christine and Eileen are the other ‘mentors’ (Rosaleen’s apt term for the staff members). When we were there, the lads looked like multiple Medallion Men—they had just returned from the Munster Special Olympics games in Cork. Locally they enjoy visiting the gym and going riding, and they have hosted joint arts and crafts sessions with local school children. Not quite so local—they visited Rome for five days in October 2006! Diarmuid and Kevin have each been to a match at their favourite English football ground (fierce rivalry between Arsenal and Liverpool, there) My son and I, more patriotic Eircom League fans, grumbled at their foreign allegiances, but maybe County Kerry has to concentrate on some other kind of football. (The lads have been up to Croke Park once or twice, and their ‘local team’ won the Munster Final the day after our visit.) The lads at Tigh an Oileáin are well used to showing people around their demesne—they greeted the Bishop of Kerry, Bishop

Bill Murphy during their first Christmas in the house, and President Mary McAleese paid them a visit in 2005. They hosted an outside broadcast of Radio Kerry, and they were even featured on RTÉ’s Nationwide. So, why did it take us so long to get there?? Well, much better late than never, and Niall and I greatly appreciated the warm welcome the islanders gave us on behalf of Frontline. (With thanks to the annual Tigh an Oileáin newsletter Lighthouse Echo, where I checked some of the above information.) Mary de Paor

Innovation

he Streetwise project was initiated by Carmona Services in response to a need for training and education in the role of law enforcement in modern Ireland, for people with very basic literacy. The development of the training programme was influenced by a number of topical issues, such as people with intellectual disabilities or those with little or no functional literacy now using their communities in a more meaningful way through living fuller and more independent lives. Greater access to employment and education has increased the number of situations where they may witness, or commit, crimes. It is also vital that vulnerable people feel safe and know how to effectively communicate with the emergency services should the need arise. Irish people have become more affluent in recent times and with this affluence there has also been increased alcohol and substance abuse at all levels in society. These changes have highlighted the need to offer opportunities for learning about the hazards, responsibilities and legal requirements for people who might not have the capacity to learn about the laws pertaining to these issues in more traditional formats. The Streetwise training course provides learners with education about these matters through methodology that can be easily assimilated by the learner regardless of their lack of reading skills. The delivery of the training by a member of the Gardaí ensures greater communication flow between the learner and the law enforcer and assists in breaking down cultural barriers that may exist between them and some marginalised groups In February 2007 a poll conducted by Ipsos MORI on behalf of the Disability Rights Commission (DRC) in Britain

At the launch of the Streetwise programme, Stillorgan Park Hotel. 12

revealed that a third of adults (32%) with a disability or long-term health condition did not feel safe in their locality. A quarter (24%) mentioned that they had difficulty using police services in their local area. Correspondingly, just over a third of women with a disability or long-term health condition (35%) did not feel safe from harm in their local area. (This figure rose to almost half of the adults (44%) with a mental problem.) Although this research reflects the situation in Britain, it may be assumed that figures in Ireland would bear similar parallels. A survey commissioned here in 1999 by the Department of Justice, Equality and Law Reform found that 28.8% of prisoners scored below an IQ level of 70. This indicates a significant level of borderline intellectual disability among the prison population. Other relevant research undertaken by Laurence Taggart of the University of Ulster in 2004, examining substance misuse, found that people with intellectual disabilities now have increased opportunities to engage in using alcohol and other substances with both their disabled and non-disabled peers. This again is due to greater integration, finances and education. Consequently, as a feature of engaging in similar lifestyles as their non-disabled counterparts, this population may be equally exposed to similar stressors of living in a modernised culture, thereby leading them to use such substances as a coping mechanism / stress reliever and as a method of ‘fitting in’, ‘socialising’ and making new friends with non-disabled peer groups. It is the intention of the Streetwise programme to offer a greater understanding to learners (with little or no literacy) about crime awareness and to enhance the personal safety of vulnerable individuals. Stronger relationships between the Gardaí and marginalised individuals will develop, leading to crime prevention through awareness and education. It is also hoped that this training will encourage individuals to access further education and literacy training through these links with community education in their local area. The key to the innovative aspect of the training programme lies in the fact that it is delivered by a member of the Gardaí (with additional support from service-provider staff) in a community location. This type of training to a focused group has not been provided in the past and it has proved extremely valuable as a means of breaking down barriers between the Gardaí and members of the local community. It has enabled members of the Gardaí to learn to communicate more effectively with participants and to develop positive relationships with them. The Gardaí can also call upon the support and expertise of the service providers as needed. Frontline Summer 2007

Innovation

It is the intention of the Streetwise programme to offer a greater understanding to learners (with little or no literacy) about crime awareness and to enhance the personal safety of vulnerable individuals.

Fr Fintan Brennan-Whitmore (then Provincial, Hospitaller Order of St John of God) and Michael McDowell (then Minister for Justice) at the launch of the programme.

The course has provided a vehicle for non-readers to voice their issues and concerns to the Gardaí and has encouraged them to exercise their rights vis-à-vis law enforcement. It shows the very real and practical application of community education. The project has encouraged participants to address security and law enforcement issues in their community through various means: ◆ The use of community learning spaces (such as Local Employment Services (LES), Vocational Education Committee (VEC) rooms and Further Education Colleges) has made them more familiar to the learners and opened up the possibilities for them to continue their learning in these community venues. ◆ The inclusion of the interactive DVD within the training programme utilises technology as a method of reaching those learners who find using technology less intimidating than printed matter. ◆ Participation on this course has met the strong need— expressed by some of the participants—to have more control in their lives and feel safer in their home and community. ◆ The Gardaí have gained a greater understanding of the needs and concerns of people with intellectual disabilities. The former Tánaiste and Minister for Justice, Equality and Law Reform, Michael McDowell, launched the Streetwise training pack in June 2006 and Garda Chief Superintendent (Community Relations) Pat Cregg fully endorsed the training pack and agreed to issue a directive to all garda stations around the country to support the training course. Although the programme was designed and developed by an intellectual disability service provider, this is not evident in the course descriptor. It is hoped that other groups with literacy issues—adult literacy groups, early school leavers, Frontline Summer 2007

Traveller groups, the prison service, etc—will also make use of this resource. Interest in the Streetwise programme was further enhanced when the project was shortlisted for an Adults Continuing Education (ACE) Award in the ‘Expanding Community Participation’ category, which was coordinated by the National Adult Literacy Agency (NALA) in December 2006. Carmona Services, in conjunction with Sergeant Angelene Conefry, were invited to present an outline of the Streetwise Programme to delegates at the AGM of Inclusion Ireland in April 2007. In awarding accreditation to Carmona Services in April 2007, The Council for Quality and Leadership (CQL) endorsed the Streetwise programme as one of the strengths of the organisation. By mid-2007 approx 33 intellectual disability services are delivering the training in different community venues around the country and additional enquiries have been received from several other services. Comments from the participating organisations include: ‘Of great benefit! Useful in conjunction with the Charter of Rights—Right to be safe!’, ‘Useful to use for FETAC Level 2, Personal Safety’, ‘An excellent programme’, ‘Very beneficial—our service users had very little awareness of what constitutes a crime, drugs etc.’ Some service providers have encountered difficulty in accessing their community Gardaí for the delivery of the training. We are confident that the Chief Superintendent of Community Relations will be able to expedite this issue; meanwhile in the majority of cases there has been no delay, and we hope that more Garda stations will support the initiative as it is disseminated nationwide. The cost of the training pack (including course descriptor, DVD and post and packaging) is €50. The pack is available from: Audrey Carroll, Choices Department, St John of God Carmona Services, Glenageary, Co. Dublin (audrey.carroll@sjog.ie). Audrey Carroll, Project Coordinator Hilary Keppel, Project Developer Sergeant Angelene Conefry, Garda Liaison

Sgt Angelene Conefry, Superintendent Martin Fitzgerald, Jane McEvoy, Sgt Dave Roche (Community Garda), Fr Fintan and Hilary Keppel. 13

Research

Moving from a long-stay institution to a communitybased residential programme for persons with intellectual disability: The views of families Introduction It is important to review the developments of intellectual disability nursing in order to understand the changes that have led to current practice within the profession today. Traditionally, the care of people with intellectual disability revolved around long-stay hospital care, but the negative effects of institutional living eventually led to social and political pressures to move towards community care. As politicians, professionals and the general public debated the ways in which people with intellectual disability should be cared for, their opinions influenced both service provision and delivery. Historically people with intellectual disability were negatively viewed, with the use of terminology that is now considered derogatory in the English language. The labelling of people with intellectual disability has adapted in line with changing care philosophies, service provision, public perceptions and, more importantly, the views of people with intellectual disability themselves. On the establishment of the Irish state in 1922, there was only one centre dealing specifically with intellectual disability, which meant that such persons were catered for, to a large extent, in mental hospitals and in county homes (which succeeded the institutions provided under the Poor Law 1834). Today, however, there is a wide range of services for persons with intellectual disability and a substantial move from institutional to community-based care has taken place. The aim of this shift has been to see people in the mainstream of life: ‘living in ordinary houses, in ordinary streets, with the same range of choices as any citizen and mixing as equals with others’ (King’s Fund Centre 1980 p.5). The change in service provision has also meant a change in the role of the intellectual disability nurse—from providing little more than custodial care, to enabling people with intellectual disability to live as independently as possible—in an environment that maintains the privacy and dignity of each individual and provides support to enable them to reach their maximum potential in all areas of their life (Department of Health and Children. 1997b). This change in care philosophy and practice was not only influenced by government reports, but also by the field of psychology. The publication of Wolfensberger’s theories on normalisation (1982, 1972) and social role valorisation (2000, 1994, 1985), which also supported community living, had a vast impact on contemporary attitudes and practices. In addition, these theories describe care philosophies that should underpin care delivery and promote valuing people with intellectual disability and thereby facilitating their

value as individuals within society and the community in which they live.

Background of the study Family perceptions of persons with an intellectual disability who leave institutional care to live in community programmes are often included as a component of a study, rather than being considered in themselves. The present study focused, in the Irish context, on the views of families of persons with an intellectual disability who left a long-stay psychiatric institution to live in a nearby intellectual disability community-based programme. The clients involved had initially been inappropriately placed, and they were transferred as a result of the recognition of that fact, and because of current government policy. The 36 clients involved in the move were all of severe to profound disability, ranging in age from 34–74 and had resided in the long-stay institution for a period of 16–46 years.

Methodology The research was conducted with ten participants who met the criteria for the study. In order to allow for a balanced view of the move and to reflect the true perceptions of families, all the participants who were selected had two years of contact prior to the client’s transfer of residence and continued contact after the move had occurred. Six interviews were conducted with individual family members and two were conducted with two members of a family. The participants comprised six sisters, one brother, one niece, one brother-in-law and one mother. The ten participants were interviewed in a venue of their choice, for a period lasting one-hour at a minimum. A phenomenological approach based on Husserl was chosen and data was collected through interviews, which were transcribed and analysed using Colaizzi’s (1978) procedural steps.

Participants expressed a sense of gratitude for the service their family member now receives, but there was little awareness that this was within their right to equal participation in society...

Findings Overall, the participants viewed the change in service and service environment as being a positive transition. Initially participants had been made aware of the move, but some did comment on the lack of information at times. For families, the client mix and compatibility with co-residents (Browning and Jones 2002) were a general concern in the planning of the move. Families identified environmental changes (such as client independence, individual rooms, increased privacy and personal belongings) as being evident (Leff 1993). They also felt the clients were in an environment that was relaxed and welcoming, with pleasant surroundings (Donnelly et al. 1994). Frontline Summer 2007

Research

Participants expressed a sense of gratitude for the service their family member now receives, but there was little awareness that this was within their right to equal participation in society, as declared internationally (United Nations Human Rights 1987) or asserted in Ireland (Department of Health and Children 2001; Department of Health 1994). Accessibility and openness had increased for families and communication between family and staff increased. Families were given access to details of care plans and personal accounts (as reinforced by the Freedom of Information Act 1997). The expression of ownership, inasmuch as clients have their own room and personal belonging, was deemed important, but families still felt they were a vulnerable group in relation to the security of service provision and were concerned that services might not always be available to them. Good communication and family togetherness were identified as being important; this was encapsulated by a feeling that staff members were now seen as part of the family. The participants also acknowledged that the staff seemed to see the client as part of their family as well. All families especially appreciated social gatherings and events that provided more opportunities to meet, as this allowed them to bring their own children and to further develop family ties to the next generation. Participants noted that staff members often attend these events even if they are not on duty at the time, and that they might bring along their own children. These factors helped to develop a greater sense of a family environment. The clients have developed better communication networks with their own family, for example by linking more frequently with greeting cards, photos of holidays, etc The study participants also highlighted the issue of stigma. They felt that the actual institutional environment, and its physical and ecological aspects, had exacerbated stigma, which had now been considerably lessened. They were also conscious of social stigma associated with the institution, which had been viewed by some people in the area as a ‘mad house’. As Pert et al. (1999) highlighted, situational factors may lead to heightened awareness of stigma. Participants perceived that there has been ‘a new breed’ of nurses trained in recent times, and in their attitudes to care. There was an acknowledgement of the respect and dignity clients receive and the overall approach to care. Consistency of staff, and their familiarity with their family member, was highlighted as important to families. This was seen not only in the care of the client, but also in the creation of the relaxed atmosphere for everyone. Overall the care received by the clients was seen as equitable and suited to the needs of the client. Families were now treated as important people too, included in care delivery and planning, as well as being involved in such areas as developing mission statements for the houses. The team approach to care delivery and the good communication system behind this was seen to be the key. Teamwork was also very evident in relation to the annual plans which the participants identified, where all people from the family, staff and multidisciplinary team were involved.

Conclusion Overall the findings of the study are positive and sit well with the principles of normalisation and social role valorisation. Frontline Summer 2007

Among the findings, communication and the inclusion of families in the planning and delivery of care were seen as essential. Also, the general philosophy of care based on respect for the individuality of each client (as evidenced in individual care plans and mission statements) was important to families. Owen Doody, Lecturer, University of Limerick, Department of Nursing and Midwifery. owen.doody@ul.ie

References: Browning, M. and Jones, R. 2002 Using staff ratings to measure clients compatibility, Journal of Learning Disability 6 (1), 35-46. Colaizzi, P. F. 1978 Psychological research as the phenomenologist views it, In Valle, R. and King, M. (Eds), Existential phenomenologyical alternatives for psychology, New York: Oxford University Press, 48-71. Department of Health 1997 Freedom of Information Act, Dublin: Stationery Office. Department of Health 1997b Report of the Working Group on the Role of the Mental Handicap Nurse, Unpublished. Department of Health 1994 Shaping a healthier future: A strategy for effective healthcare in the 1900’s, Dublin: Stationery Office. Department of Health and Children 2001a Quality and Fairness: A Health System for You, Health Strategy, Dublin: Stationery Office. Donnelly, M., McGilloway, S., Mays, N., Perry, S., Knapp, M., Kavanagh, S., Beecham, J., Fenyo, A. and Astin, J. 1994 Opening doors: An evaluation of community care for people discharged from psychiatric and mental handicap hospitals, London: HMSO. King’s Fund Centre 1980 An ordinary life: Comprehensive locally-based residential services for mentally retarded adults, London: King’s Fund Centre. Leff, J. 1993 The TAPS project: Evaluating community placement of long-stay psychiatric patients, British Journal of Psychiatry 162 (19), 36-39. Pert, C., Jahoda, A. and Squire, L. 1999 Attributes of intent and role taking: Cognitive factors as mediators of aggression with people who have mental retardation, American Journal on Mental retardation 104, 399-419. United Nations 1987 Human rights: Questions and answers, New York: UN, p.54. Wolfensberger, W. 2000 A brief overview of social role valorisation, Mental Retardation, 38, 105-123. Wolfenserger, W. 1994 An analysis of the client role from a social role valorisation perspective, The International Social Role Valorization Journal 1 (1), 3-8. Wolfensberger, W. 1985 Social role valorization: A new insight, and a new term for normalisation, Australian Association for the Mentally Retarded Journal 9 (1), 4-11. Wolfensberger, W. 1982 Social role valorization: A proposed new term for the principles of normalization, Mental Retardation 21, 234-239. Wolfensberger, W. 1972 The principles of normalisation in human services, Toronto: National Institute on Mental Retardation. 15

Gallery

St John of God National Art Exhibition

Embracing Life with flowers brings joy, beauty, healing, colour, appreciation and celebration. Karen Hurst’s Class, St Augustine’s School

Chapel Window. Jackie Hughes, North East Services

Embracing Hospitality. Anthony Lavelle, STEP Enterprises

The St John of God Brothers Services organised their second National Art Exhibition, which was held this year in conjunction with the ‘Chapter’ of the Order during St John of God Week in early June 2007. The exhibition artwork was displayed in the Stillorgan Park Hotel, 5-7 June. Later the same month, Dún Laoghaire Town Hall hosted a prestigious exhibition and sale of the artwork of the Artisans of Carmona Services (Glenageary, Co. Dublin). To give a glimpse of the range of talents of service users across Ireland, this Gallery reproduces a small selection of the works from the National Art Exhibition.

Artisans, Carmona Services

Shelter of the Storm. Claire Keegan, STEP Enterprises

Sunny Days. Joanne O’Mahoney, Kerry Services (St Mary of the Angels)

Two Lakes. Charlie Campbell, Kildare Services

Embracing of cultures through friendship. Alan Keoghan, St Augustine’s School

Still Life. Fiona O’Rourke, Kildare Services

Lazy Day. David McEvoy, Menni Services

Smile. David Murnane, Michael Hughes, Mickey Cullen and Emily Peoples, North East Services

Swirls. Patricia Cahill, Kerry Services (St Mary of the Angels)

FEATURE: Advocacy

Doing disability research: equal lives for equal people

hile many milestones towards supporting an ordinary life for intellectually disabled people have been met and passed, full endorsement of the right to participate as equal members of society for members of this group still requires an alteration in ways of thinking about how they are to be included in the everyday life of their local communities. The National Institute for Intellectual Disability, Trinity College, has been awarded funding from the European Commission’s Marie Curie Transfer of Knowledge Programme for the development and implementation of a four-part research project. This project includes ◆ A national survey of people with intellectual disability ◆ A national survey of family members ◆ The creation of a national archive to house the life-stories of people with intellectual disability and family members ◆ The evaluation of a set of resource tools for use by intellectually disabled people to learn about research. All strands of the project reflect the overall aim of the NIID, which is to facilitate the full inclusion of people with intellectual disability through education, research and advocacy. The Transfer of Knowledge Programme (TOK) will provide information in relation to two broad questions: what is life currently like for adults with intellectually disability and family members in Ireland, and what would members of these two groups like to see happening in their lives in the future? A number of people working in the research and service sectors in Ireland have already explored aspects of these questions. In relation to people with intellectual disability, it has been suggested that members of this group appreciate the support they receive to engage in social and community activities and that they find these activities personally satisfying (Griffiths 2002). However, many continue to have unfulfilled desires for more economic, social and physical independence (Gormley 2003). Some research has also been undertaken in relation to family members. These findings have provided information about families’ views of the quality of residential support (Walsh et al. 2001), carers’ access to services (McConkey 2003), use of respite care by Irish families (MacDonald, Fitzsimons and Walsh 2006), and levels of time, energy and resources expended by families to secure mainstream educational placements for their children (Shevlin, Walsh and McNeela 2005). The NIID project aims to build on these findings. In addition, an innovative feature of this project is that a series of experienced researchers from other affiliated EU states will join the NIID team in transferring their knowledge, skill and competences to all aspects of the programme. Three of the TOK projects are currently being developed under the guidance of an advisory group of people with intellectual disability, family members, support service agencies, public agencies involved in policy, advocacy, and research and researchers working in the intellectual disability field. The guidance of this group will be central to the successful outcome of the research process, as these projects present a number of challenges. The requirements of people with intellectual disability do not always fit into survey instruments for gathering and processing information, thus how to include people with severe disabilities within a representative national survey sample presents an ongoing challenge (Phelan 2005). Yet the independent voice of all people with intellectual disability is needed to inform future development of policy documents and support structures. Families have previously provided survey responses based solely on services and support issues. This survey will include these aspects; however, it is anticipated that the 18

information gathered will also include the broader family/community interface in which services, supports, needs and wants are placed. As part of the NIID’s commitment to inclusive processes, the first stage of two of the projects will involve a qualitative dimension, bringing together targeted regional focus groups for people with intellectual disability and family members, respectively, to talk about their everyday experiences and future aspirations. This stage also follows international trends in emancipatory research which acknowledges that any research undertaken with groups who experience areas of social need should be fully consultative and inclusive of the voices of those concerned. Emergent themes from these discussions will contribute to the second stage, consisting of surveying a nationally representative sample of the two groups involved. Further details of the process will be made available as the consultative process is fully implemented. The life-story project sits alongside these two surveys, where initially in-depth interviews with older people with intellectual disability will be undertaken. This process will expand later on to include people of all ages and, ultimately, the life-stories of family members. It is envisaged that the findings of Doing Disability Research will provide detailed insight into the present and future requirements of members of these two groups. It is hoped that this insight will enable policy makers and service providers to continue to develop creative strategies to bridge the gap between current service provision, so to make the future aspirations of people with intellectual disability and their family members a reality. Phillip Curry, Carol Hamilton, Hasheem Mannan, and Patricia O’Brien, National Institute for Intellectual Disability, Trinity College, Dublin.

Further Information National Survey of People with Intellectual Disability hamiltca@tcd.ie National Survey of Family Members mannanh@tcd.ie National Archive of Life-Stories obrienp3@tcd.ie Learning about Research Resource Tools johnsok@tcd.ie References Gormley, M. 2003. Focus on ordinary people: The National Service Users Conference. Frontline of Learning Disability 54, 20-21. Griffiths, C. 2002. Quality of life: Is it different for those people with intellectual disabilities and those without disabilities? Frontline of Learning Disability 50, 28-29. Kenny, M., Shevlin, M., Walsh, P. and McNeela, E. 2005. Accessing Mainstream: Examining the struggle for parents of children who have learning difficulties. Journal of Research in Special Education Needs 5 (1), 11-19. McConkey, R. 2003. Information needs of parents about learning disabilities. Journal of Learning Disabilities 7 (3), 211-219. MacDonald, E., Fitzsimons, E. & Walsh, P. 2006. Use of respite care and copies strategies among Irish families of children with intellectual disabilities. British Journal of Learning Disabilities 35, 62-68. Phelan, D 2005. Gaining access to and obtaining informed consent from participants with a learning disability: The challenges faced by a researcher. Frontline of Learning Disability 62, 26-27. Walsh, P., Linehan, C., Hillery, J., Durkan, J., Gregory, N., Kessissoglou, S., Hallam, A., Knapp, M., Jaerbrink, K. and Netten, A. 2001. Family views of the quality of residential supports. Journal of Applied Research in Intellectual Disabilities 14, 292-309.

Frontline Summer 2007

FEATURE: Advocacy

New citizen advocacy service in Cheshire Ireland Mission—Supporting people to speak up, stand together and make change happen themselves

itizen advocacy is when one person makes a long-term commitment to the rights of another who finds him/herself devalued, disadvantaged, or socially excluded. Citizen advocates come from all walks of life, are of all ages and bring with them a unique range of life experiences, skills and expertise—they do not replace paid professionals. They are ordinary people who have made a voluntary commitment to make a difference in one person’s life. Citizen advocates play a vital role in facilitating access for the individual to a whole range of information, representation, and natural supports. This person-centred approach helps to empower people in their choices as to how they lead their lives. Citizen advocates can: ◆ Support people to express their views and concerns ◆ Support someone who has no friends or family ◆ Encourage people to take control of their lives ◆ Believe in someone when no one else will ◆ Notice things that no one else notices ◆ Take action when no one else will ◆ Support people to access information and services ◆ Defend someone’s rights ◆ Make time to be with someone who needs support ◆ Be a mentor, monitor, friend, ally or any number of other roles depending on the needs of the individual Cheshire Ireland provides a range of supported accommodation services to people with physical disabilities and is committed to providing quality, person-centred services. With the continued support of the Citizens Information Board, the Citizen Advocacy Service is now recruiting, training and matching citizen advocates with people living in Cheshire Ireland residential services in the

Dublin area. The Citizen Advocacy Service provides well-oriented, trained volunteer advocates to support people living in these services to speak up, express their desires, choices, needs and to exercise their rights. In order to assist us to achieve our vision we wish to recruit innovative and proactive people who will relish the opportunity to develop a one-to-one relationship with a person with a disability living in Dublin. We wish to create opportunities for people with a disability to have valued social roles in their communities and to have the chance to form real friendships. Therefore we are looking for people who care about and value other people in the community, who believe that it is wrong that people who have a disability are treated badly, valued less or ignored. It is easy to become a citizen advocate, even if your life is busy; it is a flexible way of making a hugely fulfilling contribution to improving someone’s life. The time commitment involved will vary from person to person depending on the needs of the individual. All you need is loyalty and the right attitude. If you would like more information about this new and pioneering advocacy initiative, or if you are interested in becoming a citizen advocate, please contact: Charlotte Knight Citizen Advocacy Coordinator Tel: (01) 2974138, Mobile: 087-2700253 Email: charlotte.knight@cheshire.ie Advocacy is at its core an empowering process which puts the individual at the heart of the decision-making process

A seat at the table ‘A Seat at the table’ project (funded by the Department of Justice, Equality and Law Reform) has established the first service-user forum in both the North East and South East of the country, for people who facing the challenges of intellectual disability. ‘Midway’ in Meath has teamed up with ‘SOS Kilkenny’ to bring together the various regional organisations that provide services for people with an intellectual disability. The project, born out of the HSE desire to have better customer service, is founded on the principles of ‘advocacy’ and ‘active citizenship’. It has brought together advocates from Midway, Order of Malta, Steadfast House, Cáirde Activation Centre, Drumlin House, St John of God Services and Rehabcare. All thirteen advocates involved in the project have been elected to the parliament by their peers. Elections, based on proportional representation, took place last July in each of the Frontline Summer 2007

seven services. The parliament members have completed a ‘Certificate in Leadership’ course at Dundalk Institute of Technology, the first students to do so. Their graduation in September was attended by President Mary McAleese. Before the General Election, the parliament hosted their second regional forum meeting, on the topic of ‘voter education’ and ‘active citizenship’. The idea was to raise awareness, both among those with an intellectual disability and those campaigning for election, of the power that this section of society have with their vote. This included a presentation from the ‘Vincentian Partnership for Justice’ and a number of TDs and councillors who took part in a question-and-answer session. On 16 May 2007, the parliament made a presentation at the national ‘Just Ask’ conference in Kilkenny, where they addressed the difference between work and employment. 19

FEATURE: Advocacy

‘Our Voice’ advocacy service, Sligo

ver the past few years, Sligo has been very innovative and progressive in the area of advocacy. Sligo Institute of Technology now offers a formal accreditation in advocacy, through a Higher Certificate in Humanities in Advocacy Studies. It is a two-year distancelearning programme offering subjects that are practical and applicable to advocacy. I completed the course in June 2006, and I found the combination of subject matter and sharing the experiences of other students very valuable. Following completion of the course, I accepted the position of Advocacy Development Officer for the ‘Our Voice’ advocacy service. I am also pleased to say that since the new government took office in June our local TD, Dr Jim Devins, now is Minister of State for disability and mental health issues. We intend that “Our Voice” Advocacy Service will work closely with him in the future.

Background to the service In 2005 the Learning Disability Services in Sligo were approached by a group of people with a learning difficulty who expressed a wish to become more empowered in making their own decisions, as they were moving from residential living to living independently. It was acknowledged that they required additional skills to help them be effective self-advocates. The Sligo Institute of Technology was contacted and invited to assist in the development of a self-advocacy training course. An appropriate FETAC-accredited modular evening course was developed, and it was successfully completed by fourteen participants over a period of twelve weeks. This was the first time, outside Dublin, that a FETACapproved self-advocacy course for people with a learning 20

difficulty had been offered through a third-level institute. The group who participated in the course now have a great sense of personal achievement and a true sense of pride that they were in mainstream college. As a direct result of this endeavour, an enthusiastic Sligo Interagency Disability Group was established in March 2005. The group consists of both statutory and voluntary agencies: HSE West Learning Disability Service, North West Parents and Friends Association, Cregg House Services, National Learning Network Sligo, and Rehab Care Sligo. chaired by John Truelove, Project Officer, HSE Learning Disability Service. A working relationship developed between the Sligo Interagency Disability Group, Sligo Citizens Information Service and the Citizens Information Board (then Comhairle) as mainstream providers of best practice in the area of advocacy. The outcome of the initiative is that Sligo Interagency Disability group was successful in securing funding from Comhairle for an initial two-year period to establish an Independent Advocacy Service in Sligo for clients of the above services and their families. This is the first time in the North West that an advocacy service for people with a learning difficulty has been established fully independently from service providers and managed through the Citizens Information Service. While it is an across-disability advocacy service, a large proportion of the clients do have a learning difficulty. I took up the position of Advocacy Development Officer in June 2006. During an induction period of three months, I met with the clients and staff of each of the five services. During this time I worked to develop the policies and procedures required in order to become operational, and which would establish ‘Our Voice’ as an example of best practice in advocacy. The “Our Voice” advocacy service was formally launched in November 2006 in Sligo with 300 people in attendance. An information leaflet was made available to publicise the service and ‘Our Voice’ achieved the accolade of winning the prestigious 2006 HSE Derek Dockery Award for Innovation. The ‘Our Voice’ service is mainstreamed through the Citizen Information Service in Sligo. I work from the Citizens Information Office in Lower John Street. The landmark location of the office has made it very accessible for my clients. Our Voice is structurally independent from service-provider agencies, which reduces any possible conflict of interest issues and gives my clients the choice to access ‘Our Voice’ advocacy independently of their service. I am also ideally placed to report inadequate and inappropriate supports and services through social policy channels in the Citizens Information office. The Citizens Information office remains open until 7.00pm on Tuesday evenings and this affords my clients access to the service outside of training-centre hours. However, it cannot be a drop-in clinic for two reasons. Many of my clients lack adequate access to public transport. Appointments are arranged to allow each client the time they need to be comfortable enough to talk Frontline Summer 2007

FEATURE: Advocacy

Our Voice is structurally independent from service-provider agencies, which reduces any possible conflict of interest issues and gives my clients the choice to access ‘Our Voice’ advocacy independently of their service.

about their concerns. It is important that they don’t feel rushed or under pressure when meeting with me. I also visit each of the services once a week. These visits are used both to support self-advocacy committees and to meet individuals on a one-to-one basis. The clinic appointments are arranged through the self-advocacy committees when a client is able to self-refer. An appointment may also be made by a member of staff/family member on a client’s behalf if they are unable to self-refer to the service. The regular time spent at each service has been invaluable in establishing the presence and availability of ‘Our Voice’ advocacy at local level. It has helped to demystify ‘advocacy’. Now that I have been in the position for twelve months, I no longer need to explain the term, and the service offered, to as many people. I have also established an identified liaison person in each of the services. This has proved useful for any of my clients who may need to access the service outside of clinic hours, but who may have speech and language difficulties. I also try to remain as flexible as possible and often call to a client’s home to meet with them.

How we realise our vision of social inclusion I believe that people need knowledge and true choices if they are to be empowered; lack of knowledge causes fear, isolation and exclusion from participation in the life of our communities. It is the right of people with disabilities to have the same life chances, opportunities and expectations as everyone else and to have the opportunity to engage in valued activities. Myers (1995) stated that ‘Empowerment is a process which helps people gain, regain, or maintain personal power over their lives with a sense that they can influence the people and organisations which affect them.’ The role of ‘Our Voice’ advocacy is to ensure that the people who come to us are listened to when they tell us what they want. I work in partnership with my clients—if they are able, I support them to self-advocate. If they have severe learning difficulties, I act as their representative. As their advocate I take action to secure their rights and interests and try to obtain the services they need. My role is not to be impartial, but to let the wishes of my client direct my work. I realise that advocacy must be undertaken in a responsible manner and not offered as a ‘wish list’ to boost the popularity of the advocacy service. There are serious ethical issues around raising a person’s expectations and not being able to deliver the outcomes they dream of. Therefore, when working on my client’s advocacy plan I strive to be honest about the real options Frontline Summer 2007

available and to act in their best interests. This is not to discourage anyone from thinking ‘outside the box’, as many solutions are to be found there! I encourage my clients to determine the level and type of involvement they want from me as their advocate. Advocacy is not about the advocate imposing their opinions on the client, but rather ensuring they have the information and time they need to reach a decision. I find that negotiated resolutions work out best for all concerned, but it is invaluable as an advocate to be in an independent position when negotiating with service providers on behalf of clients. When dealing with social service providers, it certainly doesn’t hurt to mention that I am based in the local Citizen Information office, as the role of this service is well respected nationally.

Plans for the future of ‘Our Voice’ advocacy service I currently work with five self-advocacy committees within the Sligo Interagency Disability Group. The committees offer service-users a forum to air their views about decisions taken within services that impact on their lives. There are also many issues and anomalies across social services that concern them, and the committees are becoming more aware of their own role in influencing a change in society’s attitudes towards people with disabilities. It is important that ongoing training and education are available and accessible to our clients, at a level they can participate in. I recently proposed that we form an acrossagency self-advocacy committee and the group members met the idea with a lot of interest. Following on from this the self-advocates suggested that they would like to have an opportunity to return to education and develop expertise in specific areas that interest them. Their suggestions included, as you might expect, housing, health, relationships and employment. Some other interesting topics were tabled, such as public speaking, human rights, and consumer rights. We are presently researching the type of programme we need, and are considering the role volunteer mentors could play in ensuring the success of the programme. I am pleased that the project funding has been extended by the Citizens Information Board (CIB) until 2010. There is a lot to do, and now we have time to do it! Martina Kilgallon, RNMH, Advocacy Development Officer, “Our Voice” Sligo Reference: Myers, J. 1995 The psychological basis for empowerment, pp. 111-21, in D. Thursz, C. Nusberg and J. Prather (eds) Empowering older people: An international approach. London: Cassell. 21

FEATURE: Advocacy

Seasamh model of leadership and advocacy

n 2002 the South Eastern Health Board had the idea to get the people living in counties Carlow, Kilkenny, Tipperary (South), Waterford and Wexford and who used intellectual disability services to meet. At first this ‘idea’ was just to listen to what persons thought about services. Encouraged by the health board and managers of other centres, SOS Kilkenny set to work to bring a ‘forum’ together. At the start, ‘staff’ got the conversation going; and people shared their feelings about training, day and residential services. Everybody liked being asked about what they thought, and being listened to, and they wanted to get together more often to discuss things, like: ◆ getting doctors and nurses to explain things in easy words ◆ moving into a place of your own ◆ choosing your own friends ◆ doing as much as you can yourself ◆ being asked if you liked a personal assistant or house-parent, ◆ being spoken to with respect like any other grownups. At another meeting in 2003, the forum agreed to take on work

Anita O’Connor and Derek Watson preparing for the plenary sessions at the Nothing about Us without Us Conference

with help from someone that was ‘on their side’. People made two important suggestions: to have a conference to attract attention, and for a course to be designed to help them to become able leaders. The Equals Conference took place in December 2003, in Kilkenny, with guests from almost all the services in the area, TDs, councillors, business people, South Eastern Health Board, FÁS, NDA, NAMHI and Disability Legal Resource. SOS Kilkenny was encouraged to help train and set up a forum leadership. They got help from the health board, Comhairle and the Dormant Accounts Fund to create a facilitator’s post to work with the forum. The work included holding elections, seeing what people felt they needed to learn to be good leaders, and running a course to meet that need. Cabrini de Barra, in the Brothers of Charity Services, and Joe Wolfe and Associates helped the steering committee with good advice. Elections were held in the centres around the southeast. Anyone who wanted to stand in the election could do so. Centres with up to 50 elected one representative; centres with up to 100 22

Anita O’Connor and Derek Watson, with Dr Patricia O’Brien (NIID), at the first All-Ireland Advocacy Conference in Northern Ireland.

elected two representatives, and centres with more than 100 elected three representatives. At first, 23 were elected and, on 14 April 2005, they came forward to hold the forum’s ‘Parliament’. (That number has risen to 52 since then.) The leaders of the new forum chose the name ‘Seasamh’, which is the Irish word for ‘standing’, and they decided on a logo with trees and hands. Between April and July 2005, elected representatives, with the facilitator, set to work to design a leadership course. Waterford Institute of Technology said yes to granting the ‘Certificate in Leadership and Advocacy’. In the course, students learn about leadership and advocacy, teamwork, communication skills, the history of disability in Ireland, standards of service, programmes and campaigns, and inclusiveness. Students on the course mix with students studying social care. Since March 2006 SOS Kilkenny has worked to spread the advocacy model created by Seasamh in the south-eastern region, to the north-eastern region where Midway Services (based in Navan) are partners in a project called A seat at the table. In 2006, the Dundalk Institute of Technology granted accreditation to the Certificate in Leadership programme. This project is funded by the Department of Justice Equality and Law Reform under its Enhancing Disability Services Initiative. The funding allows the work to get ‘seats’ where decisions are made that affect the lives of people accessing intellectual disability services. A recent report shows that the Seasamh Model is transferable to other parts of the country. Parliament members want to get on ‘boards’ of their services, and into local and regional committees; where they can act as real representatives, no longer just accepting the decisions of others, but as free and equal citizens looking others in the eye and contributing to discussions and decision making. Seasamh members aim to get places on the teams that check how good services are. Seasamh wants to help health professionals and care managers to improve day-to-day health care. Parliament members gave two plenary sessions in the first AllIreland Self Advocacy conference (20–21 June 2006). They also held parallel plenary sessions at the All-Ireland Self-Advocacy Conference hosted in the University of Ulster in Northern Ireland, and were commended for their respective contributions by Dr Patricia O’Brien of the National Institute for Intellectual Disability, Trinity College Dublin. Seasamh representatives also gave three presentations on 28 Frontline Summer 2007

FEATURE: Advocacy

Timothy O’Connell, reporting on the Seasamh project at the European Association of Service Providers for Persons with Disabilities (EASPD) in Vienna, May 2005.

March 2006 during the Active Citizenship Awareness Day at the Gandon Inn in Co. Laois, and again on 2 October 2006, at the Consultation Seminar hosted by the Taskforce on Active Citizenship in Tullamore, Co. Offaly. Mary Davis, the Taskforce chairperson, commended them for the quality and relevance and foresight of their various contributions. Seasamh members took part in the HSE’s Transformation Programme on 29–30 March 2007, in Kilkenny. And in May, the Parliament gave team-presentations at the Rights Seminar in Tullamore, Co. Offaly, and at the ‘Seat at the Table’ National Conference in Kilkenny. Our open-space forums have continued during the year, with a Seasamh Open Forum at the Talbot Hotel in Wexford (30 August) and the presentation of a drama on advocacy at Windmill Therapeutic Centre (also in Wexford). Seasamh’s chairperson, Anita O’Connor (from the Carlow Delta Centre), says: ‘Being asked what we think “first” is really important and that’s why I think this way of doing things really works. When you are asked first, it means that what we say counts and that the things that are done and the way they are done feels right.’ Derek Watson says: ‘I like talking in the meetings now, I think people are beginning to listen, we still need Tim to help us with stuff, but we do more and more of the talking now.’ ‘Conversation’ best describes the facilitative style in Seasamh. It rejects spurious power or authoritarian interventions and it purposefully avoids the temptation to impose meaningless ‘rote’ learning, or to ‘interpret’ participants’ contributions. Unobtrusive interventions are catalytic and aimed to empower. The Seasamh ethos is based on the social model of ‘helping’, not ‘interfering’. Supporting participation in Seasamh, its forum and the leadership course, has also given the participating organisations another way of working together. By giving one-to-one help, transport, and sharing their buildings, centres throughout the region have shown our wider society how much we can achieve (and how they can work together too!). Parliament members are leaders; they draw public and official attention to the concerns they spot and they help to get things done. Anita O’Connor, Chairperson, Seasamh Derek Watson, Publicity Committee Timothy O’Connell, Seasamh Coordinator

Frontline Summer 2007

The Irish Association of Advocates

very person has the right to be in control of his or her own life and in decisions which affect them. However, sometimes, whether through frailty, disability, financial circumstances or social attitudes, they may find themselves in a position where their ability to exercise choice or to represent their own interests is limited. In these circumstances advocates can help ensure that an individual’s views, rights, and entitlements are heard, respected and acted upon. In the context of disability in Ireland, there have been quite a lot of developments in recent times in the area of advocacy. For example, a new personal advocacy service was recently given legislative status under the Citizens Information Act (2007). The Citizens Information Board (CIB)—the national support agency responsible for supporting the provision of information, advice, and advocacy on social services—has been supporting the development of new, community-based advocacy services for disabled people. So far, the CIB has funded over 30 advocacy projects throughout the country. Those seeking formal training in advocacy can pursue a qualification through the Institute of Technology, Sligo. All of these new advocacy initiatives complement the informal advocacy that has existed in Ireland for so long and supports the established advocacy that was already available to some disabled people from organisations such as the Irish Advocacy Network. As the number of people working in the area of advocacy increases and as it becomes more professionalised, those working in the area have sought to come together and share experiences and offer mutual support. As a result, a new organisation—the Irish Association of Advocates (IAA)—was established this year. The IAA is a peer-led organisation, which seeks to support and promote the work of advocates in Ireland. The IAA is committed to a leadership role in the ongoing development of advocacy services in Ireland and to providing support to advocates. The IAA sees advocacy as: ‘Taking action to enable people to express what they want, secure their rights, represent their interests, and obtain services they need. Advocates and advocacy services work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality, and social justice. Advocacy can be instructed or non-instructed.’ The IAA meets regularly to discuss issues of common interest and welcomes anybody working in the area of advocacy to apply for membership. The IAA has developed terms of reference and a code of practice for its members. The IAA code of practice is a set of guidelines for advocates aimed at providing clarity, support, and boundaries for their practice. The code offers a clear description of what is and is not expected of an advocate in their day-to-day work with service users. In the future, the IAA hopes to: ◆ Represent and lobby on behalf of advocates on matters of policy and practice. ◆ Offer peer support and share best practice. ◆ Promote the IAA as the representative body for advocates. Jim Winters, PRO for the Irish Association of Advocates, jim.winters@cheshire.ie Tel: 01-2974127

Contact details for the IAA: Website: http://groups.google.ie/group/irishassociationofadvocates Email: irishassociationofadvocates@googlegroups.com 23

FEATURE: Advocacy

Longford Advocay Partners in Disability provide new professional advocacy service for people with disabilities in Co. Longford This new project is managed by County Longford Citizens Information Service and directed by Longford Advocacy Partners in Disability (LAPD), a steering committee which consists of local organisations who deal with people with disabilities in the county. The project is initially a two-year pilot project, funded by the Citizens Information Board as part of initiative to fund community and voluntary groups to provide professional advocacy services for people with disabilities. The project aims to provide a free, independent, confidential and one-to-one advocacy service for adults with disabilities in Co. Longford. It is based at Longford Town’s Citizens Information Centre, upstairs in the Longford Shopping Centre. The target group for the project is adults with all disabilities (physical, sensory, intellectual or mental health) who live in Co. Longford. On the basis of an understanding of each client’s needs, the advocate will advise and support them in making their own decisions/choices, to claim an entitlement, or take a course of action. Where appropriate, the advocate will negotiate or make a case on a client’s behalf. The LAPD advocate can support clients in order to: ◆ Identify their needs; ◆ Apply for a service; ◆ Make a complaint or an appeal; ◆ Take a case to a tribunal; ◆ Access accommodation, education or training; ◆ Attend case conferences; ◆ Access support; ◆ Access legal advice. To find out more this new service in Longford, you can contact them by telephone (043-41069) or email (longford.disabilityadvocate@citizensinformation.ie). Valerie Maguire, Disability Advocate

Independent personal advocacy service In 2006 the Independent Personal Advocacy Service was developed as part of an initiative to support the development of advocacy services in the community and voluntary sectors in Ireland. The project is run by Inclusion Ireland in partnership with two residential services that have agreed to act as pilot sites for the duration of the advocacy project until 2010.The two locations are Moore Abbey, the Sisters of Charity of Jesus and Mary Services in Monasterevin, Co. Kildare, and St Joseph’s Intellectual disability service in Portrane, Co. Dublin. The project is funded by the Citizens Information Board and has now been running successfully since the beginning of 2006. Under the project Inclusion Ireland, who are the lead agency for the Independent Personal Advocacy Service, employs an advocate (Gerald Mac Cann) to act as a personal advocate to the service users in the two locations. The personal advocate enables service users with an intellectual disability to identify their needs and facilitate choices; he ensures that the service users’ wishes are heard and acted upon. The advocate works with persons with intellectual disabilities to make things that they want happen or change. The personal advocate helps people with disabilities make their own choices and take more control of their lives. What is Advocacy? Advocacy means to speak up for someone. Most of us at some time need someone to speak up for us when we need support. This is particularly the case for people with a learning disability because they are at risk of being ignored. Advocacy is about facilitating the person with a disability to make their voice heard, listened to and answered, and to help them can gain control of their life. Sometimes spoken communication is difficult; in this case the advocate will facilitate their needs and wishes through other alternative methods of communication, or through a process of ‘non-instructed advocacy’, if the person has no communication at all. For more information please contact Gerald Mac Cann, Advocacy Officer, at Inclusion Ireland. Tel: 01-8559891; email gerald@inclusionireland.ie.

STEP Enterprises — Carol’s story Lexi Houston, our Programme Manager, asked a group of mothers from STEP Enterprises to do a talk at the Inclusion Ireland conference in Kilkenny on the 20 June. We were going to be in Kilkenny for our annual mother and toddler respite holiday, so I agreed. I felt very nervous as I haven’t spoken in front of such a large group before. I think people learned from us and I enjoyed sharing my story. Here is my story so far. When Andrew was born in 2004, I had a lot of support from STEP Enterprises and the community nurse. I had visits every week from the family support worker and my keyworker in STEP Enterprises. The Social Support Department in STEP Enterprises helped me to find a parenting course in my area and a community mother to give me practical advice. Now Andrew is three years old, and I don’t need as much support. I still have weekly visits from the family support worker. I feel I have built up the confidence and skills to manage on my own, but I always know supports are there when I need them. Carol O’Reilly, Dublin 24

Frontline Summer 2007

Opinion

The Jericho Syndrome

he reader will remember very well the problem faced at Jericho. The leaders of the people, the executive and their management team, were in the city under threat. But there was a large high wall around them, and whilst they could peek fearfully over the wall to see the threat, it really did not matter. They had closed and barred the gates, and their minds, so that no one could get in. They could return to managing the City in their own way. Unfortunately, there were no Chinese literates on the Team who might have pointed to the Chinese proverb ‘threats have opportunities’. So, what could the leaders have done? What strategy could they have adopted? They could negotiate with the people outside, whom they perceived as a threat. But that might lead to changes in the City that they felt would be uncomfortable; worst of all, the outsiders might want to take over and displace the well known and understood norms of management of the City. They could leave their thick wall and go out and fight a battle—not a good idea because they did not know enough about the people outside. Did they want to impose their ideas, or simply facilitate changes in the process of management for the good of the City? No, the best plan was to hunker down and hope that the outsiders would get fed up and go away. They also thought it might be a good idea to throw sufficient dust in the air so that they could not see out, and better still those outside could not see in! They knew that there were some very skilled craftsmen managers in the City who could manufacture the dust. Now, that turned out to be a bad, bad decision— when faced with what is perceived as a real threat, it is best not to turn away! The outsiders might react in an unexpected way. After all, they had been marching round and round the wall for days, suppose they thought up some unexpected scheme to get at the city leaders, like blowing trumpets! Is this story an attempt by some cult to re-interpret the Bible account in which the people outside were the Israelites and Joshua their Chief Executive? No, it simply provides a way of illustrating a mindset all too often

Frontline Summer 2007

found in leaders. Where does this mindset come from? It may be that there are several contributors: ◆ Our service is of high quality, clients and staff are happy, we have assured funds (inputs) and well-understood expenditure (outputs). Engineers would say ‘if it’s not broken, don’t fix it.’ ◆ We know the future means change, but we have met every previous change and dealt with it. ◆ Nobody understands our process, except us. ◆ We are our own oracle! ◆ We cannot spell ‘strategic thinking’. ◆ We do not have (and if we did we would not use it) a mirror to look at ourselves. By this time, dear reader, you will wonder why this very well written piece appears in Frontline. One of those smart management magazines might be more appropriate! Just take a close look at the army marching around your Jericho. Notice that they are led by a big Drumm. They are marching in six regiments, at the head of the army, behind Drumm, is a banner. Can you see what it says? ‘TRANSFORMATION’. Each regiment seems to have its own banner, one reads ‘IMPLEMENT, others ‘ENSURE’, ‘CONFIGURE’, ‘DEVELOP’. Look even closer at the troops— some carry calculators, others devices for measurement, worst of all, the most brutal-looking soldiers carry very big sticks. Listen to their speech, they use words that are strange to the Jericho language: efficiency, transparent standards, accountability, optimal, cost effective, resource allocation. This army sends shivers down the spine. Yet, if you look into their faces they seem good people who, although a threat, seem to want to bring benefits to the City and, most of all, to the people cared for in the City. They want to change systems that have existed for many years and maybe no longer work. ‘They are not going to go away, you know!’ So those of us managing the ‘City’ of care services in Ireland had better take advice and see if we are suffering from ‘Jericho Syndrome’. If so, we need to get treatment quickly so we can engage with this army—for all our benefit. A.R. Giles 25

Health

Women’s health: An ecological approach What three things are most important in your life? Most people who respond to this question will name good health as fundamental to a life of quality. The expectation of longer life, especially in Europe, no doubt heightens the value placed on health. But, like the pursuit of many glittering prizes, gaining health is not a simple matter. An ecological approach suggests that good health depends not on luck, nor the individual’s characteristics alone; rather, there are many interwoven strands that influence health: early experiences, family upbringing, the social environment, available health systems and the wider environment. Gender, too, determines health; not only do men and women incur different health risks, behaviours and outcomes, but the social, political, economic and global environments exert different influences on men and women. Many citizens in the developing countries—where most of the world’s people with disabilities live—cannot rely on peaceful stability, clean air and wholesome water, and as a result their children’s lives are compromised from the start. Some girls grow to be women in cultures where their gender devalues them all their lives, and the presence of disability is exacerbated by being poor, without a spouse, without income and with scant access to health care. Health disparities Most of the evidence about health disparities for women with intellectual disabilities reflects patterns in the more developed countries. Women in these countries face risks to their physical and mental health that are common to all throughout the lifespan—childhood ailments, accidents, skin complaints, chronic conditions like pain or diabetes, hearing loss, traumatic events such as falls and the onset of depression. Surprisingly, there have been few attempts to develop measures that reflect women’s experiences of health, well-being, illness and disability (Eckermann 2000). We know much more about the distribution of the conditions reported than their impact on the lives of individual women and their families. People with intellectual disabilities prize their own good health: your health is your wealth, commented one woman in her sixties living in a group home in northern Europe (Walsh and LeRoy 2004). But they experience additional risks, as people with disabilities in general are likely to incur secondary conditions, that is, health conditions that are more likely to arise given the presence of disability. People with intellectual disabilities have more health problems than their peers. Evidence from more developed countries suggests higher prevalence rates for epilepsy, diseases of the skin, sensory loss and (increased risk of) fractures, among people with intellectual disabilities. A recent study in the Netherlands found that patients who had intellectual disabilities reported more than twice the number of health problems than their peers, matched for gender and age, on the same GP register. Closer to home, health screening carried out by a community nursing service in Northern Ireland revealed the need for further action in relation to cardiovascular status, sensory deficits, mobility and aspects of sexual health among people with intellectual disabilities (Barr, et al.1999). 26

Fresh thinking about the health of people with disabilities has turned away from a view that equated ‘disability’ with ‘disease’, and toward strategies to promote health and to prevent secondary conditions throughout the life course (Rimmer 1999). What are the implications for women with intellectual disabilities, their families and professionals in promoting good health?

Health promotion In health promotion, as in other domains, individual preferences are paramount. For many women with intellectual disabilities, whether living with their families or in supported residences, the tools they need to make healthier decisions may not be to hand. They may ask for support to identify what changes are optimal, how to make desired changes step by step in everyday routines and what resources—personal, instrumental, financial—are available. However achieved, experts agree that an ounce (or for metrically adept women, 28.4 grams) of prevention is worth a harvest of health benefits. Two topics have immediate resonance for women’s health. A sharper focus on promoting good mental health is indicated. One study found that Canadian women with intellectual disabilities reported higher levels of depression than men. Individuals with higher depression scores were lonelier and had higher stress levels than individuals with lower scores (Lunsky 2003). Further studies in this area will help to tease out the complex factors related to women’s reports of depression and thus help to shape practical interventions promoting their mental health. In some quarters, older notions that intellectual disability is itself a form of mental illness persist, with a result that women—and men—may suffer needlessly without recourse to appropriate treatment specifically targeting a mental health difficulty. A second topic relates to many strands of women’s sexual and reproductive health: management of menstruation, intimacy and relationships; advice on contraception; and information about the menopause. A recent study in the UK concluded that women with intellectual disabilities are at least as likely to incur problems with menstruation as other women. However, it was evident that the women would benefit from information, help with management— especially those women who had male carers—and support in defining the very problems they experienced so they might determine how to construe and respond appropriately to problems. Evidence has emerged about the influence of the person’s environment on health. A study of risk factors for health of people living in different residential settings in the UK found a high prevalence of obesity among women (Robertson, et al. 2000), for example. Individuals living in larger residential campus settings reported lower levels of physical activity. These authors argued that increasing levels of moderate or vigorous physical activity among people with intellectual disabilities would be the single most effective way of improving their health. Health promotion strategies address lifestyle changes for all—more physical exercise, better nutrition and satisfying social supports. Generic strategies must be carefully honed to meet the particular needs of women with intellectual disabilities at different stages of the life course, and in different living environments. Frontline Summer 2007

Health

Health screening Health screening is important in preventing disease and promoting good health. For example, breast cancer is one of the commonest cancers to affect women. Investigators in Australia examined patterns of participation in breast-screening and found that failure to use screening services was highest in women who were unmarried, and was positively associated with severity of intellectual disability, presence of physical disabilities, and urban residence. These authors (Sullivan et al. 2003) commented that while women with intellectual disabilities may be at lowered risk of breast cancer than their peers, efforts must be made to ensure that they have regular access to screening programmes, particularly those in the group aged 50-69 years. Elsewhere, two recommendations were that primary health care professionals should endeavour to recognise health promotion opportunities among older women with intellectual disabilities, and that support services for women living in community group homes could be provided with better training and resources to improve breast cancer screening in this vulnerable group (Davies and Duff 2001). When women seek health care, access hinges on adequate information for them, their families and carers. Health professionals are typically responsible for information about critical or long-term health care. It is widely recommended that training programmes for professionals should target competence in this area. In practical terms, GPs, nurses, therapists and careworkers may have to make allowance for the longer consultation time involved (Grover 2002), and making equipment accessible to people with disabilities.

Health information: European context The European Union has responsibility for public health policy at Community level, yet citizens with intellectual disabilities (an estimated 4.5 million persons) are invisible in public health initiatives. The Pomona project (www.pomonaproject.org), funded by the European Communities DG-Public Health, takes its name from the Roman goddess of fruitfulness. From 2002–2004, partners developed a set of 18 evidence-based health indicators for people with intellectual disabilities, grouped under four categories: demographic information, health status, health determinants and health systems. First steps were to review scientific evidence and consult with self-advocates, family members and health professionals to develop indicators about aspects of the health status, health determinants and health systems relevant to women and men with intellectual disabilities. Currently, the Pomona-2 project (2005-2008) involves partners from 14 countries of Europe. The list of indicators is at the core of a detailed survey instrument, now translated into 13 languages, including Slovenian and Lithuanian. The pilot study has been completed, and partners will gather health information in their countries during 2007. One outcome is a reliable and valid tool that will yield information on the health of people with intellectual disabilities so that any negative disparities may be identified and addressed, and their healthy aging may be monitored over time.

Summary Some pathways to improving health among women with intellectual disabilities have been charted, if not fully explored. Core elements are lifelong education about health, good communication with health professionals, responsive living and working environments, effective health promotion strategies and Frontline Summer 2007

better access to health systems. Service providers might adapt environments, both physical and social, by working in collaboration with women themselves. At systems level, health professionals are urged to examine how to embed certain competences in training—such as taking time and communicating effectively with women who have distinctive needs. Policymakers in Ireland and throughout Europe will benefit from robust health information that will enable them to chart trends, make comparisons and measure the impact of interventions. Patrica Noonan Walsh, University College Dublin References Barr, O., Gilgunn, J., Kane, T. and Moore, G. 1999 Health screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland, Journal of Advanced Nursing 29 (10), 1482-91. Davies, N. and Duff, M. 2001 Breast cancer screening for older women with intellectual disability living in community group homes, Journal of Intellectual Disability Research 45 (3), 253–7. Eckermann, E. 2000 Progress in development of gender indicators, pp. 11-14 in Dialogue for Women’s Health Rights: Report of the Southeast Asian Regional GO-NGO Policy Dialogue on Monitoring and Implementation of the Beijing Platform for Action, 1-4 June 1998, Kuala Lumpur. Grover, S.R. 2002 Menstrual and contraceptive management in women with an intellectual disability, Medical Journal of Australia 176 (3), 108-10. Jansen, D. E. M. C, Krol, B., Groothoff, J. W. and Post, D. 2004 People with intellectual disability and their health problems: A review of comparative studies, Journal of Intellectual Disability Research 48 (2), 93–102. Linehan, C., Walsh, P.N. et al. 2006 Interim report: Pomona-2. (Available on project website: www.pomonaproject.org) Lunsky, Y. 2003 Depressive symptoms in intellectual disability: Does gender play a role? Journal of Intellectual Disability Research 47 (6), 417–27. Rodgers, J., Lipscombe, J. and Santer, M. 2006 Menstrual problems experienced by women with learning disabilities, Journal of Applied Research in Intellectual Disabilities 19, 36473. Rimmer, J.H. 1999 Health promotion for people with disabilities: The emerging paradigm shift from disability prevention to prevention of secondary conditions, Physical Therapy 79 (5), 495-502. Robertson, J., Emerson, E., Gregory, N., Hatto, C., Turner, S., Kessissoglou, S., and Hallam, A. 2000 Lifestyle-related risk factors for poor health in residential settings for people with intellectual disabilities, Research in Developmental Disabilities 21, 469-86. Straetmans, J.M.J.A.A., van Schrojenstein Lantman-de Valk, H.M.J., Schellevis, F.G. and Dinant, G.J. 2007 Health problems of people with intellectual disabilities: The impact for general practice, British Journal of General Practice 57, 64-6. Sullivan, S.G., Glasson, E.J., Hussain, R., Petterson, B.A., SlackSmith, L.M., Montgomery, P.D. and Bittles, A.H. 2003 Breast cancer and the uptake of mammography screening services by women with intellectual disabilities, Preventive Medicine 37 (5), 507-12. Walsh, P.N. and LeRoy, B. 2004 Women with disabilities aging well: A global view. Paul H. Brookes. Baltimore. 27

Health

Epilepsy — did you know? During the time of the ancient Greek doctor Hippocrates, treatments for epilepsy included eating hippopotamus testicles and drinking tortoise blood!! I promise you, that is not what you are going to be told here.

What is epilepsy? Epilepsy is a chronic disorder with recurring seizures of unknown cause. Anyone can have a seizure, if the brain is exposed to a strong enough stimulus. It is estimated that there are 30,000 to 40,000 people with epilepsy in Ireland. The impact of epilepsy will vary from one person to another. For most people, epilepsy will affect their life for a short period of time; however, for others it may have longer lasting impacts. People use different words when talking about their epilepsy. Some say they have seizures; others call them fits or ‘funny turns’. Some causes of epilepsy are unknown (idiopathic); other causes may include being born with the condition, the result of an infection, a motor accident, a brain tumour, poisons (toxins) or perhaps a serious electrical shock or chemical irritation.

Classification of Epilepsy The World Health Organisation in 1980 devised an international classification system for the various types of epilepsy: Partial seizures ● Simple partial ● Complex partial

Generalised seizures

● ● ● ●

Absence seizures Myoclonic Tonic seizures Tonic Clonic seizures

Status Epilepticus Status epilepticus refers to a number of seizures with no recovery between each one. This is considered a major emergency, requiring immediate medical assistance.

you’re in a dangerous place (e.g. on a busy road or staircase). If possible, they should put a blanket or towel under your head. They shouldn’t put anything in your mouth. When the seizure is over, you should be rolled onto your side (into ‘the recovery position’). Sometimes you may be confused after the seizure and you may need to sleep. Someone should stay with you until you are fully recovered. An ambulance should be called if the person with you is unsure how to help you, or if the seizure lasts longer than five minutes.

A seizure diary It can be helpful to make a note of several things about seizures and what may have triggered them. ◆ What time did the seizure occur? ◆ What parts of the body were involved (e.g. arms, legs, face)? ◆ Did the person lose consciousness and if so for how long? ◆ Was the person incontinent of urine / faeces? ◆ Did the person bite their tongue? ◆ Did the person suffer any injury? ◆ How responsive was the person immediately after the seizure? You can keep this kind of information in a ‘seizure diary’. Dates and times of the seizures should be recorded, as well as other relevant information such as changes in medications, infections, hormonal changes (e.g. menstruation, menopause). This should be shown to your doctor to help him/her decide what treatment / medication is best for you.

Staying safe with epilepsy

What can trigger or cause a seizure? An infection, lack of sleep, overtiredness, stress or worry, too much alcohol, loud noises or flashing lights Once the likely triggers are known, it may be possible to avoid them and to limit the number of seizures. When you have a seizure While there are many types of epileptic seizures, some will affect your consciousness, breathing and may cause injury if you fall. It is important someone to stay with you all the time. If you are standing, someone should support you to ease your fall. They should loosen your clothing, but not move you unless 28

Many people can lead a normal life with epilepsy. However it is important to look after yourself, and your carer or family may be able to help you here. A healthy diet is very important. Constipation may trigger a seizure, so a high-fibre diet is important, as well as an adequate fluid intake. It is important to keep active, but you should avoid unnecessary stress. Relaxation techniques can help, and, of course, regular rest and sleep. It is important that the people around you know that you have epilepsy—they should be aware how long a seizure may last and what they can do to help. You, and they, need to be aware of the possible dangers at home and in your daily environment. You don’t want to be over-protected, but you do need to know that you are in a safe place. Frontline Summer 2007

Swimming If your seizures are frequent, don’t put yourself in danger by swimming on your own. It is usually safer to swim in a pool, rather than in the sea. Although it may seem like invading your privacy, you should tell pool attendants/ lifeguards about your epilepsy and check that they know how to support someone when they have a seizure.

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Identification A special identity bracelet or neck pendant is a stylish way of tell people you have epilepsy—at the same time allowing you to keep some privacy. You should also carry a card with details of your medication and emergency contact numbers.

Medication Seizures may happen if you forget to take the medication or tablets prescribed by your doctor. Because the medication may need to be taken over a long period, you may need help to remember when to take it— maybe an alarm clock or mobile phone alarm. You can use blister packs/boxes with labelled compartments for each day of the week, or you might mark off the days on the calendar to show you have taken your medication. Carers/family members can help you, if necessary. There may be some side effects from taking the medication, but if you continue to feel unwell for more than a few days you should discuss this with your doctor. The medication may not stop the seizures completely, but it does help to reduce them. Do not stop taking your medication unless your doctor says that it is OK!

Support Living with epilepsy affects people in different ways and it is important to be aware of the support mechanisms available. You can talk to your doctor and nurse, and your family or carer, about your epilepsy. There are also some very good epilepsy support groups and specialist services. Two valuable website resources are www.epilepsy.ie and www.epilepsy.com. Liz McKeon, Lecturer in Intellectual Disability Nursing, Dublin City University. Frontline Summer 2007

SPEAKING UP: A plain text guide to advocacy, by John Tufail and Kate Lyon. London, Jessica Kingsley Publishers (2007). Individual volumes £13.99/14.99; 4-volume set, £45.00. Introducing advocacy: ISBN 978 1 84310 475 9 Rules and standards: ISBN 978 1 84310 476 6 Listen up! Speak up!: ISBN 978 1 84310 477 3 Advocacy in action: ISBN 978 1 84310 478 0 4-volume set ISBN: 978 1 84310 474 2 This is a series of four short books for people with disabilities, looking at advocacy and the things needed to start out as a selfadvocate. The reviews here of three of the books should encourage many people to investigate the full series, both for individuals and for self-advocacy groups. INTRODUCING ADVOCACY (Book One) The word advocacy is a term that is being used ever more increasingly within the social services and civil and human rights circles in the context of working with children, people with disabilities and people with mental health problems. Advocacy is described as ‘speaking on behalf of a person or empowering that person to speak for him or herself’ (Citizens Information Board). In a time where the emphasis is on promoting people’s rights, Tufail and Lyon have recently produced an excellent and timely publication Introducing advocacy, which aims to promote self-advocacy to disabled individuals who want to learn to speak up for themselves. This book is a manual for promoting self-advocacy and equal partnerships between advocate and user. Authors Tufail and Lyon, directors of People’s Advocacy Network in New Zealand, are well experienced in the field of advocacy. The book is clearly written and is consistent in style and presentation. The contents are set out over ten chapters which outline the different models of advocacy. The text is pitched at a level for the reader to gain a basic understanding of each model and each chapter provides the reader with a range of questions to help them recap on the content and raise questions of their own for discussion. The authors cleverly capture the reader’s attention with colour illustrations that provide visual stimulation throughout each chapter. The use of such illustrations could allow the reader time to reflect on the content of the text and also help engage those readers who require extra assistance with their literacy skills. As the book is intended to serve ‘as a training aid to expand the life skills of the individual with learning difficulties’, perhaps the encouragement of the use of drawing and art could have been promoted and built upon in the questions section of each chapter, as a means of getting readers to express and communicate their views on the topic area. Advocacy draws attention to the need for the individual’s views to be expressed, communicated and understood by those around them and that advocacy is not what other people think the individual wants. Tufail and Lyons clearly and consistently reinforce this message throughout the book and illustrate this through the 29

Reviews use of well-devised case studies to which most people can relate. The case studies presented in relation to the different types of advocacy (whether citizen advocacy, crisis or intervention advocacy or health-complaints advocacy) generate and trigger thoughts in the reader which can help them to reflect and identify situations in which they may have found themselves. The reader is prompted by the information presented to begin to think of ways in which such difficulties could be resolved and addressed in their own case. The central argument of the book is that advocacy must be individualised and it offers a clear approach highlighting the advantages and disadvantages in engaging and working with an advocate. Many people who require advocacy services often need to be initially informed that such services exist for them. Often healthcare professionals and voluntary agencies are best placed to provide this information, but one must pose the question ‘does this happen?’, and if not, why not? In reading this book and through consultation with others, one realises that perhaps professionals may not be as knowledgeable and as informed about the subject area as we would like. This book is the ideal tool to equip and inform the professional in promoting advocacy for their clients. The role of the advocate, the range of advocacy services and their aim and functions are clearly set out, as well as what should and should not be expected of an advocate. Each chapter can be read or referenced individually or as part of the integrated manual. The overall view of the book is that it is factual and provides a good and comprehensible guide to the range of advocacy services and models available to the vulnerable person living in general society, residential and community settings. Advantages and disadvantages of the various advocacy models are highlighted, which is helpful to the person seeking an appropriate service to address their needs. Although the authors state that the book is aimed at promoting advocacy and self-determination for people with learning difficulties, the content is transferable and adaptable to promoting advocacy for any member of the community. It is a good read, informative, and an excellent training package. Valerie Mary Ross and Damien Brennan, School of Nursing and Midwifery, Trinity College Dublin.

LISTEN UP! SPEAK UP! (Book Three) I was very excited to see the title of this book I thought it would be something to help me to speak up for myself. For many years now I have wanted to speak up at meetings. Or when people are talking about me it’s like I am not there, and I want to shout out I have a view. I am always too nervous and afraid to make a fool of myself by saying something stupid. This book gave me great hope. At first look it had bright pictures and lots of signs which were easy to follow. The book is made up of six parts. 1 Be strong for yourself 2 Roy’s story 3 Listening 4 Points of view 5 Speak up at meetings 6 Why don’t you practise? I liked Roy’s story the best, as it was very true of lots of things which happens to anybody with a disability when nobody listens to us. I was given great hope when Roy won out and his life changed, thanks to him speaking out and not taking ‘no’ for an answer. Part 5 was also great. It was about meetings and will be of help to self-advocates, but it would take some strength to stop a meetings or to let the people attending the meetings know that you cannot understand what they are talking about. I know I get bored at meetings as people talk too fast and I lose track. 30

I think all self-advocates should have a copy of this book to bring along to meetings to help them get more out them. The only thing I didn’t like about the book was that some of the words were hard for me to read and understand, but still it is a very good book to help someone like myself to speak up. The book will also be very helpful to people dealing with selfadvocates as well as the advocates themselves. Deirdre Spain, Dublin

ADVOCACY IN ACTION (Book Four) I’ve read the book about Advocacy In Action. The story was about a girl called Dilly. She could not speak and had a problem saying words and had epilepsy and had to take medication, a lot of it. Dilly found it hard to understand things or work things out. Other people had to make decisions for her and I think that Dilly should have made her own decisions, because everyone has the right to make their own decisions. People in the house with Dilly said she had a bad temper and they took her to the doctor to see what he could do. The doctor put her on medicine three times a day and I think her medicine made her worse. When she was bad tempered she used to shout, throw things around the house and people used to complain about her a lot. The staff had to call her father in for a meeting to see what they could do to help Dilly with her problem. The meeting went on, but Dilly was not at it. I think it was wrong not to ask her to their meeting and it was her right to be there because the meeting was about her. The staff and her father said they could speak for her, but she should be able to speak for herself. Later on Dilly was able to speak for herself and I think that was great, because selfadvocacy people should be able to speak for themselves and people who can’t could ask people to speak on their behalf. Dilly improved a lot and had a support worker. She went out a lot and did exercise and played music. That is important that she could go out and do her own thing, isn’t that great now? Advocacy is about helping people and speaking up for themselves. It is good when people do that. Communication is about understanding. Everyone can communicate, someone who can’t talk at all can communicate, but most people don’t think about it because it is too hard. It is important that you communicate with people and help them, and not to get lazy and blame people when they cannot understand. Advocates can communicate by phone, also by letter or email or fax. They can set up a computer conference or use Braille or signing. It is great for self-advocacy people to do that sort of work. Self-advocates who communicate at a self-advocacy meeting should be careful what they say, but what they say should stay where the meeting was. That is very important. Self-Advocacy people have the right to say what they want to say. That’s another good thing about going to advocacy meetings. Selfadvocacy people can go to their organisation if they want help with their problem and sort it out. Self-advocacy people can live independently, do their own thing and get support and help and advice if they need it. Rights are very important for everyone, not only self-advocates, but everyone else too. In the story in the book, Mandy did not have a wheelchair and the advocacy group helped her to get it. They had to write lots of letters to get it. Eventually she got her wheelchair. It was right she got it and that, then, she could get around and about. Paul Alford, Dublin Frontline Summer 2007

Meeting the Needs of Children with Disabilities: Families and professional facing the challenge together, by Helen K. Warner. London, Routledge (Taylor & Francis) (2006). ISBN 0-41528038-9. While the child with disability has similar needs to any child in society, he/she also has additional and unique needs requiring specialist approaches to care. The aim of this book is to highlight the principles that define the fundamental aspects of care delivery to children with special needs. Areas of knowledge and practical skills explored include: the social and historical context, challenging assumptions, best practice for giving news to parents, communication methods, play and movement, nutrition and feeding, boundary setting, respite care and transition into adult services. The content of this book is based on practice areas identified by the English Nursing Board as essential for student nurses. However, the reviewer supports the notion that this book will actually be invaluable for qualified nurses and other health professionals working with children with disabilities in a variety of settings. The book is one of few books that separate the needs of children from those of adult, and which plans accordingly. The first four chapters are quite theoretical, exploring the fundamental needs of children with disabilities and examining the sociological, historical and ethical perspectives. While these four chapters are all important, student nurse will find the following ten chapters more interesting and practical, as they offer key constructive tips on caring for children with a disability. Warner offers some recommendations for changes and implementation of policies in organisations and health trusts. The reviewer found Chapter Eight particularly useful as it provides some concrete information important for understanding the complexities of eating and drinking for a child with disability. In the final chapter of the book, Warner offers a summary of each chapters and key recommendations for the future. Her final words suggest there should be an emphasis on preparation for the child with disability, especially in terms of admission to respite care and preparing to meet the developing needs of the child with disability. While this book is aimed at the UK audience and makes reference to key UK documents, framework and policies, the core issues discussed are also applicable for the Irish setting. This paperback book is well presented and concise in nature, an allimportant trait that may entice the student nurse to read it. In summary, while the book would not suffice as a core text for student nurses in the Irish setting, it will provide some valuable background information and a good reference base for issues relating to the needs of children with disability. Carmel Doyle, School of Nursing and Midwifery, Trinity College, Dublin.

STEP BY STEP GUIDE TO BASIC COOKERY, Yvette Ebbs and Shirley Conlon (2007). STEP Enterprises, Carmanhall Road, Sandyford, Dublin 18. €39.95+pp. Tel: 01-2952379; email: yvette.ebbs@sjog.ie; shirley.conlon@sjog.ie. During 2005, Yvette Ebbs and Shirley Conlon ran a basic cookery course (at Dún Laoghaire College of Further Education) for ten STEP Enterprise service users who were given the opportunity to buy, prepare and cook healthy meals. They were also taught about personal hygiene and safe cooking. The class was very successful, Frontline Summer 2007

but they soon realised that a basic cookbook would enable individuals to develop their cookery skills in their own home, and in their own time. Not finding a suitable publication on the Irish market, Ebbs and Conlon decided to try to fill the gap. They have produced the Step by step guide to basic cookery, which comprises a sturdy A4 ring-bound illustrated book and an accompanying DVD. I asked Bridie Smith (B. Ed. In Home Economics) and mother of an adult son with an intellectual disability, to review the publication. Here are her comments on the book. ‘This is an excellent cookery book, simple and easy-to-follow, and beautifully illustrated. The recipes are nourishing and inexpensive. The ingredients are mainly local, easy to source, with the bonus of being very familiar. Using this book should provide many hours of fun activity and interaction, whether with staff or friends or family. It would make a lovely present! With both safety and flavour in mind, the cooking time for the stew should be extended to one hour and 20 minutes, instead of just 30 minutes. For the half-pound of meat specified in the recipe, and the added tin of oxtail soup, using a full stock cube seems excessive—in any case I would prefer the flavour of Knorr cubes rather than Oxo, or preferably the use of fresh herbs, if they are available.’ Unfortunately Bridie did not have an opportunity to view the accompanying DVD, which gives a second visual approach to the procedures already described and illustrated in the book. The cookery course, in both book and DVD, is well organised in separate, brief sections. Breakfast choices include instructions for fried, poached, scrambled and boiled egg, and for porridge and bacon and sausages. Lunch recipes are for omelette, hamburger, baked potato with various fillings, and a basic salad. The preparation and cooking of several vegetables is covered in one section, and a separate ‘chapter’ gives three ways of cooking potatoes. Dinners include salmon, pork chop, shepherd’s pie, spaghetti Bolognese, Irish stew and chicken stirfry (not on DVD). This cookery course is just, forgive the poor pun, ‘what it says on the tin’. It is a step-by-step guide. And it is basic. There are few variations—no pasta fresca or Moroccan stew, and sadly, no desserts (but, of course, healthy fresh fruit needs no cooking)! The equipment shown is an electric cooker and a George Foreman grill (rightly considered both healthy and safe to use). Slightly different techniques are necessary when using a gas cooker safely, and using a microwave has become an everyday skill for most of us. (Admittedly, as Bridie pointed out, the microwave may lead just to the dreaded ‘ready meal’, without learning any real cooking skills.) As already said, this is a basic book/DVD—further support will be needed for new cooks in their individual settings and for their individual cooking preferences. Congratulations to Yvette and Shirley, and TO STEP Enterprises, for undertaking the huge task of putting together and publishing this dual-media course. It will be very useful for individuals in their own kitchen, and the DVD provides added value for groups in preparation for independent living. It presents a valuable firststeps approach to the world of cooking, giving readers/viewers the essential skills to venture further as they develop a taste for cooking (too many puns, sorry). Bridie Smith, B.Ed. in Home Economics, Mary de Paor

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Frontline has been published since 1989 and deals with issues of interest to both frontline workers and parents of those with a learning disability