The Frontline of Learning Disability

OF LEARNING DISABILITYfrontline

the

Advocacy

Stop Bullying

Women’s Health

NO. 70 SUMMER 2007

ContentsfrontlineNO. 70 SUMMER 2007

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

Frontline is a ‘not for profit’organisation, formed solely topublish the magazine Frontline.Copyright resides with theindividual authors, but permissionto reproduce any article must beobtained in writing from Frontline.

Views expressed in Frontline arethose of the authors themselves andnot necessarily those of the editoror editorial board.Letters to the editor are welcomed.Name and address should beprovided; they will be publishedunless otherwise requested.Articles may be submitted forpossible publication in Frontline.Guidelines for authors are availablefrom the editor.Items on meetings, conferences etc.for Noticeboard should besubmitted well in advance ofevents, to meet Frontline’spublication schedule.

Frontline editorial address forletters, articles and other items forinclusion:The Frontline of LearningDisability Ltd,PO Box 69, Bray, Co. Wicklow.Telephone: 01-276 5221;Fax: 01-276 5201;e-mail: [email protected]: www.frontline-ireland.com

EditorMary de Paor

Deputy EditorJim Jordan

Editorial BoardMary de PaorMitchel FlemingColin GriffithsStephen KealyAidan ButlerJean SpainLiza KellyNicholas MaxwellMichael McKeonKathy O’GradyÁine O’Neill

Published byThe Frontline ofLearning Disability Ltd

ProductionNiamh Power

SubscriptionsHelen Dunne

Typeset byWordwell Ltd

Printed byRuon Print

ISSN 0791–1270Published Quarterly

06 Peoples’ PagesStop Bullying!

10 Home again at Tigh an Oileáinby Mary de Paor

12 Streetwiseby Audrey Carroll, Hilary Keppel and SergeantAngelene Conefry

14 Moving from a long-stay institution to a community-based residential programme for persons withintellectual disability: the views of familiesby Owen Doody

16 Gallery: St John of God National Art Exhibition

25 The Jericho Syndromeby A. R. Giles

26 Women’s health: An ecological approachby Patricia NoonanWalsh

28 Epilepsy — did you know?by LizMcKeon

FEATURE18 Doing disability research: equal lives for equal people

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

20 ‘Our Voice’ advocacy serviceby Martina Kilgallon

22 Seasamh model of leadership and advocacyby Anita O’Connor, Derek Watson and TimothyO’Connell

23 The Irish Association of Advocatesby Jim Winters

24 Longford Advocacy Partners in Disabilityby Valerie Maguire

24 Independent personal advocacy serviceby Gerald Mac Cann

24 STEP Enterprises—Carol’s storyby Carol O’Reilly

REGULARS03 Editorial

04 NewsAdvocacy: Current developments in the CitizensInformation BoardLong stay health chargesAdvocacy studiesNational self-advocacy conference 2007Chronic disease management in people withintellectual disability

29 ReviewsSPEAKING UP: A plain text guide to advocacyMeeting the Needs of Children with Disabilities:Families and professional facing the challengetogetherSTEP BY STEP GUIDE TO BASIC COOKERY

Frontline Summer 2007

THIS ISSUE OF FRONTLINE could almost be considered ‘a retrospective’—a one-time editor going back over old ground. Nearly ten years ago (Issue 33, January1998), we published a feature on self-advocacy, and, as guest-editor of this issue, Ithought it might be useful to chart what has been happening more recently inthat area. It is very encouraging to see that a great deal is happening, and at anoverdue but accelerating pace. Recent legislation has given Comhairle (now CIB—Citizens Information Board) responsibility for the development of an effectiveadvocacy network nationwide, and it is engaged in building up a range ofservices, benefiting from the previous groundwork of many individuals anddisability service organisations. My hope was to put together a few pages to showwhat is being done in the area; but the magazine is nearly filled with ‘advocacystories’. I must thank Liza Kelly (Inclusion Ireland) and Máiríde Woods (Advocacy

Executive, CIB) for sourcing the articles for me, and each of theauthors and groups who responded. We can read about theenergies of self-advocacy groups—such as Seasamh in Kilkenny andthe Stop Bullying group who met at the National Institute forIntellectual Disability (Trinity College) and the Institute’s Transfer ofKnowledge research programme—and about several advocacyservices on behalf of those who are less able to speak up forthemselves—the advocacy officers of Inclusion Ireland, CheshireIreland, community-based services in Sligo and Longford, and thenewly-formed Irish Association of Advocates.

Broadening the concept of advocacy further, Patricia NoonanWalsh and Liz McKeon (and IASSID Physical Health Special InterestGroup conference) advocate advances in the good-health status ofpeople with disabilities. Owen Doody recounts a study which gavea voice to family-members of people who had been moved froman institution to a community-based residential programme. TheStreetwise programme was devised in order to help individualswith intellectual disabilities live more confidently and safely intheir community and, also, to foster more comfortable relations

between them and members of the Gardaí. A.R. Giles appears to advocate thatmanagers of disability services should have more empathy with the HSE!

Advocacy in action is certainly evident in the heart-lifting story of Tigh anOileáin. Again, this is a story that harks back—in fact, to Dr Noreen Buckley’sinterview with the O’Connell family on Valentia in the very first issue of Frontline18 years ago.

Eighteen years, and the magazine is still in existence. But in order for it tocontinue, and to improve, the Frontline editorial board needs new ideas and newblood—and not least, a transfusion of resources! As an example, Frontline badlyneeds a website-maintenance person—and the current editorial personnel are notcompetent to take on that responsibility. It would only take a few hours, just fourtimes a year—any volunteer??

Mary de Paor

editorial Standing up and being counted

“The Streetwise programme

was devised in order to help

individuals 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”

Frontline Summer 2007 3

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.

Advocacy: Current developmentsin the Citizens Information BoardThe Citizens Information Board (formerly Comhairle) hasestablished new advocacy services which aim to ensure that everyperson—whatever their degree of disability—will have their road toservices smoothed, with an advisor to assist them to participate asfully as possible in all areas of Irish society—whether they just needinformation so they can advocate for themselves, or whether theyneed a trained person to undertake the job for them. In addition toits mainstream information, advice and advocacy channels, the CIBwill be responsible for three strands of disability advocacy as set outin the Goodbody report which was commissioned in preparation forthe Citizens Information Act 2007. There are three strands in thedisability advocacy service. The first strand is the Personal AdvocacyService (PAS), providing a direct advocacy service to the public. It isenvisaged that this service will deal mainly with serious complaintsand appeals. It will be developed on a phased basis, initiallyaccommodated in the Citizens Information Board premises inDublin.

The second disability advocacy strand is the Community andVoluntary Programme for people with disabilities, currently beingexpanded from the existing thirty projects nationwide. The thirdstrand envisaged is a Community Visitors Programme for people inresidential care. The CIB will undertake a feasibility study on thisprogramme, in the light of other developments in the area.

The Comhairle advocacy guidelines (guiding principles andoperating procedures for the delivery of advocacy services throughcommunity and voluntary organisations) (2005), prepared byGoodbody 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 charges2007 had been designated the European Year for EqualOpportunities for All. The Equality Authority has been given thetask of leading the Irish activities for the year. Inclusion Irelandsecured a small grant under the Burning Issues fund for the year toraise awareness with people with an intellectual disability and theirfamilies on the Long Stay Health Charges. [They] will be distributinginformation leaflets that will answer the many questions thatpeople 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 tobring to the Minister for Health and Children on addressing themany 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 underthe repayment scheme for earlier charges which were found to

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have been illegal. Inclusion Ireland believes there are many peoplewith an intellectual disability who paid some or all of theirDisability Allowance to a service provider under the illegal charge,but have not made a claim for repayment. If you are, or if youknow someone who may be entitled to a repayment contactInclusion Irelandfor information on how to make a claim. Pleasenote 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, FoleyStreet, Dublin 1, tel: 01-8559891, email: [email protected].)

Advocacy studiesThe Higher Certificate in Arts in Advocacy Studies (lifelonglearning programme) is run at the Institute of Technology, Sligo, inpartnership with the Citizens Information Board and the EqualityAuthority. The programme is offered by distance learning intwelve modules over a two-year period. Face-to-face elements ofthe course are delivered normally on the first Saturday of eachmonth. The course has been delivered at three centres: Limerick,Sligo and Dublin. It is intended to develop additional modules tothe course which, on completion, will lead to a BA in AdvocacyStudies. Applications and further information and available fromAndrew Long, Advocacy Course Administrator, School of Businessand Humanities, Department of Humanities, Institute ofTechnology, Sligo. Tel: 071-9137234; email: [email protected]

National self-advocacy conference2007

Inclusion Ireland held a hugelysuccessful conference for self-advocates in the OrmondeHotel in Kilkenny on 20–21June 2007. The annual eventfor self-advocates is increasingin popularity every year. Thisyear the theme was‘relationships andfriendships—getting thebalance right’.

The conference included presentations from self-advocates, anopen forum and workshops. The presentations covered the topicsof making friends, supported parenting and dating.

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Seamus Doyle (at the microphone), withDenis Twomey and Padraig Reilly (KARE).

(l.-r.) Rita Quirke, Elizabeth Breen, Lavinia Donoher, Ann MarieMcDermott and Bridget Proudfoot (SCJMS).

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The workshops were around the topics of speaking up,living safer sexual lives, decision-making, enabling connectionsand human rights. Participants in the workshops had thechance to learn and discuss the topics. There were openforums throughout the two days where participants couldraise issues from the floor.

Many of the participants danced the night away at the galadinner dance on the evening of the first day of theconference. There was a large attendance at the conference,with 265 participants. A conference DVD and a book ofquotations will be available shortly. For more informationcontact Liza Kelly at Inclusion Ireland (email:[email protected]).

Sarah Lennon,Inclusion Ireland.

Chronic disease management inpeople with intellectual disability21—23 May 2007, at Monash UniversityConference Centre, Prato, Italy.

The aim of this three-day conference, held 21–23 May 2007,at Monash University Conference Centre, Prato, Italy, was todevelop a framework from which to base the developmentof strategies for the management of chronic disease inpeople with intellectual disability. This conference was aRoundtable of the Physical Health Special Interest Group(Health SIRG) of the International Association for theScientific Study of Intellectual Disability (IASSID).

The conference focussed on the essential elements ofsuch 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. Inthe afternoons, facilitated group discussions explored anddebated preset questions. While the primary aim ofdeveloping a framework was not fully realised, participantsreported useful findings from the groups. Information wasshared on specific conditions with long-term consequencessuch as epilepsy, mental health issues, and spasticity. This willhelp to inform discussions on improving health outcomes forpeople with intellectual disability internationally.

Day One focussed on the current evidence-base forpractice. Speakers included Associate Professor Bob Davisfrom Monash University, Australia, who had convened theconference. He highlighted the importance of managingchronic disease and the impact this management has onhealth care systems. How health care is delivered isimportant for people with intellectual disabilities and is evenmore important if they are coping with a chronic condition.

5Frontline Summer 2007

Health services need to have basic information around theconditions that are more common or specific to people withintellectual disability, for example, Down syndrome. Otherrelevant long-term health issues are epilepsy, vision andhearing impairments, obesity, under-nutrition, dental andmental health problems. Acknowledging that people withintellectual disabilities are particularly vulnerable to a rangeof chronic medical and mental-health problems, ProfessorDavis identified the need for awareness of thesevulnerabilities, in order to assist people to receive bettercare, better management of their condition and moreanticipation of problems that might occur. He called forimproved communication between all those involved in thecare of people with intellectual disabilities and heemphasised the additional need for support from specialistgroups. Day One also included presentations on monitoringthe health of people with intellectual disabilities within theEuropean health surveys and educating health professionals.

The theme of Day Two was ‘Developing best practice inchronic disease management’. The keynote presentation,‘Responding to the epidemic of chronic disease in Europe’,given by Ellen Nolte of the European Centre on Health ofSocieties in Transition, generated much discussion amongstparticipants. The following parallel sessions included diseasemanagement strategies, health monitoring, impact of dualdiagnosis and the health experiences of individuals withintellectual disability.

Day Three focused on developing models of health carefor chronic medical illness management, with a keynoteaddress from Dr David O’Hara who looked at healthdisparities and inequalities and the issues for people withintellectual disabilities. He identified primary-carechallenges, including health promotion, education andscreening, and he highlighted the need to promote self-determination amongst people with intellectual disabilitiesas a means of reducing health disparities. He gave examplesof how technology can support people to become moreinvolved in their own health care. Parallel sessions on DayThree included a systematic review on organising health-care services for persons with an intellectual disability,empowering individuals to improve their health and wellbeing, and health assessments in adults.

The conference provided a discussion forum for peopleseeking to promote evidence-based practice in chronicdisease management for those with intellectual disabilities.It was informative and heartening to see the level ofinterest in furthering both research and best-practice in thisarea. Personally, it has heightened my awareness of therange of health-related issues for people with intellectualdisability and the need for a coordinated response to meetthese needs. The conference also highlighted theimportance of promoting self-determination for allindividuals in society and the supports needed to facilitatethis.

Deirdre Corby,Dublin City University.

[email protected]

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People’s pages

We are a group of self-advocates and colleagues from aroundIreland. 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, KelleyJohnson, Elizabeth Mannix, Stephen Curtis, Emer Keenan

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

about her experience.

IF I GET BULLIED I STAND UPAND DEFEND MYSELF, PUTMY HAND TO THE PERSONIN FRONT AND SAY “BACKOFF” A COUPLE OF TIMES.

SO THE PERSON WOULDGET THE MESSAGE LOUD

AND CLEAR.“LEAVE ME ALONE.”

IF A PERSON ASKS ME TO DOSOMETHING I CAN’T DO, ITURN AROUND AND FACE

THE BULLY AND SAY “NOSPELLS NO”,WHICH MEANSNO I WON’T DO WHAT YOU

ASK ME TO DO.

IF A PERSON TELLS ME HOWTO ORGANISE MY LIFE FORME, I LOOK AT THE BULLYAND SAY NOT IN SUCH A

RUDE WAY. I WILL SORT OUTTHE WAY I WANT IT TO BE.

WHAT YOU’RE DOINGRIGHT HERE AND NOW.

A BULLYING POEM — HELEN DONNELLY

STOP BULLYING!STOP BULLYING!

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People’s pages

Waiting at the Bus Stop: Role Play — Shane ByrneI was slightly nervous before I started therole play. But I was ok when I got into themiddle of the scene. I was standingwaiting for the bus. I was just standingthere minding my own business. Suddenly3 women and a man confronted me:bullies. They called me names ‘specky 4eyes, Blondie’. They said I couldn’t tie myshoelaces. 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 theend the 45 bus came along. They got onthe bus. I was left standing there alone.

Planning the WorkshopWe planned the workshop overseveral weeks. We decided that itwas for self-advocates only.

We advertised it by email and bygiving out flyers at the InclusionIreland Conference. 33 peoplecame to the workshop. But therewere over 100 people on a waitinglist. Bullying is a big problem.

We made a role play.We organised speakers to come tothe workshop: a parent, a supportworker, a self-advocate and amember of the Gardaí (who did notcome on the day!)

We organised coffee and lunches.We had music about bullyingthrough the day.Frontline Summer 2007

We looked for information about bullying but we found few resources that wecould 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.

What we did at the workshopWe started by getting to know eachother and what we wanted from theworkshop.

We talked about the rules for theday.

We watched a role play where aperson was bullied at a bus stop.

People from Santry Hall talked aboutbullying and how they tried to stop it.They showed us a DVD they had made.

We talked about different kinds ofbullying, like being hit or punched,being called names or having yourthings taken.

After a break we shared storiesabout bullying. Some people found thishard. On the next page are some of thestories people told.

Some stories of bullyingI was bullied on thebus. The driver yelledat me and called menames because I hada 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 schoolI was called names: ‘Specky four-eyes’,and the staff did nothing.

People called me names on the bus.They shouted ‘Get off the bus’.

I was at school. I was hit, the staffdid nothing.

I was bullied in my house. Theythrew cups at me. I told the peoplein charge and I moved to a newhouse.

I was bullied in school. One personcalled me names and spreadrumours. My friends turned againstme because of one person. I toldthe teacher and it stopped.

After lunch we heard from a panel ofspeakers about what we could do aboutbullying.

We heard that it was important tohave someone on the staff to whomyou could talk in private about bullying.

We heard that sometimes parentsfeel bullied by services, and sometimesby their children.

We heard that it was important tospeak up for ourselves.

Then we talked in groups about whatwe thought should happen to stopbullying.At the end of the workshop, HelenDonnelly read her poem and twopeople from Santry Hall sang their anti-bullying song.


What we thought shouldhappen about bullying

� Anti-bullying should be in theconstitution.

� The bully has the power, but we havethe power to stop it.

� Speak up.

� Get help from staff (whoever is incharge).

� 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 todeal with bullying.

Group work at the stop-bullying workshop

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People’s pages


What should we do next?We met and talked about theworkshop. People had filled inevaluation forms and they told us thatthe workshop was very useful.

We talked about how we felt aboutthe workshop: what we did well andwhat could have been better. Some ofthe comments from the Anti-bullyingGroup are below.

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

It was great that people got achance to say their bit.

A pity about the Garda who didn’tcome.

It was my first time at a workshopand I thought it was brilliant

We are planning to do moreworkshops in the future.

We would like to talk to schoolgroups about bullying.

We want to talk with the Gardaíabout what they can do aboutbullying.

We want to have complaint cards inthe buses.

We are writing to Dublin Bus to talkwith them about how bullying mightbe stopped on the buses.

We want more people to join theAnti-bullying Group.

We need money to help us to takethis further.

What the Anti BullyingWorking Group saidabout the workshop:

Help if you are bulliedHere are some people ororganisations that might be able tohelp if you are being bullied.

Inclusion Ireland, tel: (01) 8859891

Comhairle/Citizens InformationBoard, tel: (01) 6059000

Citizens Information Centre,1890-777121

Reading about bullyingEarl, M. 1999. Stop it: Bullying andharassment of people withlearning disabilities. Glasgow:Enable Scotland.

Heddell, F. 2000. Open your mind,not your mouth. Glasgow: EnableScotland.

Heddell, F. 1999. Living in fear.London: Mencap.

Inclusion Ireland. 2005. My voice, mychoice. 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

People’s pages

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 [email protected]

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Services

Home again at Tigh an Oileáin

Inrural Ireland,disability servicesare,bynecessity,often locatedataconsiderabledistancefromtheir serviceusers’homecommunities. InCountyKerry, forexample, serviceshavedevelopedprimarily inKillarney

(StMaryof theAngels,Beaufort, andKerryParentsandFriends)and inTralee (St JohnofGodBrothers). Toavoidunbearably longroadcommutes,five-or seven-day residenceshavebeendevelopedalongsidecentraldayservices. Itworkswell,but—wherepossible,wouldn’t itbepreferable tobringpeoplebacktotheirowncommunity, tomatureamong ‘theirownpeople’?Afanciful,unrealistic idea?TighanOileáinonValentia Island isanimpressiveexampleofhow it can be made to happen.

The first issue of Frontline, in the spring of 1989, featured aninterview with Mick and Rosaleen O’Connell—arguably the best-known couple on Valentia Island—and their (then) 12-year-oldson Diarmuid. At the time, Diarmuid was a residential service-userat Beaufort, and later he joined the adult services of the KerryParents and Friends (KPFA) at Old Monastery, Killarney. Mick andRosaleen were always closely involved in supporting KPFA, andfor many years Rosaleen was a family-liaison worker, driving allover the county to visit families whose sons or daughters availed,or might later avail, of the services.

About 1998, the idea was hatched to establish a house onValentia Island for a number of KPFA service users who camefrom the island or surrounding area. Miracles don’t happenovernight—without effort or, indeed, the facilitation of angels—but Kerry seems to have an abundance of both. Along with theorganisational leadership of Tony Darmody and the KPFA, andthe indefatigable work on-the-ground of the local committeechaired by Donal O’Donoghue, Mick and Rosaleen startedfundraising and preparing the ground on Valentia Island (quiteliterally, because they were able to donate the site nearKnightstown).

Tigh an Oileáin opened its doors in mid-2003. Rosaleen hadtold me about the project, on its way to completion, but becauseI failed miracle-class myself, it took me more than four years toget to Valentia to visit ‘the lads’ in residence! It was on the wildand wet last day of June that my son Niall and I headed downthe Iveragh Peninsula along the water-sheeted roads toCahirciveen, and over the short ferry crossing to Knightstown.We came to a halt just up the road from the village—when Niallsaid: ‘That must be it, Mum, it’s all on one level and there’s aminibus in front.’ He was right, as ever, but I had expected to seea bungalow, and this was more Caisleán than Tigh!

So, let me tell you about Tigh an Oileáin, where a ‘quality oflife’ 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 sunroom/dining room (extension built during 2006) looking acrossValentia Harbour to Beginish Island. On the other side of thehouse is a large workroom, filled with computers, art materials,nature-study posters and individual workstations—and evidenceof projects done by the lads and their two friends (Geraldine andJohn James) who are day-users.

The two-acre grounds of Tigh an Oileáin contain a well and apower generator—sometimes necessary for their exposed


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

Above: Tigh an Oileáin

Services

Atlantic-island site. A ‘standard’ polytunnel stands next to aposher climate-controlled glasshouse and potting shed. There aretwo donkeys (Ulysses and Róisín) and Zig and Zag in the rabbithutch. Successors of their original fan-tail white doves (who wereeliminated by a hawk) now live in a lovely designed-for-safetydovecote.

The basic philosophy of Tigh an Oileáin is to create a locallifestyle for the residents, and this is evident in nearly everythingthey do. Their health is monitored by the local GP and districtnurse and, like their neighbours, they have access to the non-acute hospital on the island and Cahirciveen hospital across thebay. They can walk to the shops in Knightstown. They growflowers for the village’s Tidy Towns image, plant up baskets andboxes and provide their maintenance throughout the summer.They grow some of their own vegetables and supply plants forthe KPFA garden centre in Listowel. Each morning at precisely10.00, 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 officersat Valentia Observatory. There’sa full schedule of jobs to bedone inside and out, cleaningtheir own rooms (and theanimal and bird cages) andhelping to prepare meals. TheGreen Flag they’ve earned fortheir consistent efforts inrecycling hangs on the walloutside the workroom.

Centre manager Fran Flynn (unfortunately on holiday whenwe visited) leads six members of staff. Maureen, whose area islifeskills, literacy and science, showed me some of the aids sheuses with individual residents. Picture boards, PECS and Widgetshave eased the frustration of one lad who has very limitedspeech. The step-by-step approaches of TEACCH help another ladto organise his chores and make complex choices. Mike heads upthe gardening and farming tasks and Julia leads their art andcrafts projects—but everybody pitches in to prepare their floatfor the Cahirciveen St Patrick’s Day parade. One year the floatwas focussed on sea creatures, and this year it featured a hugebutterfly, in line with their current nature study of nativebutterflies and moths. The lads also enjoy weeklydrumming/percussion sessions with Karolien. Mary, Christine andEileen are the other ‘mentors’ (Rosaleen’s apt term for the staffmembers).

When we were there, the lads looked like multiple MedallionMen—they had just returned from the Munster Special Olympicsgames in Cork. Locally they enjoy visiting the gym and goingriding, and they have hosted joint arts and crafts sessions withlocal school children. Not quite so local—they visited Rome forfive days in October 2006! Diarmuid and Kevin have each been toa match at their favourite English football ground (fierce rivalrybetween Arsenal and Liverpool, there) My son and I, morepatriotic Eircom League fans, grumbled at their foreignallegiances, but maybe County Kerry has to concentrate on someother kind of football. (The lads have been up to Croke Park onceor twice, and their ‘local team’ won the Munster Final the dayafter our visit.)

The lads at Tigh an Oileáin are well used to showing peoplearound their demesne—they greeted the Bishop of Kerry, Bishop

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

Mary de Paor

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Top: Diarmuid and Alan withUlysses and Róisín

Left: Lunchtime for Zig and Zag

Below: Patrick checking thewater gauge

Below right: Five Kerrymen inRome


The Streetwise project was initiated by CarmonaServices in response to a need for training andeducation in the role of law enforcement in modern

Ireland, for people with very basic literacy. The developmentof the training programme was influenced by a number oftopical issues, such as people with intellectual disabilities orthose with little or no functional literacy now using theircommunities in a more meaningful way through living fullerand more independent lives. Greater access to employmentand education has increased the number of situations wherethey may witness, or commit, crimes. It is also vital thatvulnerable people feel safe and know how to effectivelycommunicate with the emergency services should the needarise.

Irish people have become more affluent in recent timesand with this affluence there has also been increasedalcohol and substance abuse at all levels in society. Thesechanges have highlighted the need to offer opportunitiesfor learning about the hazards, responsibilities and legalrequirements for people who might not have the capacityto learn about the laws pertaining to these issues in moretraditional formats.

The Streetwise training course provides learners witheducation about these matters through methodology thatcan be easily assimilated by the learner regardless of theirlack of reading skills. The delivery of the training by amember of the Gardaí ensures greater communication flowbetween the learner and the law enforcer and assists inbreaking down cultural barriers that may exist betweenthem and some marginalised groups

In February 2007 a poll conducted by Ipsos MORI onbehalf of the Disability Rights Commission (DRC) in Britain

revealed that a third of adults (32%) with a disability orlong-term health condition did not feel safe in theirlocality. A quarter (24%) mentioned that they haddifficulty using police services in their local area.Correspondingly, just over a third of women with adisability or long-term health condition (35%) did not feelsafe from harm in their local area. (This figure rose toalmost half of the adults (44%) with a mental problem.)Although this research reflects the situation in Britain, itmay be assumed that figures in Ireland would bear similarparallels. A survey commissioned here in 1999 by theDepartment of Justice, Equality and Law Reform foundthat 28.8% of prisoners scored below an IQ level of 70.This indicates a significant level of borderline intellectualdisability among the prison population.

Other relevant research undertaken by LaurenceTaggart of the University of Ulster in 2004, examiningsubstance misuse, found that people with intellectualdisabilities now have increased opportunities to engage inusing alcohol and other substances with both theirdisabled and non-disabled peers. This again is due togreater integration, finances and education.Consequently, as a feature of engaging in similar lifestylesas their non-disabled counterparts, this population may beequally exposed to similar stressors of living in amodernised culture, thereby leading them to use suchsubstances as a coping mechanism / stress reliever and as amethod of ‘fitting in’, ‘socialising’ and making new friendswith non-disabled peer groups.

It is the intention of the Streetwise programme to offera greater understanding to learners (with little or noliteracy) about crime awareness and to enhance thepersonal safety of vulnerable individuals. Strongerrelationships between the Gardaí and marginalisedindividuals will develop, leading to crime preventionthrough awareness and education. It is also hoped thatthis training will encourage individuals to access furthereducation and literacy training through these links withcommunity education in their local area.

The key to the innovative aspect of the trainingprogramme lies in the fact that it is delivered by amember of the Gardaí (with additional support fromservice-provider staff) in a community location. This typeof training to a focused group has not been provided inthe past and it has proved extremely valuable as a meansof breaking down barriers between the Gardaí andmembers of the local community. It has enabled membersof the Gardaí to learn to communicate more effectivelywith participants and to develop positive relationshipswith them. The Gardaí can also call upon the support andexpertise of the service providers as needed.

Innovation

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


The course has provided a vehicle for non-readers to voicetheir issues and concerns to the Gardaí and has encouragedthem to exercise their rights vis-à-vis law enforcement. It showsthe very real and practical application of community education.The project has encouraged participants to address security andlaw enforcement issues in their community through variousmeans:

� The use of community learning spaces (such as LocalEmployment Services (LES), Vocational EducationCommittee (VEC) rooms and Further Education Colleges)has made them more familiar to the learners and openedup the possibilities for them to continue their learning inthese community venues.

� The inclusion of the interactive DVD within the trainingprogramme utilises technology as a method of reachingthose learners who find using technology less intimidatingthan printed matter.

� Participation on this course has met the strong need—expressed by some of the participants—to have morecontrol in their lives and feel safer in their home andcommunity.

� The Gardaí have gained a greater understanding of theneeds and concerns of people with intellectual disabilities.

The former Tánaiste and Minister for Justice, Equality and LawReform, Michael McDowell, launched the Streetwise trainingpack in June 2006 and Garda Chief Superintendent(Community Relations) Pat Cregg fully endorsed the trainingpack and agreed to issue a directive to all garda stationsaround the country to support the training course.

Although the programme was designed and developed byan intellectual disability service provider, this is not evident inthe course descriptor. It is hoped that other groups withliteracy issues—adult literacy groups, early school leavers,

Innovation

Traveller groups, the prison service, etc—will also make use ofthis resource.

Interest in the Streetwise programme was further enhancedwhen the project was shortlisted for an Adults ContinuingEducation (ACE) Award in the ‘Expanding CommunityParticipation’ category, which was coordinated by the NationalAdult Literacy Agency (NALA) in December 2006. CarmonaServices, in conjunction with Sergeant Angelene Conefry, wereinvited to present an outline of the Streetwise Programme todelegates at the AGM of Inclusion Ireland in April 2007. Inawarding accreditation to Carmona Services in April 2007, TheCouncil for Quality and Leadership (CQL) endorsed theStreetwise programme as one of the strengths of theorganisation.

By mid-2007 approx 33 intellectual disability services aredelivering the training in different community venues aroundthe country and additional enquiries have been received fromseveral other services. Comments from the participatingorganisations include: ‘Of great benefit! Useful in conjunctionwith the Charter of Rights—Right to be safe!’, ‘Useful to use forFETAC Level 2, Personal Safety’, ‘An excellent programme’, ‘Verybeneficial—our service users had very little awareness of whatconstitutes a crime, drugs etc.’

Some service providers have encountered difficulty inaccessing their community Gardaí for the delivery of thetraining. We are confident that the Chief Superintendent ofCommunity Relations will be able to expedite this issue;meanwhile in the majority of cases there has been no delay, andwe hope that more Garda stations will support the initiative asit 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 CarmonaServices, Glenageary, Co. Dublin ([email protected]).

Audrey Carroll, Project CoordinatorHilary Keppel, Project Developer

Sergeant Angelene Conefry, Garda Liaison

It is the intention of the Streetwise programme to offer a greaterunderstanding 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 Johnof God) and Michael McDowell (then Minister for Justice) at the launch ofthe programme.

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

13

14

Research

IntroductionIt is important to review the developments of intellectualdisability nursing in order to understand the changes thathave led to current practice within the profession today.Traditionally, the care of people with intellectual disabilityrevolved around long-stay hospital care, but the negativeeffects of institutional living eventually led to social andpolitical pressures to move towards community care. Aspoliticians, professionals and the general public debated theways in which people with intellectual disability should becared for, their opinions influenced both service provisionand delivery. Historically people with intellectual disabilitywere negatively viewed, with the use of terminology that isnow considered derogatory in the English language. Thelabelling of people with intellectual disability has adapted inline with changing care philosophies, service provision,public perceptions and, more importantly, the views ofpeople with intellectual disability themselves.

On the establishment of the Irish state in 1922, there wasonly one centre dealing specificallywith intellectual disability, whichmeant that such persons werecatered for, to a large extent, inmental hospitals and in countyhomes (which succeeded theinstitutions provided under the PoorLaw 1834). Today, however, there is awide range of services for personswith intellectual disability and asubstantial move from institutionalto community-based care has takenplace. The aim of this shift has beento see people in the mainstream oflife: ‘living in ordinary houses, inordinary streets, with the same rangeof choices as any citizen and mixingas equals with others’ (King’s Fund Centre 1980 p.5).

The change in service provision has also meant a changein the role of the intellectual disability nurse—fromproviding little more than custodial care, to enabling peoplewith intellectual disability to live as independently aspossible—in an environment that maintains the privacy anddignity of each individual and provides support to enablethem to reach their maximum potential in all areas of theirlife (Department of Health and Children. 1997b). Thischange in care philosophy and practice was not onlyinfluenced by government reports, but also by the field ofpsychology. The publication of Wolfensberger’s theories onnormalisation (1982, 1972) and social role valorisation (2000,1994, 1985), which also supported community living, had avast impact on contemporary attitudes and practices. Inaddition, these theories describe care philosophies thatshould underpin care delivery and promote valuing peoplewith intellectual disability and thereby facilitating their

value as individuals within society and the community in whichthey live.

Background of the studyFamily perceptions of persons with an intellectual disabilitywho leave institutional care to live in community programmesare often included as a component of a study, rather thanbeing considered in themselves. The present study focused, inthe Irish context, on the views of families of persons with anintellectual disability who left a long-stay psychiatric institutionto live in a nearby intellectual disability community-basedprogramme. The clients involved had initially beeninappropriately placed, and they were transferred as a resultof the recognition of that fact, and because of currentgovernment policy. The 36 clients involved in the move wereall of severe to profound disability, ranging in age from 34–74and had resided in the long-stay institution for a period of16–46 years.

MethodologyThe research was conducted with tenparticipants who met the criteria forthe study. In order to allow for abalanced view of the move and toreflect the true perceptions of families,all the participants who were selectedhad two years of contact prior to theclient’s transfer of residence andcontinued contact after the move hadoccurred. Six interviews wereconducted with individual familymembers and two were conductedwith two members of a family. Theparticipants comprised six sisters, onebrother, one niece, one brother-in-lawand one mother. The ten participants

were interviewed in a venue of their choice, for a periodlasting one-hour at a minimum. A phenomenological approachbased on Husserl was chosen and data was collected throughinterviews, which were transcribed and analysed usingColaizzi’s (1978) procedural steps.

FindingsOverall, the participants viewed the change in service andservice environment as being a positive transition. Initiallyparticipants had been made aware of the move, but some didcomment on the lack of information at times. For families, theclient mix and compatibility with co-residents (Browning andJones 2002) were a general concern in the planning of themove. Families identified environmental changes (such as clientindependence, individual rooms, increased privacy andpersonal belongings) as being evident (Leff 1993). They alsofelt the clients were in an environment that was relaxed andwelcoming, with pleasant surroundings (Donnelly et al. 1994).

Moving from a long-stay institution to a community-based residential programme for persons withintellectual disability: The views of families

Participants expressed asense of gratitude for the

service their familymember now receives,but there was little

awareness that this waswithin their right to equalparticipation in society...



Research

Participants expressed a sense of gratitude for the servicetheir family member now receives, but there was littleawareness that this was within their right to equalparticipation in society, as declared internationally (UnitedNations Human Rights 1987) or asserted in Ireland(Department of Health and Children 2001; Department ofHealth 1994). Accessibility and openness had increased forfamilies and communication between family and staffincreased. Families were given access to details of care plansand personal accounts (as reinforced by the Freedom ofInformation Act 1997). The expression of ownership, inasmuchas clients have their own room and personal belonging, wasdeemed important, but families still felt they were avulnerable group in relation to the security of serviceprovision and were concerned that services might not alwaysbe available to them.

Good communication and family togetherness wereidentified as being important; this was encapsulated by afeeling that staff members were now seen as part of thefamily. The participants also acknowledged that the staffseemed to see the client as part of their family as well. Allfamilies especially appreciated social gatherings and eventsthat provided more opportunities to meet, as this allowedthem to bring their own children and to further developfamily ties to the next generation. Participants noted thatstaff members often attend these events even if they are noton duty at the time, and that they might bring along theirown children. These factors helped to develop a greater senseof a family environment. The clients have developed bettercommunication networks with their own family, for exampleby linking more frequently with greeting cards, photos ofholidays, etc

The study participants also highlighted the issue of stigma.They felt that the actual institutional environment, and itsphysical and ecological aspects, had exacerbated stigma,which had now been considerably lessened. They were alsoconscious of social stigma associated with the institution,which had been viewed by some people in the area as a ‘madhouse’. As Pert et al. (1999) highlighted, situational factorsmay lead to heightened awareness of stigma.

Participants perceived that there has been ‘a new breed’ ofnurses trained in recent times, and in their attitudes to care.There was an acknowledgement of the respect and dignityclients receive and the overall approach to care. Consistencyof staff, and their familiarity with their family member, washighlighted as important to families. This was seen not only inthe care of the client, but also in the creation of the relaxedatmosphere for everyone.

Overall the care received by the clients was seen asequitable and suited to the needs of the client. Families werenow treated as important people too, included in caredelivery and planning, as well as being involved in such areasas developing mission statements for the houses. The teamapproach to care delivery and the good communicationsystem behind this was seen to be the key. Teamwork was alsovery evident in relation to the annual plans which theparticipants identified, where all people from the family, staffand multidisciplinary team were involved.

ConclusionOverall the findings of the study are positive and sit well withthe principles of normalisation and social role valorisation.

Among the findings, communication and the inclusion offamilies in the planning and delivery of care were seen asessential. Also, the general philosophy of care based onrespect for the individuality of each client (as evidenced inindividual care plans and mission statements) was importantto families.

Owen Doody,Lecturer,

University of Limerick,Department of Nursing and Midwifery.

[email protected]

References:Browning, M. and Jones, R. 2002 Using staff ratings to

measure clients compatibility, Journal of LearningDisability 6 (1), 35-46.

Colaizzi, P. F. 1978 Psychological research as thephenomenologist views it, In Valle, R. and King, M. (Eds),Existential phenomenologyical alternatives forpsychology, 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 Groupon the Role of the Mental Handicap Nurse, Unpublished.

Department of Health 1994 Shaping a healthier future: Astrategy for effective healthcare in the 1900’s, Dublin:Stationery Office.

Department of Health and Children 2001a Quality andFairness: 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. 1994Opening doors: An evaluation of community care forpeople discharged from psychiatric and mental handicaphospitals, London: HMSO.

King’s Fund Centre 1980 An ordinary life: Comprehensivelocally-based residential services for mentally retardedadults, London: King’s Fund Centre.

Leff, J. 1993 The TAPS project: Evaluating communityplacement of long-stay psychiatric patients, BritishJournal of Psychiatry 162 (19), 36-39.

Pert, C., Jahoda, A. and Squire, L. 1999 Attributes of intentand role taking: Cognitive factors as mediators ofaggression 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 rolevalorisation, Mental Retardation, 38, 105-123.

Wolfenserger, W. 1994 An analysis of the client role from asocial role valorisation perspective, The InternationalSocial Role Valorization Journal 1 (1), 3-8.

Wolfensberger, W. 1985 Social role valorization: A newinsight, and a new term for normalisation, AustralianAssociation for the Mentally Retarded Journal 9 (1), 4-11.

Wolfensberger, W. 1982 Social role valorization: A proposednew term for the principles of normalization, MentalRetardation 21, 234-239.

Wolfensberger, W. 1972 The principles of normalisation inhuman services, Toronto: National Institute on MentalRetardation.

Gallery

St John of GodNational Art Exhibition

EmbracingHospitality.

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

Artisans, Carmona Services

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North

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Services

The St John of God Brothers Services organised their second National ArtExhibition, which was held this year in conjunction with the ‘Chapter’ ofthe Order during St John of God Week in early June 2007. Theexhibition artwork was displayed in the Stillorgan Park Hotel, 5-7 June.Later the same month, Dún Laoghaire Town Hall hosted a prestigiousexhibition 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, thisGallery reproduces a small selection of the works from the National Art Exhibition.

17

Embracingofculturesthroughfriendship.

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Shelter of the Storm.Claire Keegan,

STEP Enterprises

Still Life. Fiona O’Rourke,Kildare Services

Lazy Day. David McEvoy, Menni Services

SunnyDays.

Joan

neO’M

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Two Lakes. Charlie Campbell, Kildare Services

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

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18

Doing disability research:equal lives for equal people

FEATURE: Advocacy

Whilemanymilestones towards supportinganordinary life forintellectuallydisabledpeoplehavebeenmetandpassed, fullendorsementof the right toparticipateasequalmembersof

society formembersof thisgroup still requires analteration inwaysofthinkingabouthowtheyare tobe included in theeveryday lifeof theirlocal communities. TheNational Institute for IntellectualDisability, TrinityCollege,hasbeenawarded funding fromtheEuropeanCommission’sMarieCurieTransferofKnowledgeProgrammefor thedevelopmentandimplementationofa four-part researchproject. Thisproject 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 intellectualdisability through education, research and advocacy.

The Transfer of Knowledge Programme (TOK) will provideinformation in relation to two broad questions: what is lifecurrently like for adults with intellectually disability and familymembers in Ireland, and what would members of these twogroups like to see happening in their lives in the future? Anumber of people working in the research and service sectors inIreland have already explored aspects of these questions. Inrelation to people with intellectual disability, it has beensuggested that members of this group appreciate the supportthey receive to engage in social and community activities andthat they find these activities personally satisfying (Griffiths2002). However, many continue to have unfulfilled desires formore economic, social and physical independence (Gormley2003). Some research has also been undertaken in relation tofamily members. These findings have provided information aboutfamilies’ views of the quality of residential support (Walsh et al.2001), carers’ access to services (McConkey 2003), use of respitecare by Irish families (MacDonald, Fitzsimons and Walsh 2006),and levels of time, energy and resources expended by families tosecure mainstream educational placements for their children(Shevlin, Walsh and McNeela 2005). The NIID project aims tobuild on these findings. In addition, an innovative feature of thisproject is that a series of experienced researchers from otheraffiliated EU states will join the NIID team in transferring theirknowledge, skill and competences to all aspects of theprogramme.

Three of the TOK projects are currently being developedunder the guidance of an advisory group of people withintellectual disability, family members, support service agencies,public agencies involved in policy, advocacy, and research andresearchers working in the intellectual disability field. Theguidance of this group will be central to the successful outcomeof the research process, as these projects present a number ofchallenges. The requirements of people with intellectualdisability do not always fit into survey instruments for gatheringand processing information, thus how to include people withsevere disabilities within a representative national survey samplepresents an ongoing challenge (Phelan 2005). Yet theindependent voice of all people with intellectual disability isneeded to inform future development of policy documents andsupport structures. Families have previously provided surveyresponses based solely on services and support issues. This surveywill include these aspects; however, it is anticipated that the

information gathered will also include the broaderfamily/community interface in which services, supports, needs andwants are placed.

As part of the NIID’s commitment to inclusive processes, the firststage of two of the projects will involve a qualitative dimension,bringing together targeted regional focus groups for people withintellectual disability and family members, respectively, to talk abouttheir everyday experiences and future aspirations. This stage alsofollows international trends in emancipatory research whichacknowledges that any research undertaken with groups whoexperience areas of social need should be fully consultative andinclusive of the voices of those concerned. Emergent themes fromthese discussions will contribute to the second stage, consisting ofsurveying a nationally representative sample of the two groupsinvolved. Further details of the process will be made available as theconsultative process is fully implemented. The life-story project sitsalongside these two surveys, where initially in-depth interviews witholder people with intellectual disability will be undertaken. Thisprocess 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 willprovide detailed insight into the present and future requirements ofmembers of these two groups. It is hoped that this insight willenable policy makers and service providers to continue to developcreative strategies to bridge the gap between current serviceprovision, so to make the future aspirations of people withintellectual 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.

ReferencesGormley, 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 ofLearning 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 learningdifficulties. 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 copiesstrategies 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 fromparticipants with a learning disability: The challenges faced by aresearcher. 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 ofthe quality of residential supports. Journal of Applied Research inIntellectual Disabilities 14, 292-309.


Further InformationNational Survey of People with Intellectual Disability [email protected] Survey of Family Members [email protected] Archive of Life-Stories [email protected] about Research Resource Tools [email protected]


New citizen advocacy servicein Cheshire IrelandMission—Supporting people to speak up, stand together and make change happen themselves

Dublin area.The Citizen Advocacy Service provides well-oriented, trained

volunteer advocates to support people living in these services tospeak up, express their desires, choices, needs and to exercise theirrights. In order to assist us to achieve our vision we wish to recruitinnovative and proactive people who will relish the opportunity todevelop a one-to-one relationship with a person with a disabilityliving in Dublin. We wish to create opportunities for people with adisability to have valued social roles in their communities and tohave the chance to form real friendships. Therefore we arelooking for people who care about and value other people in thecommunity, who believe that it is wrong that people who have adisability 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 toimproving someone’s life. The time commitment involved will varyfrom 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 andpioneering advocacy initiative, or if you are interested inbecoming a citizen advocate, please contact:

Charlotte KnightCitizen Advocacy Coordinator

Tel: (01) 2974138, Mobile: 087-2700253Email: [email protected]

Advocacy is at its core an empowering process which puts the individualat the heart of the decision-making process

FEATURE: Advocacy

A seat at the table‘A Seat at the table’ project (funded by theDepartment of Justice, Equality and Law Reform)has established the first service-user forum in boththe North East and South East of the country, forpeople who facing the challenges of intellectualdisability.

‘Midway’ in Meath has teamed up with ‘SOSKilkenny’ to bring together the various regionalorganisations that provide services for people withan intellectual disability. The project, born out ofthe HSE desire to have better customer service, isfounded on the principles of ‘advocacy’ and‘active citizenship’. It has brought togetheradvocates from Midway, Order of Malta, SteadfastHouse, Cáirde Activation Centre, Drumlin House,St John of God Services and Rehabcare.

All thirteen advocates involved in the projecthave been elected to the parliament by theirpeers. Elections, based on proportionalrepresentation, took place last July in each of the

seven services. The parliament members havecompleted a ‘Certificate in Leadership’ course atDundalk Institute of Technology, the first studentsto do so. Their graduation in September wasattended by President Mary McAleese.

Before the General Election, the parliamenthosted their second regional forum meeting, onthe topic of ‘voter education’ and ‘activecitizenship’. The idea was to raise awareness,both among those with an intellectual disabilityand those campaigning for election, of thepower that this section of society have with theirvote. This included a presentation from the‘Vincentian Partnership for Justice’ and a numberof TDs and councillors who took part in aquestion-and-answer session.

On 16 May 2007, the parliament made apresentation at the national ‘Just Ask’ conferencein Kilkenny, where they addressed the differencebetween work and employment.

Citizenadvocacy iswhenonepersonmakesa long-termcommitmenttotherightsofanotherwhofindshim/herselfdevalued,disadvantaged,or sociallyexcluded.Citizenadvocates comefromall

walksof life,areofall agesandbringwiththemauniquerangeof lifeexperiences, skills andexpertise—theydonot replacepaidprofessionals.Theyareordinarypeoplewhohavemadeavoluntarycommitment tomakeadifference inoneperson’s life.

Citizen advocates play a vital role in facilitating access for theindividual to a whole range of information, representation, andnatural supports. This person-centred approach helps toempower 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 individualCheshire Ireland provides a range of supported accommodationservices to people with physical disabilities and is committed toproviding quality, person-centred services. With the continuedsupport of the Citizens Information Board, the Citizen AdvocacyService is now recruiting, training and matching citizen advocateswith people living in Cheshire Ireland residential services in the


FEATURE: Advocacy

‘Our Voice’ advocacy service, Sligo

Over the past few years, Sligo has been veryinnovative and progressive in the area of advocacy.Sligo Institute of Technology now offers a formal

accreditation in advocacy, through a Higher Certificate inHumanities in Advocacy Studies. It is a two-year distance-learning programme offering subjects that are practicaland applicable to advocacy. I completed the course in June2006, and I found the combination of subject matter andsharing the experiences of other students very valuable.Following completion of the course, I accepted the positionof Advocacy Development Officer for the ‘Our Voice’advocacy service.

I am also pleased to say that since the new governmenttook office in June our local TD, Dr Jim Devins, now isMinister of State for disability and mental health issues.We intend that “Our Voice” Advocacy Service will workclosely with him in the future.

Background to the serviceIn 2005 the Learning Disability Services in Sligo wereapproached by a group of people with a learning difficultywho expressed a wish to become more empowered inmaking their own decisions, as they were moving fromresidential living to living independently. It wasacknowledged that they required additional skills to helpthem be effective self-advocates. The Sligo Institute ofTechnology was contacted and invited to assist in thedevelopment of a self-advocacy training course. Anappropriate FETAC-accredited modular evening course wasdeveloped, and it was successfully completed by fourteenparticipants over a period of twelve weeks.

This was the first time, outside Dublin, that a FETAC-approved self-advocacy course for people with a learning

difficulty had been offered through a third-level institute.The group who participated in the course now have agreat sense of personal achievement and a true sense ofpride that they were in mainstream college.

As a direct result of this endeavour, an enthusiasticSligo Interagency Disability Group was established inMarch 2005. The group consists of both statutory andvoluntary agencies: HSE West Learning Disability Service,North West Parents and Friends Association, Cregg HouseServices, National Learning Network Sligo, and RehabCare Sligo. chaired by John Truelove, Project Officer, HSELearning Disability Service.

A working relationship developed between the SligoInteragency Disability Group, Sligo Citizens InformationService and the Citizens Information Board (thenComhairle) as mainstream providers of best practice in thearea of advocacy. The outcome of the initiative is thatSligo Interagency Disability group was successful insecuring funding from Comhairle for an initial two-yearperiod to establish an Independent Advocacy Service inSligo for clients of the above services and their families.This is the first time in the North West that an advocacyservice for people with a learning difficulty has beenestablished fully independently from service providers andmanaged through the Citizens Information Service. Whileit is an across-disability advocacy service, a largeproportion of the clients do have a learning difficulty.

I took up the position of Advocacy DevelopmentOfficer in June 2006. During an induction period of threemonths, I met with the clients and staff of each of thefive services. During this time I worked to develop thepolicies and procedures required in order to becomeoperational, and which would establish ‘Our Voice’ as anexample of best practice in advocacy. The “Our Voice”advocacy service was formally launched in November 2006in Sligo with 300 people in attendance. An informationleaflet was made available to publicise the service and‘Our Voice’ achieved the accolade of winning theprestigious 2006 HSE Derek Dockery Award forInnovation.

The ‘Our Voice’ service is mainstreamed through theCitizen Information Service in Sligo. I work from theCitizens Information Office in Lower John Street. Thelandmark location of the office has made it very accessiblefor my clients. Our Voice is structurally independent fromservice-provider agencies, which reduces any possibleconflict of interest issues and gives my clients the choiceto access ‘Our Voice’ advocacy independently of theirservice. I am also ideally placed to report inadequate andinappropriate supports and services through social policychannels in the Citizens Information office.

The Citizens Information office remains open until7.00pm on Tuesday evenings and this affords my clientsaccess 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 publictransport. Appointments are arranged to allow each clientthe time they need to be comfortable enough to talk


available and to act in their best interests. This is not todiscourage anyone from thinking ‘outside the box’, as manysolutions are to be found there!

I encourage my clients to determine the level and typeof involvement they want from me as their advocate.Advocacy is not about the advocate imposing their opinionson the client, but rather ensuring they have theinformation and time they need to reach a decision.

I find that negotiated resolutions work out best for allconcerned, but it is invaluable as an advocate to be in anindependent position when negotiating with serviceproviders on behalf of clients. When dealing with socialservice providers, it certainly doesn’t hurt to mention that Iam based in the local Citizen Information office, as the roleof this service is well respected nationally.

Plans for the future of ‘Our Voice’ advocacyserviceI currently work with five self-advocacy committees withinthe Sligo Interagency Disability Group. The committeesoffer service-users a forum to air their views about decisionstaken within services that impact on their lives. There arealso many issues and anomalies across social services thatconcern them, and the committees are becoming moreaware of their own role in influencing a change in society’sattitudes towards people with disabilities.

It is important that ongoing training and education areavailable and accessible to our clients, at a level they canparticipate in. I recently proposed that we form an across-agency self-advocacy committee and the group membersmet the idea with a lot of interest. Following on from thisthe self-advocates suggested that they would like to havean opportunity to return to education and developexpertise in specific areas that interest them. Theirsuggestions included, as you might expect, housing, health,relationships and employment. Some other interestingtopics were tabled, such as public speaking, human rights,and consumer rights. We are presently researching the typeof programme we need, and are considering the rolevolunteer mentors could play in ensuring the success of theprogramme.

I am pleased that the project funding has been extendedby the Citizens Information Board (CIB) until 2010. There isa 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.

about their concerns. It is important that they don’t feelrushed or under pressure when meeting with me.

I also visit each of the services once a week. These visitsare used both to support self-advocacy committees and tomeet individuals on a one-to-one basis. The clinicappointments are arranged through the self-advocacycommittees when a client is able to self-refer. Anappointment may also be made by a member ofstaff/family member on a client’s behalf if they are unableto self-refer to the service.

The regular time spent at each service has beeninvaluable in establishing the presence and availability of‘Our Voice’ advocacy at local level. It has helped todemystify ‘advocacy’. Now that I have been in theposition for twelve months, I no longer need to explainthe term, and the service offered, to as many people.

I have also established an identified liaison person ineach of the services. This has proved useful for any of myclients who may need to access the service outside ofclinic hours, but who may have speech and languagedifficulties. I also try to remain as flexible as possible andoften call to a client’s home to meet with them.

How we realise our vision of social inclusionI believe that people need knowledge and true choices ifthey are to be empowered; lack of knowledge causesfear, isolation and exclusion from participation in the lifeof our communities. It is the right of people withdisabilities to have the same life chances, opportunitiesand expectations as everyone else and to have theopportunity to engage in valued activities.

Myers (1995) stated that ‘Empowerment is a processwhich helps people gain, regain, or maintain personalpower over their lives with a sense that they caninfluence the people and organisations which affectthem.’

The role of ‘Our Voice’ advocacy is to ensure that thepeople who come to us are listened to when they tell uswhat they want.

I work in partnership with my clients—if they are able,I support them to self-advocate. If they have severelearning difficulties, I act as their representative. As theiradvocate I take action to secure their rights and interestsand try to obtain the services they need. My role is not tobe impartial, but to let the wishes of my client direct mywork.

I realise that advocacy must be undertaken in aresponsible manner and not offered as a ‘wish list’ toboost the popularity of the advocacy service. There areserious ethical issues around raising a person’sexpectations and not being able to deliver the outcomesthey dream of. Therefore, when working on my client’sadvocacy plan I strive to be honest about the real options

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

FEATURE: Advocacy


In2002theSouthEasternHealthBoardhadthe ideatoget thepeopleliving incountiesCarlow,Kilkenny,Tipperary (South),WaterfordandWexfordandwhoused intellectualdisability services tomeet.At first this

‘idea’was just to listentowhatpersons thoughtabout services.Encouragedbythehealthboardandmanagersofother centres, SOSKilkennyset toworktobringa ‘forum’ together.

At the start, ‘staff’ got the conversation going; and peopleshared their feelings about training, day and residential services.Everybody liked being asked about what they thought, andbeing listened to, and they wanted to get together more oftento 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

with help from someone that was ‘on their side’. People madetwo important suggestions: to have a conference to attractattention, and for a course to be designed to help them tobecome able leaders.

The Equals Conference took place in December 2003, inKilkenny, 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 wasencouraged to help train and set up a forum leadership. They gothelp from the health board, Comhairle and the DormantAccounts Fund to create a facilitator’s post to work with theforum. The work included holding elections, seeing what peoplefelt they needed to learn to be good leaders, and running acourse to meet that need.

Cabrini de Barra, in the Brothers of Charity Services, and JoeWolfe and Associates helped the steering committee with goodadvice. Elections were held in the centres around the southeast.Anyone who wanted to stand in the election could do so. Centreswith up to 50 elected one representative; centres with up to 100

Seasamhmodel of leadership and advocacy

elected two representatives, and centres with more than 100elected three representatives. At first, 23 were elected and, on14 April 2005, they came forward to hold the forum’s‘Parliament’. (That number has risen to 52 since then.) Theleaders of the new forum chose the name ‘Seasamh’, which isthe Irish word for ‘standing’, and they decided on a logo withtrees and hands.

Between April and July 2005, elected representatives, withthe 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, studentslearn about leadership and advocacy, teamwork, communicationskills, the history of disability in Ireland, standards of service,programmes and campaigns, and inclusiveness. Students on thecourse mix with students studying social care.

Since March 2006 SOS Kilkenny has worked to spread theadvocacy model created by Seasamh in the south-eastern region,to the north-eastern region where Midway Services (based inNavan) are partners in a project called A seat at the table. In2006, the Dundalk Institute of Technology granted accreditationto the Certificate in Leadership programme. This project isfunded by the Department of Justice Equality and Law Reformunder its Enhancing Disability Services Initiative. The fundingallows the work to get ‘seats’ where decisions are made thataffect the lives of people accessing intellectual disability services.A recent report shows that the Seasamh Model is transferable toother parts of the country.

Parliament members want to get on ‘boards’ of their services,and into local and regional committees; where they can act asreal representatives, no longer just accepting the decisions ofothers, but as free and equal citizens looking others in the eyeand contributing to discussions and decision making. Seasamhmembers aim to get places on the teams that check how goodservices are. Seasamh wants to help health professionals andcare managers to improve day-to-day health care.

Parliament members gave two plenary sessions in the first All-Ireland Self Advocacy conference (20–21 June 2006). They alsoheld parallel plenary sessions at the All-Ireland Self-AdvocacyConference hosted in the University of Ulster in NorthernIreland, and were commended for their respective contributionsby Dr Patricia O’Brien of the National Institute for IntellectualDisability, Trinity College Dublin.

Seasamh representatives also gave three presentations on 28

FEATURE: Advocacy

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

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


March 2006 during the Active Citizenship Awareness Day at theGandon Inn in Co. Laois, and again on 2 October 2006, at theConsultation Seminar hosted by the Taskforce on ActiveCitizenship in Tullamore, Co. Offaly. Mary Davis, the Taskforcechairperson, commended them for the quality and relevanceand foresight of their various contributions. Seasamh memberstook part in the HSE’s Transformation Programme on 29–30March 2007, in Kilkenny. And in May, the Parliament gaveteam-presentations at the Rights Seminar in Tullamore, Co.Offaly, and at the ‘Seat at the Table’ National Conference inKilkenny. Our open-space forums have continued during theyear, with a Seasamh Open Forum at the Talbot Hotel inWexford (30 August) and the presentation of a drama onadvocacy at Windmill Therapeutic Centre (also in Wexford).

Seasamh’s chairperson, Anita O’Connor (from the CarlowDelta Centre), says: ‘Being asked what we think “first” is reallyimportant and that’s why I think this way of doing things reallyworks. When you are asked first, it means that what we saycounts and that the things that are done and the way they aredone feels right.’ Derek Watson says: ‘I like talking in themeetings now, I think people are beginning to listen, we stillneed Tim to help us with stuff, but we do more and more ofthe talking now.’

‘Conversation’ best describes the facilitative style inSeasamh. It rejects spurious power or authoritarianinterventions and it purposefully avoids the temptation toimpose meaningless ‘rote’ learning, or to ‘interpret’participants’ contributions. Unobtrusive interventions arecatalytic and aimed to empower. The Seasamh ethos is basedon the social model of ‘helping’, not ‘interfering’. Supportingparticipation in Seasamh, its forum and the leadership course,has also given the participating organisations another way ofworking together. By giving one-to-one help, transport, andsharing their buildings, centres throughout the region haveshown our wider society how much we can achieve (and howthey can work together too!).

Parliament members are leaders; they draw public andofficial attention to the concerns they spot and they help to getthings done.

Anita O’Connor, Chairperson, SeasamhDerek Watson, Publicity Committee

Timothy O’Connell, Seasamh Coordinator

FEATURE: Advocacy

Timothy O’Connell,reporting on the

Seasamh project at theEuropean Association

of Service Providers forPersons with

Disabilities (EASPD) inVienna, May 2005.

The Irish Associationof Advocates

Everypersonhas theright tobe incontrolofhisorherownlifeand indecisionswhichaffect them.However, sometimes,whether throughfrailty,disability, financial circumstancesor socialattitudes, theymayfind

themselves inapositionwheretheirability toexercise choiceor to represent theirowninterests is limited. In thesecircumstancesadvocates canhelpensure thatanindividual’s views, rights, andentitlementsareheard, respectedandactedupon.

In the context of disability in Ireland, there have been quite a lotof developments in recent times in the area of advocacy. Forexample, a new personal advocacy service was recently givenlegislative status under the Citizens Information Act (2007). TheCitizens Information Board (CIB)—the national support agencyresponsible for supporting the provision of information, advice, andadvocacy on social services—has been supporting the development ofnew, community-based advocacy services for disabled people. So far,the CIB has funded over 30 advocacy projects throughout thecountry. Those seeking formal training in advocacy can pursue aqualification through the Institute of Technology, Sligo.

All of these new advocacy initiatives complement the informaladvocacy that has existed in Ireland for so long and supports theestablished advocacy that was already available to some disabledpeople from organisations such as the Irish Advocacy Network.

As the number of people working in the area of advocacyincreases and as it becomes more professionalised, those working inthe area have sought to come together and share experiences andoffer mutual support. As a result, a new organisation—the IrishAssociation of Advocates (IAA)—was established this year. The IAA isa peer-led organisation, which seeks to support and promote thework of advocates in Ireland. The IAA is committed to a leadershiprole in the ongoing development of advocacy services in Ireland andto 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 obtainservices they need. Advocates and advocacy services work inpartnership with the people they support and take their side.Advocacy promotes social inclusion, equality, and socialjustice. 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 formembership. The IAA has developed terms of reference and a codeof practice for its members. The IAA code of practice is a set ofguidelines for advocates aimed at providing clarity, support, andboundaries for their practice. The code offers a clear description ofwhat is and is not expected of an advocate in their day-to-day workwith 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,

[email protected] Tel: 01-2974127

Contact details for the IAA:Website: http://groups.google.ie/group/irishassociationofadvocatesEmail: [email protected]

23


FEATURE: Advocacy

Longford Advocay Partners inDisability provide new professionaladvocacy service for people withdisabilities in Co. Longford

Independent personal advocacyserviceIn 2006 the Independent Personal Advocacy Service wasdeveloped as part of an initiative to support the developmentof advocacy services in the community and voluntary sectors inIreland.

The project is run by Inclusion Ireland in partnership withtwo residential services that have agreed to act as pilot sitesfor the duration of the advocacy project until 2010.The twolocations are Moore Abbey, the Sisters of Charity of Jesus andMary Services in Monasterevin, Co. Kildare, and St Joseph’sIntellectual disability service in Portrane, Co. Dublin.

The project is funded by the Citizens Information Board andhas now been running successfully since the beginning of2006. Under the project Inclusion Ireland, who are the leadagency for the Independent Personal Advocacy Service,employs an advocate (Gerald Mac Cann) to act as a personaladvocate to the service users in the two locations. Thepersonal advocate enables service users with an intellectualdisability to identify their needs and facilitate choices; heensures that the service users’ wishes are heard and actedupon. The advocate works with persons with intellectualdisabilities to make things that they want happen or change.The personal advocate helps people with disabilities maketheir own choices and take more control of their lives.

What is Advocacy? Advocacy means to speak up forsomeone. Most of us at some time need someone to speak upfor us when we need support. This is particularly the case forpeople with a learning disability because they are at risk ofbeing ignored. Advocacy is about facilitating the person with adisability 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 casethe advocate will facilitate their needs and wishes throughother alternative methods of communication, or through aprocess of ‘non-instructed advocacy’, if the person has nocommunication at all.

For more information please contact Gerald Mac Cann,Advocacy Officer, at Inclusion Ireland. Tel: 01-8559891; [email protected].

STEP Enterprises — Carol’s storyLexi Houston, our Programme Manager, asked a group of mothers fromSTEP Enterprises to do a talk at the Inclusion Ireland conference inKilkenny on the 20 June. We were going to be in Kilkenny for our annualmother and toddler respite holiday, so I agreed. I felt very nervous as Ihaven’t spoken in front of such a large group before. I think peoplelearned 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 STEPEnterprises and the community nurse. I had visits every week from thefamily support worker and my keyworker in STEP Enterprises. The SocialSupport Department in STEP Enterprises helped me to find a parentingcourse 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 stillhave weekly visits from the family support worker. I feel I have built upthe confidence and skills to manage on my own, but I always knowsupports are there when I need them.

Carol O’Reilly,Dublin

This new project is managed by County Longford CitizensInformation Service and directed by Longford AdvocacyPartners in Disability (LAPD), a steering committee whichconsists of local organisations who deal with people withdisabilities in the county. The project is initially a two-yearpilot project, funded by the Citizens Information Board as partof initiative to fund community and voluntary groups toprovide professional advocacy services for people withdisabilities.

The project aims to provide a free, independent,confidential and one-to-one advocacy service for adults withdisabilities in Co. Longford. It is based at Longford Town’sCitizens Information Centre, upstairs in the Longford ShoppingCentre.

The target group for the project is adults with alldisabilities (physical, sensory, intellectual or mental health)who live in Co. Longford. On the basis of an understanding ofeach client’s needs, the advocate will advise and support themin making their own decisions/choices, to claim an entitlement,or take a course of action. Where appropriate, the advocatewill 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 cancontact them by telephone (043-41069) or email([email protected]).

Valerie Maguire,Disability Advocate


Opinion

The JerichoSyndrome

The reader will remember very well the problemfaced at Jericho. The leaders of the people, theexecutive and their management team, were in

the city under threat. But there was a large high wallaround them, and whilst they could peek fearfully overthe wall to see the threat, it really did not matter. Theyhad closed and barred the gates, and their minds, sothat no one could get in. They could return to managingthe City in their own way. Unfortunately, there were noChinese literates on the Team who might have pointedto the Chinese proverb ‘threats have opportunities’.

So, what could the leaders have done? What strategycould they have adopted?

They could negotiate with the people outside, whomthey perceived as a threat. But that might lead tochanges in the City that they felt would beuncomfortable; worst of all, the outsiders might want totake over and displace the well known and understoodnorms of management of the City.

They could leave their thick wall and go out andfight a battle—not a good idea because they did notknow enough about the people outside. Did they wantto impose their ideas, or simply facilitate changes in theprocess of management for the good of the City?

No, the best plan was to hunker down and hope thatthe outsiders would get fed up and go away. They alsothought it might be a good idea to throw sufficient dustin the air so that they could not see out, and better stillthose outside could not see in! They knew that therewere some very skilled craftsmen managers in the Citywho 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 isbest not to turn away! The outsiders might react in anunexpected way. After all, they had been marchinground and round the wall for days, suppose theythought up some unexpected scheme to get at the cityleaders, like blowing trumpets!

Is this story an attempt by some cult to re-interpretthe Bible account in which the people outside were theIsraelites and Joshua their Chief Executive? No, it simplyprovides a way of illustrating a mindset all too often

found in leaders. Where does this mindset come from? Itmay be that there are several contributors:� Our service is of high quality, clients and staff are happy,

we have assured funds (inputs) and well-understoodexpenditure (outputs). Engineers would say ‘if it’s notbroken, don’t fix it.’

� We know the future means change, but we have metevery 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 wellwritten piece appears in Frontline. One of those smartmanagement magazines might be more appropriate!

Just take a close look at the army marching around yourJericho. Notice that they are led by a big Drumm. They aremarching in six regiments, at the head of the army, behindDrumm, is a banner. Can you see what it says?‘TRANSFORMATION’. Each regiment seems to have its ownbanner, 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 bigsticks.

Listen to their speech, they use words that are strange tothe Jericho language: efficiency, transparent standards,accountability, optimal, cost effective, resource allocation.

This army sends shivers down the spine. Yet, if you lookinto their faces they seem good people who, although athreat, seem to want to bring benefits to the City and, mostof all, to the people cared for in the City. They want tochange systems that have existed for many years and maybeno longer work.

‘They are not going to go away, you know!’ So those ofus managing the ‘City’ of care services in Ireland had bettertake advice and see if we are suffering from ‘JerichoSyndrome’. If so, we need to get treatment quickly so wecan engage with this army—for all our benefit.

A.R. Giles

26

Health


Women’s health:An ecological approach

What three things are most important in your life? Mostpeople who respond to this question will name good health asfundamental to a life of quality. The expectation of longer life,especially in Europe, no doubt heightens the value placed onhealth. But, like the pursuit of many glittering prizes, gaininghealth is not a simple matter. An ecological approach suggeststhat good health depends not on luck, nor the individual’scharacteristics alone; rather, there are many interwoven strandsthat influence health: early experiences, family upbringing, thesocial environment, available health systems and the widerenvironment.

Gender, too, determines health; not only do men and womenincur different health risks, behaviours and outcomes, but thesocial, political, economic and global environments exert differentinfluences on men and women. Many citizens in the developingcountries—where most of the world’s people with disabilitieslive—cannot rely on peaceful stability, clean air and wholesomewater, and as a result their children’s lives are compromised fromthe start. Some girls grow to be women in cultures where theirgender devalues them all their lives, and the presence of disabilityis exacerbated by being poor, without a spouse, without incomeand with scant access to health care.

Health disparitiesMost of the evidence about health disparities for women withintellectual disabilities reflects patterns in the more developedcountries. Women in these countries face risks to their physicaland mental health that are common to all throughout thelifespan—childhood ailments, accidents, skin complaints, chronicconditions like pain or diabetes, hearing loss, traumatic eventssuch as falls and the onset of depression. Surprisingly, there havebeen few attempts to develop measures that reflect women’sexperiences of health, well-being, illness and disability(Eckermann 2000). We know much more about the distribution ofthe conditions reported than their impact on the lives ofindividual women and their families.

People with intellectual disabilities prize their own goodhealth: your health is your wealth, commented one woman in hersixties living in a group home in northern Europe (Walsh andLeRoy 2004). But they experience additional risks, as people withdisabilities in general are likely to incur secondary conditions, thatis, health conditions that are more likely to arise given thepresence of disability. People with intellectual disabilities havemore health problems than their peers. Evidence from moredeveloped 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 theNetherlands found that patients who had intellectual disabilitiesreported more than twice the number of health problems thantheir peers, matched for gender and age, on the same GPregister. Closer to home, health screening carried out by acommunity nursing service in Northern Ireland revealed the needfor further action in relation to cardiovascular status, sensorydeficits, mobility and aspects of sexual health among people withintellectual disabilities (Barr, et al.1999).

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

Health promotionIn health promotion, as in other domains, individual preferencesare paramount. For many women with intellectual disabilities,whether living with their families or in supported residences, thetools 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 andwhat resources—personal, instrumental, financial—are available.However achieved, experts agree that an ounce (or for metricallyadept women, 28.4 grams) of prevention is worth a harvest ofhealth benefits.

Two topics have immediate resonance for women’s health. Asharper focus on promoting good mental health is indicated. Onestudy found that Canadian women with intellectual disabilitiesreported higher levels of depression than men. Individuals withhigher depression scores were lonelier and had higher stress levelsthan individuals with lower scores (Lunsky 2003). Further studies inthis area will help to tease out the complex factors related towomen’s reports of depression and thus help to shape practicalinterventions promoting their mental health. In some quarters,older notions that intellectual disability is itself a form of mentalillness persist, with a result that women—and men—may sufferneedlessly without recourse to appropriate treatment specificallytargeting a mental health difficulty.

A second topic relates to many strands of women’s sexual andreproductive health: management of menstruation, intimacy andrelationships; advice on contraception; and information about themenopause. A recent study in the UK concluded that women withintellectual disabilities are at least as likely to incur problems withmenstruation as other women. However, it was evident that thewomen would benefit from information, help with management—especially those women who had male carers—and support indefining the very problems they experienced so they mightdetermine how to construe and respond appropriately to problems.

Evidence has emerged about the influence of the person’senvironment on health. A study of risk factors for health of peopleliving in different residential settings in the UK found a highprevalence of obesity among women (Robertson, et al. 2000), forexample. Individuals living in larger residential campus settingsreported lower levels of physical activity. These authors argued thatincreasing levels of moderate or vigorous physical activity amongpeople with intellectual disabilities would be the single mosteffective way of improving their health. Health promotionstrategies address lifestyle changes for all—more physical exercise,better nutrition and satisfying social supports. Generic strategiesmust be carefully honed to meet the particular needs of womenwith intellectual disabilities at different stages of the life course,and in different living environments.

Health

27

Health screeningHealth screening is important in preventing disease andpromoting good health. For example, breast cancer is one of thecommonest cancers to affect women. Investigators in Australiaexamined patterns of participation in breast-screening and foundthat failure to use screening services was highest in women whowere unmarried, and was positively associated with severity ofintellectual disability, presence of physical disabilities, and urbanresidence. These authors (Sullivan et al. 2003) commented thatwhile women with intellectual disabilities may be at lowered riskof breast cancer than their peers, efforts must be made to ensurethat they have regular access to screening programmes,particularly those in the group aged 50-69 years. Elsewhere, tworecommendations were that primary health care professionalsshould endeavour to recognise health promotion opportunitiesamong older women with intellectual disabilities, and thatsupport services for women living in community group homescould be provided with better training and resources to improvebreast cancer screening in this vulnerable group (Davies and Duff2001).

When women seek health care, access hinges on adequateinformation for them, their families and carers. Healthprofessionals are typically responsible for information aboutcritical or long-term health care. It is widely recommended thattraining programmes for professionals should target competencein this area. In practical terms, GPs, nurses, therapists andcareworkers may have to make allowance for the longerconsultation time involved (Grover 2002), and making equipmentaccessible to people with disabilities.

Health information: European contextThe European Union has responsibility for public health policy atCommunity level, yet citizens with intellectual disabilities (anestimated 4.5 million persons) are invisible in public healthinitiatives. The Pomona project (www.pomonaproject.org),funded by the European Communities DG-Public Health, takes itsname from the Roman goddess of fruitfulness. From 2002–2004,partners developed a set of 18 evidence-based health indicatorsfor people with intellectual disabilities, grouped under fourcategories: demographic information, health status, healthdeterminants and health systems. First steps were to reviewscientific evidence and consult with self-advocates, familymembers and health professionals to develop indicators aboutaspects of the health status, health determinants and healthsystems relevant to women and men with intellectual disabilities.Currently, the Pomona-2 project (2005-2008) involves partnersfrom 14 countries of Europe. The list of indicators is at the coreof a detailed survey instrument, now translated into 13languages, including Slovenian and Lithuanian. The pilot studyhas been completed, and partners will gather health informationin their countries during 2007. One outcome is a reliable andvalid tool that will yield information on the health of peoplewith intellectual disabilities so that any negative disparities maybe identified and addressed, and their healthy aging may bemonitored over time.

SummarySome pathways to improving health among women withintellectual disabilities have been charted, if not fully explored.Core elements are lifelong education about health, goodcommunication with health professionals, responsive living andworking environments, effective health promotion strategies and


better access to health systems. Service providers might adaptenvironments, both physical and social, by working incollaboration with women themselves. At systems level, healthprofessionals are urged to examine how to embed certaincompetences in training—such as taking time and communicatingeffectively with women who have distinctive needs. Policymakersin Ireland and throughout Europe will benefit from robust healthinformation that will enable them to chart trends, makecomparisons and measure the impact of interventions.

Patrica Noonan Walsh,University College Dublin

ReferencesBarr, O., Gilgunn, J., Kane, T. and Moore, G. 1999 Health

screening for people with learning disabilities by a communitylearning disability nursing service in Northern Ireland, Journalof Advanced Nursing 29 (10), 1482-91.

Davies, N. and Duff, M. 2001 Breast cancer screening for olderwomen with intellectual disability living in community grouphomes, Journal of Intellectual Disability Research 45 (3),253–7.

Eckermann, E. 2000 Progress in development of genderindicators, pp. 11-14 in Dialogue for Women’s Health Rights:Report of the Southeast Asian Regional GO-NGO PolicyDialogue on Monitoring and Implementation of the BeijingPlatform for Action, 1-4 June 1998, Kuala Lumpur.

Grover, S.R. 2002 Menstrual and contraceptive management inwomen with an intellectual disability,Medical Journal ofAustralia 176 (3), 108-10.

Jansen, D. E. M. C, Krol, B., Groothoff, J. W. and Post, D. 2004People with intellectual disability and their health problems:A review of comparative studies, Journal of IntellectualDisability 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 DisabilityResearch 47 (6), 417–27.

Rodgers, J., Lipscombe, J. and Santer, M. 2006 Menstrualproblems experienced by women with learning disabilities,Journal of Applied Research in Intellectual Disabilities 19, 364-73.

Rimmer, J.H. 1999 Health promotion for people with disabilities:The emerging paradigm shift from disability prevention toprevention 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 riskfactors for poor health in residential settings for people withintellectual disabilities, Research in Developmental Disabilities21, 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 problemsof people with intellectual disabilities: The impact for generalpractice, British Journal of General Practice 57, 64-6.

Sullivan, S.G., Glasson, E.J., Hussain, R., Petterson, B.A., Slack-Smith, L.M., Montgomery, P.D. and Bittles, A.H. 2003 Breastcancer and the uptake of mammography screening services bywomen with intellectual disabilities, Preventive Medicine 37(5), 507-12.

Walsh, P.N. and LeRoy, B. 2004Women with disabilities agingwell: A global view. Paul H. Brookes. Baltimore.

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Health

What is epilepsy?Epilepsy is a chronic disorder with recurring seizures ofunknown cause. Anyone can have a seizure, if the brain isexposed to a strong enough stimulus. It is estimated that thereare 30,000 to 40,000 people with epilepsy in Ireland. The impactof epilepsy will vary from one person to another. For mostpeople, epilepsy will affect their life for a short period of time;however, for others it may have longer lasting impacts. Peopleuse different words when talking about their epilepsy. Some saythey have seizures; others call them fits or ‘funny turns’.

Some causes of epilepsy are unknown (idiopathic); othercauses may include being born with the condition, the result ofan infection, a motor accident, a brain tumour, poisons (toxins)or perhaps a serious electrical shock or chemical irritation.

When you have a seizureWhile there are many types of epileptic seizures, some willaffect your consciousness, breathing and may cause injury if youfall. It is important someone to stay with you all the time. If youare standing, someone should support you to ease your fall.They should loosen your clothing, but not move you unless

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

A seizure diaryIt can be helpful to make a note ofseveral things about seizures andwhat 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 asother relevant information such as changes in medications,infections, hormonal changes (e.g. menstruation,menopause). This should be shown to your doctor to helphim/her decide what treatment / medication is best for you.

Staying safe with epilepsyMany people can lead a normal life with epilepsy. However itis important to look after yourself, and your carer or familymay be able to help you here. A healthy diet is veryimportant. Constipation may trigger a seizure, so a high-fibrediet is important, as well as an adequate fluid intake. It isimportant to keep active, but you should avoid unnecessarystress. Relaxation techniques can help, and, of course, regularrest and sleep.

It is important that the people around you know that youhave epilepsy—they should be aware how long a seizure maylast and what they can do to help. You, and they, need to beaware of the possible dangers at home and in your dailyenvironment. You don’t want to be over-protected, but youdo need to know that you are in a safe place.

Epilepsy — did you know?

During the time of the ancient Greek doctor Hippocrates,treatments for epilepsy included eating hippopotamustesticles and drinking tortoise blood!! I promise you, thatis not what you are going to be told here.

Classification of EpilepsyThe World Health Organisation in 1980 devised aninternational classification system for the various types ofepilepsy:Partial seizures � Simple partial

� Complex partial

Generalised seizures � Absence seizures� Myoclonic� Tonic seizures� Tonic Clonic seizures

Status EpilepticusStatus epilepticus refers to a number of seizures with norecovery between each one. This is considered a majoremergency, requiring immediate medical assistance.

What can trigger or cause a seizure?An infection, lack of sleep, overtiredness, stress orworry, too much alcohol, loud noises or flashing lights

Once the likely triggers are known, it may be possible toavoid them and to limit the number of seizures.


SPEAKING UP: A plain text guide to advocacy, by John Tufail andKate Lyon. London, Jessica Kingsley Publishers (2007). Individualvolumes £13.99/14.99; 4-volume set, £45.00.Introducing advocacy: ISBN 978 1 84310 475 9Rules and standards: ISBN 978 1 84310 476 6Listen up! Speak up!: ISBN 978 1 84310 477 3Advocacy in action: ISBN 978 1 84310 478 04-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 self-advocate. The reviews here of three of the books should encouragemany people to investigate the full series, both for individuals andfor self-advocacy groups.

INTRODUCING ADVOCACY (Book One)The word advocacy is a term that is being

used ever more increasingly within the socialservices and civil and human rights circles in thecontext of working with children, people withdisabilities and people with mental healthproblems. Advocacy is described as ‘speakingon behalf of a person or empowering thatperson to speak for him or herself’ (Citizens

Information Board). In a time where the emphasis is onpromoting people’s rights, Tufail and Lyon have recently producedan excellent and timely publication Introducing advocacy, whichaims to promote self-advocacy to disabled individuals who want tolearn to speak up for themselves.

This book is a manual for promoting self-advocacy and equalpartnerships between advocate and user. Authors Tufail and Lyon,directors of People’s Advocacy Network in New Zealand, are wellexperienced in the field of advocacy. The book is clearly written andis consistent in style and presentation. The contents are set out overten chapters which outline the different models of advocacy. Thetext is pitched at a level for the reader to gain a basic understandingof each model and each chapter provides the reader with a range ofquestions to help them recap on the content and raise questions oftheir own for discussion. The authors cleverly capture the reader’sattention with colour illustrations that provide visual stimulationthroughout each chapter. The use of such illustrations could allowthe reader time to reflect on the content of the text and also helpengage those readers who require extra assistance with theirliteracy skills. As the book is intended to serve ‘as a training aid toexpand the life skills of the individual with learning difficulties’,perhaps the encouragement of the use of drawing and art couldhave been promoted and built upon in the questions section ofeach chapter, as a means of getting readers to express andcommunicate their views on the topic area.

Advocacy draws attention to the need for the individual’s viewsto be expressed, communicated and understood by those aroundthem and that advocacy is not what other people think theindividual wants. Tufail and Lyons clearly and consistently reinforcethis message throughout the book and illustrate this through the

SwimmingIf your seizures are frequent, don’t putyourself in danger by swimming on your

own. It is usually safer to swim in apool, 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 tosupport someone when they have a seizure.

IdentificationA special identitybracelet or neckpendant is a stylish way oftell people you have epilepsy—at thesame time allowing you to keep some privacy. Youshould also carry a card with details of your medicationand emergency contact numbers.

MedicationSeizures may happen if you forget to

take the medication or tabletsprescribed by your doctor. Because the

medication may need to be takenover 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 withlabelled compartments for each day of the week, or youmight mark off the days on the calendar to show youhave taken your medication. Carers/family members canhelp you, if necessary.There may be some side effects from taking themedication, but if you continue to feel unwell for morethan a few days you should discuss this with your doctor.The medication may not stop the seizures completely, butit does help to reduce them.Do not stop taking your medication unless yourdoctor says that it is OK!

SupportLiving with epilepsy affects people indifferent ways and it is important to beaware of the support mechanisms available.You can talk to your doctor and nurse, andyour family or carer, about your epilepsy.There are also some very good epilepsysupport groups and specialist services. Twovaluable website resources arewww.epilepsy.ie and www.epilepsy.com.

Liz McKeon,Lecturer in Intellectual Disability Nursing,

Dublin City University.


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Reviews


use of well-devised case studies to which most people canrelate. The case studies presented in relation to the differenttypes of advocacy (whether citizen advocacy, crisis orintervention advocacy or health-complaints advocacy) generateand trigger thoughts in the reader which can help them toreflect and identify situations in which they may have foundthemselves. The reader is prompted by the informationpresented to begin to think of ways in which such difficultiescould be resolved and addressed in their own case. The centralargument of the book is that advocacy must be individualisedand it offers a clear approach highlighting the advantages anddisadvantages in engaging and working with an advocate.

Many people who require advocacy services often need to beinitially informed that such services exist for them. Oftenhealthcare professionals and voluntary agencies are best placedto provide this information, but one must pose the question‘does this happen?’, and if not, why not? In reading this bookand through consultation with others, one realises that perhapsprofessionals may not be as knowledgeable and as informedabout the subject area as we would like. This book is the idealtool to equip and inform the professional in promotingadvocacy for their clients. The role of the advocate, the range ofadvocacy services and their aim and functions are clearly set out,as well as what should and should not be expected of anadvocate. Each chapter can be read or referenced individually oras part of the integrated manual. The overall view of the bookis that it is factual and provides a good and comprehensibleguide to the range of advocacy services and models available tothe vulnerable person living in general society, residential andcommunity settings. Advantages and disadvantages of thevarious advocacy models are highlighted, which is helpful to theperson seeking an appropriate service to address their needs.Although the authors state that the book is aimed at promotingadvocacy and self-determination for people with learningdifficulties, the content is transferable and adaptable topromoting advocacy for any member of the community. It is agood 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 Ithought it would be something to help me tospeak up for myself. For many years now Ihave wanted to speak up at meetings. Orwhen people are talking about me it’s like Iam not there, and I want to shout out I havea view. I am always too nervous and afraidto make a fool of myself by saying

something stupid. This book gave me great hope. At firstlook it had bright pictures and lots of signs which were easy tofollow. The book is made up of six parts.1 Be strong for yourself 2 Roy’s story3 Listening 4 Points of view5 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 thingswhich happens to anybody with a disability when nobodylistens to us. I was given great hope when Roy won out and hislife 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 ofhelp to self-advocates, but it would take some strength to stopa meetings or to let the people attending the meetings knowthat you cannot understand what they are talking about. Iknow I get bored at meetings as people talk too fast and I losetrack.

I think all self-advocates should have a copy of this book tobring along to meetings to help them get more out them.

The only thing I didn’t like about the book was that some ofthe words were hard for me to read and understand, but still it isa very good book to help someone like myself to speak up. Thebook will also be very helpful to people dealing with self-advocates 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. Shecould not speak and had a problem sayingwords and had epilepsy and had to takemedication, a lot of it. Dilly found it hard

to understand things or work things out. Otherpeople had to make decisions for her and I think that Dilly shouldhave made her own decisions, because everyone has the right tomake their own decisions.

People in the house with Dilly said she had a bad temper andthey took her to the doctor to see what he could do. The doctorput her on medicine three times a day and I think her medicinemade her worse. When she was bad tempered she used to shout,throw things around the house and people used to complainabout her a lot.

The staff had to call her father in for a meeting to see whatthey could do to help Dilly with her problem. The meeting wenton, but Dilly was not at it. I think it was wrong not to ask her totheir meeting and it was her right to be there because themeeting was about her.

The staff and her father said they could speak for her, but sheshould be able to speak for herself. Later on Dilly was able tospeak for herself and I think that was great, because self-advocacy people should be able to speak for themselves andpeople who can’t could ask people to speak on their behalf.

Dilly improved a lot and had a support worker. She went out alot and did exercise and played music. That is important that shecould go out and do her own thing, isn’t that great now?

Advocacy is about helping people and speaking up forthemselves. It is good when people do that. Communication isabout understanding. Everyone can communicate, someone whocan’t talk at all can communicate, but most people don’t thinkabout it because it is too hard. It is important that youcommunicate with people and help them, and not to get lazyand blame people when they cannot understand.

Advocates can communicate by phone, also by letter or emailor fax. They can set up a computer conference or use Braille orsigning. It is great for self-advocacy people to do that sort ofwork.

Self-advocates who communicate at a self-advocacy meetingshould be careful what they say, but what they say should staywhere the meeting was. That is very important. Self-Advocacypeople have the right to say what they want to say. That’sanother good thing about going to advocacy meetings. Self-advocacy people can go to their organisation if they want helpwith their problem and sort it out.

Self-advocacy people can live independently, do their ownthing and get support and help and advice if they need it. Rightsare very important for everyone, not only self-advocates, buteveryone else too.

In the story in the book, Mandy did not have a wheelchairand the advocacy group helped her to get it. They had to writelots of letters to get it. Eventually she got her wheelchair. It wasright she got it and that, then, she could get around and about.

Paul Alford,Dublin


Meeting the Needs of Children withDisabilities: Families and professionalfacing the challenge together, byHelen K. Warner. London, Routledge(Taylor & Francis) (2006). ISBN 0-415-28038-9.

While the child with disability hassimilar needs to any child in society,he/she also has additional and uniqueneeds requiring specialist approaches

to care. The aim of this book is to highlight the principles thatdefine the fundamental aspects of care delivery to children withspecial needs. Areas of knowledge and practical skills exploredinclude: 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 bythe English Nursing Board as essential for student nurses. However,the reviewer supports the notion that this book will actually beinvaluable for qualified nurses and other health professionalsworking with children with disabilities in a variety of settings. Thebook is one of few books that separate the needs of children fromthose of adult, and which plans accordingly. The first four chaptersare quite theoretical, exploring the fundamental needs of childrenwith disabilities and examining the sociological, historical andethical perspectives. While these four chapters are all important,student nurse will find the following ten chapters more interestingand practical, as they offer key constructive tips on caring forchildren with a disability. Warner offers some recommendationsfor changes and implementation of policies in organisations andhealth trusts. The reviewer found Chapter Eight particularly usefulas it provides some concrete information important forunderstanding the complexities of eating and drinking for a childwith disability.

In the final chapter of the book, Warner offers a summary ofeach chapters and key recommendations for the future. Her finalwords suggest there should be an emphasis on preparation for thechild with disability, especially in terms of admission to respite careand preparing to meet the developing needs of the child withdisability.

While this book is aimed at the UK audience and makesreference to key UK documents, framework and policies, the coreissues discussed are also applicable for the Irish setting. Thispaperback book is well presented and concise in nature, an all-important trait that may entice the student nurse to read it. Insummary, while the book would not suffice as a core text forstudent nurses in the Irish setting, it will provide some valuablebackground information and a good reference base for issuesrelating 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 ShirleyConlon (2007). STEP Enterprises, Carmanhall Road, Sandyford,Dublin 18. €39.95+pp. Tel: 01-2952379;email: [email protected]; [email protected].

During 2005, Yvette Ebbs and Shirley Conlon ran a basic cookerycourse (at Dún Laoghaire College of Further Education) for tenSTEP Enterprise service users who were given the opportunity tobuy, prepare and cook healthy meals. They were also taught aboutpersonal hygiene and safe cooking. The class was very successful,

but they soon realised that a basiccookbook would enable individualsto develop their cookery skills in theirown home, and in their own time.Not finding a suitable publication onthe Irish market, Ebbs and Conlondecided to try to fill the gap. Theyhave produced the Step by step guideto basic cookery, which comprises asturdy A4 ring-bound illustrated bookand an accompanying DVD.

I asked Bridie Smith (B. Ed. InHome 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 andinexpensive. The ingredients are mainly local, easy to source, withthe bonus of being very familiar. Using this book should providemany hours of fun activity and interaction, whether with staff orfriends or family. It would make a lovely present! With both safetyand flavour in mind, the cooking time for the stew should beextended to one hour and 20 minutes, instead of just 30 minutes.For the half-pound of meat specified in the recipe, and the addedtin of oxtail soup, using a full stock cube seems excessive—in anycase I would prefer the flavour of Knorr cubes rather than Oxo, orpreferably the use of fresh herbs, if they are available.’

Unfortunately Bridie did not have an opportunity to view theaccompanying DVD, which gives a second visual approach to theprocedures already described and illustrated in the book. Thecookery course, in both book and DVD, is well organised inseparate, brief sections. Breakfast choices include instructions forfried, poached, scrambled and boiled egg, and for porridge andbacon and sausages. Lunch recipes are for omelette, hamburger,baked potato with various fillings, and a basic salad. Thepreparation and cooking of several vegetables is covered in onesection, and a separate ‘chapter’ gives three ways of cookingpotatoes. 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 sayson the tin’. It is a step-by-step guide. And it is basic. There are fewvariations—no pasta fresca or Moroccan stew, and sadly, nodesserts (but, of course, healthy fresh fruit needs no cooking)! Theequipment shown is an electric cooker and a George Foreman grill(rightly considered both healthy and safe to use). Slightly differenttechniques are necessary when using a gas cooker safely, and usinga microwave has become an everyday skill for most of us.(Admittedly, as Bridie pointed out, the microwave may lead just tothe dreaded ‘ready meal’, without learning any real cooking skills.)As already said, this is a basic book/DVD—further support will beneeded for new cooks in their individual settings and for theirindividual cooking preferences.

Congratulations to Yvette and Shirley, and TO STEP Enterprises,for undertaking the huge task of putting together and publishingthis dual-media course. It will be very useful for individuals in theirown kitchen, and the DVD provides added value for groups inpreparation for independent living. It presents a valuable first-steps approach to the world of cooking, giving readers/viewers theessential skills to venture further as they develop a taste forcooking (too many puns, sorry).

Bridie Smith, B.Ed. in Home Economics,Mary de Paor

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