Colouring my choiceI ask to choose to have the choiceto paint with colours of my own voice,the turquoise sun I have selected,striped stars and spotted plants respected.The speed I paint – do not demandbut with encouraged growth let my palette expand.Given the power to hold the brushso I may paint my own potential,my passion never told to hush,my picture exponential.What matters mostUnique by design, equal in each degree,I ask you not to talk about, but to talk instead with me.Dignity deserved, preserve my independence and advocatethat I may have the right to choose the colours with which I paint.Brigid O’DeaReport of theÁras Attracta SwinfordReview GroupJuly 2016
Following the broadcast of the Prime Time programme ‘InsideBungalow 3’ by RTE, the Áras Attracta Swinford Review Groupwas established by the Health Service Executive to undertake anindependent review of the quality of care being provided in ÁrasAttracta. The findings of the Review Group are presented over aseries of three reports.What matters most sets out the findings of the Review Groupin relation to Áras Attracta itself. It includes recommendationsrelating to Áras Attracta management, actions for the HSEat a national level, and a ‘road map’ to guide all managers ofcongregated settings as they move towards decongregation.Time for action deals with the wider system of service provision forpeople with a disability, and proposes a range of actions including55 priority actions that emerged from a national process ofconsultation with stakeholders involved in disability services and thewider public.Start listening to us is a documented record of the lived experiencesof people with intellectual disability and how they perceive thesupport they receive.
What matters mostReport of theÁras Attracta SwinfordReview GroupJuly 2016
Published by:Áras Attracta Swinford Review Group July 2016Commissioned by:National Director, Social Care DivisionFeidhmeannacht na Seirbhíse Sláinte / Health Service ExecutiveDr Steevens’ HospitalDublin 8Phone: 353 (0)1 635 2000Editorial and design consultants:Rédacteurs Limited, www.redact.ie.Printed in Irelandii
Foreword‘Inside Bungalow 3’, an RTE Investigations Unit programme shown on PrimeTime on 9 December 2014 will leave a lasting and indelible impression onanyone who viewed it. The programme focused on a situation where someof the most vulnerable people in our society, seven women with intellectualand physical disabilities living in a congregated residential setting, ÁrasAttracta, run by the Health Service Executive (HSE), were subjected to abuse.The footage shown had been taken by an undercover reporter working forRTE who had posed as a student care worker, and who had placed a hiddencamera in Bungalow 3 for a number of months.Quite rightly public outcry ensued.Everyone with an intellectual disability has the right to the sameopportunities as anyone else to live a satisfying and valued life, and to betreated with dignity and respect. They should be able to live in a placethey call home, be able to develop and maintain relationships, and get thesupport they need to live healthy, safe and rewarding lives.As a society we are quite a long way from making that reality happenand for some years to come we may still be reliant on large institutionalprovision for care and support. Therefore, while making the simple visionoutlined above a reality, we will need to ensure that all residents aretreated with respect, dignity and compassion by staff who have the values,knowledge, skills and time to care for and support them.One of the initiatives taken by the HSE following the showing ofthe programme was to establish this Review Group to undertake anindependent review of the quality of care being provided in Áras Attracta.Our approach to the task has been to put residents and their relatives atthe centre of all of our activities. In this way we have brought a differentperspective to assessing what matters most in respect of the quality of careand support that is being provided and what needs to be done to makethings different and better for residents.The report we have produced highlights the findings of the Review Groupin relation to Áras Attracta itself. It identifies a number of key initiativesfor the HSE to take in the wider intellectual disability sector in the comingtwelve months. It also includes an action plan directed to managers of allcongregated settings, identifying the steps needed to support a rightsbased social model of service delivery, in compliance with national policy.These initiatives could enhance the lives of people with intellectualdisabilities living in congregated settings in Ireland. They should also help toprevent situations such as those that took place in Áras Attracta occurring inthe future.iii
The fallout from the screening of the RTE programme has been extensivefor the people who live in Áras Attracta, their relatives, the staff andmanagement, the HSE as nominated provider, and other agencies that havean involvement with the centre. Events have combined to create a situationof ongoing flux, change, fear and uncertainty for residents, their families,and staff alike.This report is one of a series of reports produced by the Review Group. Aspart of our work we undertook a consultation exercise and have produceda report Time for action which sets out the responses to the questions andissues posed in the consultation. We also produced an ‘easy read’ versionof the consultation paper and engaged Inclusion Ireland to organise andfacilitate focus groups of self-advocates throughout the country. Theoutcome of these groups is contained in the report Start listening to us.It is the hope of the Review Group that the impact of the events themselves,the work of the group and initiatives taken by the HSE will result in animprovement in the quality of life not only for the people living in ÁrasAttracta, but for others who live in congregated settings elsewhere.There can be no doubt about the changes that are necessary.Dr Kevin McCoyAras Attracta Swinford Review Group MembersDr Kevin McCoy, Child Care and Social Care Consultant, ChairDeirdre Carroll, Independent Disability Policy AnalystAnn Judge, Management and Organisation Development ConsultantDr Bob McCormack, Service Quality Consultantiv
AcknowledgementsThe Review Group offers its sincere gratitude to those who participatedin the review especially the residents and their relatives who contributeddirectly to this review and to them we are extremely grateful.We would like to thank the management and staff of Áras Attracta whogave readily of their time to assist the work of the group members and itsspecialist consultants.Thanks are also due to the general practitioners attached to the centre andthe representatives of the following trade unions who met with the ReviewGroup – IMPACT, SIPTU, PNA and TEEU.We could not have completed our task without the assistance of the peoplelisted below.SpecialistConsultantsLiz Chaloner *Bernard McDonaldPaul WhiteMr Stephen Biesty, HSE Senior Manager for the Review Group.Ms Marian Cavanagh, HSE Support Officer for the Review Group.Inclusion Ireland for organising the focus group, the output of which isincluded in Chapter 2.The Team of POMSAssessorsMargaret Farrell, who coordinated the SurveySuzanne Bennett, Sunbeam House Services, BrayNora Brosnan, Kerry Services, St. John of GodHospitaller ServicesJohn Farrelly, Dunshane Camphill CommunityGeraldyn Jackman, Cheshire Services, TullowMichael Tiernan, Malta Services, DroghedaSarah Walshe, Cheeverstown House Services, DublinThe Advocatesfrom the NationalAdvocacy Serviceswho undertookthe ‘Day in the LifeExercise’Clare O’Neill, Senior AdvocateElaine Morris, AdvocateJosephine Keaveney, Advocacy Service Manager,Western Region, National Advocacy Service for Peoplewith Disabilities.Ms Ciara O’Halloran, MCOThanks are also due to Kaytlin Chaloner, Dr Lorna Day and Brigid O’Dea fortheir administrative assistance.* Liz Chaloner deserves special mention for her work in shaping up our approach to manyimportant aspects of the review and for her skill and dedication in preparing our report forpublication.
NOTEIn carrying out this review in accordance with the Terms of Reference, theReview Group considered the operation of the bungalows and units at ÁrasAttracta at the latter end of 2015.The Review Group wanted to learn directly from the residents, their relativesand staff at Áras Attracta about their experiences of living and working inÁras Attracta.To do this, the Review Group undertook a number of internationallyrecognised exercises designed to ascertain the views of residents, relativesand staff about the quality of care being provided in Áras Attracta. Theseincluded meetings with groups of residents, relatives and staff which werefollowed up with questionnaires issued to relatives and staff (completedanonymously).In addition, the Review Group commissioned advocates to look at ‘A Dayin the Life’ of three residents. The Review Group also commissioned anexamination of the Quality of Life of a sample of 21 residents drawn fromthe total cohort of residents.This report reflects the comments and observations made by thoseresidents, relatives and staff in relation to their own experiences andtherefore such comments and observations do not and cannot apply to allstaff.vi
ContentsA. INTRODUCTORY1.Background to the Áras Attracta review1B. PERSPECTIVES: RESIDENTS2.What Áras Attracta residents told us 173.A day in the life of three residents of Áras Attracta4.Measuring the quality of life at Áras Attracta 3925C. PERSPECTIVES: RELATIVES AND STAFF5.Relatives’ perspectives on services in Áras Attracta6.Staff perspectives on services in Áras Attracta6579D. MANAGEMENT REVIEW7.Management review questionnaires 1118.Person-focused assurance, part 1: profile of Áras Attracta9.Person-focused assurance part 2: thematic review133145E. IN CONCLUSION10.Where we go from here165F. APPENDICESAppendix A: Terms of ReferenceAppendix B: Bibliography184Appendix C: Acronyms185HSE response to recommendations179187vii
What matters mostviii
AINTRODUCTORYChapter 1: Background to the Áras Attracta review sets the context forthe work of the Review Group. It includes: A short overview of the context within which the Review Group wasappointed and an outline of its key objectives. Some background on Áras Attracta and its residents – where they came fromand a gender and age profile. Some details of the legislative and policy background. Details of some important local factors that influenced the work of theReview Group. A description of how the Review Group approached its task.
1Background to the ÁrasAttracta reviewFollowing the broadcast of the RTÉ Prime Time Investigates programme‘Inside Bungalow 3’ in December 2014, the HSE commissioned anindependent review of the quality of care at Áras Attracta. The Áras AttractaSwinford Review Group was appointed within a month of the broadcastof ‘Inside Bungalow 3’, and its terms of reference were agreed on 7 January2015 – see Appendix A1.The Áras Attracta Swinford Review Group consists of specialists in the fieldsof intellectual disability, the protection of vulnerable people, and changemanagement; and the group was supported by people with expertise inthe areas of disability, ageing, and social research. The key objectives of theReview Group in carrying out our work were: To review the programme of work already under way at Áras Attracta on footof reports from HIQA and the HSE, to establish the effectiveness of this work,to identify any gaps in service, and to make recommendations for furtherservice improvements. To identify any issues of immediate concern in relation to the care and safetyof the residents, and to bring these to the attention of the HSE. To identify any factors that might have caused or contributed to the eventsshown in the Prime Time programme. To recommend actions to reduce or eliminate the risk of events such as thoseshown in the Prime Time programme happening again. To recommend actions to ensure that the learning from the Review Group isreflected and promoted throughout the residential care sector.1.1 About Áras AttractaÁras Attracta is a HSE-run residential centre located in Swinford, a small ruraltown in Co. Mayo. At the beginning of this review there were 96 men andwomen with intellectual disabilities living in Áras Attracta. It is located on a13 hectare site and comprises 29 buildings, including 16 bungalows rangingfrom 200 to 400 square metres in size, an administration block and a suiteof offices, training rooms, a swimming pool and gym, a Snoezelen, a prayerroom, a day centre, a canteen, and lots of open space. Over 300 peoplework at Áras Attracta, including nurses, health and social care assistants,social care workers, allied health professionals, administrative staff, servicestaff, and others. A number of contracts for service also exist – for example,cleaning, catering, transport, security, hairdressing and laundry (exceptpersonal laundry).See chapter 8 for more detailed information about Áras Attracta.
What matters mostWhere residents came fromOpened in 1988, Áras Attracta was a specially designed campus-style facilitydeveloped to look after adults with intellectual disabilities. Approximately athird of residents previously resided in their own homes, about a third weretransferred from St Mary’s Psychiatric Hospital in Castlebar, and roughlya third came from other institutions, residential centres or psychiatrichospitals.Table 1.1 Place of residence of current residents prior to transfer to Áras AttractaPlace of residence prior totransfer to Áras AttractaNumber of residentsTheir own home30St Mary’s Hospital Castlebar31St Mary’s Drumcar7Brothers of Charity6Other22When residents arrivedRoughly two thirds of the current Áras Attracta residents arrived before1993. The largest intake was in 1992 following the closure of St Mary’sCastlebar. Only one or two new residents have arrived in most years since1992.Table 1.2 Year of arrival of residents at Áras AttractaYear of arrivalNumber of residents1988–1992341992311993 to date31Gender of residentsMen make up 62 per cent and women make up 38 per cent of residents.Age profile of residentsMany of the people living in Áras Attracta are now older people, with morethan half being over 60.Table 1.3 Age range of residents in Áras AttractaAge range Number of 91580–893
Áras Attracta Swinford Review Group1.2 Legislative and policy contextThe legislative framework, policy context and general thinking about thecare and support of people with intellectual disabilities has changed sinceÁras Attracta was established in the late 1980s. Even at that time, questionswere beginning to be raised internationally as to whether ‘congregatedsettings’ were the best place for people with disabilities to live, withincreasing emphasis being placed on community inclusion for people withdisabilities. A summary of key reports, legislation, strategies and policies relatingto people with disabilities is outlined below, together with some recentchanges relevant both to the lives of people with disabilities, and the workof the Review Group itself.Table 1.4 Summary of key reports, legislation, strategies and policies1996: importantreports ondisability servicesThe Commission on the Status of People with Disabilities published A Strategyfor Equality: Report of the Commission of the Status of People with Disabilitieswhich argued for legislative change and a recommendation to redesign alldisability services to enable provision ‘in the mainstream’.Also in 1996 came the publication of Towards an independent future, the reportof the Review Group on Health and Social Services for People with Physical andSensory Disabilities. This had the stated aim ‘to enable people with physicaland sensory disability to live as independently as possible in the community’.4One of the outcomes of these reports was the establishment of the NationalIntellectual Disability Database (NIDD) and the National Physical and SensoryDisability Database (NPSDD), which were designed to collect data which couldassist the planning of services. Education Act 1998The Education Act 1998 provides for the education of every person in the stateincluding any person with a disability or special education need.Health Act 2004This Act established the Health Service Executive (HSE) as the body responsiblefor the provision of health care services in this state. The Health Act 2004requires the HSE to ‘use the resources available to it in the most beneficial,effective and efficient manner to improve, promote and protect the health andwelfare of the public’.For a fuller description of the historical perspective see McCormack, B., 2004. Trends in the development of Irishdisability services. In Walsh, P.N. and Gash, H. eds., 2004. Lives and times: practice, policy and people with disabilities. Bray,Co. Wicklow: Rathdown Press. A congregated setting is one where ‘ten or more people with disabilities live together or in close proximity’(HSE, 2011, Time to move on from congregated settings: a strategy for community inclusion, p.25). HSE, 2011. Time to move on from congregated settings: a strategy for community inclusion, p10.4Costello, L. and Cox, W., 2013. Living in the community: services and supports for people with disabilities. Dublin: DisabilityFederation of Ireland, p.18.
What matters mostNational DisabilityStrategy, 2004The National Disability Strategy was launched in 2004 to underpin theparticipation of people with disabilities within Irish society. The strategy builton existing policy and legislation, including the policy of mainstreaming publicservices for people with disabilities. It comprised three key elements: The Disability Act 2005 – Part 3 of which required six Governmentdepartments to prepare sectoral plans; and Part 5 provided for a statutorytarget for the recruitment and employment of people with disabilities in thepublic sector. The Education for Persons with Special Educational Needs Act 2004. The Citizens Information Act 2007.The strategy was endorsed in the subsequent partnership framework, Towards2016 (see below).Equality Act 2004The Equality Act 2004 prohibits discrimination, harassment and victimisation oneleven grounds, including disability and age.Education forThe Education for Persons with Special Educational Needs Act 2004 provides forPersons with Special the provision of education plans in an inclusive environment for students withEducational Needsspecial educational needs.Act 2004Disability Act 2005The Disability Act 2005 supports the provision of disability-specific services andimproved access to mainstream public services through a range of measures.Towards 2016(published in 2006)Towards 2016, published in 2006, was a ten-year strategy agreed within the(former) Social Partnership Framework which envisioned that people withdisabilities have, ‘to the greatest extent possible, the opportunity to live afull life with their families and as part of their local community, free fromdiscrimination’.5 A ‘life cycle’ framework for health and social services wasadopted and it was envisaged that every person with a disability would: Have sufficient income to sustain an acceptable standard of living. Have access to appropriate care, health, education, employment andtraining, and social services. Have access to public spaces, buildings, transport, information, advocacyand other public services, and housing. Be supported to enable them, as far as possible, to lead full andindependent lives, to participate in work and in society, and to maximisetheir potential.It was also envisaged that carers of persons with a disability would beacknowledged and supported in their caring role.Citizens Information The Citizens Information Act 2007 established the Citizens Information BoardAct 2007and provided for the development of a personal advocacy service for peoplewith disabilities, which became the National Advocacy Service in 2011. 5 Department of An Taoiseach, 2006. Towards 2016: Ten-Year Framework Social Partnership Agreement 2006-2015.
Áras Attracta Swinford Review GroupUnited NationsConvention on theRights of Personswith Disabilities(UNCRPD), 2006The United Nations Convention on the Rights of Persons with Disabilities(UNCRPD) was adopted in December 2006 and has since been ratified by156 countries. Ireland is a signatory to the UNCRPD, but has not yet ratified itbecause of legislative obstacles which are currently being addressed.States that ratify the Convention undertake to ensure and promote the humanrights of people with disabilities without discrimination. The guiding principlesunderpinning the UNCRPD are:a. Respect for inherent dignity, individual autonomy including the freedom tomake one’s own choices, and independence of person.b. Non-discrimination.c. Full and effective participation and inclusion in society.d. Respect for difference and acceptance of persons with disabilities as part ofhuman diversity and humanity.e. Equality of opportunity.f. Accessibility.g. Equality between men and women.h. Respect for the evolving capacities of children with disabilities to preservetheir identities.The UNCRPD addresses the issue of the equal right of all persons withdisabilities to live independently in the community, with choices equal toothers, and to be included in the community.‘States Parties to this Convention recognise the equal right of all persons withdisabilities to live in the community, with choices equal to others, and shalltake effective and appropriate measures to facilitate full enjoyment by personswith disabilities of this right and their full inclusion and participation in thecommunity .’ (Article 19 of UNCRPD).Time to move onfrom congregatedsettings – a strategyfor communityinclusion (HSE,2011)The key principle of the HSE’s Time to move on report is that all housingarrangements for people moving from congregated settings should be inordinary neighbourhoods in the community with individualised supportstailored to meet the residents’ particular needs and wishes.National housingstrategy for peoplewith a disability2011–2016 (Dept ofthe Environment,Community andLocal Government,2011)The vision outlined in the National Housing Strategy for People with a Disabilityis that people with disabilities will be facilitated to access ‘the appropriaterange of housing and related support services, delivered in an integrated andsustainable manner, which promotes equality of opportunity, individual choiceand independent living’ (p.7).As part of the implementation of this strategy, 1 million euro was transferredto the Department of the Environment, Community and Local Government(DCELG) from the Department of Health in 2013–2014 to provide housing forup to 150 people leaving disability or mental health institutions. In 2015, afurther 1 million was allocated to DCELG to continue this process.6The strategy cites international research which consistently points to thebetter quality of life that people with disabilities enjoy in community settingscompared with those living in institutional care (p.125). 6Houses of the Oireachtas, 16 July 2015, Written answer 537 to question 29994/15
What matters mostNew directions– review of HSEday services andimplementationplan 2012–2016(HSE, 2012)New directions is the HSE’s national guidance framework for day programmesof personal support services for adults with disabilities. It proposes thedevelopment of a person-centred individualised planning approach within aquality assurance framework. The focus is on the enhancement of the capacityof people and recognition of the diversity of their needs – with a view todelivering better outcomes and better value for money.Transforming lives(Dept. of Health,2012)Transforming lives is the programme to implement recommendations of theValue for money and policy review of disability services in Ireland (Departmentof Health, 2012). The key message from the review was the necessity to movefrom group-based service delivery towards a model of person-centred andindividually chosen supports.As part of the evaluation, an Expert Reference Group on Disability Policywas established to conduct a policy review, and from this Group’s publicconsultation on existing services what emerged was that people wanted‘flexible supports to suit individual needs, to use local services, do ordinarythings in ordinary places, with more opportunities for families to play their partin supporting their family members’. On reviewing existing services the ExpertGroup found little evidence of individual service provision; instead they foundthat there was a lack of standardised needs assessment, and that provision waslargely based in groups.HIQA’s enhancedrole fromNovember 2013From November 2013 the Health Information and Quality Authority (HIQA)became responsible (under the Health Act 2007) for the regulation of allresidential and residential respite services for children and adults withdisabilities , including those provided by the HSE, by private organisations andby voluntary bodies.This was the first time that all such services were subject to independentscrutiny. Safeguardingvulnerable personsat risk of abuse –national policy andprocedures (HSE,2014)Safeguarding Vulnerable Persons at Risk of Abuse – National Policy and Proceduresis a statement of the HSE’s policy and is currently being rolled out throughoutthe country with a programme of training for staff involved in the support ofvulnerable adults. It is at the early stages of its roll-out, and its full effect has yetto be realised. It was due for review at the end of 2015.Appointmentof ConfidentialRecipientIn December 2014, the HSE appointed a Confidential Recipient to whomanyone can in good faith address concerns and allegations of abuse,negligence, mistreatment or poor care practices in HSE or HSE-fundedresidential care facilities in good faith.7 The Confidential Recipient’s role isto advise and assist patients, service users, families, and other concernedindividuals and staff members on the best course of action to take to raisematters of concern, to assist with the referral and examination of concerns, andto ensure that these matters are appropriately addressed by the HSE and itsfunded agencies.
Áras Attracta Swinford Review GroupHSE NationalService Plan 2015In its National Service Plan 2015 (pp 51–5), the HSE sets out its intention toensure service improvement and to place quality and patient safety at theheart of health service delivery. It underlines the critical importance of goodgovernance and the need for continual enhancement of accountabilityarrangements. It outlines its plans for putting in place a new accountabilityframework in 2015 which makes explicit the responsibility of all managers todeliver on the targets set out in the Service Plan within the context of formalperformance agreements.In relation to services for people with disabilities, it identifies both theimplementation of the Department of Health’s Value for Money and PolicyReview, and enabling people to move from congregated settings, as servicepriorities. It aims to work towards the transition of up to 150 people fromcongregated settings to homes in the community in line with the Time to Moveon from Congregated Settings report (p53).It aims to support people with disabilities in line with the vision of the Valuefor Money and Policy Review. This includes the principles of a person-centredmodel of services and supports; involvement and participation of people withdisabilities in service design and delivery; enabling people with disabilitiesto achieve their full potential, including living as independently as possibleand achieving optimal independence and control of their lives; and enablingpeople with disabilities to pursue activities and living arrangements of theirchoice.Building a highquality healthservice for ahealthier Ireland– Health ServiceExecutive corporateplan 2015-2017(HSE, 2015)In March 2015, the HSE launched its corporate plan for 2015–17, Building a highquality health service for a healthier Ireland, setting out how the HSE aims toimprove the health service over the next three years. One of the plan’s goals isto deliver person-centred community-based services that support choice andindependence for older people and people with disabilities. The success of thiswill be measured by ‘less people with a disability living in congregated groupresidential settings’ (p.7).8Assisted DecisionMaking (Capacity)Act 2015The Assisted Decision-Making (Capacity) Act 2015 was signed into Irish law inDecember 2015, repealing the Lunacy Regulation Act 1871 and the Marriageof Lunatics Act 1811. The new Act will result in significant changes in the livesof people with intellectual disabilities, as their ability to make decisions forthemselves where possible, will be enshrined in law.Enactment of this law also removes a barrier to Ireland’s ratification of theUnited Nations Convention on the Rights of Persons with Disabilities (UNCRPD) 1.3 The local context in 2015In addition to the policy and legislative landscape described above, anumber of other important local factors influenced the conduct of the workof the Review Group. At the time the Review Group embarked on its work, An Garda Síochánawas still in the process of undertaking its investigations. For that reason andfor fear of evidence contamination, the Review Group could not visit ÁrasAttracta until early February 2015.8See http://hse.ie/eng/services/corporateplan20152017
What matters most Changes in personnel at senior management level in Áras Attracta hadresulted in an interim arrangement whereby the acting person in charge wason secondment from another service for a defined period which ended inMay 2015. A new Person in Charge/Director of Services subsequentl
specialist consultants. . Michael Tiernan, Malta Services, Drogheda Sarah Walshe, Cheeverstown House Services, Dublin The Advocates from the National . To review the programme of work already under way at Áras Attracta on foot of reports from HIQA and