Time to Move on From Congregated Settings

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iStockphoto.com/OwenPrice

Time to Move on from Congregated SettingsA Strategy for Community Inclusion

Report of the Working Group on

Congregated SettingsHealth Service Executive

June 2011


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Table of Contents

ChairpersonsForeword 3

TheProposedModelofAccommodationandSupportintheCommunity:AnOverview 8

ExecutiveSummary 10

PARTONE:THECASEFORACTION

Chapter1: Introduction 38

Chapter2: TheEvolutionofResidentialServicesforPeoplewithDisabilities 45

Chapter3: ThePeopleandthePlaces 49

Chapter4: TheLearningfromResearch 62

Chapter5: TheLearningfromInternationalExperience 79

Chapter6: TheCompellingCaseforAction 90

WeMovedOn:StoriesofSuccessfulTransitions

toLifeintheLocalCommunity 96

PARTTWO: PROPOSALSFORACTION:

THESTRATEGYFORCOMMUNITYINCLUSION

Chapter7: NationalPolicyandSupportFrameworkfortheTransitioningProgramme 107

Chapter8: MovingfromCongregatedSettings:ANewModelofSupportintheCommunity 114

Chapter9: FundingCommunitybasedSupportandHousing:OptionsandCostings 125

Chapter10: Funding,ResourcingandManagingtheTransitiontotheCommunity 136

Chapter11: SummaryofRecommendations 145

Bibliography 155

Appendices 164

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CHAIRPERSONSFOREWORD

IampleasedtopresenttheReportoftheWorkingGrouponCongregatedSettings,which is the outcome and culmination of a very significant piece of data capture,research and analysis. The Report was initiated by the Primary, Community andCommunity Care Directorate in 2007 to develop a national plan and associatedchangeprogrammeformovingpeoplefromcongregatedsettingstothecommunityinlinewithGovernmentpolicy.

From the mid 1800s onwards there was a view that the best way of providingsupport to people with disabilities was to care for them in residential institutions,separate from local communities. Over time, there has been a major shift in that

thinking.Asa society, the supports we now provideforpeople with disabilities aredriven by the values of equality, the right of individuals to be part of theircommunity,toplan fortheirown lives andmaketheirownchoices, andtoget thepersonalsupportstheyneedfortheirindependence.Theseexpectationsforpeoplewith disabilities are underpinned by our legislation and policy, as well as byinternationalconventions,andourknowledgeofevidencebasedbestpractice.

There has been a strong move bythestateovermanyyears toensurethatpeoplewithdisabilitieshavechoicesandoptionsbasedonthesevalues;mostrecently,theMultiAnnualInvestmentPlan(MAIP)providedadditionalfundingfora5yearperiod

(2005

2009).

307

new

respite

places

and

61

enhanced

respite

places

were

funded,

recognisingtheclearevidencethatprovidingrespiteisakeyelementinsupportingfamiliestoremainintheircommunitiesandavoidadmissionstoresidentialsettings.New residential places were also provided under MAIP; 804 new residential placesand406enhancedresidentialplaceswereprovided.

Service providers have also been taking initiatives to enable people to move fromcongregated settings. The survey conducted for the Working Group confirmed that46 centres surveyed for our Report have enabled clients to move into thecommunityfromcongregated settings,with 619 clientsmoved intothecommunityintheperiod19992008.

In spiteofthese initiatives by the stateand providers,agroupofpeopleremain incongregatedsettingsseparatefromcommunitiesandwithoutaccesstotheoptions,choices, dignity and independence that most people take for granted in their lives.Admissions to congregated settings in the period 1999 to 2008 (693) exceeded thenumbermovingout.In2008,45clientswereadmittedtoCongregatedSettings.

TheaimandcommitmentoftheWorkingGrouphasbeentomakeacompellingcasetochangethisrealityforthe4,000peopleinthe72centrescoveredbyourReport.Ourproposalsaimtoensurethattherewillbenofurtheradmissionsandnofurther

needforcongregatedsettings. Ibelievethatwehavemadethatcase,andthatour

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proposals are both feasible and imperative. The vast majority of those whosecircumstances are addressed in our Report have spent more that 15 years in acongregated setting.Many are olderpeople. The Working Group believesthatthetimetoactontheirbehalfisnow.

Thewayforward

The Working Group is proposing a new model of support in the community. Themodel envisages that people living in congregated settings will move to dispersedforms of housing in ordinary communities, provided mainly by housing authorities.They will have the same entitlement to mainstream community health and socialservices as any other citizen, such as GP services, home help and public healthnursing services, and access to primary care teams. They will also have access tospecialisedservicesandhospitalservicesbasedonanindividualassessment.People

willgetthesupportstheyneedtohelpthemtoliveindependentlyandtobepartoftheirlocalcommunity.Acorevalueunderpinningourproposalisthatpeopleshouldmaketheirownlifechoices,neithertheHSEnorServiceProvidersownaclientbuthavearesponsibilitytomaximisetheirindependence.

Thechallenge

The model proposed by the Working Group is simple in approach but willsignificantly challenge the system to deliver; it will present a challenge to manystakeholders,includingstaff,families,theHSE,serviceproviders,theDepartmentofEnvironment, Community and Local Government, and a range of governmentdepartmentsandagencies.

Iknowfromexperiencethatstaffworkingincongregatedsettingsarededicatedandmotivated to provide the best possible services to clients in very difficultenvironments. Many staff may feel that the proposed model will not meet theneeds of their clients. The proposals will test the capacity of service providers todeliver the new model. They will need guidance and advice as part of the changemanagement process. A significant investment will be needed for a change

managementprogrammetoassistserviceprovidersandstafftomeetthedemandsofthenewmodel.

Families will initially have concerns about their family member moving to thecommunity,soengagingwithfamiliesanddemonstratingsuccessisanintegralpartof change management. The proposed model will test also the capacity of PrimaryCare Teams to respond effectively to community needs and it will demand anaccelerationoftherolloutofPrimaryCareTeams.

Clearly,thedeliveryofhousinginthecommunityforhomesfor4,000overaseven

year period will be a significant challenge to the housing authorities especially inrecessionary times. A multiagency approach among key government departments

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and agencies will be needed to deliver the transition and the new modelsuccessfully. However, the framework for this multiagency approach is wellestablishedthroughthenationalDisabilityStrategyanditscomponentparts.

Fundingthetransfertothecommunity

The Working Group recognises the significant investment in existing congregatedsettings.In2008,1.6billionwasspentonDisabilityServices.1Thisfigurerepresents29% of the Primary and Continuing Community Care Budget in 2008 and increasedfrom 1.218 billion in 2006. The data collection from the 72 sites covered by theWorking Groups Report confirmed a spend of approximately 417 million oncongregated settings, which equated to 34% of the total Disability Budget forapproximately13%ofthepopulationofpeoplewithdisabilitiesandanaveragecostperpersonof106,000perannum.TheDOHCValueforMoneyandPolicyReviewwill provide a further level of analysis of the costs associated with people incongregated settings. This information will enhance the data in the report tosupportimplementationofthereportrecommendations.

The new model of community support envisages that people moving fromcongregated settings will use Primary Care and Specialist Supports in theCommunity,aswellascomplementaryNursingandSocialSupports;whenwefactorinthischangeinfundingmethodology,andalsoretainthecurrentlevelofresourcesnowinvestedincongregatedsettings,Iamsatisfiedthatthetotalnationalallocationforcongregatedsettingswillmeetthefuturecostsofthenewmodelofcommunity

basedsupportwhenallclientsarelivinginthecommunity.

However,wehavealsorecognisedsomeimportantnationalandlocalconsiderationsthanmustbefactoredintothefundingthetransitioningprocess:

Current levels of funding per person in congregated settings varysignificantly; we found that among the 72 centres reviewed for our report,the top ten per capita costs ranged from 152,000 per capita up to232,000 per capita per annum and the lowest ten centres range from37,000 to 66,000 per capita per annum. We have not attempted to

correlatedependency levelswithunitcosts. Some serviceproviders may beabletofacilitatethemovetothecommunity,withinexistingresourceswhilstotherproviderswillneedadditionalfundingeitherrecurringorforaperiodoftime. Itmayalsobenecessarytoredeployfundingfromonesitetoanothersite.

The international research demonstrates that even in the case of wellresourced services, bridging/transitioning funding may be needed tomaintainparallelsystemsforaperiodoftime.

1HSEResourceDistributionReview,2008.

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As I noted earlier, service providers have been using existing resources andsomeelementoftheMultiAnnualInvestmentFundingtofacilitatepeopletomove out of congregated settings. However, disability budgets have beenreducedbyaminimumof5%intheperiod20082010,andthereisnowlessflexibilitywithinbudgets,tofundfurthermovementtothecommunitywithin

existingresources.

Many current service providers have indicated their willingness to makeavailable to the state, their current assets, when the facility is closed.Revenuefromthesaleofsuchassetswouldgotowardscapitalinfrastructuraldeficitsinthemovetothecommunity.

Taking account of all these factors, the Working Group makes proposals for thetransitioningprocessthatinvolveretentionofcurrentresourcinglevels,flexibleuseof those resources alongside mainstream services, and provision for transitioning

fundingthroughaCongregatedSettingsFund.

Acceleratingthetransition

TheWorkingGroupproposesthatin2010isthatthereshouldbe57AcceleratedLearning Sites (also referred to as demonstration sites), which will demonstrateeffective,efficientandmostsustainablewaysofdeliveringthenewmodelofservice.The sites should include people with significant challenging behaviour in both ruralandurbansettingsandinbothHSEandVoluntarySettings.

AcknowledgementsandThanks

The term Working Group truly reflects the commitment and time given by eachmember of the group. I was very fortunate to chair a group who were stronglycommitted to enhancing the quality of life for clients in congregated settings. Theknowledgeandexperienceofthemembershipandtheirworkonkeyaspectsofthereport was invaluable in reachingconclusionsandrecommendationsoftheReport.

Accordingly,

I

would

like

to

record

my

sincere

gratitude

to

each

member

of

the

WorkingGroup.

I was also fortunate to have a Project Manager whose experience in disabilitymatters is well respected both in Ireland and internationally. His network bothnationally and internationally gave us easy access to research findings and keyplayers involved in the closure of congregated settings. He personally visited inexcessof30ofthe72sitesandhealsoconductedsitevisitstoEngland,WalesandSweden. HededicatedlongdaysandnightstoachievethegoalandIwishtorecordmysincerethankstohim.

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I also wish to record my gratitude to the National Disability Authority (NDA) whowere very supportive to us in providing meeting facilities, undertaking analysis ofdataandaccesstoresearch. IparticularlywishtothankMs.EithneFitzgeraldwhoworkedtirelesslytoensuremilestonesweremet.

Forthemanyserviceproviderswhowanttogetonwiththetaskofenablingpeopletomakethetransitiontocommunity,Iapplaudyourenthusiasmandwishyoueverysuccess.Forthosewho arenotfully convinced, Ihopethe workoftheAcceleratedLearningSitesandyourownexperienceofhowpeoplebenefitwillconfirmthattheourproposedmodelisasustainableentity.

Our focus should be on delivering what is achievable rather than dwelling onchallenges. Ihopethoselivingincongregatedsettingstodaycanlookforwardsoontoanewwayoflifeandanexcitingfuturewithinawelcominglocalcommunity.

PatDolanChairperson

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THEPROPOSEDNEWMODELOFACCOMMODATIONANDSUPPORTINTHE

COMMUNITYANOUTLINE2

Allhousingarrangementsforpeoplemovingfromcongregatedsettingsshouldbeinordinaryneighbourhoods(dispersedhousing) inthecommunity,with individualisedsupports(supportedliving)designedtomeettheirindividualneedsandwishes.

Dispersedhousing

Dispersedhousingmeansapartmentsandhousesofthesametypesandsizesasthemajorityofthepopulationlivein,scatteredthroughoutresidentialneighbourhoodsamong the rest of the population. All those moving from congregated settings

shouldbeprovidedwithdispersedhousinginthecommunity,wheretheymay: Choosetoliveontheirown Sharewithotherswhodonothaveadisability Sharetheirhomewithother peoplewithadisability(toamaximum offour

peoplewithadisability) Optforlongtermplacementwithafamily.

Supportedliving

Supported living means providing the range and type of individualised supports toenable each person to live in the home of their choice and be included in theircommunity. Formsofindividualisedsupportsinclude:

Inhomesupport

Inhome supports are those forms of support that enable the person to liveindependently and safely in their own home. As well as support provided by paidstaff,SmartTechnology(technologiesusedtosupportpeopletoremainindependent

intheirownhomes)shouldformpartofthenewmodelofinhomesupport.

Inclusionsupport

Inclusionsupportsarethosesupportsaimedatfacilitatingeachindividualtodevelopactive linkages and relationships with services and people in their own locality andlocalcommunity.

2SeeChapter8forthedetailedaccountoftheproposednewmodelofsupport.

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CommunitybasedPrimaryCareandSpecialistSupports

HSEPrimaryCareteamsshouldbethefirstpointofaccessforallmedicalandsocialcare including public health nursing, home help services, meals on wheels, socialwork, psychological interventions, with a clear pathway to secondary specialistdisabilityspecificteamswhenrequired.

Work/FurtherEducation

A range of employment options, with appropriate supports, should be available.These services should be independent of inhome supports and should offeropportunitiesformeaningfulwork.

Person centeredplanning

Each individual should develop their own personcentered plan tailored to theirindividualneeds,wishesandchoices.

Advocacy

Each individual may need the help of an advocate when making or updating his orherpersoncenteredplan.

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EXECUTIVESUMMARY

Thecontext

Over4,000peoplewithdisabilitiesinIrelandliveinthecongregatedsettings,whichwere the subject of this report a residential setting where they live with ten ormorepeople.Notwithstandingthecommitmentandinitiativeofdedicatedstaffandmanagement, the picture that emerged in the course of the work done for thisreportisoneofagroupofpeoplewholiveisolatedlivesapartfromanycommunityand from families; many experience institutional living conditions where they lackbasicprivacyanddignity.Mosthavemultipledisabilitiesandcomplexneeds.

Thebackground

Over a period of 100 years from the 1850s onwards, special residential centres forchildren and adults with intellectual disabilities were set up in Ireland, mainly byreligious orders. From the 1950s, the development of communitybased servicesbegantoemerge,spearheadedbyParentsandFriendsGroups.

Fromthe1980sonwards,thethrustofpolicyandpracticehasbeenmovingsteadilytowards community inclusion for people with disabilities. The emergence of selfadvocacy groups of people with disabilities, with a strong focus on equality,

citizenshipandrightswasakeyfactorinthisadvance.

Public policy in Ireland over the past 20 years has favoured the development ofcommunitybased services; Needs and Abilities,3 the policy for people withintellectual disabilities, published in 1990, made detailed recommendations fordiscontinuingresidentialprovisionthatisnotdomesticinscale.Itproposedarangeofcommunitybasedalternatives,includingformsofadultfostercare,andsupportsforfamiliestoenablethemtomaintaintheirfamilymemberinahomesituation.In1996, the Review Group on Health and Personal Social Services for People withPhysicalandSensoryDisabilities,TowardsanIndependentFuture4alsosignalleda

move away from large institutions, towards small living units and mainstreamhousingprovision.Atthattimetoo,theReportoftheCommissionontheStatusofPeoplewithDisabilitiesAStrategyforEquality(1996),5laidthefoundationfortheNational Disability Strategy.6 The Strategy gives effect to the Governments

3DepartmentofHealth.NeedsandAbilities:APolicyfortheIntellectuallyDisabled.Reportofthe

ReviewGrouponMentalHandicapServices.StationeryOffice,1990.4

DepartmentofHealth.TowardsandIndependentFuture.TheReviewGrouponHealthandPersonalSocialServicesforPeoplewithPhysicalandSensoryDisabilities.StationeryOffice1996.5AStrategyforEquality.ReportoftheCommissionontheStatusofPeoplewithDisabilities(1996)

6NationalDisabilityStrategy(2004)http://.www.dohc.ie/publications/nds_strategy.html.

10
http://.www.dohc.ie/publications/ndshttp://.www.dohc.ie/publications/nds


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mainstreaming policy, which includes the mainstreaming of housing provision forpeoplewithdisabilities.

In response to public policy and investment, the numbers in the congregatedsettingshavebeendeclining,andmostcentreshavemadearrangementstoenable

residentstomovetothecommunity.However,admissionshavecontinued,andovertheperiod19992008,weremarginallyhigherthannumbersleavingthecongregatedsettings.

TheWorkingGrouponcongregatedsettings

In spite of the advances made in moving people from institutional to communitybased settings, 4,000 adults with disabilities continue to reside and live out theirlivesinlargecongregatedsettings. Accommodatingpeopleinthesesettingsclearly

runscountertothestatepolicyofinclusionandfullcitizenship.

In 2007, the HSE set up theWorkingGrouponCongregatedSettings to develop anational plan and change programme for transferring this group of people to thecommunity.TheWorkingGrouphadthefollowingtermsofreferenceandobjectives:

To identify the number of congregated settings and the numbers of peoplecurrentlylivinginthesesettings

To develop a comprehensive profile of the client group in each setting, intermsofnumbers,age,natureofdisabilityandsupportneeds

Toidentifythecostsofthecurrentserviceprovision

To estimate the range of services required in order to provide alternativelivingarrangements

Todevelopaframeworkbasedonbestinternationalpracticeanduptodateresearch to guide the transfer of identified individuals from congregatedsettingstoacommunitybasedsetting

Todevelopanationalplanandchangeprogrammefortransferringpeopletothecommunity

To indicate the likely capital and revenue costs of implementing theprogramme, with particular reference to an assessment of resources,

includingcapitalthatcanberedeployed/reallocated

To detail a communication strategy to disseminate the framework for theprojectandtheproposedimplementationplan.

The Working Group defined congregated settings as settings where ten or morepeoplewithdisabilitieswereliving.

ThevisionandprinciplesguidingtheWorkingGroup

TheWorkingGrouphadaclearvisionforthepeople living incongregatedsettings.That vision requires that this group of people will be actively and effectively

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supported to live full, inclusive livesatthe heartoffamily, community and society.They should be able to exercise meaningful choice, equal to that of other citizens,whenchoosingwhereandwithwhomtheywilllive.

The philosophy of the Working Group is that neither funders nor providers own

peoplewithdisabilitiesnorshouldtheyexercisecontrolovertheirlivesonthebasisthattheyareserviceusers.Peoplewithdisabilitieshavetherighttodirecttheirownlifecourse.

Theworkprogramme

The Working Group undertook a detailed work programme to enable it to makeevidencebased proposals. An indepth survey gathered information about thepeoplecurrentlylivingincongregatedsettings,theirserviceprovisionandtheirlives,and the resources currently being invested in the provision of that service. ThesurveywascomplementedandgivendepththroughaseriesofvisitstocongregatedsettingbytheProjectManagerfortheWorkingGroup.

A review of international research on the costs, benefits and outcomes of deinstitutionalisation and community living was carried out. The experience of othercountries that have undertaken deinstitutionalisation programmes was gatheredthrough study visits to Sweden, England and Wales, and through dialogue withexperts with knowledge of deinstitutionalisation experience in Norway and theUnited States. The challenges, successes and obstacles experienced in thesecountrieshelpedtheWorkingGrouptoframeitsproposals.

Thepeopleandtheplaces

The survey conducted by the Working Group showed that agencies are providingaccommodationincongregatedsettingsacross20counties. Thesettingsrangefromthosewithoneunittoasettingwith34units.26settingsprovideoneunit,withthenumberofplacesineachunitrangingfrom10to52places.Theaveragenumberofplacesinsingleunitsettingsis19.Thelargestcongregatedsettinghas34units,withplacesfor340people.

Just over 4,000 people live in these congregated settings, with slightly more men(52%)thanwomen.Thevastmajorityarepeoplewithintellectualdisabilities.3,759

residentshaveanintellectualdisabilityand297haveaphysicalorsensorydisability.A high proportion of residents have severe or profound intellectual disabilities,considerable levels of challenging behaviour and high levels of multiple disabilities.Many people have significant physical disabilities and an intellectual disability.Residentsaremainlymiddleaged.Abouthalfthosewith intellectualdisabilitiesarein the age range 40 to 60 years. Visits to 30 settings confirmed a picture of similarpopulations in the congregated settings and point to a substantial population of

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people with high levels of dependency, who are ageing and, in some cases, havedementia.

Theresearchfindings

Research studies examined by the Working Group showed conclusively thatcommunitybased services are superior to institutions as places for people withdisabilitiestospendtheirlives.Keyfindingswerethat:

Community livingofferstheprospectofan improved lifestyle andqualityoflifeoverinstitutionalcareforpeoplewithintellectualdisabilities

Thisappliestooldandnewinstitutions,whatevertheyarecalled

Community living is no more expensive than institutional care once thecomparison is made on the basis of comparable needs and comparablequalityofcare

Successfulcommunitylivingrequirescloseattentiontothewayservicesaresetupandrun,especiallythequalityofstaffsupport.

Theresearchunderlinedthatmovingfromcongregatedtocommunitybasedmodelsof accommodation and support is notjust a case of replacing one set of buildingswith another. Successful communitybased support services must be in placecarefully planned around the needs and wishes of individual people and thencontinuallymonitored.

Theinternationalexperience

InternationalexperiencewasexaminedthroughvisitstoSweden,WalesandEnglandandthroughdialoguewithexpertsknowledgeableabouttheNorwegianandtheUSexperience. The examination confirmed that the direction of policy in thesecountries is towards dispersed accommodation in the community and supportedliving. Innovative options, including use of technology to minimise reliance on staffare widening peoples choices and enabling people with complex needs to beindependent. There is a clear move away from clustered accommodation towards

facilitatingpeopletoliveintheirlocalcommunitywithpeopleoftheirownchoosing.

The account of the Norwegian experience drew attention to the risk that themovement to the community can be undermined by absence of rights legislation,diversionoffundingtootherneedygroups,undueinitialfocusonhousingalone,lossofqualifiedprofessionals,andpooroversightandauditingofservices.

The US experience confirmed that everyone can live in the community, and thatpeople with the most severe disabilities make the most gains. It emphasised theimportance of building the capacity of local communities rather than on a narrow

focusonclosinginstitutions.TheUSexperiencealsounderlinestheneedforcareful

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planning,andforputtingindividualisedsupportsinplaceatthetimeofclosureandbeyond.

Thecompellingcaseforaction

Based on the outcomes of the work programme, and the deliberations of themembers, the WorkingGroup took the view that thecasefortaking action nowtoaddress the situation of people living in congregated settings is powerful and

unassailable. The ethical case to move people from isolation to community, and insomecases,fromliveslivedwithoutdignity,isbeyonddebate.

Congregated provision is in breach of Irelands obligations under UN Conventions.The provision contradicts the policy of mainstreaming underpinning the

Governments

National

Disability

Strategy.

We

now

know

what

needs

to

be

done

to

changepeopleslivesandwhytheirlivesmustchange.Thisknowledgebringswithitan obligation to act. The benefits for people with disabilities and the wider socialbenefits from including people with disabilities in their own communityjustify theradicalprogrammeofchangeenvisagedbytheWorkingGroup.

Therecommendations

The Working Groups recommendations are wideranging. Policy initiatives tosupport the transitioning programme are recommended; a new modelof inclusive,

communitybasedsupportforpeoplemovingfromcongregatedsettingsisproposed;Proposals are made for ways of implementing and funding the transitioningprogramme.Theelementsofachangestrategytosupportthetransitioningprocessarealsoidentified. Therecommendationsareasfollows:

National policy and support frameworks for the transitioning

programme(Chapter7)

RECOMMENDATION1(7.2)

DepartmentofHealthandChildrenvisionandpolicystatement

The Department of Health and Childrenshould issue a vision and policy statementon the closure of congregated settings and transition of residents to communitysettings.Thepolicyshouldmandatethat:

Allthoselivingincongregatedsettingswillmovetocommunitysettings

No new congregated settings will be developed and there will be no new

admissionstocongregatedsettings

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Themovetocommunitywillbecompletedwithinsevenyearsandminimumannualtargetssetforeachyearinordertoreachthatgoal.


NationalHousingStrategyforPeoplewithDisabilities

TheWorkingGroupsproposalsshouldbereflectedintheNationalHousingStrategybeing prepared by the Department of Environment, Community and LocalGovernment.The strategy should describe the eligibility of people with disabilities for publiclyfundedhousingsupports.

The Strategy should reflect the research evidence that dispersed housing in the

communityprovidesabetterqualityoflifeforpeoplewithdisabilitiesthanclusterstylehousing.


Nationaloversight

AnamedseniorofficialoftheHSEshouldbechargedwithdrivingandimplementingthe transitioning programme, assisted and guided by a National Implementation

Group. The Department of the Environment, Community and Local GovernmentshouldberepresentedontheNationalImplementationGroup.

ProgressonimplementationshouldbereportedeverysixmonthstotheHSEBoard,to the Department of Health and Children, and also reported to the NationalDisability Strategy Stakeholder Monitoring Group. The housing letting practice inLocal Authorities should be monitored as part of national implementation.


Amanpowerstrategy

Amanpowerstrategytosupporttheprogrammeoftransitiontocommunitysettingsshould be devised by the National Implementation Group in partnership with keystakeholdergroups.Thestrategyshouldaddressstaffingrequirementsandskillmixneeds for community inclusion, skill development and professional developmentrequirements,andthehumanresourceaspectsofthetransitionprogramme.

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NationalProtocolstosupportcommunityinclusion

A Working Group should be set up to coordinate the development of a range of

protocolstoensureacoordinatedapproachtocommunityinclusionforpeoplewithdisabilities. These protocols should be developed across key governmentdepartmentsandagencies,inpartnershipwiththeNationalImplementationGroup;they should be prepared within the framework of the National Disability StrategyandhaveregardtotheSectoralPlanspreparedunderthatStrategy.


Changemanagementprogramme

A changemanagementprogrammeto supportthe transitioning programme shouldbedevelopedand resourced.Thechange managementplanshould beexecuted byHSEandoverseenbytheNationalImplementationGroup.

Moving from congregated settings: A new model of support in the

community(Chapter8).


Anewmodelofcommunitybasedsupport

The provision of accommodation for people moving from congregated settings totheir local community must be broader than a plan for accommodation;accommodationarrangementsforhousingmustbepartofanewmodelofsupportthatintegrateshousingwithsupportedlivingarrangements.

The new model of support should be based on the principles of person

centeredness;

it

should

enable

people

with

disabilities

to

live

in

dispersed

housing,

withsupportstailoredtotheirindividualneed.


Dispersedhousinginthecommunity

All those moving from congregated settings should be provided with dispersedhousinginthecommunity,wheretheymay:

Choosetoliveontheirown

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Sharewithotherswhodonothaveadisability

Sharetheirhomewithotherpeoplewithadisability

Live with their own family or opt for longterm placement with anotherfamily.

Purposebuilt community housing funded by the HSE should be provided for anychildrenunder18yearsoldmovingfromcongregatedsettings.


Maximumoffourresidentswhochoosetoshareaccommodation

Wherehomesharingwithotherpeoplewithadisabilityisthehousingoptionchosenby the individual, the Working Group recommends that the homesharing

arrangement should be confined to no more than four residents in total and thatthosesharingaccommodationhave,asfaraspossible,chosentolivewiththeotherthreepeople.


Supportedlivingarrangements

Supportedlivingarrangementsshouldenablethepersontochooseto:

Decideon,controlandmanagetheirownsupports

Contract with a third party to help with the management of theirindividualisedsupportpackage

Choosetocombineresourceswithotherstopayforsharedsupportsaswellashavingsomepersonalisedsupports.


Supportsforrangeofneeds

Peoplewithdisabilitieslivingindispersedaccommodationincommunitysettingswillneedarangeofsupportprogrammestohelpthemtoplanfortheirlives,andtakeupvaluedsocialroles.Essentialprogrammeswillinclude:

Personcentredplanning

Advocacy

Supportforcommunityinclusion

Inhomesupport

Communitybasedprimarycareandspecialistsupports

Work/furthereducationsupport.

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SupportservicesshouldbefundedbywayofservicelevelagreementsbetweenHSEand providers. Individuals should get their own personal service level agreementwhich outlines who is responsible for delivering each aspect of their supportprovision.

The scope for introducing forms of individualised budgets giving people as muchcontrolaspossibleovertheirchoiceofsupportsshouldbeexaminedbyHSE.The scope for individual or family governed supports should be explored anddeveloped. Such arrangements should be provided for in service level agreementprocesses,tenderingprocessesandotheradministrative/fundingarrangements.

FundingCommunitybasedSupportandHousing:OptionsandCostings

(Chapter9).


Retainallfundingcurrentlybeingspentoncongregatedservices

Funding currently in the system for meeting the needs of people in congregatedsettings should be retained and redeployed to support community inclusion; anysavingsarisingfromthemoveshouldbeusedfornewcommunitybasedservices.

The scope for involving the personnel currently working in congregated settings indelivering community support provision, and how that resource might transfer,should be explored in partnership with stakeholders through the proposedmanpowerstrategy.


The accommodation needs of people moving from congregated settings should bemet through a combination of purchased housing, newbuild housing, leasedhousingorrentedhousing.

The appropriate mix of options would be facilitated via individual housingauthorities, overseen by the Department of Environment, Community and LocalGovernment. It could include housing provided by a housing association, standardlocalauthorityhousing,housingrentedona longtermarrangementfrom aprivatelandlord,orafamilyhome.

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Meetingcapitalcostsofnewhousingstock

Therewillbeinstanceswherepurposebuiltnewhousinginthecommunitytomeet

particularindividualneedswillneedtobebuilt,orpurchasedandmadeaccessible.Whereagenciesprovidingcongregatedsettingsmaybedisposedtoselllandtohelpto fund new accommodation, and need short/medium term financing to enableaccommodationtobebuiltorpurchasedforresidentsbeforepropertyandlandcanbesold,thisshorttermfundingshouldbeprovidedbythestatebywayofloan.


EligibilityforRentSupplement/RentalAccommodationScheme

All those making the transition from congregated settings should be assessed foreligibilityforRentSupplementorRentalAccommodationScheme.Thissubjectneedsdetailed consideration by the Department of Social Protection, Department ofEnvironment,CommunityandLocalGovernment,andtheDepartmentofHealthandChildren.


Local planning for social rented housing for people moving from congregated

settings

A local rehousing plan should be prepared and jointly coordinated by localauthorities and HSE, in collaboration with service providers. The plan should bebasedonbestpracticeinincludingpeoplewithdisabilitiesinlocalcommunitiesandshouldfacilitatedispersedhousingwithpersonalsupports.

All residents in congregated settings should be assessed by housing authorities toestablish their eligibility and need for social housing support. Service Providers

should ensure that their clients are assessed for housing by the relevant localauthority.


Allocationpriorities

Housing authorities should give consideration to reserving a certain proportion ofdwellingsforpeoplewithdisabilities.Asuiteoflettingcriteriaspecifictohousingfor

people

with

disabilities

should

be

developed

and

reflected

in

a

national

protocol.

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Funding,Resourcing,andManaging theTransition to theCommunity

(Chapter10)


Phasingthetransitioningprogramme

Asevenyeartimeframefortheoverallnationalclosureprogrammeforcongregatedsettingsshouldbeset.Withinthattimeframe,specificannualtargetsshouldbesetat national and local level to guide the phasing and prioritising process, inconsultationwiththeHSE.


Localoversight

An implementation team should be set up at Integrated Service Area level withinHSE and a named person given responsibility for supporting the transfer of peopleintothecommunity;thispersonshouldberesponsibleforensuringthatlocalpublicand voluntary services are prepared to respond to the development of acomprehensivecommunitysupportinfrastructure.


Agenciestransitioningstrategyandplan

All agencies currently operating congregated settings should be required to submittheirtransitioningstrategy toHSE,with detailedoperationalplans,timeframesanddeadlines,basedonthereviewrecommendations.AgencyproposalsshouldbepartofannualdiscussionswithHSEinrespectofserviceagreements.


AcceleratedLearningSites

AnumberofAcceleratedLearningSitesshouldbefundedtoprovideambitiousandaccelerated implementation of the policy and robust examples of evidencebasedtransitionstomodelsofcommunityliving.

Thechoiceofsiteswillallowthelearningtobeevaluatedacross:

Statutoryandnonstatutoryservices

Differentlevelsofneed,includingthosewithsevereandprofounddisabilities

orsignificantlevelsofchallengingbehaviour

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Differentgeographicregions

Differentlevelsofcurrentfundingperclient.


CongregatedSettingsFund

A range of new funding streams should be brought together in a CongregatedSettingsFund.TheFundshouldbeavailableto:

Upliftthecorefundinglinkedtoindividualsinsettingscurrentlysurvivingonaverylowfundingbaserelativetoindividualsinothercongregatesettings

Provide interim bridging funding to congregated settings at particularpointsintheirtransitioncycle

Supportambitiousandacceleratedimplementation

Provideemergencyfundinginsettingswhereremedialactionsareneeded

Makeprovisionforadaptationsandassistivetechnology.


NationalEvaluationFramework

A comprehensive evaluation framework for the transitioning project should beagreed at national level to ensure a standardised approach to evaluation across all

Accelerated Learning Projects and other settings involved in transitioning to thecommunity,andanagreedminimumdataset.Theevaluationframeworkshouldbeagreedpriortostartofanyproject.Itshouldbeinformedbysimilarworkconductedinternationally. In order to ensure the integrity of the evaluation in each site, anindependentagentshouldundertakethisevaluationacrossallparticipatingsites.


Creatingreadiness

Resourcesshouldbemadeavailableaspartofthechangemanagementplanningtosupportpeoplewithdisabilities,families,andstafftotransfertothecommunityandtodevelopcommunityreadiness.


Providingaccesstoadvocacy

A dedicated and appropriately resourced advocacy provision should be provided

over the period of the transfer programme for those moving from congregatedsettings.

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ReviewofresidentialsettingsoutsideremitoftheWorkingGroup

The HSE should initiate a review of large residential settings for people withdisabilitieswhichwereoutsidethescopeoftheWorkingGroup,forexample,peopleinappropriatelyplacedinNursingHomes.Theaimofthereviewshouldbetoensurethatresidents in thesesettingscanaccesscommunitybasedsupportand inclusion,inlinewiththeWorkingGroupsproposalsforresidentsofcongregatedsettings.

A number of people with disabilities are still living in mental health settings, andtheir accommodation and support needs fall within the remit ofVisionforChangeproposals. The Working Group recommends that this group should be given toppriority in the Vision for Change implementation process and be moved to

appropriatecommunitysettingsinlinewiththerecommendationsinthisReport.

Over4,000peoplewithdisabilitiesinIrelandliveinthecongregatedsettings,whichwere the subject of this report a residential setting where they live with ten ormorepeople.Notwithstandingthecommitmentandinitiativeofdedicatedstaffandmanagement, the picture that emerged in the course of the work done for thisreportisoneofagroupofpeoplewholiveisolatedlivesapartfromanycommunityand from families; many experience institutional living conditions where they lackbasicprivacyanddignity.Mosthavemultipledisabilitiesandcomplexneeds.

Thebackground

Over a period of 100 years from the 1850s onwards, special residential centres forchildren and adults with intellectual disabilities were set up in Ireland, mainly byreligious orders. From the 1950s, the development of communitybased servicesbegantoemerge,spearheadedbyParentsandFriendsGroups.

Fromthe1980sonwards,thethrustofpolicyandpracticehasbeenmovingsteadilytowards community inclusion for people with disabilities. The emergence of self

advocacy groups of people with disabilities, with a strong focus on equality,citizenshipandrightswasakeyfactorinthisadvance.

Public policy in Ireland over the past 20 years has favoured the development ofcommunitybased services; Needs and Abilities,7 the policy for people withintellectual disabilities, published in 1990, made detailed recommendations fordiscontinuingresidentialprovisionthatisnotdomesticinscale.Itproposedarangeofcommunitybasedalternatives,includingformsofadultfostercare,andsupportsforfamiliestoenablethemtomaintaintheirfamilymemberinahomesituation.In

7DepartmentofHealth.NeedsandAbilities:APolicyfortheIntellectuallyDisabled.ReportoftheReviewGrouponMentalHandicapServices.StationeryOffice,1990.

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1996, the Review Group on Health and Personal Social Services for People withPhysicalandSensoryDisabilities,TowardsanIndependentFuture8alsosignalledamove away from large institutions, towards small living units and mainstreamhousingprovision.Atthattimetoo,theReportoftheCommissionontheStatusofPeoplewithDisabilitiesAStrategyforEquality(1996),9laidthefoundationforthe

National Disability Strategy.10 The Strategy gives effect to the Governmentsmainstreaming policy, which includes the mainstreaming of housing provision forpeoplewithdisabilities.

In response to public policy and investment, the numbers in the congregatedsettingshavebeendeclining,andmostcentreshavemadearrangementstoenableresidentstomovetothecommunity.However,admissionshavecontinued,andovertheperiod19992008,weremarginallyhigherthannumbersleavingthecongregatedsettings.

TheWorkingGrouponcongregatedsettings

In spite of the advances made in moving people from institutional to communitybased settings, 4,000 adults with disabilities continue to reside and live out theirlivesinlargecongregatedsettings. Accommodatingpeopleinthesesettingsclearlyrunscountertothestatepolicyofinclusionandfullcitizenship.

In 2007, the HSE set up theWorkingGrouponCongregatedSettings to develop anational plan and change programme for transferring this group of people to the

community.TheWorkingGrouphadthefollowingtermsofreferenceandobjectives:





Todevelopaframeworkbasedonbestinternationalpracticeanduptodate

research to guide the transfer of identified individuals from congregatedsettingstoacommunitybasedsetting


8DepartmentofHealth.TowardsandIndependentFuture.TheReviewGrouponHealthand

PersonalSocialServicesforPeoplewithPhysicalandSensoryDisabilities.StationeryOffice1996.9AStrategyforEquality.ReportoftheCommissionontheStatusofPeoplewithDisabilities(1996)

10NationalDisabilityStrategy(2004)http://.www.dohc.ie/publications/nds_strategy.html.

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To indicate the likely capital and revenue costs of implementing theprogramme, with particular reference to an assessment of resources,includingcapitalthatcanberedeployed/reallocated


The Working Group defined congregated settings as settings where ten or morepeoplewithdisabilitieswereliving.

ThevisionandprinciplesguidingtheWorkingGroup

TheWorkingGrouphadaclearvisionforthepeople living incongregatedsettings.That vision requires that this group of people will be actively and effectivelysupported to live full, inclusive livesatthe heartoffamily, community and society.They should be able to exercise meaningful choice, equal to that of other citizens,whenchoosingwhereandwithwhomtheywilllive.

The philosophy of the Working Group is that neither funders nor providers ownpeoplewithdisabilitiesnorshouldtheyexercisecontrolovertheirlivesonthebasisthattheyareserviceusers.Peoplewithdisabilitieshavetherighttodirecttheirownlifecourse.

Theworkprogramme

The Working Group undertook a detailed work programme to enable it to makeevidencebased proposals. An indepth survey gathered information about thepeoplecurrentlylivingincongregatedsettings,theirserviceprovisionandtheirlives,and the resources currently being invested in the provision of that service. ThesurveywascomplementedandgivendepththroughaseriesofvisitstocongregatedsettingbytheProjectManagerfortheWorkingGroup.

A review of international research on the costs, benefits and outcomes of deinstitutionalisation and community living was carried out. The experience of othercountries that have undertaken deinstitutionalisation programmes was gatheredthrough study visits to Sweden, England and Wales, and through dialogue withexperts with knowledge of deinstitutionalisation experience in Norway and theUnited States. The challenges, successes and obstacles experienced in thesecountrieshelpedtheWorkingGrouptoframeitsproposals.

Thepeopleandtheplaces

The survey conducted by the Working Group showed that agencies are providingaccommodationincongregatedsettingsacross20counties. Thesettingsrangefromthosewithoneunittoasettingwith34units.26settingsprovideoneunit,withthe

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numberofplacesineachunitrangingfrom10to52places.Theaveragenumberofplacesinsingleunitsettingsis19.Thelargestcongregatedsettinghas34units,withplacesfor340people.

Just over 4,000 people live in these congregated settings, with slightly more men

(52%)thanwomen.Thevastmajorityarepeoplewithintellectualdisabilities.3,759

residentshaveanintellectualdisabilityand297haveaphysicalorsensorydisability.A high proportion of residents have severe or profound intellectual disabilities,considerable levels of challenging behaviour and high levels of multiple disabilities.Many people have significant physical disabilities and an intellectual disability.Residentsaremainlymiddleaged.Abouthalfthosewith intellectualdisabilitiesarein the age range 40 to 60 years. Visits to 30 settings confirmed a picture of similarpopulations in the congregated settings and point to a substantial population ofpeople with high levels of dependency, who are ageing and, in some cases, havedementia.

Theresearchfindings

Research studies examined by the Working Group showed conclusively thatcommunitybased services are superior to institutions as places for people withdisabilitiestospendtheirlives.Keyfindingswerethat:

Community livingofferstheprospectofan improved lifestyle andqualityoflifeoverinstitutionalcareforpeoplewithintellectualdisabilities

Thisappliestooldandnewinstitutions,whatevertheyarecalled

Community living is no more expensive than institutional care once thecomparison is made on the basis of comparable needs and comparablequalityofcare

Successfulcommunitylivingrequirescloseattentiontothewayservicesaresetupandrun,especiallythequalityofstaffsupport.

Theresearchunderlinedthatmovingfromcongregatedtocommunitybasedmodelsof accommodation and support is notjust a case of replacing one set of buildingswith another. Successful communitybased support services must be in place

carefully planned around the needs and wishes of individual people and thencontinuallymonitored.

Theinternationalexperience

InternationalexperiencewasexaminedthroughvisitstoSweden,WalesandEnglandandthroughdialoguewithexpertsknowledgeableabouttheNorwegianandtheUSexperience. The examination confirmed that the direction of policy in thesecountries is towards dispersed accommodation in the community and supported

living. Innovative options, including use of technology to minimise reliance on staff

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are widening peoples choices and enabling people with complex needs to beindependent. There is a clear move away from clustered accommodation towardsfacilitatingpeopletoliveintheirlocalcommunitywithpeopleoftheirownchoosing.

The account of the Norwegian experience drew attention to the risk that the

movement to the community can be undermined by absence of rights legislation,diversionoffundingtootherneedygroups,undueinitialfocusonhousingalone,lossofqualifiedprofessionals,andpooroversightandauditingofservices.

The US experience confirmed that everyone can live in the community, and thatpeople with the most severe disabilities make the most gains. It emphasised theimportance of building the capacity of local communities rather than on a narrowfocusonclosinginstitutions.TheUSexperiencealsounderlinestheneedforcarefulplanning,andforputtingindividualisedsupportsinplaceatthetimeofclosureandbeyond.

Thecompellingcaseforaction

Based on the outcomes of the work programme, and the deliberations of themembers, the WorkingGroup took the view that thecasefortaking action nowtoaddress the situation of people living in congregated settings is powerful and

unassailable. The ethical case to move people from isolation to community, and insomecases,fromliveslivedwithoutdignity,isbeyonddebate.

Congregated provision is in breach of Irelands obligations under UN Conventions.The provision contradicts the policy of mainstreaming underpinning theGovernmentsNationalDisabilityStrategy.Wenowknowwhatneedstobedonetochangepeopleslivesandwhytheirlivesmustchange.Thisknowledgebringswithitan obligation to act. The benefits for people with disabilities and the wider socialbenefits from including people with disabilities in their own communityjustify theradicalprogrammeofchangeenvisagedbytheWorkingGroup.

Therecommendations

The Working Groups recommendations are wideranging. Policy initiatives tosupport the transitioning programme are recommended; a new modelof inclusive,communitybasedsupportforpeoplemovingfromcongregatedsettingsisproposed;Proposals are made for ways of implementing and funding the transitioningprogramme.Theelementsofachangestrategytosupportthetransitioningprocessarealsoidentified. Therecommendationsareasfollows:

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National policy and support frameworks for the transitioning

programme(Chapter7)


DepartmentofHealthandChildrenvisionandpolicystatement

The Department of Health and Childrenshould issue a vision and policy statementon the closure of congregated settings and transition of residents to communitysettings.Thepolicyshouldmandatethat:

Allthoselivingincongregatedsettingswillmovetocommunitysettings

No new congregated settings will be developed and there will be no new

admissionstocongregatedsettings Themovetocommunitywillbecompletedwithinsevenyearsandminimum

annualtargetssetforeachyearinordertoreachthatgoal.


NationalHousingStrategyforPeoplewithDisabilities

TheWorkingGroupsproposalsshouldbereflectedintheNationalHousingStrategy

being

prepared

by

the

Department

of

Environment,

Community

and

Local

Government.The strategy should describe the eligibility of people with disabilities for publiclyfundedhousingsupports.

The Strategy should reflect the research evidence that dispersed housing in thecommunityprovidesabetterqualityoflifeforpeoplewithdisabilitiesthanclusterstylehousing.


Nationaloversight

AnamedseniorofficialoftheHSEshouldbechargedwithdrivingandimplementingthe transitioning programme, assisted and guided by a National ImplementationGroup. The Department of the Environment, Community and Local GovernmentshouldberepresentedontheNationalImplementationGroup.

ProgressonimplementationshouldbereportedeverysixmonthstotheHSEBoard,to the Department of Health and Children, and also reported to the National

Disability Strategy Stakeholder Monitoring Group. The housing letting practice in

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Local Authorities should be monitored as part of national implementation.


Amanpowerstrategy

Amanpowerstrategytosupporttheprogrammeoftransitiontocommunitysettingsshould be devised by the National Implementation Group in partnership with keystakeholdergroups.Thestrategyshouldaddressstaffingrequirementsandskillmixneeds for community inclusion, skill development and professional developmentrequirements,andthehumanresourceaspectsofthetransitionprogramme.


NationalProtocolstosupportcommunityinclusion

A Working Group should be set up to coordinate the development of a range ofprotocolstoensureacoordinatedapproachtocommunityinclusionforpeoplewithdisabilities. These protocols should be developed across key governmentdepartmentsandagencies,inpartnershipwiththeNationalImplementationGroup;they should be prepared within the framework of the National Disability StrategyandhaveregardtotheSectoralPlanspreparedunderthatStrategy.


Changemanagementprogramme

A changemanagementprogrammeto supportthe transitioning programme shouldbedevelopedand resourced.Thechange managementplanshould beexecuted byHSEandoverseenbytheNationalImplementationGroup.

Moving from congregated settings: A new model of support in the

community

(Chapter

8).


Anewmodelofcommunitybasedsupport

The provision of accommodation for people moving from congregated settings totheir local community must be broader than a plan for accommodation;accommodationarrangementsforhousingmustbepartofanewmodelofsupportthatintegrateshousingwithsupportedlivingarrangements.

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The new model of support should be based on the principles of personcenteredness; it should enable people with disabilities to live in dispersed housing,withsupportstailoredtotheirindividualneed.


Dispersedhousinginthecommunity

All those moving from congregated settings should be provided with dispersedhousinginthecommunity,wheretheymay:

Choosetoliveontheirown

Sharewithotherswhodonothaveadisability

Sharetheirhomewithotherpeoplewithadisability

Live with their own family or opt for longterm placement with anotherfamily.

Purposebuilt community housing funded by the HSE should be provided for anychildrenunder18yearsoldmovingfromcongregatedsettings.


Maximumoffourresidentswhochoosetoshareaccommodation

Wherehomesharingwithotherpeoplewithadisabilityisthehousingoptionchosenby the individual, the Working Group recommends that the homesharingarrangement should be confined to no more than four residents in total and thatthosesharingaccommodationhave,asfaraspossible,chosentolivewiththeotherthreepeople.


Supportedlivingarrangements

Supportedlivingarrangementsshouldenablethepersontochooseto:

Decideon,controlandmanagetheirownsupports

Contract with a third party to help with the management of theirindividualisedsupportpackage

Choosetocombineresourceswithotherstopayforsharedsupportsaswellashavingsomepersonalisedsupports.

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Supportsforrangeofneeds

Peoplewithdisabilitieslivingindispersedaccommodationincommunitysettingswill

needarangeofsupportprogrammestohelpthemtoplanfortheirlives,andtakeupvaluedsocialroles.Essentialprogrammeswillinclude:

Personcentredplanning

Advocacy

Supportforcommunityinclusion

Inhomesupport

Communitybasedprimarycareandspecialistsupports

Work/furthereducationsupport.


Strengtheningaccesstocommunityhealthservices

ActionisrequiredbyHSEtostrengthenthecapacityofcommunityhealthservicestodeliversupportstopeoplewithdisabilities.


Distinctstatutoryresponsibilitiesforaspectsofprovision

ThehousingauthoritiesandHSEshouldhavedistinctresponsibilitiesfortheneedsofpeoplewithdisabilitieslivinginthecommunity.

TheHSEshouldprovideforthehealthandpersonalsocialneedsofresidentsmovingto the community while responsibility for housing rests with the Department ofEnvironment,CommunityandLocalGovernmentandlocalauthorities.


Separationofdeliveryofinhomesupportsfrominclusionsupports

Governance, management and delivery of inhome supports should be separatefromprovisionofinclusionsupports,toensurethatthepersonwithadisabilityhasmaximumchoiceofsupportprovidersandmaximumindependence.


Coordinationofsupportprovision

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Theindividualisedsupportsforpeoplewithdisabilitiesshouldbedeliveredthroughacoordinating local structure based on defined HSE catchment areas, within whichthefullrangeofsupportsisavailable.


Fundingmechanismsforpersonalsupports

AstudyofthefeasibilityofintroducingtenderingforservicesshouldbeundertakenbyHSE,toexamineitspotentialinanIrishcontext.

SupportservicesshouldbefundedbywayofservicelevelagreementsbetweenHSEand providers. Individuals should get their own personal service level agreementwhich outlines who is responsible for delivering each aspect of their support

provision.

The scope for introducing forms of individualised budgets giving people as muchcontrolaspossibleovertheirchoiceofsupportsshouldbeexaminedbyHSE.The scope for individual or family governed supports should be explored anddeveloped. Such arrangements should be provided for in service level agreementprocesses,tenderingprocessesandotheradministrative/fundingarrangements.

FundingCommunitybasedSupportandHousing:OptionsandCostings

(Chapter9).


Retainallfundingcurrentlybeingspentoncongregatedservices

Funding currently in the system for meeting the needs of people in congregatedsettings should be retained and redeployed to support community inclusion; anysavingsarisingfromthemoveshouldbeusedfornewcommunitybasedservices.

The scope for involving the personnel currently working in congregated settings indelivering community support provision, and how that resource might transfer,should be explored in partnership with stakeholders through the proposedmanpowerstrategy.


The accommodation needs of people moving from congregated settings should be

met through a combination of purchased housing, newbuild housing, leasedhousingorrentedhousing.

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The appropriate mix of options would be facilitated via individual housingauthorities, overseen by the Department of Environment, Community and LocalGovernment. It could include housing provided by a housing association, standardlocalauthorityhousing,housingrentedona longtermarrangementfrom aprivate

landlord,orafamilyhome.


Meetingcapitalcostsofnewhousingstock

Therewillbeinstanceswherepurposebuiltnewhousinginthecommunitytomeetparticularindividualneedswillneedtobebuilt,orpurchasedandmadeaccessible.Whereagenciesprovidingcongregatedsettingsmaybedisposedtoselllandtohelp

to fund new accommodation, and need short/medium term financing to enableaccommodationtobebuiltorpurchasedforresidentsbeforepropertyandlandcanbesold,thisshorttermfundingshouldbeprovidedbythestatebywayofloan.


EligibilityforRentSupplement/RentalAccommodationScheme

All those making the transition from congregated settings should be assessed for

eligibilityforRentSupplementorRentalAccommodationScheme.Thissubjectneedsdetailed consideration by the Department of Social Protection, Department ofEnvironment,CommunityandLocalGovernment,andtheDepartmentofHealthandChildren.


Local planning for social rented housing for people moving from congregated

settings

A local rehousing plan should be prepared and jointly coordinated by localauthorities and HSE, in collaboration with service providers. The plan should bebasedonbestpracticeinincludingpeoplewithdisabilitiesinlocalcommunitiesandshouldfacilitatedispersedhousingwithpersonalsupports.

All residents in congregated settings should be assessed by housing authorities toestablish their eligibility and need for social housing support. Service Providersshould ensure that their clients are assessed for housing by the relevant localauthority.

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Allocationpriorities

Housing authorities should give consideration to reserving a certain proportion of

dwellingsforpeoplewithdisabilities.Asuiteoflettingcriteriaspecifictohousingforpeoplewithdisabilitiesshouldbedevelopedandreflectedinanationalprotocol.

Funding,Resourcing,andManaging theTransition to theCommunity

(Chapter10)


Phasingthetransitioningprogramme

Asevenyeartimeframefortheoverallnationalclosureprogrammeforcongregatedsettingsshouldbeset.Withinthattimeframe,specificannualtargetsshouldbesetat national and local level to guide the phasing and prioritising process, inconsultationwiththeHSE.


Localoversight

An implementation team should be set up at Integrated Service Area level withinHSE and a named person given responsibility for supporting the transfer of peopleintothecommunity;thispersonshouldberesponsibleforensuringthatlocalpublicand voluntary services are prepared to respond to the development of acomprehensivecommunitysupportinfrastructure.


Agenciestransitioningstrategyandplan

All agencies currently operating congregated settings should be required to submittheirtransitioningstrategy toHSE,with detailedoperationalplans,timeframesanddeadlines,basedonthereviewrecommendations.AgencyproposalsshouldbepartofannualdiscussionswithHSEinrespectofserviceagreements.


AcceleratedLearningSites

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AnumberofAcceleratedLearningSitesshouldbefundedtoprovideambitiousandaccelerated implementation of the policy and robust examples of evidencebasedtransitionstomodelsofcommunityliving.

Thechoiceofsiteswillallowthelearningtobeevaluatedacross:

Statutoryandnonstatutoryservices

Differentlevelsofneed,includingthosewithsevereandprofounddisabilitiesorsignificantlevelsofchallengingbehaviour

Differentgeographicregions

Differentlevelsofcurrentfundingperclient.


CongregatedSettingsFund

A range of new funding streams should be brought together in a CongregatedSettingsFund.TheFundshouldbeavailableto:

Upliftthecorefundinglinkedtoindividualsinsettingscurrentlysurvivingonaverylowfundingbaserelativetoindividualsinothercongregatesettings

Provide interim bridging funding to congregated settings at particularpointsintheirtransitioncycle

Supportambitiousandacceleratedimplementation

Provideemergencyfundinginsettingswhereremedialactionsareneeded

Makeprovisionforadaptationsandassistivetechnology.


NationalEvaluationFramework

A comprehensive evaluation framework for the transitioning project should beagreed at national level to ensure a standardised approach to evaluation across allAccelerated Learning Projects and other settings involved in transitioning to thecommunity,andanagreedminimumdataset.Theevaluationframeworkshouldbe

agreedpriortostartofanyproject.Itshouldbeinformedbysimilarworkconductedinternationally. In order to ensure the integrity of the evaluation in each site, anindependentagentshouldundertakethisevaluationacrossallparticipatingsites.


Creatingreadiness

Resources should be made available as part of the change management planning to

support people with disabilities, families, and staff to transfer to the community and todevelop community readiness.

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Providingaccesstoadvocacy

A dedicated and appropriately resourced advocacy provision should be providedover the period of the transfer programme for those moving from congregatedsettings.


ReviewofresidentialsettingsoutsideremitoftheWorkingGroup

The HSE should initiate a review of large residential settings for people with

disabilitieswhichwereoutsidethescopeoftheWorkingGroup,forexample,peopleinappropriatelyplacedinNursingHomes.Theaimofthereviewshouldbetoensurethatresidents in thesesettingscanaccesscommunitybasedsupportand inclusion,inlinewiththeWorkingGroupsproposalsforresidentsofcongregatedsettings.

A number of people with disabilities are still living in mental health settings, andtheir accommodation and support needs fall within the remit ofVisionforChangeproposals. The Working Group recommends that this group should be given toppriority in the Vision for Change implementation process and be moved toappropriatecommunitysettingsinlinewiththerecommendationsinthisReport.

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PARTONE

THECASEFORACTION

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CHAPTER1

INTRODUCTION

1.1 THEWORKINGGROUPONCONGREGATEDSETTINGS

In2007,theHSEsetuptheWorkingGrouponCongregatedSettings.Thepurposeofthe Working Group was to develop proposals and a plan to deliver communitybased, personcentred responses for people living in congregated settings. TheWorkingGrouphadthefollowingtermsofreferenceandkeyobjectives:





Todevelopaframeworkbasedonbestinternationalpracticeanduptodateresearch to guide the transfer of identified individuals from congregatedsettingstoacommunitybasedsetting


To indicate the likely capital and revenue costs of implementing theprogramme, with particular reference to an assessment of resourcesincludingcapitalthatcanberedeployed/reallocated


1.2

THE

MEMBERSHIP

OF

THE

WORKING

GROUP

The membership of the Working Group was made up of representatives of keystakeholders including voluntary and statutory service providers, representativesandadvocatesforpeoplewithdisabilities,theNationalDisabilityAuthorityandtheDepartment of Health and Children. The project was led by Pat Dolan, HSE, andmanagedbyChristieLynch,CEOoftheKareAssociation,Kildare,whowassecondedtomanagetheprojectonafulltimebasis. Thememberswere:

Pat Dolan, Local Health Manager, Sligo/Leitrim and West Cavan and Lead

LHM

Disabilities,

HSE

West

(Chair

and

Project

Leader)

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ChristyLynch,ChiefExecutiveOfficer,Kare,CoKildare(CongregatedSettingsProjectManager)

BrendanBroderick,CEO,MooreAbbey,Co.Kildare

MarkBlakeKnox,BoardMember,NotforProfitBusinessAssociationandCEOCheshireIreland

DeirdreCarroll,CEO,InclusionIreland

Brian Dowling, Assistant Principal Officer, Disabilities, Department of HealthandChildren

Eithne Fitzgerald, Head of Policy and Public Affairs, National DisabilityAuthority

Paudie Galvin, Acting Director of Services, Southside Intellectual DisabilityServices,HSEDublinMidLeinster

MaryMcArdle,RegionalDirectorofNursingHSENorthEast*

BrotherLaurenceKearnsOH,Provincial,StJohnofGodHospitallerServices

SuzanneMoloney,AreaManager,DisabilityServices,HSESouth**

MartinNaughton,DisabilityFederationofIreland

WinifredOHanrahan,NationalDirectorofServices,BrothersofCharity

JeanWright,SelfAdvocatewithintellectualdisabilities

*MemberofWorkingGroupuntilMarch2009** Replaced by Patrick Nelligan, Assistant Manager Intellectual Disability Services,HSESouth,fromNovember2009.

1.3

THESCOPEOFTHEPROJECT

Theprojectwasconcernedwithall individualswith intellectual,physical orsensorydisabilities living in larger congregated settings. Larger congregated settings weredefined for the purpose of the project as living arrangements where tenormorepeopleshareasinglelivingunitorwherethelivingarrangementsarecampusbased.

Using this definition and working closely with the Health Research Board, whichmanages the national databases for disability services, the Working Group wasprovidedwithalistofagencieswhoseresidentswouldcomewithinthescopeofthe

project.11

Residential services that were not on the national databases, such asresidential services for people with autism were not included in the project.Intentionalcommunities12werenotincluded.

11SeeAppendix1forlistofagenciesthatcamewithintheWorkingGroupsremit.

12Anintentionalcommunityisaplannedresidentialcommunitydesignedtopromoteamuchhigher

degreeofsocialinteractionthanothercommunities.Themembersofanintentionalcommunitytypicallyholdacommonsocial,cultural,politicalorspiritualvision.Theyalsoshareresponsibilityandresources.Intentionalcommunitiesincludecohousing,residentiallandtrusts,communes,ecovillagesandhousingcooperatives.(www.wikipedia.org).IntheIrishcontext,intentionalcommunitiesincludeCamphillCommunityandLArcheCommunity.

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People living inunitsdedesignatedundereithertheMentalTreatmentAct1945or

theMentalHealthAct2001wereincludedinthescopeoftheproject.Thetermdedesignated unit usually refers to accommodation on the grounds of psychiatric

hospitals.Thededesignatedunitsarededicatedintellectualdisabilityserviceswitha

separatemanagementstructuretothepsychiatricservicesonthesamecampus. The

clientslivingindedesignatedunitsareincludedontheNationalDisabilityDatabase.

People living in mentalhealth service settings that are not dedesignated were notincluded, as their needs are due to be addressed as part of the implementation ofthe national policy on mental health services set out in the Visionfor Change.13People with disabilities living in nursing homes were also outside the WorkingGroupsremit.

1.4 THEVISIONFORTHEFUTURE

TheWorkingGroupsetdown aclear visionforthe kind of life that people living incongregated settings should be able to aspire to in the future. The philosophyunderpinning the vision is that neither funders nor providers own people withdisabilitiesnorshouldtheyexercisecontrolovertheirlivesonthebasisthattheyareserviceusers.Peoplewithdisabilitieshavetherighttodirecttheirownlifecourse.

Thefollowingvisionstatementservedasaguideandfocusforthework:

All individuals currently residing in congregated settings will have the

opportunity/righttomovetoahomeoftheirchoiceinthecommunity.Theywillbe

providedwiththe individualisedsupportsrequiredtoensureanenhancedqualityof

lifethroughmaximumcommunityparticipation.

Indeliveringthisvisiontheprocessmustensureeachindividualsrightto:

Choose,receiveanddirecttheservicesandsupportstheyneed

Participateinfamilyandcommunity

Beindependentandmakeindividualchoices

Havetheopportunitytomaximisetheirfullpotential

Receiveoutcomebasedservicesandsupports

Betreatedwithrespectanddignity

Beassuredoftheirhealthandsafety

1.5 THEPRINCIPLESANDASSUMPTIONSGUIDINGTHEWORK

13DepartmentofHealthandChildren.VisionforChange:ReportoftheExpertGrouponMentalHealthPolicy.StationeryOffice,2006.

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Within the framework of the vision statement, the Working Group developedassumptionsandprinciplestoguidetheirapproach.TheWorkingGroupagreedthat:

Allpeoplewithdisabilitiescanlivewithadequatesupport,inanordinaryhome,inarangeoftypicalneighbourhoodsettings

Proposals would be guided by the principles enshrined in the UNConventionontheRightsofPeoplewithDisabilities

The focus would be on planning for communitybased, personcentredresponsesforpeoplecurrentlylivingincongregatedsettings

The plan would focus positively on achieving the vision rather than onlyondeinstitutionalisation

Evidencebased best practice in the field would underpin all proposeddevelopments

Therightsandqualityoflifeofcitizenswithdisabilitiesisprimaryandthe

planstimeframeandfundingwillbebasedonthis The plan would be open to new, creative and innovative responses to

meetingindividualneeds

Maximumparticipationofallstakeholdersinthedevelopmentoftheplanwouldbeencouragedthroughacomprehensiveconsultationprocess

Particular attention would be given to ensure the views of service usersareincluded

The knowledge, expertise and commitment of staff that currently existswithinserviceswouldberespected.

Theplanwouldberealisticaboutthetimeframerequiredtoeffectsucha

changeandcostassociatedwithsame; The plan would take account of the complexity of the issue of cost,

includinganytransitionalcostsshouldtheyarise

The plan would advise on the system infrastructure required to managethischange.

Theuseofcurrentresourceswillbemaximised

Theagenciesarecommittedtoimplementtheagreedframework.

1.6 THEWORKPROGRAMME

Thekeyelements of the work programme undertaken bytheWorking Group wereasfollows:

Learningaboutthecurrentsituation:collectinginformationaboutthepeoplecurrentlyincongregatedsettings,andtheirlives

Learning from research: reviewing the literature on the transfer of peoplefromcongregatedtocommunitysettingsandidentifyingkeyfindings

Learningfrominternationalexperience.

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Learningaboutthecurrentsituation:visitsandsurvey(Chapter3)

The Working Group wanted a clear understanding of the group of people living inlargercongregatedsettingsandacomprehensiveprofileoftheirsituationsothat arealistic and appropriate plan could be brought to Government. The mechanismsusedwere(i)visitsto largerfacilitiesbytheProjectManagerand(ii)asurveyofallcongregatedsettingsthatfellwithinthescopeoftheproject.

Visits to 30 congregated settings enabled the Project Manager to meet withmanagement,staffandresidentsandseeatfirsthandthenatureofthefacilitiesandservicesavailabletoresidents.Thevisitsalsoprovidedanopportunitytolearnaboutthe work and the planning that has been done by organisations that are movingpeopleoutofcongregatedsettingstothecommunity.

Data collection was undertaken by means of a survey of residential centres, which

complemented the qualitative information gathered through visits by the ProjectManager. The nationwide data collection commenced in early August 2008, givingagencies a fiveweek period to return completed questionnaires. Financial datacollected related to audited accounts for 2005/2006. All centres contactedrespondedtothesurvey.

Learningfromresearch

Areviewoftheresearchliteratureonlivingarrangementsforpeoplewithdisabilitieswasundertakentoguidethepreparationofproposals.Theliteraturereviewlookedat evidence from studies about the impact of institutional living compared tocommunity living on important aspects of peoples lives, including choicemakingand self determination, community involvement, social networks, friendships andrelationships. It also looked at the relative impact of different forms of livingarrangements, and, in particular, the differential impact of campus or clusterstylehousingcomparedtodispersedcommunityliving.

Thelearningfrominternationalexperience

The transfer of people with disabilities from congregated settings to communitylivinghasbeenaddressedinmanyjurisdictionsoveraperiodofmanyyears.Itwasimportanttolearnfromtheseexperiences,andtolearnfromthingsthatdidnotgowell,aswellassuccesses.

The main mechanism for gathering the learning from international practice was aseries of study visits to agencies in Wales, London and Sweden and a Round Tablewith experts in the field,14 hosted by the National Disability Authority (NDA). The

14NDARoundTableonDeinstitutionalisation:MovingtheAgendaForward.December2007.

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agencies visited were selected based on recommendations arising from ongoingresearchbeingconductedbytheNDA;theservicesvisitedhadsignificantexperienceinprovidinghighqualitycommunitybasedservicesasanalternativetocongregatedsettings.Inadditiontositevisits,theProjectManagermadecontactwithexpertsinthe United States, Canada and the UK, with a view to gathering more information

abouttheexperiencesthere.

Elicitingtheviewsofstakeholders

The Working Group was committed to consulting stakeholders, and to payingparticular attention to hearing the voice of service users. The membership of theWorking Group was constructed to be broadly reflective of key stakeholders. Inparticular, to ensure that the service user perspective would influence the ongoingwork of the group and its proposals, Jean Wright, selfadvocate with intellectualdisabilitiesandMartinNaughton,DisabilityFederationof Ireland,werecooptedtothe Working Group at an early point. The visits by the Project Manager to a widecrosssectionofcongregatedsettingsprovidedanopportunitytoheartheviewsandexperiencesofstaffandmanagementinthosecentres.

1.7 THEREPORT

PartOneoftheReport(Chapters16)setsoutthecaseforurgentactiontoenablethe4,000peoplelivinginthecongregatedsettingscoveredbytheWorkingGroupsReporttomovetoliveinlocalcommunities.

In Chapter 2 of the Report, the policy and legislative background to provision ofresidential services in Ireland is outlined. Chapter 3 gives an account of thepopulation of people in the 72 congregated settings covered by the Report, andimportant aspects of their lives, based on the programme of visits and a detailedsurveyconductedbytheWorkingGroup.

Chapter 4 summarises a review of research literature on living arrangements forpeoplewithdisabilities.Theliteraturereviewlookedatevidencefromstudiesabout

theimpactofinstitutionallivingcomparedtocommunitylivingonimportantaspectsof peoples lives and pointed to the compelling evidence that dispersed housing inthe community delivers a better quality of life for people with disabilities thanclusteredhousing.

Chapter5givesanoverviewofthelearninggatheredbytheWorkingGroupfromanumberofjurisdictionsabouttheexperienceoftransferringpeoplewithdisabilitiesfrom congregated settings to community living. Key features of the approachesadopted in these countries are described, as well as factors that supported orimpededsuccessfultransitioning.

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Chapter 6 draws together the compelling case for taking action now to enablepeopleincongregatedsettingstomakethetransitiontoanewlifeaspartofalocalcommunity. This chapter outlines the Irish and international policy and legislativeimperatives for change, as well as the ethical and economic arguments. While thechallenges are recognised, the case is made that the longterm benefits for people

with disabilities and for society outweigh the challenges andjustify the radicalprogrammeofchangebeingproposed.

WeMovedOn:StoriesofSuccessfulTransitionstoLifeintheCommunitydescribesthe life experience of people with disabilities who have made successful transitionfromlifeinacongregatedsettingtolivingintheirlocalcommunity.

PartTwo (Chapters 711) of the Report outlines the strategy for action to enableeveryonecurrentlylivinginacongregatedsettingtomovetothecommunitywithinasevenyeartimeframe.

Chapter7setsoutanoverarchingnationalframeworkforthetransitioningprocess.It proposes essential policy developments, a national housing strategy for peoplewith disabilities, and arrangements for national oversight of progress towardsimplementation of Report recommendations. It makes recommendations for amanpower strategy, interdepartmental protocols, and a national changemanagementprogrammetoassisttheimplementationprocess.

Chapter8proposesaradicalnewmodelofprovisionbasedonprinciplesofpersoncenteredness. The model envisages that all housing for people moving from

congregated settings should be in ordinary neighbourhoods (dispersed housing) inthe community, provided mostly by housing authorities; each person should haveaccess to a range of individualised supports to enable them to live in the home oftheir choice and be included in the community. The differing responsibilities ofhealthserviceprovidersandhousingauthoritiesinthenewmodelareoutlined.

Chapter 9 describes a funding strategy for communitybased support and housing.The costs of ongoing support provision in the new model are examined, and thecostsofsupplyingthehousingneedsofthoseleavingcongregatedsettingsthroughamixofhousingoptionsthatincludepurchasedhousing,newbuildhousing,leasedor

rentedhousing.

Chapter 10 focuses on the arrangements for enabling the 4,000 people incongregatedsettingscoveredbytheReporttomakethemovetothecommunity.Itmakes detailed proposals covering the phasing, management and funding of thetransitioning programme. The importance of a national evaluation framework tomonitor progress is addressed. Supports to help current residents and families tomakethesteptocommunitylivinghavingspentmanyyearsincongregatedsettingsareproposed.

Chapter

11

provides

a

summary

of

the

Reports

recommendations.

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CHAPTER2

THEEVOLUTIONOFRESIDENTIALSERVICES

FORPEOPLEWITHDISABILITIES

2.1THEEARLYDEVELOPMENTOFCONGREGATEDPROVISION

ResidentialinstitutionsforpeoplewithdisabilitieshavealonghistoryinIreland.15Inthe18thcentury,workhouses,poorhousesandasylumsaccommodatedpeoplewhoweresickordestituteandpeoplewithmentalhealthproblems.

Bytheendofthe19thcentury,therewere22largeresidentialinstitutionsinIreland,

each

with

a

catchment

area

of

one

or

two

counties,

where

staff

and

residents

lived,

and where there was no interaction with the world outside the institution. Duringthe 1850s, a focus on the special needs of people with intellectual disabilitiesdeveloped. As a result of lobbying by prominent citizens, the first institution forpeople with intellectual disabilities, the Stewart Institution, opened in 1869, withfourteachersandaprogrammeofinstruction.

More than 50 years passed before a second special residential institution wasopened.Inthelate1920s,theDaughtersofCharityagreedtoturnanexistinghomeforchildren into a home andschoolfor childrenwith learning disabilities.Overthefollowing 30 years, several religious orders opened special centres around thecountry. The development of special centres marked the start of a process ofspecialisation, and this approach was strongly embedded in the 1960s, with thedevelopmentofarangeofnewprofessionsspecialisingintherapiesandservicesforpeoplewithlearningdisabilities.

2.2DEVELOPMENTSINTHE1950SAND1960S

The 1950s saw the development of Parents and Friends Groups, a movement that

grew strongly in the 1960s, with the setting up of local groups in counties aroundIrelandandthedevelopmentofservicesandfacilitiesincommunities.

The Commission on Mental Handicap (1965)16 recognised that care in thecommunitywasgenerallysuperiortoandmoretherapeuticthaninstitutionalcare.The 1970 Health Act and the development of community care services in thecountrys health boards underpinned the emerging communitybased approach toserviceprovision.

15McCormack,B.(2004)TrendsintheDevelopmentofIrishDisabilityServicesinLivesandTimes:

Practice,PolicyandPeoplewithDisabilities.P.N.WalshandH.Gash(eds).RathdownPress.16

DepartmentofHealth.CommissiononMentalHandicap.StationeryOffice,1965.

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2.3DEVELOPMENTSSINCETHE1980S

TheGreenPaperTowardsaFullLife(1984)recognisedtheslowgrowthinprovisionofresidentialservicesforpeoplewithphysicaldisabilities.Itnotedthatthemajorityof people with physical disabilities who could not live at home were maintained incounty homes, psychiatric hospitals and orthopaedic hospitals, geriatric hospitalsandcentresforpeoplewithintellectualdisabilities.17Thereviewofaccommodationcarriedoutatthattimefoundthatfewofthecentresreviewed,apartfromCheshireHomes,wereequippedtomeettheneedsofpeoplewithphysicaldisabilities:

Accommodation tends to be in openwards and dormitories offering littleprivacytoresidentswhoarelikelytospendmuchoftheirlivesthereEvenfor

theyoungerandmoremobileresidents,therearefewopportunitiestoleave

the confines of the home and this serves to heighten boredom and

frustrationResidents have little if any say in the day to day operation of

whatformanyistheonlyhomestheywilleverknow.18

Since 1990 in particular, the movement towards community inclusion for peoplewithdisabilitieshashadastron

Documents

Time to Move on From Congregated Settings