towards independent living · 4 i towards independent living: collection of examples from europe...

TOWARDS INDEPENDENT LIVING:COLLECTION OF EXAMPLES FROM EUROPE

European Disability Forum

European Network on Independent Living

© European Network on Independent Living and European Disability Forum, March 2019

Written by: Lilia Angelova-Mladenova

Design and layout: Marieta Vasileva

Front cover photo: Jessica Linder Jansson/JAG Association. The photo shows Isabelle Nordeman, herbrotherandherfatherFredrik,whoalsoworksasherpersonalassistant.

Back cover photo: JessicaLinderJansson/JAGAssociation.ThephotoshowsOlofdaSilvaOlssonandhispersonalassistant.

ThispublicationissupportedbytheEuropeanUnionthroughtheFrameworkPartnershipAgreementbetweenENIL/EDFandtheEuropeanCommission(2015–2017).TheinformationcontainedinthispublicationdoesnotnecessarilyreflectthepositionoropinionoftheEuropeanCommission.ThegoalofthesupportistoimplementtheEquality,RightsandCitizenshipprogramfortheachievementofdisabilityrights.Formoreinformation:http://ec.europa.eu/justice/grants1/files/2014_spob_og_netw/award_decision_disabilities_en.pdf

Acknowledgements

Theauthorwouldliketothankallindividualswhoprovidedinformationaboutpoliciesorpracticessupportingindependentliving–DonataPagettiVivanti,MariSiilsalu,ElisabethUdl,MilenaJohnováandDanaKořínková,AthinaFragkouli,MichaelTurner,ZoltánSzövérdfiandInesBulic.

Contents

Introduction ................................................................................................................. 3

Legislation and funding ............................................................................................. 7

StateFundedPeer-Counselling–Estonia.........................................................................................7

DirectPayments–ÁiseannaTacaíochta,Ireland..............................................................................9

Community-based services ...................................................................................... 11

Peer-Counsellingforwomenwithdisabilities–Zeitlupe,Vienna,Austria.....................................11

Supportedlivingforadultswithintellectualdisabilities– AssociationfromPromotingInclusion,Croatia..............................................................................13

SupportedDecision-Making–Quip,TheCzechRepublic..............................................................15

MobileMentalHealthUnits–Greece............................................................................................17

PersonalAssistanceforPeoplewithComplexDisabilities–JAG,Sweden.....................................19

Involvement of disabled people .............................................................................. 21

Co-ProductioninSocialCare–SCIE,UnitedKingdom...................................................................21

ParticipationofOrganisationsofPeoplewithDisabilities–Italy,Tuscany.....................................24

Self-advocacy ............................................................................................................. 26

Self-AdvocacyofDisabledPeople–CevaDeSpus,Romania.........................................................26

European Network on Independent Living and European Disability Forum, March 2019 I 3

Introduction

ThisCollectionisajointinitiativeoftheEuropeanNetworkonIndependentLiving(ENIL)andtheEuropeanDisabilityForum(EDF).ItfeaturesexamplesfromdifferentEUMemberStates,whichtoadifferentextentfacilitatetherighttoliveindependentlyinthecommunity.Itseekstopromoteandencouragethedevel-opmentofpoliciesandmeasuresfosteringdisabledpeople’s independence,inlinewithArticle19oftheUnitedNationsConventionon theRightsofPersonswithDisabilities (CRPD)– Living IndependentlyandBeingIncludedintheCommunity.Itsoverarchingobjectiveistoensurethatdisabledpeoplecanliveinthecommunity ‘with choices equal to others’1.

Thepublicationcanbeofassistancetoawiderangeofstakeholders–legislators,policy-makersatnational,regionalor local level responsible for thedevelopmentand implementationofdisabilitypolicies,serviceproviders,organisationsofdisabledpeopleandothernon-governmentalorganisations. Itcanbeusedtoidentifymeasuresandapproachessupportingtherealisationofdisabledpeople’srighttoliveindependentlyandparticipateinthecommunity.

Independent Living

Thedefinitionof‘independentliving’usedinthesurveyistheoneproposedbyENILandadoptedbytheEDFBoard:

“IndependentLivingisthedailydemonstrationofhumanrights-baseddisabilitypolicies.Independent living is possible through the combination of various environmental andindividual factors that allow persons with disabilities to have control over their ownlives.Thisincludestheopportunitytomakerealchoicesanddecisionsregardingwhereto live,withwhomto liveandhowto live.Servicesmustbeavailable,accessibletoalland provided on the basis of equal opportunity, free and informed consent and allowing personswithdisabilitiesflexibility inourdaily life. Independent livingrequiresthatthebuilt environment, transport and information are accessible, that there is availabilityof technical aids, access topersonal assistanceand/or community-based services. It isnecessarytopointoutthatIndependentlivingisforallpersonswithdisabilities,regardlessoftheirgender,ageandtheleveloftheirsupportneeds.”

TherightofdisabledpeopletoliveindependentlyissetoutinArticle19oftheCRPD,whichrequirestheStatesto‘takeeffectiveandappropriatemeasurestofacilitatefullenjoymentbypersonswithdisabilitiesofthisrightandtheirfullinclusionandparticipationinthecommunity’.Toachievethis,theyneedtoensurethat:

• Disabled people can choose their place of residence;

• Thereisarangeofsupportoptionsavailable,supportinginclusionandpreventingsegregation;and

• Publicservicesandfacilitiesareaccessiblefordisabledpeople.

1CRPD,Article19.

INT

RO

DU

CT

ION

4 I TowardsIndependentliving:CollectionofExamplesfromEurope

FurtherguidanceontherealisationoftherighttoliveincommunitycanbefoundintheGeneralCommentonArticle19,adoptedbytheCommitteeontheRightsofPersonswithDisabilities2.

The examplesTheCollectionincludesexamplesfromtenEUMemberStates–Austria,Croatia,theCzechRepublic,Estonia,Greece,Ireland,Italy,Romania,Sweden,andtheUnitedKingdom.ManyofthemarefromasurveyofgoodpracticesconductedbyEDFattheendof2016andrelaunchedin2017inpartnershipwithENIL.Thesurveyaimedtogatherinformationaboutnationallegislation,strategiesandfunding,communityandsupportser-vices,projectsandexperiences.Responseswerereceivedfromorganisationsintencountries,onlyfiveofwhichproposedgoodpractices.Tocomplementtheresultsfromthesurvey,otherpracticeswereidentifieddrawingonENIL’sandEDF’sexperienceandnetworks.ThepurposewastoensurerepresentationofbothnewandoldMemberStates,whilecoveringasmanyareasaspossible.

Theexamplesaredividedintofourareas,presentedindifferentchapters:

• Legislation and funding

Chapter1includesexamplesofanationalpolicyfortheprovisionofstate-fundedpeersupportservices(Estonia)andadirectpaymentsmodel,pilotedbyaDPO(Ireland).

• Community-based support

Chapter2presentsfiveexamplesofcommunity-basedservices,includingcommunitysupportforpeoplewith mental health problems living in remote areas (Greece), personal assistance for people with com-plexsupportneeds(Sweden),supporteddecision-making(CzechRepublic),peercounsellingfordisabledwomen(Austria)andprovisionofhousingandsupport(Croatia).

• Involvement of disabled people

Chapter 3 focuses on the involvement of disabled people in policy-making (Italy) and in the work of a non-governmentalorganisationthroughco-production(UnitedKingdom).

• Self-advocacy

Chapter5describestheestablishmentanddevelopmentofanorganisationofself-advocates(Roma-nia).

AllexamplesareanalysedfromtheperspectiveofArticle19CRPD.Theircontributiontotherealisationoftherightofdisabledpeopletoliveindependentlyandtheirlimitationsarepresented.

Follow upTheCollectiondoesnotaimtoprovideanexhaustivelistofexamplesthatfacilitateindependentliving.ENILandEDFplantofeatureadditionalexamplesonlineorinfuturecollections,andwouldbehappytohearfromanyonewitha‘goodpractice’[email protected],withthesubject‘Goodpracticeexample’.

2CommitteeontheRightsofPersonswithDisabilities(2017)GeneralcommentNo.5(2017)onlivingindependentlyandbeingin-cludedinthecommunity.Availableathttp://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRP-D/C/GC/5&Lang=en.

INT

RO

DU

CT

ION


Key recommendationsBasedontheexperiencefromthetencountries,anumberofrecommendationscanbemadeonhowtoensuretherealisationoftherighttoliveindependently.

Recommendation 1: Legislation and funding

• Access to support, such as personal assistance, should be a legal right, to ensure that all disabled peoplewhoneedsupportcangetit.

• It is important to ensure that all disabled people, regardless of where they live, have equal access to servicesandchancestoliveindependently(no‘postcodelottery’).

• Direct payment models should be introduced to allow disabled people more control over their sup-port.

Recommendation 2: Community-based services

• Thereshouldbearangeofservicesavailablefordisabledpeopletochoosefrom.Thedevelopmentofservicesshouldnotbelimitedbyassumptionsaboutwhatisbestforacertaingroupofdisabledpeople(e.g.grouphomesarethebestoptionforpeoplewithintellectualdisabilities).

• Personalassistanceisakeyindependentlivingservice.Itshouldbeavailabletoalldisabledpeople,regardlessof their impairmentorage; i.e.peoplewith intellectualdisabilitiesandchildrenshouldhaveaccesstopersonalassistance.

• Mobile services should be developed as a way to ensure access to quality support for people living insmalltownsorremoteareas,topreventinstitutionalisationandensureabetterqualityoflifefordisabledpeople.

• Guardianship laws, which deprive disabled people of legal capacity, should be abolished and support-eddecision-makingalternativesshouldbeintroduced.Thiswillensurethatalldisabledpeoplecanexercisechoiceandcontrolovertheirownlives.

• Peersupportisoneofthepillarsofindependentliving.Itsdevelopmentshouldbesupportedfinan-ciallybytheState,toensurethatalldisabledpeoplehaveaccesstosuchsupportforaslongastheyneedit.

• Theprovisionofhousingandsupportshouldbeseparated.

• Accessibleandaffordablehousingoptionsshouldbemadeavailabletodisabledpeople inregularapartmentsorhousesdispersedinthecommunity.Thebuildingofgroupsettingsfordisabledpeople(orpeoplewithlowincome)shouldbeavoided,asitprolongstheirsegregationandisolation.

Recommendation 3: Involvement of disabled people

• Disabledpeopleshouldbeinvolvedatalllevels–strategic,operational,monitoringandevaluation.

• Theneedtoinvolvedisabledpeopleshouldbesetinlaw,toensurethatitisimplemented.

• Theprocessshouldbedemocraticandtransparent–thereshouldbeclearruleswithregardtowhocanparticipateandhow,andinformationaboutthediscussionsanddecisionsmadeshouldbepub-liclyavailable.

• Itisessentialtoensurethattheprocessisaccessibleforalldisabledpeople.Thismightinvolvetheprovisionofinformationinaccessibleformats,organisingmeetingsinaccessibleplaces,securingsignlanguageinterpretationduringmeetingsorothersupport.Itmayalsoinvolveprovidingenoughtimeforconsultations.

INT

RO

DU

CT

ION


Recommendation 4: Self-advocacy

• Accessible information and training about their rights should bemade available to all disabledpeople.

• Development of self-advocacy should be supported financially by the state, as it is essential for empowering disabled people, for supporting their independence and for changing publicattitudes.

The use of ESIFs

OneoftheexamplespresentedintheCollection(Estonia)involvestheuseofresourcesfromtheEuropeanStructuralandInvestmentFunds(ESIFs)todevelopandfundservicesforpeoplewithdisabilities.Thesefunds,inparticulartheEuropeanSocialFund(ESF)andtheEuropeanRegionalDevelopmentFund(ERDF),can play an important role in promoting independent living. They can be used to fund pilot projectsandcomprehensivereformssupportingdisabledpeopletoliveinthecommunity.Forexample,theycansupport the development of a range of community-based services, including personal assistance and peer support, thedevelopment and testingof variousdirectpaymentmodels, the trainingofprofessionalsdelivering services, the building or renting of apartments and houses in the community and theirrenovationandadaptationtoensureaccessibleandaffordablehousingoptionsareavailablefordisabledpeopleinthecommunity(notinsegregatedcomplexes).ForfurtherguidanceonhowESIFscanbeusedto support community living, see theToolkiton theUseofEuropeanUnionFunds forTransition fromInstitutionaltoCommunity-basedCare,availableindifferentlanguagesat:https://deinstitutionalisation.com/eeg-publications/.

INT

RO

DU

CT

ION


Legislation and funding

State Funded Peer-Counselling – Estonia

Background

In2015,theEstoniangovernmentofficiallyrecognisedpeercounselling3 as a support service for disabled peopleandallocatedstatefundingforitsprovision.Ononehand,thiswasseenasameasuretoadvanceinclusionofdisabledpeopleinsociety(peercounsellingasasocialrehabilitationservice).Ontheother,itsought to increase disabled people’s involvement in the labour market (peer counselling as a labour market measure).TheresourcesoftheEuropeanStructuralandInvestmentFundswerealsousedtosupporttheintroductionandprovisionoftheserviceasanemploymentmeasure.

Description

Peer counselling as a social rehabilitation measure

TheprovisionofpeercounsellingasasocialrehabilitationmeasureisregulatedbytheSocialWelfareAct,whichwasadoptedin2015andenteredintoforcein2016.Theaimofthesocialrehabilitationservicesistoenablepeoplewithdisabilitiestoliveindependentlyandparticipateinthelifeofthecommunitybybuildingtheirskillsandenhancingtheirmotivationandself-confidence.

TheserviceisfundedbythestatebudgetandisadministeredbytheSocialInsuranceBoard(Sotsiaalkind-lustusamet).TheBoardisagovernmentagency,responsibleforadministrationofsocialprotectionservices,suchaspensions,familybenefits,socialbenefitsfordisabledpersons,rehabilitationservices,specialwelfareservices,andfortheassessmentofthedegreeofdisabilityandadditionalexpensesincurred.

ApersonwishingtousesocialrehabilitationservicesappliestotheSocialInsuranceBoard,whichneedstoapprove theireligibility. Servicesare thenprovidedbya rehabilitation serviceprovider,basedonarehabilitationplan.Theproviderformsarehabilitationteam,consistingofasocialworkerandotherspe-cialists;forexample,aspeechtherapist,anoccupationaltherapist,aphysiotherapist,apsychologistandapeer-counsellor.Theteampreparesarehabilitationplan,togetherwiththeperson,settingouttheobjec-tivesoftherehabilitationanddetailingtheservicesneededtoachievetheseobjectives.Ifpeercounsel-lingisincludedintheplan,thenaccesstotheserviceisgranted.Forpeoplewithoutarehabilitationplan,rehabilitationservicesareprovidedbasedonanactivityplan.

Inordertoofficiallyworkasapeer-counsellor,oneneedstohavealivedexperienceofdisabilityandtotakeashortintroductorycourseforpeer-counsellors.Thecoursecoverstopicssuchasanintroductiontocoun-sellingmethodology,dataprotection,andothers.

Peer counselling as a vocational rehabilitation measure

Peercounsellingasavocationalrehabilitationmeasureisco-financedbytheEstoniangovernmentandtheEuropeanSocialFund.ItisadministeredbytheEstonianUnemploymentInsurancefund–apublicbodyre-sponsibleforprovidingemploymentservicesandforpayingoutunemploymentrelatedbenefits.

Theaimofpeercounsellingasalabourmarketmeasureistosupportdisabledpeopleinstartingworkormaintainingemployment.ItispartofarangeoflabourmarketservicesofferedbytheEstonianUnemploy-

3Peercounsellingintheareaofdisabilityinvolvestheprovisionofinformation,adviceandsupportfromapersonwithalivedex-perienceofdisabilitytoanotherdisabledperson.

LE

GIS

LA

TIO

N A

ND

FU

ND

ING


mentInsuranceFundtodisabledpeoplelookingforajob.Otherservicesincludeworkingwithasupportperson,freeofcharge,lendingofassistiveequipmentneededtocarryoutwork,adjustmentofworkplaceandworkingequipment,provisionoftherapyandadviceandotherservices.

Peercounselling,administeredbytheUnemploymentInsuranceFund,isavailabletopeoplewithdisabilitieswhoarelookingforajobandareregisteredasunemployedorwhoarecurrentlyinemploymentoreduca-tion.Theprocedureissimilartotheproceduresetoutforsocialrehabilitationservices.Apersonwishingtousepeercounselling,orothervocationalrehabilitationservice,firstneedstohavetheirneedsassessedbyacasemanagerfromtheUnemploymentInsuranceFund.Afteranagreementisreachedonthepurposeoftherehabilitation,thepersoncanchooseaserviceproviderfromalistofapprovedproviders.Theserviceproviderpreparesanactionplanwiththeinvolvementoftheperson.TheplanneedstobeapprovedbytheFund,beforeaccesstotheserviceisgranted.Themaximumnumberofhoursofpeercounsellingthatapersoncangetis10.

Theorganisationsprovidingpeercounsellingasalabourmarketservicearecontractedthroughapublicpro-curementprocedure.Therearespecificrequirements,setoutbytheUnemploymentInsuranceFund,thattheprovidersneedtosatisfy,forexample,relatedtotheeducationofthepeercounsellor.

Why this is a good example

Peercounselling isoneof thekey independent livingservicesaimingtoempowerandbuildupdisabledpeople’sself-confidence.Theallocationofstatefundingforpeersupporthasmadetheservicesustainable.Thestatefundinghasalsoallowedtheservicetodevelopandreachmorepeopleeachyear–sincethestartoftheservice,thenumberofpeopleusingitandthenumberofcounsellorshasbeenconstantlygrowing.Togetherwiththis,thenationalcoverageandthecentralisedfundinghaveensuredthatpeoplewithdisabil-itiesfromalloverthecountry,regardlessoftheirplaceofresidence,canhaveaccesstosuchsupport.

Limitations, challenges and lessons learned

Withregardtopeersupportasarehabilitationservice,thecomplicatedeligibilityrequirementsforprovidersofsocialrehabilitationareamajorchallengefororganisationsofdisabledpeoplewishingtoprovidepeersupport.Manysuchorganisationsdonothavetheresourcestoformarehabilitationteam,inordertoberecognisedasarehabilitationserviceprovidereligibletoprovidepeercounselling.Asaresult,theyareex-cludedfromtheprovisionoftheservice.

Longwaitinglistsforsocialrehabilitationservicesisanotherchallenge.Towardstheendofeachyear,thebudgetforrehabilitationservicesisusedupandpeopleareputonawaitinglistuntilthefollowingyear.Whiletherearenoseparatelistsforpeersupport,accesstotheserviceislinkedtoaccesstosocialrehabili-tationingeneralandthuswaitinglistsbecomeabarrierfordisabledpeoplewhoneedpeersupport.

Therehavealsobeenchallengesregardingtheprovisionofpeersupportasavocationalrehabilitationmea-sure.Forexample,initiallypeercounsellorswererequiredtohaveahigherlevelofeducation.Thiswasahindrancetotheprovisionoftheserviceasmostdisabledpeople,duetobarriersintheeducationsystem,havealowereducationallevel.Thisrequirementhasnowbeenrevised.

Amajorlimitationofpeercounsellinginemploymentisthecaponthenumberofhoursofcounselling.Insomecases,10hoursmaybeinsufficienttoadequatelysupportaperson.

Further information

Formoredetailsaboutthepeersupportservicesandhowitisorganised,contactMariSiilsalu,memberofChallengeYourSenses,anEstonianorganisationofdisabledpeople,[email protected].

LE

GIS

LA

TIO

N A

ND

FU

ND

ING


Direct Payments4 – Áiseanna Tacaíochta, Ireland

Background

Inrecentyears,theIrishgovernmenthascommittedtomovingtoanew,moreflexiblemodelofservicedelivery.Itsaimistoenabledisabledpeopletohavemorechoiceandcontrolovertheservicestheyuseandtotailorservicesbettertotheirindividualneedsandpreferences.Thegoalistoensurethatdisabledpeoplecanliveindependentlyandparticipatefullyinthecommunity.Despitethiscommitment,however,individu-alisedfundinghasstillnotbeenintroducedasapracticeinIreland.Practicalsupportintheformofindividualassistanceistypicallysuppliedbydirectserviceprovidersorbyfamilymembers.

ThefirstandmainorganisationinIrelandtoofferaDirectPaymentmodelofpersonalisedsupporttodis-abledpeopleisÁiseannaTacaíochta(fromIrish-‘SupportedFacilities’).Itstartedasapilotprojectin2010,initiatedbyfourpeoplewithlivedexperienceofdisabilitywhorecognisedtheproblemsandinadequaciesoftraditionalmodelsofserviceprovision.Atpresent,theorganisationbringstogetherover30peoplewithdifferentimpairments.

Description

ÁiseannaTacaíochta(ÁT)supportsbothself-directedservices,whereLeadersmanagetheirownservice,andfamily-ledservices,wherefamilymembersmanageonbehalfofapersonwithadisability.TheworkofÁTisun-derpinnedbythephilosophyofindependentliving.Itsmissionistoprovideleadershipandsupporttoempow-erdisabledpeopletodirecttheirownlivesandenjoythesameequalityandfreedomsasnon-disabledcitizens.

ÁT’smodelofDirectPaymentsaimstogivedisabledpeoplecontrolovertheirownbudgetsandservices.Itconsistsoftwoelements:

1) Acting as an intermediary

ÁTactsasan intermediarybetweenitsmembers(calledLeaders)andtheHealthServiceExecutive(HSE)–responsibleforthedeliveryofhealthandpersonalsocialservicesinIreland.ItnegotiatesapersonalbudgetwiththeHSEontheperson’sbehalfandsupportseachLeadertoestablishandruntheirowncompany.ThepersonalbudgetistransferredfromtheHSEtoÁTandthengoestothepersons’companyaccount.TheLeaderusestheirbudgettochooseandmanagetheirownservices,usuallypersonalassistance.Thismeansthateachpersonhastheopportunitytodecidewhenandhowtheyusetheirservices,ensuringthatthissupportfitsinwiththeirlives.ItalsomeansthatLeadersbecomeemployersandassumeresponsibilityforinsuranceandtaxdeductions,etc.TheyarerequiredtoprovidemonthlyandquarterlyfinancialreportstoÁT,whichthenreportstotheHSE.Inaddition,boththeLeader’scompanyandÁTasanorganisationareindividuallyaudited.ÁTalsoreportstotheHSEonthecompliancewithrequirementssuchasgovernanceandpersonalassistancecontracts.

2) Supporting people

Becauserunningacompanyandmanagingassistantsmaybechallenging,supportisanessentialpartoftheÁTmodelofDirectPayments.

• Circles of support: ÁThelpseachLeadertoestablishapersonalCircleofSupporttoassistthemwithrunningtheircompanies.TheCircleiscomprisedofpeoplefromthelocalcommunities,eachbringingtheirownskillsandplayingadifferentpartinthecompany(forexample,coveringaccounting,HumanResourcesorHealthandSafety).

• Peer Support Network: LeadersareencouragedtoengageinÁT‘sPeerSupportNetwork–agroupofdisabledpeopleandtheirfamilieswhosupportoneanotherinpursuingtheirgoalsandlivingactively

4ADirectPaymentisacashpaymentmadedirectlytoaneligiblepersontoenablethemtopurchaseandmanagetheirowncareandsupportservices.

LE

GIS

LA

TIO

N A

ND

FU

ND

ING


intheirowncommunities. ItencouragesLeaderswithexperienceindirectingtheirownservicetoconnect with new members, advising and mentoring them, training and upskilling them, and sharing theirexperiencessothatsuccessbuildsuponsuccess.

• Staff: ThestaffalsosupportLeaders,forexample,bysupplyingresources,providinginformationonsettingupandrunningacompany,organisingtrainingforLeaders,CirclesofSupportorforpersonalassistants,orprovidingaccesstothePeerSupportNetwork.

AllLeaderspayasmallmembershipfeetoÁT,whichcoversthecostsinvolvedinthisintermediaryrole,aswellasthoseincurredinsupportingthemwiththeestablishmentandmaintenanceoftheircompany.


ArecentevaluationoftheÁT’smodel,carriedoutbytheCentreforDisabilityLawandPolicyattheNationalUniversityof IrelandGalway5, showedthat therehavebeenanumberofpositiveoutcomes fordisabledpeople,suchas:

• better level of support: Having choice and control over when, how and for what to use their support, hasallowedLeaderstoovercomethenumerouslimitationsimposedbythetraditionalmodelofser-vice provision6andtohaveabetterlevelofsupport.

• better quality of life: ThechoiceandcontroloverserviceprovisionhasallowedLeaderstohavesupport,whichisbettertailoredtotheirindividualneedsandpreferencesandtoachieveabetterqualityoflife.

• increased independence and confidence: DirectingtheirownserviceshasmadeLeadersmorecon-fidentandempowered,whichhashadapositiveimpactontheirsocialrelationshipsandinclusion.

• better social relationships:Leadershavebuiltbetterandstrongersocialrelationshipsandnetworksintheircommunities.

• community and economic participation of Leaders and their family members:Thechoice,controlandconfidenceinthemselveshaspermittedanumberofLeaderstoreturntoeducation,totakeupgainfulemployment,andtoengageinvariouscommunityactivities.Theflexibilityofsupportalsoallowedfam-ilymemberstoreturntowork,somethingthatwasnotpossiblewiththepreviousarrangement.

TheevaluationalsoshowedthatthemodelfacilitatedbyÁToffersvalueformoneythroughcost savings and cost efficiencies.IthasallowedsomeLeaderstostretchtheirbudgetfurtherandgetmorehoursofassis-tancewiththesamebudget.Costefficienciescomefromsavingsfromadministration,whichisdonebytheLeader,andfromtheuseofvaryingpayscalesdependingontheassistants’skilllevels.


BecauseofthelackoflegalframeworkonDirectPaymentsinIreland,theLeadersarerequiredtoestablishacompanyinordertoreceivepayments,whichcomplicatestheprocess.Withtheadoptionofalegalframe-work,thismodelcouldbesimplified.

Further information

MoreinformationabouttheworkofÁTanditsdirectpaymentmodelisavailableinEnglishatthewebsiteoftheorganisation:http://www.theatnetwork.com/.

5Keogh,S.andQuinn,G.(2018)Independentliving:AnevaluationoftheÁiseannaTacaíochtaModelofDirectPayments.Availableat:http://www.nuigalway.ie/media/centrefordisabilitylawandpolicy/files/Independent-Living_An-Evaluation-of-the-A%CC%81iseanna- Tacai%CC%81ochta-model-of-Direct-Payments.pdf

6Theevaluationprovidesnumerousexamplesoflimitationsimposedonpeopleusingthetraditionalmodelofserviceprovision.Forinstance,onepersonwasregularlyputtobedat8o’clockwithasleepingpillastherewasnoassistanceprovidedafterthattime;anotherwasnotabletohelptheirchildbuttonup–anactivitythatparentsnormallydo–astheproviderwouldnotallowit.

LE

GIS

LA

TIO

N A

ND

FU

ND

ING


Community-based services

Peer-Counselling for women with disabilities – Zeitlupe, Vienna, Austria

Background

PeercounsellingwasfirstavailabletodisabledpeopleinViennain1992,whenBIZEPS–aCentreforInde-pendent Living – started a peer-counselling service7.Inthefollowingyears,aspeercounsellingprovedtobeapowerfultoolforempowermentofdisabledpeople,othersuchservicesappeared.However,mostofthemdidnotoffercounsellingbyandforwomenandthusfailedtoaddressproperlythespecificissuesfacedbydisabledwomen.

Beingawomananddisabledoftenmeansfacingtwotypesofbarriers–sexismanddisabilitydiscrimination.Theytendtoreinforceeachother,makingitevenharderfordisabledwomentoparticipateinthecommu-nityonanequalbasiswithothers.

Description

ThefirstandonlypeercounsellingserviceforwomenwithallkindsofimpairmentsinAustria–Zeitlupe–wasfoundedin2012inViennawiththefinancialsupportoftheCityofVienna,whichcontinuestobeitsonlyfunder(FondsSozialesWien).Theinitiativeforitscreationcamefrom‘Ninlil’–anorganisationofwomenwithandwithoutdisabilitiesworkingtopreventsexualviolenceagainstwomenwithintellectualdisabilitiesandtosupportvictimsofsuchviolence.AfteranagreementwasreachedwiththeCityofViennaabouttheneedforsuchaservice,theBoardofNinlilengagedElisabethLöffler–adisabledwomanandanactivist–tosetouttheparametersanddeveloptheservice.ShebecamethefirstdirectorofZeitlupe.Atpresent,thestaffofZeitlupeconsistsoftwopeer-counsellors.Oneofthemisalsothedirectoroftheservice,responsibleforitsdevelopmentandday-to-daymanagement.

Thenameofthecentre–‘Zeitlupe’–translatesintoEnglishas‘slowmotion’–aneffectinfilmmaking,wheretheactionappearstoslowdown.InZeitlupe’sapproachthisisusedtomean:

• Looking closely at what you are currently doing;

• Takingtimetodiscovernewpossibilities;

• Givingyourselftimetochoosebetweendifferentpossibilities.

Zeitlupeprovidesconsultationsontopicsrangingfrompersonalassistance(forexample,funding,organi-sationandday-to-daymanagementofassistance)tovarioustopicsconcerning‘beingawomanwithadis-ability’,suchas,motherhood,housing,socialcontacts,relationships,sexuality,fundingfordifferentsupportneeds.

Theformatofconsultationsisflexible–face-to-face,telephoneoremail,thelatterbeingmostlyforspecificquestionsandanswers.Womencanalsochoosethesettinginwhichtheconsultationtakesplace–attheofficeofZeitlupe,attheirhomeoreveninaninstitution,ifnecessary.Thisflexibilityallowswomenwhoarenotabletoleavetheplacetheylive,togetaccesstoinformationandsupport.

Informationandadviceismostlyprovidedtowomenandgirlswithdisabilities.However,itisalsoavailableto family members and friends and to people working with disabled women who wish to support their em-powermentincertainareas.

7SeeBIZEPS’website(inGerman)https://www.bizeps.or.at/

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES


Toensurethequalityoftheservice,Zeitluperequiresthatallcounsellors,apartfrombeingdisabledwomenthemselves,havepreviousknowledgeofandexperiencewithprovidingpeersupport.Thecounsellorsalsohaveaccesstoregularintervisionsandcanattendindividualsupervisionseverytwoweeksandteamsuper-visionseveryoneortwomonths.

Inadditiontoprovidingpeercounselling,Zeitlupeworksactivelytoraiseawarenessonbothdisabilityandwomen’sissuesamongorganisationsactiveintheseareas.TheCentremaintainsregularcontactswiththeIndependentLivingMovementinVienna(organisationssuchas“BIZEPS”,“WAG”and“Selbstvertretungsz-entrum”)andisalsoinvolvedinnetworksofcounsellingcentresforwomen(forexample,“Netzwerköster-reichischerFrauen-undMädchenberatungsstellen”).Oneoftheresultsfromthisworkisthatthevisibilityofwomen-specificissueswithintheIndependentLivingMovementinViennahasimprovedandtherehasbeenmorefocusonwomen’sissues.


ThepeercounsellingprovidedbyZeitlupecontributestodisabledwomen’sempowermentbyhelpingthemaddressthedoublebarrierstheyface.Womenaresupportedtoliveindependently,tobemoreassertiveandstandupfortheirowngoalsandbeliefsandfortheirrightsasbothwomenanddisabledindividuals.


Akeychallengeisthelimitedcommunity-basedsupportavailabletodisabledpeopleintheireverydaylives.Peercounsellinghasthepotentialtoempowerpeople.However,ifbasicsupportforindependentlivingisnotavailable(forexample,inAustria,itisnotlegallybindingfortheauthoritiestoprovideadequatefundingforpersonalassistancefordisabledpeople),peercounsellingalonecannotcreatetheconditionsforinde-pendentlivingandfullinclusion.

ThemainlimitationisthatZeitlupe’sservicesareonlyavailabletopeoplelivingintheCityofVienna.AsZeit-lupe’sexperiencehasdemonstratedthatpeercounsellingfordisabledwomenisbothneededanduseful,itisimportanttoensurethatsuchservicesareavailableacrossthecountry,notonlyinonemunicipality.Itisalsoimportanttoensureflexibilitywhenitcomestotheformatandthesettinginwhichtheserviceisprovidedtoallowmorepeopletoaccessit.

Further information

MoreinformationabouttheworkofZeitlupeisavailableinGermanontheirwebsitehttp://www.ninlil.at/zeitlupe/index.html.YoucanalsocontactMarinelaVecerik,[email protected] or Elisa-bethUdl,directorofNinlil,[email protected].

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES


Supported living for adults with intellectual disabilities – Association for Promoting Inclusion, Croatia

Background

InCroatia,manyadultswithintellectualdisabilitiesliveinlong-stayresidentialinstitutions,becauseofthelackofcommunity-basedservicesandthe inaccessibilityofmainstreamservices,suchaseducation,em-ploymentandhousing.Inresponsetothis,theAssociationforPromotingInclusion(API)wasestablishedin1997,withamissiontopromotedeinstitutionalisationofadultswithintellectualdisabilitiesandtoprovidethesupportneededsothattheycanenjoytheirrighttoliveinthecommunity,onanequalbasiswithothercitizens.APIprovidessupportthroughorganisedhousing,which isapartofthenetworkofstate-fundedservices,overseenbytheministryresponsibleforsocialwelfare.

Description

APIprovidesorganisedhousing for adultswith intellectual disabilities in themainstreamhousing in thecommunity–inrentedapartmentsorapartmentsownedbytheserviceuser.Therecanbebetween1and5personsinasingleapartment,dependingonthepreferencesoftheserviceusersandtheirsupportneeds.Atthemoment,organisedhousingisprovidedinfivecities(SlavonskiBrod,Osijek,BjelovarandGrubisnoPolje,ZagrebandSibenik).

A person who would like to move into organised housing can directly, or through their parent/guardian, contactthelocalCentreforSocialWelfare,whichneedstoapprovetheireligibilityfortheservice.Thecostof this service can be covered by the responsible ministry, depending on the material status of the person concernedortheirfamilymembers.Thepersoncanalsochoosetopayfortheserviceoforganisedhousing,byenteringintoacontractdirectlywithAPI.

Inorganisedhousing,thepersoncanbeprovidedwithsupportinthefollowingareas:self-determination,householdchores,communityactivities,healthandsafety,freetime,making,maintainingandexpandingrelationshipswithotherpeople,employment,andlife-longlearning.

Theaimofthesupportistoenabletheperson:todecidewhereandwithwhomtheywilllive;tohavepriva-cy and to feel at home in their own apartment/house; to decide what they will do during the day; to choose wheretheywouldliketowork,orincasetheyareretired,howtheywouldliketospendtheirday;tousethesameservicesandfacilitieswheretheyliveasotherpeople;tohavetheopportunitytocontinuelearning;tohavemeaningfulrelationshipswiththeirfamily,friendsandpartners;totakepartindecidingwhosupportsthem; to receive support adapted to their age; to advocate on their own and others’ behalf; to decide how theywillbesupported;toliveaself-determinedlife.

Therearethreetypesofstaffworkinginorganisedhousing–leaders,advocates(mostlyrehabilitators,socialworkers,psychologistsoroccupationaltherapists)andassistants.Advocatesareinvolvedinperson-centredplanning,andareresponsibleforarrangingthenecessarysupport.Assistantssupportthepersonintheirdailyactivitiesintheapartmentandoutside.Leaders(managers)areresponsibleformanagingthestaffandfinances,andarealsoinvolvedindirectlysupportingtheperson.

Eachpersonhasaperson-centredplan,whichtheytakepartindeveloping.Thelevelofsupportisdeter-minedbytheperson-centredplanandvaries–itcanbeoccasional, limited,intensiveorcomprehensive.Occasionalsupportisprovidedifthepersonisveryindependentandonlyneedssupportfromtimetotime.Inthiscase,itmaybeprovidedbyanadvocate.Limitedsupportreferstocontinuedsupport,butrestrictedtospecificactivities(forexample,supportwithshopping,withgettingtoworkortakingmedication).Suchtypeofsupportisprovidedbyanassistant.Intensivesupportreferstodailysupportwitharangeofactivi-ties,andcomprehensivesupportto24-hoursupportintheapartmentandoutside.Supportcanbeflexible,dependingonwhatishappeninginaperson’slife.Importantly,thepersonwithintellectualdisabilitiesandthoseclosetothemareinvolvedinmanagingthesupport.

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES



TheserviceprovidedbyAPIallowsadultswithintellectualdisabilities,someofwhomhavespentyearsininstitutionalcare,toliveinthecommunity,toformrelationships,towork,andtogetmarriediftheylike.Inadditiontobenefitsforthem,therearealsobenefitsforthewidercommunity–peoplewithintellectualdisabilitiesbecomeneighbours,employeesandfriends.Thisservicealsoallowsthoselivingwiththeirfamilytostayinthehouseorapartment,oncetheirparentsbecomeoldorpassaway.Thiswouldnotbeanoptionotherwise,consideringthatpersonalassistanceinCroatiaisverylimitedandisprovidedonlytopersonswithphysicalimpairments.


Onelimitationoftheserviceisthatsomepeoplearestillunderguardianship,giventhatsupporteddecisionmakingstilldoesnotexistinCroatia.Thiscanlimittheirabilitytomakedecisionsandtoreceiveasalary,forexample.

AmajorchallengefortheserviceoforganisedhousingprovidedbyAPI(andotherprivatenon-profitprovid-ers)isthelimitedfundingprovidedbytheStateperperson.Thisfundinghasbeencappedto5,300HRKperperson/permonth,andisconsiderablylowerthanthatavailabletoStateproviders(whichrangesbetween8,000–10,000HRKperperson).Outofthisamount,APIhastocoverallthecostsofhousingandsupportinganindividual,whichpresentsthemwithconsiderablechallenges.Italsomeansthatthestaffworkingintheirservicearepaidlessthanthoseworkinginstate-runservices,whichmakesitdifficulttorecruitandkeepthem.

AnotherchallengeistheavailabilityoforganisedhousinginCroatia.EventhoughitispartoftheserviceofferfundedbytheState,itisstilllimitedtoasmallnumberofpeople.Manyadultswithintellectualdisabilitieslivingininstitutionsarenotabletoaccessorganisedhousing,becausetheyaretooold,haveveryhighsup-portneedsortheserviceisnotavailablewheretheylive.

Finally,eventhoughthereissomeflexibilityintheservice(i.e.peoplecanchangeflatmatesorapartmentsif they are not happy), should they choose to leave the service of ‘organised housing’ altogether and move intotheirownapartment,theylosetherighttosupport.Thisisbecause,inCroatia,fundingdoesnotfollowthepersonandthereisverylimitedaccesstopersonalassistance.

Further information

DetailsaboutthesupportedhousingserviceareavailableinEnglishandCroatianonthewebsiteofAPIathttp://inkluzija.hr.

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES


Supported Decision-Making – Quip, The Czech Republic

Background

Until2013,theuseofbothfullandpartialguardianshipforpeoplewithintellectualdisabilitiesandmentalhealthproblemswasallowedintheCzechRepublic.Fullguardianshipwasextensivelyusedforpeoplewithintellectualdisabilities–around25000peoplewereunderfullguardianshipand5000underpartialguard-ianship.InlinewiththeCRPDrequirements,in2013,fullguardianshipwasabolishedandalargerrangeoflessrestrictiveoptionswasintroduced.Therewas,however,alackofunderstandingandpracticeconcerningsupporteddecision-making.Toaddressthisproblem,theCzechorganisationsQuipandtheAssociationforsupportofpeoplewithintellectualdisabilitiesandtheirfamilies(InclusionCzechRepublic)startedaprojectcalled‘BlackandWhite’.

Description

The‘BlackandWhite’projectwasstartedin2012withthefinancialsupportoftheOpenSocietyFounda-tionandisstillbeingimplemented.Itaimstosupporttheshifttowardsahumanrights-basedapproachtodisabilitybybuildingthecapacityofindividualsandorganisationsintheareaofsupporteddecision-making.Itcombinesactivitiesinthesocialandlegalarea,seekingtosupportdisabledpeopletoliveindependently.

Inthesocialarea,theprojectfocusesonintroducingandpromotingpracticalmethodstoworkwithpeoplewithintellectualdisabilitiesandmentalhealthproblemsbasedontheprinciplesandtoolsofPerson-CentredPlanning.Specificactivitiesinclude:

• developmentandtestingofmethodstoworkwithpeoplewith intellectualdisabilitiesandmentalhealth problems and their families;

• training of social workers and other professionals on the new methods;

• creatingapoolof“communityconnectors”–peopletrainedforandabletocreateandnurturesup-portnetworksindifferentpartsoftheCzechRepublic;

• developmentofanationalmodelofcirclesofsupporttoensuresustainabilityofprojectresults;

• collaborationwithuniversitiesandmunicipalities in thedevelopmentand testingof thecirclesofsupport method;

• capacity-buildingofactivists(self-advocates,familymembers,peoplewithmentalhealthproblems)topromotesupporteddecisionmaking.

Inthelegalarea,theprojectfocusesonbuildingjurisprudenceonlegalcapacityandsupporteddecision-mak-ing.Activitiesinclude:

• analysisoflegislationandindividualcasestudiesofpeoplewithintellectualdisabilitiesanddraftingareport(‘Blackbook’);

• strategiclitigationtowardsreforminglegalcapacityjurisprudence;

• providing individual assistance to people, in order to restore or maintain their legal capacity, using less restrictivemeasuresandastructuredsystemofsupport.

Inaddition,theprojectincludesactivitiesaimedtoraisetheawarenessofpeoplewithintellectualdisabili-tiesandmentalhealthproblems,theirfamiliesandprofessionals(doctors,judges,schoolandsocialservicesstaff).Itfocusesonanalternativemodelofexercisinglegalcapacity,personalizedsupportforpeoplewithintellectualdisabilitiesandmentalhealthproblemsindecision-makingandexercisinglegalcapacity,andthemythsconcerningtheguardianshiplaw(pre-2013).Thekeyplayersatnationallevel(MinistryofJustice,Min-istryofLabourandSocialAffairs,ConstitutionalCourt,Ombudsman)werealsoinformedaboutthefindingsdocumentedintheBlackBookandtheproposedmethodforsupportnetworks.

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES



TheBlackandWhiteproject introducedandpromotedpracticalperson-centredmethodstosupportdis-abledpeopleindecision-makingandexercisingtheirlegalcapacity.Person-centredplanningisstillanewap-proachintheCzechRepublicandthesepracticaltools,togetherwiththeexperienceaccumulated,canhelpensurethatsupporteddecision-makingdoesnotturnintosubstitutedecision-making.Inaddition,withintheframeworkoftheproject,anumberofdisabledpeopleweresuccessfullysupportedtorestoretheirlegalcapacityandtohavemorechoiceandcontrolovertheirlives.Theanalysisofthecourtproceedingshelpedtoidentifyexistinglegalandstructuralbarrierstorestorationoflegalcapacityand/ortopracticalexercisingoflegalcapacityafteritsrestoration.Itshowedthatitisimportanttocombinemeasuressupportingresto-rationoflegalcapacitywithmeasuressupportingindependentlivingandinclusion.

Challenges, limitations and lessons learned

Institutionalisationposesakeychallengetotherestorationoflegalcapacity.IntheCzechRepublic,tobeabletorestoretheirlegalcapacityinfull,oneshouldhaveasupportnetwork–relativesandpersonslivingin thesamehousehold– whocanprovidesupportwithdecision-making.People living in residential in-stitutionshaveoftenlostcontactwiththeirfriendsandfamilyandthereforecannotrelyonsuchinformalsupport.Inprinciple,theycouldhavetheirlegalcapacityrestoredonlybyusingprofessionalsupportfromapublicguardianor,possibly,fromsupportservicesprovided.

Anothermajorchallengecomesfromthelackofsupporttoimplementdecisionsandlegalactions.Forex-ample,evenifapersonwithlegalcapacitychosetoleavetheresidentialinstitution,theywouldnotbeabletogetsupportwithfindinghousing,themeanstopayforitortocoverbasiclivingexpenses.Asaresult,manypeople,evenwithsupportfromrelatives,oftenchoosenottoseektorestoretheirlegalcapacity,sinceitdoesnotprovidethemwithmoreoptions,intheirview.

Lastbutnotleast,traditionalpaternalisticattitudesofkeystakeholders–families,serviceproviders,localauthorities,professionalsandcourts–havealsobeenachallenge.

Themainlessonlearnedisthattofacilitaterestorationoflegalcapacityandindependentlivinginthecom-munity,itisessentialtoensurethatadequatesupportisavailablebothwhenitcomestodecision-makingand to the implementing the decisions. For example, it is important to encourage the establishment oforganisationsthatcanprovidesupport forpeoplewhodonothave informalsupportnetworks. It isalsoimportanttoensurethatthereisarangeofdifferenttypesofsupportavailableinthecommunityandthatservicesforthegeneralpopulation,includinghousing,arealsoavailabletodisabledpeople.

Further information

Moreinformationabouttheuseofperson-centredplanningandsupporteddecision-makingintheprojectisavailableinEnglishat:http://www.kvalitavpraxi.cz/res/archive/033/004199.pdf?seek=1527586582.

Ananalysisofthelegalcasesoflegalcapacityrestorationandtheuseofsupporteddecision-makingisavail-ableat:http://www.centreforwelfarereform.org/library/by-az/legal-capacity-restoration-quip.html

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES


Mobile Mental Health Units – Greece

Background

PeoplewithmentalhealthproblemslivinginremoteareasofGreece,islandsandmountains,wereprevious-lyoftenplacedinlarge-scalepsychiatricinstitutions,awayfromtheirhomesandcommunities.Thiswasaconsequenceofthelackofadequateandtimelypsychiatricsupportintheseareas.Toaddressthisproblem,theSocietyofSocialPsychiatryandMentalHealth(SSP&MH)startedapilotprojectintheFokidaprefectureinthe1980s,introducingMobileMentalHealthUnits.Theprojectturnedouttobeasuccessintermsofbothimpactandcost-effectiveness.Asaresult,mobilepsychiatricunitswereincludedinLaw2716/1999concerningthedevelopmentandmodernisationofmentalhealthservices.TheybecamethecornerstoneofmentalhealthserviceprovisioninGreece,especiallyinsmallandremoteareas.Atpresent,thereare25MobilePsychiatricUnitsalloverGreece.

Description

Overall,MobileMentalHealthUnits(MMHU)seektofacilitateaccesstomentalhealthservicesincommuni-tyforpeoplelivinginremoteareas.Theyworkintwomainareas–preventionandrehabilitationofmentalhealthproblemsandcommunityawarenessraising.Thespecificservicesoffereddependontheneedsofthepopulationinthearea.

TheSocietyofSocialPsychiatryandMentalHealthrunstwoMMHUunits–inFokidaandThraceprefectures.Theservicestheyprovideincludeprevention,diagnostics,treatment,socialandvocationalrehabilitation,counselling,managingcrisesandacutecrises,monitoringandfollow-up,andfamilysupport.

ThestaffoftheMMHUconsistsofprofessionals invariousareas,suchaspsychiatrists,psychologists,so-cialworkers,psychiatricnurses,healthvisitors,occupationaltherapists,speechandlanguagetherapists,arttherapists,butalsounqualifiedyettrainedpersonnel,mainlycomingfromthecommunity.

TeamsofprofessionalsfromtheMMHUregularlyvisitthearea,forwhichtheyareresponsible,toprovidesupport.Supportcanbeprovidedatthehomeofthepersonoratanothercommunityservice–forexample,theCommunityHealthCentresorGeneralHospitals(PsychiatricUnits,MentalHealthCentres,andHealthCentres).There isclosecooperationbetweentheMMHUandtheGeneralPractitionersworkingattheseservices.

Whenneeded,homevisitsarealsocarriedouttominimiseorpreventtheriskofinstitutionalisation.Thesevisitscanincludeprovisionofdirectsupporttotheperson,forexampletodealwithandmanagethecrisis,andtotheirfamily,carersandneighbours,ifneeded.

Inadditiontoprovidingdirectpsychiatricandpsychologicalsupport,theMMHUsupportspeoplewithmen-talhealthproblemstodealwithpracticaldailylivingproblemsandimprovetheirindependentlivingskills.

Attherequestoftheperson,theMMHUcanalsoestablishcontactwithotherimportantpeopleandinsti-tutions,suchasfamilymembers,employers,andpriests,toprovideinformation,mentalhealtheducationorsupport.

AwarenessraisingandcommunityeducationonmentalhealthissuesisanotherimportantareaofworkoftheMobileMentalHealthUnits.Itseekstoaddressthenegativesocialattitudestowardsmentalillnessandthustopreventstigmatisationofpeoplewithmentalhealthproblems.Italsoaimstoensurethatthelocalcommunityacceptsandcooperateswiththerehabilitationteam.


Byputtinganemphasisonoutpatientsupportinthecommunity,MMHUhaveplayedakeyroleinthepro-cessofdeinstitutionalisationofmentalhealthcareinGreece.TheservicesMMHUofferallowpeoplewithmentalhealthproblemstoremaininthecommunity–tocontinuetoliveintheirhomes,neartheirfamilies

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES


andfriends,towork,toengageinsocialactivitiesandleadindependentlives,insteadofbeinginstitution-alised.Atthesametime,theawarenessraisingandpreventiveworkoftheUnitshelpsaddresstheprejudiceandstigmarelatedtomentalhealth,thusfacilitatingtheinclusionofpeoplewithmentalhealthproblemsinthecommunity.


OneofthemainchallengesistheculturaldiversityoftheregionsandtheneedtoensurethatallgroupshaveequalaccesstoservicesandaresupportiveoftheworkoftheMMHU.Toaddressthischallenge,thestaffofmobileunitsactivelyseektoengagemembersofdifferentcommunitysub-groupsintheirwork.Theystartedwithawarenessraisingactivitiesaimedatensuringthesupportofkeypeopleandthecommunityasawhole,beforeestablishingcrisispreventionandintroducingotheractivities.Thissimultaneousworkonpromotionandrehabilitationhelpedcreateasenseofownershipinthelocalcommunity.ThecommunitysupportedtheworkoftheMMHUbecausetheyfeltthattheneedsofthelocalpopulationwerebeingmet.

Further information

MoredetailsabouttheworkoftheMobileMentalHealthUnitsisavailableinEnglishandGreekontheweb-siteoftheSocietyofSocialPsychiatryandMentalHealthathttp://ekpse.gr.Formoreinformation,contactAthinaFragkouli,VicePresidentoftheSocietyofSocialPsychiatryandMentalHealth,[email protected]

ON

CL

US

ION

LE

GIS

LA

TIO

N A

ND

FU

ND

ING


Personal Assistance for People with Complex Support Needs – JAG, Sweden

Background

In1994,SwedenadoptedaPersonalAssistanceLaw,makingthereceiptofpersonalassistancealegalrightforalldisabledpeople.Personalassistancecanbepurchasedthroughearmarkedcashallocationspaidtodisabledpeople,thepurposeofwhichistopayfortheassistanceneeded.Eachdisabledpersoncanapplyforassistance.Afterapplicationandacceptance,theyaregrantedacertainnumberofhoursofpersonalas-sistanceperweek.Theassistanceusercanthenchoosehowtheassistanceisprovided–bythemunicipality,byausercooperativeorbyanassistanceagency.Theycanalsodecidetoemploytheirassistantsdirectlyandbecomeanemployer.

Description

JAGisanational,not-for-profitassociationworkingon issuesrelatedtopersonalassistanceandanti-dis-crimination.Allof itsmembershave intellectualdisabilitiesand,with fewexceptions,extensivephysicalimpairments.Manymaynothavespeech.

JAGwasfoundedin1992byasmallgroupofpeoplewithcomplexsupportneeds.WhentheSwedishper-sonalassistancelawwasadopted,JAGstartedausercooperative–anon-profitco-operativeofpersonalassistanceserviceusers.

JAGhasdevelopedamodelpersonalassistanceserviceforpeoplewithintellectualandmultipledisabilitiesthatallowsuserstohavechoiceandcontrolovertheirassistance.Thisisachievedthroughasystemofsup-ported decision-making with the involvement of a ‘good man’ (trustee) and the support of a service guaran-tor.Theserviceisavailabletobothchildrenandadults.

a) ‘Good man’ (trustee)

AccordingtotheSwedishlegislation,peoplewhoneedsupporttotakeactionsormakedecisionsareenti-tledtoatrustee–arelative,acquaintanceoranindependentperson.Theroleofthetrusteeistohelpthedisabledpersontakecareoftheirpersonalaffairs,includingfinances,andtoprotecttheirrightsandinter-ests.Thetrusteeshouldbeabletounderstandandinterprettheperson’scommunicationwellandshouldnotmakedecisionsagainstthewilloftheperson.

Thetrusteesupportsthepersonin:

• applying for personal assistance and choosing a service provider;

• appointingaserviceguarantorandworkingwiththem;

• monitoring the service, to ensure that it meets the standards agreed, and

• ensuringthatassistanceisdeliveredinawaythatisrespectfulofthedisabledperson,includingrec-ognisingtheirpersonalintegrity.

b) Service guarantor

IfamemberofJAGisunabletomanageorsupervisetheirassistants,theycanhaveaserviceguarantor.Thiscanbetheirtrusteeoranotherperson.

Theroleoftheserviceguarantorinvolves:

• leadingandcoordinatingthepersonalassistancepackageaccordingtotheindividualpreferencesofthemember,including:recruitingassistants,instructingandsupervisingassistants,puttingtogetherschedules,filingreportsandprovidingthedataneededundertheemployer’sresponsibilitytoJAG;

• ensuringthattheJAGmembergetstheassistancetheyareentitledto;

CO

MM

UN

ITy

-BA

SE

D S

ER

VIC

ES


• ensuringthecontinuityandsafetyoftheassistance.Incaseswherepersonalassistantsarenotavail-able,theserviceguarantormustprovideassistancethemselves.

• ensuringthatassistanceprovidedrespectstheintegrityandthedignityoftheperson.

Thepositionofserviceguarantorisvoluntary.MembersofJAGcanchoosetoremuneratetheserviceguar-antor(acertainamountperhour) iftheirassistancegrantcancover it.However,theserviceguarantor’sresponsibilitiesmustbecarriedoutwithorwithoutremuneration.

AnagreementissignedbetweenJAGandtheserviceguarantor,settingouttheirresponsibilities.JAGpro-videson-goingsupporttotheserviceguarantors,whichcanincludeinformationconcerninglabourlawandemploymentcontracts,advicewhenhiringassistants,andtraining.


TheJAGmodelallowspeoplewithintellectualdisabilitiesusingpersonalassistancetohavechoiceandcon-trolovertheirsupport.Theycandecidewhatkindofassistancetheyneed,who,where,whenandhowitwillbeprovided.Inaddition,beinginchargeofthesupportenablesuserstobemoreindependentandhavemorecontroloverthewaytheylivetheirlives,includingwhereandwithwhomtolive.

TheoutcomessofarshowthatJAG’smembers’physicalandmentalhealthhasimprovedsubstantially,astheygetthepersonalisedservicetheyneed,byassistantstheyknowwellandtrust.JAG’sadultmembershavebeenabletomoveoutofgrouphomes,hospitalsandotherinstitutionstoahomeoftheirown,withassistance.Quiteafewmembershavemovedfromtheirparents’hometoliveintheirownapartment.Inaddition,JAG’smembershavedevelopedinterestsoftheirown,whichtheyhaverarelybeenencouragedtodobefore.Theyhavefoundhobbiesandactivitiesthattheyenjoydoing,withsupport.

Further information:

InformationaboutJAGisavailableinSwedishontheirwebsite–https://jag.se/.DetailsaboutJAG’smodelisavailableinEnglishat:http://enil.eu/wp-content/uploads/2012/02/Pa-manual_ENG.pdf

CO

NC

LU

SIO

NL

EG

ISL

AT

ION

AN

D F

UN

DIN

G


Involvement of disabled people

Co-Production in Social Care – SCIE, United Kingdom

Background

Thetermco-productionwasfirstusedinthe1970sintheUSAtoexplainthebetteroutcomesofmunicipalservices,suchaspolicing,whenmaintainingcloserelationshipswithlocalcommunities.Itwasthentrans-ferredtoahealthandsocialcarecontext.Fromthemid-2000sco-productionhasbecomeamainstreamideainpublicpolicyintheUKandhasincreasinglybeenputintopracticeacrossbothpublicandvoluntarysectors.

Insocialcare,co-productionmeansequalpartnershipandcollaborationbetweenpeopleusingservicesandsocial care professionals8.Itinvolvesshiftingthebalanceofpowertowardspeopleusingtheservices;theyarerecognisedasexpertsintheirownrightandinvolvedinthedesignanddeliveryofservices.Co-productiongoesbeyondparticipation,whichusuallyreferstolimitedinvolvementthroughconsultation,wherepeopleareaskedtoexpresstheirviews.Theriseofco-productioninsocialcareisstronglylinkedwiththedisabilitymovement,whichchallengedthepowerofprofessionalsanddemanded‘nothingaboutuswithoutus’.

Description

TheSocialCare InstituteforExcellence(SCIE) isaUK-based independentcharityworkingto improvethequalityofcareandsupportservicesforadultsandchildren.Itsactivitiesincludedevelopmentoffreere-sourcesaimedtoimprovetheknowledgeandskillsofcarestaffandcommissionersandprovisionofpaidservices,suchastraining,consultancy,researchandevaluation.SCIEisanactiveadvocateforco-productioninhealthandsocialcareandwasoneofthefirstorganisationsintheUKtoadopttheprinciplesofco-pro-ductioninitswork.

SCIE’sengagementwithco-productionbegan in2010whenan independent reviewof theorganisation’sparticipationworksuggestedthatitsimpactcouldbeimprovedthoughaco-productiveapproach.Followingonfromthis,theorganisationbegantodevelopitsco-productionstrategy.

ThefirststepwastorecruittotheSCIE’sBoardapersonwhousesservicesandwhowouldalsochairanewCo-productionNetwork.ThentheCo-productionNetworkwasestablishedwithmembershipmadeupofuser-controlledandcarer-controlledorganisations,equalitygroupsandorganisationsrepresentingandworkingwith other seldom-heard groups. TheNetwork,which currently has 65members,meetsinfull twiceayeartogive inputtoSCIE’sstrategicdecisions. Inaddition,membersofthenetworkareinvolvedinallaspectsofSCIE’swork,includingrecruitmentpanelsandprojectadvisorygroups,aswellastheequality,diversityandhumanrightsforum,andreviewingSCIE’snewresources.ACo-production,EqualitiesandHumanRightsSteeringGroupwasalsoestablishedwithmembersoftheNetwork,trusteesandSCIEstaff.ItmeetssixtimesperyearanditsroleistoadviseSCIEonthedevelopmentoftheco-pro-ductionstrategyandonequality,diversityandhumanrightsissues.

SCIE’sco-productionstrategyrequiredanumberofchangestobemadeintheculture,policiesandpracticesoftheorganisation,inadditiontothechangesinthestructure,describedabove.Theyinvolved:

• Embedding co-production in SCIE’s vision and business objectives: A new vision and values were developedbythestaffandtheBoard,whichstronglyfeaturedco-production.Oneofthebusinessobjectivesfocusedonensuringthatthevoiceofpeopleusingservicesisincludedinallaspectsoftheworkoftheorganisation.

8ENIL(n.d.)Co-production.FactSheet.AvailableinEnglish,German,Italian,Lithuanian,PolishandSerbianat: http://enil.eu/independent-living/fact-sheets/

INV

OLV

EM

EN

T O

F D

ISA

BL

ED

PE

OP

LE


• Staff engagement and training:Asurveywascarriedoutamongstaff,whichrevealedastrongappre-ciationofco-productionbutalsoaneedforfurtherguidance.IndiscussionswiththeCo-productionNetworkandSteeringGroup,itwasdecidedtointroducemandatorytrainingforallstaffmembers.ThetrainingwasdesignedbyagroupconsistingofCo-productionNetworkmembers,externalusersandcarersandstaff.Itisdeliveredbyteamsofstaff,peoplewhouseservicesandcarers.

• Review and revision of recruitment policies and procedures: Following this review, it was decided thatapersonwhousesservicesor isacarerwouldbeincludedinselectionpanels,exceptwheretherewasacompellingreasonnottodoso.

• Introducing performance measures: Newperformancemeasures, supporting thedevelopmentofco-productionacrossSCIE,wereintroduced.Theyinclude,forexample,arequirementtoplanandbudgetforco-productionatthebeginningoftheprojects.

• Reviewing procurement policies:Procurementpolicieswerereviewedandrevised toaddress thebarrierstoco-productionandencouragecommissioningofuserandcarergroupswhenappropriate.

AnumberofchangesinpoliciesandpracticesconcerningSCIE’sworkwithpeopleusingservicesandcarersarealsointroduced,forexample:

• Support and training:Supportandtrainingisprovidedtopeoplewhouseservicesandcarerstoen-ablethemtotakepart.

• Approaches to co-production:Differentapproaches toco-productionareused toensure that theneedsofspecifictargetgroupsaremet.Thebestapproachesto involvement indifferenttypesofworkareidentifiedwithpeoplewhouseservicesandcarers.Feedbackisprovidedtopeoplewhotakepartinco-productionabouttheresultsoftheirinput

• Compensation for participation:Afeeorequivalenttrainingorotherbenefitsisofferedtopeopleusingservicesandcarersfortheirparticipation.Reasonableexpenses,associatedwithparticipationinco-productionactivities,arealsocovered.

• Access: Various access and support needs are addressed, including related to physical accessibility, information,emotionalorpsychologicalbarrierstoparticipation.


Theco-productiveapproachadoptedbySCIEhashelpedmaketheworkofSCIEbetterconnectedtothelivesofdisabledpeople.Togetherwiththis,ithasalloweddisabledpeopletohaveasayonkeyissuesrelatedtoqualityofcareandsupportservicesforadultsandchildren.Ithelpedbringdisabledpeople’svoicestotheforefrontofinitiativeslikethedevelopmentofnationalguidelinesforsocialcare,producedwiththeNationalInstituteforHealthandCareExcellence.Theguidelinesaimtoimproveoutcomesforpeoplewhousesocialcaresupportbyensuringthatsocialcareservicesandinterventionsareeffectiveandcost-efficient.Theydothisbymakingrecommendationsaboutbestpractice.


Themainlessonslearnedareabouttheimportanceofbeinggroundedintheprinciplesofco-productionandusingthejigsawapproachtoimplementationtogetco-productionright.Thejigsawapproachtomanagingchangeisawholesystemapproach,consistingoffourelements:culture,structure,practiceandreview.Theimportanceofaddressingaccessissuesineverything,particularlyformeetingsandevents,shouldalsobeemphasised.

Themainchallengeisthetensionbetweenco-productionandincomegeneration.SCIEraisesasignificantpartofitsincomefromcommercialsources,bysellingitsservices.Inthesecases,co-productioncanbeanasset,as itprovidescredibilitytotheworkoftheorganisation.Atthesametime, itaddscostsandtime to theprojects,which canput theorganisationat adisadvantage.Asa result, it canbedifficult for the

CO

NC

LU

SIO

NIN

VO

LVE

ME

NT

OF

DIS

AB

LE

D P

EO

PL

E


organisation to incorporate co-production in smaller contracts and one-off training sessions. In training andconsultancy–anewareaforSCIE–therehaveevenbeenactivitieswithoutuserinvolvement.

Some of the actions taken to address these challenges include a more vigorous promotion of SCIE’sco-productionofferandtheestablishmentofasystemforevaluatingtheeffectivenessofco-productioninSCIEprojects.Itwasacknowledgedthattheapproachtoco-productionneedstobeflexible,inordertoaddressthechangingbusinessrequirements.Forexample,itneedstobeproportionatetothescaleandrequirementsofeachproject,meaningthatthelevelsofco-productioncanvarybetweenprojects.Itwasalsorecognisedthatgoodplanningandbudgetingatthebeginningoftheprojectscanhelpaddressthesechallenges.

For more information

MoredetailsaboutSCIE’sco-productionapproachcanbefoundontheco-productionsectionontheorga- nisation’swebsite:https://www.scie.org.uk/co-production

INV

OLV

EM

EN

T O

F D

ISA

BL

ED

PE

OP

LE


Participation of Organisations of People with Disabilities – Italy, Tuscany

Background information

InItaly,peoplewithhighsupportneedswithoutfamilysupportareusuallyforcedtoliveintraditionallong-stayresidentialinstitutionsduetothelackofaccessibleandaffordablehousingandsupportinthecommu-nity.Approximately90%ofallavailableresidentialplacesareinsuchinstitutions.InJune2016,afteractivelobbyingfromorganisationsofpeoplewithdisabilitiesandparents’organisations,theItaliangovernmentadoptedLaw112/2006,aimedatsupportingde-institutionalisationandcommunity livingofpeoplewithhigh support needs9.ThelawcreatesaFundwithintheMinistryofLabourandSocialPolicyforassistanceofpeople with high support needs without family support, which allocates resources to the regions to develop alternativehousingsolutionsandprovidesupportathome.TheimplementationoftheLawandtherelatedfundingismanagedatregionallevel.ThenationalgovernmenthasadoptedaDecreefortheimplementationofthelaw,providingguidanceonhowtheresourcesofthefundcanbeused–forexample,specifyingthegeneralparametersofthehousingsolutionsintermsofdimension(nomorethan5cohabitants)andloca-tion(inthecommunity).Eachregionhadtoadoptitsownregionaldecreeanddecidewhethertoallocateadditionalfundsfortheimplementationofthelaw.TheGovernmentofTuscanysoughttoactivelyengagedisabledpeopleinthedevelopmentofthisdecree.

Description of the practice

InTuscany,therehasbeenaninformalmechanismforconsultationsondisabilityissuessince2015,whena roundtable was established at regional level including the main stakeholders – disabled people (through theregionalnetworksofDPOs),serviceproviders,directorsofthelocalunitsofthepublichealth-careandsocialsystemandothers.Temporaryroundtablesarealsoformedonspecificissuesofregionalcompetence(forexample,autism,healthcarestafftrainingtoimprovetheaccessofpersonswithdisabilitiestogeneralhealthcarefacilities,accessofpersonswithdisabilitiestomuseums,librariesandotherculturalfacilitiesandactivities)whereDPOsandstakeholderswithaparticularinterestinthetopictakepart.

Participantsinconsultationtablesvarydependingontheissuetobediscussed–regionalrulesandregu-lations,implementationmeasuresorotherinitiativestobeundertakenbytheregionalpublicadministra-tion.Usually,thereareoneortworepresentativesofthefourregionalDPOnetworksandrepresentativesofotherDPOsworkingonthespecifictopic.Theconsultationtablesarealsoattendedbymembersoftheregionaladministrationwithcompetenceonthetopicunderdiscussion.Expertsfromuniversitiesandotherstakeholderscanalsobeinvolved.

UntilJanuary2017,consultationswithorganisationsofdisabledpeoplewereonlyintheformofdiscussionmeetings.However, the consultations concerning the implementationof Law112/2006at regional levelwere organised and managed in a more structured way, ensuring greater involvement of disabled people fromthestartandduringtheimplementation.First,ameetingwasorganisedwithrepresentativeDPOnet-workstodiscusstheforthcomingregionalregulation.Thentheproposalforaregulationwassenttothemandtheywereaskedtoprovidewritteninput.Theirproposalsandsuggestionswerethenintegratedintheregulation,whichwassubmittedforapprovaltothenationallevel(theMinistryofLabourandSocialPolicy).Twomoremeetingswereorganisedin2017tosupporttheimplementationofthedecree.OneinJune–todesignanimplementationplan,afterthefeedbackfromtheMinistrywasreceived,andoneinSeptember–toestablishmoredetailedrequirementsforfunding.

9The law isa step towardsdevelopmentofalternatives to traditional institutions.However, ithasmany issues, includingvery limitedfundingandscope,whichwillaffectnegativelytheoutcomesfordisabledpeople.

CO

NC

LU

SIO

NIN

VO

LVE

ME

NT

OF

DIS

AB

LE

D P

EO

PL

E



Associalprotectionandhealthcaresystems in Italyareunder theresponsibilityof theregionalgovern-ments,theeffectiveinvolvementofpeoplewithdisabilitiesisessentialforensuringthattheimplementationofthelawisinlinewiththeprinciplesoftheCRPDandtakesintoaccounttheneedsandpreferencesofpeoplewithdisabilitiesandtheirfamilies.

Whilenotideal,theconsultationprocessthatwassetupinTuscanywithregardtotheregionalimplementa-tionofLaw112/2016wasastepforward,comparedtotheprevioussituation.Itgavedisabledpeoplemoreopportunitiestoprovideinputandtohaveasayinthedevelopmentoftheregionalregulations.Mostoftheirproposals,whichaimedtocreatemoreopportunitiesforpeoplewithdisabilitiestoliveindependently,wereincludedintheregionaldecree.Onesuchproposal,whichwasadoptedonlyinTuscany,allowsdisabledpeopletousesupportevenwhentheylivewithanon-disabledperson,forexampleapartner.ThedecisionoftheGovernmentofTuscanytoallocateadditionalfunds(5.500.000EUR),doublingtheavailablenationalbudgetfortheimplementationofthelawatregionallevel,wasalsoinfluencedbytheregularconsultationwiththeDPOnetworksandtheirongoinglobbyingactions.


Amajorlimitationoftheconsultativeprocessisthatitisnotsupportedbyalegislativeact.Thismakestheprocessunsustainable– forexample,achange in theregionalgovernmentor itspolicycouldmeanthatconsultationsarenolongersupported.Therearealsonorulesconcerningthecompositionofthetables,thefrequencyoftheconsultationsandtheissuestobediscussed.

Therehavebeenanumberofchallengestotheeffectiveparticipationofdisabledpeopleinthewaythecon-sultativeprocessisorganised.Onesuchchallengewasthelackofaccessibilityoftheconsultationprocess.Forexample,thedocumentswerenotprovidedinanaccessibleformatforblindpersons,captioningorsignlanguageinterpretationwasnotavailableduringthemeeting,andtherewasabroaduseoftechnicallan-guage,acronymsandreferencestopreviouslegislationorotherofficialdocuments.

Anotherchallengehasbeenthelackofcompensationforthecostsassociatedwiththeconsultation.Partic-ipationinsuchconsultationsrequiresasignificantfinancialandnon-financialcommitment–forexample,timeormoneytopayfortraveltotheplacewhereconsultationsareheld.Thelackofcompensationputsorganisationsofdisabledpeopleatadisadvantagecompared tootherstakeholders, forexampleserviceproviders,whicharegenerallybetterresourced.

Finally,thelackoftransparencyoftheconsultationprocesshasalsobeenachallenge.TheDPOsandtheirregionalnetworksandotherstakeholdersaremostlyinvitedseparatelytoparticipateinconsultationmeet-ingsandtheycannotexchangetheirviews,noraretheyawareofeachother’spositions.Asaconsequence,duringtheconsultationprocessontheimplementationofLaw112/2016forexample,therequirementscon-cerninghousingunitswerechangedtoreflecttheperspectiveofhealthcareproviders,withoutconsultingDPOsandtheirnetworks.Thischangewillhaveanegativeimpactontheindividualautonomyofdisabledpeoplelivinginthehousingunitsandontheirfreedomtochoose.

Further information

Formore information about the consultation process, contact FISH – theNational Federation forOver- comingDisabilities(FederazioneItalianaperilsuperamentodell’handicap)[email protected]

INV

OLV

EM

EN

T O

F D

ISA

BL

ED

PE

OP

LE


Self-advocacy

Self-Advocacy of Disabled People – Ceva De Spus, Romania

Background

Mostpeoplewithdisabilities inRomaniaremainexcludedfromsociety.Atpresent,therearestill18,000peoplewithdisabilitieslivinginresidentialinstitutions,wheretheyfaceabuse,violenceandinhumantreat-ment.Thoselivinginthecommunity,intheirfamilies,remainisolatedandexcludedbecauseofthelimitedavailabilityofsupportservices.Familiesthathaveadisabledmemberliveinpovertyandarestrugglingtosurvive.

Thereareseveralnon-governmentalorganisationsworkingondisabilityissuesinRomania,includingor-ganisations of peoplewith physical impairments. However, there are no cross-disability organisationsof self-advocates, apart fromCeva de Spus (in English – something to say). Ceva de Spus unites self- advocateswithphysicalandintellectualdisabilities,workingtoraisesociety’sawarenessaboutthebar-riersdisabledpeoplefacetoparticipateinthecommunityandtoshowthattheytoocanliveanordinarylife.

Description of the practice

CevadeSpusstarted in2010inTimisoaraasan informalgroupofpeoplewithdisabilities living inthecommunity.Oneyearlater,astheygrewandrealisedtheyneededtobemorevisible,theyrecruitedasupportpersontohelp themgetorganised. In2012, theystartedthinkingaboutestablishinga formalassociationandworkingonitsstatuteandgoalsand,in2013,CevadeSpuswasofficiallyregisteredasalegalentity.

TheorganisationisrunbyaBoard,consistingoffivepeople–twoco-presidents(onewithaphysicalandone with an intellectual disability), two vice-presidents (one with a physical and one with an intellectual dis-ability)andonesecretary.TheBoardreportstotheGeneralAssembly,whichmeetstwiceayear.TheBoardmeetseveryweektodiscusstheworkoftheorganisation,toplanactivitiesforthecomingweekandtodecidewhatneedstobediscussedwiththemembersoftheorganisation.Activemembersalsomeeteveryweektotalkaboutpendingissuesandtodecideonwhichactivitiestheywouldliketogetinvolvedin.Theminutesfromthemeetingarethensenttoallmembers.

Thestaffoftheorganisationincludetwoself-advocates–onefull-timeandonepart-time–andtwofull-timesupportpersons.TheroleofsupportpersonsistohelptheBoardandthemembersmakedecisions,forexample,byprovidinginformationandaskingquestions.Thefinaldecisionmaydifferfromtheopinionofthesupporterbuttheirroleistohelpself-advocatestoputitinpractice.Supportersalsohaveprojectmanagementresponsibilities.Whilealldecisionsaremadebyself-advocates,theday-to-daymanagementandreporting isdonebyoneof thesupportpersons.Finally, supportershelpself-advocatesprepare formeetingsandtodeliverpresentationsatconferences,andtheytranslateintoeasy-to-understandlanguageduringmeetings.

TheworkoftheorganisationisalsosupportedbyaConsultativeBoard.Itiscomprisedofnon-disabledpeople coming from different sectors. The Consultative Board is not involved in decision-making, butsupportstheorganisationwithadviceandguidance,especiallyincrisissituations.MembersoftheCon-sultativeBoardmeetformallyonceayear;however,theyareconstantlyintouchwiththeorganisationthroughouttheyear.

CevadeSpus’workistosupport itsmemberstobecomemoreactiveandspeakupforthemselves.Thisinvolves:

CO

NC

LU

SIO

NS

EL

F-A

DV

OC

AC

y


• Organisingweeklymeetingswithmembers,wheretheycanspeakaboutthingsthatareimportantforthemandmakedecisionsabouttheactionstheywouldliketotake.

• Organising training sessions formembers to help them improve their skills related to workinginteams,communication,strategicplanning,story-telling,conflictmanagement,personalbudgetmanagement,cooking,English language,andother.Activities,suchasyogasessionsarealsoor-ganised.

• Supporting members to understand their rights and learn what to do if they are discrimina- ted against. For example, at themembers’meetings, the Convention on the Rights of Persons with Disabilities is read in an easy-to-read format and discussed. Training sessions are also organised.

• Providingfinancialsupporttothememberstoenablethemtoovercomethelackofsupportinthecommunityandbemoreindependentandactive.Eachmemberhasapersonalbudget,whichde-pend on their disability, the support they have at home, and the number of children they have, can be between450and1000EURperyear.Itcanbeusedtopayforservices–forexample,toimprovetheaccessibilityofanapartment,togetsupportathome,toaccessdifferentservicesinthecommunity,suchaspsychotherapy,medicalservicesandassistance.Thefunds for thesepersonalbudgetsareraisedthroughvariousfundraisingevents.

Inaddition,CevadaSpuscurrentlyworksonthreemainpriorities, identifiedbythemembers–de-insti-tutionalisation, community living and theuseof EUStructural and Investment Funds (atnational level),accessibility(atlocallevel)andawarenessraising(atlocallevel).Theyhavebeenverysuccessfulinraisingawarenesswithinthelocalcommunityandattractingsupportatthelocallevel.Theyhavealsohelpedmaketransportation,trafficlightsandplaygroundsinTimisoaramoreaccessible.

TheworkofCevadeSpusisfundedbyaforeigndonor–theOpenSocietyFoundationsPublicHealthPro-gramme–buttheyarealsosupportedbythelocalbusinesssector.Theyorganisevariousfundraisingactiv-itiesatthelocallevel,whichalsoaimtoraisethecommunity’sawarenessandaddressstereotypesaboutdisability,byinvolvingbothpeoplewithandwithoutdisabilities.Forexample,theyorganiseawinefairandanannualcommunityrace,whereeverybodyiswelcometotakepart,regardlessoffitnesslevel.Thereareplanstostartasocialenterprisetohelpfunditswork.

Why this is a good practice

• Independence and inclusion: Self-advocateshavebecomemoreconfidenttomakechoicesanddeci-sionsabouttheirlivesandtobemoreindependent.Someofthemhavestartedjobs.Theyknowwhattodoiftheyfacediscrimination–withwhomtospeak,whatlegislationtouse.

• Participation in decision-making: Self-advocateshavebecomemoreawareabout their rightsandempoweredtospeakup.Theyarealsomoreengagedwithpolicy-makingatlocallevelandhaveasayinthedecisionsthataffectthem.

• Awareness-raising: Disabled people became more visible in the local community and better accepted.


Theauthenticityoftheorganisation–peoplewithdisabilitiesspeakingupforthemselves–hasbeenkeyfortheprogressachievedatlocallevel.Thelocalauthoritiesweremorewillingtolistenandtakeactionswhendisabledpeoplethemselvespresentedaproblemoraskedforasolution.

There have been a number of internal and external challenges. A key external challenge is related tothe barriers some disabled people face when joining Ceva de Spus. For example, people living in pro-tectedhomes intheareawerediscouragedfromjoiningtheorganisationbythemanagerofthesetting.

SE

LF

-AD

VO

CA

Cy


Theinternalchallengesincludepoorself-esteemandself-confidenceamongself-advocates,especiallyinthefirstyears.Otherchallengesincludedalackofmanagementskillsandinternalconflicts.

Further information:

MoreinformationabouttheworkofCevadeSpusisavailableinEnglishandRomanianontheorganisation’swebsitewww.cevadespus.ro.Youcanalsocontactthematcontact@cevadespus.ro.

CO

NC

LU

SIO

NS

EL

F-A

DV

OC

AC

y

European Network on Independent Living and European Disability Forum, March 2019 I III

European Network on Independent Living (ENIL)7th Floor – Mundo JRue de l’Industrie 101000BrusselsBelgiumE-mail:[email protected]:www.enil.eu

European Disability ForumSquaredeMeeus351000BrusselsBelgiumE-mail:[email protected]:www.edf-feph.org

TheEuropeanNetworkonIndependentLiving(ENIL)isaEurope-wide network of disabled people, with members throughout Europe. ENIL is a forum for all disabled people, IndependentLivingorganizationsandtheirnon-disabledalliesontheissuesofIndependent Living. ENIL’s mission is to advocate and lobby forIndependentLivingvalues,principlesandpractices,namelyforabarrier-free environment, provision of personal assistance support and adequate technical aids, togethermaking full citizenship ofdisabledpeoplepossible.

The European Disability Forum is an umbrella organisation ofpersonswithdisabilities that defends the interests of 80millionEuropeanswithdisabilities.Weareauniqueplatformwhichbringstogether representative organisation of personswith disabilitiesfromacrossEurope.Weare runbypersonswithdisabilitiesandtheir families. We are a strong, united voice of persons withdisabilitiesinEurope.

Contact us

Contact us

About the European Network on

Independent Living

About the European Disability Forum

www.enil.eu

www.enil.euwww.edf-feph.org

towards independent living · 4 i towards independent living: collection of examples from europe...

Documents