Finding a way forward

How Scotlands councils can support people with sight loss

RNIB Scotlands manifesto for the 2012 Scottish local authority elections

Contents
Introduction Education SelfDirectedSupport EmploymentandtheuseofArticle19 Talkingbooks Emotionalsupportfornewlydiagnosedpatients Learningdisabilityandsightloss Incomemaximisation HaggeyeStopandStarecampaign 3 4 5 6 7 8 9 10 11

Introduction
Localauthoritiesarethemostimportantday-to-dayagentinthelivesofmostblind andpartiallysightedpeople.Theyprovidevitalservicessuchastalkingbooksforthe elderly,socialcaresupportandeducation.Itisessentialthatblindandpartiallysighted peopleengageeffectivelywiththoseservicestoensuretheycanleadasindependent livesaspossible. TheRoyalNationalInstituteofBlindPeopleScotlandwelcomesthisopportunityto produceamanifestoforthelocalauthorityelectionsin2012. Thereare188,000Scotswhoareblindorpartiallysightedandthisissettodoubleby 2031,andmanyofthoseareatthemarginsofpoverty.Localauthoritieswillbethefirst portofcallformanyvisuallyimpairedpeopleseekinghelpandsupport. Becausewerecognisetherewillbesignificantandincreasingpressureonthebudgets oflocalauthorities,RNIBScotlandhasproducedthismanifestotoreflectourpriorities: t obuildonandenhancetheservicesalreadyprovidedtoblindandpartially sightedpeoplethroughcontinualimprovementandinnovation t osupporttheworkoflocalauthoritiesinplanningfortheincreasingdemandby makingbestuseofresourcesinthemediumandlongtermthroughfocusingon earlyinterventionandanticipatorycare. Wehopethattheproposalshighlightedinthismanifestowillpointtothoseareaswhere localauthoritiescanhavethemostpositiveandcosteffectiveimpactonthelives ofsomeofScotlandsmostvulnerablepeople,andwillcomplementtheworktheyare alreadyundertaking.

Education
RNIBScotlandbelievesthatblindandpartiallysightedpeopleshouldhavethesame rangeofeducationalopportunitiesastheirsightedpeers.Atpresent,though,24per centofblindandpartiallysightedpeopleunder60havenoqualifications,compared with15percentofthegeneralpopulation. Therearecurrentlyaround2,100blindandpartiallysightedchildreninScottishschools andtheirparticipationinmainstreameducationisnowwellestablished.Buteducational materialsarenotconsistentlyavailableinaccessibleformats(suchasbraille,audioor largeprint). RNIBScotlandwelcomesthedevelopmentoftheGLOWsystemasanationalonline libraryfortranscribedtextbooksandothereducationalmaterials.Inthemeantime, however,itisimperativethatblindandpartiallysightedchildrencanaccessthesame educationalmaterialsastheirclassmates. WhileGLOWiscompliantwitharangeofspeechandenlargementsoftware,a significantongoingproblemcanoccurwhenschoolslocalintranetsystemsare updated.Assistivetechnologyusedbyvisuallyimpairedlearnersisoftenrendered redundantandhastobereplaced.Asaresult,insomecasestheyareunabletouse theirschoolsintranetsystemforweeksatatime. Similarly,securityisoftencitedasareasonforpreventingincreasedaccesstoportable devices,suchasbraillenote-takers,laptopswithwirelessconnectionandiPads.Yet suchdevicescanoffersubstantialindependenceandlearningopportunitiestovisually impairedpupils.

Asks
A  lllocalauthoritiestocomplywiththeEqualityActbyensuringblindand partiallysightedlearnershaveaccesstothesameeducationalmaterialsatthe sametimeastheirpeers. L ocalauthoritiestoworkwiththeirrespectiveintranetproviderstoensurethere arenotechnicalbarrierstoaccessingeducationalmaterialswhensystemsare updated(refreshed). A  llmaterialspostedonGLOWtobetranscribedtoanagreedconsistent professionalstandard. L ocalauthoritiestoworkwithappropriatepartnerstoimprovewi-fiaccessfor portabledevices,suchasbraillenote-takers,thatareincreasinglyusedbyblind andpartiallysightedpupils.

Self Directed Support

Manypeoplewithsightlosswhohaveassessedcareneedsreceivesocialcareand supportservices. TheSelfDirectedSupport(SDS)initiativecurrentlyallowspeopletodirectlybuyin theservicestheyneedinaformthattheychoose.Insteadoftheirlocalsocialwork departmentprovidingorarrangingservices,SelfDirectedSupportallowsthemto managethisforthemselves,choosingwhattobuyandhowmuchtospend.Thereis alsotheSelfDirectedBillinprogressthatislikelytoincreasethepersonalisationof care. RNIBScotlandsupportstheprinciplesofSelfDirectedSupport.Itmeanspeoplewill nolongerjustberecipientsofservicesbutactiveparticipantsinhowtheircareand supportisprovidedinfuture. Weare,however,concernedthatthecostsofanysensorylossbothupfrontand hiddenareidentifiedintheassessmentprocessandbudgetedforincalculatingthe leveloffinancialsupportthelocalauthorityoffers. Ensuringtherightlevelofprovisionofsupportwillgivepeoplethechoiceand autonomytoleadhealthyandfulfillinglives.

Ask
T oensurethateverylocalauthoritybuildseffectiveassessmentprocesseswhich takefullaccountoftheimpactofsightloss,knownandunknown,onan individualswiderhealthandwellbeing,andthatDirectPaymentstrulyreflect thepersonscareneeds.

Employment and use of Article 19

Thereareanestimated8,500peopleofworkingageinScotlandwhoareblindor partiallysighted.Butpeoplewithsightlossareamongstthemostdisadvantaged groupsinsocietywhenitcomestoemployment. Whiletheemploymentrateofdisabledpeopleingeneralcontinuestoincrease,the positionofblindandpartiallysightedpeoplehasremainedalmoststatic(29percent ofblindandpartiallysightedpeopleinemploymentcomparedto76percentinthe generalpopulation). Eveningoodtimestheunemploymentrateismorethantwo-thirds.Intimes ofeconomicdownturn,blindandpartiallysightedpeoplefaceanevenmore disproportionatedisadvantage. Localauthoritiescanactivelysupportblindandpartiallysightedpeople,andothers withdisabilities,byapplyingtheEuropeanUniondirectiveArticle19,whichempowers publicbodiestoreserveprocurementcontractsforsupportedbusinesses(enterprises whichemployatleast50percentofpeoplewithdisabilities). Avibrantandinnovativesupportedbusinesssectorcanplayakeyroleingenerating employmentopportunitiesforblindandpartiallysightedworkers.

Asks
I tisScottishGovernmentpolicythateverypublicbodyandlocalauthority shouldhaveatleastonecontractissuedthroughArticle19.Wewouldurgelocal authoritiestomaximiseuseofArticle19andhelpsupportdisabledandblindand partiallysightedpeople. T herangeoflocalauthoritysupporttojobseekerswithsightlossvaries.Wewant toensurequalityisconsistentandthatlocalauthoritiesarefullyawareofthe specialistservicesavailable. 

Talking books
Talkingbooksareaudioversionsofpublishedfictionandnon-fictionbookswhich arespeciallydesignedforeaseofuseforblindandpartiallysightedpeople.RNIBs TalkingBooksServicehasbeencalledalifelinebysubscribers.Withoutlocalauthority support,onlyatinyfractionofthebooksthatsightedreaderstakeforgrantedwould beavailable. Talkingbooksenablepeoplewithsightlosstoaccessthesameliteratureastheir sightedpeers.RNIBmaintainsthelargestlibraryofsuchbooksinEuropeona not-for-profitbasisandasubsidisedlendingserviceforsubscribers. TheTalkingBooksServicehas19,000titles.OurtranscriptionunitinGlasgow transcribesarangeoftitlesbyScottishauthorsorwithScottishthemes. Manylocalauthoritiescurrentlypaythemodestsubscriptionfeesforblindorpartially sightedpeopleintheirareaandmanyreadersarelivingonlowincomes. Anysavingstocouncilsbycuttingbackthissupportwouldbeanegligiblesaving butthelosstothosewithsightloss,oftenelderlyandlivingalone,wouldbeimmense. Currently,onlysevenpercentofbookspublishedintheUKevermakeitintoany alternativeformat.Peoplewithsightlossusuallyhavetowaitmonths,evenyears,after mainstreampublicationforthesefewtitlestoappearcommercially,andeventhenthey mightstillbeabridged.Thecostisoftenfiveorsixtimeshigher.

Ask
T hatlocalauthoritiesmaintainpaymentsfortalkingbookssubscriptionssothat peoplewithsightlosscantakepartinsomethingaseverydayasashared enjoymentofreadingandliterature. 

Emotional support for newly diagnosed patients

EverydayinScotland,tenpeoplebegintolosetheirsight,butonlyatinypercentage willbeofferedcounsellingdespitetheshatteringimpactitcanhaveonpeopleslives. Sightlosscancausetrauma,affectpeoplesmentalhealthandwellbeingandimpact hugelyontheirlifestyle.Itoftenleadstounemployment,isolationanddepression. Manyhavetocometotermswiththefactthattheymightlosetheirjob,theirincome, theirmobility,theirsocialnetworkandtheirindependence.Imaginethedevastating feelingofloss! YetinScotland,atthemoment,oncesomeoneisdiagnosedwithirreversiblesightloss thereisverylittleprovisionforemotionalsupport.Thereareexcellentexamplesinsome areasbutnouniversalprovision.Forexample,inanauditofemotionalsupportservices inoneGlasgowhospital,itwasfoundthatofallpatientswhoaccessthissupport nonewerefromanethnicbackground,despitesight-threateningconditionsbeing significantlyhigherinblackandethnicpopulations. Itisestimatedthatover12,000peopleeachyearrequiresomelevelofemotionaland practicalsupport,andafurther18,000peoplerequiresignpostingtosupportservices. Andsightlossisprojectedtoalmostdoubleoverthenexttwodecades! RNIBScotlandisworkingtoestablishanetworkofVisionSupportServicesinScotlands eyeclinics.Thiswilloffernewlydiagnosedpeopleadedicatedandsympatheticsupport, andactasasignposttotheotherservicesavailabletosupportthem,bothemotionally andpractically,inadjustingtotheirnewcircumstances.

Ask
T hatlocalauthoritiesworkwiththeirpartnerstoensurethatnoonenewly diagnosedwithsightlossisleftwithoutaccesstoemotionalsupportthrougha localVisionSupportService. 

Learning disability and sight loss

Peoplewithlearningdisabilitieshaveaveryhighprobabilityestimatedtobe80per centofexperiencingsightloss. Thishasamajorimpactontheindividualsqualityoflifebutalsoonthecarepackage thatmustbeprovidedbylocalauthorities. Thereare11,000Scotswithlearningdisabilitieswhohavesomeformofsightlossbut fartoofewhavehadtheirvisionassessedortheircarepackageconfiguredtotakethis intoaccount. Yetifsocialcarecanidentifysightlossandadapttheindividualscarepackagetotake accountofit,itishighlylikelytosavemoneyinthelongerterm. RNIBScotlandiscampaigningforaformalvisionassessmenttobepartofsocialwork andhealthassessmentsforallpeoplewithalearningdisability. WearecallingonlocalauthoritiesacrossScotlandtoidentifyandtrainVision Championstolinkpeoplewithalearningdisabilitytocommunityoptometriststo ensurecomprehensiveandregulareyeexaminations.

Ask
T hatlocalauthoritiesworkwithhealthboardsandtheScottishGovernment toensurethatpeoplewithalearningdisabilityreceiveasighttestaspartof theircare. 

Income maximisation
ManypeoplewithsightlossfacedrasticcutstotheirincomeunderGovernmentplans tosaveupto18billionfromwelfarebenefits,eventhoughanestimated70percent alreadyliveinpoverty.AsignificantproportionofScotlandsblackandminorityethnic populaton,forexample,liveinareasofhighdeprivation. Benefitswillbereceivedbyfewerpeople,insomecasesforashortertime,andwillin futurebeupratedinlinewiththeConsumerPriceIndex.Soincomeswillnolongerkeep upwiththecostofliving.Aswellasthis,cutstopublicservicesmeanthesupportmany havereliedoncouldberationedorwithdrawn. Thatswhyitisessentialthatblindandpartiallysightedpeoplehaveexpertadvice tohelpmaximisetheirincomes.Thebenefitssystemcanbeextremelybureaucratic, especiallyifyouhavedifficultyseeing(oneclaimform,forexample,runsto39pages). Peoplewithsightlossmayalsoqualifyforhousingandcounciltaxbenefit.Other concessionsforthoseregisteredblindincludefreerailandbustraveland50percent offTVlicencefees.Thesecouldmeanhugesavingsbutonlyifpeopleknowabout them. Localauthoritieswouldalsobenefitfrompeoplehavingmoremoneytospendinthe localeconomyasthevastmajorityreceivingwelfarepaymentsspenditlocally. Butadviserswillhavetobetrainedtoadvocatecasesagainsttightereligibilitycriteriain acontractingwelfaresystem.

Asks
L ocalauthoritiestoensureexpertadviceandsupportisavailablesothatpeople withsightloss,andotherdisabilities,areabletomaximisetheincometheyare entitledtosotheycanlivewithindependenceanddignity. T oconsiderthedevelopmentofaNationalIncomeMaximisationcentrewiththe purposeofprovidingexpertadvicetodisabledpeopleontheirwelfarerights. P artneringwithlocalorganisationswhoworkwithdiversecommunitiestoensure thatmorepeoplecanbesignpostedtotherightsupportforthem. 

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Haggeye Stop and Stare campaign

AsaforumsupportingblindandpartiallysightedyoungpeopleinScotland,oneof Haggeyeskeymessagesisinclusion.Webelievethatallyoungpeopleshouldhavethe opportunitytolearnaboutthebarriersfacedbythosewithdisabilities. Article28oftheUnitedNationsConventionontheRightsoftheChildstates: everychildhastherighttoaneducationinwhichtheyfeelincluded.Howeverthe experienceofHaggeyemembersisthatpeopleareusuallymisinformedorhavea genuinelackofunderstandingaboutdisability. HaggeyehasdevelopedaneducationaltoolkitStopandStaretoexplaintheissues thatblindandpartiallysightedyoungpeopleexperience. OneHaggeyememberrecallshowraisingawarenessendedtheverbalbullyingshewas experiencingatschool. Thebullyinghadbeengoingonforawhileandthereasonwassimplythatmypeers didntunderstandwhatlivingwithsightlosswaslike.Theyalsodidnotunderstandmy sightlosscondition.Butbytakingthetimetoexplainthis,thebullyingstopped.

Ask
T hatlocalauthoritiesembedinclusionattheheartofschoolgovernance,togive allpupilsabetterunderstandingofthenatureofdisability.  

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Contact us
Forfurtherinformation,pleasecontactJamesAdamsatRNIBScotlandon 07508040042oremailjames.adams@rnib.org.uk RNIBScotland 1214HillsideCrescent Edinburgh,EH75EA rnib.org.uk/scotland RNIBMarch2012 Registeredcharitynumber226227.ScottishregisteredcharitynumberSCO39316