Telecare and sensory impairmentUsing telecare effectively in the support of people with sensory impairments

Telecare and sensory impairmentUsing telecare effectively in the support of people with sensory impairments

Editorial team

Brian Kerr NationalTelecareDevelopmentProgramme

Colm Cunningham DirectorofOperations,DementiaServicesDevelopmentCentre

Dr Suzanne Martin Lecturer,OccupationalTherapy,UniversityofUlster

Maria Dick Manager,ForthValleySensoryCentre,Falkirk

Acknowledgements

TheeditorswouldliketothankMariaDick(Manager,ForthValleySensoryCen-tre,Falkirk)fordevelopingthecontentofchapters4and5.Additionalcontentwaswrittenbytheeditorialteam.ThanksarealsoduetoFionaTaylor(NorthLanarkshireCouncil)forherworkwiththeDementiaServicesDevelopmentCentreinproducingUsing electronic assistive technology to support people with dementia1,whichprovidedthemodelforthisseries.Maincoverphotographbywww.tonymarshphotography.com.

DSDC/JIT2010

DementiaServicesDevelopmentCentreIrisMurdochBuildingUniversityofStirlingStirlingFK94LA

t 01786467740e dementia@stir.ac.ukw www.dementia.stir.ac.uk

JointImprovementTeamArea3ER,StAndrewsHouseRegentRoadEdinburghEH13DG

t 01312443535e jit@scotland.gsi.gov.ukw www.jitscotland.org.uk

ISBN9781857692457

Theinformationcontainedwithinthispublicationis,andremains,thepropertyoftheDementiaServicesDevelopmentCentre,UniversityofStirlingandtheJointImprovementTeam,ScottishGovernment.Anypartofthepublicationmaybereproducedforthepurposeofdeliveringatrainingcourse,aslongasthesourceoftheinformationisacknowledged.

CopiesofthisdocumentareavailableinalternativeformatsonrequestbycontactingtheJointImprovementTeamattheaddressabove.

ContentsPreface 41: Introduction 5

Definitions: what is telecare? 5Telecare as part of a personalised service 7Telecare services 8Risk and reliability 8Access and availability 9

2: Assessment 10General and specialist assessment of need 10Specialist assessments 11Risk assessment 11Using telecare to enhance assessment 12Carers assessment 12

3: Principles, rights and ethics 134: Telecare and sensory impairment 17

Definitions: whom are we talking about? 17Incidence rates 18The needs of people with sensory impairment 18Telecare as part of a response 19Examples of telecare for people with sensory impairment 19Case studies 23Issues to consider 27Issues for carers and for care and support staff 27

5: Training programme 29Aim 29Objectives 29Timetable 29

Handout A: Communication and guiding someone with a visual impairment 33

Handout B: Causes of deafness 34Handout C: Clear communication principles 34Handout D: The 20 losses of blindness 35Additional resources* 36Supplier contact details 38References 40

4

Preface

Thisbookexploreshowtelecarecancontributetothesupport,protection,andqualityoflifeofpeoplewithasensoryimpairment.Italsoconsiderstheimportanceoftelecareinprovidingsupportandreassurancetocarers.

ThisisoneofanumberofpublicationsfundedbytheScottishGovernmentsNationalTelecareDevelopmentProgramme2,inpursuitofthestrategicgoalofraisingawarenessoftheimportanceoftelecareincontemporaryhealthandsocialcareservices.Theotherbooksinthisseriesare:

Telecareanddementiausingtelecareeffectivelyinthesupportofpeoplewithdementia

Telecareandphysicaldisabilityusingtelecareeffectivelyinthesupportofpeoplewithseverephysicaldisabilitiesandlong-termchronicconditions

Telecareandlearningdisabilityusingtelecareeffectivelyinthesupportofpeoplewithlearningdisabilities

Thebooksarewrittenforassessors,careandsupportstaffandtheirmanagers,telecareservicemanagersanddevelopmentstaff.Seniormanagersshouldalsofindthemusefulininformingserviceplanning,andtheyshouldhelpraiseawareness,expectationsandgenerallyadvanceunderstandingamongserviceusersandcarers.

Eachbookalsocontainscasestudiesandatrainingprogrammeintendedtohelptrainerswhendesigningbothawareness-raisingandskill-developmentprogrammes.Programmedirectorsresponsibleforbasicandpost-basicpro-grammesfornurses,housingstaff,socialworkersoroccupationaltherapistsshouldconsidertheseasasoundbasisforamoduleontelecare.

Examplesofequipmentwhichmightcontributetothesafetyandqualityoflifeofthepersonutilisingtelecarearefeaturedineachbook.Theaimistosupportreadersbyprovidinginformationonsomeofthewiderangeoftelecareproductsavailable.Thebooksdonotendorseanyspecificproductorsupplier,butprovideexamplesofwhatiscurrentlycommerciallyavailableoremergingontothemarket.Wherepossible,detailsofsuppliers/manufacturershavebeenprovidedattheendofeachbook.

As we grow older and take on caring responsibilities or become disabled, technology can help us maintain our independence and quality of life.

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1: Introduction

Weallrelyincreasinglyontechnologyinalmosteveryaspectofourlives.Withinourhomes,devicessuchasmicrowaves,DVDplayersandflatscreenTVsenhancethequalityofourlivesandreducetheamountoftimewespendonthedrudgeryofhousework.Werelyoncomputersandmobilephonesforinformation,socialcontactandentertainment,andtohelpusmakeinformedchoicesaboutpurchasesandservices.Awayfromhome,technologysuchasGPS(globalpositioningsystems)andsatnav(satellitenavigation)oftenincorporatedintoourmobilephoneshasthepotentialtoguideus,keepusintouch,andkeepussafe.

Peoplewhoaremorevulnerableanddependentbecauseofsensoryimpair-mentoughttohavethesameaccessto,andbenefitsfrom,thisincreasinglycheapandaccessibletechnology.Aswegrowolderandtakeoncaringresponsi-bilitiesorbecomedisabled,technologycanhelpusmaintainourindependenceandqualityoflife.Itcanalsoovercomesomeofthelimitationsofspecificcondi-tions.Onepurposeofthisbookistoraiseawarenessoftheseissuesandprovidepracticalguidanceonhowtointroducetechnologytopotentialserviceusers.

Demographicchange,andthekeysocialpolicyagendaofshiftingthebal-anceofcarefrominstitutionstocareathomeandinthecommunity3,alsorequiresustomaximisethebenefitsoftechnology.Thereisnowplentyofevidencetoshowthattelecarecanreleasesignificantresourcesfromwithinhealthandsocialcaresystemsandfacilitatechangesinthebalanceofcare4.Italsohasthepotentialtoimproveimportantoutcomessuchasindependenceandfeelingsofsafety.

Thisbookwilloutlinehowtelecarecancontributetoimprovedoutcomesforserviceusers.Itincludessectionson:

definitionsoftelecare(alongwiththerelatedconceptsoftelehealth,assistivetechnology,environmentalcontrols,andtelehealthcare)

theimportanceofgoodneedsandriskassessmentiftelecareistohelpmeetthoseneedsandmanagethoserisks

ethicaldilemmasandhowthesecanberesolved howneedsmaybemetusingtelecareaspart

ofapackageofcareandsupport issuesparticulartocarers casestudiesandanoutlinetrainingprogramme

Definitions: what is telecare?

Inthisbookthetermtelecareisusedtodescribetheuseofequipmentwithinandoutwiththehometomonitorchangingneedsandrisks,andtoprovidealertsandinformationthatenableimprovedandinformedresponsestothoseneedsandrisks.

Demographic change, and the key social policy agenda of shifting the balance of care from institutions to care at home in the community, requires us to maximise the benefits of technology.

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ThedefinitionbelowistheoneusedintheNationalTelecareDevelopmentProgrammeinScotland.Itformspartofthesharedvocabulary5agreedandpublishedbytheScottishGovernment,andisconsistentwithdefinitionsusedintheEnglishandWelshdevelopmentprogrammes.

Telecare is the remote or enhanced delivery of health and social services to people in their own home by means of telecommunications and computerised systems Telecare usually refers to equipment and detectors that provide continuous, automatic and remote monitoring of care needs, emergencies and lifestyle changes, using information and communication technology (ICT) to trigger human responses, or shut down equipment to prevent hazards

First, second and third generation telecare

Thereisawiderangeoftelecareequipment,andthescopeandsophisticationofapplicationshasdevelopedconsiderablyoverthelast25years.Thefollowinginformalclassification,basedongenerations,providesawayofdistinguishingbetweendifferentstagesofdevelopmentandapplication.

First generation telecarereferstoequipmentthatformspartofmostcom-munityalarmservices.Itisusedtodescribeuser-activatedalarmcalls(bypushbutton,pendantorpullcord)toacontrolcentrewhereacallhandlercanorganisearesponseofsomekind.Thisisusuallyviaaneighbour,relativeorfriendactingasakey-holder.

Second generation telecareevolvedfromtheintroductionintobasiccommunityalarmservicesofsensorssuchassmoke,gas,heatandflooddetectors.Secondgenerationtelecarenowincludessensorswhichcanmonitornotjustthehomeenvironment,butaspectsoflifestyle,physiologicalmeasuresandvitalsigns.Thesesensorscancollectandcontinuouslytransmitinformationsuchaswhendoorsareopened,whethertapsarerunningandtheuseofelectricalappliances.Throughpassiveinfraredsensors(knownasPIRs),movementbothwithinandoutwiththehomecanbedetected.Thisprovidesmuchmoresophisticatedandcomprehensivesupportformanagingriskandimprovingqualityoflife.Secondgenerationtelecarecanalsobeusedtoprovidedataaboutsomeoneslifestyle,movementsandroutines,whichcanbeusedforneedsassessments.

Third generation telecaredevelopedfromimprovedandincreasedavailabilityofbroadband,wirelessandaudio-visualtechnology.Itoffersthepotentialforvirtualortele-consultationsbetweentheserviceuserandtheirdoctor,nurseorsupportworker,thusreducingtheneedforhomevisitsorhospitalappoint-ments.Furthermore,itprovidesincreasedopportunitiesforpeople(particularlythoseunabletoleavetheirhomesalone)tovisitlibraries,shopsandmaintaincontactwithfamilyandfriends.6

Telehealth

Inthisbookthetermtelehealthreferstotheuseofmonitoringandmeasuringdevicestocollectinformationaboutvitalsigns(suchastemperature,bloodpressureandbloodsugarlevel),symptomsorhealthconditionsinthepatients

There is a wide range of telecare equipment, and the scope and sophistication of applications has developed considerably over the last 25 years.

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home.Thisinformationcanthenbetransmittedfromthedevicetoacallhan-dler,nurse,orotherclinician,whocanthenadvisethepatientbyphone,textoremailonhowtomanagetheirsymptomsandcondition.Clinicianscanbealertedtosignificantchangesinapatientscondition,andthepatientadvisedorreassuredappropriately.Thiscantakeplacewithouttheneedforahomevisit,visittoasurgery,orotherconsultation.Telehealthisoftenusedtoenablepeopletomanagechronicconditions,forexamplehighbloodpressureordiabetes.

Telehealthcare

TheScottishGovernmenthaspublishedapaperonlong-termconditions7whichincludesadefinitionoftelehealthcare,illustratinghowthistermemphasisesaholisticapproachtotheperson,whoshouldbeatthecentreoftheservice:

There is increasing convergence between telehealth and telecare, with the introduction and expansion of remote monitoring as part of the telehealthcare package available in a persons home Telehealthcare offers a range of care options remotely via phones, mobiles, broadband and videoconferencing It can improve the patients experience of care by reducing the need for travel to major cities and hospitals to receive care and treatment It has been used successfully to provide treatment for dermatological, cardiac and neurological conditions It enables care to be delivered in remote communities, allows GPs to consult specialists remotely to avoid unnecessary referrals and enables networks of learning for clinicians and maximisation of skill mix for teams

Assistive technology

Assistivetechnologyisanothercollectivetermfordevicesforpersonalusedesignedtoenhancethephysical,sensory,andcognitiveabilitiesofpeoplewithdisabilitiestohelpthemfunctionmoreindependently.

Environmental controls

Environmentalcontrolsareequipmentsystemsthatenablepeoplewithhigherlevelsofphysicalimpairmentorchronichealthproblemstocontrolaccesstotheirhome,tosummonemergencyhelpandtooperatedomesticappli-ances.Forinstance,asingleremotecontrolunitcanenableawheelchairusertocontroltemperatureandopenandclosewindows,curtainsanddoors(inadditiontothemoreconventionalfunctionsofcontrollingTVs,DVDplayers,andaudioequipment).

Telecare as part of a personalised service

Telecareshouldnotbeseenasthesolution,asingleone-dimensionalresponsetoneedsorrisk.Itisnotanalternativetodirectcarebycarers,althoughitcanreducetheneedforcheckvisits,supervision,orvisitstoclinics(suchscenarioswillbeexploredlaterinthisbook).Telecareiseffectivewhenitformspartofapersonalisedprogrammeorpackageofcareandsupport,andisacceptedassuchbytheserviceuser,theirinformalcarersandotherstaff/services.

Telecare is not an alternative to direct care by carers, although it can reduce the need for check visits, supervision, or visits to clinics.

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Tobeeffectivetelecarerequires:

informed,skilledandpersonalisedoutcomes-focusedassessmentofneedsandrisk

resolutionofethicaldilemmasaroundcapacity,informedconsentandchoice(foreachindividualineachsituation)

trainingandeducationfortheserviceuser,carers,personalcareandsupportstaffinhowtheequipmentcanbeusedormisusedandhowitshouldbetestedandmaintained(forexample,batteryreplacement)

Telecare services

Sofar,thisintroductionhasonlydiscussedequipment.Thetermtelecareserv-icessetsthedeliveryofequipmentinthewidercontextofhealthandsocialcareservices.Inapracticalsense,thismeansefficient,up-to-datemonitor-ingorcallcentreswithtrainedstaffwhohaveaccesstopersonalhealthandsocialcaredataandresponseprotocols.Thesestaffwillbeavailableeverydayoftheyear,andwillbeskilledinmakingjudgementsabouttheinformationandalertssentbytheequipment,andinfacilitatingthemostappropriateresponsepossible.Suchcentresareabsolutelyessentialtotheeffectiveuseofmosttelecareequipment.Whiledifferentagenciesmayorganisetheircallhandlingormonitoringstaffindifferentways,thepresenceofsomeonewhocaninterprettheinformation,providereassurance,followdetailedindividualprotocols,andunderstandthebasicsofhowequipmentworksisessentialtoensuringthemaximumbenefittotheserviceuser.

Appropriateresponsearrangementsmustalsobeinplace,incorporatingindividualisedresponseprotocolswhichensurethebestpossibleresponsetotheimmediateneedorsituation.Traditionallythishasreliedonkey-holdersrelativesorneighbourswho,whencontactedbythecallcentre,wouldcallontheserviceuserandsolvetheproblemorcontactservicesasnecessary.Increasingly,inresponsetohigherlevelsofdependenceandmorecomplexneeds,agenciesaredeployingteamsoftrainedcarers,whocanrespondtoanemergencyandprovidepersonalcare,reassurance,orcontactotheremergencyservicesasnecessary.

Inorderfortelecareservicestohavemaximumimpactonwiderpolicygoalssuchaschangingthebalanceofcare,theyneedtobeconceivedaspartof,andlocatedwithin,localhealthandsocialcarestrategiesfordifferentclientandpatientgroups.Serviceplannersneedtoarticulatehowtelecaredevelopmentswillenhancehomecareandhousingsupportservicesnotasanadd-on,butasanintegralpartofhealthandsocialcareserviceoptions.

Risk and reliability

Noequipmentcanbe100percentreliableforever,inthesamewaythatnohumanserviceiscompletelyandconsistentlyreliable.Equipmentwillcomewithamanufacturersguarantee,butintheeventofafaultanengineerwillneedtobecalledout,andtheremaythereforebegapsinserviceprovision,evenwhenmonitoringisrequired24/7.Equipmentwhichreliesonmobilephonesignals,internetaccessorlandlinestotransmitinformationwill,onoccasion,experiencethelapsesinservicethataffectthesesystems.Tocoun-tertheserisks,telecareservicesneedtoincludebackup,testingandbusiness

To be effective, telecare requires aninformed, skilled and personalised outcomes-focused assessment of needs and risk.

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continuityarrangements(althoughofcourseequipmentpurchasedprivatelywillnothavethesesafeguardsasstandard).

Interoperabilityisasignificantissue.Thisreferstotheproblemsthatarisewhenequipmentdevelopedbyonemanufacturerdoesnotworkwiththecallhandlingormonitoringsystemwhichisalreadyinplace,andwhichwasmadebyanothercompany.Progresshasbeenmadeinresolvingthisissue,partlyduetotheintroductionofanew(voluntary)BritishStandard8.However,inter-operabilityremainsaproblem,especiallywhenequipmentdoesnotcomplywiththisstandard.

Itisveryimportantthattheseissuesaretakenintoaccountwhencarepack-agesarebeingputtogetherthroughtheuseofproperriskassessmentsandappropriateriskmanagementarrangements.

Access and availability

Thisbookincludesexamplesofequipmentthathas thepotentialtocontributetothesafetyandqualityoflifeofpeopleinneed.Theexampleshavenotbeenselectedtopromotetheproductsofanyparticularcompany,butinsteadtoraiseawarenessofwhatcanbedoneandwhatis(orwillsoonbe)available.Whereaproductisfeatured,detailsofthecompanythatsellsormanufacturesithavebeenincluded(seepages38and39).

Companiesspecialisingintelecareequipmentareincreasinglyabletoper-sonalisetheirproductstomeettheneedsofindividualusers.Furthermore,theyrecognisetheimportanceofdevelopingnewapplicationsfromthisstartingpoint.Manufacturerswouldarguewithsomejustificationthatthescopeofwhattelecareequipmentcandoislimitedbyourimagination,ratherthanbythetechnology.Thecostofequipmentisfalling,andpublicbodiesnowhaveprocurementarrangementsinplacewhichshouldfurtherreducethiscost.Inaddition,companieswelcomecontactwithserviceusersandprofessionalstohelpthemunderstandneedswhichmightbemetthroughnewapplications.

Sometelehealthequipmentbloodpressuremonitors,forexamplecanbeboughtonthehighstreet,andthisisatrendthatislikelytoincreaseasexpectationsandunderstandingofthepotentialoftelecareincreases.How-ever,animportantpartofatelecareserviceistheresponse.Thereneedstobesomewayinwhichtheinformationoralertgeneratedbytheequipmentcanbetransmittedtosomeonewiththeskillsandtechnologytogenerateafastandappropriateresponse.

Themajorprovidersoftelecareservicesarelocalauthoritiesincreasinglyinpartnershipwithhealthauthorities.Purchasingbudgetsare(orshouldbe)availabletoenablepractitionerstoaccessequipmentaspartofacareandsup-portpackage.Alternatively,serviceusersshouldbeabletopurchaseequipmentusingtheirindividualbudgets,ordirectpayments.Inrecentyearsbudgetshavebeenenhancedbygovernmenttelecaresupportgrants,andalthoughsomeoftheseschemesmaynowbecomingtoanend,healthandsocialcarepartnershipswillcontinuetoexploremeansoftransferringresourcessothattelecarecandevelopfurtherusingthesavingsgenerated.

Oneconsequenceofthedevelopmentintelecareservicesoverrecentyearsisthatmanyauthoritieshaverecruitedtelecarecoordinators,orhavedesignatedtelecarechampionswithinlocalservices.Thesestaffcanadviseonavailabilityandaccess,andshouldfindthesebookshelpfulintheirtaskofpromotingtheuseoftelecareamongdifferentclientandpatientgroups.

Telecare equipment needs to be complemented by up-to-date monitoring or call centres with trained staff who have access to personal health and social care data and response protocols.

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2: Assessment

Aneffectiveandefficientoutcomes-focusedneedsassessmentisessentialifthepotentialoftelecareistobemaximised.Atitsbest,telecareformspartofanindividual(personalised)packageofcareandsupport.Toachievethis,individualneedsmustbeidentifiedandtelecarethenconsideredaspartofthepotentialpersonalisedresponse.

General and specialist assessment of need

ThroughouttheUnitedKingdom,communitycareneedsassessmentisnowconceivedofasamultidisciplinaryprocess9101112.InScotland,muchworkhasbeendonetoencouragetheuseofsharedassessments13whichgathercoredataoneachindividual(suchastheirname,ageandethnicgroup)alongwithinformationonphysical,psychological,spiritual,andphysiologicalneeds.Theprocessinvolvesskilledinterviewingtoelicitwhatthepersonsneedsare,andwhattheirperceptionofthoseneedsisatthattime.Thereisanopportunityforarelativeorclosefriendwhoisacarertocontributewiththepermissionoftheperson.Theassessmentconcludeswithasummaryofneeds,followedbyproposalsformeetingthemimmediately(wherenecessary)and/oraspartofaplannedprogrammeofcare.(Thiswillbedependentonresourcesbeingavailableandoneligibilitycriteria.)

Thepossibilityofutilisingtelecareshouldbeintroducedduringtheassess-mentphase.Justasthepersonsneedforhomecare,aidsoradaptation,counsellingordayservicesisconsidered,questionsintheassessmentform oughttotriggeradiscussionoftelecare.Duringtheassessmentitself,itisessen-tialtoexplainwhattelecareis,usinglanguagethepersonwillunderstandandcanrelateto.Oneapproachistostartwiththe(universallyfamiliar)communityalarmservice,thenmovetoageneraldiscussionofenvironmentalmonitor-ingequipment(floodandsmokedetectorsforexample),beforemovingontopersonalsafetyandhealthmonitors,whereappropriate.Atthisstagetheassessorwillbeconsideringthepotentialcontributionoftelecareingeneralterms,aswellasintroducingtheconcepttothepersonandtheircarer(s).

Insomeareas,acorepackageisofferedtoanyonewithcommunitycareneeds.Thismightconsistofacommunityalarmandsmokeandflooddetec-tors,alongwithasecuritydeviceforthefrontdoor.Increasingly,inneworrefurbishedsupportedorshelteredhousingschemes,suchequipmentisinstalledroutinely.Opinionisdividedonwhethersuchanapproachiscost-effectiveornot.Bethatasitmay,itdoesnotobviatetheneedforindividualneedsassessmentswhichwillensurethatanyadditionalequipmentwillmeetidentifiedneeds.

Allassessmentdocumentationshouldthereforeincludeasectionpromptingtheassessortoconsidertelecareaspartofthetotalresponse.Itisalsoimpor-tantthattheassessorhasaccesstoinformationleafletsdetailingtherangeof

At its best, telecare forms part of a personalised package of care and support.

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telecarethatisavailablelocally,whatitisforandwhoiseligiblealongwithanycostswhichneedtobemetbytheserviceuser.

Iftheassessorbelievesthattelecarecanformpartoftheresponseandthepersonagrees,amoredetailedassessmentisthenrequired.Thisshouldincludetheprecisecombinationofdeviceswhichcanbestmeet(incombinationwithotherservices)thepersonsneeds,aswellasclarifyingissuesaroundinstalla-tionandresponse.Thisstageisoftenreferredtoasthespecialistassessment.

Specialist assessments

Thissecondaryassessmentstageisdesignedtopersonalisetheprovisionoftelecarebyidentifyingitemsofequipmentthatappeartobestmeettheper-sonsneeds.Atthisstageadditionalfactorssuchasthedesignofthepropertyandtheavailabilityoftelephonelines,wirelessnetworksandmobilephonesignalswillneedtobeconsidered.Thepersonsfamiliaritywithelectronicequipmentwillalsobetakenintoaccount,alongwithanyothertelecareequip-mentalreadyinstalled.Inaddition,theirroutine(forexamplewhentheyliketogotobedandtheirsleepingpattern)willalsoberecordedtoensurethattheequipmentsupportsthelifestyleanddegreeofindependencetheywant.Finally,theintegrationoftheequipmentwiththerestofthesupportpackage,andtheneedforandavailabilityofaresponse,willallhavetobedetailed.

Thereisnobestwayofcarryingoutaspecialistassessment.Howitiscarriedout,andbywhom,islikelytodependonlocalarrangements.Insomeareas,atelecarechampionwillhavebeenidentifiedwithinthecommunitycareteam.Thispersonwillhavereceivedadditionaltrainingintelecareandregularupdatesontherangeofequipmentavailable.Oneoftheirresponsibilitieswillbetoundertakethisspecialiststageoftheassessment,orperhapstosuperviseandguideotherteamstaffwhensuchanassessmentisneeded.

Inotherareasthistaskiscarriedoutbyadedicatedtelecareservice.Thisgroupwillincludestaffwhocarryoutthecallhandling,monitoringandinstalla-tionfunctions,andtheywillhavelinkstoanyresponseservice.Themanageroftheservice,oradesignatedperson,willbeaskedtotakeforwardthespecialistassessmentandcarryoutanyinstallationthatisnecessary.

Risk assessment

Riskassessmentisacriticalcomponentofagoodneedsassessment.Ittakesintoaccountthedegreeofriskexperiencedbytheperson,therebyidentifyingwaysinwhichtelecarecanassistinthemanagementofrisk(bythepersonthemselves,aswellasbyservices).Itincludesrisksinthehomeaswellasout-side.Thesemayincluderisks:

offireifthecookerislefton offloodifthebathwaterisleftrunning ofscaldinginover-hotbathwater ofunwelcomevisitors ofgettinglost ofharassment ofhatecrime

Shared assessments gather core data, such as the persons name, age and ethnic group, along with information on physical, psychological, spiritual, and physiological needs.

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Themostbasicequipment,suchasflood,smokeandcarbonmonoxidedetec-tors,reducesriskinobviousways.Forpeoplewithcognitiveimpairments(forexamplearisingfrombraininjury)andsomesensoryimpairments,goingoutsideandtravellingcanbeparticularlyrisky.Ifthenatureofsuchrisksisidentified,thenappropriateequipmentcanbeselected.Thisprocessisillus-tratedinlatersectionsofthebook.

Whiletelecarecanbeimportantinthemanagementofrisk,itcannotelimi-nateriskcompletely.Noequipmentyetdevisedis100percentreliable.Routinetestingandmaintenance(forinstancebatterychanges)areessentialtomax-imisereliability.Evenso,malfunctionscanoccur.Serviceusersormoreoftentheirfriends,childrenorgrandchildren!mayinadvertentlytriggerordisablealarms,andmonitoringcentreswillnotalwaysbeawareofthis.Soitisimportanttoallowforreliabilityandhumanerrorinanyriskmanagementplan.

Using telecare to enhance assessment

Somecompanieshavedevelopedequipmentwhichcanlogdetailedinfor-mationaboutapersonsmovement,lifestyleandroutineswithintheirhome.Thisisusedforneedsandriskassessmentpurposes,asdistinctfromsafety.AnexampleisJustChecking14,aportableactivity-monitoringsystemdesignedforpeoplewithdementia(althoughnotnecessarilylimitedtothatgroup).Smallwirelessmovementsensorsaretriggeredasthepersonmovesaroundtheirhome.Thesegenerateanactivitychartwhichcanbeaccessedviaasecureweb-site.Thisverydetailedtimeddatacanprovideamuchmoreaccuratepictureofalifestylethanispossiblefromconversationwithapersonwithcognitiveimpairment,orfromcarerswhodonotliveon-site.Support,protectionandcarearrangementscanthenbetargetedmoreaccuratelyinaperson-centredway.

Carers assessment

InScotlandthereisnowadutytoofferinformalcarersanassessmentoftheirneedsarisingfromtheircaringresponsibilities.Thisfocusesonhowtheycanbehelpedtosustaintheircontributiontothecareofapersoninneed15.Researchhasconfirmedtheextenttowhichtelecarecanreducepressureoncarers;supportthemintheircaringrole;increasepeaceofmindaboutthesafetyandwellbeingofthepersontheycarefor;andenablethemtosleepbetter16.Itfol-lowsthatagoodcarersassessmentwillincludeconsiderationofthepotentialoftelecaretoindirectlybenefitcarersbyhelpingthemcontinuetocare.

Recentresearchconfirms,however,thatmanycarersareunawareoftheavailabilityoftelecare.Itcannotbeassumedthatcarersespeciallynewcar-erswillbeawareofthepossibilitiestelecareoffers.Equally,carerswillhavetheirownanxieties,andperhapsguilt,aboutusingtechnology.Theymaybeconcernedaboutitsreliabilityorwhethertheywillunderstanditandbeabletomakeitwork.Theseissueswillbeconsideredinmoredetailinlaterchaptersofthisbook.Atthispointitisimportanttoemphasisethatinformationneedstobemadeavailabletocarers,andthatwhereacarersviewsaresoughtattheneedsassessmentstagetheirperspectiveandneedsshouldbeincludedandrecorded.17

Research confirms that many carers are unaware of the availability of telecare.

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3: Principles, rights and ethics

Thepreviouschapterdescribedtheimportanceofcarryingoutacarefulneedsandriskassessmentbeforeintroducingtelecare.However,whilegoodassessmentwillensurethattheuseoftelecareisperson-centredandneeds-led,itwillnotnecessarilyanswerthequestionofwhethertelecareisrightforanindividual.

Asanexample,considertheneedsofapersonwithDownssyndromewhoisintheearlystagesofdementia.TheassessmentprocessmayindicatethataGPS-enabledwristwatchcouldreducethepersonsexposuretoriskwhensheiswayfromhome.Itwillenablehercarersandacontrolcentretopinpointheratanytimesothattheycanorganisehelpifshebecomeslostorexperi-encesharassment.Butthedevicecouldalsobeusedtorestrictherfreedomtogowhereshepleases,whichisafundamentalhumanright.Thetelecaredevicecouldbeperceivedasakindofelectronictag,andthishasassociationswithsurveillanceandthecriminaljusticesystem.Seeninthislight,theethicalquestionsassociatedwithtelecarearemoresharplyexposed.

Itmaybedifficulttocomprehensivelyestablishtheneedsandrisksofapersonwhocouldbenefitfromtelecare,whethertheyhavedementia,abraininjury,orsignificantsensoryimpairment.Tocarryoutaneffectiveassessment,asystemlikeJustChecking18mightbeintroducedtotheirhomeonatempo-rarybasis.Thiswillprovidecomprehensivedataonthepersonsmovementsandroutines,includingeating,sleepingandtoileting.Althoughtheresultingassessmentwillbeverywell-informed,thisdoesnotnecessarilyjustifytheinvasionofprivacythatisalsoinvolved.SimilardilemmasarisewiththeuseofsystemssuchasBetavistawhichallowcontrolcentreoperatorstoseethepersonintheirownhome(albeitwhenanalertistriggered),aswellastalktothemonaphoneline.

Ethicaldilemmassuchastheseshouldbeconsideredusingthecasestudiesfeaturedlaterinthisbook.Thepurposeofthischapteristobrieflydescribeanethicalapproachtotelecare,summarisesomeprincipleswhichneedtobeconsideredwhendecisionsarebeingmade,lookattherelevantlegislationandprovidesomehintsforpractice.

Itisimportanttostressfourthingsattheoutset:

eachpersonsneeds,choicesandbeliefsmustbeafundamentalconsiderationinanydecision

therearefewabsoluterightsandwrongswhichcanbeuniversallyappliedtoeverysituation

ethicalissuesarenotuniquetotelecare.Indeed,theprinciples,valuesandlegalobligationsdiscussedhereapplytoothercareandsupportsettings

nooneactsinavalue-freeorvalue-neutralwayweallhaveourvaluepositions.Theimportantissueisunderstandingthese,articulatingthemasnecessary(particularlytoserviceusersandcarers)and

This chapter describes an ethical approach to telecare and includes an overview of the relevant legislation and some hints for practice.

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understandingandthinkingthroughanyconflictthatmayemergewiththevaluesofothers,particularlyserviceusersandcarers

Personal value systems

Wealltakeupvaluepositionsandhaveopinionsonissueslikethesmokingban,howchildrenshouldbedisciplinedandcapitalpunishment.Somepeo-pleconsidertheseissuestobecommonsenseorobvious,butinpracticetheyarecomplex.Ourpersonalvaluesareinfluencedbythewaywewerebroughtup,oureducation,theapparentvaluesofourcommunityandbyourlifeexperiences.Forthoseworkingincareandsupportservices,therearealsoourprofessionalvalues.Theseareoftenexpressedthroughcodesofpractice19andfeatureprominentlyinourprofessionaleducationateverylevel.Asaresultwelearnandtrytointegrateintoourpracticecoreval-uessuchasacommitmenttoconfidentiality,treatingpeoplewithrespect,maintainingdignityandindividuality,andchallengingracism,discriminationandinjustice.

Itisimportantthatpractitionersareawareofthesevalues,andhowtheycometobepartoftheirownvaluesystem.Itisalsoimportanttoappreciatethattheymaynotalwaysbesharedbyindividualserviceusersandcarers,withtheresultantneedtoresolveconflictsthatarisefromdifferentvaluepositions.

Principles

Somewritershavedevelopedstatementsofprinciples,orethicaltheories,whichcanhelpensurethattheuseoftelecareisethicallysound.Forexample,Bjrnebyetal(1999)20haveproposedtheseprinciples:

autonomy peopleshouldbeabletodecidewhattheywanttohappenorbedonetothem

beneficenceweshouldtrytodogoodtothepeoplewecarefor non-maleficenceweshouldtrytoavoiddoingpeopleharm justicepeopleshouldbetreatedfairlyandequally

Inadditiontotheseprinciples,Bjrnebysuggeststhattheperspectivesandviewsofallthoseinvolvedintheserviceshouldbesoughtinrelationtobothitsimplementationandthelikelyimpactofitsnon-implementation.

KemshallandPritchard(1997)21highlightthevaluesandrightswhichtheybelieveunderpincommunityhealthandsocialcareservices.Theseinclude:

acommitmenttoensuringthatallusersandcarersenjoythesamerightsofcitizenshipaseveryoneelseinthecommunity,withequalaccesstoserviceprovision,irrespectiveofgender,raceordisability

arespectfortheindependenceofindividualsandtheirrighttoself-determination,includingtakingrisks,andminimisinganyrestraintonthatfreedomofaction

aregardfortheprivacyoftheindividual,intrudingnomorethannecessarytoachievetheagreedpurpose

respectforthedignityandindividualityofeveryuserandcarer tomaximiseindividualchoiceinthetypeofservicesonoffer

andthewayinwhichthoseservicesaredelivered

When making decisions about telecare, maintaining respect for the independence of individuals and their right to self-determination including taking risks is essential.

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aresponsibilitytoprovideservicesinawaythatpromotestherealisationofanindividualsaspirationsandabilitiesinallaspectsofdailylife

Coxetal(1998)22describeasetofcorevaluesthatshouldbeincorporatedintoanyperson-centredservicedesignedforsomeonewithdementia:

thatthepersonusingtheserviceshouldhavemaximumcontrol thatrealandinformedchoiceshouldbeakeypartofanyservice thatpeoplewhouseservicesshouldbevalued

andrespectedasuniqueindividuals thatcontinuityofcareisbuiltintoservicedeliveryinaway

thatkeepsthepersonintouchwiththeirpastandpresent thatthepersonisnotdiscriminatedagainstonthebasisthatthey

havedementiaorbecauseofanyotherdifferences,andthattheyreceivetheirfairshareofgoodqualityandappropriateservices

Thesevaluesandprinciplesprovidethebasisforrulesofpracticethatwillensureanethicalapproach.

The law

InScotland,threeimportantActsofParliamenthavebeenpassedsince2000:theAdultswithIncapacity(Scotland)Act2000;theMentalHealth(CareandTreatment)(Scotland)Act2003;andtheAdultSupportandProtection(Scot-land)Act200723.Inadditiontosharingacommonpurposeofprotectingtherightsofvulnerablepeople,theseupholdacommonsetofprinciples:thatanyinterventionmustbeintendedtoprovideabenefittothepersonwhichcouldnotbereasonablyobtainedwithoutthatinterventionANDthatthisistheleastrestrictiveoptionavailable.AllthreeActsalsoincludearequire-menttoconsiderthepersonsviews,alongwiththoseofsignificantothers,likecarersandfamily.

Capacity and consent

Therewillbemanyoccasionswhentheintroductionoftelecareraisesissuesofcapacityandconsent.Theassessmentprocessmayindicatethepresenceofsignificantriskthattelecare(inconjunctionwithotherservices)hasthepoten-tialtoreduce.Despitethis,thepersonmayrefusetheserviceorbereluctanttoacceptit.Thismightbebecausetheydisagreewiththeperceptionoftheriskand/orwanttoretaintherighttochoosethewaytheylive.

Whenworkingwithpeoplewhomaybenefitfromtelecarebutalsolacksufficientcapacitytomakedecisionsaboutriskandqualityoflife,theremaybejustificationforoverrulingthesefundamentalhumanrights.However,theseareverysignificantjudgementswhichshouldbemadecarefullyandlegally.Itmaytranspirethatapersonscapacityisnotimpairedafterall,butinsteadtheirmeansofcommunication,orabilitytocommunicate,hasnotbeenproperlyconsidered.Thisisgenerallyapparentwhenthepersonhasahearingorspeechimpairment,orperhapshashadastroke,butmaybelessobviouswhenthepersonhasdementiaoralearningdisability.

Wheredecisionsaremadeonbehalfofanindividualwholacksthecapacitytomakechoicesforthemselves,thecourseofactionshouldbetime-limited,

There will be many occasions when the introduction of telecare raises issues of capacity and consent.

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regularlyreviewedandlimitedtotheparticularservicesanddecisionsunderconsideration.Suchdecisionsshouldneverbeconsideredasfinalorpermanent.

Policy and procedures

Individualagencieswillhavepolicies,proceduresandguidelinesinplacewhichensurethatstaffremainwithinthelawwhendeliveringservicesincludingtelecareservices.Implicitinthesearethevaluesoftheagency,andofthecommunitythatitseekstoserve.Forinstancetherewillbecommitmentstoequalopportunity,privacy,dignityandconfidentiality,alongsideproceduralcommitmentstolegality,cost-effectivenessandquality.

Itisvitalthatpractitionersareawareoftheseproceduresandfollowthem.Inthecontextofthischapter,practitionersshouldalsobealerttoconflictsbetweenthevaluesofusersandcarersandthevaluesoftheiragency.Theseissuesareoftenencounteredintheareaofriskandpersonalsafety.Agencieshaveadutyofcare,andinsomecasestheirpoliciesandproceduresmaycon-flictwiththeaspirationsorexpectationsoftheuser,ortheircarer.Forinstance,proceduresmayprioritisethereductionofrisk,asdistinctfromthefreedomofsomeonetotakerisksandtomaketheirowndecisions.Practitionersneedtobealerttotheseconflicts,andtomakethemexplicittousers,carersandtheirownagencymanagement.Theymustalsoensurethattheresolutionoftheconflictisrecordedaccuratelyandtransparently.

Practice guidance

Insummary,thefollowingguidanceissuggested:

beawareofyourownpersonalandprofessionalvaluesystemsandhowthesemightconflictwiththepersonyouareworkingwithandtheircarers

beawareoftheproceduresofyouragency,particularlythosewhicharedesignedtoprotectthepersonsrighttochoose,todignity,toprivacyandtoconfidentiality

ascertainasfullyaspossibletheviewsoftheperson,theircarersandotherstaffworkingwiththem.Doyouunderstandwhattheyaresayingtoyou?

arethereissuesofcapacitytoconsent?Ifso,whatarethelegalissuesaroundoverridingtheirrighttochoiceandconsent?

inwhatwaysmightthetelecaresolutionlimitthispersonsfreedomsandrights?Isthereanalternativewhichdoesnotchallengetheirrighttochoose?

howarethedecisionstobemaderecorded?Hasarecordbeenprovidedtoeveryonewhoshouldhaveone?Whenisthedecisiontobereviewed?

Practitioners need to be alert to conflicts between the values of users and carers and the values of their agency.

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4: Telecare and sensory impairment

Thischapterdescribeshowtelecarecanhelpwiththesupportandcareofpeoplewithsignificantsensoryimpairment.Itbeginswithsomedefinitions,thengoesontodiscussadvantagesandpotentialbarrierswithsuggestionsforovercomingthese,beforeoutliningsomecasestudies.Wherepossible,photographsofthepiecesofequipmentreferredtohavebeenincluded.Numbersidentifyingpicturesalsolinkintomanufacturerscontactdetailsonpages38and39.

Definitions: whom are we talking about?

Visual impairment.Thisgroupincludesanyonewhohasasignificantvisualimpairment.Thepersonmayberegisteredasblindorpartiallysighted,althoughthedefinitioncanalsoincludethosewhoareeithernotyetregisteredorwhohavechosennottoberegistered.TheWorldHealthOrganizationdefinespro-foundblindnessastheinabilitytocountfingersattenfeet,andlowvisionastheinabilitytocountfingersat20feet.24

Hard of hearing.Membersofthisgrouphaveahearingimpairmentthatisdescribedasmildormoderate.Inthemajorityofcasestheirhearinglosswillbeacquired.

Deafpeoplecanbedividedintotwogroups.Thosewhohavebeendeafened(ietheyhavelosttheirhearingsincebirth)andsousespokenandwrittenlanguage,andthosewhoarecongenitallyDeaf,whousuallydistinguishthem-selvesbyusingacapitalD.Thisgroupconsiderthemselvestohaveaseparateidentityandculture.Theyseethemselvesaspartofalinguisticminorityanddonotperceivethemselvesasbeingdisabled.TheirfirstlanguageisBSL(Brit-ishSignLanguage).Writtenlanguagemaybedifficultforthisgroup,becauseBSLhasadifferentsentencestructure.Consequently,communicationviapenandpaperisnotappropriate.

Deafblind.Thosewhoaredeafblindmayhavecongenitalsightandhearingloss,althoughinthevastmajorityofcasesthiswillbeacquired.Adeafblindpersonmayhavebeenborndeafandlateracquiredavisualimpairment;havebeenbornblindandlaterdevelopedahearingloss;orhavelostboththeirsightandhearinglaterinlife.The1988Breaking Throughreport25defineddeaf-blindnessasfollows:personsareregardedasdeafblindiftheyhaveaseveredegreeofcombinedvisualandauditoryimpairmentresultinginproblemsofcommunication,informationandmobility.Theneedsofthisgrouparecom-plexandunique.

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Incidence rates

InScotlandin200819,959peoplewereregisteredasblindand15,957aspartiallysighted,representing4.3percentofthepopulation.Thenumberofpeoplewhoarepartiallysightedappearstobegrowing,whilefiguresforthoseregisteredasblindareshowingagradualdecline.Thefiguresabovearelikelytobeanunderestimateasresearchsuggeststhatonly2533percentofthevisuallyimpairedpopulationchoosetoberegistered.Ofthosewhoare,76percentareagedover65and65percentareover7526.

Itisestimatedthatoneinsevenpeopleareaffectedbyhearingloss.Thosewithamildormoderatehearinglossmayhavedifficultyfollowingspeech.Thosewithasevereorprofoundlosswillrelyonlip-readingorBritishSignLanguagetocommunicate.InScotlandin2004therewereestimatedtobe758,000peoplewithahearingloss.Ofthose,701,000wereinthemild/mod-eratecategory,and57,000hadasevereorprofoundloss.Aswiththevisuallyimpairedpopulation,incidenceofhearingimpairmentisgreateramongolderpeople.Halfofthosewhohaveahearingimpairmentareover65,andtwothirdsareover7527.

DeafblindUKestimatesthatfourpeopleinevery10,000aredeafblind28.How-ever,itisexpectedthatthenumberofpeoplewithavisualimpairment,hearingimpairmentordualsensoryimpairmentarelikelytoincreasebyapproximately15percent29overthenexttenyearsasaresultofenvironmentalchangesandanageingpopulation.

Acknowledgingthatthenumberofpeoplewithasensoryimpairmentislikelytoincrease,theScottishExecutivepublishedCommunity care and mental health services for adults with sensory impairment in Scotland: an action planin200430.Morerecently,theScottishGovernmentendorsedtheScottishVisionStrategy31andlaunchedanimplementationplaninJune2009.Thesedocumentsrecognisetheneedforimprovedspecialistservicesforpeoplewithsensoryimpairment.

The needs of people with sensory impairment

Commonsymptomsexperiencedbythosewithasensoryimpairmentinclude:

lossofmobility withdrawalfromsociety psychologicalissues

Theimpactofsensoryimpairmentontheindividual,andthepotentialsolu-tions,varyfrompersontoperson.Ifapersonhascomplexneedstheremaybeafailuretorecognisethattheseincludeavisualimpairmentorhearingloss.Asaresult,otherfactorsmaybeusedtoexplainissuessuchasfalls,withdrawalorchangesinmood.Consequently,someofthesimplesolutionsmayneverbeimplemented.

Forthosewithvisualimpairmentordeafblindnessinparticular,anychangeinenvironmentorroutinecancausedisorientationandconfusion.Thisgener-allymeansthatitispreferableandmorereassuringforthepersontohavetheirownhomeadaptedtomeettheirchangingneeds,thantomovetoalternativeaccommodation.Installingappropriatetechnologyhasthepotentialtoallowsomeonetostayintheirownhomeandhelpthemtonavigatearounditsafely.Conversely,movingtounfamiliarsurroundingsmayincreasethelikelihoodof

The impact of sensory impairment on the individual, and the potential solutions, vary from person to person.

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falls,reduceindependence,andcruciallyincreaselevelsofdisorientationandthelikelihoodofadmissiontolong-termcare.

Oneofthemostdistressingaspectsofsightlossisthedisorientationoftimeandplace.Evenwiththeassistanceofdevicessuchastalkingclocks,itmaybedifficultforthepersontodeterminewhetheritis2pmor2am.Sleepdistur-bancecanbecomeanissue,whichinturncanleadtoconfusion.IssuesthataffectDeafandhardofhearingpeopleincludeisolationfromthecommunityandtheinabilitytocommunicateeffectivelywithotherswithouttechnology.

Telecare as part of a response

Telecarecanplayamajorpartinenablingpeoplewithsensoryimpairmentsofanykindtoliveathomesafelyandenjoyagoodqualityoflife.Itcanalsoenableaccesstotheworkplaceandallowcontinuedparticipationinthecommunity.Telecarecanhelpolderpeopleinparticulartocontinuelivingindependentlyintheirownhomewithagreaterdegreeofsafety.Advancesintechnologymeanthatpeoplewithasensoryimpairmentcannowcookindependently,beawarewhencallersareatthedoor,andbealertedtodangerssuchasfireorflood.Theycanalsomaintaintheirindependencebyreadingtheirownmail,accessinginformationthroughtheinternetandcontinuingtousetelevisionandradioforbothrelaxationandinformation.Equally,telecarecanenhanceindependenceoutdoorsandfacilitatetravel.Noonewithasensoryimpairmentshouldbeforcedtoremainathomewhiletheywaitforsupportfromservices.Instead,throughtheeffectiveuseofappropriatetechnologytheirabilitytobeindependentshouldbemaximised.

Sometypesoftelecarethataresuitableforpeoplewithasensoryimpair-menthavebeenavailableforanumberofyears.However,inthepastcostswereoftenprohibitive.Inrecentyearsthetechnologyhasadvancedsignificantlyandbecomemuchmoreaffordableandaccessible.Thereisnowthepotentialforthistechnologytodramaticallyimprovequalityoflife.

Examples of telecare for people with sensory impairment

Mobility aids.AvarietyofdevicesareavailablewhichuseGPStechnology1 2 toprovidevisuallyimpaired(VI)userswithdirectionalinformation,along

withaudiocuesabouthazards.TheyareofparticularbenefittoworkingVIpeople,enablingindependenttraveltoandfromtheirplaceofwork.ManyrailwaystationsandsometowncentreshavesystemsinplacethatenableaVIpersontonavigatesafelyusinginformationthatistransmittedatstrategiclocations,suchasjunctions.

Computer hardware and software.Therearearangeofsoftwarepackages3 4 andhardwaredevices 5 availablewhichallowVIpeopletousecomput-

ersandaccesstheinternet.Someofthesearecompletelyvoiceactivatedandaredesignedforthosewithnousefulresidualvision.Otherscandramaticallyenlargethetextonthescreen,ormaycombinethetwoapproaches.

Telecare can play a major part in enabling people with sensory impairments of any kind to live at home safely and enjoy a good quality of life.

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BSL web clipsarealsonowavailableandarebecomingmoreprevalentonanumberofwebsites.Theseenabledeafsignlanguageuserstoaccessinforma-tioninBSL,theirfirstlanguage,ratherthanEnglish,whichmanyfinddifficulttounderstand.

Remote interpretingisalsonowmorewidelyavailable.Thereareonly56interpretersinScotlandregisteredwiththeScottishAssociationofSignLan-guageInterpreters.However,usingwebcamtechnologytoenableremoteinterpretinghasincreasedthenumberofappointmentseachonecanoffer.Traveltimeiseliminatedandthedeafpersoncanbenefitfromincreasedflex-ibilityandavailabilityofinterpretation.

Loops 6 aredevicesthatareusedtoenhancetheeffectivenessofhearingaidsforthosewhousethem,and/ortoassistpeoplewhochoosenottouseahearingaid.Therearewiredandwirelesstypes.Withwiredversions,acableisinstalledaroundtheroomandconnectedtoasmallamplifier.ThiscanbelinkedtoatelevisionviaaSCARTorphonosocket,orusedtopickupsoundsviaamicrophone.WhenahearingaiduserswitchestheirdevicetotheTpositiontheyareabletoheartheTVintheareawherethewireisplaced.Wiredloopsystems 7 arealsosuitableforlargebuildingslikehallsorchurches,makingiteasiertohearthepersonwhoisspeaking(andwhowearsthemicrophone).Aninfrared loopisconnectedtotheTVandbroadcastssoundfromitwirelessly.TheusercanthenlistentotheTVusingaspecialsetofheadphonesoraneckloop.Thissystemavoidstheneedtoinstallawirearoundtheroom.

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Apersonal listener 8 9 isahand-heldbattery-operateddevicethatusesamicrophonetopickupsoundandprovideamplification,eithertoheadphonesoraneckloop.Personallistenersenhancethevolumeandclarityofconversa-tionsandothersounds,andcanbeusedinmostsituationsincludingchattingwithfriends,watchingTVorlisteninginnoisyenvironments.

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Doorbells.Awidevarietyof(usuallycordless)doorbells 10 areavailablethatcombineloudvariablechimesandflashinglights.Thesemayflashupto20timestoalertapersonthatthereissomeoneatthedoor.Theyaregenerallyappropriateforthosewhoarehardofhearing.Profoundlydeafpeoplemayuseapagersystem(seebelow),orasystemwhichflashesallthelightsinthehouse.

Pager systemsenabledeafpeopletoremainindependentintheirownhomes.Pageralertscanbelinkedtodevicesincludingdoorbells,textphones,smokedetectorsandbabyalarms.Theuserwearsasmallvibratingpagerthatislinkedtoanumberoftransmitters 11 .Whenoneofthedevicesisactivated,ittrig-gersadifferentvibrationsignalonthepager,alertingthewearertoacallerordanger.Pagersystemsareappropriateforpeoplewhoareeitherhardofhearingorprofoundlydeaf.

Telephones.Amplifiedphones 12 arenowmoreaffordablethantheyhavebeeninthepast.Inadditiontotraditionalstylephones,textphones 12 13 14 ,whichenablecommunicationbytyping,areavailableandcanbebeneficialtobothdeafanddeafenedpeople.Ascreenphonehasrecentlybeendevelopedwhichcanbeusedbypeoplewhoaredeafenedandhenceunabletohearthephone,buthavespeech.Othervarietiesofphonesincludetraditionalphoneswithbigbuttons 15 ,bigbuttonmobiles,talkingphonesandautomaticdialdevices.Somephonecompanieswillsupplyanamplifiedbell16 freeofchargetocustomerswhoarehardofhearing.Othersmayqualifyforanamplifiedbellorphoneflash 17 suppliedbysocialservices.

Traditionalsmoke detectorsarenotsuitablefordeafordeafenedpeopleastheywillbeunabletohearthem.Theyareoflimitedusesomeonewhoishardofhearing,whomayonlyhearanalarmwhentheyarewearingtheirhearingaid(andhenceareunlikelytohearitatnight).Toovercomethis,smokedetectors18 areavailablethatincorporateflashinglights,combinedwithasecondaryunitthatvibratesandcanbeplacedunderthepillow.

Deafpeoplewhousepagersystemscanhaveababy alarm19 addedtotheirsystemiftheyhaveayoungchild,promptingavibrationalertwhenthealarmistriggered.Equally,hardofhearingpeoplegenerallystruggletouseconven-tionalbabyalarmsbecausetheseareprincipallynoiseactivated.Theymayneedaflashinglightoravibrationalertinstead.

Arangeofalarm clocks 20 21 22 isavailableforhardofhearing,Deafanddeafenedpeople.Deafanddeafenedpeopletendtorelyonvibrationstylealarmstowakethem,thoughsomepreferaflashinglight.Peoplewhoarehardofhearingwouldoftenratherhearanaudiblealarm,andloudermodelshavebeendevelopedtomeettheirneeds.Themaindisadvantageoftheseisthattheytendtowakeeveryoneelseinthehouse.Multifunctionalclocksthatcombinevibration,flashinglightsandanaudiblealarmarenowavailable.

Talking microwaves 23 canenableapersontocookforthemselves,ratherthanrelyingonhomecareservicestodeliverandpreparefood.Themicrowavewilltellthepersonwithavisualimpairmentthetimesetting,clocksetting,temperatureetc.

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Case study 1

Jim and Janet are a married couple in their 70s Jim is profoundly deaf and uses BSL to communicate Janet is profoundly deaf and blind due to Usher syndrome She communicates using a deafblind manual, hands on signing and BSL Previously, when Jim left the house, he would leave the front door unlocked so that expected visitors could let themselves in Th is was because Janet could not hear or see anyone at the door However, this also meant that strangers could enter and leave the house without Janet knowing, leaving her in an extremely vulnerable situation To counter this, a vibrating pager system was connected to the doorbell 25 , alerting Janet to callers when Jim was out Th e door could then be locked, preventing any unannounced callers Th e pager system means that Janet can be at home alone and remain independent It also means that her carer doesnt need to be with her 24 hours a day

Case study 2

Mr R is a 56-year-old man with no residual vision Due to a change in personal circumstances he is now living alone His former partner did most of the cooking, shopping and daily housework Mr R would like to maintain as much independence as possible, particularly with regards to cooking He would also like a way of keeping in touch with friends and family so that he can increase his social activity and minimise his isolation Following some training and the provision of talking kitchen scales 26 , talking tin labels and a talking microwave, Mr R is now able to cater for himself He now orders his shopping online using voice recognition software on his computer Th e computer also helps him keep in touch with friends, and using a magnifying mouse 27 he can read his own mail A support worker visits him once a week, but he doesnt need any home care and has been able to continue living independently

could not hear or see anyone at the door However, this also meant

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visits him once a week, but he doesnt need any home care and

27

Specialist medical devicessuchastalkingbloodpressuremonitors 24 canassistapersonwithasensoryimpairmenttomonitorandmanagehealthcareconditionsindependently.

Case studies

Thefollowingcasestudiesareintendedtohelpthereaderthinkaboutwaysinwhichtelecarecansupportsomeonewithasensoryimpairment.Thecasesillustrateanumberofsituationswheretechnologycansuccessfullysupportthepersonandtheircarer.

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Case study 3

Mr J is an 84-year-old man who lives alone He is completely blind and quite frail, so is unable to go out independently Mr J has a passion for music and has an extensive collection of CDs Having been provided with a PenFriend audio labeller 28 , he has been able to label all of his CDs Th e same labeller can be used to identify medication and food items 29 As a result, Mr J can choose music for himself, enhancing his enjoyment of his main pastime He is also able to manage his own medication and identify food in his cupboards

Case study 5

Mr L worked for the Secret Service during the war and was compiling his autobiography when his vision started to deteriorate due to macular degeneration He had always been very independent and struggled at having to rely on others for help with tasks like reading his mail Th e thought of not being able to fi nish his autobiography was devastating Th ings changed when Mr L was provided with a MonoMouse 31 , an electrical magnifi er that plugs into his TV and magnifi es whatever it is held over Th is means that Mr L can now read again He is delighted to be able to fi nish his researches and ultimately complete his autobiography He has regained much of his former independence, as the MonoMouse also means he can read personal documents such as bank statements and bills without having to ask others for help

As a result, Mr J can choose 2929

28

Case study 4

Mrs G is 28 and lives with her husband and baby daughter She has signifi cant sight loss, but using her residual vision she can dress, feed and bathe her daughter However, because of her inability to discern fi ne detail, she was unable to measure the amount of milk to be given to her daughter Th is meant that her partner, who worked full time, had to check that all the bottles were made up before he went to work With the help of talking kitchen scales 26 , Mrs G is now able to measure out the food for her baby, meaning that she can make up bottles independently Th is means she no longer has to rely on her husband or a home help for support Using a talking combination oven 30 and talking tins, Mrs G can also now cook family meals independently Th e technology has helped her to remain independent and maintained her self-esteem

Mrs G is 28 and lives with her husband and baby daughter

up before he went to work With the help of talking kitchen scales 26 , Mrs G is

30

Mr L worked for the Secret Service during the war and was

, an electrical magnifi er that plugs into his TV

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Case study 6

Mr S, who was already registered blind, needed to retrain due to a further reduction in his vision He wanted to go to university but needed support to take notes, prepare assignments and to get to and from university A combination of technologies enabled him to do all these things independently With the addition of speech synthesis software 3 4 to his computer (which can read text on the screen to him), he is now able to access course notes and carry out research online He uses a combined MP3 player and voice recorder 32 to record lectures and store text books A navigational system in the local railway station means he can also travel to and from university independently

Case study 8

Mr P has a dual sensory loss He has been visually impaired since birth and his hearing has subsequently deteriorated Because of his general health and dual sensory impairment, Mr P has been unable to work He has no light perception so is unable to watch TV or read print As a result he has limited access to resources He has always lived with his mother, who although elderly is still very supportive Having been provided with a DAISY player 34 and the RNIB talking book service, Mr P now has access to unlimited fi ction and non-fi ction books, which provide both entertainment and education He also receives local and national newspapers on CD Th ese enable him to keep up to date with what is happening in both his local and wider community

and the RNIB talking book service, Mr P now has access

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Case study 7

Mr H is an elderly man who lives alone in an upstairs fl at An internal staircase leads to the main door, which is on the ground fl oor Mr H is very frail and registered blind Th e door is recessed at the back of the building and no one directly overlooks the doorway When the doorbell rings, he struggles to get down the stairs to open the door, and is reluctant to make the journey if he doesnt know who is calling As a result he has been leaving the door open, which is placing him at risk Following an assessment, a door entry system (incorporating an intercom) 33 was installed with handsets beside his chair and in his bedroom He is now able to identify callers and let them in if he chooses, without having to go downstairs

internal staircase leads to the main door, which is on the ground fl oor Mr H is very frail and registered blind Th e door is recessed

was installed with handsets beside his chair and in his bedroom

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Mr S, who was already registered blind, needed to retrain due to a further reduction in his vision He wanted to go to university but needed support to take notes, prepare assignments and to get to and from university A combination of technologies enabled him to do all these things independently With the addition of speech

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Case study 9

Mr A lives with this wife who is hard of hearing He has long-standing breathing diffi culties and sometimes experiences problems during the night when he needs oxygen and inhalers administered Sometimes when he shouts for his wife, who sleeps in another room, she doesnt hear him and this has become a cause for concern Mrs As hearing is suffi ciently bad that she struggles to hear on the phone She cannot type, so a textphone is not an option Even if she could use the phone, she maintains that she would freeze during a crisis and wouldnt be any use if she had to make a call To solve the problem Mrs A has been issued with a pager system with alerts connected to the doorbell, a smoke detector and a baby alarm Th e baby alarm picks up Mr As shouting if he is in distress, causing the pager to vibrate and wake her, so that she can administer his medication Mr A has also been issued with a pendant 35 which he hangs on the bed head When pressed, this lets the mobile warden service know that he is having diffi culties and his wife hasnt heard him Alternatively, if his medication isnt working, Mr A and his wife can use the pendant to call the emergency services As a result of these interventions Mrs A can sleep easier at night and is able to remove her hearing aid She had previously been wearing this so she could listen for her husband, but it was uncomfortable and she still often didnt hear him Now if she needs to she can summon emergency help without having to talk over the phone

Case study 10

Mrs T is in her late 70s and has severe hearing loss She also has short-term memory problems and has lost her sense of smell She is very independent, and lives alone in a fi rst fl oor fl at, refusing home care and other services Her niece, who is her only close relative, doesnt live locally and works during the day In the morning Mrs T often forgets to put her hearing aids in, and even when she does remember her arthritis makes this task diffi cult As her niece isnt nearby and she doesnt want carers in her house, no one is available to help her Concerns were raised when Mrs Ts niece arrived at her home and heard the smoke detector from outside the house Mrs T was completely unaware of it Although Mrs T still felt able to continue caring for herself, she agreed that this incident meant she was at risk if a fi re broke out, and accepted a visit from an assessor Following her visit, a passive smoke detector, gas detector 36 and carbon monoxide detector 37 were fi tted in her home Th e devices are connected to a remote control centre which responds if any of the alarms are activated Th is means she can continue to live independently, confi dent that if a similar problem recurs there would be an appropriate response from the emergency services, day or night Her niece also feels more comfortable knowing that Mrs T has these safeguards in place

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36

during the day In the morning Mrs T often forgets to put

she was at risk if a fi re broke out, and accepted a visit from an assessor Following her visit, a passive smoke detector, gas detector 36 and carbon

37

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Case study 11

Mr M is 41 and lives alone He has no perception of light and previously could not tell if his lights were switched on or off Because of this he often left them on all day or overnight, increasing his electricity bill Having been issued with a light indicator, Mr M is now able to tell when the lights are on He is also able to orientate himself better around the house as he can use the indicator to determine the location of windows His electricity bill has also dropped

Issues to consider

Noteveryoneimmediatelywishestoembracenewtechnologyandthechangesthatitmaybring.Manyofthedevicesthatarerelevanttopeoplewithasen-soryimpairmentrelyontheindividualbeingdigitallyaware.Asaresultsomepeopleareputoffattheoutsetorfeelunabletousethetechnology.

Formanypeoplewithasensoryimpairmentlivinginisolation,thereisnosubstituteforhumaninteraction.Indeed,fordeafordeafblindpeopletouseatelecaredeviceeffectively,theyfirstneedinformationandinstructionstobetranslatedforthem,andthisstageoftheprocessnecessitatestrainingandpersonalcontact.Introducingtelecareinisolationwouldbeofnobenefit.Whenconsideringtelecare,aperson-centredapproachshouldbetakenwiththepersonencouragedandenabledtomakechoicestoshapeanddefinetheirowncarepackage.Thiswillensurethatitbestsuitstheirneedsandmaximisestheirindependence.

MembersoftheDeafcommunityseethemselvesasadistinctculturalminor-itygroupandbelievethatsomeadvancesintechnologythreatentheircultureanddiversity.Manyarenotsupportiveoftechnologylikecochlearimplants,whichenabledeafpeopletohearsoundsanddevelopspeech.

Ingeneral,electronicassistancedevicesfordeafpeoplecanbesplitintotwocategoriesthosesuchascochlearimplantswhichattempttonormalisedeafpeople,andthosewhichacknowledgethattheneedsofdeafpeoplearedifferent.Devicessuchastextphoneswouldfallintothesecondcategory.Itisimportanttobeawareofthesesensitivitieswhenassessingtheappropriate-nessoftelecareforsomeonewithasensoryimpairment.

Issues for carers and for care and support staff

Thebenefitsofelectronicassistivetechnologyarepotentiallysignificantforcar-erstoo.Simplesolutionscanprovideagreatsenseofrelieftofamilymembersandcarers.Withappropriatetechnologicalsupport,peoplecanremainsafebothintheirownhomesandoutdoors.Technologycanenablethemtoenjoyhigherlevelsofindependence,withtheresultthattheyneedlesstimeandsup-portfromcarers.Devicessuchaspagersandalarmsmeanthatindividualscancallonassistancemoreeasilyifrequired,andthisprovidesadegreeofsecurityforrelativesandcarers.Asaresult,relationshipsarelesslikelytobestrained.

However,therearestillanumberofhurdlestoovercomebeforetelecarecanbedeployedeffectively.Firstly,carersmaynotbeawareoftheavailabilityoftelecaretosupportthemintheircaringrole,orappreciateitspotential.Sec-ondly,itcannotbeassumedthatthecarerofapersonwithsensoryimpairment

For many people with a sensory impairment living in isolation, there is no substitute for human interaction.

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willbesupportiveoftheuseoftechnologyorthattheywillmonitoritsuse.Likewise,partnersandolderchildrenmayhaveconcernsaboutadaptationstolaptops,mobilephonesanddomesticequipmentperhapsbecauseofincon-venience,anxietyaboutchange,reliabilityorstigma.Olderparentsinparticularmayhavehaddifferentexperiencesofcaring,oftenfightingforservicesatatimewhentheysimplydidnotexist.Asaresult,theyareoftenmorereluctanttoseekhelporsupport32,andthiscanbereflectedinareluctancetoworktowardsmoreindependentlivingfortheirsonordaughter.Theseviewsmustbetakenintoaccountbeforebringingnewtechnologyintothefamilyhome.

Goodplanningatanearlystagecanavoidtheneedforcrisisdecisionsbeingmadeastheparentages.Tobeeffective,telecareneedstobepartofalong-termcarepackagethatisregularlyreviewedandincorporatestheneedsofthepersonwithasensoryimpairment,alongwiththoseoftheirparentorcarer.Forconsistency,respitecarersandthoseofferingshortbreaksneedtobeawareofanyuseoftechnologybytheperson.Implementingtelecareeffectivelyislikelytorequireclearexplanationsforcarers,aswellasforthepersonwithasensoryimpairment.

Carersandcarestaffalsoneedappropriatetrainingandsupportintheuseoftelecare.Althoughuseofmobilephonesandtheinternetiswidespread,itshouldnotautomaticallybeassumedthatstafforfamilymemberswillbefamiliarwiththem.Staffmayhavenodesiretousethesetechnologiesthem-selves,somayhavedifficultyincorporatingthemintotheirdailywork.Whatmaybeseenasareluctancetosupportapersonwithasensoryimpairmentmayinrealitybeduetofeelingsofuncertaintyaboutthetechnologywhichneedtobeacknowledged.Theseissuescanbeovercomebysupportandtrain-ing.Insomecasesthecarerorstaff-membermaylearnalongsidethepersonwithasensoryimpairment,whichcanprovebeneficialforboth.Trainingandsupportforstaffareessential,andshouldformpartofpersonaldevelopmentplanswhichwillensurethatthisareaofworkisrecognisedandacknowledged.Additionally,clearlinesofaccountabilityandreportingareneeded.Ifneces-sary,jobdescriptionsandpersonspecificationsshouldbeexpandedforbothexistingandnewstafftoreflecttheirexpandedrole.

Itisimportantthatmorethanonestafforfamilymemberisfamiliarwithanytechnologythatisintroduced.Therewillnormallyneedtobesomeoneonshiftatalltimeswhoisfamiliarwithhoweachpieceofequipmentworks.Equally,callcentrestaffneedtobeawarethatthepersontheyarerespondingtohasasensoryimpairmentandunderstandthenecessarycommunicationandresponsearrangements.Theseshouldbeintheindividualresponseprotocolthatisestablishedatthetimeofinstallation.Discussingthisplanregularlyatteammeetingswillmeanthatstaffarefamiliarwiththeissuestheymayencounter,ratherthanbecomingstressedwhentheyfaceaproblemorreceiveacall.Thisisespeciallyimportantinorganisationswherethereisahighstaffturnoverorregularuseofagencystaff.

Whentelecareisfirstintroduced,paidstaffmayhaveconcernsabouttheirjobsecurityandbefearfulofbeingreplacedbytechnology.Althoughtheintroductionoftelecaremayopenuppossibilitiesfornewordifferentroles,thisneednotbeattheexpenseofcontacttimeandsocialinteractionwithpeoplewhohaveasensoryimpairmentespeciallythoselivingalone,forwhomlonelinesscanbeaveryrealissue.Instead,routinesupervisionorcheckvisitscanbereplacedbyequipment,freeingupstafftimeformoreworthwhilesocialinteraction.

Carers and care staff also need appropriate training and support in the use of telecare.

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5: Training programme

Thissectioncontainscontentandasuggestedtimetableforaone-daytrain-ingprogrammeonhowtelecarecancontributetothecareandsupportofpeoplewithasensoryimpairment.Itmayalsoprovideabasisforalongerprogrammeforspecialistassessorsortelecarechampionsifcombinedwithshadowingexperiencesandvisitstoacontrolcentre,responseteam,andcontactwithserviceusersalreadyexperiencedintelecare.Similarly,itmaybeofvaluetocourseleadersofqualifyingprogrammesforsocialworkers,occu-pationaltherapistsandcommunitynurses.

Itisanoutlineprogrammewhichskilledtrainerswillneedtoadapttotheparticulartrainingneedsandcircumstancesoflocalgroups.

HandoutsAtoDprovideimportantadditionalinformationaboutsensoryimpairment.Thesecanbeusedasadvancereadingforparticipants,orusefulinformationtotakeaway.Alternatively,theinformationinthesehandoutscanbeusedaspartofadiscussionorquizatthestartofthesession.

Aim

Tosupportparticipantsinthedevelopmentoftheirknowledge,skillsandunderstandingrequiredtointroducetelecareintoindividualisedcarepackages.

Objectives

tolearnhowtelecarecancontributetothesupportofpeoplewithsensoryimpairmentsandtheircarers

todeveloppracticeinneedsandriskassessment,andcareplanning,soastomaximisethebenefitsoftelecare

toincreaseknowledgeofthelegalandethicalframeworkforgoodpractice

tounderstandthewiderpolicyandstrategiccontextfortelecare

Timetable

9.00 Welcome and introductions

domesticarrangements discussagendaandclarifyexpectationsofthecourse.Refer

totheaimsandobjectivestoconfirmwhatthecoursecanandcannotprovide.Inviteparticipantstodiscuss,briefly,witheachother,theircurrentknowledgeandunderstandingoftelecare,theirperceptionsandanxietiesabouttechnology,theirexpectationsoftheday,andtheirindividualtrainingneeds

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9.30 Definitions of telecare and telehealth

Thiscouldbeateachingsessionwithapresentationandhandoutbasedonthedefinitionsprovidedintheintroductiontothisbook.Keylearningpointsare:

themeaningoftermssuchastelecare,telehealth,telehealthcareandanintroductiontothegenerationsoftelecare

thelackofcommonlyacceptedstandarddefinitions,andtheextenttowhichtermsareinterchangeable,andchanging

thespeedwithwhichtechnologyisdevelopinginallareasofourlives theeffectofthisonserviceuserandcarerexpectations

Inthissessionitwillalsobeimportanttoremindparticipantsaboutthenatureandimpactofdifferentsortsofimpairment,andsobegintoexplorethewaysinwhichtechnologycansupportpeoplewithdifferentconditions.Assumingthatparticipantswillalreadybeworkinginthefieldofsensoryimpairment,thekeylearningpointswillinclude:

understandingthatthesuccessfulintroductionoftelecaredependsonunderstandingthedifferentformsofimpairment(seehandoutsCandD)

beingabletodevelopanduseappropriatecommunicationsskills(seehandoutsAandB)

takingaperson-centredapproachtocareandsupportandencouraginghigherexpectationsamongthefamilyandcarersofpeoplewithsensoryimpairments.Thisincludesdevelopingaproactiveapproachwhichengagesthepersoninmeaningfulandenjoyableactivities

beingopentonewandchangingwaysofprovidingsupport

Gathertogetheranythoughtsandinitialreactionsatthisstage.Someofthedefinitionsmaybenewtoparticipants,andtimeisavailabletoaskquestionsaboutthesethroughouttheday.Reassureparticipantsthattheywillhavetheopportunitytoapplythesetopracticelater.

10.15 How can telecare help support people with sensory impairment?

Thisshouldbeanopportunityforparticipantstoseepicturesof,and,ifpossible,actuallytouchandfeelequipment.Itisimportanttoexplainthekindofsup-portneedsforwhichpiecesofequipmentmaybeuseful,andtotalkthroughexamplesofequipmentwhichmaybeindevelopmentbutnotyetavailable.

Localprovidersandsuppliersmayoffertoputonadisplayofequipment,atnocharge.Ifthereisalocalsmarthouseitmaybepossibletoholdthetrainingsessionthereortoorganiseavisitattheendofthedayorduringthelunchbreak.

Askthegrouptolookattheillustrationsofequipmentandsharetheirideasabouteachitemsusesandlimitations.Participantsmayhaveadditionalvalidsuggestionsaboutusesandlimitationsbasedontheirownexperiences.Askthegrouptosplitintopairsandthinkaboutapersontheyknowwhomaybenefitfromsomeoftheseadaptationsorinterventions,alongwithsomeonewhowouldbeunlikelytobenefitfromthem.

10.45 Break

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11.00 Case studies telecare in practice

Inthissession,participantswilllookatavarietyofdifferentscenariosinpairsandthinkaboutwhatequipmentwouldbeuseful.Itisalsoimportantthattheythinkthroughtheimplicationsforexample:

whatistheneedthatistobemet(theimportanceofcarefulassessment;avoidingsimplisticsolutions;notjustgivingoutbitsofkit)

thedifferentperspectivesoftheserviceuser,theirfamilyandsupportstaff differingattitudestorisk howtelecarecansupplementotherkindsofsupport

butisnotintendedtoreplacethem theimportanceofmaximisinglevelsof

independenceandretainingpersonalskills encouraging/enablingindividualstoremainintheirown

homes/communitiesforaslongasissafelypossible fosteringafeelingofsecurityforindividualsandtheirfamilies improvingqualityoflife providinggreaterchoice

Ideally,participantswillsharetheirownexperienceandcaseswithcolleagues.Thisbookalsocontainssomecasestudieswhichcanbeusedasanalterna-tive,orinconjunctionwithparticipantsownexperience.Thetrainerwillneedtodecidehowbesttousesomeoralloftheseperhapsgivingtheinitialscenariofirst,thencomparingthesolutionsuggestedinthebookwiththegroup-membersownideas.

12.00 The importance of good assessment

Bringparticipantsbacktogetherasasinglegroupandcomparetheideasthatemergedintheprevioussession.Encouragedebateabouthowtelecarecontrib-utedtothesupportoftheindividualsinthecasestudiesinthefollowingways:

drawouttheimportanceofgoodassessment.Refertothesectiononassessmentinthisbook.Ifnecessary,developahandoutoruseanexampleofalocalassessmenttool

makesureriskisconsidered,andwellasneed highlightthedifferingconcernsandbenefits

asseenfromdifferentpointsofview bringanydifficultissuesintotheopen,suchasstaff

reluctanceorhowcarerconcernsshouldbeaddressed highlightwhattheproblemisandwhothetelecare

isintendedfor.Arethereconsentissues,ordifferingperspectivesonrisk,need,capacityorconsent?

13.00 Lunch

14.00 Telecare may be the solution but is it right???

Thisisanopportunitytodiscusswithparticipantstherightsandwrongsofusingtelecare,lookedatfromtheirownperspective,aswellastheiremployersand

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professionalperspectives.Chapters2(Assessment)and3(Principles,rightsandethics)mayprovidethebasisforashortintroductorytalk.Alternatively,thiscouldbeaninteractivesessioninwhichthefollowingkindsofquestionsareposed:

telecarecaninvolvethemonitoringofpeoplesprivatelives.Isthatright? someequipmentrestrictspeoplesfreedomtodoastheywantor

gowheretheywantinordertoprotectthem.Whatistherightbalancebetweenriskandprotectionandhowdoweachieveit?

telecarecanbeusedtosupportanormallifestylegettingupinthemorning,goingoutduringthedayandgoingtobedatnight.Istelecarebeingusedtoimposeaconventionallifestyle?

Stressthatpeoplewithasensoryimpairmentshouldonlyhavetheirmove-mentrestrictedormonitoredwithpermission,andwherethiscomplieswiththelawandcareregulations.Discusswhatpermissionmeanswherethereissignificantcognitiveimpairmentandtalkthroughwhatthelawdictatesinthisarea.Theseissuescanbediscussedinthecontextofthecasestudiesfromtheprevioussession.

Participantsneedtobeclearaboutthelegalconstraintsonthis(andanyother)partoftheirsupportservice.Theyhavearesponsibilitytomakedecisionsthatarebothethicallydefensibleandlegal.Anapproachbasedonindividualassessedneedswillalwayspresentethicaldilemmaswhichneedtoberesolved.

15.00 Policies, procedures, and strategy to support the use of telecare.

Thissessionprovidesanopportunityforparticipantstoexploreandgainabet-terunderstandingoflocalpolicyandprocedures.Itshouldincludediscussionoflocalassessmenttoolstoensurethatparticipantsunderstandwhenandhowtelecarecanbeintroducedintotheassessmentprocess.Localproceduresforaccessingtelecare,aswellasforinstallation,testingandrespondingtocall-outs,shouldbediscussedandexplained,alongwithchargingpoliciesandbudgets.

Itmayalsobeusefultodiscusslocalstrategy.Howdoestheuseoftelecarefitwithlocaljointstrategiesforpeoplewithsensoryimpairment?Iftimeisavailable,itwillbeusefultolookatthenationalstrategytooanddiscusshowtelecarecancontributetonationalpolicygoalssuchasShiftingtheBalanceofCare.(ResourcesareavailableontheNationalTelecareDevelopmentPro-grammewebsitewww.jitscotland.org.uk/action-areas/telecare-in-scotland/)

16.15 Conclusions and evaluation

Askthegroupifthediscussionstheyhavehadduringtheafternoonhaveinfluencedthewaytheywouldnowapproachthecasestudiesintroducedearlierintheday.Dotheynowfeelmoreconfidentaboutmakingarecom-mendationandsupportingapersonwithasensoryimpairmenttomakeaninformedchoiceabouttelecare?

Summariseandaskwhattheparticipantswilltakeawayfromtheday.Thediscussioncouldincludeareasofnewtechnologyandthepotentialforthefutureuseoftelecareandtelehealthasawayofsupportingpeoplewithasensoryimpairment.

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Handout A: Communication and guiding someone with a visual impairmentPeoplesvisualimpairmentsvaryfrompartialsighttototalvisionloss.Thismeansthatsomepeoplecanseeconsiderablymorethanothers.Checkwiththepersonhowmuchtheycanseeandwhathelptheyneed.

usethepersonsnametoletthemknowyouaretalkingtothem useyournamesotheyknowwhoyouare.Ifnecessary,letthemknowifanyoneelse

ispresent.Ifyouaremeetingtheminaprofessionalcapacity,beclearaboutwhoyouworkforyoumaynotbeimmediatelyrecognisableas,forinstance,anurse,becausethepersonmaynotbeabletoseeyouruniformornamebadge

explainwhatyouaredoingorhavecometodo.ThiscanbeassimpleassayingImcrossingtheroom,or(perhapsinhospital)Imjustputtingyourmealtrayinfrontofyou.Makesureyouexplainprocedures.Ifyouareahomehelp,letyourclientsknowwhatyouaredoingandremembertoputthingsbackwheretheywere.Forinstance,sayImjustunpluggingthelampsoIcanpluginthevacuumcleaner,butremembertoplugthelampbackinafterwards

askthemwheretheywouldlikeyoutositinrelationtothemforinstancetotheirleftorright,orfacingthem.Takethelocationofwindowsintoaccount.Thepersonmaywantyoutotakeawell-litseatsothattheycanseeyourfacialexpressionsandbodylanguageaswellaspossible

usetouchappropriately.Forinstance,lightlytouchingtheirforearmiftheyneedorientationtoyourphysicalwhereabouts

sometimespeopleworryaboutthelanguagetheyuseandareconcernedaboutbeingpatronising.TheymaybeunsureaboutusingexplanatoryphrasessuchasSeewhatImean?orLetshavealookatthis.Inpractice,thisusuallydoesntcauseanyoffenceaspeopleunderstandthesearecommonturnsofphrase

alwaysletthepersonknowyouareleavingtheroom,evenforashorttime.Itisveryembarrassingforthemtofindtheyaretalkingtothemselvesbecausetheyareunawaretheyareontheirown.Itisalsoimportanttoletthemknowwhetherdoorsareclosedorhavebeenleftopen

beawarethatavisuallyimpairedpersonmaynotbeabletoseeyourfacialexpressionsorbodylanguage,andasaresultmaymisreadwhatyouaretryingtocommunicate.Trytobespecificanddescriptiveinyourresponses

whenwrittencommunicationisappropriate,findoutwhatformatthepersonrequirestoenablethemtoaccesstheirmail.Optionsincludelargeprint,audio,BrailleorMoon

assistancethatisofferedunsolicitedmayberefused.Ifsomeoneasksyouforhelp,itisveryimportanttolistentowhattheyactuallywanthelpwith.Someonewithawhitecanewhoisstandingatajunctiondoesntalwayswanttocrosstheroad

neverleaveablindpersoninanunfamiliarplacewithoutgivingthemalandmarktoorientatethemselvesby.Theymayfeelmoresecurebyawallorabench

guideavisuallyimpairedpersonbyaskingthemtotakeyourarm.Communicateclearlywiththepersonaboutwhereyouareandwhennegotiatingobstaclessuchaskerbs,trafficandsteps

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Handout B: Causes of deafness

Hearinglosscanbesensorineural,conductiveoramixtureofthetwo.Conductive hearing loss causesalossofvolume.Itoccurswhentheouterand/ormiddleearfailtoworkproperly.Soundsarenotcar-riedallthewaytotheinnerear.Potentialcausesofaconductivelossinclude:

abuild-upoffluidinthemiddleear waxintheearcanal damagetotheeardrumasaresultofinfectionorinjury problemswithorinjurytothebonesormembraneswhichcarrysound

fromtheouterearthroughthemiddleeartotheinnerear

Sensorineural hearing loss,alsoknownasnervedeafness,causesdistortionofsounds.Itoccurswhentheinnerearorhearingnerveisdamaged.About90percentofpeoplewhohaveahearinglosshaveasensorineuralhearingloss.Potentialcausesinclude:

thenaturalageingprocess exposuretoloudnoiseindustrialormusic,forexample infections congenitaldeafnessorgeneticfactors

Whilehearingaidsmayreducetheeffectofahearingloss,nohearingaidcanrestorenormalhearing.Theeffectivenessofaparticularhearingaiddependsonthedegreeofhearingloss.

Handout C: Clear communication principles

domakesureyouhavethepersonsattentionbeforeyoustarttalking dofacethepersonandmaintaineyecontact ifpossible,introducethetopicofconversationtohelpavoidguesswork dospeakclearlyandslightlymoreslowlythanusual,butretainyournaturalrhythm

andintonation(forinstance,sayresponsibilityratherthanres-pon-sib-il-it-y) dopositionyourselfthreetosixfeetfromtheperson,andat

thesamelevelasthem,iebothstandingorsitting domoveawayfrombackgroundnoiseorswitchoffTVsorradios whencommunicatingwithadeafperson,ensuretheyhavethe

lightbehindthemandthatyourfaceisingoodlight ingeneral,usegestureandfacialexpression,althoughbearinmind

thatnoteveryonelikesthisstyleofcommunication dorepeatorrephrasethingsifnecessary.Ifthistacticisunsuccessful,writethingsdown

dontshoutthisdistortsthefaceandvoice dontoverexaggerateyourlipmovements dontslowyourspeechtoomuchthiscreatesextrasyllables

whichareconfusingwhenlip-reading dontobscureyourfacewithyourhands,smokeoreatwhilstspeaking dontlookawayspeechmovementsareveryquickandcaneasilybemissed dontgiveupandsayItdoesntmatter.Useapencilandpaperifnecessary

35

Handout D: The 20 losses of blindness

I.Basiclossestopsychologicalsecurity

Lossofphysicalintegrity Lossofconfidenceintheremainingsenses Lossofrealitycontactwithenvironment Lossofvisualbackground Lossoflightsecurity

II.Lossesinbasicskills

Lossofmobility Lossoftechniquesofdailyliving

III.Lossesincommunication

Lossofeaseofwrittencommunication Lossofeaseofspokencommunication Lossofinformationalprogress

IV.Lossofappreciation

Lossofthevisualperceptionofthepleasurable Lossofthevisualperceptionofthebeautiful

V.Lossesconcerningoccupationandfinancialstatus

Lossofrecreation Lossofcareer,vocationalgoalorjobopportunity Lossoffinancialsecurity

VI.Resultinglossestothewholepersonality

Lossofpersonalindependence Lossofsocialadequacy Lossofobscurity Lossofself-esteem Lossoftotalpersonalityorganisation

Carrol,ThomasJ,Blindness, What it is, what it does and how to live with it,Little,Brown&Co.,1961

36

Additional resources*

ForfurtherinformationabouttelecareandtheNationalDevelopmentProgrammeinScotland,pleasecontacttheJointImprovementTeamviatheirwebsite:http://www.jitscotland.org.uk/action-areas/telecare-in-scotland/

ThewebsitefortheequivalentprogrammeinEnglandis:http://www.dhcarenetworks.org.uk/independentlivingchoices/telecare/

Other websites

InformationandgeneraladvicefromtheDisabledLivingFoundation:http://www.livingmadeeasy.org.uk/telecare-167/

Consumerreportsontelecareequipment:http://www.ricability.org.uk/consumer_reports/at_home/

HomeFarmTrustisanationalcharitysupportingpeoplewithlearningdisabilitiesandtheirfamilies.Formoreinformationaboutwhattheycallpersonalisedtechnologyemailpersonalisedtechnology@hft.org.ukorvisithttp://www.hft.org.uk/What_we_do/Assistive_technology

TheATDementiawebsitebringstogetherinformationaboutassistivetechnologythathasthepotentialtosupporttheindependenceandleisureopportunitiesofpeoplewithdementia:http://www.atdementia.org.uk/

Informationonassistivetechnologyforpeoplewithdementia:http://www.atdementia.org.uk

TelecareServicesAssociation(TSA):http://www.telecare.org.uk

SocialCareInstituteforExcellenceDementiaGateway.Thissectionofthewebsitelooksattheuseoftechnology:http://www.scie.org.uk/publications/dementia/environment/assistive.asp

CentreforUsableHomeTechnology:http://www.cuhtec.org.uk/

CentreforAccessibleEnvironments:http://www.cae.org.uk/

Enable:http://www.enableproject.org/

DementiaServicesDevelopmentCentre:http://www.dementia.stir.ac.uk

DVDs

TelecaresupportingScotland:adifferentapproach.DVDwhichincludessevendigitalstoriesillustrating,inthewordsofusersandcarers,theimpactoftelecare.Availablethroughhttp://www.jitscotland.org.uk/action-areas/telecare-in-scotland/

TelehealthinAction.ScottishCentreforTelehealth:http://www.sct.scot.nhs.uk

37

Publications

Advance(January2006)Gadgets, gizmos and gaining independence assistive technology and people with learning disability,availableat:http://www.jitscotland.org.uk/knowledge-bank/publications/

Aspinall,Ann(2007)Assistivetechnologyandtelecaretosupportadultswithlearningdisabilities:keyfindingsfromtheTATEProject,Journal of assistive technology1(1)5357

Aspinall,Ann(2007)Howcanassistivetechnologyandtelecaresupporttheindependenceandemploymentprospectsforadultswithlearningdisabilities,Journal of assistive technology1(2)4348

AuditCommission(2010)Under pressure: tackling the financial challenge for councils of an ageing population,AuditCommission:London

Bowes,Alison(2009)Implementingtelecareforpeoplewithdementia:supportingaginginplaceinWestLothian,Scotland,Journal of care services management3(3)227243.ThispaperreviewsthepositiveevaluationofWestLothianstelecareprogrammeinrelationtoprovisionoftelecareathomeforpeoplewithdementia.

Doughty,Kevin(2008)Lifestylemonitoring:extendingtelecareservicesintopredictionandprevention,Journal of assistive technology2(1)3541

Doughty,Kevin(2008)Accessingpropertiesforthedeliveryoftelecareservicesinanemergency,Journal of assistive technology2(2)4347

Jarrold,Kara&YeandleSue(2009)A weight off my mind exploring the impact and potential benefits of telecare for unpaid carers in Scotland,CarersScotland

Mackenzie,Moira(2008)Tartan-isedtelecare?Theroll-outoftelecareservicesinScotland,Journal of assistive technology2(1)4244

MentalWelfareCommissionforScotland(July2007)Safe to wander principles and guidance on good practice when considering the use of wandering technologies for people with dementia and related disorders

ScottishGovernment(2008)Seizing the opportunity: telecare strategy 20082010, ScottishGovernment:Edinburgh

Support for carers: a guide to telecare. A guide for carers covering various telecare solutions and how they can be of use(2008)CarersUK:http://www.carersuk.org/Information/Makinglifeeasier/Telecare/main_content/TunstallSupportforCarersGuide.pdf

Williams,Gareth(2007)Towardsanevaluationframeworkfortelecareservices,Journal of assistive technology1(1)4247

Woolham,John(2006)Safeathome:theeffectivenessofassistivetechnologyinsupportingtheindependenceofpeoplewithdementia:theSafeatHomeProject,Hawker:London

*Allwebsitesaccessed24.02.10

38

Supplier contact details

Theimagesofequipmentfeaturedinthisbookrepresentasmallsubsectionoftherangecurrentlyavailable.Thecontactdetailsbelowhavebeenincludedtoassistpurchasersinassessingwhatisavailablefromwhom,butinmanycasesthesamedeviceisavailablefrommorethanonesupplier.Thepublishersinnowayendorseanyparticularsupplierorproduct.Thelackofinclusionofaparticularproductdoesnotimplythatitisinferiortoanydevicefeatured.Purchasersareresponsibleforresearchingthefullrangeofproductsavailableandreachingtheirownconclusionsaboutwhatismostsuitableforthemortheirclients.

A&DInstrumentsLtd 24AvailablefromtheRNIB(seecontactdetailsbelow)

Bierley.comLtd 5 27 31CrossingCottageWyfordbyLE144RYTel:08000430282www.bierley.com

BTplc 1581NewgateStreetLondonEC1A7AJTel:0800800150www.bt.com/inclusion

CHByronElectricalLtd 10 2534SherwoodRoadBromsgroveB603DRTel:01527557700www.chbyron.com

CoboltSystemsLtd 23 30TheOldMillHouseMillRoadNorwichNR133TLTel:01493700172www.cobolt.co.uk

DolphinComputerAccessLtd 4TechnologyHouseBlackpoleEstateWestWorcesterWR38TJTel:01905754577www.yourdolphin.com

FreedomScientific 31180031stCourtNorthStPetersburgFL33716-1805USATel:0017278038000www.freedomscientific.com

13 14 17 18 21GeemarcTelecomSA5SwallowCourtSwallowfieldsWelwynGardenCityAL71SBTel:01707372372www.geemarc.com

HearingProductsInternationalLimited 6 7 8 9 20EchoHouse2627HaighParkStockportSK41QRTel:01614808003www.hear4you.com

HumanWareEurope 1 2 32RussellSmithHouse2BullmattBusinessCentreNorthamptonRoadRushdenNN106ARTel:01933415800www.humanware.com

RNIB 28 29 34POBox173PeterboroughPE26WS03031239999www.rnib.org.uk

RNIDProduct