Telecare and learning disabilityUsing telecare effectively in the support of people with learning disabilities

Telecare and learning disabilityUsing telecare effectively in the support of people with learning disabilities

Editorial team

Brian Kerr NationalTelecareDevelopmentProgramme

Colm Cunningham DirectorofOperations,DementiaServicesDevelopmentCentre

Dr Suzanne Martin Lecturer,OccupationalTherapy,UniversityofUlster

Karen Watchman CentreforResearchonFamiliesandRelationships,UniversityofEdinburgh

Acknowledgements

TheeditorswouldliketothankKarenWatchman,CentreforResearchonFami-liesandRelationships,UniversityofEdinburgh,fordevelopingthecontentofchapters4and5.Additionalcontentwaswrittenbytheeditorialteam.ThanksarealsoduetoFionaTaylor(NorthLanarkshireCouncil)forherworkwiththeDementiaServicesDevelopmentCentreinproducingUsing electronic assis-tive technology to support people with dementia1,whichprovidedthemodelforthisseries.Maincoverphotographandmainphotographonpage21bywww.tonymarshphotography.com.

©DSDC/JIT2010

DementiaServicesDevelopmentCentreIrisMurdochBuildingUniversityofStirlingStirlingFK94LA

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

JointImprovementTeamArea3ER,StAndrew’sHouseRegentRoadEdinburghEH13DG

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

ISBN9781857692402

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 learning disability � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 17

Definitions: whom are we talking about? � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 17Communication � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 18Specific learning disabilities and their implications for telecare � � � � � � � � � � � � � � � � � 18Examples of telecare for people with a learning disability � � � � � � � � � � � � � � � � � � � � � � � 19Case studies � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 22Benefits of using telecare � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 24Issues for carers and for care and support staff � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 25Potential barriers and how to overcome them � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 26Introducing telecare – a four-stage procedure � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 27An example of introducing telecare in practice � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 30

5: Training programme � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 32Aim � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 32Objectives � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 32Timetable � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 32

Additional resources � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 37Supplier contact details � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 39References � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 40

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Preface

Thisbookexploreshowtelecarecancontributetothesupport,protection,andqualityoflifeofpeoplewithalearningdisability.Italsoconsidersthe

importanceoftelecareinprovidingsupportandreassurancetocarers.ThisisoneofanumberofpublicationsfundedbytheScottishGovernment’s

NationalTelecareDevelopmentProgramme2,inpursuitofthestrategicgoalofraisingawarenessoftheimportanceoftelecareincontemporaryhealthandsocialcareservices.Theotherbooksinthisseriesare:

◾ Telecareanddementia–usingtelecareeffectivelyinthesupportofpeoplewithdementia

◾ Telecareandphysicaldisability−usingtelecareeffectivelyinthesupportofpeoplewithseverephysicaldisabilitiesandlong-termchronicconditions

◾ Telecareandsensoryimpairment–usingtelecareeffectivelyinthesupportofpeoplewithsensoryimpairments

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

Eachbookalsocontainscasestudiesandatrainingprogrammedesignedtohelptrainerswhendesigningbothawareness-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,DVDplayersandflat

screenTVsenhancethequalityofourlivesandreducetheamountoftimewespendonthedrudgeryofhousework.Werelyoncomputersandmobilephonesforinformation,socialcontactandentertainment,andtohelpusmakeinformedchoicesaboutpurchasesandservices.Awayfromhome,technologysuchasGPS(globalpositioningsystems)andsatnav(satellitenavigation)–oftenincorporatedintoourmobilephones–hasthepotentialtoguideus,keepusintouch,andkeepussafe.

Peoplewhoaremorevulnerableanddependentbecauseofalearningdisabilityoughttohavethesameaccessto,andbenefitsfrom,thisincreas-inglycheapandaccessibletechnology.Aswegrowolderandtakeoncaringresponsibilitiesorbecomedisabled,technologycanhelpusmaintainourindependenceandqualityoflife.Itcanalsoovercomesomeofthelimitationsofspecificconditions.Onepurposeofthisbookistoraiseawarenessoftheseissuesandprovidepracticalguidanceonhowtointroducetechnologytopotentialserviceusers.

Demographicchange,andthekeysocialpolicyagendaofshiftingthebalanceofcarefrominstitutionstocareathomeinthecommunity3,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.Itformspartofthe‘sharedvocabulary’5agreedandpublishedbytheScottishGovernment,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,basedon‘generations’,providesawayofdistinguishingbetweendifferentstagesofdevelopmentandapplication.

First generation telecarereferstoequipmentthatformspartofmostcom-munityalarmservices.Itisusedtodescribeuser-activatedalarmcalls(bypushbutton,pendantorpullcord)toacontrolcentrewhereacallhandlercanorganisearesponseofsomekind.Thisisusuallyviaaneighbour,relativeorfriendactingasa‘key-holder’.

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

Third generation telecaredevelopedfromimprovedandincreasedavailabilityofbroadband,wirelessandaudio-visualtechnology.Itoffersthepotentialforvirtualortele-consultationsbetweentheserviceuserandtheirdoctor,nurseorsupportworker,thusreducingtheneedforhomevisitsorhospitalappoint-ments.Furthermore,itprovidesincreasedopportunitiesforpeople(particularlythoseunabletoleavetheirhomesalone)to‘visit’libraries,shopsandmaintaincontactwithfamilyandfriends.6

Telehealth

Inthisbookthetermtelehealthreferstotheuseofmonitoringandmeasuringdevicestocollectinformationaboutvitalsigns(suchastemperature,bloodpressureandbloodsugarlevel),symptomsorhealthconditionsinthepatient’s

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.Clinicianscanbealertedtosignificantchangesinapatient’scondition,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 person’s home� Telehealthcare offers a range of care options remotely via phones, mobiles, broadband and videoconferencing� It can improve the patient’s 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.Theterm‘telecareserv-ices’setsthedeliveryofequipmentinthewidercontextofhealthandsocialcareservices.Inapracticalsense,thismeansefficient,up-to-datemonitor-ingorcallcentreswithtrainedstaffwhohaveaccesstopersonalhealthandsocialcaredataandresponseprotocols.Thesestaffwillbeavailableeverydayoftheyear,andwillbeskilledinmakingjudgementsabouttheinformationandalertssentbytheequipment,andinfacilitatingthemostappropriateresponsepossible.Suchcentresareabsolutelyessentialtotheeffectiveuseofmosttelecareequipment.Whiledifferentagenciesmayorganisetheircallhandlingormonitoringstaffindifferentways,thepresenceofsomeonewhocaninterprettheinformation,providereassurance,followdetailedindividualprotocols,andunderstandthebasicsofhowequipmentworksisessentialtoensuringthemaximumbenefittotheserviceuser.

Appropriateresponsearrangementsmustalsobeinplace,incorporatingindividualisedresponseprotocolswhichensurethebestpossibleresponsetotheimmediateneedorsituation.Traditionallythishasreliedon‘key-holders’–relativesorneighbourswho,whencontactedbythecallcentre,wouldcallontheserviceuserandsolvetheproblemorcontactservicesasnecessary.Increasingly,inresponsetohigherlevelsofdependenceandmorecomplexneeds,agenciesaredeployingteamsoftrainedcarers,whocanrespondtoanemergencyandprovidepersonalcare,reassurance,orcontactotheremergencyservicesasnecessary.

Inorderfortelecareservicestohavemaximumimpactonwiderpolicygoalssuchaschangingthebalanceofcare,theyneedtobeconceivedaspartof,andlocatedwithin,localhealthandsocialcarestrategiesfordifferentclientandpatientgroups.Serviceplannersneedtoarticulatehowtelecaredevelopmentswillenhancehomecareandhousingsupportservicesnotasan‘add-on’,butasanintegralpartofhealthandsocialcareserviceoptions.

Risk and reliability

Noequipmentcanbe100percentreliableforever,inthesamewaythatno‘human’serviceiscompletelyandconsistentlyreliable.Equipmentwillcomewithamanufacturer’sguarantee,butintheeventofafaultanengineerwillneedtobecalledout,andtheremaythereforebegapsinserviceprovision,evenwhenmonitoringisrequired‘24/7’.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).

‘Interoperability’isasignificantissue.Thisreferstotheproblemsthatarisewhenequipmentdevelopedbyonemanufacturerdoesnotworkwiththecallhandlingormonitoringsystemwhichisalreadyinplace,andwhichwasmadebyanothercompany.Progresshasbeenmadeinresolvingthisissue,partlyduetotheintroductionofanew(voluntary)BritishStandard8.However,inter-operabilityremainsaproblem,especiallywhenequipmentdoesnotcomplywiththisstandard.

Itisveryimportantthattheseissuesaretakenintoaccountwhencarepack-agesarebeingputtogetherthroughtheuseofproperriskassessmentsandappropriateriskmanagementarrangements.

Access and availability

Thisbookincludesexamplesofequipmentthathas thepotentialtocontributetothesafetyandqualityoflifeofpeopleinneed.Theexampleshavenotbeenselectedtopromotetheproductsofanyparticularcompany,butinsteadtoraiseawarenessofwhatcanbedoneandwhatis(orwillsoonbe)available.Whereaproductisfeatured,detailsofthecompanythatsellsormanufacturesithavebeenincluded(seepage39).

Companiesspecialisingintelecareequipmentareincreasinglyabletoper-sonalisetheirproductstomeettheneedsofindividualusers.Furthermore,theyrecognisetheimportanceofdevelopingnewapplicationsfromthisstartingpoint.Manufacturerswouldargue–withsomejustification–thatthescopeofwhattelecareequipmentcandoislimitedbyourimagination,ratherthanbythetechnology.Thecostofequipmentisfalling,andpublicbodiesnowhaveprocurementarrangementsinplacewhichshouldfurtherreducethiscost.Inaddition,companieswelcomecontactwithserviceusersandprofessionalstohelpthemunderstandneedswhichmightbemetthroughnewapplications.

Sometelehealthequipment–bloodpressuremonitors,forexample–canbeboughtonthehighstreet,andthisisatrendthatislikelytoincreaseasexpectationsandunderstandingofthepotentialoftelecareincreases.How-ever,animportantpartofatelecareserviceistheresponse.Thereneedstobesomewayinwhichtheinformationoralertgeneratedbytheequipmentcanbetransmittedtosomeonewiththeskillsandtechnologytogenerateafastandappropriateresponse.

Themajorprovidersoftelecareservicesarelocalauthorities–increasinglyinpartnershipwithhealthauthorities.Purchasingbudgetsare(orshouldbe)availabletoenablepractitionerstoaccessequipmentaspartofacareandsup-portpackage.Alternatively,serviceusersshouldbeabletopurchaseequipmentusingtheirindividualbudgets,ordirectpayments.Inrecentyearsbudgetshavebeenenhancedbygovernmenttelecaresupportgrants,andalthoughsomeoftheseschemesmaynowbecomingtoanend,healthandsocialcarepartnershipswillcontinuetoexploremeansoftransferringresourcessothattelecarecandevelopfurtherusingthesavingsgenerated.

Oneconsequenceofthedevelopmentintelecareservicesoverrecentyearsisthatmanyauthoritieshaverecruitedtelecarecoordinators,orhavedesignatedtelecare‘champions’withinlocalservices.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,telecareforms

partofanindividual(‘personalised’)packageofcareandsupport.Toachievethis,individualneedsmustbeidentifiedandtelecarethenconsideredaspartofthepotentialpersonalisedresponse.

General and specialist assessment of need

ThroughouttheUnitedKingdom,communitycareneedsassessmentisnowconceivedofasamultidisciplinaryprocess9101112.InScotland,muchworkhasbeendonetoencouragetheuseof‘sharedassessments’13whichgathercoredataoneachindividual(suchastheirname,ageandethnicgroup)alongwithinformationonphysical,psychological,spiritual,andphysiologicalneeds.Theprocessinvolvesskilledinterviewingtoelicitwhattheperson’sneedsare,andwhattheirperceptionofthoseneedsisatthattime.Thereisanopportunityforarelativeorclosefriendwhoisacarertocontribute–withthepermissionoftheperson.Theassessmentconcludeswithasummaryofneeds,followedbyproposalsformeetingthemimmediately(wherenecessary)and/oraspartofaplannedprogrammeofcare.(Thiswillbedependentonresourcesbeingavailableandoneligibilitycriteria.)

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

Insomeareas,a‘corepackage’isofferedtoanyonewithcommunitycareneeds.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,whatitisforandwhoiseligible–alongwithanycostswhichneedtobemetbytheserviceuser.

Iftheassessorbelievesthattelecarecanformpartoftheresponseandthepersonagrees,amoredetailedassessmentisthenrequired.Thisshouldincludetheprecisecombinationofdeviceswhichcanbestmeet(incombinationwithotherservices)theperson’sneeds,aswellasclarifyingissuesaroundinstalla-tionandresponse.Thisstageisoftenreferredtoasthe‘specialistassessment’.

Specialist assessments

Thissecondaryassessmentstageisdesignedtopersonalisetheprovisionoftelecarebyidentifyingitemsofequipmentthatappeartobestmeettheper-son’sneeds.Atthisstageadditionalfactors–suchasthedesignofthepropertyandtheavailabilityoftelephonelines,wirelessnetworksandmobilephonesignals–willneedtobeconsidered.Theperson’sfamiliaritywithelectronicequipmentwillalsobetakenintoaccount,alongwithanyothertelecareequip-mentalreadyinstalled.Inaddition,theirroutine(forexamplewhentheyliketogotobedandtheirsleepingpattern)willalsoberecordedtoensurethattheequipmentsupportsthelifestyleanddegreeofindependencetheywant.Finally,theintegrationoftheequipmentwiththerestofthesupportpackage,andtheneedforandavailabilityofaresponse,willallhavetobedetailed.

Thereisno‘best’wayofcarryingoutaspecialistassessment.Howitiscarriedout,andbywhom,islikelytodependonlocalarrangements.Insomeareas,atelecare‘champion’willhavebeenidentifiedwithinthecommunitycareteam.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 person’s name, age and ethnic group, along with information on physical, psychological, spiritual, and physiological needs.

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Themostbasicequipment,suchasfloodalerts,smokealertsandcarbonmonoxidedetectors,reducesriskinobviousways.Forpeoplewithcognitiveimpairments(forexamplearisingfrombraininjury)andsomesensoryimpair-ments,goingoutsideandtravellingcanbeparticularlyrisky.Ifthenatureofsuchrisksisidentified,thenappropriateequipmentcanbeselected.Thisproc-essisillustratedinlatersectionsofthebook.

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

Using telecare to enhance assessment

Somecompanieshavedevelopedequipmentwhichcanlogdetailedinfor-mationaboutaperson’smovement,lifestyleandroutineswithintheirhome.Thisisusedforneedsandriskassessmentpurposes,asdistinctfromsafety.Anexampleis‘JustChecking’14,aportableactivity-monitoringsystemdesignedforpeoplewithdementia(althoughnotnecessarilylimitedtothatgroup).Smallwirelessmovementsensorsaretriggeredasthepersonmovesaroundtheirhome.Thesegenerateanactivitychartwhichcanbeaccessedviaasecureweb-site.Thisverydetailedtimeddatacanprovideamuchmoreaccuratepictureofalifestylethanispossiblefromconversationwithapersonwithcognitiveimpairment,orfromcarerswhodonotliveon-site.Support,protectionandcarearrangementscanthenbetargetedmoreaccuratelyinaperson-centredway.

Carers’ assessment

InScotlandthereisnowadutytoofferinformalcarersanassessmentoftheirneedsarisingfromtheircaringresponsibilities.Thisfocusesonhowtheycanbehelpedtosustaintheircontributiontothecareofapersoninneed15.Researchhasconfirmedtheextenttowhichtelecarecanreducepressureoncarers;supportthemintheircaringrole;increasepeaceofmindaboutthesafetyandwellbeingofthepersontheycarefor;andenablethemtosleepbetter16.Itfol-lowsthatagoodcarers’assessmentwillincludeconsiderationofthepotentialoftelecaretoindirectlybenefitcarersbyhelpingthemcontinuetocare.

Recentresearchconfirms,however,thatmanycarersareunawareoftheavailabilityoftelecare.Itcannotbeassumedthatcarers–especially‘new’car-ers–willbeawareofthepossibilitiestelecareoffers.Equally,carerswillhavetheirownanxieties,andperhapsguilt,aboutusingtechnology.Theymaybeconcernedaboutitsreliabilityorwhethertheywillunderstanditandbeabletomakeitwork.Theseissueswillbeconsideredinmoredetailinlaterchaptersofthisbook.Atthispointitisimportanttoemphasisethatinformationneedstobemadeavailabletocarers,andthatwhereacarer’sviewsaresoughtattheneedsassessmentstagetheirperspectiveandneedsshouldbeincludedandrecorded.17

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

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3: Principles, rights and ethics

Thepreviouschapterdescribedtheimportanceofcarryingoutacarefulneedsandriskassessmentbeforeintroducingtelecare.However,while

goodassessmentwillensurethattheuseoftelecareisperson-centredandneeds-led,itwillnotnecessarilyanswerthequestionofwhethertelecareis‘right’foranindividual.

Asanexample,considertheneedsofapersonwithDown’ssyndromewhoisintheearlystagesofdementia.TheassessmentprocessmayindicatethataGPS-enabledwristwatchcouldreducetheperson’sexposuretoriskwhensheiswayfromhome.Itwillenablehercarers–andacontrolcentre–topinpointheratanytimesothattheycanorganisehelpifshebecomeslostorexperi-encesharassment.Butthedevicecouldalsobeusedtorestrictherfreedomtogowhereshepleases,whichisafundamentalhumanright.Thetelecaredevicecouldbeperceivedasakindofelectronictag,andthishasassociationswithsurveillanceandthecriminaljusticesystem.Seeninthislight,theethicalquestionsassociatedwithtelecarearemoresharplyexposed.

Itmaybedifficulttocomprehensivelyestablishtheneedsandrisksofapersonwhocouldbenefitfromtelecare,whethertheyhavedementia,abraininjury,orsignificantsensoryimpairment.Tocarryoutaneffectiveassessment,asystemlike‘JustChecking’18mightbeintroducedtotheirhomeonatempo-rarybasis.Thiswillprovidecomprehensivedataontheperson’smovementsandroutines,includingeating,sleepingandtoileting.Althoughtheresultingassessmentwillbeverywell-informed,thisdoesnotnecessarilyjustifytheinvasionofprivacythatisalsoinvolved.SimilardilemmasarisewiththeuseofsystemssuchasBetavistawhichallowcontrolcentreoperatorstoseethepersonintheirownhome(albeitwhenanalertistriggered),aswellastalktothemonaphoneline.

Ethicaldilemmassuchastheseshouldbeconsideredusingthecasestudiesfeaturedlaterinthisbook.Thepurposeofthischapteristobrieflydescribeanethicalapproachtotelecare,summarisesomeprincipleswhichneedtobeconsideredwhendecisionsarebeingmade,lookattherelevantlegislationandprovidesomehintsforpractice.

Itisimportanttostressfourthingsattheoutset:

◾ eachperson’sneeds,choicesandbeliefsmustbeafundamentalconsiderationinanydecision

◾ therearefewabsolute‘rightsandwrongs’whichcanbeuniversallyappliedtoeverysituation

◾ ethicalissuesarenotuniquetotelecare.Indeed,theprinciples,valuesandlegalobligationsdiscussedhereapplytoothercareandsupportsettings

◾ nooneactsinavalue-freeorvalue-neutralway–weallhaveourvaluepositions.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-pleconsidertheseissuestobe‘commonsense’or‘obvious’,butinpracticetheyarecomplex.Ourpersonalvaluesareinfluencedbythewaywewerebroughtup,oureducation,theapparentvaluesofourcommunityandbyourlifeexperiences.Forthoseworkingincareandsupportservices,therearealsoourprofessionalvalues.Theseareoftenexpressedthroughcodesofpractice19andfeatureprominentlyinourprofessionaleducationateverylevel.Asaresultwelearn–andtrytointegrateintoourpractice–coreval-uessuchasacommitmenttoconfidentiality,treatingpeoplewithrespect,maintainingdignityandindividuality,andchallengingracism,discriminationandinjustice.

Itisimportantthatpractitionersareawareofthesevalues,andhowtheycometobepartoftheirownvaluesystem.Itisalsoimportanttoappreciatethattheymaynotalwaysbesharedbyindividualserviceusersandcarers,withtheresultantneedtoresolveconflictsthatarisefromdifferentvaluepositions.

Principles

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

◾ autonomy –peopleshouldbeabletodecidewhattheywanttohappenorbedonetothem

◾ beneficence–weshouldtrytodogoodtothepeoplewecarefor◾ non-maleficence–weshouldtrytoavoiddoingpeopleharm◾ justice–peopleshouldbetreatedfairlyandequally

Inadditiontotheseprinciples,Bjørnebysuggeststhattheperspectivesandviewsofallthoseinvolvedintheserviceshouldbesoughtinrelationtobothitsimplementationandthelikelyimpactofitsnon-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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◾ aresponsibilitytoprovideservicesinawaythatpromotestherealisationofanindividual’saspirationsandabilitiesinallaspectsofdailylife

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:thatanyinterventionmustbeintendedtoprovideabenefittothepersonwhichcouldnotbereasonablyobtainedwithoutthatinterventionANDthatthisisthe‘leastrestrictive’optionavailable.AllthreeActsalsoincludearequirementtoconsidertheperson’sviews,alongwiththoseofsignificantothers,likecar-ersandfamily.TheAdultswithIncapacityActisparticularlyrelevanttothisbookbecauseofitsfocusontherightsofpeoplewithsignificantlyimpairedcapacitytomakedecisions.

Capacity and consent

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

Whenworkingwithpeoplewhomaybenefitfromtelecarebutalsolacksufficientcapacitytomakedecisionsaboutriskandqualityoflife,theremaybejustificationforoverrulingthesefundamentalhumanrights.However,theseareverysignificantjudgementswhichshouldbemadecarefullyandlegally.Itmaytranspirethataperson’scapacityisnotimpairedafterall,butinsteadtheirmeansofcommunication,orabilitytocommunicate,hasnotbeenproperlyconsidered.Thisisgenerallyapparentwhenthepersonhasahearingorspeechimpairment,orperhapshashadastroke,butmaybelessobviouswhenthepersonhasdementiaoralearningdisability.

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

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Wheredecisionsaremadeonbehalfofanindividualwholacksthecapacitytomakechoicesforthemselves,thecourseofactionshouldbetime-limited,regularlyreviewedandlimitedtotheparticularservicesanddecisionsunderconsideration.Suchdecisionsshouldneverbeconsideredasfinalorpermanent.

Policy and procedures

Individualagencieswillhavepolicies,proceduresandguidelinesinplacewhichensurethatstaffremainwithinthelawwhendeliveringservices–includingtelecareservices.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:

◾ beawareofyourownpersonalandprofessionalvaluesystems–andhowthesemightconflictwiththepersonyouareworkingwithandtheircarers

◾ beawareoftheproceduresofyouragency,particularlythosewhicharedesignedtoprotecttheperson’srighttochoose,todignity,toprivacyandtoconfidentiality

◾ ascertainasfullyaspossibletheviewsoftheperson,theircarersandotherstaffworkingwiththem.Doyouunderstandwhattheyaresayingtoyou?

◾ arethereissuesofcapacitytoconsent?Ifso,whatarethelegalissuesaroundoverridingtheirrighttochoiceandconsent?

◾ inwhatwaysmightthetelecaresolutionlimitthisperson’sfreedomsandrights?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 learning disability

Thischapterexploresthepotentialandvalueoftelecaretopeoplewithalearningdisability.Itbeginswithsomedefinitionsofthenatureoflearn-

ingdisability,thengoesontodiscussadvantagesandpotentialbarrierswithsuggestionsforovercomingthese.Aprocedureforbringingtelecareintothedailylivesofpeoplewithalearningdisability(includingacasestudy)isthenoutlined.Wherepossible,photographsofthepiecesofequipmentreferredtohavebeenincluded.Numbersidentifyingpicturesalsolinkintomanufacturers’contactdetailsonpage39.

Definitions: whom are we talking about?

Definitionsoflearningdisabilityemphasisetheneedtoseeeachpersonasanindividualandrecognisetheimportanceoftheirchoices,accesstopublicandcommunitylife,lifelonglearningandemployment.The same as you? A review of services for people with learning disabilities24takesthisfurther,stressingtheimportanceofaccessinglocalandspecialistservicestogethelpandsupportsothatchoicescanbemade.Thereviewdefineslearningdisabilityas:

A significant, lifelong experience that has three components: reduced ability to understand new or complex information or to learn new skills, reduced ability to cope independently, [and] onset before adulthood with a lasting effect on the individual’s development�

InScotlanditisestimatedthataround24peopleinevery1,000havealearningdisabilitywiththreetofourofthisnumberhavingprofoundormultipledis-abilities25.Peoplewithalearningdisabilityarenowlivingformuchlonger.Forexample,inthe1950sthelifeexpectancyforapersonwithDown’ssyndromewas12,whereasformanytodayitisover6026.Thisisduetoanumberoffac-tors,includingimprovedmedicalcare,especiallyatbirth,andanimprovementinopportunitiesleadingtoabetterqualityoflife.

Themaincauseofdeathamongpeoplewithlearningdisabilitiesisres-piratorydisease27and,asmightbeexpected,lifeexpectancyisatitslowestamongthosewithhighersupportneeds.Crucially,therehavebeenanumberofreporteddeathsthatwerepreventableamongpeoplewithalearningdis-ability28.Takingaperson-centredapproachtocareandencouragingthefamilyandcarersofpeoplewithlearningdisabilitiestohavehigherexpectationsshouldleadtobetterqualityoflife.Similarly,engagingthepersoninmeaningfulactivities(whichhavethepotentialtoenhancequalityoflife)shouldincludeconsiderationofnewwaysofworkingandprovidingsupport,suchastelecare.

In Scotland it is estimated that around 24 people in every 1,000 have a learning disability.

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Communication

Communicationwarrantsadedicatedsectionwhenwritingaboutpeoplewithlearningdisabilitiesbecausedetectingdistressorworrybecomesmoredifficultifthepersonisnotabletotalkabouthowtheyarefeeling.Informedconsentrequiresgoodcommunicationbetweenthepersonwithalearningdisabilityandacarerwhoisfamiliartothem.Thisisessentialinmakingsurethatnon-verbalsignsthatcanshowdistressordispleasurearepickedup.Whenexplaininghowtelecarewillbeintroducedandwillwork,itisessentialtousethecommunica-tionmethodthatthepersonismostfamiliarwith.Ifissuesofcapacitytoconsentareinvolved,thiswillalsoensurecompliancewithguidancelaiddownbytheMentalWelfareCommissionforScotland(2006)29.Communicationmethodscanbeverbalornon-verbalandmayincludeMakaton,useofpictures,bodylanguageorTalkingMats30,ifthisisastyleofcommunicationthatthepersonregularlyuses.Communicationneedsmaychangeasthepersongetsolder,sothemethodofcommunicationusedforongoingconsentmayneedtobeadaptedwhenreviewingandevaluatingthesuccessoftelecareortelehealth.

Specific learning disabilities and their implications for telecare

Someactionsareassociatedwithspecifictypesoflearningdisabilities.ExamplesincludeimpulsivenessinAngelmansyndromeorpsychosisinPrader-Willisyn-drome.Beforeanyformoftechnologycanbeconsideredtheremustbeaclearunderstandingofwhatmayupsettheindividual,andhencebeunsuitable.Forexample,apersonwhoisafraidofsuddenorloudnoiseswillnotreactwelltoanalarmthatgoesoffintheirroomoranautomatedvoicethatsoundsiftheyleavethecookeronfortoolong.Thiscanmakeasituationworse,andpromptthepersontobehaveinappropriatelyorevenaggressively–yettheresponsehasbeencausedbythesituationandtheirenvironmentandisavoidable.Otherlessintrusiveinterventions,suchassilentsensors,maybemoreappropriateifthepersonwouldliketousethem.

Healthneedswillchangeasthepersongetolder.Forexample,adultswithDown’ssyndromearemorelikelytodevelopdementiaatanearlieragethantherestofthepopulation.Thismeansthatlifelongpreparationforindependentlivingisnotanoptionassupportneedswillincrease.Thisdoesnotnecessarilymaketheuseoftelecareinappropriate.Instead,itmeansthatareviewofthemethodandformoftechnologyusedneedstotakeplaceonaregularbasistoallowforchangingskillsandcapacity.

Communication needs may change as the person gets older, so the method of communication used for ongoing consent may need to be adapted when reviewing and evaluating the success of telecare or telehealth.

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1

5

8

2 3

64

7

Examples of telecare for people with a learning disability

Pull cord alarm 1 . Thiscanbepulledbythepersontoactivateanalarmwhichalertsstaffnearbyorinacallcentre.Itisonlyusefulifthepersonisnearenoughtothecordorabletomovetopullit.

Pendant. Communityalarmequipmentwhichcanbewornaroundtheneck2 orwrist 3 .Abuttonispressedtospeaktosomeoneatthecallcentre.

Temperature monitor 4 . Thisdetectsextremesoftemperature(hotorcold)intheroomwhereitisplaced.Thehightemperaturefunctioncandetectafireorifthecookerhasbeenlefton.Thelowalertcanflagupariskofhypothermiaorindicateifadoorhasbeenleftopen.

Flood detector 5 6 7 . Thisisactivatedwhenthefloorbecomeswet.How-ever,thesedevicescanbeover-sensitiveandmaybetriggeredbyaminimalamountofwater.

Smoke detector 8 . Thiswillpickupevensmallamountsofsmoke,althoughitcanbeverysensitivetosourcesofsmokesuchasburningtoastorcandles.Itneedstobepositionedcarefullytoavoidfalsealarms.

9

20

10

13 14

11

15

12

Carbon monoxide detector 9 . Thiscaneitheralertacallcentreorautomati-callyshutoffthegassupply,althoughgettingitswitchedonagainmayleadtodifficulties.

Door contact 10 . Thistwo-partdeviceisfittedtothedooranditsframe.Staffarealertedwhenthedoorisnotclosedorifitisopenedandshutfrequently.

Safe door entry system 11 . Thisenablestheusertoseeorhearwhoisoutsidebeforetheyopenthedoor.Somesystemsareconnectedtoatelevisionsothatthepersoncanseethecallerbeforetheydecidetoopenthedoor.Otherscanrecordconversationsthattakeplacebeforethedoorisopened.

Passive infrared (PIR) beam 12 . Thisdetectsmovementorlackofmovement.Itcanactivateanalarmiftherehasbeennomovementwhenthereshouldbe–forexampleifsomeoneisunabletogetoutofbedoroutoftheirchair.Alternativelyitcanbeactivatedifthereismovementduringthenightwhenthisisnotexpected.

Medication reminders 13 useanalarmasapromptandcanhelpensurethatmedicationistakenatthesametimeeveryday.Sometypesareincorpo-ratedintoawristwatch 14 .Itisimportantthatthepersonisnotfrightenedorupsetbythesuddennoisewhenthealarmgoesoff,andifthereminderdeviceisintheirhouse,theyneedtobeathomewhenitisactivatedinorderforittobeeffective.

Fall detector 15 16 21 . Thiscanbeattachedtoclothesandisactivatedifthepersonfalls.Inordertobeeffectiveitmustbewornatalltimes.

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20 21

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Enuresis sensor 17 . Thisisathinsheetthatisplacedonthebedbetweenthemattressandthesheet.Itactivatesanalarmifthepersonwetsthebed,althoughitcanalsobesetoffbyexcessivesweating.

Seizure monitor 18 . Thisdetectsseizuresbymonitoringformovementwhereisitplaced/worn.Monitorsarenotalwayseffectiveindetectingminorseizures,althoughtheycanpreventtheneedforstafforparentstocheckthepersonsofrequentlyovernight.

Mobile phone 19 . Thiscanactasameansofcommunicationwithcarersandfamily.Tobeeffectiveitneedstobechargedandincredit.

GPS (global positioning system) 20 21 . AGPS-enabledmobilephone,watch,shoesorotherdevicecanbeusedtolocateapersonwhohaslefttheirhomebutnotarrivedattheirdestination.Inorderforthesystemtoworkthepersonneedstobewearingorcarryingthedevicewhentheygoout.

Computer with internet access. Computerscanbeusedtoaidlifestoryworkusingtechniquesincludingdigitalphotography.

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Case study 3

Anne has been given a phone with additional picture buttons 24 corresponding to family members and staff � Th ese can be programmed to speed-dial the person pictured� She doesn’t always remember when she last spoke to her family and sometimes calls them up to 50 times a day� In addition, she can’t remember how to use the answer phone so doesn’t pick up any messages� Despite the valid idea of using photographs to help Anne identify who she wants to phone, the benefi t of the phone is only partly being seen by Anne and her family�

spoke to her family and sometimes calls them up

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Case study 1

Louise lives with her parents and often has seizures at night� Her mother gets very little rest or respite because she is constantly checking Louise during the night� After Louise is provided with a seizure monitor 22 , her mother can sleep knowing that her pager will go off if Louise has a seizure overnight�

Case study 2

Pauline has just moved into her own fl at with outreach support from staff � Her family are concerned that she may forget to turn off the cooker, especially as staff will no longer be on hand to check� A temperature monitor 23 is installed in the kitchen so that a selected telephone number is automatically called if extremes of temperature are detected in the kitchen� If this happens, staff will be notifi ed and will visit Pauline immediately, providing help if needed�

can sleep knowing that her pager will go off if

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in the kitchen so that a selected telephone number

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Case studies

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Case study 6

Paula has built-in safety equipment in her fl at including a smoke detector, a carbon monoxide detector and a fl ood detector 27 for the bathroom fl oor so that a call centre is alerted if she leaves the bath running� She also has timers which operate lamps and dimmer switches, an iron with a cut-off switch, plus safer versions of ordinary equipment like a kettle with automatic cut-off � All of this has been chosen and installed after a review of her needs in the light of telecare availability and her understanding of how to use it� Th e assistive technology and telecare doesn’t infringe on Paula’s privacy and provides security for her and peace of mind for her family� Th e devices were introduced one at a time so that she became fully familiar with each one before another intervention was introduced�

chosen and installed after a review of her needs in the light of telecare

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Case study 4

Emma has a medication reminder that is programmed to go off at 5�15pm daily, a time when she is always at home� Th is is a trigger for her to get a glass of water and take her prescription for hypothyroidism� Th e medication automatically comes out of the pill box 25 at the set time� Not only does this ensure that she remembers to take her medication (which she frequently forgot to do before the system was introduced), she now takes it at the same time every day, which means that she is getting the maximum benefi t from it�

Case study 5

Bill lives alone and staff worry about him answering the door to strangers at night� His door phone system 26 enables him to speak to the caller before opening the door� It includes the option of recording the conversations he has through the intercom so that if a problem arises (for example there is an adult protection issue) this information can be used as evidence� To protect Bill’s privacy his conversations are not routinely listened to, although the information is available if an issue arises�

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speak to the caller before opening the door� It includes the option

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Case study 7

James lives alone and his family are concerned for his safety because he has been going out late at night� A sensor 28 is fi tted to his door that is activated on exit between midnight and 7am� When this is triggered, a mobile unit is alerted and someone from the unit brings James home� Whilst there may be risk factors associated with anyone being outside after midnight, it was decided that this was an inappropriate and unnecessary risk for James� However, there is no automatic reason why a person with a learning disability should not socialise after midnight� It is important to note that whilst James’s family felt he was safer with this form of telecare, it may not necessarily have been his choice�

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Benefi ts of using telecare

Telecarecan,ifintroducedappropriately,supportsafetyandimprovequalityoflife.ExamplesfromAspinall(2008)31showhowindependencewasdevel-opedamongresidentswithalearningdisabilityinasupportedgrouphomemanagedbyHomeFarmTrust.Here,independenttravelbecameakeyfocusamongresidents,assistedbytheuseofabasicmobilephone,insomecaseswithbuilt-inGPS.Whenotherformsoftelecarewereimplemented,staffdidnothavetoremindresidentstodothingsaroundthehousesooften.Whilstthisdidnotreducetheimportanceofstaffcontact,itenabledtheindividualstoachievemoreforthemselves.

Toworkwell,telecareneedstomeetthespecificneedsofthepersonwithalearningdisability.Whatissuccessfulforonepersonwillnotnecessarilyworkforsomeoneelse.Factorstotakeintoaccount,allofwhichoccurmoreoftenamongpeoplewithlearningdisabilities,include:

◾ lowordeterioratingcognitiveabilities◾ lowconcentration◾ limitedshort-termmemory◾ poorcoordination◾ increasedlikelihoodofdepression◾ reducedcommunicationskills

Keyissuesincludereinforcingwellbeing,individualityandeverydayskills.Theperson’slikes,dislikesandpreferencesmustbeknown,andhavingaccesstothisinformation,perhapsthroughlifestorywork,isessentialbeforeanydiscussionoftelecarebegins.Thiswillensurethattheperson’sambitionsandlongertermgoalscanbeincorporatedintoanyplannedinterventions.Inthesameway,understandingtheirfearsorknowingaboutpreviousnegativeexperienceswillavoidintroducingtechnologythatmaycausedistress.

Technologycanalsoplayaroleinaddressingtheunmethealthandscreeningneedsofpeoplewithlearningdisabilities.Anexampleofthiskindofinterven-tionusedbypeoplewhodonothavealearningdisabilityisahomebloodpressuremonitorwhichsendsresultstotheperson’sGPpracticeelectronically.

If introduced appropriately, telecare can support safety and improve quality of life.

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Thistypeofinterventioncanbeapplicabletopeoplewithlearningdisability–providingappropriateadjustmentsaremadeandarrangementsareinplacetoensureinformedconsent.TelehealthhasthepotentialtorecordbaselineassessmentsinpeoplewithDown’ssyndromeovertheageof30aspartofscreeningfordementia.Resultscanbesubmittedelectronicallytotrackanychangesoveraperiodoftime.

Telecarecanalsocontributetohealthpromotionamongpeoplewithalearningdisability.AScottishprojectthatmonitoredthelifestyleofpeoplewithlearningdisabilitiesandencouragedadaptationsforahealthierlifestylewastakenastagefurtherintheUSA.OlderpeopleinareasofNewYorkreceivedregularphonecallsfromapersonalcoachwiththeaimofincreasingtheirphysicalactivitylevels32.InasimilarprojectinCanada,peoplewithlearningdisabilitiesreceivedface-to-facetraining,followedbyindividualisedtelephonesupportinconjunctionwithanexerciseDVDwhichtheyusedathome33.Whilstthisclearlydoesnotpromotecommunityinvolvement,itaddressesareasthatmanypeoplewithalearningdisabilitydonotenterinto,namelyphysicalactiv-ityandeducation.Bypromotingactivityandexercise,italsotacklestheknownproblemofobesityamongsomepeoplewithalearningdisability.Measuressuchasthismayincreaseaperson’sconfidencesufficientlytoencouragethemtoenrolinanexerciseclassinthelongerterm.

Issues for carers and for care and support staff

Theparentsofapersonwithlearningdisabilitieswillnotnecessarilybeimme-diatelysupportiveoftheuseoftechnologyfortheirsonordaughter,orbewillingtomonitoritsuse.Olderparentsinparticularmayhavehaddifferentexperiencesofcaring,oftenfightingforservicesatatimewhentheysimplydidnotexist.Asaresult,theyareoftenmorereluctanttoseekhelporsupport34,andthiscanbereflectedinareluctancetoworktowardsmoreindependentlivingfortheirsonordaughter.Theymayreactnegativelytothesuggestionoftelecare,asitcanbeseenastheprecursorofareductioninotherservices,especiallystaffsupport.Theseviewsmustbetakenintoaccountbeforebring-ingnewtechnologyintothefamilyhome.Clear,honestexplanation,andfullinformation,areessential.

Goodplanningatanearlystagecanavoidtheneedforcrisisdecisionsbeingmadeasaparentages.Tobeeffective,practicalsupportwithinoroutwiththehomeneedstobepartofalong-termcarepackagethatisregularlyreviewedandincorporatestheneedsofthepersonwithalearningdisability,alongwiththoseoftheirparentsorcarers.Forconsistency,respitecarersandthoseofferingshortbreaksneedtobeawareofanyuseoftechnologybytheperson.Implementingtelecareeffectivelywillrequireclearexplanationsforcarers,aswellasforthepersonwithlearningdisability.Thiscouldincludeprovidingvisualpromptsandleavinginstructionswiththefamilyorcarerinappropriateformatssuchaseasy-read,pictorialformorlargeprint.

Carersandcarestaffalsoneedappropriatetrainingandsupportintheuseoftelecare.Althoughuseofmobilephonesandtheinternetiswidespread,itshouldnotautomaticallybeassumedthatstafforfamilymemberswillbefamiliarwiththem.Staffmayhavenodesiretousethesetechnologiesthem-selves,somayhavedifficultyincorporatingthemintotheirdailywork.Whatmaybeseenasareluctancetosupportapersonwithalearningdisabilitymayinrealitybeduetofeelingsofuncertainlyaboutthetechnology,andthese

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

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feelingsneedtobeacknowledged.Theseissuescanusuallybeovercomebysupportandtraining.Insomecasesthecarerorstaff-membermaylearnalong-sidethepersonwithalearningdisability,whichcanprovebeneficialforboth.Trainingandsupportforstaffareessential,andshouldformpartofpersonaldevelopmentplanswhichwillensurethatthisareaofworkisrecognisedandacknowledged.Additionally,clearlinesofaccountabilityandreportingareneeded.Ifnecessary,jobdescriptionsandpersonspecificationsshouldbeexpandedforbothexistingandnewstafftoreflecttheirexpandedrole.

Itisimportantthatmorethanonestafforfamilymemberisfamiliarwithanytechnologythatisintroduced.Therewillnormallyneedtobesomeoneonshiftatalltimeswhoisfamiliarwithhoweachpieceofequipmentworks.Equally,callcentrestaffneedtobeawarethatthepersontheyarerespond-ingtohasalearningdisabilityandmaynotcommunicateclearly.Discussingtheseissuesregularlyatteammeetingswillmeanthatstaffarefamiliarwiththeissuestheymayencounter,ratherthanbecomingstressedwhentheyfaceaproblemorreceiveacall.Thisisespeciallyimportantinorganisationswherethereisahighstaffturnoverorregularuseofagencystaff.

Whentelecareisfirstintroduced,paidstaffmayhaveconcernsabouttheirjobsecurityandbefearfulofbeingreplacedbytechnology.Althoughtheintroductionoftelecaremayopenuppossibilitiesfornewordifferentroles,thisneednotbeattheexpenseofcontacttimeandsocialinteractionwithpeoplewhohavelearningdisabilities–especiallythoselivingalone,forwhomlonelinessisaveryrealissue.Instead,routine‘supervision’orcheckvisitscanbereplacedbyequipment,freeingupstafftimeformoreworthwhilesocialinteraction.Lonelinesshasbeenidentifiedinresearch35asatriggerfactorfordepressionandasbeingdetrimentaltoindependentliving.Thisisanissuethatcanbecomemorepronouncedasthepersonagesandtheirneedschange.Companionshipwillstillbeneededatnightfortheresidentwhodoesnotsleepwellorwhomayconfusenightandday.Whattelecarecanpotentiallyreduceistheamountofintrusive‘checking’thattakesplaceatnight,disturbingthepersonwhoissleeping.

Potential barriers and how to overcome them

Whenconsideringtheuseoftelecaretosupportapersonwithlearningdis-abilities,itisimportanttoensurethatthetechnologydoesnotintroduceanelementofcontrolovertheperson’sbehaviouroractivities.Instead,telecareshouldsupportamovetowardsindependenceforpeoplewithalearningdis-ability36.Thedecisiontointroducetelecareshouldnotbebasedsolelyontheperceivedlikelihoodofitssuccessorfailure.Ifstafforfamilymembershavelowexpectationsofaperson’sabilitytousetelecare,theymaysubconsciouslyexpectthemtofailfromtheoutset.Thedangerofthisself-fulfillingprophecyisthatitcanleadtoaninaccurateassessmentofhowsuccessfultelecarehasbeen.Theconsequencesofthiscouldbeserious:forexampleaflawedassess-mentcouldmeanthatthepersoniswronglyperceivedasnotabletocopewheretheyareliving.Beingpreparedtotryouttelecarewithanopenmindinvolvesacknowledgingriskwithouttakingcontrolawayfromthepersonwithalearningdisability.

Thequestionofchoiceforthepersonwithalearningdisabilitymustalsobeconsidered.Itisimportantthattheyarenotgivenaseriesofunsatisfactoryoptionstochoosefrom.Equally,choicesshouldnotbebasedonthepreferences

It is important that more than one staff or family member is familiar with any technology that is introduced.

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ofcarersorstaff(althoughtheirsupportandcooperationisrequired).Telecareneedstobepresentedasarealisticoptionthatcanbetriedout,andisnotnecessarilyapermanentarrangement.

Thecostoftelecaremustbediscussed,alongwithconfirmationofwhowillprovidethefunding.Inpractice,theamountofexpendituredoesnothavetobehigh.Forinstance,theuseofadigitalcameratoproduceaphotographictimetableofdailyactivitiesorapictorialstaffrotacanbeasimplebuteffectiveaidtoindependentliving.

Manypeoplewithlearningdisabilitiesnowhaveamobilephoneandusetheinternet,yetsocialnetworkingsitesarenotwellusedbypeoplewithalearningdisability.Thisisduetothecomplicatedregistrationandsigninginprocess,alackofclearlinkstomovebetweenpagesandtheinabilitytochangethesizeofthetextandbackgroundcolour37.Ifpeoplewithlearningdisabilitiesaretobenefitfromthesesitestheywillneedadditionalsupporttoovercometheseinitialstart-updifficulties.Goodriskassessmentwillalsoconsiderthepotentialvulnerabilityoftheindividualserviceuseronsuchsites,andhowtheseriskscanbemanagedappropriately.

Introducing telecare – a four-stage procedure

Thefollowingprocedureoutlinesanapproachtointroducingtelecarethatistailoredtopeoplewhohavelearningdisabilities.Itappliestheprinciplessetoutintheearlierchaptersofthisbook,particularlytheimportanceofcarryingoutapersonalisedneedsandriskassessmentforeachperson.

Stage 1. Pre-telecare

◾ identifytheareaofdifficultyandwhothisisadifficultyfor–thepersonwithalearningdisability,theirfamily,carersorserviceplanners

◾ identifytheareaofdevelopmentorneedthatisbeingsupportedandwhowillbenefitfromanyintervention–thepersonwithalearningdisability,theirfamily,carersorserviceplanners.Itisimportanttofocusonsupportingpositiveareasoftheperson’slife,ratherthanfocusingondeficitsandproblems

◾ recordthenon-technologicaladaptationsorchangesthathavebeentriedpriortotelecare.Thesemayincludechangestothelivingspacesuchaslighting,décor,pictorialtimetables/instructions,orreductionsinnoiselevels.Thereviewprocessshouldalsocoverstaffingissues,andstaffshouldbeaskedtoconsiderwhethertheircurrentapproachmayunwittinglybeaffectingthebehaviourorwellbeingoftheperson.Itisparticularlyimportanttothinkthroughanyareasthatareconsideredtobemoreproblematicforstaffthanthepersonwithalearningdisabilityandtomakesurethattheperson’sneedsarebeingprioritisedappropriately

◾ ensurethatsocialintervention(perhapsintheformoflifestorywork)hasbegunsothatthebackground,likes,dislikesandfuturewishesthepersoncanbedetermined.Thisworkwillhavelong-termbenefits,forinstancebyhelpinginsituationswherenewstaffareunfamiliarwiththeperson,particularlyifthereisreducedverbalcommunication

If staff or family members have low expectations of a person’s ability to use telecare, they may subconsciously expect them to fail from the outset.

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◾ identifyanyalternativehealthmonitoringthatcouldbeputinplacepriortotheintroductionoftelehealth.Optionsmayincludeanincreaseinscreening,anincreaseinphysicalactivity,orenrolmentinanexerciseclass,ifappropriate

◾ recordwherethepersonlivesandwhotheirmaincaregiveris.Supportfromthispersonwillbeneededtoensurethefullbenefitoftelecare.Itisimportanttoestablishhowlongthepersonwillbelivinginthisaccommodation,andwhethertheformoftechnologyproposedcanmovewiththemifneeded

◾ considerhowtheperson’shealthneedsarebeingmonitored.Assomeoneages,changinghealthneedsmayrequiredifferentinterventionsandregularadaptationswhichmustbetailoredtotheindividual

◾ recorddetailsofanyequipmentthathasalreadybeenintroducedandwhoismonitoringthis(includesingledevicesthatarenotconnectedtoanoutsidesourceorcontact)

Onlyhavinglookedforandconsideredalternativesisitappropriatetomoveontostagetwoandintroducefirst-,second-orthird-generationtelecare.

Stage 2. Introducing telecare

◾ confirmandrecordthemethodofcommunicationthatwillbeusedtodiscusstelecarewiththepersonwhohasalearningdisability.Thesamewords,signsorpicturesshouldbeusedconsistently.Priortothediscussion,itisessentialtobuildknowledgeoftheperson’spreferencesandfears.Thiscanbebasedonlifestorywork(providingitisregularlyupdated)

◾ thestaff-memberdiscussingtelecareneedstobeuptodatewiththeoptionsthatareavailableandhowtheymaybeimplemented.Thisisessentialtoensurethattheycanclearlyexplainanddiscusstheoptionswiththepersonwithalearningdisability,otherstaffandfamilycarer(s)

◾ identifywhowillprovideinstructionortrainingintheuseoftelecare,andwhowillreceivethis.Aspartofthisprocess,anaudioorpictorialguideoreasy-readinstructionsheetshouldbeleftwiththepersonandtheircarers.ThiscouldtaketheformofaDVDorCDwhichcanbereplayed.Findoutwhetherthisalreadyexistsfortheformoftelecaretobeintroduced,orwhetheritneedstoberecordedbystaff.Toolslikethiswillhelpbothfamilycarersandstaff-members,includingreliefandnightstaffwhomaynotbefamiliarwiththeformoftelecarebeingused

◾ obtainconsenttointroducetelecarefromthepersonwithalearningdisability.Consentdoesnothavetobesoughtorgivenverbally–pictorialpresentationisanoptioniftheinformationislaidoutappropriately,althoughtheprocessdoesneedtobewitnessedandrecordedbyacarer.Itshouldalsobemadecleartothepersonthattheycanchangetheirmindatanytime,andthisoptionshouldbereinforcedatregularreviews

◾ obtainconsentfromsomeonewhoisfamiliarwiththepersonandwiththeirnon-verbalcommunicationmethods,ifappropriate

◾ ifconsentisrefusedthenitmustbeclearthatthisreflectstheperson’sowndecision,ratherthantheinfluenceoffamily,friendsorstaff.Theimplicationsofrefusingconsent–suchastheriskofthebathroomflooding–shouldbediscussedwiththeperson

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◾ confirmtheformoftelecarethathasbeenagreedto,howregularlyitsusewillbereviewed,andbywhom.Thedevice(s)mayneedtobeadaptedasthepersongetolderandtheirhealthneedschange

◾ makesurethatitisclearwhowillpayforthetelecareandthatallhiddencosts,suchasadditionalelectricityortelephonebills,arecalculated

◾ decidehowoftentoholdreviewmeetingsandwhowillbeinvolvedinthese

Stage 3. Implementing telecare

◾ theformoftelecareintroducedneedstobeunderstoodbythepersonwithlearningdisabilitiesandtheircarersandshouldnotbetoocomplex.Itneedstobeclearwhoisresponsibleformaintenanceandupkeep

◾ onlyonenewinterventionshouldbeimplementedatatimetoallowthepersonandtheircarerstobecomefamiliarwithit.Onedevicemaybeenough,butifothersaregoingtobeintroducedthefullprocedure(above)shouldberepeatedtomakesureitisclearwhythedeviceisbeingusedandwhowillbenefit

◾ ifthenumberofvisitsbystafforhealthprofessionalstoaperson’shomeistobereducedasaresultoftelecareortelehealth,serviceplannersshouldmakesurethatstaffareabletocompensateforthiswithsocialvisits.Thisisnotforsurveillanceormonitoring,buttoprovidecompanionshipandsocialcontact,andtopreventlonelinessandisolation.Telecareshouldnotreplaceface-to-facecontact,butinsteadallowashiftofemphasisfrompracticalhelptosocialsupport

◾ itisimportanttoregularlyremindstaffandfamilymembersthatthereasonforintroducingtelecareisittoincreasesafety,improvewellbeing,and/orsupportdailyliving.Bybeingclearaboutthisremit,changescanbemadeasnecessary

Stage 4. Reviewing telecare

Regularreviewsareessentialtoensurethattelecareiscontinuingtoprovideappropriatesupport.

◾ beclearaboutwhattheevaluationprocessinvolves.Thismeanscarryingoutregularreviewsthatinvolvethepersonwithalearningdisability,alongwithotherswhoprovidecareforthem.Arecordshouldbekeptofreviewmeetingssothatsuccessfuluseoftelecarecanbedocumentedandtheimpactofanychangesnoted

◾ althougheachimplementationisanindividualprocessandmaynotresultinthesameoutcomeforsomeoneelse,itisstillimportanttorecordwhatworkedandwhatdidn’t.Thiswillhelpstafforcarersunderstandwhathasbeentriedandcanflaguppotentialissuesduringfutureimplementations

Regular reviews are essential to ensure that telecare continues to provide appropriate support.

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An example of introducing telecare in practice

Davidis51andhasalearningdisability.Helivesinasingleroominasharedhousewithtwofriendsandhasbeenwakingatnight,possiblyasaresultofseizureswhichstartedfourmonthsago.Staffcheckhisroomeveryhalfhouratnight,oftendisturbinghimfurther.Thisleaveshimtiredandbad-temperedduringtheday.Davidenjoysgardeningandtravelsbybustothelocalgardencentre,whereheisavolunteertwodaysaweek.Twicerecentlyhehasgotoffthebusatthewrongstop.Hisvoluntaryworkisveryimportanttohim,asislivingsemi-independently.Hehasfriendsthereandhasknownmanyofthestaffforyears.Untilfivemonthsagowhenhediedsuddenly,David’sbrotherRobertvisitedeveryweekend.

Stage 1. Pre-telecare

◾ withDavid’sconsent,griefcounsellingwassoughtandalifestorybook 29 developedwithstafftoencouragehimtotalkaboutandrememberhisbrother

◾ acardwasmadeonthecomputertohandtothebusdriverandthishelpedensurethatDavidgotoffattherightstopwhentravellingtothegardencentre.Davidalsostartedcarryingalarge-buttonedmobilephonewithpresetnumberswhichmeanthecouldphonethegrouphomeorthegardencentreifhegotlost.Eachofthechangesdescribedwasintroducedseparately,asoutlinedbytheprocedureabove

◾ itwasimportanttoclarifywhowouldbenefitfromtheseinterventions,withDavid’sneedsbeingseenasmostimportant.However,therewerealsobenefitsforstaffatthegrouphomeandthegardencentre

◾ David’skeyworkerandhermanagerattendedtrainingintheuseoftelecare.Thiswasdiscussedinsupervisionandformedpartofanagreedtraininganddevelopmentprogramme.Informationgainedfromthetrainingwaspassedtothestaffteamattheteammeeting

Stage 2. Introducing telecare

◾ staffspokewithDavidaboutwhethertheinterventionsweremeetingallhisneeds.Therewasstilltheoutstandingissueofdisturbanceatnight,soformsoftelecarewereexploredtosupportDavidinthisarea.Theoptionselected(becauseitwasconsideredtobetheleastrestrictiveavailable)wasaseizuremonitor 30 .Thiswasusedatnightandreducedtheamountofnight-timecheckingthatwasrequired.Davidwasgivenverbalandpictorialinformationabouthowthepadworked,alongwithademonstrationbystaff

◾ aswiththeotherinterventions,itwasimportanttoclarifywhowouldbenefitfromintroducingtheseizuremonitor.ItwasfoundthatDavid’squalityoflifeimprovedasaresultofhimsleepingbetteratnight.Collectively,theinterventionsenabledhiswishestobemetashehadexpressedadesiretostayinhisgrouphomeandcontinuevolunteeringatthegardencentre

◾ fourotherstaff,includingnightstaff,attendedtrainingintheuseoftelecare

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Stage 3. Implementing telecare

◾ David’skeyworkertooktheleadroleinmonitoringthetelecareused.Shemadeanoteinthestaffdiarythatheshouldbeaskedifhismobilephonewaschargedandincrediteveryfewdays.Staffwereremindedthatintroducingthetechnologywasnotaboutcontrol.Forexample,Davidcouldstillchoosetogetupinthenightifhewasunabletosleep,andattemptswouldnotbemadetorestricthismovements

Stage 4. Reviewing telecare

◾ hadDavidnotgivenhisconsenttosomeorallofthechanges,thepossibleoutcomesorconsequenceswouldhavebeenexplainedtohim,alongwiththeoptiontochangehismindlater.Heknewthathecouldtryasolutionwithouthavingtokeepitinplaceifhewasn’thappywithit.TheremayhavebeenagreaterrisktoDavidifsomeorallofthechangesweren’tmade

◾ reviewstookplaceeverythreemonthsandinvolvedDavid,stafffromthegrouphomeandstafffromthegardencentre.Themeetingswereformal,withnoteskeptsothatDavidandeveryoneinvolvedinhiscarehadarecordofanychangesthatwereagreed.Informalmonitoringalsotookplaceonanongoingbasis.ThisledstafftorealisethatDavidwasnotalwaystakinghiscardonthebuswithhimbecausehehadgottoknowtheregulardriver,whoalwaysremindedhimwhentogetoff.Thisbecameproblematicwhenanotherdriverwasonduty.Whenstaffrealisedwhatwashappening,David’skeyworkerputapictorialsignonthebackofhisdoortoaskhimifhehadhiscardwithhimbeforeheleftforthebus.Hethenhadtheoptionofusingitiftherewasadifferentbusdriver

TherearenorightorwronganswersinascenariosuchasDavid’s,asresponseswilldifferbetweenindividuals.Whatisimportantisbeingabletojustifythedecisionsthathavebeenmade.Withtheinclusionoftelecareinhissupportplan,Davidwasabletokeephisvolunteerplacementandcontinuetravellingindependently.Hissocialandemotionalneedswerealsoaddressed.

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5: Training programme

Thissectioncontainscontentandasuggestedtimetableforaone-daytrain-ingprogrammeonhowtelecarecancontributetothecareandsupport

ofpeoplewithalearningdisability.Itmayalsoprovideabasisforalongerprogrammeforspecialistassessorsor‘telecarechampions’ifcombinedwith‘shadowing’experiencesandvisitstoacontrolcentre,responseteam,andcontactwithserviceusersalreadyexperiencedintelecare.Similarly,itmaybeofvaluetocourseleadersofqualifyingprogrammesforsocialworkers,occu-pationaltherapistsandcommunitynurses.

Itisanoutlineprogrammewhichskilledtrainerswillneedtoadapttotheparticulartrainingneedsandcircumstancesoflocalgroups.

Aim

Tosupportparticipantsinthedevelopmentoftheirknowledge,skillsandunderstandingrequiredtointroducetelecareintoindividualisedcarepackages.

Objectives

◾ tolearnhowtelecarecancontributetothesupportofpeoplewithalearningdisabilityandtheircarers

◾ 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

Thiscouldbea‘teaching’sessionwithapresentationandhandoutbasedonthedefinitionsprovidedintheintroductiontothisbook.

Keylearningpointsare:

◾ themeaningoftermssuchastelecare,telehealth,telehealthcareandanintroductiontothe‘generations’oftelecare

◾ thelackofcommonlyacceptedstandarddefinitions,andtheextenttowhichtermsareinterchangeable,andchanging

◾ thespeedwithwhichtechnologyisdevelopinginallareasofourlives◾ theeffectofthisonserviceuserandcarerexpectations

Inthissessionitwillalsobeimportanttoremindparticipantsaboutthenatureandimpactofdifferentsortsoflearningdisability,andsobegintoexplorethewaysinwhichtechnologycansupportpeoplewithdifferentconditions.Assumingthatparticipantswillalreadybeworkinginthefieldoflearningdis-ability,thekeylearningpointswillinclude:

◾ beingawarethatthesuccessfulintroductionoftelecaredependsonunderstandingtheindividualnatureofalearningdisability

◾ beingabletodevelopandusespecialistcommunicationsskillsifthelearningdisabilityhasaffectedspeechaswellascomprehension

◾ takingaperson-centredapproachtocareandsupportandencouraginghigherexpectationsamongthefamilyandcarersofpeoplewithlearningdisabilities.Thisincludesdevelopingaproactiveapproachwhichengagesthepersoninmeaningfulandenjoyableactivities

◾ beingopentonewandchangingwaysofprovidingsupport

Gathertogetheranythoughtsandinitialreactionsatthisstagewithoutlookingforconclusiveideas.Someofthedefinitionsmaybenewtoparticipants,andtimeisavailabletoaskquestionsaboutthesethroughouttheday.Reassureparticipantsthattheywillhavetheopportunitytoapplythesetopracticelater.

10.15 How can telecare help support people with a disability?

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

Localprovidersandsuppliersmayoffertoputonadisplayofequipment,atnocharge.Ifthereisalocal‘smarthouse’itmaybepossibletoholdthetrainingsessionthere–ortoorganiseavisitattheendofthedayorduringthelunchbreak.

Askthegrouptolookattheillustrationsofequipmentandsharetheirideasabouteachitem’susesandlimitations.Participantsmayhaveadditionalvalidsuggestionsaboutusesandlimitationsbasedontheirownexperiences.Askthegrouptosplitintopairsandthinkaboutapersontheyknowwhomaybenefitfromsomeoftheseadaptationsorinterventions,alongwithsomeonewhowouldbeunlikelytobenefitfromthem.

10.45 Break

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11.00 Case studies – telecare in practice

Inthissession,participantswilllookatavarietyofdifferentscenariosinpairsandthinkaboutwhatequipmentwouldbeuseful.Itisalsoimportantthattheythinkthroughtheimplications–forexample:

◾ whatistheneedthatistobemet(theimportanceofcarefulassessment;avoidingsimplisticsolutions;not‘justgivingoutbitsofkit’)

◾ thedifferentperspectivesoftheserviceuser,theirfamilyandsupportstaff

◾ differingattitudestorisk◾ howtelecarecansupplementotherkindsofsupport

butisnotintendedtoreplacethem◾ theimportanceofmaximisinglevelsof

independenceandretainingpersonalskills◾ promotingproactiveself-managementoflong-

termhealthconditionsorlearningdisabilities◾ encouraging/enablingindividualstoremainintheirown

homes/communitiesforaslongasissafelypossible◾ reducingunnecessarymovementtoalternativeformsof

accommodation,suchasnursinghomes,carehomesandhospitals◾ fosteringafeelingofsecurityforindividualsandtheirfamilies◾ improvingqualityoflife◾ providinggreaterchoice

Ideally,participantswillsharetheirownexperienceand‘cases’withcolleagues.Thisbookalsocontainssomecasestudieswhichcanbeusedasanalterna-tive,orinconjunctionwithparticipants’ownexperience.Thetrainerwillneedtodecidehowbesttousesomeorallofthese–perhapsgivingtheinitialscenariofirst,thencomparingthesolutionsuggestedinthebookwiththegroup-members’ownideas.

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?

35

13.00 Lunch

14.00 Telecare may be the solution … but is it ‘right’?

Thisisanopportunitytodiscusswithparticipantstherightsandwrongsofusingtelecare,lookedatfromtheirownperspective,aswellastheiremployer’sandprofessionalperspectives.Chapters2(Assessment)and3(Principles,rightsandethics)mayprovidethebasisforashortintroductorytalk.Alternatively,thiscouldbeaninteractivesessioninwhichthefollowingkindsofquestionsareposed:

◾ telecarecaninvolvethemonitoringofpeople’sprivatelives.Isthat‘right’?◾ someequipmentrestrictspeople’sfreedomtodoastheywantor

gowheretheywantinorderto‘protect’them.Whatistherightbalancebetweenriskandprotectionandhowdoweachieveit?

◾ telecarecanbeusedtosupporta‘normal’lifestyle–gettingupinthemorning,goingoutduringthedayandgoingtobedatnight.Istelecarebeingusedto‘impose’aconventionallifestyle?

Stressthatpeoplewithalearningdisabilityshouldonlyhavetheirmovementrestrictedormonitoredwithpermission,andwherethiscomplieswiththelawandcareregulations.Discusswhatpermissionmeanswherethereissig-nificantcognitiveimpairmentandtalkthroughwhatthelawdictatesinthisarea.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.Howdoestheuseoftelecarefitwithlocaljointstrategiesforpeoplewithlearningdisabilities?Iftimeisavailable,itwillbeusefultolookatthenationalstrategytooanddiscusshowtelecarecancontributetonationalpolicygoalssuchasShiftingtheBalanceofCare.(ResourcesareavailableontheNationalTelecareDevelopmentPro-grammewebsite−www.jitscotland.org.uk/action-areas/telecare-in-scotland/)

Alternative

Iftheprogrammeisforparticipantsfromdifferentagenciesandlocalities,orinqualifyingcollege-basedprogrammes,thefollowingalternativetrainingsession,basedonthe‘model’procedure(seepage27),canbeused.

36

15.00 Introducing telecare successfully – a four-stage approach

Onpages27–29ofthisbookafour-stageapproachisoutlinedforintroducingtelecaretosomeonewithalearningdisability.Thisisfollowedbyacasestudythatfollowsthefour-stagemodel.AskthegrouptodiscusstheprocedureandhowitworkedforDavid.Drawoutsomeofthefollowingpoints:

◾ whatwastheoutcomeforDavid?Doesthegroupthinkthatanyotherenvironmentalorstaffingoptionscouldhavebeenusedinadditiontootherformsoftelecare?

◾ howcouldthepeoplecaringforDavidbeconfidentthateachinterventionworkedandrepresentedtherightdecision?Atthisstageyoushouldemphasisetheimportanceofthereviewprocess,andofeveryoneinvolvedinassessinganindividualunderstandinghowitworks

◾ whatistheirviewoftheconsentandethicalissuesencountered?

Discusstheadvantagesanddisadvantagesoftheprocedurefromdifferentperspectives.Talkaboutwhetheritisappropriatetoreplaceface-to-facestaffcontact(eitherduringthedayoratnight)withatelecaresolution.Emphasisetheimportanceofsocialcontactandthepotentialdangerofincreasedisola-tionifstaffprovidelessface-to-facesupport.Althoughfewerovernightchecksareneededifaseizuremonitorisused,thisdoesnotnecessarilymeanthatwakingnightstaffarenolongerneeded.WillDavid’shealthneedschangeashegetsolder?Ifso,how?

16.15 Conclusions and evaluation

Askthegroupifthediscussionstheyhavehadduringtheafternoonhaveinflu-encedthewaytheywouldnowapproachthecasestudiesintroducedearlierintheday.Dotheynowfeelmoreconfidentaboutmakingarecommendationandsupportingapersonwithalearningdisabilitytomakeaninformedchoiceabouttelecare?

Summariseandaskwhattheparticipantswilltakeawayfromtheday.Thediscussioncouldincludeareasofnewtechnologyandthepotentialforthefutureuseoftelecareandtelehealthasawayofsupportingpeoplewithalearningdisability.

37

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.Formoreinformationaboutwhattheycall‘personalisedtechnology’emailpersonalisedtechnology@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

SocialCareInstituteforExcellence–DementiaGateway.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

Telecare–supportingScotland:adifferentapproach.DVDwhichincludesseven‘digitalstories’illustrating,inthewordsofusersandcarers,theimpactoftelecare.Availablethroughhttp://www.jitscotland.org.uk/action-areas/telecare-in-scotland/

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

38

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)53–57

Aspinall,Ann(2007)Howcanassistivetechnologyandtelecaresupporttheindependenceandemploymentprospectsforadultswithlearningdisabilities,Journal of assistive technology1(2)43–48

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)227–243.ThispaperreviewsthepositiveevaluationofWestLothian’stelecareprogrammeinrelationtoprovisionoftelecareathomeforpeoplewithdementia.

Doughty,Kevin(2008)Lifestylemonitoring:extendingtelecareservicesintopredictionandprevention,Journal of assistive technology2(1)35–41

Doughty,Kevin(2008)Accessingpropertiesforthedeliveryoftelecareservicesinanemergency,Journal of assistive technology2(2)43–47

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)42–44

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 2008–2010, 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)42–47

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

*Allwebsitesaccessed24.02.10

39

Supplier contact details

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

BILD 29CampionHouseGreenStreetKidderminsterDY101JLTel:01562723010www.bild.org.uk

BuddiLtd 2153OvingtonStreetLondonSW32JATel:08714238756www.buddi.co.uk

5 10 12 15ChubbCommunityCareShadsworthRoadBlackburnBB12PRTel:01254688774www.chubbcommunitycare.co.uk

HallidayJamesLtd 19 20EzekielHouseEzekielLaneWillenhallWV125QUTel:01216616806www.hallidayjames.com

PivotellLtd 14 25POBox108SaffronWaldenCB114WXTel:01799550979www.pivotell.co.uk

SensoriumLtd 22 249NethertownBroadStreetDunfermlineKY127DSTel:01383720600www.sensorium.co.uk

RSLSteeperLtd 26Unit6,HunsletTradingEstateSevernRoadLeedsLS101BLTel:01132070432www.rslsteeper.com

TynetecLtd 2 7 8CowleyRoadBlythRiversideBusinessParkBlythNE245TFTel:01670352371www.tynetec.co.uk

TunstallHealthcare(UK)Ltd 1 3 4 6 9 11 13 16 17 18 23 27 28 30WhitleyLodgeWhitleyBridgeDN140HRTel:01977661234www.tunstallhealth.com

40

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DesignedandproducedbythePublishingBureau(www.publishingbureau.co.uk)

DementiaServicesDevelopmentCentreIrisMurdochBuildingUniversityofStirlingStirlingFK94LA

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

JointImprovementTeamArea3ER,StAndrew’sHouseRegentRoadEdinburghEH13DG

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

TheUniversityofStirlingisacharityregisteredinScotland,numberSC011159.

Telecare and learning disabilityUsing telecare effectively in the support of people with learning disabilities