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Valu
ing
Peop
le No
w: A
New
Three-Year Strateg
y for p
eop
le with
learnin
g d
isabilities
© Crown copyright 2009
290565a 1p 2k January 09 (CWP)
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Valuing People Now: a new three-year strategy for people with learning disabilities ‘Making it happen for everyone’
DH INFORMATION READER BOX
Policy HR/Workforce Management Planning Clinical
Estates Commissioning IM&T Finance PartnershipWorking
Document purpose Policy
Gateway reference 10531
Title ValuingPeopleNow:anew three-yearstrategyforlearning disabilities
Author DepartmentofHealth
Publication date 19January2009
Target audience PCTCEs,NHSTrustCEs,SHACEs, CareTrustCEs,FoundationTrust CEs,LocalAuthorityCEs,Directors ofAdultSSs
Circulation list MedicalDirectors,Directorsof PH,DirectorsofNursing,NHS TrustBoardChairs,Directors ofHR,DirectorsofFinance, AlliedHealthProfessionals, GPs,DirectorsofChildren’sSSs, VoluntaryOrganisations/NDPBs
Description ValuingPeopleNowsetsout theGovernment’sstrategyfor peoplewithlearningdisabilities forthenextthreeyearsfollowing consultation.Italsoresponds tothemainrecommendations inHealthcareforAll,the IndependentInquiryintoaccess tohealthcareforpeoplewith learningdisabilities
Cross reference ValuingPeople(2001);Valuing PeopleNow:TheDeliveryPlan: Makingithappenforeveryone (2009);Summaryofresponses totheconsultationonValuing PeopleNow:Fromprogressto transformation(2009)
Superseded documents ValuingPeopleNow:From ProgresstoTransformation(2007)
Action required N/A
Timing N/A
Contact details SocialCarePolicyandInnovation DepartmentofHealth Room116WellingtonHouse 133-155WaterlooRoad email:[email protected] www.Dh.gov.uk/en/Policyand guidance/Socialcare/ Deliveringadultsocialcare/ Learningdisabilities/index.htm
For recipient use
Valuing People Now: a new three-year strategy for people with learning disabilities Making it happen for everyone
DH INforMatIoN reaDer BoX
Policy HR/Workforce Management Planning Clinical
Estates Commissioning IM&T Finance PartnershipWorking
Document purpose Policy
Gateway reference 10531
title ValuingPeopleNow:anew three-yearstrategyforlearning disabilities
author DepartmentofHealth
Publication date 19January2009
target audience PCTCEs,NHSTrustCEs,SHACEs, CareTrustCEs,FoundationTrust CEs,LocalAuthorityCEs,Directors ofAdultSSs
Circulation list MedicalDirectors,Directorsof PH,DirectorsofNursing,NHS TrustBoardChairs,Directors ofHR,DirectorsofFinance, AlliedHealthProfessionals, GPs,DirectorsofChildren’sSSs, VoluntaryOrganisations/NDPBs
Description ValuingPeopleNowsetsout theGovernment’sstrategyfor peoplewithlearningdisabilities forthenextthreeyearsfollowing consultation.Italsoresponds tothemainrecommendations inHealthcareforAll,the IndependentInquiryintoaccess tohealthcareforpeoplewith learningdisabilities
Cross reference ValuingPeople(2001);Valuing PeopleNow:TheDeliveryPlan: Makingithappenforeveryone (2009);Summaryofresponses totheconsultationonValuing PeopleNow:Fromprogressto transformation(2009)
Superseded documents ValuingPeopleNow:From ProgresstoTransformation(2007)
action required N/A
timing N/A
Contact details SocialCarePolicyandInnovation DepartmentofHealth Room116WellingtonHouse 133-155WaterlooRoad email:[email protected] www.Dh.gov.uk/en/Policyand guidance/Socialcare/ Deliveringadultsocialcare/ Learningdisabilities/index.htm
for recipient use
iii
Contents�
Introduction by anne Williams, National Director for Learning Disabilities 1�
executive summary� 5�
Introduction� 19�• Background–existingpolicy 20 • Whyanewstrategy? 20 • Thefourguidingprinciples 26 • Ahumanrightsapproach 26
Chapter 1: Including everyone 29�• ValuingALLpeople 30
– Peoplewithmorecomplexneeds 30 – Peoplefromblackandminorityethnicgroupsand
newlyarrivedcommunities 36 – Peoplewithautisticspectrumconditions 37 – Learningdisabledoffendersincustodyandthecommunity 38
• Childrenwithlearningdisabilities 39 • Familycarersandfamilies 40
Chapter 2: Personalisation – starting with the individual and their family 45�
iV ConTenTs
53 Chapter 3: Having a life • Betterhealth 54
– Primaryandacutehealthcare 57 – Healthcareforall–theindependentinquiryintoaccessto
healthcareforpeoplewithlearningdisabilities 58 – specialistandmentalhealthservices 70 – offenderhealth 71
• Ahomeofyourown 74 • Work,educationandgettingalife 79
– Transition 80 – Post-16education 81 – employment 82
• Relationshipsandhavingafamily 88 • Parentswithalearningdisability 90
Chapter 4: People as citizens� 95�• Advocacy 96 • Transport 99 • Accesstoleisureservicesandrecreationalactivities 101 • Beingsafeinthecommunityandathome 104
– Hatecrime 104 – safeguarding 106
• Accesstojusticeandredress 107
Chapter 5: Making it happen� 109�• Leadershipanddeliverystructures 110 • Partnershipboards 112 • BetterCommissioning 114 • Developingtheworkforce 118 • Measuringperformanceanddatacollection 122 • TheDeliveryPlan 127 • Keypolicyobjectivesfor2009-12 128
abbreviations and glossary� 132�
1
Introduction by anne Williams, National Director for Learning Disabilities
2 inTRoDuCTionByAnneWiLLiAMs,nATionALDiReCToRFoRLeARningDisABiLiTies
iwasdelightedtobeappointedasthenewnationalDirectorfor LearningDisabilities,notjustbecauseihavelongbeenpassionate aboutimprovingthelifechancesofpeoplewithlearningdisabilities, butalsobecausetheworktorefreshtheValuingPeoplestrategyisan opportunitytoreallymaketransformationhappen.Mypredecessor asnationalDirectordidatremendousamounttoraise,withincentral government,awarenessoftheneedsandwishesofpeoplewithlearning disabilities,theirfamiliesandcarers.Myaimistobuildonwhathe achievedandleadthedeliveryofthisnewstrategy.
itisreallyexcitingthatover10,000peoplewereinvolvedinresponding totheconsultationonValuing People Nowandthattherewassupport fortheguidingprinciplesunderpinningthestrategyandendorsementof thepolicyobjectives.
Aboveall,however,themessagefromindividualswithlearning disabilitiesandfamilycarersisthattheywanttoseearealdifference intherange,qualityandchoiceofsupportandcareservicesavailable ineverylocalarea.Theywantustoensurethateveryonebenefitsfrom theimplementationofValuing People Now,includingpeoplewith morecomplexneeds,thosefromminorityethniccommunities,people ontheautisticspectrumandindividualswhohaveoffended.Theyalso wantustorecognisetheimportanceandexpertiseoffamilycarers.our taskthereforeistomakethestrategyhappen,andmakeithappenfor everyone,everywhere.
Thiswillrequirethefullinvolvementofindividualswithlearning disabilitiesandfamilycarers.itwillrequireleadershipnationallyacross government,regionallyandespeciallyfromcouncils,directorsofadult socialservicesandchiefexecutivesofprimarycaretrusts(PCTs)whoare wellplacedtoensurethatchangehappenslocally.Thevoluntaryand privatesectorsalsohaveanimportantparttoplayinreshapingsupport andservices.
Mykeytask,withtheCo-Director,andworkingwithmynewteam, governmentofficials,thedeputydirectorsofsocialcareandValuing Peopleleadsintheregions,istosupportlocalimplementation.
iseepartnershipboardsasbeingcentraltothestrategicplanning, commissioning,deliveryandperformancemanagementofallservicesas theyrelatetolearningdisabilityineverylocalarea.Wellsupportedby directorsofadultsocialservices,leadmembers,PCTchiefexecutivesand
3 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
theirnon-executivedirectors,partnershipboardsneedtobeempowered toleadtheimplementationofValuing People Now.
TheDeliveryPlanpublishedalongsidethisstrategysetsoutrolesand responsibilities,actionsandmilestones.Furtherbestpracticeguidance andself-assessmenttoolsforpartnershipboardswillfollow.
Mymeasuresofsuccessattheendofthreeyearswillbeif:
• theimplementationofValuing People Nowsecuresimprovements inthelivesofallpeoplewithlearningdisabilities;
• allindividualshavepersonalised,high-qualitysupportandcareplans;
• healthcareincommunities,inhospitalsandinspecialistservices improves;
• morepeopleliveintheirownhomes;
• morepeoplehavejobs;
• morepeopleareabletoliveintheirlocality;
• theneedsofpeoplewiththemostcomplexneedsaremetincreative andpersonalisedways.
ilookforwardtothechallengeofmakingithappenandtoworking withyouall.
AnneWilliams
4 inTRoDuCTionByAnneWiLLiAMs,nATionALDiReCToRFoRLeARningDisABiLiTies
5
executive summary�
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1� Valuing People Now: A new three-year strategy for people with learning disabilitiessetsoutthecross-governmentstrategyforthenextthree years.indoingso,ittakesaccountoftheresponsestotheconsultation, whichendedinMarch2008.inparticular,thisstrategy:
• addresseswhatpeoplehavetoldusaboutthesupportpeoplewith learningdisabilitiesandtheirfamiliesneed;
• reflectsthechangingprioritiesacrossgovernmentwhichimpact directlyonpeoplewithlearningdisabilities;
• setsoutthegovernment’sresponsetothetenmain recommendationsin Healthcare for All,1thereportofthe independentinquiryintoaccesstohealthcareforpeoplewith learningdisabilities,chairedbysirJonathanMichael;and
• providesafurtherresponsetotheJointCommitteeonHumanRights report,A Life Like Any Other?2
the vision
2� ThevisionremainsassetoutinValuing People3in2001:thatallpeople withalearningdisabilityarepeoplefirstwiththerighttoleadtheirlives likeanyothers,withthesameopportunitiesandresponsibilities,andto betreatedwiththesamedignityandrespect.Theyandtheirfamilies andcarersareentitledtothesameaspirationsandlifechancesasother citizens.Thisvisionsitsfirmlywithinthecontextof:
• thetransformationofsocialcareandthepersonalisationagendaset outinPutting People First;4
• theindependentLivingstrategy5–across-governmentstrategyforall disabledpeople;and
• theCarersstrategy,Carers at the heart of 21st-century families and communities.6
• Aiming High for Disabled Children: transforming services for disabled children and their families.7
• The Children’s Plan: building brighter futures(2007).8
1 Healthcare for All,ReportoftheindependentinquiryintoAccesstoHealthcareforPeoplewithLearning Disabilities,sirJonathanMichael,DepartmentofHealth(2008)
2 A Life Like Any Other? Human Rights of Adults with Learning Disabilities(2008HLPaper40-1HC73-1)House ofLords,HouseofCommons,JointCommitteeonHumanRights(2008)
3 Valuing People: A New Strategy for Learning Disability for the 21st Century(Cm5086)DepartmentofHealth (2001)
4 Putting People First:A shared vision and commitment to the transformation of Adult Social Care,Departmentof Health(2007)
5 Independent Living Strategy,officeforDisabilityissues(2008) 6 Carers at the heart of 21st-century families and communities,DepartmentofHealth(2008) 7 Aiming High for Disabled Children: Better Support for Families, HMTreasury/Departmentforeducation
andskills(2007) 8 The Children’s Plan: building brighter futures.DCsFCM7280(2007).
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Delivering the vision
Thekeyfocusofthisstrategyistomakethatvisionareality.each chapter,therefore,setsoutkeycross-governmentcommitmentsand actionstosettheenvironmenttoenablechangetohappen,and summariseslocalandregionalactions,basedongoodpracticetogrow capacityandcapabilityforlocaldelivery.Thekeypartnerswhowillall playacrucialroleinthedeliveryofValuing People Nowaresetout below:
KeypartnersindeliveryofValuing People Now
• Government departments:theDepartmentsofHealth(DH), Children,schoolsandFamilies(DCsF),Homeoffice,Communities andLocalgovernment(CLg),Transport(DfT),WorkandPensions (DWP),innovation,universitiesandskills(Dius),MinistryofJustice (MoJ),andCabinetoffice(officeoftheThirdsector(oTs)).
• the National Directors for Learning Disabilities: appointedby thesecretaryofstateforHealthtoleadonthedeliveryofValuing People Nowforthenextthreeyears.oneisapersonwithalearning disability.
• the office of the National Director:supportsthetwonational Directorsandprovidesexpertiseacrossarangeofsubjectareasviaa teamofnationalleads.
• the Valuing People team:leadsandsupportsthedeliveryof Valuing People Nowatalocalandregionallevel.
• Government offices of the regions: willleadondeliveryacross governmentinthenineregions.
• Deputy regional Directors for Social Care and Partnerships:will leadonsocialcaredeliveryinthenineregions.
• Strategic health authorities (SHas):willsetthestrategicdirection andperformancemanageprimarycaretrusts(PCTs).
• Directors of adult Social Services:haveleadresponsibilityfor commissioningtheprovisionofsocialcareservicesforpeoplewith learningdisabilities.
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• Directors of Children Services: haveresponsibilitytolinkwithadult servicesinthetransitionofyoungpeoplewithlearningdisabilities.
• Chief executives of PCts: havetheleadresponsibilityfor commissioninghealthcareservicesforpeoplewithlearning disabilities.
• Learning Disability Partnership Boards:the150partnership boardsbringtogetherlocalpartnersincludingpeoplewithlearning disabilitiesandtheirfamilies.
• National forum for People with Learning Difficulties: brings togetherrepresentativesfromnineregionalforumsforpeoplewith learningdisabilitiestoinformgovernmenthowValuingPeopleis workingforpeople.
• National Valuing families forum:bringstogetherrepresentatives fromnineregionalfamilycarers’networkstoinformgovernment howValuingPeopleisworkingforcarers.
• third sector providers:charitableandvoluntaryorganisations whichprovideservicesforpeoplewithlearningdisabilities,including advocacyandpeersupport.
• Independent providers:organisationsintheprivateand independentsectorwhichprovideservicesforpeoplewithlearning disabilities.
• Care Quality Commission (CQC):willregulateorganisationsthat providehealthandsocialcareservices.
4� Thereisawell-establishedbodyoflegislationandpolicythatalready appliestoserviceprovidersinrelationtopeoplewithlearningdisabilities andtheirfamilies,inparticulartheDisabilityDiscriminationAct(2005) andtheHumanRightsAct(1998).Thisstrategydoesnotplacemany newburdensonservicesorfrontlinestaff;ratheritisaboutemphasising whatbestpracticelookslikeandidentifyingthekeyleverstoenablethis bestpracticetobecomeuniversal.
the key messages
5� Thisstrategyiswrittenfromahumanrightsbasedapproach,onthe fundamentalprinciplethatpeoplewithlearningdisabilitieshavethe samehumanrightsaseveryoneelse,andsetsoutfurtherstepsforthis
9 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
tohappen.itrespondstotheconcernssetoutintheJointCommittee onHumanRightsreportA Life Like Any Other?thatadultswithlearning disabilitiesareparticularlyvulnerabletobreachesoftheirhumanrights.
Chapter 1: Including everyone
6� Thestrategyhasbeenstrengthenedtoensurethatitisinclusiveofthose groupswhoareleastoftenheardandmostoftenexcluded.Thisreflects concernsexpressedbyrespondentstotheconsultationon Valuing People Nowthatserviceproviders,commissionersandpolicymakers werenotspecificallyaddressingtheneedsofthesegroups,including:
• peoplewithmorecomplexneeds;
• peoplefromblackandminorityethnicgroupsandnewlyarrived communities;
• peoplewithautisticspectrumconditions;and
• offendersincustodyandinthecommunity.
7� DHwilltakeforwardprogrammesofworkaroundethnicityandcomplex needsandwithfamilies.Thesewillbeunderpinnedbyregionalandlocal actiontosupportpartnershipworking,particularlythroughLearning DisabilityPartnershipBoards.Wehaveworkedcloselywithfamilycarer groupstoensurethatthisstrategyreflectstheconcernstheyraised duringtheconsultation–thattheybeseenasexpertpartnersinthecare oftheirlovedonesandthattheparticularneedsofpeoplewithmore complexconditionsaremet.
Chapter 2: Personalisation
8� Personcentredplanning,advocacyanddirectpaymentstogivepeople morechoiceandcontrolintheirliveswereattheheartoftheoriginal Valuing People.inDecember2007,thecross-sectorconcordatPutting People First setoutavisionfortransformingsocialcare.Atitsheart isthecommitmenttogivingpeoplemoreindependence,choiceand controlthroughhigh-qualityandpersonalisedservices.Putting People Firstisaboutempoweringpeopletoshapetheirownlivesandthe supporttheyreceivebyallowingthemtouseresourcesmoreflexiblyto suittheirneedsandlifestyle.
9� Deliveryofthisvisionwilldependuponcentralandlocalgovernment workingtogetherwithpartnersacrossthesector.Putting People First
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recognisesthatservicesacrosstransport,leisure,education,health, housing,communitysafetyandthecriminaljusticesystemandaccessto informationandadvicearevitaltoensuringpeople’sindependenceand overallqualityoflife.
10� Forpeoplewithlearningdisabilitiesandtheirfamilies,transformation shouldmeanusingpersoncentredapproaches(suchaspersoncentred planningandsupportplanning)andimprovedoutcomesintermsof socialinclusion,empowermentandequality.Morepeoplewithlearning disabilitiesshouldbeabletocommissiontheirownservicestolive independentlyandhaverealchoiceaboutthewaytheylivetheirlives. Thegovernmentwilltakeactiontoensurethatthistransformation programmeincludestheneedsofpeoplewithlearningdisabilitiesand theircarers.
Chapter 3: Having a life
Health
11� Betterhealthforpeoplewithlearningdisabilitiesisakeypriority.There isclearevidencethatmostpeoplewithlearningdisabilitieshavepoorer healththantherestofthepopulationandaremorelikelytodieata youngerage.TheiraccesstothenHsisoftenpoorandcharacterised byproblemsthatunderminepersonalisation,dignityandsafety.The finalreportofthenHsnextstageReview9setsoutthevisionfor thenHsthatitwill‘deliverhighqualitycareforallusersofservices inallaspects’.KeyissuesforthenHsaretoachievefullinclusionof peoplewithlearningdisabilitiesinmainstreamworktoreducehealth inequalitiesandtoensurehigh-qualityspecialisthealthserviceswhere theseareneeded.
12� Thereportoftheindependentinquiryintoaccesstohealthcarefor peoplewithlearningdisabilities,Healthcare for All,waspublishedin July2008andmade10keyrecommendationsforimprovement.This strategysetsoutaprogrammeofworktoaddressHealthcare for All recommendations.
13� Peoplewithlearningdisabilitiesareentitledtobetreatedwiththesame dignityandrespectasanyothermemberofthecommunity.neglector abuseofdisabledpeopleisabsolutelyunacceptableandthegovernment
9 High Quality Care for All: NHS Next Stage Review Final Report(CM7432),DepartmentofHealth(2008)
11 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
isdeterminedthatlessonsarelearntandthatactionistakentoimprove healthcareforpeoplewithlearningdisabilities.
Housing
14� Thisstrategybuildsonexistingprogrammesincludingsupporting People10toincreasethehousingoptionsavailabletopeoplewith learningdisabilities.Manypeoplewithlearningdisabilitiesdonotchoose wheretheyliveorwithwhom.Morethanhalflivewiththeirfamilies, andmostoftheremainderliveinresidentialcare.Thegovernmentwill deliveraprogrammeofworktoensurethatmainstreamhousingpolicies areinclusiveofpeoplewithlearningdisabilities.
Work,educationandgettingalife
15� Peoplewithlearningdisabilitieswanttoleadordinarylivesanddothe thingsthatmostpeopletakeforgranted.Theywanttostudyatcollege, getajob,haverelationshipsandfriendshipsandenjoyleisureandsocial activities.
16� underAiming High for Disabled Children,theTransitionsupport Programmewillworktosupportlocalareastoimprovetransition arrangementsacrosschildren’shealthandsocialcare,including consolidatingpersoncentredapproachesforpeoplewithlearning disabilities.Adultserviceshaveanimportantroleasequalpartnersin transition.Thisworkwilladdresstheconcernsoffamiliesandyoung peoplethatthetransitionfromchildhoodtoadulthoodisdifficultand theyfeelexcludedfromdecisions.
17� Across-governmentemploymentstrategywillbepublishedin spring2009,whichincludesasignificantexpansionofemployment opportunitiesforpeoplewithlearningdisabilities.Thiswillbelinked tothePublicserviceAgreement(PsA)16deliveryplanonincreasing thenumberofadultswithlearningdisabilitiesinemployment.The cross-governmentWork,educationandLifegroupwillalsolead implementationof‘Progression through Partnership’11(thepost-16 educationstrategy)andthegettingaLifeproject,whichaimstoachieve anintegratedassessmentanddecision-makingprocessthatwillallow
10 ThesupportingPeopleprogrammefundslocalauthoritiestoprovideserviceswhichhelpvulnerableand olderpeopletoliveindependently.seeIndependence and Opportunity: Our Strategy for Supporting People. DepartmentforCommunitiesandLocalgovernment.June2007.www.communities.gov.uk/publications/housing
11 ‘Progression through Partnership’: A Joint Strategy between the DfES, DH and DWP on the role of Further Education and Training in Supporting People with Learning Difficulties and/orDisabilitiesto Achieve Fulfilling Lives,Thestationeryoffice(2007)
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peopletousepublicresourcesflexiblytogettheoutcomestheywant, includingaccesstoemploymentopportunities.
Relationshipsandhavingafamily
18� Thisstrategyemphasisestheimportanceofenablingpeoplewith learningdisabilitiestomeetnewpeople,formallkindsofrelationships, andtoleadafulfillinglifewithaccesstoadiverserangeofsocialand leisureactivities.italsoemphasisestheirrighttobecomeparentsandthe needforadequatesupporttosustainthefamilyunit.Thereisevidence thatpeoplewithlearningdisabilitieshavelimitedopportunitiestobuild andmaintainsocialnetworksandfriendships.Parentswithalearning disabilitydonotgetsufficientaccesstosupport,puttingfamiliesat riskofenforcedseparation.However,surestartChildren’sCentres worktogetherwithotherprofessionalstohelpparentswithlearning disabilitiesandtheirchildrenreceivetherightemotionalandpractical supporttomeettheassessedneedsofthechildandfamily.
Chapter 4: People as citizens
Advocacy
19� Putting People Firstrecognisestheimportanceofensuringtherightlevel ofsupport,informationandadviceandadvocacyisavailabletopeople, includingthosewithlearningdisabilities.
20� TheValuingPeoplenationaladvocacyfundwillfocusonsupporting advocacytoachieveagreaterimpact.Theprogrammeincludes:
• aqualitytoolforself-advocacygroups;
• worktobettersupportadvocacyforpeoplefromblackandminority ethniccommunitiesandpeoplewithcomplexneeds;and
• strengtheningleadershipsupportforpeoplewithlearningdisabilities.
Transport
21� DfTandDHwillensurenationalprogrammesoninclusivetransport includepeoplewithlearningdisabilities.Weknowthatpeoplewith learningdisabilitiesarelesslikelytomakejourneysthannon-disabled peoplebecauseoftransportdifficulties.
13 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
Leisureservicesandsocialactivities
22� DHwillworkwiththeDepartmentforMedia,Cultureandsportto explorehowlocalservicescanbemademoreaccessibleforpeoplewith learningdisabilities.Thisistoaddressconcernsthatpeoplewithlearning disabilitiesareoftennotconnectedtotheircommunitiesorgiven meaningfulvocational,social,leisureorlearningactivities.
Beingsafeinthecommunityandathome
23� TheHomeofficewillworkwithDH,theMinistryofJustice(MoJ) andrelatedcrimeanddisorderagenciesandthirdsectorpartnersto supportthedevelopmentandimplementationoftheDisabilityHate Crimestrategy,makingsurethespecificissuesforpeoplewithlearning disabilitiesareaddressed.Thisrecognisesthatthelivesofpeoplewith learningdisabilitiesarestillconstrainedbyexperienceofabuseand neglect.Manypeopledonotfeelsafeintheirlocalcommunitiesand havebeenvictimsofhatecrime.
24� DHwillpublishrevisedNo Secretsguidanceonsafeguardingvulnerable adultsfollowingconsultation,12includingconsultationwithpeoplewith learningdisabilities.
Accesstojusticeandredress
25� TheCrownProsecutionserviceisdevelopinganewpolicyonprosecuting crimeswherepeoplewithlearningdisabilitiesarevictimsorwitnesses. ValuingPeopleregionalleadswillsupportpartnershipboardstoengage withlocalcrimeanddisorderpartnershipstohelppeoplewithlearning disabilitiesandtheirfamiliesunderstandtheirrightsandhowtocomplain. Thiswillhelpaddressconcernsthatpeoplewithlearningdisabilities arelesslikelytoreportacrimeortakepartinthecriminalprocessasa witness,becausetheymaylacktheconfidenceorsupporttospeakout andfindprocessescomplex.Theymayalsohavelowexpectations.Where youngpeoplewithlearningdisabilitiesareincustody,theyouthCrime ActionPlanprovidesforimprovededucationandtraining.13
12 Safeguarding Adults: A Consultation on the Review of the ‘No Secrets’ Guidance: www.dh.gov.uk/en/Consultations/Liveconsultations/DH_089098
13 The Youth Crime Action Plan(2008)availableatwww.homeoffice.gov.uk/documents/youth-crime-action-plan/
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Chapter 5: Making it happen
26� Thedeliveryofthisstrategyneedstoberootedwithinthemechanisms andprocessesestablishedtodeliverthewiderhealthandsocial caretransformationalagenda–inparticular,Jointstrategicneeds Assessments,LocalstrategicPartnerships,LocalAreaAgreementsand partnershipboards.
27� ThenationalDirectorswillleadthedeliveryprogrammeforValuing People Now.Thegovernmentwillcontinuetosupportandstrengthen thenationalmechanismstodrivedelivery,including:
• thenationalForumofPeoplewithLearningDifficulties;
• thenationalValuingFamiliesForum;and
• anewnationalLearningDisabilityProgrammeBoard.
28� Akeyelementofdeliverywillbethedevelopmentofcapacityand capabilityatlocallevelstodesignandcommissionthesupportservices thatpeopleneedtoenablethemtoliveindependentlyandcloseto theirfamiliesandfriends.Localpartnershipwithpeoplewithlearning disabilitiesandtheirfamilieswillbecrucialtothis,andLearningDisability partnershipboardshaveavitalroletoplay.TheValuingPeopleteamwill developtoolstosupportlocalactiontodelivertransformationandsupport provisionofrobustdatasetstoinformlocalaction,andenablepartnership boardstobenchmarkprogress.ThenationalDirectorsandValuingPeople teamwilltargetsupportonthoseareaswhichareunderperformingand encouragegoodpartnershipboardstomentorpoorperformers.Directors ofadultsocialservices,PCTchiefexecutivesandlocalauthorityelected membershaveanimportantroletoplay.Thirdsectorandindependent sectorproviderswillbevitaltodeliveringthisvision.
29� Theresponsibilityforcommissioningandfundingsocialcareforpeoplewith learningdisabilitieswilltransferfromthenHstolocalgovernmentfrom April2009inlinewithguidanceissuedtolocalauthoritiesandPCTs.14
30� TheofficeofthenationalDirectorwillworkwithgovernment departmentstosupportthedevelopmentofstaffwhoworktodeliver supportforpeoplewithlearningdisabilitieswithinthecontextofthe nationalAdultsocialCareWorkforcestrategytobelaunchedin2009.
14 Valuing People Now: Transfer of the responsibility for the commissioning of social care for adults with a learning disability from the NHS to local government and transfer of the appropriate funding(2008): www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcolleagueletters/DH_087148
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31� Adetaileddeliveryplanisbeingpublishedalongsidethisstrategyandwe willproduceasummarypositionstatementsettingouthowtheexisting performanceframeworksrelatetoprovisionofservicesforpeoplewith learningdisabilitiesinspring2009.
Principles
32� ThenewstrategyreaffirmsthefourguidingprinciplessetoutinValuing Peoplewhichapplytobothindividualsandservices:
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Rights:
• Peoplewithlearningdisabilitiesandtheirfamilieshavethesame humanrightsaseveryoneelse.
Independent living:
• Thisdoesnotmeanlivingonyourownorhavingtodo everythingyourself.Alldisabledpeopleshouldhavegreater choiceandcontroloverthesupporttheyneedtogoabouttheir dailylives;greateraccesstohousing,education,employment, leisureandtransportopportunitiesandtoparticipationinfamily andcommunitylife.
Control:
• Thisisaboutbeinginvolvedinandincontrolofdecisionsmade aboutyourlife.Thisisnotusuallydoingexactlywhatyouwant, butisabouthavinginformationandsupporttounderstandthe differentoptionsandtheirimplicationsandconsequences,so peoplecanmakeinformeddecisionsabouttheirownlives.
Inclusion:
• Thismeansbeingabletoparticipateinalltheaspectsof community–towork,learn,getabout,meetpeople,bepartof socialnetworksandaccessgoodsandservices–andtohavethe supporttodoso.
Key policy objectives for 2009–12 33 Thestrategysetsoutkeypolicyobjectivesforthenextthreeyears:
Allpeoplewithlearningdisabilitiesandtheirfamilieswill:
1. benefitfromValuing People Now;
2. havegreaterchoiceandcontrolovertheirlivesandhavesupportto developpersoncentredplans;
3. getthehealthcaretheyneedandthesupporttheyneedtolive healthylives;
4. haveaninformedchoiceaboutwhere,andwithwhom,theylive;
17 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
5. haveafulfillinglifeoftheirown,beyondservices,thatincludes opportunitiestostudy,workandenjoyleisureandsocialactivities;
6. besupportedintopaidwork,includingthosewithmorecomplex needs;
7. havethechoicetohaverelationships,becomeparentsandcontinue tobeparents,andwillbesupportedtodoso;
8. betreatedasequalcitizensinsocietyandsupportedtoenacttheir rightsandfulfiltheirresponsibilities;
9. havetheopportunitytospeakupandbeheardaboutwhatthey wantfromtheirlives–thebigdecisionsandtheeverydaychoices. iftheyneedsupporttodothis,theyshouldbeabletogetit;
10. beabletousepublictransportsafelyandeasilyandfeelconfident aboutdoingso;and
11. beabletoleadtheirlivesinsafeenvironmentsandfeelconfident thattheirrighttoliveinsafetyisupheldbythecriminaljustice system.
Forservices:
1. Leadership,deliveryandpartnershipstructuresareputinplacethat willmakesuretheoutcomessetoutinthisstrategyaredelivered.
2. effectivecommissioninginawaythatbestsupportstheright outcomesforpeoplewithlearningdisabilitiesandtheirfamiliesis ensured.
3. Theworkforcesacrossservicesaregiventheappropriatesupport andtrainingtoequipthemwiththevalues,skillsandknowledgeto delivertheValuing People Nowprioritiesforallpeoplewithlearning disabilities.
4. Learningdisabilitieswillhaveaclearpositioninthenew performanceframeworksforthenHsandlocalauthorities,and therewillbeacomprehensiverangeofdatasetsandreporting mechanisms.
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1919
Introduction
20 inTRoDuCTion
Background – existing policy
1� Valuing People: A New Strategy for Learning Disability for the 21st Century15wasthefirstpolicythatsignalledanewapproachtothe deliveryofcare,andanewrelationshipbetweenthestateandthe citizen.itprovidedavisionforthelivesofpeoplewithlearning disabilitiesandtheirfamiliesbasedonthefourprinciplesofrights, independence,choiceandinclusion.itsoughtnewwaystogivepeople andfamiliesavoice,tobeatthecentreoftheirownplans,andtohave somecontroloverhowresourceswerespentonthemthroughDirect Payments.Thisapproachwasextendedthroughthe inControl16pilots. Valuing Peoplehasacurrencybeyondenglandandhassetthestandard forothercountries.
2� Thiswastakenfurtherinthecross-governmentconcordat,Putting People First(2007)whichsetoutplansfor‘collaborationbetween centralandlocalgovernment,professionalleadership,providersandthe regulatorindevelopingafutureforsocialcareservicesthatsupports peopletoliveindependently,stayhealthyandhavethebestpossible qualityoflife,irrespectiveofillnessanddisability’.17Aspartofthis, itconfirmedashiftinemphasistowardsgreaterpersonalisation ofservices,includingagreaterfocusonpersoncentredapproaches andpersonalbudgetsoverthenextfewyears.LordDarzi’sreporton thefutureofthenationalHealthservice18drewonthispersonalised approachtoconsiderthewayhealthservicesarecommissionedand deliveredaspartofawiderpartnershipbetweenhealth,socialcareand localcommunities.
3� Valuing People Nowisanewthree-yearstrategytotakeforwardthe implementationofthepolicysetoutinValuing Peopleinthiswider developingsocialpolicycontext.
Why a new strategy?
4� in2001Valuing Peoplestatedthatinenglandtherewereapproximately 210,000peoplewithasevereandprofoundlearningdisability,ofwhom 65,000werechildrenandyoungpeople,120,000ofworkingage,
15 Valuing People: A New Strategy for Learning Disability for the 21st Century (Cm5086),DepartmentofHealth (2001)
16 inControl:www.in-control.org.uk/site/inCo/Templates/Home.aspx?pageid=1&cc=gB 17 Putting People First: A shared vision and commitment to the transformation of Adult Social Care,Departmentof
Health(2007) 18 High Quality Care for All: NHS Next Stage Review Final Report(CM7432),DepartmentofHealth(2008)
21 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
and25,000olderpeople.Additionallyitwasestimatedthatafurther 1.2millionpeoplehadamildormoderatelearningdisability.
5� in2004,aresearchpaperfromtheinstituteforHealthResearchat Lancasteruniversityestimatedthattherewere985,000peoplewith learningdisabilities,including190,000agedunder20,127,000aged 65orover,and795,000adults(definedasover20andunder65).19 ofthese,224,000werepeopleinenglandknowntosocialservices. Theremaining761,000peoplehadmildtomoderatelearningdisabilities, maynotbeknowntoservices,andmaynotneedverymuchadditional supportbeyondtheirownfamilies,friendsandsocialnetworks.However, withoutinformationaboutandaccesstoarangeofmainstreamservices, andhelpatpointsofcrisis,theirneedsmayescalatetothepointwhere theirsupportnetworksbreakdown.emersonandHattonalsoestimated thatthetotalnumberofadultswithalearningdisability(aged20or over)willincreaseby8%to868,000in2011andby14%to908,000by 2021.significantlyallthegrowthprojectionshowsmuchhigherincreases inthenumberofadultsagedover60.20
6� ApaperfromtheCentreforDisabilityResearchpublishedinnovember 200821looksatthenumbersofpeoplewithlearningdisabilitiesusing socialcareservices.Thisestimatesthatthenumberofadultswith
19 seeericemersonandChrisHatton,Estimating Future Need/Demand for Supports for Adults with Learning Disabilities in EnglandinstituteforHealthResearchatLancasteruniversity(2004)
20 seeericemersonandChrisHatton(2004) 21 see Estimating Future Need for Adult Social Care Services for People with Learning Disabilities in England,
ericemersonandChrisHatton,CentreforDisabilityResearch(2008)
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7
learningdisabilitiesknowntoservicesin2006/07was187,000while thoseusingserviceswas137,000.Further,itestimatesthatthereare currently147,000usingservices.Theimplicationoftheresearchisthat morepeoplewithmildtomoderatedisabilitieswillbecomeknownto, andstartusing,services.Thus,thenumbersofpeopleusingservicesis settoincreasebymorethan50%by2018to223,000.
sinceValuing Peoplein2001,considerableprogresshasbeenmade:
• manypeoplewithlearningdisabilitiesnowhaveavoicethroughthe developmentofadvocacy,theRegionalandnationalForums,and personcentredplanning;
• familycarershaveastrongervoicethroughregionalcarersnetworks, thenewnationalValuingFamiliesForum,andmorecarers’ assessments;
• leadershiptraininglikeTomorrow’sLeadersandPartnersin Policymakinghashelpeddevelopstrongself-advocateandfamily carerleadersinmanyplaces;
• somepeoplehavepersoncentredplansthathavemadeapositive differencetotheirlives;
23 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
• inControlhasshownthatpersoncentredplanningleadstobetter outcomesifthemoneycomeswithitthroughapersonalbudget;
• over2,000peoplewithlearningdisabilitieshaveDirectPayments;
• morepeoplearelivinginhomesoftheirown,eitherintenanciesor throughhomeownership;
• theoldlong-stayhospitals(withoneexception)havebeenclosedand mostofthepeoplewhomovedinthelastwaveoftransfersarein supportedlivingratherthanresidentialcare;
• afewmorepeoplehavepaidworkandmanymorepeoplehave opportunitiestodothingsinthedaytimeotherthanattendday centres;
• insomeareaspeoplehavehealthactionplansthathaveimproved theiraccesstohealthservices;
• thereareafewexamplesofpeoplewithcomplexneedsbenefiting fromthesedevelopments;
• thereisaLearningDisabilityPartnershipBoardineverylocalauthority areaandpeoplewithlearningdisabilitiesandfamilycarershave placesattheseboards;
• someboardshavedevelopedsuccessfulstrategiesforimplementing Valuing Peoplelocally.
8 However,sevenyearsonfromValuing Peoplemuchremainstobedone:
• thesocialexclusionTaskForceidentifiedpeoplewithmoderateand severelearningdisabilitiesasoneofthemostexcludedgroupsinour society;
• only15%ofpeoplehaveahomeoftheirown;
• morethan30%ofpeoplewithlearningdisabilitiesliveinresidential carehomes,asignificantproportionofwhicharemilesawayfrom theirplaceoforiginandtheirfamilies;
• manypeoplewithlearningdisabilitiesarelivingwitholderfamily carerswhohavetheirownneeds;
• onlyoneintenofthoseknowntosocialserviceshasanyformof paidemployment,andofthoseonlyveryfewworkmorethan16 hoursaweek;22
22 CommissionforsocialCareinspection(CsCi)data(2006/07)
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• peoplewithlearningdisabilitiesreportthattheyareoftenthetarget ofhatecrime,thattheyaredependentonverylimitedandexpensive publictransporttogetaround,andthatbeinglonelyisoneofthe thingstheyfearthemost;
• the2008reportoftheParliamentaryJointCommitteeonHuman Rights,A Life Like Any Other?,23highlightedcontinuedandextensive failureofservicesandsocietytoaccordpeoplewithlearning disabilitiestheirbasicrights;
• Healthcare For All,24thereportoftheindependentinquiryintoaccess tohealthcareforpeoplewithlearningdisabilities,reportedsignificant andongoinginequalitiesinaccesstohealthcareservicesandinthe qualityofservices.
9� TheValuing People Now25consultationwhichcompletedinMarch 200826gaveimportantmessagesaboutwhatneedstobedone. Thisstrategyhasbeenwritteninthelightoftheresponsestothe consultationdocumentandmeetingswithkeystakeholderstoreflect thekeymessages–inparticularto:
• emphasisethevitalroleplayedbyfamilycarers;
• addresswaysofhelpingpeoplewithcomplexneedsbenefitfromall oftheproposals;
• improveknowledgeandunderstandingaboutthewishesandneeds ofpeoplewithlearningdisabilitiesandtheirfamiliesfromdifferent culturesandethniccommunities,andsooffermoreappropriate support;
• ensurethatallagenciesarerigorousinmakingchangehappenand monitoringprogresseffectively;
• addressissuesaroundrelationshipsandtransport;and
• recognisethatmanypeoplewithlearningdisabilitiesneedsupport forthewholeoftheirlives.
23 A Life Like Any Other? Human Rights of Adults with Learning Disabilities(2008HLPaper40-1HC73-1),House ofLords,HouseofCommons,JointCommitteeonHumanRights(2008)
24 Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities,sirJonathanMichael,DepartmentofHealth(2008)
25 Valuing People Now: From progress to transformation,DepartmentofHealth(2007) 26 Asummaryoftheresponsetotheconsultation,Summary of responses to the consultation on Valuing People
Now: From progress to transformationisavailableatwww.dh.gov.uk/consultations
25 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
10� Thestrategycannotoperateinisolation.Aswellasthedevelopingsocial caretransformationprogrammeembodiedinPutting People First,the strategysitsfirmlyinthecontextof:
• LordDarzi’snextstageReviewofthenHs;
• thegovernmentPublicserviceAgreement(PsA)tomeasurethe numbersofpeoplewithmoderateandseverelearningdisabilitiesknown tocouncilsmovingintosettledaccommodationandpaidemployment;27
• thegovernment’sIndependent Living Strategy;28
• thenationalCarersstrategy;29
• AimingHighforDisabledChildren:bettersupportforfamilies;30
• TheChildren’sPlan;31
• thegovernmentresponsetotheDWPconsultationondisability employmentservices;32
• theDWPgreenPaperonWelfareReform;33
• ‘Progression through Partnership,34acommitmentfromfour governmentdepartmentstoworktogethertosynchronise responsibilities,systemsandservicestoimprovepost-16education opportunitiesforpeoplewithlearningdisabilities;
• theconsultationonNo Secretsonsafeguardingvulnerableadults;35 and
• ourambitiontoratifytheunConventiononDisabilityRightsin spring2009.
27 seedefinitionofPsA16onpage80 28 Independent Living Strategy,officeforDisabilityissues(2008) 29 Carers at the heart of 21st-century families and communities,DepartmentofHealth(2008) 30 Aiming High for Disabled Children: better support for families,HMTreasury/Departmentforeducationandskills
(2007) 31 The Children’s Plan: building brighter futures.DCsFCM7280(2007) 32 Helping people achieve their full potential: Improving Specialist Disability Employment Services consultation –
Summary of Responses,DepartmentforWorkandPensions(2008) 33 greenPaperNo one written off: reforming welfare to reward responsibility,DepartmentforWorkandPensions
(2008);WhitePaperRaising expectations and increasing support: reforming welfare for the future,Department forWorkandPensions(December2008)
34 ‘Progression through Partnership’: A Joint Strategy between the DfES, DH and DWP on the role of Further Education and Training in Supporting People with Learning Difficulties and/or Disabilities to Achieve Fulfilling Lives, Thestationeryoffice(2007)
35 Safeguarding Adults: A Consultation on the Review of the ‘No Secrets’ Guidance: www.dh.gov.uk/en/Consultations/Liveconsultations/DH_089098
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the four guiding principles
11� Thestartingpointforthenewstrategyisthere-affirmationofthefour guidingprinciplessetoutinValuing People:
Rights:
• Peoplewithlearningdisabilitiesandtheirfamilieshavethesame humanrightsaseveryoneelse.
Independent living:
• Thisdoesnotmeanlivingonyourownorhavingtodo everythingyourself.Alldisabledpeopleshouldhavegreater choiceandcontroloverthesupporttheyneedtogoabouttheir dailylives;greateraccesstohousing,education,employment, leisureandtransportopportunitiesandtoparticipationinfamily andcommunitylife.
Control:
• Thisisaboutbeinginvolvedinandincontrolofdecisionsmade aboutyourlife.Thisisnotusuallydoingexactlywhatyouwant, butisabouthavinginformationandsupporttounderstandthe differentoptionsandtheirimplicationsandconsequences,so peoplecanmakeinformeddecisionsabouttheirownlives.
Inclusion:
• Thismeansbeingabletoparticipateinalltheaspectsof community–towork,learn,getaboutandmeetpeople,be partofsocialnetworksandaccessgoodsandservices–andto havethesupporttodoso.
a human rights approach
‘I don’t know much about the convention on human rights of people with disabilities but I do feel strongly that everyone with a disability should have equal rights to those who don’t have disabilities.’
evidencefrompersonwithlearningdisabilitiestotheJoint CommitteeonHumanRights
27 VALuingPeoPLenoW:AneWTHRee-yeARsTRATegyFoRPeoPLeWiTHLeARningDisABiLiTies
12� TheJointCommitteeonHumanRightsreport,A Life Like Any Other?36 foundthatadultswithlearningdisabilitiesareparticularlyvulnerableto breachesoftheirhumanrights.itrecommendedthatValuing People Nowshouldpromotea‘humanrightsbasedapproach’andprovide practicalguidancetopublicauthoritiesonhowhumanrightsprinciples canbeusedtosecurebettertreatment.
13� ThegovernmentresponsetotheJointCommitteesetoutwhere thegovernmentisalreadytakingactiontopromoteawarenessand apositiveapproachtotherightsofadultswithlearningdisabilities undertheDisabilityDiscriminationAct1995(asamended)andthe HumanRightsAct1998.37Thegovernmentagreedtoprovidethe JointCommitteewithafurtherresponsewhenitrespondedtothe consultationonValuing People Now.Thisisbeingpublishedasa separatedocumentalongsidethisstrategy.
14� Thisstrategypromotesahumanrightsbasedapproachandtherights setoutintheunConventiononHumanRights.itconfirmsthatadults withlearningdisabilitieshave,andshouldbeabletoenjoyonanequal basis,thesamehumanrightsaseveryoneelse.itsetsoutthefurther stepsthatareneededforpeoplewithlearningdisabilitiestoachieve
36 A Life Like Any Other? Human Rights of Adults with Learning Disabilities(2008HLPaper40-1HC73-1), HouseofLords,HouseofCommons,JointCommitteeonHumanRights(2008)
37 www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyandguidance/DH_084614
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freedom,respect,equality,dignityandautonomyintheireverydaylives. Thisincludesactionto:
• promotehumanrightsinhealthcarethroughpromotinggood practice;
• supportindependentadvocacytoachieveagreaterimpactforpeople withlearningdisabilities,includingpeoplefromblackandminority ethniccommunitiesandthosewithcomplexneeds;
• addressthespecificissuesforpeoplewithlearningdisabilitieson safeguardingintheNo Secretsconsultation;
• reducehatecrimetorwardspeoplewithlearningdisabilities;
• addressissuesaroundsocialexclusion,povertyandisolation;and
• promotetheinvolvementofpeoplewithlearningdisabilitiesand familycarersinallaspectsoflocal,regionalandnationalworkforce planninganddelivery.
15� underpinningthisapproachistheexpectationthatservicesdelivering supporttopeoplewithlearningdisabilitieswillacttoensuretheyare fullycompliantwiththelaw,especiallytheHumanRightsAct1998 andtheDisabilityDiscriminationAct2005,andaremindfulofthe requirementsoftheunConvention.TheDisabilityequalityDutywithin thatActrequirespublicbodiestochecktheimpactoftheirpolicieson thelivesofdisabledpeople–especiallywheretheoutcomesforpeople withlearningdisabilitiesareworsethanforthepopulationasawhole (eghealth,employment,housing).
16� Forallofus,rightscomewithresponsibilities.Citizenshipisalsoabout contributingtosociety,inwhicheverwaywecan.Peoplewithlearning disabilitieshavetraditionallybeenviewedasrecipientsofcareandof services.Butthey,too,havearoletoplayascontributors.Wherever possible,peoplewithlearningdisabilitiesshouldbesupportedto work,paytaxes,vote,dojuryduty,havechildren,andparticipate incommunityactivitiesorfaithgroups.Manypeoplewithlearning disabilitiesinusingdirectpaymentsorpersonalbudgetswillcontribute totheeconomybybecomingemployers.Allthesethingsbenefitthe widersociety.
29
Chapter 1: Including everyone
30 Chapter1:InCludIngeveryone
Overall policy objective:allpeoplewithlearningdisabilitiesandtheir familieswillbenefitfromValuing People Now.
Valuing ALL people
1.1� thevisionofValuing People Nowisthatallpeoplewithlearning disabilitiesaresupportedtobecomeempoweredcitizens.Ithasto beinclusiveofthosegroupsthataregenerallymostexcluded.Itis importantthatthisincludes:
• peoplewithmorecomplexneeds;
• peoplefromblackandminorityethnicgroupsandnewlyarrived communities;
• peopleontheautisticspectrum;and
• offendersincustodyandthecommunity.
1.2� Inservicetransformation,providers,commissionersandpolicymakers needtofocusonthosewhoaretraditionallymostlikelytobeleftout. oftenthiswillmeanmakingspecificadjustmentstoensurethattheir particularneedsaremet.
People with ‘more complex needs’
‘If services develop communication and accessibility for … people [with the most complex needs] they are probably getting it right for most people with learning disabilities.’ responsetotheconsultation
Definition:Inthisstrategytheterm‘complexneeds’isusedtodescribe arangeofmultipleandadditionalneedsthatpeoplewithlearning disabilitiesmayhave.thiscanincludepeoplewithprofoundand multiplelearningdisabilities38andpeoplewhosebehaviourpresentsa challenge.however,people’sneedsarenotfixed;theymaydevelop morecomplexneedsinlaterlifeormaydisplayless‘challenging’ behaviouronceappropriatesupportisgiven.
1.3� Forpeoplewithmorecomplexneedsequalityofaccessandopportunity usuallymeansthatspecificadjustmentsneedtobemadeandthismay includeveryspecialisedsupport,bothintenseandongoing.however, lackofunderstandingandaspirationaboutwhatcanbeachieved sometimesleadstoanassumptionthatpeoplewillbepassiverecipients
38 SeeMencap'sfactsheetonpeoplewithprofoundandmultiplelearningdisabilities:www.mencap.org.uk/
valuIngpeoplenow:anewthree-yearStrategyForpeoplewIthlearnIngdISabIlItIeS 31
ofcarethroughouttheirlives,asopposedtopeoplewhocanmake decisionsandliveasempoweredcitizensinoursociety.
1.4� thevisionforpeoplewithmorecomplexneedsisthesameasfor everyone:inclusionandparticipationinallareasofcommunitylife, includinglivingindependentlyandhavingpaidwork.toassumethat somepeoplecannot,andwillnever,achievetheseistosetaceilingon whatprogresscanbemade,bothbyanindividualandbyasociety.
projectSearchhighschooltransitions programme
projectSearchisayear-longinternshipmodeldevelopedinohiowith provensuccessingettingpeoplewithmoderateandseverelearning disabilitiesintopaidworkandkeepingthemthere.
acollegetutorandjobcoachesrunaprogrammeofworktrainingfor internsviaaseriesofrealworkplacementsinthehostemployer organisation.theprojectteamarebasedintheemployerorganisation buttheonlyfinancialcosttotheemployerissomestafftime,providing atrainingroomanddeskspace:theinternsareunpaidandremainon governmentbenefitsduringthescheme.thetutorandjobcoachesare paidforbybringingtogetherfundingtheinternwouldhavereceived fromtheeducationalandvocationalsupportprogrammes.
themodelhasbeenestablishedfor13yearsandrunssuccessfullyin variouslargeamericanandworld-wideorganisations,including CincinnatiChildren’shospital,severalsmallerhospitalsandtheFifth thirdbank.Manyoftheinternssecureandretainfull-timepaid employmentwiththehostorganisation;theotherscompletethe programmeandleavewithskillsthatcanbeusedinotherwork environments.theyaregenerallysupportedbyajobcoachtosecure employmentelsewhere.
themodelhasnowbeenadoptedinleicesterandnorwich,withremploy providingthejobcoaches,leicesterCollegeandCityCollegenorwich providingthetutorsandsomestart-upcostsinnorwichfundedbynorfolk CountyCouncil.leicesterCityCouncil,leicesterCollegeandnorfolkand norwichuniversityhospitalarethehostemployers.
32 Chapter1:InCludIngeveryone
1.5� however,ithastoberecognisedthatforsomepeoplewithhighly complexneeds,suchasthosewithprofoundandmultiplelearning disabilitiesorwhoaremedicallydependent,paidemploymentposes particularchallenges,althoughitremainsanaspiration.appropriateand skilledsupportisrequiredtoenablethemtoparticipateincommunity lifeasfullyaspossible;andenablingthemtoleadfulfillingliveswith opportunitiesforgrowth,relationships,decision-makingandself-expressionwillalsodefinethemasequalcitizens.personcentred planningisattheheartofthis,andinnovativeideasandpractice,such asCirclesofSupportcanfacilitatethis.
CirclesofSupport:Christian’sstory
‘acircleofsupport,sometimes calledacircleoffriends,isa groupofpeoplewhomeet togetheronaregularbasisto helpsomebodyaccomplishtheir personalgoalsinlife.’ www.circlesnetwork.org.uk/ circles_of_support.htm
Christianhasverycomplexneeds,includingmanyhealthand communicationchallenges.hiscirclebeganwhenhewasatschool, afterhismumattendedsometrainingaspartoftheCredoeast project,paidforbytheirlocalauthority.
thepeopleinChristian’scircleareallvolunteersandcomefrom allwalksoflife:familyfriends,taxidriverswhousedtotakehim toschool,professionalswhohavecomeinandoutofhislifeand someofhissister’sfriends.theywereallpeoplethatChristian’s familythoughtheliked,egpeoplewhohemadeeyecontactwithor wascomfortablesittingnextto.hiscirclegettoknowhimthrough spendingsocialtimewithhimandhisfamilytounderstandhis historyandexperiences,andbyusingobjectsofreferenceandsome intensiveinteraction.
33 valuIngpeoplenow:anewthree-yearStrategyForpeoplewIthlearnIngdISabIlItIeS
thecircle’smainpurposeistosupportChristianindrawingupplans aboutmovingforwardinlifeandbeingtherewithhimtomake surethatheachievesasmuchaspossible.Christian’sfirstpath (planningalternativetomorrowswithhope)wasfocusedontransition fromschool,findinghisownplacetoliveandsettinguphisdirect payments.everythingwasachieved,andhisnewpathisallabout relationshipsandcommunityconnecting.
Christian’scirclehassupportedhimtohavemoresocial opportunities.heisayoungmanatgreatriskofsocialexclusion andisolationandthishelpsminimisetheserisks.thecircleprovides advocacyandfriendship,andaddsadimensiontocreativeplanning andproblemsolving.Italsoprovidesasourceofenergywhichis sometimesdifficultforafamilyalonetosustain.oneofthemost powerfulbenefitsofhavingacirclewasseenwhenChristianwas veryillandmembersstoodaroundhishospitalbedtoensurethathe wasofferedappropriatetreatment.
‘Christian benefits immensely from his circle. We have helped him to create the kind of network that people without his complex disability make naturally through work, education and leisure. It is wonderful to see a group of people gathering around Christian, who does not use words or signs, and really try to walk in his shoes, be truly centred on him and be positive and creative.’ Christian’smum
ForinformationabouttheCredoprojectandtheCirclesnetworkgo to:www.circlesnetwork.org.uk/east_region.htm
1.6� addressingtheissuesforpeoplewithcomplexneedsisreallyabout embeddingtheprinciplesofpersonalisationwithinallaspectsof planning,commissioninganddeliveryofsupportservices.Itisalso aboutrecognisingthattheveryparticularsupportneedsofanindividual willmeanveryindividualisedsupportpackages,includingsystemsfor facilitatingmeaningfultwo-waycommunication.
34 Chapter1:InCludIngeveryone
Intensiveinteraction:facilitating two-waycommunication
Intensiveinteraction39isanapproachtofacilitatingtwo-way communicationwithchildrenandadultswithsevereorprofound learningdisabilitiesand/orautism,whoarestillatanearlystageof communicationdevelopment.Itcanbeusedtoteachpeople fundamentalcommunicationortoprovidethemwithameanstoenjoy beingexpressiveandfeelingconnected.
buildingontheconceptofaugmentedmothering(developedbythe psychologistgaryephraim),Melanienindanddavehewettidentified somekeyfeaturesofbasiccommunicationthatoccurbetweenamother andherchild.the‘interactivestyleismodelledonthenurturingstyleof caregiver-infantinteractionandisusedwithintensityandcritical reflection.’40
Intensiveinteractionisapracticalapproachtofacilitating communication.thepersonwithalearningdisabilityworkswiththeir communicationpartnerwhoadoptsaninteractivestyle,forexample:
• alteringvoiceorgazeorbodylanguagetoappearlessthreatening andmoreinteresting;and
• respondingtothethingsapersonwithalearningdisabilitydoes; lettingthem‘takethelead’bycommentingontheiractions,joining inwiththem,playfullyimitatingthem.
whiletheevidenceofthisapproach’ssuccessismainlyasmallsampleof casestudies,itdoespointtoincreasedsociallyinteractivebehaviour, eggreateruseofeyecontact;increasedtolerationof,orengagementin, physicalcontactactivities;additionalepisodesofsustainedjointattention; increaseduseofpotentiallycommunicativevocalisations;andanincreased regardforfacialsignalling.thereisalsoevidenceinsomecasesthat peoplehavestartedtoinitiatecommunicationandsocialinteraction.
Formoreinformationsee: www.intensiveinteraction.co.uk/about/what.php
www.leedsmentalhealth.nhs.uk/ldservices/intensiveinteraction.cfm
3940
39 Access to Communication: Developing the basics of communication with people with severe learning difficulties through Intensive Interactionnind,Mandhewett,d(1994)
40 nind,2000,takenfromanabstractpresentedatISeC2000:SpecialSchools,IntensiveInteractionandInclusion
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1.7� goodservicesforpeoplewithcomplexneeds:
• startwithpersoncentredplanning,andwiththeassumptionthat everyonecanbenefitfromdirectpaymentsandpersonalbudgets;
• developanduseappropriatecommunicationsystemswherepeople havelittleornoverbalcommunication,takingguidancefromfamilies andfriendstounderstandwhatgesturesorsoundsmaymean;
• donotassumethatbehavioursthatseemchallengingaresimply partofaperson’sdisability;weknowthatthesebehavioursserve afunctionfortheindividualanditisessentialtoidentifywhatthat functionis.oftenthesebehavioursaretheonlywaythatindividuals haveofcommunicatingthattheirneedsarenotbeingmetanditis essentialtoaddressthis–ignoringthemmayputlivesatrisk;
• workwithrisk,constructivelyrecognisingthatpeopledevelopand growastheyaresupportedtotakeonmoreresponsibility;
• startwithplanningforpeoplewiththemostcomplexneeds, addressingwhatadditional and improvedservicesandsupports areneededsothattheycanbeincludedwitheveryoneelse,andnot assignedtoseparateorsegregatedservices;
• startwithonepersonatatimeinradicalchangeinitiatives–afew successstoriescanbreakdownattitudinalbarriers;
• fullyinvolvefamiliesandcarersindiscussionsanddecisionmaking fromthebeginning;and
• provideaccesstospecialisedsupportandservicesclosetohome whereneeded,alongsidemoremainstreamsupportoraspartofan inclusiveandindividualisedpackage.
1.8� resourcesareavailabletosupportdevelopmentoflocalserviceswhich meetthisvision.theseincludegoodpracticeguidanceonServices for People with Learning Disability and Challenging Behaviour or Mental Health Needs (Mansell2),41whichexplainshowtodevelopindividualised responsesforpeoplewhochallengeservices,andCommissioning Specialist Adult Learning Disability Health Services.42Indeveloping serviceslocally,itisimportanttoaddressparticipationinthelocal communityasabove.
41 Services for People with Learning Disability and Challenging Behaviour or Mental Health Needs(Mansellreport, revisededition),departmentofhealth(2007):www.dh.gov.uk/en/publicationsandstatistics/publications/ publicationspolicyandguidance/dh_080129
42 Commissioning Specialist Adult Learning Disability Health Services: Good Practice Guidance: www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_079987
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1.9� tailoringcareandsupportforpeoplewithcomplexneedsrequires imagination,skillandcommitmentfromthestaffwhoprovidesupport topeopleandthemanagerswhoemploythosestaff.thereisclear evidencethatwhereskilledpersoncentredapproachesareused,people withcomplexneedsbenefit.thisrequiresmoreemphasisinworkforce developmentsothatindividuals,familiesandlocalauthoritieshelping themcommissionservicescangettheskilledsupporttheyneed.
People from black and minority ethnic groups and newly arrived communities
1.10 peoplewithlearningdisabilitiesfromblackandminorityethnicgroups andnewlyarrivedcommunitiesandtheirfamiliesoftenfacewhat iscalled‘doublediscrimination’.theyexperienceinsufficientand inappropriateservices.thismaybecausedby:
• policyandserviceswhicharenotalwaysculturallysensitive;
• wrongassumptionsaboutwhatcertainethnicgroupsvalue;
• languagebarriers;and
• discrimination.
yetevidenceshowsthatincreasingnumbersofchildrenandyoung peoplefromblackandminorityethniccommunitiesarebeingidentified ashavingspecialeducationalneedsandmoreprofounddisabilities.
37 valuIngpeoplenow:anewthree-yearStrategyForpeoplewIthlearnIngdISabIlItIeS
1.11 theracerelations(amendment)act(2000)requiresallservicesto becompliantandpublicauthoritiesmustmonitortheirworkfor anyadverseeffectonraceequality.thismeansthatallactionsand initiativesdescribedinthisstrategyshouldbeassessedfortheirimpact onminorityethniccommunities.however,48%ofpartnershipboards whorespondedtoasurvey(54%)in2006/07saidthatnoraceequality impactassessmenthadbeenundertaken–eitherfortheboarditselfor aspartofawiderequalitiesimpactassessment.andarecentreview ofpartnershipboardsindicatedthatonly17%ofpartnershipboards involvedfamiliesfromblackandminorityethniccommunities.43
1.12 Insomeruralareastherearesmallnumbersofpeoplefromblackand minorityethnicgroupsandnewlyarrivedcommunitiesandtheycanbe lessvisible.thiscanmeanthatservicesdonotmeetpeople’sneeds. guidanceonworkingwithpeoplefromminorityethnicgroupsinrural areascanhelplocalserviceplannersanddevelopersaddressthis.44
1.13 whilethelegislativeframeworktosupportequalityofaccesstoall servicesisinplace,thereisclearlymuchtobedoneforblackand minorityethnicgroupsandnewlyarrivedcommunitiestobefully included.thenationaldirectors,workingwiththevaluingpeople regionalteam,anddeputyregionaldirectorsforSocialCareand partnershipswillleadaprogrammeofwork:
• toraisetheprofileofthisissueandensureitistakenseriouslyby allagenciessupportingpeoplewithlearningdisabilitiesandtheir familiessothatlocallytheywilldesignandcommissionservicesto ensuregenuineinclusion;and
• includingworkingwiththenationaladvisorygroupforpeople withlearningdisabilitiesandethnicity(naglde)todevelopand disseminategoodpracticetoinformpolicy,inlinewithnaglde’s recommendations.
People with autistic spectrum conditions
1.14 peoplewithlearningdisabilitiesandautisticspectrumconditions needsupportthatrespondstotheirindividualneeds,fromstaffwith understandingandexperienceofworkingwiththem.Indesigning anddeliveringlocalserviceswhichwilladdressthespecificneedsof
43 Valuing People: second national ethnicity survey,Chrishatton(2006/07): http://valuingpeople.gov.uk/dynamic/valuingpeople90.jsp
44 People from minority ethnic backgrounds living in rural areas,ghazalaMir,CentreforresearchinprimaryCare, universityofleeds: www.valuingpeople.gov.uk/echo/filedownload.jsp?action=dFile&key=459-
38 Chapter1:InCludIngeveryone
peoplewithlearningdisabilitiesandautisticspectrumconditions, healthandsocialcarebodiesmaywishtoconsultthedhnote Better Services for People with an Autistic Spectrum Disorder: A Note Clarifying Government Policy and Describing Good Practice.45 with othergovernmentdepartments,dhisworkingtodevelopastrategy onsupportforadultswithautisticspectrumconditions,including commissioningprevalenceresearch.
Learning disabled offenders in custody and the community
1.15 agrowingnumberofpeoplewithlearningdisabilitiesappeartobein contactwiththecriminaljusticesystem.Somepeoplewithmildlearning disabilitiesareinprison.oftentheirspecificneedsarenotrecognised ormetbecausetheirlearningdisabilityisnotvisible.Commitmentwas madeintheyouthCrimeactionplantoconsiderhowgovernment bestmeetsyoungoffenders’specialeducationalneedsaspartofthe newfundinganddeliverymodelandplansshouldbedevelopedinthe contextoftheevidenceandrecommendationsfromthebercowreview ofServicesforChildrenwithSpeech,languageandCommunication needs.46personcentredplanningandhealthactionplanningare particularlyimportantforpeoplewhoareinprisonorsubjectto communitysentences.aspartofoffendermanagementprocessesthere shouldbeahealthscreeningprogrammethatidentifiesanoffender’s learningdisabilityandanyphysicaland/ormentalhealthissues.this shouldformthestartoftheindividual’shealthactionplanandenable accesstoappropriateeducationandrehabilitativeprogrammes.good practiceguidance,issuedin2007,isnowavailableforpeopleworking inthecriminaljusticesystemonhowtoworkwithandsupportpeople withlearningdisabilities.47
45 Better Services for People with an Autistic Spectrum Disorder: A Note Clarifying Current Government Policy and Describing Good Practice:www.dh.gov.uk/en/publicationsandstatistics/publications/ publicationspolicyandguidance/dh_065242
46 Better Communication: An Action Plan to improve services for children and young people with speech, language and communication needs.departmentforChildren,SchoolsandFamilies,dCSF–01062(2008)
47 Positive Practice Positive Outcomes: A Handbook for Professionals in the Criminal Justice System working with Offenders with Learning Disabilities,CareServicesImprovementpartnership(2007): www.kc.csip.org.uk/viewresource.php?action=viewdocument&doc=98519&grp=1
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learningdisabilityawarenesstraining forprisonstaff
In2007anewone-daytrainingcoursewaspilotedacrossthesouth-east region.thecoursewasopentoalltypesofstaffworkinginaprison settingintheregion.Itisdeliveredbyalearningdisabilityspecialistand aco-trainerwithalearningdisabilityandalsoincludesdvdfootageof ex-offenderswithlearningdisabilitiestalkingabouttheirexperiences.
Itisdesignedtoraiseawarenessoftheneedsofindividualsinprison withlearningdisabilitiesandrelatedconditions.Itcoversidentificationof learningdisabledbehaviour,thephysicalandmentalhealthneedsof peoplewithlearningdisabilities,communicationandavarietyofissues specifictomanagingpeoplewithlearningdisabilitieswithintheunique environmentoftheprisonsystem.
thepilotwasasuccessandnowhasadditionalfundingtocoverwork acrossenglandandwales,withallprisonsbeinginvitedtosendthree keymembersofstafftoattendandhopefullysharealltheyhavelearned uponreturning.
theorganisationswhohavedevelopedandrunthisworkareKeyring andtheSkillnetgroup,workingwithvaluingpeopleandtheCare ServicesImprovementpartnershipinthesouth-eastregion.
Children with learning disabilities
1.16 SinceValuing Peopletherehavebeenanumberofkeypolicieson servicesforchildren–notleastthe£340millionAiming High for Disabled Children programmeforlocalauthoritychildren’sservicesinthe period2008–11.Ithasthreepriorityareas–accessandempowerment, responsiveservicesandtimelysupport,andimprovingqualityand capacity.thefundingincludes£280millionforincreasingshort-breaks fordisabledchildren,£35millionforachildcareaccessibilityproject toimproveaccesstochildcarefordisabledchildren,£19millionfora transitionSupportprogrammeand£5millionfordevelopingparents’ forumsineverylocalauthorityarea.pCtshavealsoreceivedadditional fundingwhichisincludedintheirbaselineallocations.
40 Chapter1:InCludIngeveryone
1.17 however,whilethesepolicieshavestartedtoaddresstheparticular issuesandimbalancesthatchildrenwithlearningdisabilitiesface,there isstillworktobedone.Someoftheobstaclesthatyoungpeoplein transitionandadultsfacearerootedintheirownlackofexpectation andaspirationabouttheiradultlives,oftenasaresultofnegative messagesfromthosearoundthemorsimplyalackofunderstanding.
1.18 Forthisreason,therehasbeenmuchworktoensurethatsomeof theheadlinestrandsofwork(aroundemployment,forexample)take accountoftheneedtoengagethoseinvolvedinpre-16education policy,aswellashealthandsocialcaredelivery,recognisingthat theseissuesneedtobeaddressedinchildhoodandpartlythroughthe compulsoryeducationsector.Socialcareandhealthcareprofessionals andteachersallhavearoletoplayinraisingtheexpectationsofchildren andyoungpeople(andtheirfamilies)aboutthekindoflivestheycan liveasadults.Familiesandparentsarevitalinthistoo,andtheirown fearsaboutthesupportavailabletoensuretheirsonsordaughterscan growupintofully-fledgedadultcitizensneedtobetakenseriouslyand addressed.
Family carers and families
1.19 Familiesareusuallythemainsourceoflove,careandsupportfor childrenandadultswithlearningdisabilities.thisisespeciallythecase
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forpeoplewithcomplexneeds.evenwhenpeopleleavehome,theydo notleavethefamily.Familiescontinuetoofferalifetimeofinvolvement, supportandadvocacy.Sometimesfamilymemberscandisagree.when thisisthecaseitisimportantthateveryone’sviewsandperspectives areunderstoodandrespected.wherethereisclearandcontinued disagreementbetweenpeoplewithlearningdisabilitiesandtheir families,theymayneedsupporttoresolvetheirdifferencesofopinion, includingindependentadvocacytosupportthepersonwithalearning disability.
Kieran’sstory
Kieranisa39-year-oldmanwithseverelearning disabilities.helivesathomewithhismumanddad. Kieranusedtogotoarespitecentreforafewweeks eachyearbuthisparentsdidn’tgetanychoiceabout whenthatwas.thingsbecamedifficultwiththerespite service:Kieranalwaysseemedpoorlywheneverhis parentswentawayortheywouldgettelephonecalls toaskthemtogoin–soitwasnorespite.Kieran’s socialworkertoldthemaboutdirectpaymentsand theydecidedtouseittoemploycarerstocometothe housetosupportKieranwhiletheywereaway.
theynowhavetwocarersandfourbankcarersfor emergencies.Kieranismuchhappierandhisparents feelsomuchmoresettledaboutgoingaway.recently theywentonacruiseandwereabletorelaxandenjoy themselveswithoutworryingaboutKieran.Kieran’s parentssay:‘wearesohappy–wewouldn’tchange athing.ourplanforthefutureisforKierantoremain livinginhisownhomewithsupport,andforusto moveoutwhenweretire.weneverthoughtthiscould happenbutnowitcan.’48
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42 Chapter1:InCludIngeveryone
1.20 Itisvitalthatfamilycarersarerecognisedandvaluedaskeypartnersin thedeliveryofthisstrategy.yetmanyfamilycarersstillfacedifficulties andfurtheractionisneededtoaddressthese:
• familiesfromethnicminoritiesareatgreaterriskofisolation;
• over29,000adultslivewithaparentovertheageof70(Mencap estimate).49CSCIfoundmanylocalauthoritieswerefailingtoplanfor thefuturewitholderfamilies;50
• peoplewithlearningdisabilitieswhoarecarersareofteninvisibleto servicesbecauseoflackofrecognitionofmutualcaringofparentsor partners;
• Healthcare for All saidfamilycarerswerenotvaluedaspartners byhealthserviceprofessionals,withseriousconsequencesfortheir familymember;
• manyfamilycarersareunawareoftheirrighttoacarers’assessment orareturningthemdownbecausetheydonotthinkitwillleadto gettingthesupporttheyneed.
1.21 thegovernmentpublished Carers at the heart of 21st-century families and communities inJune2008. thisten-year,cross-governmentstrategy saysthatallfamilycarersshouldgetsupportintheirownrightto enablethemtolivealifebeyondtheircaringroleandresponsibilities. thestrategyisunderpinnedbyfivekeyaspirationsthatby2018:
• carerswillberespectedasexpertcarepartnersandwillhaveaccess totheintegratedandpersonalisedservicestheyneedtosupport themintheircaringrole;
• carerswillbeabletohavealifeoftheirownalongsidetheircaring role;
• carerswillbesupportedsothattheyarenotforcedintofinancial hardshipbytheircaringrole;
• carerswillbesupportedtostaymentallyandphysicallywelland treatedwithdignity;and
• childrenandyoungpeoplewillbeprotectedfrominappropriate caringandhavethesupporttheyneedtolearn,developandthrive.
49 thehousingtimebomb:thehousingcrisisfacingpeoplewithalearningdisabilityandtheirelderlyparents, Mencap(2008):www.mencap.org.uk/document.asp?id=293&andgroup=&subjectid=&sorter=1&origin= pagetype&pagetype=112&pageno=&searchphrase=
50 The State of Social Care in England,CSCI(2005/06)
43 valuIngpeoplenow:anewthree-yearStrategyForpeoplewIthlearnIngdISabIlItIeS
1.22 thegovernmenthasmade£255millionavailablebetween2008and 2011,tohelpimplementthestrategy.thisisontopofthe£720million alreadycommittedbetween2008and2011intheCarer’sgrant.
1.23 theStandingCommissionforCarershasbeenchargedwithensuring thatallfamilycarersareincludedinimplementationofthenewnational CarersStrategy.
Making it happen locally and regionally – key recommended actions
• Commissionersandserviceproviderstoaddresstherecommendations oftheMansellreportandtoincludepeoplewithcomplexneedsin thedevelopmentofself-directedservicesintheirarea.
• partnershipboardstodeveloptheirownequalitiesSchemestoshow howtheyareimplementingandmonitoringequalitieslegislation.
• localauthoritiestocarryoutaCarers’assessmentwhenthereare plannedchangestothesupportforapersonwithlearningdisabilities whoisbeingsupportedbytheirfamilyinsomeway.
• deputyregionaldirectorsforSocialCareandpartnershipsto workwithinthegovernmentofficesandwithvaluingpeopleand personalisationregionalleadstobuildcapacityandcapabilitysothat localplannersandservicedelivererswill:
– includeandtakeaccountoftheissuesforpeoplefromthefour excludedgroups;
– ensuretheirpracticeisinlinewithnationalpolicy,lawandgood practice;and
– ensurethattheyandpartnershipboardsareawareofthenew opportunitiesforfamilycarers.
National level actions for government
• thenationaldirectorswillappointnationalprogrammeleads tochampionissuesforpeoplewithmorecomplexneedsand peoplefromblackandminorityethnicgroupsandnewlyarrived communitiesandsupport,throughdeputyregionaldirectorsfor SocialCareandpartnerships,regionalandlocalworkprogrammes tobringaboutserviceimprovementstoaddresstheneedsofthese groups.
44 Chapter1:InCludIngeveryone
• thenationaldirectorswillalsoappointanationalprogrammelead forfamilieswhowillleadaprogrammeofworkincluding:
– continuedinvestmentinthenationalvaluingFamiliesForum;
– investmentincarerorganisationstobuildtheircapacitytodeliver forfamilycarersofpeoplewithlearningdisabilities,andcarers whohaveadisability;and
– fundinganationalpartnersinpolicyMaking51coursetobring familycarersanddisabledpeopletogethertohelpbuildtheir capacityasleaders.
• thenationaldirectorswillleadworktoexplorehowtointroduce carers’impactassessmentsonallnewgovernmentpoliciesrelevant tofamilycarers.
• dhwillensurethattheneedsofoffenderswithlearningdisabilities areincludedinthedeliveryprogrammearoundoffenderhealth.
• theforthcominggoodpracticeguidanceforcommissionersof forensicservicesforpeoplewithlearningdisabilitieswillhelpensure thatlocalcommissioningreflectstheneedsofoffenderswithlearning disabilitiesbothinprisonandonreleaseintothecommunity.dhwill considerhowitmonitorsimplementationoftheguidance.
51 partnersinpolicyMakingtMwebsite:www.partnersinpolicymaking.co.uk/index.php
45
Chapter 2: Personalisation – starting with the individual and their family
46 Chapter2:personalisation–startingwiththeindividualandtheirfamily
Overall policy objective: allpeoplewithlearningdisabilitiesandtheir familieswillhavegreaterchoiceandcontrolovertheirlivesandhave supporttodeveloppersoncentredplans.
Joe
‘Self directed support has enabled us to be an ordinary family again. Joe has started to live a life that is comparative with his peers, if not in some instances he is in a far better position. He now has his own personal assistants who assist him to do ordinary things like go to college, support him with his micro-enterprise, go to the gym, have a bath, and eat his meals. He has his own car which enables him to get out and about and more recently he has bought his own home next door to us. In fact, using the concept of Joe having his own individual budget has enabled him to design his support in a way that makes sense to him. He hasn’t taken any more money from the State, he has just utilised it in a far better way.‘Carolinetomlinson,Joe’smum52
2.1� personcentredplanning,advocacyanddirectpaymentstogivepeople morechoiceandcontrolintheirliveswereattheheartoftheoriginal valuingpeople.whendoneproperly,personcentredapproaches, supportplanningandpersonalbudgetscanmakeasignificantdifference inpeople’slives.Buttheirimpacthassofarbeenlimitedtorelativelyfew people:
• directpaymentsareonly1.1%oftotalexpenditureonlearning disabilityservices;
• alotofpeoplestilldonothaveapersoncentredplan;and
• littleworkhasbeendoneoninvolvingpeoplewithcomplexneeds intheirownplanningthroughthecreativeuseofdifferenttypesof communication.
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52 www.in-control.org.uk/site/inCo/templates/generalaspx?pageid=5843ecc=gB
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inControl
‘InControl is one of the most promising approaches to self-directed services. Building on years of work by disabled people to control the support they get, InControl began as a partnership between the Department of Health’s Valuing People Support Team, Mencap, a group of local authorities and independent development organisations working in the field of disability. They came together in 2003 to help local authority social services departments adopt ‘self-directed support’ systems for social care in which disabled people would control how they live and the support they need. In 2003 six local authorities – Essex, Gateshead, Redcar and Cleveland, South Gloucestershire, West Sussex and Wigan – piloted InControl’s self-directed support model focusing on people with learning difficulties. The InControl model quickly spread from people with learning and physical disabilities to older people who make up most of those receiving social care. By November 2007, 107 local authorities were members of InControl, and 2,300 people were receiving personal budgets using its model, many of them elderly people.’ 53
‘Reforming social care to achieve personalisation for all will require a huge cultural, transformational and transactional change in all parts of the system, not just social care but also for services across the whole of local government and the wider public sector.’
Transforming Social Care, laC,dh200854
2.2� Putting People Firstmakesanexplicitcommitmenttotransformservices, andmakethemmorepersonalisedtotheneedsoftheindividual user.itidentifiestheneedtoempowercitizenstoparticipateintheir communitiesaswellasshapetheirownlivesandthesupportthey receive.
2.3� Putting People Firstsetsoutavisionfortransformingsocialcare, supportinglocalauthoritiesandsocialcarepartnerstoreshapeand
53 Making It Personal,Charlesleadbeater,JamieBartlett,niamhgallagher,demos(2008) 54 www.dh.gov.uk/en/publicationsandstatistics/lettersandcirculars/localauthoritycirculars/dh_081934
48 Chapter2:personalisation–startingwiththeindividualandtheirfamily
redesigntheirsystemstogivepeoplemorecontrolovertheirsupport andallowthemtousetheresourcesavailablemoreflexibly.greater personalisationmeans:
• commissionerschanginghowtheyworkandwhattheydecideto buy,andgettingbetteratlisteningtopeople;
• providersworkingdifferently,inparticularbysettingupnewtypesof servicesaroundindividualsratherthangroups;
• commissionersandprovidersworkingwithlocaluser-led organisationstounderstandwhatsupportpeoplewant;
• moreindividualsandfamiliescommissioningtheirownservices;
• acompetentandwell-trainedworkforcewhoareflexible,person centredandskilledinsupportingpeopletobefullyincludedin society;
• personcentredplanningandsupportplanning;
• peoplewhoinspectandcheckservicesusingnewwaysofmaking sureservicesarepersonalisedandmeetpeople’swantsandneeds;
• moreconsiderationbeinggiventorespondingtopeople’scultural andreligiousbeliefs;
• supportforadvocacy,includingpeerandself-advocacy,andworking withuser-ledorganisations;
valuingpeoplenow:anewthree-yearstrategyforpeoplewithlearningdisaBilities 49
• morefocusonassistivetechnologytosupportpeopleintheirdaily lives;
• continuedefforttoenableeveryonetoliveindependentlivesintheir localcommunities–thisincludespeoplewithmorecomplexneeds; and
• marketdevelopmenttoensurethereisarangeofoptionsfor individualstochoosefrom.
2.4� greatercoordinationbetweenhealthandsocialcareservicesanda greaterfocusonoutcomesratherthanservicesshouldmeanthatpeople withlearningdisabilitiesandtheirfamiliescanexpectamoreperson centredapproachtoplanningsupportandimprovedoutcomesinterms ofsocialinclusion,empowermentandequality.morepeoplewith learningdisabilitiesshouldbeabletocommissiontheirownservicesto liveindependentlyandhaverealchoiceaboutthewaytheylivetheir lives.
paul’sstory
paulreallywantedagirlfriendtogooutwithand‘do newthingsandhavenicemealswithfriendslikemy brotherdoes’.athispersoncentredreviewhetold peoplehecouldnotgetagirlfriendbecausehecould notgooutonhisown.paultalkedaboutJoanwho wasawomanhelovedtospendtimewithatthe gatewayClub.oneoftheactionsfromhisperson centredreviewwasthatpaulwouldworkwithhiskey worker,samatthegrouphome,todeveloppaul’s relationshipcircleandthinkabouthiscommunity connections.paulandsamusedtherelationshipcircle tothinkaboutwhotheimportantpeoplewereinhis life,andthisledtoactionstosupportJoanandpaul tomeetatothertimesaswellasatthegatewayClub. asaresultofthisreviewpaulnowhasagirlfriendand paulandsamarenowmembersofthelocaldrama group.paulsaid:‘datingJoanisthebestthingthat everhappenedtome,all’cosofmyreview.’
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2.5� theevaluationreportoftheindividualbudgetpilotprogramme publishedinoctober200855foundthatholdinganindividualbudget wasassociatedwithbetteroverallsocialcareoutcomesandhigher perceivedlevelsofcontrol.Buildingonthelearningderivedfromthe individualbudgetpilots,therecentgreenpaperonwelfarereform announcedpublicconsultationonthepotentialofarighttocontrol individualbudgetsacrossdifferentincomestreamsfordisabledpeople. thehealthandsocialCareact2008extendsthebenefitsofdirect paymentstocurrentlyexcludedgroups.lorddarzi’snextstagereview ofthenhssetsouttheintentiontoexploreusingpersonalhealth budgetswithinthehealthservice.
2.6� withinthecontextofthetransformationandpersonalisationagendait isimportantthattheissuesspecifictopeoplewithlearningdisabilities andtheirfamiliesareproperlyaddressed.thisisparticularlythecasefor thosewithmorecomplexneedsandfromblackandminorityethnicand newlyarrivedcommunities.
Making it happen locally and regionally – key recommended actions
• localauthoritiesandtheirpartnerstobuildcapacityaroundperson centredapproachesandplanningsothatallpeoplewithlearning disabilitiesandtheirfamilieshavesupporttodevelopplanswhich identifywhatisimportanttothemnowandinthefuture,and supportandservicesthatareinformedbytheirpersoncentredplan.
• partnershipboardstoreviewtheirpersoncentredplanningstrategies inlightoftheforthcomingpersoncentredplanningguidance.
• partnershipboardstoworkwithkeyagenciestoensurethat personalisationstrategiesincludepersoncentredplanning approaches.
• personalisationstrategiestoincludeimplementationofperson centredplanning,supportplanningandcarers’impactassessments foralladultswithcomplexneedsorwherechangesareplannedin theirsupportandservices.
• servicestohavepersoncentredplansforeveryonetheysupport, andtousethesetoreviewandimprovethesupporttheyprovideto individualstoensurethatagreedoutcomescontinuetobemet.
55 Evaluation of the Individual Budgets Pilot Programme: Final Report(2008):www.dh.gov.uk/en/ publicationsandstatistics/publications/publicationspolicyandguidance/dh_089505
51 valuingpeoplenow:anewthree-yearstrategyforpeoplewithlearningdisaBilities
• agreaterfocusonuniversalservicesandtheuseofcommunity resourcestohelpsupportpeopletolivewithintheirlocalcommunity, whetherornottheyareeligibleforsocialcarefunding.
• localauthoritiestoensurethatthereareuser-ledorganisations intheirareawhichmakesuresupportisavailableforpeoplewith learningdisabilitiesandtheirfamilies.
• dhhasmadeoverhalfabillionpoundsavailabletolocalauthorities tosupportlocaltransformationofsocialcarethroughthenewsocial Carereformgrant.thegrantisworth£85millionin2008/09,£195 millionin2009/10and£240millionin2010/11.deputyregional directorsforsocialCareandpartnershipswill–withregional personalisationandvaluingpeopleregionalleads–ensurethat personalisationisprioritisedwithinthenewlyfundeddeliverysupport programmesandthatpeoplewithlearningdisabilitiesandtheir familiesbenefit.thiswillincludeinvolvingpeopleandtheirfamiliesin thedevelopmentoflocalstrategies.
National level actions for government departments
• thenationaldirectorswillworkwithrelevantgovernment departmentsanddeputyregionaldirectorsforsocialCareand partnershipstoensurethatthereformsetoutinPutting People First includesandbenefitsallpeoplewithlearningdisabilitiesandtheir families.
52 Chapter2:personalisation–startingwiththeindividualandtheirfamily
• dhisworkingwithkeystakeholders(includingtheassociationof directorsofadultsocialservices(adass),thelocalgovernment association(lga)andtheimprovementanddevelopmentagency (idea))todevelopaprogrammetodriveandsupportthenecessary changes.
• dhwillpublishnewpersoncentredplanningguidanceandensure thisisdisseminatedthroughouttheregions.
• theofficeofthenationaldirector(inpartnershipwiththePutting People Firstteam)willexplorehowpersoncentredinformationcan beusedtoinformstrategiccommissioningandwilldisseminategood practicethroughouttheregions.
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Chapter 3: Having a life
54 Chapter3:havingalife
I.� Better health
Overall policy objective: allpeoplewithlearningdisabilitiesgetthe healthcareandthesupporttheyneedtolivehealthylives.
‘Everyone can expect to live healthy lives with the appropriate support from a personalised and fair National Health Service, that ensures the most effective treatments within a safe system.’
highQualityCareforall(2008)
‘I get taken to this big place and I don’t know what will happen, doctors use lots of big words, I get scared, it’s important to know what to eat.’
‘I may not be able to tell you that I’m poorly.’
feedbackprovidedaspartofthevaluingpeoplenow Consultation(2008)
3.1� goodhealthbeginswithpromotingwell-beingandpreventingill-health andthisisthesameforpeoplewithlearningdisabilities;healthyactive lifestyleshavetobethestartingpointforall.accesstothefullrange ofhealthcareservicesincludingdentistry,screening,sexualhealth, maternity,healthvisitingandend-of-lifecareisessentialinensuringthat peoplewithlearningdisabilitiescantakegreatercontroloftheirhealth andwell-being.
everybodyactive
everybodyactiveinreading,asportandphysicalactivityprogrammefor adultswithlearningdisabilities,wasdevelopedtoenhancewell-being. theprogrammedeliversweeklysessionsincludingboccia,football, swimming,gym,trampolining,walkingandcycling.therearealso one-offeventsthroughouttheyeartocelebrateregularparticipants’ achievementsandcommitment.in2007–08theprogrammeengaged 577participantsincommunity-basedactivities.everybodyactivehasa pathwayexercisereferralschemewherebygpsandotherhealthcare professionalscanrefersuitablepatientstoleisurefacilitiesforfitness evaluationsandexerciseprogrammes.
theeverybodyactiveprogrammeaimstoincreasephysicalactivityin ordertobenefitthehealthofadultswithlearningdisabilities.
55 valuingpeoplenow:anewthree-YearStrategYforpeoplewithlearningdiSabilitieS
3.2� however,mostpeoplewithlearningdisabilitieshavepoorerhealththan therestofthepopulationandaremorelikelytodieatayoungerage. thereisclearevidencethattheiraccesstothenhSisoftenpoorand characterisedbyproblemsthatunderminepersonalisation,dignityand safety.atworst,reportshaveidentifiedabuse,undiagnosedillnessand, insomecases,avoidabledeath.
3.3� KeyissuesforthenhSare:
• achievingfullinclusionofpeoplewithlearningdisabilitiesinits mainstreamworkonreducinghealthinequalities;and
• ensuringhigh-qualityevidence-basedspecialisthealthservices.
3.4� theoverarchingpolicyrelatingtothehealthofallpeopleiscoveredin thefinalreportofthenhSnextStagereview.
‘The vision this report sets out is of an NHS that gives patients and the public more information and choice, works in partnership and has quality of care at its heart – quality defined as clinically effective, personal and safe. It will see the NHS deliver high quality care for all users of services in all aspects, not just some.’56
theforthcomingChildhealthStrategywillbeframedaroundthe government’svisionforchildrenandyoungpeople’shealthandwell-beingfor2020andwillarticulatetheworktodeliverthis.
3.5� anumberofreportsinrecentyearshavehighlightedthelowpriority andfocusgiventohealthandhealthcareforpeoplewithlearning disabilities:
• Equal Treatment: Closing the Gap57highlightedfailingsinaccess tohealthcareandprovidingappropriatetreatmentforpeoplewith learningdisabilities.
• Death by Indifference58describedthecircumstancessurroundingthe deathsofsixpeoplewithlearningdisabilitieswhiletheywereinthe careofthenhS.
56 High Quality Care for All: nhSnextStagereviewfinalreport www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_085825
57 Equal Treatment: Closing the Gap, disabilityrightsCommission(2006) 58 Death by Indifference,Mencap(2007)
56 Chapter3:havingalife
• A life like no other59foundthatadultswithlearningdisabilities areparticularlyvulnerabletobreachesoftheirhumanrightsin healthcare.
603.6� in2007,dhpublishedawide-rangingactionplan,Promoting Equality, torespondtotherecommendationsofthedisabilityrightsCommission report,withaparticularfocuson:
• promotingtheimplementationofannualhealthchecks,supported byaframeworktohelppCtscommissionenhancedprimarycare servicesforpeoplewithlearningdisabilities,includinghealthaction plansandstrategichealthfacilitators;
• pCtcommissioning:identifyingandspreadingbestpracticein commissioningservicesthatmeettheneedsofpeoplewithlearning disabilities,aspartofthewiderworldClassCommissioning programme;
• educationandtraining:workingwithregulatoryandeducation bodiestoaddresslearningdisabilityissuesaspartoftrainingfor healthcareprofessionals;
• informationandinformationsystems:ensuringthatlearningdisability isreflectedintheminimumdatasetforJointStrategicneeds assessmentsandinwiderworktoimproveequalitymonitoring acrossnhSservices;
• equalityassessmentofnewdhandnhSpolicies;and
• ensuringequitableaccesstoanduptakeofscreeningprogrammes.
3.7� thenhSoperatingframework2008/09requiredShas,pCtsand providertruststopursueserviceimprovementsanddeliveractionplans onremedyingshortcomingsinlearningdisabilityservices.Mostregions arenowusingaself-assessmentandperformanceframeworktohelp identifyprioritiesandtodevelopregionalandlocalactionplansto improvelocalhealthservices.61
59 A life like no other:anationalauditofspecialistinpatienthealthcareservicesforpeoplewithlearningdifficulties inengland,healthcareCommission(2007)
60 Promoting equality: Response from Department of Health to the Disability Rights Commission Report, ‘Equal Treatment: Closing the Gap’,departmentofhealth(2007)
61 Seetextboxonpage127
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Primary and acute healthcare
‘Martin, aged 43, went without food for 26 days whilst he was in hospital following a stroke. By the time staff realised what was happening, he was too weak to be helped. Martin died on 21 December 2005. He had severe learning disabilities and no speech.’
Martin’sfamilytoldhisstoryasoneofsixcaseshighlightedwithin Mencap’sDeath by Indifference report(2006)
It should be noted that the circumstances and complaints made by the families are still subject to judgement by the Ombudsman.
3.8� inresponseto Death by Indifference, thethenSecretaryofStatefor healthinvitedSirJonathanMichaeltoheadanindependentinquiryinto accesstohealthcareforpeoplewithlearningdisabilities.thereportof thatinquiry–Healthcare for All–waspublishedinJuly2008.theten mainrecommendationsofthatreport,andthedepartment’sresponses arebelow.thenhSChiefexecutivehasalreadywrittentochief executivesofShas,pCtsandprovidernhStruststoaskthemtosatisfy themselvesthatreasonableadjustmentsarebeingmade.thisstrategy providestheopportunitytodrawtogetherintoasingleprogrammethe actionthatthegovernmentwilltaketoaddresstheindependentinquiry recommendations,buildingontheexistingpromotingequalitywork programme.
58 Chapter3:havingalife
Healthcare for All–theindependent inquiryintoaccesstohealthcarefor peoplewithlearningdisabilitiesby SirJonathanMichael(2008)62
Leadership is essential to deliver policy effectively for vulnerable groups of society. People with learning disabilities are amongst the most vulnerable and many have some of the greatest health needs. Together, the evidence implies that ‘reasonable adjustment’ is needed to policy on devolution of decision making on healthcare to local level for people with learning disabilities. Current policy is failing this vulnerable group.
Response:weacknowledgetheroledhhastoplayinmakingthis apriorityforleadersacrossthenhS.thisresponsetotheinquiry formsanintegralpartofValuing People Nowandwillcontinueto beakeyelementofthedeliveryplan.thatdeliverywillbeledbythe newnationaldirectorsforlearningdisabilitiesandoverseenbythe directorofSocialCare,localgovernmentandCarepartnershipsand theMinisterforCareServices,whojointlychairthelearningdisability programmeboard.
theworkonthedetailedresponsetotheinquirywillbeledby across-departmentalgroup,chairedbythedirectorofprimary Careandwithrepresentationfromtheequalityandhumanrights Commission.thisgroupwillberesponsibleforoverseeingdelivery ofcommitmentsaroundmainstream(non-specialist)healthcare forpeoplewithlearningdisabilities,reportingregularlytothe programmeboard.
62 Healthcare for All: report of the independent inquiry into access to healthcare for people with learning disabilities,SirJonathanMichael,departmentofhealth(2008)
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RECOMMENDATION 1
Those with responsibility for the provision and regulation of undergraduate and postgraduate clinical training must ensure that curricula include mandatory training in learning disabilities. It should be competence-based and involve people with learning disabilities and their carers in providing training.
Response: weacceptthisrecommendation.weareworking througheducationcommissionersandeducationproviderstoreview andimprovetrainingprovidedforhealthcarestaff,inlinewithbest practice,toaddresstheneedsofpeoplewithlearningdisabilities. wewillencouragetheengagementofserviceusersandcarersinthe designanddeliveryofthistraining.wewillexpectShastoaccount tousattheyear-endtogiveappropriateassurancesthatthisisbeing takenforward.
wewillalsocontinueworkingwiththeprofessionalregulatory bodies,whoareresponsibleforsettingeducationalstandardsforthe healthandsocialcareprofessions,toagreewhatfurtherstepswe caneachtaketosupportimprovementsintraining.
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RECOMMENDATION 2
All healthcare organisations, including the Department of Health, should ensure that they collect the data and information necessary to allow people with learning disability to be identified by the health service and their pathways of care tracked.
Response:weacceptthisrecommendation.thedhpermanent Secretarychairsagroupresponsibleforensuringimprovementsin thedata,informationandinformationsystemsusedbythenhSto monitorequalityofaccesstohealthservicesandequalityofhealth outcomes.buildingonthiswork,wewillaskthenhSinformation Centretoworkwiththepublichealthobservatoryforlearning disability(seebelow)toidentifythepracticalchangesneededto:
• ensuremoresystematicrecordingoflearningdisabilitywithin generalpractice.thiswillbehelpedsignificantlybythenew directedenhancedServiceforannualhealthchecks,whichwill helpgppracticesensurethattheregisterstheymaintainunder theQualityandoutcomesframeworkreflectinformationfrom localauthorityregistersofpeoplewithlearningdisabilitiesknown toservices;
• developmoreconsistentsystemstoensurethatinformationis sharedwithotherhealthcareproviderswhengppracticesmake referralstootherservices–supportedbythereviewofdisability definitionscurrentlybeingundertakenbytheofficeofnational Statistics;and
• allowappropriatedatafromgppracticesystemstobecompared withdatafromothernhSsources(egtheSecondaryusesService) toallowbetteranalysisoftheuptakeofhealthcareinterventions andhealthoutcomesinrelationtopeoplewithlearning disabilities.
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RECOMMENDATION 3
Family and other carers should be involved as a matter of course as partners in the provision of treatment and care, unless good reason is given, and Trust Boards should ensure that reasonable adjustments are made to enable and support carers to do this effectively. This will include the provision of information, but may also involve practical support and service co-ordination.
Response: weacceptthisrecommendation.Valuing People Now recognisestheimportantrolethatcarersplayandtheimportanceof workinginpartnershipwiththemintheprovisionoftreatmentand care.thegovernment’snationalCarersStrategy,publishedinJune 2008,setsouthowcarersshouldbeincludedaspartnersincare.the strategyincludesacommitmenttoissueinformationprescriptionsto carersandtoenablecarerstoreceiveotherappropriateinformation, especiallyincaseswherementalcapacityisanissue.
thenationalCarersStrategyalsorecogniseshowtheadditionalstress ofcaringrolesmayaffectthecarer’sownhealth.itproposespiloting annualhealthchecksforfamilycarersandensuringregularaccessto shortbreakservicesandsupport.
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RECOMMENDATION 4
Primary care trusts should identify and assess the needs of people with learning disabilities and their carers as part of their Joint Strategic Needs Assessment. They should consult with their Local Strategic Partnership, their Learning Disability Partnership Boards and relevant voluntary user-led learning disability organisations and use the information to inform the development of Local Area Agreements.
Response: weacceptthisrecommendation.aspartoftheworld ClassCommissioningprogramme,weareworkingwithpCtstohelp identifyandspreadbestpracticeincommissioningservicestomeet theneedsofpeoplewithlearningdisabilities,includingbestpractice inneedsassessmentandinengagementwithserviceusers,families andcarers,andpartnershipboards.thisshouldformpartoftheJoint Strategicneedsassessmentsundertakenwithlocalauthoritiesand othercommunitypartners.
goodcommissioningincludesworkinginpartnershipwithhealthcare providers,forinstancethroughsystemsofstrategichealthfacilitation andacuteliaison,tohelpensurethatpeoplewithlearningdisabilities receivetimely,convenientaccesstothefullrangeofservicesneededto meettheirhealthneedsandthattheyreceivehigh-quality,personalised andjoined-upcareacrossprimarycare,communityhealthservicesand hospitalsettings.italsoincludesreviewingworkforcerequirements relatingtoprimaryhealthcarefacilitationandacutehospitalliaisonto helpensurethatreasonableadjustmentsaremade.
theminimumdatasetforJointStrategicneedsassessments,which theinquirycommended,includesindicatorsonthenumberof peoplewithlearningdisabilitiesresidentineacharea,thenumber inemploymentandthenumberinsettledaccommodation.the minimumdatasetalsoincludesanindicatoroncarers’assessments. thenumberofannualhealthchecksforpeoplewithlearning disabilitiesknowntolocalauthoritieswillalsonowbecollectedas partofthenhSvitalSignindicators.
dhrecommendsthecoredatasetasastartingpointforJoint Strategicneedsassessments.weencouragepCtsandlocal authoritiestoworkwithserviceusersandtheirfamiliesandcarers toidentifyadditionalinformationthatcaninformtheassessment.
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RECOMMENDATION 5
The Department of Health should raise awareness in the health service of the risk of premature avoidable death; and to promote sustainable good practice in local assessment, management and evaluation of services, the Department of Health should establish a learning disabilities Public Health Observatory. This should be supplemented by a time-limited Confidential Inquiry into premature deaths in people with learning difficulties to provide evidence for clinical and professional staff of the extent of the problem and guidance on prevention.
Response:weacceptthisrecommendation.weagreethatpCts,as commissionersofhealthservices,wouldbenefitfrombettersupport inassessingtheneedsofpeoplewithlearningdisabilitiesintheirlocal population,inassessinghowfartheseneedsarecurrentlybeingmet throughtheservicesavailable,andinunderstandingcomparative healthoutcomesforpeoplewithlearningdisabilities.
weagreethatapublichealthobservatorywouldhelppCtsembed bestpracticeintheseareas.wewillcommissionthisprogrammeof workeitherfromastand-alonepublichealthobservatoryorfrom oneoftheexistingpublichealthobservatories.
weagreethatatime-limitedConfidentialinquiryintopremature deathsinpeoplewithlearningdisabilitieswouldhelpimprovethe clinicalevidencebasethatshouldunderpincommissioningoflocal services.wearedevelopingaspecificationfortheinquiryand proposeinvitingproposalsfrompotentialorganisations.
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RECOMMENDATION 6
The Department of Health should immediately amend Core Standards for Better Health, to include an explicit reference to the requirement to make ‘reasonable adjustments’ to the provision and delivery of services for vulnerable groups, in accordance with the disability equality legislation.The framework that is planned to replace these core standards in 2010 should also include a specific reference to this requirement.
Response:weaccepttheaimofthisrecommendation.aspublic bodies,nhSorganisationsarerequiredbythedisabilitydiscrimination act1995tomakereasonableadjustmentstotheprovisionand deliveryoftheirservicestovulnerablegroups.
CoreStandardsforbetterhealthwillnolongerbeusedasthebasis forperformanceassessmentofhealthcareservicesoncetheCare QualityCommissiontakesovertheroleofthehealthcareCommission fromapril2009.however,thehealthcareCommissionisalready workingjointlywiththeCommissionforSocialCareinspectionand theMentalhealthactCommission,withaspecificfocusonmaking surethatthecommissioningandprovisionofservicesforpeoplewith learningdisabilitiesmeettheprovisionsofdisabilitydiscrimination andotherrelevantlegislation,includingthehumanrightsact1998.
wehaveincludedspecificprovisioninthehealthandSocialCare act2008tomakesuretheCareQualityCommissionisabletotake accountofallotherrelevantlegislation,includingthedisability discriminationact1995.
earlierthisyear,thedepartmentconsultedonahigh-levelframework fortherequirementsagainstwhichprovidersshouldbeassessedfrom 2010/11onwards.indoingso,wehavebeenparticularlymindfulof theneedsofvulnerablegroups.ourproposalsincludedrequirements thatproviderssafeguardpeoplewhentheyarevulnerableandthat theyassess,plananddelivercareinawaythatreflectspeople’s individualneedsanddiversity.wearecurrentlyanalysingand consideringtheresponsestotheconsultationandwillpublishthe government’sresponseshortly.oncethehigh-levelrequirements aresetinregulations,theCareQualityCommissionwilldevelop andconsultonthecriteriathatitwillusetoassesscompliancewith regulations.
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theCareQualityCommissionhasmadeitclearthatprotectingthe rightsofpeoplewhouseservices,particularlythemostvulnerable, willbeoneofitskeypriorities.wearethereforeconfidentthat itwillensurethatthecriteriaitdevelopswilltakeaccountofthe requirementsofthedisabilitydiscriminationact1995.
RECOMMENDATION 7
Inspectors and regulators of the health service should develop and extend their monitoring of the standard of general health services provided for people with learning disabilities, in both the hospital sector and in the community where primary care providers are located. The aim is to support appropriate, reasonable adjustments to general health services for adults with learning disabilities and their families and to ensure compliance with and enforcement of all aspects of the Disability Discrimination Act. Healthcare regulators and inspectors (and the Care Quality Commission, once established) should strengthen their work in partnership with each other and with the Commission for Equality and Human Rights, the National Patient Safety Agency and Office for Disability Issues.
Response: weacceptthisrecommendation.tostrengthenassurance ofequalitythroughoutthehealthandsocialcaresystem,dh will,fromapril2009,berequiringaccountableofficersofnhS organisationsandarm’slengthbodiestoprovideassurancethat theirorganisationiscomplyingwithequalitieslegislationthrough annualstatementsofinternalcontrol.Statementsofinternalcontrol arepublishedaspartofeachorganisation’sauditedannualaccounts.
wewillworkwiththenewCareQualityCommissiontohelpit totakeforwardthelessonslearnedfromthecurrentregulators’ workandtosupportthepartnershipapproachsetoutinthis recommendation.
inaddition,wewelcomethecommitmentoftheequalityandhuman rightsCommissiontoworkwiththeregulatoryagenciestoensurea coordinatedapproachtodeliveringchange.
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RECOMMENDATION 8
The Department of Health should direct primary care trusts (PCTs) to secure general health services that make reasonable adjustments for people with learning disabilities through a Directed Enhanced Service. In particular, the Department should direct PCTs to commission enhanced primary care services which include regular health checks provided by GP practices and improve data, communication and cross-boundary partnership working. This should include liaison staff who work with primary care services to improve the overall quality of healthcare for people with learning disabilities across the spectrum of care.
Response: weacceptthisrecommendation.dhhasrecentlyreached agreementwiththebritishMedicalassociation(bMa)tointroducea directedenhancedServiceforannualhealthchecksforpeoplewith learningdisabilitiesknowntolocalauthorities.thismeansthatall pCtsinenglandareunderadirectiontocommissionannualhealth checksfromgppracticesintheirareaandtoarrangeappropriate trainingforgpsandgppracticestaff.thesearrangementswill initiallyrununtil31March2010.thenumberofpeoplewithlearning disabilitiesknowntolocalauthoritieswhoreceiveannualhealth checkswillbeanewvitalSignsindicator.overthenextyear,we willworkwithgroupsrepresentingpatients,familiesandcarersand professionalgroupstoreviewtheeffectivenessofthesearrangements andconsiderimprovementsforthefuture.
gpsandgppracticestaffwillreceivetraininginmeetingthe needsofpeoplewithalearningdisabilityprovidedbyStrategic healthfacilitatorsorlocalCommunitylearningdisabilityteam staffinpartnershipwithself-advocatesandfamilycarers.weare alsopromotingthedevelopmentofpractitionerswithaSpecial interestinlearningdisability.thiswillbefocusedinitiallyongps andpharmacistsbutwehopeitwillexpandtoincludeother professionals,whocanthenserveasaresourcetootherhealth practitionersintheirarea.
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throughtherecentnhSoperatingframeworkfor2009/10,wehave reinforcedtheimportanceofsecuringgeneralhealthservicesthat makereasonableadjustmentsforpeoplewithlearningdisabilitiesand theneedforpCtstohavearrangementsinplaceforcommunication andpartnershipworkingtoimprovetheoverallqualityofhealthcare forpeoplewithlearningdisabilities.wewillworkwithShasto reviewtheprogressofpCtsinmakingimprovementsintheseareas.
RECOMMENDATION 9
Section 242 of the National Health Service Act 2006 requires NHS bodies to involve and consult patients and the public in the planning and development of services, and in decisions affecting the operation of services. All Trust Boards should ensure that the views and interests of people with learning disabilities and their carers are included.
Response: weacceptthisrecommendation.theoperating frameworkfor2008/09setouttheimportanceofclosepartnership workingbetweenpCtsandlocalauthorities,withaparticularfocus onpersoncentredhealthplansforpeoplewithlearningdisabilities. Valuing People NowrecommendedthatpCtsshouldberepresented onpartnershipboards.thestrengthenedroleofpartnershipboards shouldgivepCtsaccesstotheviewsofserviceusersandfamilies andcarers,tohelppCtstoassessneedsandreviewservicesand commissioningimprovementsinhealthandhealthcare.
theestablishmentoflocalinvolvementnetworks(links)inapril 2008providesakeymechanismtoimprovethecommissioning ofservicesforpeoplewithlearningdisabilities.linksprovide communitieswiththeopportunitytoinfluencehealthandsocialcare services–includingdisabilityservices–andgivecitizensthechance tohavetheirsayinamuchwiderrangeofways.
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RECOMMENDATION 10
All Trust Boards should demonstrate in routine public reports that they have effective systems in place to deliver effective, ‘reasonably adjusted’ health services. This should include arrangements to provide advocacy for all those who need it and arrangements to secure effective representation on PALS [Patient Advice and Liaison Services] from all client groups including people with learning disabilities.
Response: weacceptthisrecommendation.itisgoodpracticefor truststoshowexplicitlyhowtheyhaveadaptedtheirservicesto makethemaccessibletopeoplewithdisabilities.inaddition,itis goodpracticefortruststoincludefamilycarersandpeoplewith learningdisabilitiesasequalpartnerswithexpertise,whocansupport theseorganisationsinachievingthisobjective.
3.9� atanationallevel,therewillalsobeworktoensurethatthenhSfully respectsthehumanrightsofpeoplewithlearningdisabilities,including thefirstnhSConstitutionsettingouttherightsandresponsibilitiesofall individualsinrelationtothenhS.
3.10 dhisrunninga‘humanrightsinhealthcare’project.oneofthepilot sitesisthelearningdisabilitiesdirectorateinMerseyCarenhStrust. thissitehasproducedmaterialsincluding:
• ahumanrightsquestionnaireforin-patients;
• ahumanrightsbasedriskassessment;
• ahumanrightsbenchmarkingtool;
• ahumanrightsriskmanagementtoolforpCtsandtrustsinrelation topeoplewithmorecomplexneeds;and
• atrust-widehumanrightsstrategy.63
63 detailsoftheMerseyCarepilotmaterialsandotherresourcesonhumanrightsinhealthcarecanbefoundat: www.dh.gov.uk/en/Managingyourorganisation/equalityandhumanrights/humanrights/dh_088783
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exampleofgood practice
inStaffordshireandStoke-on-trent,pCtshaveinvestedineight primaryhealthcarefacilitators,providingonaverageonepostholder per150,000generalpopulation.allarelearningdisabilitynursesand areemployedwithinthepCtstoworkwithgppracticestoprovide support,trainingandtailor-maderesourcesforprimarycarestaffto enhancetheircapacityandabilitiestoprovidegoodqualityhealthcare topeoplewithlearningdisabilities.
‘For a person with a learning disability who finds it hard to communicate or struggles to understand things, it is really important that staff take time to listen to them, hear their views, explain things slowly and do simple things like cut up their food or feed them if necessary.’
nicolaSmith,formerCo-nationaldirectorforlearningdisabilities, takenfromanarticleinLearning Disability Today
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3.11 goodcommissioningneedstoaddressthequalityofhealthcareand supportprovidedacrossallhealthcaresettings.ashighlightedinDeath by IndifferenceandHealthcare for All,thereareparticularneedswithin acutegeneralhospitalstoensuretheeffectivenessofcarepathways andcommunication.acutehospitalliaisonstaffcanhelptoensure thatreasonableadjustmentsareidentified,thatsystemsofsupportare agreedandthathospitalstaffreceivetrainingtoimprovethequality ofhealthcarethatpeoplewithlearningdisabilitiesreceiveingeneral hospitals.
learningdisabilityacutehospital liaisonnurses
attheroyalSussexhospitalinbrighton,thelearning disabilityacutehospitalliaisonnursesareworkingboth withinthehospitalandinpeople’shomes.priorto admission,theyhelpwiththepreparationandplanning forhospitalbyusinghospitalbooksandcommunication aids,andbyliaisingwithfamilies.inthehospital,they coordinatethecarepathwaythroughadmissionand treatment;theywillalsoworkwiththedischargeteam toensureappropriatesupportisinplaceandwilloffer follow-upvisitsinthecommunitytohelpindividuals andtheirfamiliestounderstandnewhealthneedsor futuretreatment.
thenursesalsomanagesmallcaseloadstoprevent re-admissionofindividualswithchronicillnesses.
Specialist and mental health services
3.12 asmallbutsignificantnumberofpeoplewithalearningdisabilitywill requirespecialistsupportandtreatmentfromthenhS,providedby specialistlearningdisabilityservicesormentalhealthservices.people withalearningdisabilityaremorelikelytosufferfrommentalill-health thanthegeneralpopulation.however,weknowfromthehealthcare Commissionauditofspecialistservicesthatpeopledonotalwaysget theappropriateassessmentandtreatmenttheyrequiredeliveredinthe rightplace;andtoooftenpeoplecanbesenttoexpensiveoutofarea
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placements.inmanyplaces,peoplewithlearningdisabilitiesareunable toaccessmainstreammentalhealthservices,andthereisoftenpoor communicationandpartnershipworkingbetweenspecialistlearning disabilityservicesandmentalhealthservices.
3.13 Somepeoplewithlearningdisabilitiesandadditionalcomplexor profoundphysicaldisabilitieswillrequirehealthprofessionalsfrom mainstreamandspecialistlearningdisabilityservicestoworkin partnershipinordertousemedicaltechnologyandtoaccessessential therapeuticassessmentsandinterventionsfromnurses,physiotherapists, psychiatrists,psychologists,occupationaltherapists,speechtherapists anddieticians.Similarpartnershiparrangementsarealsoneededto ensurethatpeoplewithmorecomplexneedsgainaccesstothebest careandtreatmentinthefullrangeofhealthservices,frommaternity servicesthroughtoendoflifecare.
3.14 thenhSwillretainthefundingrequiredtorunappropriatespecialist healthservices.thenatureandsizeoftheseserviceswillneedtobe agreedbetweenthepCtandlocalauthority.goodpracticeguidance oncommissioningspecialistadultlearningdisabilityhealthserviceswas issuedin2007.64
3.15 peoplewithlearningdisabilitiesareentitledtothesupporttheyrequire toaccessmainstreammentalhealthservicesassetoutinthenational Serviceframework(nSf).thisnSfisforallpeoplewithmentalhealth needsofworkingage,includingpeoplewithalearningdisability.65 followingtheindependentreviewofChildrenandMentalhealth Services,anationaladvisoryCouncilforchildren’smentalhealth andpsychologicalwell-beinghasbeendeveloped.inaddition,the forthcomingnationaldementiaStrategywilladdresstheneedsof peoplewithalearningdisabilitytoensureinclusivecarepathways.
Offender health
3.16 researchbytheprisonreformtrust,No One Knows,identifiedthat 20–30%ofoffendershavelearningdifficultiesorlearningdisabilities thatinterferewiththeirabilitytocopewithinthecriminaljusticesystem. prisonworkers’learningdisabilityawarenesstrainingwillbeprovidedto allprisonsin2008/09.
64 www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_079987 65 www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_4009598
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3.17 pCtsneedtoworkwiththeirlocalprisonstoensurethatoffenders withlearningdisabilities,includingyoungoffendershaveaccesstoafull rangeofhealthcare,includingannualhealthchecksandhealthaction plans.
exampleofgood practice
inSouthampton,agroupofpeoplewithlearningdisabilitieswhouse mentalhealthservicesgotinvolvedandthoughtaboutthedifferent sectionsofthe‘greenlight’toolkit.66wehadaprojectworkerwho metwiththemandotherpeoplewithlearningdisabilitiesandtheir carersandcheckedthattheywerehappywiththereporthewrote.
thegroupthenco-ledthedayswhenwepresentedthefindingsto professionalsandtheyreceivedanawardfromthenationalinstitute forMentalhealth(england)fortheirworkinthelearningdisability andMentalhealthsection.thecriteriaforthiscategorywasforan initiative/innovationwhichdemonstratedpositivepracticebyaddressing thementalhealthneedsofpeoplewithlearningdisabilities.
thegroupisdevelopingleafletstoprovideinformationaboutmental healthandmentalillnessforotherpeoplewhouseservices.Members feedbackthattheycantalktoandhelpotherpeoplewithlearning disabilitieswhoareexperiencingmentalhealthproblems.theyfeel thatthegroupisawayofmakingsurethattheirexperiencecounts andthattheirviewsarelistenedto.itisawayofsupportingpeople tounderstandtheirillnessandtoreceiveinformationthatiseasyto understand.theysaythat,withtherightsupportandopportunities, peoplewithlearningdisabilitiesandmentalhealthproblemscan participateandcontributetoservicedevelopmentandimprovements.
Making it happen locally and regionally – key recommended actions
• Shas,pCtsandnhStrustproviderstoaddresstherecommendations inHealthcare for All andthegovernment’sresponse,particularlyin ensuringthatreasonableadjustmentsaremadetoallhealthservices toreflectthespecificneedsofpeoplewithlearningdisabilities.
66 http://valuingpeople.gov.uk/dynamic/valuingpeople146.jsp
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• partnershipboardsandpCtstoensurepeoplewithlearning disabilitiesandtheirfamilycarersarepartnersinimprovinghealthcare forpeoplewithlearningdisabilities.
• allrelevantbodiestofollowtheguidanceand/orusetoolkitsaround healthservicesforpeoplewithlearningdisabilities.thisincludesthe Specialist Learning Disabilities Commissioning Guidance2007and worldClassCommissioningguideforpeoplewithlearningdisabilities publishedalongsidethisstrategyandguidanceonmentalhealth, healthactionplanningandhealthfacilitation.
• pCtandnhStrustdisabilityequalityschemestoincludespecific actiontoaddresshealthinequalitiesfacingpeoplewithlearning disabilities.
• ShasandpCtstosupportlocalservicestoaddressgoodpracticefor localservices,asoutlinedinHealthcare for All.
• thenationaldirectorsandvaluingpeopleregionalteamswillensure thatlearningfromtheMerseyCarepilotsiteonhumanrightsin healthcareisdisseminated.
National level actions for government departments
• dhwillproduceguidanceforthenhSonthedisabilityequalityduty.
• dhwilldelivertheactionsoutlinedaboveinresponsetothe recommendationsin Healthcare for All oninformationsystems (recommendation2),apublichealthobservatoryfunctionand Confidentialinquiry(recommendation5),improvingregulation (recommendation6)andimprovingpCtcommissioningofservices (recommendation8).
• dhwillworkwithShastosupportpCtsincommissioningservices anddevelopingcarepathwaysinwaysthataddresstheneedsof peoplewithalearningdisability.
• dhwillworkwiththenhSConfederationtosupportthedeliveryof improvedhealthcareforpeoplewithlearningdisabilities,including thesharingofbestpractice.Commissioningandthequalityofacute serviceswillbeakeyfocustodevelopbetterunderstandingand improvedresponsefromthenhS.thiswillbepartofatwo-year jointprogramme.
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• dhwillworkwithprofessionalregulatorybodiesandeducation bodiestoensureawarenessoftheneedsofpeoplewitha learningdisabilityareincorporatedintotrainingforallhealthcare professionals.
• futuredevelopmentsinmentalhealthpolicyanddeliverywilladdress thementalhealthneedsofpeoplewithlearningdisabilities.
II. A home of your own
Overall policy objective: allpeoplewithlearningdisabilitiesandtheir familieshavetheopportunitytomakeaninformedchoiceaboutwhere, andwithwhom,theylive.
3.18 Manypeoplewithlearningdisabilities–unliketherestofthepopulation –donotchoosewheretheyliveorwithwhom.Morethanhalflivewith theirfamilies,andmostoftheremainderliveinresidentialcare.whilst undoubtedlyboththeseoptionssuitsomepeople,manyothersare deniedtheopportunitiesandchoicesthataretheirsbyright.residential careshouldcontinuetobeavailableforthosewhoactivelychooseit, butmoreemphasisneedstobeplacedonalternativewaysofproviding thehousingthatpeoplewant,andthesupporttheyneedtoliveinit.
People with learning disabilities
General population
• 50–55%liveinthefamily home
• 70%owntheirownhome
• 29%renttheirownhome • 30%liveinresidentialcare
• 15%renttheirownhome
3.19 peoplewithlearningdisabilitiesandtheirfamiliesneedtoconsider howtomatchtheiraspirations,bothinthelongandshortterms, withthedifferentsortsofhousingandsupportthatcanbemade available.atthesametime,thosewhoplanandcommissionservices shouldconsiderhowtheycoulddevelopcreativesolutionstomeeting thoseaspirations.possibilitiesincludepeoplewithlearningdisabilities beingsupportedtoliveintheirownhomeasownersortenants;being supportedtosharewithagroupoffriends;orlivinginresidentialcare.
3.20 livinginyourownhomedoesnotmeanlivingwithoutsupport,or beingover-dependentonhelpfromfamilymembers.thisisnotalways
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understoodandthemisunderstandingcancauseunnecessaryconcern andanxietytopeoplethemselvesaswellastotheirfamilies.
3.21 homeownershipandassuredtenancieshavetobematchedand coordinatedwithapackageofcarespecificallydesignedtosupportthe particularindividualinthehomeoftheirchoice.independentsupported livingcanbeenjoyedbypeoplewithveryhighorcomplexneedsas wellasthosewithfewerneeds,becausethesupportistailoredtotheir particularrequirements.thiswasidentifiedintheevaluationofdh’s extracarehousingpilotprogrammeforpeoplewithlearningdisabilities, A Measure of Success(CSip,2008).67
3.22 Somepeoplewithlearningdisabilitieswhohavetheirowntenanciesstill sometimesfindthattheirrightsastenantsareoverlookedorignoredon aroutinebasis.peoplewithlearningdisabilitieshavethesamerightsin lawasotherpeople.
3.23 peopleassessedandfundedasneedingnhScontinuingcarecanand shouldbesupportedtostayintheirownhomes,withintensivehealth inputasrequired.
3.24 pSa16(seetextboxonpage80)measurestheprogressinthenumbers ofadultswithlearningdisabilitiesknowntosocialservicesmovinginto settledaccommodation(ienotlivinginnhScampusesorresidential care).thisisadeliverypriorityforgovernmentandlocalauthorities.
3.25 Our Health, Our Care, Our Say68saidthatallnhScampusesshould closeby2010.in2007,dhannouncedathree-year£175million capitalfundtohelpdevelopappropriatehousingforpeopleleaving campusaccommodation.additionalrevenuefundingwillbeprovided: £96millionoverthethreeyearsto2010/11.
67 http://networks.csip.org.uk/independentlivingChoices/housing/topics/browse/learningdisabilities/ 68 Our Health, Our Care, Our Say, departmentofhealth(2006)
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publicServiceagreementpSa16
theSociallyexcludedadultspublicServiceagreementtarget(pSa16 target)wasannouncedinoctober2007aspartoftheComprehensive Spendingreview,andassuchisoneofgovernment’stop30priorities for2007–10.thepSaisledbytheCabinetofficeandownedjointlyby dh,dwp,Clg,dCSf,departmentforinnovation,universitiesandSkills (diuS)andtheMinistryofJustice.
evidenceshowsthatwithoutthefirmfoundationsofasettledhomeand job,themostdisadvantagedadultsriskalifetimeofsocialexclusionfor themselvesandtheirchildren,andpotentiallyplacealifetimecoston society.thegovernmentiscommittedtoensuringthatsociallyexcluded adultsareofferedthechancetogetbackonapathtoamoresuccessful life,byincreasingtheproportioninsettledaccommodationandin employment.
thepSafocusesonfourclientgroupswhoareparticularlyatriskof exclusion.whilethesegroupscanbehighlyvulnerable,theyarealsoin contactwithservicesthatcouldandshouldmakeadifference.theyare:
• youngadultsleavingcare;
• adultoffendersunderprobationsupervision;
• adultsreceivingsecondarymentalhealthservices;and
• adultswithlearningdisabilitiesknowntocouncils.
allofthepSaindicatorsarealsoincludedinthelatestlocalgovernment performanceframework.alllocalauthoritieshavetoreportonthem, andsomearesettingthemselvesspecificimprovementtargetsthrough thelocalareaagreementprocess.
3.26 housingrelatedsupport,throughtheSupportingpeopleprogramme, alreadyhelpsmanypeoplewithlearningdisabilitiestoliveintheir ownhomethroughtheprovisionofhousingrelatedsupportservices. peoplewithlearningdisabilitieswillcontinuetobenefitfromlocally plannedanddeliveredhousingrelatedsupporttohelpindividualslive asindependentlyaspossible.theSupportingpeopleoutcomessetisa measurementtooldesignedtotesttheeffectivenessofhousingrelated supportservices.itprovidesallserviceusers,includingpeoplewith learningdisabilities,withtheopportunitytodecide,incollaboration
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withtheirserviceprovider,whichoutcomestheirsupportservicesshould bringaboutforthem.
3.27 thehousingCorporation’s2008–11nationalaffordablehousing programmehasallocatedover£340millionforthedevelopmentofnew supportedhousing.itssuccessoragency,thehomesandCommunities agency,isworkingcloselywithdhtoidentifyfuturecapitalinvestment opportunitiestodeveloparangeofsocialhomeownershipoptionsfor peoplewithlearningdisabilities.
3.28 thegovernmentrecognisesthat,forsomepeople,housingdesignand managementlinkedtotheirdisabilitymightincreasecostsabovethe localnorm.whatisrequiredisafundingarrangementthatdoesnotput people’shousingsecurityatrisk,isbasedonanassessmentofindividual needandreasonablenessandachievesbestvalueintermsofavailable housingforpublicexpenditure.dwpiscommittedtoreviewingthe housingbenefitregulationsinthelongerterm,andintheshorttermis producingguidancetohousingbenefitofficers.
Making it happen locally and regionally – key recommended actions
• JointStrategicneedsassessmentstoidentifythehousingneeds ofpeoplewithlearningdisabilitiestoinformstrategicplanning, includingthenumberofpeoplewithlearningdisabilitieslivingwith familycarersover70andthosewithcomplexneeds.
• localauthoritiestofacilitatepeople’saccesstohousingoftheir choiceincluding:
– morepeoplereceivingpersonalbudgetsanddirectpaymentsto increasetheirchoiceandcontroloverwheretheyliveandwith whom;
– localauthoritycaremanagerstohaveanincreasedfocusonhome ownershipandassuredtenanciesasamodelforhousingand support;and
– throughpersoncentredplanning,workwithpeoplestillliving withfamiliestoestablishifthatistheperson’spreferredoption andtoinstigateplansaccordingly.
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• alllocalauthoritiesarealreadyrequiredtoproduceahousing strategyreflectinglocalpopulationhousingneeds,includingthoseof peoplewithlearningdisabilities.governmentofficestoensurethat alllocalauthoritieshaveanappropriatehousingstrategy.
• whereverpossible,transitionplansandyear9reviewstoaddress futureaccommodationchoices.
National actions for government departments
• thegovernmentiscommittedtodeliveringthepSa16objectiveon settledaccommodationandwillpublishadeliveryplanforthisby summer2009.
• Clganddhwillsetupaprogrammeofwork,beginninginearly 2009,toconsiderhowmainstreamhousingpoliciescanbestbe madeinclusiveofpeoplewithlearningdisabilities.
• dhanddwpwillworktogethertoaddressissuesaroundhousing benefitandsupport.
• dhwillmakecapitalandrevenuefundingavailabletopCtsandlocal authoritiestohelpfacilitatetheclosureofthenhScampuses.
• CareServicesefficiencydivision(CSed)willundertakeaprogramme ofworkstartingin2009/10tosupportamarketshifttowards movingpeoplefromresidentialcareintosupportedliving.
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III. Work, education and getting a life
Overall policy objectives: allpeopleandtheirfamiliestohavea fulfillinglifeoftheirown,beyondservices,thatincludesopportunities towork,study,andenjoyleisureandsocialactivities.thisincludes supportingmorepeoplewithlearningdisabilitiesintopaidwork, includingthosewithmorecomplexneeds.
3.29 peoplewithlearningdisabilitieswanttoleadordinarylivesanddothe thingsthatmostpeopletakeforgranted.theywanttostudyatcollege, getajob,haverelationshipsandfriendships,andenjoyleisureandsocial activities.Manypeopleneedsupporttodothesethings;andsomewill needhighlevelsofsupportonanongoingbasisaswellasmulti-agency investmenttohaveanykindofmeaningfullife.experiencehasshown thatmoreopportunitiescanbeachievedforpeopleifservices:
• workinclosepartnershipwithfamiliesaswellasotherservicesand linkintobroadercommunitydevelopmentsthroughlocalStrategic partnerships(lSps)andlocalareaagreements(laas);
• thinkbeyondnine-to-fiveworkingdaysandincludeeveningsand weekends;
• seeplanningforemploymentasakeyobjectiveinpersoncentred plans,includingpersoncentredtransitionplans;
• recognisetheimportanceofworkingwithschoolsandcollegesto ensureapositivetransitiontoadulthoodforyoungpeople;
• recognisetheimportanceofplanningforpeoplewhoarepastthe retirementageandmaywantthingsotherthanwork;
• investinmakingcommunity-basedfacilitiesandsettingsthatare accessibleforall;and
• developaclearde-commissioningstrategythatshowshowmoney willbedrawndownfromtraditionalservicesandre-investedinwider opportunities.
3.30 however,employmentlevelsforpeoplewithlearningdisabilitiesremain low,withlessthan10%ofpeopleknowntoservicesinpaidworkand veryfewofthemworkingmorethanafewhoursaweek.
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3.31 accesstopost-16educationhasbeenaproblembecauseofpriority beinggiventoyoungpeopleandachievingleveltwoqualifications, whichexcludespeople,especiallythosewithmorecomplexneeds. thishasmeanttheendofanyfurthereducationopportunitiesfor somepeople,ratherthanthestartofimprovednewones.
3.32 familiesandyoungpeoplehavesaidthattransitionplanningdoes notsupportthemwellforthemovetoadulthood.Manyyoung peoplearenotachievingthesameoutcomesasotheryoungpeople– ieaneducation,ajob,friendsandagoodsociallife.
Transition
3.33 thegovernmentiscommittedtosupportinglocalauthoritiesandpartner agenciesdevelopapersoncentredapproachtothestatutorytransition planningprocess.
3.34 tohelpdeliverthepromiseinthenSfforChildren,familiesand MaternityServices,thepersonCentredtransitionprogrammeledbythe valuingpeopleteamhasbeenintroducingpersoncentredapproaches intothestatutorytransitionplanningprocess.parentsandyoungpeople saythattheyfeelinvolvedforthefirsttimeandoutcomesforyoung peoplearebeginningtochange.thefurthereducationsectorisnow adoptingthisapproachinsomeareas.
‘Conducting Alex’s meeting in this way made a real difference to both Alex and myself; instead of feeling let down, anxious and on the side line, we felt included, listened to, and I really felt part of a big team, working together to give Alex the best future possible. Alex was also much happier in school because he had been listened to and all of his worries and concerns were addressed and understood. In fact, everyone who attended this meeting found it to be much better, more informative and a fun way of conducting reviews, which really include the child.’
amumwhosesonhadapersoncentredreview
3.35 Aiming High for Disabled Childrenannouncedfundsof£19million forthetransitionSupportprogramme(tSp)untilMarch2011.the programmeisbeingdesignedtoimproveprocessesforsupporting disabledyoungpeoplethroughtransitiononthegroundinlocalareas,to helpensurethatallareasmeetatleastminimumstandardsofprovision andwithmanyareasachievinggoodpracticeintransitionsupport.
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3.36 thedCSfhascontractedwiththeCouncilfordisabledChildrenandits partnersworkingasthenationaltransitionsupportteamtocoordinate activityandmaximisetheimpactofthetSpinlocalareaslinkingwith existingregionaladviserteams.theobjectivesofthetSpare:disabled youngpeopleandfamiliesareabletoreportimprovementsintheir experienceof,andintime,improvedoutcomesfrom,transition;the processestosupporttransitionimprovenationally;supportfortransition providedbylocalareasismoreconsistent;andlocalauthorities,pCts andschoolsshowincreasedexpertiseintransition.
3.37 inoctober2007,dCSfanddhjointlypublishedA transition guide for all services,69 writtenbytheCouncilfordisabledChildren.thisprovides anoverarchingviewofalltheservicesthatneedtoworktogetherto ensureappropriatesupportfordisabledchildrenthroughouteachstage oftheirlife.
3.38 infebruary2008,dhanddCSfpublishedTransition: moving on well, A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability.70thisestablishedanetworkofhealthprofessionalchampions whowillpromotegoodtransitionplanninginpartnershipwithother agenciesandyoungpeopleandfamilies.dhwillcontinuetopromote theintroductionofpersoncentredplanningapproachesintothe statutorytransitionplanningprocess.
Post-16 education
3.39 inJune2007,thethendepartmentforeducationandSkills(nowdiuS anddCSf)publishedProgression Through Partnership,ajointstrategy withdhanddwp.thisstrategysetoutafive-yearprogrammeof changewhichincludes:
• startingfromthepositionthatpeoplewithlearningdisabilitiescan learn,benefitfromlearningandshouldprogresstopaidemployment;
• improvingtheexperienceandqualityoftransitiontoadulthood;
• ensuringthecurriculumfollowedbylearnersishighquality,canbe accreditedandprovidespositiveoutcomes;and
• improvingtheclarityandflexibilityoffundingtosupportlearning, basingthisonapersoncentredplanningapproachtothetask.
69 www.everychildmatters.gov.uk/_files/transitionguide.pdf 70 www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_083592
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3.40 from2010,thelearningandSkillsCouncilwillceasetoexist; responsibilityfortheplanning,commissioninganddeliveryofthe furthereducationsystemwillpasstolocalauthorities.fundingforthe sectorwillpasstolocalauthoritiesviatwonewagencies:theYoung personslearningagency(covering16–19)operatedbydCSfandthe Skillsfundingagency(covering19+)operatedbydiuS.forlearners withlearningdifficultiesand/ordisabilities,localauthoritieswillretain responsibilityforfull-timelearnersuptotheageof25,toensure continuityofsupportandprovision.thesenewarrangementswill besubjecttolegislationin2009.
3.41 from2010,thefoundationlearningtierwillbeintroduced.thisisa qualificationandcurriculumframeworkwhichwilloffernewpathways givingrecognitiontoalllearningofferedbelowlevel2.learnerswillbe abletofollowcourseswhichofferaccreditationfortheirlearningwhich canbefollowedatapacesuitedtotheirneedsandtalents.withan emphasisonemployabilityskills,theframeworkwillprovidepreparation forindependentliving.thefoundationlearningtierisanall-age framework,solearningcanbepickedupthroughoutlife.thismaywell beofconsiderablehelptothosewhoneedtopickuplearningagainor needtoconsiderre-training.
3.42 dhwillcontinuetoworkwithdCSf,diuSanddwptofullyimplement progressionthroughpartnership,includingensuringthatmeaningful andrelevantlearningopportunitiesareaccessible,andthatimminent changestothefundingofallpost-16educationbenefitallpeoplewith learningdisabilities.
Employment
3.43 workdefinesus:whatwillyoubewhenyougrowup?whatdoyoudo foraliving?thesearequestionsweallfacefromotherswhenpeople wanttogettoknowus.buttheyarequestionsseldomdirectedtowards peoplewithlearningdisabilities.becausesofewpeoplewithlearning disabilitiesdowork,thereisnoexpectationfromothersthattheycan, andconsequentlylittleisdonetoofferthemtheopportunity.
3.44 pSa16providesthedeliveryagreementandperformanceindicators aimedatgettingmoreadultswithlearningdisabilitiesknowntocouncils intopaidemployment.apriorityforValuing People NowandthepSa deliveryplanwillbethecross-governmentstrategyonemploymentof peoplewithlearningdisabilitieswhichwillbepublishedinspring2009.
83 valuingpeoplenow:anewthree-YearStrategYforpeoplewithlearningdiSabilitieS
implementingthisstrategywillbeapriorityforgovernmentdepartments andtheirdeliveryagents,andinnovativepracticeneedstobeshowcased tochallengetheassumptionsthatpeoplewithmoderatetosevere learningdisabilitiescannotwork.
3.45 thebiggestchallengeforthestrategywillbetohelppeople,their carers,andthestaffandservicesthatsupportthemtobelievethat workisagenuinepossibility,whentheyseefewexamplesofitin practice.theevidencefromsomepartsofboththeuSaandtheuKis thatevenpeoplewithmorecomplexneedscanbesupportedtowork successfullyinpaidjobs.buttoachieveit,thebeliefhastobethere,and theexpectationbuiltintoschools,colleges,andadultsocialcareand employmentservices.thiswillrequiresomefundamentalchangesinthe wayalltheseservicesworkandinteractwitheachother.
3.46 thekeythemesinthedevelopingemploymentstrategywillbe:
1. thepresumptionofemployability.withoutthebeliefthatpeople canwork,theevidenceisthattherightinformation,coachingand supportthatisrequiredtohelppeoplegetjobswillnotbeputin place.
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2. apersoncentredpathway,focusedongettingindividualpeople ajob,thatstartsearlyinschoolsandcontinuesintoadulthood. thiswillrequiretheidentificationofa‘leadprofessional’tomake sureithappensandisimplementedbyconnectingthemtothe deliverychain.
3. accesstothecustomisedemploymentthatisnecessarytomake suretheperson’semploymentneedsareworkedonindepthand matchedtoanindepthanalysisoftheemployer’sneeds.
4. thebraidingoffundingstreamsfromdifferentservices,using individualbudgets,toensuremaximumcost-effectivenessand flexibilityinthedeliveryofappropriateindividualjobcoaching,job developmentand,wherenecessary,long-termjobsupport.
5. engagementwithemployersatalocallevel,toidentifytheirneeds, demonstratetothemthebusinesscaseforemployingpeopleandget theirsupportinraisingexpectations.
3.47 employmentisnottheresponsibilityofanysingleserviceordepartment. thestrategywillonlysucceedifthereisasharedexpectationthat morepeoplewithlearningdisabilitiescanandwillwork,andifthe adjustmentsaremadeinthewayservicesworktogethertoachievethis.
3.48 theemploymentstrategywillbuildonthecommitmentsalready announcedintheSocialMobilitywhitepaperNew Opportunities,71to pilotasupportbrokerroletohelppeopleusetheirindividualbudgets foremploymentsupport,embedsupportedemploymentinthenew foundationlearningtier,consideremploymentawarenesstrainingfor familycarersandexpandthegettingalifedemonstrationprogramme toeveryregion.
‘We are clear that the new specialist disability employment programmes must meet the specific needs of those furthest from the labour market. We recognise that those with moderate to severe learning disabilities, for example, may need specialist support; and may need this support to continue at some level for as long as the individual is in work. We are clear that the new contracting arrangements must allow for this specialist provision.’
welfarereformgreenpaper,July2008
71 New Opportunities: Fair chances for the future,Cabinetoffice,Cm7533(2009)
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3.49 thegreenpaper No one written off: reforming welfare to reward responsibility(dwp,July2008)72announcedadoublingoftheaccess toworkbudget,to£138millionby2013/14toenabledwptoexpand thereachoftheprogramme,andtohelpmoreemployersandmore disabledpeopleseekinghelptostartand/orretaintheirjobs.dwpwill pressaheadwiththeproposedreformtointroduceasingleprogramme thatsupportsdisabledpeoplewhohavecomplexbarrierstofinding andstartingwork.thiswillbringthecurrentJobintroductionScheme, worKStep,andworkpreparationbudgetstogethertocreatea seamlessemploymentprogrammewhichwillhelpthosefurthest fromthelabourmarket–includingpeoplewithlearningdisabilities– intowork.
3.50 thecross-governmentGetting a Life programmeisworkingwith10 demonstrationsitestoachieveanintegratedassessmentanddecision-makingprocessthatwillallowpeopletousepublicresourcesflexibly togettheoutcomestheywant,whichwillincludeaccesstopaid employmentopportunities.theinitialfocusoftheworkwillbeon youngpeoplegoingthroughtransition.Siteswilldemonstrategood practiceinrelationtohelpingyoungpeoplewithlearningdisabilities toachievepaidemploymentandfulllives,andtoinformgovernment ofbarriersandsolutions.learningfromtheprogrammewillbeshared quicklysothatotherpartsofthecountrycantakeonnewideasatan earlydate(seetextboxonpage90).
3.51 theCivilServicerecognisesthatitalsoneedstoleadbyexamplein employingmorepeoplewithalearningdisability.dhisleadingawork programmetoincreasethenumberofadultswithlearningdisabilities employedinthenhS.
72 www.dwp.gov.uk/welfarereform/noonewrittenoff/
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gettingalife
Getting a Lifeisathree-yearcross-governmentprogrammethataims toidentifywhatneedstohappeninordertoensurethatyoungpeople withseverelearningdisabilitiesleaveeducationandgoontoachieve paidemploymentandfulllives.
gettingalifereceivessupportandfundingfromdCSf,diuS,dwp,odi anddh.
thereare10demonstrationsites:norfolk,SoutheastStag(Strategic transitiongroup)withKentandMedway,richmond,Somerset,roC withtorbay,herefordshire,oldhamandManchester.
thesiteswillworkwithapproximately30youngpeopleaged14–25 whohaveseverelearningdisabilities.eachdemonstrationsitehasa multi-agencyprojectteamthatincludesyoungpeopleandtheirfamilies alongsideseniordecisionmakersfromschools,colleges,childrenand adultservicesinlocalauthorities,Jobcentreplus,Connexions,learning andSkillsCouncilandsupportedemploymentagencies.
thegettingalifeprogrammewill:
• identifyanddemonstrategoodpracticeinrelationtoenablingyoung peoplewithseverelearningdisabilitiestoleaveschoolorcollegeand gointopaidemploymentandhavefulladultlives;
• explorehowtobringtogetherassessmentandfundingstreamsfrom thefourdifferentnationalandlocalpolicyareas(Specialeducational needsassessmentandtransitionplanning,Connexions,learningand SkillsCouncilandpost-16education,Jobcentreplusandadultsocial careassessmentandresources)sothatyoungpeoplecanusepublic resourcesflexiblytogettheoutcomestheywant;
• informgovernmentaboutwhatworksandwhatneedstochangeat apolicylevel;
• developalearningcommunitytogathergoodpracticeandtoshare thiswidely;and
• supportthesitestoworkwithapproximately30youngpeopleaged 14–25whohaveseverelearningdisabilities.
undertheSocialMobilitywhitepaperNew Opportunitieswewillextend thegettingalifeprogrammetoallnineregionsbyaddingtwomoresites.
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Making it happen locally and regionally – key recommended actions
• allpartnershipboardstoensurethatby2012allyoungpeoplewith statementsofSpecialeducationalneedwhohavelearningdisabilities havepersoncentredreviewsfromage14to19thatactivelyinvolve theyoungpersonandtheirfamily.
• valuingpeopleregionalteamwillworkwiththetransitionSupport programmetosupportalllocalareastoachieveminimumstandards intransitionplanningandsupport.
• alltransitionplansandyear9reviewswhereappropriatetocontain asectiononhealthneedsandstartthedevelopmentofahealth actionplan.
• everylocalareatohaveamulti-agencyemploymentstrategy,linked topSa16.
• partnershipboardstomakesurethataccesstothepost-16 educationandtrainingsectorisfullyincludedinthelocalstrategyfor responsibilitiesreturningtolocalauthorities.
• therewillbeatransitionleadineveryregionwhowillsupportthe deliveryofaregionalmulti-agencytransitionstrategy,supportedby animplementationgroupinvolvingallkeystakeholders,inparticular youngpeopleandtheirfamilies.
National level actions for government departments
• across-governmentstrategyontheemploymentofpeoplewith learningdisabilitieswillbepublishedinspring2009.
• thenationaldirectorswillappointnationalleadsfortransitionand employment.theywillworkcloselywithdCSfanddwpandwill leadprogrammesofworktoidentifytheadditionalsupportsand facilitiesthatmayberequiredtobuildcapacityandcapabilityto enablelocalservicestodeliverobjectives.akeyactivitywillbeto ensurestronglinkagesbetweentheworkaroundpost-16education andemployment,sothattransitionreviewsfocusonemployment opportunitiesandappropriatetrainingforyoungpeopleleaving school.
• dhanddCSfwillworktogethertoensurethatAiming High for Disabled Children andthetransitionSupportprogrammewillsupport localareastoimprovetheirtransitionsarrangementsandconsolidate personcentredapproaches,workingcloselywithadultsocialservices.
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• dhanddCSfwillpublishjointguidanceforschools,colleges,local authoritiesandlocallearningandSkillsCouncilsonpreparingforthe changestofundingarrangementsandsystemsareinplacetodeliver thevisionofsocialinclusionaspartofthedeliveryofProgression through Partnership.
• thenationaldirectorswillcontinuetoleadandmanagethegetting alifeprogramme,andensurethatthelearningiscapturedand disseminatedtoinformpolicyandpractice.
• thecross-governmentwork,educationandlifeworkinggroupwill leadimplementationofthecross-governmentemploymentstrategy andwilloverseethegettingalifeprogramme.
• thenationaldirectorswillliaisewiththeofficeofthethirdSector toensurethatvolunteeringopportunitiesareopentopeoplewith learningdisabilities.
• dhwilldevelopandtestasupportbrokerroleasaleadprofessional foradultswithmoderatetoseverelearningdisabilities.Support brokerswillbeintroducedinanumberofareasfromSeptember 2009.theirsuccessinensuringthatarangeofclientneedsare addressed,andhousingandemploymentoutcomesareimproved, willbeevaluatedthroughto2011.
IV. Relationships and having a family
Overall policy objective:peoplewithlearningdisabilitieshavethe choicetohaverelationships,becomeparentsandcontinuetobe parents,andaresupportedtodoso.
3.52 likeeveryoneelse,peoplewithlearningdisabilitiestellusthat relationshipsareimportanttothem,bothfriendshipsandrelationships ofapersonalandsexualnature.Yettheevidenceisthatpeoplewith learningdisabilitieshaveveryfewrelationshipsandlimitedopportunities toformorsustainthem.peopleareoftenlonely.oneofthereasons forthisistheirexclusionfromthekindsofplaceswhereotherpeople formandmaintainrelationships,suchaswork,college,clubs,placesof worship,leisurecentres,etc,butthereareotherreasonsforthis,mostly basedonassumptionsaboutpeoplewithlearningdisabilities.
3.53 therighttomarryorhaveacivilpartnershipisbothacivilandhuman right;localsystemsshouldenablepracticethatsupportstheindividual’s choicewithregardtoformingandsustainingrelationships.
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3.54 Supportingpeoples’rightstohaverelationshipsismostlyabout challengingstereotypesandchangingattitudes.Somespecificreasons forwhypeoplewithlearningdisabilitieshavelimitedrelationshipsare:
• thewayinwhichprofessionalstakedecisionsaboutservicedelivery thatignoreexistingrelationshipsandbreakupfriendshippatterns, egwhenpeoplearemovedfromoneservicetoanother;
• insufficientconsiderationbeinggiventopersonalrelationshipsin individualplanningandcaremanagementprocesses;
• servicesgettingthebalancewrongbetweenprotectingvulnerable peopleandhelpingpeoplehavealife:positiverisktakingshouldbea partofeveryone’slife,includingthosewithmorecomplexneeds;and
• manypeoplestillnotrecognisingandacceptingthatpeoplewith learningdisabilities,likeanyoneelse,wantandneedpersonaland sexualrelationships.
Making it happen locally and regionally – key recommended actions
• valuingpeopleregionalleadswillworkwithpartnershipboardsto supportlocalservicecommissionersandproviderstodevelopsystems andprocesseswhichwillenablepeoplewithlearningdisabilitiesto buildandsustainrelationships.
National level actions for government departments
• thenationaldirectorswillworkwithCSCi(andsubsequentlythe CareQualityCommission)toaddresstheroleofregisteredcare servicesinsupportingpeopletodevelopandsustainrelationships, includingsexualrelationships,increasingaccesstomainstreamleisure andrecreationalservices,andsupportingpeopletokeepincontact withtheirfriendsandfamilies.
• thenationaldirectorsandvaluingpeopleregionalteamwillproduce toolkitsforhealthandsocialcareprofessionalsaboutpromotingsafe relationshipswithinthelawsofsafeguardingandhumanrights.
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V. Parents with a Learning Disability
3.55 valuing People highlightedtheneedforservicestosupportparents withalearningdisability.evidencesuggeststhatsuchparentsdonot getsufficientaccesstosupport,puttingfamiliesatriskofenforced separation.indeed,suchparentsareatadisproportionateriskoflosing theirchildrenintocare.
3.56 weneedtodomoretomakesurethatadults’andchildren’sservices workmoreeffectivelytogethertoimproveidentificationoffamiliesthat needextrasupportandcarryoutmoreeffectiveassessmentsoftheir needstoensurethatfamilieswithcomplexneeds,includingparents withlearningdisabilities,receivetherightlevelofsupportatanearlier stage.Think Family: Improving the life chances of families at risk73,set outavisionforanintegratedsystemwhichlooksatcircumstancesof thewholefamilyenablingthemtointerveneandprovidesupportmore consistentlybyintroducingbettersystemsforidentifyingandengaging familiesandimprovinginformationsharingbetweenserviceproviders. wehavebeguntoimplementthisvisionthroughthefamilypathfinders, andwewilltakelearningfromtheseprojectsandworkwithalllocal authoritiestoimplementbetterintegratedadults’andchildren’sservices inalllocalauthorities.
3.57 theparentingimplementationproject(pip)isworkingwithanumber oflocalauthoritiestodevelopgoodpracticeinrelationtothe commissioningandimplementationofparentingandfamilysupport services.thisgoodpracticeandlearningwillbesharedmorewidelywith otherlocalauthoritiestosupportthemindevelopingservicesthatcan meetthediverseneedsofallparentsintheirarea.
3.58 aspartoftheproject,somelocalauthoritiesaredevelopingresources whichwillsharegoodpracticearoundjointworkingwithadultservices tobestsupportvulnerableparents.wearealsodevelopinggood practicearoundthetraininganddevelopmentofthechildren’sand parentingworkforcetoenablethemtorecogniseandsupportthe varyinganddiverseneedsoffamilies.wehavehelddiscussionswith theselocalauthoritiesandstakeholdersabouttheneedsofparentswith disabilities,includingthosewithlearningdisabilities.thisdebatehas supportedthedevelopmentoftheparentingimplementationproject projectsandinformedpolicydevelopmentinthisarea.
73 Think Family: Improving the life chances of families at risk.Cabinetoffice(2008)
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3.59 wearealsoworkingmorewidelywithlocalauthoritiestobuildcapacity todeveloprobustneeds-basedstrategieswhichwillenablethemto supportvulnerableparents,includingthosewithlearningdisabilities.
3.60 Putting People Firstidentifiessupportingdisabledpeopletosustaina familyunitasoneofitsoutcomes.thegovernmenthasasignificant programmeofworkaimedatsupportingparentsgenerally,anda rangeofinitiativesaimedatgroupsofparentsexperiencingparticular difficulties.theseinclude:
• familyinterventionprojects(dCSf);
• workwiththeWorking Together with Parents Network74 (dh)to developgoodpracticeguidanceforcommissionersofadultsservices;
• disseminationofthejoint Good practice guidance on working with parents with learning disabilities(dfeSanddh,2007).75
3.61 itisimportantthatrelevantprofessionalshavetrainingintheeffective implementationofthisjointguidance,anddCSfwillbeworking closelywithlocalauthoritiesandgovernmentofficestoensurethat frameworksareinplaceforthistohappen.
3.62 theSocialCareinstituteforexcellence(SCie)76hascarriedouta knowledgereviewanddevelopedaresourceguideforjointworking acrosschildren’sandadultservicestosupportdisabledparents.
3.63 Moreneedstobedonetoensurethatparentswithalearningdisability receivesupportandbenefitfromallmainstreaminitiativesaimed atparents.researchevidencehighlightstheneedforindependent advocacywhenparentswithlearningdisabilitiesareatrisk.parents withlearningdisabilitiesalsoneedtohaveaccesstothesamelevelof informationandadviceavailableforallparents.
74 workingtogetherwithparentsnetwork–seewww.bristol.ac.uk/norahfry/right-support/ 75 www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_075119 76 www.scie.org.uk/publications/guides/guide19/index.asp
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JointCommitteeonhumanrights
theissueofparentswithlearningdisabilitieshavingaccesstoa familylifewiththeirchildrenwasafar-reachingfeatureofthe JointparliamentaryCommitteeonthehumanrightsofadultswith alearningdisability(2008).theCommittee’sreport,A Life Like Any Other?,reinforcedthat,unlessjustifiedasaproportionateand necessaryresponsetoarisktothechild,ortoothers,compulsory removalofachildfromthecareofitsparentsposesasignificant infringementoftherightsofboththechildanditsparentsrespect fortheirfamilylifeunderarticle8oftheeuropeanConventionon humanrightsandthehumanrightsact1998.thereportstated thatiftherecommendationsinthejointGood practice guidance on working with parents with learning disabilities(dfeSanddh, 2007)wereimplementedeffectively,itwouldsignificantlyreduce theriskthatparentsandtheirchildrenwouldbeseparatedin breachoftheconvention.
3.64 theChildren’splanpublishedindecember2007setoutanewgoalthat by2020parentswouldbesatisfiedwiththeinformationandsupport theyreceive.thegovernmentiscurrentlyconsideringhowprogress towardsthisgoalmightbemeasuredatanationallevelinawaythat takesaccountofthedifferentperspectives,experiencesandneedsof differentgroupsofparents.
‘They explain things in words you don’t understand and you think help I don’t understand what she’s saying and you ask her to say it again and she uses the same language and I feel really stupid because I still don’t understand but I don’t feel I can ask her to say it again.’
parentwithalearningdisability,Good practice guidance (dfeSanddh,2007)
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Making it happen locally and regionally – key recommended actions
• allrelevantbodies(pCts,las,etc)toensurethattheyareusing accessibleinformationwhensupportingparentswithalearning disabilityandthattheirservicesareaccessible,asrequiredby disabilitydiscriminationlegislation.
• localauthoritiestousepersonalbudgetsanddirectpayments tosupportparentswithalearningdisabilityaspartoftheir transformingSocialCarestrategies.
• alllocalauthoritiesworkingwithdCSftoimplementThink Family reformstomakesurethatadults,andchildren’sservicesunderstand howtosupportfamiliesexperiencingdifficultiesanddeliverajoined upservice.
National level actions for government departments
• thenationaldirectorswillworkwithallrelevantgovernment departmentstoensurethatallinformationforparentswitha learningdisabilityisavailableinaccessibleformatswhereappropriate.
• dCSfwillfurtherdisseminatethejointGood practice guidance on supporting parents with a learning disability.
• thenationaldirectorsanddCSfwilldisseminatetheSCieresource guide.
• theworkingtogetherwithparentsnetworkwilldevelopnew goodpracticeguidanceforcommissionersofadultservicesinearly 2009,followedbyguidanceforchildren’sservices;dh(officeofthe nationaldirector)anddCSfwilldisseminatethese.
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95
Chapter 4: People as citizens�
96 Chapter4:peopleasCitizens
Overall policy objective:peoplewithlearningdisabilitieswillbe treatedasequalcitizensinsocietyandsupportedtoenacttheirrights andfulfiltheirresponsibilities
I.� Advocacy
Overall policy objective: allpeoplewithlearningdisabilities can speakupandbeheardaboutwhattheywantfromtheirlives–thebig decisionsandtheeverydaychoices.iftheyneedsupporttodothis,they shouldbeabletogetit.
4.1� peoplewithlearningdisabilitiessaythatbeingpartofaself-advocacy grouporgettingsupportfromanadvocateisareallyimportantpart ofbeingabletotakecontroloftheirlives.therearedifferenttypesof advocacy,including:
• self-advocacy–peoplecomingtogethertospeakupforthemselves;
• citizenadvocacy–volunteersdevelopinglong-termrelationshipswith peopleandspeakingupforthem;
• professionalorrepresentationaladvocacy–peoplebeingpaidto advocatewith,andfor,individualsonashort-orlong-termbasis; and
• peeradvocacy–peoplewhohavethesameorsimilarexperienceof discriminationasthepersontheyareactingasanadvocatefor.
Valuingpeoplenow:anewthree-YearstrategYforpeoplewithlearningdisabilities 97
terry’sstory
terryis19yearsoldandliveswithhismother.hehasbeengoingtoa self-advocacygroupandrecentlytheytalkedaboutValuing People Now: Better housing to live in.terryhasbeenthinkingaboutmovingoutof hishouseforsometime.terry’smotherlouisehaslotsofworriesand concernsaboutwherehewilllive;whetherhewillliveonhisownor whohemaysharewith;howterrywillstaysafe.terrysometimeshas epilepticfitsbutreallywantstobeindependent.likemost19-year-old youngmen,terryjustwantsthechancetoliveafullandactivelife.
theadvocatemeetswithterrytotalktohimandhelphimplanforthe futureandthefirststepistalkingabouthisworries.terryisworriedthathe willnotgettherightamountofsupport;hedoesnotwanttohavesomeone withhimallthetimebuthismotherlouisethinksthatheshould.bothterry andlouisewanttoknowwhatwillhappentoterryifhehasafit.
theadvocatetalkstoterryaboutthesupportthathefeelshewould need,andwhatwouldhelphimfeelsafe.theadvocatealsotalksto terryaboutwhatheenjoysdoinginhislifeandabouthisdreamsfor thefuture.theytalkaboutdifferentkindsofhouseandplacesthat hecouldliveinbygettingpicturesofdifferentkindsofhousesand areasaroundthecity.theadvocatealsotalksaboutrentingandshared ownership.terryisreallyinterestedinowninghisownhomeandasks theadvocatetohelphimtalktohismumandexplainthingstoher. louiseisexcitedabouttheideaofterryowninghisownhomeasthis wasnotsomethingshethoughtwouldbepossible.talkingwithterry andtheadvocatehelpslouisethinkaboutherworriesandconcerns.
theadvocatediscussesthepossibilityofterrygettinganindividual budgetwithhissocialworkerandorganisesameetingwithasupport plannertohelpfacilitateamoredetailedindividualsupportplanwith terry.theadvocatealsoorganisesameetingwithsupportingpeopleto discusshowtheycanhelpterrystaysafebutindependentinhisown homeusingtelecare,telehealthandCommunityalarmsystem.
sixmonthslater,terryandhismumarelookingathousesforterrynear hismum,andareworkingwiththeadvocateandtheirlocalCentre forindependentlivingtothinkabouthowbesttoorganiseterry’s individualbudgettomakesurehecangetthesupportheneeds.terry hasaskedafriendfromcollegetosharewithhimandtheyhopetobe movedinverysoon.
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4.2� governmentpolicyisclearthatpeopleshouldbeabletobeactive citizensandhaveasayabouthowthingsworkwheretheylive (Communities in control: Real people, real power–whitepaper,July 2008).italsorecognisesthatsomepeopleneedsupporttomake thishappen.therearespecificrightsinlawforadvocacyinsome circumstances:
• theMentalCapacityact2005:thisprovidesastatutoryframework foractingandmakingdecisionsonbehalfofindividualswholackthe mentalcapacitytodosoforthemselves.theindependentMental Capacityadvocate(iMCa)servicesupportspeoplewholackcapacity andwhohavenofamilyorfriendstosupportthemwhenserious decisionsaretakenintheirlives;and
• theMentalhealthact2007:arrangementswillbemadetoprovide independentMentalhealthadvocates(iMha)for‘qualifying’patients inenglandfromapril2009.
4.3� inaddition,thejoint(dfesanddh,2007)guidanceonsupporting parentswithalearningdisabilitystatesthatindependentadvocacy shouldalwaysbeprovidedwherechildrenarethesubjectofachild protectionplanand/orcareproceeding.italsosaysthatadvocacyand self-advocacyshouldbemadeavailabletohelpparentsengagewith, andaccess,services.
4.4� thenumberandrangeofadvocacyorganisationshavegrownsince 2001.localauthoritiesnowspendonaverage£106,000onadvocacy forpeoplewithlearningdisabilitiescomparedto£74,000in2004.but peoplewhofundadvocacydon’talwaysknowwhetherthemoneythey spendisreallyhelpingpeoplewithlearningdisabilitiestostayincontrol oftheirlives.advocacyorganisationsneedtobeabletoshowthatthe moneytheyreceivehasmadeapositivedifferenceandthatpeopleare gettingbetterservicesandsupport.
4.5� beingabletospeakupaboutdecisionswhichaffectyourliferelieson beinggiventherightinformationtomakethosechoices.forthisreason Putting People Firstsaysthatpeoplewhoneedsupportintheirlives shouldhaveaccesstobettersupport,informationandadvocacysothat theyareabletonavigatethehealthandsocialcaresystems.accessible informationforpeoplewithlearningdisabilitiesisacrucialpartof thisandasetofstandardsforproducingandcommissioningeasierto understandinformationwillbepublishedinearly2009.
99 Valuingpeoplenow:anewthree-YearstrategYforpeoplewithlearningdisabilities
Making it happen locally and regionally – key recommended actions
• regionalValuingpeopleleadswilldriveaprogrammeofleadership supportinvolvingthenationalandregionalforumstobuildand strengthenself-advocateleaders.
• partnershipboardstodevelopaninformationstrategytopublicisethe availabilityofadvocacyregionallyandlocallyandsharebestpractice.
• localinvolvementnetworks(links)willencourageengagement ofpartnershipboardsandpeoplewithlearningdisabilitiesintheir activities.
• regionalValuingpeopleleadswillsupportservicecommissioners tohelpthemcommissionabroadrangeofhigh-qualityadvocacy servicesandsupport.
National level actions for government departments
• thenationaldirectorswillappointaprogrammeleadforadvocacyto ensurethatthenationaladvocacyprogrammeandfundingfocuses onsupportingadvocacytoachieveagreaterimpact,including:
– atoolforself-advocacygroups;
– worktosupportadvocacyforpeoplefromblackandminority ethniccommunitiesandpeoplewithcomplexneeds;and
– strengtheningleadershipsupportforpeoplewithlearning disabilitiesineveryregiontobuildandstrengthenself-advocate leadersandsupportthedevelopmentofstrongadvocacysupport.
• thenationaldirectorswillleadonworktoensurethatgovernment informationforpeoplewithlearningdisabilitiesismadeavailablein accessibleformats.
II.� Transport
Overall policy objective: by2011, peoplewithlearningdisabilitieswill beabletousepublictransportsafelyandeasilyandwillfeelconfident aboutdoingso
4.6� beingabletousepublictransportisvitalinconnectingpeopleto jobs,servicesandsocialnetworks.lackofaccesstogood,regularand accessibletransportseriouslyimpactsonpeople’sabilitytogetandkeep jobsandfriendsorgetaneducation.
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4.7� thedisabilitydiscriminationact2005requiresallnewtrains,buses andcoachestobeaccessibletodisabledpeopleandtherehasbeen somegoodprogresstowardsanaccessiblepublictransportsystem. sincedecember2006,ithasbeenillegalfortransportoperatorsto discriminateagainstdisabledpeopleorfailtomakeareasonable adjustment.butactionhaslargelyfocusedonphysicalaccess.people withlearningdisabilitiesfaceadditionalbarriers,inparticularthelack ofaccessibleinformation,staffattitudesandharassment(orthefear ofharassment).dfthasproducedbestpracticeguidancefortransport providersontheprovisionofinformationfordisabledpeople,Inclusive Mobility.77
Colinusedtaxistogethimtohisschoolsandcollege.onceColin finishededucation,hebecamesociallyisolatedinhisvillageasno fundingwasavailabletoallowhimtoaccessthingshewishedtodo. hewaseffectivelystuckinthevillage,theonlytimehewentoutbeing whenhewentwithhiscarers.twoyearsago(whenColinwas27)he wasreferredfortraveltrainingashehadbeenofferedaplaceatCase trainingservice.
Caseisanaccreditedtrainingorganisationprovidingmeaningful, effectivetrainingandworkexperienceopportunities.traineesdevelop vocationalandotherskillsattheirownpacewiththeaimofimproving qualityoflifeandenhancingfutureprospects.everyonewhoattends Caseneedstotransportthemselvestoandfromthecentre.
Colinadds:
‘After having my travel training, I felt a lot more confident and began to catch the bus into Beverley. After my training I began to catch the bus into Hull too. I now come through to Hull every Saturday to meet up with my friends from CASE. We go to the café and look around the shops. It makes me feel proud of what I can do. I think it’s a good idea for others to try to learn how to travel independently.’
4.8� dfthasissuedguidanceonhowlocalauthoritiesshouldpublish theirlocaltransportplansandannualreportsinordertomakethem accessibletodisabledpeople.
77 Inclusive Mobility – A guide to best practice on access to pedestrian and transport infrastructure www.dft.gov.uk/transportforyou/access/peti/inclusivemobility
101 Valuingpeoplenow:anewthree-YearstrategYforpeoplewithlearningdisabilities
Making it happen locally and regionally – key recommended actions
• learningdisabilitypartnershipboardstoengagewithlocaltransport planstoensuretheeffectiveinclusionofpeoplewithlearning disabilities.
• Valuingpeopleregionalleadswillsupportlocalsystemstoaddress therangeofsupportpeopleneedtotravel,investmentandissues aroundsafety.
National level actions for government departments
• dftanddhtoensurenationalprogrammesoninclusivetransport includepeoplewithlearningdisabilities.
• dftisleadingastrandofworkaroundinformationandconfidence trainingfordisabledpeopleasaresponsetotheindependentliving strategy.
• dftisworkingwithtransportoperatorstosupporttheminoffering andimprovingdisabilityawarenesstraining.
• dft’sdisabledpersonstransportadvisoryCommittee(dptaC)has producedguidancematerialtothetransportindustrywhichwewill bepromoting.
III� Access to leisure services and recreational activities
4.9� Manypeoplewithlearningdisabilitiesfinditdifficulttouselocal mainstreamservicessuchasleisurecentres,sportsfacilities,libraries, cinemas,restaurantsandshoppingcentres.thismaybeabout inaccessiblefacilities,butitisalsoaboutlackofaccessibleinformation orsignposting,unwelcomingattitudesor,insomecases,lackof appropriatesupportforthosewhocannottravelorparticipatewithout it.publicservicesneedtobemindfuloftheirdisabilityequalitydutyand proactiveinprovidinginformationabouttheirfacilitiesorprogrammes thatiseasytounderstand.
4.10 peoplewithmorecomplexneedsareoftennotconnectedtotheir communities,orgivenanymeaningfulprogrammeofvocational,social, leisureorlearningactivities.newinitiativessuchasthelifeinthe
102 Chapter4:peopleasCitizens
Community78 projectandChangingplaces(seetextboxonpage107) demonstratethatthisdoesnotneedtobethecase.
4.11 anotherchallengeishowtoprovidemeaningfullearningopportunities forpeoplewithlearningdisabilitieswhowanttore-enteradult educationinlaterlifeortakeuplearningprogrammesforrecreation only.
Making it happen locally and regionally – recommended key actions
• localauthoritiesandtheirpartnerswillincludeleisureandsocial activitiesindevelopingpersoncentredapproachesandplanningfor peoplewithlearningdisabilitiesandtheirfamilies.
National level actions for government departments
• dhwillworkwiththedepartmentforCulture,Mediaandsportto explorehowlocalleisureservicescanbemademoreaccessiblefor peoplewithlearningdisabilities.
78 foundationforpeoplewithlearningdisabilities,lifeintheCommunity.see:www.learningdisabilities.org.uk/ our-work/community-and-inclusion/life-in-the-community/
Valuingpeoplenow:anewthree-YearstrategYforpeoplewithlearningdisabilities 103
Changingplaces
theChangingplacescampaigniscallingforfullyaccessibletoilets–with achangingbench,hoistandplentyofspace–tobeinstalledinallbig publicplacesintheuK.
asbethan,mumtolowriwhohasprofoundandmultiplelearning disabilities,explains:
‘Without Changing Places toilets it is a nightmare. We try to plan our days around being home for meal times because Lowri needs to go to the toilet, meaning we can only spend a few hours away from home. We have a large mat which we carry around in case we have to change her when we are out. We put this down on the floor of ‘disabled’ loos and just muddle through – we have countless experiences at eye level of disgusting toilet floors.’
lowriisawheelchairuserwithnoindependentmobilityandneeds complete24-hoursupportwithallaspectsofhercare.shewears continencepadswhichneedtobechangedinaChangingplacestoilet. bethanandlowri’sliveshavebeenchangedthankstoaChanging placestoiletbeingopenedinnottingham.
thankstotheChangingplaces campaignthenumberofChanging placestoiletsintheuKhas increasedfromeightto58inthe lasttwoyears.butforthemany thousandsoffamilieslikebethan’s, thisisnotnearlyenough.
formoreinformationvisit www.changing-places.org
104 Chapter4:peopleasCitizens
IV. Being safe in the community and at home
Overall policy objective: peoplewithlearningdisabilitieswillbeable toleadtheirlivesinsafeenvironmentsandwillfeelconfidentthattheir righttoliveinsafetyisupheldbythecriminaljusticesystem.
Hate crime
4.12 peoplewithlearningdisabilitiestellustheyhavearighttoliveinsafety andtobetakenseriouslywhentheycomplainaboutabuseorreporta crimeagainstthem.thelivesoftoomanypeoplewithlearningdisabilities areconstrainedbyexperienceofabuseandneglectandmanypeople havebeenvictimsofhatecrime.peoplefromblackandminorityethnic groupsandnewlyarrivedcommunitiesareparticularlyatriskofhate crime.butevidenceshowsthatwhenpeopledoexperiencecrimeor abusetheyoftenfinditdifficulttoreportitbecausepoliceprocessescan beinaccessibleandunwelcomingandtheyfeeltheymayreceiveapoor responsefromthecriminaljusticesystem,whodonotalwaysunderstand howtoworkwithorsupportpeoplewithlearningdisabilities.
4.13 thedisabilitydiscriminationact2005andthehumanrightsact1998 provideaframeworkforensuringthatpeoplewithlearningdisabilities arenotsubjectedtoharassment,orworse,andhaveequalaccessto thecriminaljusticesystem.theracerelations(amendment)act2000 protectsthosefromblackandminorityethniccommunities,andracially aggravatedcrimesaregivenenhancedsentencesundertheCrimeand disorderact1998.however,evidenceshowsthatthereismoretobe donetoprotectpeoplefromhatecrime.
4.14 thegovernmenthasbecomemoreinformedabouttheproblemof disabilityhatecrimethankstothenationalforumforpeoplewith learningdifficulties,whichhasbeenleadingacampaignforaction ondisabilityhatecrime.thehomeoffice,togetherwiththeMinistry ofJusticeandtheassociationofChiefpoliceofficers(aCpo),is leadingonanumberofrelatedworkstrandsaspartoftheirtackling Violenceactionplan(publishedinfebruary2008).79theplanwillfocus ontacklingthoseoffencescausingthemostharmandthisincludes disabilityhatecrime.akeycomponentofthisplanisthedevelopment ofacomprehensive,cross-cuttinggovernmenthateCrimestrategy, includingdisabilityhatecrime.
79 www.homeoffice.gov.uk/about-us/news/violent-crime-action-plan
Valuingpeoplenow:anewthree-YearstrategYforpeoplewithlearningdisabilities 105
4.15 thehomeofficehasalsofundedtwovoluntarysectorprojectstoraise awarenessofhatecrimeandimproveunderstandingandreportingof hatecrimeagainstpeoplewithlearningdisabilities:
• ‘learningtogether’,aprojectrunbyinclusionnorthandCoast2Coast toassistlocallearningdisabilitypartnerships,advocacygroups andcommunitysafetypartnershipstoimproveunderstandingand reportingofhatecrimesagainstpeoplewithlearningdisabilities;and
• distributionofthepeopleinpartnership‘pip’pack,designedby self-advocatestoraiseawarenessofhatecrimeandpersonalsafety (seebelow).
thepeopleinpartnership‘pip’pack,designedwithpeoplewith learningdisabilities,criminaljusticeandsupportagencies,contains informationandtoolsforpeopletoknowabouttheirrights,the law,howtokeepsafe,howtoaccessthepoliceandsupport services,andhowtoreportcrime.
thepackincludesareportingbookwithinformationaboutcrime, hatecrimeandhowtoreportitandaneasy-to-usereporting form.thiswillbeavailableforpeoplewithlearningdisabilities acrossthecountrytoreportcrimeandhatecrimethroughpolice forcesandtrueVision.
4.16 otherkeyworkstrandswithinthecriminaljusticesystemaspartofthe workledbyraceforJustice80include:
• improveddatacollectionandmonitoringofdisabilityhatecrime;
• thedevelopmentofnewminimumstandardsofinvestigationinto disabilityhatecrimeforpolice;
• thedevelopmentofnewstandardsforcriminaljusticesystem professionalsworkingondisabilityhatecrimeandatrainingneeds analysisforpolice.
4.17 workledbythecriminaljusticedepartments(homeoffice,Cps,MoJ andtheattorneygeneral’soffice)includestheintroductionofspecial measuresfordisabledwitnesses,including:
80 seeglossary
106 Chapter4:peopleasCitizens
• aidstocommunication–thiswillbepermittedtoenablewitnesses togivetheirbestevidencewhetherthroughacommunicatoror interpreter,orthroughacommunicationaidortechnique,provided thatthiscanbeindependentlyverifiedandunderstoodbythecourt;
• theuseofanintermediary–someonewhocanhelpavulnerable witnessunderstandquestionstheyareaskedandwhocanthen communicatethewitness’sresponsetothecourt;and
• assessingthetypesofsupportavailabletovictimswithlearning disabilitiesandwhichorganisationsmightprovidethissupport.
Safeguarding
4.18 dhhaspublishedaconsultationonthereviewoftheNo Secrets guidanceonsafeguardingvulnerableadults.81aspartofthis consultationthedepartmentwillspecificallytalktoadultswith learningdisabilities.
Making it happen locally and regionally – recommended key actions
• Valuingpeopleregionalleadswillworktosupportlocalauthorities inrespondingtotheconsultationdocumentSafeguarding Adults: A Consultation on the Review of the ‘No Secrets’ Guidanceandthen withtheoutcomesoftheconsultation.
• governmentoffices(holead)willsupportpartnershipboardsto engagewithlocalcrimeanddisorderpartnershipsandtoidentifya hatecrimeleadandalinkpersonresponsibleforworkingwiththe safeguardingboards.
• Crimeanddisorderreductionpartnershipstoensuretheir responsetohatecrimeagainstpeoplewithlearningdisabilities ismainstreamedwithintheirresponsetohatecrimeoverall.
National level actions for government departments
• thehomeofficeanddhwillworktogethertomakesurethatthe hateCrimestrategy,whichincludesdisabilityhatecrime,addresses thespecificissuesforpeoplewithlearningdisabilities.
• thehomeofficewillalsoworkwithdhondevelopingspecific learningdisabilityguidanceforCrimeanddisorderreduction partnerships,whichincludelocalauthoritiesandthepolice.
81 Safeguarding Adults: A Consultation on the Review of the ‘No Secrets’ Guidance,dh,2008
107 Valuingpeoplenow:anewthree-YearstrategYforpeoplewithlearningdisabilities
• dhwillpublishrevisedNo Secretsguidancefollowingconsultation.
• theCrownprosecutionservice(Cps)haspublisheditsdisabilityhate crimepolicy.itpublishedthereportonitsfirstyear’sperformancein itsannualhatecrimereportindecember2008.82
• theofficeforCriminalJusticereformwillworkwithaCpoandlocal CriminalJusticeboardstoupdatenationalguidanceandimprove nationalstandardsandtrainingtoensurevulnerablevictimsand witnessesareidentifiedattheearliestpossiblestageandproperly supportedthroughoutthecriminaljusticeprocess.
IV. Access to justice and redress
4.19 peoplewithlearningdisabilitiesarelesslikelytomakeacomplaintorseek legalredressifunfairlytreatedoriftheyexperiencepoorpracticebecause:
• systemsandprocessesareoftencomplicated,inaccessibleand‘hidden’;
• peoplewithlearningdisabilitiesmaylackconfidencetospeakout;
• peoplewithlearningdisabilitiesmaybemoreacceptingofpoor practicebecauseexperienceofreceivingpoorqualityserviceshas giventhemlowexpectations;or
• peoplewithlearningdisabilitiesmaynotbeinapositiontoaccess thesupporttheyneedandsostrategiesforextraaccesstosupport needtobedevised.
82 Hate Crime Report 2007–2008, Crownprosecutionservice,2008
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4.20 theCarestandardsact2000requiresallregisteredcarehomesand domiciliarycareservicestohaveacomplaintsprocedurethatisaccessible andwelcoming,andtomakesurethatpeoplewhouseservicesand theirfamiliesarefullyawareofhowtomakeacomplaint.otherpublic servicesshouldalsohaveanopencomplaintsprocedure.theseshould tellpeoplewhattodoifacomplaintisnotresolvedsatisfactorilyat alocallevel,andoftenthereisanationalbody(e.g.theCareQuality Commission)thatwillreceivecomplaintsatahigherlevelandrespond wherenecessary.
4.21 peoplecantakelegalactionwhentheyfeelthattheirrightshavebeen breachedunderthefollowingacts(andothers)whichplaceadutyon publicservices:
• humanrightsact1998
• disabilitydiscriminationact2005
• racerelations(amendment)act2000
• MentalCapacityact2005–deprivationoflibertysafeguards
• Mentalhealthact2007.
insomecasespeoplecangotoatribunaltoseekjustice.
Making it happen locally and regionally – key recommended actions
• localservicestodevelopaccessiblematerialstohelppeoplewith learningdisabilitiesandtheirfamiliesunderstandtheirrightsandhow tocomplain.
National level actions for government departments
• dhwilldevelopmaterialstohelppeoplewithlearningdisabilitiesand theirfamiliesunderstandtheirrightsofredressandhowtocomplain, andpublishthemontherevisedValuing People Now website.
• theCpswillrespondtotheconsultationonanewpolicyon prosecutingcrimeswherepeoplewithlearningdisabilitiesarevictims orwitnessespublishedindecember2008.83
83 A consultation on the CPS Policy on prosecuting criminal cases involving people with mental health problems and/or learning disabilities as victims and witnesses,Crownprosecutionservice,2008(www.cps.gov.uk/ consultations/mhld_index.html)
109
Chapter 5: Making it happen
110 Chapter5:Makingithappen
I.� Leadership and delivery structures
Overall policy objective: toputleadership,deliveryandpartnership structuresinplacethatwillmakesurethattheoutcomessetoutinthis strategyaredelivered.
5.1� Valuing Peopleestablishedanumberofbodiesandmechanismstohelp implementitsproposalsbutthebiggestcriticismofValuing Peoplehas beenthefailuretodeliveritinmanyareas.thetoppriorityistodeliver theobjectivesinthisstrategysothattheValuing People visionbecomes areality.
5.2� keytodeliveringthevisionforpeoplewithlearningdisabilitiesandtheir familieswillbethedevelopmentofcapacityandcapabilityatlocallevels todesignandcommissionthesupportservicesthatpeopleneedto enablethemtoliveindependentlyandclosetotheirfamiliesandfriends. partnershipwithpeoplewithlearningdisabilitiesandtheirfamiliesat locallevelwillbecrucialtothis,andLearningDisabilitypartnership Boardshaveavitalroletoplay.
5.3� Dhwilldeveloptoolsandtoolkitsatanational,regionalandlocal leveltobuildcapacityandcapabilitylocallytoenablelocalsystemsand practicestodeveloptodeliverkeyobjectivesforpeoplewithlearning disabilities.
5.4� DhhasappointedDeputyregionalDirectorsforSocialCareand partnershipsinthegovernmentOfficesfortheregionstoprovide leadershipandcommissionsupporttodeveloplocalcapacityand capability.theseDeputyregionalDirectorswillworkwithstrategichealth authoritiesandwithinthegovernmentOfficeincludingwithregional Directorsofpublichealth,andValuingpeopleandpersonalisationregional leadstobuildcapacityandcapabilitylocallytoenablelocalsystemsand practicestodeveloptodeliverkeyobjectives.
5.5� nationallyandregionally,structureshavebeenputinplacetoenable localservicestochangepracticeandimprovesupportforpeoplewith learningdisabilitiesthroughJointStrategicneedsassessments,Local Strategicpartnerships,Localareaagreements,Jointimprovement partnershipsandComprehensiveareaassessments.Wewillexplorewith theCareQualityCommissionhow,incarryingoutitsstatutoryfunctions, itcanbestsupportimplementation.
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5.6 Leadershipfordeliveryatalllevelswillcomefrom:
At a National level:
• thenationalDirectors–willleaddeliveryincludingcross-government work,supportedbyasmallteamofnationalprogrammeleads;
• theLearningDisabilityprogrammeBoard,whichisco-chairedby theSocialCareMinisterandtheDhDirectorgeneralforSocial Care,LocalgovernmentandCarepartnerships,andwilloversee thedeliveryofValuing People Now.theboardbringstogetherkey governmentdepartmentsandpartnersandwillensurethecontinued cross-governmentimplementationofthestrategy;
• thenationalforum,which(viaitsnineregionalforums)willcontinue torepresentthevoiceofpeoplewithlearningdisabilitiesatnational level,strengtheningitscontributiontopolicymaking;andidentifying howitwillsecureitsfuture,andfunding;
• thenationalValuingfamiliesforumwillbringthevoicesoffamily carersofpeoplewithlearningdisabilitiestothenationallevel throughrepresentation.
At a regional level:
• strategichealthauthorities,whichwillsetthestrategicdirectionand performancemanageprimarycaretrusts;
• ValuingpeopleregionalleadswillreportdirectlytothenewDeputy regionalDirectorsforSocialCareandpartnerships,makingfor strengthenedpolicyanddeliveryleadershipatregionallevel.these regionalleadswillsupportworktodevelopcapacityandcapability atlocalandregionallevel,particularlyinrelationtolocalLearning DisabilitypartnershipBoards.WiththeDeputyregionalDirectors, theywillestablishregionalprogrammeboardswhichwillreporton progresstothenationalprogrammeBoard,setregionalpriorities, andagreeregionalsupportprogrammesincludingdevelopmentbids forregionalimprovementandefficiencyprogrammefunding;
• theLearningDisabilityDevelopmentfund(LDDf)isnowpaiddirectly tolocalauthoritiesaspartofthearea-basedgranttosupportthem indeliveringthekeyoutcomesforpeoplewithlearningdisabilities withinthenationalindicatorSet.
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At a local level:
• theValuingpeopleteamwilldeveloptoolstosupportlocalactionto delivertransformationandsupportprovisionofrobustdatatoinform localaction,andenablepartnershipboardstobenchmarkprogress;
• thenationalDirectorsandValuingpeopleteamwilltargetsupporton thoseareasthatareunderperformingandencouragegoodpartnership boardstomentorpoorperformers.Directorsofchildrenandadult socialservices,pCtchiefexecutivesandlocalauthorityelected membershaveanimportantroletoplay.thirdsectorandindependent sectorproviderswillalsobevitalindeliveringthisstrategy.
II.� Partnership boards
‘It is time for boards to make a noise and make sure that improving lives for people with learning difficulties is seen as a priority in the wider community.’
Speakingup,Cambridge
5.7� Valuing PeopleestablishedlocalLearningDisabilitypartnershipBoards todeliveratlocallevel.theirimpacthasbeenvariable.tworecent researchreports84foundthattheeffectivenessofboardswasreliant onthecommitmentoftheirmembers,especiallyatseniorofficerlevel.
84 The Role and Effectiveness of Learning Disability Partnership Boards,rachelfysonandLizfox,universityof nottingham,2008(www.mencap.org.uk)andHow well are Partnership Boards hearing the voices of People with Learning Difficulties and Family Carers?,Speakingup,2007
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Whileboardshaveimprovedthewayinwhichtheyhaveinvolvedpeople andtheirfamiliesoverall,oftentheyfeltmarginalised.insomeplaces representationfromotherkeyagencieswaspoor,andonly1in3boards setannualtargetsagainstwhichsuccesscouldbemeasured.
5.8� Oneproblemisthatsomepartnershipboardshardlyexistoutsidethe formalmeeting.itwouldbemorehelpfulforpeopletothinkofarange oflocalLearningDisabilitypartnerships,whichexistallyeararound, withaLearningDisabilitypartnershipBoardmeetingeveryfewweeksto discussandreviewthesepartnerships.Stronglocalpartnershipsdepend onleadershipfromservices,fromself-advocatesandfromfamilycarers. Boards seen to be more effective and strong are usually led by the Director of Adult Social Care, with the authentic involvement of local self-advocacy and carer leaders.
5.9� Localpartnershipboardswillbeexpectedtoreportregularlytothe newlyestablishedregionalprogrammeboards;theseregularreports mustbeagreedbytheself-advocacyandfamilycarerrepresentatives ontheboard.
Making it happen locally and regionally – key recommended actions
• LearningDisabilitypartnershipBoardswillbesupportedbyValuing peopleregionalleadstotaketheirplaceatthecentreoflocaldelivery ofthekeyobjectives.thiswillmeanbuildingcloselinksbetween partnershipboardsandtheJointStrategicneedsassessmentprocess, LocalStrategicpartnershipsandtheLocalareaagreement,aswell aslocalOverviewandScrutinyCommittees.
• WithsupportfromtheValuingpeopleregionalleads,localLearning Disabilitypartnershipswillreviewtheirboardmembership,processes ofengagementandworkingpracticeswithaviewtoensuringthat theboardisproperlyconstitutedandled;consultedbystatutory agencies;operatinginlinewithgoodpracticeadvice;andensuring sufficientresourcesfortheoperationoftheboard.Directorsofadult SocialServicesandpCtChiefexecutiveshaveimportantleadership rolesatlocallevel.
114 Chapter5:Makingithappen
• DeputyregionalDirectorsforSocialCareandpartnershipsandValuing peopleregionalleadswilldriveforwardaprogrammeofworkto developcapacityandcapabilityinlocalitiestostrengthenregional partnerships,andinparticularwillsupporttheregionalprogramme boardtowhichtheywillprovideanannualself-assessmentofprogress. StrategichealthauthoritiesandthegovernmentOfficesforthe regionshavekeyrolestoplaywithinregionalprogrammeboards.
National level actions for government departments
• thenationalDirectorsandValuingpeopleteamwillinvestinfurther strengtheningofnationalstructuresthatenabledeliveryofchange.
III. Better commissioning
Overall policy objective: toensureeffectivecommissioningina waythatbestsupportstherightoutcomesforpeoplewithalearning disabilityandtheirfamilies.
5.10 effectivepartnershipactionwillbeessentialfordeliveringtheright outcomesforpeoplewithlearningdisabilities.partnershipboardswillbe integraltodeliveringsuccessincommissioningacrossthefullrangeof servicesneededbypeoplewithlearningdisabilitiesandtheirfamilies.
5.11 acommissioningconcordatiscurrentlybeingdevelopedacrossDh, CLgandDCSfwhichcommitsthethreedepartmentstoimprovingand sharingtheirunderstandingofcommissioningandtheskills,knowledge andbehavioursthateffectivecommissionersneedinordertodesign servicesandshapeandsecurebetteroutcomesforindividualsand communities.
5.12 theWorldClassCommissioningprogrammeisDh’sapproachtoimproved commissioning.theprogrammeaimstobuildthecapabilityoflocalhealth commissionerstodeliverbetterhealthandwell-beingforthepopulation, improvehealthoutcomesandreducehealthinequalities.85akeyaspectof thisprogrammeisforprimarycaretrusts(pCts)toleadthedevelopment ofhealthandwell-beinginpartnershipwithotherlocalstakeholders.
5.13 LocalauthoritieshaveadutytoprepareaSustainableCommunityStrategy whichsetsoutthestrategicvisionforanareatogetherwithadelivery plan,theLocalareaagreement.LocalauthoritiesandpCtsarerequired
85 www.dh.gov.uk/en/managingyourorganisation/commissioning/worldclasscommissioning/index.htm
115 VaLuingpeOpLenOW:aneWthree-YearStrategYfOrpeOpLeWithLearningDiSaBiLitieS
todevelopaJointStrategicneedsassessment(JSna)whichwillinform thepCt’sstrategicplanandarangeofotherlocalcommissioningplans overseenbytheLearningDisabilitypartnershipBoard.
5.14 Localauthoritieshavealeadresponsibility:
• incommissioningservicesforpeoplewhohavenottakendirectcontrol oftheirfundingthroughDirectpaymentsandpersonalbudgets;and
• forthosewhohaveDirectpaymentsorpersonalbudgets,inhelping toensuretheavailabilityofappropriatesupportandarangeof opportunitiesfromwhichtheycancommissiontheirownsupport inordertoenablethemtoachievetheirambitionsandaspirations.
5.15 nhSlearningdisabilitiesbudgetsandassociatedcommissioning responsibilityforallsocialcareforadultswithlearningdisabilitieswill transfertolocalauthoritiesbyMarch2010.thisdoesnotinclude resourcesforhealthcare(whethergeneralorspecialist)orforensic/ offenderservices,whichwillremainwithpCts.guidanceonthiswas issuedtopCtsandlocalauthoritiesinaugust2008.86thischangewill allowthenhStofocusfullyonitsprimarylearningdisabilityresponsibility toensurethedeliveryofequalaccesstogoodqualityhealthcareand well-being.ButpCtsandlocalauthoritieswillneedtocontinuetowork togethertocommissionservicestoensuregoodoutcomesoverallfor peoplewithlearningdisabilitieswhoneedsupport.
5.16 Spendingonsocialcareforadultswithlearningdisabilitiesincreased fromapproximately£1.5billionin1995/96toapproximately£3billion in2005/06asaresultofdemographicchanges,risingcostsand improvementsinservices.theComprehensiveSpendingreview settlementforlocalgovernmentrecognisesthedemographicand otherpressuresfacingthesector.
5.17 Dhwillexplorehowtoimproveinformationabouttheincreasing demandsonlearningdisabilityservicesinordertoinformfuture spendingdecisions,takingaccountof:
• theroleofstrongregionalandlocalpartnershipstodevelop collaborativecommissioning;
• theneedforaccuratedataabouttheneedsofpeoplewithlearning disabilities;
86 www.dh.gov.uk/en/publicationsandstatistics/Lettersandcirculars/Dearcolleagueletters/Dh_087148
116 Chapter5:Makingithappen
• evidencefromtheinControlpilotswhichshowsthatindividualised services,basedonwhatpeoplewant,costthesame–ifnotless– thantraditionalservicesandthatindividualisedservicesachievebetter outcomesforpeople;and
• meanstoincreaseefficiencythroughsystematicapproachestoquality andcostingservices.anationaltooltosupportthisisbeingpiloted.
5.18 Livinglocally,inyourowncommunity,isanimportantpartofbeing acitizen.however,manypeoplewithlearningdisabilitieshavebeen senttolivefarawayfromtheirhomeinresidentialhomesorprivate hospitals.Bestpracticeisthatpeopleshouldreceiveserviceslocallyand commissionersshoulddevelopsystemstoenablethis,workingclosely withpeoplewithlearningdisabilities,familycarersandserviceproviders.
5.19 Wherepeoplearesentawayfromhome,thismakesitdifficultto maintainsocialnetworksandfriendships.inaddition,thisisoverall anexpensivewayofgivingpeoplethesupporttheyneed.Bringing peoplebacktotheirhomeareasfromsuchplacementsanddeveloping localservicestosupportpeoplewithlearningdisabilitiestolive independentlyis,therefore,akeygoal.Putting People First emphasises thatcommissioningstrategiesshouldreflectthemovetopersonalised services.thelocalauthoritytransformationgrantwillenablelocal servicestoaddressthis.
5.20 evidenceshowsthatcommissioningappropriatelocalservicescanboth delivermeasurableimprovementsinqualityoflifeandindependence forpeoplewithlearningdisabilities,includingthosewithcomplexneeds orwhomaybedescribedaschallenging,anddeliversavingsinfunding. therearegoodexamplesofactionalreadywellinhandtodeliver thisobjective:
• inhertfordshirethelocalauthorityandhertfordshirepartnership nhSfoundationtrustsponsoredthedevelopmentofanewnot-for-profitorganisationtoworkinthecounty.Withseedfundingfrom aninnovationgrantovertwoyears,partnersinSupportwascreated in2007asaregistereddomiciliarycareserviceprovider.Working specificallywithindividualswhowereseentochallengeservices, partnersinSupporthavebeendevelopingindividualisedsupport solutionsbasedonindividuals’personcentredplans,workingclosely withindividualsandtheirfamilies.asaresult,peoplehavebeen supportedtomoveneartotheirfamiliesintoaccommodationoftheir choosing.eachpersonhastheirownteamemployedtoworkwith
117 VaLuingpeOpLenOW:aneWthree-YearStrategYfOrpeOpLeWithLearningDiSaBiLitieS
them,matchingstaffwithsimilarinterestsandfullyinvolvingthe individualand/ortheirfamilyintherecruitmentprocess.
• inrichmond,Surreyasmaller-scaleprojectworkedtobringthree peoplehomefromlong-establishedout-of-areaplacements.Working closelywiththefamiliesandsupportedbyanindependentconsultant, thelocalauthorityandhealthteamdevelopedindividualcare packages–forinstanceonehashisowntenancy,withsupport,andis seekingwork,anotherhasmovedfromalargeresidentialhomeinto ahouseofherownwithherownsupportteam.Overalltherehave beenconsiderablesavingswhichhavebeenreinvestedinsupport servicesandmeasurablyimprovedqualityoflifefortheindividuals concerned.
Making it happen locally and regionally – key recommended actions
• pCtsandlocalauthoritiesagreelocallyonthenhSresourcestobe transferredtolocalgovernment.
• regionalValuingpeopleleadswillsupportlocalauthoritiesand pCtstodeveloprobustcommissioningprocessesbasedontheJoint Strategicneedsassessment.
National level action by government departments
• Commissioningandfundingforcareserviceswillbemovedfromthe nhStolocalgovernment.
• Dhwillsupportworktofurtherunderstandchangesindemandfor learningdisabilityservices.
• DhthroughtheWorldClassCommissioningprogrammewillprovide furthersupporttolocalcommissionersbypublishingacommissioning guideforthehealthandwell-beingofpeoplewithlearningdisabilities. thisincludesadviceonapproachestothewholecommissioning cycleasitrelatestopeoplewithlearningdisabilitiesandoffers someexamplesofbestpractice.
• anationaltoolkitforfairpricingofserviceswillbelaunchedin2009.
• ValuingpeopleregionalleadswillsupportdeliveryoftheMansell reportandtheLocalServicesforLocalpeopleprogramme.
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IV. Developing the workforce
5.21 Overall policy objective: theworkforcesacrosspublicservicesare giventheappropriatesupportandtrainingtoequipthemwiththe values,skillsandknowledgetodelivertheValuing People Nowpriorities forallpeoplewithlearningdisabilities.
5.22 implementingValuing People Nowhasimplicationsforworkersacross allareasofpublicservicesincludingthoseworkinginhealth,social care,education(includingpost-16education),housing,transport,local government,employmentagencies,Jobcentreplus,thecriminaljustice systemandtheleisureindustry,aswellasincommissionedservices. governmentdepartmentsandtheappropriateworkforceorganisations needtoconsidernewwaysofenablingawiderangeofworkersto developtheknowledge,skillsandvaluestoprovideservicestopeople withlearningdisabilitieswithrespectandasequalcitizens.
5.23 asmorepeoplewithlearningdisabilitieshavedirectpaymentsora personalbudget,theworkforcewillneedtochange.facilitationor brokeragemayhelppeopletomakethebestuseofthemoneyintheir personalbudget.peoplewithlearningdisabilitiesandfamilycarerswho maysupportthem,whodecidetotaketheoptionofemployingtheir ownworkersmayneedtrainingtohelpthemtobeagoodemployer. peoplewhochoosetopurchasetheirsupportfromaprovidermaywant topurchasedifferenttypesofsupportfromwhatiscurrentlyonoffer. thiswillhavesignificantimplicationsacrossarangeofserviceproviders, andparticularlyfortheadultsocialcareworkforce.
5.24 inDecember2008thegovernmentpublishedthe2020 Children and Young People’s Workforce Strategy.87thissetsoutthegovernment’s visionthateveryonewhoworkswithchildrenandyoungpeopleshould be:
• Ambitiousforeverychildandyoungperson;
• Excellentintheirpractice;
• Committedtopartnershipandintegratedworking;
• Respectedandvaluedasprofessionals.
5.25 DhisdevelopinganadultSocialCareWorkforceStrategy(Putting People First – Working to Make it Happen) whichisduetobepublished in2009.aninterimstatement,Putting People First – Working to Make
87 www.everychildmatters.gov.uk/deliveryservices/childrenandyoungpeoplesworkforce
119 VaLuingpeOpLenOW:aneWthree-YearStrategYfOrpeOpLeWithLearningDiSaBiLitieS
it Happen,88waspublishedinJune2008.thissetsoutprogresssofar andthesixstrategicthemesforthedevelopmentofanadultSocial CareWorkforceStrategythatcouldsupportthetransformationof adultsocialcare:
• recruitment,retentionandcareerpathways;
• workforcedevelopment;
• workforceremodelling;
• leadership,managementandcommissioningskills;
• jointandintegratedworking;and
• regulationandqualityimprovement.
5.26 theworkforceproposalsrelatingtosocialcareinValuing People Now willneedtobetakenforwardinthecontextofthiswideradultSocial CareWorkforcestrategy.
5.27 Cross-governmentworkonhealth,education,housing,transport,carers andcriminaljusticehasworkforceimplications.underpinningthesenew policiesisaneedforworkforceplansincludingdevelopingnewtraining andqualificationswhereappropriate.includingpeoplewithlearning disabilitiesandfamilycarersinthisplanningandtrainingisvital.the LearningDisabilityawardsframeworkhasraisedtheprofileandvalue oflearningdisabilityspecifictrainingforarangeofworkers.nationally accreditedqualifications(suchasnVQs)willbeimportantinthefuture inpromotingequalaccesstopublicservicesforpeoplewithlearning disabilities.
5.28 tosupporttheimplementationofValuing People Nowthefollowing prioritiesforworkforceplanninganddevelopmentacrossallsectors andparticularlythesocialcaresectorhavebeenidentified.thenational workforceorganisations,e.g.SkillsforCare,haveakeyroletoplay withinthis:
• preparingtheworkforceforthepersonalisation agenda,including:
– stronglocalandnationalleadershipandmanagementofthe changeprocess;
– alllocalauthoritiesandproviderorganisationstoofferarangeof informationandlearningopportunitiesforstaff;
88 Putting People First – Working to Make it Happen,Departmentofhealth,2008
120 Chapter5:Makingithappen
– opportunitiestolearnfromtheearlyadoptersofself-directed supportabouttheworkforceopportunitiesandchallengesthey haveencounteredtoinformthechangeprocessandfuture provision;
– newlearningdisability-focusedqualificationsandcareerstructures toprovideaframeworkforchangeandtosupportworkersin developingskillstosupportthetransformation.
• greaterinvolvementofpeoplewithlearningdisabilitiesandfamily carersinallaspectsofworkforceplanninganddevelopment.
• promotinghumanrightsandtheValuing People Nowvaluesinall professionalcoursesandwork-basedtraining.
• Workingwithprofessionalbodies,therelevantSectorSkillsCouncils andregulatorstoprovidenewnationalqualificationandcareer structurestogiveallworkerstheknowledgeandskillstodeliver high-qualitysupportandprotectpeoplefromabuse.
• Developingtheworkforcetodeliversupportlocallyforthemost excludedgroupsofpeople(peoplewithcomplexneeds,behaviour whichchallenges,autisticspectrumconditions,mentalhealthneeds, orpeoplefromblackandminorityethniccommunities),inlinewith theMansellreport.
Martin’sStory
Martin, a person with learning disabilities providing training about communication and hearing evidence from other people with a learning disability to JCHR. More details can be found at:
www.bild.org.uk/03consultancy_joint_ committee_human_rights%20.htm
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Making it happen locally and regionally – key recommended actions
• regionalValuingpeopleleadstogetherwiththeirregionalworkforce networkwillsupportpartnershipboardstocontinuetheirworkin developingandimplementingalocalworkforceplan.
• regionalValuingpeopleleadswillworkwithregionalandlocal bodiestoaddressissuesaroundworkforcedevelopmentincluding thebenefitsofinvolvingpeoplewithlearningdisabilitiesandfamily carersinworkforceplanningandtrainingandtheneedtoadopt ahumanrightsapproachinworkforcedevelopmentinlinewith existinglegislation.
• Supportorganisationsandtrainingproviderstocontinueusingthe learningdisabilityqualificationsandnVQsfortheinductionand developmentofworkerssupportingpeoplewithlearningdisabilities.
National level actions for government departments
• thenationalDirectorsandtheValuingpeopleteamwilldrive forwardaprogrammeofworktosettheenvironmentfor improvementincluding:
– workingwithothergovernmentdepartments,publicservices andrelevantworkforceorganisationsandprofessionalbodies toinfluencethewayinwhichtheyapproachtherecruitment, traininganddevelopmentoftheirstaff;
122 Chapter5:Makingithappen
– bringingtogetherallthelearningaboutworkforceissuesrelating tothepersonalisationagendaandsupportingitswidedissemination toinformfutureworkforcechangesnationallyandlocally;
– supportingtheimplementationoftheadultSocialCare WorkforceStrategyinthesector;
– supportingthedevelopmentanddeliveryofnewknowledgesets andlearningdisability-focusedqualificationsandcareerpathways forworkerssupportingpeoplewithlearningdisabilities;
– workingwiththegeneralSocialCareCouncil(gSCC),SocialCare instituteforexcellence(SCie)andSkillsforCare,wewillexplore howthesenationalorganisationscanbestsupporttheworkforce todeliverValuing People Now;
– promotingtheinvolvementofpeoplewithlearningdisabilities andfamilycarersinallaspectsoflocal,regionalandnational workforceplanninganddelivery;
– developingtrainingmaterialswhererequiredforarangeof differentaudiencestopromoteagreaterunderstandingofhuman rightsandahumanrightsapproach.
V. Measuring performance and data collection
Overall policy objective: Learningdisabilitieswillhaveaclearposition inthenewperformanceframeworksforthenhSandlocalauthorities, andtherewillbeacomprehensiverangeofdatasetsandreporting mechanisms.
5.29 Somecurrentinformationandcheckingsystemsprovideimportant informationforthegovernmentaboutlearningdisability.theseinclude CSCi-collecteddataonexpenditureonadvocacyandthenumbersof peopletakingupdirectpayments.throughinspections,regulatorshelp toidentifypoorperformanceandenablecommissionersandproviders toaddressproblemsindeliveringservices.
5.30 Buttherearegapsinthedataset–thenhSdoesnotcollectinformation onthehealthofpeoplewithlearningdisabilities;datacollectedbylocal authoritiesmaynolongerberelevanttomodernlearningdisability services;andmostdatacollectedintheemployment,educationand housingsectorsdoesnotreportspecificallyonlearningdisability. intakingforwardthisstrategy,wewillcontinuetoexplorehowto improveinformationonthenumbersandneedsofpeoplewithlearning
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disabilities,indiscussionwiththeLearningDisabilityCoalitionand councils.thiswillenablebetterunderstandingofcurrentandprojected demandsforthisareaandhelptoinformlocalneedsassessments.
5.31 nationally,thereareframeworkswhichderiveinformationtosupport theValuing People visionincludingpublicServiceagreements (pSas). therearetworelevantindicatorsspecifictolearningdisabilities:
• pSa16(increasetheproportionofsociallyexcludedadultsinsettled accommodationandemployment,educationortraining)89includes twonewnationalindicatorstoprovideinformationonthesocial inclusionofpeoplewithlearningdisabilities:
– theproportionofadultswithlearningdisabilitiesknownto councilsinpaidwork;
– theproportionofadultswithlearningdisabilitiesknownto councilsinsettledaccommodation.
• pSa15(addressthedisadvantagethatindividualsexperience becauseoftheirgender,race,disability,age,sexualorientation, religionorbelief).90progresswillbemeasuredagainsttheextentto whichthegovernmentclosesthegapsintermsofindependenceand choice.
5.32 the New Performance Framework for Local Authorities and Local Authority Partnerships91istheperformanceframeworkforLocal government,andsetsoutthemechanismsandperformanceindicators bywhichlocalauthoritiesandtheirpartnerswillbeexpectedtodeliver thenationalprioritiesdescribedinthepSas.Centraltothisframeworkis anewsetof196nationalperformancemeasures(knownasthenational indicatorSet),whichformthebasisforhowLocalgovernmentreports onagreedpriorities.theseincludethetwoindicatorsetsforpeople withlearningdisabilitiesunderpSa16onemploymentandsettled accommodation.alllocalauthoritiesreportontheseindicatorsannually. theyalsoselectupto35oftheseindicatorswiththeirpartnersto prioritiselocallywithintheirLocalareaagreement(Laa).theLaaisset forthreeyearsandfocusesactivityonthoseindicatorsselected,which havespecificstretchtargetsattached.
5.33 thenhSOperatingframeworksetsoutthenhS’spriorities.thetwo pSaindicatorsaboveareincludedinthenhSframeworkasmeasures
89 www.hm-treasury.gov.uk/d/pbr_csr07_psa16.pdf 90 www.hm-treasury.gov.uk/d/pbr_csr07_psa15.pdf 91 www.communities.gov.uk/publications/localgovernment/nationalindicator
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forlocalaction.thisisbecausethenhSandDhhaverecognisedthe linkbetweengoodhealthandsocialinclusion.thiswillmeanmeeting people’shealthneedsinordertosupportthemintoworkandtobe abletoliveindependently.asindicatedinchapter3,theOperating frameworkfor2009/10reinforcestheimportanceofnhSorganisations’ responsetotherecommendationsoftheindependentinquiryonaccess tohealthcare.
5.34 fromapril2009,thenewComprehensiveareaassessment(Caa)will providethefirstholistic,independentassessmentoftheprospectsfor localareasandthequalityoflifeforpeoplelivingthere.itwillputthe experienceofcitizens,peoplewhouseservicesandlocaltaxpayersatthe centreofthenewlocalassessmentframework,withaparticularfocus ontheneedsofthosewhosecircumstancesmakethemvulnerable, includingpeoplewithlearningdisabilities.reducinginequalitiesand discriminatoryoutcomesforallmembersofthecommunitywillbe centraltoCaa.itwillrecognisetheimportanceofeffectivelocal partnershipworking,theenhancedroleofSustainableCommunities StrategiesandLocalareaagreementsandtheimportanceofcouncilsin leadingandshapingthecommunitiestheyserve.Caawillpayparticular attentiontohowwellpeoplewhoneedsupportareengagedwiththeir localservices.thiswillincludetheneedsandinterestsofpeoplewhoare atgreaterriskoflowerqualityoflifeoutcomes.thiswillbereflectedin howwellmatchedservicesaretotheirneedsandthemeansavailableto thosepeopletoinfluencedecisionsandserviceprovision.
5.35 in2006thegovernmentmadeacommitmenttoundertakeareview ofthehealthandsocialcareperformanceframeworksastheyrelate tolearningdisabilitycommissioningandservices.Wewillpublisha summarypositionstatementsettingouthowtheexistingperformance frameworksrelatetoprovisionofservicesforpeoplewithlearning disabilitiesinspring2009.
5.36 thenationalDirectorswillcontinuetoworkwiththehealthand socialcareregulatorybodiesandotherkeybodiestoexplorewaysof strengtheningdatacollectionandprogressreporting.
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exampleofgood practice
Regional health self-assessment and performance framework
inYorkshireandhumber,theShaBoard,pCtChiefexecutivesand theregionalassociationofDirectorsofSocialServicesapproved aprogrammeofworkdesignedbyindependentconsultantJackie SochockaanddevelopedbytheShaandtheValuingpeopleregional Lead.theframeworkidentifiesfourkeyhealthprioritystrandsagainst whichpCts,healthtrustsandLearningDisabilitypartnershipBoards haveworkedinpartnershiptoassessandmonitorperformanceacross theregion:
1. resettlementandcampusclosure
2. addressinghealthinequalities
3. Makingsurepeoplearesafe
4. ContinuingtoachieveValuingpeopleobjectives
thepilotwaslaunchedbyYorkshireandhumberregioninOctober 2007andisledbyahealthOverviewgroup,chairedbyalocal pCtChiefexecutive,withsupportfromtheShaleadforLearning DisabilitiesandtheValuingpeopleLead.
theframeworkincludesstandardsandkeyobjectives,withcriteria forassessmentandindicativemeasuresorsourcesofevidencedrawn fromkeynationalreports,guidanceandinquiriespublishedinrelation toimprovinghealthcareforpeoplewithlearningdisabilitiesin recentyears.
followingthesuccessofthispilot,severalotherregionshavesignedup tousingitinthefuture.
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Making it happen locally and regionally – key recommended actions
• Valuingpeopleregionalleadswillworktodevelopcapacityand capabilitytoenablerobustcollectionofdatalocallytomeasure progressindeliveringthestrategy.
Key national level actions for government departments and regulatory bodies
• Dhwillcontinuetoworktostrengthentheperformanceframework anddatacollectionmethods.
• thenationalDirectorswillworkwithDhcolleaguesindeveloping thenextversionofthenationalindicatorSet(from2011/12)to ensurethatspecificlearningdisabilitydatacanbecollected.
• thenationalLearningDisabilityprogrammeBoardwillreceiveand respondtodataaboutprogress,viatheregionalboards,andthe Valuingpeopleteamwillcollatethisdata,identifypotentialproblem areasandagreewiththeregulatorybodieshowbesttorespond.
127 Valuing PeoPle now: a new Three-Year STraTegY for PeoPle wiTh learning diSabiliTieS
TheDeliveryPlan
5.36 delivering the outcomes for people with learning disabilities and their families relies on the development, implementation and monitoring of coherent and strategic plans at national, regional and local levels. ‘Making it happen’ is a task for central and local government, the nhS, housing providers, employment specialists, other statutory agencies, advocacy groups, and the community, voluntary and independent sectors. at every stage, locally and nationally, it is vital that people with learning disabilities and family carers are fully involved.
5.37 a comprehensive delivery Plan is being published alongside Valuing People Now.92 This sets out the governance structures and actions, with timescales and responsibilities, necessary to support the implementation of Valuing People Now, nationally, regionally and locally. This will include the dissemination of a range of resources, including toolkits and guidance. in the spring, we will also produce a summary position statement setting out how the existing performance frameworks relate to provision of services for people with learning disabilities.
5.38 Valuing People Now is a restatement of an existing policy and much of its success relies on the implementation of other policies and legislation, as they relate to people with learning disabilities. what is needed to ensure change happens is action to:
•� strengthen/improve existing practice;
•� ensure that all people with learning disabilities are fully included;
•� develop and deliver additional, enhanced, joined-up or more flexible services and structures; and
•� support, monitor and measure all of the above.
5.39 Many of the actions in this strategy are not about new initiatives. They are about ensuring compliance and best practice. To this end, there is no substantial additional funding to support the implementation of Valuing People Now.
92� Valuing People Now: The Delivery Plan. department of health (2009).
Overallpolicy Relatedlegislation, Waysof objective policies,strategiesor measuring
initiatives progress
Allpeoplewithlearningdisabilitiesandtheirfamilieswill:
benefit from Valuing Carers Strategy, dh 2007; JSna, Caa People Now race relations act, 2005; equalities
disability discrimination act, Commission 2005; Children’s Plan, dCSf, 2007; Children’s Plan one Year on
have greater choice independent living Strategy, PSa 15 and control over their 2008; lives and have support Putting People first; health to develop person and Social Care act, 2008; centred plans user-led organisations;
aiming high for disabled Children, 2007
128 ChaPTer 5: Making iT haPPen
5.40 for each of the next three years, key priorities will be set in order to ensure that Valuing People Now is implemented and embedded in all areas. Progress will be reviewed at the end of each year and that review will inform the setting of priorities for the subsequent years. national and regional support for local implementation will focus on the annual priorities.
Keypolicyobjectivesfor2009–12
5.41 The following 15 policy objectives are taken from the preceding sections of the strategy.
Overallpolicy objective
Relatedlegislation, policies,strategiesor initiatives
Waysof measuring progress
get the healthcare they need and the support they need to live healthy lives
dh response to independent inquiry, Healthcare for All, 2008;
disability discrimination act, 2005;
High Quality Care for All: NHS Next Stage Review, dh 2008;
dementia Strategy (forthcoming);
end of life Care Strategy, dh 2008
nhS operating framework: vital signs indicator (health checks)
Care Quality Commission
have an informed choice about where, and with whom, they live
Communities in Control: real people, real power, Clg 2008
PSa 16 accommodation
have a fulfilling life of their own, beyond services, that includes opportunities to work, study, and enjoy leisure and social activities
national Minimum Care Standards, 2000;
Carers Strategy, dh 2008;
Progression through Partnership, dfeS 2006;
Care Quality Commission
JSna, Caa
be supported into paid work, including those with more complex needs
dwP green Paper on welfare reform, 2008
dwP consultation on disability employment services, 2008
employment Strategy (forthcoming)
PSa 16 paid work
have the choice to have relationships, become parents and continue to be parents, and be supported to do so
human rights act, 1998;
independent living Strategy, 2008
Valuing PeoPle now: a new Three-Year STraTegY for PeoPle wiTh learning diSabiliTieS 129
Overallpolicy objective
Relatedlegislation, policies,strategiesor initiatives
Waysof measuring progress
be treated as equal citizens in society and supported to enact their rights and fulfil their responsibilities
human rights act 1998; Joint Committee on human rights, a life like any other? 2008;
independent living Strategy, 2008;
disability discrimination act 2005
equalities Commission
have the opportunity to speak up and be heard about what they want from their lives – the big decisions and the everyday choices. if they need support to do this, they should be able to get it
Valuing People Central advocacy Programme fund;
independent living Strategy, odi 2008
be able to use public transport safely and easily and feel confident about doing so
disability discrimination act, 2005;
Inclusive Mobility, dfT 2005
be able to live in safe environments and feel confident that their right to live in safety is upheld by the criminal justice system
disability discrimination act, 2005;
race relations (amendment) act, 2000;
no Secrets (Safeguarding) guidance, dh (to be revised)
Forservices
130 ChaPTer 5: Making iT haPPen
Overallpolicy objective
Relatedlegislation, policies,strategiesor initiatives
Waysof measuring progress
leadership, delivery and partnership structures are in place that will make sure the outcomes set out in this strategy are delivered
effective commissioning in a way that best supports the right outcomes for people with learning disabilities and their families is ensured
world Class Commissioning programme (dh)
JSna, Caa
The workforces across services are given the appropriate support and training to equip them with the values, skills and knowledge to deliver the Valuing People Now priorities for all people with learning disabilities
adult Social Care workforce Strategy (dh, to be published)
learning disabilities will have a clear position in the new performance frameworks for the nhS and local authorities, and there will be a comprehensive range of data sets and reporting mechanisms
learning disability Performance framework Position Statement (dh, to be published);
2020 Children’s and Young People’s workforce Strategy, dCSf 2008
nhS operating framework
hCC and CSCi, CQC regulatory frameworks
JSna, Caa
Valuing PeoPle now: a new Three-Year STraTegY for PeoPle wiTh learning diSabiliTieS 131
132
Abbreviations and glossary�
133 ValuingPeoPlenow:anewThree-YearSTraTegYforPeoPlewiThlearningdiSabiliTieS
aCPo: associationofChiefPoliceofficers(aCPo)
adaSS:associationofdirectorsofadultSocialServices
Aiming High for Disabled Children
Thisisthetransformationprogrammefordisabledchildren’sservices.
bMe: blackandMinorityethnic
Clg: departmentforCommunitiesandlocalgovernment
Children’s Plan
TheChildren’sPlanputstheneedsoffamilies,childrenandyoung peopleatthecentreofeverythingdCSfdoes.
Children’s Plan One Year On
whathasbeenachievedduringthefirst12monthsoftheChildren’sPlan.
CQC: CareQualityCommission
CSed: CareServicesefficiencydeliveryhelpscouncilstoidentifyand developmoreefficientwaysofdeliveringadultsocialcare.
CSCi: CommissionforSocialCareinspection
Comprehensive Area Assessment (CAA)
fromapril2009CaaswillreplacetheComprehensivePerformance assessmentsusedbytheauditCommission.Caaswillprovidethefirst independentassessmentoftheprospectsforlocalareasandthequality oflifeforpeoplelivingthere.itwillassessandreportonhowwellpublic moneyisspentandensurethatlocalpublicbodiesareaccountablefor theirqualityandimpact.
Crime and Disorder Reduction Partnership/Community Safety Partnership
Statutorybodies–thepolice,policeandlocalauthorities,fireandrescue authorities,primarycaretrusts–withastatutorydutytoworkwithlocal agenciesandotherorganisationstodevelopandimplementstrategies totacklecrimeanddisorder.
CSiP: CareServicesimprovementPartnership(partofdh)
134 abbreViaTionSandgloSSarY
dCSf: departmentforChildren,Schoolsandfamilies
dfT: departmentforTransport
dh: departmentofhealth
diuS: departmentforinnovation,universitiesandSkills
dwP: departmentforworkandPensions
Direct Payments
Thesearecashpaymentsgiventopeoplewithlearningdisabilitiesin lieuofthecommunitycareservicestheyhavebeenassessedasneeding. Theyareintendedtogivepeoplegreaterchoiceintheircare.The paymentmustbesufficienttoenablethepersontopurchaseservices tomeettheirneedsandmustbespentonservicesthatheorshe needs.recipientsofdirectpaymentstakeonalltheresponsibilitiesof anemployer-payroll,meetingtheminimumwageandotherlegislative requirementsandestablishingcontractsofemployment.[Seealso individualandpersonalbudgets.]
Directed Enhanced Service (DES)
inprimarycarean‘enhancedservice’isonenotprovidedthrough essentialoradditionalservices.Theyofferakeytooltohelpprimarycare trusts(PCTs)reducedemandonsecondarycare,withtheirmainpurpose beingtoprovideanopportunitytoexpandanddevelopprimarycare. ‘directedenhancedservice’isonethatmustbeprovidedbythePCT foritspopulation.
135 ValuingPeoPlenow:anewThree-YearSTraTegYforPeoPlewiThlearningdiSabiliTieS
Disability Equality Duty (DED)
adutyintroducedbythedisabilitydiscriminationact2005which requiresthepublicsectortopromoteequalityofopportunityfor disabledpeople,andpublicservantstoconsidertheimpactoftheirwork ondisabledpeopleandtakeactiontotackleinequality.
Disability Equality Scheme
Publicauthoritiesarerequiredtoproduceandimplementdisability equalitySchemes.Statutoryregulationsprescribehowsuchschemesare tobedrawnup.
drC: disabilityrightsCommission
drd: deputyregionaldirectorofSocialCareandPartnerships
Exemplar Sites
Partoftheprogrammesupportingprimarycaretrusts(PCTs)withthe rolloutofpracticebasedcommissioning.anexemplarsiteconsistsofa PCTanduptofivegPpractices.
fe: furthereducation
go: governmentoffice(fortheregions)
gSCC: generalSocialCareCouncil
ho: homeoffice
idea: improvementanddevelopmentagency
Individual Budgets
Thesewerepilotedin2006andinvolvedbringingtogethersixfunding streams:socialcare,SupportingPeople,disabledfacilitiesgrant, independentlivingfunds,accesstoworkandcommunityequipment services.(SeealsodirectPaymentsandPersonalbudgets.)
136 abbreViaTionSandgloSSarY
Joint Improvement Partnership (JIP)
apartnershipoforganisationsinvolvedinimprovingserviceswithin socialcare.PartnersareadaSS,CSiP,CSCi,theenglishCommunity Careassociation,idea,lga,thenhSinstituteforinnovationand improvement,SkillsforCareandSCie.
Joint Strategic Needs Assessment (JSNA)
ThelocalgovernmentandPublicinvolvementinhealthact2007 placesadutyonlocalauthoritiesandPCTstoundertakethese assessments.Thisisaprocessthatwillidentifycurrentandfuturehealth andwell-beingneedsofthelocalpopulation,informingthepriorities andtargetssetbylocalareaagreementsandleadingtoagreed commissioningprioritiesthatwillimproveoutcomesandreducehealth inequalities.
Learning Disability Partnership
Thesearewaysofworkingatalocallevelwhicharebroaderthan learningdisabilityPartnershipboards.
Learning Disability Partnership Boards
ThereweresetupunderValuingPeople(2001)topromotestronger localpartnerships.Membersincludeseniorleadersinlocalauthorities, PCTsandotherlocalservices,aswellasthirdsectororganisations, peoplewithlearningdisabilitiesandfamiliesandcarers.
Local Area Agreement (LAA)
Thesesetouttheprioritiesforalocalareainathree-yearagreement betweencentralgovernmentandalocalarea(thelocalauthorityand thelocalStrategicPartnership(seebelow)andotherkeypartnersat locallevel).Theysimplifysomecentralfunding,helpjoinuppublic servicesmoreeffectivelyandallowgreaterflexibilityforlocalsolutions tolocalcircumstances.
lddf: learningdisabilitydevelopmentfund
lga: localgovernmentassociation
137 ValuingPeoPlenow:anewThree-YearSTraTegYforPeoPlewiThlearningdiSabiliTieS
Local Involvement Network (LINk)
linksaresetuptohelppeopleinfluenceorchangethewaytheirhealth orsocialcareservicesaredelivered.Theyaremadeupofindividualsand communitygroupswhoworktogethertoimprovelocalservices.itis theirjobtofindoutwhatpeoplelikeanddislikeaboutlocalservicesand workwiththepeoplewhoplanandrunthemtohelpmakethembetter.
Local Strategic Partnership (LSP)
Thesearenon-statutorybodiesthatbringtogetherthedifferentparts ofthepublic,private,voluntaryandcommunitysectorsworkingatlocal level.TheleadplayerinanlSPisthelocalauthorityandotherplayers willincludethepoliceandPCT.
MhaC: MentalhealthactCommission
MoJ: MinistryofJustice
National Advisory Group on Learning Disability and Ethnicity
ThefoundationforPeoplewithlearningdisabilitiesco-ordinatesthis advisorygroupwhichhasaremittoadvisethegovernmentonthe changesthatwouldhelppeoplewithlearningdisabilitiesfromblack andminorityethnicgroups.itfocusesonpolicydevelopmentandworks closelywithotherorganisations.
138 abbreViaTionSandgloSSarY
nVff: nationalValuingfamiliesforum
odi: officefordisabilityissues
ond: officeofthenationaldirectors
oTS: officeoftheThirdSector
Overview and Scrutiny Committee
ThismonitorstheactivitiesofalocalauthorityandlocalnhSbodies.
PCT: PrimaryCareTrust
PALS
PatientadviceliaisonServices(PalS).Theseprovideinformation,advice andsupporttohelppatients,familiesandcarers.
Personal Budgets
Theseareanallocationoffundinggiventousersofcommunitycare servicesafteranassessmentatalevelthatshouldbeenoughtomeet theirassessedneeds.Peoplecantakethemeitherasdirectpayments (seeabove)or–whilechoosinghowtheircareneedsaremetandby whom–leavelocalauthoritieswiththeresponsibilitytocommission theservices.ortheycanhavesomecombinationofthetwo.
Public Health Observatory (PHO)
aresourceforenquiry,anobservatorysearchesforandcompiles informationanddatasetsonthenation’shealthand,fromthem, distilstheknowledgetoguideitsimprovement.
Public Service Agreement (PSA)
Theseareagreementsbetweendifferentpartsofgovernmentthatare underpinnedbyasingledeliveryagreementsharedacrosscontributing departmentsanddevelopedindiscussionwithdeliverypartnersand frontlineworkers
139 ValuingPeoPlenow:anewThree-YearSTraTegYforPeoPlewiThlearningdiSabiliTieS
Race for Justice
Thisisacross-governmentprogrammetoimprovethewayinwhichhate crimeisinvestigatedandprosecuted.itisledbytheattorneygeneral andseekstocoordinatetheactivityofallCriminalJusticePartnersand stakeholderstoensureconsistentservice.itconsiderstheresponsefrom theinitialpolicecallhandlingthroughtothecourthearing.
SCie: SocialCareinstituteforexcellence
Sen: Specialeducationalneeds
SfC: SkillsforCare
Sha: Strategichealthauthority
ulo: user-ledorganisation
Thesearelocalorganisationsrunandcontrolledbydisabledpeople, carersandotherpeoplewhousesupport.Theyaimtopromote independentlivingandprovideservicessuchasinformationandadvice, advocacyandpeersupportandsupportinusingdirectPaymentsand individualbudgets.
Vital Signs Indicators
ThesewereintroducedinthenhSoperatingframeworkfor2008/09 asanewapproachtoplanningandmanagingprioritiesnationallyand locally.Therearefivecategories:cleanlinessandhealthcareassociated infections;accesstopersonalisedandeffectivecare;improvinghealth andreducinghealthinequalities;reputation,satisfactionandconfidence inthenhS;andfinance.Primarycaretrustsareexpectedtochoose–in consultationwithlocalpartners–whichvitalsignstoprioritiselocally.
World Class Commissioning
adepartmentofhealthprogrammedesignedtotransformtheway inwhichhealthandcareservicesarecommissioned.ithasfourkey elements:visionforworldclasscommissioning;asetofworldclass commissioningcompetences;anassurancesystem;andasupport anddevelopmentframework.
Valu
ing
Peop
le No
w: A
New
Three-Year Strateg
y for p
eop
le with
learnin
g d
isabilities
Valuing People Now:a new three-year strategy for people with learning disabilities‘Making it happen for everyone’
© Crown copyright 2009
290565a 1p 2k January 09 (CWP)
Produced by COI for the Department of Health
If you require further copies of this title visit
www.orderline.dh.gov.uk and quote:
290565a/Valuing People Now or write to:
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