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Hear Us Out!
Hear Us Out!
Content
1.Youngperson’sforeword 3
2. Introductiontotheproject 4-5
3.Settingthescene 6-7
4.Generalrecommendations 8-9
5.Themedchapters
a. Lackofaspiration 10-13
b. Inclusion 14-16
c. Accessibility 17-19
d. Feedbackandimpact 20-22
6.Conclusion 23
7.Contactinformation 24
Young person’s foreword
Welcometoourpolicybriefingandrecommendations.WearetheVIPERproject,VIPERstandsforVoice,Inclusion,Participation,Empowerment,Research.Wechosethesewordsastheydescribeourprojectandwhatwewanttoachieveforalldisabledyoungpeople.WecallourselvesVipers.
VIPERisaresearchprojectlookingatdisabledchildrenandyoungpeople’sparticipationindecision-making.Whatmakesthisprojectdifferentisthatit’sresearchaboutyoungdisabledpeoplebyyoungdisabledpeople.Wehavebeeninvolvedallthewaythroughthisprojectfromplanningthequestionsthatwereaskedtocarryingoutthefieldworkandanalysingthedata,andnowdevelopingrecommendations.
Beinginvolvedinthisresearchissomethingthatwefoundreallyinterestingandwe’veallenjoyedactuallygettingtodotheresearch.SomeofthestuffthatwefoundoutaboutparticipationfordisabledyoungpeopleinEnglandhassurprisedus,someofwhatwefoundhasdisappointedusandsomehasinspiredus.Onethingweknowforsureisthatmoreyoungdisabledpeopleneedtheopportunitytoparticipateindecision-making.
Fromourexperiencesomeprojectssaythattheyareinvolvingdisabledyoungpeoplebutwhenwelookedintoit,theyoungpeoplewerejusttheretotickabox.Thisneedstochangeandwehopethatthisprojectandourfindingswillhelptocreatethatchange.
ALLyoungdisabledpeoplecan beincludedandparticipate,weknowfromourownexperienceinthisproject.Nowthatneedstobemadearealityforallyoungdisabledpeople
Wewantyoungdisabledpeopletobeempoweredsothattheyunderstandwhatparticipationisandthechangetheycanbringaboutandwewantservicestobeopenandincludedisabledyoungpeopleintheirdecision-making.Youngdisabledpeoplehaveviewsandopinionsthatshouldbeincludedandtakenseriously.
Inthisreport,youwillfindourrecommendationsbasedonourresearchfindings.Wehopethattheserecommendationscanbeturnedintoactiontobegintobringaboutchangeforyoungdisabledpeople’slives.It’stimewewereheard!
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Introduction
VIPERisathree-yearproject,whichstartedinsummer2010,andsetouttoexploredisabledchildrenandyoungpeople’sparticipationindecision-makingaboutservices.
TheVIPERprojectisdeliveredinpartnershipbytheAllianceforInclusiveEducation,TheChildren’sSociety,theCouncilforDisabledChildrenandtheNationalChildren’sBureauResearchCentre.TheprojectispartoftheBigLotteryFundresearchprogramme.Agroupof16youngdisabledpeopleworkwithusasjointresearchersonthisproject.
Thereisnooneagreeddefinitionofparticipation.Inthisproject,wewerespecificallyresearchingdisabledyoungpeople’sparticipationindecisionsaboutservicedevelopmentanddelivery.Wealsomeanthatparticipationisaprocesswheregroupsorindividualscaninfluencedecision-makingandbringaboutchange.
AkeyfeatureofthisprojectisthataswellasresearchingparticipationitisaparticipationprojectitselfasweusedawiderangeofmethodstoensuretheViperswerefullyincludedinthedifferentstagesoftheresearchandplayedacentralrole.
Thisprojectalsoworkswithinthesocialmodelofdisability,whichrecognisesthatpeoplewithimpairmentsaredisabledbybarriersinsociety.
Theaimsoftheprojectare:
• tomaphowyoungdisabledpeopleareinvolvedinstrategicandoperationaldecisionsbyservices
• tounderstandthebarriers,impactsandbenefitsofyoungdisabledpeople’sparticipation
• tounderstandwhatworksforyoungdisabledpeople’sparticipation
• toproduceresourcestohelpprofessionalssupportyoungdisabledpeople’sparticipation.
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Theresearchevidencewascollectedusingavarietyofmethods:
• Aliteraturereviewoftheory,policyandresearchliterature
• Asurveyoforganisations,agencies,servicesandprojectswhichinvolvedisabledchildrenandyoungpeopleindecisionmaking
• Qualitativeresearchin8organisationsandservicesacrosshealth,educationandsocialcaresettingsinthestatutoryandvoluntarysectorinEngland.
Formoredetailedinformationabouttheresearchfindingsandmethodspleaseseeourresearchsynthesisreportandmethodologyathttp://www.councilfordisabledchildren.org.uk/viper.
Thisbriefingisbasedontheresearchfindingsfromthisprojectandoutlinesourrecommendations,whichweredevelopedwiththeVipers.AllquotesinthisreporthavecomefromtheVipersreactionstotheresearchfindings.
Forthepurposesofthisreport,whenwetalkaboutservices,wemeananyservicesthatdisabledyoungpeopleuse;includingeducation,health,socialcare,youthservices,transportandleisure.
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Setting the scene
Disabledyoungpeoplehavethesamerightsasnon-disabledyoungpeopletoparticipateindecisionsandissuesthataffectthem.Thisrightishighlightedinarticles12and23intheUNConventionontheRightsoftheChild(UNCRC)andoutlinedspecificallyinarticle7oftheUNConventionontheRightsofPersonswithDisabilities(UNCRPD).Youngpeople’sparticipationisalsoalreadysupportedbyclearstatutoryresponsibilitiesfromtheChildrenAct1989and2004.
WhilstgovernmentprogrammeslikeAimingHighforDisabledChildren(2008-2011)didnotcontainring-fencedfundingforyoungdisabledpeople’sparticipation,opportunitiestoparticipatehaveincreasedattimeswheretherehasbeenanexplicitfocusondevelopingdisabledchildren’sservicesanddutiestoinvolvedisabledyoungpeopleindecision-making.However,evidencefromthisprojectsuggeststhatwhenthesefundingstreamswerenolongerring-fenced,manyoftheparticipationopportunitiesstoppedtoo.
Recentproposalstoreformsupporttodisabledchildren,youngpeopleandtheirfamilieshavebeensetoutinthegovernment’sChildrenandFamiliesBill1.TheprecedinggreenpaperSupport and Aspirations: A new approach to Special Educational Needs and Disability recognisedthatdisabledyoungpeople’sparticipationispatchy,andthatthequalityofservicesisimprovedwhenyoungpeoplecanparticipate.Italsocommitstogivinggreatercontroltoyoungdisabledpeopleandmakingthemthe‘authoroftheirownlifestories’.
Furthermore,theHealthandSocialCareAct(2012)includesadutytoinvolvepatients,carersandthepublicindecisionsabouthealthservices,andstatesthattheirviewsmustbetakenintoaccountincommissioningservices.Thismustincludetheviewsofyoungdisabledpeopletoo,aswefoundlittleevidenceoftheirparticipationindecision-makinginhealthservices.
1TheseproposalswillbeintroducedintoparliamentthroughtheChildrenandFamiliesBill2013,formoredetailedinformationabouttheproposalspleasegotohttps://education.gov.uk/childrenandyoungpeople/send/changingsen
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VIPERhopetheevidenceinthisresearchprojectdemonstratestheimportanceofmakingsuredisabledchildrenandyoungpeopleandthosewithspecialeducationalneeds(SEN)haveopportunitiestoparticipateindecisionsaboutthedevelopmentanddeliveryofservices.ThisisparticularlyimportantfortheSENandDisabilityreformprogramme,whichwillreorganisehowyoungdisabledpeoplereceivehealth,educationandsocialcareservices.
Foramoredetailedaccountofthepolicycontextofdisabledyoungpeople’sparticipationinEngland,pleaserefertoourliteraturereview,availablefromhttp://www.councilfordisabledchildren.org.uk/viper.
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General recommendations
Thegovernmentcandemonstratetheircommitmenttodisabledyoungpeople’sparticipationby:
• Puttingdisabledchildrenandyoungpeople’sparticipationattheheartofthecurrentSENDreformsby:
a. GivingitaclearmandateintheChildrenandFamiliesBillprimarylegislation
b. SupportingandchallenginglocalauthoritiesbymakingsureregulationsandtheCodeofPracticetosupporttheBillhaveclearguidanceabouthowtoinvolvedisabledyoungpeople’sindecisionsacrossthewholeoftheSENDreformagenda.
• Providingfinancialresourcestosupportthedevelopmentofsustainableparticipationstructuresfordisabledyoungpeople.
• Ensuringyoungdisabledpeoplehaveopportunitiestobefullyincludedinthedevelopmentofnationalpolicy.
Localgovernmentscandemonstratetheircommitmenttodisabledchildrenandyoungpeople’sparticipationbyworkingwithyoungdisabledpeopleto:
• Createsustainablelocalparticipationstructuresforyoungdisabledpeopletotakepartindecision-makingaboutservices.
• Makesurethattheservicestheyprovidepromotedisabledyoungpeople’sparticipationanddemonstratehowtheyhaveinvolveddisabled
Vipers: What we want
Governmenttotakeactionandsupportdisabledchildrenandyoungpeople’sparticipation.
Health,educationandsocialcareservicestoincreaseopportunitiesfordisabledyoungpeopletoparticipateindecisionmakingandmakesuretherightsupportisavailableforparticipation.
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youngpeopleintheirplanninganddesign.
• MakesurethatallyoungdisabledpeoplearefullyinvolvedinassessmentsandtheplanningandreviewingoftheirEducation,HealthandCareplan.
• Makesurethatyoungdisabledpeopleintheirlocalareahaveopportunitiestobeinvolvedindeveloping,monitoringandevaluatingtheLocalOffer.
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Lack of aspiration
Thisseemstobeduetoamisconceptionthatdisabledyoungpeoplearenotabletoparticipateindecision-makingandduetolowaspirationsabouttheirinvolvement.Oftenparentsandcarersareaskedfortheirviewsinsteadoftheyoungperson.Theoutcomeofthisisthatdisabledyoungpeoplemaynotlearnhowtomakedecisionsabouttheirlivesuntiltheybecomeyoungadults.
Participationistheprocessbywhichindividualsandgroupsofindividualscaninfluencedecision-makingandbringaboutchange.However,ourresearchsuggeststhatwhendisabledyoungpeopledoparticipateitisusuallyinsegregatedgroupsmakingdecisionsabouttheirownlivesandnotstrategicleveldecisionsaboutservices.Whentheydoparticipateindecisionsaboutservicesitisusuallywhentheservicesarebeingplannedortogivetheirviewsonservicestheyuse,ratherthaninthedesignandcommissioningofservices.
Wefoundparticipationindecisionsaboutrecruitingstaff,informationmaterialsorpolicieswaslesscommonandwefoundonlyafewexampleswheredisabledyoungpeoplehadanyrealcontroloverwhatdecisionstheyparticipatedin.Adultsandprofessionalsusuallydirectwhatdecisionsdisabledyoungpeoplecanparticipatein.
“Services don’t understand participation. People in charge need to understand what participation is.”
Only1in3organisationsorserviceswhorespondedtooursurveysaidthatthemainreasonforinvolvingdisabledyoungpeoplewastoinfluencedecisions,whilsttheyoungpeoplewespoketothoughtthatdisabledyoungpeopleshouldplayanimportantroleininfluencingservicesforotherdisabledyoungpeople.
Key research finding
Many disabled young people are not given the chance to take part in both individual decision-making, for example, having a say about the care they receive; or strategic level decisions, for example, commissioning services.
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“... should be about change and not just about skills and experiences.”
Whilstdecision-makersmostlyinvolveddisabledyoungpeopletoempowerthemandtooffernewskillsandexperiences,manydisabledyoungpeoplethemselvesreportedthattheyusuallygotinvolvedinparticipationprojectsbecausetheywantedtomakefriendsand“getoutofthehouse”.
Disabledyoungpeoplewespoketoenjoyedbeingpartofagroupandsawitasagoodwaytosocialise,however,theyrecognisedthedifferencebetweenopportunitiestoinfluencelocalservicesandsocialactivities.Therewasasenseofservices‘lettingpeopledown’ifopportunitieswereadvertisedas‘participation’,butallyoungpeoplegotoutofitwasachancetosocialise.Whileservicesdonotintendforthistohappen,theymustbeclearabouttheparametersoftheopportunitiestheyofferandbeclearaboutthedifferencebetweensocialactivitiesandparticipation.Theyalsoneedtosupportdisabledyoungpeopletounderstandhowtheycanbeinvolved.
“If young people want to do that [socialise] they should have the right to do that but it shouldn’t be called participation and shouldn’t be funded for that – organisations could just be ticking a box but not doing good participation.”
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Centralgovernmentmust:
• Leadbyexampleandgivedisabledchildrenandyoungpeople’sparticipationaclearmandateintheChildrenandFamiliesBill
Strategicmanagersmustmakesurethat:
• Staffwhosupportyoungdisabledpeople’sparticipationhavetrainingtounderstanddisabledyoungpeople’srighttoparticipate.
• Staffwhosupportyoungdisabledpeople’sparticipationhavetraininginthesocialmodelofdisabilityandinclusiveparticipationmethods.
• Formalandinformalopportunitiesexistlocallyfordisabledyoungpeople’sparticipation.
Servicesmustmakesurethat:
• Thereisbetterinformationavailableforyoungdisabledpeopleabouttheparticipationopportunitiesonoffer.Thisinformationshouldshowyoungpeoplewhatparticipationopportunitiesarelikeandhowtheirparticipationcanmakeadifference.
• Thereareopportunitiesforyoungerdisabledchildrentoparticipateindecisionmakingaboutservices.Thisallowsdisabledchildrenandyoungpeopletogainskillsandconfidencetoparticipateindecisionsastheygetolder.
• Thereisinformationtohelpyoungdisabledpeopleunderstandabout
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Vipers: What we want
Everyonetohaveaclearunderstandingofwhatdisabledyoungpeople’sparticipationmeans.
Alldisabledyoungpeopletohaveopportunitestoparticipateinalldecisionsabouttheirlives,includingindividualandstrategicleveldecisions.Theirparticipationshouldinfluencedecisionsandbringaboutchange.
whytheyareparticipatingandwhatitwillachieve.
• Thereareopportunitiesforyoungdisabledpeopletosocialiseseparatefromopportunitestoparticipateindecision-making.
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Inclusion
Ourfindingssuggestthatthisisduetoaperceptiontheyaretoohardtoworkwith.Wheredisabledyoungpeopledoparticipateindecisionmakingitisusuallyolderyoungpeoplewhoareinvolved.Forexamplewefound“youngpeople”wereoftenaged20–30.Somegroupsofdisabledyoungpeoplewerelesslikelytoparticipatethanothers,forexampledisabledyoungpeopleincare,disabledyoungpeoplefromBlackandMinorityEthnicgroupsandthosewithmoresignificantaccessneeds.
“It should not matter whether a young person can speak, they should be asked for their views – they can express themselves using body language and expressions.”
“If [you’re] not involved in decisions about your own life then this is wrong – [non-disabled] people are.”
Intheeightareaswhereweinvestigatedparticipation,therewereusuallysmallnumbersofdisabledyoungpeopleparticipatingindecision-making,usuallyaround10-20disabledyoungpeople.Someofthesegroupsdidaskfortheviewsofawidergroupofdisabledyoungpeople,althoughthesewereofteninspecialschools.
“Everyone needs more opportunities to participate including in special schools and mainstream schools as they don’t get a chance and they get left out.”
Whendisabledyoungpeopleareinvolvedthisisusuallyindecisionsaboutservicessuchastransitiontoadultservices,shortbreaksorleisureservices.Theyarelesslikelytobeinvolvedindecisionsaboutotherservicesforexample,healthoreducation.Moreovertheyareevenlesslikelytobeinvolvedindecisionsabouttransportorthelocalenvironment,
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Key research finding
Many disabled young people are still being excluded from decision making and are not supported to participate in inclusive participation opportunities.
withprofessionalsreportingthatitisdifficulttoinvolvedisabledyoungpeopleindecision-makingacrossallservices.Thiscouldalsobeduetothefactthatyoungdisabledpeoplearemorelikelytobeinvolvedinsegregatedparticipationopportunitiesthaninfullyinclusivegroups.
Furthermore,disabledyoungpeopledon’toftengetthechancetotakepartindecision-makingatastrategiclevel.Forexample,theydon’tregularlygettomeetthoseingreaterpositionsofauthoritysuchasmanagersandcouncillors.
“If adults only decide what decisions they can participate in this is limiting the young people, let young people decide, involve them from the start.”
The social model of disabilityOurfindingssuggestthatwhereparticipationishappeningitisusuallybecauseofafewpeople’spositiveattitudestowardsit,andusuallyonlyhappensinafewservices.Positiveattitudestodisabledyoungpeople,andparticularlystaffbothunderstandingdisabledyoungpeople’srighttoparticipateandworkingtothesocialmodelofdisabilityarekeytotheirsuccessfulparticipation.
“...makes sure that teams work on a level playing field. Instead of you working around services, services work around you”
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Centralgovernmentmust:
• Supportlocalparticipationopportunitiesbyprovidingfinancialresourcestocreatesustainableparticipationstructuresfordisabledyoungpeople.
Servicesmustmakesurethat:
• Theydevelopskillstomakesurethatalldecision-makingopportunitiesarefullyinclusiveofdisabledyoungpeople.
• Arangeofdifferentopportunitiesforyoungdisabledpeopletoparticipateindecisionmakingareonoffer.Forexample,instaffrecruitmentanddesigninginformationforotheryoungpeople.
• Opportunitiesforyoungdisabledpeopletoparticipateinarangeofservicesareonoffer.Forexample,education,youth,health,colleges,leisure,transport,employmentandadvocacyservices.
• Disabledyoungpeopleareinvolvedindecisionsaboutservicesfromtheverybeginning,notoncedecisionsarealreadymade.
• Youngpeople’sboardsandadultboardsworkalongsideeachothertomakedecisionsaboutfundingandservices.
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Vipers: What we want
Allyoungdisabledpeopletoparticipateindecisionsabouttheservicestheyuse,includingmainstreamservicesandopportunities.Thisshouldincludeyoungdisabledpeoplewhohavecommunicationneeds,older(18–25)andyounger(under12)disabledyoungpeople.
Youngdisabledpeopleandnon-disabledyoungpeopletohaveopportunitiesparticipateindecisionmakingtogether.
Accessibility
Ourfindingssuggestthataccessissuesmeanthatsomedisabledyoungpeoplearestillexcludedfromparticipatingindecision-making.Forexample,projectsexcludingpeoplewithhighlevelsofsupportneeds,roomsnotbeingbigenoughfortwowheelchairusers,youngpeoplenotbeinggivenenoughinformationornoticetobeinvolvedproperly,ortheircommunicationrequirementsnotbeingmete.g.BSL.Issueswithfundingforprojectsalsomeanthatsometimesopportunitiestoparticipateareonlyopentothoseyoungpeoplewhoseparentsorcarerscanhelpwithtransportarrangements.
“There needs to be improvements in accessibility to support disabled young people’s participation.”
Disabledyoungpeopleusuallyparticipateindecisionmakingin‘formal’wayssuchasinmeetingsorone-offconsultations.Surveyswerealsoapopularwayofaskingdisabledyoungpeoplefortheirviews.Inordertobeeffective,methodsfordisabledyoungpeople’sparticipationneedtobeappropriatetotheneedsandinterestsoftheyoungpeople,whichmayrequireusingarangeofdifferentandcreativemethods,suchasartsordrama,aswellasduringinformalconsultationprocessesalongsidemoreformalmethods.TheVipersinvolvedinthisprojectwere
“...surprised that services think that surveys are a good way to involve disabled young people as these are limited and you need to get quantitative and qualitative data – they are using them because they are cheap. They should have regular meetings rather than just surveys and use other methods.”
Ourresearchalsofoundthatlocalauthoritiesoftencommissionthevoluntaryandcommunitysectortodelivertheirparticipationprojectsfor
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Key research finding
Basic access requirements to support disabled young people’s participation are too often not being met.
disabledyoungpeople.Whilethisbringsinexpertise,itmayalsomeandisabledyoungpeople’sparticipationisnotproperlyembeddedinthelocalauthority,andthereforeunabletobringabouttheculturalchangeneededtoensuredisabledchildrenandyoungpeople’svoicesinfluencestrategicdecisions.
Centralgovernmentmust:
• Promotehowservicescanuseexistinglawsandguidancetosupportdisabledyoungpeople’sparticipation,forexample,theEqualityActPublicSectorEqualityDuty,UNConventionontheRightsoftheChild,andUNConventionontheRightsofPersonswithDisabilities.
Strategicmanagersmustmakesurethat:
• Disabledyoungpeopleareinvolvedinplanningdecisionsaboutlocalandaccessiblepublictransport,sothattransportissuesdonotbecomeabarriertoyoungdisabledpeople’sparticipation.
• Clearinformationforyoungdisabledpeopletocomplainaboutandthereforeimproveservicesthatdon’tworkforthem,includingcomplaintsaboutlocaltransport.
• Youngdisabledpeoplearegiventheaccessibleinformationtheyneedtoparticipateinlocaldecisionmakingopportunities.Thisshouldincludeinformationaboutwhatopportunitiesareavailablelocally,howtoaccessopportunities,andwhatsupportisavailabletohelpthemunderstandinformationandoptions.
Servicesmustmakesurethat:
• Arangeofdifferentandaccessiblemethodsareusedtomakesureawidegroupofyoungdisabledpeoplecanparticipate.
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Vipers: What we want
Servicestomeetyoungdisabledpeople’saccessneedsincludingdisabilityandage-appropriatesupportandtrainingtoparticipateindecisionmaking.
• Moresupportisavailableforparentsandpersonalassistantstounderstanddisabledyoungpeople’sparticipation,whatopportunitiesareavailableandhowtheycansupportyoungpeopletobeinvolvedinlocaldecisionmakingintheirownright.
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Feedback and impact
Thismeansitisdifficultforthemtoknowwhethertheyhavebeenlistenedtoandiftheirviewshavemadeadifference.Someyoungpeopletoldusthatsometimesitfeltliketheywereaskedfortheiropinionafterthedecisionshadalreadybeenmade,orwerenotgivenenoughnoticetobeinvolvedproperly.
“When there is no feedback it might be a cover-up when things don’t work. If young people do not know what has happened it’s not proper participation.”
“It’s wrong to involve young people once the decision has already been made – how would they like it?”
Disabledyoungpeoplefeelitisimportantthattheyareinvolvedindecision-making.However,noteveryonewespoketocouldseewhatdifferencebeinginvolvedhadmadetodecisionsorservices.Wefoundonlyafewexampleswheredisabledyoungpeopleparticipatedinstrategicdecisions.Itwasalsohardtofindexampleswheredisabledyoungpeoplewereinvolvedinnationalpolicy.
“What’s the point if you aren’t told what happens to the decision… should be told good news and bad news.”
Listeningtodisabledyoungpeopleisvitaltoensureappropriateinformation,adviceandguidanceisproducedforotherdisabledyoungpeoplelocally,andthatservicescanimproveprovisionforalldisabledyoungpeople.
“The more disabled young people take part the more it will lead to better services.”
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Key research finding
Disabled young people are not always told what happened after they have participated.
Ourresearchdidhighlightsomeexampleswheredisabledyoungpeople’sparticipationmadeanumberofchangestoservices.Forexample,betteraccess,newsportsactivities,introductionofstaysafecards,bettersexeducationandtheintroductionofanewservicetosupportdisabledyoungpeopletoachievetheirowngoals.Whendisabledyoungpeoplehaveparticipatedindecisionsandwerelistenedto,thisledtobetterservices,moreinclusion,positiveattitudesandbetterrelationshipsbetweenadultsandyoungpeople.
Thislearningneedstofeedthroughtohowservicesworkjointlyandworkwithdisabledyoungpeopleaskeystakeholderstoimprovecommissioningofserviceslocally.OurevidenceindicatesthatdisabledchildrenandyoungpeoplewereinvolvedsuccessfullyinthecommissioningprocessunderAimingHighforDisabledChildreninlocalauthoritiesandthisworkshouldcontinue.
“People at the top should spend more time with disabled young people as they don’t know our needs; they haven’t got the experience to make the decisions.”
Fordisabledyoungpeople’sviewsandexperiencestoinfluencecommissioningofservicesandlocalandnationalpolicydevelopment,theimpactoftheirparticipationmustberecognised,valuedandevaluated.
“Keep listening to the young people they are working with, it needs to be an ongoing process.”
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Centralgovernmentmust:
• SupportlocalauthoritiesbymakingsurethatanyRegulationsandCodesofPracticetosupportlegislativechangesincludeclearmessagesabouttheimportanceofdisabledyoungpeople’sparticipationinreformagendas.
• Provideclearguidanceonhowtoinvolvedisabledyoungpeopleinstrategicdecision-makinglocally.Thiscouldincludeindicatorstomeasuretheperformanceofthedevelopmentofinclusiveparticipationopportunities.
Strategicmanagersmustmakesurethat:
• Thereareopportunitiesforstrategicdecisions-makerstomeetdisabledyoungpeopleintheirlocalareaandheartheirviewsaboutservices.
• Disabledyoungpeople’sparticipationiscelebratedlocally,especiallywhenitmakesapositivedifferencetolocalservices.
• Localfeedbackandaccountabilitysystemsareinplacetoensurethatprofessionalstakeonboarddisabledyoungpeople’sviewswhenmakingdecisionsabouttheireducation,careandsupport.
Servicesmustmakesurethat:
• Goodpracticeondisabledyoungpeople’sparticipationissharedlocally.
• Disabledyoungpeopleknowwhentheirparticipationhasmadeadifferenceandhowithasimprovedthingsforotheryoungpeople.
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Vipers: What we want
Disabledyoungpeopleareinvolvedinstrategicdecisionsaboutservices,forexample,decidingwhatservicestocommission.
Disabledyoungpeoplehaveproperfeedbackaboutthedifferencetheirparticipationhasmade.
Conclusion
Weareexperiencingsignificantpolicyandlegislativechangesacrossgovernmentdepartmentsthatwillfundamentallychangehowservicesfordisabledchildrenandyoungpeoplearedesignedanddelivered.Thesechangesinclude(butarenotrestrictedto)theSENDreformagendaintheChildrenandFamiliesBill;theHealthandSocialCareAct;thetransferfromDisabilityLivingAllowancetoPersonalIndependencePayments;RaisingtheParticipationAge;andalsoimplementationandmonitoringofArticle7oftheUNConventionontheRightsofPersonswithDisabilities.
Disabledchildrenandyoungpeoplehaveakeyroleindevelopingproposalsanddesigningmoreinclusiveservicesthatmeettheirneeds.Whiletherehasbeensomeprogressmadeindisabledyoungpeople’sparticipationlocally,ourfindingsshowitisstillnotembeddedinstrategic,servicelevelorindividualdecision-making.Barriersstillexistthatpreventdisabledyoungpeople’sparticipationinstrategic,servicelevelandindividualdecisions.Theseincludealackofunderstandingofwhatparticipationisandhowyoumakeithappen,lackoffunding,inclusivepractice,resources,timeandtraining,andlackofconsistentsystemsandstructures.
However,asthesystemchangesfordisabledchildrenandyoungpeoplewehaveanunprecedentedopportunitytoworkinpartnershipwithyoungpeopletoensurethatafuturesystemisonethatworksbestforthemandsupportsthemtobecomethedisabledadultleadersoftomorrow.Wecanonlydothisbymakingsuretheyhaveaccesstoinclusiveparticipationanddecisionmakingopportunitiestoday.
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Contact information
AllianceforInclusiveEducation336BrixtonRoad,London,[email protected]://www.allfie.org.uk/
CouncilforDisabledChildrenNationalChildren’sBureau8WakleyStreet,London,[email protected]://www.councilfordisabledchildren.org.uk/
NationalChildren’sBureauResearchCentre8WakleyStreet,London,[email protected]://www.ncb.org.uk/policy-evidence/research-centre
TheChildren’sSocietyEdwardRudolfHouse,MargeryStreet,London,[email protected]://www.childrenssociety.org.uk/
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