shaping children's services together

ShapingChildren’sServicesTogether

Contents03 Foreword 04 Introduction08 ForParents28 ForProfessionals38 GlossaryofTerms40 Usefulorganisations42 ReferencesandPublications44 Acknowledgements45 Disclaimer46 Appendices

02 Shaping Children’s Services Together

Foreword

Each year, Ambitious about Autism is contacted by hundreds of parents and carers from all over the country seeking help and support to secure appropriate education for their children with autism. Large numbers of parents1 across the country have shown they are keen to campaign for better provision for children with autism in their area.

Atthesametime,parentsoftenfindthemselveslostinamazeofbureaucracy,ajungleofjargonandanoceanofacronymsintheirquesttoimprovethelivesoftheirchildren.

Theyfrequentlyfeelasiftheyneedtolockhornswithlocalauthorities2,shouttomakethemselvesheardandkeeppromotingtheirindividualcasetogetanywhere.

What’smore,manylocalauthorityprofessionalscanalsofeelfrustratedandwanttodoeverythingtheycantoimproveservices.

Soinsteadofbattlingawayinisolation,witheachpartyfightingforthesamecause,onlytoendupinpointlessbattleswitheachother,doesn’titmakemoresenseforparentsandprofessionalstoworktogether?

Thisbookadvocatesacollaborativeapproachbetweenlocalauthoritiesandparentsbasedonmutualrespect,trustandempathybecauseit’sbeenproventhateffectivepartnershipworkingproducesawin-winsituationforparentsandlocalauthorities.

Forparents,thisbookisapracticalguidetoencouragethemtogetinvolved.Ithighlightsthebenefitsofjointworkingtoeffectchange,offeringtipsonhowtobecomeastrongervoicerepresentingtheneedsofchildrenwithautismandtheirfamilies.

Forprofessionals,itprovidesaguidetoworkingwithparentsandparentgroupssothatservicesareshapedby,andsensitiveto,theneedsofchildren,youngpeopleandfamilieswithautism.Itwillinformlocalauthoritystaffastheydeveloptheirskillsinworkingcollaborativelywithparents.

Itaimstoofferaninsightintowhatparentscanofferintermsofimprovingservices,andshowsthat,ifparentsarestakeholdersinthoseservices,theyaremorelikelytobetterservetheneedsofthosethatusethem.

Withcasestudies,toptips,templatesforletters,formsandotherresourcesforparentsandprofessionals,wehopethisbookbecomesaninvaluabletoolinstrengtheningtheparent/professionalrelationshipthatissovitaltosecuringthebestpossibleservicesforchildrenandyoungpeoplewithautism.

Shaping Children’s Services Together 03

1. Theterm‘parent’willbeusedtomean‘parentsandcarers’.

2. Theterm‘localauthority’willbeusedtomeanlocalcouncilsandotherorganisationsthatcommissionanddeliverchildren’sservices.

Introduction

Autism, is a lifelong neurological condition and affects over 100,000 children and young people in the UK. Children affected by autism often find basic communication and social interaction difficult and stressful, and some cannot speak. Many will also experience other, often complex, conditions which mean they require local authority services to reach their full potential.

In2005,PACE3publishedThePACEParents’Handbook:ConstructiveCampaigningforAutismServiceswhichsetoutthefollowingtheory:ifparentscancampaignconstructivelyratherthaninanadversarialmannerwithlocalauthorities,theendresultwillbeimprovedservices.Aseducationistheonlyeffectiveinterventionforchildrenwithautism,campaigningforhighqualitychildren’sservicesisessential.

Ambitious about Autism,formerlytheTreeHouseTrust,spentthreeyearsdevotedtoaprojectcalledtheConstructiveCampaigningParentSupportProject(knownasPSP)whichintendedtotestthattheory.Thisbookisintendedtosharetheextensivelearningfromthatinitiativeandprovideaneasy-to-useframeworkforparentsandlocalauthoritiessotheycanworktogetherconstructively.

ThePSP,whichranbetween2006and2009andwasfundedbytheDSCF,4sawAmbitious about Autismworkingwith10parentcampaigninggroupsindifferentlocalauthoritiesacrossEngland.5Theprojectaimedtocreateconstructivechannelsofdialoguewitheachlocalauthoritytofacilitategenuineconsultationontheshapingofautismservices.

Ininterviewswithparentsinvolvedintheprojectitwasclearthattheyfelttheyfrequentlyhadtobattletogettheservicestheirchildrenneededtoimprovetheirlives.Whenaskedabouttheirrelationshipwithlocalauthorities,parentsusedwordslike,“fight”,“frustration”and“disappointment”.Relationshipswithlocalauthorityprofessionalswereone-sided,leavingparentsfeelingpowerless.TheLambInquiry(2009)confirmedthislackofunderstandingbetweenlocalauthoritiesandparents/parentgroups.

Ithasundoubtedlyprovedthatparentscanbeadynamicandpositiveforceforchangeandthat,whentheyworkinpartnershipwithlocaldecision-makers,theycanbeextremelyeffectiveinimprovingthequalityofservicesforallchildrenandyoungpeopleintheirlocalarea.

MAGIC works in Medway

GaynaSimmondsfoundedtheparentgroupMAGICinMedway,Kentwhichwasinvolvedwiththethree-yearproject.Shesays:

“Lotsofparentswereveryunhappywiththeprovisionofservicesbythelocalauthority.Severalmeetingsbecamebrawlswhichwasverydisturbingforparentswhofeltangryandfrustrated.Nowwe’reequalpartnersandwesitonautismsteeringgroups,butweremainindependent.Wegointoschoolstohelpthembettersupportchildrenwithautism.Weobserveparentsathomeandconveyinformationaboutwhatwe’veseeninawaythatschoolscanaccept.WedothatwithMedway’sknowledgeandapproval.Iwouldn’thavedoneanyofthisifithadn’tbeenforthePSP.Ourrelationshipwiththelocalauthorityisnowbasedonmutualrespect,butthattookuntil2010.Thatwasthebreakthroughyear.”

Wouldn’t it be an achievement if every parent who had a child with autism in every local authority felt as included? And if every professional could tap into the real experiences of parents to improve their own understanding of autism and what families need in terms of support and services?

Thisbookaimstoachievepreciselythat.


03.

05Shaping Children’s Services Together

06

Constructive CampaigningTocampaignmeanstotakeanorganisedcourseofactionasopposedtomobilisingforbattle.Whenitcomestoorganisingimprovedservicesforchildrenwithautism,constructivecampaigningisthepreferredroute.

What does a ‘constructive campaigner’ do?�� TheyareabletoseparateouttheirobjectivestopetitionforbetterservicesforALLchildrenwithautismasopposedtorepresentingonlytheneedsoftheirownchild.

�� Theyputtheiremotionsontheback-burnersothatthefocusissquarelyonthebiggerpicture.

�� Theyworkwithotherparentsbecausetheyunderstandthatgivesthemmoreofavoiceandgreaterinfluencewhenitcomestodealingwithprofessionals.

�� Theyconsiderlong-termobjectives,notshort-termgains.

Who is this book for?Thisbooktreatsparentsandprofessionalsasequalpartnersinthequesttoimprovethelivesofchildrenandyoungpeoplewithautism.Ofcourse,relationshipsbetweenserviceprovidersandparentscanbestrained.Asaparentyoumayfeelthatprofessionalsstopyougettingtheservicesyouneedtosupportyourchildandfamily.Ontheotherhand,asaprofessionalworkinginthelocalauthority,youmayfeelthatparentsandparentgroupsareneversatisfiedwiththeservicetheyreceiveordon’tappreciatethebudgetarypressuresthatyouface.

Whilethisconflictmaybeunderstandable,itstymiesamoreconstructiverelationship.Thisbookpromotesconstructivedialoguebetweenbothgroupsofexperts:parentsandprofessionals,treatingbothasEQUALpartnersinaconstructiverelationship.

ThePSPshowedthatworkinginpartnershipisthebestwaytoensurethatchildrenandyoungpeoplewithautismgetwhattheyneedtoreachtheirfullpotential.Thisismoreimportantthan

everinanageofbudgetarypressuresandreductionsinpublicexpenditure.Efficientservicesrelyonparentsandprofessionalsworkingconstructivelytogether.

The growth of RAGSAnneMyatt,partofRomfordAutisticGroupSupport(RAGS),asupportgroupforparentswhichlaunchedin2003andwasoneofthe10groupsinvolvedwiththePSP,says:

“RAGSwasoneofthe10groupsthattheprojectmentored.WithAmbitious about Autism’s support,we’vegrownandbecomemoreformalasanorganisation.WenowhaveourownofficespaceandI’mapaidworker.Wehavealsobecomearegisteredcharity.Wehavebeeninstrumentalinthepan-disabilitychildren’sforum,whichcameoffthebackofAimingHigh.6I’malsoinvolvedinasteeringgroupforadultswithautism.Threeyearsago,parentswereanafter-thoughtwhentheywereconsideringthings;thelocalauthoritydidn’trecogniseourvalue.HavingAmbitious about Autisminvolvedgaveuscredibilityasanorganisationandopeneddoorsatseniorlevelwithinourlocalauthority.We’renowhavinginfluencestrategicallyandkeymembersinourlocalauthorityhaveshiftedtheirviewsaroundus.”

3. PACE(ParentsAutismCampaignforEducation),agroupfoundedin1998andrunbyparentsofchildrenwithautismwhichthenbecamethePolicyandCampaignsTeamofTreeHouse.

4. DepartmentforChildren,SchoolsandFamilies,agovernmentministrybetween2007–2010.SinceMay2010,it’sbeenreconfiguredandisnowtheDepartmentforEducation,www.education.gov.uk

5. ThelocalauthoritieswereBirmingham,Ealing,Havering,Lambeth,Lincolnshire,Medway,Oldham,Poole,Redcar&ClevelandandStaffordshire.

6. AimingHighforDisabledChildrenwasathree-year£430mfundingpackagewhichranfrom2008.Thefunding,whichcontributestowardsincreasingresourcesfordisabledchildrenandtheirfamilies,cameaboutthroughanationalcampaigncalledEveryDisabledChildMatters(EDCM)whichaimstoachieverightsandjusticeforeverydisabledchild.InDecember2010,EveryDisabledChildMatterssecureda4-year£800mpackagetofundshortbreaks,thehighesteverinvestmentinshortbreaksfordisabledchildren.Morehere:http://bit.ly/dHRAtL

Introduction

Shaping Children’s Services Together

EQUAL Partners

For constructive campaigning to be effective, parents and professionals need to be on an EQUAL footing from the start.

EQUALiswherebothstake-holdersare:

EXPERIENCED:whetherit’saparentwho’sexperiencedinmeetingtheneedsoftheirchild,oraprofessionalwhohasexperienceinservice-provision,bothpartiesbringawealthofexperiencetothetable.

QUALIFIED:bothparentsandprofessionalsarequalifiedtoinputonwhatservicesshouldlooklike.

UNITED:professionalsandparentsareunitedintheirobjectivetoimproveservicesforchildrenwithautism.It’simportanttorememberthatbothpartieswantthesamething!

AUTISMEXPERTS:whetheryou’reaparentwhohasachildwithautismoraprofessionalwhoisskilledinservice-provision,bothpartiesneedtoberespectedasexpertsintheirfield.

LONG-TERMIST:bothparentsandprofessionalsneedtoconsiderlong-termadvantagesovershort-termgain.

Inthisbook,youwillfindtips,casestudyevidence,adviceandresources.Goodluckinsignificantlyimprovingthelivesofchildrenwithautismandtheirfamilieseverywhere.

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“Medway used to be adamant that MAGIC was designed to work against them. Following the PSP they could see that we had the same objectives.” Gayna SimmondsMAGIC, Medway


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“I urge parents and professionals to remember what campaigning means. To me, as a parent, it means positive partnerships and clear communication between everyone involved in the education of a child who deserves the best education to meet their individual additional needs. Assertive and person-centred behaviour can lead to positive steps in understanding the child in an educational setting.” Linda DickinsonLead Parent, Redcar and Cleveland


03.

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For Parents

ThissectionofthebookisdesignedforparentstobuildonlearningsfromthePSPandputthemintopracticeintheirownarea.Itisintendedtobeusedasaguideforparentswishingtocampaignconstructivelytoinfluence:

�� schools

�� localauthorities

�� healthcentresandhospitals

�� socialworkdepartments

�� MPsandnationalgovernment

�� localCouncillorsandlocalgovernment

�� Children’sTrusts

Itisa‘how-to’guideforparentswhoarelookingtodoanyofthefollowing:

�� setup,runorhelpruntheirowngroup

�� communicateregularlywithlocalauthoritiesonservice-provision

�� compileevidencetocreateapersuasiveargumentaboutaparticularaspectofservicedesignanddelivery

�� buildconstructiverelationshipswithprofessionals

�� organiseacampaign

�� engagewiththemediatofocuslocalorregionalattentiononautismissues

�� influencedecision-making

�� lobbynationalgovernment.

Throughoutthesection,therewillbetoptips,casestudiesandrealsituationswhichshowexactlyhoweffective“parentpower”canbewhenitisplanned,targetedandmanagedwell.

A key finding from Ambitious about Autism’s three year Constructive Campaigning Parent Support Project (known as PSP) was this: parents who were equipped with the right training and tools to set up projects and communicate with local authorities had more influence over final service design and delivery.

What RAGS achieved

AnneMyatt,partofRomfordAutisticGroupSupport(RAGS),asupportgroupforparentswhichwasoneofthe10groupsinvolvedwiththePSP,says:

“It’stakenfiveyears,butnow,asanorganisation,weengageasequalpartnerswithlocalauthorities.It’sarespectfulrelationship;it’snotabout‘themandus’anymorebecausewerememberthatit’sapartnershipwhenwe’redealingwithlocalcommissioners.Theprojectwasalsoverybeneficialforusintermsofinfluencingandup-skillingotherparents.”

Two-thirdsoftherespondentswhotookpartinanevaluationofthePSPreportedthefollowingthreemainbenefitsfrombeinginvolvedwiththeproject:

CONFIDENCE:parentshadmoreconfidenceinforginglinkswithlocalauthorities.

CREDIBILITY:parentsweremorearticulateinspellingouttheneedsoftheirchildren.

STRATEGY:parentscouldlookatthewiderpictureand‘de-personalise’theircampaigntoimproveservicesforALLchildrenandtheirfamilieswhowillbeusingthem.

Yettherewereareasofconcernwhichparentshighlightedaswell.

�� Managementandleadershipissueswithinparentgroups.

�� Howlocalgroupscanco-exist,particularlywhenthirdsectorandotherparentgroupshavealreadyforgedlinkswithlocalauthorities.

�� Howtodisseminateresourcesfairlyacrossthecountry,sothatabroadspreadofparentgroupscanbenefitfromtrainingandotherresources.


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For Parents

How-To...?

Thissectionisbrokendownintosixpartsdependingonwhichstageyouoryourparentgrouphavereachedintermsofcampaigning.

Thesub-sectionsareasfollows:

1. How to set up a parent group

2. How to build constructive relationships with professionals

3. How to compile and present evidence

4. How to organise and run a campaign

5. How to raise awareness

6. How to influence decision-making in person

TakealookatwhatparentsinOldhamhaveachieved.

Parents of Oldham in Touch (POINT)

ParentsofOldhaminTouch(POINT),anindependentorganisation,wasofficiallylaunchedinMarch2010.Itprovideshelpandinformationforparentswhohavechildrenwithadditionalneeds.ItalsoseekstoensurethatallparentsofchildrenwithadditionalneedslivinginoraccessingservicesinOldhamaresupportedandhaveastrongvoiceinshapingservicesforthefuture.

Sofar,POINThasheldaninformationeventonshortbreaksprovisionandsummerholidayactivityprogrammesforchildrenwithadditionalneedsandtheirfamilies,aswellasasecondeventabouteducationandtransition.Bothwereattendedbyservice-providers.

OneparentwhoattendedtheeducationeventinNovember2010commented:

“Wow!!!!IwenttothiseventandIwouldliketosayabigTHANKYOUtoallconcerned.Iwasworriedaboutattendingasmychildhashadarecentdiagnosisofaustism.Iwaswelcomedbyawonderfulbubblyladywhotookmetomeetsomeprofessionalsfromateamwhohelpchildrenstayinmainstream.Shethenintroducedmetoaparentwhosechildhasthesameconditionasmine.Youwillneverrealisehowmuchyouhelpedme!Thequestionandanswertimewasalsobrilliant.Thankyou.”


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Parents can make a difference to the services that they as families will access, and a group is far more powerful than a lone voice.

“Theinvolvementofparentsmakesarealdifferencetothequalityofservices.Parentshaveauniqueandvitalunderstandingofwhat‘goodservices’shouldlooklike.Parentscanbringanauthoritativeperspectiveonthegenuineneeds,asopposedtotheperceivedneeds,ofchildrenandfamilies.”7

Think of a parent group as a NET:NETWORK:acommittedgroupthatcanprovideprofessionalswithpowerfulstatisticalorappropriateanecdotalevidenceaboutautism.

EXPERTISE:first-handexperienceofautismandanunderstandingoftheservicesthatchildrenwithautismrequiretoenjoyabetterqualityoflife.

TEAMWORK:anopenattitudetoworkinginpartnershipwithprofessionals,particularlyatthemomentintryingtolimitthedamagethatcutsinlocalservicesmighthaveonchildrenandfamilies.

Why set up a group?ThroughtheAimingHighforDisabledChildrenprogramme8 youmayalreadybeengagingwithanewlyformed,orwell-established,parentcarerforuminyourarea.Thisisagoodplacetoestablishandmaintainregularcontactwithparentcarers.

AimingHighforDisabledChildrenidentifiedparentparticipationaskeytoimprovingservicesforchildrenandyoungpeoplewithdisabilities.Onewayitsupportsparentparticipationisthroughtheestablishmentofparentforums.Eachforumwantsparentsofchildrenwithdisabilitiestohavetheopportunitytohavetheirvoicesheardbylocalserviceproviders.

Autism-specific parent groupsAparentgroupmakesiteasiertopresentthecaseforimprovingallservicesforallchildrenwithautismasopposedtohoninginonindividualcases.Italsomeansthattheworkloadissharedanddifferentskill-setscanbeusedtothegroup’sbestadvantage.Forinstance,ifyoufeelthatwritingisyourstrongsuitbutfindtheprospectofpublicspeakingterrifying,thisbalancecanberedressedinagroupenvironment.

Setting up a group: first steps�� findoutwhatgroupsalreadyexistinyourareaandseeiftheymeetyourneeds.Itmightbeeasiertojoinanexistinggroupasopposedtosettingoneupfromscratch.Therearenoprizesforreinventingthewheel...

�� ifthereisn’tagroupinyourareawhichofferswhatyouwant,advertiseyourintentiontostartonethroughyourchild’sschools,nurseryordrop-intogeneratesupportfromotherparentsYoucanalsouseotherpublicplacestoadvertisesuchaslibraries,aswellasrelevantinternetforums.TherearevariousthreadsontheTalkaboutAutismcommunitywhichisagoodplacetoreachouttootherparentswhomightwanttojoinyourgroup

�� evenifyouonlyattracttheattentionofoneortwootherparentstostart,rememberittakestimetogainmomentum.Don’tloseheart!

�� takethemobilenumbersofothergroupmemberstoremindthemofmeetingsandotherimportantdatesviatext.Remembertoaskthemtospreadthewordtoattractotherparents.

1. How to set up a parent group

7. Watson,A.(2005)ThePACEParentsHandbook:ConstructiveCampaigningforAutismServices.

8. http://bit.ly/ewsaas


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For Parents

What can a group offer?

Itmayfeellikeyouaredonatingalotoftimeandenergytoeithersettingupaparentgrouporhelpingtorunagroup.Buttherewardsarehuge.Onceagroupisupandrunning,itcanprovideanenormousamountofsupportforparents,aswellasprovidingchildrenwithexperiencestheymightnototherwisehave.AsGaynaSimmonds,thefounderofMAGICinMedwaysays:

“Weareself-funding.Parentsmakeadonationforcoffeeandbagelsforoursupportgroupsandwealsoofferactivityweeks,sleep-oversandeventssuchasbowlingandswimmingparties.Wehavethreepartiesayearsothatachildwithautismcanexperiencewhatitfeelsliketogotopartiesbecauseoftenthey’rethekidthatnooneinvitestobirthdayparties.”

What’smore,whennewparentsaresupportedtheyoftenwanttopassontheirknowledgetohelpotherparentsinasimilarsituation.Simmondssays:

“Anytimeparentsareindespairwiththeirchild’seducation,theycan’tsettle.Butoncetheyhavebeenhelped,ninetimesoutoftentheycomebackandsay‘whatcanIdotohelpotherparents?’”

Checklist

Places to contact if you want more information about how to set up or run a group

�� Ambitious about Autism(www.AmbitiousAboutAutism.org.uk)

�� ContactaFamily(www.cafamily.org.uk)

�� EveryDisabledChildMatters(EDCM)(www.ncb.org.uk/edcm/home.aspx)

�� NationalAutisticSociety(www.nas.org.uk)

�� NationalCouncilforVoluntaryOrganisations(NCVO)(www.ncvo-vol.org.uk)

�� NAVCA(www.navca.org.uk)

�� TalkaboutAutism(www.talkaboutautism.org.uk)

�� TogetherForDisabledChildren(www.togetherfdc.org)

Theseorganisationscantellyouaboutexistingcampaigninggroupsinyourareaorcanprovideadviceonhelpingyoustartagroupfromscratch.

Further Reading:

�� ThePACEParentsHandbookwhichcanbeboughtfromAmazon.com9 �� TogetherForDisabledChildren’sParentParticipation:HowToGuide10

Top Tips: Groups

STRUCTURE:ensureyourgrouphasaformalstructure,suchastermsofreference,amembershiplist,andaprocessofelectingachair.

COMMUNICATIONS:ensurethatyoucommunicatewithallyourmembers,aswellasthewidercommunityofparentcarersofchildrenwithautism,viaawebsite,asocialnetworkpage,anonlineforumoranewsletter.

PROMOTION:getyourgroupknownbykeyindividualswithinthelocalauthority.Youcanfindoutwhothesearebycheckingyourlocalauthoritywebsite.

9. Usethislinktopurchasethehandbook:http://amzn.to/fYn0ABAmbitious about AutismwillreceiveasmalldonationforeverycopypurchasedonAmazon.

10. Downloadthefullguidehttp://bit.ly/fcGnA9


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For Parents

Why is building an equal relationship with professionals so important? Atthehubofpartnershipworkingistheparticipationofparentsatastrategiclevelasequalpartnersinthecommissioningofservicesforchildrenwithautism.

InDecember2010,theCoalitionGovernmentsaiditwas‘neitherprescribingnorproscribing’Children’sTrustBoards(CTBs).11Instead,itannounceditsintentiontodevolvemorepowertolocalauthorities.12ThisrenewedemphasisonlocalcommunitiescouldmeanthatCTBspresentrealopportunitiesforparentstoestablishconstructiverelationshipswithdecision-makers.

Becomingequalpartnerswithprofessionals:firststepsCAP: Contact: Ask: PromoteCONTACT:theCommissioningSupportProgrammeformoreinformationabouthowtogetinvolvedinthecommissioningofservicesinyourarea.13

ASK:yourlocalauthorityforthenamesandcontactdetailsofkeyindividualswithinyourChildren’sTrustBoard.

PROMOTE:yourparentcarergroupasagroupofexpertsinautismandagoodsourceofrecruitingparentcarerrepresentativesforthecommissioningprocess.

Top Tip

ConsultTheCentreforExcellenceandOutcomesinChildrenandYoungPeople’sServices’websiteatwww.c4eo.org.uk.ThisorganisationprovidesadviceforChildren’sTrustsonwhatworksintermsofcommissioningeffectiveservices.Thisknowledgewouldstrengthenyourgroup’sabilitytoshowyourunderstandingoftheprocessandyourwillingnesstocontributeconstructively.

“Becoming equal partners with professionals: quality inspections “Asaparentorparentgroup,oneconstructiveuseofyourtimeistodevelopawaytowork“inpartnershiptoimprovequalityassessments“inyourarea.

“Thiscouldincludeanyofthefollowingqualityassessments:“�� The Office for Standards in Education, Children’s Services and Skills (Ofsted) Aspartofitscriteriontoachieveexcellenceinthecareofchildrenandyoungpeopleinschools,Ofstedinspectionsplaceparentinvolvementasanintegralpartofassessingtheabilityofeducationproviderstomeettheneedsofchildrenandyoungpeople.Notonlyareparentviewstakenintoaccountinaninspectionbut,asfrom2010,thetimingoffutureinspectionsofindividualsschoolscanbeinfluencedbytheviewsofparents.

Seize the day!Aqualityinspectionisafantasticopportunitytopersuadeprofessionalstoengagewithyou.Whynotdevelopastrategytoshownotonlyyourcommitmenttopositiveengagementwiththelocalauthoritybutalsothelegitimacyofyourgrouptoactasavoiceforparentsofchildrenwithautism?

Top Tips: Commissioning

Feedingintothecommissioningprocessisoneofthemosteffectivewaysofimprovingservicesforchildrenwithautism.Findoutaboutkeyindividualsresponsibleforcommissioningservices,whomaybesittingonthenewJointCommissioningbodyinyourarea.Emaillocalcouncillorstoaskforrelevantinformation.Oneofthesekeyindividualscouldbeanimportantcontacttopresentyourcampaignmessage.



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11. Children’sTrustBoards(CTBs)weresetupfollowingtheChildren’sAct2004toencourageinter-agencyco-operationamongPrimaryCareTrusts,localauthoritychildren’sservices,schoolsandcolleges.

12. NewApproachforChildren’sTrustBoards,TheDepartmentforEducation,November2010,http://bit.ly/cWuucm

13. TheCommissioningSupportProgrammeprovidesskillsandtrainingdevelopmentforparentssothattheycanbeinvolvedinthecommissioningofappropriateservicesintheircommunity.SinceMay2010,theprogramme’sworkaimstofitinwiththeBigSocietyagenda.Formoredetails,visitwww.commissioningsupport.org.uk


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For Parents

Top Tips: Gathering Evidence

�� Beclearaboutwhatdatayouarelookingforandgatherevidencethatdirectlysupportstheissueyouwanttoraisewiththelocalauthorityoranyotherprofessionals.Thisshouldalwaysbethecasewhenyouarechallengingaprofessional.Forinstance,Ambitious about Autismencouragesparentswhoareexperiencingahighnumberofinformalexclusionsfromschooltouseanexclusionrecordform14 whichteachersfillineachtimetheyaskparentstotakeachildoutofclass,encouragingthemtoquestiontheirjudgment.Parentsshouldalsochallengeaformalexclusionwithaletterstatingtheirintentiontoputforwardtheircaseinperson15

(seebothsampleletterandexclusionrecordinappendices).Keepcopiesofeverythingandnotesofphonecallsmadeonparticulardays,andencourageotherparentstodothesame.Youmayonedayfindyourselfrunningacampaigntoreducethenumberofexclusionsinyourarea,inwhichcasethiskindofevidencecouldhelpbuildapersuasiveargument.

�� Usestatistics.Eitherconductsnapshotsurveysviabriefquestionnairesamongyourparentgrouporpeoplewhoyoualreadyknow(afewquestionsaskedof10and20people)orconsultexistingresources.16

�� Casestudieswhichshowwhatitisreallyliketocareforachildwithautismcanbeinfluentialaspartofawidersetofevidenceandcandemonstratefirsthandtheemotionalandpracticalproblemsfacedbyparentsandcarers.However,usethemsparinglyforgreaterimpact.

�� Keepyourreportconciseandwell-presented.Awordyreportwillbeoff-puttingandlesslikelytoberead.Evidenceisbestpresentedasoneortwo‘strongstats’whichwillgrabattention.

3. How to compile and present evidence

Whatever your campaign aims to address, you need evidence to support your claim that there is a tangible problem which is preventing children with autism from reaching their potential. Your campaign needs to suggest a practical solution, but it must be based on objective and compelling evidence collated from a variety of sources as opposed to one or two personal experiences.

Itmayalsobethecasethatyourlocalauthorityisnotcarryingoutitsownresearchtoevaluatetheeffectivenessoflocalservicesforchildrenwithautism.Professionalsmayalsonotbeawareofgoodpracticetakingplaceinotherareas.

Ifyourgroupcanprovidethelocalauthoritywithcompellingevidencetosupportyourcampaignyouwillhaveabetterchanceofbeingheard.What’smore,yourexpertisecouldhelpyoubuildamoreconstructiverelationshipwiththelocalauthority.

“Local authorities always say they have no money, but if you present evidence-based information in a way which shows ‘this currently costs x but here’s how we could do it for y’ they are more likely to listen.” Gayna SimmondsMAGIC, Medway


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Top Tips: Presenting Evidence

Put together a PLAN

�� PrioritiseIdentifyyourkeycampaignmessageandwhatyouwanttohappen.

�� Local authority advantages Assessthecostsandbenefits.

�� Attention to detail Includefinancialcostsandclarifywhetheryoursolutionislong-orshort-term.

�� Neutral tone Keepcalm!Focusonbeingaparentcarerexpertandleaveyourpersonalfrustrationsoutofit.Professionalsarefarmorelikelytoengagewithfactsandfiguresthananger.Ifyouaremeetingprofessionalsinperson,rehearsewhatyouaregoingtosaysothatyourresentmentsareoutofthewayintimefortherealthingandyoucanmaintainaneutraltone.

�� Follow-up Usealetter,emailoraphonecalltothanktheprofessionalfortheirtimeafterthemeetingandaskhowyourgroupcanhelpimplementyourproposal.Thiscouldbethestartofaconstructiverelationshipbetweenyourgroupandtherelevantprofessionals.

14. pages46–49.

15. http://bit.ly/fnQeW0

16. TheAuditCommission,MENCAP,NationalAutisticSociety,OfficeforNationalStatistics,Oneplace,OfstedandAmbitious about Autismwouldallbeabletoprovidestatistics.Usethesearchfunctionontheirwebsiteswithkeywordsfromyourcampaign.


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For Parents

Memorable campaigns run on PESTER POWER!a. People

b. Evidence (see section 3. How to compile evidence)

c. Strategy

d. Timing

e. Evaluation

f. Reason

a. PeopleYour most important resource is the peoplein your group. Here’s how to get the best out of them:

�� conductaskillsauditoftheparentcarersinyourgrouptoidentifystrengthssuchasadministrativeskills,events-organising,publicspeakingorpresenting

�� identifythoseparentcarerswhoarequalifiedtoworkwithchildren,suchasteachers,speechandlanguagetherapistsandchildminders.Theirprofessionalopinionscanaddclouttoyourcampaign

�� workwithotherparentcarersupportgroupsinyourareatostrengthenyourcampaign

�� keeppeoplemotivated!Supportthem,praisethemfortheireffortsandremindthemofthecampaign’sgoalandwhatitcouldachieve.

b. EvidenceAcampaign’spotentialtochangeservicesreliesonevidencewhichshowsthatALLchildrenwithautisminyourareawouldbenefit,notjustyourchild.


c. StrategyAskthefollowingwho,why,what,when,howquestions:�� whodoIwanttotarget?

�� whydoIwanttotargetthem?

�� whatmeansshouldIusetoreachthem?

�� whenwillmycampaignrunformaximumimpact?

�� howwillImeasurethecampaign’ssuccess? Checklist

These are just a few of some of the useful campaigning guides that have been compiled by a range of voluntary organisations.

AguidetogettinginvolvedfromEvery DisabledChildMatters(EDCM)17 ThecampaigntoolkitfromtheNational AutismSociety18

InfluencingforImpact,apublicationfrom theCouncilforDisabledChildren(CDC), aclearlywrittenguideonhowtoinfluence policyandpoliticians19

d. TimingThesuccessofyourcampaigncouldallhingeonitstiming.Forinstance,ifyouaretargetingMPsandthereisanelectionlooming,thiscouldeitherworkinyourfavourbybringingautismintothespotlight,oragainstyoubecauseit’sahectictimeforyourMPasheorsheattemptstogetre-elected.Youneedtomakeyourownjudgementcall.

Thebesttimedcampaignsarethosethattieintothebiggerpicture,anevent,suchasWorldAutismAwarenessDay,forinstance,oranewsstorythathighlightsaparticularaspectofautismandhowservicescanhelp.Referencingthebiggerpictureandtimingyourcampaignsothatitfitscanonlybenefityourcause.


19


Itwillkeepeveryoneontrackandprovideanagendaforcampaignmeetings.

You can also use the question and solution structure below to help you evaluate your campaign and tackle common campaigning issues.

Q: are you trying things that don’t seem to be working?S: changetack

Q: are some parent carers feeling overwhelmed by balancing the demands of caring with their responsibilities to the group?S: meetwiththemindividuallyaboutwhat isreasonableforthemtocommittothe groupconsideringtheirownparticular circumstances

Q: do you need support from a wider community of parent carers?S: consultothergroupsintheareasabout potentiallyjoiningforces

Q: are there any training or support needs that could improve your skills and campaigning techniques?S: consultotherparentgroupsnearbytoseeif youcanlearnfromthem

f. ReasonStayfocusedonthereasonforyourcampaign.Campaignswillfallbythewaysideiftheyareaimingto‘improveservicesforchildrenwithautism’,butaremorelikelytosucceediftheyarespecificintheirpurpose,forinstance,‘improvingknowledgeabouthowtosupportchildrenwithautismintheclassroom.

e. EvaluationYouneedtosetclearobjectivesthatyouwantyourcampaigntomeet,monitoryourprogresswhileyourcampaignisunderwayandthenundertakesomepost-campaignanalysis.Awrittencampaignplanwillenableyoutokeepontrackandissimpletoproduce.

Template campaign plan

CAMPAIGNSLOGAN:makeitshort,arrestingandeasilymemorable,e.g.SAVEAUTISMSERVICES.

CURRENTPROBLEM:whychangeisnecessary,e.g.cutsinlocalautismservicesareaffectingfamiliesinthelocalarea.

SUPPORTINGEVIDENCE:thiscouldbeasnapshotsurveyofthemembersofyourparentgroup,e.g.75%oflocalparentsandcarerswhousedtoaccesstheseservicesaregoingtosufferbecauseofthesecuts.

RESOURCES:surveysandresearch.

RECOMMENDATIONS:campaign‘asks’—e.g.thereneedstobeanurgentassessmentoflocalspendingreviews.

Plan of campaign

�� Meet with—familiesaffected,peoplerunningservices

�� How to get it on the agenda?Meetings,politicalpressure,media

�� Resources—money,people,contacts

�� Materials—briefing,pressrelease

�� Division of labour—whowilldowhatandwhen?

Spendingsometimewritingacampaignplanmightseematedioustaskwhenthereisacampaigntorun,butitisalong-terminvestment.


20

For Parents

Campaign StepsAcampaigncanbedividedintothreeequallyimportantsteps:persuade,influence,evaluate.

Foryourcampaigntobesuccessful,attentionandresourcesneedtobedirectedateachone.Thefollowingsectionshowshowyoucanidentifyandinfluencetherightprofessionalsandthenevaluateyourprogress.

Step One: Persuade…professionalstolistentoandacknowledgeyourconcerns.

Step Two: Influence….decision-makerstotakeactionandadoptyourproposedsolution.

Step Three: Evaluate…whatyouhaveachieved,whatworkedwell(andwhatdidnotforfuturecampaigning).

Top Tips: How to identify your target

1. visityourlocalauthoritywebsitetofindoutwhichcouncillorssitonChildren’sServicesandEducationcommittees

2. askthecommitteemanagertosendyouanorganisationalchartwhichdetailsthekeypeopledeliveringservicesforchildrenwithdisabilitiesinyourarea

3. localauthoritywebsitesshouldalsoprovideminutesfrompastmeetings.Theseshouldhelpyouworkoutwhomaybesympathetictoyourcause

Onceyou’veidentifiedwhoyouneedtoaddress,younextneedtoworkouthowyouaregoingtoinfluencethemabouttheimportanceofwhatyou’retryingtoachieve.

17. http://bit.ly/ifmTkz

18. http://bit.ly/fy6wmV

19. http://bit.ly/egDkHM


22

For Parents


[Nameandtitleofprofessional][LocalAuthority][ADDRESS]

[DATE]

DearSir/Madam,Wearewritingonbehalfofallthefamiliesin[Insertnameoflocalarea/borough]wherethereisachildorchildrenwithautism.

WeareextremelyupsettoheartheCouncil’sdecisiontocutservicesforfamilieswithautism,andresearchthatwehaveconductedhasshownthatthiswillaffect75%offamilieswherethereisachildwithautism.

What’smore,theoutstandingservicesprovidedbythecouncilwerenotexpensive.Lastyear’sannualreportputsthebudgetat£201,234.Thecostintermsoffamilybreakdownwhenfamiliescannotaccessservicesincludingshortbreaksandregulardrop-inscouldfarexceedthatamount[quotestatistics/evidencetoshowimpact]

Wehavelaunchedacampaign—SaveAutismServices—andintendtogetasmuchsupportaspossibleinordertohighlighttheimpactofyourdecisionandpersuadeyoutoreviewtheproposedspendingdecisions.

Wewouldappreciateameetingwithyouatyourearliestconveniencetodiscussthisandcanbecontactedattheaboveaddress.

Yourssincerely,

The undersigned[signandtitlepeoplefromtheparentgroup]

Copiedto:[sendingacopytolocalmediaandMPsshowsyourcommitmenttothecampaignanditsobjective]

[Yourlogo]

[Nameofyourgroup][Address][Nameofcontact]

[Email][Telephonenumbers]

1. LettersWrite letters to key people at your local authority to present the evidence you have gathered. This is a template of a letter to help you:


23

20. OrganisationforEconomicCo-operationandDevelopment(OECD),December2010.

21. http://bit.ly/9iJYs5

22. www.talkaboutautism.org.uk www.facebook.com/home.php?#!/talkaboutautism http://twitter.com/#!/talkaboutautism


2. OnlineAround 70 percent of UK homes have access to the internet via fixed or wireless broadband.20 This means that the internet is becoming increasingly influential in campaigning. There are many ways you can use online for your campaign:

�� E-mailnewslettersareagoodwaytokeeppeopleinformedwithyourcampaignandcanbedistributedspeedilyifyouhavecreatedalistthroughthe‘addressbook’onyouremailsoftware.

�� BloggingplatformssuchasBlogger,WordpressandPosterouscanbehugelyhelpfulforcampaigners.TakealookattheUKAutismNewsBlogasanexampleofaverystraightforwardblogdesign.21Settingupablogdoesn’tdemandanyspecialistknowledgeandcanbedoneinunderfiveminutes.It’sagoodwaytokeeppeopleuptodatewithwhat’shappeningwithyourcampaign,uploadingpicturesandvideoiseasy,andwhat’smoreit’stotallyfree.

�� SocialnetworkssuchasFacebookarefreetouseandprovideafamiliarenvironmentformany.Facebookcanalsobeusedtoflagupandinvitepeopletoevents,aswellasforpublishingphotosandcommentsaftereventshavetakenplace.Finally,don’tforgetaboutTwitter.Thismicro-blogisagoodwaytoattractnewsupportandsendoutreal-timenewsaboutyourcampaign.SocialnetworkingsitesareincreasinglybeingrecognisedasanimportanttooltosupportpotentiallyexcludedcommunitiesandarereportedbyEveryDisabledChildMatterstobeanimportantsourceofsupportforcarersofchildrenwithdisabilities.Suchsitesareexcellentwaystocommunicatewithotherparentcarers.Buildinguponlinecommunitiesenablesyoutoextendsupporttoparentswhomaybesociallyisolated.Ifyouwanttoseeanautism-specificexampleofanonlinecommunity,Ambitious about AutismprovidesTalkaboutAutism andhasFacebookandTwitterprofiles.22

3. MeetingAnyonelivinginthelocalareacanaskaquestionorpresentinformationtocouncilmeetingsattendedbyelectedCouncillors.It’susuallyadvisabletosubmityourquestionorevidencebeforethemeeting.Consultyourlocalauthoritywebsite.

4. EventsOrganisingeventscantakealotofworkbutcanbehugelybeneficialintermsofraisingawareness.The‘WalkInOurShoes’eventsencouragedpolicyanddecision-makerstospendtimewithfamilieswheretherewasachildorchildrenwithadisability.Theysawhowsimpletasksliketheschoolrunorasupermarkettripcouldbechallengingandasaresulttheybecomemuchmoreawareofhowtheycouldhelpimprovethelivesofthosefamilies.


24

For Parents

[Yourlogo]

[Nameofyourgroup][Address][Nameofcontact]

5. MediaApproach media across a range of communication channels including the local press, radio websites and TV stations. Draft a press release about your campaign and send it out, preferably with a few high quality pictures attached. Use the template below to guide you.

News Release: Parents campaign to save autism services

For immediate release: [DATE]

[NAMEOFAREA]autismgroup[NAMEOFGROUP]haslaunchedacampaigncalledSaveAutismServices.

TheaimofthecampaignistochallengetheCouncil’sdecisiontocutservicesforfamilieswithautism.Researchconductedbythegrouphasshownthatthesecutswillaffect75%offamilieswherethereisachildwithautism.

[NAMEOFPARENT],local[NAMEOFAREA]parent,said:“Theseservicesarealifeline,notonlyforchildrenwithautism,butalsoforfamilies.Iffamiliescannotaccessservicessuchasshortbreaks,drop-insandinformationprovision,theaffectonfamilylifecouldbedetrimental.WearedeterminedtopreventthesecutsandbelievethattheCouncilshouldreviewitsproposedspendingdecisionssothatthesefamiliesaren’taffected.”

Formoreinformationpleasegoto[NAMEOFGROUPWEBSITE].

Notes to Editors:

About [NAME OF GROUP] �� [Basicinformationaboutthegroup]

About autism�� Autismisalifelongneurologicalconditionwhichaffectscommunication,socialunderstandingandbehaviour.

�� Onein100schoolagechildrenhaveautismand27%ofthemhavebeenexcludedfromschool,themajoritymorethanonce(OfficeofNationalStatistics,2005).


25

23. pages65-69inthePACEParent’sHandbook.

Top Tips: Dealing with the media

�� Thinkintermsofphotoopportunities.Ifyoucanofferpicturesordosomethingtomakeyourcampaignstandout,ithasmorechanceofbeingincluded.

�� Trytotieinyourstorywitha‘biggerpicture’story,forinstancearecentnationalnewsitemorapieceofresearchtogivejournalistsandeditorsmorereasontoconsiderit.

�� Askfortheeducationornewsdesktogetthroughtothepeoplewhoarelikelytowriteupyourstory.Itisinadvisabletoaskfortheeditor,aseditorsspendverylittletimeworkingonactualstories.

�� Rehearseyourmessagesothatyouareconfidentaboutspeakingtolocaljournalists.

�� Avoidjargon.

�� Keeponmessage.Don’tbetemptedtostrayduetojournalistsaskingyouother,potentiallymoreleadingquestions.

�� Ifyouareincludingahumaninterestangle(andjournalistsareofteninterestedindoingjustthat)anditisyourownstory,workoutinadvancewhatyouwanttorevealandwhatyouwanttokeepprivate.

�� Staycalm.Anangryparentmakesagoodstorytoday,butcanpotentiallyjeopardisethesuccessofyourcampaigninthelong-term.

�� Ifyouhaveagoodexperiencewithajournalist,keepintouchwiththemaboutautismissues,evenwhenyouarenottryingto‘sellin’astory.Makeyourselfandothersinyourgroupavailableas‘goto’autismexperts.

�� Offertowritearticlesforthemedia.Thiscouldincludeautism-specificwebsites,parentingmagazinesortitlessuchasChildrenandYoungPeopleNoworCommunityCare.Alwayskeeptolength,fileontimeandcheckthehousestyleofthepublicationorwebsiteforwhichyou’rewriting.Keepitlight.Always

includealinktothewebsiteofyourparentinggroupandalogo/weblinkforanyspecificcampaigns,aswellasanyrelevantphotos.

�� Consider‘good’newsaswellas‘bad’news.Whileusingthemediamightspringtomindinthefirstinstancetohighlightacampaignsetuptorespondtoaweaknessinservice-provision,it’sjustasimportanttokeepjournalistsinformedofpositivestoriestoo.

�� Finally,anoteofcaution:howeverwellyouhaveworkedwithjournalistsinprovidingthemwithstories,theremaybebehind-the-scenesagendasandpoliticsataparticularpublicationofwhichyou’renotaware.Soalwaysthink:whatistheworstcasescenario?Howcouldourmessagebemisinterpretedandusedagainstus?23


26

For Parents

6. How to influence decision-making in person

“Parentsmaytalkoffeelingintimidatedbyprofessionals,butitmayhelpthemtounderstandthatprofessionalsareoftenevenmorescaredofhavingtofaceawkwardquestions,andthattheywillappearuninvolved,actevasivelyorretreatintobureaucraticworkingbecausetheyarefrightened.”Local authority professional

Meetings are productive when parents and professionals work in partnership and respect each other as experts. In this scenario, both parties share the vision of services that effectively meet the needs of the widest population of children with additional needs.

“Thebiggesttake-outforme[fromthePSP]washavingface-to-facemeetings,physicallymeetingparentsinbothformalandinformalsettings.Youpickuponsignalsanddetailswhenyoumeetface-to-facethatyoudon’tviaemailsorphonecallsoreveninformalmeetingenvironmentsbecausetheytendtobeclosedasopposedtoopen-endedconversations.Parentscouldthenseethatwesharedthesameinterests:tryingtoprovidethebestpossibleserviceswithinparticularconstraints.”Educational Psychologist

Particularlyduetoourover-relianceonemails,theincentiveforface-to-facemeetingshasbeensomewhatlost,soit’shardertoschedulethemin.Yetit’simportanttomeetinpersontobuildlong-term,constructiverelationshipswithprofessionalsandpersuadethemtohearyourview.Sooncethereisameetinginthediary,ensureyougetthemostoutofit!

Tips for productive meetings�� Representtheviewsofyourgroup,notjustyourownpersonalviews.Yourargumentswillcarrymoreweightiftheyrepresentabroadspectrumofparents.�� Ensurethat,ifit’saformalmeeting,minutesaretakenandcirculatedasadrafttoallattendees;ifit’smoreinformal,writetotheprofessionalswhoinvitedyou,thankingthemfortheirtimeandhighlightinganyactionstheyintendedtotakeduringthemeeting.

�� Doyourhomework!Thisentailsconsultingpreviousminutesandbeingfullyawareofwhat’sontheagendainadvance,aswellasconsideringpracticalissuessuchasthelocationandhowyou’regoingtogetthere.�� Ifyouarebeingpaidforyourtimeorreimbursedforexpenses,submityourclaimpromptly.�� Avoidgoingoffonatangent;sticktothepointsontheagenda.�� Ifyouareunabletoattendinpersonforanyreason,askifyoucancontributeviaemail,phoneorSkype.

Parent Group meetingsParentgroupmeetingsneedtobeminuted,withdraftsofthoseminutesbeingdistributedassoonaspossibleafterthemeetinghastakenplacesothatnomomentumislost.

Andremember:allpeopleatanymeetingareentitledtohavetheirsay,includinglocalauthorityandparentrepresentatives.Ifyouareinvitingalocalauthorityrepresentative,makethemfeelwelcome,askthemtoattendthewholemeetinganduseitasachancetofurtherrelationswiththelocalauthoritytowardspartnershipworking.Imaginehowmuchyouwouldappreciateawarmwelcomeifyouwereaparentrepresentativeatalocalauthoritymeeting.

How to lobby national governmentWhilelocalauthoritiesdeliverlocalservices,nationalgovernmentissolelyresponsibleforpassinglawsandgeneratingpoliciesonthequalityandreachofthoseservices.Andwhilesomemoneyforservicesisfundedthroughcounciltaxes,localauthoritybudgetsarestilllargelycontrolledbycentralgovernment.

Top Tip

EncouragelocalauthoritiesandPCTstosignuptoandimplementrelevantnationalcampaigns.Atthesametimecampaignlocallytoensurethatproposedchangesresultingfromsuccessfulnationalcampaignsarereflectedlocally.


27

�� Mencap’sme2groupinDudleyhelpedtosetobjectives,design,andevaluationfortheDon’tStickIt,StopIt!Anti-bullyingcampaign.�� Whizz-KidzarrangedfortheiryoungboardmeetingstobeheldattheDepartmentforEducation,enablingpolicyanddecision-makerstomeetdisabledchildrenandyoungpeopleinperson.

Top Tips: National Campaigning

�� Understandthedifferentpoliticalpartiesandwhattheysayaboutservicesforchildrenwithdisabilities.�� Findouttheprospectivecandidatesforeachpoliticalpartyinlocalcouncilandgeneralelections.Sendthememailsandinvitethemtoyourgroup.�� AttendlocalsurgeriesheldbyelectedMPsandLocalCouncillors.

Checklist

Thefollowingorganisationsmayhelpyoutokeepuptodatewithanylaworpolicychanges—andthedifferencesbetweenpoliticalpartiesondisability.

�� Ambitious about Autism27

�� AutismEducationTrust(AET)28

�� EveryDisabledChildMatters(EDCM)29�� TheNationalAutisticSociety(NAS)30

�� AllPartyParliamentaryAutismGroup31

Afterageneralelection,newgovernmentswanttoimplementtheirmanifestocommitments.Thiscouldmeanchangesinlegislationaffectingchildrenandfamilies,fundingcuts,orevenchangestothestructureoflocalgovernment.

The threat of cuts…It’sworthnotingthatonly£2.7billionisspentonservicesforchildrenwithautism,whileservicesforadultstotal£25billion.24Andascutsremainatopnewsstory,theneedsofchildrenwithautismneedtobechampionedmoreloudlythanever.

ParentparticipationiscrucialastheUKisfacingasignificantreductioninpublicexpenditure.AreportpublishedbythethinktankandconsultancyNewPhilanthropyCapital(NPC)on15December2010showedhowmuchthecurrentcutsinpublicfundingcouldhitfamilieswheretherearechildrenwithautismwhousetheservicesofparticularcharities.Accordingto40autismcharities,37%expecttocutfrontlineservicesin2011,18%expecttoloseathirdoftheirincomeandfourexpecttogobankrupt.25It’svitaltoensurethatyourvoiceisheard.

The parent view on cutsAnne Myatt, Project Co-Ordinator for RAGS in Havering, says:

“It’sastrangelimbotimearoundfunding.Butwewon’tfoldifwearen’tfundedanymore.Wewouldcarryonbecauseit’stooimportanttostop.Itisn’tourjob,it’sourlife.That’sthemessagewepromotetoourparentstoshowthevalueofbeinginvolved.Wesendletterstolocalauthorities,particularlywhenweknowthatbudgetsaren’toftenring-fenced.”

Whilecampaigningonanationallevelmayseemlikeatallorder,itcanachievesomeimpressiveresults,andEveryDisabledChildMatters(EDCM)advocatescampaigningatnationalleveltoimprovethelivesofchildrenwithdisabilities.

TwopertinentexamplesthatitoffersinInfluencingforImpact:aguidetoinfluencingpolicyandpoliticiansfordisabledchildren’sorganisations26are:


24. Daly,S.andClements,K.(November2009)ASnapshotofChildren’sAutismServicesintheUK,Ambitious about Autismwww.ambitiousaboutautism.org.uk

25. Salman,S.(15December2010),IsProgressonAutismUnravelling?,TheGuardian,http://bit.ly/gmHcd8andHedley,S.(15December2010),FundingCutsWillAffectAutismCharitieshttp://bit.ly/ez1TOB

26. http://bit.ly/egDkHM

27. www.talkaboutautism.org.uk

28. www.autismeducationtrust.org.uk

29. www.edcm.org.uk

30. www.nas.org.uk

31. www.appga.org.uk

“ Parents have told us that good, honest and open communication is one of the important components of building confidence and good relationships. Face-to-face communication with parents, treating them as equal partners with expertise in their children’s needs is crucial to establishing and sustaining confidence. Where things go wrong, the root causes can often be traced to poor communication between school, local authority and parent.” The Lamb Inquiry (2009)


03.For Professionals

The ART of positive relationship-building

ThereisanARTtoworkingwithparentsinwhichprofessionalpeopleneedtobecomeskilledifpartnershipworkingistobesuccessful.Itisworththeinvestment:buildingstrongrelationshipswithparentscandefusepotentiallystressfulsituations.

1. AcknowledgeParentsaretheexpertsontheirchildren.Acknowledgingthisexpertiseisthemostimportantfirststepyoucantaketowardspartnershipworking.

2. RespectIfyourespectparentsandtheirpointofview,theywillbemoreinclinedtorespectyours.Valuetheinputthatparentscanprovide.

3. TrustRelationshipswon’tworkifthereisnomutualtrustbetweenthetwoparties.Thistakestimebutitiscrucialifcollaborativeworkingistobeeffective.

PSP: Take-Outs for ProfessionalsFollowingthePSPproject,Ambitious about Autismnotedtheemergenceofapositiveandproductivepartnershipbetweenparticipatingparentsgroupsandlocalauthorities.

Staffordshire Parent Group

In Staffordshire, the Corporate Director of Lifelong Learning was enormously supportive and took positive steps towards effecting change in the areas highlighted by the Staffordshire Parent Group’s campaign. Informal exclusion has significantly reduced since, at the parents’ request, the Director wrote an open letter to parents asking them to contact him personally with instances of informal exclusion.

Following its Constructive Campaigning Parent Support Project (known as PSP), Ambitious about Autism commissioned the Office for Public Management (OPM) to conduct an evaluation of the three-year initiative to show how effective it had been in meeting its goals.32

Followingthisproject,theparentgroupsinvolvedwiththePSParekeentoinspireotherparentsacrosstheUKtomaintaintheircampaigningmomentumandnotgiveupwhenthegoinggetstough!

Itnotedthat,formanyofthelocalparentcampaigninggroupssupportedbytheproject,aconstructivepartnershiphadoftendeveloped.

AsLindaDickinson,leadparentinRedcarandCleveland,oneoftheparticipatingparentgroups,reflects:

“Ifeelthegreatestbenefitinourareahasbeenthefactthatparentsworkinpartnershipwithprofessionals.”

Thissectionisallabouthowyou,asaprofessional,cantakestepstoworkinamorecollaborativewaywithparentsandaimtobuildapartnershipthatincorporateseveryone’sexpertise.

What is your role?Asaprofessional,youhavedirectcontactwithchildrenwithautismandtheirfamiliesandarefamiliarwiththekindsofchallengestheyconfrontonaneverydaybasis.Youarealsoonthefrontlineofservicedeliveryandmeetingtheneedsofthelocalcommunity.

Youwillalsobeonlytooawarethatwhenyoumeetparents,theirfamilylifecanbeextremelystressfulduetothedemandsofcaringforachildorchildrenwithautism.Ifyouusuallyencounterparentsinmeetingswhentheyarecomplainingthattheirchild’sneedsarenotbeingmet,thenyourenthusiasmforworkingwithparentsmaybeunderstandablylimited.Encounterslikethisfuelamutualsuspicionandlackoftrust.Theoutcomeisthatitisdifficultforthebestdecisionstobemadeundersuchcircumstances.

29

32. Phillips,J.(2009)OpeningDoorsforChange:EvaluationoftheTreeHouseConstructiveCampaigningParentSupportProject,Ambitious about Autismwww.ambitiousaboutautism.org.uk


30

For Professionals

One local councillor involved in the PSP made the point that:

“Constructiverelationshipsarebuiltontrust,andthattakestime.Atfirstwedidn’tunderstandeachother’sside.Butwewantedtolearn.Nowwehaveparentrepresentativesonourcommittees.Theysometimesshareemotionalstoriesaboutlivingwithachildwithautism.Andtheirgreatestcontributionistheirdirectexperience.Buttheyarealsoobjectiveandrealisticintheircontributions.”

Yetotherfindingsfromthereportsuggestedthatengaginglocalauthorityofficerswasparticularlychallenging.Somegroupmembersevenadmittedthattheyhad‘givenuptryingtogetthelocalauthorityonboard’aftermeetingnothingbutresistance.

Following the PSP project, Ambitious about Autism identified the following strategies for local authorities to implement to help promote partnership working:

TRANSPARENT:beopenwithparents.

DATA-LED:provideinformationonhowthelocalauthorityplansprovisionforautismeducation.Muchofthisinformationcannowbeeasilysharedviaweb-baseddocuments.

PARTNERSHIP-ORIENTED:acknowledgeparentsaspartnersintheplanningandreviewofservicesforchildrenwithautism.

COLLABORATIVE:workwithparentstodeveloptrainingprogrammesforschools,parentsandlocalauthorities,whichincludeparentsastrainers.

INCLUSIVE:includeparentrepresentativesonstrategicworkinggroups,withclearmechanismsfordecisionstofeedintothedeliveryplanningprocess.

DEMONSTRATIVE:visiblydemonstrateyoursupportforautismawarenessandeventsbyusingyournetworkstoadvertiseeventsandencourageattendance.

COMMUNICATIVE:appointanofficerwithspecificresponsibilityforfurtheringparentparticipationtoensuretwowaycommunication.

HELPFUL:giveparentsclearguidanceonthemostappropriatechannelsthroughwhichtomaintaincontactonissuesrelatingtotheeducationofchildrenwithautism.

SUPPORTIVE:supportparentsbyenablingthemtocommunicateeffectivelywitheducationalsettingsinyourarea.Forexample,bydistributingreportsorsurveysbyemailontheirbehalf.

EVIDENCE-BASED:workalongsideparentstocollectdataandevidencetoidentifyneedandinformfutureplanningofservicesforchildrenwithautism.

POSITIVE:ensureallparentscanengagesuccessfullyandproductively,includingadultswithautism,seethepositiveinputthatALLindividualscanbring.

“It was difficult to find capacity to ensure local authority ‘buy-in’ to the process from the outset, and a lack of support from key representatives presented significant barriers to change.” PSP Manager


31

The PSP and Ambitious about Autism Parent Participation Project (PPP) were involved with two week-long events called Walk In Our Shoes. Their goal was to increase awareness and understanding of the impact of disabilities — including autism — on families.

Parentsandcarersinallthelocalauthorityareasinvolvedwiththeprojectsinvitedlocaldecision-makerstospendsometimewiththeirfamilies,providinganopportunityfordecision-makerstoexperiencetherealitiesofday-to-daylifeforchildrenwithadisability.

Activitiesincludedtheschoolrun,havingbreakfasttogether,goingtothehairdressersandtakingashorttriponpublictransport.

Morethan30decisionmakerstookpartacrossthecountry,includingMinisters,MPs,Councillors,SeniorLocalAuthorityrepresentativesandPrimaryCareTrust(PCT)representatives.

Feedbackfromparentshasbeenverypositive,withthefollowingcommentfromoneparent—‘Thewholeactivitywasterrificandwillremainwithmeforalongtime!’

Outcomes:�� notonlydidparentsvaluetheuniqueexperience,butvariouspositiverelationshipshavebeenformed.Onelocalauthority/PCTrepresentativeinTelford&Wrekin,forinstance,pledgedtofollowuponfindingadditionalsupportforaparticularfamily,whileinHaringey,parentswereinvitedtoattendaChildren’sTrustBoardMeeting

�� parentsandcarersarelookingforwardtoacontinuedpositivedialoguebetweenfamiliesanddecision-makerstoensurethattherightimprovementsaremadethroughoutthesystemtoreallyimprovethelivesofchildrenandyoungpeoplewithdisabilitiesandtheirfamilies

�� bothfamiliesanddecision-makersclaimedtowantmoreopportunitiestodeveloprelationshipsandidentifiedarangeofwaysinwhichthiscouldbesupportedbyAmbitious about AutismincludingorganisingmoreeventslikeWalkInOurShoesandgeneratingmoremediaandonlinesupport

�� therewassignificantlocalmediainterestinWalkInOurShoeswithcoverageinmanylocalpapersincludingTheShieldsGazetteandHaringeyIndependent.

Why was Walk In Our Shoes successful?�� Theeventsprovidedanopportunityfordecision-makerstomeetparentsandgainavaluableinsightintotheirlives.

�� Parentsanddecision-makerscoulddiscussonaone-to-onebasistheissuesthattheyface,andstarttodevelopapositiverelationship.

�� Eventsliketheseassistlong-termjointparentandprofessionalworking.

Walk In Our Shoes

Photo overleaf:DavidLammyMPvisitingtheUddinfamilyaspartofWalkInOurShoes


32

“I thought that this was an excellent participation event, should be more of them! The thing I took away from the event is while it’s right and proper to deliver the best services for the child or children, it’s extremely important not to forget the rest of the family.” Councillor South Tyneside

“This experience improved my understanding of decision makers. They are real people with families and difficulties just like us. I am sure if we all learn to work together and listen to each other; we could do so much to ‘make things good.” Parent Adur District Council

Walk In Our Shoes


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“I am immensely grateful to the family for helping me to understand the difficulties they face. Getting kids to school in the morning can be difficult enough, without the added burden of disability and very real practical problems this creates.” Lynne Featherstone MP Hornsey and Wood Green

“For many parents the interest local decision-makers expressed in participating in Walk In Our Shoes has generated significant momentum for their local campaign.” PSP Manager


For Professionals

How to work with Parents

“Asalocalauthorityofficer,Iattended[aparentgroupmeeting]whenIwasinvited—atasettimeforpartofthemeeting—questioned,andthenleft.Ididnotfeelthatitwasapartnershipatall.Ithinksomuchcouldhavebeenachievediflocalauthorityofficershadbeenmadetofeelmorewelcomeandpartofthings.”Local Authority Representative

When things don’t seem to be going right for their children, caricaturing local authority workers as heartless or uncaring is a trap into which frustrated parents of children with autism can easily fall.

YetasoneoftheparticipatingparentsinWalkInOurShoespointsout,thateventhelpedtoremindherthatdecision-makersarehumanbeingstoo.Theaboveexperiencefromthelocalauthorityrepresentativeshowsthatwhendecision-makersareinvolvedinonlyahalf-heartedway,partnershipworkingisgoingtobeproblematic.

If,asalocalauthorityworker,you’reinvitedtoattendaparentgroupmeeting,ensurethatyou’rebeingaskedtotheWHOLEevent,notmakingaguestappearanceandthenbecomingsurplustorequirements.Thatwayyou’reabletoinformparentsaboutwhat’sreallygoingonbehindthescenesasopposedtothemguessinganapproximateversionofevents.

Youcanupdatethem,clarifypointsandensurethattheyhavetheirfactsstraight.It’sineverybody’sintereststhatyourinvolvementisaskeytothegroupastheotherpeopleattendingthemeeting.

Therealvalueofcollaboratingwithparentsisthattheycanofferatrueinsightintowhattheactual,asopposedtotheperceived,needisforautismservicesinthecommunity.

There are several benefits to working with parents because parent involvement enables local services providers to:

�� drawonrealexperiencesofcaringforchildrenwithautismandthechallengesfacedbyfamiliesineverydaylife.AsWalkInOurShoesshowed,justasimpletriptothesupermarketwithchildrenwhoaredisabledcanfeeloverwhelming

�� identifyrealneedsastheyemerge:differentlocalauthoritiesmayrequiredifferentkindsofprovision.Whilelearningcanbetranslatedbetweenthem,realneedsarespecifictoalocalcommunity,dependingonwhatthatcommunityneeds.Onlybykeepingincontactwithparentswillthoseneedsbecomeapparent

�� identifyappropriateparentsasasourceofsupport,knowledgeandexpertiseforfamilieswithanewlydiagnosedchild

�� boosttheconfidenceofparentstoempowerthemaspartnersintheprovisionofservicesasopposedtopassiveconsumersofthoseservices.

As a professional, approaching parent groups can be daunting, but the golden rule of collaboration is to be proactive! Don’t wait for parent groups to come to you... go to them. Here are some ways in which you can get to know them better:

�� identifytheparentgroupsinyourareaandmakeyourselfknowntothem

�� invitethemtomeetingsandbriefingssothattheyfeelinvolvedandseethatyouareseriousaboutworkinginpartnership

�� visitauthoritiesclosebywheretherearegoodrelationshipsbetweenlocalserviceprovidersandautismgroups.Notewhattheydowell.Chattobothpartiesaboutthebenefitsofworkingcollaborativelyandconsiderhowyoucouldimplementsimilarwaysofworkinginyourarea


�� supportfundraisingeventsthatparentgroupshold(forinstance,summerfairs,eventsaroundChristmasandraffles).Itpaystobearegularattendeeatsuchevents

�� makeclearyourintentiontoimprovetheprovisionofautismservicesinthearea...withtheirhelp.Askifitmightbepossibletoattendsomeoftheirmeetingssothatyoucanputacrosstheviewofthelocalauthorityandkeepthemuptospeedwithwhatisgoingon.

�� helpthemoutwithevidenceifthereislocalauthoritydatathatcouldbackupanargumentthattheyaremaking.Athirdpartycangivesuchevidencemoreclout.

35

“FOCAS are very pleased that [the autism strategy] is now being integrated into the Council’s main strategic document for all children and young people in Redcar & Cleveland.” PSP Parent’s and Carers’ Seminar Report, 2009

FOCAS, Redcar & Cleveland

A textbook example of how well local authorities can support parent groups came from Families of Children on the Autistic Spectrum (FOCAS) in Redcar & Cleveland.

Thelocalauthorityhasofferedgreatsupporttoparentsinthearea,andthereisapositiveandconstructiverelationshipbetweenlocalauthorityprofessionalsandFOCAS.

FOCAScreatedtwoquestionnaires,oneforparents,theotherforschools.Theresultswereusedtoinformalargemulti-agencyconferenceorganisedbythelocalauthority.Thelocalauthoritygavetheresearchtheirfullbackingandwasinstrumentalinensuringthatschoolssupportedtheprojectbyreturningthesurvey.

“IwouldbeverygratefulifyoucouldfindthetimetocompletearesponseasweareabouttoreviewourRedcar&ClevelandpolicyonmakingourselvesanAutisticSpectrumDisorderfriendlylocalauthority.Resultsofthissurveycouldprovideavaluablesourceofinformationonwhereweneedtogonextinourneworrefreshedactionplan.”Excerpt from email from Principal Educational Psychologist in support of the survey

TherelationshiphasresultedinthelaunchofanewChildrenandYoungPeoplePlanwhichincorporatesanautismstrategy.


36

For Professionals

How to build constructive relationships with parent carersA culture shift may be required in some local authorities to accept the point of view that relationships with parents need not be ‘us versus them’.

Forsome,anewwayofworkingwillchallengeanestablishedculture.Staffmayneedtoadjusthowtheyperceiveparents,fromseeingthemas‘usersofservices’toequals.

Ifyoufindyouarehavingdifficultiesyourselfwiththiscultureshift,orifmembersofyourteamareresistanttoembracingpartnershipworking,sharethesebenefitsofamorecollaborativeapproachwiththemtopersuadethemtochangetheirmindset:

COST:Thecostofconflictishigh,intermsoftime,energyandstaffmorale.

DUTY:Therolethatparentsplayintermsofviewpointsarenowrecognisedasanessentialpart,ifnotadutyforlocalauthoritiestoimproveservicesandnotanoptionalextra.

EFFECTIVENESS:Inputfromparentswholivewithchildrenwhohaveautismisavaluableresourcethatlocalauthoritiescanusetomonitor,improveanddevelopnewserviceswhich,inturn,willmakethoseservicesfarmoreeffective.

SUPPORT:Parentcarerscanhelpwithstaffdevelopmentworkshopsandcanalsohelpprovideemotionalandpracticalsupportforparents,particularlyoneswhohaveanewlydiagnosedchild.

SERVICE-ALLOCATION:localauthoritiesriskbeingcriticisedforgivingintothoseparentswhocomplaintheloudest.Workinginpartnershipwithparentsenablesprofessionalstoallocateintermsofneed,notvolume.

Top Tips: Create a parent-carer partnership policy

Aparentcarerpartnershippolicyprovidesguidelinesforyourteam.

This kind of policy can be useful in terms of spelling out the partnership and what it hopes to achieve. It should be proactively incorporated into professional life when:

�� anewteammemberarrivesandisgoingthroughtheinductionprocess

�� forstaffwhoaresupervisingteammembers

�� toidentifytheneedforstafftrainingtohelpthemworkconstructivelywithparents

“Professionals now acknowledge that parents are the experts on their children and professionals are the experts in their field.” Linda Dickinson Lead Parent, Redcar and Cleveland


37

Tips on how to improve communication and relations with parents and parent groups�� Welcomenewmembers/produceawelcomepackwithmaterialsforthemtoread,suchasminutesfrompreviousmeetingsandacopyoftheparentcarerpartnershippolicy.

�� Avoidjargonandhaveacopyofcommonlyusedtermsandacronymsinthewelcomepacksotheycanfollowtheconversation.

�� Timemeetingsforsensibletimesoftheday.Askwhenarethebesttimes/timestobeavoided.

�� Bemindfulofmoney.Avoidholdingameetinginaninaccessibleplace.Someparentgroupshavesuccessfullyaskedconveniently-locatedhotelsiftheycanholdmeetingsinavailablerooms.Someauthoritiesoffertocoverthecostoftravelforparents.

�� Implementabuddyscheme.Newmemberscanoftenfeelintimidated,sobypartneringthemwitheitheraparentorprofessionalwhoismoreestablishedinthegroup,theyhaveafirstportofcallforanyquestionsorclarifications.

�� Ensureyouareinvolvingawiderangeofparents,fromdifferentculturalandreligiousgroups,aswellasfathersofchildrenwithautism,singleparentsandparentswhomightbedisabledthemselves.

�� appointanexperiencedchairtoensurethatmeetingsrunsmoothlyandtotime.

Finally, remember:Whenthepeoplewhoprovideservicesworkalongsidethepeoplewhousethem,thoseserviceswillbemoreeffectivebecause:

�� theyaremorelikelytomeettheneedsofacommunity

�� theywilltargetserviceswheretheyaremostneeded,and

�� theywillbemorecosteffective.

Talkaboutwin-win!

“At higher levels above my tier of management there’s a concern to respond to parents as a political force. At my level, it’s much better to work constructively with parents rather than fire across all trenches on the western front.” Principal Educational Psychologist


03.Glossary of TermsProfessionals‘Professionals’referstoallpractitionersthatworkdirectlywithchildrenincludingteachers,socialworkers,speechandlanguagetherapists.Additionally,thetermencompassesemployeeswhomanageandcommissionlocalservicesforchildrenwithadditionalneeds,suchasdirectorsandheadsofservice.

Primary Care Trust (PCT)APrimaryCareTrustisapartoftheNationalHealthService.PCTsareresponsibleforcommissioninghealthcareservices,suchasprimarycare(generalmedicalservices,dentistry,etc.)mentalhealthservicesandhospitalcare,tomeettheneedsofthelocalcommunity.

Children’s TrustsUnderpinnedbytheChildrenAct2004dutytocooperate,theemergingChildren’sTrustsseektobringtogetherallservicesforchildrenandyoungpeopleineachareaunderoneroof.Theaimisthatbycoordinatingservices‘aroundthechild’outcomesforallchildrenandyoungpeoplewillbeimproved.

Local AuthorityLocalAuthorities—orLocalCouncils—arefundedthroughcounciltaxesandgrantsfromcentralgovernment.Theyareresponsibleforprovidinglocalservices,suchassocialcareandleisurefacilities,totheirdesignatedcommunities.www.direct.gov.uk

Local CouncillorsCouncillorsarelocalpoliticianselectedbytheirlocalcommunitytorepresenttheirviewswithinthelocalauthorityatcouncilmeetings.

Decision-makersDecision-makersrefertoindividualswhohavebeenelected—suchasMPsandLocalCouncillors—oremployed—suchasheadsofserviceordepartmentalmanagers.Theyhavetheresponsibilitytomakedecisionsaboutourservices,suchasadmissionpoliciesforlocalschoolsortheclosingofalocalhospital.


Useful Organisations

Ambitious about AutismAmbitious about Autismundertakespolicyandparliamentaryworkandresearchtoensureautismisanationalpriority,supportsparentstocampaignlocallyandofferstrainingandconsultancyonautismeducation.www.Ambitious about Autism.org.uk

Audit Commission TheAuditCommissionisanindependentwatchdogmonitoringeffectivenessinlocalpublicservicestodeliverbetteroutcomesforeveryone.Itworksacrosslocalgovernment,health,housing,communitysafetyandfireandrescueservices.www.audit-commission.gov.uk

Carers UK CarersUKrepresentscarersfromacrosstheUK.Itworkslocallyandnationallytocampaigntogetthevitalcontributioncarersmaketosocietyrecognised,emotionally,practicallyandfinancially.www.carersuk.org

Circuit Riders MobileICTworkerswhoprovideICTdevelopmentandsupportworktosmallvoluntarysectororganisations.www.lasa.org.uk/ict/lasa-circuit-riders/

Contact a Family (CaF) ContactaFamilyisanationalcharityprovidingadvice,informationandsupporttotheparentsofdisabledchildren.Ithasnational,regionalandlocalofficesofferingone-to-onesupport,publications,andafreehelpline.www.cafamily.org.uk

The Council for Disabled Children (CDC) CDCistheumbrellabodyforthedisabledchildren’ssectorinEngland,withlinkstootherUKnations.CDCworkstoensurethatthevoicesofchildrenandyoungpeoplewithdisabilities,andtheirfamilies,areheard.CDCalsohostsEveryDisabledChildMatters.www.ncb.org.uk/cdc/home.aspx

DirectGov Aguidetohelpyoufindyourlocalauthorityandbrowsethroughthe‘AtoZ’ofservices,includingalinktosupportgroupsforchildren,youngpeopleandfamilies.www.direct.gov.uk

Every Disabled Child Matters (EDCM) EveryDisabledChildMattersisaconsortiumcampaignrunbyfouroftheleadingorganisationsworkingwithdisabledchildrenandtheirfamilies:ContactaFamily,theCouncilforDisabledChildren,MencapandtheSpecialEducationalConsortium.EveryDisabledChildMatterscampaignstoraisetheprofileofchildrenwithdisabilitieswithpoliticiansinlocalandnationalgovernment.www.ncb.org.uk/edcm/home.aspx

Include Me TOO IncludeMeTOOworkslocally,regionallyandnationallytosupportallchildrenwithdisabilitiestoreachtheirpotentialandtobevaluedbysociety.Itchampionstherightsofchildrenwithdisabilitiesfromdiverseethnicandculturalgroups,providingtrainingandresourcesforchildren,parentcarersandprofessionals.www.includemetoo.org.uk

Local Government Association (LGA) LocalGovernmentAssociationisamembershiporganisation,actingasthevoiceofthelocalgovernmentsector.Itprovidessupporttolocalcouncillorstostrengthenlocaldemocracy.www.lga.gov.uk

Mencap Mencapnotonlyprovidesspecialistservicestoenablepeoplewithalearningdisabilitytodeveloptheskillstheyneedtoleadfulfillinglives,italsoprovidesawealthofresourcesanddataaboutdisabilitywhichareusefulforprofessionalsandparentcarers.www.mencap.org.uk


03.

41

The National Autistic Society (NAS) TheNationalAutisticSocietychampionstherightsandinterestsofallpeoplewithautismandprovideshelp,supportandservicestopeoplewithautismandtheirfamilies.TheNASprovideslocalsupportgroupsforparentcarersandforpeoplewithautism,aswellastrainingforparentcarersandprofessionals.TheNASalsoprovidesanonlinecommunity.www.nas.org.uk

NAVCA NAVCAisthenationalvoiceoflocalthirdsectorinfrastructureinEngland.Itprovidesspecialistadvice,policyinformationandtrainingtosupportthevoluntaryandcommunitysector.www.navca.org.uk

National Council for Voluntary Organisations (NCVO) NCVOsupportsvoluntaryorganisationsinEngland,providinginformation,adviceandsupporttopeopleworkinginorwiththevoluntarysector.Itprovideshelpandsupporttoestablishedparentsupportgroupsandtoparentcarerswhowanttosetupanewgroup.Youcanalsousetheirwebsitetoidentifylocalgroupssupportingchildrenwithautismandtheirfamiliesinyourarea.www.ncvo-vol.org.uk

National Parent Partnership Network NPPNsupportstheworkoflocalParentPartnershipServices(PPS).Theseservicesofferinformationadviceandsupporttoparentsandcarersofchildrenandyoungpeoplewithspecialeducationalneeds(SEN).www.parentpartnership.org.uk

Office for National Statistics OfficeforNationalStatistics(ONS)providesdataaboutlocalandnationaldemographyaswellasstatisticsfromgovernmentdepartments.www.statistics.gov.uk

The Office for Standards in Education, Children’s Services and Skills (Ofsted) Ofstedisagovernmentbodyresponsiblefortheinspectionandregulationofservicesforchildren“toachieveexcellenceinthecareofchildrenandyoungpeople,andineducationandskillsforlearnersofallages”.Itswebsitehasusefulresearchandpublicationsonstandardsforparentgroupsandprofessionals.www.ofsted.org.uk

Talk about Autism TalkaboutAutismisawarm,welcomingandsupportiveonlinecommunityforparentsandcarersofchildrenwithautism,forpeoplewhohaveautismandforprofessionals.ItisprovidedbyAmbitious about Autism.www.talkaboutautism.org.uk


References and Publications

References and PublicationsAchieving Better Outcomes. Commissioning in Children’s Services (2009)CommissioningSupportProgramme.www.commissioningsupport.org.uk

The Framework for School Inspection (January2011)Ofstedhttp://bit.ly/kRJCm Aiming High for Disabled Children: Better Support for Families Supporter Briefing (April2009)EveryDisabledChildMattershttp://bit.ly/htSscA

21st Century Schools: A World-Class Education for Every Child Children’s Services Network (December2008)LocalGovernmentInformationUnit,http://bit.ly/ex11rt

Are we there yet? Improving governance and resource management in children’s trusts (October2008)http://bit.ly/eG0Nbz

Campaigning GuidesOpening Doors for Change: Evaluation of the Ambitious about Autism Constructive Campaigning Parent Support Project Phillips,J.(July2009)Ambitious about Autismwww.Ambitious about Autism.org.uk

Guide to Changing Local Service CarersUK(November2008)www.carersuk.org

Making Disabled Children Matter Locally EveryDisabledChildMatters(April2009)www.edcm.org.uk

Campaigning with the National Autistic Society Corbett,C.,Tarrant,A.(2006)NationalAutisticSocietywww.nas.org.uk

Influencing for Impact: A guide to influencing policy and politicians for disabled children’s organisations CouncilforDisabledChildren.(March2010)http://bit.ly/egDkHM

Parent Participation and Partnership-workingContact a Family/Council for Disabled Children Parent Participation Improving Services for Disabled Children. Professional’sGuide.(September2005)www.cafamily.org.uk/publications.html OR www.ncb.org.uk/cdc/home.aspx

The Duty to Involve: Making it Work Community Development Foundation Archer,T.,Pitchford,M.,Ramsden,S.(2009)www.cdf.org.uk

A Snapshot of Children’s Autism Services in the UK Daly,S.,Clements,K,(November2009)Ambitious about Autismwww.Ambitious about Autism.org.uk

Supporting People with Autism Through Adulthood NationalAuditOffice(June2009)http://bit.ly/gNQoIg

Information for Parents. Autistic Spectrum Disorders (ASD’s) and Related Conditions EarlySupport(2006).ReferenceES12http://bit.ly/dXhFrE Involving People with Autism: a guide for public authorities NationalAutisticSociety(2010)http://bit.ly/huKMux

Disability and ExclusionTaking a Closer Look: Child Poverty and Disability (Northern Ireland Briefing) SavetheChildren/TheFamilyFund(November2009)http://bit.ly/fmVHAb


03.

43

Championing the Rights of Disabled Children and Young People. Handbook Supporting the National Charter of Rights for Disabled Children and Young People IncludeMeTOO(2008)2ndEditionwww.includemetoo.org.uk

Think Family: Improving the Life Chances of Families at Risk SocialExclusionTaskForce,CabinetOffice(January2008)www.cabinet-office.gov.uk


Acknowledgements

Ambitious about Autism would like to thank all the parents and professionals from the PSP Project who contributed to this book. Their expertise and enthusiasm continues to make a difference to the lives of children and young people with autism and their families.

Ambitious about AutismwouldalsoliketothanktheDepartmentforChildren,SchoolsandFamilies(DCSF)—nowtheDepartmentforEducation(DfE)—forfundingthisproject,ensuringthatthelessonslearnedfromthePSPProjectcanbeusedtobenefitthewidercommunityofparentsandcarersofchildrenandyoungpeoplewithautism.


Disclaimer

This is intended as a guide to partnership-working. It constitutes neither an official advice tool nor a definitive list of recommendations.

Theinformationcontainedis,tothebestofourknowledge,accurateandup-to-dateatthetimeofwriting(2010/2011)butweappreciatethatthepoliticalandlegalenvironmentaffectingchildrenandyoungpeoplemaychangeinthefuture.Somepagesarelikelytobeupdatedorevenalteredradicallyduetotheintroductionofnewgovernmentpoliciesandprocedures.

Wethereforerecommendthatanyoneembarkingonpartnership-workingcarryouttheirownresearchinallareascoveredinthisguide.

©Reservedpublications


46

Appendices.

As a parent, you have the right to put your case in person and/or in writing to the governing body of your child’s school. You should write to the governing body if you want to state your case in person.

Thelettershouldbe:

�� addressedpersonallytothechairofthegoverningbody(theschool,yourlocalcounciloffices,libraryorCitizensAdviceBureaushouldbeabletogiveyouthenameandaddressofthechairofthegoverningbody)

�� handdeliveredorsentbyrecordeddelivery

�� copiedtothelocalauthority(DirectorofEducationorCaseOfficer).

Keepacopyofyourcorrespondence.Thissamplelettermaybehelpfultoyou:

Sample Response to Exclusion

33. http://bit.ly/fnQeW0


47

[Youraddress]

[NameofChairofGovernors] ChairofGovernors[Nameofyourchildsschool][Addressofschool]

[DATE]

Dear[NameofChairofGovernors]

[Yourchild’snameanddateofbirth]

MychildhasbeenexcludedfromschoolandIwouldliketostatemycaseinpersontothegovernors.

Pleasesendmecopiesofmychild’sschoolrecord,theschool’sbehaviour/disciplineandspecialeducationalneedspolicies,togetherwithanywitnessstatements,includingmychild’sstatement.Iwouldliketobringanadvisertothemeetingwithmeandlookforwardtohearingfromyouregardingasuitabledateforustomeet.

Yourssincerely,

[Yoursignatureandname]

[fromtheNationalAutisticSociety]33


48

Appendices.

Keeping an accurate record of your child’s exclusion may help identify patterns ofbehaviour or other factors which can contribute to the planning and review ofyour child’s progress and support needs at school.

Youmayfindthis‘ExclusionRecord’(producedaspartoftheDfESfundedTreeHouseConstructiveCampaigning:ParentSupportProject)willhelpyougetaclearerpictureofyourchild’sexclusions.

Thismaybeusefulforyourchild’snextannualrevieworaspartofotherplanningandconsultationmeetingswithyourchild’sschool.

Exclusion Records

Name of Child:

Year Group:

School:

Local authority:

Date of exclusion:

Type of exclusion:

Comments:

Name of Parent:

Contact details:

1. Annual Exclusion Record


49

Name of Child:

School attended:

Type of School:

Date of exclusion:

How has this exclusion been recorded by school? (Pleasetickoneofthefollowing)

Internal Lunchtime Fixed Term Permanent

How were you informed about this exclusion?

Phone Letter Other

Date/time you were contacted:

Please give the name/role of the member of staff who contacted you:Pleasegivedetailsofwhatwassaidorwrittentoexplainthereasonfortheexclusion.Ifthisreferstoaninternalexclusion,wasyourchildgivenanyworktocomplete?

Reason for Exclusion—ifyouareinanydoubtpleaseclarifythereasonforthisexclusionwithyourchild’sschool.

Code Reason Tick CommentPP PhysicalassaultagainstapupilPA PhysicalassaultagainstanadultVP Verbalabuse/threateningbehaviouragainstapupilVA Verbalabuse/threateningbehaviouragainstanadultBU BullyingRA RacistabuseSM SexualmisconductDA DrugandalcoholrelatedDM DamageTH TheftDB PersistantdisruptivebehaviourOT Other

Name of Parent:

Contact details:

2. Exclusion Record


Address ThePearsNationalCentreforAutismEducation,WoodsideAvenue,LondonN103JATelephone 02088155444Facsimile 02088155420Email [email protected] AmbitiousAboutAutism.org.ukCharitynumber1063184

shaping children's services together

Documents

local authority services

basic communication

secure appropriate education

social interaction difficult

better provision

hundreds of parents

large numbers of parents1

young people