Autism Progress Report

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Progress Report on Tink Autism:the updated strategy for adultswith autism in England.

January 2016


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Title: Progress Report on Think Autism: the updated strategy for adults withautism in England

Author: Social Care , Local Government and Care Partnership Directorate,Department of Health

Document Purpose: Policy

Publication date: January 2016

Target audience: Local Authority CEs, Clinical Commissioning Group CEs,NHS Trust CEs, Care Trust CEs, Foundation Trust CEs, Health and WellbeingBoards, Directors of Public Health, Medical Directors, Directors of Nursing,Director of Adults Social Services, NHS Trust Board Chairs, Special Health

Authority CEs, Allied Health Professionals, GPs, Communications Leads,Emergency Care Leads, Directors of Children’s Social Services, Youthoffending services, Police, NOMS and wider criminal justice system,Coroners, Royal Colleges, Transport bodies, Third sector organisations,Health Education England, Higher Education Institutions and Universities

Contact details:

Write to: Department of Health, Social Care, Local Government and CarePartnership Directorate, Area 313A, 3rd Floor, Richmond House, LondonSW1P 2NS

ore-mail: [email protected]

This document can be accessed at www.Gov.UK

© Crown copyright 2016

You may re-use this information (excludinglogos) free of charge in any format ormedium, under the terms of the OpenGovernment Licence.

To view this licence, visithttp://www.nationalarchives.gov.uk/doc/ open-government-licence/ or e-mail:[email protected] .

Where we have identified any third partycopyright information you will need to obtain

permission from the copyright holdersconcerned.

This document is also available in easy read.

mailto:[email protected]://www.nationalarchives.gov.uk/doc/open-government-licence/http://www.nationalarchives.gov.uk/doc/open-government-licence/mailto:[email protected]:[email protected]:[email protected]://www.nationalarchives.gov.uk/doc/open-government-licence/http://www.nationalarchives.gov.uk/doc/open-government-licence/


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Contents

Foreword 3

Introduction 5

About autism 6

Sections

1. Delivering quality care to thosewho need it and making a positiveimpact on people’s health in anefficient way 7

Progress and planning 8

Training 16

Transition from childhood toadulthood 22

2. A core part of health andcare delivery

Diagnosis 37

3. Making sure that people havegood experience of care and services

I nnovation, awareness andtechnology 39

Transforming care for people who

have autism 45

4. Preventing people from havingepisodes of crisis

Supporting people with autism 48

5. Joining up better the NHS, socialcare and other local partners

Employment for adults with autism 59

Contact with the criminal justicesystem 64


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Appendix A ActionsfromThink Autism(2014) 70

Appendix B AutismInnovationFundprojects 75

Appendix C Abbreviations 82

Appendix D Autisminformationcollectedorplanned 84

Appendix E

ProgressReportonThink Autism: Actionsgoingforward 88


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3Foreword

Foreword

Justover18monthsagoyouwereaskedtoThink Autism.AndwithoverhalfamillionpeopleinEnglandestimatedtohaveautismthiswasdoneforaverygoodreason.Yourorganisationsandserviceswillbecomingintocontactwithpeopleontheautisticspectrumonadailybasis.By

engagingwiththosepeopleeffectivelyyoucanensurethattheydonotmissoutonaccessingservicesandsupport,andbydoingsoyoucanhaveapositiveinfluenceontheirmentalandphysicalhealth.

TohelpwithlocalimplementationandplanningitwasrightthatmanyoftheactionsinThink Autismwereforgovernmentdepartmentsandagenciesto

playtheirpartinpolicydevelopmentandimprovingoperationalprocesses,andsohelpyouinyourimportantwork.Think

Autismfollowedthereviewofthe2010autismstrategyFulfilling and RewardingLives,andwaspublishedinApril2014.ItsetoutanupdatedprogrammeofactiontodelivertheaimsoftheAutismAct.Thisreportsummarisesprogresssincethenandlooksathowthisworkwillgoforward

overthenext18monthswithanumberofrefreshedactionsbuildingonprogressmade.Alistoftheoriginalactionsisfoundat Appendix A .

Think AutismcontinuedtohighlighttherolethatlocalauthoritiesandNHSbodiesshouldhaveinplanningservicesforadultswithautism.Itplacedgreateremphasisoninvolvementandawarenesswithinthelocal

communityandonwaystolookdifferentlyatsupportandengagement.Italsomovedtheoriginalvisionofthestrategyon,includinganincreasedfocusonareassuch

asyoungpeople,criminaljusticeandemployment.Theethosofprevention,personalisationandopportunityrunsthroughtherevisedstrategy.

LocalauthoritiesandtheNHSneedtoworkincollaborationwiththeirpartnersto

continuetoimplementtheautismstrategy.Crucially,atthecoreofThink Autism,peoplewithautismneedtohaveaccesstoaclearpathwaytodiagnosisandknowthatthispathwayisalignedwithcareandsupportassessments,andthatthereispostdiagnosticsupportavailableevenifthepersondoesnotmeetsocialcaresupportcriteria.Commissioningdecisionsneedtobebasedonknowledgeand

awarenessofautism,theneedsofthelocalpopulation,andinformedbypeoplewithautismandtheirfamilies.

Governmentpolicyisassistingpeoplewithautismonthejourneytoreachtheirpotential,tohavefulllivesandtoliveasindependentlyaspossible.ItisalsorightthatwelinkworkinautismtotheGovernment’skeypriorities,asafterallthe

markofacivilisedsocietyisthesupportthatisofferedtovulnerablepeopletoprovidethemwithopportunitiesandimprovetheirlives.

Thenewactionsthataresetoutincludethosethat:

• underpinsuccessfulimplementationofthemajorreformstotheSpecial

EducationalNeedsandDisabilitysysteminimprovingsupportforchildrenandyoungpeople,includingagreaterfocusonpreparingfor


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4 ProgressReportonThink Autism:theupdatedstrategyforadultswithautisminEngland

adulthoodandextendingsupportfrom0–25yearsold;

• canbetterfocussupporttohelpwithemploymentopportunities,bothtothe jobapplicantandthepotentialemployer,atinterviewandifsuccessfulonceinwork;

• achievebetterawarenessofautismwithinthecriminaljusticesystem,ifthepersonwhohasautismisavictim,awitnessoranallegedperpetratorofacrime;

• willallowbetterreportingofprogressandtheuseofinformation,tohelpcommissionersplanservicesandforpeoplewithautismandtheirfamiliestoseewhatishappeningintheirlocalareas.

Failuretoprovideadequateservicesormakereasonableadjustmentscanhavecostlyconsequencesforpeoplewithautismandforservices.Atworstitcanmeanthatindividualsfallintocrisissituationsandthenrequireexpensive

mentalhealthservicesorresidentialcare,donotfulfiltheirpotentialinemployment,orenduplosingtheirlibertyiftheycomeinto

contactwiththepoliceandthecourts.AnumberofstudieshaveestimatedthecostsofautismandtheNationalAutismProjectsupportedbytheShirleyFoundationiscurrentlylookingatthisissue.

TheDepartmentofHealthisalsoworkingwithUniversityCollegeLondontolookatevidenceofcosteffectiveapproachesforsupportingpeoplewithautism.Awareness

workbytheAutismAllianceUKisalsodoingmuchtoincreaseunderstandingofautismwithinpartsofthepublicandprivatesectors.Otherautisticcharitiesarealsoplayingtheirpartwithsimilarwork.Ouraimistosupportthebetterjoiningupofworkinthisarea.

TherefreshingoftheactionsinThink Autismshouldensurethatmomentumisnotlost

overthenext18months.AswegoforwardwithnationalpolicyandlocalplansitisimportantthatwecontinuetoThink Autism.

Alistair Burt Justin Tomlinson Edward Timpson Andrew Selous

Ministerfor Ministerfor MinisterforChildren MinisterforPrisons,Communityand DisabledPeople andFamilies Probation,SocialCare Rehabilitationand

Sentencing


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5Introduction

Introduction

ThefocusoftheworkoutlinedinThink Autism,1theupdatetothe2010autismstrategy,2wastoimproveoutcomesforpeoplewithautismbydevelopingpoliciesthathelpedlocalimplementation.Itcrossedmanygovernmentdepartmentsandagencies:fromhealthandsocialcare

toemployment,educationandcriminal justice.

ThisprogressreportsetsautismandtheaimsofThink Autisminthecontextofgovernmentreformto:

• deliverqualitycaretothosewhoneeditandmakingapositiveimpactonpeople’shealthinanefficientway;

• beacorepartofhealthandcaredelivery;

• makesurethatpeoplehaveagoodexperienceofcareandservices;

• preventpeoplefromhavingepisodesofcrisis;

• joinupbettertheNHSandsocialcare,andotherlocalpartners.

Thereportsetsoutprogressagainsteachofthe33Think Autismactions.Theyarereferredtowithinthetextandlinkedtothelistofactionssetoutin Appendix A .Whereappropriate,furtheractionsforthecoming18monthshavebeenagreedtocontinuemomentumandtheyaresetout

ineachsectionandat Appendix E.

Withineachsection,progresshasalsobeenhighlightedfromthelatestlocalauthorityareaautismselfassessmentexercise.Eachsectionisintroducedbywhatpeoplewithautismsaidwhentheautismstrategywasbeingreviewedduring2013/14,toremindtheGovernmentandlocalservicesthattheviewsoftheautism

communityshouldbeatthecentreofallthatwedo.Casestudies,includingsummariesofAutismInnovationFundprojects,arealsoincludedtoillustrategoodpracticeandinnovativeapproaches.

1. Think Autism: Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update

(November2014).Availableat:www.gov.uk/government/publications/thinkautismanupdatetothe-governmentadultautismstrategy

2. Fulfilling and Rewarding Lives: The strategy for adults with autism in England (March2010).Availableat:

http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/

Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369

http://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategyhttp://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategyhttp://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369http://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategyhttp://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategy


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About autism

Throughoutthisprogressreport,unlessotherwisespecified,theterm‘autism’isused

torefertoalldiagnosesontheautismspectrum,includingAspergersyndrome,highfunctioningautism,Kannersyndrome3orclassicautism.

Autismoccursearlyinaperson’sdevelopment.Someonewithautismcanshowmarkeddifficultieswithsocialcommunication,socialinteractionandsocialimagination.Theymaybepreoccupiedwithaparticularsubjectorinterest.Autismisdevelopmentalinnatureandisnotamentalillnessesoralearningdisability.However,peoplewithautismmayhaveadditionalorrelatedproblems,whichfrequentlyincludeanxiety.Thesemayberelatedtosocialfactorsassociatedwithfrustrationorcommunicationproblemsortopatternsofthoughtandbehaviourthatarefocusedor

literalinnature.

Apersonwithautismmayalsohavesensoryandmotordifficulties,includingsensitivitytolight,sound,touchandbalance.Thesedifficultiesmayresultinarangeofregulatorybehaviours,includingrocking,selfinjury,andavoidancesuchasrunningaway.Oftenthesearecopingmechanisms.Therecanalsobearepetitiveorcompulsiveelementtomuchofthebehaviourofpeoplewithautism.Thepersonmayappeartobechoosingtoactinaparticularway,buttheirbehaviourmaybedistressingeventothemselves.However,thesebehaviourscanalsobeanimportantselfcalmingmechanismandshouldnotbestoppedordiscouragedorseenasadeficit.

Autismisknownasaspectrumcondition,bothbecauseoftherangeofdifficultiesthataffectadultswithautism,andthewaythatthesepresentindifferentpeople.Forexample,Aspergersyndromeisaformofautism.PeoplewithAspergersyndrometypicallyhavefewerproblemswithspeakingthanothersontheautismspectrum,buttheydostillhavesignificantdifficultieswithcommunicationthatcanbemaskedbytheirabilitytospeakfluently.Theyarealsooftenofaverageoraboveaverageintelligence.

3. Kanner,L.(1943).Autisticdisturbancesofaffectivecontact.Nervous Child 2:217–250.Availableat:

http://simonsfoundation.s3.amazonaws.com/share/071207leokannerautisticaffectivecontact.pdf

http://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdfhttp://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf


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1. Deliveringqualitycaretothosewhoneeditandmakingapositiveimpactonpeople’shealthinanefficientway 7

1. Delivering quality care to those who need it

and making a positive impact on people’s healthin an efficient way

1.1 Think AutismwasaboutsupportinglocalauthoritiesandtheNHStoovercomechallengesandbarrierstomakea

differenceforpeoplewithautism.Thissectionlooksatprogressmade,theroleofplanningatalocallevelandtheimportanceofstaffbeingtrainedaboutandawareofautism.TheextensivereformstotheSpecialEducationalNeedsandDisability(SEND)systemfor0–25yearolds4showhowresources,ifusedeffectively,willmakeapositiveimpactonpeoplewithautismthroughouttheirlives.

NationalAutismProgrammeBoard

1.2 ThecrossgovernmentNational AutismProgrammeBoardhascontinuedtooverseeprogressonthestrategyandwill

continuetodoso.Newselfadvocatesandfamilycarermembershavejoinedtheboardanditsfullmembershipcanbe

viewedat[Think Autism Action 2].5

1.3 Goingforwardtheboardwillbejointlychairedbyapersonwhohasautismorisacarerforapersonwithautism. TheboardhasreceivedregularreportsonprogressagainsttheactionsinThink Autismandthisreportisasummaryofprogresssofar[Think Autism Action 3]. Itiscentraltotheautismstrategythatallactions,nationally

andlocally,shouldbetakenforwardinacoproductivewaythatinvolvesandengagespeoplewithautismandtheirfamiliesandcarersaspartners,respectingtheinsightandexpertisethattheirexperienceandlivesbring.

4. Special Educational Needs and Disability Code of Practice: 0 to 25 years (January2015).Availableat:

www.gov.uk/government/publications/sendcodeofpractice0to25

5. Availableat:www.gov.uk/government/groups/aapb#membership

http://www.gov.uk/government/publications/send-code-of-practice-0-to-25http://www.gov.uk/government/groups/aapb#membershiphttp://www.gov.uk/government/groups/aapb#membershiphttp://www.gov.uk/government/publications/send-code-of-practice-0-to-25


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Progressandplanning

What people with autism want (asheard during the review of the 2010strategy)

I want my views and aspirations to betaken into account when decisions are

made in my local area. I want to knowwhether my local area is doing as well

as others.

I want autism to be included in local

strategic needs assessments so that person-centred local health, care and support services, based on good information about local needs, are available for people with autism.

Progress indicated in the 2014 self-assessment exercise

• JointStrategicNeedsAssessment

(JSNA)–AmajorityoflocalauthoritiesreportedincludingautismintheirlocalJSNA(101;66%)andcommissioningplans(117;77%),with92(61%)reportingthattheneedsofchildrenandyoungpeoplewithautismwerespecificallyconsidered.PublicHealthEngland’sLearningDisabilitiesObservatoryteam

analysethecontentofJSNAsannuallytomonitorinclusionofpeoplewithlearningdisabilities.

Thisyeartheywillalsoreportoncoverageofadultsandchildrenwithautism.

• Dataaboutpeoplewithautismaccessinghealthandsocialcareservices–Some11(7%)localauthoritiesreportedthattheyroutinelycollectandsharedataaboutallhealthandsocialcareusebypeoplewithautism;while123(81%)reportedthattheywereworkingtowardsthis.

• Atotalof125(82%)localauthoritiesreportedthattheycollectdataonthenumberofpeoplewithautismeligibleforsocialcare.

• Some90(59%)localauthoritiesreportedthatcorrespondingclinicalcommissioninggroups(CCGs)werefullyinvolvedinplanningandimplementationoftheautismstrategy.

• Atotalof59(39%)localauthoritiesgavethemselvesthehighestratingforengagingpeoplewithautismandtheircarersfullyintheplanningandimplementationoftheautismstrategy.

• Some12(8%)localauthoritiesreportedhavingaclearpolicyandwidelyimplementedpolicyfor

makingreasonableadjustmentstocouncilprovidedservicestoimproveaccessandsupportforpeoplewithautism;while19(13%)reportedevidenceofimplementationofreasonableadjustmentstootherpubliclyorcommerciallyprovidedpublicservices.


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91. Deliveringqualitycaretothosewhoneeditandmakingapositiveimpactonpeople’shealthinanefficientway

Autismstatutoryguidance

1.4 Updatedautismstatutoryguidance

wasissuedinMarch20156followingaperiodofconsultationduringNovemberandDecember2014.7ItsupportsThink

AutismbygivingguidancetolocalauthoritiesandNHSbodiesabouttheexercise,respectively,oftheirsocialcareandhealthservicefunctions,forthepurposeofsecuringtheimplementationofthestrategyanditsupdate[Think Autism

Action 1].Thestatutoryguidancebuildson

progressmadeoverthelastfiveyearsandsetsouttheexpectationsforlocalareassotheycancontinuetodevelopservicesandsupportinwaysthatreflecttheassessedneedsandprioritiesoftheircommunities.

1.5 Additionally,aswellasreflectingthekeylegislationandhealthandsocialcarereformssince2010,theguidanceputsgreateremphasisoninvolvementand

awarenesswithinlocalcommunities.

Widerlegislativechanges

1.6

Recentlegislativechangeswillalsoenablelocalservicestosupportpeoplewithautismandtheirfamiliesbetter,andtheyarealsooutlinedinthisstatutoryguidance.TheCareAct20148placesastrongemphasisonpreventingand

delayingneedsforcareandsupportby

makingsurethatthereisappropriateinformationandadviceforpeople,supportforcarers,andpromotingintegration

betweensocialcareandhealthcareservices.Italsoplacesadutyonlocalauthoritiestopromoteaperson’swell-beingwhencarryingoutanyoftheircareandsupportfunctionsinrespectofthatperson.Thisisexploredinmoredetailinsection 4ofthisreport.TheChildrenandFamiliesAct20149willhelptosupportyoungpeopleinpreparingforadulthoodandthisisoutlinedinmoredetaillaterin

thissection.

Thenationalautismself

assessmentexercise

1.7

Therehavebeentwopreviousselfassessmentexercisesundertakenbylocalauthoritiesandtheirsocialcare,healthandotherpartners.Abaselineassessmentwas

carriedoutin2011,10

withafollowupassessmentcompletedin2013.11Theselfassessmentsenableadultswithautism,theirfamiliesandcarers,andautismrepresentativegroupstoholdservicestoaccountandassesswhetherchangesaretakingplace.Theselfassessmentexerciseenablescomparisonandbenchmarkingacrosslocalauthorityareasandsupportstheidentificationandplanningforareas

wherefurtheractionisrequired.

6.

Statutory Guidance for Local Authorities and NHS Organisations to Support Implementation of the Adult

Autism Strategy (March2015).Availableat:www.gov.uk/government/uploads/system/uploads/attachment_

data/file/422338/autismguidance.pdf

7.

The Government Response to the Consultation on Revised Statutory Guidance to Implement the Strategy for

Adults with Autism in England (March2015).Availableat:www.gov.uk/government/uploads/system/uploads/

attachment_data/file/417889/Government_Response.pdf

8. Care Act 2014.Availableat:www.legislation.gov.uk/ukpga/2014/23/contents/enacted/data.htm

9. Children and Families Act 2014.Availableat:www.legislation.gov.uk/ukpga/2014/6/contents/enacted/data.htm

10. LearningDisabilitiesObservatory(November2012). Autism Self-Assessment 2011: Issues from local

authorities.Availableat:www.improvinghealthandlives.org.uk/gsf.php5?f=16323&fv=17474

11. PublicHealthEngland(August2014). Autism Self-Assessment Exercise 2013: Detailed report and thematic

analyses.Availableat:www.improvinghealthandlives.org.uk/gsf.php5?f=312684&fv=20380

http://www.gov.uk/government/uploads/system/uploads/attachment_data/file/422338/autism-guidance.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/422338/autism-guidance.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417889/Government_Response.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417889/Government_Response.pdfhttp://www.legislation.gov.uk/ukpga/2014/23/contents/enacted/data.htmhttp://www.legislation.gov.uk/ukpga/2014/6/contents/enacted/data.htmhttp://www.improvinghealthandlives.org.uk/gsf.php5?f=16323&fv=17474http://www.improvinghealthandlives.org.uk/gsf.php5?f=312684&fv=20380http://www.improvinghealthandlives.org.uk/gsf.php5?f=312684&fv=20380http://www.improvinghealthandlives.org.uk/gsf.php5?f=16323&fv=17474http://www.legislation.gov.uk/ukpga/2014/6/contents/enacted/data.htmhttp://www.legislation.gov.uk/ukpga/2014/23/contents/enacted/data.htmhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417889/Government_Response.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417889/Government_Response.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/422338/autism-guidance.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/422338/autism-guidance.pdf


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1.8 ThethirdselfassessmentprotocolwaspublishedinDecember2014forcompletionbyMarch2015[Think Autism

Action 7].12Itincluded70substantivequestions,includingquestionsaboutpeoplewhocareforpeoplewithautism[Think Autism Action 22].Theprincipalquestions(24ofthem)askedlocalauthoritiestoratetheirprogressasred,amberorgreen(RAG)accordingtoasetofspecifiedcriteria.Moreevidencewasrequiredtoscoregreenoramberthistime.

Afurther15questionsaskedfornumbers,

particularlyaboutadultspassingthroughdiagnosticservicesandthewaitingtimesforthis.Therewasalsoanopportunitytoprovideuptofiveaccountsofpersonalexperiencestoillustratetheanswers.Atotalof21RAGoryes/noquestionswereeitheridentical(10questions)orverysimilar(11questions)tothoseinthe2013selfassessmentexercise.Allbutthreelocalauthoritiessubmittedreturns.

1.9 Thelargestnumberoflocalauthoritiesratedthemselvesstrongoncareandsupportissuesfollowedbyemployment.

Thelargestnumberratedthemselvesweakonhousingandaccommodation.

1.10 PublicHealthEngland(PHE)hasalsopublished:

• afullreportprovidingdetailsofresponsestoeachquestion,withmapsandchartstoshowthepatternsofprogress;

• detailsofthepersonalexperiencessubmitted;

• anonlineinteractivedisplayoftheresults;

• afulllistingofallresponsesbyalllocalauthorities;

• aspreadsheetversionofallthedatatofacilitatecomparisons.

1.11 TheresultsareavailableonAutismWestMidland’sAutismConnectwebsite13 inaneasilyaccessibleformatallowingindependentcomments[Think Autism

Action 8].

Section Questions Green Amber Red

Planning 9 29% 55% 11%

Training 2 28% 60% 12%

Diagnosis 4 30% 43% 25%

Care/support 4 45% 47% 7%

Housing/accommodation 1 8% 45% 45%

Employment 2 33% 59% 7%

Criminaljusticesystem 2 16% 64% 17%

Some local authorities did not answer every question.

12. Availableat:www.improvinghealthandlives.org.uk/projects/autsaf201415

13. See:https://autismconnect.org.uk/

http://www.improvinghealthandlives.org.uk/projects/autsaf201415https://autism-connect.org.uk/https://autism-connect.org.uk/http://www.improvinghealthandlives.org.uk/projects/autsaf201415


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Autism Connect –autism-connect.org.uk

ThiswebsitewasoriginallydevelopedwithfundingfromtheDepartmentforEducationandwasexpandedtohaveanationalfocuswithAutismInnovationprojectfunding.ThroughAutismConnectitispossibletoconnectwithlikemindedpeople,shareexperiences,andaskandanswerquestionswithintheautismcommunity.Additionally,userscanfind,rateandreviewlocalservicesaswellasautismfriendlyvenues.Alsoreferencedaremanyfreeinformationsheetsonaspectsofautism.Theeventsandcalendarsectionenablesuserstofindandadddetailsoflocaleventsandactivities.

1.12 Goodapproachesandpracticelocallywillalsobepromotedonline,such

asthatinLincolnshire.

Rob Barber, CommissioningOfficer, Specialist Adult Services atLincolnshire County Council, setsout recent developments:

InacollaborationbetweenLincolnshireCountyCouncil,thefourLincolnshireCCGsandmembersofthe

LincolnshireAutismPartnership,welaunchedourAllAgeAutismStrategyforLincolnshireon2April2015,tocoincidewithWorldAutismAwarenessDay.Atthebeginningof2015werelaunchedourAutismPartnershipBoardinreadinessforthereleaseofourstrategy.Thisincludedtheintroductionofreasonableadjustments,suchascommunication

cards,toensurethatmeetingsaremoreaccessibleforpeoplewith

autism.Thepartnershipiskeytohelpingdrivethestrategyforward,so

weneededtoensurethatwehadappropriatestakeholdersonboardcoveringservicesforchildrenandyoungpeople,aswellasadults.Anumberofnewworkinggroupshavebeenestablishedandwehavehadaninfluxofpeopleonthespectrumwhoarenowheavilyinvolvedintheworkwearedoing,whichisgreat.

Additionally,inDecember2014,weappointedanautism‘expertbyexperience’toworkacrosshealthandsocialcarewithinourJointCommissioningTeam.Thishasbeenacrucialsteptoensurethatsomebodywithlivedexperienceofautismisattheheartofourcommissioningworkandcanhelpinformandeducateus,aswellasbedirectlyinvolvedinservice

designanddevelopment.

For further information contact:autism.partnership@lincolnshire. gov.uk

Data

1.13 Goodqualitydataisintegraltothe

successfuldevelopmentandimplementationofautismstrategiesandcommissioning.Localauthoritiesandtheirhealthandwellbeingboards,CCGsandotherpartnersneedtohaveaccesstoascomprehensivedataaspossibleonprevalenceandneed.Butgatheringdataonthenumberofpeoplewithautismandtheirneedscanbechallenging.Healthandadultsocialcareservicesarecurrently

likelytobeawareofonlyaproportionofpeoplewithautism.

mailto:[email protected]:[email protected]:[email protected]


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1.14 LocalestimatesofprevalencecanbecalculatedfromnationaldatausingPANSI14

(ProjectingAdultNeedsandService

Information).Thisdatabaseenablesprojectionsonthepossibleimpactofdemographyandcertainconditionsonlocalpopulations,andallowslocalauthoritiestoestimateunmetneed.EstimatesforchildrenofschoolagewereproducedbytheLearningDisabilitiesObservatoryin2011.15

1.15 Havingagreeddefinitionsofautism

willimprovedatacaptureandanalysis.AsGPsareoftenthefirstpointofcontactforadultswithautism,bothbeforeandafterdiagnosis,theDepartmentofHealth(DH)isworkingwithNHSEnglandandwiththeRoyalCollegeofGeneralPractitioners(RCGP)throughtheirautismclinicalpriorityprogrammetoexplorethefeasibilityofintroducingaReadCodeforAutism[Think Autism Action 18].16 Theintroductionofa

ReadCodeforAutismmayimprovethequalityofgathereddataandleadtomoreeffectivelocalplanningandcommissioningofservicesinrelationtoneed.Inaddition,theRCGPhasdevelopedastandardformatlettertobesenttoGPsbydiagnosticservicesthathasalsobeenapprovedbytheRoyalCollegeofPsychiatrists(RCP)andusesalimitednumberofcodes.

1.16 FromApril2014,localauthoritiesstartedtocollectShortandLongTerm(SALT)17supportdataforusersandcarers

thatrecordstheirprimaryreasonforsupport.Certainhealthconditions,includingautism,arerecordedinpartsofthecollection.ThisenhanceddatasetwaspublishedforthefirsttimeinOctober2015andwillenableDHtocommenceanalysisofthedatatoinformfuturedatacollections.

1.17 DH,inpartnershipwithPHE,establishedadataandinformationworking

groupthatincludestheDepartmentforWorkandPensions(DWP),theDepartmentforEducation(DfE),theMinistryofJustice(MoJ),theHealthandSocialCareInformationCentre(HSCIC)andtheNationalAutisticSociety(NAS),witharemittocompilealistofavailabledatasourcesonautism(at Appendix D )forlocalauthorities.ThegroupwillsetoutitsprogrammegoingforwardbyJanuary

2016[Think Autism Action 19].Aspartofthiswork,theHSCICwillconsiderthelongertermcaseforproducingareportonautisminitsFocus Onseriesdetailinginformationandstatisticsonautism.

14. See:www.pansi.org.uk/

15. LearningDisabilitiesObservatory(May2012).People with Learning Disabilities in England 2011.Availableat:

www.improvinghealthandlives.org.uk/publications/1063/People_with_Learning_Disabilities_in_England_2011

16. NHSInformationCentre(February2010). Access to Healthcare for People with Learning Disabilities.

Availableat:www.hscic.gov.uk/catalogue/PUB08591/acchealcarepeopleardisarep.pdf

17. HSCIC(September2014).Short and Long Term (SALT) Return: Guidance.Availableat:

www.hscic.gov.uk/media/12020/GuidancesupportingSALTcollection/pdf/SALT_Guidance_v1_5.pdf

http://www.pansi.org.uk/http://www.improvinghealthandlives.org.uk/publications/1063/People_with_Learning_Disabilities_in_England_2011http://www.hscic.gov.uk/catalogue/PUB08591/acc-heal-care-peop-lear-disa-rep.pdfhttp://www.hscic.gov.uk/media/12020/Guidance-supporting-SALT-collection/pdf/SALT_Guidance_v1_5.pdfhttp://www.hscic.gov.uk/media/12020/Guidance-supporting-SALT-collection/pdf/SALT_Guidance_v1_5.pdfhttp://www.hscic.gov.uk/catalogue/PUB08591/acc-heal-care-peop-lear-disa-rep.pdfhttp://www.improvinghealthandlives.org.uk/publications/1063/People_with_Learning_Disabilities_in_England_2011http://www.pansi.org.uk/


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Good practice on types of data to collect

Toachievethemostaccuratelocalinformationaboutthenumbersofadultswith

autismandtheirneeds,goodpracticesuggestsincludingthenumberofpeoplewithautism:

• fromBlackAsianMinorityEthniccommunities;

• bygender(men,womenorother),includingtransgender;

• inemployment;

• likelytoneedemploymentsupporttogainorstayinwork;

• placedinthearea(andfunded)byotherlocalauthorities;

• placedoutofareabylocalauthoritiesand/orNHSbodies;• inhospitalorlivinginotherNHSfundedaccommodation;

• resettledfromlongstaybedsorNHSresidentialcampusestocommunityprovision;

• livingathomeontheirown,orwithfamilymembers,orwitholderfamilycarersandnotreceivinghealthorsocialcareservices.

Keyprofessionalstoengageinthisevidencegatheringare:

• socialcareprofessionals;• GPs(whocouldidentifynumbersofpeopleontheirpracticelistwhohaveanautismdiagnosisandcouldalsofollowupwithdiagnosticservicestofindoutwhethertheirpatientshavebeengivenanautismdiagnosisifthisinformationhasnotcomebackafterreferral);

• Jobcentremanagers;

• employmentsupportproviders;

• localautismgroupsandbranchesofnationalautismthirdsectororganisations.


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Information-sharing agreement – Leicester, Leicestershire and Rutland

Jane Forte, Commissioning Manager for Mental Health, Learning Disabilities

and Autism at Leicester City Council, outlines arrangements put in placelocally:

Asthreelocalauthorities,threeCCGs,twolocalhospitaltrustsandspecialisedcommissioningservices,wealreadyworkcloselyonTransformingCareandtheLearningDisabilityandAutismselfassessmentexercises.WealsohavejointdeliveryactionplansthatlinkwithBetter Care Together .

Theweaklinkinthisworkwasthesourcingandgatheringofaccuratedata,havingconversationswhenyouknewwhoyouweretalkingaboutbutcouldnotmentionthename,ortwopeoplewiththesameinitialsgetmixedup.Wethereforelookedatwhatinformationwasrequired,whyandfromwhom,sowecouldjustifythereasoningbehindsharingpersonaldata.Thesearethequestions,whichwiththeiranswersarethebasisfortheagreement:

• Whatisthelegalbasis–thelawsthatletyoutosharethisinformation?

• Isthereconsent?

• CanInformationbesharedwithoutconsent?

• Arethereissuesconcerningalackofcapacitytogiveconsent?

• ArethereissuesundertheDataProtectionAct1998?• DoweneedtoconsidertheHumanRightsAct1998?

• Whatinformationdoeseachsignatoryneedtoshare?

• Whoisthedatacontrollerforthisinformation?

• Indemnityrequired?

• Howarewegoingtokeepinformationaccurate?

• Howlongwilltheinformationbekept?

• Howwillweshareandkeepinformationsecure?• Whatifwewanttousetheinformationforsomethingelse?

• Whatdowedoifinformationislost,disclosedormisused?

• Howwillwecheckwhetherourcolleaguesarecomplyingwiththisagreementandifitisstillcurrent?

• Whathappensifthereisamajorsecuritybreach?

• Whatdowedoifweareaskedtodiscloseinformationthatwereceiveunderthisinformationsharingagreement?

• Whoaretheresponsiblepeopleineachorganisation?


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Thepracticalissuesofsharinganddestructionmethods,andsecurityrequirements,werealsotobeagreed.

WearefortunateinthelocalauthoritieshavingcoterminousboundarieswiththethreeCCGsandthetwohospitaltrusts.OneoftheCCGstakestheleadincollatingthe

TransformingCaredata.IntheCityofLeicester,GPdataisononesystemthatisaccessibletotheCCG,whereasLeicestershireCountyandRutlandhavedifferentsystems,whichdonotlink.Children’sservicesareincludedintheagreementbut,again,havedifferentsystemsandinformationstreams.Thesearesomeoftheongoingissues,currentlybeingworkedon.Workisstillbeingundertakenwiththepolice,prisonsandprobationservice,astheyarenotyetsignedup.Theagreementiscurrentlyunderreviewandwillbeamendedtoreflectchangessinceitwasdrawnup–e.g.WinterbourneViewchangingtoTransformingCare.TherearegapsininformationinboththeLearningDisabilitiesandAutismselfassessmentswhereweneedmorerobustdataandpotentiallyneedtoworkwithpartnerstoensurethattheyarecollectingdatainawaythatisusefultoallpartiesinvolved.

Theinformationsharingagreementhasmadeatremendousdifferenceinourabilitytogatherandcrossreferencedataforthemostrecentselfassessmentexercisesandthereforeprovideevidencetosupportthedevelopmentofservices.

For further information contact: [email protected]

Actions going forward

Progress Report (PR) Action 1.PublicHealthEngland’sLearningDisabilitiesObservatoryteamtoundertakeananalysisofJointStrategicNeedsAssessmentstoidentifytheinformationtheyincludeaboutadultsandchildrenwithautismandissueareport.ByendofJanuary2016.

Progress Report (PR) Action 2.TheAutismProgrammeBoardtobejointlychairedbyapersonwhohasautismorisacarerforapersonwithautism.ByFebruary2016.

Progress Report (PR) Action 3.DHtoworkwithpartnerssothatregionalworkshopscanbeheldwithlocalauthorities,theNHSandotherkeystakeholderstosupporttheimplementationofthenewstatutoryguidance,considerprogressmadeandencourageregularnetworkmeetingstopromotebestpracticeandshareinformation.FromDecember2015toMarch2016.

Progress Report (PR) Action 4.ThenextAutismselfassessmentexercisetobeundertakenbyPHEfromApril2016.

Progress Report (PR) Action 5.ThePHEandDHleddataandinformationworking

grouptosetoutitsworkprogrammeforgoingforwardbyendofJanuary2016.


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Training

What people with autism want

I want staff in health and social care services to understand that I have autism and how this affects me.

Progress indicated in the 2014 self-assessment exercise

• Atotalof82(54%)localauthoritiesreportedhavingamultiagency

autismtrainingplan,with60(39%)reportingthatCCGs,primaryandsecondarycarepractitionersareinvolvedinthis.

• Atotalof109(72%)localauthoritiesreportedinvolvementofthepoliceinautismtraining.

• Some38(25%)localauthoritiesreportedinvolvementoflocalcourtservices,and69(45%)reported

involvementofthelocalprobationservice.

• Atotalof44(29%)localauthoritiesscoredthemselvesasgreenonwhetherautismawarenesstraininghasbeenmadeavailabletoallstaffworkinginhealthandsocialcare,includingstaffinchildren’sservices.

ThisincludedhavingacomprehensiverangeoflocalautismtrainingthatmeetsNICE(NationalInstituteforHealthandCareExcellence)guidelinesandhavingapublishedautismtrainingplan.

• Some38(25%)localauthorityareasreportedthatatleastthreequartersoftheirstaffwhocarryoutstatutoryassessmentshaveattendedspecialistautismtraining.

LocalauthoritiesandtheNHS

1.18 Inlinewiththe2010and2015

statutoryguidance,localauthoritiesandtheNHSshouldbeprovidinggeneralautismawarenesstrainingtoallfrontlinestaffincontactwithadultswithautism,sothatstaffareabletoidentifypotentialsignsofautismandunderstandhowtomakereasonableadjustmentsintheirbehaviourandcommunication.Inadditiontothis,localauthoritiesareexpectedtohavemadegoodprogressondevelopingand

providingspecialisttrainingforthoseinrolesthathaveadirectimpacton,andmakedecisionsabout,thelivesofadultswithautism,includingthoseconductingneedsassessments.

1.19 TheregulationssupportingtheCareAct2014requirethoseundertakinganassessmenttohavesuitableskills,knowledgeandcompetenceinthe

assessmenttheyareundertaking,suchasautism.Whereassessorsdonothaverelevantexperienceofthecondition,theyshouldcontactsomeonewhodoes.

1.20 HealthEducationEngland’s(HEE)roleistoensurethattheNHSworkforcehastherightnumbers,skills,valuesandbehaviourstomeettheNHS’s

needsoftodayandtomorrow.Aspartofits2014/15mandatewiththeGovernment,18

HEEhasbeenrequiredtoworkwiththeRoyalCollegesandotherstakeholderstofocusonsupportingautismawarenesstraining.

1.21 InpartnershipwithSkillsforHealth(SFH)andSkillsforCare(SFC),HEEhasscoped,reviewedandcollatedasuiteof

18. DepartmentofHealth(May2014).Delivering High Quality, Effective, Compassionate Care: Developing the

right people with the right skills and the right values – a mandate from the Government to Health Education

England: April 2014 to March 2015.Availableat:www.gov.uk/government/uploads/system/uploads/

attachment_data/file/310170/DH_HEE_Mandate.pdf

http://www.gov.uk/government/uploads/system/uploads/attachment_data/file/310170/DH_HEE_Mandate.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/310170/DH_HEE_Mandate.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/310170/DH_HEE_Mandate.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/310170/DH_HEE_Mandate.pdf


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existingautismawarenessresources.19

Theseresourceswillenabletheworkforcetounderstandtheneedsofadultswith

autism,torespondappropriatelyortomakenecessaryadjustments.TheresourcesweremadeavailableviatheHEEwebsiteinJune2015andlaunchedatanationallearningdisabilityawarenessraisingeventinJuly2015.Aprogrammewidecommunicationstrategyhasalsobeencompleted.

1.22 FundingfromDHhasbeenmade

availableforHEEtoworkinpartnershipwithSFCandSFHtodeveloppositivebehaviouralsupportandautismtrainingtohealthandsocialcareproviders.Fundinghasalsobeenmadeavailabletofacilitatethedischargefrom–andhelpavoidadmissioninto–inappropriatehospitalsettingsofindividualswithalearningdisability,autism,andbehaviourthatchallenges.Thiswill,forinstance,include

fundingauniqueapproachtopositivebehavioursupportinvolvingpeoplewhoworkwith,orarecarersfor,anindividualwithalearningdisability,autism,andbehaviourthatchallenges.ItwillbeimplementedacrossTransformingCarefasttracksitesearlyin2016.

1.23 Thementalhealthandlearningdisabilityprogrammeistakingforward

parityofpracticethatfocusesonphysicalhealth,mentalhealthandintellectualdisability.Attimes,individualswithautismdisplaychallengingbehaviour.Educationandtrainingmaterialsarebeingdevelopedtoensurethattheworkforceisabletoapplymindfulnessapproachessafelyand

reflectively,andmakeadjustmentsinpracticewhereclinicallyindicated.Arevisedlearningdisabilityskillsand

competencyframeworkwilladdresstheneedsofadultswithautism.ThiswillbecompletebyMarch2016.

1.24 AlongtermpieceofworkforHEEistoworkwiththeRoyalCollegestodevelopandincorporateawareness,knowledgeandskillsforNHShealthprofessionalsinrecognisedareasofhealth,includingautism,mentalillness,physicalillnessand

socialsupportneedsacrossallprogrammes.WorkwillcommenceinDecember2015andcontinueinto2018.

1.25 TheHealthandCareProfessionsCouncil(HCPC,formerlytheHealthProfessionsCouncil)isastatutoryregulatorofhealthandcareprofessionalsintheUK.Itdoesthisbysettingandmaintainingstandardsofproficiencyandconductfor

theprofessionsitregulates.Itskeyfunctionsincludeapprovingeducationandtrainingprogrammesthathealthandcareprofessionals–includingchiropodists,podiatrists,dietitians,hearingaiddispensers,occupationaltherapists,paramedicsandphysiotherapists–shouldcompletebeforetheycanregisterwiththeHCPC;andmaintainingandpublishingaregisterofhealthandcareproviderswho

meetpredeterminedprofessionalrequirementsandstandardsofpractice.DHwilldiscusswiththeHCPCtodeterminetheelementofautismawarenesstrainingthathealthandcareprofessionalsshouldmeetwithintheeducationandtrainingprogrammes.

19. Availableat:https://hee.nhs.uk/workprogrammes/mentalhealthandlearningdisability/learningdisability/

educationandtrainingforthewholeworkforce/autismawarenesslearningresources/

http:///reader/full/resources.19http:///reader/full/resources.19https://hee.nhs.uk/work-programmes/mental-health-and-learning-disability/learning-disability/education-and-training-for-the-whole-workforce/autism-awareness-learning-resources/https://hee.nhs.uk/work-programmes/mental-health-and-learning-disability/learning-disability/education-and-training-for-the-whole-workforce/autism-awareness-learning-resources/http:///reader/full/resources.19https://hee.nhs.uk/work-programmes/mental-health-and-learning-disability/learning-disability/education-and-training-for-the-whole-workforce/autism-awareness-learning-resources/https://hee.nhs.uk/work-programmes/mental-health-and-learning-disability/learning-disability/education-and-training-for-the-whole-workforce/autism-awareness-learning-resources/


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Raisingthelevelofautism

awarenessacrossgovernment

1.26 GuidanceandelearningproductsdevelopedasaresultoftheoriginalautismstrategywerepublicisedacrossothergovernmentdepartmentsbyUnaO’Brien,theDH’smostseniorcivilservant[Think Autism Action 12].Othergovernmentdepartmentssharedtheirautismactivity.Some16valuedtheimportanceofautismawareness,welcomedtheworkthathadbeenundertakentoraiseawarenessacross

government,andsharedtheguidanceandelearningproductswiththeirdepartment’sdisabilitynetworkgroups.Inaddition,somemadeavailablethelinkstoonlinetrainingresourcesviatheirintranetstoraiseawarenessamongstaff.

1.27 Departmentshaveputinplacesupportfortheirstaffwhoareontheautismspectrumalongwithwiderstaff

awarenesstraining.Somehaverunstaffawarenesssessionsonthethemesofneurodiversity,theautisticspectrumandattentiondeficithyperactivitydisorder(ADHD);haveprovidedadditionaltrainingformanagersofstaffwithautism;orhaveanautismbuddygroupaspartoftheirdisabilitysupportnetwork.OtherdepartmentshaverequestedsupportfromDHtodisseminateandpromoteautism

awarenesstrainingandtobemadeawareofdevelopmentswithelearningtrainingproducts.

Work experience case study

TheOfficeforNationalStatisticswas

approachedbyathirdsectorautismcharitywhoaskediftheywouldconsiderprovidinganeightweekworkexperienceplacementforayoungmanwithautismwhohadexpressedaspecificinterestinworkingfortheorganisation.ThisindividualhadachievedadegreeinMathematicsandwaskeentogainsomeexperiencewithintheresearch/statisticsfieldinthehopethatitwouldstandhimingoodsteadforpermanentemployment.Theplacementwasverysuccessfulandpavedthewaytoemployment,whichwasobtainedthroughfairandopencompetition.Theexercisewasalsoanimportantlearningexperienceforthoseinvolvedwithmanaging,mentoringandworkingalongsidesomeonewithautism.

Upgradesofautismelearning

trainingandawarenesstools

1.28 FollowingareviewbyJohnSimpson–thenaselfadvocatememberofthe

AutismProgrammeBoard–oftheelearningtrainingfundedbyDHunderthe

original2010autismstrategy,fundingwasmadeavailabletoupdatetheelearningtraining[Think Autism Action 21]toeightorganisationsthathaddevelopedtheirtrainingpackagesin2010/11.

1.29 TheseorganisationsweretheBritishPsychologicalSociety,UniversityofOxford,RoyalCollegeofGPs,RoyalCollegeofNursing,SkillsforHealth,SkillsforCare,

SocialCareInstituteforExcellence,andtheNationalAutisticSociety.


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1.30 Earlierin2015,theorganisationsallsubmittedplansforupdatingtheirelearningandawarenesstoolstoenable

professionalsusingthemfortrainingandawarenesspurposestofollowthemostuptodateapproaches.Eachoftheorganisationssetouthowitwouldupdateitselearningmaterials,includingsharingworkbetweenorganisations.TheorganisationshavefollowedabestvalueapproachtoassistGPs,socialworkers,cliniciansandnursestoupdatetheirautismlearning.Thiswillhaveadirectimpacton

thequalityandeffectivenessoftheservicestheyprovide.Bybuildingstaffcapabilitiesonautismawareness,therewillbebetteroutcomesforpeoplewithautismandtheirfamiliesandabetteruseofpublicresources.Oncompletiontheywillbeaccessibleviahttps://www.gov.uk/ government/news/autismtraining-resources

1.31 Someoftheproposals,forexample,willdevelopelearningmodulesonautismthatappealtoarangeoflearnersbydeliveringknowledgeandunderstandingfromintroductorytospecialisedlevels.Thisincludesdevelopingandupdatingvideoclipsofpeoplewithautism,andcarersrecountingtheirexperiences.TheworkbytheRCGP,forinstance,willbelinkedtotheGPcurriculum,andcanbeusedbyover

50,000RCGPmembersandtheirlocalfacultiesandotherrelevantnetworks.

1.32 Theelearningcontentupdateswillincludeclearlydefinedobjectives,educationalmaterialandselfassessmentstofacilitateengagementandreflection.Alltheorganisationsarecurrentlyintheprocessofundertakingtheirupdates.

DepartmentofHealthstaffautism

awarenesstraining

1.33 WorkisongoingsothatstaffinDHanditsarm’slengthbodies(organisationsthatdeliverpublicservicesbutarenotgovernmentdepartments)haveaccesstotrainingonautismaspartoftheirequalityanddiversitytraining[Think Autism

Action 11].DHwantstoleadthewayandisworkingtowardsdeliveringgoodqualityautismawarenesstrainingtoitsstaffinpartnershipwithpeoplewhohaveautism.

1.34 Theinteractivesessionswillraiseawarenessontheissuesfacingpeoplewithautismandprovidepracticalhelp,adviceandsharedexperienceondevelopingpolicy,communications,hostingmeetingsinvolvingpeoplewithautism,andhowtheseapproachescanbenefiteveryone.

Thesessionswillbemadeavailabletoallpolicymakersandstaffwhocommunicate

withthepublic,tothosewhowanttoincreasetheirawarenessoftheissuesaroundautism,andtothosewhomayworkwithpeopleonthespectrum.Followingthesessions,DHwillprovidelinksandsignpoststafftoresourcesforcontinuedlearning.Inaddition,DHwillexplorewhetherautismcouldbeincludedinanewpolicytrainingprogrammethathasbeenestablishedforstaff,andthroughtheConnecting

Programmewilldiscussthepossibilityofpromotingautismrelatedplacementsforstaffaspartoftheirongoinglearninganddevelopment.DHwillencourageitsarm’s-lengthbodiestofollowasimilarapproachwithintheequalityanddiversitytrainingfortheirstaff.

Socialworktraining

1.35 DHworkedwiththethenCollegeofSocialWorktocommissionthedevelopmentofacomprehensivecontinuing

https://www.gov.uk/government/news/autism-training-resourceshttps://www.gov.uk/government/news/autism-training-resourceshttps://www.gov.uk/government/news/autism-training-resourceshttps://www.gov.uk/government/news/autism-training-resourceshttps://www.gov.uk/government/news/autism-training-resourceshttps://www.gov.uk/government/news/autism-training-resources


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professionaldevelopment(CPD)frameworkforsocialworkers.ThiswasissuedinOctober2015.Aguidetoimprovethe

knowledgeandskillsofsocialworkersworkingwithpeoplewithautism[Think Autism Action 20]hasalsobeenpublished.Bothareavailableathttps://www.gov.uk/government/publications/learningresourcesforsocialworkwith-adultswhohaveautism.

Transportrelatedissues

1.36

TheDepartmentforTransport(DfT)reviewedtheuseofaderogationappliedunderEURegulation181/201120exemptingbusandcoachdriversfromundertakingmandatorydisabilityawarenesstrainingin2014,ayearafteritsintroduction[Think Autism Action 14].Thisreviewwasinformedbyaninformalconsultationwithbusindustryrepresentatives,disabilitystakeholders,andcharitieswithaninteresttodeterminewhetherdriversarereceivingadequatedisabilityawarenesstrainingunderthecurrentvoluntaryarrangement.AsummaryofresponsestothisreviewwaspublishedontheGov.ukwebsiteinJanuary2015.21

1.37 ThefindingsofthereviewledtodiscussionswiththeDisabledPersons

TransportAdvisoryCommittee(DPTAC),theGovernment’sstatutoryadvisersonaccessibletransport,aboutundertakingaresearchprojectonthequalityandimpactofdisabilityequalityawarenesstrainingforbusandcoachdrivers.Theaimbeingthatthiswillthenresultinthedevelopmentofgoodpracticeguidanceondisabilityawarenesstrainingpackagesforthesedriversandwillbemadeavailableto

operatorstoassisttheminthe

developmentanddeliveryoftrainingintherunuptoitbecomingcompulsoryin2018.

TheworkwillbeginthisJanuaryandwill

concludefullyintheautumn.DfTisalsoconductingresearchintotheimpactofaperson’simpairmentwhenaccessingtransportandthesocialandeconomiclossesasaresultofrestrictedaccess.Theoverallaimofthisprojectistoidentifywhatevidenceexistsontheimpactofarangeofimpairmentsonanindividual’sabilitytoaccesstransport(thesamplingincludesautism)andwhatevidenceexistsonthe

social,economicandcommercialcosts(andbenefits)ofafullyaccessibletransportsystem.TheevidencereviewreportwasreceivedinOctober2015andiscurrentlybeingconsideredbyDfTofficialsandwillbepublishedthisJanuaryontheGOV.UKwebsite.

Nationalbusconcession

applicationforms

1.38

ThenationalbusconcessionprovidesalmostamilliondisabledpeoplewithfreeoffpeakbustravelthroughoutEngland.Eligibilityforthedisabledperson’sconcessionisgovernedbysevenlegalcriteria,againstwhichlocalauthorities,whichadministertheconcession,areresponsibleforassessingapplicants.DfT

providesauthoritieswithguidancetohelpthemunderstandthecriteriaandimplementtheminafairandconsistentmanner.Ultimately,however,localauthoritiesremainlegallyresponsibleforadministeringtheconcessionconsistentwithrelevantlegislation.

1.39 Sometimesitcanbemoredifficultforpeoplewithcertaincategoriesof

disabilitytodemonstratetheirentitlementto20. Availableat:http://eurlex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:055:0001:0012:EN:PDF

21. See:www.gov.uk/government/publications/busandcoachdriverssummaryofdisabilityawareness-

trainingreview

https://www.gov.uk/government/publications/learning-resources-for-social-work-with-adults-who-have-autismhttps://www.gov.uk/government/publications/learning-resources-for-social-work-with-adults-who-have-autismhttps://www.gov.uk/government/publications/learning-resources-for-social-work-with-adults-who-have-autismhttps://www.gov.uk/government/publications/learning-resources-for-social-work-with-adults-who-have-autismhttp://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:055:0001:0012:EN:PDFhttp://www.gov.uk/government/publications/bus-and-coach-drivers-summary-of-disability-awareness-training-reviewhttp://www.gov.uk/government/publications/bus-and-coach-drivers-summary-of-disability-awareness-training-reviewhttps://www.gov.uk/government/publications/learning-resources-for-social-work-with-adults-who-have-autismhttp://www.gov.uk/government/publications/bus-and-coach-drivers-summary-of-disability-awareness-training-reviewhttp://www.gov.uk/government/publications/bus-and-coach-drivers-summary-of-disability-awareness-training-reviewhttp://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:055:0001:0012:EN:PDF


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theconcessionthanitisforothers.DfTiscurrentlyupdatingatechnicalguidancedocumentthatprovidesadviceon

accessiblecommunicationsandapplicationprocesses.DfTalsoexpectstoreviewtheeligibilityguidancesoon,andwillconsiderhowitcanhelplocalauthoritiestoensurethateveryoneentitledtousetheconcessionishelpedtoaccessit.Thismightincluderecommendationsregardingtheinformationrequestedonapplicationforms.Anyfuture

changestoeligibilityguidancewillalsobeconsultedonwithDPTAC.

1.40 AtpresentDfTdoesnothavelegalpowerstorequireauthoritiestouseaspecificapplicationform.However,byamendingitsguidanceDfThopestoinfluenceauthoritiesintomakingchangesthatwillhelpallpotentialusers,includingpeoplewithautism,toapplyforandusethenationalbusconcession.

Actions going forward

Progress Report (PR) Action 6.HEEtodeveloparevisedlearningdisabilityskillsandcompetencyframeworkthatwilladdresstheneedsofadultswithautismbyMarch2016.

Progress Report(PR) Action 7.HEEtodevelopandincorporateawareness,knowledgeandskillsinrecognisedareasofhealth,includingautism,mentalillness,physicalillnessandsocialsupportneeds,acrossallprogrammesforNHShealthprofessionalsby2018.

Progress Report (PR) Action 8.DHtoapproachtheHCPCtodeterminethelevelofautismawarenessincludedinitscriteriacoveringeducation/trainingforthoseonitsregister,bytheendofFebruary2016.Furtheractiontobeconsideredfollowingtheoutcomeofthediscussions.

Progress Report (PR) Action 9.DHwilllookatfeedbackreceivedfromautismawarenesssessionstosetoutfurtheractionsandencourageothergovernmentdepartmentsandarm’slengthbodiestoreviewautismawarenessfortheirstaffbytheendofMarch2016.

Progress Report (PR) Action 10.TheDfTbusandcoachdriverdisabilityawarenesstrainingresearchtobesplitintotwophases:

• Phase1(bythesummer2016)toconsistofresearchseekingtounderstandthecurrentlevelofdisabilityawarenesstrainingonofferandtheimpactithasondisabledcustomers.

• Phase2(bythesummer2016)todevelopgoodpracticeguidanceonbusandcoachdisabilityawarenesstraining.Theguidancewillprovideadetailedspecificationontheneedsofdisabledpassengersandtheexpectedconductof

busandcoachdriversatalldifferentstagesofthejourney.Theguidancewillalsoincluderecommendationsonevaluationschemesandprovidedetailedinformationonthedesiredlearningoutcomes.


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Transitionfromchildhoodto

adulthood

What people with autism want

I want the same opportunities aseveryone else to enhance my skills, to

be empowered by services and to be as independent as possible.

Progress indicated in the 2014

self-assessment exercise• Atotalof68(45%)localauthorities

ratedthemselvesasgreenonconsiderationoftheparticularneedsofyoungpeoplewithautisminthetransitionprocess.Thisincludedhavingtraininginclusiveofyoungpeople’sservices,carryingoutanalysisoftheneedsofyoungpeopleincludingthosewithout

education,healthandcareplans,havingspecialistcommissioningwherenecessary,andmakingappropriatereasonableadjustments.

TheChildrenandFamiliesAct2014

1.41 TheChildrenandFamiliesAct2014

introducedthemostsignificantreformstotheframeworkforchildrenandyoungpeoplewithspecialeducationalneedsordisabilities(SEND)for30years.EffectiveimplementationofthereformssetoutinPart3oftheActisimprovingthewayneedsareidentifiedandsupportisprovided.Theaimistosecurebetter

outcomesforchildrenandyoungpeoplewithspecialeducationalneedsordisabilitiesfrom0to25yearsofage,

includingthosewithautism,andtheirfamilies.

1.42 TheChildrenandFamiliesActtookeffectinSeptember2014,andthereformsarecurrentlybeingembedded.DfEismonitoringnationalimplementation,workingwiththesectorandgatheringfeedbackonhowthetransitionisgoing,andprovidingsupporttolocalauthorities.

Asthereformsbedin,itisexpectedthatchildren,parentsandyoungpeoplewillhavebetterinformationaboutthesupportavailable,andbemoreinvolvedindecisionsabouttheirsupportandinthedevelopmentoflocalservices,whilethosewithmorecomplexneedswillhavegreatercontrolovertheirsupportthroughpersonalbudgets.

1.43 InMarch2015,DfEpublishedaframeworkforSEND22accountabilitythatprovidesthestructureforimprovingoutcomesandexperiencesforchildren,youngpeopleandtheirfamilies.Thenewframeworkwillshowhowthesystemisperforming,holdpartnerstoaccountandsupportselfimprovement.ThisincludestheOfficeforStandardsinEducation,Children’sServicesandSkills(Ofsted)and

theCareQualityCommission(CQC)independentinspectionsoflocalareas’effectivenessinfulfillingtheirnewduties.

1.44 AnupdateonworkinthisareawaspresentedtotheAutismProgrammeBoardatitsMarch2015meeting[Think Autism

Action 23].

22. DepartmentforEducation(March2015).Special Educational Needs and Disability: Supporting local and

national accountability.Availableat:www.gov.uk/government/uploads/system/uploads/attachment_data/

file/416347/Accountability_Publication.pdf

http://www.gov.uk/government/uploads/system/uploads/attachment_data/file/416347/Accountability_Publication.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/416347/Accountability_Publication.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/416347/Accountability_Publication.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/416347/Accountability_Publication.pdf


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Theviewsofchildrenandyoung

people

1.45 TheActplacesmuchgreateremphasisonlocalauthoritiestakingaccountoftheviews,wishesandfeelingsofchildrenandyoungpeople,includingthosewithautism,andparentswhencarryingouttheirSENDduties.

Betterinformationandadvice

1.46 Localauthoritieshavetoprovide

informationforparentsandyoungpeoplethroughalocalofferontheeducation,health,careandotherservicesthatareavailablelocally.Children,youngpeopleandparentsmustbeconsultedbylocalauthoritieswhendevelopingthelocalofferandthisisanopportunitytohighlighttheneedfordevelopmentinlocalservices,includinglocalautismservices.

1.47 Youngpeoplewithautismandtheirparentswillbebetterinformedabouttheoptionsavailabletothem.Thelocaloffermustincludeadviceandinformationtohelpyoungpeoplemakethetransitionfromschoolandfrompost16provisiontoadultlife,aboutindependentliving,andthearrangementsforsupportingyoungpeoplemovingfromchildtoadultsocialcareservices.

1.48 UndergrantfundingfromDfE,NationalAutisticSocietyhasworkedwithyoungpeopleandlocalauthoritiestoensurethatthevoiceofyoungpeoplewithautismisheardinthedevelopmentoflocaloffersandithaspublishedLocal Voices,Local Choices,whichgiveslocalauthoritiesguidanceoninvolvingyoungpeoplewithautismindevelopingtheirlocaloffers23

[Think Autism Action 6].

1.49 Everylocalauthorityhasadutytoprovideimpartialinformation,adviceandsupportforchildren,youngpeopleandtheir

parents.TheGovernmentisalsoinvesting£30m(2014–2016)toprovideindependentsupporterswhocansupportparentsandyoungpeoplewitheducation,healthandcare(EHC)plans,needsassessmentsandplans,includingthetransitionfromlearningdifficultyassessments(LDAs)andstatements.Independentsupportersexplainhowtheprocessworks,includingthelegalrequirements,andhowfamiliesareableto

engagewithit,andthenhelpthemtoengage.

1.50 Thereisanindependentsupportersserviceineverylocalauthorityarea.AnongoingsurveycommissionedbytheCouncilforDisabledChildren,basedonthefirst900responsesfromparentsandyoungpeople,foundthat90%felttheworkwithindependentsupporterswasveryorextremelyuseful87%sayingthesupport

theyreceivedhadapositiveimpact.In2015/16,independentsupportersservicesanticipatedprovidingsupporttomorethan35,000families.

Education,healthandcareplans

1.51 AkeychangewithintheActisthatitreplacesSENDstatementsandLearningDifficultyAssessments(LDAs)withmorecoordinatedEHCplansforchildrenandyoungpeopleaged0–25withthemostcomplexneeds.EHCplansaredrawnupfollowingamoreparticipativeandcoordinatedassessmentthantheassessmentsforSENDstatementsandLDAs.Theyaremorepersoncentred,reflectingthewishesandaspirationsofthechildrenandyoungpeoplethemselves.

23. NationalAutisticSociety(2014).LocalVoices,LocalChoices:Aguidetoconsultingyoungpeoplewithautism

onyourlocaloffer.Availableat:www.autism.org.uk/~/media/NAS/eCommerce/GM/LocalVoicesLocal

Choices.ashx

http://www.autism.org.uk/~/media/NAS/eCommerce/G-M/Local%20Voices%20Local%20Choices.ashxhttp://www.autism.org.uk/~/media/NAS/eCommerce/G-M/Local%20Voices%20Local%20Choices.ashxhttp://www.autism.org.uk/~/media/NAS/eCommerce/G-M/Local%20Voices%20Local%20Choices.ashxhttp://www.autism.org.uk/~/media/NAS/eCommerce/G-M/Local%20Voices%20Local%20Choices.ashx


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1.52 AtJanuary2015,60%ofchildrenidentifiedbyschoolsandlocalauthoritieswhoseprimaryneedwasanautistic

spectrumdisorderhadSENDstatementsorEHCplans,withextrasupportbeingarrangedbythelocalauthority.Thisisahigherpercentagethanformostothertypesofneed.DfEexpectsthatnochildrenandyoungpeoplewithstatementsofSENDwilllosetheirstatementandnothaveitreplacedbyanEHCplanjustbecausethesystemischanging.Itisexpectedthatthosewhowouldhavecontinuedtohaveastatement

undertheoldsystemwillbetransferredtoEHCplansfollowingatransferreview.InfutureitisexpectedthatmanychildrenandyoungpeoplewithautismwillbenefitfromtheextraandmorecoordinatedsupportthatcomeswithEHCplans.

Childrenandyoungpeoplewith

autismwithoutSENDstatements/

EHCplans

1.53 SupportforthosewithautismbutwithoutEHCplanswillalsobeimprovingunderthenewarrangements.TheSpecialEducational Needs and Disability Code ofPractice: 0 to 25 years,thestatutoryguidancethataccompaniesthenewlegislation24setsoutclearerguidanceonidentifyingchildrenandyoungpeople’s

needs.

1.54 Theguidancemakesitclearthatchildrenwithautismcanhavedifficultiesacrossallfourmainareasofneed:

• communicationandinteraction;

• cognitionandlearning;

• social,emotionalandmentalhealthdifficulties;

• sensoryand/orphysicalneeds.1.55 Theautismstatutoryguidancehighlightsthatlocalauthorities,NHSbodiesandNHSFoundationTrustsneedtorecognisethatnotallyoungpeoplewithautismwillhaveEHCplans.Receivingsupportinmakingthetransitiontoadulthood,andaccessingappropriateservicesasanadult,shouldnotbedependentonhavinganEHCplan.

1.56

Underthecareandsupportstatutoryguidance,issuedundertheCare

Act,25localauthoritiesshouldconsiderhowtheycanidentifyyoungpeoplewhoarenotreceivingchildren’sservicesandarelikelytohavecareandsupportneedsasadults.

Theguidanceidentifiesyoungpeoplewithautismwhoseneedshavebeenlargelymetbytheireducationalinstitutionasanexample.

Jointcommissioningandworking

1.57 Localauthoritiesarerequiredtojointlycommission,withhealthbodies,servicesforchildrenandyoungpeoplewithSENDandtointegrateservicestoimproveoutcomes.Jointcommissioningarrangementswillbuild

onlocalJSNAsandbeakeypartoflocalhealthandwellbeingstrategies.TheNHSEnglandMandatehasaspecificobjectiveonchildrenandyoungpeoplewithSEND,andhealthbodiesmusthaveregardtotheSpecial Educational Needs and DisabilityCode of Practice.AseparateguideontheSENDreformshasbeenproducedforhealthandwellbeingboards.Childrenwith

24.

Special Educational Needs and Disability Code of Practice: 0 to 25 years (January2015).Availableat:

www.gov.uk/government/publications/sendcodeofpractice0to25

25. Care and Support Statutory Guidance: Issued under the Care Act 2014(October2014).Availableat:

www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_

Act_Book.pdf

http://www.gov.uk/government/publications/send-code-of-practice-0-to-25http://www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_Act_Book.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_Act_Book.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_Act_Book.pdfhttp://www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_Act_Book.pdfhttp://www.gov.uk/government/publications/send-code-of-practice-0-to-25


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autismoftenrequiremultiagencyassessmentandintervention,andthereformsstrengthenthis.Alreadythereis

evidenceofsomelocalauthoritieshavingdevelopednewintegratedassessment

pathwaysforchildrenwithautism,forinstanceinDoncaster,StHelens,ManchesterandLeicestershire

(http://www.leics.gov.uk/autuism_spectrum_disorder_pathway.pdf)

Case study: an effective multi-agency assessment pathway in Doncaster

In2011DoncasterCCGidentifiedsomerealconcernsabouttheautismpathwayintheirarea,withover400childrenandyoungpeoplewaitinguptotwoyearsforanassessment.Totacklethisproblem,theCCGappointedaleadcommissioner,whilepartneragenciesagreedtosetupasteeringgroupwithhighlevelrepresentation,includingconsultants,psychologists,parentsandeducationandearlyyears

professionalswhobroughtawealthofexperiencetothegroup. ThesteeringgroupworkedtogethertolookatsolutionsbasedaroundNICEguidanceandinputfromstakeholders,inparticularparentsandcarers.Itexploredfamilyexperiencesindetailandidentifiedwhatsupportfamilieswanted.Fromthesediscussionsthethemesthatemergedweretheimportanceofearlyidentification,servicestalkingtoeachotherandpostdiagnosissupport.Familiesexplainedthatsupportfromprofessionalswhocouldofferrealcopingmechanismstohelpbuildtheirresiliencewasoftenthemosthelpfulintervention.

Asaresultofthisworkwithfamiliesandbetweenprofessionals,fromAugust2014a

newNICEcompliantautismpathwayhasbeeninplacewhichsignificantlyincreasescapacityandexpertisefromarangeofpartners,includingconsultants,speechandlanguagetherapists,clinicalpsychologists,educationalpsychologistsandearlyyearsprofessionals.Thiscoreteamworkstogethertocarryoutacomprehensiveassessmentofeachchildoryoungperson.

Thepostdiagnosislandscapeisalsomuchimproved.Familiesareabletoaccesssupportdirectlyfromhighlyskilledfamilypractitioners,anoutreacheducationteam,coordinatedparentprogrammes,increasedspecialistnurseryprovision,ashortbreaksserviceandanintegratedChildrenwithDisabilitiesTeam.Mostimportantly,thereisacommitmenttoembedtheseservicessotheyaresustainableinthe

longerterm.

ThesteeringgrouphasnowevolvedintoDoncaster’sAutismStrategyGroupandwillcontinuetooverseetheseservices.ParentsandcarersarefundamentaltothisgroupandithasbeenarealdriveringettingtowhereDoncasterisnowwiththeautismpathway,whichmeanstherearenolongeranychildrenyoungerthan5waitingforanautismassessmentandthewaitinglistforthoseagedover5hasbeencutbytwothirds.DoncasterCCGisconfidentthat,fromMay2016,allchildrenandyoungpeoplewillhaveadiagnosiswithin18weeksofreferral–aremarkableachievementconsideringthestartingpointin2011.

Feedbackfromparentsandcarerswhohavebeenthroughthenewpathwayisextremelypositiveacrossallservices,andistheresultofthecommitmentanddedicationofmanystakeholders.


http://www.leics.gov.uk/autism_spectrum_disorder_pathway.pdfhttp://www.leics.gov.uk/autism_spectrum_disorder_pathway.pdfhttp://www.leics.gov.uk/autism_spectrum_disorder_pathway.pdf


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Addressingtheadversarialnature

ofthesystem

1.58 OneofthedifficultieswiththeformerSENDframeworkwasthatparentsfelttheyhadtofightfortherightsupportfortheirchildren,toooftenhavingtoregisterappealsattheFirsttierTribunal(SEND).Ofthe3,147SENDappealsregisteredatthe

Tribunalin2014/15,1,094(nearly35%)wereinrelationtochildrenwithautism.

Thiswasthelargestnumberforanyonetypeofneed.

1.59 Inordertoaddresstheadversarialnatureoftheformersystem,the2014ChildrenandFamiliesActandtheCodeofPracticeencouragecloserworkingbetweenparents,youngpeopleandlocalauthorities.Togetherwiththeinformation,adviceandguidanceservicesforparentsandyoungpeople,theseprovisionsshouldhelptoavoidandreducedisputes

betweenyoungpeople,parentsandlocalauthorities.

1.60 Thelegislationalsomaintainsthedutyonlocalauthoritiestohavedisagreementresolutionservicesavailableandintroducesamediationstageinthe

Tribunalappealprocess.ParentsandyoungpeoplewhoareintendingtoappealtotheTribunalnowhavetocontactan

independentmediationadviserandsaywhethertheywanttogotomediationbeforeappealingtotheTribunal.Thelocalauthorityhastoattendthemediationandthisprovidestheopportunityfordisputestoberesolvedearlier.

1.61 AjointreviewofarrangementsfordisagreementresolutionunderthenewSENDsystemisunderwaybyDfEand

MoJ.Thisincludestheoperationofdisagreementresolutionandmediationservices,theimpactofEHCplansin

promotingearlyagreement,andhealthandsocialcareavenuesforcomplaints.

ThereisalsoaSENDTribunalpilot,which

extendsTribunalpowerstomakerecommendationsonhealthandsocialcareissuesaswellaseducationalones.MinistersarerequiredtoreportbacktoParliamentfollowingthereview,by31March2017.

Schoolandfurthereducation

legislationjoinedup

1.62 TheChildrenandFamiliesActhasendedthedividebetweenthelegislationwhichappliedtochildrenwithSENDinschoolsandthosewithlearningdifficultiesanddisabilitiesinfurthereducation(FE),whichtoooftenledtoyoungpeople‘fallingoffacliffedge’at16.UndertheActthereisnowacoherent0–25yearssystem,bringingparityofrightsforthoseatschool

andatcollege.Therewillalsobecontinuityofsupportbeyond18andupto25forayoungpersoniftheyneedittoachievetheirdesirededucationandtrainingoutcomesandtohelpthemprepareforadulthood.EHCplanswillprovideamuchgreaterfocusontheselongtermoutcomes,whichwillbeidentifiedthroughdiscussionbetweentheyoungpeopleandtheotherpartiesinvolved.

1.63 TheActplacesFEcollegesundernewduties,includingthedutyto‘use[their]bestendeavours’tosecurethespecialeducationalprovisionthatallyoungpeopleneed,notjustthosewithEHCplans.Thisisasignificantareaofthereformsforthoseapproachingthetransitiontoadulthood.FEcollegesmusthaveregardtotheCodeofPracticeandcooperatewithlocal

authorities.

1.64 Chapter7oftheCodeofPracticeisdevotedtotheFEsector,andsetsoutwhat


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FEprovidersshouldbedeliveringforyoungpeoplewithSEND,includingtheexpectationthattheywillbeproviding

tailoredandstretchingstudyprogrammesdesignedtohelpprepareyoungpeopleforadulthood.Fundingforlearnersaged16–18inFEwithspecialeducationalneedsordisabilities(andthoseuptoage25iftheyhaveanLDA/EHCplan)isprovidedbyDfEthroughtheEducationFunding

Agency.

1.65 DfEisworkingcloselywiththe

sectortoprovidesupportonimplementingthereforms,producingaguidetotheCodetohelpthesectorprepareforimplementation,runningongoingworkshopsforcollegesandlocalauthoritiesonEHCplansandhowgoodstudyprogrammescanhelpyoungpeopleachievetheoutcomesintheirEHCplans,andrunningaSENFEImplementationGrouptoaddressissues.

1.66 FEcollegesandothertrainingprovidersacrossEnglandhavethefreedomtorespondtotheneedsoflearnersintheirlocalcommunities.ManyhavedevelopedinnovativewaysofrespondingtotheneedsoflearnerswithSENDandareworkingwithawiderangeofpartners.

Provisionforthe19years+age

groupwithoutplans

1.67 EducationprovidersarerequiredundertheEqualityAct201026toprovidereasonableadjustmentsforlearnerswithlearningdifficultiesand/ordisabilities,and

theEqualityActFurtherandHigherEducationproviders’guidance27includesawiderangeofexamplesofwhatmight

constitutereasonableadjustmentsinFE. TheDepartmentforBusiness,InnovationandSkills(BIS)provideslearningsupportfundingtocollegesandtrainingprovidersthroughtheSkillsFundingAgency.Thisistohelpthemmeettheadditionalneedsoflearnerswithlearningdifficultiesand/ordisabilitieswhoareaged19oroverandwhodonothaveanLDAorEHCplan.

Thisincludesthoseonatraineeshipor

apprenticeship,sothattheycanparticipatefullyineducationandtraining.ThisfundingalsohelpsproviderstomeetthecostofreasonableadjustmentsassetoutintheEqualityAct2010.BIShavealsofundedDisabilityRightsUK 28toworkwithkeyorganisationstoproduceanewbestpracticetoolkit,bringingtogetherandaugmentinggoodpracticeresourcesforcollegesonsupportfordisabledlearners,

includingthosewithautism.

1.68 TheOfficeofQualificationsandExaminationsRegulation(Ofqual)placesGeneralConditionsofRecognitionontheawardingorganisationstheyregulateinrelationtoreasonableadjustmentssoastoenableadisabledlearnertodemonstratehisorherknowledge,skillsandunderstandingtothelevelsofattainment

required;thesearepublished.NASisinvolvedwithongoingworkwithOfqualtoconsiderhowexampaperscanbedesignedtobemoreaccessibletoautisticstudents.

26. See:www.legislation.gov.uk/ukpga/2010/15/contents/enacted/data.htm

27.

See:www.equalityhumanrights.com/adviceandguidance/furtherandhighereducationprovidersguidance

28. See:www.disabilityrightsuk.org

http://www.legislation.gov.uk/ukpga/2010/15/contents/enacted/data.htmhttp://www.equalityhumanrights.com/advice-and-guidance/further-and-higher-education-providers-guidancehttp://www.disabilityrightsuk.org/http://www.disabilityrightsuk.org/http://www.equalityhumanrights.com/advice-and-guidance/further-and-higher-education-providers-guidancehttp://www.legislation.gov.uk/ukpga/2010/15/contents/enacted/data.htm


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Case study: Askham Bryan College’s autism champions

AskhamBryanCollegehasexperiencedasignificantincreaseinthenumberof

studentswithautism.Overafiveyearperiod,thenumberofyoungpeoplewithautismattendingthecollegetrebled,from31in2008/09toapproximately90in2013/14.Thecollegealreadyhadadedicatedautismcoordinatorinplace,butshewasstrugglingtomeetthedemandposedbytheseincreasingnumbers.Inresponse,thecollegedecidedtocreatean‘autismchampion’foreachdepartment.Theaimwastoincreaselearners’accesstostafftrainedinworkingwithyoungpeoplewithautism.

Achievementandprogressiondatasuggestedthat,whilemanyyoungpeoplewithautismwereabletomovefromentryleveltolevelone,andinsomecasesfromlevelonetoleveltwo,progressionfromleveltwotolevelthreewaslesseffective.Asa

result,thecollegeprioritisedtrainingforstaffworkingatlevelstwoandthree.

Bytraininganautismchampionineachdepartment,thecollegeensuredthatyoungpeoplewithautismcouldaccessspecialistsupportfromamemberofstaffwithanunderstandingoftheirautismandthesubjectmatter,expectations,deliverystyleandexaminationrequirementsoftheircourse.Theautismchampionwaswellplacedtoprovidesupportandguidancetoindividuallearnersandtheirtutorsaboutappropriateadjustments,includingadaptationsandstrategiesforsupport.Theautismchampionisthefirstpointofcontactforalearnerwithautism;thepersontheycangotoiftheyarehavinganyproblems.Theautismchampionwillliaisewithdepartmentalstaffand,

whereadditionalsupportisrequired,refertheyoungpersontotheautismcoordinator.

Therearecurrently20autismchampionsacrossthecollege,allofwhomhaveundertakenaspecialistleveltwoaccreditedqualification.Inrollingoutthetraining,thecollegeprioritisedthedepartmentswhichhadthehighestnumbersofyoungpeoplewithautism.Italsotrainedtheleveltwocoursemanagerandaseniormanagerasautismchampions.Theleveltwocoursemanagerhasanoverviewofallleveltwoprovision.Assuch,sheiswellplacedtounderstandtheimplicationsofleveltwocourseentryrequirements,methodsofassessmentandaccreditation.Beingtrainedasanautismchampionhasenabledherbothtoidentifypotentialbarriersforyoung

peoplewithautismandworkwithdepartmentstafftodevelopandimplementsolutionstosupportprogressionforindividuallearnersandacrosssubjectdisciplines.

Trainingaseniormanagerasanautismchampionhasalsoprovedveryeffective.Learningaboutautismhasenabledhertobetterunderstandthereasonsforanychallengingbehavioursshownbyyoungpeoplewithautism,andtomakeanappropriatejudgementaboutthebestwaystoaddressthem.Inmakingthese

judgements,thecollegecanalsodrawontherelevantautismchampion,someonewhoknowstheindividualconcernedandhasanunderstandingofautismandthewayitaffectsthem.Thisapproachhasnotonlyledtoasignificantreductioninthe

numberofyoungpeoplewithautismbeingsubjecttothecollege’sdisciplinaryprocess,butithasalsoenabledthecollegetoputinplacemoreappropriate


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strategiestoeffectivelymanagebehaviourswhichchallenge–and,insomecases,toeliminatethemaltogether.

Theautismchampionshaveprovedsoeffectivethatthecollegeaimstotrainanother20staff,andtoextendtheroletootherssuchasreceptionists,librariansandcateringstaff.Moreover,theadaptationsmadetothecollegecurriculumandenvironmentasaresultoftheautismchampionshavesignificantlyreducedthelevelsofanxietyandstressexperiencedbysomeoftheyoungpeoplewithautism,enablingthemtoaccesslearningmoreeffectively.

Case study: learner with autism

Miss E. Burgess, Head of Learning Support at Heathfield Community College,talks about the college’s facility for students with high functioning autism.

‘WhenStevejoinedusinyear9,wewerealmostsixmonthsintoourfirstyearasaspecialistautisticspectrumconditionfacility.Whilewehadstaffing,enthusiasmandmanyplansinplace,wewerestilloftenworkingona“battendownthehatchesandgetthroughtheday”basis.Ourstrategywasbornoutofarecognitionofoursuccesswithchallengingstudentsandahighlyinclusiveethos,andwehadtheclearvision

andstrategytoensurethatourfacilitywouldprovideexpertise,awarenessandaflexibleenvironmentsothatstudentswhomightotherwisebecateredforinspecialistprovisioncouldattendandbeultimatelysuccessfulinamainstreamenvironment.

‘Stevewastheepitomeofthis.Havingbeenunsuccessfulinhisprevioussecondarysetting,hehadspentthebestpartofayearoutofeducationandwasdescribedasacademicallyablebutlazyandaggressive.However,whatwewereinfactpresentedwithwasaboywhowassohighlyanxiousthathecouldnotbearcomingintotheschoolbuildingifhewasinsightofothersandwhowincedeverytimethebellrang.Westartedwithaflexibletimetable,whichbuiltupoverthecourseofsixweeksfrom

onehouradaytothefullweekinschool,eachdayholdingourbreathincaseitallwentterriblywrongandherefusedtocomein,butheneverdid.Itwasnotallplainsailing,ofcourse.Therewereanumberofincidentswherethestressandanxietyofabusyschooltooktheirtoll–severalmockexampapersrippedintopiecesandanunmovablegardentablewhichdidnotliveuptoitsdescriptionwhenhemanagedtoupendit.Whentheseincidentsoccurredwewerefortunatethattheleadershipatthecollegesharedourflexibleapproachandthatprocedurescouldbeestablishedtoaccommodatesomeonewhosebehaviourwasclearlyaresultofanxiety,sensoryissuesandveryrealdifficultieswithsocialunderstanding.

‘Steveisnolongeratourcollege–havingachievedGCSEsandALevelsheisnowlivingandworkingabroadwithalongtermpartner.Sinceheleftwe’vehadmanyother“Steves”inourfacility,eachjustasuniquebutallwitharangeofcomplexneeds.In2010wewereproudtobeawardedaccreditationbyNAS.Ourcollege


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provisionhasdevelopedthroughtheseexperiencesand,whilewestillhavedayswhenitfeelslikewearefirefighting,inrealitywehavewellestablishedprovisionthat

startswitheverymemberofthecollegestaffbeingawareofautisticneedsandendswithindividualpackagesforstudents,whereverpossible.Wecontinuetopromoteaninclusivephilosophyandmanyofthosewhoasktovisitthefacilityaremetwiththereplythatthereisreallynothingphysicaltoseehere.Thereisnoseparateunitwithstudentsbeingtaughtoutsidetheclassroom.Insteadwehavetheopportunityforwithdrawal,ifneeded,andteachingstaffwhoareequippedtomeettheneedsofthemostanxiousorexceptional.Wefeelthatthisisthegreatestillustrationofwhatweareaimingtoachieve–aparityofschoolexperienceforallstudents,autisticorotherwise,wherethecurriculumandschoolenvironmentareaccessibletoallandwherereasonableadjustmentsaremadeonanindividualbasisratherthana“one

adjustmentfitsall”model.

‘Forourpartwewillcontinuetowelcomethe“Steves”ofthisworldtoourcollege.Weareprettysurethereareafewinthisyear’scohort,withwhomwelookforwardtoworking.Andsowerecommencethenecessarycycleofstaffawarenesstraining,communication,preparationandwinningtheheartsandmindsofstudentsandparents,whoareunderstandablywaryofthemainstreamsystem.’

Case study: Brain in Hand

BraininHandisoneformofanassistivetechnologyforpeopleontheautismspectrum.NASranasmalltrialofBraininHandaspartofitssupportforhighereducation(HE)studentsinLondon,fundedbyDHasanAutismInnovationFundproject.ThirtyorganisationsintheUKhavenowintroducedthesystemintotheirservices,includingeightlocalauthoritysocialservicesteams,autismserviceprovidersandschoolsandcolleges.

MoreandmorepeopleontheautismspectrumareenteringHE.TheHigher

EducationStatisticalAgencyrecordedover2,400studentswithautismspectrumconditionsinUKuniversitiesin2013/14,a300%riseinthreeyears.Thesestudentsrequireappropriatesupportandadjustmentstoreallythrive.Foryoungadults,movingfromfurthereducationtouniversitycanbeoverwhelmingandworrying.

Theresultswereencouraging:overall,53%ofstudentsratedtheimpactofBraininHandaspositiveorextremelypositive,whilethesamenumberfeltmoreabletoimplementstrategiesandhalfreportedfeelingmoreconfident.

BraininHandisawebbasedmobileassistivetechnology.Itusesasecure,cloud

basedservicethatsynchroniseswithasmartphoneortablet,givingstudentsaccesstotheircopingstrategieswhentheyneedthem,andallowingthemtoreporttheirmoodandfeelings.


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Thekeyfeaturesare:

• Adiaryfeaturecreatesastructuredroutineand‘recipes’fordifficulttoremembertasks.

• Userscanbuildpreplannedcopingstrategiesintothesystemtohelpthemdealwithdifficultsituations.Thesestrategiesareinstantlyaccessibleinasimpleformatontheirsmartphone.

• Atrafficlightsystemalertsafacilitatorwhenauserreportshighanxiety,enablingatimelyintervention.

• Dataisrecordedinrealtimeanddisplayedonatimeline,allowingusersandsupportteammemberstotrackandunderstandsituationsorissues.

BraininHandisnowavailabletostudentsontheautismspectrumatuniversitiesacrosstheUKthroughDisabledStudents’Allowances,supportedbyNASwhoprovidefacilitationinresponsetothetrafficlightalerts.

YoucangetmoreinformationandcasestudiesfromMattDaniel:[email protected]

Provisionforstudentsinhigher

education1.69 Aspreviouslyindicated,HEprovidershavespecificlegaldutiesundertheEquality

Act2010toprovidereasonableadjustmentsfordisabledstudents.InadditiontothesupportavailablethroughHEproviders,theGovernmentalsoprovidesindividualsupportfordisabledstudentsintheformofDisabledStudents’Allowances.Disabled

Students’Allowancesarenonrepayablegrantsthatarenotmeanstestedandareavailableforarangeofsupport,includingnonmedicalhelp(i.e.humansupportsuchasnotetaking),fundingforitemsofspecialistequipmentandassistivetechnology,andaccommodation.StudentswishingtoapplyforDisabledStudents’

Allowanceswillundergoastudyneedsassessment,duringwhichtheirparticular

needswillbediscussedwithinthecontextoftheircourseofstudy.StudentswithanEHCplanmayaskthelocalauthoritytoprovideacopyoftheEHCplantotheDisabled

Students’Allowancesstudyassessorto

helpinformdiscussions,iftheywish.

1.70 Forundergraduatestudentsstudyingfulltimethemaximumallowancesare£20,725annuallyfornonmedicalhelpandupto£5,212forspecialistequipment.Fundingisalsoavailablefordisabledstudentsstudyingparttimeandatpostgraduatelevel.BIShasbeenworkingwithexpertsinthesectoronhowtomake

applyingforDisabledStudents’Allowanceseasierforstudentswithautism,andsomechangestoguidancedocumentsareunderway.

1.71 TheGovernmenthasrecentlyconsultedonhowDisabledStudents’

Allowanceswillbeprovidedinthefuture,andaresponsewillbepublishedinduecourse.Theconsultationconsideredhow

institutionsmightworktowardsamoreconsistent,moreinclusivelearningenvironmentforallstudents,includingdisabledstudents.

http://www.braininhand.co.uk/http://www.braininhand.co.uk/


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Guidanceonthetransitionto

adulthoodandemployment

1.72 AnewchapterintheSENDCodeofPracticeisdevotedtopreparingforadulthood,givingadviceonplanningforthetransitiontoadulthoodfromanearlyageandfocusingonaspirationsandoutcomestoensurethattherearepathwaysintoemployment,independentliving,participationinsocietyandgoodhealth.TheNationalDevelopmentTeamforInclusionisbeingfundedbyDfEtosupport

localareasindevelopingtheirapproachtopreparationforadulthood.

Supportforworkbasedlearning

intoemployment

1.73 Weknowthattoomanyadultswithautismarenotinemployment,andthat79%ofthosewithautismonoutofwork

benefitswanttowork.ThismeansthattheincreasingemphasisonpathwaystoemploymentforyoungpeoplewithSENDshouldbeparticularlybeneficialforthosewithautism.Workbasedlearningisavailablethroughpersonalisedstudyprogrammesforallyoungpeopleaged16–19,oruptoage25iftheyoungpersonhasanEHCplan.

1.74 Traineeshipsandsupportedinternshipsaretwostudyprogrammeswhicharespecificallydesignedtoprepareyoungpeopleforemployment.

Traineeshipsareamainstreamstudyprogrammeforthosewhoarealmostreadytostartpaidemploymentoranapprenticeship.Supportedinternshipsenableyoungpeopleaged16–24withastatementofSEND,anLDAoranEHC

plantoachievesustainablepaidemploymentbyequippingthemwiththeskillstheyneedforwork,throughlearning

intheworkplace.Theyarebasedprimarilyatanemployer’spremise

Documents

Autism Progress Report