Good practice in supporting children and young people with autism ...

ContentsTerminology 4Purpose 5Background 6Summary of recommendations 7The business case 8Strategic planning 12Training 14Continuum of education provision 16Further education 18Access to short breaks 19Mental health: access to CAMHS 20Multi-agency joint working 22Outreach 24Supporting carers 26Working with carers 27Public and third sector partnership working 28Regional partnerships 29Person-centred planning 30Transitions 31Comprehensive integrated provision 32Published by The National Autistic Society 2011Designed by Perchemail: info@perchhere.co.ukPrinted by Newnorth Print LtdCover photo Stuart ThomasCommissioning 34Conclusion 35Summary of government initiatives and policy drivers 36References 412 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 3

TerminologyPurposeAutismAutism is a lifelong developmental disability thataffects the way a person communicates with, andrelates to, people around them. One in 100 people inthe UK has autism. It is estimated that there are morethan 20,000 children and young people with autism inthe south west of England alone.People with autism share three areas of difficulty:• social communication (eg problems using andunderstanding verbal and non-verbal language)• social interaction (eg difficulties recognising andunderstanding emotional states and resultingdifficulties in understanding intentions of others andmanaging their own feelings)• social imagination (eg difficulties coping with newsituations or changes of routine).Autism is a spectrum condition. Although manypeople with autism can lead relatively independentlives, others require significant support throughout theirlifetime.This report uses the term autism to describe all autismspectrum disorders, including Kanner autism andAsperger syndrome.Complex needsThe common unifying feature of children and youngpeople with complex needs is their vulnerability(Carpenter 2010). Many have co-existing conditionsand additional mental health needs. We are seeingan increase in numbers of children and young peoplewith complex needs – many of whom have autism.Local provisionThe report Aiming Higher for Disabled Children (DfES2007) recommended that primary school pupils andthose with special educational needs (SEN) shouldbe educated within 45 minutes of the family home.However, everyone should be entitled to supportwithin their local community. Some people may notbe able to cope with a 45-minute journey to and fromschool every day.The Regional Improvement and Efficiency Partnership(RIEP) provided funding for this project to provide allchildren and young people directorates in the southwest with guidance and examples of good practiceto improve local provision and long-term outcomesfor children and young people with autism andcomplex needs. The guidance aims to support localauthorities to:• improve local provision• reduce reliance on children and young peoplebeing placed a long way from the family home• improve long term outcomes for those with themost severe and complex needs• achieve significant cost savings.The guidance identifies characteristics of good localprovision and includes examples of good practice,early intervention schemes and local support, andoutlines the business case for developing more localand more specialist provision.The steering group involved representation from keystakeholders including the Department for Education,the Government Office South West, the South WestDevelopment Centre, the Autism Education Trust,the RIEP, the Young People’s Learning Agency, TheNational Autistic Society, South West Autism Network,and representatives from children and young peopledirectorates in local authorities and primary caretrusts.4 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 5

BackgroundSummary of recommendationsAutism is a lifelong developmental disability thataffects one in 100 people in the UK. It is estimatedthat there are more than 20,000 children and youngpeople with autism in the south west alone and thenumber of young people recognised as having thecondition is expected to increase significantly overthe next decade. Provision in local mainstreamservices is slowly improving. However there aresignificant concerns about the long-term outcomesfor those with the most severe and complex needs.Many children and young people with autismcan present challenging behaviour, which resultsin high rates of exclusion and difficulty accessingprovision outside the school day. This can putconsiderable strain on families and often results incrisis situations requiring specialist provision. There aresignificant concerns about the way such servicesare commissioned. Frequently placements arecommissioned without setting clear outcomes andas a result placements are often inappropriateand a long way from the family home. This can bedetrimental to the young person’s well being. Onceplaced in out of area provision many of the localsupport mechanisms fall away, making it very difficultto reintegrate the young person back into authority.For many this results in lifelong placements a long wayfrom the family home with little choice or control overtheir lives and poor long-term outcomes.It is estimated that approximately 400 children andyoung people with autism from the south west arecurrently placed in independent non-maintainedspecial schools (INMSSs) at a cost of over £35 millionper year. Around 5% of children and young peoplewith a diagnosis of autism and a statement of SENare placed in INMSSs making up over 25% of INMSSplacements. The lifetime costs of supporting suchindividuals with autism are often in excess of £5 millionper person. There is a desperate need to improveoutcomes and value for money for those with thegreatest needs associated with autism.The needs of many children and young peoplewith autism who are placed in INMSSs could bemet locally through the development of a moreappropriate continuum of local provision. Localspecial schools need to adapt and evolve so theyare suitable for those with more severe and complexneeds. There is a need for better collaborative workingprotocols across education, social care, health andthe voluntary sector in order to identify those most atrisk, to intervene early and to prevent reliance on suchplacements.Much of the challenging behaviour that ultimatelycauses out-of-area placements is the result ofplacing the young person in an inappropriateenvironment and a lack of understanding of theneeds of individuals with autism. There is a need fora more flexible model where specialists with highlevels of autism expertise are available to provideintensive additional and personalised support to thosewith more severe and complex needs in order toprevent family or placement breakdown. In additionthere is a need for more intelligent and joined-upcommissioning across agencies that identifies supportand placements according to set outcomes to meetthe individual’s needs.The United Nations Convention on the Rights of theChild states that health is the basis for a good qualityof life and mental health is of overriding importancein this. Yet 70% of children and young people withautism have additional mental health difficulties (eganxiety, depression); these are often preventablebut are unrecognised. We are therefore failing manychildren and young people with autism. The projectwill seek to address this by supporting local authoritiesto develop local provision for more children andyoung people with autism and complex needs.• Strategic planning: Make effective use of dataand trends in strategic planning to ensure thereis an appropriate range of provision spanningthe whole spectrum of need in order to reducereliance on INMSSs.• Training: Ensure that multi-tiered autism trainingis available in all agencies in each local area inorder that community professionals can respondappropriately to the needs of young people withautism, reducing the risk of placement breakdown.• Continuum of provision: All local areas shouldensure there is a range of appropriate provisionto respond to the needs of learners across thespectrum, including those with complex needs thatmay challenge traditional services.• Further education: Local areas should ensure thereis appropriate local further education provision forlearners with autism and complex needs to reducecurrent reliance on INMSS placements (30% of whichare in further education institutions).• Short breaks: Local authorities should developappropriate specialist short-break provision,including overnight breaks, for young people withautism and complex needs in order to reducereliance on INMSSs (a majority of such placementsinvolve part-time residential provision).• Mental health: Child and adolescent mental healthservices (CAMHS) should develop more preventativeservices and provide better access to appropriatetherapeutic services for young people with autismand complex needs.• Multi-agency working: Local authorities shouldensure there is effective multi-agency working toenable families to receive integrated targetedsupport which can mirror that offered by INMSSs.• Outreach: Local authorities should develop specialistprovision that can act as the hub of expertise forthe local authority, providing expertise, training andoutreach to other services so they become betterequipped to manage the higher level of needs.• Family support programmes: Local authorities shouldconsider introducing family support programmes such asthose in Bristol to help prevent family breakdown and theneed for more specialist provision.• Input of carers: Children’s trusts should follow theexample of Autism in Mind in Sunderland and inviteparents with children with autism spectrum disorders(ASD) to have an input into strategies for children andyoung people with autism and learners with learningdifficulties or disabilities.• Third sector provision: The public sector shouldconsider using the expertise offered by the third sectorwhen developing specialist provision.• Regional planning: Local authorities in the south westmight consider forming an autism consortium similar tothat in Greater Manchester, which achieves economiesof scale through sub-regional strategic planning.• Person-centred planning: Local authorities shouldpromote more use of person-centred planning to putthe young person and their family at the centre ofthe planning process and support young people toachieve their aspirations.• Transitions: Local authorities should considerdeveloping an adult and transition autism service soyoung people with autism can access appropriatesupport to live effectively in community settings, havetheir needs anticipated and lead more fulfilling lives.• Integrated provision: Local authorities shouldconsider developing a comprehensive integratedautism service, which includes education optionsthrough special schools and a resource baseattached to a mainstream school, social careoptions through extended activities, short breaks andresidential provision, and effective input from health,and outreach and training. Such provision significantlyreduces reliance on INMSS placements.• Commissioning: Local authorities should agree clearoutcomes with providers when commissioning placesfor young people with autism and complex needs. Thismakes it easier for local authorities to demonstrate valuefor money and INMSSs to demonstrate outcomes.6 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 7

The business caseThe number of children and young people beingrecognised as having autism is increasing. In someareas this increase has been over 7% per year. Whilethe number of children and young people with SENremains reasonably constant the proportion of thosewith more complex needs is also increasing (figure 1).Figure 1 Trends in placements for children with BESDand ASDs in the UK, 2002–2007% age of all placements35.0%30.0%25.0%20.0%15.0%10.0%5.0%0.0%2002 2003 2004 2005 2006 200713.9% 18.4% 19.5% 20.7% 22.9% 24.2%20.5% 25.7% 27.1% 29.5% 29.7% 30.8%% age of ASD placements% age of BESD placementsThere are more than 300 children and young peoplewith autism in INMSSs in the south west at a cost ofwell over £35 million per year. This represents over25% of all placements in INMSSs in the south west. Itis worth noting that this proportion varies enormouslyacross the region. Areas that have an effective autismstrategy have much lower rates of children and youngpeople in INMSSs (eg 8% in Devon) than those without(eg 41% in Bristol), which often lack appropriate localprovision for those with autism and complex needs(DfE 2010).Fosse Way School in Bath has developed a highlevel of autism specialism. This has resulted in 30% ofchildren with autism being supported in local specialschools. Often authorities with fewer children andyoung people with autism placed in local specialschools (eg Wiltshire with 8%) have a greater relianceon INMSS placements than those that have more ofthese children in local special schools (eg Wiltshire36%).Only 10% of INMSS special schools are for pupils ofprimary age – 90% are for secondary and post-16students. There is far less need for autism specialistprovision at primary school. However, there clearly isa need for autism specialist provision at secondaryschool and post-16. Nearly one-third (31%) ofINMSS placements are for post-16 students. It is welldocumented that there is a lack of appropriate furthereducation provision for learners with autism; 70% ofpost-16 placements are for residential care. There isclearly a significant need for residential provision forthis age group.A day placement with 1:1 support for children andyoung people with autism in a maintained specialschool costs approximately £33,500 per year inDevon. The leading providers of autism specialistINMSSs in the south west are organisations such asThe National Autistic Society (NAS), Cambian andPriory, whose charges range from £35,000 to about£65,000 per year for a day placement. A majority ofINMSS placements are for young people who requireresidential provision. Table 1 shows the costs perplace for children and young people in a maintainedspecial school in the south west.% of totalplacementsAnnual costper placeDayplacementSource: Ofsted reportsResidential(per week)Residential(per term)43% 14% 24% 19%Residential(52 weeks)

The business caseNotes* The amount of Local Authority Central SpendEquivalent Grant (LACSEG) an academy receives,and the proportion of overall funding it representsfor the academy, varies. The DfE has previouslyindicated that on average local authorities retainaround 15% of school funding, so the LACSEGcould approximate to a similar proportion of thebudget for some schools. With a review of the waythe level of LACSEG is calculated pending, andreductions in local authority funding, it may bethat levels of LACSEG will change. However, thegovernment has announced that current levels ofLACSEG will be reduced by up to a maximum of10% for academies in 2011/12 (SSA Trust 2011). Thisfigure has been calculated at 10% of total costs.** Based on Waltham Forest average SEN travel costsin November 2010.Analysis:• Education costs: Public sector provision issignificantly cheaper than INMSS provision. Thismay be partly because public sector providers areentitled to additional grants and funding schemesthat are not always available to INMSSs.• Care costs: INMSS provision is significantly cheaper,possibly because of economies of scale, which anindividual local authority is unable to achieve.• Health: Public sector costs are slightly cheaper,possibly because of economies of scale, whichan individual INMSS is unable to achieve.• Central costs: Public sector costs are slightlycheaper, possibly because of economies of scale,which local authorities are able to achieve.• Transport: INMSSs are significantly cheaper. Thisis mainly because there is less need for transportbetween services in INMSSs than in local authorities,which fund the SEN transport costs per pupil inINMSS and maintained provision.• Overall costs: INMSSs are only marginally moreexpensive than public sector provision for those withcomplex needs requiring 1:1 support for 52 weeksof the year.It is worth commenting that funding levels for SENspecial schools do not necessarily reflect actualcosts. In addition, it may be that because this is a newprovision in a maintained special school there areadditional start-up costs.It is worth noting that there are considerable variationsin the cost of INMSS placements and many suchplacements cost significantly more than £200,000per year. However, 52-week provision will alwaysbe expensive whether it is offered in INMSSs or bythe maintained sector because of the high level ofpersonalisation and support required.ConclusionsWhile the actual cost of supporting a young personwith complex needs requiring specialist support is onlymarginally cheaper through the public sector than theprivate sector there are considerable long-term benefitsof developing more local in-house provision.First, by having specialist provision locally you havelocal expertise, which can be used to provide trainingand outreach to prevent placements breaking downin the first place. One unitary authority in the southwest currently places about five young people withautism a year in INMSSs. Even if such an approach onlyprevented one such placement a year that would bea reduction of 20% in such placements, resulting inbetter outcomes and value for money.Second, supporting young people locally makes itsignificantly easier to reintegrate them back into lessspecialist provision. It is not uncommon for youngpeople to be placed in specialist settings at short noticeas a result of crisis situations. If they are placed in anappropriate environment and supported by staff withappropriate skills it is often possible to reduce levels ofanxiety and resulting behaviours fairly quickly. The unitaryauthority mentioned above, which on average is fundingINMSS placements for an average of five years, with localprovision might be able to reduce INMSS placementsto an average of three years before the young peoplewere reintegrated into less specialist provision.Table 3 examines the potential long-term impact ofthese measures.Table 3ProvisionNumber ofplacementscommissionedper yearDuration ofplacement(years)While the costs of supporting a young person withautism and complex needs requiring high levels ofsupport remains high, by developing appropriatelocal provision it is possible to reduce the durationand frequency of such placements. This could enablea 50% reduction in overall costs as well as achievingbetter outcomes for young people.Annual costof placementINMSS 5 5 £198,500 £5mPublicsector4 3 £196,600 £2.4mTotal annualcost ofspecialistplacements10 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 11

EXAMPLES OF GOOD PRACTICEStrategic planningThe Audit Commission report Out of AuthorityPlacements for Special Educational Needs (2007)made the following observations:• The needs of many children and young peoplewith complex needs, particularly those with autism,are not currently being met by their local schools.• There is a need for better strategic planning,budget planning and commissioning for childrenand young people with complex needs.• Strategic planning for children with complexneeds is poor and opportunities to provide moreintegrated and cost-effective services through jointworking between education, social care and healthservices are not being maximised.• Where strategic planning is less strong, there hasbeen a lack of strategic action, which has resultedin higher levels of placements in out-of-authorityschools.Where there is a lack of appropriate provision, thereis an increased reliance on INMSS placements, whichin turn leads to a lack of investment in local services.Many local authorities are caught in this sort of viciouscycle.Local authorities need to ensure they havecomprehensive data on the number of children andyoung people with autism and use this intelligenceeffectively to inform the commissioning of services.For example, Surrey has identified that over the lastseven years there has been an 82% increase inthe prevalence of children and young people withautism, and recognised there is a high reliance onINMSS placements. This has enabled Surrey to acceptthe need for special schools to adapt to meet thechanging needs of children and young people withSEN – particularly those with autism and complexneeds. Such intelligence is used to inform localchildren and young people plans and SEN strategies,and ultimately the commissioning of local services.Since the elections in May 2010, ‘local authoritieshave a new role in improving the health andwellbeing of their population as part of a new systemwith localism at its heart and devolved responsibilities,freedoms and funding’ (Healthy Lives, Healthy People,DOH 2010b).The importance of good quality information wasstressed in a DfES report in 2007:Good quality, consistent, and up-to-date informationis essential to the provision of services to all those inneed, including disabled children. Collection andappropriate use of such information facilitates theoperation of mutually aware, child-centred servicesworking together to ensure the best possibleoutcomes for children, and especially for those withadditional needs.Aiming Higher for Disabled Children (DfES 2007)Good practice in strategic planning that takesaccount of data and trends: SomersetSomerset evaluated data for the incidence of ASDwith high needs in the local population; this hasincreased from one in 2002/3 to 25 in 2010, with anexpectation that numbers will continue to rise. Thiswas evaluated with the money given to INMSSs forthe placement of pupils with an ASD and complexneeds. The two data sets were aligned with Somerset’saim to develop local specialist provision, enablingchildren and young people to remain in their localcommunities. Somerset has therefore strategicallydeveloped specialist resourced ASD resource basesto meet local need, and reduce reliance on INMSSs.Revenues for the resource bases are to be met fromthe savings from independent provision. This is part ofa continuum of provision within Somerset to meet theneeds of children and young people with autism. Thecontinuum spans placements in mainstream schoolswith support and staff training, specialist resourcebases attached to a mainstream school, specialschools, and aformentioned small autism specialistprovision.In its strategy for building effective local skills,confidence and SEN provision (Somerset CountyCouncil 2010), Somerset County Council outlinesits autism provision strategy and its strategy fordeveloping specialist provision for autism. A key aimis ‘to develop specialist provision that is resourced tomeet increasingly complex needs and to developstaff expertise to support inclusion’. The strategyrecognises the need to provide for SEN on acontinuum from high to low incidence, and for lowneeds to high needs. The strategy also takes accountof the local authority’s requirement in its strategyto further develop ‘a range of provision to meetneeds locally that minimises the use of out of areaplacements and is impacting positively on outcomesfor children’.The strategy therefore plans to extend ‘maintainedprovision of Somerset to develop local specialistprovision to reduce reliance on independentprovision, enabling children and young peopleto remain in their local communities’. Althoughthere remains a need for independent specialistplacements, there are now only eight of theseplacements, resulting in a significant saving for thelocal authority, and higher numbers of children andyoung people with an ASD remaining in their locality.Contact: Peter Harnett, Autism Strategic Lead,Somerset County CouncilRecommendationMake effective use of data and trends in strategicplanning to ensure there is an appropriate rangeof provision spanning the whole spectrum of needin order to reduce reliance on INMSSs.12 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 13

TrainingChildren on the autism spectrum aredisproportionately affected by exclusions fromschool. According to a 2005 study 27 per centhave been excluded from school, comparedwith 4% of other children. The NAS Make SchoolMake Sense report states that in many cases suchexclusions represented a failure on the part of theireducational setting to provide appropriate supportand training. Exclusions often resulted from a lackof understanding on the part of teachers, learningsupport staff and supervisory staff of the socialand communication impairments experiencedby children on the autism spectrum. The findingwas supported by a 2006 survey of National Unionof Teachers members which showed that 44% ofteachers did not feel confident teaching childrenon the autism spectrum.NAS (2006)Many of the difficulties that young people with autismexperience are the result of poor understanding ofautism in local services. This can result in staff beingunable to meet the needs of the young person,increasing reliance on out-of-authority placements.All those who support people with autism require basicautism training. However, those with complex needsrequire support from community professionals andfrontline staff with a higher level of understanding andexperience in the autism field.Professionals and frontline staff working across socialcare, education and CAMHS require greater expertiseto respond more appropriately to the needs of youngpeople with autism and complex needs. It is essentialthat all such professionals can access good qualityaccredited autism training.The exclusion of pupils with SEN is alarmingly high. Thebehaviour of pupils with an ASD and complex needswhose needs are not understood or met can resultin those pupils being permanently excluded, whichcan be followed by the need to find an alternativeplacement, which can be an INMSS.Good practice in multi-tiered training for peopleworking with children and young people with anASD to ensure knowledge and understanding ofautism across all services: South GloucestershireIn South Gloucestershire, the NAS provided trainingover a year to CAMHS and professionals from allother agencies working with children and youngpeople with an ASD in South Gloucestershire. Theaim of the project was to build the capacity ofCAMHS professionals to meet the needs of childrenand young people with an ASD. Staff on this projectconsulted with a range of CAMHS professionals toidentify specific training areas for development intheir work with children and young people and theirfamilies with a diagnosis of an ASD.Training was offered to CAMHS professionals includingprimary mental health workers, specialist nurses,therapists, psychotherapists, psychiatrists, clinicalpsychologists and social workers. Professionalsfrom other agencies included learning disabilitynurses, social workers, Connexions staff, educationalpsychologists and specialist teachers.The training included an introduction to ASDs, socialcommunication, sensory differences, difficultieswith imagination and flexible thinking, interventions,effective partnership with people with ASDs and theirfamilies, individual perspectives, Asperger syndrome,diagnosis, challenging behaviour, high-risk offendingbehaviour, sexuality and relationships. In addition therewere three interactive workshops which supportedparticipants to share ideas, find solutions, meet needs,support each other and review practice.Feedback from the training was extremely positive.It enabled participants from all agencies to have ashared understanding and knowledge of ASDs, whichhas informed their practice. The following feedbackgives a flavour of how the training has developedprofessional understanding of autism:It’s not just helped me to understand autism, it’shelped me to understand human behaviour andthe fact I must keep being flexible and resourceful.It’s now even better to talk to autistic young peopleabout life and the way they understand their world.I am much more able to let go of what doesn’t workand keep doing what does work. These things soundand look simple, but get so easily forgotten.Contact: Mel Meek, CAMHS,South Gloucestershire CouncilRecommendationEnsure that multi-tiered autism training is availableacross all agencies in each local area in orderthat community professionals can respondappropriately to the need of young people withautism, reducing the risk of placement breakdown.14 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 15

Continuum of education provisionThe Green Paper Support and Aspiration (DfE 2011)outlines opportunities for parents to be consulted andinvolved in selecting their child’s provision. A surveyby the NAS in 2011 suggests a majority of parents ofyoung people with autism would like their child to beeducated in an autism-specific provision. The GreenPaper also sets out the role of the special school asa hub of expertise for local special and mainstreamschools.Autism is a spectrum condition and therefore requiresa continuum of provision. While many young peoplecan cope independently in mainstream schools,others benefit from resource bases attached tomainstream schools, or generic special schools.Those with autism and complex needs need morespecialist provision such as an autism specialist schoolas opposed to a generic special school. Those areasthat have autism-specialist provision often rely less onindependent provision. Having sufficient resources,well-trained staff and well-equipped accommodationin strategically designed autism-specific provisionresults in reduced exclusions. Appropriate staffinglevels, accommodation matched to need and highlevels of training and skills supports pupils to have theirneeds met appropriately.Figure 2 The continuum of education provisionfor children and young people with autismINMSSAutismRCEsLocal generic specialschools (tier 3)Specialist resource baselinked to mainstream school(tier 3)Mainstream statementMainstream school action plusMainstream school actionGood practice in ensuring a continuum ofeducation provision: The Corley Centre, CoventryThe Corley Centre, Coventry, is a special school forchildren aged 11–16. It has an integrated outreachteam called Coventry Autism Support Service (CASS),which offers a targeted service for all children andyoung people with a diagnosis of an ASD. The localauthority devolves the budget for the outreach serviceto the school. The integrated provision means thatthe Corley Centre has an overview of all children andyoung people with statements for ASD across the city(currently 245 in special schools, and approximately640 in mainstream schools.) Information about thesepupils’ needs, the support they have received and willneed, and liaison with parents culminates in integratedplanned support and provision. This results in bettertargeted support, a continuum of provision, andinformed placement for all children and young peoplewith a diagnosis of an ASD. The continuum of provisionranges from targeted support from CASS in mainstreamschools, placement in a specialist resource base,links to enrichment opportunities in the special school,placement in the special school, to placement inthe special school with extended day opportunitiesand/or residential experience for two nights a week.Consequently, enhanced local provision has reducedthe number of out-of-authority placements.Funding for CASS comes from out-of-city and localauthority budgets, and from service level agreementswith schools. Separately, there is an agreementwith the LA that, of the money delegated to themainstream schools for the ASD resource bases, a setamount is given to CASS to cover the cost of an SLA toprovide support and professional development to thebases. CASS offers professional support to pupils andstaff, with a staged provision according to need. TheCorley Centre has developed two resource bases in aprimary and secondary school, and a further resourcebase is to be provided within a new-build primaryschool, due to be completed in 2012.CASS city-wide information extends to being able toidentify the best placement for each child, to ensurethey are placed appropriately, whether in the specialschool, the resource base, or a mainstream schoolwith support.Placement of students for the primary resource baseis time-bonded to two years, although it is not alwayspossible to estimate this accurately. Free flow ofstudents through the resource base ensures wideraccess to places.The school also offers post-16 provision (16–18) for sixplaces per year group, which is funded separatelyby the local authority. This is for students in years12–13 who need some extra support while managingLevel 1 and 2 courses in college. Those pupils whoneed full-time education in a school go to anotherspecial school. The colleges attended by these pupilshave had ASD training from CASS, which ensuresconsistency of approach.The school offers residential provision according toannual review recommendations. The residentialprovision is usually a result of offering the opportunityto have more work on social and independence skills.The school provides this through either extended dayactivities or up to two days residential experience perweek.Special schools [provide] education for childrenwith the most severe and complex needs, and[share] their specialist skills and knowledge tosupport inclusion in mainstream schoolsRemoving Barriers to Achievement (DfES 2004)Contact: Helen Bishton, Principal of the Corley CentreA local authority model for a continuum ofprovision: Oaklands Park School, DawlishThose children and young people with autism and themost complex needs continue to require specialistmulti-agency provision often including 1:1 supportfor 52 weeks of the year. Traditionally this has beenprovided by INMSSs. However, some local authoritiesare working sub-regionally to develop their own rangeof autism and complex needs-specific provision.Oaklands Park School, Dawlish, is an example of thesuccessful outcome of a local authority and schoolcommitment to and realisation of supporting childrento have a holistic and personalised provision, whichmeets individual needs, and provides consistencyof care and education. With its range of residentialprovision, pressure on families is alleviated, butensures that contact with families is maintained asproviders are within reasonable travelling distancefrom the children’s homes.Devon County Council and Oaklands Park Schoolhave displayed vision in welcoming and funding thedevelopment and expansion of opportunities forchildren and young people with an ASD and complexneeds so their needs can be met locally. The planningphase has taken between two and three years. Thelocal authority has invested £7.5 million to providetwo accommodation blocks, which are of a very highstandard, as well as a new education block. Provisionincludes access to a range of in-house therapeuticsupport, including occupational therapy, speechand language therapy, a school nurse, and closelinks to local authority agencies. As a result the localauthority in partnership with the school now has thefacility to offer a range of specialist and bespokeprovision to meet the complex needs of children andyoung people within their own authority, and to usethe independent sector when they require additionalcapacity or level of specialist support. The places atthe school are pre-purchased by Devon and Torbay.Oaklands Park School, Dawlish, offers a range ofprovision for pupils with complex needs and ASDs.This includes day provision, weekly boarding, termlyboarding, 52-week boarding and respite care. Theschool also offers up to 400 respite bed nights for upto four of its own children or young people at a timeduring holidays, overnight and weekends, accordingto their care needs and care planning.Contact: Bob Pugh, Principal, Oaklands Park School,DawlishRecommendationAll local areas should ensure there is a range ofappropriate provision to respond to the needs oflearners across the spectrum, including those withcomplex needs that may challenge traditionalservices.16 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 17

Further educationAccess to short breaksLearners with autism often experience significantbarriers in accessing further education provision.As a result, 30% of referrals to INMSSs at post-16 arefor pupils with an ASD and complex needs. The reportValuing People Now (DOH 2009) highlighted theneed for learners with autism to experience equalaccess to further education. For learners with autismand complex needs this often requires developingspecialist local provision including autism-specialistsixth form provision.Good practice in autism specialist furthereducation provision: City College, NorwichCity College, Norwich, has created the Rug Room,a regional centre for learners with autism. The RugRoom offers a safe haven for students throughout theday, and is designed to provide alternative spacefor lunch, work (including IT facilities), time out andspecialist support. This is an effective alternative toINMSS provision.The project to make ASD-specific provision within thecollege came about as a result of an ASD studenttelling the college that what was needed was aseparate room for these students. Part of the projectwas to consult with students and to have their inputat every stage of development. The City Collegewas the first college to offer this ASD-specific provision.The college was able to support students whoseprevious placement had broken down. The existenceof the Rug Room showed there was somewhere to goand someone to speak to. It has been a successfulmodel for reducing anxiety and enabling access tocourses, and as a result retention and success rateshave improved.The college has also developed a transition supportcourse called Purple Phoenix, for pupils with an ASDbefore moving on to level 1 or level 2 courses.Preparation for transition to college from a specialistpupil referral unit begins during Year 12. This involvesjoint working of college and school staff across bothestablishments, enabling taster sessions, so thattransition is successful for pupils with an ASD. As a resultof innovative work with the local college, the pupilreferral unit has a group of seven post-16 pupils whofollow college courses in parallel in school, beforetapering the time spent in school so that confidencein attending college with support is ensured.This combines with Project Search, a link with a localhospital, which offers internships to pupils with an ASDand complex needs. A college tutor or job coachruns a year-long programme of work training for 12young people via a series of work placements ina host employer organisation. ASD students at CityCollege, Norwich, benefit from this initiative.Contact: Vicky Plowright: City College, NorwichRecommendationLocal areas should ensure a range of appropriatelocal further education provision for learners withautism and complex needs to reduce currentreliance on INMSS placements (30% of which arefor further education).Aiming High for Disabled Children (DCSF 2007a)recognised that disabled children had the right to thesame opportunities to develop their potential as allchildren, and that families with disabled children hada right to short breaks from the responsibility of lookingafter their disabled child in order to lead a normalfamily life. The report acknowledged that children withautism or challenging behaviour were disadvantagedwhen they could not access such services:All young people will have access to a diverse andattractive local offer of purposeful, engaging andexciting positive activities and places to go thatresponds to their needs and supports their personaldevelopment, including providing routes into morededicated support and guidance for those whoneed it.Aiming High for Young People (DCSF 2007a)A majority of young people with autism placedin INMSSs are in residential provision. One of thereasons for this is that families cannot take shortbreaks, so children and young people are placedin residential schools when other support mightmake this unnecessary. However the highest level ofresidential placements is for pupils in termly residentialprovision. This suggests that, for some, enhancedsupport for families might lead to a reduction in thoseplacements.Good practice in improving access extendedactivities, short breaks and respite or residentialprovision: RotherhamRotherham has an exceptionally high level of childrenand young people – over 1000 children; 1 in 70 hasan ASD. There is a similar increase in neighbouringauthorities. As a result of good diagnostic serviceschildren and young people are being diagnosedmore robustly. The Autism Communication Teamforms part of the Children’s and Families’ SpecialNeeds Service. The team does not teach but carriesout core work in schools generally in an advisoryconsultative role. It has links with the Behaviour SupportService and does some work with children and youngpeople with an ASD who are at risk of exclusion.The Autism Communication Team in Rotherham,in partnership with the Youth Service, runs an autismspecificyouth club two nights a week for children andyoung people with autism. This provision is for childrenaged 13–19, and was originally funded by extendedservices but is now funded by the programme AimingHigher for Disabled Children. Young people with autismand their siblings have access to specific support,reducing isolation and increasing confidence.Evaluations from parents and children and youngpeople have been very positive.Information about the youth clubs is disseminated toall secondary schools. Individual children and youngpeople are invited directly, sometimes by the localbranch of the NAS, and some are ‘referred’ by theEducation Psychology Service. Most children andyoung people start off being brought by their parents;for many, this is the first time there has been any ASDspecificprovision for their child.The team employs four inclusion support workers whohave additional qualifications in ASDs, who work yearround, enabling the team to run holiday groups forsiblings of children and young people with an ASD.These are split into different age groups and offeropportunities for children and young people to takepart in a range of activities and trips. These groupswere attended by 22 young people aged 8–11, andby 19 young people in the 12–17 group. Funding fromextended schools services enables these groups totake place. In addition there is some respite and shortbreakprovision for families of children and youngpeople with complex needs.Contact: Gill Capaldi, Rotherham AutismCommunication TeamRecommendationLocal authorities should develop appropriatespecialist short-break provision, including overnightbreaks, for young people with autism and complexneeds in order to reduce reliance on INMSSs (asa majority of such placements involve part-timeresidential provision).18 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 19

Mental health: access to CAMHSThe United Nations Convention on the Rights of theChild states that health is the basis for a good qualityof life and mental health is of overriding importancein this. Yet 70% of children and young people withautism have additional mental health difficulties(eg anxiety, depression); these are often preventablebut are unrecognised. We are therefore failing manychildren and young people with autism. Youngpeople with autism require better access to childand adolescent mental health services (CAMHS).All children and young people services supportingpeople with complex SEN need to increase their focuson promoting mental wellbeing.Good practice in improving access to CAMHS:the Hope Service, SurreyHope is a multi-agency service that bringstogether staff from child and adolescent mentalhealth services (Surrey and Borders PartnershipNHS Foundation Trust), social care and education(Surrey County Council) to work with young peoplewith severe mental health, social, emotional andbehavioural problems. It provides intensive day andcommunity support and interventions to reduceor prevent the need for admission to specialistplacements. It is expected that children and youngpeople referred to the service spend about 6–9months in it. The health service refers young peoplewho have such complex mental health issues thatthey are at risk of going to tier 4 for mental health.The main aim of the service is to work in partnershipwith education and social care staff, tier 3 CAMHSteams, families and carers, local authority children’steams, and other professionals, schools and servicesinvolved in helping the young person to cope withtheir condition within their environment, enhancingtheir functioning and assisting and educating family/carers with the task. By doing so and gate-keepingentry to tier 4, the service aims to reduce the needfor tier 4 beds and out-of-county placements.The Hope Service works with young people with verycomplex mental health needs that cannot be metby one agency alone. It provides community supportand/or day programmes, including education, toyoung people with the aim of improving their mentalhealth and emotional well-being and reintegratingthem back into education, training or employment.The team includes social workers, nurses, teachers,psychologists, art/drama therapists, psychiatrists,occupational therapists, dieticians and supportworkers.Following a model in which there is access toCAMHS by children and young people with an ASDand complex needs, it is expected that replicatingaspects of this specialist provision will reduce use oftier 4 CAMHS.Outcomes from the Hope Service include:• reduction in out-of-county placements orpsychiatric assessment units• targeted multi-agency provision to meet high tariff(tier 4) mental health needs• pupils remain in their own locality• holistic personalised provision that meets individualneeds and aptitudes.The Hope Service has two pupil referral units, eachwith a school improvement partner and individualOfsted inspections. Provision is individualisedaccording to need. Some pupils access programmeson site at either of the schools; others haveprogrammes through outreach at home or in theirmainstream school. Each pupil’s timetable reflectshis or her needs; it takes longer to accustom somepupils who have been out of school for four yearsto engaging with education. Although the provisionis intended to be for six months only, the servicerecognises that there are some pupils who needa longer time and ongoing support beyond thatnotional length of stay.To support pupils’ mental health needs, the servicehas a consultant psychiatrist for two days a week. Sheworks in tandem with pupils’ existing psychiatrists, andprovides psychiatric care for those children referredby social care. The psychiatrist leads the family workteam. This offers children and young people theopportunity with their families to talk through issuesto prevent family breakdown and build strongerrelationships.The service employs five teachers who are employedacross both sites. In addition there are three activityworkers who also work at both sites. The service alsoemploys an occupational therapist, psychiatric nurses,a part-time psychologist, an art therapist and a dramatherapist. In total the service employs 18 staff. Pupilsalso have access to social workers according to needand referral routes.Contact: Judith Sherington, Head of the HopeService, SurreyRecommendationCAMHS should develop more preventativeservices and better access to appropriatetherapeutic services for young people withautism and complex needs.20 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 21

Multi-agency workingThe SEN green paper (DfE 2011) highlights the needfor more effective joint working across agenciesincluding the proposed introduction of integratedhealth, education and care plans.Young people with autism and complex needs requiresupport from community professionals from a rangeof different agencies. The development of integratedmulti-agency autism teams facilitates effective jointworking protocols across social care, health andeducation at a strategic and a practitioner level.The Audit Commission national report Out ofAuthority Placements for Special Educational Needs(2007) concluded that ‘while strategic planning forthe educational needs of children with complexneeds has improved, opportunities to provide moreintegrated and cost effective services through jointworking between education, social care and healthservices were not being maximised’.The report suggested that a ‘lack of integrated localprogrammes of support for children and families, suchas therapies and mental health support’ had led todemand for out-of-authority provision in many areas.While adapting local provision to meet the needs ofchildren and young people with an ASD and complexneeds is essential, supporting services are alsoneeded to meet their needs, which are often suppliedby out-of-authority providers. These include access tooccupational therapy, speech and language therapyand CAMHS, and multi-agency specialist support.Training to meet needs better and more effectivelyis also needed.Good practice in multi-agency working inCornwall: Early Support and the commonassessment frameworkEarly Support is an approach to working in a multiagencyway for the benefit of disabled children andyoung people (up to adult services) and their families.The whole ethos of Early Support is to put the childand family at the centre and to listen to their viewsand priorities, and from this be guided by them asto which services and support they feel they need.Information and service provision is co-ordinated, andfamilies are supported to find out some of the thingsthey need to know. In addition, individual professionalsand support agencies working with a family aresupported in integrating the services they provide andworking in partnership with parents and carers.Once the process is initiated, by either a parent ora professional, a Team Around the Child meeting isheld. The professionals who are working with a childare invited to attend this meeting; it is an opportunityfor parents to have as many professionals working withtheir child as possible in one place and can thereforereduce the need to repeat answers to questions, andkeeps everybody informed about what is happeningfor that child and family.After the Team Around the Child has ascertained theparents’ priorities and the child’s current position, theteam puts together a family service plan, which hasclear actions stating who is responsible for carryingthem out and by what date they will be completed.The family is asked to choose a lead professionalwho can act as one point of contact for the family;this is someone who will support the family by liaisingwith other professionals on their behalf, help findout information for the family and review their familyservice plan in between meetings to ensure allactions are being met.Measuring effectiveness by quarterly statisticalanalysis of the common assessment framework, thelead professional role and early support enables thelocal authority to track incidence and outcomesin these three areas. The age, gender and localitybreakdown of the framework initiation allow the localauthority to map and plan for services. The rangeof roles and organisations initiating the frameworkenables the local authority to evaluate the spreadof its initiation across different agencies, and theeffectiveness of integrated working in everydaypractice. This then leads to further analysis of theunderlying reasons why certain professionals aremore or less likely to be initiators of the commonassessment framework process. Progress and trendscan be measured each quarter for key areas, such asthe number of initiators who go on to become leadprofessionals. This indicates the impact of guidanceprovided by the local authority on roles within thisprocess. Information from statistical analysis is usedto inform developments and shape practice. Inaddition, feedback from young people, parents andcarers and lead professionals through the commonassessment framework action plan reviews also helpto measure impact and effectiveness.RecommendationsLocal authorities should ensure there is effectivemulti-agency working to enable families to receiveintegrated targeted support, which can mirror thatoffered by INMSSs.22 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 23

Supporting carersWorking with carersRates of family breakdown are significantly higheramong families who have a child with autism. Localauthorities need to demonstrate a commitment tosupporting families.Early support for disabled children and theirfamilies is essential to prevent problems such asdeteriorating health, family stress and breakdown,children potentially being placed in care, anddeteriorating emotional and social developmentfor disabled children and their siblings.Aiming Higher for Disabled Children (DfES 2007)Good practice in preventing family breakdown:BristolBristol NHS commissioned the NAS to develop anddeliver a family support programme for small groupsof up to eight families with children who have autism,which focuses on preventing family breakdown andpromoting positive family life.The programme seeks to support parents, give themtools to deal with problems linked to their child’sneeds as they arise, and give them information aboutautism. The programme offers a home visit beforeor during the course. The programme separates theparents by the age of the child.The programme covers sessions on autism anddiagnosis, education and transition to adult life,self-esteem and social skills, education rights andlaws, understanding behaviour, keeping safe andanti-bullying, relationships, puberty and sexuality.The groups also work with parents to develop their‘All About Me’ passport, similar to person-centredreviews, which includes the top ten tips the schoolor babysitter needs to know about the child. Alsoincluded are the child’s talents, favourite things,family details and so on. This short-circuits the otherinformation held by a school, so the teacher orbabysitter holds the most essential information aboutthe aspect of the child, for example significantpreferences and behaviours.The group also adopts a trouble-shooting approachto parental problems. The structured programme usespractical tips, and day-to-day examples of how thingswork, such as standard letters parents can use forschool, for instance a request for the writer’s email tobe circulated to other parents of children with an ASDto speak to them to offer mutual support, or a letterdesigned to enquire about the social skills advice thechild is receiving in school.The project is validated by Bristol University and therehas been very positive feedback from the courses sofar. One positive outcome has been that parents nowsupport each other outside the group.Contact: Andrew Powell, NASRecommendationsLocal authorities should consider introducing familysupport programmes such as the one in Bristol tohelp prevent family breakdown and the need formore specialist provision.We have worked closely with family carer groupsto ensure that this strategy reflects the concernsthey raised during the consultation – that they beseen as expert partners in the care of their lovedones and that the particular needs of people withmore complex conditions are met.Valuing People Now (DOH 2009)Good practice in supporting and working withcarers: Autism in Mind, SunderlandParents with children with autism formed the groupAutism in Mind (AIM) in 2001. They have championedthe cause for children and young people with autismin Sunderland. The group has engaged effectivelywith the local authority to promote good practice.The energy, commitment and enterprise of initiallysix parents have resulted in representation for autismat a range of levels in the local authority, and referralsfrom a range of services.As a result of forging a link with the Children’s Trust,AIM has an input into the Sunderland strategy fortransformation for children and young people withlearning difficulties or disabilities for 2009–2025,and responds to all local authority consultationson children and young people with autism. AIM hasnow become involved in adult and children’s servicesplanning and has links to the Aiming High agendaand Connexions.The group worked with a local authority autismplanning group to produce a booklet, which isgiven to all parents when a child is diagnosed withautism. The group has very good links with the AutismOutreach team, and liaises with parents, carers andother teams and services.AIM offers support for parents before, during and afterdiagnosis. One of our primary functions is to lessenthe feelings of isolation parents of children with autismcan feel.Our parental supporters offer telephone and onlinesupport, and quarterly meetings. They help withenquiries about school, parental concerns and howto fill in forms to claim Disability Living Allowance, andsupport parents at school meetings, with social careand with CAMHS.AIM also has representation on the Children’s TrustStrategic Partnership Board. This ensures children andyoung people with autism continue to have a highprofile in decision making and strategic planning.Contact: Carole Rutherford, Autism in Mind,SunderlandRecommendationsChildren’s trusts should follow the example ofAutism in Mind in Sunderland and invite parentswith children with an ASD to have an input intostrategies for children and young people withautism and learning difficulties or disabilities.26 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 27

Public and third sector partnershipworkingRegional partnershipsThe public sector cannot always be expected to havesufficient expertise to support those with the mostcomplex needs, but there is an increasing numberof examples of public third sector partnerships workingto develop local provision with the expertise torespond appropriately to the needs of those with themost complex needs. The SEN green paper Supportand Aspiration (DfE 2011) highlighted the need forlocal authorities to make better use of expertise withinthe third sector.The report Special Educational Needs (PolicyExchange 2011) proposed that as part of theirgeneral approach to ensuring there is an adequatesupply of good quality provision in local areas,regional partnerships should monitor progress madeby schools and local bodies in attracting and usingthird sector support.Good practice in partnership working betweenthe public and third sector: East AyrshireReplicating the partnership working between theNAS and East Ayrshire where the NAS supported thedevelopment of a satellite school would enablechildren and young people with autism and highlevels of challenging behaviour to have their needsmet locally and remain close to their families andwithin their local area. This would facilitate theopportunity for close working at transition.The NAS has worked with the local authority in EastAyrshire to support the development of local provisionfor a small number of children and young peoplewith autism and challenging behaviour. The outcomehas been partnership working to provide a satelliteresidential children’s home and school for threepupils. The school is a satellite for Daldorch HouseSchool and Continuing Education Centre, which isan hour’s drive away. The local authority has providedthe building, and the NAS has trained the staff andadvised the local authority. The 52-week children’shome with education for three young people withautism and very challenging behaviour enables themto have local provision. They live near their familiesand can be supported into local authority provisionpost-19.Although the costs are no different from other highsupportresidential education provision, the serviceprovides increased opportunities to transition intocommunity based provision in adulthood. It thereforeoffers better outcomes and value for money. Otherauthorities, including Bristol, are also exploring thepotential to work in partnership with the third sectorto prevent out-of-area placements.Contact: Jane Vaughan, NASRecommendationThe public sector should develop partnerships thatenable specialist public services to make betteruse of the expertise offered by the third sector inorder to ensure the success of specialist provision.It is not always possible for local authorities to establishtheir own schools for children with low incidence verysevere and complex SEN, such as severe ASD and/or severe behavioural, emotional or social difficulties(BESD). Local authorities should consider whatcooperative arrangements across local boundariescould be put in place to meet the needs of thesechildren. They should also consider whether andhow particular expertise of non-maintained andindependent schools could contribute to local,sub-regional and regional provision. Local authoritiescan also work together in regional or sub-regionalgroups to plan and commission services andprovision.Services for children and young people with lowincidence needs promote the development ofsub-regional multi-agency centres of expertise notonly to provide for those with the most severe andcomplex needs but also as a hub for training andoutreach support. This would result in an economy ofscale where resources are used more efficiently andeffectively (DfES 2006).Good practice in sub-regional working (economyof scale): Greater Manchester Autism ConsortiumThe Greater Manchester Autism Consortium has beenformed by the ten social services departments inGreater Manchester.There are autism services development groups,which are multi-agency, in each of the ten localareas. These groups comprise parents of peoplewith autism and key staff in local statutory servicesin social services, health and education. The groupsare working strategically together to develop andimprove local services. They link with each otheracross the region through the consortium. The chairsof the groups are also members of the ConsortiumSteering Group.Reducing spending on out-of-authority placements ofchildren and young people with autism by developinglocal services was an impetus for the original project.For a time some of the local authorities achieved amuch-reduced spend on-out-of authority placements,though this has been compromised by some of thecuts to services locally recently. The ten authorities tryand work together on a number of issues; they havebeen most successful in developing shared trainingmaterials and even some shared training delivery.The project also facilitates sharing of good practiceacross a number of areas via an annual conventionfor all the development groups.The consortium provides information to parents,people with ASDs and professionals, and directspeople to the relevant statutory services and voluntaryagencies in their area. Enquiries can be made bytelephone, email or letter. An individual response isprovided to each enquiry.Each local authority pays a small subscription towardsdeveloping the Family Services Development Project,which is spread across an area with a population of2.3 million people. As non-statutory services are beingcut, the rate of calls to the consortium is increasing.Feedback for the Family Services DevelopmentProject has been very positive.Contact: Mari Saeki, Project Officer, Family ServicesDevelopment Project, NASRecommendationLocal authorities in the south west should considerforming an autism consortium similar to that inGreater Manchester, which achieves economiesof scale through sub-regional strategic planning.28 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 29

Person-centred planningTransitionsPerson-centred planning and approaches offerpowerful ways of listening to young people,empowering them to plan their own futures, andsupporting them to achieve their aspirations.Personalisation through Person-Centred Planning(DOH 2010c)Good practice in person centred planning:Ellen Tinkham School, ExeterA DOH report in 2010 summarised the benefitsof person-centred planning:Person-centred planning and approaches offerpowerful ways of listening to young people andenabling them to plan their futures. Person-centredplanning is rooted in inclusion and equal rights andcan be used to enable disabled young people tohave the same life chances as their non-disabledpeers.Good person-centred transition planning providesyoung people and their families with informationabout how they can be supported to move intoadulthood and to do the things they want. Whenused in conjunction with personal budgets andthe right support in key areas such as employment,it enables people to have equal life chances andfull lives.Person-centred transition planning forms part ofthe transition review from Year 9 as part of theannual review planning cycle. The school worksvery closely with staff in Adult Services, who lookat the person-centred planning reviews closely whenbrokering specialist services. From post-16, the furthereducation coordinator at the school works closelywith Adult Services. This was piloted in 2009/10 andresulted in very good transition relationships andbetter communication as a result. Positive feedbackfrom pupils who return to the school shows theeffectiveness of this approach.Contact: Jill Allen, Children’s Services Coordinator,Ellen Tinkham SchoolRecommendationLocal authorities should promote more use ofperson-centred planning to put the young personand their families at the centre of the planningprocess and support young people to achievetheir aspirations.Through school, children with autism and theirfamilies will usually have access to support thathelps them achieve and be included. It alsoprovides a focal point of activity in the day.Therefore one way of improving access to servicesfor adults with autism is by focusing on managingthe transition to adulthood so that young peoplehave access to the services they need from thestart of their adult life.Fulfilling and Rewarding Lives (DOH 2010a)Good practice in providing transitions:Nottinghamshire Adults with Asperger’s TeamNottinghamshire established a county Asperger’sTeam in 2009, primarily as a commissioning teamdelivering care management to individuals. Theteam is unique because, although it aspires tobeing multi-disciplinary, it is the only social care-ledAsperger’s team in England.Although focused on adults, the team works closelywith Connexions or Children’s Services. It can puttogether commissioned plans and assist them asbrokers with the personal budgets. The team canalso advise and support with accommodation,employment and college placements, offer supportwith social and leisure activities, and work alongsideindividuals.RecommendationLocal authorities should consider developingan adult and transition autism service so youngpeople with autism can access appropriatesupport to live effectively in community settings,have their needs anticipated and lead morefulfilling lives.Personalisation through Person-Centred Planning(DOH 2010c)The Ellen Tinkham School uses person-centredreviews for every child in the school. The reviews areone page profiles with a summary of what works forthe child, their views, a communication chart andcommunication plans. These plans are reviewedas the child moves up the school, and they informthe work of teachers, teaching assistants andother professionals in the school, including externalagencies.The team is dedicated in every way to target youngpeople who would otherwise not have had a service.Since beginning in 2009, the team has had over 200referrals, and works regularly with 150 young people.It has launched an online directory of services foradults with Asperger’s Syndrome in Nottinghamshire.Contact: Christopher Mitchell, Nottinghamshire Adultswith Asperger’s Team30 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 31

Comprehensive integrated provisionThose councils that spend less on out-of-authorityplacements have developed in-house provision forsecondary ASD pupils with challenging behaviour.This provision was most effective in preventing outof-authorityplacements when it included additionalprovision such as outreach or respite and wassupported by other agencies including CAMHS(Audit Commission 2007). Aiming Higher for DisabledChildren (DfES 2007) states:Extended schools guidance, which makes it clearthat children with special educational needs ordisabilities must be able to access all services.There is much good practice in providing responsiveservices, for example extended schools guidanceexplains how special schools in particular oftenact as a hub for delivery of health, social care andrespite services for children and parents.Policy Exchange recommends extending the roleof special schools to become local centres ofexcellence.Good practice in developing a comprehensiveintegrated provision: Fosse Way School, BathFosse Way School, Norton Radstock, near Bath, is ageneric special school for children and young peopleaged 3–19. The school has a roll of 160. The schoolhas the following characteristics:• An autism specialism: Pupils with an ASD comprisetwo thirds of the school population.• A resource base attached to a mainstreamschool: The school has a resource base in a localmainstream school, which young people attendwhile on the roll of Fosse Way School. This year astudent has been accepted at Oxford University forthe first time.• Project Search: The school has a sixth form, andwas part of a pilot of four local authorities for ProjectSearch, which offers work training in a local hospital.This helps young people secure permanent jobs.From a cohort of ten pupils, six have securedemployment, two are in job development, and twohave gone into further education.• Extended activities: The school provides arange of extended services for the community,including a range of after school clubs, holidayplay schemes, community information andcomputer technology classes, and support groupsfor parents of children with an ASD within the localauthority. The school has access to CAMHS, whichsupport individual children and staff training inthe management of specific children and youngpeople. Integrating provision in this way ensurestimely access to appropriate and specialist support.• Residential provision: The school offersresidential provision for 12 pupils. In order to ensureconsistency and uniformity, residential staff work asteaching assistants in the school during the day forpart of the week.• Outreach and training: The school provides theASD outreach and training service for the localauthority and maintains a database of pupils withan ASD via a service-level agreement. The schoolprovides a multi-tiered training framework includingaccess to specialist courses such as Treatment andEducation of Autistic and Communication RelatedHandicapped Children (TEACCH) and Masters’degree training. The school and service works withthe ASD Strategy Group to inform future planning.• Commissioning of supported living: Throughliaison with the local authority Fosse Way identifieda cohort of young people at risk of being placedout of the authority on transition to adulthood. Theschool worked with parents, the local authority andthe NAS to commission a supported living schemeof several cluster flats for young people with autism.• Partnership with other organisations: Fosse Wayis a foundation school and part of a trust with otherpartners including Bristol University and the NAS.Fosse Way is applying for a change of status tobecome a special school academy.• A sub-regional catchment area: The school doesnot have a natural catchment area, and the pupilpopulation includes some children and youngpeople from four neighbouring local authorities.• Integration of provision: children and youngpeople with an ASD in Bath have the opportunity toaccess the right level of support for their education,whether they are in mainstream, via training andoutreach from the special school, or within theresource base, via staff from the special school.Children and young people placed at the specialschool are able to access CAMHS, residentialprovision, specialist support for work-related skillsand future employment. The local community canalso access learning opportunities, and familieswith children with an ASD are supported through arange of activities.Contact: David Gregory, Head Teacher, Fosse WaySchoolRecommendationLocal authorities should consider developing acomprehensive integrated autism service, whichincludes education options through specialschools and a resource base attached to amainstream school, social care options throughextended activities, short breaks and residentialprovision, effective input from health, andoutreach and training. Such provision significantlyreduces reliance on INMSS placements.32 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 33

CommissioningConclusionMany young people are placed in an INMSSas a result of a crisis situation, and then found anINMSS that is available rather than local. High-costplacements often lack clear outcomes.There is a need for more intelligent commissioningwith clear outcomes set with target dates forachieving those outcomes. In addition provision couldbe commissioned for a fixed term, for example athree-year placement, during which time there areset objectives and the smooth transition to morelocal community-based service within three years isfacilitated.To provide good value for money, commissionersneed to consider the downstream costs of preventingneed for tier 4 services in adulthood. It is essential thatChildren’s Services don’t just focus on their own budgetwhen looking for ways to save or at value for money.In its report Special Educational Needs (2011),Policy Exchange found that joint accountability forthe outcomes of children and young people wasbetter for providers where there had been directcommissioning of services based on clear servicelevelagreements across health, education and socialcare and other partners.Policy Exchange recommends the introduction of aformal regional tier of organisation, which could planand commission for very low-incidence needs. Thisregional body should nominate and fund regionalcentres of expertise to support local provision andthe commissioning of low-incidence needs. Regionalcentres of expertise could be specialist schoolsdeveloped in partnership with the third sector in orderto use their expertise and commitment to the benefitof specific groups of children.Good practice in commissioning outcomes:Waltham Forest and the SENAD GroupWaltham Forest Council and the SENAD Groupare aware of the long-term benefit of basingcommissioning decisions on the potential for positiveoutcomes for each young person and have foundthat adopting such an attitude is both cost-efficientand positive for children’s development.In order for commissioners to choose the bestprovider to aid a young person’s progress, a thoroughassessment of need is imperative. SENAD worksstrategically to identify young people’s behaviour‘pressure points’, through a functional behaviourassessment helping to improve outcomes and aidprogress for each young person’s future development.In It Together (Children’s Service Development Groupand Local Government Association 2009) describesa range of case studies where local authorities haveworked together with providers to ensure children’sand young people’s outcomes are part of thecommissioning process.Making placement decisions based on predicteddelivery of outcomes is an effective way of creatingsignificant financial benefits. Indeed, in the case ofa child with complex needs, who can often becomeaggressive, placements that can manage this kindof behaviour can generate significant savings asincreased independence and less intensive staffsupport allow for financial savings. When placementsare made on the basis of outcomes, young peopleare ultimately helped towards greater levels ofindependence and can enjoy a higher quality of life.Waltham Forest’s commitment to ensuring the bestpossible outcomes for young people has providedone young person with a positive experience andhe is planning a transition to a supported livingplacement close to his mother, where he will livewith another adult and have a support worker. This isa step that would have been unthinkable were it notfor a commitment to identifying this person’s needsand working towards outcomes that would reflectsignificant progress for this young person.RecommendationLocal authorities should agree clear outcomeswith providers when commissioning places foryoung people with autism and complex needs.This makes it easier for local authoritiesto demonstrate value for money and for INMSSsto demonstrate outcomes.There is a high reliance on placing young peoplewith autism and complex needs in INMSSs often along way from their homes in the south west, whichaccount for 26% of INMSS places. There is a growingneed to develop more appropriate local provision foryoung people with autism and complex needs that isdriven by better outcomes for the individual as a resultof sustaining relationships with their family and localcommunity.The business case suggests that the cost of supportinga young person with autism and complex needsrequiring high levels of support remains high evenwhere specialist local provision has been developed.However, by developing specialist local provisionit is possible to reduce the frequency with whichyoung people require such specialist support andits duration, resulting in significant longer-termcost savings. For example developing specialistlocal provision would provide a hub of expertise,enabling better training and outreach support toprevent placement breakdown in the first place. Inaddition, by maintaining good links within the localcommunity it is easier to move people on to lessspecialist provision in a timelier manner than might beachieved when the placement is a long way from thefamily home.Preventing placement breakdowns within the localityis key to ensuring that the placement is sustained, soit is important to ensure that families with children withautism and complex needs are supported throughshort breaks and targeted support programmes.Good strategic planning, which takes account ofdata and trends, is essential. Authorities that haveplanned a continuum of provision that includesprovision for young people with autism and complexneeds have reduced reliance on INMSS placements.Sub-regional working provides opportunities to shareintelligence and costs in developing local provisionand economies of scale. Some local authorities havestruggled to develop more appropriate local provisionas they lack the expertise to support those with themost complex needs. Partnership working betweenpublic and third sector can provide an effectivesolution to ensure success in developing highlyspecialist provision.Specialist provision needs to have a multi-agencyapproach with input from health and residential carefacilities if it is to prevent INMSS placements.The green paper for SEN, Support and Aspiration (DfE2011), still in consultation at the time of writing, alsoenvisages a higher level of coordinated provisionbetween health, education and social care, and agreater voice for parents.Local authorities that have developed acomprehensive integrated autism service, whichincludes education options through special schoolsand a resource base attached to a mainstreamschool, social care options through extendedactivities, short breaks and residential provision,effective input from health, and outreach andtraining, often have reduced reliance on specialistplacements including INMSSs.Improving opportunities for children and youngpeople with autism and complex needs to have theirneeds met locally through well coordinated localservices will result in better outcomes and value formoney.34 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 35

Summary of government initiativesand policy driversSpecial Educational Needs (Policy Exchange2010)Specialist schools are regional centres of expertiseand school cooperation. An Ofsted review (2010)found thatno one model – such as special schools, fullinclusion in mainstream settings, or specialist unitsco-located with mainstream settings – worked betterthan any other. The effective practice seen duringthe review encompassed a wide range of modelsof provision, often with significant flexibility in theway in which services were provided within any onelocal area. However, some providers visited duringthe review did not have a clear picture of the rangeof support available in their locality. The pattern oflocal services had often developed in an ad hocway, based on what had been done in the pastrather than from a strategic overview of what wasneeded locally.This Policy Exchange report suggests this situationcould be improved by introducing:• a formal regional tier of organisation, which couldcommission for very low incidence needs, monitorlocal provision and develop and spread expertise• contestability at a local level to determine whoshould run high-cost commissioning; a flexiblerange of provision should be created andmaintained.Links between the third sector and schoolsSchools should be given advice and guidance onhow they can develop partnerships with charities inorder to boost their income. Regional partnershipscould also consider the possibility of establishingthird sector partnerships on a larger scale. This mayinvolve a charity or a number of charities contributingto the overall pot for high-cost pupils at a regionalor local level. The amount given to schools for eachpupil could increase in proportion to the additionalfunding raised. There are numerous ways in whichthird sector money can be raised, in addition to usingtheir expertise and commitment. Each area, schooland region will do this differently. Nonetheless, regionalpartnerships, as part of their general approach toensuring there is an adequate supply of good qualityprovision in local areas, should monitor progressmade by schools and local bodies in attracting andusing third sector funding and support.Effectiveness of joint commissioningIn the providers where there had been directcommissioning of services based on clear servicelevelagreements across health, education and socialcare and other partners, joint accountability for theoutcomes of the children and young people wasbetter. Schools should not be the only organisationsheld to account legally for the outcomes of childrenand young people with SEN and disabilities. All theservices involved in any common assessment shouldbe bound equally by its terms.The report recommends:• The government should fund local bodies tocommission specialist provision with a grantdesigned to cover the costs of providing forhigh-cost pupils.• The government should introduce a formal regionaltier of commissioning to address the problem ofvery low incidence commissioning.• This regional body should nominate and fundregional centres of expertise, which could befunded through a number of means: a top sliceof local budgets; a voluntarily agreed top sliceof the per pupil amount for children with certainimpairments; matched funding on the modelof specialist schools.• Regional bodies should consider the possibilityof establishing third sector partnerships on a widerscale to supplement regional funding and drawon expertise.Out of Authority Placements for SpecialEducational Needs (Audit Commission 2007)This report makes the following recommendations:• The needs of many children and young people withcomplex needs, particularly those with autism, arenot currently being met by their local schools.• Better strategic planning, budget planning andcommissioning are required for children and youngpeople with complex needs.• Strategic planning for children with complexneeds is poor and opportunities to provide moreintegrated and cost-effective services through jointworking between education, social care and healthservices are not being maximised.• A lack of integrated local programmes of supportfor children and families, such as therapies andmental health support, has led to demand for outof-authorityprovision in many areas.• Out-of-authority providers have given insufficientdetail about expected outcomes.• Those councils that spend less on out-of-authorityplacements have developed in-house provision forsecondary ASD pupils with challenging behaviour.This provision was most effective in preventing outof-authorityplacements when it included additionalprovision such as outreach or respite, and wassupported by other agencies including CAMHS.• Where strategic planning is less strong, there hasbeen a lack of strategic action, which has resultedin higher levels of placements in out-of-authorityschools.• Councils aim to develop their in-house provisionfor complex needs to reduce their out-of-authorityexpenditure, but funding and expertise are notalways resourced appropriately, and therefore thisprovision is not always effective.• Regional collaboration is currently more focusedon information sharing than procurement of sharedprovision.National Audit of Support, Services and Provisionfor Children with Low Incidence Needs (DfES 2006)This report makes the following recommendations:• CAMHS, speech and language therapy andshort breaks need to be more accessible locallyfor children and young people with severe andcomplex needs.• Sub-regional multi-agency centres of expertiseshould be developed to provide for those with themost severe and complex needs and as a hub fortraining and outreach support. This would result inan economy of scale where resources are usedmore efficiently and effectively.Aiming Higher for Disabled Children (DfES 2007)This is the transformation programme for disabledchildren’s services. The government wants disabledchildren to be a priority, nationally and locally:• ‘All families with disabled children should have thesupport they need to live ordinary family lives.’• Families with children with an ASD and/orchallenging behaviour should no longer bedisadvantaged in accessing short breaks.Fulfilling and Rewarding Lives (DOH 2010a)This strategy has five themes. It advocates:• increasing awareness and understanding of autismamong frontline professionals, including givingspecialist training to staff in health and social careto ensure professionals respond appropriately to theneeds of adults with autism• developing clear consistent pathways fordiagnosis in each area, followed by the offer of apersonalised needs assessment, and the benefitsof local commissioning of specialist autism teamsin order to build capacity for diagnosis and providesupport and training to mainstream services• improving access for adults with autism tothe services and support they need to liveindependently within the community, includingensuring adults with autism can have a rangeof suitable support services to chose from andcan readily access appropriate support to makechoices about their care36 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 37

Summary of government initiativesand policy drivers• helping adults with autism into work• enabling local partners to plan and developappropriate services for adults with autism to meetidentified needs and priorities; the responsiblelocal commissioner should consider developing anautism partnership board (or appropriate planningforum) that brings together different agencies andstakeholders to identify priorities.Support and Aspiration (DfE 2011)This Green Paper recommends there should be morestate-funded schools free of local authority control(academies and free schools). It focuses on:• identification and assessment• giving parents control• learning and achieving• preparing for adulthood• services working together for families.It recommends that statements should be replacedwith education, health and care plans by 2014,including:• single assessments (possibly combined withassessment for Disability Living Allowance andstronger entitlement to these services), up to age25• the right to express preferences for anystate-funded school through an extended healthcare plan (eg special school, academy, freeschool – not independent!)• an increase in short-break funding and legalentitlement to personalised budgets with the planfrom 2014.The Green Paper also recommends:• There should be a quality mark for schools withexcellent and innovative SEN support.• Special schools should share expertise with localmainstream schools.• Ofsted should consult on new school inspectionarrangements, including SEN.• Vocational and work-related learning opportunitiesfor 14–25s should improve.• Ways of aligning pre- and post-16 funding toimprove consistency of support should be explored.• There should be recognition that those withcomplex (low incidence) needs require specialistsupport. There should be targeted funding to thevoluntary and community sector – especiallyaround specific needs (recognition that autismincreased by 60% between 2005 and 2010).Planning and Developing Special EducationProvision (DCSF 2007b)This report makes the following recommendations:• Local authorities should be encouraged to developa range of provision to meet the range of children’sSEN. This may include provision in mainstreamor special schools, specialist resourced provisionwithin a school, a specialist unit attached to orco-located with a school, or mainstream earlyyears and childcare settings, or through federations,collaborations and partnerships.• The key features of any form of SEN provision shouldbe its flexibility and capacity to meet the individualneeds of children through giving them access toappropriate specialist support and advice, howeverprovided, and its effectiveness in improvingprogress and raising achievements.• Local authorities may develop SEN provisionthemselves or commission from other statutory,private and voluntary providers, includingindependent and non-maintained special schoolsand specialist support and outreach services.• It is not necessary for all types of provision to belocated within a local authority area, but a localauthority should know where to access appropriateprovision that is required for an individual child withSEN where that is not provided locally.• The patterns of provision in each local authorityarea should be informed by local needs andcircumstances, careful consultation and a widelyshared local understanding of the role of specialistprovision in meeting children’s SEN and providingaccess to education for disabled pupils.• The analysis of local needs should lead tointegrated commissioning arrangements forservices, through the mechanism of localchildren’s trust or other arrangements, and thesearrangements should always link to local primarycare trusts for health provision and services and,where appropriate, to local providers within theprivate and voluntary sectors.• Local authorities can also work together in regionalor sub-regional groups to plan and commissionservices and provision. Local partners shouldconsider putting in place pooled budgets, usingflexibilities granted under Section 31 of the HealthAct (1999) or Section 10 of the Children Act (2004),to underpin the delivery of specialist support forindividual children.National Autism Plan for Children (APPGA 2003)This plan specifies that each local area shoulddevelop a multi-agency coordinating group thatoversees the development of local ASD services.Autistic Spectrum Disorders (DfES 2002)This report recommends that each local educationauthority should have a clear policy on ASD that takesaccount of demand.Impact in changes in provision for learners withLDD (Dewson and Tackey 2010)This report made the following observations:• Nearly one in five (19%) providers have reducedtheir provision for adult learners with learningdifficulties and/or disabilities.• Providers who have taken steps to reduce theirprovision claim their actions are driven by reducedfunding, and cannot then ensure that alternativearrangements for learners affected are in place.• All providers work with local partner organisations toplan and assess future demand, but partnershipsdo not take a particularly strategic approach tomeeting the needs of adults with learning difficultiesand/or disabilities.Personalisation through Person-Centred Planning(DOH 2010c)The report noted that listening to young people andenabling them to plan their futures improves theoutcomes of those with disabilities. Research intogood practice suggests that:• it is important to tailor this to their needs andaspirations; the process should be spread out overa number of years• statutory processes for transition need to be usedconsistently• adult and children’s services need to work togetherto ensure that young people maximise their lifechances.Valuing People Now (DOH 2009)This report:• aims to include everyone and recommends thatcommissioners need to address needs of fourpriority groups including people with autism• recognises that people with autism need supportfrom staff with understanding and experience ofworking with them.Special Educational Needs and Disability (DCSF2010)The report suggested that good practice in theseareas appeared to be influenced by strong multiagencyand integrated approaches to working,particularly good communication and sharinginformation between agencies.38 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 39

Summary of government initiativesand policy driversReferencesAET research (2008) recommendsThis research makes the following recommendations:• There should be better knowledge andunderstanding of autism.• Local authorities should explore options to reducereliance on out-of-authority placements away fromthe local community.• Local authorities and primary care trusts shouldidentify long-term outcomes for children and youngpeople with autism being placed out of the localauthority’s care.• Local authorities should analyse data on exclusionsfor children and young people with SEN andspecifically autism.• There should be a range of further educationprovision suitable for learners with autism.• Good information, training and support should beavailable to parents of children and young peoplewith autism.Make School Make Sense (NAS 2006)This report found:• there is a shortfall of autism-specialist maintainedspecial schools• around 20% of children with autism experienceexclusion• some 87% of children with autism experiencebullying weekly.It recommended that all local authorities developa diverse range of autism provision.All Party Parliamentary Group on Autism (2003)National Autism Plan for Children (NAPC)Audit Commission (2007) Out of Authority Placementsfor Special Educational NeedsAET (2008) Educational Provision for Children andYoung People on the Autism Spectrum Living inEngland: a review of current practice, issues andchallenges, Autism Education TrustCarpenter, Barry, ‘The challenge of children withcomplex needs: seeking solutions and findingresolution’, Specialist Schools and Academies Trust,2009, https://www.ssatrust.org.uk/subjects/sen/Pages/SEN_edublog_barrycarpenter.aspx.Children’s Service Development Group and theLocal Government Association (2009) In It Together:achieving quality outcomes for young people withcomplex needsDCSF (2007a) Aiming High for Young People: a tenyear strategy for positive activities, Department forChildren, Skills and FamilyDCSF (2007b) Planning and Developing SpecialEducational Provision: a guide for local authoritiesand other proposers, Department for Children, Skillsand FamilyDCSF (2010) Special Educational Needs andDisability: understanding local variation in prevalence,service provision and support, Department forChildren, Skills and FamilyDewson, S and Tackey, ND (2010) Impact of Changesin Provision on People with Learning Difficulties and/orDisabilities post-19DfE (2010) ‘Special educational needs in England,January 2010’, Statistical First Release, SFR 19/2010,www.education.gov.uk/rsgateway/DB/SFR/s000939/sfr19-2010.pdfDfE (2011) Support and Aspiration: a new approachto special educational needs and disability – aconsultation, Department for EducationDfES (2002) Autistic Spectrum Disorders: goodpractice guidance, Department for Educationand SkillsDfES (2004) Removing Barriers to Achievement:the government’s strategy for SEN, Department forEducation and SkillsDfES (2006) National Audit of Support, Services andProvision for Children with Low Incidence Needs,Department for Education and SkillsDfES (2007) Aiming Higher for Disabled Children:transforming services for disabled children and theirfamilies, Department for Education and SkillsDOH (2009) Valuing People Now: a new threeyearstrategy for people with learning disabilities,Department of HealthDOH (2010a) Fulfilling and Rewarding Lives: thestrategy for adults with autism in England, Departmentof HealthDOH (2010b) Healthy Lives, Healthy People: our strategyfor public health in England, Department of HealthDOH (2010c) Personalisation through Person-CentredPlanning, Department of HealthNAS (2006) Make School Make Sense: autism andeducation, the reality for families today, NationalAutistic SocietyOfsted (2010) The SEN and Disability ReviewPolicy Exchange (2010) Special Educational Needs:reforming provision in English schoolsSomerset County Council (2010) The Somerset SENStrategy for Building Effective Local Skills, Confidenceand SEN ProvisionSpecialist Schools and Academies Trust (2010)Complex Needs Series, Carpenter, BSpecialist Schools and Academies Trust (2011)Summary of Announced Changes to School Funding,Specialist Schools and Academies Trust40 Good practice in supporting children and young people with autism and complex needs locally Good practice in supporting children and young people with autism and complex needs locally 41

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