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

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