Good Practice in Support Adults With Autism

Good practicein supporting adultswith autism: guidance forcommissioners andstatutory services

Good practice in supporting adults with autism: guidance for commissioners and statutory services

Contents

Summary 3

Purpose 4

What is autism? 5

Multi-agency planning 6• Gloucestershire• Leicestershire & Rutland

Mapping and commissioning 8• Cumbria• Wokingham• Lewisham

Diagnosis and assessment 11• Liverpool• Somerset

Training and awareness 13• Training providers• Cornwall• Surrey• Oldham

Transition 16• Northamptonshire• City College, Norwich• Bath & North East Somerset

Employment 19• Surrey• Goldman Sachs• Autism West Midlands

Supported living options 22• Kingwood Trust• Surrey• REACH

Preventative services and 25social inclusion

• Oldham• Royal Borough of Windsor & Maidenhead

Specialist autism teams and centres 27of excellence

• Nottingham• Greater Manchester

Personalisation and 29self-directed support

• Doncaster• Bury• Coventry

Conclusion 32

Brief review of relevant government 33initiatives

© Published in 2009 by The National Autistic Society; commissioned by the South West Valuing People BoardPhotography: photograph on p8 provided by Mystic Monkey; all other photographs provided by Steve Hickey

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Many adults with autism are unable to accessthe support they need, which leaves themisolated and vulnerable. This lack of timelyappropriate support can result in unnecessarymental health deterioration and reliance onhigh-cost acute services. The right support atthe right time can have a significant positiveimpact on quality of life, outcomes and valuefor money.

Current national initiatives such as theNational Audit Office (NAO) survey1, theAutism Bill and the cross-government autismstrategy present a significant opportunity forlocal areas to address the difficultiesexperienced by adults with autism. Localareas have a responsibility to seize thisopportunity to achieve better outcomes foradults with autism. To facilitate this, it is crucialthat all local areas start by developing anautism planning group (APG) to enableeffective and integrated planning ofappropriate support services for adults withautism across health and social care. Thisdocument, and the progression pathwaybelow, provides guidance to support APGs toimprove the lives of adults with autism.

Level 1(joint working betweenLA & NHS)

Autism-specific planninggroup (APG), including mentalhealth and learning disabilitycommissioners, meets everyquarter to facilitate integratedand effective strategicplanning of local autismservices across health andsocial care

Clear pathway so that adultswith suspected autism canaccess diagnostic servicesand community careassessment

Level 2(strategic planning)

Level 1 +

Strategic planning tools, suchas Joint Strategic NeedsAssessment (JSNA) and thoselinked to Public ServiceAgreement (PSA) 16, areinclusive of the needs ofadults with autism

Training programme in placeto improve competency ofcommunity professionals andmainstream services acrosshealth, social care,employment and housing

Level 3(appropriate support)

Level 2 +

Specialist autism teamappointed. This would:

• provide training andsupport to facilitate goodmainstream practice

• focus on preventativeinterventions, such aslow-cost services andintensive support whereplacement at risk ofbreakdown

• include, for example, asocial worker, psychologist,therapist.


Summary

1 The National Audit Office (2009). Supporting people with autism through adulthood. London: Stationery Office

PROGRESSION PATHWAY FOR LOCAL AREAS TO DEVELOP SUPPORT FOR ADULTS WITH AUTISM(linked to the Strategic Health Authority learning disability self assessment framework)

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Autism has been identified in Valuing peoplenow2 as one of four priority groups that needbetter support services. In addition, autism ishigh on the national agenda as a result of therecently published NAO3 report and theforthcoming cross-government autismstrategy. Whilst it is recognised that someareas are beginning to develop better autismprovision, more needs to be done to improveprovision across the spectrum of need inevery area. These initiatives give not only anopportunity but also a responsibility todo so.

This guide provides commissioners withexamples of good local practice that hasovercome some of the challengesexperienced when trying to develop supportservices to meet the needs of adults withautism. It offers a range of solutions that mayprovide useful templates for local areas to usewhen developing their own provision.The guide may also provide a framework forlocal areas to map their current provision anddevelop an autism action plan to ensure bettersupport for adults with autism.

The South West Valuing People NowProgramme Board has commissioned BenHiggins of The National Autistic Society todevelop this guide and the accompanyingconference. Ben Higgins has a Masters inautism and over a decade of experience insupporting people with autism. He advisesstatutory bodies across the south west todevelop better support for people with autism.The project is overseen by a steering groupthat includes representation from ValuingPeople, the Strategic Health Authority andGovernment Office South West.

2 Department of Health (2009). Valuing people now. London: Department of Health3 The National Audit Office (2009). Supporting people with autism through adulthood. London: Stationery Office


Purpose

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Over half a million people in the UK haveautism. That is one in 100. It is a lifelongdevelopmental disability that affects the way aperson communicates with, and relates to,people around them.

People with autism share three areasof difficulty:

• social communication (eg problems using andunderstanding verbal and non-verballanguage, such as gestures, facial expressionsand tone of voice)

• social interaction (eg difficulties withrecognising and understanding other people’sfeelings and managing their own)

• social imagination (eg problems inunderstanding and predicting other people’sintentions and behaviour and coping with newor unfamiliar situations).

In addition, many people with autism havesensory difficulties, such as beinghypersensitive to certain sounds.

Autism is a spectrum condition, which meansthat while some people can lead relativelyindependent lives, others will requiresignificant support. Although some peoplewith autism have an accompanying learningdisability, the needs of people with autism areoften very different to those with a learningdisability or mental health condition.

The average lifetime cost of supporting aperson with autism is £4 million. The total costof supporting adults with autism in the UK is£25 billion per year4.

This report uses the term autism to describeall autism spectrum disorders and is inclusiveof both Kanner autism and Aspergersyndrome.


What is autism?

Over half a million people in the UK haveautism. That is one in 100.

4 Knapp M, Romeo R. and Beecham J. (2007). The economic consequences of autism in the UK. London: Foundation forPeople with Learning Disabilities.

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It is widely recognised by both theCommission for Social Care Inspection(CSCI)5, now the Care Quality Commission(CQC), and the Department of Health (DH)6

that services are often organised in a way thatprevents people with autism from being ableto access the support they need.Furthermore, adults with autism havetraditionally been neglected in serviceplanning. Many adults with autism experiencea poor quality of life as a result of beingunable to access the support and servicesthey need7.

Health and social care services havecustomarily been arranged to provide care viaspecific teams, categorised by client group.Very few local authorities have anautism-specific team. Most services that offersupport to adults with autism stem fromlearning disability or mental health servicesthat rarely have sufficient understanding ofautism to provide appropriate support to meetpeople’s needs. Autism is a developmentaldisability and many adults with autism will nothave an accompanying learning disability ormental health condition. Many, therefore, fallbetween the gaps created by traditionalservice boundaries as they are not consideredeligible to access support. As a result, manyadults with autism receive no support at alland are left isolated and vulnerable.

Due to the lack of clarity over whoseresponsibility it is to provide support for adultswith autism, all agencies need to meet to planhow to develop local services that bettersupport adults with autism. The developmentof an autism planning group (APG) is essentialto facilitate integrated planning across healthand social care in order to address theinequalities experienced by adults with autismas a result of boundary management issues8.

Effective APGs need to be both multi-agencyand strategic. The chair should be a jointcommissioner across health and social carewith designated responsibility forimplementing the autism strategy. Thesegroups must include:

• family/carers• learning disability and mental healthcommissioners

• relevant local authority and NHS managers• voluntary sector representatives• children and young people’s (CYP) servicesrepresentative.

Adults with autism need support fromagencies outside health and social services,such as housing and employment services.Where appropriate, it is beneficial to invite allsuch agencies to be represented on thegroup. Achieving better outcomes for adultswith autism will require improved joint workingbetween agencies and commissioners9.


Multi-agency planning

5 Commission for Social Care Inspection (2008). Cutting the cake fairly. London: Commission for Social Care Inspection6 Department of Health (2006), Better services for people with an autistic spectrum disorder. London: Department of Health7 Commission for Social Care Inspection (2008). op. cit.8 Department of Health (2006). op. cit.9 The National Audit Office (2009). Supporting people with autism through adulthood. London: Stationery Office

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Gloucestershire ASDPartnership Board

This Board was set up in 2006 followinga needs identification conference, and ismade up of commissioning managers,frontline workers and parents, withrepresentatives from disabilityemployment services, Connexions,further education and housing services.It has also developed good links withCYP services which have representationon the Board. Its focus is on unlockingmainstream agencies in order todevelop better support for adults withautism. The Board’s achievementsinclude implementing a trainingprogramme at a local level, developing aclear pathway to assessment, andidentifying a joint social care/primarycare trust (PCT) lead commissionerresponsible for developing diagnosticservices for adults with autism.

Contact: David GrocottHead of Lifelong LearningGloucestershire County Council

Leicestershire & RutlandASD Planning Group

This multi-agency forum includesrepresentatives from the primary care trust,local authority, learning disability services,mental health services, CYP services, andfamily/carers. The group focuses onstrategic planning to enable fair access toservices for adults with autism. The groupfeeds into other relevant boards includingthe Learning Disability Partnership Boardand Transitions service. Achievementsinclude developing a clear pathway forpeople to access community careassessments, and developing a trainingframework for community professionals.

Contact: Carin DaviesPlanning Officer for Adult Mental Health,Leicestershire County Council


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Autism presents a significant challenge forcommissioners. Not only are more and morepeople with autism being identified, but autismis a spectrum condition presenting a widerange of needs. At the same time local areasneed to commission more preventative, localand personalised models that maximiseindependence and reduce reliance ontraditional service models such asresidential care10.

‘World-class commissioning’ is about reducinginequalities and relies on an analysis of theneeds of the population11. Many localauthorities lack robust data about numbers ofadults with autism who live within their authority.This lack of comprehensive data makes itextremely difficult to plan and deliver serviceseffectively. Mapping and intelligence areessential in order to plan and commission futureservices appropriately. The current lack ofinformation leads to the exclusion of peoplewith autism from the planning andcommissioning process. 86% of localauthorities believe better data about adults withautism would help them plan morestrategically12.

Local authorities’ disability registers shouldidentify the number of adults with autism livingin the area. Local authorities and PCTs thereforeneed to develop effective systems to record thenumber of adults with autism in their area andinclude the needs of adults with autism in theirstrategic planning tools such as JSNA13.

Commissioners need to conduct regular auditsof services in order to determine whethercurrent services are appropriate and havesufficient capacity to meet growing demandand the personalisation agenda. It is beneficialto consult with providers and specialists at anearly stage to be clearer about what services tocommission rather than just involving providersat the tendering stage.

It is best practice to appoint a leadcommissioner who has a good understandingof the needs of adults with autism and who isresponsible for developing an autism-specificcommissioning strategy that takes account ofcurrent and future demand for services.

10 Department of Health (2006). Better services for people with an autistic spectrum disorder. London: Department of Health11 Department of Health (2007). World class commissioning. London: Department of Health12 National Autistic Society (2007). I exist. London: The National Autistic Society13 Department of Health (2009). Services for adults with adults with autistic spectrum conditions. London: Department of Health


Mapping and commissioning

Autism is a spectrum condition presenting awide range of needs

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Providers of services for people with autismneed to consider whether it is appropriate, interms of equality, to set arbitrary cut offs, suchas an IQ level, to determine which people withautism they will support. There are clearbenefits to services of being inclusive andsupporting people across the spectrum.

Better outcomes for people across the wholeautism spectrum could be achieved by greaterawareness in strategic planning andcommissioning and better knowledge amongthose responsible for assessing and meetingthe needs of people with autism14.



Cumbria mapping

Cumbria conducted two mappingexercises (in 2003 and 2006) whichhighlighted the growing numbers of peoplewith autism known to adult services anddue to leave school in the near future. In2007 Cumbria produced the Are we ready?report which recognised that ‘appropriateservices need to be developed to be ableto cope with the demand of this increaseand that all policies and procedures areinclusive of ASD.’ As a result, in April 2009it introduced a method of recording autismon the social care register. With thisimproved data and intelligence the localauthority and PCT will be more effective inthe planning of future services. Cumbria isin the process of developing an adultautism strategy. A survey of adults withautism has helped identify local prioritiesfor service development, including trainingand social support, and a draft strategydocument identifies existing services inCumbria and the gaps in those services.The area is currently working to set outspecific actions to improve these services,and to promote the independence andinclusion of people with autism.

Contact: Marion JonesAutism Planning OfficerCumbria County Council

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It is best practice to appoint a leadcommissioner who has a good understandingof the needs of adults with autism and who isresponsible for developing an autism-specificcommissioning strategy that takes account ofcurrent and future demand for services.

Providers of services for people with autismneed to consider whether it is appropriate, interms of equality, to set arbitrary cut offs, suchas an IQ level, to determine which people withautism they will support. There are clearbenefits to services of being inclusive andsupporting people across the spectrum.

Better outcomes for people across the wholeautism spectrum could be achieved by greaterawareness in strategic planning andcommissioning and better knowledge amongthose responsible for assessing and meetingthe needs of people with autism14.


Lewisham

Lewisham local authority hasconducted a detailed needs analysisof adults with autism, includingthose who are currently not eligiblefor services or have unmet needs.Data was pulled together fromstatutory and voluntary partners.The process highlighted that themajority of people with autism in theborough were not known toservices, and the data was used topredict future service capacity andinform commissioning priorities. Theprocess pointed to the need forclearer care pathways, includingaccessing community careassessments. The process alsohighlighted other key needs,including life skills training, socialopportunities, employment supportand housing. This analysis will feedinto the JSNA. Lewisham adultsocial care has developed a clearreferral pathway for adults withautism who do not have a learningdisability.

Contact: Sadie KingCommunity Services OfficerLewisham Council

Wokingham

Wokingham Learning DisabilityPartnership Board set up an autismsub-group in 2006. The group identifiedthat local services were both inadequateand inappropriate for meeting the needsof adults with autism: this resulted inreliance on out-of-area placements, oftensome distance away and at considerableexpense. The autism sub-group securedfunding to support a 30-month project toidentify needs and work with thevoluntary and community sector (VCS) todevelop a borough autism strategy todevelop better and more appropriatelocal arrangements that result in betteroutcomes for adults with autism. Thestrategy was published in May 2009.

Key findings include:• a widespread lack of understanding

of autism• significant gaps in employment, health

and social care support services

Key recommendations include;• establish an autism spectrum

disorder (ASD) team• improve the availability of

preventative services• develop and deliver an ASD

training programme• improved housing provision and

employment support.

Contact: Robert PasterfieldAutism Project WorkerWokingham Mencap

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Many adults with autism struggle to get adiagnosis: without a diagnosis it is very hard forthem to get the support they need. Althoughaccess to support services should be basedon need not dependent on a diagnosis, inpractice this is often not the case. Having aformal diagnosis can also help peopleunderstand their difficulties and where theyneed support. In the absence of effective localdiagnostic pathways, many people are forcedto travel long distances and often payconsiderable sums to get a diagnosis.Diagnostic provision needs to improveconsiderably so that people can access thesupport they need. General practitioners (GPs)need a better understanding of autism toenable them to screen people for the conditionand know when to refer to a specialist fordiagnosis. Commissioners should ensure thatadults with suspected autism can access localdiagnostic services in line with Royal College ofPsychiatrists recommendations.

Because autism is so complex, specialistdiagnostic services are required to diagnose it.Local diagnostic teams need specialist trainingin the use of diagnostic tools such as DISCO(Diagnostic Interview for Social andCommunication Disorders), ADOS (AutismDiagnostic Observation Schedule) or ADI-R(Autism Diagnostic Interview – Revised).Further information is available at:www.autismresearchcentre.com. It is bestpractice to be trained in a variety of diagnostictools to facilitate an eclectic approach.Post-diagnostic support rarely exists – there isan urgent need to develop a clear pathway tothis as well as diagnosis.

Community care services are provided tovulnerable members of society to help themlive as independently as possible. All vulnerableadults have the right to a community careassessment from their local authority. Despitethis, less than a quarter of adults withhigh-functioning autism have received acommunity care assessment. Whether autismis considered a developmental condition,learning disability or mental health problem isnot relevant to being able to access anassessment of need. Local authorities urgentlyneed to clearly identify which team isresponsible for ensuring assessments of needare carried out in a timely manner.


Diagnosis and assessment

It is essential that professionals carrying outcommunity care assessments have a goodunderstanding of the wide range, and oftenhidden, needs of adults with autism.

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Evidence from the CSCI17 review ofeligibility criteria showed that adultswith autism are at risk from beingexcluded from accessing communitycare under the Fair access to careservices (FACS)18 guidance. As aresult, the Department of Health andCQC are reviewing this guidance.

Many professionals carrying outcommunity care assessments lack anunderstanding of the wide range, andoften hidden, needs of people withautism. People with autism find it hardto communicate effectively. They canappear independent, yet in realityrequire significant support in manyaspects of their daily lives. It isessential that professionals havereceived suitable training in order tounderstand the needs of adults withautism before carrying out FACSassessments. It is vital thatfamily/carer needs are assessed aswell as the person with autism.

17 Commission for Social Care Inspection (2008). Cutting the cake fairly. London: Commission for Social Care Inspection18 Department of Health (2003). Fair access to care services. London: Department of Health

Liverpool

The Liverpool autism team was established in 2003and is a highly regarded specialist diagnostic,assessment and intervention service funded byMersey Care NHS trust. The team has eight ‘core’members and works with a wide range of otherprofessionals. It is run by a speech and languagetherapist and includes a social worker, clinicalpsychologist and nurse. The team has assessedover 300 people in the last five years, and over 250met the criteria for diagnosis. Only 33 already had adiagnosis. The wider network includes a specialistservice for people involved in the criminal justicesystem. The team also delivers a significant amountof training to other services and professionals.

Contact: Chris AustinHead Speech & Language TherapistMersey Care NHS Trust

Somerset Partnership Trust

The Somerset Partnership Trust set up aconsultancy service in 2005 to provide a diagnosticservice, consultancy, training and preventativesupport. The county-wide team includes socialworkers, a clinical psychologist, communitypsychiatric nurse and occupational therapist.The local community mental health team referseligible people to the service, which has receivedover 300 referrals in the first four years.

Contact: Pat O’ConnellTeam ManagerSomerset Partnership Trust


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Many of the difficulties that adults with autismexperience are the result of poorunderstanding of autism within local services.Community professionals and front line staffrequire good quality training appropriate to theamount of interaction they have with peoplewith autism. All those who come in contactwith people with autism should have receivedat the very least basic awareness training.Those who work primarily with or championthe needs of people with autism require morespecialist input.

There is a need to develop the understandingand competency of community professionalsworking in a range of agencies so that theycan respond appropriately to the needs ofpeople with autism. They include:

• health service practitioners (eg GPs,community psychiatric nurses, occupationaltherapists)

• social care (eg social workers, managers,community teams, assessors)

• further education (eg lecturers, learningsupport staff)

• employment (eg disability employmentadvisors, Connexions staff, employers)

• the criminal justice system (eg police officers,prison officers).

Currently, GPs lack the competency to screenfor autism in order to refer people for adiagnosis accordingly. Many FACS andcommunity care assessors lack understandingof the needs of adults with autism and the typeof support they may require. Few disabilityemployment advisors have adequateunderstanding of the skills and needs of adultswith autism. Many criminal justice professionalsfail to make reasonable adjustments whenengaging with people with autism.

It is essential that good quality autism trainingis available to relevant communityprofessionals. Some areas are developing localhubs of expertise which can provide training tocommunity professionals from mainstreamuniversal services. Others are pooling funds todevelop a framework and the capacity toprovide training. Wherever possible, thetraining should be accredited by anindependent third party or university.


Training and awareness

It is essential that good quality training isavailable to relevant community professionals.

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Cornwall training coordinator

As a result of a consultation event withfamilies and individuals affected byautism, Cornwall commissioned aconsultant from The National AutisticSociety to make recommendations todevelop provision for adults with autism.Cornwall has started to implement theserecommendations by developing anautism planning group and poolingfunding from health and social care tofund a training post. This post isresponsible for delivering training to awhole range of community professionalsincluding health, education, social care,employment and the criminal justicesystem, so that they can respond moreappropriately to the needs of peoplewith autism.

Contact: Nick FrippHead of Transformation of LearningDisability ServicesCornwall County Council

Training providers include:

ASpire, SussexAsset, DevonAutism West MidlandsBath UniversityBirmingham UniversityThe National Autistic SocietyOpen UniversityPrime Performance SolutionsPriors CourtSheffield Hallam University


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Surrey autism project

The local authority in Surrey developed acounty autism group with representativesfrom social care and health services forchildren and adults, independent sectorproviders and family carers of people onthe autism spectrum. This group has usedlearning disability development funding tocarry out a detailed consultation andgathered data about adults on the autismspectrum known to statutory services, andhas used this to project future demand forservices. This has enabled Surrey CountyCouncil to develop a commissioningstrategy for adults with autism.

Surrey has developed an autism trainingpathway for health and social care staff,starting with basic awareness, and leadingthrough to more specialist courses. Surreyhas also developed a network of autismchampions in services in all sectors in thecounty. Champions receive six months ofmentoring and training, then cascade thetraining to their teams. There are currentlyover 60 champions in services acrossthe county.

Contact: Tom MooreProject ManagerSurrey County Council

Oldham

As a result of a high level ofcommitment from directors, Oldham isnow regarded as a leading authority forautism provision. The way forwardgroup is a multi-agency planning groupmade up of mainstream services thatsupport people with autism, includingeducation, employment and housing.The group, which feeds into the GreaterManchester Consortium, has beeninstrumental in developing bettersupport for people with autism.

There has been significant investment ina multi-tier training framework. Trainingis provided not only to those whosupport people with autism but alsothose carrying out assessments andother professionals who may come intocontact with people who have autism.Many of Oldham’s services, includingsupported tenancy, have gained autismaccreditation. The authority runsnational conferences to promotegood practice.

Contact: Wendy AtkinsonAutism Development WorkerOldham


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People with autism can find change verydifficult and are often unable to visualise whatlife might be like in the future. Transition fromchildren’s to adult services is a particularlytraumatic time for young people withautism and is often associated with high levelsof anxiety.

The Transition Information Network (TIN)19 hasidentified five underlying principles of goodpractice in facilitating effective transitions:

• full participation of young people andtheir families

• comprehensive multi-agency engagement• provision of high quality information• effective transition planning• an array of opportunities for living life.

Autism impacts across a range of agenciesand therefore effective multi-agency working iscentral to the smooth transition of youngpeople with the condition. Local authoritiesneed to develop clear protocols identifying theresponsibilities of each agency in theirtransition process. Transition plans mustidentify their future needs across differentagencies, including employment, housing andsocial care.

Significant problems have often been causedby poor information-sharing betweenchildren’s and adult services. Local authoritiesneed to know how many young people withautism are leaving school over the next fiveyears and the type of support they are likely toneed in order to plan and commissionaccordingly. This data should be included inthe JSNA.

The young people with autism and theirfamilies must be fully involved in the planningprocess for this transition. It is good practiceto develop a person-centred transition planthat identifies the young person’s aspirations,and to provide support to help them achievethose aspirations. However, people withautism may find it hard to either visualise orexpress their aspirations and may require thesupport of a skilled advocate. It is alsoessential that Connexions’ advisors havesufficient training to provide appropriatesupport to young people with autism.At transition there are often several agenciesfrom both CYP and Adult services involved.Commissioners should ensure each youngperson has a lead professional responsible forliaising with services and guiding them thoughthe transition process.


Transition

19 Transition Information Network (2009). TransMap: from theory into practice. London: Council for Disabled Children.Available to download from www.transitionsupportprogramme.org.uk/resources/toolkits.aspx [Accessed 20/08/2009]

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Learners with autism often experiencesignificant barriers in accessing furthereducation (FE) provision. Within a busymainstream college learners with autism willrequire quiet areas they can access whenanxious. Support staff require a goodunderstanding of autism to respondappropriately to the needs of learners. It isgood practice for colleges to employ anautism specialist support worker who is basedin feeder schools for the final phase of thestudents’ school education and who thensupports their transition to college during thefollowing academic year.

College placements should involve meaningfulprogression, improving the young person’sopportunities to move towards independentliving and gain paid employment in line withLearning for living and work20. This may meansetting up a house or suitably equipped roomswithin the college where young people canlearn independent living skills, or providingspecific courses on social skills,communication skills or emotional regulation.It is essential, too, that young people have theopportunity to gain work experience throughtheir college in order to be better preparedfor work21.

Whilst many young people with autism benefitfrom attending college, it is important not tomake assumptions about what may seem tobe a logical next step for them. At transitionthe young person should have a genuinechoice of options available. Local areas needto provide a range of opportunities for youngpeople with autism including support intoemployment, supported living schemes andappropriate FE provision. The provision ofgood quality and accessible information aboutthe options available is an essential part ofempowering the person to have choice andcontrol over their future.


20 Learning Skills Council (2006). Learning for living and work. Coventry: Learning and Skills Council21 Department of Health (2009). Valuing employment now. London: Department of Health

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Northamptonshire transitionliaison team

Northamptonshire Healthcare NHS Trustfunds a transition liaison team to supportindividuals who may otherwise struggle toaccess support when transitioning fromCYP services to adult services. The teamworks closely with other services includinglearning disability, mental health, housing,employment, social care, health, Connexions,further education and the voluntary sector.The team reduces inequalities and increasesopportunities available to young people withautism.Contact: Anthony DaySEN Coordinator, Connexions

RUG room, City College Norwich

The Rug room is a Beacon Award winningresource for students with autism at CityCollege, Norwich. It is a quiet safe haven fromhectic college life that includes a smallkitchen, IT facilities, and specialist supportstaff. The centre offers programmes andsupport which will help them to reach theirpotential and to contribute to the communityin which they live. The centre, funded by theLearning and Skills Council (LSC), reducesreliance on out-of-area placements.rugroom.net offers a learner-based websitefor young people with autism to communicatewith on another.Contact: Dr Danusia LatosinskiProgramme Manager, Foundation StudiesCity College Norwich

Bath & North East Somerset(BaNES)

BaNES local authority has developedsupported living options and apathway to gain employment foryoung people with autism leavingFosseWay School and NortonRadstock College. BaNEScommissioned a housing providerand The National Autistic Society todevelop appropriate housing andsupport respectively so that theyoung people with autism leavingFosseway school could choose tolive locally rather than relying onplacements far from the family home.BaNES has also developedemployment opportunities for youngpeople with disabilities. As a resultFosseWay School is using ProjectSearch to help secure jobs for youngpeople with autism leaving theschool. Project Search is an exampleof a school-to-work programme thatis very inclusive of people withautism. The scheme provideswork-based learning throughinternships for 12 students. It isbusiness led (benefits includereduced recruitment costs andincreased retention rates). One inthree go on to secure long-term paidemployment with the host business.Contact: Mike MacCallamJoint Commissioning ManagerBath & North East Somerset

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People with autism are an undiscoveredworkforce. They have skills that are keenlysought after and, with the right support, theycan make a valuable contribution in theworkplace. For example people with autismare generally honest, conscientious, andreliable with excellent rote memory andattention to detail. Many are highly competentat repetitive and logical tasks including dataentry and IT support. Furthermore, peoplewith autism may have special interests thatcan easily be developed into an employableskill. Employment helps people with autismfeel valued by society and results in significantpsychological and social benefits.

However, only 15% of adults with autism arein paid employment compared to 48% ofpeople with general disabilities22. A muchgreater number of people with autism want towork and could do so if able to accessappropriate support. Autism specialistsupported employment schemes result insignificantly higher rates of employment aswell as employer and employee satisfaction,compared to generic disability employmentservices23. There are clear benefits of workingcollaboratively with neighbouring authorities todevelop a sub-regional autism coordinator,working in a similar way to mental healthcoordinators, within Jobcentre Plus.

Although support to find and sustain workshould be available to all people who requireit, some people with disabilities are not able toaccess appropriate support. For example,very few government-funded schemes benefitpeople with autism seeking employment.Government priority PSA 16 aims to increasethe proportion of socially excluded adults inemployment, including those with learningdisabilities or mental health conditions.Although people with autism are often bothsocially excluded and keen to secureemployment, there is a risk that suchstrategies will again neglect them. Localmulti-agency employment strategies, linked toPSA 16, must start to be more inclusive ofpeople with autism.


Employment

People with autism have skills that arekeenly sought after and, with the rightsupport, they can make a valuable contributionto the workplace.

22 Department of Health (2009). Valuing employment now. London: Department of Health23 The National Audit Office (2009). Supporting people with autism through adulthood. London: Stationery Office

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The Disability Discrimination Act (DDA)24

protects people with disabilities fromdiscrimination in employment. It requiresemployers to make reasonable adjustments toaccommodate the disadvantages suffered bypeople with disabilities. The recruitmentprocess, however, often discriminates againstpeople with autism. It is important for bothemployers and disability employment advisors(DEAs) at Jobcentre Plus to know that peoplewith autism would benefit from being offeredan alternative to a traditional interview, such asa work trial. DEAs unfortunately have rarelyreceived sufficient training to know how tosupport adults with autism. It is vital thatgovernment supported employmentprogrammes aimed at helping disabled peopleto overcome the barriers to gaining andmaintaining employment, have the expertiseto support people with autism.

Supported employment often involves notonly supporting the individual, but alsosupporting the employer to make reasonableadjustments in recruitment and in theworkplace, as well as raising awarenessamong work colleagues. A betterunderstanding of autism will help employersto recognise how people with autism canmake a valuable contribution in the workplaceand challenge the traditional perspectivebased on individual limitations. This helpsraise the profile of people with autism withinlocal businesses as well as match individualsto suitable roles. Job descriptions, too can becustomised to match parts of different jobs tosuit the skills of a person with autism and inorder to provide a cost effective solution forthe employer. Ultimately, this would improveaccess to employment and enable manyindividuals with autism to become moreeconomically independent.


24 The Disability Discrimination Act 2005 (c.13). London: HMSO


Surrey’s autism planning group hasused learning disability developmentfunding to facilitate the development fora commissioning strategy for adults withautism (see also p15, Training andawareness section).Surrey’s EmployAbility supportedemployment service has developedexpertise and specialism in supportingpeople on the autism spectrum.

It is working towards Autism Accreditation,and has established a project combiningautism specialist social skills training withwork trials and supported employment.At the time of a recent spot check,EmployAbility was actively working with 89people on the autism spectrum. Of these,35 had been supported to find paid workand 17 were in unpaid work.

Contact: Tom MooreSurrey County Council

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Goldman Sachs transitions project

Over the last six years the investment bankGoldman Sachs has been working in partnershipwith The National Autistic Society’s Prospectsemployment service to offer paid placements toadults with high-functioning autism. The firm’smission statement asserts: ‘we CAN make adifference... The aim of the Asperger syndromeinitiative at Goldman Sachs is to make a positiveimpact on the lives of people who have little or noexperience in the workplace. We can help them toachieve their highest potential, as they interactwith colleagues and grow to become moreconfident and competent in their abilities, througha programme of interaction, communication andpersonal experiences.’ The programme has given26 people so far the chance to acquire extendedwork experience of whom five secured permanentemployment via the programme. All the otherswent on to secure full-time jobs elsewhere, largelyon the basis of the experience gained there withsupport from the autism specialist supportedemployment service. There are currently 12 internsworking in the London office. It has also, accordingto Richard Bremer, a knowledge manager atGoldman Sachs who champions the programme,enabled the firm to gain very capable and effectiveemployees, raised the company’s awareness ofdiversity and enabled managers to learn how tocommunicate more effectively and adapt theircommunication style to meet the needs of others.Goldman Sachs is a gold card member of theEmployers Forum on Disability.

Contact: Richard BremnerKnowledge ManagerGoldham Sachs

Aspire, Autism West Midlands

ASpire is a specialist servicefor people with autism spectrumdisorders (ASDs), typicallythose with a diagnosis ofhigh-functioning autism. ASpirewas established in 2001 inresponse to a gap betweenservices and need identified bystakeholders in the WestMidlands, including people withautism, parents and carers, DEAsand work psychologists. It aims tobreak down the significantbarriers facing people with autismin accessing work and sustaininga job. Support programmes aretailored to individual need and arebased on good practiceapproaches to ASDs. The servicehas a Department for Work andPensions work preparationcontract, supporting people toaccess a range of route maps toemployability through practicalsupport, advice and guidance;develop employability skills andgain practical experience; andfind a job and sustainemployment.

Contact: Claire FennelAspire CoordinatorAutism West Midlands

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Almost half of adults with autism over 25continue to live in the family home and overhalf are dependent on their parents forfinancial support. This is a cause ofconsiderable concern for family carers as theygrow older as they worry about who will lookafter their dependents in the future. Too manyadults with autism are unable to access thespecialist support appropriate to their needsthat would enable them to live moreindependently. Very few adults with autismhave sufficient choice and control over wherethey live, the type of housing or the supportthey receive.

As it is a spectrum disorder, adults withautism require a range of different housingoptions from fully independent (with somesupport), to clusters of bedsits with communalareas, to small group homes. Unfortunately,many adults with autism continue to beplaced in traditional, large residential servicesdue to lack of alternative provision. Oftenthese are people with severely debilitatingsensory, perceptual and social difficulties forwhom such an environment is highlyinappropriate. Out-of-area placements resultin lack of investment in local services, which inturn results in further reliance on out-of-areaplacements.

Housing Options, a charity which giveshousing advice to people with a learningdisability, estimate that the currentshortage of housing for adults with autism inthe UK is in excess of 10,000 homes. TheSupporting People programme offersvulnerable people the opportunity to improvetheir quality of life by providing high quality andstrategically planned housing-related serviceswhich enable greater independence. Localhousing strategies therefore need to be moreinclusive of the future housing needs of peoplewith autism.


Supported living options

This cartoon by an adult with autismdemonstrates the importance of meeting anindividual’s sensory needs.

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When people with autism are placed in thewrong environment it can cause them extremeanxiety and result in increased support needs.It is essential that the location of a person’shome reflects their individual needs andpreferences. The house itself is likely to requireadaptation to meet their needs. Homes forpeople with autism often require considerationof sensory sensitivity to certain sounds, lights,colours and smells.

As well as sympathetically designed housing,adults with autism will require varying levels ofsupport. Supported living involves housingand support being offered by separateproviders so that the person with autism willnot need to move house even if there has tobe a change in support provider. All staffproviding the support should have goodunderstanding of the often hidden needs ofadults with autism. Appropriate support for anadult with autism from a skilled personalassistant may only be needed for a few hoursa week. The kind of help required ofteninvolves tasks such as tidying the home,form-filling, phone calls and regular financialmanagement.


Kingwood Trust

The Kingwood Trust is a charity set up in1994 by the parents of a young manwith autism. It is a specialist supportprovider working with 50 people withautism, particularly those withcomplex needs, who mostly live in theirown homes in Oxfordshire andneighbouring counties.

Kingwood recognises that all people,regardless of ability or background, canbe active and contributing members ofthe community. The Trust aims to helppeople with autism to live the lives theychoose. This means finding ways oflearning what matters to them; whatthey want to do, and then helping themto make this happen. Well-trainedsupport staff ensure that the peoplethey support have access to thebroadest range of choices, and help inovercoming the barriers associated withtheir condition.

Kingwood also undertakes actionresearch, and pioneers best practice inresponse to the changing and complexneeds of people with autism which itthen disseminates nationally to assistothers working in the field.

Contact: Sue OsbornChief Executive OfficerKingwood Trust

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Surrey’s autism planning group hasused learning disability developmentfunding to facilitate the development fora commissioning strategy for adults withautism (see also p15, Training andawareness section).

The commissioning strategy includesdeveloping new autism spectrum specialistsupported living services each year from2008 to 2016. In 2008, the processdeveloped services for 16 people.Feedback from people living in the servicesand their family carers has been verypositive. Significant numbers of adults withautism funded by Surrey County Counciland Primary Care Trust (PCT) had beenplaced out of county in order to find aservice that could meet their needs. Surreyis now successfully developing localservices which aim to improve outcomesfor people with autism.

Contact: Tom MooreSurrey County Council

REACH supported living

REACH is a not-for-profit organisationthat supports people in their ownhomes, so that they can lead the livesthey choose as independently aspossible. It recognises that people withautism require specialist support by staffwho understand the implications ofautism and the challenges it may bring,and believes that people are often ableto live in ordinary housing, provided theyhave appropriate support. Theorganisation aims for a person-centredapproach that focuses on how a personwants to live their life. REACH currentlyprovides supported living to people withautism in Swindon.

Contact: Judith NorthChief Executive OfficerREACH

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It is widely recognised that people with autismare often unable to access the support theyneed and specialised services for adults withautism are few and far between. Many adultswith autism fall through a gap betweenlearning disability and mental health services,and only access the latter in the form of costlyand acute interventions if they subsequentlydevelop mental health problems, which maybe brought on by depression and socialisolation associated with their autism25. Highlevels of secondary mental health difficultiesare indicative of a lack of preventative support.Without the support to cope in a society thatfails to understand their needs, adults withautism experience high levels of stress,anxiety, depression, and the risk of psychiatricbreakdown. A lack of timely support can oftenlead to greater support needs and moreintensive intervention in the longer term, and istherefore poor practice and very expensive.Appropriate, timely support can have aprofound impact on quality of life.

Better outcomes can be achieved byinvesting in carefully targeted, low-cost, earlyintervention services. Such services aredesigned to reduce the levels of stress andalleviate social isolation commonlyexperienced by adults with autism. Byintervening when service users have a lowlevel of need it is possible to reduce thechances of mental health deterioration oreven unnecessarily entering the criminaljustice system.

Low-cost early intervention and preventionservices aim to reduce the need for high-costacute support associated with crisismanagement services in the longer term. Withappropriate circles of support, many adultswith autism are able to live relativelyindependently in the community, requiring onlylow-intensity services. Without such support,there is increased risk of social exclusion andof mental illness26. Three quarters of localauthorities report preventative services havinga positive impact on outcomes (Association ofDirectors of Adult Social Services, 2008). Thedevelopment of better preventative servicesand joint working between health and socialcare is in line with Our health, our say GreenPaper27. Commissioners need to startinvesting in preventative services and reducingreliance on crisis management in order toachieve better value for money and betteroutcomes for adults with autism.


Preventative services and social inclusion

With appropriate circles of suppport, manyadults with autism are able to live relativelyindependently in the community, requiring onlylow-intensity services.

25 The National Audit Office (2009). Supporting people with autism through adulthood. London: Stationery Office26 Ibid.27 Department of Health (2006). Our health, our say. London: Department of Health

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Many adults with autism aresocially isolated. Local authoritiesshould invest in services that aimto tackle the social exclusionamong people with autism. Forminimal cost, it is possible toprovide weekly socialopportunities based aroundcommon interests and structuredactivities, such as a pub quiz. Thiscan help reduce social isolationand may also help to reduce riskof depression commonlyassociated with autism. Localauthorities also need to fundsocial skills training courses foradults with autism. Social skillstraining, social groups, andbuddy schemes are allcost-effective preventativeservices that can prevent theneeds of people with autismescalating to a point where moreserious intervention is required.

Research by Luke Beardon28

identifies that the services mostrequested by adults withhigh-functioning autism are(in order):

• support in employment• support getting appropriateaccommodation

• accessing social skills training• counselling (eg CBT)• accessing diagnostic services• social groups.

28 Beardon L and Edmonds G. (2007). ASPECT consultancy report. Sheffield : Autism Centre, Sheffield Hallam University

Oldham

The work of the Oldham multi-agency group has resulted inOldham now being regarded as a leading authority on autismprovision (see also p15, Training and awareness section)Oldham has invested in a range of low-cost preventativeservices such as buddy schemes and several socialgroups, and has developed a vulnerable adults team tosupport those that do not fit the remit of other teams suchas mental health or learning disability teams. Many ofOldham’s services, including supported tenancy, havegained autism accreditation.

Contact: Wendy AtkinsonAutism Development WorkerOldham

Royal Borough of Windsor & Maidenhead (RBWM)

RBWM developed a specialist post to conduct a datacollection and needs analysis. There was particular focus ondetermining the number of adults with autism in the areawho were not receiving appropriate support services.Serious gaps were identified in employment and housing.The survey also identified the need for a specialist service.As a result, RBWM developed a specialist team to workwith people on the autism spectrum, guided by a steeringgroup. The team runs drop-ins, social groups, and trainingand support for those who had previously not been eligiblefor services, as well as working with commissioners toensure appropriate services are developed. RBWM is nowone of a small number of authorities to have detailed dataon adults with autism in their area. This has had a significantand positive impact on services for adults with autism inthe borough.

Contact: Allan BrownDirector of Adult ServicesRBWM


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An increasing number of areas aredeveloping specialist autism teams (SATs)that provide local specialist expertise tomainstream services. The NAO recognisesthat in addition to improving outcomes forpeople with autism, SATs are oftencost-neutral and may result in significantcost savings by preventing the need formore acute services29. Furthermore, thosesupported by a specialist service are oftenable to live in more independent andcost-effective housing30. The national cost toprimary care trusts (PCTs) and localauthorities (LAs) of developing specialisthealth and social care services would be£40m. However, this could result inimproved outcomes and savings of over£150m, based on evidence from theLiverpool Autism Team31.

Best practice involves joint funding by thePCT/NHS and the LA. For example, the localauthority funds a registered social worker,training coordinator, and autism employmentadvisor and the PCT funds a clinicalpsychologist, therapist and communitypsychiatric nurse. It is estimated that boththe LA and the PCT would need to investabout £120k each to develop a SAT tosupport a population of half a million. Manyareas, including Liverpool, Somerset, Bristol,Nottingham, Kingston, Dorset and the RoyalBorough of Windsor & Maidenhead, aredeveloping specialist teams.

Those with the most complex needs arecurrently often placed furthest from theirfamily home. This may contribute to theiremotional trauma and be detrimental to theirwell-being. It is possible to preventsignificant numbers of high-cost out-of-areaplacements by developing more appropriateand specialist provision within the authority.Out-of-area placements result in lack ofinvestment in local services and in increasingfuture reliance on out-of-area placements.Commissioning is not only about fundingservices but also about investing in the localcommunity. Professor Mansell’s report32

highlights the need to develop specialistservices locally that can directly serve asmall number of people with the mostchallenging needs as well as support goodmainstream practice. There is a need tointegrate multi-agency services in order toprovide more local, flexible and coherentpackages of support for those with the mostcomplex needs.

Sub-regional centres of excellence canprovide a collaborative approach by pullingtogether services and expertise across localstatutory agencies and the voluntary sector.


Specialist autism teams and centres ofexcellence

29 The National Audit Office (2009). Supporting people with autism through adulthood. London: Stationery Office30 Ibid.31 Ibid.32 Department of Health (2007). Services for people with learning disabilities and challenging behaviour or mental health needs.

London: Department of Health

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They involve developing ahub of expertise, based incommunity/non-clinicalenvironments, central towhich are the SATs, andwhich can offer:

• training to facilitate goodmainstream practice

• diagnostic and assessmentservices for those withcomplex needs

• specialist consultancy andintensive outreach supportwhere placement is at riskof breakdown (to preventout-of-area placements)

• delivery of a range of low-level preventative services(such as social opportunitiesto reduce risk of mentalhealth deteriorationassociated with socialisolation)

• courses specifically foradults with autism, such associal skills andindependent living

• drop-in advice, signpostingand brokerage support toadults with autism.

Larger authorities will needto develop their own teamsand centres of expertise,whereas clusters of smallerauthorities would benefitfrom working together foreconomies of scale.


Nottinghamshire

Nottinghamshire PCT and LA recognised the needs of peoplewith autism in their adult health and social care commissioningstrategy. Both Nottinghamshire healthcare NHS trust andNottinghamshire adult social care departments haveestablished specialist teams to support adults with autism.The health team includes a clinical psychologist, occupationaltherapist and speech and language therapist. It focuses onmulti-disciplinary diagnostic assessment and post-diagnosticsupport. The social care team, made up of five social care staff,provides specialist assessment, care management and short-term interventions. The team also provides social and emotionalsupport and assistance with employment and accommodation.The team is able to offer community care assessments byassessors who have a good understanding of autism.

Contact: Chris MitchellTeam ManagerNottingham County Council

Greater Manchester Consortium

The Greater Manchester Autism Consortium is the country’sbest example of strategic regional working. It enables the tenLAs in Greater Manchester to share knowledge in order tobetter inform the strategic planning and commissioningprocess. Each LA in the consortium has set up its own autismservices development group. Each LA pays a tenth of theoverall costs which fund a project officer, a part-timeinformation officer, and an administrator who provide familysupport, information and a signposting service. The team alsosupports each LA to develop better support services for allpeople with autism in their area through the development ofgroups, training programmes, diagnostic pathways and low-cost preventative services.

Contact: Debbie WatersProject OfficerThe National Autistic Society

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Putting people first33 aims to transform adultsocial care through the personalisationagenda. Personalisation aims to improvepeople’s quality of life by empowering them,so that they have greater choice and controlover their lives and the support that theyreceive. It is about tailoring support to meetindividual needs and aspirations as opposedto matching individuals to services on thebasis of availability. The current process ofreforming health and social care provision,with greater emphasis on personalisation,presents a good opportunity to help peoplewith autism obtain more appropriateservices. The development of effectivepersonalised support has the potential tohelp address many of the issues highlightedin previous chapters.

More transparent allocation of resources, inthe form of individual budgets, is at the heartof personalising support. Self-directed supportenables individuals to design their ownsupport and the services they need. By April2011 authorities are required to offer individualbudgets to at least one third of people, withmany authorities targeting a majority ofpeople eligible for support by 2011.However, so far very few people with complexneeds (including autism) are receivingindividual budgets.

The allocation of appropriate funds toindividual budgets is central to its success.

The amount of money allocated must besufficient to meet eligible needs. There aresignificant concerns that specific groups ofvulnerable people do not meet the eligibilitycriteria to access adequate funding to fulfiltheir potential and maximise quality of life.Local authorities must ensure their ResourceAllocation System (RAS) adequatelyrecognises the needs of adults with autism.

There are several cases where self-directedsupport had been working effectively until,unfortunately, individual budgets weredecreased. This reduction in funding availableis clearly unacceptable: individual budgetsmust be sufficient to purchase good qualityand good value support as opposed to thecheapest available which may well not beappropriate to meet individual needs.


Personalisation and self-directed support

33 Department of Health (2007). Putting people first. London: Department of Health

People with autism often find it hard toarticulate their aspirations and therefore mayrequire brokerage to assist them in developinga support plan and procuring the services toimplement it.

30

If personalisation is to achieve its core aims,it is essential that those being offered directpayments are aware of alternatives, such astrust funds, and can access advice andsupport. People with autism often find it hard toarticulate their aspirations and therefore mayrequire a broker who can assist them indeveloping a support plan and then procuringservices to implement it. Supporting people totake control of their funding through brokerageis central to the success of self-directedsupport. Local authorities need to consider howbrokerage will be funded and how to ensurepeople with autism can access this supportdirectly or through a social worker. Brokersmust be registered and independent of theresponsibility of rationing or allocatingresources. Agencies that historically providelocalised information, advice and advocacy arewell placed to develop brokerage.

There are further concerns that people arechanging over to direct payments not as apositive choice, but because traditional servicesare failing to meet their needs. Direct paymentsonly work when there is a sufficient range ofsupport options for people to choose from.Local authorities must stimulate the market toensure there is a range of appropriate supportservices for people with autism to choose topurchase. Whilst individual budgets represent asignificant opportunity for the third sector, it alsoinvolves vulnerability in the transition from blockcontracts to spot purchasing in a competitivemarket place. Local authorities will need toensure that personal assistants, employeddirectly by the individual, are both available andhave received adequate training in autism.


Doncaster community adult autismteam (CAAT)

Doncaster’s CAAT is helping people onthe autism spectrum to be independentby reducing reliance on home caresupport. The team was set up as part ofDoncaster Council’s implementation ofindividual budgets, whereby serviceusers receive funding following anassessment of their needs. Through theCAAT, service users are in control ofdeveloping their own unique supportpackages. By intervening whenservice users have a low level of need,the CAAT hopes to use creativeresponses to reduce the chances ofadults with autism unnecessarilyentering mental health services or thecriminal justice system.

Contact: Joan BeckHead of Disability ServicesDoncaster City Council

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Coventry individual budgets pilot

As part of their individual budgets pilot,and now central to their approach todelivering personalisation, Coventryhas adopted an outcome-focusedapproach to conducting assessmentsin place of self assessmentquestionnaires. Instead of starting withneeds and risks it starts with outcomespeople want from their lives. Theapproach is possibility-focused, lookingat people’s aspirations, rather thanbeing problem-focused. Their localevaluation suggests personalised andoutcome-focused procurement (notRAS) is more likely to promoteindependence as it focuses ongoals people hope to achieve.The assessment process is morelabour-intensive but improves outcomesfor the individual, and the improvedrelationships with the people who usetheir services and their carers makereviews simpler.

Contact: Andrew ReecePhysical Disability Service ManagerCoventry City Council

Bury

The Metropolitan Borough of Bury hascommissioned The National AutisticSociety to develop a brokerage service tosupport adults with autism to negotiatefunding and manage their own support.This will include support to recruit andmanage personal assistants (PAs).

Brokers will identify the changes peoplewith autism want to make to their lives inorder to contribute to the development ofsupport plans and facilitate theimplementation of person-centred plans.They will also identify the support servicesand community opportunities thatindividuals require. It is envisaged thatlevels of support will be negotiated on anindividual basis. Other objectives includemapping the range of support servicesaccessible by people with autism availablein the Bury area.

The objective of the project is to ensurethat a minimum of 40 people with autismwill be using individual budgets and that80% of people report that their lives havechanged for the better. The brokerageservice aims to benefit people with autismliving in Bury in a variety of ways includingproviding people with more choice andcontrol, helping to develop local servicesfor local people and by encouraging morecommunity involvement.

Contact: Sara CrookdakeBrokerage ServiceBury

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This guidance highlights the key issues thatprevent adults with autism from accessing thesupport they need. It also identifies examplesof good practice from across England thatsuccessfully provide solutions to many ofthese issues. The South West Valuing PeopleNow Programme Board has commissionedthis piece of work in order that localauthorities and PCTs can use these examplesas templates to develop their own provision.

It is essential that all local areas develop anautism planning group, which is necessary toenable effective planning of local autismservices across health and social care.

Local autism planning groups must prioritisethe development of an autism trainingprogramme. This will improve thecompetency of community professionals sothat mainstream services across health,social care, employment and housing canrespond appropriately to the needs of adultswith autism.

Specialist autism teams improve outcomes foradults with autism and reduce costsassociated with reliance on more acuteservices. They provide a range of supportservices, including diagnosis and assessment,training to improve mainstream practice,specialist support to prevent placementbreakdown, low-level early interventionservices and drop-in support, and brokerage.It is essential that such teams are fundedjointly by PCTs and local authorities in order toaddress both health and social care needs.

The National Audit Office survey34 identifiednot only the poor quality of life experienced bymany adults with autism but also theinefficient use of public money. Nationalinitiatives (such as the current Autism Bill andcross-government autism strategy) have beendeveloped in response to the injusticeexperienced by many adults with autism.Local authorities and PCTs now have aresponsibility to seize this opportunity to makebetter use of public money in order to achievebetter outcomes for adults with autism.


Conclusion


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Valuing people White Paper (DH, 2001)• Focus on rights, independence, choice

and inclusion• Particular focus on increasing housing options and

employment opportunities

Fair access to care services (DH, 2003)• Decisions regarding eligibility to services should be

based on presenting needs• DH & CQC are reviewing this guidance as specific

groups, such as those with autism, are currentlyfalling through the net and not accessing thesupport they need

Disability Discrimination Act (2005)• Public authorities to promote equality

of opportunity• All services to make reasonable adjustments to

include people with disabilities

Independence, wellbeing and choice GreenPaper (Stationery Office, 2005)

• Sets out way forward for adult social care• Aim to maintain independence and give people

greater choice and control over the support theyreceive in order to improve quality of life

Improving the life chances of people withdisabilities (Cabinet Office, 2005)

• For disabled people to have more choices thatimprove quality of life and be included as equalmembers of society

• Focus on increasing numbers of peoplewith disabilities who live independently and arein employment

• Any disabled person who wants a job andneeds support to get a job should be able to doso by 2025

National Service Framework for long termconditions (DH, 2005)

• Need for prompt diagnosis• Support in the community to maximise

independence

Better services for people with ASD (DH, 2006)• States that it is unacceptable that some people

with autism fall between services (eg between LD& MH services)

• Promotes pooled resources, joint workingprotocols, joint training to help address boundarymanagement issues

• Specialist employment services should have thecompetence to support people with ASD intopaid work

Putting people first (DH, 2006)• Transforming adult social care through

personalisation to ensure best possiblequality of life

• Promotes person-centred planning andpersonal budgets

Our health, our say White Paper (2007)• Focus on more preventative services, improving

joint working between health and social services,better support for those with long-term conditions,and increased focus on tackling inequalities

The economic consequences of autism in theUK (Foundation for People with LearningDisabilities, 2007)

• Total cost of supporting adults with autism in UK is£25 billion per year

• The lifetime cost of supporting an individual withautism is £4 million

• Costs impact across all areas of public sectorexpenditure

Services for people with learning disabilities andchallenging behaviour or mental health needs(Mansell, DH, 2007)

• Need to develop specialist services locally that cansupport good mainstream practice as well asdirectly serve a small number of people with mostchallenging needs

World class commissioning (DH, 2007)• Adopt a more strategic approach to

commissioning aimed at improving outcomes andreducing inequalities


Brief review of relevant government initiatives

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Independent living: a cross-government strategyabout independent living for disabled people(Office for Disabilities, 2008)

• Ensure disabled people have the chance to fulfiltheir potential

• Cross-government strategy to ensure disabledpeople experience equal access to housingand employment

• Improve employment support for peoplewith disabilities

Commissioning person-centred, cost effective,local support for people with learning disabilities(Social Care Institute for Excellence, 2008)

• Highlights the need for more competent localservices to reduce reliance on out-of-areaplacements

Cutting the cake fairly (CSCI, 2008)• Recognises the poor quality of life for people, such

as those with autism, who are often deemedineligible for support services

Valuing people now (DH, 2009)• Aims to include everyone and identifies that

commissioners 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

TransMap (TIN, 2009)• Comprehensive multi-agency engagement• Full participation of young people and their families• Provision of high quality information• Effective transition planning• Array of opportunities for living life

Service for adults with autistic spectrumconditions (ASC) (DH, 2009)

• Aimed at commissioner in PCTs and LAs• Recognises that services can exclude people with

autism resulting in many adults with autism beingunable to access the support they need

• Highlights the need to considering including theneeds of adults with autism in JSNA

Commissioning services and support forpeople with learning disabilities and complexneeds (CSCI, 2009)

• LAs & PCTs have a responsibility to work togetherto ensure these people are being supported to livefull and independent lives

• JSNA weak on coverage of people with LD orcomplex needs

• Very few of these people are receivingindividual budgets

Valuing employment now (DH, 2009)• Ensure young people have the opportunity to gain

work experience at school and college (eg FLT) inorder to be better prepared for work

• Personal budgets provide an opportunity tosupport people into work

Supporting people with autism throughadulthood (NAO, 2009)

• People with autism are highly vulnerable due to thelack of appropriate support services

• Investment in specialised services results inimproved outcomes and cost savings

• Based on evidence from Liverpool AspergersTeam, developing specialist services in each areawould cost £40m but save the public purse over£150m a year.

Shaping the future of care together:consultation (DH, 2009)

• Aim to develop a national care service that is fair,simple and affordable

• State will pay for one third of care costs withremainder paid through insurance

A better future (DH, 2009)• Consultation for future cross-government

autism strategy• Social Inclusion, Health, Choice & Control, Training,

and Employment


Good Practice in Support Adults With Autism

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